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Willa:
What you describe is classic vestibular dysfunction. He may have dysfunction with semi-circular canals (SIPT assesses ONLY for this - the canals process rotational vestibular info: spinning) But he also sounds like he has a severe otolithic dysfunction. The otoliths in the inner ear are responsible for processing gravity and linear movement - vertical or horizontal. This type of processing impairment prevents one from knowing where you are in space. I understand completely where his terror came from. People with otolithic dysfunction are uncomfortable in any plane - they cannot even move forward through space (ie: walking) without fear and discomfort. With a problem as significant as Mite's the OT should have started much much slower than on a swing. Movement needs to start on the ground and slowly work up until he is comfortable on the swing.

SI based intervention, done correctly, NEVER creates anxiety or distress for the child. Mite had no business being in that hammock swing. Do you feel that the therapist really understood what was going on for him? Do you feel that the therapy helped any? If not, it was not done correctly. I hope that the therapist took him out of that swing immediately.

At 8 he is just inside the window for the SIPT (for kids up to 8yrs 11 months) but an experienced OT could still use it to assess a child like Mite after that age - since him impairment seems so significant. I just wouldn't do it much after about 9 yrs 6 months. The standardized part is compromised after 8y 11m but the test is still applicable. The SIPT would give you a clear idea of what areas are most affected and, I think, provide a framework for intervention to help with the IEP and accomodations. Teachers listen to the standardized numbers.

You can look for an SI certified OT here:
www.wpspublish.com
follow the links through continuing education or courses, you'll find info on courses for Sensory Integration and then a link for finding therapists in your area. Just start calling and see if you can locate a good one. Just like any profession, you'll find SI certified OTs of differing qualities - some will be great while others are certified but can't interpret the assessment well or generalize the knowledge well. So look for one who does the SIPT often and treats primarily from an SI perspective.

I'm guessing that he has severe somatosensory dyspraxia. And OT from a SI framework can help. When it is done correctly.

Therapeutic Listening MUST be done under the guidance of a trained therapist. You can't just borrow someone else's equipment/CDs and do it at home. There is another program out there called The Listening Program. It needs a therapist supervision also. Please don't try to do it on your own. Check the website for someone near you who is trained. I am fairly confident from what you have written that Mite would respond to this - but please look for a provider.

WG -
nothing specific, I just saw it mentioned for the 143rd time on another board, and wanted to be sure.
Smile -
Trinity

Here's a direct link to the SI certified therapist finder on the certification website:
http://portal.wpspublish.com/portal/page?_pageid=53,83247&_dad=portal&_schema=PORTAL

aiyeeee!! He'll be 9 the end of January!!! rush rush rush. I just called one person listed with that portal. she's not private. so, on I go in the search.

I won't use that listening program, then, unless someone qualified tells me too. It's interesting what people will pass along without knowing they can be doing more harm than good, eh?

Trinity, bless ya!! I hear of Wrightslaw all the time, too. It has been a big help to me, but sometimes there is sooooooo much information, I am whelmed.

what do you mean "she's not private"? Does she work for a school system or something? Is she available through her employer to evaluate? Just ask how much experience they have with SI and the SIPT.

She works for a school district. They are on that site you posted. I asked about SIPT and she said she would email a list of therapists she thought could help us.

you know, I'm still astounded that I never realized how severe things were for Mite. He always just seemed ok. I never noticed that other kids didn't cling to the van door or their mom to get out of the van or clung to railings to descend stairs. I also never noticed that I did those things differently. I wonder if some of it is learned from observing me, but then Rite never did that. I'm just pondering.

I'm also wondering if things weren't so bad and they got worse and I just didn't notice that change. I've been watching old videos to see if I can piece together more of his portfolio -- like him singing "jingle bells" at 11 months. "JeeJee behs! JeeJee behs! Jee Jee WAAAAAAAAAAAAAAAAAAAAAAAAAAAAAy!" clap clap clap Aha! He could clap at 11 months!! That's a motor planning skill, right? But he never waved byebye. hmmmmm.

We are also going in for CT and MRI in the next couple of weeks. We discovered last month that I have spina bifida oculta with a pretty large cleft in C1. The doctor said that it is often hereditary. It is rarely symptomatic but if it is the symptoms sound just like me and Mite and to some degree Rite.

Grasping for straws....

I think you are doing the right thing by investigating whatever might be causing problems. You either rule it out and breathe easier (and keep looking!) or you identify something you can then deal with.

As for the vestibular thing and not looking so bad...that is totally possible. That he never really LOOKED bad to you. It's common for parents to NOT notice the signs that I do as an OT. I'll have parents tell me that their child is very strong but then I see hypotonia and weakness all over. The reason parents don't see it is because children are intrinsically driven to succeed at things, development to task mastery. But when a particular task is hard the child will sometimes skip it. Crawling is a good example. For a child with poor trunk tone and low postural stability, you can walk easier than crawl, because crawling requires a certain amount of stability - it is a slow form of mobility. But if you just lock your hips and legs and keep moving, voila, walking! Even with low muscle tone! And by skipping a hands/knees crawling phase the central nervous system loses out on some pretty important sensory input necessary for development.

And when others in the family experience the same thing, then the "symptoms", if you want to call them that, look okay. Because others in the family are the same. I have mild vestibular dysfunction (I call it motion sickness!) but my kids escaped - they can read for hours in the car and never get sick. But a lot of parents tell me they are the same as their child. I'm sure there must be a genetic component, though one has not been identified. No one really knows why it happens. Jean Ayres just theorized that some people are hard-wired differently.

I don't think that the actual SID is getting worse. I think the presentation is worse. As Mite has to meet more difficult challenges and he is unable to compensate using his intellect, then tasks are showing up as being more difficult. I see this a lot. I get children referred to me at the age of 8-10 years who have never even been identified as having SI disorder or even any particular problem. And the presentation is just so obvious to me. It's just knowing what to look for.

I hope the testing goes well for all. Hopefully anything that turns up will open doors to answers. I'm sorry for your distress and certainly empathize as both an OT and a parent. Hang in there! You are moving in the right direction.

will si ot help at this point? have we missed the boat if this is the problem?

I got a list from that ot I contacted yesterday. Unfortunately she didn't send it until after 5 our time. So, I'll have to hit the list tomorrow and see if I can get him in asap for testing.

what can he be tested with after 8 years 11 mos?

Yes, SI treatment can still help him. So can the Therapeutic Listening program. And interactive metronome, should he be able to participate, can be done anytime. It is used with adults all the time. I don't believe for a second that you've lost any window of opportunity.

If I were seeing him, I would still do the SIPT, even after 8y 11m. You can use it, you just have to qualify the results since he is older than the intended age. It sometimes is even more of an impact if an older child scores low when compared to a child of 8y 11m. The examiner just needs to note that in the evaluation, that the standardized assessment used is designed for younger children and the norms being used for comparison are for younger kids. The results can still be meaningful. And it sounds like Mite would still score lower, given your descriptions.

Did you check the provider list at www.vitallinks.net for a therapeutic listening provider? Ask the OTs on your list if any of them do that. And while getting the SIPT done would really help clarify the extent and nature of the SID, he can still be accurately assessed without it by an OT with a lot of SI experience and understanding. So if you find one who seems to understand Mite right off the bat over the phone and is qualified to supervise Therapeutic Listening, but not certified for SIPT, then I would go for it with that OT. Get him started on the Theraeutic Listening.

The Therapeutic Listening activates that vestibular system through the auditory channels. They are one and the same system after all. And the time/space issues can really be addressed by the modulated music. I think you would be amazed at how the listening can impact a child's internal organization and sense of "groundedness" with the world. That alone can decrease anxiety in a child tremendously.

Sheila Frick and Vital Links are in Madison WI. She is wonderful! She developed TL and taught the advanced course I took on the listening program. Are you anywhere near enough to Madison to even see about eval at her clinic? I've sent them a quick email to see if they do evals/consults there. Have you looked at the website yet?