sensory integration disorder?

[Jena]

hi me again, shocker lol

sooo difficult child fell asleep in her shake, well not totally in it yet they were def. one when i returned from the truck to get something quick. i medicated too early. she did get down most of it. jerky me it was long day though. she did her best.

sooo doctor's today said difficult child has sensory integration disorder. i told them i had suspected for years yet compensated at home for her sensory issues. yet once they met her and got history and saw her, how she presents etc. they were like oh yea we gotta hook u up with-a great sensory guy.

so, i looked up the stuff these kids do. i only found Occupational Therapist (OT) specialists work with-them. what do you guys know about this? i gotta get the out of sync kid once i get her eating again hopefully.

is there any medications used or just medications for symptoms? i saw depression and anxiety are one. i gotta be honest last night i sat reading all the signs of it etc. and i thought to myself ok one more thing? or can i possibly swap the bipolar for this? bipolar and that really do look real similar except for the cycling part.

 

[HaoZi]

medications would be for symptoms. I find it to be common in gifted and autistic spectrum people. My daughter and I are both that way to some degree, mostly along the sock seam/shirt tag too loud too bright too crowded too bitter texture tastes too weird lines. I do experience some colors and emotions as tastes and smells, so while it limits me in some ways it also expands my world in other ways. I never thought much about it until kiddo started having serious issues and this will be just one more aspect we have to deal with. Supposedly there are ways to "train" them to be less sensitive about it, but it seems linked to what is termed a "super sensitive nervous system" so it's rather hard-wired in.

 

[ML]

It seems par for the course and not surprising. I'm so sorry for everything you're going through.

 

[Jena]

ML hey how are you?

Haozi you are very helpful and very new. welcome by the way if i haven't said it!

 

[BusynMember]

Hi. My son, who is on the spectrum, had sensory issues and, as far as I know, medications don't help it...interventions do. He's still sensitive to certain things, but he's much, much better.

 

[1 Day At a Time]

Very nice link HaoZi!

Jena, Everyone in our immediate family has this problem. Both of my sons have serious issues (actually husband probably has the strongest issues). Our worst times with the boys were in their early years. We have all had to learn what worked by trial and error, and we all now simply work around or avoid the problems. All of us wear transitions eyeglasses. It's a small thing, but we are all very bothered by bright light and the transitions glasses take care of that (just one example).

difficult child used to throw a huge tantrum every time we would go to a Blockbuster video store (remember those?) Of course, after a while I realized I just couldn't take him there ...LOL But, after he got his diagnosis, I realized that environment had everything that bothered him - it was overstimulation galore. It had bright, bright lights - lots of blaring televisions, tons of videos with bright colors and designs - but worst of all - mirrors everywhere. I think it was a place that caused him nightmares. Chuck E. Cheese - forget about it. That's a place I can't even tolerate.

We've never fought the food battle with difficult child. His food choices are consistent and extremely limited. Yet, he's 6' now. Yes, he's very slender, but not in an unhealthy way. He takes a good multivitamin every day and we just trust in him to eat when he needs to. Traveling is very difficult for him. Often he just skips meals. However, we went on a trip two weeks ago and he suggested ,on his own, that he would try to eat a piece of pizza. Believe me, this is huge!!! He has never eaten pizza before, and he's 19 years old. This gives me hope that time and experience will help him move along.

I was also an extremely picky eater as a child - and my problem intensified when I reached adolescence. (I honestly believe that hormones intensified the problem). The summer of my 13th year, I grew three inches and lost 20 pounds. When I went back to school in the fall no one recognized me, and I took lots of teasing. It is those very experiences that have guided me with difficult child's food issues. I've grown up to be a healthy person of normal size, and I see that he has as well. My parents made food a huge issue ( I don't blame them, they were doing the best that they knew how); and I always knew that I would never do that with my children.

Hang in there Jena , difficult child is going to have to find her own way around that food issue. Sometimes, kids feel like food is one of the few areas of control in their lives. I think they need to have a little permission to learn about it in their own way. I know just how worried you are, but hunger eventually makes even the most reluctant eater take a chance on food.

Valerie

 

[HaoZi]

Kiddo and I go round and round on the food thing. She also does the typical kid thing of loving some food intensely for a while and hating it as soon as you find a great sale and stock up. Can't judge her, I'm the same, most of the foods we will eat are close to the same, but not all. If they'd had these nice high-fiber snacks when I was little it would have saved me a lot of pain (literally). I love those Live Active sugar free puddings, low-cal with added fiber and easy to get most kids to eat. Now if only I could get her to like quinoa and eat oatmeal again.

 

[Shari]

difficult child 1 had mild sensory issues, looking back. I had major ones as a child. In some ways, still do. Particularly clothing. I wore shorts in the summer. Period. There was no switching back and forth, and remember the battles I put up when it was time to change to pants. ugh. Socks....dont even go there. And fabrics...

argh. I make myself frustrated, just thinking about it.

Wee has Sensory Integration Disorder (SID), also. He needs a lot of heavy input. He saw an Occupational Therapist (OT) for 4 years, until they moved on, and it helped. Since then, we've kept in contact with the Occupational Therapist (OT) and she gives us direction to work with him at home, since ots are hard to come by here. Clothes? When we find something he'll wear, we buy 10 of them. He can't stand stiff fabric, and can't work buttons, so its pull on pants, usually in the shiney athletic material. He wears one brand of socks. And shoes? OMG. He wouldn't wear socks or shoes for years (absolutely would not put them on or leave them one). Now, he will, but he wears one pair of shoes, and only one pair of shoes, until the things are literally falling apart. Then finding the next pair is a massive search that results in us buying 2 or 3 pair before finding a pair that can stand the test of time and he can tolerate to wear for the duration of school. We give away a lot of very nice shoes, worn 3 times... But he will literally wear them until his feet poke thru the bottoms of them...slightly resistant to change.

 

[TiredSoul]

I do experience some colors and emotions as tastes and smells, so while it limits me in some ways it also expands my world in other ways.

HaoZi,
I am curious about this. Can you explain this more?

 

[HaoZi]

I'm not sure I can explain beyond that. Certain situations or emotions have certain tastes or smells to them, at least to me, irregardless of what is around me or what I have eaten that day. I couldn't tell you if it's somehow memory related (as smell and memory are closely linked) or a cross-circuit in my brain. It's not overwhelming, but I think I was in high school before I realized that was not a normal thing for most people. You may hear gifted people (and esp gifted kids) mixing metaphors, and sometimes (if not often) it is because they actually experience it in this way. If I say "This just doesn't taste right," in regard to a situation, it's because I am really tasting it, and yes it does have its own taste to me. Sensory Integration Disorder (SID) sounds a more expanded version of such. I'm also more sensitive to colors triggering emotions, or perhaps just more conscious of it than most people, if a little off the beaten path. It's known that certain colors are better for interrogation rooms, or grocery stores, etc., but I tend towards different reactions to those same colors than the people they studied. Ditto for aromatherapy, in which I have discovered memory is very closely linked for me. If I describe a certain color as soft/cold/etc., it's not because of the visual impact but what I would expect it to feel like when I touch it.

 

[TiredSoul]

I'm not sure I can explain beyond that. Certain situations or emotions have certain tastes or smells to them, at least to me, irregardless of what is around me or what I have eaten that day. I couldn't tell you if it's somehow memory related (as smell and memory are closely linked) or a cross-circuit in my brain. It's not overwhelming, but I think I was in high school before I realized that was not a normal thing for most people. You may hear gifted people (and esp gifted kids) mixing metaphors, and sometimes (if not often) it is because they actually experience it in this way. If I say "This just doesn't taste right," in regard to a situation, it's because I am really tasting it, and yes it does have its own taste to me. Sensory Integration Disorder (SID) sounds a more expanded version of such. I'm also more sensitive to colors triggering emotions, or perhaps just more conscious of it than most people, if a little off the beaten path. It's known that certain colors are better for interrogation rooms, or grocery stores, etc., but I tend towards different reactions to those same colors than the people they studied. Ditto for aromatherapy, in which I have discovered memory is very closely linked for me. If I describe a certain color as soft/cold/etc., it's not because of the visual impact but what I would expect it to feel like when I touch it.

Thanks! Very interesting. (I didn't mean to hijack the thread)

My son the other day was listening to the different ring tones on my phone and talking about colors - like that one sounded like green, or that one was white. I couldn't understand what he meant, but my mom said she did. He is also very sensitive to smells and almost everything toasted tastes burnt to him. He only eats a few different things, but of course likes all sweets. I am not familiar with a lot of this sensory stuff. I find it very interesting.

 

[susiestar]

From what I have been told by psychiatrists, tdocs and Occupational Therapist (OT)'s, many, if not most of the people with various autistic disorders have sensory integration disorder. I have quite a few sensory problems myself, including food issues.

the primary therapy for Sensory Integration Disorder (SID) is brushing therapy combined with joint compressions. You MUST be trained by an Occupational Therapist (OT) because if done wrong it creates real problems. Once you are taught you do it at home and it is easy and usually fast. For us it took about three minutes each time, if we were going slowly. You use a very soft brush, like a surgical scrub brush, and brush the body in a certain pattern. It can be done over clothes or on bare skin. After you brush you gently compress the joints in a certain pattern. To my kids, and myself, it feels AWESOME. It can do incredible things.

The first time I saw it the effects blew me away. The Occupational Therapist (OT) had thank you sit at a table and start to cut something with scissors (he was 5 and not good with them). He said he was no good because he couldn't cut on the line, he was stupid, etc... (NOT prompted or asked anything). The Occupational Therapist (OT) did joint compression on his shoulders and head and all of a sudden he was cutting better AND saying positive things about himself!!! She did NOTHING other than gently squeeze his shoulders and head!!! NOTHING!!! It has made a HUGE difference in meltdowns with thank you, and even calms Jessie down at times.

The author of out of sync child has a book called "the out of sync child has fun" and in my opinion it may be more useful to you. it provides FUN things to do that help all sorts of sensory issues. It has ways to do them cheaply, and lots of tips/tricks. I have gotten a LOT more use of it than the first one. The first book is well worth reading, but the second is more day to day useful, in my opinion.

If you can get her into an Occupational Therapist (OT) for an evaluation quickly, you can learn how to do the brushing. The brushing therapy is AWESOME for helping anxiety and might help her drink her shakes easier. It is a big help with my kids wehn they get anxious and/or upset. So it might be useful to tackle that if you can get into someone in the next week or two. We didn't have a long wait once we found an Occupational Therapist (OT) who could do the evaluation. It took maybe an hour to do the evaluation and training, 90 min at the most.

This is definitely something to pursue to help difficult child!!! Brushing is PROVEN to create new pathways in the brain to help the body use sensory input, and it uses NO medication to do it!! (and isn't THAT rare!!!)

 

[HaoZi]

Thanks for the info Susie, I'll certainly look into that for mine and hopefully it can help Jen's difficult child. Always nice to find something easy and helpful that's been overlooked.

 

[Jena]

susie remember years ago we talked about this?? i began the brushing thing and heavy blankets at bedtime?

 

[Estherfromjerusalem]

HaoZi, that's interesting about smell and memory being closely connected in the brain. Sometimes, not very often, it happens to me that I smell something that in one "whoosh" takes me back to early childhood, or to an experience that I have totally forgotten, in the most vivid way. Very interesting observation.

Love, Esther

 

[HaoZi]

Yes, the area of the brain connected to memory is very closely linked (physically) with the area for smell reception in the brain, so it's not surprising at all. The smell of coffee is comforting to me because it reminds me of Grandma's kitchen, and I can still remember the smell of the perfume she gave me when I was young. Could be those of us with Sensory Integration Disorder (SID) just have more connections in some areas of the brain than others. Maybe we're evolving differently

 

[susiestar]

Jen, i will tell you EXACTLY what I told you then. DO NOT DO THE BRUSHING UNTIL/UNLESS YOU HAVE BEEN TAUGHT IT BY A CERTIFIED Occupational Therapist (OT)!!! I remember that you were using a hairbrush and going over her arms and legs. While brushing SEEMS simple and easy, if you do not do it the right way you can CAUSE more problems than you help. Not kidding. Not joking. Not overstating. The Occupational Therapist (OT) who evaluation'd thank you and taught me said that it took months to undo problems that one client had because her mom tried to figure it out herself. The books all say that too.

So even if you have to find the school's Occupational Therapist (OT) and beg them to show you and let you buy a brush from them, do NOT do this with-o the right brush and with-o proper training!!!!!

It may be calming and relaxing to use a hairbrush on her arms and legs, but it is NOT going to give you the benefits of brushing therapy done properly. It really IS important to use the right brush and the right technique.

 

[svengandhi]

Have you ever read "The Out of Sync Child?" I took it out of the library when difficult child was younger. He doesn't have it, though H and youngest boy have very mild symptoms (they can only wear certain socks - if I don't have the right socks for youngest boy, he throws a fit. When our washer wasn't working, I had to go out and buy his socks or he wouldn't go to school. I have a friend who has a son with Sensory Integration Disorder (SID) and she said this book (which I told her about) has been her Bible in dealing with his issues.

As for the defiance/anxiety, I see that in my difficult child. His issue is writing, especially things that are personal. He would rather fail than look bad so for years, the school just labeled him ODD and tried to force him into BOCES. BOCES offers great options and my oldest son attended one of their HS's, so it's not that I am against them; I'm actually a big advocate of them. It was just not right for difficult child, whose eventually diagnosed anxiety needed to be dealt with differently.

I agree that your daughter has a high level of anxiety but it needs to be dealt with medically. With my son, all that happened was that he failed English every year in middle school - his life was not in danger so I could sort of sit back and see what would happen. in my humble opinion, though, you told her she would go to the hospital with the first failed shake and I think you should take her. Medical is different from psychiatric, different players, different coverage. Try one of the children's hospitals. We're not allowed to name names here but I would highly recommend the one on the Nassau-Queens border as it is affiliated with a very good children's mental health clinic.

Good luck to you and your entire family.

 

[Sheila]

Sensory Integration Disorder (SID) can be a serious problem. It often presents as behavior problems when in actuality, it's sounds, smells, textures, etc., irritating the child non-stop. As with other disorders the severity can range from mild to severe.

The Out of Sync Child by Kranowitz would be helpful for you. I highly recommend it.

An Occupational Therapist (OT) with-a subspecialty in Sensory Integration Disorder (SID) and therapy helped us.

It's been years since I've researched this disorder to any extent. Unless things have changed, there are no medications for Sensory Integration Disorder (SID).

 

[Jena]

that's good! no medications for a change yay!!

i have work to do with-current hospital, than slowly bringing in reg. cbt therapy and this week i'm making a call for an Occupational Therapist (OT) person. the brushing might just help her even with-the eating. alot of good info here in this thread.