Gifted Issues Discussion homepage Forums Twice Exceptional Sensory Integration Disorder

Does anyone have any experience with SID or SPD? I'm having some issues with my Kindergartner who is probably also moderately gifted. He is struggling with school right now and when I read about SID, I felt like I was reading about my son.

Here is an article with one mother's perspective...

http://www.fivehens.com/adhd-maybe-not-spd/

It was a family friend/elementary teacher who mentioned this disorder when we described my son's behavior and the more I read online, the more I want to find out more. There are a lot of books on the topic too - does anyone recommend a specific one? I think if he has this, it is mild however it is interfering with his success at school.

My son was 'diagnosed' with Sensory Integration difficulties in 2nd grade, and got 6 months of private Occupational Therapy (paid for by insurance mostly)once a week and 2 times a week in a small group in school. It seems like it helped tremendously, and it certianly got him out of the classroom, which was very important at the time.

Some gifted kids have trouble due to their 'OverExcitabilities' http://www.hoagiesgifted.org/dabrowski.htm
sometimes it's hard to know if it's one or the other.

My thought is that if it is interfering with one's life, and you can afford the OT, give it a try! It seems like the younger the child is, the better the whole thing works. I wouldn't try to 'do it myself' from books if I had a choice about it, if it does seem to be a struggle for him.

Best Wishes,
Grinity

LOL - I commented on the article. That kid is gifted, and even if the OT work helps him stop acting out, it doesn't negate that he deserves to be taught at this readiness level. Thanks for the link!
G

We did therapy as well. It doesn't seem to go away, but there was noticeable improvements. Our insurance paid, but because it was causing motor delays and proprioperception problems. It has been our experience that sensory issues are worse when there are excitabilities present at the same time.

Who did the actual diagnosis?

His teacher called me today because she is concerned about him and she suggested I meet with her, the counselor, the gifted coordinator and the AEA person. I guess I'm just trying to educate myself first so I can advocate for my son and talk intelligently about the issues we are having. The teacher had never heard of SID.

We to struggle with this. We have the diagnosis through an occupational therapist. We were given a home program, exercises to work on at home since DS7 is homeschooled. I recommend the book "The Out of Sync Child" by Carol Kranowitz for starters. It helps to become aware of your child's behaviors/reactions to his environment. I agree with Grinity that you should have an evaluation if you suspect it and follow the plan they set up for you not a step-by-step in a book.

My son has the flight response as his primary coping strategy. When he cannot flee, he melts down. He is very intuned to when he needs to get away from stimuli. He is especially sensitive to loud noises, crowded places, encloses space. Funny story: We took him to an optometrist appointment. Enter small enclosed room, dark lighting, and a man putting a big round heavy object directly onto his face. He was squirming up a storm. After the exam the OD asked me point blank if we had ever had him evaluated for SID. When I told him we had the dx, he said his daughter (now a teenager) had gone thru occupational therapy. He said now he recognizes it in kids right away. Amazingly once the machine was gone and the lights turned on and the door open, DS7 calmed down and sat perfectly still. We have worked on coping strategies and while the behavior still rears its head, DS7 is learning to cope. He still wants to flee but his tolerance is going up. He never would have stayed in that room 8 months ago before therapy.

We do tons, tons, tons of hands-on tactile stuff: play do, clay, shaving cream, whipping cream, mud in summer, goo, slime, oil, etc. We do the bouncy ball, trampoline, hoola hoop (his latest), bike riding, and walks EVERY day. There is no quick fix. It is learning to understand your body's responses and a lot of stimuli avoidance, for us museums have to be 1-2 hours max, no movie theaters, understanding that certain stimuli require absolute alone time/quiet/down time afterwards.

DS7 lost a tooth last week. For 2 weeks prior he easily could have been diagnosed with ADHHHHHD. Yes tons of emphasis on the hyper part. Once the tooth came out-instant calm. We caught up on school work after that.

HTH.

Here is a better link but if you have experience with this you are probably already aware of this site...

http://www.spdfoundation.net/index.html

There is some great basic info in the About SPD link.

Hi,

Thanks so much for linking to our guest post about SPD. Our friend Cat was so kind to share her personal account with us and our readers and we're glad it's reaching a wider audience and bringing attention to SPD/SID.

Thanks again,

The Five Hens

My 11 year old son has it. He was very fidgety at age 5. He jumped up and down and did this thing with his hands that looked like he was trying to shake water off of them whenever he was really excited about something, which was often. He thought the world was an exciting place and he seemed to be interested in everything and he loved to talk about those things. He just loved to talk. He talked fast and used his hands a lot when he talked, but he also liked to use a lot of big words that the other kids didn't understand. He didn't go to preschool so most of his life he had been around adults who understood these words so having to dumb down his speech was an adjustment that he had difficulty making. He preferred being with kids who were three and four years older and his good friends were all older gifted kids.

My son loved to talk about interesting things he had heard and read that other kids were not interested in so he often talked to the teachers on the playground instead of playing. He felt safer there anyway. Since academic redshirting is very common here, all of the other boys in his class were older and bigger. Some of them liked to bully kids who were different in any way and because my son was smart, had sensory issues, and couldn't keep up with other kids physically, he was bullied.

But most of the other kids seemed to like him. Some of them would ask him to read things for them because they couldn't read yet. He felt good about that. He also liked to make other kids laugh. Because he enjoyed the social part of school, except for the bullies, I wanted school to work, but we were told by the principal and a teacher to homeschool because our small town school could not provide an appropriate education for a twice exceptional child. When the kindergarten teacher suggested that we hold him back in a transitional first grade the next year because he couldn't color in the lines even though his reading, comprehension, and math were above grade level I knew I really had no choice. We had tried to explain the hypotonia and the fine motor delays but it made no difference. This teacher really believed holding him back and making him practice coloring without OT of any kind would "fix" his problems. She didn't think he needed to learn anything the next year because his reading and math were advanced. My son wanted to learn so I had to homeschool.

My son liked kindergarten except for having to color in the lines which he found boring and difficult because his hands tired easily since he had hypotonia and I didn't know it at that time, but also motor dyspraxia. He wasn't eligible for OT because at 5 he was already reading at a 5th grade level and doing some multiplication. In our state you have to be failing in order to get OT and he was only failing to color in the lines.

My son's favorite thing to do in kindergarten was the puppet theater where he could make up his own show and do voices and make the other kids laugh. He could channel his energy into something creative that didn't involve fine motor skills. His kindergarten was only half-day and because of his sensory issues I think a full day would have been too much for him. He needed to take breaks to move around and when I homeschooled him the next year I let him move around while I read to him and let him practice spelling and math facts orally while jumping on a trampoline.

Yeah, there's a good idea. He already knows everything, so it won't hurt him to stay back and spend a year learning how to color. Good lord.

I'm pretty sure our DS7 has some of this SID thing, but I don't know anything specific and haven't really studied it. When he was very small, he would freak out if he got even a drop of water on his clothes, and would have to take them all off. Just about a year ago, he started getting upset with the tags in his shirts--but they hadn't bothered him before.

And of course, it really bothers me to be splashed, so much that kids' bathtime is the worst time of my day, so the apple didn't fall too far from the tree.

When my son was younger he hated having water splashed in his face but loved warm baths where he could control the temperature. He liked to be clean and smell good, yet he would often have a messy face whenever he ate. He seemed to be up moving all the time, yet with all that exercise he still seemed to have weaker than average muscle strength. He loved being with other kids but preferred watching them in sports activities because he couldn't keep up with them physically. He was always too hot or too cold. He seemed more sensitive than other kids in so many ways yet he didn't have meltdowns except occasionally at home, but I was always worried that if he didn't have a safe place to unwind after something like a scout event where he had to deal with the heat or cold, dirt, bugs, pain from walking or headaches that he might have a meltdown and he would be terribly embarrassed. He was very sensitive about what other people thought about him, yet he would clown around using self deprecating humor and he could be very funny.

He is better able to deal with some sensitivities now that he is 11. For example, we recently took his big seven-month-old labrador puppy to get spayed and he had to take care of her in the back seat of the car for the 30 minute drive home. I had towels all over the back seat--everywhere except where he was sitting. Fifteen minutes into our drive home, the puppy had to throw up and she threw up all over my son. He kept yelling at me to do something and I told him he would have to deal with it until I could pull over. My son who is sensitive to smells and everything else had to sit with dog vomit on his clothing for fifteen minutes but still had the presence of mind to get his iPhone and check to make sure his dog was okay and that the yellow color of the vomit was not a symptom of something serious that might require taking her back to the vet.

I just started reading The Out of Sync Child and I read Bear on almost every page. I knew he had some sensory issues, but the book describes him to a T in several areas. I'm planning on taking the information to his pediatrician, but we only have catastrophic insurance coverage so OT would be out of pocket and I doubt we can afford it. I'm not sure what to do...?

Wyldkat-I just sent you a PM.

I talked to a local agency that gives free screenings for SPD. She gave me a tip - she said to not mention the word sensory to our insurance company. Apparently that is a red flag and then they won't pay for anything if we need therapy.

Hmmm I knew DS had some sensory issues but after reading more he fits SID/SPD rather well. I wonder if that's a lot of his issues in school? He has 'breakdowns' when things don't go as planned. Mostly if he doesn't finish something before they need to move on.

Today was apparently a bad day for him and I think it all stemmed from getting 'hurt' on the way to school by a friend. She accidentally hit him with the zipper pull on her jacket. I'm pretty sure it barely hurt but it set the mood for the morning apparently.

Where/how did you find this agency?

That's possibly the case. I know for our insurance to cover therapy the child had to have motor delays, proprioperception, balance, and/ or eating issues, that were below a certain percentile for their age. Fortunately, the therapy for these issues are helpful for SPD.

Just thought I'd let people know if they don't, because I didn't until last week when I asked our neuropsych, that the whole diagnosis of sensory integration isn't supported by research. It isn't clear whether kids get better from the OT because their senses are being integrated or because the OT is fun and they're spending quality one-on-one time with an adult. Good to know, I thought. Had no idea, as many kids I know have been diagnosed and treated for it and I talked to a psychologist who claimed it was the single most effective intervention we could do . . .

I think you will find there is disagreement and agreement among neuropsychs. We used a neuropsychologist, not an M.D. neuropsychiatrist, and he told us what he suspected based on observations. We then took our child to the pediatrician to get a referral for an OT evaluation.

Our child had motor delays, but our child was more an avoider than a sensory seeker. I think if a child avoids certain activities maybe they are more likely to have a motor delay to begin with, or perhaps more likely to acquire one.

Since there is disagreement to as to whether it exists or not insurance requires other evidence like I mentioned in my previous post. The physical issues improved, not necessarily avoidance of noise or smells etcetera.

Something occurs in some children that can be documented as a physical motor delay co-occuring with sensitivities whether or not "experts" want to call it SPD or SID or nothing at all.

Hello all,
It's been a long time since I've cruised the boards but, as an SI trained OT you know I look for these types of posts!

Just wanted to share with everyone here that the SPD Foundation (www.spdfoundation.net) is working very hard to have SPD placed in the DSM-V. All the data and information regarding SPD has been submitted to the review board. Now they are just waiting to find out if it will indeed be entered as a unique diagnosis in the next version, due out in 2012. Contrary to what many are saying, there IS research that supports the presence of SPD as a unique diagnosis. What is needed now is to have a presence in the DSM-V as this will allow foundations such as Dr. Miller's to access more funding for further research into the diagnosis and effective treatments. Insurance companies won't pay for it or treatment to address it because it doesn't exist as a diagnosis in the official manual! So, when I see a child with SPD I have to identify other diagnoses in order to get reimbursed, like hypotonia, dyspraxia, etc. Getting SPD in the DSM-V will also force insurance companies to recognize it and pay for the services.

I think I did a search on sensory and our town (Des Moines)...

http://www.childserve.org/index.php/component/registrationpro/?func=details&did=8

I'm not sure if most cities have this type of non-profit or not. Childserve has a good reputation here but I always thought of them as serving kids with more severe disabilities so it was just luck that I found this.

Thanks! I'll check that out.

I found out that there is a federal program managed by the states (or something like that) that will test and provide support to kids under the age of 3 if their issues will effect schooling. After 3 it is taken over by the school system. Both are supposed to be free. Our pediatrician just wrote a referral to the CA version for Bear about the sensory issues when I told her what I had found in the tantrum diary I've been keeping. YAY!

my 3 1/2 year old who taught himself to read, has sensory integration disorder. he toe walks, so he falls all the time, he does not like loud noises so he tends to hide and cover his ears or lay on the floor and make carpet angels (like snow angels) if things are too loud. he tantrums to no end when he gets overwhelmed(again, usually by noise). he doesn't like the way his clothes feel, he scratches up his skin when he is overwhelmed, sometimes drawing blood. he doesn't like change. i worried about him, and had him evaluated for free by the state early childhood intervention program when he was 2. he was not delayed enough in enough categories to receive services. i waited until he was 3, and contacted the district office and our local school screened him for services by the school. they said his problems would likely not effect his schooling. well...i guess they were "somewhat" right, because right after that....he asked me to teach him to read... i told him i wouldn't teach him to read because he was only 3, so he taught himself and is now reading at the level of a late Kindergartener/early first grader and has 2 more years before he can go to kindergarten.

so now i have a 3 year old academically ready for school, but i'm not sure how those sensory issues will work out.i am going to have him screened through the gifted preschool program. but i am not sure they will want to help him either. as a mom, i know i can not just wait 2 years and then send him to school like a typical kid, because he is exceptional, in 2 ways.

I don't have any advice, but can tell about my experiences with my DD12.

She is extremely sensitive to loud noises, hates wearing socks, long-sleeve shirts, pants of any kind, and shoes. Now that its winter and cold out its a daily struggle getting her into weather-appropriate clothing. When she was little she would cover her ears and hide if someone was yelling (I learned quickly that yelling is a bad idea, but people we visit do yell). If loud noise is prolonged (screaming infant) she will still cover her ears and if the noise continues and she can't get away (long car ride) she'll start crying herself. I've got to say that gets frustrating for me.

There are comical moments though- I should take a picture of her vacuuming sometime . She lays one ear on her shoulder while covering her other ear with her free hand as she runs the vacuum.