i am trying to find chat room or someone i can talk to about sensory integrated dysfunction my four yr old has finally been diagnosed i always knew something was up with him and finally got the doctors to listen to me. i now understand alot i just do not know what to do about all of it if someone can please help me i would greatly appreciate it.
Re: sid
yes i have the book it has answered many questions as well as brought up new questions
for instance it says it is not a medical problem how can this be if it is a neurological deficit?
i am learning how to help him somewhat but i also have a three year old that doesnt understand why she cannot play with her brother, why touching him causes a screaming fit i spend more time getting on to her for bothering him[ trying to play] it is a daily battle that wears me out. and i fear she is feeling like the unloved child.
i do not know what to do.
Re: sid
Hi Missy,
I don’t know of any chat rooms for SID, but I remember coming across a bulletin board awhile back that was specifically for SID and I remember it had some good information. You might be able to find it by doing a google search, or the next time I have extra time I’ll try to find it.
In addition to the “Out-of-Sinc Child,” there’s another book you should probably get which is the “Out-of-Sync Child at Play.” It’s full of therapeutic sensory games that should help with your son’s sensory development.
Sibling relationships are often difficult, but LD’s can definitely add an extra layer of difficulty. Eventually your daughter will realize what type of play she can, and cannot do with her brother (things that don’t overload his sensory system). I wish I could be more helpful. Really the best thing is to read and work with your son as much as possible. Maybe even have both kids participate in games that will help with your son’s sensory issues. Playing on equipment, hanging on monkey bars at the park, playing in sand, etc…
another good book that you may find useful
Is called the Child with Special Needs; by Stanley Greenspan, MD and Serena Wieder, PhD
It talks about discovering each child’s unique strengths, developmental capacities and Challenges. It really gets into the floor-Time approach which is a naturalistic way to teach children language, attention, engagement, ways to express their feelings and ideas. The floor time approach is a play based therapy which may help you at this time with your child.
Feel free to communicate with us about certain issues you have, perhaps we can help you by listening and sharing things that have worked for us with our own children.
Perhaps you can spend more time interacting with your daughter, giving her one on one time when Dad is home to help her deal with her frustrations. Does your son like a pressure or weighted vest? Does he respond to soothing music? There will be key things that will help calm him when he is overloaded and it will take some time to figure that out.
Take care!! :)
Re: sid
I know several children of different ages with SI, and they have all responded beautifully to Occupational Therapy. You need to find an OT skilled in this area, but the right therapy can really make a difference.
Siblings
I think that telling your 3 yr old often that some people do not like to be touched, that her brother doesn’t like to be kissed, etc.. might help. Explaining this while she experiences his reaction to her should be a valuable lesson.
I have a similar situation (5yr old mild DSI and a 3 1/2 yr old), it is amazing to me how much she (3yr old) already understands him (5 yr old). I think that my explaining his needs to her will go far to teach her about people in general in that she must consider that some people have feelings unlike hers. Likewise, he wil come to know that he can [i]tell[/i] her (not hit, etc..) when he doesn’t want contact.
Wouldn’t it be great if the whole world started out this way? There’d be a lot less hatred.
Re: sid
:shock: THANK YOU SO MUCH FOR ALL THE SUGGESTIONS. I HAVE THE BOOK AND WE ARE WORKING ON THE OT. OF COURSE SSI AND INS ARE FIGHTING US ON IT. TO ADD TO IT HE WAS 3 MONTHS EARLY AND HAS MILD LIMIATATIONS BECAUSE OF IT BUT I THINK THEY ARE MOSTLY RELATED TO THE SID.
BUT ANY WAY DO THEY HAVE A BOOK FOR THE PARENTS?HOW DO U CALM YOUR FRUSTRATIONS? I SOMETIMES THINK I WAS JUST NOT CUT OUT FOR THIS. I NEVER THOUGHT I WAS A STAY HOME TYPE MOM, I AM ADD AND OCD AND ALWAYS HAVE TO BE VERY ORGANIZED, SCHEDULED, TO STAY ON TASK AND A PERFECTIONIST. I DID NOT STAY HOME WITH MY OLDEST WHO IS 15. SO TO EVEN HAVE 2 MORE CHILDREN 1 YR apart TO THE DAY WAS A SHOCK!!! and because of my sons medical condition at the time i opted to stay home not that i have not enjoyed it and i know i will never regret it! it is just so hard sometimes. you never know from one day to the next what he needs, just when you think u have it figured out boom! i try to vent to very few friends but i know they dont understand. unless u are with him 24-7 yoiu really do not see it, he already knows how to hide it from the public if you know what i mean. it just seem likes a normal 4 yr old being difficult, but i know different. i get so tired and worried i am not doing my children justice. gunney starts preschool full time in the fall and trinity preschool part time, i know that will give me a reprieve but im not sure if i am ready to let them go i still feel i hvenot prepared him enough, and i havent got enough time with trinity because gunner needs extra attention any way thank you for letting me vent missy :D
OT & SI
Hi Missy -
Have your child been receiving any OT services from an OT who understands SI? OTs who “get it” are wonderful & can work with you to develop a sensory diet that will help your child & you understands what helps & what makes life more difficult.
The books the other folks recommended, the Out-of-Sync Child and The Special Needs Child are fabulous. One thing to warn you about - a lot of people *only* think of SI as a fad, “something to treat kids with autism” (that’s what our school psychologist said! - luckily we found a school OT and an IEP team who really understood what SI was).
Good luck!
Deb
S.I.
I also have a son S.I. and Autism I have fornd a place you might try. si-challenge.org They are based inDallas TX. but they can point you in good solid directions. My son also recieves ocupational therapy in which the therapist uses copious amounts of si techniques you may want to cntact your Dr. for a referal for a O.T. eval. also is he has speech dificulties a speech eval also. my sos speeks so much better when he gets all the input he needs. I also know about the sibling thing I have a two year old that so wants to play with his bro. so I set up very structured activeties for them to do together and then support them during play. now he seems to get that his bro need his own time to be able to be present with us and he is really doing well about understanding when I say that chris needs his time firstone thing I do for the little one is make sure I envolve him in my sons therapy as much as I can. he enjoys it and it is good for him to.
I hope that is helpfull good luck. You may also want to look into food alergies. a good book to look over is “is this your child” you can find it through most of the big chain book stores and ther is a huge amount of info on the web.
Andrea
SI
My son just turned three at the end of Sept. We recognized a problem when he was four months. At first I thought he was deaf, but I did many tests around the house and waited till he was older to discover that he definitely had something. When he was two I heard the term PDD. After doing a lot of reading online I thought that perhaps he had a mild PDD. Our pediatrician thought I was a moron—a stay-at-home mom who couldn’t handle an overly active child and therefore wanted drugs. I made myself clear that I want therapy! Finally I found help via my state’s early intervention program. They referred me to the University of New Mexico who has a wonderful Autism program. They evaluated my son and decided that he was no where on the autism spectrum, but that he had SID. We were not acquainted with SID, but were ecstatic that he is not PDD-NOS. He began two hours of OT a week, one hour of speech, and one hour of what they called early intervention. We saw rapid progress. What I loved the most was their willingness to teach me how to do activities that all of my children can do and that help my SI son immensely. After moving to Texas, home services were no longer offered and my son was put into the Special Ed program at the public school—where his teacher and the school diagnostician labeled him as moderate/severe PDD-NOS. After 3 weeks I pulled him out. Now, two weeks later, he is beginning to catch up to where he was.
I know this was a long winded way to get to my point, but I wanted to let you know that I know what you are going through. My most valuable lesson in all of this: organization is key!!! Being an organized person can be used to your benefit. Also, there are many things around the home that can be used for OT and for a sensory diet. My son loves flashing balls and balls with different textures. I constantly cruise the novelty toys isle at Wal-Mart. They have stretchy animals, koosh balls, gel splat balls that light up with contact, silly putty, etc. Also, to keep my son from wandering off when in public places or to calm him in crowded places, I use a weighted backpack. Experiment on how much weight to put in and use loved items: small weighted balls, books, snacks, etc. When he sits down, he can go through the items. My daughter is 16 months older than my SI son. She is now getting used to his “differences.” But it took a lot of work on my side. I have found that Fisher Price Little People are invaluable. My four yr old, three year old (w/SI), and 15 mo old can all play with them together. All of us get on the floor and we engage each other in pretend play. Also we tear the couches apart and make courses. They climb and jump and roll around. We even make pretend stories and things they have to do. My daughter loves it because she can be a princess and my son is learning how to socialize and understand play.
And even though my son is not PDD-NOS, I have found some wonderful things in a handbook for high functioning children with PDD. In the back there are cards called “Don’t look at me that way” cards. In essence they read (or would read for our circumstance): “My child has a Sensory Processing Disorder or Sensory Integration Disorder. For more information go to www….” Because we have all been out in public during an instance where our child who looks and generally acts normal melts down to such a degree that people stare. I have even on a few occassions had someone shush my son or make a comment that I was ruining their peaceful lunch. And while these moments can be hurtful or humiliating, they are truly a result of people’s ignorance and education is the only way to battle ignorance.
Try finding the The Out of Sync Child. I gave my copy away and can’t remember the author but I am sure you would find it helpful.
Beth