Hey all!

These last couple of weeks have been crazy busy. I'm in a lull and I wanted to ask...

How do you parse out the needs from the intelligence? How do you use the intelligence to over-come the needs?

I think that is where I'm struggling the most in advocating for Mite. The teacher and sped folks just don't get how much the giftedness is part of the "problem"!! They don't know how to tap into it to help him.

and....well, I'm learning that I don't either. I feel like we are losing ground with Mite and its scaring me.

Hi Willa:
I think that I might have some ideas, from an OT perspective, but I'm not sure I know what you are referring to. Can you be more specific or are you at a point where you aren't sure what the specifics are?! BTDT!

When I'm structuring supports for a child I see in OT I use their strengths all the time, to compensate for the difficulties. So a child who has poor verbal skills but responds to pictures might get visual cues like picture schedules or checklists. A child who is visually oriented but can't write a paragraph might get graphic organizers. A child who can't focus visually but has good tactile processing might get manipulatives for a certain task.

Is that the kind of stuff you are referring to? Like how to provide compensatory strategies that pull on his strengths?
Debbie

yup! That's what I'm thinking about. Mite comprehends at a high level (6th to 12th grade), but expresses himself in writing at about 2nd grade (although some measures have said 4th grade 9th month). His sped team is working with him at the disability level (2nd grade) and he's been expressing a lot of frustration with that the last few days. "Mom! I already KNOW about paragraphs and indenting and finger spacing between words. Why is she making me do all that over again?" His verbal spelling is excellent. His written spelling is below age level. He wants to use words like "imaginative" or "mismanaged" and "secluded" but they end up amjntif or missmanuj or seeklud. So, his verbal expression is years beyond his written expression.

His IEp is very needs based, but I feel if he is to move forward we need to make it strengths based. We just don't know how.

He wants to write so badly. This week he was supposed to write a letter to soldiers in Iraq. He tried to write it in cursive. It was pretty much illegible. His teacher told him the soldiers wouldn't be able to read it; so, she told him to print it. He was devastated. He told me "I worked on it so long" and "cursive is so beautiful" and "I want to write it in cursive like everyone else did" and "I want the soldiers to have something beautiful in all the ugliness around them". (yup. but he's not gifted, remember!!)

When we sat down to write it tonight he had an hour and twenty minute melt down. (ugh) That is soooo rare for him. He finally got down to copying his letter -- about 3 paragraphs -- and managed to get it to legible in an hour and forty-five minutes. That's where he wanted to use the words mismanaged, imaginative and secluded. He finally just gave up on all but imaginative.

He wants to write in cursive. He wants to express himself in writing. He wants to be like other kids. He has a huge vocabulary and extraordinary ability to express himself verbally. He's stuck. So, am I. I feel like I'm spinning my wheels. Aren't I asking the same questions over and over again on here? I feel so redundant and useless in this whole process.

I just can't figure out how to bring it together for him and the school just doesn't care.

ok....deep deep breath....ommmmmmm!!!

Well, I personally think that you just very clearly articulated the problem and should print off your response to me and present it to the teachers/sped team! That was a very clear and succinct example of how his disability limits him in regards to his strengths. Have you explained it that way to the teachers?

Here are suggestions I would have for the team if I were the OT on it:
1) first you need to look at two approaches: remediation and compensation. Which are you doing? You need to decide as a team whether you are going to provide services that remediate the deficit areas or compensate for them. Or a combination of both. Since the parent and student are a vital part of the IEP team (see IDEA federal law) then your and Mite's preferences should be taken into consideration. Since he wants to write, then remediation should be part of the IEP, until such time that it can be proven that he won't make improvements or the Mite decides the process of writing just isn't worth it.

2)Remediation: I would look into Interactive Metronome. Have you tried Handwriting Without Tears? What about a pure SI based intervention - has he ever been assessed with the SIPT for sensory integration disorder? You might need to go privately for that one - most school based OTs don't use the SIPT (Sensory Integration and Praxis Tests) and don't/can't provide a pure SI based approach.

What spelling techniques or programs has the school tried? Slingerland and Orten-Gillingham are two names I know of, but not being a teacher I can't really say what the difference is or whether they would help Mite. But what do the examiners who have seen him say? Any recommendations there for specific interventions for improving spelling?


3)Compensation: you need to have Mite's buy-in. He needs to agree to use compensatory techniques AT TIMES in order to produce the work or end-product he desires. In the case of the letter, it would have been great for him to have a computer program such as Dragon Dictate. He could just dictate the letter and the program provides the spelling. It would give him the independence of not having a scribe write what he says. A low tech version of this would be for him to audio record his letter/writing and someone write it out later. At least that way Mite won't feel hampered by how fast/slow the scribe writes his words and he can just let his thoughts flow. And he won't feel like he is so unique - tell him doctors dictate all the time!

From what you say the hardest part must be that Mite is so acutely aware of his difficulties and so stifled by them, in terms of his abilities. But, the flip side of that is that with the right support and encouragement Mite is bright enough to understand how he can accomplish his goals, even if he never learns to write cursive. Eventually that goal won't be so important to him. He will move on and decide that he wants to PRODUCE not struggle with the process. My experience is that even children need to be allowed to work through that self-recognition process. It's a matter of coming to terms with one's own limitations and embracing one's own strengths. People with disabilities have to do this every day. And we all have disabilities to one degree or another. We are all hampered by relative weaknesses and demonstrate relative strengths. And we each need to learn how to make the most of our strengths. And deal with our weaknesses. Mite is just beginning down that road.

For kids, I always talk about how everyone is good at something, but no one is outstanding at everything. I'm sure that Mite could identify kids who can't do things that come easy to him. Maybe that would help him to see his own strengths. Another thought is to see if you have a Center for Independent Living around you somewhere. They are community based advocacy centers run by people with disabilities to serve people with disabilities. Most have a youth advocate on staff, but they all have people with disabilities who do peer counseling and community advocacy. The services are free. Perhaps that would be a place for Mite to meet other kids with LD or other disabilities, and some adults who have succeeded by accomodating for their LD or similar disability. Maybe then he would be able to focus on his own strengths.

Sorry, I got on a soapbox! Stepping down now! Hope this has helped.

Thanks! I'm trying to contact ARC or the Center for Independent Living. They are taking their time in getting back for me.

I agree that Mite needs to decide whether he wants to put effort into the handwriting process or into the creative expression. I need to explain that to him a bit better than I have.

The IEP team at this point is neither remediating nor accomodating. Nor are they teaching compensatory skills. They have offered him some different styles of pens and grips. They provided a Franklin Spell checker for his use at school, but he has to check it in and out with the teacher; so, it isn't always readily available.

He did the Interactive Metronome 2 years ago and got violently ill with vomitting and a migraine (first migraine he ever had) at one of the sessions; so, the OT didn't want to progress with it. He also did 2 sessions of HWT (16 weeks total) with that OT and made no progress, even regressed. So, that wasn't an option. I have since bought it myself and thought we'd give it a try here at home. It seems like such a sensible program. I am going to approach the OT again and see if we can try the I.M. again.

Mite is very keenly aware of his differences and is intensely grieved over his dyspraxia. That anxiety is having a horrible impact on him. It's causing me great distress. We've seen him deteriorate from a happy-go-lucky, exuberant little boy to a withdrawn, serious and grieving little boy.

Well, I'm off to see if I can get ARC or the IL coordinator on the phone.

thanks for your response. it is very helpful.

WG -
Be sure to tell Mite that when Aunt Trinity was a little girl she had ugly handwriting and terrible spelling and she felt so ashamed about it. Computers haddn't been invented yet, so all the adults spent a lot of time wringing their hands with worry. It made Aunt Trin very nervous. She though she was terrible at Language Arts - until she learned how to touch type, at age 12. Then all those thoughts in her head had a way to get out - and she's been very happy, and making other people happy ever since! Making stories is something that needs lots and lots of practice, but once Mite gets a little older, he will find ways to tell his stories, Aunt Trinity is completely certian.

Love and More Love,
Trinity

Willa:
Mite's response to the IM intervention tells me that there is something going on in the vestibular system. I often have to modify the IM program and use SI based techniques to "soften" the impact. But his response was most definitely the most significant response I've heard of to date. How old is he again (I'm sorry, so many kids on the boards, I know I've seen that somewhere before but can't remember).

If he is 9 or under, I would most definitely seek out an SI certified OT to administer the SIPT and identify or rule out a somatosensory basis for the dyspraxia. This could be present along with a higher level problem (ie: LD).

Have you heard of Therapuetic Listening? Sometimes this is where I start with kids, before moving to IM. Find info here:
www.vitallinks.net

Does he exhibit movement based anxiety? Like fearful in large rooms or of his feet leaving the ground? He may have an otolithic dysfunction (vestibular function) that is contributing to his dyspraxia as well.

Are there any pediatric clinics in your area with SI OTs?

WillaGayle -
Have you explored this website?
http://www.wrightslaw.com/
((wink))
Trin

Mite is 8.

He expresses a lot of distress re: heights and movement. Just last night we were tossing a balloon back and forth and he said, "Gosh! I'm getting vertigo!"

When we are getting out of the van, he either grabs onto me or clings to the door post to get down. Going down large long staircases and hallways distress him, too. Forget escalators! Last year in India in an airport, he somehow got lost in the shuffle and stuck at the top of an escalator while the rest of the family made our way down. We were in a high security area and were not allowed to go back up. He screamed in terror. I felt so bad not being able to get back up to him. Finally someone grabbed and held him while he screamed and handed him to his dad. Ok...off I still get emotional thinking about his terror.

During the OT days, when he was 6, she would put him into a hammock-like swing. You could see his little knuckles poking through the cloth. He was clinging for dear life. He hated it. The whole process is very awkward. I'll call his old OT and see if she did a SIPT.

I have a friend telling me about a Therapeutic Listening and she says she has it to loan me. When she gives it to me, I'll post the details. I don't plan on using it unless I've had it okay'd through his old OT and his doc.

Which kinds of LD?

I'll look into the pediatric SI OT info.

I know I have a vestibular and proprioceptive based balance disorder and have been told I have dyspraxia, too. So, maybe this is all connected? Maybe Mite has it, too. I cannot stand being in large places. I tilt strangely and stumble about a lot in the best of situations. I don't drink alcohol, but have been acused of being tipsy many times.

ok....deep breath again....

Trin-
I'll share that story with Mite. Yup! Wrightslaw and I are well acquainted. Anything specific you want me to note?

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?

I finally got a hold of the OT we saw back when Mite was in kindergarten. She did NOT do SIPT. She gave me the name of 2 therapy places that do. I got a hold of them and have the wheels in motion to get in him in the next couple of weeks!! phew!

Then she told me she used "The Listening Program", not the Interactive Metronome. It was the Listening Program that made Mite so ill. She said it was the most violet reaction she had seen, apparently he also "shook" for several minutes prior to the vomitting and sudden migraine. I remember him being very agitated and emotional for several days afterwards. I was quite ill myself during that time and in and out of the hospital; so, I wasn't as in tune to him as I am now.

So.....now I need to look up more about Interactive Metronome and find out who uses it.

onward!!:^)

Yea!!!! I'm so glad to hear you are finding some direction! This is great news!

I have taken the class in "The Listening Program." It is different from Therapeutic Listening. The Listening Program is from a company called Advanced Brain Technologies (ABT) in Ogden Utah. It is a very structured program with not much opportunity for using clinical reasoning in choosing music. You just take the person through the 8 CDs (or maybe 6?) in a very straight-forward fashion. I had a child with autism do it and he did get pretty agitated at certain times. He did much better and responded favorably to Therapeutic Listening.

Therapeutic Listening is quite different, although based on the same theories of AIT (Guy Berard). With TL the therapist chooses specific modulated music based on the clinical presentation of the person. There is music that impacts different areas of function and the therapist has the freedom to choose music in any order as appropriate for the person.

I no longer use The Listening Program. I often use Therapeutic Listening BEFORE the Interactive Metronome program when a child shows a lot of auditory hypersensitivity. This is noted in the IM pre-test. As I said, TL is gentler and you can start with very "easy" music that is linear, little to no harmony, simplistic rhythmic patterns, etc. and then move on slowly to more complex music. But sometimes a child is just ready to start with the IM program. If you can find an OT who does both TL and IM that would be great!

I will be anxious to hear how the testing goes and what the therapist thinks about the dyspraxia. I'm keeping my fingers crossed that you will get some meaningful information that will help direct the school. I'm sure it will be helpful to you, too, in better understanding how Mite processes information.
Keep me posted!!

what's the "Brunix"? All these OTs say that should suffice.

The Bruininks-Oseretsky Test of Motor Proficiency (BOTMP).

This is a standardized test of motor skills. It assesses gross and fine motor performance. It will give you a percentile ranking for Gross Motor, Fine Motor and Full Composite scores. It is a test of motor performance, NOT of sensory integrative function. This test will do just fine if you want to know how his motor skills compare to other children. It does not assess dyspraxia. It does not identify underlying problems in sensory integrative function (ie: vestibular, proprioceptive and tactile function). It assesses performance. Period. It is certainly a useful test for some purposes. But I don't see that it is one that would serve you well. It will tell you if he has coordination problems, but it will not tell you why. Nor will it tell you where his strengths lie in sensory processing. So you won't get any information to help with treatment planning, intervention, strategies, etc. You'll just have a score that says he is/isn't as coordinated as other children.

Actually, some kids with dyspraxia have overlearned some of the tasks on the BOTMP and they actually look okay on that test, in spite of not being able to get on a swing they've never seen before. Or being scared to death of having their feet leave the ground.

Ok. I found, in my notes, the neuropsych. ot did that and that his scores varied quite a bit.

How much does the SIPT usually cost? Every OT I've talked to said most insurances will not cover it and they don't like to do it because it takes four hours and etc. I did find the one in WI who will do it. I'm waiting for the paper work but in the meantime I'm worried about the cost.

I sent you a message about cost, etc.