Kids with AS and SID

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Anyone have a child who has SID as well as AS? My 7 y.o has an assessment with an SIPT certified OT on Monday and I was curious about what to expect? The appt will be 3-4 hrs long but that's as much as I know. Has anyone been through the process already? TIA!

Yep, my child has SID and PDD-NOS.

I'm trying to remember the OT evaluation. It was long, two or three hours. There were a wide variety of tests...copying letters on a sheet of paper, catching a ruler as it was dropped, picking up little jacks and putting them in a cup. The OT did a good job of mixing up quiet tasks with more active ones and leaving a task before D got bored with it.

After the eval, we recieved a six or seven page report that listed his strenghts and weaknesses. This was remitted to the insurance company which than authorized therapy. D worked on "The Listening Program," practice with fine motor skills, and what's-it-called---learning where his body was in relation to other things. He enjoyed the therapy for the most part...it taught him some practical skills (such as tying his shoes and holding a spoon correctly) and his skill at knowing where his body was improved but he still has real issues with noise.

Let us know how the eval goes!

BeeBee

My daughter has Sensory Integration Dysfunction, but not AS. She has been diagnosed with another ASD. The evaluation was long, but they kept it fun for her. She must have been younger than BeeBee's son because her test was a little different than his. She was five, so BeeBee's son's evaluation will probably be more like your son's than my daughter's was. They played fun games with her and asked me tons of questions.

She has difficulty with proprioception and sensory sensitivity, including sight, touch, sound, smells, tastes and textures. She loved the OT, because it was like play in the most amazing play place ever. I was also given a sensory diet for her for home, which I followed.

Yes, D was ten at the time. And there a ton of questions.

proprioception! That's the word I was looking for! Thanks!

BeeBee

Have you seen the book The Out-Of-Sync Child? I think it is pretty good.

No, I haven't. I know it comes highly recommended.

I'll need to get a copy in the spring...right now things a bit to hectic to be starting a new book.

BeeBee

Thanks for the insight! I'm really looking forward to the appt. He's been doing play therapy for the past 7 mos and loves it. It's really helping with his anxiety and I find that what he's learning there is easy to put into place at home.

But school is a huge, huge struggle for him right now. He's only going half days and then they give me work to do with him at home because he simply cannot function in the classroom. Too much stimuli. We have to have a firm diagnosis before they'll make accomodations. His SID assessment is on Monday and then we have an appt with the neuropsych in March.

His psychotherapist (who does the play therapy) strongly feels he's presenting as AS and so does my Uncle (who's an educational psychologist) but we've got to get the diagnosis on paper. It's so hard to watch him struggle as much as he is. Every day he tells me he's going to "try harder to do the right things" and I keep telling him that I know he's already doing the best he can and that's enough. That we'll figure it out together. Breaks my heart.

hi,
how did the evaluation go? i wish you well...we have a daughter who is 12yrs old, diagnosed last year thru OT w/ SID. she was also tested for AS, but didn't really 'qualify' in the AS area...i guess she has enough eye contact, enough socialization skills etc... but i strongly feel that she is on the 'outer edges' of AS. she has great difficult with behavior these days...that is our toughest challenge. we also have a sensory diet that we do, and it's become more and more difficult to keep her on that regimen. at first it was a lot of fun for her because it was all new...i've tried adding different activities and equipment, but it's still difficult. the therapist thinks that it's due to her age. soooo we just keep trying. she has difficulty in school too. in the mornings it difficult to get shoes and socks on...when she is in school it does get over stimulating for her. our school system has been wonderful to adapt things for her...her locker is in a corner so she doesn't get pushed around...they've made accomodations for her in gym so she can sit out from an activity that includes contact....she is extremely bright and does very well in academics because she is OCD about it all. but her anxiety levels are sky high...the school has allowed her to hand in homework or schedule tests...spreading things out for her if she is overwhelmed. the most difficult part of this all was getting the professionals like OT, psych etc...in contact with school to make the accomodations, but once they were in place it's been working pretty well.

ok i'll end here...don't know if i was of any help...but thought i'd write because i've been searching for others w/ similar symptoms to our daughter, w/ the SI/AS dx...and it's been a little difficult to find the combo. have found more plain AS or autistic/ADHD... wish you well.

Thanks for thinking of us sunsetsoftie! I don't know who's more tired after yesterday's evaluation....S or me. LOL The OT really worked him hard but boy was she worth the 2 hr drive!

One thing that came as a shock to me was his fine motor skills. I told her he was right handed but did everything else with his left hand. So she did some exercises with him and then pointed out that his right side is really weak which is why he chooses to use his left and if continues to do so, his right hand will never get stronger. So she had him do some tactile things but he had to put his left hand "in jail" (behind his back lol) and only use his right. He REALLY struggled with that! Now we have to do some exercises that help him cross the midline so that both sides are equally strengthened.

I've got a basic sensory diet to begin with. I asked her for a formal report so that I can give it to the school and so that everything is clear to me. We started the brushing (5x daily) and deep joint compression.

We need to work on some socially appropriate things to fill his need to seek out smell (he smells absolutely everything he comes into contact with) so she's going to send me a recipe for koolaid playdoh. I'm also going to make him a weighted blanket because he loved hers.

So much to do. My brain is swimming. He was a mess before the appt. His anxiety was so high that he was losing it over absolutely everything. I couldn't even breathe in his general direction or else he got really angry. That part was tough. So we kind of had it out at one point (he yelled at me, I yelled at him and then we both cried and talked about how we could have handled it better. Sigh.) But after we came back home he was completely settled down.

Next on the list is our appointment at the hospital for his assessment for AS. I would be shocked if it didn't come back as AS given that so many medical people that he's dealt with all agree that's what they see, but we need the firm dx.

Now I'm off to try and figure out how I'm going to fit in his sensory diet with a baby, diaper changes, breastfeeding and school. Holy smokes. The OT said to me "You're not going to have a life for awhile" and she's right. LOL We're going to go back for a follow up just to see how things are progressing. I'm looking foward to what she has to say in the report. She was very intent on making it pro S so I can copy it for the school. Yay!

She really knew her stuff and was extremely thorough. She got down to his level and really engaged him and he loved it. To others, S would appear hyperactive or out of control, but what she saw was a little boy struggling to make his body adapt to the outside world and she loved his spirit. That's nice to hear for a change.

hi! so glad to hear that the eval. went well...yes, they do enjoy the OT's, don't they? their setup is awesome, and the children think it's so much fun to go there...it sure makes it easier to take them somewhere that they think is a 'neat' place!

sounds like she has you on the right track...good luck to you! we found that after consistently doing some of the activities like brushings, we were able to cut back on them a little and maintain her level of functioning. the activities worked great...other things i've found that worked and she says that it felt good and helped: when she has a meltdown, putting a really large pillow on top of her starting below her shoulders, lengthwise and gently lay on top of her (without squashing her too badly or compromising her breathing). it sure helps her to settledown and she says that the pressure feels great. while out shopping or in a crowded noisy restaurant (even before going in) i do some of the deep joint compressions. it helps her to organize the sensory input and/or decrease her anxiety. we also try to do her activities before starting homework which helps a lot. one last thing...she REALLY dislikes going shopping...crowded noisy malls are not her most favorite place to be. however there are times that we need to be there, so i've found that making a scavenger hunt list for her helps a LOT. i list things like: find 3 pairs of plaid pants...4 green mittens etc...you can make up all kinds of things...even funny ones...and they have a good time (even her siblings join in the fun)...leaving me to shop in peace without her constantly pulling on me begging to leave.

if i think of anything else that we do that works i'll leave a note for you. take care and good luck!
sheri

She sounds like a winner. And I know exactly what what mean about hearing the good for a change. My older son is not PDD but is ADHD with anziety and depression. Every parent/teacher conference was the same...out of control, not trying, doesn't listen. Finally we found a teacher that fit. This teacher discussed how hard he tried, what a charmer he was, how full of life and humor...I kept waiting for the "buts" to start and they never did. I almost cried after the confernence.



I'm sooooooooo glad you found such a good fit. As you said, worth the drive, I'm sure.

BeeBee