SID or SPD Parents come join us!

[LisaV]

Are there any parents out there with children that have Sensory Intergration Disorder? My son is 3 and has been seeing a therapist for a year now. I do not meet many families that have experience with this. He is sensory seeking and has some auditory issues (ie can't seem to talk with an inside voice or ignoring when called). Yes a lot of 3 year olds do this but his is extreme.

He has seen an OT and now a Play therapist. Please if anyone is out there I would love to talk. Thank you.

[house-of-boys]

My "real" kiddos don't, but I work with quite a few kiddos at school with SID. It's a daily struggle and I can only imagine some of your difficulties.

[2Pinks]

My oldest daughter who is also 3 year old (she will be 4 in August) has this as well. THough she was diagnosed with Sensory Processing Disorder - is that the same thing? She went to OT for a year and has "graduated" just recently. Our therapist says its always better when they are diagnosed and get treatment early as the therapy tends to help them integrate quickly.

Madeline had/has texture and touch issues and her proprioceptive sense of self was out of kilter. Her therapy has worked wonders!

Poor girl also has Celiac Disease and grade 2 bladder reflux and was just diagnosed with seasonal allergies last month.

[iris0110]

Kearnan has sensory integration disorder, or sensory processing /perception disorder, depending on which specialist I ask. Pretty much my whole family has some sensory stuff going on, his is just a tad more extreme (though mine can be a real issue, ask dh :giggle: ). He is a bit of a paradox even in the sensory world because he has sensory seeking and avoiding tendencies, sometimes in the same categories. Like he can't function if more than one person is talking, and he screams and covers his ears at most noises, but he seeks out music, and will turn music up really loud and press his ear against speakers. He has similar touch and sight stuff. He's been recieving therapy for over 4 years now. He is also pdd nos and speech delayed (though at this point he doesn't much qualify for the speech delay diagnosis anymore).

[babygirlsmom1005]

Madeline has SID/SPD or whatever you want to call it. She is sensory avoiding, also having issues with loud noises. She has been seeing a OT since she was under a year old (now she is 31 months). We're about to start a new thearpy program that is outside the house to hope that helps with her. The bad days consist of her screaming, hiding in her body sock, not using words at all (point and grunt if we're lucky) and not wanting to be touched or touch anything (socks on hands and feet, using elbows or other body parts to move stuff).

She also has a lot of food allergies (dairy, soy, wheat/gluten and eggs), seasonal allergies/allergy related asthma, reflux (even though has had surgery for that, we think the surgery has failed), etc...going on....poor girl can't get a break sometimes.

[nrae74]

My Joseph has Sensory issues, he is sensory seeking and avoiding, but mostly seeking. They have been hesitant to diagnose but he has been going to OT for over a year , since he was about 20 months old, he is now 3 and we are about graduated which is scary because we have a lot of daily work to do at home still and the therapist was really an anchor. It is rough, but the therapies help so much!

[LisaV]

Thank you mommas for your responses. I know that SID/SPD is a newly recognized disorder. We have been trying many things with DS. He does a spinning wheel which is like a large lazy susan for the table but kid size. He was trying a sound program (not sure of technical name), but he wouldn't sit still long enough to listen even with cordless head phones. Most days it is just trying to get him to slow down. Right now he has been up for 2 hours and has been all over the house and ready to go outside. For us he is always trying to find things to satisfy his senses. My worst fear is that others do not understand that he is different and think he is just a naughty child.

He is the most loving child. He loves to give hugs and say he loves you. He is truly sorry when he has done something that has hurt others but just can't seem to stop before it happens (even if you are right there reminding him). Well I better go track him down again.

[nrae74]

Thank you mommas for your responses. I know that SID/SPD is a newly recognized disorder. We have been trying many things with DS. He does a spinning wheel which is like a large lazy susan for the table but kid size. He was trying a sound program (not sure of technical name), but he wouldn't sit still long enough to listen even with cordless head phones. Most days it is just trying to get him to slow down. Right now he has been up for 2 hours and has been all over the house and ready to go outside. For us he is always trying to find things to satisfy his senses. My worst fear is that others do not understand that he is different and think he is just a naughty child.

He is the most loving child. He loves to give hugs and say he loves you. He is truly sorry when he has done something that has hurt others but just can't seem to stop before it happens (even if you are right there reminding him). Well I better go track him down again.

Yes! that describes Joseph to a tee! and unfortunately a lot of people DO just think he is a naughty child..........wdyd?? He has a "speed meter" and I try to recognize when he is getting to that "can't control himself" stage and if I can't get outside we do some calming strategies that "sometimes" help. and "quiet activities" that are sensory/fine motor ( water play, cherrio art, shaving cream)

[Livibellas Ema]

My three year old daughter was originally just thought to be quirky with some OC tendencies. I kept telling my DH "no I read about SID and I think this fits" I did not want to seem paranoid so when my DH said he didnt think so I dropped it.
Now 6 months later a SW I talked to about fast tracking an OT eval (everywhere I called was 6 months out) asked if anyone had ever spoken to us about Sensorey Integration? I said no but I have thought this for awhile. So now we are in the beggining stages of OT with her. They believe it may be SID or PPD. I just wish we had gotten the Rx as early as you did!
Please feel free to pm or email me as I know what this is like. My daughter spins, flaps her hands, yells, ignores voices, zones easily, she also has a tendency when unsure what to say to reply with quotes from books, movies or tv. She panics and screams if there is hair in the bathtub or dirt on the slide. The wort side effect is that she has only slept through the night a few times in three and a half years! She does not seem to need to sleep.
Thanks for posting this! It is soooo nice to know I am not alone!

[TestifyToLove]

Our newest lo was evaluated by PT during his recent hospital stay. The PT asked an OT to sit in informally since there was no doctor's order for OT eval. The OT is 100% certain that we're looking at SID. His IEP coordinator says we'll get him eval'd in his IEP when we get it worked up for fall. But, I'm getting the name of a private OT to get him eval'd sooner.

OT said the SID/SPD could mask as the MR he was dianogised with, in that a child's cognitive abilities can completely shut down when they are overwhelmed.

I can tell you that M is extremely sensory seeking, extremely self stimm'ing with a history of extreme sensory diprivaty. I can also tell you even a tiny bit of stimulation sends this child spiralling out of control behaviorally. So while he seeks it out, he cannot handle it at ALL when he finds it.

[LisaV]

SO how was everyones day today? We had it rough. At preschool he even had to sit out from a few activities. This is one of the first times that this has happened. Plus I think the combo of DH gone for week and half home 4 days gone another week has not helped him.

Today has been a very touchy day. Tackling sister, running things over, playing in the dirt, rolling in a sleeping bag. This is one of his favorite things to do that the OT taught us. Roll him up in a blanket snug and then unroll him by pulling on the other end. He loves this and could do it for hours.
Of course I have misplaced one of my books that covers all different sorts of activities to do with a SID child. Once I find it I will post the title so if anyone else is interested.

Another book for an intro is "Raising a Senosory Smart Child" by Lindsey Biel and Nancy Peske. It also has a few activities you can try at the end of the book along with websites and organizations.

If anyone else out there and has done any reading let me know.

[ty&jessie]

My ds who is almost 4 (june 16) has SID/ SPD as well. He is both seeking and avoiding in many areas. He has been going to therapy since he was 13 months, but has been out of therapy for the past year. From his birth on he has had difficulty eatting and had have a feeding tube because he became faluire to thrive. He has been a whole year without the tube now ( he drinks pediasure or the like)I am a little nervous about him starting preschool in Sept....I too worry people will think he is just a naughty little boy. Just recently our dr. suggested ADHD meds to help him to mellow out enough to eat and sleep ( he sits at the table but climbs down every few mins. to jump up and down and flap his arms) I am tempted to try them as he is a LOT of child lol, but I worry about the meds in general. Just not sure what to do yet. Glad there are more of you to share with:mrgreen:

[LisaV]

I understand the table thing. It was recommended to us to use a timer and start off slow. We started with 3 minutes that he was asked to join us at the table. When the timer went off he was able to get up. We are upto about 10min. without him sitting side ways, laying on his tummy, on his back, flapping around, and whatever else he could come up with.

We also like to give him heavy chores. These are items where he has to exert energy to assist us. Such as helping carry a laundry basket, lifting a gallon jug of water. Going on a long walk and he has to walk along side or even help push DD in the stroller. This seems to help when we can get him to try.

Have a good weekend mommas. We will be out camping this weekend. Keep posting. Remember I love to hear suggestions and ideas that have worked or not worked so well for your family. It is just nice nowing that there are others out there to touch base with.

If ever you need a shoulder to vent on feel free to PM or email me.

[nrae74]

I understand the table thing. It was recommended to us to use a timer and start off slow. We started with 3 minutes that he was asked to join us at the table. When the timer went off he was able to get up. We are upto about 10min. without him sitting side ways, laying on his tummy, on his back, flapping around, and whatever else he could come up with.

We also like to give him heavy chores. These are items where he has to exert energy to assist us. Such as helping carry a laundry basket, lifting a gallon jug of water. Going on a long walk and he has to walk along side or even help push DD in the stroller. This seems to help when we can get him to try.

Have a good weekend mommas. We will be out camping this weekend. Keep posting. Remember I love to hear suggestions and ideas that have worked or not worked so well for your family. It is just nice nowing that there are others out there to touch base with.

If ever you need a shoulder to vent on feel free to PM or email me.

Have fun camping!! I know for Joseph, busy busy busy is the way to go! and definitely heavy work so camping is great!!

Just a quick mention of the table thing we do: strapped in the booster with a rice sock across his lap.........helps occasionally. Mostly though he sits on a Moshi pillow so he can wiggle and rock! he likes that most the time but a lot of times just nothing works! :lostit:

[kthoelen]

My dd was just diagnosed with SPD also. She is also sensory seeking and sounds just like your lo. She also doesn't know where her body is in space, she hates being upside down. She also likes very hard massages. When she gets upset she wants me to squeeze her. She goes to therapy 1x a week. We just started and I still have no idea what to do to help her cope on a daily basis.

[LisaV]

Coping day to day is the best way. We continue to love them and support them no matter what. Stay subscribed to this thread and share your struggles or achievements with us. OKAY I found the activity book I have for DS: Some of the activitiess in it are not all handy around the home but there are many that he loves and it helps teach him to clean up afterwards :thumbsup:.

Carol Stock Kranowitz's
http://ai.pricegrabber.com/muze_images/books/4/39/9780399528439_150x150.jpg She also has a book out that is just called "The OUt of Sync Child" that is a little more in depth than the previous one I listed.


We went camping over the weekend and survived. DS had a great time and the 3 mile hike he went on really tuckered him out. He also had the chore of getting any water since it was right next to us. The biggest struggle was getting him to stay near the tents while we cooked or just leaving the dog alone for awhile. This was a show of his auditory problems of we know he hears but doesn't process what we are saying after about a million tries in a row.

So far today we are having a good day. He is only invading his sisters space, my space, and daddy's a handful of times. I pray that his day at preschool goes better than yesterday.

Have a good day momma's!

[nrae74]

Coping day to day is the best way.

I'll second that! We have been having more good days than bad lately!:thumbsup: For me, if I am not bawling at the end of the day, thats a good day:lostit:

That made me laugh about leaving the dog alone:giggle: Our poor dog is forever trying to find a better hiding place! And thanks for the book recommendation, I will have to check that out.

Here is a link to great sensory/OT toys:

www.beyondplay.com

[Irishmommy]

My older ds has SID. He was diagnosed about 5.5. Now he is 7. He saw a play therapist first, then (and now) an OT. He goes once a week to ot and it is helping TREMENDOUSLY. I can tell you mammas, with the right treatment, it WILL get better. We just started our ds on meds in December, we held off for the longest time. It has really helped too. And it hasn't changed who my son is, which is what I thought it might. Meds aren't for everyone, but it has certainly helped my son. He notices a difference when we forget to give it to him. Anyway, just wanted to give you other mammas a ray of hope that things do get better.
:thumbsup: :hugs:

[slipp]

My daughter is 21 months old with sensory processing disorder...though, i'm almost positive its mild autism. We have her apointment in june (in a couple of weeks!) to start the "testing" process for autism. Our daughter is sensory seeking in many ways & has horrible feeding problems. We've been in early intervention for almost a year working with a speech therpist and an OT! Things are REALLY improving! I understand how hard it is, as a parent with a child who has SID.

[LisaV]

SO we have been having a great past couple of days here. I am also excited because one of the children's centers near us has a summer program that is group sensory intergration for 9 weeks on Thurs. an hour for the session and only $150 for the entire summer. This is great because then we maybe able to cut back a little on his therapist since we have to pay full price.

How is everyone elses week going?

[TieNappyQueen]

Are there any parents out there with children that have Sensory Intergration Disorder? My son is 3 and has been seeing a therapist for a year now. I do not meet many families that have experience with this. He is sensory seeking and has some auditory issues (ie can't seem to talk with an inside voice or ignoring when called). Yes a lot of 3 year olds do this but his is extreme.

He has seen an OT and now a Play therapist. Please if anyone is out there I would love to talk. Thank you.

i really need this today we are having alot of issues with e, he is a seeker as well and it is starting to affect personal relationships with friends and emotional one with me.

[TieNappyQueen]

Thank you mommas for your responses. I know that SID/SPD is a newly recognized disorder. We have been trying many things with DS. He does a spinning wheel which is like a large lazy susan for the table but kid size. He was trying a sound program (not sure of technical name), but he wouldn't sit still long enough to listen even with cordless head phones. Most days it is just trying to get him to slow down. Right now he has been up for 2 hours and has been all over the house and ready to go outside. For us he is always trying to find things to satisfy his senses. My worst fear is that others do not understand that he is different and think he is just a naughty child.

He is the most loving child. He loves to give hugs and say he loves you. He is truly sorry when he has done something that has hurt others but just can't seem to stop before it happens (even if you are right there reminding him). Well I better go track him down again.

honey i wish you were here we could sooo relate. I am looking for a support group for this here because this is really wieghing on me. We got this swing from ikea almost a year ago and keep it in his room
http://i175.photobucket.com/albums/w158/Namaste0427/IMG_0784.jpg
total life saver he calms down when you get it on super spin.
Plus we take ALOT of showers bring shim down and fulfills alot for him i think
I am also looking into equine therapy for him.

[LisaV]

Hello,
I love the swing. They had one similar at his old OT's office. I will have to look into finding one for him. That swing was the only time that he settled down enough to listen to the listening therapy they had us trying.

This week has been rough. I'm not sure if it is the weather but DS is having a difficult time recognizing where his body parts are in relation to others and objects. Also he is bouncing off the walls, swinging "swords" his newest favorite imaginative toy.

My sister was nice enough to take him for a few hours today because I have been struggling the last couple of days with him. I can't wait to start his new play group in June. I hope it goes well.

[TieNappyQueen]

this week i swear!! it has been bad! i am getting really upset with other people saying there is nothing wrong with him even after being dx. and then the judgement i am getting from strangers when he throws himslef into clothes racks and destroys the house and has no idea that there are others around him and they FEEL stuff, i don't think he feels pressure unless is is deep or hard
our boys sound VERY similar

[LisaV]

Yup I think they sound very similar. I try to end the week and pray that the next one starts better. Every once in a while I just need to sit down a calm myself before I blow up on him. The other day he was tired, over energized and would not make any decisions.

We left the class he was signed up for and on the drive home I just had to ignore him because I was tired of the exact same question a million times. It is like once he has it in his head it is stuck there for the next few hours and then will reapear a few days later to start all over again.

DD is learning to be a tuffy around him. She is just over 1 and runs when she has a toy and sees him coming, or swings around away from him. We are teaching him that he needs to use his words and not his hands. This is difficult especially when he is in an over reactive mode.

I hope the end of your week goes well and you start the next week on an uphill.

[xelasminin]

yes! My son is 3, and has had therepy in home for a year, and now that he's 3 we go to an outpatient therepy unit.

he is also a seeking kid. he loves TIGHT hugs!! I'd love to have someone to talk to about it because it is hard to deal with. :( and like you I don't know anyone that has delt with it before!

[TieNappyQueen]

well we hav each other!
Lisa how old is you ds? MIndy yours is only 2 monthes older than e.
IT is so hard that most people don't get it. I think it is because he looks like what people call 'normal' so they expect him to act 'normal' and then others just try and tell me he is strong willed. :banghead: they have no idea. E loves the tight hugs but he loves when you streamroll over him and lay on him. Spining, what we call the hamster wheel, he will get in a repetitive string of activity, touch the corner run by the table, hit the table dive in the couch, over and over and over. ANd lisa "the repeater' makes me want to scream. " go outside go outside go outside go outside..."
Do your boys have to eat CONSTANTLY!?

[TieNappyQueen]

oh and mindy i am sooo going to try and get a few of your neclaces! THose are amazingly beautiful!!

[LisaV]

DS is 3 also. One of our favorite activities that you could try when you don't feel like chasing them is rolling them in a blanket tight and then holding the other end to unroll. This gets their motion needs and the pressure all in one. DS just loves it. I do this when I am tuckered out from chasing and cleaning up after the G tornado has hit :giggle2: . It is also something we can do near the tv so once and a while I can catch the news.

We had a great day. We went to our local town celebration and all of the activities and movement there I think actually kept up with G. He also tried the kiddie tractor pull but was more interested in watching the weight machine he was pulling than actually pedaling. It was fun though.

How was everyone elses day or week been?

[LisaV]

Forgot to answer your question about eating. Yes! G is always hungry. Of course we do our best to keep junk food out of the house because the second he knows it's there he finds a way to get at it. He has been able to do those safety locks of all types since about 2 and being fearless he will climb anything. I think it is harder to keep him drinking because all he wants is milk and he is very limited on his allowance of that.

[TieNappyQueen]

oh they are so much alike!
today is alright but it is minute by minute!

[themickey1]

My 4 year old has sensory issues, auditory issues, developmental issues, and my 5 year old has sensory issues. I can't tell you how long it takes us to get dressed of a morning because my 5 year old has to have clothes that feel JUST RIGHT.

[LisaV]

So our Play therapist has finally recommended that we get an official diagnosis for sensory intergration dysfunction. We are hoping that with this he will be diagnosed with sensory seeking and also auditory filtering and this will help with getting him into an early childhood program here. Because he is a borderline child (mainstreamed and can attend regular preschool) they may not accept him or even test him intially through the school district. Now with a second diagnosis they will hopefully consider him.

I live in a small community and they are very selective who is accepted into the early childhood special education program here.

So far so good. This week has been great. Leaving little sis alone for the most part. Lots and lots of outside time. Even attempting to get dressed on his own!

[TieNappyQueen]

yeah outside it the best treatment here. WE got e diagnosed by a child pyschologist tricare covered it, I am so glad we did i knew he had it but this made it offical for therapy and stuff ya know?

[xelasminin]

hey guys! I didn't see anyone had replied to the thread! I wasn't ignoring ya! :D

Thank you Alyrie on your comment to my necklaces! :P

Hunter LOVES being steam rolled too! Our therepist gave us an excercise ball to roll over him. He also LOVES his limbs being pulled on. He'll slow down from doing anything when you pull and tug on his arms or legs.

[LisaV]

I'll have to try the limb pulling. I know when we did this little piggy he would want it done over and over again. I would finally stop after about 20 mins of it.

Not much new here. Trying to adjust for the summer months ahead. It was a rough weekend but we also had a garage sale going on so it was kind of expected. Can't wait we start his new group sessions this week.

How was everyone elses weekend?

[LisaV]

SUPER CRAZY DAY! Glad it is almost over. We have been bouncing off the walls since 6:30am. Got to go out and play in the rain though :giggle2:

We had a good 20 minutes of buritto roll. (Roll up and unwind in a blanket). Hope tomorrow is a little calmer.

How is everyone elses week going?

[xelasminin]

well I've found out my daughter for sure isn't looking like she's going to suffer having any sensory problems. Something I've been afraid of. She'll crawl around in the grass like no ones business!!!

I'm going to try burrito roll tomorrow!!!!!!!

I'm trying to decide if I want to keep hunter in therepy or not. they don't do near as much with him as our inhome therepist. *sigh*

[mhr1406]

Hi
I have 2 boys and they both have sensory intergration disorder.

Alex is 7 and was dx at 18 months and Logan is 2 1/2 and was dx at 22 months.

[~Peach~]

My 6 year old was diagnosed with SID at the age of 3. Shes gotten much better since then but we are still having some issues with communication and trying to get her to not freak out about certain things.

[~Peach~]

I had no idea there were different sub categories to this disorder. I guess my dd would be classified as sensory avoiding. She to this day hates loud noises and screams if something is too loud. The 4th of July is real fun in this house :(.

[LisaV]

Welcome: It sounds like she has an auditory sensitivity. My son has auditory also but in the sense that he hears you but does not always process what you are saying or what he is hearing. Today it has finally stopped raining so shortly we will be going outside for a few hours.:lostit:

[xelasminin]

lisa - isn't it great how the outdoors seems to settle them down some sometimes? when hunter would get bad and hit and bite and scratch and get all wound up I'd put him in the stroller and go for a walk! He'd be much better after the walk!

[LisaV]

I understand that. We are trying to do at least one short walk a day. HE loves to go up and see the cows or horses near our house. Also if that doesn't work we take his bike and he gets to ride that when we go down a short dead end road.

We are going to the zoo tomorrow and DS is happy and can't wait. He wanted to go today when we discussed it. I pray that the weekend gets better. We are going to a friends house with two goats riding in the car so this should be interesting.

[amberof2]

Yes a lot of 3 year olds do this but his is extreme.

He has seen an OT and now a Play therapist. Please if anyone is out there I would love to talk. Thank you.


I totally know what you mean!!! I was trying to explain this to a store clerk at the knitting shop the other day and she looked at me condescendingly and said, "Yah, I think all little kids are like that." I wanted to smack her and then say, "Oh does your son have autism with sensory integration disorder too?!"

Anyway, Jonathan turned 4 in Dec and we were given the formal diagnosis two days ago. He's been receiving therapy for "global delays" since he was two and we've been paying out of pocket for speech therapy for several months now.
Some of the things that we think are so special and wonderful about Jonathan also happened to be the very same things that put him in the autistic category.
The way he closely examines everything to see just how it worked, train wheels, door hinges etc.
How good he is at self-play - he was our first so we had no idea how NOT normal this was until his sister caught up with him then passed him.
How he picks up the sound effects in the videos he watches and is able to mimic them flawlessly.
How he can follow a tune to within nearly flawless pitch and then repeat it later - tuning himself if he feels the pitch is off.
The way a strictly followed bedtime routine will put him to sleep in minutes once his head hits the pillow.
Those are to name a few.
His sensory issues come in with his very limited diet and his need to have frozen blueberries a lot to keep his mouth stimulated, his need for deep pressure - we have "squish time" for that
:headscratch: I'm sure there's more that I'm not thinking of right now.

Anyway, I'm right here with ya.
:hugs:

[TieNappyQueen]

well I've found out my daughter for sure isn't looking like she's going to suffer having any sensory problems. Something I've been afraid of. She'll crawl around in the grass like no ones business!!!

I'm going to try burrito roll tomorrow!!!!!!!

I'm trying to decide if I want to keep hunter in therepy or not. they don't do near as much with him as our inhome therepist. *sigh*
go with your gut if you are doing well with the at home stick with that!
lisa - isn't it great how the outdoors seems to settle them down some sometimes? when hunter would get bad and hit and bite and scratch and get all wound up I'd put him in the stroller and go for a walk! He'd be much better after the walk!i need to find that article i have about how the outdoors is the best therapy for this disorder, it made perfect sense and was great!

I totally know what you mean!!! I was trying to explain this to a store clerk at the knitting shop the other day and she looked at me condescendingly and said, "Yah, I think all little kids are like that." I wanted to smack her and then say, "Oh does your son have autism with sensory integration disorder too?!"

Anyway, Jonathan turned 4 in Dec and we were given the formal diagnosis two days ago. He's been receiving therapy for "global delays" since he was two and we've been paying out of pocket for speech therapy for several months now.
Some of the things that we think are so special and wonderful about Jonathan also happened to be the very same things that put him in the autistic category.
The way he closely examines everything to see just how it worked, train wheels, door hinges etc.
How good he is at self-play - he was our first so we had no idea how NOT normal this was until his sister caught up with him then passed him.
How he picks up the sound effects in the videos he watches and is able to mimic them flawlessly.
How he can follow a tune to within nearly flawless pitch and then repeat it later - tuning himself if he feels the pitch is off.
The way a strictly followed bedtime routine will put him to sleep in minutes once his head hits the pillow.
Those are to name a few.
His sensory issues come in with his very limited diet and his need to have frozen blueberries a lot to keep his mouth stimulated, his need for deep pressure - we have "squish time" for that
:headscratch: I'm sure there's more that I'm not thinking of right now.

Anyway, I'm right here with ya.
:hugs:
welcome!
yeah we LOVE the frozen fruit here too, blueberries strawberries, watermelon, you name it he loves it, frozen peas and corn too.
we had MAJOR bedtime issues but like your dc was we found what works within minutes he is out which is still unreal!
e is like that with music, JOHHNY CASh is all i can say! that and Jolene by dolly will get him going anytime. He also LOVES to make up songs to his own tune for his tasks, "watering the plants watering the plants..."
self play too, i don't think his lil bro will be so indepentant i was spoiled there:giggle2:
e sees something once or hears it and it is there forever, he can swing a PERFECT gold swing, pitch just right all that kind of stuff

It is so good to see others that are just like us, it is so hard to explain even to really good friends:lostit:

[TieNappyQueen]

how is everyone? Just checkin in!

[LisaV]

Hello,
Started the testing to have the official SID diagnosis so we can hopefully get into early childhood. Now the wait is on to see what the OT comes back with. She said that there maybe some motorskills and self regulation other than that we didn't discuss much else.

DS also started Sensory Fun Days. It is an hour long on Thurs for 9 weeks over summer. They did body socks, brushing, and turn taking today. There are 3 other children in the group.

Going camping again. DS is so excited. All he has talked about is how he wants to help pack.

This week has been okay. DH left for Maine on Mon. and returns Friday after we leave. DS has struggled a little with this but not too bad.

DS also got a bigger bike and loves to just ride outside for hours. I don't mind I work on a few yard work chores then.

How is everyone else doing out there?

[LisaV]

Just checking in. How has everyone been doing?

We have got a pool recently and DS has decided that he is going to learn how to swim underwater. This is huge for us because he HATES getting his face wet. We will take it in small steps but at least he is making that decision. YEAH!

[TieNappyQueen]

That is so funny, e was all against the underwater thing until he saw the diving trials on TV the other day and now he keeps talking about how when we go to the pool this week he wants to go off the board so i can catch him and we can go underwater together. I can't wait!
WE have had a good two days, keep him outside and life is great. When we went to a party last night he got a little over stimmulated and crazy wanting to jump on the couch and run into the walls. I did the arm and leg squeezes the rest of the night was freakin awesome, listened played had fun ate his dinner, it was a good day. LOVE the arm squeeze trick.

[xelasminin]

what is the arm squeeze trick? I need to find something to calm hunter down when we come inside, he does well outside, but when we get inside he just goes nuts!

[LisaV]

I know one arm squeeze that the OT showed us was to gently pull and push at each of DS joints to make him aware of his body. (So at elbows, shoulders, wrists, ankles, knees, hips).

The other one my DS likes is to just give him a bear hug and hold tight or do what we call "Taco, Hot Dog!" I hold him in a cradle hold and then scrunch my arms together to make him into a taco and then release him lying flat in my arms to be a hot dog. We do with varying speeds and pressure and he just loves it.

[TieNappyQueen]

I know one arm squeeze that the OT showed us was to gently pull and push at each of DS joints to make him aware of his body. (So at elbows, shoulders, wrists, ankles, knees, hips).

The other one my DS likes is to just give him a bear hug and hold tight or do what we call "Taco, Hot Dog!" I hold him in a cradle hold and then scrunch my arms together to make him into a taco and then release him lying flat in my arms to be a hot dog. We do with varying speeds and pressure and he just loves it.

yep that is it!
He loves it to when I lay couch cushins on him and steam roll over him, or if I roll him in our comforter and then pull the one end so he spins as he unrolls real fast and then flys out at the end. I got beads in this room he can "carwash" through, I want to get those pool loodeles and hang them from the ceiling too. That is a few things you could try. I have some more too:thumbsup:

[xelasminin]

ok well earlier someone had suggested the "burrito roll" So I tried that today when he got really wound up and was biting me and stuff, I laid him in itg and rolled him up, but he got scared and said, "let me out!" although he put me in it and wanted to put catchup and pickles on me because I was a sandwich! LOL!

Maybe I"ll try unrolling him fast!

normally he likes being squeezed and stuff, so I'm not sure why he didn't like the burrito roll! I was so excited to try that!

[TieNappyQueen]

ok well earlier someone had suggested the "burrito roll" So I tried that today when he got really wound up and was biting me and stuff, I laid him in itg and rolled him up, but he got scared and said, "let me out!" although he put me in it and wanted to put catchup and pickles on me because I was a sandwich! LOL!

Maybe I"ll try unrolling him fast!

normally he likes being squeezed and stuff, so I'm not sure why he didn't like the burrito roll! I was so excited to try that!

oh sorry mama, you will find something what might not work today might work tommrow:goodvibes:

[LisaV]

Don't give up and keep looking for that special thing that will help everyone calm down.

Don't let him put too much catchup or pickles on you might overfill :giggle2: .

[TieNappyQueen]

Don't give up and keep looking for that special thing that will help everyone calm down.

Don't let him put too much catchup or pickles on you might overfill :giggle2: .

:rofl:
Have you tried to brush him? I let e pick out his brush today and it was great. It was the first thing I did at the store and he had it to brush himself with the whole time and we keep it in the car so when we are out it is always there as another tool in my bag of tricks!

[LisaV]

:rofl:
Have you tried to brush him? I let e pick out his brush today and it was great. It was the first thing I did at the store and he had it to brush himself with the whole time and we keep it in the car so when we are out it is always there as another tool in my bag of tricks!

That is a great idea. We have done brushing but usually DS doesn't sit still for that but maybe if he had his own brush. Thanks for sharing.

[LisaV]

Just checking in. How was everyone's weekend?

[meowmixx3]

my son is getting tested for this..He has a speech disturbance but he has a LOT of stims but they did rule out autism ..
He is more sensory seeking..His love is abusive; it sounds bad but I get bruises from his hugs..he flips from moods to moods...and a yarn store forget it he touches EVERYTHING has to feel everything, he acts like a 2 year old but on hyperdrive he flips from one thing to the next..
I'm just so overwhelmed right now i don't know what to think his therapist pointed out the obvious and had me do this questionarre and its amazing how many questions I said yes to.
What do the OT's do for therapy? TIA

[LisaV]

:hugs: mama. Hang in there.

Some of the basics that our OT's have done is the rubbing with an infant style brush. Just one of those soft plastic styles. You would brush all the different boby parts (arms,hands, legs, feet, back, head, etc) You can do this at varying speeds and pressures.

Our OT also did a lot of step activities. First go through the tunnel, then jump once (or similar things maybe doing a small puzzle or stacking blocks)

For speech we did funny faces in the mirror to start losing him up because he wasn't forming his mouth but held it in place (if this makes sense)

Played with different textures, shaving cream on a mirror to make a road and have a car drive through it, ball pit, etc.

Hope this helps some.

[meowmixx3]

he does have the speech therapist and doesn't have problems with eating or anything. but do they do the same thing with sensory seekers...?

[mommacubed]

Hi everyone. I've always "thought" that my son has SID due to a number of things. He started head banging at around 7 months of age and just recently stopped this (almost 4). He rocks repeatedly. He "W" sits. He can't stand to have his teeth or hair brushed or his fingernails cut. He won't have anything to do with any type of water activity (other than baths). When he is upset he'll repeat the same thing over and over and over while he rocks and bangs the back of his head on the couch. I think those are the only strange things that he does. Other than that he is extremely handsome, protective, smart,funny and sweet. He always tells me that he loves me. Anyway, just wanted to get your take on this and see if any of this sounds familiar to any of you.

[TieNappyQueen]

my son is getting tested for this..He has a speech disturbance but he has a LOT of stims but they did rule out autism ..
He is more sensory seeking..His love is abusive; it sounds bad but I get bruises from his hugs..he flips from moods to moods...and a yarn store forget it he touches EVERYTHING has to feel everything, he acts like a 2 year old but on hyperdrive he flips from one thing to the next..
I'm just so overwhelmed right now i don't know what to think his therapist pointed out the obvious and had me do this questionarre and its amazing how many questions I said yes to.
What do the OT's do for therapy? TIAWelcome! He sound like e, he is a seekerTake it minute by minute once you learn the toolsw you will be amazed at how amazing they are!

Hi everyone. I've always "thought" that my son has SID due to a number of things. He started head banging at around 7 months of age and just recently stopped this (almost 4). He rocks repeatedly. He "W" sits. He can't stand to have his teeth or hair brushed or his fingernails cut. He won't have anything to do with any type of water activity (other than baths). When he is upset he'll repeat the same thing over and over and over while he rocks and bangs the back of his head on the couch. I think those are the only strange things that he does. Other than that he is extremely handsome, protective, smart,funny and sweet. He always tells me that he loves me. Anyway, just wanted to get your take on this and see if any of this sounds familiar to any of you.
I would have him tested, he might have sid and or a highyll functional autism. Let us know!:goodvibes:

[TieNappyQueen]

Oh and a video of e for your veiwing pleasure! This is what he calls spiderboy!
http://i175.photobucket.com/albums/w158/Namaste0427/videos/th_MVI_2432.jpg (http://s175.photobucket.com/albums/w158/Namaste0427/videos/?action=view&current=MVI_2432.flv)

[LisaV]

Love the video. How is everyone doing?

So we got some of the test results back. He has delays in fine motor skills, and balance. There is a few more areas but we havn't formally met with the OT yet. This is what is in the report they sent home. DS will also be doing auditory intergration therapy, working on crossing the planes in his body. Apperently with the way he is going he would have difficulty picking out a dominate side such as for handwriting, cutting, etc in fine motor skills.

I am so glad we can go forward from here. I have also been advised prior to school to have an IQ test done and a consult with a pediatric nureurol physcologist? Has anyone else had this suggested yet?

[TieNappyQueen]

I know what you mean, it is so freeing! Hope to hear some more good news.

[jesshb]

Hey mamas! Just saw this thread. I'm in the process of arranging for my dd to be evaluated for SID with an OT. I read Carol Kranowitz's book The Out of Sync Child (on the recommendation of an OT) and it was very informative and helpful.

My dd is a combo of sensory avoiding/seeking....mostly avoiding though. Very sensitive to sounds, sensitive to certain clothing, HARD time doing transitions, elimination problems, and some self stim.

But like many mamas here mentioned, is smart as a whip and she was our only for so long that we didn't put 2 and 2 together or at least really take a hard look at it until our ds came along.

Glad you all started this thread. I'll give an update when I have one about my experience with the OT eval. :hugs:

[iris0110]

Love the video. How is everyone doing?

So we got some of the test results back. He has delays in fine motor skills, and balance. There is a few more areas but we havn't formally met with the OT yet. This is what is in the report they sent home. DS will also be doing auditory intergration therapy, working on crossing the planes in his body. Apperently with the way he is going he would have difficulty picking out a dominate side such as for handwriting, cutting, etc in fine motor skills.

I am so glad we can go forward from here. I have also been advised prior to school to have an IQ test done and a consult with a pediatric nureurol physcologist? Has anyone else had this suggested yet?



Kearnan had an IQ test done. Scary thing is he turned out to be a genius. The school psycologist suggested it. I think he was trying to convince me that we needed the school, but he was a bit taken aback by the results. It's actually a bit intimidating to be honest. Our pedi neurologist suggested either the developmental pedi, or the pediatric developmenta nuero psycologist. It turned out the psycologist didn't think she could help us and didn't have an opening for almos 6 months for evaluation (not to mention the closest one was 2hours away and requires 2 seperate evals). So we went with the developmental pedi. Personally I was unimpressed, but it did get us the diagnosis we needed to get alot of the services Kearan needs. But Kearnan has the PDD NOS diagnosis too, he's not just SID/SPD so I don't know what they might be looking for, or if that might be it.

[LisaV]

Just checking in? How is everyone doing?

[TieNappyQueen]

sickies here! We had a BUSy Sunday and paid for it for three days after. After church we went STRAIGHT to a bday party in which he remained in meltdown mode the whole time even with all the tricks. Then we had a kcikball game for two hours and he LOVED it but that night and the days after were HELL!
We found out that we can buy the church service on dvd and there was one about a month ago with e that is PRICELESS. If we get it I will try and post it. I am blessed that our church understands e's issues so well! LEts just say that a sensory seeking nut can not be put in the front of the church to perform some songs and then told to sit and watch a slideshow set to those songs. He was a trainwreck to say the least!

[mommacubed]

Hey mamas! Just saw this thread. I'm in the process of arranging for my dd to be evaluated for SID with an OT. I read Carol Kranowitz's book The Out of Sync Child (on the recommendation of an OT) and it was very informative and helpful.

My dd is a combo of sensory avoiding/seeking....mostly avoiding though. Very sensitive to sounds, sensitive to certain clothing, HARD time doing transitions, elimination problems, and some self stim.

But like many mamas here mentioned, is smart as a whip and she was our only for so long that we didn't put 2 and 2 together or at least really take a hard look at it until our ds came along.

Glad you all started this thread. I'll give an update when I have one about my experience with the OT eval. :hugs:

what types of sounds and clothing is she sensitive to?

[LisaEileen]

I NEED one of these swings! Victoria climbs in my Grandson's baby swing all the time. I gave up trying to keep her out of it, but it's kind of scary because it's not exactly built for a 28 pound 3 year old. I know my dh would throw a big fit about hanging something like that though. It sure would make my life a lot easier. Can something like that be ordered somewhere? Is there ever a case where a therapist can order equipment like that or a weighted vest and get it covered by insurance? We have Medicaid.

honey i wish you were here we could sooo relate. I am looking for a support group for this here because this is really wieghing on me. We got this swing from ikea almost a year ago and keep it in his room
http://i175.photobucket.com/albums/w158/Namaste0427/IMG_0784.jpg
total life saver he calms down when you get it on super spin.
Plus we take ALOT of showers bring shim down and fulfills alot for him i think
I am also looking into equine therapy for him.

[iris0110]

I NEED one of these swings! Victoria climbs in my Grandson's baby swing all the time. I gave up trying to keep her out of it, but it's kind of scary because it's not exactly built for a 28 pound 3 year old. I know my dh would throw a big fit about hanging something like that though. It sure would make my life a lot easier. Can something like that be ordered somewhere? Is there ever a case where a therapist can order equipment like that or a weighted vest and get it covered by insurance? We have Medicaid.

You should be able to order it from ikea's website just google ikea. The catch is having somewhere to hang it. I have an old baby hammock (like amby but not that brand) that Kearnan loves. Unfortunately it only goes to 40lbs and he is about there. I want to get one of those chairs, but we don't have anywhere to put one. Ikea also has a chair that they call the pod chair or something, it is round and it has a hood that can pull down and close all the way, and it spins. Lots of SID kids love those too. In fact ikea just has a bunch of really great furniture and toys for SID/SPD and ASD kids. We're really lucky and there is one near us that we can go shop at.

[TieNappyQueen]

I NEED one of these swings! Victoria climbs in my Grandson's baby swing all the time. I gave up trying to keep her out of it, but it's kind of scary because it's not exactly built for a 28 pound 3 year old. I know my dh would throw a big fit about hanging something like that though. It sure would make my life a lot easier. Can something like that be ordered somewhere? Is there ever a case where a therapist can order equipment like that or a weighted vest and get it covered by insurance? We have Medicaid.

You should be able to order it from ikea's website just google ikea. The catch is having somewhere to hang it. I have an old baby hammock (like amby but not that brand) that Kearnan loves. Unfortunately it only goes to 40lbs and he is about there. I want to get one of those chairs, but we don't have anywhere to put one. Ikea also has a chair that they call the pod chair or something, it is round and it has a hood that can pull down and close all the way, and it spins. Lots of SID kids love those too. In fact ikea just has a bunch of really great furniture and toys for SID/SPD and ASD kids. We're really lucky and there is one near us that we can go shop at.
yep LOVE the ikea, it was 20 bucks! I though dh would flip but he knew that it would SAVE us and it does! I miss having two within 45 min ( we were in germany and going back in the spring it looks like!!:lostit: :lostit: ) but when I go home to atlanta it is the FIRST place we go, since we have to go through down town to get home we stop ( it is about 8 hours) and let him go straight to the kid area which is by the food and let him get it out before going back home. LOVE it! They do have great sensory stuff and VERY reasonable! I have something I made for e that is saving us when we are out and it made bedtime EASY! If interested pm me because I am going to try and sell them in the next few monthes and I don't want the idea taken ya know.

[pillywiggins]

I just saw this and thought I should post. I have twins that are 21 months old. One has SID and speech apraxia (so far).I knew there was something wrong when she was a couple weeks old. Renny didn't nurse well. She couldn't coordinate suck and swallow and would aspirate constantly. The milestones of seeing the first smile, laugh, tickle was extremely behind. Actually she has just starting laughing about 6 months ago. Finally got the ped to listen to me when she was 14 months old and had her evaluated with a cookie swallow. She doesn't have any oral sensory so she doesn't clear her food/liquid when she swallows. As she gets older, I see more and more things that just aren't quite right. Renny is only interested in books, dvds, and coloring. Toys aren't a big deal for her. She has to have only ONE bowl on the table (sis's have one too). She'll dump them into one.

We are with Early Intervention and has been the past 5 months. We just went to our Ped to discuss some issues (discipline) and see where we can go from here. Renny is getting speech therapy now once a week. Our OT that came out to do the eval said we were doing what we could and she'd check back in 3 months. I'm not real thrilled about that since we are running into issues now as she is getting older. I NEVER have had to swat or smack a hand with my other girls (don't believe in spanking) but I've had to with Renny and she laughs and hits me back. It's like she doesn't understand she's in trouble. She will also bite herself and not feel it as well as fall or hurt herself and not cry.

Renny is on the go constantly, never relaxing, never taking a break. The only way to get her settled down is to firmly rub her hand, feet or legs.

Nice to meet you all!!! I'm so happy to find other mama's like me

[meowmixx3]

the only bummer with Ikea is you can only order some stuff on the website not everything...but I LOVE THAT PLACE and the meatballs...

[LisaEileen]

Stephanie, my Victoria sounds like your dd. She never sits still and she goes from place to place making a mess or breaking something. I can't keep up with her some days. She just doesn't care if we say no or swat. I admit to putting her to bed some nights and having a good cry because I'm so burnt out. Summer is great because we can go outside and let her run until she crashes. I'm dreading winter.

[LisaV]

Welcome Stephanie,
Know that you are not alone and when you need someone just come here and talk to us. Have you done any reading yet or research for DD. There have been some books mentioned on here from previous posts. (Sorry don't have exactly where). Also there have been many suggestions deep pressure which sounds like your DD uses to help relax.

Just got home from the lake today and DS is exhausted along with mom :giggle2: . I finally have some quiet time to my self yeah!

Hope everyone has a good rest of their weekend.

[TieNappyQueen]

the only bummer with Ikea is you can only order some stuff on the website not everything...but I LOVE THAT PLACE and the meatballs...

:drif: :drif: with that berry soda stuff!

[meowmixx3]

:drif: :drif: with that berry soda stuff!


oh the lingonberry juice? you can buy that in concentrate there..I cried when they discontinued the lingonberry mousse pie thing (i was 2 months pregnant but still) I LOVE THAT STORE!!

[pillywiggins]

Thanks for the welcome! I do have the Out of Sync Child. Reading that is what has pushed me more in getting the right diagnosis for her. She lags behind is so many things but is very intelligent too. Our oldest DD is going to be three in couple weeks and is PT'ing. Well, Renny is too now. Yeah, she's sat on the potty after her sister but we've never even tried with her..goodness, she's only 21 months. Well, she's now tugging at us (can't really talk yet) and dragging us to the bathroom and rips her dipe off. We sit her on and she goes. She's also learning things quickly, more than her sisters are. It's just amazing sometimes.
I'm so happy that it's summer and she can get outside and run. Today she sat in the sandbox for over an hour, content with being by herself. We tried to get her to interact with the sis's but she didn't want to.

[TieNappyQueen]

Steph she might have what e has that they call splinter skills. He can do things WAY WAY WAY ahead of 'normal' but when you ask him to do the same action in a more age or devolpmental approiriate way he gets mad and can't do it. Like he can't tell you his numbers or colors but he can tell you which rockets are from apollo, mercury and gemini. Or all the astronauts that have been to the moon. He has it with speech to. He didn't really start to talk until the past 6 monthes or so and it is still hard to understand if you don't know him. He can to the best of his ability say these huge words ( space station, venus, all the planets, and stuff like that but he can't say DAD right :headscratch:

[MamaOf3Cuties]

As a mama to a child with autism spectrum disorder all I can say is :hugs: Therapy does help a lot, and if you continue to do the therapy when the therapist isn't around it will get better and better. :bighug:

[meowmixx3]

i've been thinking has anyone tried a sit n' spin? do they even sell those anymore?

[TieNappyQueen]

i've been thinking has anyone tried a sit n' spin? do they even sell those anymore?

:giggle: I don''t know if they still make them i or not! It is funny you say that because we saw one at a garage sale this weekend and e LOVED it!! I didn't get it though because it was NASTY!:yuck:

[LisaEileen]

When our EI OT therapist was coming awhile back, she had a sit and spin thing, but it wasn't a sit and spin brand. I should call her and ask her what that thing was called. Victoria loved that thing too. She also loved these plastic bubble things the OT put on the floor and she had to walk and jump on them.

[pillywiggins]

I saw one on Craigslist yesterday and commented to my DH that it would be perfect for Renny. They used to carry them at toysrus last x-mas. I think they are just called something else. Our OT said to get a trampoline too and she LOVES it!!

I was reading about the splinter skills and her PTing made perfect sense. It's just amazing. I'm really curious to see what her vocab is when she can actually get control of her tongue. It's so wide and protrudes a little that it's really hard for her to pronounce words. It's getting better though.

[iris0110]

As far as I know they still sell the sit n spins, not sure if they use the same name though. I won't get one for Kearnan because of his vestibular issues. I don't like to do things that encourage him to vomit on us. :yuck: He doesn't like them anyway, probably for just that reason. We do have one of the mini trampolines like you use for exercise routines and Kearnan really likes it. He also likes those giant exercise balls.

[LisaV]

Garret also loves the exercise ball we have. It will sit on it and try to bounce or roll back and forth on his stomach. He also loves the egg shaped spinners at the children's center.

[meowmixx3]

i got a sit n spin today and boy am i PO'd!!! they suck! they are oval and don't even SPIN!!! I am so disappointed I have to find one like back in the day..

[TieNappyQueen]

OH NO!! I am sorry mama, ebay or garage sales is all I can say, oh and thrift stores.

[mbillitto]

Is it too late to join this thread? My son is 3 1/2 and was diagnosed with SPD at around 18 months. He is sensory seeking with some vestibular issues. He had speech therapy until he turned 3 and graduated. His speech is pretty much on target now. We also had OT for his sensory issues, but the therapist was only versed in SPD a little bit so he kinda outgrew what she could do for him. He does attend preschool where it really seems to help. His social/emotional still needs to catch up, so I find lately he is getting more and more frustrated and is "acting up". I have read The Out Of Sync Child, but found Raising a Sensory Smart Child to be a better read. We also do many activities from Out of Sync Child has fun and have found many very helpful. My son loves sit and spin, and also trampolines and balance balls. We also make sure to let him do as much physical activity as possible. I am hoping to get to know other moms here with kiddos dx with SPD, as I am pretty much on my own in the world. I am saddened by how many people don't believe this even exists.

[TieNappyQueen]

You sound like us!!! Welcome! It is great to throw ideas around here and get support! We have no supports where I live here so this is great for me!

[nrae74]

Is it too late to join this thread? My son is 3 1/2 and was diagnosed with SPD at around 18 months. He is sensory seeking with some vestibular issues. He had speech therapy until he turned 3 and graduated. His speech is pretty much on target now. We also had OT for his sensory issues, but the therapist was only versed in SPD a little bit so he kinda outgrew what she could do for him. He does attend preschool where it really seems to help. His social/emotional still needs to catch up, so I find lately he is getting more and more frustrated and is "acting up". I have read The Out Of Sync Child, but found Raising a Sensory Smart Child to be a better read. We also do many activities from Out of Sync Child has fun and have found many very helpful. My son loves sit and spin, and also trampolines and balance balls. We also make sure to let him do as much physical activity as possible. I am hoping to get to know other moms here with kiddos dx with SPD, as I am pretty much on my own in the world. I am saddened by how many people don't believe this even exists.

Do you mind me asking how you got a diagnosis so early and by whom?? I am going around and around with ds's doctors and therapists. The doctor says the therapist would diagnose, and the therapist says that is beyond their scope of training. :headscratch: DS was evaluated at 18 months for clumssiness and fine motor delays, Child find said he had delays but was not serious enough to qualify through them so we went through our own insurance. Now our own insurance wont pay because they only pay for delays in fine motor and gross motor skills, which ds is doing much better in those areas. No one mentioned the SPD until things became more apparent when he got older. Now he is 3 and going back for evaluation and mommy is going crazy:cry: He had been in OT for the last year and a half untill he met the goals his therapist could set(fine motor, gross motor) So she did what she could treating sensory stuff as she could but she had to graduate him. It has been about 2 months and the whole family is going nuts! We have a home program consisting of brushing, heavy work, I have a net swing, and a trapeze bar, Nothing is ever enough:banghead:

[TieNappyQueen]

It is so frustrating!! It is annoying that SPD is not given the respect it needs from insurance:banghead: Do you mind me asking how you got a diagnosis so early and by whom?? I am going around and around with ds's doctors and therapists. The doctor says the therapist would diagnose, and the therapist says that is beyond their scope of training. :headscratch: DS was evaluated at 18 months for clumssiness and fine motor delays, Child find said he had delays but was not serious enough to qualify through them so we went through our own insurance. Now our own insurance wont pay because they only pay for delays in fine motor and gross motor skills, which ds is doing much better in those areas. No one mentioned the SPD until things became more apparent when he got older. Now he is 3 and going back for evaluation and mommy is going crazy:cry: He had been in OT for the last year and a half untill he met the goals his therapist could set(fine motor, gross motor) So she did what she could treating sensory stuff as she could but she had to graduate him. It has been about 2 months and the whole family is going nuts! We have a home program consisting of brushing, heavy work, I have a net swing, and a trapeze bar, Nothing is ever enough:banghead:

[mbillitto]

Nichole, No problem. It wasn't easy. Actually it was MONTHS of going round and round with people. I first had Andrew to a Speech therapist because he was speech delayed. After a month of therapy, and the inability to really settle down, she observed his behavior and along with things I was telling her, suggested the SPD. I had NO idea what that even was, but decided to just research the heck out of it. She told me to see a behavioral pediatrician and to schedule an evaluation with an OT. In the meantime, I also heard of an Early Intervention program where they came and evaluated him too. Since he was speech delayed, he DID qualify for services, however we were already getting him ST, so they moved on to his next problem, which was SPD. Since behavior issues (and sensory seeking) was his MAIN area of SPD, they sent a behavioral therapist to the house. She actually was the first official person to dx him with SPD. In the meantime, the behavioral pediatrician (NOT to be confused with the Behavioral therapist) told me SPD didn't exist and Andrew was just "bad" and that time outs with my arms wrapped around him would fix it. Come to find that any type of binding sets Andrew off even worse, but that is another story. Anyway, it took 2 months to get my OT eval and she also diagnosed him with SPD. However, her SPD experience was limited so we were only able to see her for a few months. But she did do "brushing" with Andrew which really seemed to help him focus. Now here in Florida, the child can be in Early Intervention until Age 3 and then they must move on or be referred to the school system. The school system does NOT recognize SPD as a delay so once he was 3, he didn't qualify for services since his speech was on target. So, Andrew was able to get therapy for OT and BT thru the EI program until age 3. He qualified for OT only because some of his fine motor skills weren't exactly on track. They would NOT qualify him for SPD. My insurance paid NOTHING for OT. They did pick up speech, but not anything related to "SPD". The cost of those things was billed to the EI, which was free for me. I was also blessed enough to have a neighbor with an autistic child who received some sort of grant from the county for delayed children. They actually have a preschool in my county for delayed children so I was able to get andrew in. that helped tremendously. But again, once he hit 3, he was on his own.
Are you lost yet? LOL! The entire journey of actually being able to get the help took a few months after he was "officially" diagnosed. And again, it was all thru county programs because my insurance wouldn't recognize it at all. (I dare them to live a day in our house and tell me it doesn't exist!) But he was able to receive free therapy until he was 3 and I can't say enough about the programs from Early Intervention in my area.

I will tell you that Andrew needs SOO much stimulation. And he is the "problem" child at school. I mean he isn't "Bad" enough to qualify for special PS, yet he is too "bad" for regular preschool. Actually, I take that back, the teacher told me he is high maintenance and she is worried next year when his preschool class will consist of 15 kids. She said the next teacher may not be as tolerant. Gee, THANKS. And he has MANY behavior issues related to his SPD. But like you Nichole, nothing is ever enough for him. We too live in a house that not many people can understand. It is always loud (Andrew doesn't have an inside voice) and busy (OMG the messes....) and he can turn on a dime and just explode with frustrations. In all those evals though, the only thing we can be sure of is that he isn't autistic and he doesn't have mental disorders that they know of.
At home, doing sensory activities is really the only way I stay semi-sane, and even that is pushing it many days!

[pillywiggins]

I just wanted to pop on and tell ya all we got an appt for Renny at the University of Iowa Children's Hospital. Our Pedi said she didn't think renny was Autistic but she might be on the spectrum somewhere. We go Sept 11th, for a full eval with a behavioral Pedi, OT, BT, ST. We already know that her speech is behind and has sensory seeking behaviors so hopefully we can get a "diagnosis" from them. I don't think EI has put SPD on her records yet, but treating it as such.

The other place we could have went to had appts 12 months out. yeah, it was in network, but out of network is fine with us to get her properly diagnosed. Is there any questions or things I should have ready before I go?

Michelle, I didn't know SPD won't let Renny be qualified after 3. Right now she is delayed in developmental and speech. I'm hoping that she won't be in a year but wow, we don't even have insurance coverage for speech outside EI.

[LisaV]

keep us posted on how the testing goes. EI is called birth to 3 here in WI also and only goes until age 3 and then it is up to the school district. Since garret was only listed as muscular incoordination they may not take him. Our school district requires 2 delays unless it is speech, but we will do their testing in the fall just to make sure.

Make sure you check out other OT's if you don't have insurance because some will work on adjusting their prices if that is the case. We get 20 visits a year so I am starting to feel fortunate. After 20 we are 100% on our own. I do have an OT that worked with Gman during birth to 3 and they are willing to adjust pricing after we have hit the 20 visits.

Well on a side note how has everybody been? Gman has learned to ride a two wheel bike (3 1/2). I don't know if this is early or not but I am very impressed. He started one day with me helping stabalize and the second day I helped once and then he wouldn't let me and he started on his own. It has been a week and he is an old pro already. OH yeah no grass learning for him like his dear old mom did.:giggle2:

[LisaEileen]

I posted on a different thread, but Victoria has an appt with a Child Psych on Aug 8th. That's who our family doctor referred us to. They had a 9 month waiting list, but because she has been conferring with our family doctor the past few months regarding Victoria, they actually cancelled an appt with someone else to get her in sooner. I'm not sure what this appt is going to do for us. I wonder if she'll just end up sending us down to Madison for a 3 day eval or something? I can't imagine we're going to go for a one hour psych visit and walk out with a diagnosis. Our EI speech therapist was here for the last time yesterday and she was kind of leary about going to see a child psych for this, so she gave me a bunch of other advice to follow up on.

[midominga]

My son is almost 3 with SID he will be starting full time school in nov when he turns 3 so they will help prepare him to interact with other "normal" kids seeing an OT 3X a week. He will also be seeing a PT an speech.

[TieNappyQueen]

keep us posted on how the testing goes. EI is called birth to 3 here in WI also and only goes until age 3 and then it is up to the school district. Since garret was only listed as muscular incoordination they may not take him. Our school district requires 2 delays unless it is speech, but we will do their testing in the fall just to make sure.

Make sure you check out other OT's if you don't have insurance because some will work on adjusting their prices if that is the case. We get 20 visits a year so I am starting to feel fortunate. After 20 we are 100% on our own. I do have an OT that worked with Gman during birth to 3 and they are willing to adjust pricing after we have hit the 20 visits.

Well on a side note how has everybody been? Gman has learned to ride a two wheel bike (3 1/2). I don't know if this is early or not but I am very impressed. He started one day with me helping stabalize and the second day I helped once and then he wouldn't let me and he started on his own. It has been a week and he is an old pro already. OH yeah no grass learning for him like his dear old mom did.:giggle2:

WOW that is early, 5 or six is normal for that! Congrats big man! It amazes me what our kiddos are able to do! He is a keeper I think!:thumbsup:

E has had a rough time with my mom and dad leaving but is slipping back in to 'normal'.

[RetroBaby]

Hey guys, can I join this thread? I haven't read all the replies but the title of the thread caught my eye.

I knew my first son, Tyler, was different when he was a baby and he had an obsession with opening and closing a french door in our house, he would just watch and be mesmorized by it. He was maybe 10-11 months then. At 15 months he started having violent tantrums about clothing. It couldn't have cuffs, everything had to be super soft (no button up pants, no shirts with buttons or collars) and he REFUSED to wear shoes. Any kind of shoes. We would take him places like the zoo or the fair and he would spend the whole time melting down crying. Sleep was always a hassle. His room had to be completely dark and absolutely no noise. If there was a dog barking or lawn mower outside it was the end of his nap. He also became obsessed with things like ceiling fans, sprinklers, vaccuums. We had to change his crib sheet right before he went to bed at night because if he saw the new patterned sheet he would stay awake and cry about it.

He didn't say a single word until he was 2 and he didn't potty train until he was 5. At about age 4 we took him to the ped because he was continuously waking up at night crying and we didn't know why. The ped said that he probably has SID and referred us to the developmental pediatrician. The developmental ped evaluated him and declared him about a year and 1/2 behind in cognitive development. But she basically told me that SID "doesn't exist" :headscratch: She said "Well, if I have a tag on my shirt, it could bug me". :\ I was like "Uh no. That doesn't even begin to cover it" but she brushed me off. There's no such thing as SID. She didn't give us any help for his lagging development either.

So when he was 5, turning 6 he started kindergarten. He did okay but his teacher mentioned that he was obsessing about things like the ceiling fan, carpet and noises from the heater. First grade was a disaster! He is soooo behind and is almost 8 now and can't really read. Math? Forget about it. He just doesn't understand.

Honestly what I've typed here isn't even the tip of the iceburg for Tyler. He's just sooooo different from the average child and we haven't had any sort of therapy or help for him. His teacher did mention an IEP for him for second grade but that's about it.

ETA: I forgot to mention his obsessive routines! Too many to mention. But we must do the routines!

[TieNappyQueen]

Oh hon I know how you feel!! WELCOME! I love this thread because it makes me feel more 'normal'. People who are unfamilar with this think there is nothing wrong with him that I am being willy because he is my first blah blah blah. Just because he doens't look 'off' doesn't mean he isn't. I think that is the hardest thing about this disorder is that they look 'normal' but they are not.

[LisaV]

Welcome! We love to find new mama's to share stories, struggles, smiles, and advice.

[LisaEileen]

You know what's frustrating? I've told a few people about Victori'a appt on the 8th. We'll start talking about why she's going. I'll mention things like how she head bangs, swings, rocks, is extremely speech delayed, one day seems to understand everything and the next day seems to understand nothing, loves very rough touch, etc. etc, etc,. I'm getting tired of hearing she's fine! Some kids don't talk until they're 3. She probably does understand you, she's just not listening...all kids are like that. Of course, she likes to rock and swing, she's a kid. Some kids like to rough house.

If anyone lived with Victoria for a day or two, they would get it. I have 3 other children. I think I know what children are like. Victoria is not "normal"! She's not going to grow out of it. I'm tired of hearing I'm worrying over nothing.

I just had to vent. I'm frustrated.

[TieNappyQueen]

YES I know excatly what you mean!! Oh he is just spirited, a boy, a toddler, tired, overstimulated, not understood, not parented right...blah blah blah. I say the same thing, YOUtry living with him for a week, hell a day or a few hours!

[jesshb]

You know what's frustrating? I've told a few people about Victori'a appt on the 8th. We'll start talking about why she's going. I'll mention things like how she head bangs, swings, rocks, is extremely speech delayed, one day seems to understand everything and the next day seems to understand nothing, loves very rough touch, etc. etc, etc,. I'm getting tired of hearing she's fine! Some kids don't talk until they're 3. She probably does understand you, she's just not listening...all kids are like that. Of course, she likes to rock and swing, she's a kid. Some kids like to rough house.

If anyone lived with Victoria for a day or two, they would get it. I have 3 other children. I think I know what children are like. Victoria is not "normal"! She's not going to grow out of it. I'm tired of hearing I'm worrying over nothing.

I just had to vent. I'm frustrated.

YES I know excatly what you mean!! Oh he is just spirited, a boy, a toddler, tired, overstimulated, not understood, not parented right...blah blah blah. I say the same thing, YOUtry living with him for a week, hell a day or a few hours!

I also want to add that I know what you mean too! I don't know how many times I've heard others that there is nothing to my observations. My dd uses up all her energy "acting within the norm" in public for the most part, but then at home it all hangs out. :hugs: to all the mamas on this thread!

[mbillitto]

YES I know excatly what you mean!! Oh he is just spirited, a boy, a toddler, tired, overstimulated, not understood, not parented right...blah blah blah. I say the same thing, YOUtry living with him for a week, hell a day or a few hours!


OMG that is ME! that is my life! I am so sick of people *thinking* they know what it is like. Thank you for stating it exactly as it is!! I keep saying my Andrew would have many parents curled up in the fetal position by the end of 1 day!!!


As for SPD diagnosis after 3, well in my area of FL you HAVE to have some other sort of delay to get therapy. My son is now caught up on speech (amazing how many SPD kids are Speech delayed!) and his cognitive development so that is why they wouldn't qualify him JUST for SPD, which many developmental peds don't even believe exists. i tell them to live a day in MY life and tell me it doesn't exist!

[pillywiggins]

Why do developmental pedi's not believe in SPD? I think SPD is just as serious as anything else. My DD is sooo rough and just can't "play" with others well.
Yesterday was another day where I noticed odd with Renny. Her sisters are playing with Betty Spagetti dolls, putting the arms/lets in the bodies, etc. Renny is just taking the little beads used as bracelets and putting them in a little bucket OVER AND OVER. When I said it was time for bed and made them put the dolls away, Renny freaked out. Last time I noticed something off she got a hold of a clothes tag plastic piece and was threading it into a bead for about an hour.

[babygirlsmom1005]

My daughter has been seeing a OT since she was 9 months old for SPD, started out just sitting staring at a wall and flapping her arms, she has come a long way and now at almost 3 she is in a program at a sensory place that has her interacting with other children. She is sensory avoiding and has issues with doors (doesn't like to walk through doorways), aswell as many other things. Give her two cups with something in it, she's happy for hours pouring one into the other.

[LisaEileen]

The past few days have been horrible. I have visions of running away. Victoria was actually screaming and tantruming so loud the other day that the neighbor across the street heard her. We both have our houses closed up and the air conditioning on. My dh is so back and forth about everything. Today he once again told me that "of course she's going to act this way, she's almost 3." Our other girls did NOT act this way. I keep mentioning that I want him to come to our appt on the 8th. I think he needs to be involved in all appts from now on so he can get it in his head that this is not normal.

Do any of you ever get a break? I can handle a lot. But, lately I have all I can do to hold my sanity together. I just need a break, but no one will watch Victoria. I don't blame them, but I'm ready to blow a gasket. I love her dearly, but a day without her so I can destress would be very welcoming right now. If you get a break, who watches your little one? I don't trust leaving her with just anyone. I know she can really test peoples patience.

[meowmixx3]

today was AWFUL!!! Jonah was in an awful mood; he hit his therapist. Then at the mall we let him ride on one of those rides and when we told him we had to go he went BALLISTIC!! He had a tantrum for over a half an hour screaming help and everything else..my DH is on leave so he finally sees what I mean..I am about to lose it. WE're still waiting for the referral to the OT. He gets evaluated by the school district soon so I know they'll have a developmental psychologist and OT there but I want the diagnosis NOW I need to learn how to calm him down..I feel like such a failure and a bad mom..Thanks for listening and advice would be greatly appreciated.

Also has anyone tried the gluten-free diet with any luck?

[babygirlsmom1005]

The past few days have been horrible. I have visions of running away. Victoria was actually screaming and tantruming so loud the other day that the neighbor across the street heard her. We both have our houses closed up and the air conditioning on. My dh is so back and forth about everything. Today he once again told me that "of course she's going to act this way, she's almost 3." Our other girls did NOT act this way. I keep mentioning that I want him to come to our appt on the 8th. I think he needs to be involved in all appts from now on so he can get it in his head that this is not normal.

Do any of you ever get a break? I can handle a lot. But, lately I have all I can do to hold my sanity together. I just need a break, but no one will watch Victoria. I don't blame them, but I'm ready to blow a gasket. I love her dearly, but a day without her so I can destress would be very welcoming right now. If you get a break, who watches your little one? I don't trust leaving her with just anyone. I know she can really test peoples patience.

One of the thearpy programs Madeline goes into I get a 2 hour break while she is there 2 times a week. It's a group program with a OT and 2 helpers there for 4-5 kids and it has really done wonders for her aswell.

[LisaV]

:hugs: for all the struggles this week. Hang in there.

I get a break usually when my sister is seeing that I am getting really stressed and she will take Garret for a few hours. Usually it is when he is at his most active sense he is sensory seeking and they will do lots of things outside. This doesn't happen too often since she works full time, goes to school full time, and is a single mom. I will take whatever I get.

We start AIT next week and will be a struggle since we have to go twice a day with 3 hours apart during DD nap times.

Hang in there mamas.

[TieNappyQueen]

The past few days have been horrible. I have visions of running away. Victoria was actually screaming and tantruming so loud the other day that the neighbor across the street heard her. We both have our houses closed up and the air conditioning on. My dh is so back and forth about everything. Today he once again told me that "of course she's going to act this way, she's almost 3." Our other girls did NOT act this way. I keep mentioning that I want him to come to our appt on the 8th. I think he needs to be involved in all appts from now on so he can get it in his head that this is not normal.

Do any of you ever get a break? I can handle a lot. But, lately I have all I can do to hold my sanity together. I just need a break, but no one will watch Victoria. I don't blame them, but I'm ready to blow a gasket. I love her dearly, but a day without her so I can destress would be very welcoming right now. If you get a break, who watches your little one? I don't trust leaving her with just anyone. I know she can really test peoples patience.

Man is there a full moon or something!? It has been hell here too. SO bad that I am looking into a support group or counseling for me:cry:
I hear ya on the no one to watch them situation, no one will here either:cry:

[TieNappyQueen]

today was AWFUL!!! Jonah was in an awful mood; he hit his therapist. Then at the mall we let him ride on one of those rides and when we told him we had to go he went BALLISTIC!! He had a tantrum for over a half an hour screaming help and everything else..my DH is on leave so he finally sees what I mean..I am about to lose it. WE're still waiting for the referral to the OT. He gets evaluated by the school district soon so I know they'll have a developmental psychologist and OT there but I want the diagnosis NOW I need to learn how to calm him down..I feel like such a failure and a bad mom..Thanks for listening and advice would be greatly appreciated.

Also has anyone tried the gluten-free diet with any luck?

This is me today and alot of the days lately:(

[meowmixx3]

i'm so sick of people saying that their kid acts the same way and its a normal 2 yr old thing.."normal" kids don't spin in circles for hours on end or can fly south for winter either..my mom don't get it..i don't want something to be wrong with jonah but i know there is.. :(

[LisaEileen]

I just had my last Early Intervention appt. Victoria will be 3 in a few days so EI will be done. I was trying to get some ideas about whether this appt with the child psych will even be worth it. They didn't think so. They think she should have a full eval done by a team, but the one program that does it cuts off at age 3. The other one has a year waiting list. I told them that I thought an actual diagnosis would get Victoria more help as far as OT. They said the school OT only provides fine motor stuff, not sensory stuff. So, what's the point then? Apparently, that wouldn't change even if she had a diagnosis. I was told that it wouldn't pay to bring her to see a private OT since the real progress she makes would come from me working with her at home. So, then why is everyone so insistent that I send her to school if they don't provide the OT she needs and they think she would make the best progress with the sensory diet I do with her at home? I got the impression that they must think I don't do anything with her at home since she hasn't made a whole lot of progress since they have been working with her this past year. It sounds like the school doesn't recognize sensory issues as being a big enough concern for Victoria to get OT. Apparently the early childhood teacher will give me some limited ideas about what to do and that's it.

I feel like there's all these people around me that have fancy titles after their names that are supposed to be helping me, but the system isn't set up to help. :headscratch: Now I remember why I quit college. I was actually going to college to earn a degree in early childhood special ed. When I got past the 2 years of general studies and they stuck me in some classrooms, that's when I decided I couldn't do this as a career. I loved the kids and the work. But, I hated the politics. The system just doesn't seem like it's fully set up to help the individual child. Hopefully I'm not ticking off any teachers here. :) This has just been my personal observance. I'm sure it differs from district to district.

Yesterday I felt really lost and alone in this craziness. Today I feel worse. It all feels pretty pointless really. I'm going to take her to this appt on Friday. If nothing really comes of it, I'll do what I was doing before my doctor convinced me to get early intervention involved...I'll work with her at home the way I see fit.

[LisaV]

:hugs: Hang in there mamas. As for continuing OT I would still do it so that you have a base with your insurance or anyone else that may be involved. We did the same with Garret when he turned 3 and he was doing well but then started to regress so we went to a play therapist that suggested going to the children's center to get a diagnosis. If anything it is a short break for you because you now that he is in good hands and you can take a breather for a few minutes.

I understand about the "normal" child thing. I am so glad that our family doctor is very supportive and when I talk with her that she is more than willing to do the recommendations to get the treatment he needs. I hope the week starts to get better for all of you.

[mbillitto]

Andrew was done with EI at 3 too. that is why now in regular preschool, he is having issues. I actually had A NEW organization call me to evaluate him, called by the school. They also send in a develomental screener. I can only hope they actually can do services for SPD. Otherwise, what are the options? I am told he isn't severe enough to be considered a behavioral issue, but obviously he isn't "normal" enough to be fine in preschool. My DH goes back and forth on stuff too. one moment he thinks something is wrong and the next "Oh he is 3 what do you expect". Well I expect him NOT to bite his friends. I expect him NOT to scream at the top of his lungs when he gets mad. And somehow he has learned the word "kill" (he did NOT hear it at home) and told the child that pushed him he was going to kill him. He doesn't even know what it means, but for some reason says it when he is angry and of course now they are concerned.
Oh and I can't get anyone to watch Andrew either. I am just taking it day by day and praying a lot. And hoping I am finally lead to someone who can help me.
In the meantime, it is nice to know so many others are dealing with the frustrations I am. I don't like it for any of us. but somehow knowing I am not alone makes it more bearable for ME. KWIM?

[TieNappyQueen]

i'm so sick of people saying that their kid acts the same way and its a normal 2 yr old thing.."normal" kids don't spin in circles for hours on end or can fly south for winter either..my mom don't get it..i don't want something to be wrong with jonah but i know there is.. :(

yep I know. E is a spinner to. I got the swing in his room, I have it posted in this thread, and it SAVED us!Only 20 bucks at ikea!

[pillywiggins]

yep I know. E is a spinner to. I got the swing in his room, I have it posted in this thread, and it SAVED us!Only 20 bucks at ikea!

A few days ago when I was searching for one online, Ikea didn't have any in stock. I've been dying to get one for Renny, even thought about trying to make one myself. It would be a lifesaver here.

I'm sorry everyone is having a bad week. :hugs: Ours has been pretty decent but my parents took a twin and our oldest for a couple days. I was able to spend more one on one time with Renny. I'm seeing more little quirks and obsessions since I had a couple days alone with her. She is loves to dance and dance. If I put on the wiggles cd, she'd dance all day if she could.:giggle:

[TieNappyQueen]

ohyou can't get them online, only instore. I think one of the moms here is goning soon...

[LisaV]

If you don't have a store near you let me know. I live around 30mins from one near the mall of America. I would be happy to go and check it out for you. You can pm me if needed.

[pillywiggins]

Lisa, I would love if you could get one for me. Our closest is 3 hours away.

[LisaV]

Okay. If anyone is interested I am going to run to IKEA on Monday to purchase one of these for myself and another mama. (Picture borrowed from TieNappyQueen Hope you don't mind). The price is $19.99 and then it would be actual shipping to you. If you are interested please LMK before monday so I can make a list. I do know they have some instock. I will try calling again to find out how many and see if they come with the hooks. Other wise the hooks on their online store say $1.99 for two. I will also see if I can get a weight so we can figure out shipping costs. I am leaving Friday morning to go camping so when I get home sunday I will respond to who I have on a list if anyone else wanted one.
http://i175.photobucket.com/albums/w158/Namaste0427/IMG_0784.jpg

[TieNappyQueen]

:giggle:
They are sooo worth it and the hooks are awesome! You couldn't find any half that good for anywhere near that price anywhere else! Wish I could go, i will when I go home in the fall!
Here he is right after he saw that pic on the screen! He loves to do this after it is done spinning!
http://i175.photobucket.com/albums/w158/Namaste0427/IMG_2699.jpg

[LisaV]

Okay I have the final prices:
Hammock: $19.99 comes with all hooks 2lbs 12 oz for shipping purposes
Seat for inside hammock: $10.00 2lbs 2oz.

So total would be $29.99
Total weight 4lbs 14oz (please take into factor for boxing cause I'm sure they didn't but this should give you a good estimate.)

They have currently over 10 in so as long as they don't sell out before Monday.

If you decide to order and the seats come in a girly or boy print please lmk what you would prefer. Thank you.

[TieNappyQueen]

you are so awesome to go do this! Wish I could help out as well.
You could wrap the box they come in in paper bags so that it might be cheaper...

[pillywiggins]

How is everyone doing? Lisa got me the chair/hammock and we are setting it up this week.
I also scored two Sit n Spins at garage sales this weekend. Total spent $5. Renny is LOVING it!!!

[iris0110]

I need some help from mamas with sensory kids in school settings. Kearnan will be starting at a charter school at the end of this week. I've discussed with his teacher his needs and told her that he can get over stimulated, but I'm not sure the best way to explain it. Also is there anything that your kiddos teachers do that really seems to help? Kearnan will be in a normal classroom, it remains to be seen if he will have an aide or not, we won't know till after his eval. I was trying to come up with things that could be done to help him. Is there any device that calms your child, weighted blanket ect? I know all sensory kids are different, but I'm trying to think of somewhere to start. Kearnan can get over stimulated easily and escalates quickly. I would like to set him up to succeed if at all possible.

[LisaV]

My son is not in school yet but one of the things that works for him is anything for his mouth. He is very oral in that a sucker or gum helps to with some of the over stimulation. I have thought about a weighted blanket because at night he wants lots of covers and sometimes it is just too hot. Good luck and keep us posted on how it is going.

[TieNappyQueen]

YEAH for the swing!
Shannon, I made cheery pit pillows for e and they are a HUGE hit here, you can heat them in the mircowave and they stay warm awhile or keep it in the freezer. Plus he loves the clinks that they make and how they flow back and forth and the whole thing of it. Some are wool, some are cotton. I am making a bunch to sell her ( so shhhh I don't want my idea stolen :banghead: ) they are awesome for him.

[xelasminin]

Its been a long time since I have been here! I've been really busy. My small update is, I took Hunter out of his PT. We live in such a small area, that I think people that he saw just weren't "getting" it. All they did was play with putty and put puzzles together and we do that at home! I think we can get a lot more done at home with him. He's so much better than he used to be, like 90% better so I was ok with it. So far everything is stable for him, we just keep doing little things with him like our in home therepist used to do (that guy rocked!)

so there's our update!

[TieNappyQueen]

Well knowing what needs to be done at home is the most important thing, three hours a week is a drop in the bucket to whast you have to do all the time.

[iris0110]

Where did you get the cherry pits? I shopped all over for them to make a toy for a friend's son and couldn't find them. I could definately make a weighted pillow with them, that would be great.

I also found this
http://shop.happymothers.com/Cloud%20b/Night%20Lights%20&%20Lamps/shop/prd_CB7343_Cloud%20b_Cuddle%20Cub.html?ref=froogle&utm_source=froogle&utm_medium=shopengfree&utm_term=Cloud%20b&utm_content=Night%20Lights%20&%20Lamps&utm_campaign=CB7343

It's made with memory foam and a little heart that vibrates or beats when you squeeze it. When Kearnan gets stressed he likes to squeeze something really hard. Unfortunately that is often his brother's head. Of course that is usually because Tharen was the one that caused the over stimulation. He's a very loud and active child. They feed off of each other alot. But I thought it might help to have the bear to sqeeze instead, especially at school.

So far he is doing really well in school. He did so well that he wound up staying for a full day instead of doing half days like we had kind of planned for the first week. He's got a couple of friends who are helping him out. They make sure he focus doesn't wander so far that he gets lost on the way back from lunch or anything. This morning at drop off he spotted his new friend and totally abandoned me. I'm doing ok, but Tharen took it hard. We stood over to the side and watched till the teachers called them all back to the classrooms. Kearnan sat with a couple of friends up against the wall with the rest of the class and one other class around them. And when it was time to go to the room his buddy got up and went and when Kearnan didn't follow he peaked back around the corner and called "hey Kearnan come on" and off they went. Didn't need me at all. Tharen on the other hand has spent the last few days driving me insane. Without his brother to play with he is pestering the dogs and climbing all over me. And every 20 minutes or so he asks where Kearnan is or if we can go get Kearnan. He was really put out today when he realized Kearnan was more interested in his friends than him. Kearnan will be getting 30minutes a week of OT and ST from the school until we have a more permanent IEP in place. He needs a new eval, he hasn't had one since he was 3. He's in K for now, not challenging him academically but it is really helping him socially since he has so many social delays. Also with his disgraphia any chance to work on writing is good. Because it is a small charter school he only has 13 kids in his class, and thy practice an at your own pace learning, so he can move up anytime. We will discuss it at the ard following his eval to decide where to go from here. We all know he isn't getting challenged academically, but I can still do that at home. He is challenged enough with the new sensory input and the social stuff that he isn't bored or anything.

[LisaV]

Okay I got lost somewhere. What was it that you were mentioned about a weighted pillow? I have been thinking about a weighted blanket for garret because he has to have so many layers on at night.

Second. How does a charter school compare to a montesorri?

Hope everyone is doing fine. We finished with AIT and this week has been an uphill climb. We are going to the state fair on Sunday so that should be fun.

[iris0110]

Okay I got lost somewhere. What was it that you were mentioned about a weighted pillow? I have been thinking about a weighted blanket for garret because he has to have so many layers on at night.

Second. How does a charter school compare to a montesorri?

Hope everyone is doing fine. We finished with AIT and this week has been an uphill climb. We are going to the state fair on Sunday so that should be fun.

Tienappyqueen was talking about how she made pillows with cherry pits to give them weight and because they can be heated or cooled.

I can't really say for sure, we've never done montesorri. All Charter schools are different. The nice thing is that most of them are small, and they are public schools, so they are still free. They are also some what free of the school districts policies, operating under the broader state laws. So for Kearnan that means he can be mainstreamed in a classroom where our local school district places all ASD children in self contained Special ED rooms. They do not mainstream at all. In this school he is in a normal classroom and has the abillity to move as needed. They are quick to work with us on his needs, and they will provide whatever he needs as per state requirements. So if the eval comes back with him needing a one on one aid, they get the aid. They provide necessary therapy, and anything else he needs. Though he is doing very well right now with very little intervention at all. The benefit to the aid and assitive technology would be that it would allow them to better discern his actual academic level, because he can't be tested like most kids, he doesn't perform well at all. So they would be able to get a more appropriate academic placement for him. The draw back is that they can be hard to find and alot of them have really long waiting lists. This one only has one class per grade level, and only takes 19-20 kids per class in 4th and under and up to 25 in the higher level class rooms. So you have to register early and hope to get a spot. Luckily this one is a new campus so no one really knows about it. That's why Kearnan's class is so small. However their 1st grade is full with a waiting list, so are 2nd and 3rd. Some of the charter schools specialize in things like art or drama or science ect, those are usually more high school level.

[TieNappyQueen]

I got a big ol bag of them from a german online shop. I am making them to sell and donate to childrens.

[TestifyToLove]

Its been a long time since I posted on this thread. We were so lost in little guy's out of control behavioral issues, I couldn't even think about his SID issues for awhile.

But, he formally started OT with a therapy center that specializes in Sensory Processing issues 2 weeks ago. Therapist thinks she can reduce his temper tantrums by 50% within 6 months. I'm skeptical but we shall see.

I'm planning on making his Christmas all about getting him the sensory diet he so desperately needs.

[TieNappyQueen]

I was skeptical to but only two weeks of therapy and he is a new kid, wonderful, so have hope and confidence!

[clothmommy]

i just wanted to let everyone know that discount school supply sells a lot of sensory stuff at pretty good prices. i have always bought my arts and crafts stuff there and i noticed they had a whole special needs section the last time i got their catalog. they even have those brushes for brush therapy... weighted vests, etc. i got DD some cool chewie toys that don't look like baby stuff so she can feel "big girl" but still have what she needs, LOL!

[xelasminin]

thank you for the information!!!

[LisaV]

Yes thank you for the info.

So how is everyone doing? It has been crazy around here. Garret is out having some daddy and me time and I'm loving it. How did the long weekend go for everyone?

Garret starts preschool next week. He also had his first gymnastics class. He was the only one who could hang off the bars and pull his legs up using stomach muscles. We will be busy this fall with preschool, gymnastics, and OT. Hopefully it won't be to much for ME!:giggle2: (not to worried about him because it will be a good schedule and help us get out of the house once the snow flies) Hope to hear from others again soon.

[TieNappyQueen]

thanks for the tip!
Lisa e is the same! I iwish we were closer!
Anybody got there swings up and running yet?
E is doing great still with therapy, they are doing the is special music that is tweaked for him, very cool stuff!

[pillywiggins]

Renny is having her eval tomorrow at the university. It's going to be a long day for us. It's a 2.5 hour drive so I have to leave around 5 am with her.

Her OT came over today and said that she will bury herself if Renny gets a autism diagnosis. I told her again, I don't think she's autistic but she does some odd things that I can't explain. The OT did some assessing with her again today. Renny scored 100% on all the tests that she would give to 3 years and older. Renny isn't two yet. She said Renny is really too young to know how to self-correct but she did it. So our OT thinks that some of the odd behaviors is Renny's brain going a mile a minute and thinking.

We'll see what they say tomorrow. Any words of wisdom on what I should discuss with them? We'll see the Developmental Pedi, OT, Speech, and a couple others.

[TieNappyQueen]

Good luck, if you have kept a journal bring it, tonight and on the way when you think of something write it down, ANYTHING!
Let us know how it goes!

[pillywiggins]

Quick update (more later), she was diagnosed with PDD NOS and of course SPD. A lot to take in yesterday and a long day. We left at 5 am and got home at 8 pm.

[mom2olivia1]

WOW, i didn't know there was a thread on this. My son "has" SID...so we were told back when he was 3 from and OT who tested him. My ds will be 9 in november and we are just now bringing back this topic after years of dealing on your own and getting overly frustrated that i am going to have him tested again so we can seek a therapy plan.

Back when he was 4 he was getting speech and OT and "graduated" from it after his kindergarden year. We moved to a new town when he entered first grade. I told them that i had plans of holding him back after first grade because i knew he would not be ready to move on. He was a very young first grader and i only entered him in kindergarden because he never napped and was sent so he could get his speech through school even though educationally I didn't think he was ready. To my amazement he learned to read in kindergarden like a dream. He barely knew his ABC's for the kindergarden screening....

LOOONNNGGGG story short....ever year the teacher contacts me telling me she has a hard time keeping him on task...that he fools around and refuses to do classwork and asks if he can just take it home or do it later...while the other kids have to do it right then.

When he plays with my niece and nephew who are 3 and 4 he needs to be watched and reminded how to play properly...he doesn't recognize that he is the other one and should be setting an example...yet...when my dd who is 18 months old is near...he instantly becomes the "mommy" and is suitably protecting her...my other 8 year old acts and thinks he is 15 and typically wants nothing to do with playing with little kids...and if they are playing with him he doesn't ease up because he is a competitive child.

We have a unique situation in that my 8 year olds are two months apart and are our boys through adoption. They have the same ethnic background so many think they are twins until they realize they are two months apart and then heads start scratching. i almost wish they were more like 10 months apart so we didnt have to continually explain how they aren't twins, but the same age...blah blah blah.

What also makes it unique is with one having SID and not the other i can't help but make comparisons between the two. The younger one didn't go to kindergarden at the same time as his birthday fell after the cut off, but now as planned they are back in the same grade. My younger son would help me try to teach the other one...when they were 3 i couldn't understand my SIDs son (oh dont' think i call him that because it was only the other day i coudl even remember what it was called that he "has"...but i am refraining from mentioning names online.

I am trying not to type a novel so i will jump to what we deal with today. I have chores that i expect of the boys. EVERY day is like a new day...a clean slate where i have to go over EVERYTHING AGAIN. No clothes are allowed on the floor or the dresser. They are supposed to be folded and inside the drawers and drawers are to be closed. I KNOW i am expecting a lot from them, but for the fact i am very consistent with what i want and i know they have learned to put things away at school i feel i should be allowed to expect them to clean up after themselves. NEVER does my son follow through. i will send look at the room and say..."how is THIS clean?" He huffs and puffs and i tell him to get it done the right way...these clothes dont belong on the dresser. He tells me it is done...i say..."so i should go and check it and it will be exactly like i tell you every day it needs to be"...he agrees i can check it....and there will still be things on teh dresser....if not the case he will just put the clothes on the floor...:banghead:

It takes him a MILLION years to do anything...he is swooshing his hands in the air playing combat with his fingers. One of the sensory dysfunction effects is that he will NOT talk loud enough. His voice blends into the environment...i can NEVER hear him. i say "what?" and he repeats in the same tone or even quieter. I explain that when i say "what?" it is because i can't hear you and you need to speak louder...he will repeat and AGAIN....not any louder than the 5 times i asked him to talk louder. Then when he is in the playroom he is the loudest one in there and i am continually telling him to quiet down...the poor kid is being asked to talk louder and then be quiet in almost the very same time frame...and this has not changed in the past 6 years. He is very unmotivated unless you say he can watch cartoons with which he will sit there with his mouth open for hours and hours if i let him. he is typically grounded from the tv. His motivations are being able to play xbox, watch cartoons, and eating (he is so skinny he looks anorexic. I am always trying to change the consequences of not cleaning up after himself because nothing works. Recently i decided to give taking food away a try (please don't think this is cruel because it is an experiment and nothing else is working and he would never starve...knowing what it feels to be hungry i don't think is a bad thing....i need SOMETHING that he cares about that will keep him on task and not forget "or fail to think" the next time he is found not putting his plate in the dishwasher...that was the rule...if you eat...then you rinse and put in the dishwasher. they eat in the kitchen and put the dishes on top of the dishwasher...i don't think it should be too much to ask that you rinse and put inside instead of plop on top...SOOO seldom does he do this without me asking. The plan was if you don't do that then you can eat at the next meal....so the next time he eats...he has been making sure the dish makes it in the dishwasher, but he doesn't scrape and rinse.....it is never the complete job.

In a nutshell, my ds "doesn't care"...no punishments/consequences are changing his behavior. If others fool around at school he does. It is always someone else's fault. He will manipulate the truth, he has a very hard time with subtraction, telling time and logical thinking. He has a great imagination when it comes to his drawings, yet doesn't know how to explain why he did this or why is thinks that. You have to speak very specifically or else he doesn't know what you mean. both boys play on a football team....the coach asked us if we would figure a way to motivate our son because he could be so much of a better player if he would produce....well...we have no idea how to do that....the only way that MIGHT work is offer him money or candy and i really am against bribery...especially since the boys are materialistic as it is and we aren't doing all that well financially right now with my dh just starting a new job after being unemployed for 9 months....i have been trying to teach them about conservation and by not wasting and that isn't working with either boy.

I am to the point i am begging for intervention so this week i am calling to see about getting him evaluated.....there has to be something we can do to find proper motivation and know what types of intervention could possibly make a difference....I am so frustrated with living ground hog day over and over as if what we talked about yesterday never happened.

[TieNappyQueen]

Dawn I know how you feel, will respond more later just a hug and a welcome!

[mom2olivia1]

Dawn I know how you feel, will respond more later just a hug and a welcome!


I look forward to being active in this thread...since i have been dealing with this longer than some but for so long w/o pro intervention i hope this will help us get help and also assist those who haven't gotten this far in age yet to be better prepared for the school years.

[LisaV]

It has been awhile since I have posted. Hello to all the new mamas and :hugs: to anyone that is in need of one.

So Garret had one of the largest breakdowns for bed tonight that I have seen in some months. DH and I have been trying to figure out why. DH informs me that often G does this for him but just not as bad when I am working at night. So we discussed how it is important to give in warnings as to how long he has before bed and to stick to his routine of brushing teeth and books.

On a positive note G has been great when going to preschool, OT, and gymnastics. I have been so proud of him for how well he is doing. So we will be off insurance for OT for the year so it will be cut drastically. He will go get tested at the local school district for early childhood.

I also found a charter school that is montesorri based. Has anyone had experience with montesorri and SID or SPD or ADHD. I am thinking because it is more hands on and not always stuck in one spot, but then the structure in public schools I can see at times being an advantage.

Have a good night everyone!

[TieNappyQueen]

IF E goes to school it will be mont. He went for half a day to feel it out ( then they got full before I could get the down payment in) and he THRIVED!!! Since you G and my E are so much alike I would say GO FOR IT!
I feel ya on the bed thing, that was an amazing hurdle that we are glad to have figured out. DO you ever use a timer? I have to keep one with me all the time and got him a watch with one on it. FOr whatever reason the timer works wonders! I can tell him warnings all day long but when there is a beep with it, CLICK he gets it, no contest everytime!

[LisaV]

We have done a timer for eating just so he would sit at the table for 5 min. with us. It worked wonders. This is the first bed issue he has had because normally I am the one putting him to bed and DH has never told me of these problems before. I have discussed with DH how he needs the warnings multiple times before bed but I think the timer would work better. Thanks for the hint.

I am very hopefull that G will thrive in a Mont. He visited one last year but he has made so many improvements in the last 6 months so I think he would do better. The charter Mont. is looking at starting an early 4 yr old program that we may look into for next year if so.

[TieNappyQueen]

Glad I could help and I am jealous of the charter oppurtunity!

[LisaV]

Okay very stressful evening Sorry I need to vent for a minute. G would not go to bed and doesn't help DH is out of town for week. I know G was sad and angry that daddy left. Most of the day went fine. We had our count down to bed he tucked in nice but would not settle down. This woke up DD and she started crying so he came out. It has been a lot of struggles lately with talking back and pushing buttons when you ask or tell him to do something he just smiles and laughs at you. I know he needs to get out and get more exercise but I have no energy left myself.

I really need to focus on his diet again. We worked on it then I became lazy because I hate being the main support. DH is all for it but I just don't feel the support and effort from him. Budget gets tight and it is harder to keep carbs out of the house since they are the cheap items in the store.

I guess I am just losing motivation and need to find it again. I know it is best for him but I want to be selfish and have something just for myself once. Thanks for listening. I will go get a good nights sleep and work on things in the morning.

[pillywiggins]

Lisa, we can find the motivation together. We just started the process of eliminating dairy for weeks 1 & 2, then off to gluten the next weeks. It's a hard adjustment for us. The timer is a great idea too, thanks.

We have started using melatonin again with our bedtime. We used it for a while but stopped when we thought Renny had a better sleep pattern down. She's back to herself again and will not go down (or our oldest who's a avoider).

I'm excited that MY family doc is going to take on Renny. My doc practices eastern/western meds and does a lot of supplements, removing metals, yeast, etc. I called to see if she could at least order allergies/stool testing like she did for me. She called me back and said she would take her as a patient (doesn't see kids), get the testing done and help with a plan for supplements. She's already been in contact with a few ASD groups. It's very exciting that I don't have to find a DAN doc since she practices the same thing except usually for women only.

DOH, one just woke up. Post more later!!

[LisaV]

Thank you for the support. I think I will try to follow what you are doing and doing the weekly removal and then stepping to the next. G will be so sad because mac and cheese is his favorite. Do you know of any good sources on finding foods that work and are dairy or glueten free.

I am lucky we have a trader joes nearby and they have a lot to offer at reasonable prices. I really should find out more about the supplements since G is not taking any now. Thank you. And :hugs: for you and your family.

[TieNappyQueen]

Oh lisa we are here don't worry, diet is such a hard think but as you know soooo worth it. We feel the crunch here too. DO you do arm squeezes with him. THat helps alot. WE also started this music therapy, if you want I can burn you a copy and you can try it, it is CRAZY sounding but it has been great for us. It took him about a month to work up to 20 minutes and now her is at thirty, he loves it, it calms him and resets him. He gets it twice a day. Here is some info on it http://www.vitallinks.net/parentinfo.shtml
It is so hard to talk to frineds about this kind of issue, they all chalk it up to age or attidute, defince blah blah blah. We are here so vent away!

[TieNappyQueen]

We are dairy free, I will check for some mac and cheese options:goodvibes:

[LisaV]

Thanks for the support. We do the arms squeezes but I need to get in a few extra brushings I think a day. I am also going to buy a white board and make a schedule for us. I am going to try to follow his preschool schedule so everyday is near the same or very close. I may take you up on the CD thing. He has tried that but we had to give the CD back to his old OT. Our insurance doesn't cover it. We are coming up to the last of our visits under insurance so we will be dropping back to ever other week until the new year when it kicks in. We only get 20 visits a year and then it is out of our pocket. That isn't much. We can get a reduced rate but still is 3 times what we pay with the copay of insurance.

Thanks for looking for mac and cheese. G will be so happy if I can find something.

[meghann8]

Peeking in this thread. :) My Ds Logan has sensory issues. It seems like every time we get him through one issue, something new pops up. First it was anything slimy, then it was anything sticky. Yesterday, a new one popped up. He became hysterical about mosquito spray. Yay. Living in Georgia, with a creek behind our house, it's kind of a necessity. So now I'll be looking for non-spray options for him.

Logan is on the autism spectrum, giggles when we do joint compressions, and sleeps in his body sack. :)

[pillywiggins]

Lisa, here is the link we are using for the 10 week to GFCF. It has some awesome recipes in there too. I think you will find it very helpful. It's really helping us.

http://gfcf-diet.talkaboutcuringautism.org/index.html

Last night I made pork roast, mashed pots/gravy and peas. We used almond milk and Fleishmann's margarine for the potatoes and gravy. It really was quite good. Doesn't make any difference to Renny since she doesn't eat any of that. We have noticed that we cannot have her food touching. She will also only eat smooth COLD things like yogurt, applesauce or ice cream and WILL NOT touch smooth hot or warm things.

We ended up having to give her corn chips for dinner last night. It's so frustrating because her sisters have to get them too. Both were crying because Renny had some and they didn't. They aren't old enough to understand what is going on. Just very hard on us because we try really hard to serve healthy foods but Renny only eats any form of chips, cereal, popcorn, yogurt, ice cream or applesauce. THAT'S IT!!

[LisaV]

:hugs: I have been fortunate that G will eat most anything. Today was a sort of cleansing day. We cleaned their playroom and I organized areas in it. I now have a reading and puzzle corner. Arts and crafts corner and the rest is open. I figure every week or so we will take out some new toys. Right now it is trucks. It was great to watch G so happy with toys he hasn't seen in awhile. I also bought a big magnetic white board and we are going to write up a schedule together so his days have more structure and he can see what is coming or what is done. When dad gets home we are also going to write up the house rules since I feel that it is time for him to really start learning them (ex: using words not hands or teeth, sitting for dinner for a few min. with us, etc)

Thank you for the website and info. I will check that out.

[pillywiggins]

So Renny didn't get the diagnosis of SPD. They have Sensory Disturbance down for her which means nothing to me. Their reports describe SPD so why didn't they put it on there? I know it's hard for the diagnosis. What do I need to do to get this on there? I think it's really important for her future. It kills me because they recommended the brush therapy and compressions but they can't put SPD down?

She also has the diagnosis according to her reports:

Pervasive Developmental Disorder NOS
Feeding Problems
Mixed Receptive-Expressive Language Disorder
Behavioral Problems NEC

[LisaV]

That stinks! Have you asked them why they have only placed her as that and not SPD? We didn't get even that close. We have muscle incoordination and something else but nothing that would really get G help. He will be evaluated by the school district next Friday to see if he qualifies for early childhood.

[TieNappyQueen]

I am hoping and betting it is so insurance will cover treatment. Our therpist told us that and did that too. Offically he is SPD Hypo, senesory seeking with aspergers as well. But tricare doesn't recongize either as therapy needing so they write the report in those ways to fit insurance criteria.

[meghann8]

Does anyone else's child use a body sock? Logan sleeps in his, he's only had it for 4 months, and it already has a seam unraveling. Has anyone else's started falling apart this quick? Do you know of any WAHM's that make them? Might be nice to have a backup and I don't want to have to buy another one on feebay.

[LisaV]

I don't have a body sock. I maybe able to make one since I do sew. I just need to see a picture or one up close and what types of material. No it should not be unraveling if it was sewn together properly. I understand about the insurance. What happens when they become school age will your school also not assist then since they don't have a diagnosis.

[pillywiggins]

I am hoping and betting it is so insurance will cover treatment. Our therpist told us that and did that too. Offically he is SPD Hypo, senesory seeking with aspergers as well. But tricare doesn't recongize either as therapy needing so they write the report in those ways to fit insurance criteria.

If I'm understanding right, insurance won't pay if you have a SPD diagnosis? It's better to have Sensory Disturbance on file? She is also SPD hypo, sensory seeking. I wonder what our criteria is for our insurance. Right now she is in EI so I have a year to research this.

I've never heard of a body sock. I would love to see a picture of it.

[TieNappyQueen]

yeah alot of them won't triacare being one. SUcky I know, but I am lucjy enough and it sounds like you might be to that they know how to word it in that it hits all of there challenges but in a way that the insurance has to cover it.

[LisaV]

Good luck with your insurance and make sure you ask them.

As for the body socks. There is a mama on ebay that sells many items for Autism and it looks like she makes them for around $13-$20 plus shipping. luckymommy_2. I may have to get G one. I think he would love it. She also has an item like an I spy bag but larger and heavier that I think he would love in the car. Have a good weekend everyone.

[TieNappyQueen]

i amke cheery pit ones :goodvibes: you can heat them up or make them cold as well.

[TieNappyQueen]

wow I really can't type tonight!

[LisaV]

How much are yours? Are you ISO anything because I would LOVE one.

[nrsenadenos]

I'll have to go back and read the first 18 pages, but wanted to jump in on this thread. They suspect my middle child has SID/SPD. She has been in therapy since she was 2months old for one issue or another. At 20 months she is behind on her speech and gross motor skills. We are starting to see a developmental specialist a week from Monday and are waiting to hear about an eval from the OT and the speech therapist.

I'm about a third of the way through the Out of Sync Child and I think she is a fluctuator leaning towards a sensory avoider. Even before learning about SID/SPD I would describe her as being "bipolar". She is very resistant to new things and new people, wouldn't eat solids because of texture issues, and is way beyond moody on a bad day.

Anyways, looking forward to talking to other moms who deal with this!

[LisaV]

Welcome! Yes do read back because I know there have been many suggestions that have been shared. Also when you are struggling drop us a line.

How is everyone else doing? We have been glueten free for almost 2 weeks. We seemed to have a down slide but working our way back up. Not looking forward to the cold and having to stay in more.

[nrsenadenos]

Boy, that was a read. I'll admit that I skimmed some of the longer ones, but :hugs: to all you momma's! A couple of thoughts/questions...

How long did it take you to get a diagnosis? We've been dealing with OT since she was a year and EI since she was 18 months and no one can seem to tell me if she really has it or not. She does fit some of the things I've read in the Out of Sync Child but she doesn't appear to be as severe (yet) as some of the examples or some of the kids here.

I am reading the Out of Sync Child right now. The EI evaluator also recommended "Sensational Kids" and someone on a yahoo group I joined recommended "Raising a Sensory Smart Child". Anyone read any of those?

Anyone else have a rocker? To calm herself to sleep Athena does one of two things - she either lays on her back with her blankie (she only sleep with crotchet/knitted blankets) and rolls from side to side as fast as she can or she will get on her hands and knees and rock back and forth that way - to the point where she is stripping the screws in her crib and we'll have to put her in a real bed soon. Is there any way to make her stop?

Anyone trying supplements? I know on the SPD Yahoo group I'm on several moms are trying probiotics, digestive enzymes, grapeseed oil, EFAs, etc.

Anyone do swim therapy? EI wants her to try a group swim therapy class, and the idea is making mommy very nervous!

And lastly, anyone have a DH who doesn't believe that there is a real problem? My DH seems to think that she is just stubborn and doing things at her own pace.

[LisaV]

Just checking in. Saw that it has been awhile and wanted to see how everyone is coping. The weather is getting colder here but we are on our fall schedule with preschool and activities.

After this month we drop down to OT only 2 a month until the beginning of next year. It will be difficult. That is the one plase where G never argues about going to. Everything else has been good. G is definetly in the NO phase. We have been gluten free for 3 weeks and counting. I haven't noticed any changes other than he gets up in he middle of the night hungry. I am going to try and give him more protein before bed and see if that helps.

I think in a few more weeks we will try cutting out dairy. Still biting our nails. 1.5 years since I have had to cut a finger nail. At least they don't seem to be as sore anymore.

Funny store is that he cut his hair for the first time on his own. He was so proud of himself. I then had to go and shave the rest to match alittle better. Hope everyone is having a good month.

[nrsenadenos]

We had our first OT appointment today. Talk about a lot of questions! We see her again in 2 weeks and she'll let us know how she scored.

[TieNappyQueen]

Good luck!!
E was approved for PT and speech on top of his OT!!!!

[LisaV]

Good Luck and don't forget to ask questions if you ever have any.

Congrats on your approval. You are one of the lucky few.

[nrsenadenos]

So who did your diagnosis? They asked me yesterday if she'd been given a diagnosis of SID/SPD and I said no, I thought that was what they were going to do. Everyone keeps suggesting or hinting that she has it, but we haven't actually gotten an official ruling.

[meghann8]

With Logan, we have a referral to a developmental pediatrician, and apparently that is who is going to officially diagnose him. We're thinking his goes beyond just SID though, everyone seems pretty sure he is on the autism spectrum somewhere. So I guess we'll see.

I'm kind of annoyed. The place where Logan gets his PT and OT, isn't an authorized provider for speech yet through the military insurance. So we had to be referred somewhere else for that. The place we were given is over half an hour away. If they want to see him more than once a week, we are going to be doing a lot of driving, and I'm not too happy about that. The place he gets OT and PT is working on becoming authorized to do speech too through our insurance, and I'll probably switch him there once that goes through. But who knows how long that will be. Sigh.

[nrsenadenos]

That is frustrating. I feel like all we do is run around to appointments lately.

[meghann8]

Ok, I just tried calling to make his appointment for the developmental ped., and they are booked solid through September 2009. Kind of a problem.

[nrsenadenos]

Ok, I just tried calling to make his appointment for the developmental ped., and they are booked solid through September 2009. Kind of a problem.
Yikes! Is there a waiting list?

[LisaV]

So does anyone else have difficulities with tantrums? Today at Preschool it took G over 30 min. to calm down. He was fine when I dropped him off and I can't remember how it all started but apparently he didn't want to do something and had a tantrum. The teacher had to pick him up and take him to the office. He would scream and kick/hit and then he would ask about a picture and start up all over again.

I am trying my hardest to get on a reward system so any suggestions would be appreciated. I am also scared because we cut back our OT sessions next month. I am thinking and looking at finances to get him back into Play Therapy which she helps him in recognizing his body vs just meeting the physical needs. thanks for listening.

[TieNappyQueen]

So does anyone else have difficulities with tantrums? Today at Preschool it took G over 30 min. to calm down. He was fine when I dropped him off and I can't remember how it all started but apparently he didn't want to do something and had a tantrum. The teacher had to pick him up and take him to the office. He would scream and kick/hit and then he would ask about a picture and start up all over again.

I am trying my hardest to get on a reward system so any suggestions would be appreciated. I am also scared because we cut back our OT sessions next month. I am thinking and looking at finances to get him back into Play Therapy which she helps him in recognizing his body vs just meeting the physical needs. thanks for listening.

oh honey i wish we were closer!:hugs: we deal with that with e everyday, therapy has mad e ahuge difference! ( SIde note I am very blessed that he can get all three of his at the same office in a three hour block, OT, then PT, then speech, three days a week) E does terriable with transitions and choices. Crap j up, will write more later:hugs:

[LisaV]

it's not even transitions but just when he is asked to focus mainly. I am just afraid that soon he will be asked to leave school or classes because he has such trouble focusing. We are on the glueten free diet and have not noticed any changes. It has been 3 weeks so hopefully in the next couple weeks if we do. After that we will also be adding dairy free.

I hate that insurance doesn't cover much and everyone charges so much even for one session. I am also worried with winter coming on and restrictions on going outside will also make it worse. I am going to try and take him to an indoor playground at least once a week.

Brushing also does not seem to affect him much. He has to be bribed to do it. Sorry such a long rant but I knew that there were others here that understood.

[nrsenadenos]

:hugs: Hugs Momma! We are in the midst of a meltdown right now, made worse because she isn't feeling well - she woke up with a low fever this morning. No suggestions on rewards though, we aren't really old enough to do that yet here.

[TieNappyQueen]

ok not long but will try, e can't focus worth a darn unless it is on his terms and that is a crap shoot! It is the main reasaon we choose to unschool him for now.

[SewingSeedsMama]

My DS seems to have some sensory issues and I had a friend tell me about SID, which I had never heard of. He can't stand loud noises or messy hands, has texture issues with foods, and doesn't do well at all in any kind of school-ish setting. He gets in trouble almost every week in sunday school.

He's 4 1/2 and we're doing some pre-school at home (which he does fine), but he would not do well at all in a regular pre-school setting. He actually seems to be improving as he gets older, but is this something that I need to get checked out? My DH didn't really like the idea when I brought it up.

Thanks Mamas :)

[LisaV]

It never hurts to check it out especially if you feel that you need help! It can be difficult sometimes when others don't see or are not as close to the situation. I know therapy has done wonders for us and I don't know where we would be today without it.

The preschool was sort of my reprieve for a couple hours in the week. He had been doing so well but it is just recently that there have been more difficulties. He even went all of last year. He says he just wants to stay home with mom.

I am going to start encorporating preschool items throughout the day that are more physical based and see how that goes. Thank you all for listening.

SewingSeedsMama best of luck with your choices on being evaluated. We are here for you if you ever need to talk or what to bounce ideas or get some suggestions.

[meghann8]

Yikes! Is there a waiting list?

Just saw this, and wanted to give an update. Apparently, since the developmental ped. is booked solid for the next year, she's not even taking new patients. Sigh.

The receptionist gave us a few options though, so we'll see how it plays out. Logan is going to see a cardiologist in the same practice in a few weeks, and she said that sometimes one dr. in the practice can talk another one into squeezing in a patient. So there's that option. The other option is they have two pediatric neurologists in that same office who specialize in autism, so we could go that route. I guess if cardio can't get him into the booked dr., we'll go the neuro route.

Although I have to admit, I'm hoping more for the developmental ped., as we've dealt with multiple pediatric neurologists in the past with one of our other kids, and it was not a good experience.

[SewingSeedsMama]

How would you get a child checked for SID? A regular doc or specialist or...?

[nrsenadenos]

Although I have to admit, I'm hoping more for the developmental ped., as we've dealt with multiple pediatric neurologists in the past with one of our other kids, and it was not a good experience.

Ok, glad I'm not the only one with that problem. We saw one when she was really little because of her flat spot, and we were in his office for maybe 5 minutes and got charged $200 because the insurance didn't cover it. For that price I felt like we totally got jipped because he hardly looked at her! And then we saw a different one a couple of months ago to see why she wasn't walking, she just looked her over and said she didn't want to walk, and didn't go into the sensory stuff at all. :banghead:

[nrsenadenos]

How would you get a child checked for SID? A regular doc or specialist or...?

In our case our PT recommended to the pedi that she get checked for it. The pedi then referred us to an OT who found it to be inconclusive. They then waited 6 months, and since she was experiencing developmental delays they referred us to EI, who sent/is sending us to a speech therapist, OT, and developmental specialist. They are still thinking we might have to see a developmental pedi as well.

I'd start with your regular doc and see if you can get referrals somewhere first and see where that takes you.

[mbillitto]

How would you get a child checked for SID? A regular doc or specialist or...?


You can either have an OT that specializes in SID do it because they have a checklist. There are many sites out there that also provide checklists for you as a parent. My DH is very wary of the diagnosis since many pediatricians don't even recognize it. but my son has had so many evaluations that there really is no denying it and he isn't registering on the autism scale. It is so frustrating because my son is not severe enough to be put into an EI preschool (Because they don't do that just for SPD here) but he is having issues in regular preschool. And OTs are so backed up that we are waiting for an opening for therapy. Ugh.
Here is a good site for some information and it has a checklist on there too.
http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html

[princesshannon]

Ok...I feel better. I have been following this thread because I am concerned about my youngest ds...you are all so helpful, kind and free with information. I have an appt for ds now to go to pedi to get a referral for OT. We already get speech, but we have feeding issues and he has started clenching his little hands into fists. He relaxes them when he sleeps and other times during the day, but it concerns me. The speech therapist essentially said that he had already developed all of the necessary sounds for normal speech, but that he simply refused to imitate anyone...and since imitation is necessary for speech development...we are stuck in baby talk land. This all started after a 10 week long bout of sterile bowel after a case of rotovirus. He retreated, stopped eating, stopped sleeping, and stopped talking. Thankfully I was still bf some, we had to go back to exclusive bf to get his weight/energy back up. We are trying to get the food going again...

Sorry for the novel, but thanks for the thread!

[MamaZelly]

It is the main reasaon we choose to unschool him for now.


Is "unschooling" just another name for homeschooling, or are you not doing any structured education at all right now? (NOT meant as a criticism in any way--just looking for clarification)

:goodvibes:

[MamaZelly]

What do you do once your child ages out of EI? Gus is almost 2, so he only has a year before he doesn't qualify anymore....what have those of you with older kids done?

[meghann8]

As far as unschooling goes, there is a whole thread in the homeschooling section if you'd like to read. It's more a philosophy about not doing a curriculum, but more letting the child learn what they want, when they want.

As far as graduating from EI, our dr. put in referrals to a private therapy place, and our insurance covers it.

[mbillitto]

Here in Florida, the EI that ends at age 3 ended with an evaluation from the next organization that takes kids ages 3-5. This info was given to me by my ages 3 and under EI case worker. Maybe you can ask if your state has another organziation that picks up kids from 3-5 yrs?

[meghann8]

I just had the thought and wanted to add, in some areas, the school district becomes responsible for the child starting at 3.

[MamaZelly]

Thanks!!

[LisaV]

Our school district becomes responsible here but it is harder to get into for therapy than our Birth to 3 program. I got a referall from our Dr. to go elsewhere. I am changing the title to SID or SPD parents just to give you all aheads. Hope everyone is doing well.

G is doing great since we have cut out the glueten again and removed tv and it is a reward now.

[AVDesigns]

I've looked at this thread a couple times. SIL (she's an OT) says my DS has some sensory issues. She says he's hyposensitive. He's very rough. Loves to be played with rough and be tickled a lot. She gave me some exercises to do with him like jumping and having him walk on his hands with me holding his legs.
He also has some speech issues we are going to have checked out. She suggested that we have OT, PT and speech evals done by his ped.

How did you all go about with evaluations and such?

And I'm tired of my family's comments like "oh, he's just a boy". OK that's fine..but if he does have issues I'd like to have them evaulated. Ugh. Sorry..vent there.

[mbillitto]

Amanda - my son is also hyposensitive and is much like you describe. we just let him jump and crash into stuff. In our house, couch jumping is ok!! LOL!
Part of what I learned when my son was going thru speech therapy, was the speech delays are pretty normal for hyposensitive kids. It is like they are way too busy needing touch simulation to want to sit still to learn to talk.

I started with my pediatrician who gave me a referral to a ST. However, later I learned that Early Intervention covers speech so we could have gotten it thru them. But since I didn't know about them before we started, our ST was private. Once we started ST, the therapist noticed the behaviors that were classic SPD. She told me that I should get my son evaluated by an OT for a diagnosis. Once that happened we were able to obtain OT for him, but only until he turned 3. This year I have been trying to get him in the 3-5 program, but since his speech is now caught up, we are back to an OT with a specialty in SPD. However, most of the success we have had, has been thru activities in the book "THe Out of Sync Child Has Fun". That book has helped us out a lot! I also learned that the symptoms of the SPD change as they get older. My son has always had tactile problems of needing to touch and smell everything. However, now he also has audio problems too that he didn't have before.

I am not sure how old your son is, but the early intervention program is from 0-3 years. I am in Florida and at 3 years if they still need intervention, they go to another Early intervention program for ages 3-5 that is in the school system. I would definitely ask your pediatrician for any info they may have on early intervention programs.

Good luck!

[LisaV]

I would have to agree with mbillito on the book referral. We have that one also and love it. My son is very similar to yours Amanda. Unfortunatly we were unable to get a spd or sid diagnosis but he is seeing an OT. We had speech concerns because often times G would not use the muscles around his mouth. We started by just getting him to make faces to stretch and realize he could form with his mouth. They do oral excercises at is OT appointments stretching his cheeks and touching his tongue type of things.

We also started with a referall from our dr. and went from there. Good luck!

Oh yeah couch jumping is also okay and we love tickle fests. It has been recommend that before G goes places were he may need to focus to have him jump or brush him to desensitize if he will need to be touched.

[AVDesigns]

I'll have to check that book out. I know my SIL told me some things about ST also. sweet foods loosen his cheeks and sour foods tighten them. She said practice different mouth movements that you make with certain sounds that he can't form. We're going to try that.
I'm very annoyed because anytime I bring it up with DH he says "Oh..what did Dr. Chrissy say?" It's like he thinks I'm just looking for something to be wrong. But actually I'm just looking for a reason why he doesn't seem to be doing things that at this age I think he should be doing.
Does him putting things in his mouth still have anything connection? He'll be 3 on Jan. 24. And he hates riding in the car (on longer trips over an hour or so) and a lot of times if we have to go grocery shopping or something that will take a while he goes into a fit pitching mood in the stores.

[TieNappyQueen]

I've looked at this thread a couple times. SIL (she's an OT) says my DS has some sensory issues. She says he's hyposensitive. He's very rough. Loves to be played with rough and be tickled a lot. She gave me some exercises to do with him like jumping and having him walk on his hands with me holding his legs.
He also has some speech issues we are going to have checked out. She suggested that we have OT, PT and speech evals done by his ped.

How did you all go about with evaluations and such?

And I'm tired of my family's comments like "oh, he's just a boy". OK that's fine..but if he does have issues I'd like to have them evaulated. Ugh. Sorry..vent there.Welcome! We are the same way here. It is very hard to hear everyone say, "oh he is a boy." " oh he is a toddler" oh he is just spirited" " you are just being a anxious mom" blah blah blah blah. SHUT UP! They don't get it and won't. The best you can do is ignore it and learn everything you can about what he has so you can educate others. My mom and dad have been amazing, since they are in atlanta they can go to seminars they have on it so they can learn more without being around him. I saw you are in GA, where? I am in town visiting for the week, maybe we can meet at a park:goodvibes:
Hope you feel some commroderie here, I sure have!:goodvibes:

[nrsenadenos]

Wish us luck, we have swim therapy today!

[Knutsonfam]

Wow! I know very little about SID and I had no idea so many children deal with it. My daughter is 7 yo and has been diagnosed with SID. She absolutely can't handle having her hair combed. She is extremely picky about food textures on her tongue and lips, as well as temp. She is picky about the clothes she wears - the feel of the fabrics. She also has problems with socks. If they don't line up just right it's a major melt down and everything has to be taken off and put back on just right. Although she is very verbal, she struggles socially. She is particular about music as well and has to listen to the same song over and over, which drives her younger bro. crazy! My mil has had it with her and says things like "she wouldn't get away with that at my house"...and "at my house she'd eat what I put on her plate" It's so frustrating because it's like she thinks our DD is this way because she is spoiled and if we just crack down on her harder and force her, she'll magically change. Maybe she is spoiled, but that's not why she has the issues she has. And instead of beating it out of her, which wouldn't work anyway, we are trying to practice patience and develop coping mechanisms.
Thanks for reading

[MamaZelly]

Hi Kim--I know exactly where you're coming from. My parents' generation just doesn't seem to get it, and my mother is convinced that if we would just throw some pills at him, that would fix everything. *sigh*

My father in law is the worst, though...."SID?? What the hell is SID? In my day, there was no S-I-D, or A-D-D or A-D-H-D...there was just D-U-M-B. What's he gonna have next??"

Oy freakin' vey.

[Shadowwolf549]

My son Jaren is 3 and he has SID and PDD-NOS and we are ruling out a genetic disorder. We aren't really sure what is going on with him. We took him to see a geneticist, but she said (before she even really looked at him) "Why is he here? He's perfectly normal. They worried you for nothing." WTHeck!! His developmental pedi didn't seem to think it was for nothing. :banghead: Anyways. He has been getting ST, OT but timed out of the early intervention program when he turned 3. We are getting him eval'd by the school system to do therapy. They are concerned about low muscle tone and not know where he is in relation to other stuff. He is probably going to be getting PT, OT and ST. But we will do whatever we need to for my little man.

He is the sweetest baby you ever want to meet. We call him Muffin (short for Love Muffin). He is very much into music and dancing. He loves to rock himself in his bed and to shift from one foot to the other while watching TV. Sometimes you have to tell him to do something 800 times before he will even acknowledge you. His speech is getting better, but sometimes I still have trouble understanding him. He is very funny too. He is always doing something silly.

We worry about him starting school. He is baby B of our triplets and we worry about the differences in the other kids. His brother Jeremiah also has a speech delay, but we think it's more that he doesn't want to talk, b/c when he feels like it you would be surprised by how clear his speech is. He is always just too busy trying to figure out how to get into mischief to stop and talk.

So that's our special man. He loves to be loved, but gets overstimulated in large crowds and is texture defensive at times. We went to the pumpkin patch the other week and he refused to get into the corn house, but he would sit with DH as long as nothing was touching him. Then gradually we made a game out of it and poured it over his head. At first we were freaked out but then he mellowed and started having a good time.

We are always grateful for the little victories. Like staying in the nursery at church or sitting on the potty. He has such a bright future, he will just need a little extra lovin' and help to get there.

We totally get the frustration with other people not understanding. We have been told by more than one person that he is just spoiled and that we just need to toughen him up. I'm always very protective of my kids. You mess with them and :gonnagetit: I wish people would just be supportive and not try to give unwanted advice. KWIM? If you haven't been there, you just don't understand. :hugs: and thanx for reading my novel. :giggle2:

[nrsenadenos]

My DD got her results back. She is tactile defensive/sensory avoiding.

[TieNappyQueen]

nicole glad you got a result, what now for you all.
Angie, welcome, your muffin sound precious! It is so funny to read stories here and be like, that isn't normal? :) I have a rocker too. Your last two paragraphs are so true!

[TieNappyQueen]

Hi Kim--I know exactly where you're coming from. My parents' generation just doesn't seem to get it, and my mother is convinced that if we would just throw some pills at him, that would fix everything. *sigh*

My father in law is the worst, though...."SID?? What the hell is SID? In my day, there was no S-I-D, or A-D-D or A-D-H-D...there was just D-U-M-B. What's he gonna have next??"

Oy freakin' vey.

:banghead: Let me at him!!!:banghead:

[Knutsonfam]

Hi Kim--I know exactly where you're coming from. My parents' generation just doesn't seem to get it, and my mother is convinced that if we would just throw some pills at him, that would fix everything. *sigh*

My father in law is the worst, though...."SID?? What the hell is SID? In my day, there was no S-I-D, or A-D-D or A-D-H-D...there was just D-U-M-B. What's he gonna have next??"

Oy freakin' vey.

Wow! I'm so sorry you and your lo have to deal with that! How do respond to him? Luckily we don't live very close to my in-laws. Last time we were there, after driving 16 hours with two kids while 5 months pregnant, she says, "Well, it's lunch time but you'll have to make your own food 'cause I won't cook for your kid." So we went to Subway and didn't bring her back any! Hah, serves her right. When we got home there was a big long e-mail waiting in DH's inbox about how insensitive I am. Too bad Too sad for her; I go to sleep worried about it every night. NOT The only thing is that now she says she won't come out and see the new baby. If she won't come than fil won't come and that makes me sad 'cause he's a good guy.

[eileenAKAmommy]

My now 5 year old was diagnosed with SID at an early age, and then right after he turned 3 he was diagnosed with PDD-NOS

[MamaZelly]

Wow! I'm so sorry you and your lo have to deal with that! How do respond to him?

Hee hee... I don't. I go on eating my dinner, or fooling with the kids, or whatever I was doing before the inane comment, as though he never said a thing. He once told my husband that I should get my hearing checked, because I hardly ever respond to what he's saying....:giggle2::roflmbo:

[nrsenadenos]

nicole glad you got a result, what now for you all.
Angie, welcome, your muffin sound precious! It is so funny to read stories here and be like, that isn't normal? :) I have a rocker too. Your last two paragraphs are so true!

We are starting with a brushing and joint compression protocol for the next two weeks.

[MamaZelly]

We are starting with a brushing and joint compression protocol for the next two weeks.


We're doing this too. It has made an amazing difference. After a few days of doing this a few times a day, he started talking. He doesn't speak at an age-appropriate level, but he is attempting to speak, and now has about a dozen vocal words. We've been working simple sign language into the mix as well, so what he can't verbalize vocally, he "says" with his hands.

This is in conjunction with an OT and a Dev. Spec. coming to the house twice a week. We also work with him daily on the yoga ball, spend time with a sensory box (dry rice and beans with toys hidden in the mix), and a net therapy swing.

His behavior has improved tremendously since we implemented a "sensory diet" into everyday life.

[nrsenadenos]

How long did it take you to see a difference? We aren't noticing anything yet.

[MamaZelly]

I just looked back in the notes--it took about 8 days before we noticed anything concrete. It started with simple words, like "go" and "no," then his behavior began to improve by leaps and bounds. No more huge tantrums....he tends to cooperate on the changing table, and he can now follow simple directions, like "get Mummy's sweater" or "put the cup on the table."

We work with him several times a day, and talk to him constantly. We ask questions, try to elicit answers, anything we can think of to get him involved.

[AVDesigns]

Does anyone know where I can find a Child's First Picture Dictionary? I know there used to be a large book with just bunches of pics and the word underneath the picture, but I can't find one like it now. I wanted to work with LJ's speech while we're waiting for his 3 year check-up and evals for OT (sensory) and speech therapies.
Also..anyone have any tips or exercises or things to do with DS in the meantime. SIL (OT) says DH is hyposensative. He likes very rough play. He's still, at almost 3 years old, putting everything in his mouth.

[LisaV]

I would recommend something such as trampoline if he likes rough play. My DS is the same way and we do the tramp and brushing before he has to go places to try and desensities. G is also very oral so making him suck things through a straw is good. Pudding, applesauce, pretty much anything you can think of that would be liquid enough. Sometimes the applesauce is good because it requires more muscle. Also most anything he can suck or chew on. We always have gum or hard candies in the car otherwise G is chewing on his finger nails.

Another activity that we love is wrapping G in a blanket and then unrolling him very quickly. (Must have a large area for this) Just grab the end and pull up or out.

We also love taking larger pillows (we use our dog pillows) but holding them up and having G run into them or making him try to push us over.

Usborne Books has a picture dictionary
http://www.ubah.com/ecommerce/details.asp?sid=B1306&gid=72754435&title=Very+First+Dictionary&sqlwhere=submit%3Dsearch%26search%3DDictionary

[AVDesigns]

Thanks so much for the tips. LJ LOVES gum. Funny you mentioned nail biting, because I've noticed LJ biting on his nails more often lately. I need to find a trampoline. Maybe for his birthday we can get him one. Money is sooo tight right now. I'll have to make some pudding and get some applesauce and let him suck those through a straw.
Thanks again..and thanks for the book recommendation. I'll plan on ordering that for him for sure!

[LisaV]

No problem. Yeah it has been 1.5yrs since I have had to cut a nail on G. Let me know what you think of the book. I may look at getting it here also.

[AVDesigns]

well, I ordered that dictionary book. He'll probably get it for christmas but I'll let you know how we like it.

Oh..and DH's aunt is giving us a trampoline. It's a full size trampoline that she got at a yard sale for my DDs but they don't get to visit as often because of her work schedule so she said we could get it to bring home. I just have to find the padding that goes over the springs. She said that part was worn out so they tossed it. I'm excited. LJ loves the trampoline and it'll be good for him.

[vintagegyrl]

Hi,
id love to drop in here.
We think 4.5yo DS has this. I am SOOO relieved we have finally realized this is what it is. He is going to be referred to a counselor. I am SOOO glad. life has been very difficult with him. I haev 2 other younger children, too so life is pretty demanding. All this time, I thought it was just how kids were but I knew my DS was so different, it was so hard to explain to people. they think u are just over dramatizing everything when u tell them.
I can wait to read all the pp!

[LisaV]

Welcome and I am glad you are finding help. It has been a life saver for us and also nowing that we are not alone.

[MamaZelly]

It really is hard when you know something isn't right, but nobody takes you seriously. No matter how you describe life with this child, you get the same semi-blank, are you serious, why do you think this is a problem kind of look....

I'm so glad you found some help. Sensory and occupational therapies can make a world of difference, and it happens pretty fast. A week after starting therapy with Gus, we were living with a different child. That isn't to say he doesn't have rough days, or that he's "cured," but life is much much easier.

Let us know how he progresses--and what is working for you. You may stumble upon something that the rest of us don't know yet!

[vintagegyrl]

thanks, this is all new to me but the more I read about it, i think i may have it too to a slight degree...
anyway, ODS is the one we are checking out. not sure about YDS yet since he is only 2 but they both have thier issues. ODS cant handle loud noise, crowded rooms, going to the grocery, - and as DH puts it - we have transition times longer than the space shuttle. We have recently cut out TV and this has helped. I read to him a LOT. we read for 1 1/2 half at least today. The weird thing is he does not like to be away from me. it is very exhausting and he follows me everywhere. I see YDS doing this now, too so I dont know if it is a learned behavior or what. ODS will not go play outside ever by himself, and sometimes it is a sheer fight to get him out with us all together.
any time we have to go somewhere where there are kids I get worried about how DS will handle the situation. he gets very angry and its hard to bring him back. We want to start a new MOPS group but I think maybe we should wait til he is in therapy a bit. I really let my kids do a lot of what they want. YDS is obsessed with gloves and has to wear gloves all the time when he is playing. He also puts on ODS shoes and everyones shoes, but this is a normal 2yo behavior i think. YDS also is weird about pants and will only wear sweatpants. he's in underwear during the day and refuses to wera a diaper at nightr tho hes not PL'd. he is obsessed with his baby sister and wont leave her alone. He is my cuddly one, ODS is not. they are SOOOO opposite to the extremes.

anyway, thanks for lettin me share. looking forward to getting help!

[amyk0202]

So, I'm so excited. Ds2 ate some salad last night! He has major food issues & the only things he will eat are bread & cheese (in various forms), & pasta (with spaghetti sauce only if every single inch is covered in cheese), hot dogs, & french fries. I do lots of carnation instant breakfast & flintstone vitamins for him because it's the only way I can get anything resembling a vitamin into him. Last night we were having salad & he had a grilled cheese sandwich & he actually asked for a salad with lots of cheese & I saw him eating some lettuce. He ate some of the carrots too once I told him they were salad carrots. I've given him salads for years & he just does not eat them. I'm hoping that maybe we can finally add something new & nutritious to his food list.

[LisaV]

vintagegyrl.
I know it can be frustating but hang in there. Hopefully you will see some changes with therapy. We always notice a change when G is getting too much tv and we cut him back. We also do a reward chart where he chooses a "prize or reward" that is big and then everyday that has been a good day he recieves a star. This goes right on the fridge so he can see his progress.

As for going out I have even seen children wearing Headphones to block out the noise in town. It looks a little silly at first but whatever works I say go for it.

Amy:
I am so happy that DS ate some lettuce. What a huge step :)

[vintagegyrl]

vintagegyrl.
As for going out I have even seen children wearing Headphones to block out the noise in town. It looks a little silly at first but whatever works I say go for it.

ohhhhhhh! So that is what they are for. Ive never seen them but my friend who has a son with SID & Autistic said she had a pair that we could try. I didnt know what she was talking about! I thought it was a listening program or something. :giggle:

It's OK, i dont think it would bother me. LOL. my son is a little "different" now we REALLY notice it and I am sad to say its a little embarrasing, but that's just who he is.
lately, he has all kinds of quirks. It used to just be that he was LOUD. now he pulls his pants up really high, pulls at his shirt collars, and wipes his mouth/ picks his lips til they have scabs, and has incredibly bad breath because we think it is that he doesnt drink enough water... i hate to complain about my kiddo, but its getting really hard.
Now I notice strange things about my younger DS but maybe he is just following big bro and has his own quirks. but my kids are hilarious and crack us up - they have great senses of humor. :giggle2:

[LisaV]

There is a listening program that my son has gone through also and it did wonders for him. He may have to do it again in a few months or year but we take it all in stride.

Complain away. We know that we love them for who they are and wouldn't change them for the world but sometimes you have to get these things off your chest. I understand. There has been times when I have no one to talk with so I come here and express my frustrations and I know that I can get the support that only other parents with similar children can provide.

[AVDesigns]

ooh I like the headphones idea. DS always pitches fits when we're in a store longer than 10 minutes. I'm not sure if it's just the crowd or being away from home or what? His eval will be scheduled at his 3 yr. checkup the end of January to see if in fact he has sensory issues. I think I should get an mp3 player to carry in the car for grocery store trips and try them out. Download some fun kid songs on it for him.

[LisaV]

Also if the music doesn't help even getting those earphones that block out noise so it is less intense may work. We use those occasionally when going to crowded areas or parades so DS doesn't freek. We are going to a rodeo in Jan and I will bring them along incase the announcer is too loud. Good luck.

[princesshannon]

So, I'm so excited. Ds2 ate some salad last night! He has major food issues & the only things he will eat are bread & cheese (in various forms), & pasta (with spaghetti sauce only if every single inch is covered in cheese), hot dogs, & french fries. I do lots of carnation instant breakfast & flintstone vitamins for him because it's the only way I can get anything resembling a vitamin into him. Last night we were having salad & he had a grilled cheese sandwich & he actually asked for a salad with lots of cheese & I saw him eating some lettuce. He ate some of the carrots too once I told him they were salad carrots. I've given him salads for years & he just does not eat them. I'm hoping that maybe we can finally add something new & nutritious to his food list.

:thumbsup: yea mama!

i think we are actually regressing back in food choices...ds won't eat now what he would eat a month ago...AGHHHHH! i am exhausted with this process...

salad is a big step with the different textures and flavors, plus it is cold and a little wet! wow!:thumbsup:

[vintagegyrl]

Does your LO want u to play with them ALL the time?
It is so frustrating because I feel like I am not giving him enough attention. But what is enough for a SID child?? I am still waiting for the hospital to call to get the referral appt going... ugh! So I have millions of questions. sorry.

[TieNappyQueen]

Ok I am wayyy behind we were home on leave for a month and I have to stop buying diaps!!!!! MUST STOP THE MADNESS!
E is now on three days a week three hours each time. Speech, PT and OT. It is doing wonders for him. We decieded that we are going to unschool or relaxed HS him since we would have had to sign him up soon for preK and that isn't happening! I got him these handlebars at IKEA to switch out with his swing while home and LOVES them. Mom and dad got him a tramp and that is helping as well.

The headphones I HIGHLY recommend! WE have to watch him really close because he wants it as LOUD as it will go but we found after his audio therapy that the headphones work wonders all the time. He has two CD's Johny Cash and the Appolo mission recording, LOVEs them!
Off to see if I can catch up.
http://i175.photobucket.com/albums/w158/Namaste0427/IMG_4267.jpg

http://i175.photobucket.com/albums/w158/Namaste0427/IMG_4268.jpg


DOn't mind the hammer pants. Two years ago asked my grandma to knit him some longies, sent her some NICE yarn, and a easy pattern, THOSE are what I got back! We still have no idea what happened to the yarn and the pattern...

[TieNappyQueen]

Hi,
id love to drop in here.
We think 4.5yo DS has this. I am SOOO relieved we have finally realized this is what it is. He is going to be referred to a counselor. I am SOOO glad. life has been very difficult with him. I haev 2 other younger children, too so life is pretty demanding. All this time, I thought it was just how kids were but I knew my DS was so different, it was so hard to explain to people. they think u are just over dramatizing everything when u tell them.
I can wait to read all the pp!
Yep I know what you mean!
It really is hard when you know something isn't right, but nobody takes you seriously. No matter how you describe life with this child, you get the same semi-blank, are you serious, why do you think this is a problem kind of look....

I'm so glad you found some help. Sensory and occupational therapies can make a world of difference, and it happens pretty fast. A week after starting therapy with Gus, we were living with a different child. That isn't to say he doesn't have rough days, or that he's "cured," but life is much much easier.

Let us know how he progresses--and what is working for you. You may stumble upon something that the rest of us don't know yet!

GREAT POST SOO SOOO TRUE!

Also wanted to add that we got the eval that got him qualified for PT and even though I know why, to see it on paper in black and white and so straight forward was heartbreaking.. I am glad that he is getting help but still, he is my baby always in my heart.

[~Peach~]

I just happened upon this thread and wanted to jump in. My dd Kaylen was diagnosed SID at 18 months of age. At 6 1/2 she has improved vastly in areas of speech but we are still having issues with her comprehension which is frustrating to me. We have had her speech therapy within the school district for going on 4 years and this is the only problem that is still apparent.
I've also noticed she tends to alienate other children her age by saying things that are "off". Not off like rude but something that other ppl would say is strange. I worry about this as it seems to be affecting her making friends and a few of the kids in her class tease her about it sometimes. So what would be a solution to this? I cannot figure out a way to tell her that is gentle and that she will comprehend. As it is she really has no friends outside of school (older dd has a few friends that she goes over their house and all) and I am thinking this may be why.

[LisaV]

Welcome Peach. I am sorry I don't have alot of input for making friends. Usually we have the problem with G being so rough that parents I think don't want him always around their children. I believe that when she meets a true friend they will click. I have a niece that has some speech concerns and her peers have a hard time understanding her. She has found one friend that accepts her for who she is. Continue to give the love and support that you have been.

Tienappyqueen I love the new rings. we may have to find something like that.

I am starting to worry that DD is showing similarities to G concerning the sensory seeking. She loves hanging on bars and crashing along with difficulties sitting still. We went to a program and she was so indepent compared to the other children her age. They were content with being quiet and held while DD was running all over. At least I can try some early intervention tecniques with her. Have a happy and safe holidays everyone.

[vintagegyrl]

DOn't mind the hammer pants. Two years ago asked my grandma to knit him some longies, sent her some NICE yarn, and a easy pattern, THOSE are what I got back! We still have no idea what happened to the yarn and the pattern...
I just had to say :roflmbo: :roflmbo:

[vintagegyrl]

Also wanted to add that we got the eval that got him qualified for PT and even though I know why, to see it on paper in black and white and so straight forward was heartbreaking.. I am glad that he is getting help but still, he is my baby always in my heart.

I understand that... the day I got the OK for the referral - I thought - "something is wrong with my child..." :blush: but im glad were gonna get help...