Sensory Integration Dysfunction

[Asquaredmom]

A couple of lay people have suggested that my now 5 yo may have SID.

I was wondering how folks have gotten diagnosis and treatment.

Pediatrician referral to OT?

Self referral to OT?

Any luck getting insurance coverage?

Have you done treatment at home yourself after training by OT?

How have you changed the home environment to accommadate your child's sensory needs/aversions?

TIA

[MamaMae]

I don't have any experience to share, as I just started to look into this for my 2.5 year old.

Have you read The Out of Sync Child? It's really helpful in explaining SID and whether or not your child might benefit from some treatment. Also has some ideas for home treatment / life changes.

I asked my Primary Care doc for a referral to an OT that specializes in Sensory Integrative Dysfunction. We haven't met with her yet.

I believe that most states have an Early Intervention program that should be funded by the state, for diagnosis and treatment. Is your child in a preschool or school that would know anything about that? As we plan on homeschooling, and DS is only 2 now anyway, I just started to look into this avenue ourselves--hoping to get some state assistance in the process.

Good luck--please share what you find out!

[wemberly]

Elliott was formally diagnosed with SID at 23 months, although I knew long before (around 6 months) that this was the challenge we were all facing. Elliott had a year of 0-3 based intervention. OT 2x a week, Physical therapy 1x per week (to address some of his motor-planning issues) and speech therapy 1x a week to address apraxia and some eating issues (due to texture and temperature sensitivity). We continued with speech therapy and OT, each once a week after Elliott turned three (he's now 4.5). We've implemented a sensory diet at home, with lots of experiences to help calm and/or organize him as needed. We have a mini home-based therapy room for him--a trapeze, a swing that resembles the cargo net swing he uses at therapy, a small tent which holds his bean box (the only way we could semi-successfully contain the beans) a mini trampoline with a beanbag chair or a cloud nine to climb into, a large exercise ball, a weighted vest and blanket, and numerous other regular toys that further our therapeutic aims (a hippity hop, tricycle, lacing cards, string beads, etc)
We've tried a Feingold diet, wilbarger brushing, and listening therapy, all with mixed success. Elliott's neurologist also placed him on a very old school antidepressant after testing revealed that my poor boyo's adrenalin and seratonin levels were sky-high (like he was constantly being chased by rabid dogs). I was reluctant to use medication, but agreed to give it 6 months, and now it's obvious that it is truly helpful--he's much less anxious and out of control at the slightest provocation (the doorbell, a carhorn, a dog's bark all would send him diving for cover under the nearest piece of furniture, screaming and sobbing all the while). My husband and I agreed that if the meds increased Elliott's quality of life, they would be worth it. We've tried lots of other things too, so feel free to contact me, or ask additional questions.

About insurance--the pediatrician was ubersupportive in addressing elliott's needs, and wrote appeals to the insurance company, etc. We did get a few additional visits covered last year, but we were also paying for some things out of pocket, and for that reason certain therapies that we were eager to implement (a social group, and hippotherapy in particular) were tabled until later. I think if you meet with the pediatrician armed with information about SID, she is likely to help you in any way that is necessary, even if it's not something that she sees as a need.

Also, there is a terrific yahoo group for SID. Look for SID_DSI and you should find it. Let's of sharing of great information there.

Let me know what else I can tell you.

Ps--the out of sync child has fun is a terrific new kranowitz book. Great activities in there.--okay, that's it!!

paige, adoptive mama to Elliott

[Asquaredmom]

Zoe was enrolled in a PPI class at age 3.5. She worked w/PT's and OT's, but for very limited lengths of time each week. They gave us a list of suggested activities but did not explain what each activity was supposed to do for her. They and the teachers always seem so busy and it is very difficult to actually spend any time with them to discuss exactly what they are doing, why, and if it seems to help.

I did observe Zoe in class a couple of times and saw that they used a weighted vest and gave her a rocking chair to help keep her at her table when necessary. This treatment was never mentioned to us as something that might help her at home!

DH has pooh-poohed all this to some extent. He has not wanted to try any of this at home.

This is another question, how do you implement this at home? Are there certain activities you steer your child toward when you see him starting to have a problem? Or do you mostly do it as part of his play? Something like "Oh Zoe, you look like you need to jump on your tramp now because I see you're (fill in the blank)"

Thanks for sharing your personal experience and the yahoogroup.

[khrisday]

Read The Out of Sync Child- it will answer those questions.

[Emmas2Hearts]

Elijah has SID and he is 3.. also has Aspergers.

Our insurance did pay for OT and Speech, but it had to be ruled for developmental delay??? I have also heard that our insurance is very rare, most do not cover these services

Elijah has many sensory issues. He first started exhibiting signs when he was about 1-2 years old. His speech was unrecognizable and his body was way out of whack

His major symptoms are:
Very sensitive to loud noises, hides when the vacuum is going, is terrified and wets his pants.

desires forceful touch, very hypo sensitive.

OCD.. chews his cuticles and picks his wounds till they are open sores.

Hand flapping

Chanting

Swings ALL THE TIME... constantly is spinning.

We keep a plastic tool box container with items in it that Eli can "manipulate" when he is in need of stimulation. We have a vibrating chair that he sits in every morning. We do alot of "back pounding" and "joint bumping"...

Elijah is a ball of energy, OT has made a world of difference with him. I do recommend the book The Out of Sync Child. It is a very informative and supportfilled book.

Good luck :)

[LoveBeads]

My daughter has DIS, she's 3. Her case is somewhat mild but it is still "there" if that makes sense. I have been told that one year of OT, twice a week for the first 4 months and then once a week after that should be all she needs. My DD is a little more difficult to diagnose because her symptoms come and go - sometimes she can tolerate a loud, chaotic environment and other times the smallest noise can set her off. She does not have any speech issues either which is usually a first sign - she spoke at 7 months and pronounces things the way a 7 year old would. She absolutely hates being touched, doesn't like noise and has some visual sensitivity as well.

I have a trampoline and a spinning disc type thing which is very difficult to describe. It's not a "Sit and Spin", it's got two levels. I haven't tried any diets yet but I would like to find out more about them if anyone has any info on them.

I went private because I have the very good fortune of living right near Lynn Balzer-Martin who did the diagnosis herself. I have also spoken with Carol Kranowitz (the Out of Sync Child author). Both of them were referred through my pediatrician who knows them well.

I am forced to use OT which is not on my insurance plan since there are very few pediatric OTs and even fewer that take my insurance and none that have any space available. I will submit my claims but since it's out of network, I have no great hopes.

You can go through the county where I live but since I had these connections I decided to just do it myself.

Good luck to you!

[Dianamama]

I'm new to this forum - not sure if I've even introduced myself, but when I found this thread I HAVE to participate!
My DD, Janet is 5 3/4 and has Aspergers and SID. Last year in public school PreK, her teacher told me about Sensory Integration and I sort of blew it off. But Janet learned to read at about age 3. She's smart, funny, caring and clumsy. She is also terrified of the vacuum, the smoke detector, car horns, train whistles... I don't get the vacuum out of the closet when she's home because she panics. When I saw the movie, "Rainman" I saw a few of the subject's actions in Janet. Repeating the same things over and over. Extreme stubbornness about certain issues. So over the summer the school tested her for Aspies and decided on an affirmative. Her pediatrician confirms SI and has prescribed OT. I'll do the OT if the school doesn't cover all her needs. So she is in regular kindergarten classes with some extra attention to see if any modifications need to be made. I can't say enough positive things about this particular public school. It seems to be run exclusively by women, not that that matters but my girl is more comfortable around women with their softer voices and ways. And these women all CARE!
Anyway, I sort of got carried away here, but I need to be in communication with other moms who have kids like this! I can express frustration about the fact that Janet will only wear soft baggy clothes without having to explain that she's not just being spoiled or controlling.
I see there is no spell check here and I don't have a signature yet, but I'm posting this anyway. Thanks for being here.
Dianamama

[jempd]

At his 18-month visit we discussed with our pediatrician ds's out-of-control biting, hair-pulling, face-grabbing. Tried to explain that this was NOT the age-appropriate type of behavior but really out of hand and seemed compulsive. She gave us a prescription to get evaluated through Early Intervention, a city department. They evaluated him and diagnosed him as 'having some sensory issues' and he started speech and occupational therapy at 19 months and at almost three is still getting it along with special education. He will be reevaluated soon to see if he can stay in the public system which will be CPSE (committe for public special education), which is for 3 to 5 year olds. It's free. We knew that his behavior was mostly SID related after he worked with the OT for a short while; obviously some of the stuff she did, especially deep pressure work, helped him. The thing about SID is that it shows up in many different ways in different kids. Unlike kids who can't bear snug clothing or certain kinds of touch, my ds craves strong sensation and one of his behavior problems is that he squeezes up against other kids, can't stop hugging them, etc. ANd yet he also hated the sound of the vacuum cleaner. Go figure.

There are websites as well as books that will give you an idea of the range of things to look for. Also STanley Greenspan books, one is The Challenging Child, will help you to understand what it is and give a lot of good examples of successful play therapy with children with SID.

We are also having him evaluated by a psychologist privately (my insurance pays for 70S%). One of the reasons he's seeing a psychologist (and a linguist specialist and a neurologist) is that we are trying to figure out whether his behavior is strictly SID related or there are other factors. We have accepted the diagnosis that it's at least partly SID. BUt it's hard to tease apart exactly what behavior is caused by what. It's not a simple and straightforward answer I realize, but I hope it helps.

[lauren]

wemberly can you say more about the blood test that tested serotonin and adrenalin levels? I work in the field and have never heard of it and want to know what kind of test it was. My ds might benefit from something like this. Thanks.

[TeddysMom]

I had never heard of the serotonin connection, either. I just googled it and came up with this article, which has additional links. It speaks of a PET scan to detect serotonin levels.

http://serendip.brynmawr.edu/bb/neuro/neuro00/web1/Hollister.html

http://www.angelfire.com/tn3/task/meds.html

[lauren]

Thanks for the links Teddysmom. They were very interesting!

[charmander]

My son was diagonosed with SID at age 4. He was referred to a pediatric occupational therapy place by his school, where he was tested. He attends a therapy session once a week and it has really helped him. He is now 5, we are probably going to end his treatment in a few months.

As far as insurance goes - the OT place told us to get a prescription from our pediatrician, which we did. Apparently, most insurances will not cover OT unless there is a prescription involved. I'm not sure why. Because we got a prescription, our insurance pays 90% of each session (which is $100 bucks, by the way).

Good luck,

cmd
DS age 5
DD age 4.5 months

[neveryoumindthere]

this is interesting..i didnt really hear/know much abt SID till this thread...

so i have some q's if u dont mind,..

is it something in the brain thats 'wrong'? (sorry cant think of the right word)
if so, what caused this? (ie birth trauma? or other things?)

when did u notice your child was 'different'/had different needs?
(ie very young? or when they were toddlers?)

sorry typing one handed so i hope this all makes sense

[LoveBeads]

Originally posted by neveryoumindthere


is it something in the brain thats 'wrong'? (sorry cant think of the right word)
if so, what caused this? (ie birth trauma? or other things?)

when did u notice your child was 'different'/had different needs?
(ie very young? or when they were toddlers?)



There is something "wrong" in the sense that it is not typical but it is pretty correctable in most cases. Basically the synapses fire differently and the brain needs to be retrained. The way it was explained to me, my DD is receiving frontal lobe stimulation in her exercises and that will help retrain the synapses to fire correctly. I am NOT a brain surgeon (LOL) so I hope I'm getting this right but I'm probably not...

What causes it is still a mystery. In my case, I believe it is genetic because I have many of the symptoms of SID myself.

I noticed my child was different at about the age of 5 months. My DD would absolutely fall apart if someone sneezed and she would have a difficult time if we were outside because of the sunshine. It seemed more extreme than the other babies I would observe. From there, I just noticed more and more sensitivities. Again, I think the reason that I noticed it so early is because I have so many of the symptoms myself.

[Doulaluna]

I logged on to the forum hoping to find some help on SID and here it is. Thank you Mothering!!!

My 7 yr old ds has been diagnosed with Asp. However, he has always had sensory issues. Unfortunately we didn't know about SID until recently. Mostly we are getting input from his school (public) OT that most of the issues she sees are SID related and not really Asp. related.

We are having trouble with school right now. The therapists are all great (he has OT, full inclusion, psycotherapy), his teacher thinks that because he is so smart that he is just not trying. It is so frustrating. Especially since her class is so wrong for him. It's loud, disorganized and overall just chaotic.

I am seriously considering homeschooling at this point. Are any of you homeschooling (or know someone who is) your special needs kid(s)? What do you find are you challenges?

By the way, we have been told by our therapists that most schools (and funding programs) don't see SID as a true diagnosis. They beleive that because the diagnosis came out of the OT field and not the psyc field that it isn't recognized very often. Even though my son may have SID, they would prefer to treat him under the Asp. category because he will get funded that way. Otherwise they feel they wouldn't be able to continue his special education (even though he needs it).

Heather

:bf
mama of Indigo 10mo and Shay 7yrs.

[CerridwenLorelei]

I am homeschooling mine.
Vax induced PPDNOS with SID.

I am about to hit our first big challenge-dh company changed ins and they do not cover ot and speech. He graduated from these last year but we are seeing some things that we may need to back to OT for a bit.
The local school is not an option for therapy due to many issues for us

One problem we did have is deciding whether we could do field trips or not -brushing was every two hours.
And originally figuring out his learning style took a bit.

[theatremama]

I was so glad to see this post. After a rather hectic few weeks, we have begun to see an OT for SID for our DS, who is 3 1/2. He has been a toe walker since he took his first steps, we were finally able to see an orthopedist for this. DS did not do well with this visit, so the md wanted him in PT as well because he was so tight the doctor couldn't move his feet at all. (the PT came the other day and was surprised that he could stand flat when he wasn't stressed and at home.) anyway, I had been doing research on toe walking and pretty much figured it was sensory related. Our pedi has been great about referrals and gave us one for the OT as well. We are lucky because our insurance covers ours as well.

I also was wondering what causes this? I can see sensory 'issues' with me, my husband and many people in our family, so my guess it is genetic, but i was just wondering what happens in the brain that makes someone have these problems.

Also, does having SID make a person learning disabled? I was just wondering as far as school was concerned. We have decided against preschool for now because he reacted so negatively to it this last year. (WAY overloaded with meltdowns all day after school and for every day until the next time) I have considered the public preschool since there would be an OT and PT on site, but it is a lottery for non sped kids. I really like the clinic we are going to right now, and I think he'll make a lot of progress there. Would he be in jeopardy of losing this service if he went to school and he had OT there as well? I have worked in schools and know how little time the therapists have to actually do anything with the kids because they have so many kids to service.

I am just relieved that there is a way to help our little boy cope with things better. He is so intelligent, I want him to like school, have friends, and most importantly, like himself.

[lauren]

From my understanding, sid would have no impact at all on learning or learning disabiliities. In fact, my observation has been that children with sid (without other developmental issues at the same time) are often pretty bright. Sometimes children with learning disabilities or developmental disorders ALSO have sid, and so it can be confusing. But my my belief is that the two don't 'cause' each other, just tend to co-occur.

I'm not sure how the school system deals with it as a "diagnosis" that is eligible for special ed services. There is some controversy. For us, a neuologist had to issue a diagnosis "disorder of the nervous system NOS (not otherwise specified)" or something like that, in order to get further services like OT. We haven't pursued special ed under this category yet because we haven't needed to, but I would think it would work for a younger child just entering the system.

I would think that being part of a preschool where there are at least OT/PTs available would be a benefit because the other staff might have greater awareness, through training and exposure, of ways the environment is affecting your ds and ways to help him deal with transitions, overstimulation, etc.

[imkissinboys]

We have had alot of help with an OT who is a Handle Institute trained OT. We play "games" every day and it's been WONDERFUL ( sorry to shout just so happy ). Here are some of the things we do:

Roll Up

Lay a blanket down folded in half long ways. Child lays across and you roll them up in the blanket while telling a story( we do the caterpillar turning into a butterfly but you can make up your own ). Roll slowly keeping them snug ( face not covered ) and gently squeezing all major joints as you go. When all rolled up SLOWLY unroll. This excercise is great for proprioceptive and vestibular. helps with balance and the need to crash into things like the couch or somebody else. Gives them awareness of their body and gives their brain the info it needs concerning touch.

Motrocycle or race car

Child sits on your lap. Your hands are gently resting on sides of their head. So slowly guide their head to move side to side ear to shoulder. First left side then right. never more than twice on each side. More is not beneficial as child gets over stimulated.

Sleepy massage

Child lays on stomach and with a soft ball roll over body starting from fingers on one hand down the arm and over to other arm. Down spine to one leg and then another. Moving ball around as if massaging with it and doing it all very gently. It really relaxes child. proprioceptive help

Wall push-offs

Child places both hands on wall and pushes away from wall as hard as they can. It's great for vestibular and proprioceptive. again giving the body the info it needs.

There are more but too much to type now. All of these should be done gently and only a couple of times each. You might have resistance so try and make it a game. Each exercise should take maybe 3 minutes or less and done a couple times a day. Don't be surprised if child gets sleepy. It's alot of information for them.

My son started these and other excercises about 1 1/2 yrs ago and man it's been great. I was pretty worried when his Sensory intergration issues came up but now feel confident and also I realize it doesn't have to be a bummer. I mean, it's hard sometimes but now I understand him so much more . He's so cool. Can you imagine being 3,4,5 and trying to "get" the world around you? I have enough trouble at 36. :)

Hope this can help. kel

[Kim in NC]

I have recently been told I need to have my daughter checked for SID. She has had problems since birth. now she has tantrums all day, bites, hits, scratches (herself and others) she seems uncomfortable in her own body sometimes...don't know how to expain it. We see her Dr on Fri for a consultation regarding her behavior but not very optomistic as they have so far diagnosed her as having colic at birth, acid reflux at 2 mos and a food allergy also at 3 mos. Now she is 2 and the problems have only gotten worse. Desperate for info and advice.

Kim in NC

[LoveBeads]

Kim what symptoms of SID has she exhibited?

[Kim in NC]

She is sensitive to sounds (a motorcycle just went down the street and she freaked ) she is extremely aggressive to herself and others. She is slower to develop ie fine motor skills, verbal. She tip toes alot, she constantly tells you she hurts or she's been hit when no one or nothing is around her. She's terrified of people other than myself and her father, even people she has seen before. She doesn't do well when new things or people are introduced, she won't eat. She is a daredevil, likes to climb and be thrown around etc. (by daddy) she has extreme tantrums, throws herself in floor, bangs her head into things, kicks and screams etc. Brushing her hair, teeth or washing face is a major task, I am sure the neighbors think I beat her because most of the day is spent listening to her scream as loud as she can. She loves to spin around and is somewhat clumsy. Sorry this is so disjointed but I am rather frazzled today. It has been a rather bad day (Mother in Law just moved in and it seems to have made things worse) and my poor older daughter (3) is at a loss and rather annoyed with her sis...So sorry if I am not making much sense today :confused:

Kim

[imkissinboys]

My son was VERY similar to your daughter. Those exercises I mentioned before helps with that wanting to crash around and tumble alot. The way you described her not feeling like she's in her body ( sorry don't remember the quote exactly ) is perfect. Her body does feel different. We have had great help from a women named Judy Russell. She is a therapist/OT who was trained through the Handle Inst. It's more of a wholistic way of doing things only in that they really look at the whole child ( vision, holding things, diet etc. ) . It's been great. Her buisness is called First Class Neuro-development. She travels all around the country to schools and different clients. I will be happy to give her # if you wish.

It really does get better. Kell

[Kim in NC]

Thanks Kell, the number would be great. I am hopeful that maybe we are on our way to getting some answers but at the same time I am scared and wondering if this has all been caused by the problems during my pregnancy and delivery. That's a whole other story...I feel so bad for my little angel. She really is the sweetest little thing when she feels good. I used to compare her to an adult who was bi-polar. Because she is really up or really down with little in between.

Thanks again,

Kim

[BubbasMom]

Take heart, my 10 year old was diagnosed 3 years ago as SID after several misdiagnosis's and being put on totally inappropriate meds. Once we got the correct diagnosis, and were able to understand his needs he has blossomed into a healthy and vibrant child. He still has his times when sensory issues prevent him from participating in things, but usually only for a few minutes, until his body and brain "connect" with one another.

The best thing we ever did for him though, was music therapy. It has helped him across the board in handling things, and has given him a place to excel.

Now if we could get his writing problems solved, we would be happy campers.

[Nate]

Wow;
I came here to ask if people had experience w/ SID, and here was this whole thread. My nephew (now 8) was diagnosed at 2 w/ SID/tactile defensiveness. The biggest problem at that age was speech (no words at age 2) but he also had very strong food aversions & some other stuff. They were able to do OT for most of the other things, but the food issues persisted, until last fall when his ped. said that something *really* needed to be done about his very limited (& white-food) diet. Basically he eats cereal & sunny delight. (blecch) He also has issues, IMO, w/ lack of empathy, although that could be age-related, too.

They did OT w/ him (insurance & state Early Intervention-covered) from ages 2 or 3-5, when he was mainstreamed into school, and are just starting another round of OT.

The OP may be interested in the last 2 msgs from my SIL...I disagree with most of her parenting style (very reactive, very non-AP), but she's really done a great job working w/ her ds on all this.
-------------------------
2/1/04
The nutritionist's evaluation was that basically we have no critical and immediate health concerns. In fact, she wants me to give him only one-half of a vitamin each day so he does not get too much (apparently these kid's cereals are fortified to an astonishing degree). Granted, she does want him eating more varied things, starting with fruits and veges....but we are going to back off a bit on the food thing and coast as we have been going for a while: cereal for breakfast and lunch, one juice a day, lots of milk, and nuggets & applesauce for dinner.

The speech pathologist said there are no concerns in her area. He chews and swallows fine, and although his articulation can occasionally be sloppy, he does know HOW to speak correctly -- he just forgets sometimes under stress or excitement.

The psychologist was wonderful, & said we have been doing a good job with a particularily strong-willed child under very trying circumstances. I am going to call her later for some alternative discipline strategies ... our current set is gettting stale. Time to shake things up a bit I think. She is making herself available for any help or consultation I need.

She also noted that he is exibiting several signs of anxiety. Granted, part of it could be the evaluation, but when she pointed them out I had to admit that shows them at home too (I had tended to think of him as overly sensitive and somewhat high-strung.) Nothing is going to be done about it at this point though, because of the results from the occupational therapist.

The OT feels that he is still suffering from sensory issues (which could be adding to or causing the anxiety). She cited various incidents which occurred during the evaluation, and is going to recommend that he get some OT, both for feeding and for overall comfort. If after 10 or more OT sessions, the anxiety has not greatly reduced or changed, then we will bring the psychologist back into the immediate loop.

So right now we are waiting for the primary care dr. to perscribe the OT and for the insurance co to ok it, then we can move on it. I am hopeful, and grateful that their first response wasn't to stuff him with pills!! (Although some temporary medication may be brought to bear if we cannot resolve the situation any other way...I am not as adverse to that as I would have been a year ago - discovering how much anxiety I have been coping with all my life, and what it has done to my outlook, and health, was a bit of a shock.)
----------------------------
3/24/04
A general update on Ian may be in order. As most of you may know, the referral from the doctor to the hospital feeding team resulted in another round of Occupational Therapy for him...twice a week at CT Children's Medical Center (CCMC). The consensus is that his Sensory Integration Dysfunction (SID) -- specifically being Tactile Defensive -- is significantly interferring in both his personal and academic life...and more than just in his choice of foods.

But I am pleased to say his therapy is really going great!! It is not too rough on us, since we remember the routines & adjustments we made during the Birth-to-Three OT, so slipping back into that mode is no biggie. And he is loving it: CCMC is a incredible facility, so kid-oriented that it makes ME wish I could be a kid again!

And his school is being GREAT! The elementary magnet school was good for J. but it is being a real God-send for Ian. The teachers of the two highest-sensory-input classes (music & PE) met with us and the school psychologist this week, and are excited about his OT and what we could incorporate into the academic sphere to help him concentrate. We found out about these two trouble spots because of a very involved chart that his regular teacher has been filling out and forwarding to us daily...she is another wonderful blessing in his world!

I will be going in once a week for a few weeks to work pro-actively with Ian before music class and we will see if that results in more focus and fewer re-directions. If it works, the school psychologist and paras will take over...even to the point of extending the proprioceptic pressure (direct calming joint pressure) activities at other high-stress times for him.

The problem with PE stems from the overall amount of sensory input that occurs. Sensory input is cumulative, so a lot of noise plus a lot of visual stimulation plus vestibular (movement/balance) stimulation and tactile stimulation can lead to significant stress for SID kids....even in cases where the problem is 'officially' in one sensory area only.

The PE teacher already is familiar with sensory issues (although somehow she had missed that Ian was a SID kid before this) and incorporating p/p activities into his class as needed will be fairly easy. She has other SID kids in school that she deals with, so she is familiar with what options are available.

In related news, Ian helped make birthday cupcakes for his classmates for Monday (at his insistence -- it surprised me that he would care since that is not one of "his foods"). I included an un-iced cupcake so he would not feel left out. I did not expect him to eat it, but wanted it available just in case. I told him just to bring it home in his lunchbox if he did not want it and I would eat it. (At the OT's insistence, we have completely backed off the food issue for now...they are taking care of all "new food" introductions)

WELL, he shocked one and all by eagerly munching down the entire cupcake! And then at OT Tuesday, he ate a chocolate cake donut hole AND an entire chocolate cake donut!!!!!!! We have heaped praise on him for these oral/tactile explorations.

Other things he is doing: He has started pogo-sticking for p/pressure and is up to 54 bounces at a time. He is chewing gum during homework (only) to help him focus (p/p from the jaw and chewing motions). He uses a neat nubby inflated rubber seat 'disc' which helps him to sit still and concentrate as well as providing pressure. (The school is waiting for the purchase order to go through for one for him there). We are experimenting with various pencil grips, gloves and other equipment to take the discomfort out of writing...and starting a new writing program (Handwriting without Tears) through OT. He got a pair of bouncy "moon shoes" which provide a more portable means of p/p. (for visits to relatives, etc.) as well as a mini-trampoline for his birthday (Which Jess & Phil are just as excited about I think).

All in all, we are making good progress. We keep explaining to him what is going on with him, and that he has to learn to recognize when he is having problems and apply various techniques to calm himself. To get him started, we will all help him realize when he is getting stressed, but eventually he will be able to do it himself. He is aware that the goal is not to "fix" him, but to teach him to compensate for himself.

Also, one of the hallmarks of SID is that sometimes the effects can be inconsistent...affected as they can be by hunger, emotional upsets, being ill, not getting enough sleep, etc. So the set of circumstances they might set Ian off one day may or may not have the same effect another day -- depending on what else is going on with him. And even if both circumstances provoke stress reactions, they reactions may vary greatly. (From simple withdrawal to complete meltdown). It makes life very...interesting. And it makes it even more important that Ian begin to self-monitor and self-compensate.

Well, that is all for now, we will keep everyone informed as further progress is made. Another Feeding Team evaluation is scheduled for 4/1/04 and we look forward to seeing some real positive changes...although he still won't touch meat, veggies, fruit, pasta, bread, etc.

[lauren]

Hi-Can you ask your SIL where she got the moon shoes and the nubby seat thing? They sound like they'd be useful for my ds.

[wemberly]

lauren,

I ordered our nubby cushion from www.bindependent.com (it might be beindependent.com) they were the cheapest around. Amazon used to have the moon shoes, if they don' t you can google them. I've wanted them for Elliott, but at 35 pounds he is too light to get much bounce from them, so that is a consideration if your ds is little.

Here are some other tools in our therapeutic arsenal:

scooterboard/rolling dolly--purchased from a smaller company through amazon--the board was 12.00 ish, but the shipping made it almost double that.

beanbag chair, with washable cover (we bought ours from eddie bauer, but they're widely available)

cloud nine (large bag of foam blocks to crash into--great for heavy work) bought at Southpaw enterprises (a catalog devoted to SI therapy tools)

trapeze, with doorway stability bar--also from Southpaw, but now I'd get one from IKEA--cheaper, well made, and available (but not when we ordered ours)


IKEA offers a ton of terrific set of suspended equipment--we own the teardrop swing, and a rope ladder--they are both terrific, and very cheap 40.00 ish for the swing, and 14.00 for the ladder. We bought ours at IKEA, but I believe you can do a mail order for these items.

My mom also made Elliott a weighted blanket, and a weighted vest--valuable items, although Elliott won't wear the vest.


A therapy ball-- KB toys has the big ones for about 10.00--so much cheaper than the catalogs


A sit-n-spin--easy to find in yard sales and consignment shops

a bean box (we keep ours in enclosed in a play tent--easier to keep the beans contained)


tons of smaller things too, but these are the big items that help with Elliott's sensory diet.


There are lots of OT therapy catalogs available. Here are some that I use or have used in the past:

southpaw enterprises,

pocketful of therapy www.pfot.com

sensory comforts


Someone asked (several dozen messages ago--sorry!) about how I knew that Elliott had SID as a baby. Here are some symptoms he exhibited:

didn't like traditional AP life--no slings, cosleeping, didn't want to be held while eating, etc. He still loved cuddling, and being held, but couldn't stand being confined.


terrible transition to foods with a thicker texture (than formula)and wouldn't sit up to eat for the first few months--he would recline with his head on the edge of our futon for meals that he really wanted to eat--he was a hungry monkey.

and the key, SHRIEKING--in response to too much stimuli. He wasn't in distress really, he just tried to combat the noise in his head by making his own noise--airports, target, the el (in Chicago--our only means of transportation) and of course the grocery store--all prime shriek locations.

There were lots of other characteristics, but these were the main features. Feel free to ask for clarification (and a month later, I'll get around to answering--:rolleyes:

[lauren]

I will check out those links. Thank you!! My son finished a course of OT in Feb. and we are still trying to get supplies for at home work. The most important stuff for him is the stuff for proprioceptive (the crash blocks sound good!) and then bringing down the energy. He used a lycra swing that enclosed him (like a cocoon) at therapy, and the "real" ones are too expensive. I am trying to find lycra fabric for cheap that I can make one to hang from the ceiling. I have seen the swing from Ikea, but it doen'st cut down on the visual stimuli, being open.

Would love more ideas for heavy work, but I'll check out these links first. Thanks again.

[wemberly]

lauren,

Can you velcro a piece of fabric or a towel over the opening of the Ikea swing. That's what we use for Elliott, who loves to go into the cave.

Everyone,
If you haven't joined the SID yahoogroup run by lJaclynn (I'm mangling the spelling of her name I think), you should consider doing so--the files are terrific, and there are some really knowlegable mamas onboard.

[lauren]

Wemberly--good idea about the fabric over the swing. I think the ultimate effect is supposed to be for him to feel the lycra against all body parts (sort of like the body tube effect), but for $40 the Ikea swing might do us for a while.

I was not able to access the other site (beindependent) YOur link didn't work and typing in "beindependent.com" came up with an independent recording label. Any other ideas?

Is there a particular name of the yahoo group. I was doing a search the other day for an SID group and there were so many, I didn't know which one to join!

[wemberly]

I'm in the sid_dsi@yahoogroups group. It's been active for quite a long time, and there is some great information available.

Let me look for the receipt for our move-and-sit cushion. It was SO much cheaper than anywhere else--it's definitely worth finding.

[lauren]

Thanks for the yahoo group--I found it!

[wemberly]

I did some checking and www.bindependent.com is indeed the site I used when I bought Elliott's move-n-sit cushion. Unfortunately the link didn't work for me either--let's hope this is just a temporary issue.

Glad you found the yahoo group.

[Nate]

Info on where my SIL got various things...
-------------------------------------------------
The nubby seat thing is called a Disc O'Sit and can be found at the following site: http://www.specialkidszone.com/Product_Level2.asp?SubCategoryID=70 Actually the special kids zone carries things from Achievement Products, and we have had several helpful items come from there. We recently got something called a Stretch-Eze, which I had my doubts about but decided to try anyway. He Loves It!! It is basically a wide lycra loop that he can wear a variety of ways but provides calming pressure as he stretches against it. Sometimes he just steps into it so it runs along his sides and over his head and feet and stands there smiling.

The Moon Shoes are made by Hart and can be found at www.kbtoys.com for $29.99 plus S/H...but your friend can check first to see if she can find them locally. Our local stores did not have them so I ended up ordering off the Web.

I have also found that the Pilates exercise balls & ovals as well as the massage balls are less expensive at KMART and the like rather than ordering their theraputic counterparts off the specialty sites.

Hope this is all useful...OT continues to be fine. There are good days and bad ones, but we are definately making forward progress!!

[wemberly]

Thanks Nate for sharing that site--I've added several new items to my shopping list.

[LaLa]

I just saw this thread and had to say hello
:wave

I need to go back and read all your posts more carefully, as I just rushed through and haven't looked at the links and such.

Bean's OT is covered 100% by our insurance. She comes to our home.

Bean is not technically diagnosed (I asked that she not be at this stage...based on her age, I didn't feel I wanted her labeled in case she may change with growth)

She has clear sensory issues.

Our biggest challange is poop smearing and chewing.

She makes terrible messes and I am embarassed and dont know who to talk to. I feel odd posting in special needs because she is a smart and healthy child, but she has had some major behavior issues since birth and we are gentle and determined parents so it doesn't make a ton of sense.

She chews through her coats and clothing and hair if allowed.
Through the Occupational therapy we've learned how to talk to her differently and how to see what she is trying to seek out in terms of sensory seeking. That helps us to give her appropriate means to reach those needs, whereas before we were just saying "no, don't chew through your coat" but not giving her a replacement item that was ok to chew on. So that really helped to turn things away from a battle and into a learning environment and a happier one.
:)

She has a lot of food sensitivities too, which I think tie into the poop smearing episodes. She had diaherra for a year straight it wasn't until we took her off Dairy, wheat, gluten, soy, yeast, and peanuts for a month that we finally got it under control! Now she can eat more foods, but it is always a careful line we need to watch.

So while I don't know if she is SID, I know she is sensory seeking and that leads to some of the behaviors that interfere with her life, and it helps us to address them in a postive way.

I really appreciate our O.T.! She's amazing!

She keeps me educated and offeres me brilliant ideas that I just didn't think of on my own!

For bouncing, we got a bounce round and it has been a blessing
:thumb
for chewing, we have some baby toys and some twisty straws that work well.
We have makeshift games and lots of pictorial demos for learning new things.

I am wondering if anyone has read about diet possibly playing a role in all of this?

sorry to go off on tangents. It is good to feel not alone, though...although I know the messes I've been cleaning are not standard for SID children, I think the overall struggles relate.

:grouphug

[Roses]

I just wanted to pop in and say hello to everyone. :) My dd is now 5 1/2 and was dx'ed with SID at 2. She currently gets private OT 1x a week (I have to drive 50 miles, if it were closer, she would go more frequently) Is participating in listeing therapy, and we have a sensory diet in place......brushing/joint compressions, weighted blankets, oral (if needed), we also do activities with therapy balls, lots and LOTS of swinging, trampoline, yoga (really!), rice box, fidgets, puzzles, Sit O' Disc, etc. -the list goes on. :)

My dd is also diagnosed with ADD (recently) and is also has celiac disease (gluten intolerant). In sept. she had a boarderline functional vision exam, and will be getting another on the 15th (from a different dr.)

My dd is in public kindergarden, and although she is not doing well academically, she is blossming socially, and she is now able to participate during class. (she was extremely anti-social at one time). The school nurse brushes my dd two times a day.

My dd also has anxiety issues, and sometimes has extreme separation anxiety issues. There are concerns that a learning disability may develop.

I can't tell you all how much a sensory diet can improve life for both you and your dc's. :)

[lauren]

Roses can you say how you integrate all that great stuff into 'real life' with the school schedule and everything. Since our OT stopped because of insurance, we have had a hard time figuring out how to blend in the activities. Our ds is almost 9 and also SID/ADD/strong willed(!). Do you just let your dd use them on her own, or do you do a daily program?

[Roses]

Sure Lauren! Most days, it is really easy. Somedays are really hard, but here is a typical day........

Morning...1st thing, big tight hug, one from me, one from dh. Get dressed, we usually have difficulties with getting dressed- anything can start to bother her- but usually, she wears a dress and tights. The tights are great for deep pressure on her legs. And, well, dresses are pretty, and that works for her. For your ds, maybe a tightish t-shirt under the shirt he will be wearing that day (if he likes it) would give some deep pressure input. Some times my dd wants to layer, and I just let her, as long as it's not too off the wall. Then she eats. Getting her to eat in the am is difficult, but we try. She is on a gluten free diet, which is still rather new to us. We brush her hair, and she will brush her teeth. I bought a kids' spin tooth brush, so that's great oral input there. Then we do brushing with joint compressions. Usually, instead of the full joint compressions, she will do 10 wall push-ups and jump 10 times. I clip a chewy tube to her dress if she has been having the need for more oral input. (She puts objects in her mouth. in the fall she swallowed dd1's diary key) Also, if she has been having a rought time, I will put a weighted blanket in her backpack for input. I pack her lunch in the AM, too. She has unusual tastes, and I pack according to what she wants, not what is the norm.

At school, she is brushed and gets joint compressions two times a day from the school nurse. All I had to provide was info and a signed letter from her OT (and I trained the nurse, and two subsitutes on how to do it). She goes to the nurses' office while transisting to and from other activities, the other children don't even know that she is gone. (That's important to us, we don't want anyone thinking that she is different). Of course, she gets lots of swinging at recess. We also provided a list of sensory activites that my dd could be participating in, and the teacher does cooperate, like letting her wash the black board. She also has a sit o' disk at school, but I don't think the teacher uses it with her.

Coming home from school is usually her worst time of the day. When we buy our own headphones, (we are borrowing from the Listing therapy OT) She will wear the headphones and listen to calming music on the bus ride home. At $140 a pair, she is not breaking someone elses'. She gets brushed then, and has a snack. She then puts on the headphones and we play a card game (she has a favorite we play almost everyday) SHe sits under a weighted blanket, too. If the weather is okay, she goes outside. I encourage her to do lots of activities then-swinging is the best, jumping on the trampoline (we have an indoor one I bought at Dick's for $30., riding on a scooter board that was about $12 from the Abilitations catalog, riding the 'flying turtle' that was about $75, and I got it at a toy store here. Anything I can think of to try to improve body strength, we will try)

After dinner, I try to get her to do more activities, go for a walk, play outside. (we do games out side, like catching bubbles) If the weather is bad, we do indoor things, like doing the yoga tape, doing ball exercises, putting puzzles together while laying in a prone position, pulling beads out of theraputty while watching TV (one of her favorites!). I have a TV tray that I put on her lap if she is watching TV, and she is always working on something a puzzle, pop beads, writing. She uses a weighted blanket for calming when needed.

Then it's bath time. Make pictures with shaving cream on the tub walls, pouring, what have you in the tub. Put on the listing therapy and brushing/joint compressions, or maybe a massage after the bath if she is not too tired, into bed-with it's 576 pillows, stuffed animals, and blankets.

If there is home work sent home, we work on it after she has an after school snack. I hate even the idea of home work, but it has to be done (she only in kindergarden, so it's usually fun things to do).

So, that's pretty much it, I guess. If there is anything I can think of, hear of, I try to work in it. I want to sew a huge beach towel to her fitted sheet on her bed for more input while she is sleeping. We are also working on getting hanging chairs, and indoor swings. Our house is 150 years old, and has beam issues that need to be addressed first. I have a lot of handwriting 'tools'. She has difficulty with handwriting, (has improved greatly over the last two months!) So we work on that. ADD has stolen her ability to remember things well, so, we work on memory type games and use flash cards. A lot of the time, I just let her 'play' with flashcards herself. She has an autisic feature of lining things up, so she will arrange things herself, and I believe she learns through play.

Sorry to ramble on a bit, there. But that is a basic school day. We have good days and bad. We don't always fit everything in. (usually the listing therapy is forgotten, or there isn't enough time to get it in, there has to be 3 hours between listening sessions).

[lauren]

Wow, thank you for taking the time to write all that. It is inspiring how you have found a way to integrate these activities into the daily routine. I am still working so hard on that.

I made a weighted shawl on my sewing machine, which I filled with dry rice, chamomile, lavendar and other herbs. I put that on ds when he is strung out. We can even put it in the microwave to warm it up. A weighted blanket is like the same thing, but bigger, right?

I agree it is useless to try homework before a good snack. My ds comes home depleted and needs to be "filled up" before tackling any new challenges.

I think I'll print out your suggestions and try to work on our routine!

[Roses]

I made dd's weighted blanket. :D I make them for the Development Center where dd gets her OT, too.

I use flannel sewn in 'pockets' filled with PVC pellets and trim it with binding. Washability was a big factor in making ours, but the scents sound wonderful!!

[LaLa]

bean sleeps with a teddy bear that is really nice and heavy and we play with him (give hugs etc)...he is stuffed with lavender, roses, buck wheat and other similar items. He can even be heated for winter and stays warm for 2 hours!

I love it
:love
she is sleeping with it right now and before bed we do some play/joint movement and integrate the bear into the routine :)

[lauren]

Pulling this thread up for a new OP to look at...

[intensity_too]

This has been helpful. I believe my 2.5 y/o has SID. He has an evaluation next week. I'd say more but I have a squirmy 5 1.2 month old on my lap. :)

Jaime

[Lucysmama]

I am so thankful to see this thread. I believe my dd has SID but we have yet to get a formal diagnosis. We're between pediatricians. ;)

A lot of my family doesn't believe she has anything "wrong" with her, which is frustrating. Even my dh is very hesitant to look into this.

I'm seeing her become more and more paralyzed by her "issues". She'll barely even go outside anymore to play. She's terrified of bugs, heat, train noises, sweating, the list goes on. The tantrums average maybe 10/day. She won't wear many shoes and clothes "bother her", especially seams. We have to cut the tags off of everything. Synthetics are out entirely. Toys have to be lined up in a certain way, in a certain order. Recently, I had my phone set to vibrate and it went off, in the living room. She refused to come into the living room the rest of the day. She's upset by irrational things like DVD menus...if one comes on, she screams like something is hurting her. If she doesn't turn a movie off before the credits start, she has a total meltdown.

She is VERY bright, very interested in learning, very mentally ahead for her age.

Does this sound like SID, OCD, like something else, or just like normal 3 year old behavior???

[lauren]

Does she relate well to you and to others? As in, does she reciprocate communication, share meaning with you in pretend play and follow conversation without getting sidetracked on an obsessive thought? Lots of kids with sensory issues can also have relational difficulty, which is sometimes connected with issues on the autism spectrum.

[Lucysmama]

She relates just fine IMO. Total chatterbox, huge vocab. Her social skills seem on par for her age...40 mos, BTW. She does follow and participate in conversation without being sidetracked w/ obsession, but will dissolve into tantrums during conversation if it presses one of her "hot issues".

Like, if we are talking about what to do that day, and playing outside is mentioned, she may just scream and dissolve into tears at the thought. Is that what you mean???