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keithsmom03
04-26-2006, 07:38 PM
hey, there was a post on the old ds for parents with autistic children. i just wanted to say hey. i went to the neurologist today and we have now been given a formal diagnosis of high functioning autism. im still trying to take it all in, even though i knew that it was probably so, i still felt in shock about it, and sad as well. i just wanted to talk.

heather marie

tatertots
04-26-2006, 07:54 PM
I just want to say I know exactly what you are going through. My son was diagnosed with high functioning autism a couple of years ago. He is doing pretty good. He is really far behind with his speech and a lot with his personal social. He has to go see a ST 3 times a week and now he will have to go see an OT also.
If you ever need to talk I am here. How old is your DS? Mine is 4

keithsmom03
04-26-2006, 08:10 PM
hey, he is 3. he has been in speech for almost 1 3/4yrs, ot for almost a year, and behavioral mod therapy for almost 2yrs. he was in play therapy but she didnt do anything that i couldnt do with him:mad: so i pulled him from that. he is doing fairly well in speech, but is behind in his gross motor skills, fine motor, and etc like that. and is lacking majorly in the social area as well. also in play. his development according to his ot, is that of about a 13mo to 21mo and a few areas are scattered from 28mos to 31mos. he has always been behind, but has fallen even further behind. at least i know now though and can go from there with what to do next. a friend of mine gave me some info on places i can call and things that i can do to get more info, and my bhmt for my son borrowed me a book to read called playing, laughing and learning with children on the autism spectrum last week when we were discussing how she thought that he was but it was hard to tell because there were a few questionable areas. ive only gotten 2chs read so far:o well anyways. it is good to know that there are people that i can talk to. thanks

heather marie

Jaz_Trio
04-26-2006, 08:15 PM
(((HUGS MOMMA))) Zachary has not been diagnonsed with autisum, but has sensory intergration dysfunction, which is on the spectrum. He's 29 1/2 months old and says one word, though is very smart in other area's. He's also starting to show more "signs" including lots of repeating things/activities over and over as well as some "hurtful" behavors that seem not to bother him at all.

Anyway, he too is in OT and Speech, has been for 8 months now, each of them come once a week then he is in a special OT play group once a week too....I feel your pain and wish you good luck, lots of prayers and (((HUGS)))

SandyG
04-26-2006, 08:16 PM
hugs to you sweetie
david is 3 and what he lacks is speech only. he has apraxia but id unno if he has something else. its heartwrenching
hugs to you, imglad to know you got a dx. im bit scared to see a neurologist and dev ped. i dont want to hear he has something else .although he is in target with everything else, he does have his little quirks at times that might be autistic. take care

tatertots
04-26-2006, 08:44 PM
(((HUGS MOMMA))) Zachary has not been diagnonsed with autisum, but has sensory intergration dysfunction, which is on the spectrum. He's 29 1/2 months old and says one word, though is very smart in other area's. He's also starting to show more "signs" including lots of repeating things/activities over and over as well as some "hurtful" behavors that seem not to bother him at all.

Anyway, he too is in OT and Speech, has been for 8 months now, each of them come once a week then he is in a special OT play group once a week too....I feel your pain and wish you good luck, lots of prayers and (((HUGS)))


I am thinking that my Chloe will be the same way here also. She is almost 21 months and dosn't even say one word. She just started walking about a month ago. She kinda copies some of the things we do. She is completly lacking in her Communication, gross motor skills and she is only a little behind in her fine motor and personal-social skills.
She is going to start a program called Sooner Start where a ST and an OT and whoever else they say she will need, will come to the house and work with her. I am hoping she will get better with this. I try to work with her all the time and I am hopefull but I see her on the same path that my son was on at this age.

Mom2Mia
04-27-2006, 12:05 PM
:hugs: hugs to you mama! Emma is 7 and we just got a diagnosis -well - it's been spread over the past 9 months. She has tourettes, sensory integration dysfunction and high functioning autism - aspergers. Looking back - she had all the sign from very early on - like from a year old on - but we were kinda blind to it - just thought she was a quirky kid and it would work itself out.

Having a diagnosis is the first great step you can take. Now you can be on your way to helping your baby be better.:goodvibes:

I'm glad to see there are a lot of mom's here that deal with the same issues - the tourettes is old hat t us by now - the rest is very new and I know I"ll have a lot of questions too!

keegans_mommy
04-27-2006, 12:11 PM
I have asked one of the mods to please restore the stickied thread to this new site, so we will have to wait. :)

Since we last chatted, I took both girls to the DAN doc and they are both on suppliments so far. Claire is mellowing out a bit and Tiffany's appetite is ferocious! LOL It's helping but not a huge amount as of yet.

She has sent hair samples to the lab to test for mineral deficiencies and heavy metal output, I will let you all know how that goes.

Tiffany has now been put on zinc as she is deficient in that, she and I both have a yeast problem so we are on a strict diet for that as well. Sigh.

Claire is the least bothered by this and is being rather (surprisingly!) good about taking all these pills but Tiffany is fighting it a bit. Which is NOT surprising.

Anyway, it's hard to see improvement when we are scrutinizing their every movement everyday, trying to see improvements but others have commented on their improved behavior so I am taking that as a positive sign things are working for them. :) They have their next DAN doc appt. on the 8th of May. We will be finding out the results of their hair samples.

Mom2Mia
04-27-2006, 12:16 PM
I forgot to ask - have any of you heard of a natural product called Natural Cellular Defense? It's supposed to work wonders for all kinds of things - especially autism. By helping your body throw off heavy metals, toxins and poisons without being hard on your body in the process...I was thinking of getting it for Emma and Elayna. I've spoken with a mom whose little boy is autistic and she says it's worked wonders for him. Anyone else have stories?

keegans_mommy
04-27-2006, 12:43 PM
I have never heard of that but I am always interested in such suppliments. :thumbsup:

SandyG
04-27-2006, 02:36 PM
wow that sounds like amiracle drug
she gets it in a natural store??? online?? nice to know

Lucky Child
04-27-2006, 02:41 PM
I stickied it for you ladies! :thumbsup:

keegans_mommy
04-27-2006, 03:27 PM
I stickied it for you ladies! :thumbsup:

Thank you so very much! It's greatly appreciated! :thumbsup:

janelyb
04-30-2006, 03:25 PM
I am thinking that my Chloe will be the same way here also. She is almost 21 months and dosn't even say one word. She just started walking about a month ago. She kinda copies some of the things we do. She is completly lacking in her Communication, gross motor skills and she is only a little behind in her fine motor and personal-social skills.
She is going to start a program called Sooner Start where a ST and an OT and whoever else they say she will need, will come to the house and work with her. I am hoping she will get better with this. I try to work with her all the time and I am hopefull but I see her on the same path that my son was on at this age.

Have you had her hearing tested???? My son had a hearing test at 20 months and we found out (just as momy had suspected) he has a mild hearing loss. Definately get evaluations from your Early Intervention programs...good luck!

iris0110
05-01-2006, 11:21 AM
I just found this thread again. It is good to be back. Since i last posted we filed with SSA to get SSI for Kearnan. I got a call back last week and they said it looks like we will be approved. So not certain but we may be finally getting some help. If it comes through we will finally be able to take him to a DAN! dr and get him back in real therapy. Right now the only therapy he gets is through the public school and it is sad at best. He really needs OT and behavioral therapy, but right now we can't afford it and the insurance will only cover so much. Please keep your fingers crossed for us that this comes through.


Did anyone read the letter in the new issue of Mothering magazine? The mom said that she was always sad when new treatments came out for Autism because she knew they didn't have the money to try them. She had never been able to try any of the treatments for her child, and now even if she got the money, he is 11 and it was probably too late. It made me really sad, but I totally felt where she was coming from. You hear about all of these new wonder treatments, but then you feel like crap because you don't have the money to get your child treated. It just makes me feel like the only children that matter are the children of people with money. like my child doesn't deserve to get better because we are poor. :banghead:

~Stephanie~
05-02-2006, 03:10 PM
My six year old son Cameron is autistic. He was diagnosed at age 3 so we have definitely BTDT. Big :hugs: for you. Let me know if you have any questions.

keegans_mommy
05-02-2006, 04:53 PM
My neighbor has a 7 year old daughter who is autisic so she and I had a looooooong chat today about getting the public school system to test Tiffany for special accomidations in classes. (she has Asperger's and ADHD)

Oh, and we find out the results of her hair test this next Monday!

So anyway, if anybody has any good advice for me, I will take it!

Mom22girlz
05-04-2006, 03:00 PM
I just wanted to stop in and say hi. It is a nice place to talk about our children. I have a daughter that was diagnost 2 years ago with aspergers. I excepted it about 1 year ago. I have seen the signs since birth now that I look back on it, since she was a first child for me I thought all babys were like her. If I had my second first I and Megan second I would have seen the signs right away oh well. Right now I am trying to let Megan be who she is and learn to accept her for who she is. For me that is hard, I had dreams of swimming lessons and ballet she has a hard time with both. LOL she doe go to daisys at the AGS church so that is fun for her. Any ways I am glad I found this group.

Rachel

keegans_mommy
05-04-2006, 03:11 PM
Hi Rachel :) My oldest is an Aspie kid :) What do you find to be the hardest symptom to deal with?

Ours has got to be the fact she HAS to have the last word in an arguement! :banghead: She hates to be touched when she's upset and have seen her scream bloody murder........IN PUBLIC! :spit:

Anyway, we have taken several steps back to just watch and see her for who she is. With us having to learn about what is her personality and what is Asperger's has been difficult but we are learning.

Welcome!

Mom22girlz
05-04-2006, 04:27 PM
The part about the last word of the argument is so Megan. I let her have the last word as long as she does what I want. The thing I have the hardest time with is yes the arguing. I have learned from my husband not to continue argueing with her. If she chooses to throw a fit I take her to her room and put her on her bed and tell her she can get off her bed. Then she pulls on my heart strings I will NEVER SEE MY MOM AGAIN! She chants this over and over I just have to tell my self she is doing it to push my bottons. Does you oldest hardly ever eat? Megan is tall and skinny I am amazed how she can live on snacky foods. I give her health snack foods but seems like if it involves a fork and spoon forget about it.

Rachel

SandyG
05-04-2006, 05:54 PM
davis is only apraxic (well what i know) but its like a little bird it drives me nuts. if its junk food he will eat it no problem
the only things he eats are fries, hotdogs and pasta. idont know how he doenst have anemia (i test him for that) . he only drinks OJ no milk. he use to like choco milk and now can stand it. OH AND NACHOS FROM TACO BELL! he wil eat it with the beans. but if i buy the beans and stick em in nachos he wont eat it LOL :headscratch: he drives me bonkers. i just let him eat his pasta everyday and not worry about him

keegans_mommy
05-04-2006, 06:41 PM
Does you oldest hardly ever eat? Megan is tall and skinny I am amazed how she can live on snacky foods. I give her health snack foods but seems like if it involves a fork and spoon forget about it.

Rachel

She goes through stages. She sometimes eats just enough to live and other times she eats more than I do! :headscratch:

But she is skinny due to being on meds up until 2 months ago when we saw a DAN! doctor who has put her on suppliments.

Yes, that arguing bit is horrid! And the tantrums are insane! She is getting better about those in the past couple of years but I use to have to put her into her room and hold the door :blush: She would get me so angry I was afraid of losing control of myself and hurting her. :( She would scream bloody murder, kicking and screaming. Hitting windows, doors and throwing toys. She did that for 30 min. one time and all I could do was hold the door and pray for her to stop and hope she didn't do any damage.

Mom22girlz
05-07-2006, 11:00 PM
Does any other parent here hate weekends? My dds schedule is all screwed up because of the weekend. I actually dred the weekends with my dd. I had a thought yesterday that I can't wait until she grows up and moves out.

Rachel

LittleHobbitsMomma
05-08-2006, 01:29 AM
We are hoping to get a diagnosis tomorrow for DD age 4. She definetly has sensory integration issues, but there is also something more we can't put our finger on yet. My parents have been visiting and DD is beside herself most of the time, it's so sad and hard to deal with. I don't think she has hugged or kissed them yet, and they have been here a week. I put her vest on her tonight when she was really losing it, and she calmed down within minutes...it's got to be hard for our kids!!

Mom2Mia
05-08-2006, 12:45 PM
Ours has got to be the fact she HAS to have the last word in an arguement! She hates to be touched when she's upset and have seen her scream bloody murder........IN PUBLIC!

That's Emma......to a T!

Anyway - here's a link for Natural Cellular Defense. You can also Google it and find a lot of articles and info on it. I"m starting the kids on it in the next 2 weeks so I'll keep you updated on if we see improvements or not. I've talked to another Mom whose son is severe aspergers and she says this has been a miracle for them.

http://www.windersight.com/

keegans_mommy
05-08-2006, 12:50 PM
The above post's first sentence? THAT is Tiffany! Last word, can't stand to be touched when upset and yes, she has screamed bloody murder in public and everywhere else. :blush: Yikes!

Anyway, I am about to take her and her sister to the DAN! doc after I pick them up from school. We are finding out the results of Tiffany's hair test and claire's blood and hair tests. I am a bit nervous to see as it will tell us alot about why they are this way and hopefully how we can help them out.

Keep your fingers crossed it won't be too difficult! I want my quiet good girls back! :goodvibes:

keegans_mommy
05-09-2006, 07:30 AM
Ok, back to report the findings of the hair test!

Just as I had suspected with Tiffany, high levels of Mercury! She also has abnormally high levels of aluminum so we are going to Home Depot today for a water filter as the most aluminum comes through drinking water but also is in some baking soda's and deodorants.

She has an extremely, (off the charts in fact!) level of Manganese which can cause depression, manic episodes, anxiety, forgetfulness and such.

She starts chelation (heavy metal detox) in 3-4 weeks after we get her low levels of essential minerals up as the detox can strip the body of these as well as the toxic metals.

Claire is not as high in mercury, which makes sense as she was born AFTER 1998 when mercury was banned, so she won't have to go through chelation but she has some abnormally low levels of cobalt and selenium and also zinc. The first two can greatly affect your mood and she has a HUGE disorder with her emotions so I am hoping that will balance that out for her! It's also coincides with others within the autisim spectrum to have abnormally low levels of cobalt. These people, along with those who are experiencing dementia or altzimers's (sp?) have high levels of aluminum and she is also experiencing that too. :(

So, we are busy working on leveling out their abnormally high and low levels of these metals and essential minerals. They are having a blood test today to get a more comprehensive look at their B vitamin deficiency and other issues that may be hidden that a hair test cannot detect.

I am excited to get such results as this can mean the correction of the autisim spectrum for both girls!

Kelolsen-and-Padawan
05-09-2006, 03:51 PM
I'm not a parent of an autistic child but I am a special education teacher. When I was in grad school I worked as an aide at a special needs private school and I was a one-to-one aide for a 10 year old girl w/ autism. HEr autism was pretty severe. It was recommended that I read Temple Grandin's book "Thinking In Picutres" to help understand this child and it really did! Temple Grandin is autistic herself and said she was the type of child who would be rocking and screaming in the corner of the room, barely verbal. Now she's a PhD in animal science and invented that machine that "squishes" autistic people. I used to sandwich my student in the gym mats and sit on it :p I know that sounds awful, but she loved it and would take my hand and bring me to the mats to do this for her. Anyway, the book helped me understand how she related to the world and it gave me new perspective when working with her. I highly recommend it.

keithsmom03
05-09-2006, 07:58 PM
hey, how is everyone doing? im hanging in there. been a very trying week for us. keith has been a mess. he learned how to spill his milk out of his bottle onto his toys and the floor and no matter what i do to try and correct it it doesnt work, and when i take the bottle away its like his whole world just fell apart. i did however have a great experience this week. i went to kohls, as i have been looking everywhere for a "squishy pillow" you know those ones with the beads in it that feel really wierd. and i found one, a cute ducky one in fact, and i gave it to keith. his face lit up, he grinned and said ducky. and has not put that ducky down for the 2 days he has had it!!!!! i have NEVER seem him so attached to something, not even his cars, which he is systematic with. and it was great to see his little face light up like that.

anyways, on a side note, someone had wrote about what is the hardest thing for you to deal with as far as behaviors. mine would have to be keith's hitting, punching, kicking, and being physically harmful to himself. that and the fact that no matter what i do i have to tippy toe or i could set him off. how do you deal with that?

also, the echolalia, when you are trying to correct them, how do you deal with that? this kid can go on for 10-15mins with the same thing and it gets really old after the first 5mins. redirecting nothing works.

oh and does anyone else's kid look like they are trying really hard to understand you at times but you look at them and can tell by the look on their face it just didnt "click"?

heather marie

keegans_mommy
05-10-2006, 05:40 AM
Heather Marie- :hugs: Re-directing can sometimes be difficult. With Tiffany we have to give her plenty of time to finish up what she is doing and then we can change the activity. This is something my DH can't understand, has NO patience for and therefore it causes a huge problem between him and Tiffany. :banghead: Then it starts an arguement and everybody who knows anything about Asperger's syndrome is: YOU NEVER START AN ARGUEMENT WITH AN ASPIE KIDS AND WIN!!!!! :lostit: They just don't back down and they don't quit! LOL

Oh anyway, we are getting along. At least she is good at taking these suppliments and I am hoping that in another month we can start the chelation and I pray it works! Mothering magazine had a success story of an autistic child who was brought back to normal after chelation therapy and I am really praying this works!!!!

jls~Kain~Drake
05-10-2006, 05:59 AM
I used to follow this thread on the old ds because I thought ds2 was a little different...since then..I really think he's just going to be adhd and not autistic or anything like that...but, I was wondering..for those of you that have children with...and i can't remember the name of it...but sensory something...where they can't tolerate certain textures (of clothes), etc....

When did that start?

Quiverfillin
05-10-2006, 07:53 AM
Jen, that's Sensory Integration Disorder. My DD has always had it on some level, it became extremely obvious by age 2.

We're having a rough stretch here. 2 weeks ago I woke up late on a Sunday morning and my 5yo autistic DD was not in the house. We found her about 45 minutes later and she was 1.6 miles from our house. We would not have found her that fast if God had not provided amazing "coincidences" with people that we knew seeing her. It's a long story, but it's been a rough 2 weeks since then. She's now obsessed with leaving the house. Every chance she has, she is out on the road. We can hardly let her out of the house anymore. She's been throwing some amazing tantrums because we locked the door so she can't get out.

To top it off, she's been sneaking food off diet and that's making her behaviors worse than usual. She's on the Specific Carbohydrate Diet, which is very restrictive, but very effective for her. Diet has always played a huge role in her treatment, and when she eats on diet, she's almost manageable most of the time. But she's had a bad diet week and the behaviors are almost more than I can take lately.

Thanks for letting me vent. I know you mamas understand.

jls~Kain~Drake
05-10-2006, 09:54 AM
Ds2 can't tolerate anything being on his feet...I don't bother putting socks on him anymore...once when he was taking a sock off, it got stuck and he FREAKED out until I helped him with it...I can't put him in sleepers anymore either because the feet in them bother him. He's only 8 months old...would this be sensory integration problems or normal behavior? My first never did that but he was a very, VERY easy baby. Ds2, on the other hand, is high-needs and I swear he'll be adhd.

keegans_mommy
05-10-2006, 01:15 PM
Well sensory problems are quite normal for any child within the spectrum, even people with simple ADD. Sucks but it's true as I have that problem and it drives me crazy sometimes! :lostit:

Anyway, Tiffany has it pretty bad some days and it drives me to the edge on days I don't have the time for that but what can I do? I have to remember that what doesn't bother me is unbearable for her. She has a ton of clothes that she won't wear because it's "itchy" so it sits waiting for her younger sister to see if it's "itchy" for her as well. LOL

Poor Tiffany, she had to go for a blood test today and I couldn't tell her that we were doing that today just that we had an appt. Until we go there and she knew. Well, I knew that she would have to be held still and I was afraid that it would take more than 2 people to do the drawing but she surprised me today and she sat on my lap (shes 11 next month! LOL) and I had to hold her other arm away but she did MUCH better than I had ever anticipated! Whew!

Mom22girlz
05-10-2006, 01:19 PM
also, the echolalia, when you are trying to correct them, how do you deal with that? this kid can go on for 10-15mins with the same thing and it gets really old after the first 5mins. redirecting nothing works.

oh and does anyone else's kid look like they are trying really hard to understand you at times but you look at them and can tell by the look on their face it just didnt "click"?

heather marie

I hate to say this but you have to learn to ignore it. My Megan is a non stop talker so I have trainned my self to know when she is echoing and when she is really talking. You can tell she is echoing buy the dull tone of her voice. I know how hard it is to learn to ignore it but its how I have learned to function and servive with out going crazie.

I think that the look that they dont understand but they say they understand is a functioning thing my daughter is high functioning and she has learned that she has to say what I want to hear even though she really does not understand at all. That is how kids learn to "function " in our world.

Rachel

jls~Kain~Drake
05-10-2006, 05:08 PM
I vaguely remember some posts about learning a word and then losing it? Ds2 is 8mo old and he was saying dada for about a week or maybe 2...and now he won't say it at all...but he's learned "uh-oh"...I'm not trying to give him a diagnosis or anything near that - I'm just really curious....I'm naturally an obsessive person...and being a sahm makes it a lot worse (meaning I have my children to focus on 24/7...rather than outside work)

dessismama
05-19-2006, 05:51 PM
I am joining you ladies. My almost 10 year old DD Dessi was just diagnosed with Aspergers. In fact, Rachel sort of pointed out that Dessi and Megan are like soul-mates (we live in the same town and our kids go to the same school!)...

We knew about the ADHD from the start, but I cannot believe all these years we missed the asperger signs.

I want to know more about DAN please!!

Thanks, mamas!!

Big hugs to everyone!!

Maria

keegans_mommy
05-20-2006, 07:40 AM
DAN! stands for: Defeat Autisim Now! http://www.hpakids.org/ Go there to find a DAN! doctor. I highly recommend it!

These doctors are wonderful by the way, we have one we really love and is doing good things for our children. :) Tiffany is now in the process of bulking up her stores of essential minerals so when she goes through chelation in a couple weeks they won't deplete her stores along with taking out the toxic heavy metals poisoning her body.

My girls have had blood tests and hair sample tests, both done in a medical lab. so far so it's been quite enlightening and we have had to change a few things around here to avoid what they both have in their bodies already.

We have stopped ALL vax, we bought a water filter as some of the heavy metals are found in OUR water where we live and our way of eating, cleaning and healing ourselves has changed dramatically to lessen the impact of what they do to our children. It's been alot, it's been expensive but it's been worth going into a small debt to fix our family. :thumbsup:

geckoed
05-23-2006, 05:05 PM
:hugs: my oldest has autism. He was dx'd at 23 mmonths. He'll be 8 in a few days. They said he wouldn't talk, ride a bike, use the toilet. He was in diapers until a week shy of 4yrs old, and couldn't answer a question until he was 5.5. But he's reading Frankenstein right now, and "passes for normal" most places most of the time (even with friends family and neighbors)

dessismama
05-23-2006, 10:14 PM
DAN! stands for: Defeat Autisim Now! http://www.hpakids.org/ Go there to find a DAN! doctor. I highly recommend it!

These doctors are wonderful by the way, we have one we really love and is doing good things for our children. :) Tiffany is now in the process of bulking up her stores of essential minerals so when she goes through chelation in a couple weeks they won't deplete her stores along with taking out the toxic heavy metals poisoning her body.

My girls have had blood tests and hair sample tests, both done in a medical lab. so far so it's been quite enlightening and we have had to change a few things around here to avoid what they both have in their bodies already.

We have stopped ALL vax, we bought a water filter as some of the heavy metals are found in OUR water where we live and our way of eating, cleaning and healing ourselves has changed dramatically to lessen the impact of what they do to our children. It's been alot, it's been expensive but it's been worth going into a small debt to fix our family. :thumbsup:

Thanks so much !! I will look into it!!

LittleHobbitsMomma
05-23-2006, 11:14 PM
We just got DD's diagnosis today: PDD/NOS and Social Anxiety Disorder. At least we know how to help her now, and have an idea (maybe) of what's going on in that pretty little head of hers! Now I am thinking what did I do wrong where...was it the three months in the NICU...did I do something...there are so many theories as to what causes this stuff... Did any of you other mommas feel this guilt too?

keithsmom03
05-24-2006, 06:57 AM
yes, i have felt guilt from the get go with keith, i have always dealt with issues since he was born, and i kept asking myself, what did i do? what could i have done to prevent these things? was is something the dr's did? but i think i have finally accepted that there was nothing i did or could have done to change the outcome. dont take this as i dont love my son because i do very much, and i wouldnt trade him for the world, but there have been many many times that i have wished that i could just make him better and take all these sucky things that he has to go through and has had to go through away.

heather marie

keegans_mommy
05-24-2006, 07:24 AM
We just got DD's diagnosis today: PPD/NOS and Social Anxiety Disorder. At least we know how to help her now, and have an idea (maybe) of what's going on in that pretty little head of hers! Now I am thinking what did I do wrong where...was it the three months in the NICU...did I do something...there are so many theories as to what causes this stuff... Did any of you other mommas feel this guilt too?

Everyday of my life. :( But since doing lab tests on the girls, we are holding out hopes of "fixing" our children so it makes us feel better that we are righting any possible wrongs we may or may not have done to our children. But it's our way of saying that "we have done all we can to help them" and stop saying to ourselves "what have we done?" KWIM?

So far so good and it feels so good that we are doing this, even if it doesn't fully work, anything is better than where they were a few months ago.

Don't beat up on yourselves :hugs: We as parents do what we feel is best at that time in our lives and looking back on my 11 years of parenting, my parenting style has changed, my medical outlook has changed and our eating styles have changed. We are constantly evolving as we learn what is better for us. Maybe next year or so I will :banghead: on eating organic foods :giggle:

imommy
05-24-2006, 07:09 PM
Can I ask a question? I don't know why I often wonder about autism but I do. My son is only 1 so it's probably too early to tell anything but here are my questions anyway.

What were your child's first signs of autism? What behaviors did they exhibit first that grabbed your attention?

Also what age did you first notice these things?

Thanks in advance ladies!

keegans_mommy
05-25-2006, 09:55 AM
My Aspie DD is 11 next month so looking back over the years is a bit difficult, especially since I always figured that some of her quirks were just "her" KWIM? I am remembering things that she did that, perhaps, wasn't just "her" but the Asperger's.

One thing about these children in the spectrum is that these children are VERY inteligent! She started talking at the age of 7 1/2 months, drawing stick figures at the age of 12 months (no kidding!) reading short sentences by 3 1/2 years of age and so forth. She is in the GT program for art (no surprise but I am super proud!) She is very focused on horses, obsessions with particular things is a sign, and knows everything to know about them LOL We don't argue anything about them or: bugs, dragons or even hamsters :giggle: Because we KNOW she knows more than we do on these particular subjects. ;) She is a mini encyclopedia.

She makes weird noises quite often, mimicing lion roars and neighing like horses and it's very irritating!

Looking back to her toddler-hood she was ALWAYS on the go and I got the "talk" from other "more responsible, caring" parents about how I shouldn't allow my 12 month old DD on the big kids playground equipment but I couldn't stop her! She had NO fear and has NEVER fallen off of any of it and I was always right there with her. So what was the problem? So, NO fear was one symptom, running as if off a battery is another but more of the ADHD but that is all I can recall right now. :)

imommy
05-25-2006, 11:33 AM
I know I shouldn't look so much into it but he does a few things that pick my brain.

He is CONSTANTLY jumping. I mean the boy will jump if you hold his hands and does not tire out. He does a few other "stimming" type behaviors too. He will focus on one tiny thing for a very long time, always focuses on the function of things, i.e. how a wheel spins over and over, etc. We always ask him if he's going to be an engineer or brain surgeon because he sees the minute details of things. He does other things too but I won't go into alot of detail.

HOWEVER, he does have vision problems so some of this might be related to that. They can't tell for sure if he will have other related issues but we go for a check up about every six months. The eye doctor actually asked if we had a neurologist involved in his care and I said no and he said that if his developmental milestones start lacking or slacking off that we should get one involved. I'm just taking things one day at a time right now but there is this poking wonder in my mind about autism.

When my son was first diagnosed with vision problems I was saddened. I think every mother wants their child to be perfect in every way. However, I've done alot of reflecting over the last year and I know that my child is PERFECT in his own way. He is NORMAL in his own way and I'm okay with that. I always just say that God has given me a little child to love that is that much more special.

Anyway. I don't know if we'll walk the autism road or not but for some reason I am always wondering. I hope I didn't offend anyone by posting here. I know that autism is not something to be taken lightly and that some of you struggle immensely with the subject. Thanks for letting me share my thoughts!

babamama
05-28-2006, 04:09 PM
i just read thru this thread & i'd like your opinions if that'd be ok...
my son will be 2 in july, & i'm just starting to look into Sensory Integration Disorder, so i'm still trying to grasp everything.
we lost our daughter at 38wks gestation around Christmas, so part of me keeps saying "there's nothing wrong, you're just trying to FIND something to focus on", but i truly don't think so (& i've soulsearched about it)

after reading a bit & thinking back, CJ's had these lil "quirks" since he was a newborn, but just in the last 10mo it's becoming really apparent.
first off, no grass lol- aboslutely HATES grass, finally got him walking in it if he's got shoes on (sometimes lol), & 'weird' feeling objects, like kooshballs & slimey type things. we did paper mache & that took him forever to play with (but thankfully he did, it was fun getting messy).
at his 19mo well-check, they'd asked what words he was saying "even if you're the only ones that understand him" well at the time, i think we rattled off 10 or so? & clear they were NOT, but we'd figured out what he was TRYING to say & the dr. counted that. but NOW, he says 'dada'.... actually started calling me 'baba' (used to call me MaMa- dunno if losing the "m"s means much tho). once in a blue moon he'll parrot "yeah" & "ok" but all the other things he was saying alot at 19mo, he doesn't say anymore.
& we're finding it semi-common for him to beat on himself when he's upset/mad (but a friend of mine told me this was normal 2yo behavior?? we don't hit so it makes me feel awful as i know some kids that are hit do this to distract themselves from the environment).
he's got this obsessive touching thing that drives me CRAZY sometimes- the look on his face is almost as if he's not in full control when it happens tho, its' hard to explain.
& then this obsession w/ 'softies'??? lol i mean, i'm a touch person too- if it's soft, i gotta feel it & enjoy it, but if he sees a tag on anything (blankets, pillows, clothes, etc) he just disappears mentally- his only goal is to reach the tag & rub it in one hand while he sucks his fingers. it's gotten so bad actually that i made him some tag-rags w/ poodle fleece/polar fleece & satin tags all around the edges. & now its' gotten even worse that we have to make sure we have one ALL the time or he'll have meltdowns the whole time we're out. give him his rag tho & it's like turning the power switch off. & i'll find him all over our house in corners w/ his rag, sucking his fingers. i mean it's cute & all but it just feels so sad in my gut for some reason.
& oh- is it normal for a 15+mo to organize everything by color??? i was totally shocked when he did this- gave him some fruit snacks & he grouped em by color & ate each color before the next. & it's extended to all food (has to eat all one color then the next), & his toys, he'll put all the colors of his giant legos together, if they get mixed, he gets quite 'flustered' & tears them apart to fix them.

i should add he is my first child, but i constantly feel crazy/stupid/paranoid all at the same time b/c i have no clue what's average for kids this age.
i'm going to see about getting his hearing checked next month too cuz there's lots of signs of some sort of hearing loss too.
am i nuts here? am i looking too hard & these are just normal kid things??
thanks ladies
~marcia~

iris0110
05-29-2006, 12:22 PM
Marcia, I am so sorry about the loss of your daughter. :hugs: I lost a baby girl just before Christmas two years ago.

My son also has SID, and looking back I can say that he has definately had it since birth. Now that I have another living child I can look back at things that Kearnan did and see how odd they were. He never mouthed things. Even as a small baby he didn't put toys in his mouth. He is very orally defensive. However while I can see the sensory stuff I do know that they other autistic aspects didn't apear until 18 months when he suddenly regressed. The Dr's claim this just happens, but I know it was the vaccines (alright little tangent over now).

It doesn't sound like you are over reacting, it sounds like there could definately be something going on with your son, and early intervention is very important. I don't know about the speach per-sey, as there is a large range of normal for speach development, but definately some sensory stuff. If OT is started early enough, Sensory integration disorder does not have to be at all disabling. I would talk to your pedi about it. Ask about early childhood intervention in your area. It may be called early intervention, or infant and toddler intervention or something similar. I think pretty much every state has it. They will evaluate your child for free and help you to decide what if any intervention is needed. In TX the therapy is provided in your home at little to no cost to you. It was so wonderful for Kearnan and I wish we would have found it when things first started to go wrong. We let the pedi put us off until he was two. You may also want to ask about other evaluations if you feel they are warranted. I found that the pedi was very reluctant to say there was anything wrong at such a young age and so we had to fight hard to get evals and treatment. But every one will tell you that early intervention is so important. I let them put me off because I didn't want to believe something was wrong. As a result my son has suffered. You have to be your child's advocate. You know if he isn't acting right, and you have to let them know.


Just as a little aside, Kearnan reacted very strongly to losing his sister. It was very hard for him. He acted out and became very moody and emotional. But at the same time her death was a catalyst for his speech development. He needed to tell us how he felt and so he had to be able to talk. A month after Arawyn died Kearnan made his first sentence in over a year. He came to me and said "where is baby?" After that he gathered more words and created more sentences. Though for months all of his words and sentences were about his baby and where she had gone.

babamama
05-29-2006, 11:14 PM
Shannon, thanks
i'm also very sorry about the loss of your daughter too.
in our case tho cj was only 18mo & generally seems completely oblivious to things going on around him, he didn't realize we were having another baby, etc. but the emotional impact it had on him in the first 3mo broke my heart.
& YES!! CJ never mouthed things either! & his defensiveness is getting more & more apparent.
& i'd forgotten that he HATES getting things on his hands- it's funny b/c like the paper mache gook, he painted himself w/ it & was fine till i could clean him up- but otherwise, looks horrified if there's something on his hands (dirt was this weekend's new thing, since it warmed up here finally)

one more question real fast tho- is your son overly sensitive? i mean, CJ never responded to "no" for some reason, it never clicked & still doesn't. so we changed to "stop" & we don't yell, & unless it's a possibly dangerous situation we always ask him to please stop- it's RARELY even 'stern' sounding. but (i use that as an example b/c it's the most frequent he reacts to) he'll just drop to the floor & cover his face & sob- or at the table, he'll cover his face & sob & won't eat after that.
i just wondered if there was another way to respond to him that won't make him so upset
thanks again
~marcia~

iris0110
05-30-2006, 02:01 PM
Marcia, Kearnan is overly sensitive like that. If we tell him no or don't he will just loose it. He melts down with this awful sobbing like the whole world is falling down around him. Unfortunately I have not found anything to help it. He can't always have what he wants. Sometimes for his safety or my sanity I have to say no, and it always ends in a tantrum. I try to do as much distracting and redirecting as I can, and I have made the house as child friendly as possible to limit the number of times I need to say no. I also try to pick my battles. If it isn't a huge problem to say let him run around naked for example, then I do it rather than arguing and causing an outburst. Sometimes I have noticed that he fake cries when he doesn't get his way to get attention. In those cases I leave the room, or put him in his room. The tantrum doesn't last as long that way because he is looking for attention and no one is there to notice him. When he calms down I give him lots of positive attention to reinforce the idea that good behavior is the way to get what you want. :hugs: I wish I could be of more help. It is hard having an overly sensitive child. It seems like Kearnan over reacts to everything, from paint or dirt on his hands to being offered a food he doesn't want (I have never force fed him in his life, I don't know why he thinks I am going to try now) to being told no. I know he feels totally out of control and it is just as hard for him. Understanding helps, but it is still hard.

Mom22girlz
05-30-2006, 04:51 PM
one more question real fast tho- is your son overly sensitive? i mean, CJ never responded to "no" for some reason, it never clicked & still doesn't. so we changed to "stop" & we don't yell, & unless it's a possibly dangerous situation we always ask him to please stop- it's RARELY even 'stern' sounding. but (i use that as an example b/c it's the most frequent he reacts to) he'll just drop to the floor & cover his face & sob- or at the table, he'll cover his face & sob & won't eat after that.
i just wondered if there was another way to respond to him that won't make him so upset
thanks again
~marcia~

Your son might be a visual learner/ thinker so you could keep a small stop sign in you purse or pocket. When he is doing something he needs to stop show him the stop sign. First read a social story about what a stop sign is and why you use it. I know it sounds stupid I did not want to use it but it really helped Megan.

HTH
Rachel

babamama
05-31-2006, 09:50 PM
Rachel,
even if he wouldn't understand? i know for a fact explaining it wouldn't do anything- he doesn't comprehend much or very well. (should you be able to explain something like that to a 2yo?? i haven't a clue, why i asked)- basically we can ask him if he wants something (we have to hold it- food, etc), he understands what his sippy is & after 2mo is finally realizing what his "bowl" is (how he tells us what exactly he wants, instead of a meltdown), but he doesn't seem to understand reasoning or explanations one bit.
just curious...
is your daughter able to comprehend things like this?

btw, met w/ the social worker here today & after talking w/ her she's sure he needs some assistance. put in a call to EI so she said to give them a week & she'll call them back & hound them. it was even more apparent to her when she met him after we talked on the phone.
so we'll see. not that i WANT my son dealing w/ this- but it feels better knowing something's not "right" instead of everyone looking at you like you're nuts :-)
~marcia~

keithsmom03
06-17-2006, 02:08 PM
checking in. how is everyone doing? things are kind of crazy here. ds has been out of his behavioral mod therapy (insurance troubles) for 4 weeks now and i can really tell the difference. he has been so agressive lately. even more than he already was. anyways. how is everyone else doing?

heather marie

keegans_mommy
06-20-2006, 08:39 PM
We are doing great! The Chelation seems to be working! :goodvibes: We have been looking for signs of Tiffany becoming more normal and my MIL even commented that she is more calm and "normal". :D Which just fills my sould with happiness! She has been on the Chelation for close to 2 weeks so this stuff works as fast as the success stories I have been reading about and I couldn't be happier!!!!

iris0110
06-20-2006, 09:22 PM
Well lets see we qualified for SSI, we are getting an extra $500 a month for his care. So we can finally afford a DAN! dr. Plus SSI qualifies us for medicaid. I was excited to learn that our regular ped is on medicaid now (he wasn't when ds was on it at birth) and they will cover his speech, feeding and occupational therapy that he had had to quit because our insurance wouldn't cover it. I am still having a hard time choosing a DAN! dr, there are several in our area. I am calling two offices tommorow to see what kind of feel I get for them. If anyone in the DFW area has any suggestions please let me know.

Ds is in the middle of a vast jump in abilities. He is talking more and use more descriptive language. The other day he hugged me, patted my breasts and said "you're lumpy" I should have been insulted but I was so excited that he was using a descriptive term that I didn't care. But he is also having some more behavioral problems. He is still in diapers and today he bit me. Left a nasty bruise and drew blood. He hasn't done that in a very long time. HE is also refusing to wear clothing at all so leaving the house with him is super difficult. It seems like these things come in waves for him.

i0lanthe
06-28-2006, 09:25 AM
Hi everyone. My ds (3 years old) is diagnosed autistic spectrum PDD/NOS. He knows a lot of ASL signs (he communicates his wants well now) and is just starting to be able to say a few words (not that anyone besides me and therapists understand them yet :) ). He is my firstborn and has always been a little different. I didn't realize the little differences til I had another child (dd is 1)... before diagnosis I just saw that he was not talking and in addition thought maybe he was shy with people. doh!

Anyway, I am coming out of lurking about it because I would like to know people's thoughts or experience with potty learning. I am totally in the dark here 'cause he just does not seem to be like other kids on the birth board I've always been on on another site. He is not real interested in it and doesn't tell me if he is wet or has pooped (I switched from sposies to prefolds/covers in the daytime so that "wet" would be nice and obvious :) and joined this site)... should I try to get him more interested, or chill out and wait a while longer? I'm not in any rush and his preschool does't require it at this age and we have plenty of other stuff to work on.. heh.. but if I "should" be challenging him more in this (like so many other things) then I don't want to let him down. :headscratch:

iris0110
06-28-2006, 10:51 AM
My ds also has PDD NOS. He will be five August 4th and is still in diapers (I am glad I switched to cloth cause it has saved me a ton of money). In my experience pushing does not work, they just shut down. There are a few things in life you cannot force someone to do, speaking, eating, and using the bathroom are the top ones. I have tried everything to get Kearnan to use the potty. He is physically capable, and he understands when he needs to go and what he should do. THe problem is I just can't get him convinced that he should want to use the potty. He doesn't grasp the social aspect of it. He just doesn't care that he is still in diapers. He doesn't care to be like other kids, and while he enjoys potty rewards, he is happy with just one or two a day and doesn't understand why he should go to the potty every time just ot get a treat. Hopefully some one will chime in with a system that they have found to work with ASD kids. The only moms I know with ASD kids in real life have trained their kids much later. My cousin is Autistic and he trained at 5 in his special school using the picture exchange system (this has worked well for him, but never worked with ds). Another friend's ds didn't train until 7.5 yrs.

keithsmom03
06-30-2006, 06:27 AM
i have no advice either on potty training as im in the same boat as you are. my son is 3yo and has absolutely no interest, doesnt tell me when he has gone in his diaper, and doesnt tell me when he has to go. in the morning i try to get him on the potty, and periodically i try throughout the day, but if he fights me i dont push. i dont forsee him being out of diapers anytime soon, and i really could care less what others think about it. because they dont walk in my shoes. so dont worry, hell come around to it, it is just going to take longer.

heather marie

keegans_mommy
06-30-2006, 07:55 AM
Well ladies, Tiffany's chelation is working well still, working on 3 weeks now!

I have also visited this doc and I will be doing the same routine soon as I have just been diagnosed with asperger's as well. Life kinda sucks when you think about it that way but at least I am armed with the knowledge I need to understand it and how to better my situation. :) I will let you all know how it goes. :) They want a hair sample but the truth is, I color my hair so they cannot use the hair on my head so they want pubic hair but.........ahem.........I trim it rather close so that is a no-go either. At least for afew weeks until I grow the "fro" out :blush: But I can at least get the blood tests done for now. ;)

SoftBumBaby
08-02-2006, 01:33 AM
He doesn't grasp the social aspect of it. He just doesn't care that he is still in diapers. He doesn't care to be like other kids (snip)

Yeah that. :rolleyes: I've got one of those too... "Colin, don't you want to be like Daddy? He pee-pees on the potty. Or like Mommy? She pee-pees on the potty. Or like Bear (Bear in the Big Blue House video)?" = blank stare, followed by non-verbal request for a cracker. :laugh: Sigh.

SoftBumBaby
08-02-2006, 01:42 AM
WOW, keegans_mommy. That's quite a bombshell to be dropped on you! (The asperger's dx.) Can I ask how the hair sample will help them with the diagnosis? I didn't know there was any sort of physical test for asperger's or for any of these conditions. I am glad to hear that Tiffany's chelation is going so well. All this REALLY makes me want to get Colin to a DAN doctor...


On another note, can I ask you mommies if anyone has tried the GFCF diet (gluten/casein free)? I was actually just talking about this with another mommy on here. We are going to go for it and will be GFCF shopping this weekend--primarily whole foods, and eggs, but a "treat" or two because I heard Trader Joe's has a bunch of GFCF semi-junk foods. I just don't want Colin to be too shocked right off the bat, you know? I want him to know he can still have some "fun" foods (and he won't have any way to know they're GFCF anyway). I also might try the casein-free this week and then start on gluten-free next week as I have heard the withdrawal of taking both away at once is terrible on kids. :( Wish us luck. DH is not really on board and is kind of laughing this off. He thinks I'm just buying into a whole bunch of bogus stuff, I think. He thought the same of the omegas (we're still taking those...going on 3 weeks now, no real improvement) but for God's sake, SOMEBODY in this family has to do something. :banghead:

keegans_mommy
08-02-2006, 05:10 AM
WOW, keegans_mommy. That's quite a bombshell to be dropped on you! (The asperger's dx.) Can I ask how the hair sample will help them with the diagnosis? I didn't know there was any sort of physical test for asperger's or for any of these conditions. I am glad to hear that Tiffany's chelation is going so well. All this REALLY makes me want to get Colin to a DAN doctor...


It will put into a graph where your levels of heavy metals, essential metals and essential minerals all are in your body. Some of these are needed but only in certain amounts, some are NOT suppose to be there in ANY amount and some of the essential minerals are so low or so high they are causing behavioral issues.

For example:

Tiffany's metals were excessive in Aluminum and Mercury so that is why she is going through Chelation. She is also extremely high in one other essential mineral (can't remember what the weird name of it is at this moment LOL) She is super low in Zinc and several other essentials. These minerals help her out in quite a few areas, just not brain function. So it's a win/win situation either way you look at it.

So for me, I have opted for a blood/allergy test. I am finding that alot of behavioral issues, PMS symptoms, blemishes, and constant allergies CAN be allergies to what I am eating. I am waiting for these tests to come back soon. I haven't been able to *ahem* collect a hair specimin just yet but soon enough for that one. I am dying to see what I am lacking or have in excess of.

As for the CF/GF diet: we have done it and it's hard to do. You really have to pay attention to every label. Especially for dairy as it has so many different names! And wheat, it's in everything down to your hotdogs! Ahhhhhhh! We have found wheat free hot dogs at Whole Foods but we only make it there a few times a year. I DO Have a special diets cookbook that is practically brand spankin new that I can sell you if you want it. We have pinpointed Tiffany's sensitivity: Wheat. She behaves MUCH better when we avoid wheat, although we don't always and she doesn't always either (she's 11) but at least we know what helps her to behave better. :)

SoftBumBaby
08-02-2006, 03:40 PM
Thanks, keegans_mommy.

I don't think Kosher hot dogs have any wheat. Have you tried to find these? I believe Nathan's are kosher. So are Hebrew National. Just don't get the low-fat versions of either of these.

Somebody correct me if I'm wrong, though.

In order to make the diet easier, I'm doing it with Colin (did I mention that already? I think I'm starting to repeat myself :lostit: ). Anyway...we went casein-free shopping today (ETA: will be going gluten-free as well either next week or the following week) and got just a few things. Mostly wheat-ey things, but that's been half of Colin's diet anyway, you know? The other half has been basically dairy, and some apple juice. I am hoping to get him into fruits and vegetables (he will eat corn; that's about it).

Also ETA: There are some surprising foods on this "diet". Like many national-brand potato chips, Fritos, Skittles, Cracker Jacks (some varieties), peanut butter, juice. (Of course, some children have sensitivities to some of these foods, but that would be a very individual thing.) And then of course there are "regular" foods: store-packaged meats for the most part, vegetables, fruit.

SoftBumBaby
08-18-2006, 11:39 AM
So, hey, mommies...does anyone here have a developmental pediatrician?

I do have a name of a DAN doctor and am seriously considering it.

I wanted to also get a developmental ped. How weird is this: Colin's ped (regular ped) has "never heard of" a developmental pediatrician. :banghead: You're kidding me...And neither has Blue Cross, apparently.

But I'm on the hunt. I have feelers out on a few local boards I'm on. Anybody else done this? What was your experience?

mom2zephyr
08-23-2006, 10:31 PM
This is my first post here!! So I will answer the last post. My son is 11 and he has a "developmental ped". The only thing he does is see him every once in awhile for evaluations, and those pretty much stopped a few yrs. back. I went to a DAN dr. (the only one anywhere near me). And I was NOT impressed. I wish there was another one I could try, but there's not. I wasted ALOT of money and had a big list of things I needed to buy in addition. Yeah, I'm just as desperate as the next parent, but the money well does not run too deep! She gave me a bottle, charged me $100 for it, and told me to give it but not to tell my reg. peds dr. OK?? It was for chelation....oh I think that's important for other dr.s to know. We've done the diets, ALL the vitamins, minerals, and any other pill you can think of!
I still want to do neurofeedback, and auditory int. therapy. I think I have it in me to try just a few more things! I will say I took him off ALL his psych. pills (at one point he was on 3), and he does just as good.......progress

keegans_mommy
08-24-2006, 06:57 AM
Hey Sylvia- I am sorry you had a bad experience with the Dan doc, that isn't right. Did he/she do blood and hair tests BEFORE giving you the bottle for chelation? Because if she/he didn't he/she doesn't know what they are doing!

Chelation CAN deplete your essential minerals as they stand so our dan doc did the blood and hair tests to see the levels first, had Tiffany on the low essential minerals BEFORE doing chelation!!!! And she doesn't even take them every night, only every other night. The alternate nights she takes a heavy metal support. This is all to not strip her body of what it really needs but to remove what isn't needed.

It is expensive and we have had to take a seperate small loan to "fix" our child and it's been worth it so far! (she has Asperger's BTW ;) )

keithsmom03
08-25-2006, 09:44 AM
hmmm, i wrote this big entry this morning but i guess it didnt show:banghead: anyways, hey. how is everyone doing? i have been MIA for a while as things have been REALLY hecktic around here. i went to a second dr. for a second opinion. the dr. said that ds is NOT asperger's. he is high functioning autistic but on the lower high functioning end more like PDD-NOS he said. ds has been a mess lately, maybe it is because he is getting older, or worse, or maybe it is because i am noticing more things. idk. his behavior has definately gotten worse. i had his intake meeting for the school, on the 5th of september we have the evaluation meeting, and then like 2 weeks from that we will have the meeting that will tell me what he qualifies for. he will definately qualify for EC services according to the last meeting that we had. we are still doing 5 therapies a week right now, so my schedule is a little crazy, but hey it keeps us moving right? so how is everyone else doing? things moving along? keegans mommy youre doing chilation right? how's that going? iris you are doing DAN! right? hows that going? have you gotten in yet? and everyone else? any progress with the kiddos? anyone else have a school meeting? or starting school? well i g2g for now. ds is awake.

heather marie

drenotdoctor
08-26-2006, 09:03 PM
Hiya! I posted something in the parenting forum about issues with ds's school, but I think I should have posted here for your help! Here is the link:
http://www.diaperswappers.com/forum/showthread.php?p=250814#post250814

iris0110
08-28-2006, 07:26 PM
Keith'smom We got him in and things are going really well. We really love this Dr. So far we have done the hair and stool :yuck: analysis. We are still waiting on more results. In the mean time he is on a zinc cream, magnesium, epsom baths, acidopholus, and nystatin. The Dr thinks he has yeasty's in his intestines which is what is causing the rash issues. He is also thinking metal toxicities. But we will know more when the results come in. So far he is taking everything well except the Nystatin. I just can't figure out how to get it in him. I have tried hiding it in juice, pancakes, popsicles, and even soda to no avail. So for three days we held him down and forced it down him, but that was just too awful :cry:. Having to hold my baby down three times a day and force medicine down his throat was just too much for me. So I called the Dr to see if he had any other ideas. His nurse and I tossed a few around and then she said she would talk with him some more and call me back. We have been seeing some improvements. He is being more descriptive in his speech, and his rash is getting a bit better. So I am hopeful. Also thanks to the SSI we qualified for Medicaid and they will pay for him to get back into private OT and ST (for feeding therapy). Plus I was speaking with the medicaid social worker and she recomended a program called spirit horse (www.spirithorsetherapy.com) It's a non-profit group that offers riding therapy. So hopefully he will be doing that soon as well. And of course the speech therapy provided by the school district is back in full swing. After the mess we went through with the PPCD program last year I feel even better about my decision not to enroll him in Kindergarten this year. They didn't even argue with me too much on it. So that was nice at least. Still all these appts have me crazy busy. I thought it was hard getting him to all of his appts before, but now I have to get two boys and myself ready, and there are twice as many appts. Things are crazy in our house. But it is worth it to help him recover.

iris0110
08-28-2006, 07:38 PM
Dre, I wish I could help you, but I have had no better luck here. My oldest has PDD NOS, SID and a speech delay. And like you have said, what passes for "help" through the school system is really dissapointing. However I would love to have some one near me to chat with :giggle: . ECI here was really great, but it ran out when he turned three and then the school stepped in. They offer a PPCD pre-school classroom but it is just totally awful. He was in a class with 5 other kids lower functioning then him. They were all in diapers and they weren't changing them like they should have. He came home once in wet clothes, and another time he came home in just a diaper because they hadn't changed him and he had soaked through. He was only there for 2.5hrs once a week. I can't imagine how bad it would have been for him if he were there full time like they wanted. They were very pushy about it too, they really wanted the funding for having more kids so they were literally calling me abusive for refusing to enroll him. This year they are only giving him speech because I won't enroll him in their special ed kindergarten. I can't belive what they are putting these kids through.

Now as for outside assistance, we have some good stuff in the area. There is Our Children's House at Baylor which has several sattelite facilities in the area offering super private therapies. They have a social worker to help you figure out some funding and everything. There is also www.spirithorsetherapy.com which is a non-profit riding therapy program. It is completely free. There are also some good Defeat Autism Now! Dr.s in the area. We really love the one we are seeing. But it is expensive. We qualified for SSI for Kearnan to help cover the costs, and medicaid covers his OT and ST. I have been meaning to talk to a woman at my church who has an autistic son that I used to babysit some. The mormons come to her house and provide free in home therapy and respite care for her, even though she isn't mormon. There are also a couple of very active autism groups in the area, and the writer of the book the Out of Sync child is coming here soon for a lecture.

morganandevansmom
08-30-2006, 10:24 PM
Hello Mamas, My 4 year old daughter is on the autism spectrum. She was diagnosed last november. Development wise she is very far behind she started walking last october, isn't potty trained, only says about 2 words (ball and baby) but does babble, She has major feeding issues and won't feed herself all of her food has to be pureed or she will gag and throw up.
I was skimming all the posts and saw some things about allergies. What kind of test do I ask for to see if she has allergies? Also I have severe allergies but dont' know if I am allergic to any foods but have been having bad health issues and would like to get some tests done to.
Does a DAN doctor has to do them?

TIA

keegans_mommy
08-31-2006, 05:40 AM
I was skimming all the posts and saw some things about allergies. What kind of test do I ask for to see if she has allergies? Also I have severe allergies but dont' know if I am allergic to any foods but have been having bad health issues and would like to get some tests done to.
Does a DAN doctor has to do them?

TIA

Our DAN doc does them :) Some foods and suppliments can be delayed allergies, even up to 2-3 days delayed! So that is why some kids can perpetually have behavioral issues.

Now, Mothering magaize had a whole issue dedicated to autisim spectrum children and how they went to visit DAN! docs and they came back from autisim with Chelation. That is how we got started when we found Tiffany has Asperger's syndrome.

Anyway, after visiting this doc, Tiffany was able to go off her medication and now she's doing BETTER off the medication than on it and the Chelation seems to have helped. :) She still has issues but she is MUCH more managable than she use to be, has more friends now, gained a ton of weight (she was really super skinny and short!) so she is finally catching up to her friends.

Babyvan
09-15-2006, 10:56 PM
Hey mamas! I'm really late on this thread and have not read all the replies but wanted to say "hey" and that 2 of my 4 children are on the spectrum. I'm sad that there are so many of us to necesitate a sticky for this. My oldest is 13 and it was just starting to become more common then, there still wasn't much information out. There is so much now...unfortunately driven by the pandemic. 1 in 166 now. Tragic.

Anyway, my love to all you hard working, dedicated mamas!
Amy

betty_joanne
09-24-2006, 09:44 PM
Just wanted to add something to this thread. I don't have an autistic child(that i know of-she is only 12months as of tuesday).
Anways, my mom is a special ed aid and i basically grew up seeing the autistic kids a couple of times a year. Those kids are now in high school and it is so awesome to have my mom see them again and give me updates on them. The two girls have grown up and are much, much more focused now. They bake things at the school and do really well. They have periods and are very personal about it but take care of themselves. Also, they have outbursts still but geez what teenager doesn't.
As soon as one of the girls saw my mom (she hadn't seen her in 3 years) she said "Hi, Mrs. Bates". Talk about an awesome memory.

iris0110
09-25-2006, 11:40 AM
I just wanted to stop in and update on Kearnan

Thanks to the SSI and medicaide for the medically needy we had him reevaluated for speech, feeding and occupational therapy at our children's house of Baylor. It looks like he will be doing OT, and ST (feeding mostly) once a week there. They are trying to get the appts both on the same day so I don't have to keep running him over. Then of course he has speech at the school. We also have submitted an application to Spirit Horse, which is a non-profit therapuetic riding program. I expect to hear back from them by the end of the week.

The DAN! Dr. Dr M has him on some supplements and his test results are in. He has a nasty bacteria colonized in his intestines and a yeast problem. He also has no good bacteria at all in his gut. That is very bad because it means his brain isn't getting fed properly. So we are starting him on a special antibiotic as well as diflucan to get rid of the yucky stuff and upping his acidopholis to try and get him some good cultures growing. We are also going to start b12 shots which are supposed to help his speech. We have been seeing an upswing in his speech lately. His speech is becoming more age appropriate, and he is easier to understand. He is using more descriptive words and expressing his thoughts and feelings more easily. We have noticed a turn for the worse in his behavior. It is like he hit the terrible twos all of the sudden. But we knew to expect that things would get worse before they get better. Hopefully we will see more improvements soon.

His hair annalysis results were more concerning. He has a very high level of aluminum, which we kind of expected. What we are very concerned about is his mercury level. A normal person is exposed to mercury every day in what is considered safe levels. That mercury is then excreted and can be found in your hair, nails ect. Kearnan's hair shows no mercury at all. Now that could be because he has never been exposed, but that is highly unlikely. During the time he was getting his vaccinations they were just starting to take the mercury out of them. So many that he had still had mercury. Plus there is the trace amounts in the soil, water, food and even air that we are exposed to every day. So more likely is that his body is totally unable to excrete mercury at all. So it is staying in his body and poisoning him. To find out for sure we have to do a challenge test. Next week he will get one dose of a chelating agent (DSA) then for 24 hours we will collect his urine and then send it in. It will be tested for mercury and a few other harmful metals that may be in his system. If we see mercury dumping we will have to consider chelation therapy. If not I don't know where we will go. But the therapys we have been using are definately doing something. We are seeing results every day. Just last week every one got sick with allergy problems. Usually Kearnan is the sickest of us all. This time he was only sick for a day. I am still fighting it, and he is totally back to normal. So something is working. DR M is still very positive, and is thrilled wiht the progress we are seeing so far. He still feels that within the next 6-12 months we may have Kearnan recovered. He will never be totally normal, he will never be the child he would have been had this all never happened. But he will be able to function. He will be able to have friends, someday date, go to college, get married, have kids, all of the things we dream of for our children. He will probably still need therapy to get past some of the sensory things, and to address the behaviors that have become habits. But he will be well on his way to being better.

MommaBelt
10-09-2006, 04:28 AM
I was wondering if any of yo are still around :) I just saw this thread and wanted to introduce myself, MY DS is 2 and we got an ASD diagnosis last December when he was 19 months. We know this is an extremly EARLY diagnosis and we have taken him else where for all those multiple second opinions, but hte result is still the same. HE has become pretty high functioning, he says probably 15 words spontaniously and about 50 or so he can mimic. HE still has trouble relating one word to another a girls name Holly soon becomes HOlly-ween( halloween). He has been in speech and OT( a tons of sensory things are going on for him) and we are waiting for him to turn 3 since the levys here didnt pass and there is no early intervention program in my county :( Its nice to see other mommas here that are going through the same things :)
so hello :)

morganandevansmom
10-09-2006, 10:47 AM
I am so sorry to here there is NO early intervention in your county that is absurd. Where do you live? You are actually very lucky to get a diagnosis so young. My dd only got her diagnosis last november when she was almost 3.5.
Please keep us updated on your sons progress.
Its nice to meet you.

MommaBelt
10-10-2006, 02:28 PM
I am so sorry to here there is NO early intervention in your county that is absurd. Where do you live? You are actually very lucky to get a diagnosis so young. My dd only got her diagnosis last november when she was almost 3.5.
Please keep us updated on your sons progress.
Its nice to meet you.

We live in central Ohio in Marion County. I do feel very blessed to have gotten the diagnosis when we did. he has developed ALOT since the OT and ST. Alot of times children are not diagnosed until they reach preschool level and teachers can spot the symptoms better than a non medical/educational parent My pediatrician spotted cadens for the first time while he was tantruming at an appointment ( head banging, biting himself, spinning, etc) which started the diagnosis progress, then there was the educational diagnosis I had to fight for for him to get services then the levys didnt pass.. ARGH luckily we all got it somewhat under control. I thank that doctor, b/c I knew NOTHING about autism or the signs for it. IT does go undiagnosed alot b/c to the naked eye or people who arent around them alot they may just seem like high spirited kids. I STILL get the comments such as " hes just being a boy" "those Dr.s are nuts theres nothing wrong with him" :banghead:

keithsmom03
10-20-2006, 09:04 AM
im sorry that you dont have an early intervention type program too! that stinks! im glad that you are however able to get an early diagnosis because that can help you out in the long run to get all your ducks in a row and push for everything that your dc needs! i didnt get a for sure diagnosis until my ds was 3 but i knew long before that what was going on. i pushed for the early intervention and we started at 14ish mos which has helped him out a LOT. when i started with him he was so far behind it wasnt even funny, if they could have diagnosed him right then he would have probably been on the low functioning end. he didnt talk, or play or really do anything except for walk. he is now 3 1/2 and he talks pretty well, and was diagnosed and low end high functioning. he didnt speak until he was right at 2 1/2. it was very hard. he isnt potty trained still working on that, making a little progress which im happy with. and working on trying to get the bottle eliminated still, but it doesnt look too promising right now, he will do a little drinking from a cup at school but that is it.

heather marie

amielia80
11-07-2006, 04:39 PM
HI everyone!
I just saw this sticky and was so happy to see it ! I love to connect with other parents. We have been in the world of autism now for almost 3 years. my son was diagnosed at 3. He is doing very well with all his intense services, he is just starting to talk and he is doing better about touch and other sensory things. Eating is a HUGE issue with him as well as witholding BM (so forget about potty training) these are our biggest problems as it makes him sick. I feel like I am pretty alone most of the time so I am glad to find this thread on here. My younger son(19 months) is in EI with speech delay, but no signs of autism at all, they think he will catch right up.
Riley is a great kid and he is very smart! We just want to see him progress as best as he can!

iamweiser
11-30-2006, 03:59 PM
i just read thru this thread & i'd like your opinions if that'd be ok...
my son will be 2 in july, & i'm just starting to look into Sensory Integration Disorder, so i'm still trying to grasp everything.
we lost our daughter at 38wks gestation around Christmas, so part of me keeps saying "there's nothing wrong, you're just trying to FIND something to focus on", but i truly don't think so (& i've soulsearched about it)

after reading a bit & thinking back, CJ's had these lil "quirks" since he was a newborn, but just in the last 10mo it's becoming really apparent.
first off, no grass lol- aboslutely HATES grass, finally got him walking in it if he's got shoes on (sometimes lol), & 'weird' feeling objects, like kooshballs & slimey type things. we did paper mache & that took him forever to play with (but thankfully he did, it was fun getting messy).
at his 19mo well-check, they'd asked what words he was saying "even if you're the only ones that understand him" well at the time, i think we rattled off 10 or so? & clear they were NOT, but we'd figured out what he was TRYING to say & the dr. counted that. but NOW, he says 'dada'.... actually started calling me 'baba' (used to call me MaMa- dunno if losing the "m"s means much tho). once in a blue moon he'll parrot "yeah" & "ok" but all the other things he was saying alot at 19mo, he doesn't say anymore.
& we're finding it semi-common for him to beat on himself when he's upset/mad (but a friend of mine told me this was normal 2yo behavior?? we don't hit so it makes me feel awful as i know some kids that are hit do this to distract themselves from the environment).
he's got this obsessive touching thing that drives me CRAZY sometimes- the look on his face is almost as if he's not in full control when it happens tho, its' hard to explain.
& then this obsession w/ 'softies'??? lol i mean, i'm a touch person too- if it's soft, i gotta feel it & enjoy it, but if he sees a tag on anything (blankets, pillows, clothes, etc) he just disappears mentally- his only goal is to reach the tag & rub it in one hand while he sucks his fingers. it's gotten so bad actually that i made him some tag-rags w/ poodle fleece/polar fleece & satin tags all around the edges. & now its' gotten even worse that we have to make sure we have one ALL the time or he'll have meltdowns the whole time we're out. give him his rag tho & it's like turning the power switch off. & i'll find him all over our house in corners w/ his rag, sucking his fingers. i mean it's cute & all but it just feels so sad in my gut for some reason.
& oh- is it normal for a 15+mo to organize everything by color??? i was totally shocked when he did this- gave him some fruit snacks & he grouped em by color & ate each color before the next. & it's extended to all food (has to eat all one color then the next), & his toys, he'll put all the colors of his giant legos together, if they get mixed, he gets quite 'flustered' & tears them apart to fix them.

i should add he is my first child, but i constantly feel crazy/stupid/paranoid all at the same time b/c i have no clue what's average for kids this age.
i'm going to see about getting his hearing checked next month too cuz there's lots of signs of some sort of hearing loss too.
am i nuts here? am i looking too hard & these are just normal kid things??
thanks ladies
~marcia~

I just found this thread today, and did not have time to read all the postings. I want to comment on the above post first and then I'll get a little more personal. I think you should use caution with this fixation of his. It sounds like he is self-stimulating on the tags. Stimming out is a bad thing. Sometimes to us mom's with ASD or SID kids, it seems like "Wow, that spinning machine is helping him stay calm for a few minutes!" But stimming out in not healthy and you need to go the opposite way. Do a lot of OT exercises with different textures. On a bad day we used to mix corn starch and water (just enough so it was close to liquid but when you touched it, it became close to solid) and let him play in it with his hands until he had enough. It would turn a bad Friday into a calm Friday. And for clean up, wait till it dries and vacuum.

That being said, my background:
My ds is now 5. We noticed something wrong at 4 mos. I thought he could be deaf. I did many tests on his hearing and his response. What I found scared me. He wasn't deaf. He just didn't always tune in. He could attend to music better than anything else. Anyway, at 11 mos he was seen by a PT friend. She said she didn't think autism--our concern--but suggested several things to encourage speech and said to have formal evals done at 18 mos. We settled into our routines, and pushed our concerns aside. At 26 mos we were horrified by his behaviors at my sister's wedding etc. When he was next to typical boys, we noticed how different he was. At 2 1/2 he was diagnosed with Sensory Integration Dysfunction. We read the Out of Sync Child and began speech, occupational, play, and family therapy through ECI. We moved from NM to TX just before his 3rd birthday. He was transitioned into special ed at ps. They did the CARS test and diagnosed him as moderate/severe Autism. After 2 weeks he regressed in MANY areas. The teacher blamed it on me because after all she has her masters! I pulled him out. We did private therapy--only speech because the OT was terrible. I did his OT myself.

Due to his temper I read The Explosive Child by Ross Greene. Great book, though a bit misleading. He says that Oppositional Defiant Disorder is with these disorders all of us are talking about. Not quite true. But his methods and suggestions and stories are wonderful! His agression worsened. We feared for ourselves. It's horrible being scared of a 4 yo!

He was evaluated again about 8 mo ago by a developmental specialist. She did the CARS test. He was diagnosed with Mild Autism. He went on Risperdal (an anti-psychotic) for his agression and has shown such wonderful improvements.

I am homeschooling my dd who is ADD and 6 (she is non-medicated). I also do all David's therapy and schooling. He is behind in speech and social skills by 1 yr. We do a lot of pic stories about social skills and acceptable behaviors using MAS on http://www.do2learn.com. I have nothing to say but wonderful things about the company, their customer service, and the program.

Another WONDERFUL book: Helping Your Child with Autism Spectrum Disorder (a Step-by-Step Workbook for Families). Emphasis on Families! I talks about getting your ASD child to be a part of the family team. It wants all members of the family to contribute. I have begun using it and already see improvements in our family and my ds. Oh, and wonderful sign videos: Signing Time. Ds knew sign but never used it. When we used it, it helped him become more vocal. After buying the 1st Signing Time video, he now signs as he talks.

And we always got the comments too about David just being a boy. One ped even accused me of wanting meds because I couldn't handle my 2 yo son. I gritted my teeth and told him I wasn't leaving without the referal to ECI. My MIL also said, he's just like dh. What I got from that is that my husband is also special needs! :laugh:

allye
01-08-2007, 04:22 PM
my oldest son is high functioning autism . and oppesitional defiant conduct disorder, and autism spectrum, also non verbal learning disabled...

MommaBelt
01-12-2007, 08:37 PM
theres lots of us here! :hugs:

right now I am havign issues with Caden eating.. he just isnt eating anything ( other than his favorite and non healthy foods) and when we encourage him he just makes himself gag and throw up :banghead: I am giving him instant breakfast in the mornings and when he doesnt eat his meals.. but I know he isnt gaining any weight, just wondering if you all have suggestions

amielia80
01-14-2007, 07:34 PM
MAMA..I have been in the same boat with Riley for years. He eats about 5 foods. He is extremly picky and he is underweight. He was sent to the GI for failure to thrive and other GI issues. Does Caden receive any OT services? Riley gags like that too so it sounds sensory related to me. We have been working intensely with a wonderful OT to help him eat. Do you think it is certain textures he has a problem with? A good OT could really help with that. We were told that the next step is a feeding tube if we can't get him to eat..so I am hoping to find some answers myself. PM me if you want to chat about it more...it is very upsetting and most people don't get it.
:hugs: mamma....

SandyG
01-28-2007, 08:36 PM
if you Christian, iwanted to share a link that I got from our director this weekend. http://www.findinggodinautism.com/fgia.htm

turtlemoon74
01-29-2007, 09:26 AM
Today on The View (abc), the entire show is dedicated to the topic of Autism. I'm watching it now.

joyce
01-29-2007, 10:29 AM
I missed the show today but wanted to add My 2 1/2 yr old Daughter is Mid Level Spectrum. She started Speech therapy 2 1/2 weeks ago and I can already see improvements...shes very visual so shes picking up things quickly after we show and Direct her. She actually had a tea party with me and pretended to slurp her tea! :lol:

She has Sensory integration Disorder as well and I am currently going through the referal process to get her evaluated for OT.
Shes an AWEFUL sleeper lately and barely sleeps at all during the night, she went to bed at 11pm and was up at 5am this morning and wont go to bed till about the same time....have any suggestions? My husband said he wants to look into getting her a sleep aid but I dunno.

Cryssie
02-21-2007, 01:47 PM
I just wanted to say HI. My DS is 6 and also mildly Autistic.

amielia80
02-22-2007, 12:41 PM
I missed the show today but wanted to add My 2 1/2 yr old Daughter is Mid Level Spectrum. She started Speech therapy 2 1/2 weeks ago and I can already see improvements...shes very visual so shes picking up things quickly after we show and Direct her. She actually had a tea party with me and pretended to slurp her tea! :lol:

She has Sensory integration Disorder as well and I am currently going through the referal process to get her evaluated for OT.
Shes an AWEFUL sleeper lately and barely sleeps at all during the night, she went to bed at 11pm and was up at 5am this morning and wont go to bed till about the same time....have any suggestions? My husband said he wants to look into getting her a sleep aid but I dunno.



:hugs: to you mama..I have been there with DS. My DS also has SID like your daughter. Does she crave deep pressure? There are a few games you can paly before bed. here is a link (hope it works)www.coping.org/intervention/sensory/heavyactiviti.htm

some are for teachers, but lots are very helpful for kids with SID to held them relax and sleep..we have had great response from the hotdog game.
Also, have you tried wraping her tightly in her blanket or a heavy blanket on her to provide deep pressure? This has worked for my guy . We even have him wear spandex under his clothes and this has helped.

Hope some of that is helpful.

Kiddo353
03-07-2007, 05:07 PM
wow...I had no idea there were THIS many of us on here. My 2 older children have higher fuctioning ASD. My oldest is moderate, middle one is mild. With both SP & OT therapy BOTH girls have come a LONG way this past year. :hugs: to all of you b/c I know the struggle all of you go through to just get thru one day at a time. dh is also a marine and is currently deployed. HOW do you explain that to an autistic 4 yr old when she SCREAMS for daddy??:cry:

my2babyboys
03-07-2007, 05:58 PM
We have been working with my little guy since about 16 1/2 months trying to find out whats wrong with him. Everyone keeps shrugging us off as him having speech problems / aprhaxia. Fianlly someone listened to me and Oscar has a referral in to see a pediatric developmental delay specialist who also helps in the prognosis of autism. More and more I read about the "signs" of autism in children and I look back and they explain my little guy to a T. He stopped talking at 16 1/2 months of age and now at 3 1/2 cant say sentances. The most he can say is 3 words together and he repeats the things he can say over and over instead of trying to learn. he wouldnt wave or say bye bye till he was 2 years old and will sit infront of a game for 3 hours trying to beat the same spot in a v-smile game over and over. I could go on and on but the more I think about it the more I cry. Hopefully within the next months we will find out if anything more severe than just a speech disorder is wrong with him.
:hugs: to all you mamas who have children with autism, it was hard enough watching him struggle to talk and throwing tantrums over silly things like me not understanding he wants milk. I will keep everyone updated as I find things out, like I said im in the beginning processes of this and Im sure it will take some time to find out everything.

ETA: my 3 1/2 yr old also loves to kiss his daddy bye bye every morning and my husband is leaving for Iraq next Saturday so I will be going through all this on my own :cry: I have NO family or IRL friends here and they all live in PA which a ways away from CA.

SandyG
03-08-2007, 07:35 PM
We have been working with my little guy since about 16 1/2 months trying to find out whats wrong with him. Everyone keeps shrugging us off as him having speech problems / aprhaxia. Fianlly someone listened to me and Oscar has a referral in to see a pediatric developmental delay specialist who also helps in the prognosis of autism. More and more I read about the "signs" of autism in children and I look back and they explain my little guy to a T. He stopped talking at 16 1/2 months of age and now at 3 1/2 cant say sentances. The most he can say is 3 words together and he repeats the things he can say over and over instead of trying to learn. he wouldnt wave or say bye bye till he was 2 years old and will sit infront of a game for 3 hours trying to beat the same spot in a v-smile game over and over. I could go on and on but the more I think about it the more I cry. Hopefully within the next months we will find out if anything more severe than just a speech disorder is wrong with him.
:hugs: to all you mamas who have children with autism, it was hard enough watching him struggle to talk and throwing tantrums over silly things like me not understanding he wants milk. I will keep everyone updated as I find things out, like I said im in the beginning processes of this and Im sure it will take some time to find out everything.

ETA: my 3 1/2 yr old also loves to kiss his daddy bye bye every morning and my husband is leaving for Iraq next Saturday so I will be going through all this on my own :cry: I have NO family or IRL friends here and they all live in PA which a ways away from CA.
:hugs: im so very sorry :hugs:

Symphony
03-16-2007, 06:07 PM
Hello Heather,
I saw your post, which I don't usually read threads...so it's interesting that I ran into it!
I just read a great article in this months Discover magazine about new breakthroughs in studying autism and suspected causes. I am a special education teacher and have worked with a number of little ones with autism, now I work with home schooling parents with students with learning challenges, many are autistic, and with good consistent interventions these guys are showing great improvements!!! Check out that article, it was really interesting! And DEMAND only the best services and interventions. Studies show, the younger caught, the better the outcomes. And enjoy the quirks...they truly are the most UNIQUE kids!

Take care,
Symphony

my2babyboys
05-08-2007, 09:57 AM
We have been working with my little guy since about 16 1/2 months trying to find out whats wrong with him. Everyone keeps shrugging us off as him having speech problems / aprhaxia. Fianlly someone listened to me and Oscar has a referral in to see a pediatric developmental delay specialist who also helps in the prognosis of autism. More and more I read about the "signs" of autism in children and I look back and they explain my little guy to a T. He stopped talking at 16 1/2 months of age and now at 3 1/2 cant say sentances. The most he can say is 3 words together and he repeats the things he can say over and over instead of trying to learn. he wouldnt wave or say bye bye till he was 2 years old and will sit infront of a game for 3 hours trying to beat the same spot in a v-smile game over and over. I could go on and on but the more I think about it the more I cry. Hopefully within the next months we will find out if anything more severe than just a speech disorder is wrong with him.
:hugs: to all you mamas who have children with autism, it was hard enough watching him struggle to talk and throwing tantrums over silly things like me not understanding he wants milk. I will keep everyone updated as I find things out, like I said im in the beginning processes of this and Im sure it will take some time to find out everything.

ETA: my 3 1/2 yr old also loves to kiss his daddy bye bye every morning and my husband is leaving for Iraq next Saturday so I will be going through all this on my own :cry: I have NO family or IRL friends here and they all live in PA which a ways away from CA.

Im quoting myself just so if anyone wonders why Im putting this here.

My son had his appointment with the DDS yesterday. They ruled out Autism! They said the majority of his delays are because of his major speech delays. He just referred to him as having a major speech delay with characteristic developmental delays.
He said he has a big number of "signs" that are characteristic of Autism but that he is too advanced in other areas ( I guess that most Autistic children lack ) and he will send me a final report with an indepth explination on the whole meeting. We were there for 2 hours with 2 toddlers and it was very loud so I dont remember everything.
He is going to put him in a program that does OT and speech therapy together for 4 days a week and he will continue his therapy at the school he goes to. He believes the minimal amount ( 1 hr 45 minutes ) of therapy he gets each week is not enough for his severe delays. Only the 45 minute class is by himself and the other doesnt focus enough on him to really help him much.
So once he starts that class, he will have OT/ST 4 times a week, ST at school 2 times a week and come June 6th, my youngest starts speech therapy. I have no clue right now how I am going to make all those appointments, give Matthew his 3 hour nap in the afternoon and afford the almost $3 1/2 dollars a gallon of gas over here but Ill need to make it work.
The most important thing is Oscar gets the help he needs and hopefully the interventions will help him overcome his obsticles and it wont be a life long problem for him. The doc said he wont be able to give me an idea on that till he is about 7. They also changed his medication for his slow moving bowels and hopefully he will be able go more than once a week.
He is such a strong, funny wonderful child and I only ask God that he will stay that way, delays or not :)

drenotdoctor
05-08-2007, 10:19 PM
Im quoting myself just so if anyone wonders why Im putting this here.

My son had his appointment with the DDS yesterday. They ruled out Autism! They said the majority of his delays are because of his major speech delays. He just referred to him as having a major speech delay with characteristic developmental delays.
He said he has a big number of "signs" that are characteristic of Autism but that he is too advanced in other areas ( I guess that most Autistic children lack ) and he will send me a final report with an indepth explination on the whole meeting. We were there for 2 hours with 2 toddlers and it was very loud so I dont remember everything.
He is going to put him in a program that does OT and speech therapy together for 4 days a week and he will continue his therapy at the school he goes to. He believes the minimal amount ( 1 hr 45 minutes ) of therapy he gets each week is not enough for his severe delays. Only the 45 minute class is by himself and the other doesnt focus enough on him to really help him much.
So once he starts that class, he will have OT/ST 4 times a week, ST at school 2 times a week and come June 6th, my youngest starts speech therapy. I have no clue right now how I am going to make all those appointments, give Matthew his 3 hour nap in the afternoon and afford the almost $3 1/2 dollars a gallon of gas over here but Ill need to make it work.
The most important thing is Oscar gets the help he needs and hopefully the interventions will help him overcome his obsticles and it wont be a life long problem for him. The doc said he wont be able to give me an idea on that till he is about 7. They also changed his medication for his slow moving bowels and hopefully he will be able go more than once a week.
He is such a strong, funny wonderful child and I only ask God that he will stay that way, delays or not :)

I am SO UNBELIEVABLY HAPPY for your family! what a relief! I'm :cry: over here, because I know the struggle your ds and the rest of the fam won't have to go through. Yay! Hoping his therapies go super- awesome-rad!... and good for you for being so on top of it!!

my4blessings
05-09-2007, 08:35 PM
Hi, I just found this thread while tryng to decide where to post these questions. My oldest dd (5yo) has just recently been diagnosed with Aspergers Syndrome. She has had a rough life already with kidney surgeries and then being diagnosed as hearing impaired (which she is not....she wore hearing aids for 2 years for NO reason!!!!!! Turns out it was because of the AS.)

Our insurance is not wanting to pay for services, but sent us to a Child Psychiatrist this week. He wanted to put her on Ridelin(spelling). I refused, because I have seen what that can do to kids....but now I am wondering, are other AS kids on Ridelin? Is it normal?

Also, we had a rough evening tonight while my younger dd was in dance class. Other kids Madilyn's age are starting to realize that she is different. And some of them are down right mean!!! Tonight, one of the other little boys told her she couldn't play with them, because she is stupid!!!! I was so mad....and then the boys mom said nothing and I know she heard!!!! So then the other kids started teasing her also. This went on for about 5 minutes (seemed like an eternity). She is a brilliant child (can already read and write) and her speech has come a long way, but she is still very lacking in social skills. How do you handle it when other kids tease your kids? It also has just started bothering her...she got very upset tonight and we ended having to go wait in the car, because she started into a fit. But, I would really like to see how some other mom's handle it. I don't want her to have to live her life in a bubble away from other kids, but I also can't watch her have her heart broken. Please help! Thanks for letting me vent!

iris0110
05-09-2007, 08:55 PM
:hugs: I'm sorry mama. It was so hard when kids first started noticing that Kearnan was different. It is just getting to the point where it bothers him when other kids shun him, though alot of times he doesn't understand what they are saying. Kids really are mean, even really young ones.

In my opinion you aren't going to find ridellin helpful. I don't think you will be finding the psychiatrist helpful unless she is depressed or having other emotional issues in conjunction with her ASD. Some children with ASD's do need medicated, but many do not, and I think the vast majority who are are given the meds in error to make them easier for the schools or parents to control. You need a developmental pediatrician. Can your regular pedi refer you? We have a hard time getting things covered as well. You have to do it all just right. Some insurances cover better with an autism diagnosis, others won't cover "developmental delays" :banghead: . Is she in school? You should be able to get her some services through the school district, some are better than others though. Look up Individuals with Dissabilities education act (IDEA) and Free Appropriate Public Education (FAPE). That will get you started anyway. Kearnan has PDD NOS which is a bit further down the spectrum than Aspergers, but he is on no psyciatric medication nor does he see a psychiatrist. He does see alot of therapists though, and he really needs a behavioral therapist but it isn't covered by insurance. Alot of states now have laws requiring insurance companies to provide therapy coverage for autistic children, and more states are trying to legislate them. Now that doesn't mean that your state does, or that it will cover all of the therapies you might want or need, but it is something to look into.

ASD is a really tough journey and a tough diagnosis to handle on your own. Check in to some local support groups as they may also have ideas on how to get your daughter the services she needs. :hugs:

my4blessings
05-09-2007, 09:27 PM
I am making an appointment with our ped again tomorrow to see what else I can do. We are military and tricare (our insurance) told me that they don't cover Autism spectrum disorders. That's why they sent us to this child psychiatrist. I truly don't believe she needs meds. She is hard to control some times, but I would rather deal with it than give her unnecessary meds. She is a very happy energetic child and I don't want her to become numb to everything.

She is in special ed preschool at a public school and receives ST, OT, and play therapy at school. They are going to try to get her into a social skills therapy group next year. The school said most of the kids in the group were older and more impaired, so they are going to try to get another group going next year with some of her peers. The school has been really good, but they don't have anyother AS kids, however they do have 2 Austistic children in the older grades. Madilyn will be starting Kindegarten in the fall in a regular ed classroom with pullouts for her therapy. Our pediatrician even told us that we live in one the worst areas for special needs children education. That makes me so sad. We will be here another 2 years, and I really hope they are able to help her and not just let her slip into the cracks, like at the beginning of this year in Pre-K. Her regular ed Pre-K teachers just kept telling me she was a horrible discipline problem and couldn't be controlled. I have always known that something wasn't quite right, but the doctors we had just kept telling me it was all related to the hearing loss (that they misdiagnosed!). That is what led me to talk in more detail with the speech therapist she has this year (she is great)... She started the ball rolling in getting Madilyn tested. But she will not be back next year.... So I hope we are not back to square one.

Also, if you have children younger than your ASD children, how do you explain that to them? My 3 yo DD is already complaining that Madilyn gets special rules in games (this avoids her meltdowns). Just curious...

I am so glad I found this....it really helps knowing that I am not alone. I have not been able to find any support groups in our area. Thanks mamas!

amielia80
05-14-2007, 07:35 AM
:hugs: mama I am so sorry to hear that, it borke my heart. We have never had anything like this come up yet with Riley and he is going to be 6. I think that he won't notice or care , he takes NO interest in other kids at all. Even his own brother! Sounds like you are doing all the right things for her and are very sensitive to her needs and that is so important. Riley has autism and he does see a psych. (spelling) and he takes Risperedol(an antipsycotic med) but he has severe self injurious behaviors and possibly Bi-polar as well. Each child is different, but you would know if Ritalin isn't right for her fairly quickly by her behavior. I have had to fight my insurance company to pay for therapies...write letters ever day and appeal them as well as call non-stop and complain. Also, do you have any state insurance you could get her on because of her dissability? We live in MASS. and we have Mass Health as a supplimental insurance for Riley becasue he is disabled. They pick up co- pays and perscriptions which is very helpful when you have a child with such high needs. Good luck,and you are NOT alone!!!
:hugs:

p.s. I wanted to add that I have not explained anything to my 2 year old yet as I don't think he understands yet, but I have wondered often about this too. He will surely get mad that his brother gets special treatment. I would like to hear from other mamas how they handle that too!

shell62995
05-15-2007, 02:58 PM
I just wanted to say Hi. i never posted here(always spending all my money in the aio's!!) I have an 11 yr old hfa son.

DiaperDiva
05-22-2007, 03:57 PM
my son is 21 months and too young for a diagnosis however they think high functioning autism as well. he has speech therapy once a week, and occupational therapy twice a month. we also have someone who comes to our home 3 hours a day 3 days a week to work with me and him. insurance covers the therapy, we are paying out of pocket for the help we get 3x a week though. If you need someone to talk to, im here. i really need someone to talk to who is in the same boat as me. I am also a member or www.dailystregnth.com its a great site, they have a board on autism.

my son started off normal until sometime before he turned one. He stopped saying mama and dada. he doesnt repeat words. he doesnt mimick faces. he spins, stacks things, bangs his head (HARD). He rocks and goes ahhhhh ahhh ahhh. He does not try to communicate (no babble, no gestures). Doesnt like to be held or touched. Hates teeth brushed, hands washed, feel of sand, grass, or other textures. but thse things can be normal too. He is almost 2 and he's like a one month old. He didnt wave until 16 months and now he doesnt wave as much anymore. he used to say "i i i i i" fr hi and bye while waving. now IF he waves (big if) its "ah ah ah ah"

If my son is contently playing and you so much as tiptoe past his room he oes into afull force temper tantrum. he has his bouts of nightwalking and night terrors, but if you try to console him he freaks out more.

some days he seems so normal though. the other day he gave me a hug. i cant remember the last time he hugged me.

he used to give hi five but not anymore. he used to clap but not anymore. he used to do a lot of things. he's been regressing. its all a lot to take in. there are some things you cant even really explain. peopel who see him in pictures think "he looks fine to me" but its something most peopel couldnt understand unless they lived with him . its a ery hard thing to deal with, especially so young everyone wants to tell you "its cz he's a boy" or "he'll catch up"

i love my son no matter what and i KNOW he will be okay, and thankfully they think he is hugh functioning and he wont have too hard a time when he gets older. people might just think he's "weird". but i know there is a very bright boy inside trying to shine through!

it can be hurtful sometimes when poeple try to say your child is fine when you and the dr's both know he's not. im sure they mean to put your mind to ease, but it makes me feel like they think its SO bad for him to be autistic that i should be in denial? its not THAT bad. Yes its hard, and im sure very difficult in more severe cases of autism, but autistic kids are still kids who are loved. they may have a harder time showing they love us back, but they do.. they still have a lot of love inside of them, possibly more.

ill stop here sorry for the ramble.

keithsmom03
06-03-2007, 03:48 AM
wow ladies its been a LONG time since ive visited the board. life got a little (well ok a lot) hecktic here for a while. we went to visit my mom over christmas vacation out in las vegas, my sister and my two brothers from my mom were there as well. my mom lives with my aunt and uncle and it was actually a pretty alright visit overall. keith was really overwhelmed at a lot of things, especially how many people were around, thankfully they have a guest house on the property and we had our own private room in the guest house to stay in the 2 weeks that we were there. when we got to the airport there keith was quite overwhelmed and overstimulated. he wouldnt even go near my mom or sister. he clung to me for dear life!! my mom was hurt but i told her that he would just have to warm up to her and it would take him time. just to talk to him a little and go from there. overall the trip was good, he had a lot of overstimulation problems but i worked it out. he has been in a pre-k autistic class since the beginning of sept, school is almost out for the year, but he has made a nice amount of progress. he still has a lot of behavioral issues but hey thats ok, he still isnt potty trained or anywhere near it but that is ok too, he is talking more now but isnt holding conversations (which is expected) and cant answer questions, but his speech therapist is working on that with him, he has made progress in his speech which is great!! he is doing good with floortime therapy (he still sees a behavioral mod therapist {bhmt}) and is making some progress!! life has been busy but im loving it and i have been spending a lot of time learning new things, and ways to deal with things. it is a lot different than how i "felt" a year ago. i have learned however that though keith was diagnosed with "high-functioning" autism, he isnt high-functioning, but he had to be put into the "high-functioning" category because of his speech. in every other aspect he is lower functioning, but that is ok. i am ok with everything in his and my life, and we have turned over a new leaf so to speak. from the time i learned of the actual diagnosis up to now i have come a long way on things. it is amazing what you can learn in just over a year's time. i have had a really great group of mommies that have been VERY supportive through the very trying times that i have gone through which has really helped me to get through the tough times, cus we all know that there are tough times, but hey there are with all children right?? ive accepted the fact that we may not be able to go to the park when it is full of other kids, and that we cant just go to the mall and hang out or chill when shopping, that was pretty hard for me at first (the park part that is), but you know little man just does NOT miss that one bit. we go to get togethers with moms of other special needs kids on occasion (most of the kids are autistic as well) and the playdates go pretty well there because the parents truely understand, which feels great. we are still on the bottle, but i really dont care, its his comfort, and his form of support when he gets upset and im accepting of that as well. he will drink juice from a sippy now (unless he is super upset and overwhelmed) which is progress!! he has also been put on a vitamin supplimental drink to help maintain a good weight, he is still mostly on stage 2 baby food, and im alright with that now too. its amazing how we teach ourselves to be ok and accepting of things when things change. all in all, though hecktic life IS truely good!! i have made a lot of changes and done a lot of "soul searching" in a sense. keith has been out of occupational therapy since school started which really stinks (it wasnt by choice, but scheduling conflict), and it has thrown him off, but i do the best i can to work on things at home, ya know heavy work, and vestibular stuff etc. he has issues with his ankles and feet, and we tried out what are called smo's but they did NOT work, his ankles continued to get worse (they are very weak and when he is standing they buckle in for lack of a better word). so we ended up having to do what is called afo's. they are helping to stabalize his ankles and feet a LOT better now. he has had the afo's for almost 3 weeks and for once in his life he can run without falling flat on his face every 3 or 4 steps!! that and he is doing better walking up and down stairs (he couldnt even attempt this a year ago). i cant believe that a year has flown by so fast!! it seems like just yesterday i was celebrating his 3rd birthday, and shortly before that his birth!! well anyways, enough jibber jabber from me now, how has everyone else been doing??!!

heather marie

amielia80
06-04-2007, 02:43 PM
wow, I am so glad to hear that things seem to going good with you and your little guy!

amielia80
06-25-2007, 11:50 AM
we just started methyl B12 injections with DS has anyone else done these or heard about them?

iris0110
07-15-2007, 10:20 PM
We have been using the Methyl B12 with Kearnan for closing on a year now. It is amazing!!! Just after his fifth birthday we met with the DAN! DR and started treatments. At the time he was 3yrs behind his peers in speech, and a year to two years in self care, socialization ect. In just 6months with the Methyl B12 he went to only 6 months behind his peers. These days his speech is just about where it should be. IT is true that he tends to be more in the here and now then thinking of other times ect (does that make sense?). You can have a pretty normal convo with him he just doesn't really get the less concrete things. But he can make up stories and tell them and when he plays with toys he uses his imagination and they talk to each other ect. He is mostly understandable when he talks now. Unless he is particularly tired or upset, but he is understandable about as much of the time as other 5-6yr olds. It is amazing. His therapists and everyone who knows him are jsut so impressed with his progress. And he has been doing better in other areas as well, partially because of the other supplements we are doing.

beautiful8
07-19-2007, 10:17 AM
I have DS on who is Asperger's, PDD NOS Dx's.

We have had *issues* with him sinec he was 10 months old...ever understood why.

We got his DX last year finally at the age of 8.

He is on meds because without it, he is way less flexible than with ( which isn't much sadly :giggle: ), and he takes melatonin to help him sleep at night because he has never been able to sleep well...ever.

I have worked hard this past year to get him help through the schools system and I advocate for him pesonally. It has been a huge incredile emotional battle with the school system...omgosh, last year was AWFUL. We are finally getting some help and assistance not only formt he shcool but the state as well.

My son...is only imparied socially, and in no other way but his social skils are nill at best, hence why people want to label him something else (like ODD :banghead:).

One book I highly reccomend to any parent is *How to parent your asperger child* This book taught me so much about HOW to handle him and prevent crisis mode.

Dylan...is a runner :( When he is upset, he runs. It's AWFUL. But, we are learning his trigger points, and how NOT to set him off.

I am always looking for support formother parents who are going through it. My sons mind is amazing, he is genius level, doing math 4 grades higer than he should (makes his big sister so mad :laugh: )...but he is a GIFT and such a blessing.

Anyway, just wanted to say hi and share our story :)

Cryssie
08-27-2007, 10:29 PM
I've not posted here for awhile nor shared our story.

My Stepson (but he's MY child!) was diagnosed at 18 months and started therapy at 22 months. I've been in his life since he was 2. He just turned 7 and is in first grade. He is in the class 96% of the time only coming out for speach working on social stories. He does have an aide part time inthe morning to help with the comprehention part.

His math skills are off the mark, but his verbal and social is our biggest issue.

However, this child has improved so much. All he used to do was lay on a rug and roll a car back and forth or open the garage door of a toy house. He did not talk until he was 4, did not give hugs, nor try to communicate with us.
The child we have now is such a blessing, but it came with a lot of work and sacrafice.

We've done 8 hrs of therapy with ABA for years between therapist, school, and us. It has been a long long road. We are now done with ABA and only have one therapist that comes to our house. It's so hard for me to believe that.

*hugs* to all. It is a blessing to know others here to share our stories and heartbreaks.

bug2003
09-15-2007, 09:33 AM
Hi there. My son, Brandon, is 4 years old. He was first diagnosed as having PDD-NOS by a social worker at an autism preschool, but then we were able to get in to see the psych at the autism clinic at the University of Utah hospital (it was a REALLY long waiting list). She diagnosed him as high functioning autism and I agree with that so much more than the PDD-NOS one, especially since she's more qualified to actually give a diagnosis.

His first diagnosis was given at 3.5 and the second was closer to 4.5. The psych also said that he has more anxiety than is normal in even autistic children and he's showing signs of OCD. So, while generalized anxiety disorder and OCD aren't technically diagnoses she feels that he may be diagnosed as such later when he's a bit older.

mengmommy
09-17-2007, 11:44 AM
One book I highly reccomend to any parent is *How to parent your asperger child* This book taught me so much about HOW to handle him and prevent crisis mode.


I LOVE this book. Reading it has taught me SO much...including the fact that *I* likely have Asperger's also. Ds just started a sn preschool and is in the process of getting eval'd. They've so far said he *may* qualify for services in social, play, motor, and sensory areas. Eating seems to be our biggest hurdle at this point.

House of Blue
09-17-2007, 12:10 PM
My 7 year old is on the spectrum and we are satisfied with how things are going right now. I more than suspect one of my twins is as well but it's an up hill battle getting a diagnosis. He was given a 20 minute ADOS test which he "didn't appear to be on the spectrum" and that's it. I think that test is a huge load of horse crap and designed to keep families from tapping into services or stalls their entry into services to minimize total cost (most services get cut off by the age of 6) They won't investigate it any further. It's been very frustrating. He's 3 and starts school next year and I know the first thing the school will say when he completes his 1st week is that he needs to be tested for ASD.

I've been keeping clip after clip of his "off" behaviors. I've been keeping a journal trying to keep track of his obvious regression. Here are 3 clips...

http://smg.photobucket.com/albums/v251/munchkinmaker/?action=view&current=125ef964.flv

http://smg.photobucket.com/albums/v251/munchkinmaker/?action=view&current=2004_0125HeritageFest20070003.flv

http://smg.photobucket.com/albums/v251/munchkinmaker/?action=view&current=fd900721.flv


If anything I'd love a diagnosis, if it's Autism or something else I'd love to know what I'm dealing with so we could deal with this properly. As it is he's choosing these little routines over interaction more and more and I'm able to pull him out of it less and less. HE has more quirks than I care to list, all are magnified with age.

beautiful8
09-18-2007, 03:07 PM
just wanted to post the correct info on that book I reccomended awhile back, here it is:

It's called "Parenting your Asperger Child"

sub title is
"Individualized Solutions for Teaching Your Child Practical Skills"

by Alan Sohn Ed. D. and Cathy Grayson M.A.


this has been a GOD SEND to us. Matter of fact I am re-reading it this week because my ds has taken to manipulating big time to control his environment. It's been really difficult between that and the change from summer break to school the past 2 weeks (never mind that I am in baby having mode right now :blush: )

If anyone wants advice, help,...just ask!!
I advocate for my ds through the school system and while I don't know everything, my ds is almost 10 and we are learning right along side him each and every day :)

beautiful8
09-18-2007, 03:09 PM
I LOVE this book. Reading it has taught me SO much...including the fact that *I* likely have Asperger's also. Ds just started a sn preschool and is in the process of getting eval'd. They've so far said he *may* qualify for services in social, play, motor, and sensory areas. Eating seems to be our biggest hurdle at this point.

o my gosh isn't that amazing? :)

my dh and I are the same way, my dh is FAR worse :giggle:

I tell him all the time his autism is showing :laugh: (it's in jest obviously, but we both giggle about it because he really truly is in many ways...)

beautiful8
09-18-2007, 03:11 PM
We have been using the Methyl B12 with Kearnan for closing on a year now. It is amazing!!! Just after his fifth birthday we met with the DAN! DR and started treatments. At the time he was 3yrs behind his peers in speech, and a year to two years in self care, socialization ect. In just 6months with the Methyl B12 he went to only 6 months behind his peers. These days his speech is just about where it should be. IT is true that he tends to be more in the here and now then thinking of other times ect (does that make sense?). You can have a pretty normal convo with him he just doesn't really get the less concrete things. But he can make up stories and tell them and when he plays with toys he uses his imagination and they talk to each other ect. He is mostly understandable when he talks now. Unless he is particularly tired or upset, but he is understandable about as much of the time as other 5-6yr olds. It is amazing. His therapists and everyone who knows him are jsut so impressed with his progress. And he has been doing better in other areas as well, partially because of the other supplements we are doing.


what is this? :)

apmommatnt
09-26-2007, 10:56 AM
Hey mamas, I am glad I stumbled across this post...my ds is 15 months now and they are looking at several different spectrums from Global Developmental Delay, to autism...He receives therapies from EI every week (mostly play therapy) and we are on the waiting list for OT/PT. We are at the cusp now where we need to decide wether we want to have an MRI done. I have 1 month to decide when to set the appointment, it is a toughy for me. I don't want to do anything unneccessarily, since he will have to be put under general anesthesia...so, I think we are going to wait until it is a bit more definitive, possibly around 18 months or so.

Has anyone else had the MRI? What are your thoughts, I am really in need of some feedback here. Thanks mamas!

Also, for moms whose sons/daughters did finally get a diagnosis...what are some precursers I should keep my eyes open for? Symptoms and such? Thanks again for all your help!

iris0110
10-17-2007, 06:45 PM
Well Kearnan had the MRI when he was two. He did not get general anesthesia as I wouldn't allow it. Too many risks to be worth it for an MRI in his case. of course every situation is different and for some kids an MRI may be very important for their health. In Kearnan's case I knew that the chances of learning anything from it were small and not worth the risks of the anesthesia. As it turned out he didnt' need the anesthesia anyway. He had a bunch of tests at the childrens' hospital that day and one of them was a sleep deprivation EEG. So he was up late the night before, up very very early in the morning and not allowed to sleep before the test (which was supposed to happen at 6AM but didn't happen until 8AM because they lost the woman who was supposed to perform it, just one of a dozen things that went wrong that day. :banghead: ). He had his MRI and ABR schedueled for 10AM. We didnt get there till 11 because of the problems with the EEG. So he hadn't had more than maybe an hour of sleep in the past 12hours, and not enough before that either. I was originally going to let them go ahead and do it, because we were concerned, but then I was told that I wouldn't be able to go with him if he was under general anesthesia, and considering they had already lost an adult employee for two hours I didn't trust them not to lose my son somewhere in that hospital. It turned out not to matter (though I seriously pissed off the anesthesiologist who went as far as calling me a bad parent for not agreeing with her), he fell asleep as soon as the anesthesiologist left so the tech said we shoudl just try it with him asleep. THey put earphones on him playing white noises and left him covered with his fleece blankey and he never even woke up. He made it all the way through the ABR as well. HE didn't wake up till they did the blood work an hour later. So it is possible to do a MRI on a small child without general, but you have to use a few tricks to get it done. I'm glad we did it that way, and it turns out I am glad we did it. The MRI showed evidence of brain damage correlating to the time he had his MMR vaccine. The pedi neuro says that the vaccine caused encephalitis which caused lingering damage and his autism symptoms. OF course in the long run that doesn't matter much. Having that info answers some questions, but it doesn't change his treatments. There is nothing specific that we can do knowing that that we couldnt' have without it, and it wasn't going to do any more damage if we never found out. So totally not worth the risk of anesthesia, but fine under the circumstances we had. The pedi neuro told us going in that he didn't expect to see anything on the MRI at all, but they do them to rule things out more than anything.

I can't really help you with symptoms. With Kearnan it was pretty obvious what was going on. He was normal one day and the next he wasn't. It's noticeable when a child who could speak in full sentences suddenly can't communicate at all and spends all day screaming this unearthly scream. We knew something was not right. But autism is a spectrum and there are so many symptoms, and some of them are normal behaviors that are just extreme in kids on the spectrums, like lots of kids occasionally flap their hands, but for some kids it is constant and a stimmy. Lots of kids spin in circles, but for some kids it is something more. So it's hard to say. Have you looked at some of the websites with the checklists on them? Really though 15months is very young for a spectrum diagnosis. Some of the symptom's necessary to differentiate between a global delay or a spectrum disorder wouldn't be apparent yet at that age.

iris0110
10-17-2007, 06:57 PM
what is this? :)

Methyl B12 is a vitamin injection. Kearnan is defficient in b12, probably partially because of his very extremely self limited diet, and partially because he just can't process oral b12 properly. B12 is also a methyl donor. In children with autism it allows the veil to lift for lack of a better way to describe it. It helps them open up and understand what they are hearing, and learn from it. Kearnan has made tremendous leaps while on it. But I notice if we miss a week of shots he doesn't backslide as far as his speech goes, but he becomes more easily distractible and has a harder time following directions. Usually he can follow a simple series of directions like "go to your room, get your blue shoes, put them on and come back here." If we miss the shots the directions need to be broken into shorter steps like "go to your room. Get your blue shoes. PUt on your blue shoes. Come bakc to the living room." with him needing to complete each step before the next direction is given. He just can't seem to keep it all together as easily when we forget his shots. But his improvement has been dramatic. We jsut got his speech eval back (we need one each year to keep the insurance paying for his feeding therapy, we put it through as speech and feeing, but we only do the feeding). Last year he was moderate to severly delayed rating 3yrs behind his peers (or in the speech path of a 2-3yr old, he was 5 at the time). His new review was not totally completed because in many areas he never actually hit a ceiling measure, so they were artificially lower than they should have been. He is now listed in the normal to mild delay. He is 6months behind his peers putting him in the 5-7yr old speech range and he is 6yrs old. His biggest problem is with pronunciation of certain sounds, his vocabulary is actually more like a 9yr olds. He also is struggling with putting the ed at the end of past tenses, but that is it. Other wise his speech is normal for a boy of his age. That is tremendous improvements without the benefit of speech therapy. He is also doing much better at self care and social interaction, some from the b12 shots and some from therapy and other supplements.

beautiful8
10-20-2007, 04:52 PM
Methyl B12 is a vitamin injection. Kearnan is defficient in b12, probably partially because of his very extremely self limited diet, and partially because he just can't process oral b12 properly. B12 is also a methyl donor. In children with autism it allows the veil to lift for lack of a better way to describe it. It helps them open up and understand what they are hearing, and learn from it. Kearnan has made tremendous leaps while on it. But I notice if we miss a week of shots he doesn't backslide as far as his speech goes, but he becomes more easily distractible and has a harder time following directions. Usually he can follow a simple series of directions like "go to your room, get your blue shoes, put them on and come back here." If we miss the shots the directions need to be broken into shorter steps like "go to your room. Get your blue shoes. PUt on your blue shoes. Come bakc to the living room." with him needing to complete each step before the next direction is given. He just can't seem to keep it all together as easily when we forget his shots. But his improvement has been dramatic. We jsut got his speech eval back (we need one each year to keep the insurance paying for his feeding therapy, we put it through as speech and feeing, but we only do the feeding). Last year he was moderate to severly delayed rating 3yrs behind his peers (or in the speech path of a 2-3yr old, he was 5 at the time). His new review was not totally completed because in many areas he never actually hit a ceiling measure, so they were artificially lower than they should have been. He is now listed in the normal to mild delay. He is 6months behind his peers putting him in the 5-7yr old speech range and he is 6yrs old. His biggest problem is with pronunciation of certain sounds, his vocabulary is actually more like a 9yr olds. He also is struggling with putting the ed at the end of past tenses, but that is it. Other wise his speech is normal for a boy of his age. That is tremendous improvements without the benefit of speech therapy. He is also doing much better at self care and social interaction, some from the b12 shots and some from therapy and other supplements.



well, can you get this vitamin from certain foods?

I just signed on to becomea juice plus distributor...and my ds is one of the next ones to start taking it. I know it has pretty much all you need in there, I am assuming that the b12 is in there too....

btw, in case you have never heard of juice plus, it is supposed to reprogram their metabolism's making them want to eat the foods they otherwise reject. ;) At least thats what I have heard...

iris0110
10-21-2007, 04:06 PM
well, can you get this vitamin from certain foods?

I just signed on to becomea juice plus distributor...and my ds is one of the next ones to start taking it. I know it has pretty much all you need in there, I am assuming that the b12 is in there too....

btw, in case you have never heard of juice plus, it is supposed to reprogram their metabolism's making them want to eat the foods they otherwise reject. ;) At least thats what I have heard...

Normal people can get it from foods, and even people who are defficent can usually get it in a vitamin or sublingual dose. But some people cannot absorb b12 orally. This seems to be a problem for Kearnan. It was explained to me like this. Ideally you would get your B12 from food, that is the optimal source, however if you are not getting enough from food the second best source is the shot, after that is a pill or sublingual. So because he can't get his from food the shot is the best place. And in children with neurological disorders who need the methyl donors it doesn't seem that the food source is enough.

I've never heard of juice plus. I will look at it, but since Kearnan won't accept anything but orange juice to drink I don't know that we can do it. The zinc is supposed to help him be able to actually taste his food, and the B12 makes him more receptive to trying new things. I do think it is helping, he is definately trying alot of new foods in therapy. He is even eating some of the just tomatos fruits at home now so that is a huge step for him.

beautiful8
10-26-2007, 09:20 PM
oh it's not something you *eat* it's a capsule that has the equivalnet of 15 fruits and veggies in it that you take ach day...AND they have a gummi version for little kids :goodvibes:

They say it can reprogram your metabolism....seriously.

Dr.Sears is a spokesperson for the product. I have been on it for a few months ( I had HORRIBLE m/s with my last baby and it helped me tremendously!!) now as have a few of my ADD & ADHD kids and my autistic son is going on it next...if youwant more info PM me:)

drenotdoctor
10-27-2007, 12:03 AM
in case your questin wasn't answered about what a DAN! doctor is...

http://autism.about.com/od/alternativetreatmens/f/dandoc.htm

Micah also has a great DAN doctor. She is in Florida, but we live in WA. when we started going to her, it was only about an hours drive. Now we have phone appts and are supposed to fly back once a year. (but it's not necessary). We have had such tremendous success with her and Micahs progrees is steadily gaining. I HIGHLY recommend looking into finding one.

Suzi
10-30-2007, 10:56 AM
Hello ladies,

I didn't see this group until after I posted on the general parenting forum. My GP and the ENT are both concerned that my 20 month old may have autism. We are getting tubes put in Friday to help with his hearing. However, Benji still has some signs
doesn't point at anything
doesn't bring me stuff
is oblvious to all other kids (except his brother some times)
doesn't follow any directions
hasn't caught onto any signs or made up any of his own

About the only thing he did do that they asked was he plays peek-a-boo.

Any advice, things to watch for. I saw the reference for the asperger's book would that be good for me as well, any other suggestions?

frogandtoad
10-30-2007, 11:14 AM
Haven't read all pp ...

Today Show just had a segment on Autism today. Specifically, "diagnosing" or intervening at a younger age (before a year even) which I thought was great. They had the founder of Autism Speaks and a couple other guests.

FYI if anyone wanted to visit the todayshow site to see what info they had. :)

drenotdoctor
10-31-2007, 12:10 AM
Hello ladies,

I didn't see this group until after I posted on the general parenting forum. My GP and the ENT are both concerned that my 20 month old may have autism. We are getting tubes put in Friday to help with his hearing. However, Benji still has some signs
doesn't point at anything
doesn't bring me stuff
is oblvious to all other kids (except his brother some times)
doesn't follow any directions
hasn't caught onto any signs or made up any of his own

About the only thing he did do that they asked was he plays peek-a-boo.

Any advice, things to watch for. I saw the reference for the asperger's book would that be good for me as well, any other suggestions?

some "red flags" would be at

9 months, not babbling
12 months, not pointing to things
18 months, not responding to "look!"
18 months, no imaginary play

LMK if you need more info... Here is some great websites that might help you out:

http://www.autismspeaks.org
http://www.nationalautismassociation.org/index.php
http://www.autism-society.org/site/PageServer

Suzi
10-31-2007, 01:24 PM
Thanks for those sites. I onlyl knew of the autismspeaks one. Benji does babble a tiny bit, and did at 9 months but doesn't do any of the other things. Thanks so much

drenotdoctor
11-02-2007, 01:20 AM
Thanks for those sites. I onlyl knew of the autismspeaks one. Benji does babble a tiny bit, and did at 9 months but doesn't do any of the other things. Thanks so much

:hugs:

SoCalMama
11-17-2007, 02:58 PM
WOW!!! Hi everyone. I wanted to say hello and add a little "About Us".
My son is 27 months now. From the time he was 3 weeks old, I *knew* there was something just not right. He had this intensity that I always felt was just wrong. It just progressed and progressed. Everything else seemed to be on track except his speech. And he had no emotional self-control, it seemed. Along with no self-soothing techniques.

One dr. lead me to another to another to another....none of which were conventional doctors. The pediatrician dismissed me at every turn. I ended up with an appointment at For OC Kids for an evaluation. I was given the diagnosis of autism: "He's low on the spectrum, but not the lowest". I was devastated. I honestly wasn't expecting it. I knew there was something, but I have no idea what I was expecting.

BTW - I was around 32 weeks pg at the time! And I was alone when the dr. told me. It was surreal.

Luckily, we live in a state that has the Regional Center. So we got hooked up with services with the next several weeks. A tutor comes to the house 2 hours M-F and works with him. At first it was difficult to listen to him screaming and protesting, but I knew it was best (and I was also relieved to have someone else having to deal with his screaming for a bit).

I was also inspired by Jenny McCarthy's appearance on Oprah and immediatley started Kage on teh GF/CF diet. It has definintely been a great thing. I also did a homeopathic yeast detox. That was a rough few weeks, but it was really great.

I've gone a step deeper and he is now on the SCD diet. And I see improvements in his speech all the time.

We are preparing to move to Prescott Valley, AZ. Does anyone have any idea where I would pursue services in that state? I can't seem to get the Regional Center to answer any of my questions or help me out.

Suzi
12-05-2007, 01:15 PM
Does anyone know of any sites that talk about autism and the best visitation arrangements? I am in the middle of deciding upon custody arrangements and want to do what would be best for our children.

TIA

Dire Wolf
01-03-2008, 12:54 AM
Does anyone know of any sites that talk about autism and the best visitation arrangements? I am in the middle of deciding upon custody arrangements and want to do what would be best for our children.

TIA

I can tell ya what doesn't work.:winkeye: Split visitation, in fact, I am beginning to believe that any sort of extended (more than 3 days) visits could be bad. Dd is 10, we got our dx AS about 4 years ago and I have never been able to hash out a good visitation arrangement with her dad. She completely regresses after beimg there and it takes awhile to get everything back online.

I just wanted to shine a littel ray of hope at everyone. :goodvibes: My dd was given an AS dx 4 years ago and we had some real hard times after that. The school wouldn't do what I was asking for and they tried to change her dx to all sorts of inaccurate things. She was failing everything, homework was a nightmare and she was never to class on time. She was in a special day class and basically forgotten about by the school. Not even allowed to have lunch with other kids. Then we switched schools, got a one on one aid for the class, and viola!!:yay: She has all B's and everything else is falling into place. She doesn't actively seek out friends, she is content to just talking to other kids. But she is actually happy about school and wants to be there. Things are really looking up for her. So there is hope and it will get better.:bighug:

apmommatnt
01-10-2008, 08:34 PM
UPDATE : Since I last posted, we have the referral (damn HMO's) to see a Developmental Ped, they pushed us through to be seen on the 15th since we decided to go forth with the MRI...Tristan has an appointment on the 18th of this month. I am still feeling both apprehension and anticipation. Since he is showing signs of "possible" absence seizures, concerned with his pituatary, they prompted us to schedule the MRI. I am not sure what we will gain from this procedure, but, I hope whatever it is, it is helpful. Tristan goes back and forth..some days are better than others (as even with an atypical child) so, it is hard to be concrete on a diagnosis. He is not yet 18 months, so, they are waiting to give any type of diagnosis till he progresses, or doesn't. Lets see...here is what he is doing:

PROS

Still a smiling fool - doesn't really laugh, but will reciprocate smiles!
Playing peek a boo (YES!)
Kinda pointing...he points to his tray when he wants more food LOL
Signing "All Done" and saying "Ahh daaa" (when prompted)
Says MAMA- DADA- JUJU (for juice)
Walking (badly - he falls a lot and prefers crawling still) but walking
His pincer grasp has FINALLY started to show, so for now, no more raking food.

CONS

He is MAJORLY sensory seeking (oral input) he sticks EVERYTHING in his mouth
Stimming...where do I start. He sways back and forth ALL the time, especially when watching TV. I try to get through to him sometimes "Tristan, honey, come here bubbub" and it's like he is somewhere else. He arches his back...does or has anyone else kiddos done this? I have tried to research it but nothing comes up. Carts, he arches, head back in carts. Chairs, etc. I think it may be SID...When laying on his back, he will arch up, kick his legs and tilt his head back..he has done this from a very young age. He will play with toys that sing and repeat them over and over and over. He puts things up to his ear and down, up to his ear, and down. He has JUST started visual stimming, staring closely (like touching with his eyes) a toy that lights up. WOW..there is more too.

If everyone can just keep us in their thoughts for his test. He will be under general, so I am a bit nervous about that. Thanks so much. And, chime in, it's nice to know that there are others out there.
~Jenn

Dire Wolf
01-10-2008, 11:52 PM
Hello, my name is Temma, and my 10 yo dd Dori has Asperger's Syndrome. We got our dx when she was almost 7 so you are way earlier in the game than we were. Now the difference with AS vs. ASD is verbal language skills. Dori has always spoken very well. She just doesn't get the whole social thing. So the talking issues that everyone is talking about are foreign to me. However, the pp's comments about toys does sound very familiar to me. In fact, Dori still does this to her little light up keyboard. Dori doesn't arch her back in chairs but I can always tell when her clothing is bothering her, she hand flaps. There are some great group forums out there where there are people that have probably been through or are going through the same steps you are. Go to Yahoo groups and look there, I have signed up with 2 groups there. O.A.S.I.S. is another place that may have more help for you. That stands for Online Asperger's Syndrome Information Site. Sorry I don't have more, but I hth! And my thought s will be with you and your son. :hugs:

LandynsMommy
01-18-2008, 10:30 PM
Wow I didn't know there were so many MAMAs on here with Austic/PDD babies/kids....
Well my son hasn't been diagnossed yet, but he is showing all the severe signs of Autism...I am not sure what all to do, or where to go..Some of the things my son does..
only says 3 words (mama, dada, nana), refuses solids, focues on items on the toys instead of the toy itself (wheels on a car, stings on a toy), refuses to play with other kids, hates being in big places (church, stores), wants to be alone, doesn't like eye contact, doesn't wave, doesn't point, doesn't kiss (pecks or anything), doesn't play peek a boo, puts his blankie (the silkie stuff on the edges) in his mouth and bites down, then uses both hands and yanks/pulls the blanket out of his mouth...
he prefers to be all alone in his room in his crib....i feel awful....i bring him in the living room or even sit in his room and try to play with toys with him, and he wants nothing to do with me...he would prefer to be in his crib watching a movie and/or playing with his toys....

Dire Wolf
01-19-2008, 12:23 AM
1 in 150! I guess we're all #1 here. Good luck with your son, he is young so there are many things you can do to help him out of this withdrawn phase. Welcome to the forum.:hugs:

apmommatnt
01-20-2008, 09:37 PM
Back again...Tristan had his appointment with the Developmental Ped last Tuesday, he was diagnosed with HFA (high functioning autism). We are relieved as now we can finally get him the treatment that will be so important to help him through this. We have been receiving Early Interventing since he was about a year. We have his IFSP with our Service Coordinator on Tuesday, so wish us luck that we can speed up the ST/OT/PT and trying for Music Therapy too. Thanks for listening ladies, this is a wonderful outlet to speak my thoughts. I am not really surprised by the diagnosis, but, it is still hard to accept at times. Today was a good day, lets hope for tomorrow to be the same. Love to all you and your little special ones.

ladylee
01-22-2008, 09:34 AM
My son was dx two years ago. He is very high functioning and some days he doesn't seem autistic at all. When he is in a new social situation and others say hi or try to converse with him and he doesn't respond, I go through a period of loss once again. It just happened yesterday and I was so heartbroken. Just writing this now makes me cry - not for me but for him. He is a good hearted little boy with an amazing sense of humor.

Adamsmama
01-23-2008, 06:54 AM
Just saw this thread! My oldest is PDD-NOS until we get another diagnosis. He has been to 3 neuro., pyschologist, geneticist., allergist, GI dr., among others. It has been a long ride (we've been trying to get a dx since he was 2) but most recently he was dx with PDD-nos. He is delayed in speech, fine motor, gross motor, and cognitive functioning.

sharleen (DCDiapers)
01-24-2008, 07:43 PM
My 4 year old was diagnosed 2 weeks ago with pdd/autism. More of the high functioning kind with a high vocabulary and communication, but socially having dificulties and also oppositional defiant disorder. We are working through lots of different things with him.
Its been a year road to get here and I am not sure where to go from here, but I am glad to see that we now have proper help as well.

Its nice to see a bord where I can ask for help.

any suggestions where to go from here?

Dire Wolf
01-24-2008, 10:25 PM
My 4 year old was diagnosed 2 weeks ago with pdd/autism. More of the high functioning kind with a high vocabulary and communication, but socially having dificulties and also oppositional defiant disorder. We are working through lots of different things with him.
Its been a year road to get here and I am not sure where to go from here, but I am glad to see that we now have proper help as well.

Its nice to see a bord where I can ask for help.

any suggestions where to go from here?

It depends on whether you are planning on putting him through the public education system. I had to advocate for my daught by myself out here bc Cali is wierd about representation and education. Based on the severity of his issues will depend on the use of an aide or putting him into a special classroom with other children that have disorders as well. I can tell you that it is near impossible to change the IEP goals once they have been set, so be careful with that one. I think I have jumped theough every hoop the school system could throw at me before I finally moved out of the area. Dori was failing everything at the last school and now she has higher than average marks at the new school. If you are heading that way, let me know, I will send you all kinds of stuff about this process. Also, look for support groups on Yahoo!. I am in 2 and they really help me out with Dori. These groups usually have adults that have recieved the same dx as Dori so they really offer me some perspective. Good luck! :hugs:

apmommatnt
02-14-2008, 03:03 PM
Out of the blue, Tristan is pointing to pictures now...he has started saying a string of words, and using them appropriately. I am estatic. We have been receiving therapies and I think they are paying off. I get myself all excited and say, "maybe he just has a delay???" Either way, we are happy that he is making progress, we pray for more.

Dire Wolf
02-15-2008, 09:54 AM
:hugs: That is awesome mama!! Those breakthroughs are the best!

apmommatnt
03-04-2008, 09:11 PM
And then we plateau again. If anything, I think autism teaches us to be patient..right? He is regressing a bit, but it hasn't been that long, so, we are just being patient. My favorite book to read to him is "Leo the Late Bloomer"...it is a Scholastic Book, but it TOTALLY speaks volumes as to how I feel about his development. It helps for my daughter to hear it too, she understands and empathizes better with why he is the way he is. I love that little guy.

Dire Wolf
03-09-2008, 12:56 PM
There always seem to be huge setbacks right before a break through with Dori as well. She has been struggling with behavior in class and refusing to do math at home. She got in big trouble last Monday and then turned everything around, even wants to pack her own lunch and is volunteering to do chores now.

It'll get better, it's my mantra these days...

apmommatnt
03-25-2008, 08:23 AM
Hey mamas and daddas! Check this out...it airs tonight at 8PM on HBO

http://www.hbo.com/events/autism/

mama2logan&evan
04-21-2008, 01:33 PM
Hi mamas. We were given an educational diagnosis of ASD for Logan today. We'll be going to the doctor for 2 weeks for those evals. Any advice? Questions to ask? Dh and I are all very new to this condition as we've never known anyone with it.

Nanner99
04-26-2008, 05:32 AM
nak- i hope you mamas don't mind me posting here.

something is not right with my nephew. he turned 2 in feb and just does not act his age.

he can say words but often does not use them to communicate.

he never has shown separation anxiety, even though he spends a lot of time at home with just his parents.

he was late with gross motor skills and still is not very athletic, for lack of a better word.

he understands what you say, though it is sometimes hard to tell- i.e. not much reaction.

really, i have known since he was very young that something is just "off", or at least I have suspected it.


His parents see that he is not doing the things my son is doing (who is 2 mos younger), but I don't think it has occurred that there may be an actual problem.

It is difficult b/c my son is the same age and so I feel strange to say anything, like I am comparing them (well, I know I am, but I totally get that each kid has their own timetable).

Any advice? Should I even try to talk to them about it? I have wondered this for a year now. I don't want to hurt feelings, but I realllllllyyyy want my nephew to havethe advantage of therapy if there is something....

TIA :goodvibes:

maddy
04-26-2008, 05:53 AM
Early intervention is great but parents have to be ready to hear the diagnosis. Hearing that your child has autism is HUGE and it means giving up a lot of your dreams for your child. It doesn't mean that you won't have hopes and dreams but they will be radically altered. We have a brochure in Canada called "Your child might have autism" it has a checklist on the back. I think that you may be able to see a copy of it through Autism Ontario's website but I'm not sure. Good luck with this very delicate situation. And...fabulous definition of success!!!! Got to go put the towels in the dryer!!!

beautiful8
04-26-2008, 08:34 AM
did anyone see this here...

(Jenny McCarthy's son has supposedly been cured)

http://articles.mercola.com/sites/articles/archive/2008/04/24/44858.aspx

Dire Wolf
04-26-2008, 12:29 PM
There is no cure for autism. She says that her son shows no symptoms of autism at this time. I tried this diet with Dori and she got lethargic and was non responsive to conversation and touch, we stopped very quickly. There have been other articles about the decrease in symptoms or them going into dormancy for some kids. Mother Magazine has had articles about the various types of treatment available. One of things I keep hearing stressed is that meds don't work, diet and therapy do.

As for the mama with the nephew that is "different," my step mom tried to say something to me about Dori years prior to the dx. I wasn't ready to hear it, I didn't get mad but I wasn't ready to hear it. Really, all you can do is offer a little information for them and just be there for you family when/if the day comes that they realize things need to be done differently.

One other thing; Dori is high functioning and I am beginning to see that she will have a fairly normal life, maybe just have to carry lists around with her and use headphones in crowded places. But I see that she will be a contributing member of society, she is becoming independent and proud of her accomplishments. So, don't give up on the hopes and dreams of your kids, the will have the lives that we wanted for them.

sharleen (DCDiapers)
06-14-2008, 10:37 PM
There is no cure for autism. She says that her son shows no symptoms of autism at this time. I tried this diet with Dori and she got lethargic and was non responsive to conversation and touch, we stopped very quickly. There have been other articles about the decrease in symptoms or them going into dormancy for some kids. Mother Magazine has had articles about the various types of treatment available. One of things I keep hearing stressed is that meds don't work, diet and therapy do.

As for the mama with the nephew that is "different," my step mom tried to say something to me about Dori years prior to the dx. I wasn't ready to hear it, I didn't get mad but I wasn't ready to hear it. Really, all you can do is offer a little information for them and just be there for you family when/if the day comes that they realize things need to be done differently.

One other thing; Dori is high functioning and I am beginning to see that she will have a fairly normal life, maybe just have to carry lists around with her and use headphones in crowded places. But I see that she will be a contributing member of society, she is becoming independent and proud of her accomplishments. So, don't give up on the hopes and dreams of your kids, the will have the lives that we wanted for them.

NAK
Just wanted to say, great post! Diet has helped my 4 year old quite a bit. There are still set back days, and with diet and intervention, he is coming along well. The biggest struggle we have is ODD. (opositional defiant disorder) But yes, he will definatly be a contributing member of society as well and very smart. (he is also high functioning, and prob does not need lists because he has a photographic memory) he scanns things and remembers slight details for months or in some cases for up to 2 years. Now to channel it lol.

Anyhow, I have not checked in for a very long time as its been busy (with 4 under 4 lol) but we are doing well, and settling into a summer routine of 9 hrs a week of intervention. Sending hope to all you mamas out there.

lovemy3boys
07-09-2008, 12:24 AM
Hey mama's! I'm in need of a little advice.

we (dh, me and ped.) all think that my almost 33mo old might be autistic. Right now we can't get him evaluated due to cucumstances beyond our control. dh is military and he has been gone alot lately and it's been even more difficult around our house because of that. he'll be gone for possibly up to 2 months here in the near future. I need some ways to help me deal with ds and keep myself sane enough to take care of the kids and myself.

a little history: i have thought a few times about autism. i thought maybe it was due to the MMR shot ds got at 12 months, but thinking back there were signs before then. he never took food to his mouth for a long time. he couldn't use a fork or spoon up until the last 3-6 months. he didn't give eye contact at all before 1 year and is not very good at it since, but is getting better in that respect a little. he throws violent tantrums about seemingly trivial things 5-10 times a day. he is very visual and can do things that alot of kids his age can't. he is very repetitive and things have to be just so. .. dh just made me loose my train of thought :giggle: there is alot more but i just can't remember where i was going lol.. my nephew (my half sister's son) was diagnosed with aspergers less than a year ago. they origonaly thought he had OCD and ADHD. my son reminds me alot of my nephew at that age (nephew is now 6) Even if he isn't autistic, i need help with him because he has a way of making any day seem long and aweful. his biggest thing is that he wants me to lay down with him, facing away, so he can touch my hair and doesn't understand that i can't stop everything i'm doing any time he wants so i can lay with him. i have 2 other lo's i have to take care of. he thrives on rutines and all he!! breaks loose if it gets messed up. he is very smart, but didn't start talking AT ALL until he hit his 2nd birthday. he still doesn't speak in sentances at all. most of maybe 3-4 word strings. he can repeat almost anything but has a hard time coming up with things on his own. he also has memorized, in his own language, several movies... and by several i mean close to 20. transformers is one of his favorites.

so basicaly, i just need some suggestions that might help him and me get through the days. I plan to make him a chart with removable pictures so he can SEE what sort of things are happinging that day and in what order. also with times with a clock near it (even though he can't tell time) so he can see, "oh, a plate of food, lunch time, 1pm.. got it!" or "a bed with a moon over it and a sleeping baby, 8pm.." that sort of thing. also thought of flash cards because he just pulls me around all day and moves my face to get my attention and he won't tell me what he wants. maybe flash cards he could pick out the one and SHOW me what it is. i can't stand getting up 100 times just to tell him No he cna't have whatever it is he's wanting this time. also, if there is something (crayons, blocks) he has to have ALL of them. he can't share. i can't have one, he has to have all of them. he has to line them all up and they have to stay that way lol. it's cute but i hate that he can't understand that he can't just have everything all the time. so any help or advice is much needed and apreciated. like telling me what you do with your lo. TIA :goodvibes:

JamieGW
08-18-2008, 01:51 PM
When did you start seeing "the signs" that you were no longer able to explain away?

kat7597
10-19-2008, 07:44 PM
I have to make some time to scroll through and read all the posts here. In the meantime, I thought I'd just briefly introduce myself. I'm mom to an 18 year old ds who was finally dx'd Asperger's Syndrome at the age of 9 after years of me taking him to various medical "professionals" because I knew very early on something just wasn't typical with him. I am also mom to a 7 year old ds who was dx'd "on the spectrum" by a developmental pediatrician at the age of 3. And a 3 year old dd who appears to be typically developing.

I just want to send out a huge hug to all of you who are new to the diagnosis. I know it is so difficult to hear - even when you, in your heart, have known it for some time.

I also want to say there is light at the end of the tunnel. My 18 yo has had a rough road, I won't sugar coat it... we've had our share of severe meltdowns - several to the point of ER visits. We spent years fighting an inadequate public school system that just wasn't equipped to appropriately educate a kid w/ AS. At the age of 18, he struggles with some sensory integration difficulties, panic attacks, and anxiety and still has to work very hard to follow social cues, etc... so life is still a challenge for him. HOWEVER, he is an amazing young man with a bright future. After being homeschooled for 6 years and thriving, he has taken a few college classes at a community college w/ great success. Prior to moving 3 months ago, he had a job for 7 months and his managers raved about his strong work ethic and great manners. He recently signed up to be a volunteer firefighter at the local firestation. He has also participated in several mission trips with our church - cleaning and rebuilding in Mississippi after Katrina, building concrete huts in a "slum" area of Mexico, and Habitat for Humanity in Alaska. He also participated in a fantastic volunteer group at the YMCA for 5 years - YMCA Leader's Club. My point is - please know your kids will have some hurdles to get over and it may always be that way for him/her but their futures aren't bleak. They still have the world within their reach, their path is just a bit different.

I don't want to leave out my 7 year old so I'll update on him too :thumbsup: He didn't really talk at the age of 3. He had intensive speech therapy from 18 months until he was about 6. He also had physical therapy and occupational therapy. He is now doing really well. We haven't been back to the developmental pediatrician in a couple of years but I have a feeling if we saw her for an initial visit today and gave no background info, she might describe him as quirky, lol, but I don't think she'd say spectrum. Either way, it is fine with me. He is a really cool kid. He is great at puzzles, loves learning French & Chinese at school, and is learning how to play chess. He cares deeply about the environment and animals.

My 3 year old dd is a super strong, fiesty girl who won't hesitate to tackle her brother and pull his hair if that is what she needs to do to accomplish her goal, lol!

Kimberly

Wyomin'Momma
10-22-2008, 09:48 PM
Hi mommas! After two long years we got a diagnosis yesterday for my oldest of HFA. It's so good to finally know but very overwhelming at the same time.

Brandy

eileenAKAmommy
11-18-2008, 09:15 AM
My oldest Jonathan, who is 5, was diagnosed with PDD-NOS right after his 3rd birthday, we already knew he as SID, He didn't start talking until after 4 years of age. He has DAILY speech for 4 years, also OT, and PT.

He has come so far, you wouldn't recognize him now if you knew him "back in the day".

cchrissyy
12-04-2008, 12:10 PM
I should say hi too -
my oldest turns 6 this month and has had his autism diagnosis 2 for years now. From age 2-4 he got speech and OT through early intervention but we couldn't get a competent, thorough assessment. Since diagnosis, we've done so much with medicines and supplements and lots of services, and we're in a good, stable place right now.

He has a home program with 1:1 Floortime therapists, private OT and social skills group. He needs psychiatric medicine to function in daily life (severe self-injurious behaviors and dangerous to others on a daily basis without it).

At school he has a mainstream classroom, no aide, and pull-out speech, OT and social skills group. We feel very lucky to have the school we do, a small public school with a fantastic inclusion specialist watching over him. He also does well at afterschool care in the community center next door.

so, hi!

Froggiedance
12-06-2008, 08:43 AM
When I worked at Head Start and was taking histories on children with autism and aspergers, I often noted that the children were developing normally until they received the shot they get at about 12 months (it is for about 4 diseases). After the shot they lost all language and then they were diagnosed with Autism. My hypothesis is that the heavy metals in the vaccine gummed up the brain past the Amygdala. The solution for this is chelation therapy. EDTA is FDA approved for children, but you may need to find a doctor that will actually support the chelation. Isn't it worth a try? If found an interesting website while I was googling around:generationrescue.org

mamamandi
12-09-2008, 12:39 PM
Hi mamas,
I don't know if this is appropriate, but when did YOU know. I'm sure you got a formal diagnois for doctor's etc., but did you have that mama feeling that something wasn't quite right before hand? How old were babes and what "signs" did you see??? Hope I am not out of line, thanks mamas.

LambyPants
12-17-2008, 01:55 PM
Hi mamas,
I just noticed this sticky.:giggle:

My son, Apollo, is 2 1/2. He has not "OFFICIALLY" been diagnosed with autism yet, but he has been unofficially through our ISD. He is delayed in almost every aspect, in many areas he tests at about a 1 to 1 1/2 year level. He also has proprioceptive and vestibular sensory issues. He is currently receiving OT, ST, and play therapy.

The hardest part I have found in raising a child with autism is being able to trust others to care for him. While he is the sweetest little boy ever (although I could be biased in that statement), he does have behavior problems and his inability to communicate exacerbates the problem immensely. Others have a hard time dealing with him, and become frustrated to the point that it affects him. So we rarely get time to ourselves as parents generally need. So, yeah it's tough. But when it comes down to it, I love my boober, more than anything, just as he is and wouldn't trade him for all the gold in the world!!

angbaby1
12-26-2008, 02:07 PM
I forgot to ask - have any of you heard of a natural product called Natural Cellular Defense? It's supposed to work wonders for all kinds of things - especially autism. By helping your body throw off heavy metals, toxins and poisons without being hard on your body in the process...I was thinking of getting it for Emma and Elayna. I've spoken with a mom whose little boy is autistic and she says it's worked wonders for him. Anyone else have stories?

Did you know you can do a hair analysis to determine what an individual may be toxic in? (vit and minerals) just thought I'd put it out there :) :hugs:

EarthMum
12-26-2008, 04:32 PM
My son is 2 and we just started him on a gluten/milk free diet about 3 weeks ago. It is going great, but I am running out of thoughts for different foods....and money trying to do this. My son is a picky eater and I feel very limited on ideas.
His favorite is pasta. He likes bananas and some other fruits but is not a veggie fan. He does not like the feeling of mashed potatoes or anything else like it. I am hoping to find some gluten/milk free bread and crackers at the health food store next run, but I am afraid it might cost an arm and a leg.

Do any of you mamas have any other food ideas for me? I am new at this and would love any other ideas! Thanks a ton! :goodvibes:

jac1976
01-05-2009, 02:55 PM
Hello! My name is Jessica and my son, Alexander, is 3 1/2. He was officially diagnosed with PDD-NOS a few months ago by a team at the nearby children's hospital. His main deficits are in social communication and sensory integration. He receives ST 2x a week, OT 2x a week, and social skills classes 2x a week, plus pre-school 3 days a week, and a daily home OT program.

Hi mamas,
I don't know if this is appropriate, but when did YOU know. I'm sure you got a formal diagnois for doctor's etc., but did you have that mama feeling that something wasn't quite right before hand? How old were babes and what "signs" did you see??? Hope I am not out of line, thanks mamas.

I probably started thinking something was really wrong when he was 2. He had already been evaluated by early intervention and been receiving speech help. But at 2 he wasn't speaking, wasn't interacting with people, wouldn't listen or respond to others when they were talking. The physical signs were that he would continually bang his head against the wall (so hard that he would get bruises), he was constantly putting things in his mouth (he even bit into a glass christmas ornament on purpose), he would "peer" at things (hold them up to his eye really close and stare at them out of the corner of his eye), and flap his hands/arms.

While I didn't think anything was wrong until he was 2, now that I know better, there were signs much earlier. My daughter is now 13 months old. She looks people in the eye, babbles with them, has 4 words, waves hi and bye to everyone she sees, etc. My son did none of that, but b/c he was my first, I didn't really think it was an issue.

aspensattic
03-19-2009, 10:35 AM
I wish guys all luck with getting a diagnosis. I don't know why they wait. My youngest was diagnosed at just short of 2 years old, but he'd had symptoms before that. Frankly, I knew something was up but I didn't think it was autism. Both boys had been in therapies for speech and ot and pt for about 6 months or more at that point.
Christine, I so feel your pain. I wouldn't dare put down here what I've been through with their schools, lol. Fortunately, the public school system here (in midcoast Maine) has been so wonderful so far. They are building a program for kids with autism (and other issues) and they have researched so much just this year to help my oldest son... which is a major reason why I credit him with all the advances he's made. Our speech therapist is looking into a dynavox for the youngest... not to talk for him, but to help him talk, he's barely verbal spontaneously, and it's pretty limited on request. But he's a great kid and you'd love him if you met him. :o)

kennilove
03-27-2009, 02:06 PM
hey, there was a post on the old ds for parents with autistic children. i just wanted to say hey. i went to the neurologist today and we have now been given a formal diagnosis of high functioning autism. im still trying to take it all in, even though i knew that it was probably so, i still felt in shock about it, and sad as well. i just wanted to talk.

heather marie

Hi, I just wanted to say I know what you are going through. My 7 year old stepson is autistic. we don't have a medical diagnosis though, but he was diagnosed by at home program (i can't remember the name, i'll have to ask my hubby and he's not home) and placed in an early childhood program when he was 3. I'll have to ask my hubby more about it, because i just came into the picture a couple years ago (we've been married 2 years), but the school has really helped him a lot. He has an IEP program, and he has made a lot of progress since I first met him. I believe when i met him, he wasn't talking at all. But my DH and I have worked very hard with him and he has done so well. I think the earlier you are able to get them diagnosed and able to get them intervention, the better! I hope i was able to help. I just wanted you to know that it will be okay. I've learned so much from my stepson! he's such a sweet little boy! :) I'm so glad that i have him in my life, and that i get to be his stepmom! :) but it is nice to meet other moms who have autistic children also. :)

Kendra

eragsdale
04-29-2009, 01:27 PM
sorry-wrong area

3Monkies
05-12-2009, 03:59 AM
hi Mama,
Auti mama here also. My LO is almost 7 and was diagnosed at 24 months. He was talking and regressed to no words. We report today that he is saying approximations of words and is very vocal. He also has bgun to write. The diagnosis is hard. Although defeating as it may feel there is so much available resources out there. As you know Early Intervention is key. Keep drivin' on.
Your hands will be full somedays, but your heart will always be fuller.


Jean

3Monkies
05-12-2009, 04:02 AM
Mama,
Saw your post and hope your labs came back well. Which DAN are you seeing? We have a local DAN and are on chelation #8 and we do the SCD diet and supplements as well. I hope you got some great labs and your teeters look great. If ya ever wanna chat.

JH

3Monkies
05-12-2009, 04:05 AM
We do the regular SLP, OT, ABA,VB,Then chelate, supplement with cal/mag liquid, zinc,do fish oil, SCD diet, and use melatonin at night. By far diet and chelation have helped immensly. But prayer works the best;)
JH

eragsdale
05-12-2009, 08:09 AM
Mama,
Saw your post and hope your labs came back well. Which DAN are you seeing? We have a local DAN and are on chelation #8 and we do the SCD diet and supplements as well. I hope you got some great labs and your teeters look great. If ya ever wanna chat.

JH

i think you are talking about me; his first appt isn't until the end of May; but after going on the doc web-site here in Grapevine, Texas-it sounds so much like Daniel. They only take certain cases so; it was a blessing that we got the "green light".:goodvibes:
I truly believe that this is the answer; but it will be hard finacially, becuase they don't do insurance.:cry:

greytmommy
06-23-2009, 05:32 PM
I wanted to introduce myself.
My almost 5yo DD was diagnosised w/ Asperger's in April.

We have started some sensory intergration therapy, but this has been hard. Seems my DD has anxiety issues...so she seems fine in therapy, but then vomits when we leave.

She has issues w/ transitions, food issues (big time over temp...wants all her food frozen or cold), issues w/ hair being brushed, doesnt like loud noises, ect. Her obession is Disney Princesses and "pretty dresses". She walks on her tiptoes, and circles her hands when she is anxious. doesnt play w/ the other kids in pre-k, and has "pragmatic language issues" and therefore has a hard time communicating her needs and wants. She also has a lot of issues w/ her self help skills.

I just wanted to say hi, and mention that I have NO idea what I am doing!!!

Oh, and interesting tidbit.....my older brother has prob HFA and is undiagnosised (but obvious to anyone familiar w/ it)

iris0110
06-23-2009, 08:39 PM
i think you are talking about me; his first appt isn't until the end of May; but after going on the doc web-site here in Grapevine, Texas-it sounds so much like Daniel. They only take certain cases so; it was a blessing that we got the "green light".:goodvibes:
I truly believe that this is the answer; but it will be hard finacially, becuase they don't do insurance.:cry:

Hi there. I hope the appt went well. DAN! can be really expensive, but for us it has definately been worth it. We use a DAN! dr in Southlake Tx, close to you. We have been incredibly happy with him. He isn't on any insurance specifically, but some insurances will cover him as out of network. Ours unfortunately is not one of them. But I have been so so happy with the progress Kearnan has made. He was very delayed when we started, now he is on target for speech, he eats normally (after the DAN! and years of feeding therapy) and his OT recently told me she thinks he will be ready to graduate OT by the end of summer. I really can't believe the progress he has made. I don't know if you have looked into it, but Kearnan qualified for SSI and that has really helped cover all of his treatment that insurance wouldn't.

eragsdale
06-23-2009, 08:49 PM
Hi there. I hope the appt went well. DAN! can be really expensive, but for us it has definately been worth it. We use a DAN! dr in Southlake Tx, close to you. We have been incredibly happy with him. He isn't on any insurance specifically, but some insurances will cover him as out of network. Ours unfortunately is not one of them. But I have been so so happy with the progress Kearnan has made. He was very delayed when we started, now he is on target for speech, he eats normally (after the DAN! and years of feeding therapy) and his OT recently told me she thinks he will be ready to graduate OT by the end of summer. I really can't believe the progress he has made. I don't know if you have looked into it, but Kearnan qualified for SSI and that has really helped cover all of his treatment that insurance wouldn't.

there is a doc in Grapevine; but we just don't have the money right now.:cry:
We have and ECI evalutation on the 1st of July. I have talked with moms and have done a LOT of research; and he has more symptoms of Asperger than Autism. I broached it with the ECI nurse and she said the youngest they've been able to diagnosed is 3, but she said that with just me telling her what he is/isn't doing; she agrees with me.

what is SSI?

iris0110
06-25-2009, 06:12 PM
there is a doc in Grapevine; but we just don't have the money right now.:cry:
We have and ECI evalutation on the 1st of July. I have talked with moms and have done a LOT of research; and he has more symptoms of Asperger than Autism. I broached it with the ECI nurse and she said the youngest they've been able to diagnosed is 3, but she said that with just me telling her what he is/isn't doing; she agrees with me.

what is SSI?

Supplemental Income for people with disabilities from social security. Kearnan qualifies because we meet the income criteria and he is disabled. But you have to have a diagnosis first. Because of the SSI he also gets medicaid which helps cover the therapy he needs. And the SSI money covered the DAN! Dr, testing and treatment. We couldn't have afforded the DAN! without it.

I did want to warn you to be careful when choosing a DAN! DR. Most are really good, but there are some that are not. There is no special licensing board that limits who can call themselves a DAN!, and some of the treatments are dangerous if not administered by a qualified physician, and if appropriate testing isn't done first. But I'm sure you probably already know that. We called quite a few in the area before choosing one. Several were really odd and made me feel really uncomfortable.

eragsdale
06-29-2009, 04:32 PM
Supplemental Income for people with disabilities from social security. Kearnan qualifies because we meet the income criteria and he is disabled. But you have to have a diagnosis first. Because of the SSI he also gets medicaid which helps cover the therapy he needs. And the SSI money covered the DAN! Dr, testing and treatment. We couldn't have afforded the DAN! without it.

I did want to warn you to be careful when choosing a DAN! DR. Most are really good, but there are some that are not. There is no special licensing board that limits who can call themselves a DAN!, and some of the treatments are dangerous if not administered by a qualified physician, and if appropriate testing isn't done first. But I'm sure you probably already know that. We called quite a few in the area before choosing one. Several were really odd and made me feel really uncomfortable.

your son sounds like mine (looked on another thread); who sent you to the feeding counselor? Ds#1 will only eat a handful of things and then somedays won't even eat:cry:. The Nutri. at Children's said that since his weight is within in the charts (pedi said this was because of height) that to just let HIM tell us when he is hungry.:banghead: Also his GI doc said that the vomiting may just be a way of life for him.:headscratch: ( i didn't like/agree either of these comments)

iris0110
06-30-2009, 06:27 PM
your son sounds like mine (looked on another thread); who sent you to the feeding counselor? Ds#1 will only eat a handful of things and then somedays won't even eat:cry:. The Nutri. at Children's said that since his weight is within in the charts (pedi said this was because of height) that to just let HIM tell us when he is hungry.:banghead: Also his GI doc said that the vomiting may just be a way of life for him.:headscratch: ( i didn't like/agree either of these comments)

I told my normal pedi that I wanted him referred for feeding therapy because he wouldn't eat. I am very lucky with my pedi, he was my dr as a kid and he is very easy going. Now i don't know if he just really agrees with me or if he knows me well enough by now to know not to argue with me once I make up my mind, but when I ask to be referred somewhere he just does it. Now it is true Kearnan has always been tiny. At this point he is also seeing a pedi endo to try and decipher why he hasn't grown in two years, and he has been off the charts since he was about 9months old or so. We were told several times that if we just refused to feed him what he wanted he would eventually eat what we told him to (especially while trying the GFCF diets) but while that may be true of alot of kids, it isn't true at all for Kearnan. He would just starve himself if you didn't give in. He never really cared much for food anyway. His DAN! Dr refered us to the pedi gastro who did his GI testing. But he had lived in so much pain for so long that it had become habit not to eat anything. And it was also a sensory thing. So it was really a combination of the feeding therapy as well as the other treatments that have gotten him where he is now. He is still picky, but he eats so much better.

No child should have to live with vomitting, and only eating a selective number of foods is not healthy, even if he is maintaining a weight. We need a varied diet to grow healthy. I would continue to put pressure on them about his feeding issues, tell them you want a feeding evaluation done. Can you change GI dr's? Maybe look for one who specializes in autistic children? I was not particularly thrilled with Children's medical center when Kearnan went there. The pediatric neuro was good enough, but so many of the other Dr's were not helpful at all. Kearnan uses Baylor for therapy and I have been really happy with them, their billing department is a real pain, but the therapists are the best. Kearnan's gastro was in Ft Worth, but I can't remember her name. I can't remember if she was a Cooks Dr or not, I know she didn't practice in the children's hospital though.

eragsdale
06-30-2009, 06:49 PM
I wanted to introduce myself.
My almost 5yo DD was diagnosised w/ Asperger's in April.

We have started some sensory intergration therapy, but this has been hard. Seems my DD has anxiety issues...so she seems fine in therapy, but then vomits when we leave.

She has issues w/ transitions, food issues (big time over temp...wants all her food frozen or cold), issues w/ hair being brushed, doesnt like loud noises, ect. Her obession is Disney Princesses and "pretty dresses". She walks on her tiptoes, and circles her hands when she is anxious. doesnt play w/ the other kids in pre-k, and has "pragmatic language issues" and therefore has a hard time communicating her needs and wants. She also has a lot of issues w/ her self help skills.

I just wanted to say hi, and mention that I have NO idea what I am doing!!!

Oh, and interesting tidbit.....my older brother has prob HFA and is undiagnosised (but obvious to anyone familiar w/ it)

HI!

okay the tiptoes: does she do this all the time?
playing with kids her age: is she more apt to play/hang with much older kids?

eragsdale
07-08-2009, 09:20 AM
So after a 5 hour session yesterday; Daniel has hypo sensory disorder!!! :thud:
We still have his GI/intolerance issues (which they think might have also to do with his sensory issue) Also we are now on the GFCF diet, and also avoiding Perservatives and dyes. We have a preliminary diagnose of PDD-NOS(?)

iris0110
07-09-2009, 06:13 PM
So after a 5 hour session yesterday; Daniel has hypo sensory disorder!!! :thud:
We still have his GI/intolerance issues (which they think might have also to do with his sensory issue) Also we are now on the GFCF diet, and also avoiding Perservatives and dyes. We have a preliminary diagnose of PDD-NOS(?)

Kearnan's original diagnosis was also low functioning PDD-NOS, speech delay and Sensory integration dysfunction. He has since lost the speech delay and moved up to high functioning PDD/aspie.

eragsdale
07-09-2009, 11:12 PM
Kearnan's original diagnosis was also low functioning PDD-NOS, speech delay and Sensory integration dysfunction. He has since lost the speech delay and moved up to high functioning PDD/aspie.

Dh wants to re-think the speech therapy (he is supposed to starting this in Aug) and see it doesn't resolve itself through OT and diet. If your son goes to OT; do you mind me asking who he goes to? My insurance doesn't cover it so we will be paying out of network price. :thud::banghead:

iris0110
07-10-2009, 08:47 PM
Dh wants to re-think the speech therapy (he is supposed to starting this in Aug) and see it doesn't resolve itself through OT and diet. If your son goes to OT; do you mind me asking who he goes to? My insurance doesn't cover it so we will be paying out of network price. :thud::banghead:

I never saw any benefit from speech therapy. When he was little and ECI came to the house the therapist taught us to sign with him and that really helped, but anything after that has done nothing. The DAN! Dr really made the diffrence. Though he did see the speech therapist for feeding therapy for a couple of years, he just recently graduated. Right now he is having a tiny bit of pronunciation trouble, and speech therapy does do a little for that, but not much. Over all I was pretty unimpressed with speech therapy in general.

Sure thing, we use Our Children's House of Baylor therapy clinic. I love the therapists, they are really great. We use the one in Coppell, but there are several others as well. I believe there is one in Grapevine too.

AmarrasMom
07-20-2009, 08:58 PM
**Hugs** I hope things start looking up! Your family will be in my prayers!

Texasmom
09-15-2009, 09:32 AM
I have one daughter with Aspergers and one with autism she is non verbal.

eragsdale
09-15-2009, 12:02 PM
Daniel was diagnosed with SPD (hypo, seeking, and vestibular ?) He has an OT that we got to in Mansfield, that we LOVE! Now this is his second from this particular clinic; as the 1st was too brass with him.:yuck:

He is still going to Speech Therapy once a month; for some of the tactile stuff.

OT said he does have autistic tendousies, but they only appear when he gets overstimulated or anxious; so :goodvibes:.

Daniel does do the ADHD/AUTISTIC diet for the most part; as we were told and have personal experience in seeing the behavior change.

He is Gluten Free-Lactose Free (instead of Casein Free), no preservatives or dyes, and only natural sugars (raw honey-but not the comb).

Mom24littleimps
09-24-2009, 05:34 PM
Hi, I am a new member. I have 4 children. My 3 sons, ages 22, almost 19 and 16, all have Aspergers, and two of them also are ADHD. It has been a long journey and will continue to be. I must say it is a lot easier to deal with now than when they were young. I don't know if that is just time and learning to understand them more, and having their services, IEP's etc. all in place, or if they are actually less of a challenge. I really think it is both. I understand Aspergers much more now, and them being older is easier. Young children act out more, understand less, an have their own challenges. I am very involved in all my sons lives and I am the ones that fills out all of the paperwork, looks for new services if needed, attends all the meetings etc. I am recently divorced (June of this year) so we are all adjusting to me being split from my ex, moving, living in town instead of the woods etc. My youngest child is a 6 yr. old girl, so there is a 10 yr. age difference between her and my youngest son.

MyJoshuaTree
10-26-2009, 01:32 PM
What kind of services are available throughout the country? I know in NY we have a lot available to us. However, my husband is interviewing around the country, currently, and I want to know what states to consider!

jac1976
10-26-2009, 01:38 PM
In PA it is now mandatory for insurance to cover services for autism up to a certain dollar amount ($30K per year, I think.) A child on the spectrum (or with any other disability) will also qualify for medical assistance through the state, no matter what the family income. The MA acts as a secondary insurance and will cover co-pays and things your primary doesn't.

momofairforcebrats
11-22-2009, 05:53 AM
I'm the mother of three boys. Due with baby 4 in may. My oldest is 10 and has moderate autism (not high functioing but definetly not low) my nearly 8 year old is very low functioning and nonverbal. My 6 year old is typical, he's a brat but no delays. Some days are crazy. Both autistic boys have had intensive therapy since age 18 months. 3 hours a week each of pt,ot, and speeh until school age then 2 hours each of ot and speech after school and 2 hours speech one hour ot during school along with behavior modification therApy twice a week. My youngest takes thrapy but it's for its for kids with siblings with disabilities kinda a support group. Gets crazy here. I run a business from home, keep up with therapies, volunteer at every school function and next year I gotta add tending a baby and breastfeeding, and cloth diaper care all to the daily tasks again. Man I hope I can keep up. Plus my husband wants to go college for his masters now, I am barely hanging onto my sanity right now (suffering from hypermesis. Nice to find some others who understand. Whole house is gfcf, too hard to keep boys outta things so we just put everyone on it. They are calmer. Haven't seen major improvements cognatively but less issues at school with them being loud or hyper.

julesbulia
01-05-2010, 08:45 PM
:hugs:

3Monkies
01-06-2010, 08:00 AM
Our middle son has Autism, he is generally non-verbal but is beginning to say words. Through chelation he has begun to improve.
It is a challenge to raise a child with special needs, but I try to focus on giving our 3 monkies the most typical life experiences I can.
HANG in there mamas, you are all Warriors!:)

SMTFamily06
02-07-2010, 07:56 PM
How grateful I am to those mamas who took time to write their stories. Our ds1 was dx back Nov 09 but we knew when he was born something was just different. He was diagnosed "ASD", Sensory Ing, global delay, failure to thrive, gross and fine motor delays, apraxia, developmental coordation , the list goes on and on. I am angry at the world it feel like. He just got approved SSI a few months ago but were paying off debt we occured when he didnt have help going to the doc five times a week with him before he was diagnosed as he also has other health problems. I am hoping we can get to a DAN doctor soon but mean time I am reading alot of books switching to GFSFCF and preparing him to go to a dan doc by reading a dan protocol book! How is everyone doing who posted in 06 07 and 08? Updates on the DAN Treatments? Cureently he receives OT 2X Speech 2X weekly. He was suppose to start SSRI drugs for hurting his self and others but I couldn't do it that is why we are hoping the die change helps!

Hugs to all you mamas! It feels SO good to know I am not alone!!

3Monkies
02-12-2010, 02:20 PM
HI ,
welcome to the club, the journey is long,rewarding, and even better as you meet other mama's in this club. My child was diagnose with Autism at age 2,he is now 7.5.
Remember to set your expectations high,and your self-control to moderate and you'll be fine. The road has been long,but fruitfull. God is good. These babies do grow,do develop, and do get better. It just takes time,be patient:) The therapies,treatments,diets, supplements, and opportunities are endless but again, SOO WORTH IT! Hugs to you, and your family.

3Monkies
02-12-2010, 02:25 PM
have u tried the SCD Specific Carbohydrate diet, it seemed really helpfull for us. The GFCF still had alot of processed foods and alternative sugars that can cause probs.
SCD is very meat,fruit,veg not alot of junk. Seemed to go further when GFCF did not calm him down. Also GSE grapefruit seed extract helps with the yeasties.

(and we order pizza when he's asleep and lock the fridge with a bike lock at night)

mams mom
02-12-2010, 11:37 PM
f you dont mind my asking, what are the begining signs of aspergers? I've heard a bit about it but wondering what it is.

I just wanted to stop in and say hi. It is a nice place to talk about our children. I have a daughter that was diagnost 2 years ago with aspergers. I excepted it about 1 year ago. I have seen the signs since birth now that I look back on it, since she was a first child for me I thought all babys were like her. If I had my second first I and Megan second I would have seen the signs right away oh well. Right now I am trying to let Megan be who she is and learn to accept her for who she is. For me that is hard, I had dreams of swimming lessons and ballet she has a hard time with both. LOL she doe go to daisys at the AGS church so that is fun for her. Any ways I am glad I found this group.

Rachel

SMTFamily06
02-15-2010, 06:39 PM
Thanks Mama!! No we are just sliding into a GFCFSF diet to see how it works out! I needed someone to say that .. that they get older and it gets better. I needed to be reminded tonight thanks ;) :)

mams mom
02-15-2010, 08:06 PM
To have the hair test done, who do you request it from? the kids' ped? or some specialist? When ds got a set of shots at 9 months is when he started acting like this. I mean he was laready a difficult baby since 6 months( which is when he got a set of shots also) he was sick for a little while so thats why he had them at 6 and 9 months to get him caught up. I had requested that we do 1 shot at a time and our local health dept. just had an attitude with me and told me that isn't necessary. Well, after that he woudl scream all the time, wouldnt stay in his bed for anything, as a matter a fact, he broke his crib before his 1st birthday from shaking it so hard. From then on he was always getting out of his bed. Then cam ethe sleepless nights, he wanted to be awake and scream and cry, almost like he was having night terrors, but he was already over 1. He go to the ppoint that he quit taking naps thru out the days but still wake up at night and 1 night I woke up to him playing outside in pitch black night. He is 3 1/2 and still acts up so much. He runs from me all the time, in public, at school seven here at home when things are calm. It wouldn't be such a challenge for me but having an 18 month old girl and to ther boys, almost 7 and 5 years. I started a thread the other day and I got a lot of info from other mamas on here.
I'm happy that you guys got some results and now you have some common ground to start on.


Ok, back to report the findings of the hair test!

Just as I had suspected with Tiffany, high levels of Mercury! She also has abnormally high levels of aluminum so we are going to Home Depot today for a water filter as the most aluminum comes through drinking water but also is in some baking soda's and deodorants.

She has an extremely, (off the charts in fact!) level of Manganese which can cause depression, manic episodes, anxiety, forgetfulness and such.

She starts chelation (heavy metal detox) in 3-4 weeks after we get her low levels of essential minerals up as the detox can strip the body of these as well as the toxic metals.

Claire is not as high in mercury, which makes sense as she was born AFTER 1998 when mercury was banned, so she won't have to go through chelation but she has some abnormally low levels of cobalt and selenium and also zinc. The first two can greatly affect your mood and she has a HUGE disorder with her emotions so I am hoping that will balance that out for her! It's also coincides with others within the autisim spectrum to have abnormally low levels of cobalt. These people, along with those who are experiencing dementia or altzimers's (sp?) have high levels of aluminum and she is also experiencing that too. :(

So, we are busy working on leveling out their abnormally high and low levels of these metals and essential minerals. They are having a blood test today to get a more comprehensive look at their B vitamin deficiency and other issues that may be hidden that a hair test cannot detect.

I am excited to get such results as this can mean the correction of the autisim spectrum for both girls!

AngelMommy
04-30-2010, 01:01 PM
Adding myself to the list...

I have two boys - my five and a half year old has Aspergers along with ADHD, SPD, and a Mood Disorder. He will be entering kindergarten in the fall and though in pre-k at the school district receives no services. We manage the best we can through a gluten-free, dye free diet (those two removed much of his agression and violent behavior), medications, a sensory diet at home, and OT twice a month at Easter Seals.

My 2 1/2 year old was diagnosed when he was 1 1/2 with OCD, communical disorder (phonological), SPD, and traits of atypical autism. In February, he was diagnosed with PDD-NOS with the condition that if his social skills didn't improve by August, it would be changed to Autism. The doctor said that he believed the other diagnoses were still correct. Since then we took away gluten and this helped with some of his meltdowns and his eye-contact, and his speech exploded (he went from hardly saying a word or two and only when necessary) to trying to speak and saying sentences. He's still extremely difficult to understand, but he does speak now. Since communication was not an indicator for him, I don't think this will change his diagnosis. HIs speech is still very choppy and forced most of the time, but it is there. He currently receives an hour each of music and speech therapy each week, 4 hours a week of developmental group therapy, and one hour a month of OT (his OT feels that there is nothing she can do with him, that I all ready know what I am doing.) He has his evaluation with the school district a week from today and I'm terribly afraid that they will say he is not in need of any services and that we will go from having so much help to nothing. But it's not in my hands now.

Oh, and add to the fun - my boys are opposites in their needs. :) So getting one to understand the other is beyond challenging! lol I feel like I'm a referree!

Anyhow, glad to be joining a group with btdt experience!

lullaby80
05-31-2010, 08:03 AM
.

mom2manypink
07-30-2010, 03:25 PM
i am also joining my dd was diag with Sensory Integration Disorder and also more but to long to list lol dont have much time. i am having a VERY hard time with this and not knowing how to calm her!
Does anyone have the following books they want to sell?
-The Everything Parent's Guide To Sensory Integration Disorder: Get the Right Diagnosis, Understand Treatments, And Advocate for Your Child (Everything: Parenting and Family)
-the out of sync child
-the out of sync child has fun

MamaStick
08-05-2010, 09:58 PM
i am also joining my dd was diag with Sensory Integration Disorder and also more but to long to list lol dont have much time. i am having a VERY hard time with this and not knowing how to calm her!
Does anyone have the following books they want to sell?
-The Everything Parent's Guide To Sensory Integration Disorder: Get the Right Diagnosis, Understand Treatments, And Advocate for Your Child (Everything: Parenting and Family)
-the out of sync child
-the out of sync child has fun

I wish I had known about you needing these books a long time ago! I gave away my copies, because honestly, after you get used to how your child functions, you come up with lots of your own ideas.

My post might be long...

My second child has autism. She is now 8, but like lullaby, I knew something was 'off' since she was born. Even at almost 2 her then ped said she was "too friendly to be autistic". HA! Many parents hear that song and dance...all because some doctors aren't aware of just how broad the spectrum is. I pushed for Early Intervention and every possible service out there. It was worth it, because even though Ambi did not speak until she was 3, almost 4 years old--she learned sign language ad later used a lot of what she learned in speech to teach her baby sister to sign!

Up until her entrance into public school, Ambi was classified as first having sensory integration dysfunction, then PPD-NOS. I kept pushing for further testing, much to the dismay of both her father AND the school system. When her ped retired, we found a wonderful new office--the new ped noticed right away that Ambi exhibited signs of autism and also, possibly Fragile-X. We haven't had the genetic testing yet, but will very soon.

Many parents are saddened by the diagnosis, we weren't because once we knew what we were dealing with for sure, we could form a plan of attack, you could say. I'd already accepted that it was autism long before the actual 'label' was placed on her. BUT- with that label, you have access to far more weapons for your arsenal.

For example- the GFCF diet. We discovered that by accident. Ambi had always had tummy problems. Literally from birth. I breastfed, but we had to stop because she had severe latching issues. I lost my supply and we went through so many different formulas. During her 3-4th year she had a very bad bout of diarrhea. It would not go away and we were very concerned for her. Her ped told us to cut out dairy ASAP...the tummy problem stopped AND that very week she went from no speech to 5 word sentences. She also said 'Mama' for the first time!

Also, for those of you just learning about the diagnosis- don't be broken hearted. You may not experience the same milestones that other parents do...but you will celebrate far more often. Life with autism is challenging (to say the least), but it is very rewarding. Every stride your child makes is a celebration. Your child also will more than likely never, ever look at the world with the same jaded eyes as others. I know this for a fact...my daughter feels hurt when someone says something mean to her--but that someone ALWAYS has a second chance with her. She just doesn't see the bad in things or people. She is open and loving, without exception.

This way of life often continues into adulthood. I know this because I have the honor of being friends with the creator and owner of Cozy Calm blankets. I am sure some of you are familiar with weighted blankets as a therapy tool for children with many sensory issues from ADHD to Autism. Eileen Parker has autism and created the blankets to the exacting sensory needs of anyone with the need for sensory input.

Eileen came into my life at a time when the autism way of life had began to wear even on my optimistic outlook on the disorder. She needed a writer and even though I didn't know it, I needed Eileen. She related her life with autism to me in the open, earnest way that only someone with autism can. Eileen didn't realize how distant she had seemed as a child to her mother or sister--but she remembered EVERYTHING her mother did for her. Eileen is open to everyone and one incident she related to me reminds me of just how pure someone with autism is...Eileen was out shopping and a stranger walked by her car...the woman smiled at Eileen. When she ran into the woman in the store, Eileen told her how beautiful the woman was when she smiled. It made the other woman's day--because how often do you have a stranger tell you in full honesty that you are beautiful? No ulterior motive, just relating how you made them feel by smiling?

That is autism. The meltdowns, the extensive potty training, the long nights of wondering if he or she will ever go to sleep...is made worth it. Maybe in the case of a child on the low-functioning end of the spectrum...maybe life will not be as open. But there is hope. You are appreciated for everything you do and you are recognized and remembered.

Before I forget (in this long, rambling post)...I'd like to share a site I love for low cost ways to use the GFCF diet. I can't post links yet, but the site is called Frugal Abundance and is owned by 'Miss Maggie'. There are GFCF shopping lists for people on a budget and recipes to make many, many low cost GFCF foods, flours, and more.

mom2manypink
08-07-2010, 08:05 AM
Mama thanks so much for that! I have been having a real hard time with her the past week. I have to try something!

MamaStick
08-07-2010, 07:49 PM
Mama thanks so much for that! I have been having a real hard time with her the past week. I have to try something!

You are very welcome. ANY time you have questions or just need to vent, send me a PM or ask in here. Just remember that what works for me might not work for you :-)

EmMoMa
09-22-2010, 09:06 AM
Hi everyone!!! My son just turned 4 and has autism. He is still nonverbal but I haven't given up hope. He is such a good little boy. So sweet and affectionate. He has this smile and giggle that makes me melt. I have been so blessed that he doesn't have a lot of the behavioral problems that sometimes goes hand in hand with autism. He has his sensory issues but his main trouble is just language. His receptive skills are getting so much better. It's his expressive that is severely lacking. We have been working on potty training for a year now. He goes but will not say when or if he has to go so i am still in the pattern of taking him every hr to 2 hrs. It's getting old. We have tried the naked way undies pullups and we are still in the same place. I hope he catches on soon. So if anyone has any pointers, I'm all ears, er eyes, lol. He is on the gf/cf diet (working on soy free) since July 1st, and his tummy troubles have subsided. Yay!!! He was spitting up and throwing up so many times a day I couldn't count. I have been trying to follow it as well, it's not easy but I feel better myself. I am going to go check out that website pp mentioned. I need some new recipes. I cook gf/cf dinner for the whole family not just my son. I am not making 2 different dinners, lol. It's difficult raising an asd child especially when you have a "normal" older and younger child at home to constantly remind you that he's different. But for right now he is happy and I am working everyday to find more ways to help my special guy come out of this fog.

mommomoftwins
09-25-2010, 06:02 PM
I was so surprised to see this forum since I just came here to look at diapers, but what a wonderful surprise.

I have 4-year-old twins (boy/girl) and expecting our next baby boy in December. My sweet boy was diagnosed with PDD in May 2009. I had known something was "off" for quite a while, but my pedi and most of my family was quite insistant that everything was fine so I tried to let it go. That of course didn't happen and I started researching on my computer for hours and hours every night after everyone was sleeping. I had pretty much diagnosed him myself before we ever got the ball rolling for evaluations. I had to fight with my pedi for the recomendation (we've of course changed pedi's since then), but I won and we got an appointment.
We took him to a DAN dr before his diagnosis and started on the GFCF diet then. We removed soy first to do a test (don't remember which now) and within the first week he went from saying a 4 word sentence at the VERY most to saying an 8 word sentence. Talk about one happy, believing, converted mama. When his allergy tests came back he was allergic to every.single.thing they tested him for. We've removed all the 3-6's and get to have him tested again soon to see if anything can be added back in. He does have speech and ot and has been making some remarkable strides. His pre-k teacher says she doesn't think he'll have to be in the autism class for kindergarten next year.
Sorry that seems so rambled. We still have a long way to go, but the journey seems to be getting shorter and shorter. And for that my family is truly blessed and thankful!!

eragsdale
07-17-2011, 08:44 AM
Where would I find an emotions board?

Suzi
07-30-2011, 06:04 PM
I don't know for sure. This thread is pretty dead anymore, you could ask under special needs

Maddalena
01-13-2012, 10:07 PM
Hi, I'm brand new here. I'd just like to say I have a teenager with autism. He's 13 and its pretty high functioning. I've been through it all I swear! We are now urged by the psychiatrist to give 3000 mg of fish oil....studies show this can help a lot....will let you know if we notice any changes.

JasonsMama1
01-16-2012, 07:39 AM
Hello everyone. I just felt I had to comment. My son is now 4. He was dianosed on the Autism Spectrum last year, and he is also profoundly deaf, in both ears. It has been such a struggle for us, as new, young, first time parents to deal with this. You never think it's going to be your child, you thinnk this could never happen to me. And, when it does, it's devastating. We are having to many problems with speech, and communication and potty training. He's 4 and has no words. he signs only when he wants to and we've taken the total communication approach and nothing seems to be catching on. I think the deafness would be one thing, and then the Autism on top of it really, really interferes with the communication aspect. If anyone has any tips or helpful tricks that would help us out we are open to just about anything at this point. We did speech therapy, and OT and Aural Rehab for the past 2 years and I've seen no advancements. I don't understand what the point it. Thanks!


~Mother In Need!

turtlebutterfly
01-25-2012, 08:53 PM
my 9.5 yr old daughter has autism

BebeMaker
01-29-2012, 07:16 PM
Hello everyone. I just felt I had to comment. My son is now 4. He was dianosed on the Autism Spectrum last year, and he is also profoundly deaf, in both ears. It has been such a struggle for us, as new, young, first time parents to deal with this. You never think it's going to be your child, you thinnk this could never happen to me. And, when it does, it's devastating. We are having to many problems with speech, and communication and potty training. He's 4 and has no words. he signs only when he wants to and we've taken the total communication approach and nothing seems to be catching on. I think the deafness would be one thing, and then the Autism on top of it really, really interferes with the communication aspect. If anyone has any tips or helpful tricks that would help us out we are open to just about anything at this point. We did speech therapy, and OT and Aural Rehab for the past 2 years and I've seen no advancements. I don't understand what the point it. Thanks!


~Mother In Need!

Hugs to you Mama! My dd is 6 and has Autism. I'd totally recommend keeping up with the therapy, especially if your ds seems to enjoy it at all. Is he also in ABA? (Behavioral Therapy?) That's where our dd made her greatest advancements! I'd talk to your doc about it, or ask the school.

Alorasmom
02-06-2012, 10:43 AM
When our son was diagnosed with Asperger's we had some genetic testing done and found out he can't excrete heavy metals such as lead, mercury etc. We started chelation with him and he went from verbal but repeating everything to being able to actually being able to answer questions and you can have a conversation with him now. I know it is a hot topic but if anyone has any questions i might be able to answer them.

naynaygoesrawr
03-19-2012, 01:43 PM
Does anyone else's lo try to sneak outside and succeed? What tips can you give me? My 4 year old knows how to pick locks from the outside and can get almost anything open. Im scared for his safety o.- and im at my wits end.

iris0110
03-19-2012, 07:09 PM
Does anyone else's lo try to sneak outside and succeed? What tips can you give me? My 4 year old knows how to pick locks from the outside and can get almost anything open. Im scared for his safety o.- and im at my wits end.

There are alarms you can use, anything from super simple that just go off when you open the door to more complex. I am assuming he is too clever for things like sliding locks to be effective. An alarm probably won't keep him in but it will alert you that he has escaped. I was an escape artist as a toddler and gave my mom fits, especially when I almost drown myself in the lock behind our house.

http://www.amazon.com/Home-Security-Wireless-Alarms-Chimes/dp/B0035GAXT4/ref=sr_1_3?s=electronics&ie=UTF8&qid=1332205629&sr=1-3

If he has sensory sensitivities the noise of the right alarm may be enough to deter him, or maybe not but at least it gives you notice. Wish I could be more help.

Suzi
03-19-2012, 08:41 PM
Yep. Its getting better now (my son is 6). We have the cheapy alarms you put on doors to alarm when they open. I had higher up locks too.

I also got labels that I put in my sons clothing with our last name and phone number. He's not verbal so I always worried about this.

What helped the most was getting him plenty of outside time

My ex has more money than me and he has a really nice alarm system so when a door is opened it gives a verbal command. My yds hated the buzzer enough that he didn't want to risk it.

naynaygoesrawr
03-20-2012, 09:21 AM
Thank you ladies I am looking into door alarms and maybe a tracker for him!:)

cody82414
07-06-2012, 04:55 AM
Hi ladies!!

My DS4 is at the same stage, and it is scary.
He just unlocks the door and walks outside.
I am a SAHM, so I usually hear him (the door squeaks)
but there have been a few times that I have panicked!!

Laura Lou
07-18-2012, 11:06 PM
My son is 2 and we just started him on a gluten/milk free diet about 3 weeks ago. It is going great, but I am running out of thoughts for different foods....and money trying to do this. My son is a picky eater and I feel very limited on ideas.
His favorite is pasta. He likes bananas and some other fruits but is not a veggie fan. He does not like the feeling of mashed potatoes or anything else like it. I am hoping to find some gluten/milk free bread and crackers at the health food store next run, but I am afraid it might cost an arm and a leg.

Do any of you mamas have any other food ideas for me? I am new at this and would love any other ideas! Thanks a ton! :goodvibes:

in medford, or ashland oregon, i used to buy corn pasta (it said polenta pasta). it was delicious. and it cooked in 3-4 minutes. wasn't expensive.

rice dream rice milk is good. plain sweetened, also vanilla. and rice dream mint pies are dairy-free "ice cream" with oat cookies. delicious. i haven't checked these for gluten, just think they might be gluten free. can't remember for sure. Vanilla flavored sweetened almond milk is good. (I have
"Silk pure almond" right now. it's good.)

yuca is a different starch flavor. you can boil it or fry it. (cut in 3" sections, cut the sections into manageable shape/size. boil in a change of water with all the white/pink peel off. about 1/8 inch thick peel. throw out the water. it has a toxin. but the yuca's really good for you. aka cassava, tapioca, manioc.) if frying, boil first, i think. Tastes really good. Like Chestnuts.

spaghetti squash? butternut or blue hubbard squash soup?

fresh orange juice? get juice oranges (valencia) not navel, which are difficult to squeeze.
steamed broccoli, with lid off a litle so the broccoli stays a pretty green? w/ salt and butter (counts as dairy?)
if he'll eat soup, cook zucchini to tender but bright green with salt to taste in the water. maybe a little fresh garlic, too. put whole thing in blender with some extra virgin olive oil.
do the same with cauliflower. use the fresh leaves, too, if you have some. they make pretty green and change the flavor.
These sort of soups can also be used as sauces, or mixed w/ tomato sauce, etc. You can put it on pasta or white rice, or whatever he'll eat, to boost veggie intake.

fashionzheng
07-25-2012, 01:49 AM
*pump it

Overcome all difficulties

fashionemma
07-25-2012, 02:00 AM
pump it
:bumpsign::bumpsign::bumpsign:

cody82414
07-29-2012, 10:03 AM
ugh.

I am dealing with smearing now :yuck:

Sldalton81
08-03-2012, 12:43 PM
My DS was diagnosed with high functioning aspergers 2 weeks ago...

Suzi
10-28-2012, 06:27 PM
ugh.

I am dealing with smearing now :yuck:

As in his underwear? At least it would containable :/ We have streaks in the undies on a regular basis but his bms finally became fairly regular.

cody82414
11-04-2012, 05:38 AM
As in his underwear? At least it would containable :/ We have streaks in the undies on a regular basis but his bms finally became fairly regular.

oh no:giggle:
I mean literally handling his poop.:yuck:

BCGamerMom
01-04-2013, 09:51 AM
Hello Ladies
Just wanted to do a little intro, I've been around here for years but never really got into any of the chat threads just FSOT and occasional Q&A.

I've been trying to find a good place online to talk to other ASD parents that might have similar lifestyles and I had a duh! moment when it occurred to me that there was probably a DS forum for parents of special needs kids and so here I am.

I'm Canadian, mom of 3, my 9 year old DS has Dx of SPD (at 3),ADD (at 8), and PDD-NOS(finally in November), my 4 year old DD is NT, and my 2.5 year old DD has just started OT for SPD and we see the pediatrician next week to start the process of getting her in for ASD assessment. I work part time, happily do not home school so I'm dealing with IEP stuff and therapy and a husband that works out of town and trying to retain a babysitter that is brave enough to handle my brood so I can make it to the arena to skate twice a week for roller derby so I don't lose my mind and end up curled up in the fetal position rocking back and forth while reciting the theme song from which ever disney movie has been playing on endless loop this week.:gah::)

Suzi
01-21-2013, 08:40 PM
Hello Ladies
Just wanted to do a little intro, I've been around here for years but never really got into any of the chat threads just FSOT and occasional Q&A.

I've been trying to find a good place online to talk to other ASD parents that might have similar lifestyles and I had a duh! moment when it occurred to me that there was probably a DS forum for parents of special needs kids and so here I am.

I'm Canadian, mom of 3, my 9 year old DS has Dx of SPD (at 3),ADD (at 8), and PDD-NOS(finally in November), my 4 year old DD is NT, and my 2.5 year old DD has just started OT for SPD and we see the pediatrician next week to start the process of getting her in for ASD assessment. I work part time, happily do not home school so I'm dealing with IEP stuff and therapy and a husband that works out of town and trying to retain a babysitter that is brave enough to handle my brood so I can make it to the arena to skate twice a week for roller derby so I don't lose my mind and end up curled up in the fetal position rocking back and forth while reciting the theme song from which ever disney movie has been playing on endless loop this week.:gah::)
:wave: we don't use this thread on here much anymore but there are tons of moms in the sn section with asd kiddos. I have a 6 yo ds that is autistic, 8 yo ds I call semi-typical, and 8 yo dsd that is nt. they all go to public school although we still have plenty of work to do at home:goodvibes::goodvibes:

iris0110
01-21-2013, 08:56 PM
Hello Ladies
Just wanted to do a little intro, I've been around here for years but never really got into any of the chat threads just FSOT and occasional Q&A.

I've been trying to find a good place online to talk to other ASD parents that might have similar lifestyles and I had a duh! moment when it occurred to me that there was probably a DS forum for parents of special needs kids and so here I am.

I'm Canadian, mom of 3, my 9 year old DS has Dx of SPD (at 3),ADD (at 8), and PDD-NOS(finally in November), my 4 year old DD is NT, and my 2.5 year old DD has just started OT for SPD and we see the pediatrician next week to start the process of getting her in for ASD assessment. I work part time, happily do not home school so I'm dealing with IEP stuff and therapy and a husband that works out of town and trying to retain a babysitter that is brave enough to handle my brood so I can make it to the arena to skate twice a week for roller derby so I don't lose my mind and end up curled up in the fetal position rocking back and forth while reciting the theme song from which ever disney movie has been playing on endless loop this week.:gah::)

I just wanted to say hello to a fellow Roller Derby mama! :goodvibes: Actually it is Dh and my youngest kiddo who skate derby, I just hang out with them. So far the guys have been unable to plead enough to get me out there. I told them it is because they don't want to deal with teaching me (I skate just fine but my kids get their SPD from me and I have an inability to judge distance while moving meaning I hit things a lot and it freaks me out). I also reminded them that in the end they would expect me to skate with the girls and I love my guys too much for that. I spose I could always go team zebra and probably will eventually if I can get over that whole "too many things happening at once" thing I have going on.

My oldest is 11 and diagnosed PDD NOS, SPD and Anxiety NOS. I am presently trying to figure out how to juggle a very unsuccessful year of homeschooling (previous years have gone well but he is hitting puberty and it is getting ugly here), OT, ST, social skills group and maybe ABA plus work him in with a new doctor. Meanwhile my youngest is 7 and diagnosed Mood Disorder (bipolar) and ADHD (his doctor says that probably isn't accurate it is probably just his manic phase) and I am trying to work out his medication. I've found that Derby is what keeps Tharen (the little one) level and I would keep him in the rink with the guys all day every day if I could. Heck I would have his guys live with us and teach his home school classes if I could pull it off. He respects them more than he respects anyone else in his life. Unfortunately the rink decided to cut our practices back to one a week and broke his heart. We can practice with the girls but they won't take on the liability of him skating with them so only dh can skate. Dh teaches Taekwondo 4 days a week and our whole family is involved with that but Tharen isn't into it (it was really more for Kearnan). If I miss too many classes I can feel my grip on sanity start to slip. Sometimes it is just easier working with some one else's kids than dealing with my own.