DS6 just diagnosed with Sensory Integration Disorder

[goofy's friends]

What can you tell me? His OT at school diagnosed it, but pediatrician never heard of it. According ot the books (Out of Sync child and Everything about...), he is "sensory seeking" and has issues with all senses except maybe smell and taste aren't affected too much.

I posted on the Community board, but was told there was much more knowledge here!:thumbsup2

[BethanyF]

I just replied to your thread on the CB and wanted to reply here too.
I wont repeat everything I said there, but did want to comment on your ped's unfamiliarity with SID.
From what I understand, SID is more of an occupational therapy / physical therapy thing than a medical condition. Its still disappointing that a pediatrician has never heard of it. On the bright side...you may have taught him (?) something that may help another patient down the road.
Another thing I have learned is that not all school districts offer services for SID alone :( My son gets services for his SID because he also has Asperger's. Without the Asperger's dx he wouldnt be eligible for school provided OT.

[MummyAW100]

Have you considered seeking a thorough neuropsychological workup? I ask this because SID often travels with other issues. (Aspergers is just one, so I'm not implying that this is the case. My son has something called Non-verbal Learning Disorder that also travels with SID. CAPD does as well as do a host of other issues. It might be worth considering just to get a handle on what SID means. Our neuropsych really helped us understand the SID issues our son was facing and helped us get on track with treatment issues.)

That said, kids with SID issues are often very bright, thoroughly intelligent youngsters. My son makes great grades in a regular and challenging middle school curriculum, but he requires some accommodations that help him get through the maze. He walks with a slightly different gait, and he squirms a lot. (Neuropsych explained this by saying that he -- our son -- never really feels "comfortable" with where his body is in space.) When he was younger, he was afraid of new places because he thought he would get lost. Now we really acquaint him with new places when we get to them, and he's an excellent navigator. His handwriting will NEVER be good, but he's gotten really good at typing. (Two different sets of muscles and nerves) Don't even ask me about our year in t-ball. But he LOVEs watching football and can tell anyone who will listen everything about the past five seasons of our local university's football exploits. He finally learned -- last week -- to tie his shoes. We had a family celebration and went out to dinner. But we still get shoes that have velcro or slide on because I really don't want to add extra stress to his life at school.

Convincing teachers that SID exists and has a very real impact on life in the classroom is sometimes difficult, but I persist. I'm a teacher, too, so I know it's possible to make life easy and enjoyable for a child with SID in school. I'm not going to take any excuses.

My child is also a sensory seeker. That is fun because we get to go on all kinds of wild rides. He loves roller coasters -- the higher and faster the better. He's been this way since he was 4. He's 11 now, and last summer he dragged us to Cedar Point, Ohio, so we could ride some monstrosity that was higher and faster than any roller coaster has the right to be. Life with a seeker is full of interesting experiences, indeed.

Hope I've answered a few questions or at least made your search a little easier. Feel free to write back or pm me if you have questions.

JulieWent
(I've just noticed I'm on my son's login!)

[WildGrits]

I never found our ped to be of any help. Our school was right on top of things though.

Congrats to your school for catching it.:thumbsup2 Get in touch with your schools OT about what you can do to assist in his Sensory Diet.

[brettgirl]

My DS6 was diagnosed first with being developmentally delayed then we moved onto SID (2yrs) with it. He had physical and occupational therapy for three years. He now has grown to learn to live with his sensory disorders (we can wash his hair now, he will play with sand now, he will get dirty but will clean up immediately, holds my hand and kisses/hugs, etc.). We have worked very hard with him/school/therapists to get him to where he is.

At a little over two he was diagnosed with PDD-NOS (now he is Autistic Disorder, mild), anxiety state and low tone.

My suggestion to you is get a neuro exam from a pediatric neurodevelopmental doctor. The best thing for me is that when my son had a diagnosis, I could get so much free help from my state. My son has successfully completed kindergarten (regular with a TSS helper all day), joined t-ball, has a rote memory that could kill and is taking up learning the electric guitar. Not to mention he is a really good kid, he is kind of the mascot for his primary school.

Read, read, read, everything you can get your hands on......computer is great too. I know your child does not have autism, but on those boards parents talk a lot about sensory issues.

Any questions, concerns, PM me.

[Ms_Butterfly]

I wasn't diagnosed with Sensory Processing Disorder (the current name for the disorder - SID is one of the old names, though you can still find it in use) until I was an adult, but I definitely have it and it affects all seven of my senses. My favorite page on it, even though about kids (most stuff is), is: http://www.thegraycenter.org/sensoryinfo.cfm

I just posted a bit about the eating problems SPD can cause in another thread, so you can read that, too, if you'd like.

[Ms_Butterfly]

From what I understand, SID is more of an occupational therapy / physical therapy thing than a medical condition.

SPD - Sensory Processing Disorder (formerly known as Sensory Integration Disorder or Dysfunction) - is a neurological disorder, meaning it is a physical disorder. It is a medical condition.

[wvdislover]

Ms Butterfly, thanks for the interesting link about SPD. It will be really helpful to print out and give to DD10's teacher this fall. A lot of it explains some of my DD's behaviors really well. Where did you write about eating issues? I tried to find it, but couldn't. It's interesting that my DD gets "hooked" on different foods. The present food of choice right now is PB&J, something that she wouldn't have touched less than a year ago :confused3 . She also usually has the same thing for b'fast for weeks or months at a time. Was Poptarts (with trivia questions on them--I wasn't real sure about the food dye on them, but when she wants something to eat, she usually won't accept anything else, esp. at b'fast), now it's toast with butter on it (something else she's never really liked--go figure!).

[buffalogirl]

I wasn't diagnosed with Sensory Processing Disorder (the current name for the disorder - SID is one of the old names, though you can still find it in use) until I was an adult, but I definitely have it and it affects all seven of my senses. My favorite page on it, even though about kids (most stuff is), is: http://www.thegraycenter.org/sensoryinfo.cfm

I just posted a bit about the eating problems SPD can cause in another thread, so you can read that, too, if you'd like.

Ms Butterfly- Thanks for posting this article! Many of these things apply to my DD8.
I'm curious, does SPD continue to affect your eating habits as an adult?

[Ms_Butterfly]

Ms Butterfly, thanks for the interesting link about SPD. It will be really helpful to print out and give to DD10's teacher this fall. A lot of it explains some of my DD's behaviors really well. Where did you write about eating issues? I tried to find it, but couldn't. It's interesting that my DD gets "hooked" on different foods. The present food of choice right now is PB&J, something that she wouldn't have touched less than a year ago :confused3 . She also usually has the same thing for b'fast for weeks or months at a time. Was Poptarts (with trivia questions on them--I wasn't real sure about the food dye on them, but when she wants something to eat, she usually won't accept anything else, esp. at b'fast), now it's toast with butter on it (something else she's never really liked--go figure!).

So sorry for not getting back to the board before now!

Here's the food thread: http://www.disboards.com/showthread.php?t=1514909

I don't get hooked on foods like your daughter does, but have heard of others being that way, so it is completely normal (for someone with SPD, of course).

[Ms_Butterfly]

Ms Butterfly- Thanks for posting this article! Many of these things apply to my DD8.
I'm curious, does SPD continue to affect your eating habits as an adult?

Yes, everything about SPD continues to affect me, including eating. It is a lifelong neurological disorder.

I am hypersensitive as far as eating goes. I can only eat very few things. Textures, tastes, and smells of many foods cause me to gag or almost throw up. I can't eat meat, fish, most fruits and vegetables, salad, and more. My main course dishes I can eat are pasta (w/butter or w/some meatless red sauces [occassionally] or w/Alfredo sauce [a new addition within the past 3 or so years]), pizza (cheese only), and grilled cheese (nothing but bread and cheese and I can't eat crusts). There are some snacks, appetizers, and desserts that I eat, but those are also very limited compared with the normal person.

[buffalogirl]

Ms Butterfly- You're the grown up version of my DD! She's the queen of plain pasta.;) Thank you so much for sharing your experience. I guess I now have more realistic expectations for her eating habits. I've never believed in force feeding or "clean your plate", but occasionally convince her to try one bite of a new food. It's rare that we find a "new" food she likes.

[Ms_Butterfly]

Glad I could help! :)

[MomOf2DisneyKids]

http://www.thegraycenter.org/sensoryinfo.cfm


this is a little OT, but...
that's a great website..and if you need any info on social stories, etc, that's the place to go! I heard Carol Gray speak at a conference almost 2 years ago...she was great!

[petlvr1064]

Yes, everything about SPD continues to affect me, including eating. It is a lifelong neurological disorder.

I am hypersensitive as far as eating goes. I can only eat very few things. Textures, tastes, and smells of many foods cause me to gag or almost throw up. I can't eat meat, fish, most fruits and vegetables, salad, and more. My main course dishes I can eat are pasta (w/butter or w/some meatless red sauces [occassionally] or w/Alfredo sauce [a new addition within the past 3 or so years]), pizza (cheese only), and grilled cheese (nothing but bread and cheese and I can't eat crusts). There are some snacks, appetizers, and desserts that I eat, but those are also very limited compared with the normal person.

You sound like me as far as spd. I have Auspergers and spd as a part of it. I can and will eat more then you but there are certin things I can not eat. I can not set foot in red lobster or i will litterly gag so much i will almost throw up also food courts at the mall or fairs and amusent parks make me do the same thing i think it is the smell of fried food. Also i can not stand loud noinses like thunder storms they scare me to death.

[solferino]

Too Loud Too Tight Too Fast Too Bright by Sharon Heller (http://www.amazon.com/Loud-Bright-Fast-Tight-Overstimulating/dp/0060932929/ref=pd_bbs_sr_1/002-0573111-8029656?ie=UTF8&s=books&qid=1186338711&sr=8-1) is excellent. I started reading it last week and it's blowing my mind. I never realised that I was sensory defensive- will only wear certain clothes (knit tops ONLY, clogs or non-tying, non-tight shoes on my feet) , eat certain foods and some sights/sounds all at once overwhelm me. It's been eye opening to say the least.

It said that the DSM-IV does not recognise it as a disorder, which goes to show why so many dr's don't "know" about it. There are occupational therapists trained to work with SD people. Hopefully some day it will be better understood. I wonder if many of the kids with ADD and other learning disabilities are actually ones with sensory issues.

I highly recommend this book. It's been really helpful.

[Ms_Butterfly]

You sound like me as far as spd. I have Auspergers and spd as a part of it. I can and will eat more then you but there are certin things I can not eat. I can not set foot in red lobster or i will litterly gag so much i will almost throw up also food courts at the mall or fairs and amusent parks make me do the same thing i think it is the smell of fried food. Also i can not stand loud noinses like thunder storms they scare me to death.

Yeah, the sensory symptoms (which, like other symptoms, some may or may not have) to Autism are just like SPD. Some think SPD is on the Autism Spectrum while others do not.

Yup, smells can definitely cause you to gag and/or throw up. So can sights and prob'ly even sounds, though that's prob'ly pretty rare 'cause I don't think I've heard of it before. And, of course, taste and texture (feel) cause it.

I don't mind the smell of fried food too much - and I can eat French fries and fried dough and mozzarella sticks (I think those are fried, at least some of the time, since I've heard them be called "fried mozzarella"). But the smell can get overwhelming and disgusting, especially at a county fair type setting where there's a booth of way-too-fatty/way-too-caloric food every three steps (LOL).

I don't mind thunderstorms, but I'm currently at a hotel and yesterday they were testing the smoke detectors - VERY high-pitched alarms that hurt a lot!! :scared1:

[Ms_Butterfly]

Too Loud Too Tight Too Fast Too Bright by Sharon Heller (http://www.amazon.com/Loud-Bright-Fast-Tight-Overstimulating/dp/0060932929/ref=pd_bbs_sr_1/002-0573111-8029656?ie=UTF8&s=books&qid=1186338711&sr=8-1) is excellent. I started reading it last week and it's blowing my mind. I never realised that I was sensory defensive- will only wear certain clothes (knit tops ONLY, clogs or non-tying, non-tight shoes on my feet) , eat certain foods and some sights/sounds all at once overwhelm me. It's been eye opening to say the least.

I haven't read that yet, but have heard it is good. Yeah, I can't wear socks and don't like closed-in shoes (in other words, I go barefoot any time I can and if I have to wear shoes, I wear strappy sandals [unless I'm somewhere where it is so cold I have no choice but to wear roomy boots, since I think frostbite would feel even worse ;) ]).

It said that the DSM-IV does not recognise it as a disorder, which goes to show why so many dr's don't "know" about it. There are occupational therapists trained to work with SD people. Hopefully some day it will be better understood. I wonder if many of the kids with ADD and other learning disabilities are actually ones with sensory issues.

There is an organization that is trying to get SPD into the next version of the DSM. I think it is called SPD Foundation now, but it was formerly known as the KID Foundation. If you Google them, you can find a petition you can sign to help get SPD into the DSM.

[solferino]

I haven't read that yet, but have heard it is good. Yeah, I can't wear socks and don't like closed-in shoes (in other words, I go barefoot any time I can and if I have to wear shoes, I wear strappy sandals [unless I'm somewhere where it is so cold I have no choice but to wear roomy boots, since I think frostbite would feel even worse ;) ]).



There is an organization that is trying to get SPD into the next version of the DSM. I think it is called SPD Foundation now, but it was formerly known as the KID Foundation. If you Google them, you can find a petition you can sign to help get SPD into the DSM.


I totally hear you on the boots thing. I got a pair of sheepskin boots a couple of years ago (not Uggs, but on that idea- Old Friend brand- better made!) that I can wear without socks. I loathe wearing socks but at some point I do have to start wearing them.

Thanks for the heads up on the petition for adding it to the DSM. What is so interesting is I started reading the book to better help me with ideas for helping a student where I work that has severe sensory issues. I never realised when I got the book that I'd be helping myself too. I guess after living with these quirks for so long that they just seemed normal.

[Ms_Butterfly]

Yeah, it is funny how we don't realize things we experience aren't what others experience 'til we're told that! When I was first diagnosed with SPD, I'd never heard of it before and that's not at all why I was at the doctor's, so I just brushed it off - 'til I looked it up online and found sites describing the symptoms (such as the one I've given the link to on here) and having checklists of symptoms. Then it was a series of, "So that's what that's from?"/"So that's why I'm like that?" and, "Other ppl aren't like that?" (i.e. "Other ppl don't hear like that?") as I read through the symptoms. :idea: It definitely changed my world - and for the better. :)

[Hasil72]

Its still disappointing that a pediatrician has never heard of it. On the bright side...you may have taught him (?) something that may help another patient down the road.
Another thing I have learned is that not all school districts offer services for SID alone :( My son gets services for his SID because he also has Asperger's. Without the Asperger's dx he wouldnt be eligible for school provided OT.

We didn't learn that DS8 had SID until he was already 4 because our pediatrician didn't recognize it as a diagnosis. They kept telling me he was just being a boy, immature, out of shape, blah, blah, blah. So we called our local school child study team. Before they were even through the phone interview, they had a pretty good idea that it was SID. Strangely, he experiences both seeking and avoiding in most categories. He was later diagnosed w/ADHD, low tone from the developmental delays (another one the pediatrician missed), on the autism spectrum somewhere between Asperger's and PDD-NOS, and generalized anxiety disorder.

You may have to really push for a diagnosis. I know that each state has different regulations for determining if your son is eligible for services but before they made a laundry list of DS's "issues", we were able to classify him as OHI-Other health impaired because he had allergies in addition to the SID. Try any loophole you can find. DS has made such progress with OT. He can actually sleep through the night, think before he raises someting to his mouth, and wait until after school to take off his shoes and socks! Seems crazy, I know, but just wait and see.

Also, be prepared for a lot of explaining. We found that we have been in a constant defensive mode with people who haven't heard of, let alone understand SID. They think that in order to have a disability, you need to "look the part". We have so many people who have told us "he looks normal enough to me, you just need to be more strict" or do this or that and he'll be fine. To the point where my grandmother, who used to teach kindergarten, accused me of "abusing" my child when (after 3 years) we finally tried medication for the escalating ADHD/anxiety. I agree with the other posters to read any information you can get your hands on and don't be affraid to speak up and voice what you think is in your child's best interest.

Good luck! :goodvibes

[wvdislover]

We didn't learn that DS8 had SID until he was already 4 because our pediatrician didn't recognize it as a diagnosis. They kept telling me he was just being a boy, immature, out of shape, blah, blah, blah. So we called our local school child study team. Before they were even through the phone interview, they had a pretty good idea that it was SID. Strangely, he experiences both seeking and avoiding in most categories. He was later diagnosed w/ADHD, low tone from the developmental delays (another one the pediatrician missed), on the autism spectrum somewhere between Asperger's and PDD-NOS, and generalized anxiety disorder.

You may have to really push for a diagnosis. I know that each state has different regulations for determining if your son is eligible for services but before they made a laundry list of DS's "issues", we were able to classify him as OHI-Other health impaired because he had allergies in addition to the SID. Try any loophole you can find. DS has made such progress with OT. He can actually sleep through the night, think before he raises someting to his mouth, and wait until after school to take off his shoes and socks! Seems crazy, I know, but just wait and see.

Also, be prepared for a lot of explaining. We found that we have been in a constant defensive mode with people who haven't heard of, let alone understand SID. They think that in order to have a disability, you need to "look the part". We have so many people who have told us "he looks normal enough to me, you just need to be more strict" or do this or that and he'll be fine. To the point where my grandmother, who used to teach kindergarten, accused me of "abusing" my child when (after 3 years) we finally tried medication for the escalating ADHD/anxiety. I agree with the other posters to read any information you can get your hands on and don't be affraid to speak up and voice what you think is in your child's best interest.

Good luck! :goodvibes

Your DS sounds just like my DD10. She has been able to get OT services through school b/c of her issues. We were able to add some special ed. services (which she really needed to help her academically) through the "other health impaired." Technically, she is supposed to be getting organizational help b/c of her ADHD. She didn't qualify otherwise, b/c her test scores were just a few points over the "line" they've drawn to diagnose LD; however, she was struggling enough in school that she NEEDS the special ed. help. So, the special ed teacher (who was already helping my DD in the classroom when she was also helping another student) and DD's OT really pushed and were able to get DD special ed help in organizational skills in math and reading. Not really what I was hoping for, but it has worked pretty well--we have our foot in the door now (and it only took from the first day of school until halfway through 4th nine weeks of school to make that happen :mad: ). Now, we just need to see how her standardized test scores come out to see if they'll be able to help her more.
Bethany, keep trying and good luck! Check out the link that Ms Butterfly has in an earlier post--it has some great insight into SID.