SID- Sensory Intergration Disorder

Updated on December 08, 2008
J.S. asks from Las Vegas, NV
14 answers

I am wondering if any of you moms have had experience with Sensory Integration Disorder? My 3 year old son has been recently diagnosed and I know is what I have been reading. We don't get back into to see the doctor to start occupational therapy for 2 weeks and I am having a very hard time controlling my son at times. By that I mean he becomes so rough and violent I don't' know what to do. He gets so worked up you just about have to sit on him to get him calmed down. So if anyone has any info please let me know.

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So What Happened?

Thank you for so many of your responses. I have made an apt with Child Find for the Clark County School District and we go on October 24 to have him evaluated. I am just glad that I am not alone with this and others have made progress with their children.

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S.R.

answers from San Francisco on

The main thing here is that so many Occupational Therapists that are provided by the school district only concentrate on the skills that are "necessary" for classroom activities, like cutting with sissors. But, the problem is systemic. It is wide and deep and requires working with the gross-motor systems, the whole body. If you skip this, the learning problems and sensitivities will continue way into the later school years. If you get on it now, a lot of things will resolve that would otherwise affect reading, math, socialization... You're lucky that you got this diagnosis early. Get him out and running, jumping, log roll him in a sheet or outside when the weather gets warm. Big movements, Bear walking, crab walking. Spinning. Lots of spinning. Don't give up. This is a resolvable issue(s).

Think PHYSICAL...ACTIVE...BIG PHYSICAL MOVEMENT.

Get a mattress for a water bed. Fill it with air, but not all the way up. Get him to walk/play on it every day for 30 mintues. It will "off-balance" him and he'll constantly be righting his balance.

Also, Tomatis sound therapy will impact his vestibular system which is the physical center of SI Dysfunction, regardless of how it manifests.

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T.

answers from Las Vegas on

J.,

Unfortunately, I know quite a bit about Sensory Integration Disorder (SID). My son is almost 4 and he has autism. If you've been doing research you've discovered that Austism Spectrum Disorders and SID tend to go hand in hand. If you are in Las Vegas, I'd highly recommend that you contact Child Find at ###-###-#### or ###-###-####. Child Find is part of the Clark County School District (if you are somewhere else, you should have a similar service and could find it by calling one of your local schools). The school district will evaluate your son and give him an IEP (Individual Education Plan) and provide services FREE OF CHARGE. My son is in an autism classroom 6 hours a day, 5 days a week, 220 days a year (which does help with the childcare bill!) and he's eligible to be bussed to and from school (for free also!). They also have other types of programs too so you could potentially get services even if they decide your son isn't on the autism spectrum. And, before your eyes roll back in your head and you faint I want to offer you a big hug. I'm not saying your son is autistic because there is no way I'd know that. And I do know from experience that the word autism is not one you want to hear in the same sentence as anything relating to your child. But SID is NOT a good sign but there is SO INCREDIBLY MUCH you can do to help your child once you wrap your brain around it all and get started. No one thing works for every child but there are dozens of things you can try.

If there is anything I've learned in the last 2 years it is that you want to access all of the free services first and then supplement from there. Services that you pay for are extremely expensive. We are paying $120 an hour for private speech therapy and I'm currently researching OT and it averages $165 an hour!!! I don't know about your insurance but mine won't pay for anything "developmental." I can't even begin to explain how much the school district program has helped my son. We are still doing lots of other stuff ourselves but we would have a very hard time replacing what we are getting through the school district. Their preschool program seems to be really good. I'm not sure I'd be nearly as happy if he were older but the program for the little kids, in my experience, has been excellent.

In the meantime, look for a book called "The Out-of-Sync Child." Here is the amazon.com link http://www.amazon.com/Out-Sync-Child-Recognizing-Processi...

It will help you make some sense out of your son's behavior. Keep in mind that with a child who has SID, most of their misbehavior isn't misbehavior. There is always a cause (or a trigger) even if you don't know what it is.

What specifically you can do really depends on what sensory issues he has. With my son we either avoid sensory triggers or work on desensitizing him to certain triggers depending on what the problem is. We also give him what is called a "sensory diet" (which has nothing to do with food) to help him deal with the sensory overload. I'd be happy to bounce ideas around with you if you are interested. My direct email is ____@____.com. I've learned a heck of a lot in the past 2 years and I'd be happy to help in any way I can.

Also, FWIW, if you do find out that your child has autism, it will feel like the end of the world but it isn't. He'll still be the same child you love with your entire being no matter what label they stick on him. Autism is a journey and not always an easy one but it is much easier to deal with than the uncertainty we dealt with before we knew what we were dealing with.

My son was really out of control too until we figured out what we were dealing with and started dealing with it. We got all sorts of "helpful" input from friends, family, perfect strangers. We have been accused of abusing our child and spoiling him (by my mom, actually in the same conversation - what the f*c*?) and we get dirty looks from people all the time when we are in public and he starts up (he has a hard time with flourescent lights, crowded places, some types of noises, etc.). All bets are off and all of the conventional "wisdom" doesn't work when you are dealing with a kid with severe sensory issues. You really have to learn to work with the sensory issues and around them and once you figure it out, life gets so much easier. I can guarantee you that my son is neither spoiled or abused. It can be really overwhelming though. You will find that other parents are your best resource for information.

You may also want to look at autism websites. Since SID is so common in kids with autism, you'll find a lot of resources that will help you regardless of whether your child is autistic or not.

Just for some background, my son has sensory issues, some behavior issues (much of that is sensory based) and language delays. He's about as far from what most people think of when they think "autism" as you can get. He's incredibly engaged, incredibly social and loves other people and kids. But he's still on the autism spectrum. And in our case, that isn't necessarily a bad thing - he gets way more free services than he would if he had received any other label and either way, he really is the same kid....

Seriously, email me...

T.
____@____.com

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T.K.

answers from Sacramento on

I am a mom of 7 but we did fostercare for 7 yrs and one of my friends who also did fostercare has 2 children with sensory intergression, we had one in our home for a short time, but my friend gave me many tips.

one is brush therapy...get a soft baby brush and brush their skin (not hard)all over on their back,legs,arms
massage also

another thing she does for her son is she has these big sand bags she got at a physical therapy place and when he starts getting out of control she throws one right after the other on top of him

they have sensory issues and it effects how things feel by doing all these things you are stimulating their nervous system it sounds weird but it does help. If you want to talk or want more info you can email me at ____@____.com

I hope this helps

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C.C.

answers from Fresno on

wow.
he needs these cards which he uses to talk to you, ask you questions, answer questions, etc. get some! because he has sid he can't formulate thoughts and ideas like we do. the picture cards will change everything. he is probably very bright and wants to communicate with you. because he is so frustrated he is agitated.
research it on the internet. get on craigslist and run an ad.
meet other parents of kids that have sid. they will give you all kinds of support and ideas and help.
get involved with an organization that works with special needs kids who can help you and provide more education. in fresno, ca. we have exceptional parents unlimited. they do this kind of thing.
good luck J.

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S.G.

answers from Las Vegas on

Hi J.-

My son will be 3 in October and we found out that he had Autism on his 2nd birthday. He is pretty high-functioning, although a big part of his problem is "Sensory". We have him going to an Occupational Therapist and have gotten alot of help through NEIS. Our son needs alot of roughhousing and swinging and tight "squeezies". If you give him "input" on a regular basis, he will improve. I have made and purchased so many things to help our little guy and would love to share more ideas and information with you if you would like. :-)

Good Luck and let me know if you need anything-

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N.P.

answers from Sacramento on

hello. my name is nikki. i have a lot of expierience with this disorder. my youngest brother wasnt diagnosed with it until he was about 6 years old so we could never understand what was going on with him. when he was a baby he was in the hospital most of his first year because he just screamed uncontrolabley and they never found out what was going on. my mom realized that there was one outfit that he would wear that he didnt cry in and she was convinced it was because it was yellow so she went and bought all yellow clothes but that didnt work and we later found out it was the material. certain materials on there body will set them off. jordan would only wear silky materials or like polyester but most of the time he prefered to just wear his pull up or underwear. certain noises set him off like vacumes or motorcycles. i also took care of a little boy who had sid also and he had the same thing. he woulnt eat certain textured foods like chicken nuggets set him off. im not sure what they ever did about his disorder because i lost contact when i became pregnant but my brother had an occupational therapist that came to his school when he was in kindergarden a couple days a week and he would have him make things like a baloon full of beans that he could squeeze when he was anxious and fingerpaint it feels good on their fingers. we also had to retrain his senses. my mom had to brush his whole body down in a downward position with this brush they gave her every 2 hours for six weeks and on every hour between then we had to do things to stimulate his senses like play tug a war with a pillowcase that we tied a not in the end of. or pillow fight. Lots of ruffhousing. we did this for 6 weeks and he is completley different now. things still bother him a little sometimes like he doesnt like anyone touching him. the other thing is when something set him off when he was little and couldnt control himself we had to set him on the floor and rap our arm and legs around him to were he coulnt get out and squeez him and talk to him in a calm and soothing voice until he regained control of himself. im not sure how severe your son has this but jordan had the worst case of it and know hes fine so there is hope of helping your little one gain control of his own senses. good luck!

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S.B.

answers from San Francisco on

Dear J.,

I am a physical therapist who specializes in helping babies who have challenges in getting the breastfeeding going well. Sensory intergration is one of the problems that can affect breastfeeding as you may have found. Catherine Watson Genna had a child with this problem and has written much that may be helpful to you in your search for information. If you put her name into Google, you can find her article in the Medela Messenger Issue 19.1 2002. There is another in Leaven, Vol.37 No.3, June-July 2001. pp.51-53.
Best in getting your child the help he needs.
S. www.mybreastfeeding.com

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M.S.

answers from Reno on

Hi...you must read the Out Of Sync Child...Great book with some helpful tips to calm your little one. Simple things that you can do while just playing...swinging is great for them, having them push something, jumping up and down, etc. The book will explain. My daughter, now 8 was diagnosed at 4...thankfully. She is a well adjusted outgoing child now. Good luck!

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R.M.

answers from Sacramento on

I would suggest looking for a local support group and or checking internet as I started an organization for kids with special needs and a lot of them have sensory issues.

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K.W.

answers from San Francisco on

massage massage massage is a great way to keep him calm and help him to grow out of what he has been "diagnosed" with. Please dont let these doctors medicate your baby because it will only make things worst. My younger brother,who i raised, was diagnosed with ADD and so was my younger cousin. my brother didnt get meds and he grew out of it, my cousin got meds and he got worst ecspecially when he forgot to take them. Your body gets dependent on meds if you take them for everything. his body has what he needs to heal himself. Also, good nutrition eating right gives your body the ability to fix itself and there is nothing wrong with your son he just needs some tlc. Also with you being single and him not having the balance of both mom and dad makes him out of balance which is also another reason he may be acting out. He may need someone to talk to to help him express his feelings in a more possitive manner. Also, getting him involved in daily activities that will allow him to redirect his energy into something possotive will help, music, arts, self defence, ect. dont let these doctors run your child, you do what you think is right, doctors dont know everything they only know what they have been taught. You as a mommy know that the best teacher is life so just give life to your son and love him like you have been loving him.

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A.C.

answers from San Francisco on

Hi J.,
I don't know what the clinical explaination of this disorder is but I'd start with leaving the t.v. off.
Will he wear a hat/visor/sunglasses? How about earmuffs or headphones with mellow music? Remove all toys from his room except 2 or 3 favorites at a time. Leave him at home with a sitter while grocery shopping, banking etc. If you need to take him with you put a baseball cap on his head. Maybe if you wear one too he'll think it's the thing to do while shopping. The hat blocks bright lights, visual (perifrial) distractions and a little sound. A quiet warm bath may help him through the late afternoon/early evening times. Sounds like you have a real challenge ahead of you.
Hang in there and continue to ask for help from others.
Ask the doctor to refer you to other parents for a support system. You'll find what works before you know it!
Blessings.
AC

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C.N.

answers from San Luis Obispo on

Dear J.,

If the thing that is giving you a hard time controlling him is when he has tantrum like behavior, then you can know that he just needs to do this - he is just a baby and doesn't understand why he feels so irritated at times.

Keep the lights low, music soft and low, and don't expect him to 'do' what you say. He needs understanding, not controlling. I think that the doctor and people who will work with you and him will teach you how to handle his upset times.

Good Luck, C. N.

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C.S.

answers from Reno on

Hi J. -
My son also has Sensory Intergration. He was a late talker and was referred to Nevada Early Intervention. I thought that he may be austic, but he is not. But, they did find that he had some sensory issues. He worked with a Occuptional Therapist for about a year, 2 times a month. It helped alot. She basicly just showed me things to do with him. Just like the previous Mom said, lots of rough play, tight hugs, wagon wheels etc... If you want anymore info, just email me.
C.

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L.M.

answers from Sacramento on

I would do some research on SID and food intolerances. Since SID is on the Autism spectrum, a gluten-free/casein- free diet might help. It helped my niece tremendously. She was having fits 3 to 4 times per week and was always anxious and irritable. She often had to be help down as you mentioned. She went off gluten (she was already off dairy since she was lactose intolerant--common in people with gluten intolerance or celiac disease) and the tantrums stopped. I had major problems with concentration (AD/HD) and developed a thyroid auto-immune disorder which led me to the study of gluten intolerance and Celiac disease. I am now off Ritalin thanks to my diet change. No more eczema or asthma either! It was all food related!

Does your son have rashes or stomach problems like constipation or diarrhea? Asthma or eczema? Do others in your family have these problems? IBS, Thyroid problems, diabetes, lactose intolerance, any auto-immune conditions? These are common with Celiac disease or gluten intolerance. There are blood and stool tests that can be done to determine if he has the condition and know too that it is genetic.

Jenny McCarthy's books have info on dietary changes and there is a ton on info online.

Here is a good site about the GFCF diet: http://glutencaseinfree.tripod.com/gfcfdiet/id14.html
The article might prompt some questions that you want to research.

Please look into it! Doctors do not often test for it but it is not uncommon. It is believed that 1 in 143 people has Celiac disease and about 1 in 45 is gluten intolerant. People are finding out about the condition from nutritionists. I know many people who begged their doctors for years to help them and the doctors never performed the proper tests.

There are several groups out there to support you. You can usually find them through autism chat groups and websites.
Read, read, READ!!! Hang in there! You are pushing for answers and that is what will help your son and your family in the long run.

Please feel free to contact me if you want to know more.

Take care, L.

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