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Old 05-22-2007, 03:57 PM   #101
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Re: parents of autistic children

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.

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Old 06-03-2007, 03:48 AM   #102
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Re: parents of autistic children

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
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Old 06-04-2007, 02:43 PM   #103
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Re: parents of autistic children

wow, I am so glad to hear that things seem to going good with you and your little guy!
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Old 06-25-2007, 11:50 AM   #104
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Re: parents of autistic children

we just started methyl B12 injections with DS has anyone else done these or heard about them?
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Old 07-15-2007, 10:20 PM   #105
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Re: parents of autistic children

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.
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Old 07-19-2007, 10:17 AM   #106
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Re: parents of autistic children

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 ), 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 ).

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 )...but he is a GIFT and such a blessing.

Anyway, just wanted to say hi and share our story
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Old 08-27-2007, 10:29 PM   #107
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Re: parents of autistic children

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.
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Old 09-15-2007, 09:33 AM   #108
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Re: parents of autistic children

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.
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Old 09-17-2007, 11:44 AM   #109
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Re: parents of autistic children

Quote:
Originally Posted by beautiful7 View Post
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.
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Old 09-17-2007, 12:10 PM   #110
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Re: parents of autistic children

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.
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