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    Joined: May 2013
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    My 6-year-olds school either seems to be utterly confused/clueless or just apathetic about getting the services he needs added to his IEP. Around his 4th birthday, he got an IEP but only for speech. Back then, when they evaluated him, the OT predicted that he would have big troubles with handwriting in school (because of the effort required to write neatly) but he would never qualify for OT because he doesn't have an educational disability. I thought this was ridiculous at the time but didn't really fight it. Fast forward a couple years and now he is in first grade. Last year in K, I took him to a neuropsych hoping to actually get a written diagnosis of DCD so that the school would stop fighting me about OT (and possibly PT) and actually do something. The neuropsych gave him a Grooved Pegboard Test and the result was abysmal. I believe well under the 1st percentile. Then he gave him the visual motor integration test (Beery?) and his score was about the 65th percentile. I asked how he could have such hugely discrepant scores on two different fine motor tests. The neuropsych got out his WISC IV scores and explained that his nonverbal IQ score is very high and therefore he will appear average on any motor test that has a mental component. His perceptual reasoning score was 99.7th percentile but he said that's an underestimate because it included block design which involves fine motor. DS uses his strong visual-spatial ability to compensate for his poor motor skills--so any physical test that has a mental component he will score average on. Any test that is purely physical, he will get poor results (like the pegboard). That made sense to me and explains DS's hugely discrepant scores on motor skills tests throughout history, depending on what test he is given. It is true, anything that involves mental or visual spatial ability, like copying shapes, he does fine on. But transferring coins from one hand to a tray or screwing pegs into a board quickly--forget it.

    While I'm happy DS is using his high mental ability to compensate for his low physical ability, the school is using this against him. His handwriting is appropriate for his age (albeit on the messy end of things). DS seems to be able to write very well for about 5 min. and then he gets tired, it's too much work, and he gives up. Five min. is about the time it takes to do an observation or assessment. I'm wondering if anyone has dealt with this type of thing, or an ignorant school system that doesn't seem to know how to qualify kids for services. What disability category should we try to qualify him under? Physically Impaired? Other Health Impairments? DS was in an accident and had a traumatic brain injury last winter and his vision was severely affected. While he has 20/20 vision, his eyes do not track moving objects, really at all. For a while one eye was "stuck" and had no tracking ability at all (sixth nerve palsy) but this seems to have resolved. But tracking moving objects is still impaired. I believe his vision tracking was at least somewhat impaired before, due to the DCD. I'm not sure how much worse it is now. I am wondering how much this visual issue is affecting his ability to read (seeing all the print), and his motor skills. While they were poor before, they are worse now (and we have documentation of that--he was in private OT and PT last summer and they exited him because he was doing so well. Now he is back in).
    Also, I'm not sure what to ask for in terms of the giftedness. The neuropsych wrote in the report that it should be addressed by the school. What would they do with a kid who can understand long division, but has motor skills like a preschooler. A kid who can read 4th grade level chapter books, but can't write a report about the book or draw a picture? I think grade or subject acceleration would be completely inappropriate, but that's all the district offers for K-2nd.
    Also, if anyone has any ideas about his speech, that would help too. It is slow and dysfluent and he has an odd prosody and pitch. He sounds kind of like Mickey Mouse and has ever since he was a toddler, but the high pitch is gradually improving. The speech therapist doesn't seem to know how to deal with this. She knows how to deal with articulation and language issues, but not speech output issues like dysfluency, prosody and pitch. He was under the first percentile for articulation at age 3, but now it is average. So she wants to drop speech from his IEP and thinks pulling him out is a waste of time. The neuropsych recommended that he keep getting speech because he will be bullied if he keeps talking the way he does.

    Anyone have input about any of these issues? Sorry this is so long.

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    Is he hyper mobile? Does he have low tone? There seem to be a disproportionate number of kids on this board with connective tissue disorders, all of whom have 2e type issues (as far as I recall), a diagnosis of which is purely physical and might get him accommodations on those physical grounds? It might be worth lookin up hypermobility syndrome and Ehlers Danlos Syndrome (and maybe marfans) just to see if any of it fits. Might be wayyyyyy off base there.

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    He could qualify TBI...traumatic brain injury. And then in the paperwork somewhere you need to note that unless school assignments or writing tasks will only take 5 minutes out of his whole day for the rest of his life any observation or assessment needs to realistically mimic the actual workload task found in school, such as an essay expected to be completed in 45 minutes of straight writing.


    ...reading is pleasure, not just something teachers make you do in school.~B. Cleary
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    Thanks Sweetie and MumofThree. I wondered about hypermobile joints, and he does have them, but I don't think they are that severe. I have them as well, for instance my fingers and elbows. I'm getting PT for a broken elbow and the PT keeps referring to my elbows as "weird" since they naturally bend in strange directions. DS also has hyptonia but it's not severe. Stranely, he met motor milestones like sitting, crawling, and walking as an infant on time.

    DS has a chromosomal disorder (balanced translocation) that runs in our family (I have it as well)--the docs act like it's completely obvious that some of these issues like hyp0tonia and the DCD are from that (he has a possible Chiari 1 brain malformation as well), but the school criteria doesn't even address that. They would say that's a medical diagnosis, not an educational diagnosis.

    So hard to say in what way exactly, the TBI impacted him and how much it is just the DCD/hypotonia and the fact that he didn't get therapies for a year, therefore regressed. Plus it didn't help that he was kept out of recess/phy ed for months.

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    If he has chiari malformation, low tone and hypermobility you need a formal EDS assessment. And EDS absolutely warrants accommodations.

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    Is chiari associated with EDS?

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    Never mind I looked it up. I just don't think that his hypermobility is that severe. however, I have wondered about tissue problems since he was an infant. When he was born his ears were folded in half and they stayed that way for a few days. They are/were unusually soft and can be rolled up like a tortilla. He has deep dimples in his shoulders (but his father has some "depressions" in the same spot that I don't see on other people). His teeth were notched, like someone took a saw and irregularly sawed off the ends of some of them.

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    The photos of hypermobility available on the web are pretty severe. I second (or third) the recommendation to look into a connective issue disorder. I have EDS and my son has an appointment in two weeks with a geneticist to see if be has it. He also had tortilla ears when he was a baby! Now they look normal but remain very foldable like mine. It can actually hurt a bit if we sleep on an ear wrong. Strange huh?

    So yes unusual joints in parent and child, DCD, and possible Chiari,
    are all linked to EDS (and maybe other connective tissue disorders).

    I would go to ednf.org and look for a recommendation on a good specialist to go in your area. There is a message board similar to this one.


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    Thank you. I need a referral for everything but will talk to his pediatrician. He did see a pediatric geneticist several times between the age of 2 months and 2 years and she could never find anything besides the translocation, which we had him tested for right after he was born and was always told (by geneticists/genetic counselors) it wouldn't be a problem since it's familial. The geneticist thought the dimples in his shoulders are basically a birth defect--a problem with tissue development plus how he was positioned in the womb. Who knows. She never gave me an explanation about his baby teeth but they became more normal as he grew and most of the notches filled in. Luckily the two permanent teeth he has look normal.
    I know I was pretty severely deficient in Vit. D while pregnant so I sometimes wonder what role that played in some of this.

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    blackcat, I have some questions - they may be in somewhat random order, but here goes:

    Does your ds have a diagnosis of DCD from the neuropsych?

    I think there are two separate things you are attempting to advocate for - services for ... and accommodations for handwriting. I would try to look at these separately in terms of how you advocate, even though the physical/neurological cause of the challenges is most likely related.

    I would also recommend that you separate out what you need/can request from school and what your ds needs for life. There is going to most likely be a limit to what you can get at any point in time from school, but you also want to be sure you're getting your ds the remediation he needs now and that you understand the accommodations he will need now and in the future so you can have a path set up to get him where he needs to be on time, rather than lagging behind because you are fighting the school and hoping for them to carry the full load of getting him there. It helped us to have a plan laid out that let us look forward knowing where our ds would need to be in high school and as an adult re accommodations when he was still in early elementary, because we were able to move in that direction from the beginning rather than playing catch up. There are a lot of things for handwriting accommodations you can do at home such as practicing typing whether or not your school is on board yet.

    Re accommodations - you should be able to receive these with the diagnosis of DCD. Even though your ds' IEP may be for a different diagnosis/challenge, you would roll the DCD accommodations for handwriting into the same IEP (or at least that's what you would do in our school district). If he doesn't have an IEP, you would apply for accommodations under a 504 plan.

    "What would they do with a kid who can understand long division, but has motor skills like a preschooler."

    You would use a computer or iPad or some type of keyboard to type out the long division problem. There are a number of different options for doing this. If the school doesn't have a keyboard or computer or whatever that allows your ds to do this to show his knowledge, you can request that you send one in with your ds if you have one you're willing to send it. There are many different ways parents can get around this access to AT issue - so much depends on what you are able to do, what your school is willing to do etc - the solution is very individual but the *concept* is the same for all kids who struggle with handwriting (above and beyond typical grade level struggles) - remediate handwriting as suggested by professionals who have evaluated your child, but when it comes to subjects *other than handwriting* - take handwriting out of the picture. Use a keyboard so that the student can participate in the academics at the level he/she is capable of understanding, not limited by their fine motor skills.

    "A kid who can read 4th grade level chapter books, but can't write a report about the book or draw a picture?"

    I'll just add one note here - be sure the "can't write" is only due to fine motor - if it's due to other challenges with written expression you might want to request help or at least be sure the level of instruction your child is receiving at school is at the level he needs. It's not unusual for children with no challenges to be able to read higher level books than they can write a book report for.

    I also think it's important when advocating to be aware of what level other children are working at - I'm guessing that it's possible your ds isn't the only 6 year old reading at a 4th grade level in his class or in his school. That's just my guess based on what I saw in my kid's classrooms in early elementary. The students who were the true outliers in reading ability were way ahead of 2-3 grade levels ahead. That doesn't mean your ds won't be way ahead or an outlier - you might see some huge leaps still ahead for him in reading - it's just my gut feeling that there are most likely a few other kids like him in his classroom now re reading ability, because reading abilities and levels have been all over the place in early elementary classrooms my kids have been in. I have also seen with one of my children that she enjoyed "reading" much higher level books than she was really fully comprehending - so before I assumed that difficulty with writing a book report was due to writing issues, I'd want to be sure the reading levels my dd was testing at at school lined up with what I saw her reading at home - if she was reading chapter books at home but not testing at that level at school... I'd want to dig a little deeper - is the testing off, or is the level measured by the school really where she's at re comprehension. I only mention that because I have one child (HG+) who always *always* picks higher level books to read at home than the level she's really at for writing book reports and fully comprehending content.

    "Also, if anyone has any ideas about his speech, that would help too. It is slow and dysfluent and he has an odd prosody and pitch."

    If your ds has DCD (also known as dyspraxia) - it's not uncommon to have speech challenges related to it. Try googling "apraxia of speech" or dyspraxia + speech. It sounds like what's going on with your school district SLP might be that the school district has a narrow range of types of speech challenges that they remediate, and your ds' challenge is something this particular SLP hasn't seen before or she is being pressured in some way to move kids through and out of services quickly. It's a really tough situation to be in, but we've found that going through private speech therapy (as well as OT) was so much more beneficial for our ds in the long run - we were able to find an SLP who understood our ds' specific challenges (which weren't typical for a school SLP) and we were also able to get him help he truly needed even though he didn't technically fall low enough in ability to qualify through school. This is a place where that "life plan" vs school needs falls in - you may need to seek out services for what your child needs outside of school.

    Re getting services for speech or OT services at school - our experience in our school district was that the guidelines for qualifying were very well defined, and a child had to meet the criteria or there was no hope of getting services. We found that calling our local parent advocate office was extremely helpful in learning the ins and outs of school district and state policy re services - and that helped us in turn know whether or not something our ds needed was worth time and effort fighting for through the schools. I suspect that's what your ds' OT meant when she said he wouldn't qualify for OT through the schools - the OTs and SLPs we've worked with privately were all very knowledgable re school district policy for services because they'd either worked with the district at some point in time or because they were serving a large number of clients who didn't meet the school district criteria but still clearly needed help.

    "The neuropsych recommended that he keep getting speech." I would ask your neuropsych if he/she thinks your ds will qualify for speech services through the school district, and if so, does he/she think the school district services are adequate.

    Re the IEP - your ds should be able to qualify for an IEP under OHI (otherwise health impaired) due to his TBI.

    Good luck advocating - it can be overwhelming at the grade level and age your ds is right now -

    polarbear

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