talk to me about sensory integration disorder

[gg142]

Hello!

so it seems like this is the main reason for delays in my little girl, she is the under-aroused type, so she seems shy but in fact she is probably in sensory overload most of the time.

Anyone here with this type of diagnosis that can share OT tips and what worked for your children?

thank you so much!

GG

[Lecka]

My son has under-arousal in some things but I haven't found anything really fruitful. I don't think it is too much of a problem for him.

 

He has a couple of main things. One is he is under-responsive to pain. This means we are working on talking to him about boo boos and owies. It is hard for him to understand, so I have a little thing I say to him about "owie." We want to start here. We are looking for him being able to recognize pain, communicate when he is in pain, and understand when others are in pain. He has come some way. We started with just labelling very simply when it comes up.

 

Then he is under-responsive to heat and cold. That is more for me to be aware of.

 

Then he really likes to be wrapped in blankets. I spend time cuddling him every morning. I we are out and I see him start to "shut down" I take him to a quiet corner and cuddle him tightly. After a minute he is okay again.

 

I also know he likes enclosed places. At home we has pillows for him. Also he likes to get in a box filled with stuffed animals. At OT he liked being in a little child tent and he liked being in a ball pit. I feel like the box of teddies is our version of a ball pit. We drape blankets to be like a tent, or let him burrow in pillows.

 

However at this point his sensory issues are a lot more minor than what I see other kids have. This is not an area where he has a lot of challenges.

 

I have has the "out-of-sync child" books from the library and gotten some ideas from them.

 

I have actually taken him out of OT bc I don't think it is a high priority for him right now. But those are the things for him. If I make sure he gets his cuddle time and some time in an enclosed space, I don't think I need to worry about it more right now.

[gg142]

thank you, the fact is we just discovered this, her main issue is a major expressive speech delay. Now she is showing to have problems with receptive that are related to processing longer sentences.

She does not have a lot of other issues that she seems to cope poorly with, but from my understanding of SID it can be a reason for language delays as it slowls down the processing of everything including executive functions (she for example has issues in recognizing she needs to go to the bathroom in busy places, she does well at thome though).

I have the book and I am not loving it...I try to read it again

thank you!

[PeterPan]

Once you start talking a kid with sensory, you want to sort out whether that speed delay is a developmental delay or motor control (apraxia). SLPs often don't diagnose the apraxia, and it benefits from a totally different treatment. And no, I wouldn't blame SID for the speech problems. It's more likely that they go *together*. My ds is high stim like me (the term the OT used), meaning he wakes up very alert and goes hard. My dd is the total inverse and what the OT described as low stim, waking up VERY SLOWLY. Like I allow 2 hours every morning for her to wake up and get going, and I keep us very far apart during that time. ;) But like Lecka's, my ds doesn't feel pain if he cuts himself, etc. So stim level and sensory are different but interconnected. My dd, on the other hand, is extremely sensitive to touch, etc. Gets kind of interesting when my bustling boy gives his version of a playful tap to the girl who thinks she just became a whipped Roman slave. :D

 

Anyways, please don't assume the speech is being caused by the sensory. It's more likely there's a separate thing they aren't diagnosing and the two just occur together. We did stuff for oral sensory for my ds, and he still mouths some. When you use muscles, you improve proprioception (sense of self in space, awareness). So they go together but the sensory is not *causing* the speech problems. If the speech problem is due to motor control, apraxia, you're very unlikely to get it properly diagnosed unless you go to an expert. This makes me hot, so I have to be careful. You'll have idiots say they can't diagnose the apraxia (motor control problems as the cause of your kid's speech issue) until they start to talk. So effectively they admit they can't treat it, and then when the kid has speech problems they'll diagnose retroactively that the problem was praxis. If they had actually KNOWN about apraxia and how to demonstrate/elicit it, they could have diagnosed it at 18 months! Burns me up. Lots of things make me hot.

 

If the problem is apraxia, then you back up and work on motor control. PROMPT is the best therapy for that. That thing with the longer sentences could be lots of things. They say a shocking percentage of girls with adhd will turn out to have CAPD. You're always wise to consider having her hearing tested and to get her screened for it. But there are also issues with how the brain organizes words and meanings, processing speed (how long it takes them to process that sentence you read/said), working memory (whether they remember it two seconds later), learning style (kinesthetic learner who doesn't remember unless they're doing, may need to repeat back the sentence to remember it or be doing something with their hands), attention (wasn't focused or interested so not attending mentally), etc.

 

And yes, my ds4 is having a lot of issues with wetting. He's just too busy to break himself. He'll tell you he doesn't have to pee, and 3 minutes later he's screaming that if he doesn't go NOW he'll bust. I think that's partly that ability to self-regulate and transition (I'm doing so I don't stop) but also a dab of sensory (doesn't feel it till his bladder is SO full). He's still wetting at night too, so he wears night night pants (diapers, but soon will have to switch him to Goodnights).

 

Back to this speech thing a minute. Often kids with apraxia will have cherub cheeks from the low oral tone. So there you see the oral tone is low because the motor control isn't there to help them speak and use the muscles properly. We had a thread a while back where we posted pictures of our kids and their cherub cheeks...

[gg142]

thank you, we have assumed for ages she was apraxic (she is low tone and had low facial tone), in the UK I was not able to find any PROMPT therapist. We have been doing lots of oro motor stuff, the thing is, she doesn't have ANY of the apraxic errors, she can pronounce things very well, she doesn't have any inconsistent error. What she has is an obvious word retrieval issue (you just need to give her a very small hint for her to know the word) and she is showing issues with processing 3 key words commands that apparently should be mastered at 4.

The ST here say she has a language processing disorder, but it seems it is more an overall issue with processing.

Her hearing test was fine, in fact was too good, so yes we have been trying to figure out CAPD but they told us until they are 8 you cannot formally test them. They did an auditory discrimination test and she did fine.

 

She has started talking a lot more since 3 weeks ago when we finally found a stable that let us ride horses and also we started the integrated listening system, this is to me pointing to a processing issue.

 

We are continuing somewhat speech therapy but I wanted to try the ABA-VB approach as my child does very well with repetition and multi sensory learning as well as with praises.

 

I am a bit shooting in the dark trying to figure out what else can be addressed that would help the speech

thanks so much for brainstorming with me!

[Lecka]

I also would think the SID is independent from but related to processing.

 

So see what situations are where her processing seems to be impacted. Higher demands can make processing more difficult at the same time as the sensory issues showing up. But maybe don't assume they are lumped, bc maybe you can have signals that use her easier processing mode (visual, touching her arm).

 

Work on language in the ideal environment, and then be aware in the less ideal ones.

 

It takes a while to figure out and develop strategies.

 

I definitely do the things of getting attention with a signal, speak slowly and clearly, use few words, etc.

 

Going into an environment I know is hard, I prep all expectations before we get there. I don't expect to be able to do a lot of verbal communication once we are there. I do a lot of pointing (that I have taught when in a better environment).

 

If she is good at copying, then teaching her to copy others is an option. I don't like it, on one hand, bc it is stressful on kids. But on the other hand, it can work out. My older son is very good at copying other kids and sometimes it just looks like he is not paying attention on purpose when he is not able to successfully copy (this is much improved).

 

My younger son's pain awareness seems better than it used to be. I think for him being able to communicate about it helps him be more aware. Or it could just be that he is getting older. Probably a little of both.

[PeterPan]

She has started talking a lot more since 3 weeks ago when we finally found a stable that let us ride horses and also we started the integrated listening system, this is to me pointing to a processing issue.

 

 

 

When I first started researching apraxia, I came across a website where a lady was saying her GIRL (gender is significant here) made a huge jump in speech when they started some listening therapies for CAPD. You can have both apraxia *and* CAPD also. So I'm noticing you started a listening therapy and got gains in speech, and that's probably a sign of the way to go.

 

So you're in the States now or UK? There are SLPs who specialize in expressive language. A good PROMPT therapist might be able to refer you to one. Our therapist does the motor control and passes off the expressive language issues to a different therapist. So if yours isn't helping, definitely keep looking.

 

And btw, they diagnose apraxia by motor control. There's a separate test for it, the VMPAC. There are patterns in the motor control (how they round, move their jaw, etc.) and it's not really about articulation.

[gg142]

so we are in the UK, totally different ballpark, services have been a nightmare!

We are trying to move back to the US and I have located PROMPT therapists there.

Re: apraxia...she has hypermobility, our jaws (I have it too) are very hypermobile click and move out of allignment, that's why I was thinking PROMPT would help to teach her the right movements.I write down the VMPAC, i never heard of it.

I am flying solo here...no-one believes me, the ST did not even know about listening programs or horse riding...it's awful!

 

I was able to block a spot in a language enrichment preschool in PA for the fall with the assumption we will be moving...pray for us!

 

ADDING on to this: her processing is mostly impacted when it comes to speech, complex tasks (can you find the boy that is NOT climbing on the stairs in this picture? can you give the cat a sandwich, an apple and a banana) that require working memory. making patterns for example etc...I was reading elsewhere that several of these tasks are mastered around 4 yr of age, she is not even 4, but they were the reasons for which she failed the speech tests.

[PeterPan]

I know, and I feel horrible for people in the UK. Worse, I feel horrible that our idiot gov't is trying to do the same thing to OUR country, but we won't talk about that. :cursing:

 

Anyways, I can't remember which person in the UK I was talking to, maybe it was you or someone else, but I actually mentioned that plight to our SLP when we were there Monday. She's an instructor and she said basically to get someone to come over to the UK and teach PROMPT all you'd have to do (as the consumer) is help line up a *location*. She said if they have a contact person to line up the location, they'll advertise and make it happen. If you're moving soon, that doesn't help you. Nevertheless, there is actually that option for someone who is stuck and who wants to try to bring PROMPT to the UK. For location, she said a room with space for 25 and an LCD projector. I assume it should also be near a major city or airport. A university classroom is typically the right set-up.

[gg142]

praises of the integrative listening system!!!

This is really helping her with toileting!

she is going daily, her stools are normal, we do not need any laxative (this is very unsual for her due to the low tone)

she is also having a lot less wet accidents, says when she needs to go and hold the pee until we get to the toilet (again unsual, typically she would tell you pee pee when she is doing it).

 

So far these are the improvements we had, it has only been 10 days but everyone has noticed at preschool too.

So the processing was in the way for toileting too, poor little baby and noone so far has been able to advise on this (we saw 2 dev pediatrician, a normal pediatrician, a ped urologist, a GP and a number of therapis...yeah...I don't give up...NEVER!!!)

[gg142]

Elizabeth

sorry it did not publish my comment. I am living close to London and it would not be a difficult thing, the problem is to find other parents to pay for this. I am finding that here most people do not want to pay for private therapy, regardless on how bad is the public one.

If we do have to stay longer than a few months though I might ask about it, thank you!