Another SID Member

[gemanda]

I'm trying to come onto OUAL more and more, so bear with me if I'm not around a ton, but I definitely wanted to stop in and say hi.

Our daughter Alyssa will be 9 months tomorrow and has had a whole host of issues since a very young age (in utero, to tell you the truth). She started out with a ton of gross motor delays due to muscular issues like torticollis, hypertonia, and hypotonia, and she has overcome most of those with tons of PT and hard work.

However, the real road is ahead of us now...Alyssa officially has SID - Sensory Integration Disorder/Dysfunction/seen so many words here that say the same thing. Her SID is what's causing most of her gross motor delays at this point--her feet are too sensitive to stand on for more than a second or two, her hands and knees bug her with crawling, etc. She's in OT for all of that, and was just ordered into Speech Therapy for her oral sensitivities...she can't handle foods well and is getting worse, so eating is a real chore right now. And bedtimes are an absolute nightmare, she just doesn't settle at all.

Anyway, just a quick introduction for those who don't know us!

[stass]

We have a test scheduled for Saxon on Monday for speech delay with a sensory aspect. It is scary and is nice to have people here to talk to about it. Up until last week I thought he was just late to talk. Now I am learning about a whole new thing. Are they changing the name from Sensory INtegration disorder to Sensory processing disorder?

[gemanda]

I've seen it both ways, Stacey. But on all of Alyssa's evals (done within the last month), it's SID.

[Sparrowbug]

:bighug: This is probably what True will eventually be put in therapy for...and Brynn has this...which is by far more intense than her Autism. If Brynn isn't in therapy, she self-limits food until she is only eating one or two things and then she starts gagging on those things and can't even be in the room with other people eating. It's awful. Have you considered starting a sensory diet...it's used most frequently for Autism, but it helps a ton with SID. It's where you take both dairy and gluten completely out of their diets. It's amazing what a difference it can make in a lot of kids.

I hope that things get easier for her. :bighug:

Wendy

[Sparrowbug]

On Brynn's diagnosis from the Dev. Pediatrician it was listed as SID...but I think some therapists think that parents will freak out if they use the word dysfunction or disorder...so they are trying to change it.

Wendy

[gemanda]

Hey, I know she has special needs and issues...you're not going to get a freak out from me!!

I'll have to talk with her therapists about the Sensory Diet...I've seen stuff about it online, I'm just really nervous since she eats so little as it is. I'm not sure she could live without her Cheerios right now!!!

[Dawn]

Amanda, I just wanted to see how Alyssa is doing. I also wanted to let you know that we were down the same road with our Alexia (now a little over 2 1/2 yrs. old). Her problems started in utero as well....and had some serious SID problems from the get-go (and alot of it we really didn't think anything of it until she was getting evaluated for PT...and they picked up on the SID). She was really behind in her gross motor skills and had hypotonia as well. She didn't/couldn't even eat cheerios until she was over a yr! So she underwent both PT and OT...at the specialized hospital and at our home. We also did the brush therapy on her every couple hrs. (or whatever it was) .Anyway...I can go on, and there's alot of similarities and just wanted to let you know that early intervention helped her out tremendously. Does she still have issues? Sure she does. But it's 'maintained' now and it's easier to deal with as opposed to when she was younger it involved all her senses (touch, taste, sound, etc.). We were so scared at first cuz we had no clue why she was acting in certain ways with touch and sound, and sometimes her body craving input/stimulation and other times her body not wanting it, etc. I've never in my life heard of SID....and when they picked up on it I was relieved cuz I knew at least then she will get the help.

Please PM me or post here if you have ANY questions or need to talk. :) That's wonderful that it was picked up at an early age so she can start getting the therapy she needs. That will help out alot!!!! There is a light at the end of the tunnel!