Sensory Integration/Perception Disorder

[michele]

My 7 year old son has been getting OT for about three years. I wish I would have know he would have qualified earlier because he has always seemed to have fine motor delays/hyptonia since preschool. The OT also works on sensory motor issues. He gets OT twice a week. He also has horrible meltdowns at home and we have incorporated the sensory choices into a behavior chart. He is to come home from school and pick an activity that would calm him such as trampoline, swings, bike, music, ball, and do it for 15 minutes alone. We also use the brushing technique. He is not a kid who likes heavy work or crashing but he does do well with swinging and jumping. He also has been tested for visual motor perception delays and is behind. The problem is the school will give him OT for the handwriting because that effects his class performance. Convincing them that the sensory motor effects him is much harder to do. If the Ot on here has any ideas on how to get the school on board about sensory issues I would love to know how.

I think he builds up frustration from holding it together all day and just explodes when he steps into the house. I give him a sticker chart for using the techniques and he gets to pick from a treasure box once a week if he does them. I also have him using visual symbols to go through his AM and PM schedule and keep him on track. His transistions are hard. He does not like certain smells like lipsick and gum. He doesn't like certain textures of food like whip cream and jello. He gets overwhelmed in stores that are big and have florescent lights. He does have trouble with his attention and staying focused. That they do see at school. His organization is also weak and he turns in his papers very messy and wrinkled. I would say his handwriting and putting things on a line are his biggest struggles and then his focus at school. At home it is his temper and anger management. He takes things wrong and thinks we are mean! That is a full time job for me! Also he is very loud!

 

Michele

[thereishope]

My son would have issues when seasons changed and the attire would change. Luckily, this time we're okay. It shows me much of it was PANDAS related. When he was in his last episode he would only wear long sleeves, his spring jacket and his hood up. He would never take that hood off. We eventually graduated to hood off in stores, but wear a baseball hat in stores. Then no hood at all, but always a baseball cap, now he can go back and forth to whatever suits him for the day and he has no problem switching it around. Still, now that fall is here and that hood goes up sometimes, many sad memories coming flooding back.

 

I remember having to explain the to the peds' nurses that it was like his protection. Like a force field for him. Not to force him to take it off. All staff in peds' offices really need to take a class every year about being sensitive to kids and realizing sometimes you need to bend the rules.

 

What worked for us was baby steps.

 

 

 

My daughter has panic attacks around getting dressed. She will now only wear shorts and t-shirt., crocs..no socks, no jacket,no long sleeve pants or shirts. Problem is we live in Denver, Fall is here and it is starting to get very cold.

 

At first we thought it was her jt. pain,but now believe it is her OCD and not SPD.

 

Ladies, does anyone have any suggestions.? Getting dressed is like climbing a mt. I have wasted and spent alot of money on shoes and clothes---J

[dcmom]

OTSmith-

 

My daughter had the same issues. Her first episode was really tough with the clothing. We ended up feeling it was more important for her to be out, at school or activities, happy and participating- than in appropriate clothing. (She was in kindergarten, and didn't really care if she was in pjs, and neither did the other kids, it would have been much harder if she was even a little older.) If she had to wear her pajamas- she did. I was (am) very concerned about self esteem, so didn't want to make a huge deal over it, and like Meg's mom said, I could see her heading toward agoraphobia, so I just wanted to keep her going out. We really didn't get into this with the psychologist too much- because by the time we met with her a couple times, it had gone away, thanks to the antibiotics.

 

She was great for a while- wore anything she wanted, and actually had fun picking out outifts

 

Her second episode started with waking one morning, and pulling everything out of her closet looking for something that fit, with a lot of anxiety and irritability. It was all back again (rages, pickier eating, toileting issues, etc). Steroids and antibiotics helped this time.

 

Now we are in a low level episode, thanks to (I think) exposure to strep at school. She is not 100%, she can dress every day , but there is stress involved- sometimes worse than others. Her other issues are there to, just at much lower, more manageable levels.

 

She has a new issue- that I believe is pandas (we had a little of it before). She cannot stay in her bed and just go to sleep at night. I think she might be having bad thoughts (witches, etc) that she can't get rid of. If I lay with her, she is okay and falls asleep. I have been getting her to stay in bed in 5 minute increments, and then checking on her, and eventually she falls asleep. I know this is a minor problem- but I am tired and need a little r&r at night. I know others have sleeping issues as well, any advice? (Maybe I will start a new thread).

[nojo]

This is all so interesting to me, because it is all finally making sense. I used to just think it was that I had a picky child. Every season the change is a nightmare, and when we actively have strep we can hardly find things to wear out of our acceptable outfits. Clothing was so stressful, even when she bought it with me, suddenly, it didn't feel right, and she couldn't wear it. We would have nothing to wear at all. It wasn't until recently that I noticed the pattern with the clothing and shutting down on wearing clothing as a sign to go get our strep test. One of our more recent rages that finally made the light go off for me was when we were traveling and we didn't have any other clothing choices. The screaming and complete panic she was in finally clued me in that she did have strep, and we really can't go on living like this. It was still the summer, we hadn't even started the heavy strep exposure season!

 

The new pediatrician that we saw on Friday that prescribed the prophylactic antibiotics was really observant. Maddie was freaking out about putting on a paper gown, she couldn't stand the noise, or the way it feels, so the doctor let her put on her clothing and the doctor noticed how she wears her socks inside out because of the seams. (We wear other things inside out also because of the way they feel) Now that we are going to be on antibiotics all of the time, hopefully it will help. Before, we would test positive, do our 10 days, wait a week, flare up again, and start antibiotics again. We were on antibiotics so much, but not enough, so it is hard to tell what is becoming her part of her personality. Fortunately, or unfortunately as the case may be, we are on prednisone quite alot each winter because of our asthma. It has made it harder for me to really see the pattern as clearly as I was able to over the summer. Over the last 2 - 3 months it has become easier for me to recognize the pattern of a flare up now, especially the clothing and also shutting down with eating.

[thereishope]

My son was also border line agorophobic with his last episode.

 

He also had times when he would have bad thoughts while falling asleep. Let's say monsters (but it was others stuff) would get into his head and be mean to him. I sat at his bedside demanding his brain to stop it and telling those bad thoughts to leave him alone. Kind of like when the person with OCD has to talk back to OCD, but I was the one doing the talking for him. I'd have to go into his room maybe 3-7 times doing this, but in a matter of an hour or so, he'd fall asleep. I told him to tell those thoughts to leave him alone. he actually did try, but he'd always say it didn't work he wanted me to do the yelling.

 

When I did that, I warned him I was going to sound a little mean but I was being mean to those thoughts and not to him.

 

 

OTSmith-

 

My daughter had the same issues. Her first episode was really tough with the clothing. We ended up feeling it was more important for her to be out, at school or activities, happy and participating- than in appropriate clothing. (She was in kindergarten, and didn't really care if she was in pjs, and neither did the other kids, it would have been much harder if she was even a little older.) If she had to wear her pajamas- she did. I was (am) very concerned about self esteem, so didn't want to make a huge deal over it, and like Meg's mom said, I could see her heading toward agoraphobia, so I just wanted to keep her going out. We really didn't get into this with the psychologist too much- because by the time we met with her a couple times, it had gone away, thanks to the antibiotics.

 

She was great for a while- wore anything she wanted, and actually had fun picking out outifts

 

Her second episode started with waking one morning, and pulling everything out of her closet looking for something that fit, with a lot of anxiety and irritability. It was all back again (rages, pickier eating, toileting issues, etc). Steroids and antibiotics helped this time.

 

Now we are in a low level episode, thanks to (I think) exposure to strep at school. She is not 100%, she can dress every day , but there is stress involved- sometimes worse than others. Her other issues are there to, just at much lower, more manageable levels.

 

She has a new issue- that I believe is pandas (we had a little of it before). She cannot stay in her bed and just go to sleep at night. I think she might be having bad thoughts (witches, etc) that she can't get rid of. If I lay with her, she is okay and falls asleep. I have been getting her to stay in bed in 5 minute increments, and then checking on her, and eventually she falls asleep. I know this is a minor problem- but I am tired and need a little r&r at night. I know others have sleeping issues as well, any advice? (Maybe I will start a new thread).

[Megs_Mom]

We have let Meg pick out her own clothes for years! That is one battle I just don't care about.

 

What you want to distinguish is the difference between sensory issues and OCD issues around clothing. They can both be real, and are treated slightly differently.

 

If you feel that you have a sensory issue, I have an email for that topic that I'd be happy to forward to you - it's the sensory plan that worked really well for our daughter, so that she can wear the clothes that she WANTS to wear. PM me if you want it & I'll email it to you.

[faith]

Vickie, you reminded me about the baseball hat issue. that's a big one here too. the hat is always worn except when he enters the school building cause they don't allow it, and we don't allow it in restaraunts. alot of fussing about that hat. if my husband demands he not wear it today, its a messy battle.

 

dcmom - we have the sleep issue too. my son is 10 and he cannot/won't/doesn't want to? sleep alone in his room in his bed. we've tried it all. sometimes it takes threatening and a very stern warning. but he always wants to sleep with us. I think its like a security blanket for him (and btw, he still has to sleep with his baby blanket that is now basically a shredded rag).

 

Also a little hoarding going on, he picks up useless items he finds on the floor and will put them in my purse while we're out. doesn't ask for it later, just likes to take them home. When I clean out my purse, I sometimes find rocks, tags from clothing items, beer bottle caps, etc..... yikes. if he sees something in our garbage that I have managed to throw away and its his, he gets agitated and takes it back.

 

Most of this stuff I don't really relay to anyone, not even the doctors, I'm usually so focused on the tics, but wow, I'm realizing he does alot of stuff in that area. I usually just chalked it up to these being his quirks, and maybe joke about these different things when chatting with other moms. Their kids have some quirky things going on too, but maybe just one from column A and one from column B,.... I got the whole menu.

 

p.s. after our sniffly playmate ordeal of yesterday, my son sat up in bed last nite (yea, with me right beside him, lol) trying to clear a clogged nose. This morning he was very tired and gave me a hard time about going to school. even in the car he was begging me to let him not go to school. not because he's sick, just had some anxiety. don't know what this is about. he doesn't like the school part of school, but always wants to go. I hope he's not getting paranoid about his vocal tic, because he is mentioning to me that a few kids have asked him why he does that or have told him to be quiet.

 

Faith

[Megs_Mom]

Many tics can be actually OCD compulsion. Sounds like he has a good bit of OCD listed below (hat compulsion - you can tell, as he is anxious if interrupted), seperation anxiety, and hoarding (which is also OCD). All of this responds well to ERP (exposure & ritutal prevention), and you may find out that some of the tics will respond as well. You may want to be a detective yourself, and start keeping track of anything, that if interrupted, causes anxiety. Very likely, you are interrupting a compulsion. If you read "What to do when your brain gets stuck" with him, he can also be a detective. Good luck!

 

Vickie, you reminded me about the baseball hat issue. that's a big one here too. the hat is always worn except when he enters the school building cause they don't allow it, and we don't allow it in restaraunts. alot of fussing about that hat. if my husband demands he not wear it today, its a messy battle.

 

dcmom - we have the sleep issue too. my son is 10 and he cannot/won't/doesn't want to? sleep alone in his room in his bed. we've tried it all. sometimes it takes threatening and a very stern warning. but he always wants to sleep with us. I think its like a security blanket for him (and btw, he still has to sleep with his baby blanket that is now basically a shredded rag).

 

Also a little hoarding going on, he picks up useless items he finds on the floor and will put them in my purse while we're out. doesn't ask for it later, just likes to take them home. When I clean out my purse, I sometimes find rocks, tags from clothing items, beer bottle caps, etc..... yikes. if he sees something in our garbage that I have managed to throw away and its his, he gets agitated and takes it back.

 

Most of this stuff I don't really relay to anyone, not even the doctors, I'm usually so focused on the tics, but wow, I'm realizing he does alot of stuff in that area. I usually just chalked it up to these being his quirks, and maybe joke about these different things when chatting with other moms. Their kids have some quirky things going on too, but maybe just one from column A and one from column B,.... I got the whole menu.

 

p.s. after our sniffly playmate ordeal of yesterday, my son sat up in bed last nite (yea, with me right beside him, lol) trying to clear a clogged nose. This morning he was very tired and gave me a hard time about going to school. even in the car he was begging me to let him not go to school. not because he's sick, just had some anxiety. don't know what this is about. he doesn't like the school part of school, but always wants to go. I hope he's not getting paranoid about his vocal tic, because he is mentioning to me that a few kids have asked him why he does that or have told him to be quiet.

 

Faith

[ajcire]

Vickie, I think I was mixing up who had boys and girls. Looks like my observation on that is not accurate.

 

 

My son had horrible physical rages.

 

 

quote name='erica240' date='Oct 4 2009, 06:34 PM' post='40036']

Bronxmom, exactly he doesn't see how it impacts others either. Interesting is that when I am reading here I see a lot of the girls have the phsyical rages and the boys seem to be mouthy and more emotional. I know I am just basing it on what has stood out to me on here. I would have expected to see that the other way around.

[OTSMITH]

Well my daughter has been doing much better since prophlautics. I do not worry what she looks like..I just worry @ the weather. A friend reminded me you do not actually get a cold from beig cold. Colds are from germs

 

It just feels nice to know that we are not alone.

 

My daughters new OCd/tic is chewing visously on her hair. She stoped waving her fingers in the air( like playign piano) and started with this hair thing.

 

Hope everyone starts getting some rest--J

[faith]

OTSmith, what abx are you using?

[EAMom]

Sensory Issue: Megan has become very sensitive to taste & is rejecting many of her favorite foods. She says that they taste wrong. Actual issue: once we understood OCD, she was able to tell me that her OCD was making her think something bad (mostly throwing up) would happen if she tried to eat certain things. So to fight back against the OCD, we would take baby steps to try the food, break up the ritual of AVOIDANCE.

 

I should add that some PANDAS kids can have altered taste sensations. For my dd it happened post-IVIG as part of turning back the pages. Dd complained that "things that should taste good don't" and "my taste buds aren't working right". Fortunately, this problem passed after a couple of days. I asked Diana P. about this, she said her son had that same symptoms (altered taste sensation) during the worst of his PANDAS.

[pixiesmommy]

I would love any help you can offer, either via PM or here where it may help others

 

Pixie's main issues are (not sure if these are all SPD):

 

sunlight (particularly transferring from darkened room to outdoors)

rolling on the floor/spinning/not seeming to be aware of her body spatially - clumsy but also running or flinging herself headlong into things

postures where she buries her head in the couch cushions and puts her bottom in the air

being sensitive and saying things are painful that shouldn't be (holding her hand or laying hand on her shoulder gently, etc)

and vice-versa- falling down and really seeming to hurt herself but not seeming to feel any pain (scraping knee but not crying unless she sees the blood- the visual is the trigger not the "feeling" of it)

sound- she will speak extremely loudly one minute but then have to have earplugs/headphones for "noise" that is normal volume the next minute

not liking to change clothes, bathe, brush teeth, wipe after urinating

 

I'm sure there are more, but those are the ones that we seem to deal with on a daily basis. She also has the taste thing and it has only reared its head post IVIG and we are in week 4 now.

 

Thank you so much.

Manda

[OTSMITH]

We are taking Bicillian shots each month. She has been exposed to strep 3 times AND DID NOT GET IT!!! ----J

[Megs_Mom]

Hi Manda - Ok, I am not an OT, and I would definitely suggest that you need one. Much of the below sounds like SPD. Here are some suggestions:

* Go online and buy "The Out of Sync Child" and/or "The Sensational Child" (sp). They are quick reads and explain all of the Sensory issues - both on the over and under reactive sides (and you can have both) and suggest techniques to help.

* Call your local autism society (no, I am not saying she has autism - but most children with Autism also have SPD, so the society is your best tool to find a good OT for SPD). Ask for references

* Now, I am guessing that the next trick is to get her there - is that right? Ok, so first of all, make the OT appt. Then post about what happens when you try to get her out of the house. I am betting you are dealing with some sensory issues there, and more likely a lot of OCD. So we'll make a plan for that when you tell us more. But get the evaluation appt - sometimes they are weeks out.

* As part of a sensory/OCD "daily plan", we ensure that our dd gets out of the home every single day. And then ideally, is away from me (safe person) for a period of time as well. If it is Agoraphobia, this is critically important. So tell us what is keeping her home.

 

In terms of immediate suggestions for the sensory issues you have listed, You need to make a plan to communicate & test some things with her when she is calm. So get ready for this by making some plans. First of all, you need to explain the concept of HABITUATION. There are lots of ways to communicate this to a child - I send one plan to you via email. Basically Habituation means that if you let your body get used to something, it adapts. If you keep shutting out the sensation before you get used to it, you have to keep adapting over and over. So the example most people use it a cold pool. There are two strategies: jump in, or ease in slowly, right? We all know that the fastest way is to jump in. That kid yells for a second "cold, cold" and then says "hey, it's not so bad!" He has habituated. The other child slowly eases in - and when they hit their belly, it is the worst! And if they run out into the sunshine for 5 minutes, they have to start all over - they can't just go right back up to their belly. You may need to illustrate this concept to her physically. A good way to do this is to have a bowl of cold water & a bowl of really warm (not burning!) water. Feel the warm water first - see how fine this is? Do the cold water first, just stick your hand in for a sec till it is good & cold. Now, try to put your hand into the very warm water. It feels like it is burning! Tell her this is the way it will feel ahead of time. Encourage her to leave her hand in the water until it feels just warm again. That is Habituation! We use this word constantly, always looking for ways to "habituate" to a situation. We even call OT "Meg's Habituation therapy" so that she really understands the word. You want to teach this word in a fun and non-intimidation way. You cannot force someone to habituate - they have to choose it, ,and the first step to choosing something is understanding it.

 

Ok, so then the next thing is "squashing". It sounds like she is already seeking that, with the upsidedown couch mashing thing (it is so wierd, once you learn the language - often their bodies are already telling them (and us) what they really need). Teach her about this when she is calm! This is not something you want to force - you want to help her learn to choose this. Explain that when someone starts to feel frustrated, it can help to play the squashy game. Show her a safe place, like the sofa and the bed (you want a few locations, as you need to get to this very quickly - put it in an easily accessable place). Have her lie on the sofa with her head to the side. Then pile pillows on top of her (you can try ways to make this fun too - do you gently lie these on her? Or does she like the feeling of a pillow fight when you do this?) and then lay slowly on top of the pillows and her. Make sure she is ok at all times, this is a very gentle process, and she should be able to get out at any time that she wants. Use light pressure and ask her if you can squash her more. If she says yes, give her more of your body weight or lightly bounce your body on her. You will quickly learn what pressure works.

 

Now you need to catch "frustration" VERY early in the process. You can't get her to do this when raging (at first). So when you see her starting to get really frustrated over a small thing - then ask her to play squashy. We were amazed by this - she would go in really cranky & come out giggling. We also found that being upside down really really helped. You can acheive this by doing supported headstands on a bed if you can't hold her upside down. Again, practice ahead of time, and see if she likes this. You can hold her legs up, or use a mat & a wall to help. Meg can now do a headstand that you would not believe!

 

Ok, I have to run & wake up Meg , so I'll try to answer more later. Tell us about what happens when you try to leave the house & I'll start sending ideas about that too. Good luck! Have fun practicing squashing!

 

I would love any help you can offer, either via PM or here where it may help others

 

Pixie's main issues are (not sure if these are all SPD):

 

sunlight (particularly transferring from darkened room to outdoors)

rolling on the floor/spinning/not seeming to be aware of her body spatially - clumsy but also running or flinging herself headlong into things

postures where she buries her head in the couch cushions and puts her bottom in the air

being sensitive and saying things are painful that shouldn't be (holding her hand or laying hand on her shoulder gently, etc)

and vice-versa- falling down and really seeming to hurt herself but not seeming to feel any pain (scraping knee but not crying unless she sees the blood- the visual is the trigger not the "feeling" of it)

sound- she will speak extremely loudly one minute but then have to have earplugs/headphones for "noise" that is normal volume the next minute

not liking to change clothes, bathe, brush teeth, wipe after urinating

 

I'm sure there are more, but those are the ones that we seem to deal with on a daily basis. She also has the taste thing and it has only reared its head post IVIG and we are in week 4 now.

 

Thank you so much.

Manda