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    Joined: Sep 2011
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    N., what do you mean by "we were told we have enough to diagnose dyspraxia" but "have not formerly had the diagnosis"? Has a professional told you there's "enough" for a diagnosis, or other parents?

    Sensory issues can definitely be a part of dyspraxia, as well as processing. I'd also put a small caveat out there to watch for - my dyspraxic ds also made great strides in handwriting when working with an OT in 3rd grade, but it didn't take away the dysgraphia he has (which I believe is associated with his DCD). Once he'd had OT and had legible handwriting his teachers thought dysgraphia was no longer an issue simply because they could now read his handwriting - yet there was still a HUGE difference in his ability to express himself fully through written expresssion, spell, use correct grammar etc if he used AT as opposed to handwriting.

    With coordination, a lot of what has helped our dyspraxic ds is simply repeat repeat repeat. And then repeat again. He gets things - eventually. Sometimes he forgets things he's finally learned too - it took him until 4th grade to learn how to tie his shoes (and he'd worked at it steadfastly for years and was soooo happy when he figured it out!). Then we went on spring break and he only wore his pull-on snow boots for a full week, and by the end of that week he'd forgotten how to tie shoes and had to learn all over again.

    Irena, thanks so much for posting the link - I'll be very interested in following the study and seeing what comes from it!

    polarbear

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    People with DCD have problems with working memory or following steps. Wikipedia also has a good page on DCD. DS's teacher gave him two lockers so that he can organize his stuff, and put signs on his locker with steps so that he can remember what he is supposed to do. He is "slow" with physical tasks, like even unzipping a backpack, he doesn't necessarily remember how to do this "automatically" like other people might...he probably has to recall each step and if he loses focus, the process might derail and he may forget that he was even attempting to unzip his backpack. Someone did an observation of him as part of his IEP eval and the report sounded like a train wreck, almost comical. He went into the classroom with his winter coat still on so he had to go back in the hallway and take it off. As he was shuffling around in his backpack, several things fell on the floor. He went back into the classroom and the teacher (or someone) told him to turn in his math homework. DS said aloud "Where's my stuff?!" He had forgotten his folder in his backpack. Back out in the hallway, shuffling thru the backpack. More things fall on the floor. He stopped to chat with some people. By the time he got back into the class, everyone else was sitting down working on math and halfway done with it. It sounds like ADHD but unlike my DD with ADHD, DS is FAST with work, unless it involves a lot of handwriting, and his focus is superb. The other day he brought home about 8 math worksheets--he had done them all during math. He listens well when people speak. He's not hyperactive in any way. So ADHD would be inappropriate--it's more along the lines of executive functioning issues and impaired organizational ability.

    DS's private PT and OT both want to exit him because overall he is scoring average on assessments after 6+ months of therapy. He will probably regress in his skills--it happens every time.

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    His OT and PT reviewed his results with neuropsych who said there was enough there to diagnose. We then talked to developmental pediatrician who said same thing as well as enough to diagnose dysgraphia. Bit both were mild and I wouldn't gain anything as code for insurance is same as what they coded him already for the PT and OT...so I decided not to ha e the label officially slapped on him. I hope that makes sense.

    Blackcat..I can relate to your example...my son is a bit more mild in his DCD but there are enough similarities for me to smile smile.

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    Originally Posted by N..
    His OT and PT reviewed his results with neuropsych who said there was enough there to diagnose. We then talked to developmental pediatrician who said same thing as well as enough to diagnose dysgraphia. Bit both were mild and I wouldn't gain anything as code for insurance is same as what they coded him already for the PT and OT...so I decided not to ha e the label officially slapped on him. I hope that makes sense.

    Blackcat..I can relate to your example...my son is a bit more mild in his DCD but there are enough similarities for me to smile smile.

    Wow I am jealous. I want this label so I can show the school and others who do not understand my son and educate them! And it just hasn't been as easy as this for us frown

    Last edited by Irena; 04/26/14 08:17 AM.
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    Originally Posted by blackcat
    Irena, are they looking for more kids for their study or is it just kids in a certain geographic area?
    DS has already had 2 MRIs and all that shows up is a possible Chiari I malformation.

    I'm not sure. I can ask. She is at Princeton University. I think she wants to see what dyspraxic children's brains look like, what are the differences compared with neurotypical children and what do those with dyspraxia have in common.

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    Originally Posted by KJP
    Thanks for sharing this. My son also has a DCD/dyspraxia diagnosis. Did she have any ideas on how a connective tissue disorder would complicate the picture?

    No, we didn't really talk on that only to mention it seems co-morbid with it when I told her my son, which is what my son's connective tissue doctor also said and put her report when she diagnosed my son.

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    Originally Posted by Irena
    Originally Posted by blackcat
    Irena, are they looking for more kids for their study or is it just kids in a certain geographic area?
    DS has already had 2 MRIs and all that shows up is a possible Chiari I malformation.

    I'm not sure. I can ask. She is at Princeton University. I think she wants to see what dyspraxic children's brains look like, what are the differences compared with neurotypical children and what do those with dyspraxia have in common.


    Interesting. Let me know if they are interested in his MRIs...it probably wouldn't be hard to have the images sent.
    He doesn't fit all of the typical dyspraxia symptoms though. For instance many kids with dyspraxia struggle with math, reading, visual spatial ability, etc. and those are strengths for DS. He does have problems with motor sequencing, bilateral coordination, and has low muscle tone. He also has a genetic disorder (I already sent his blood to Harvard for a study regarding that which went no where). His OT commented the other day about how it amazes her that he can understand more complex math than she does, but can't follow directions for tying his shoes.

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    Originally Posted by N..
    His OT and PT reviewed his results with neuropsych who said there was enough there to diagnose. We then talked to developmental pediatrician who said same thing as well as enough to diagnose dysgraphia. Bit both were mild and I wouldn't gain anything as code for insurance is same as what they coded him already for the PT and OT...so I decided not to ha e the label officially slapped on him.

    N., I understand the reluctance to add a "label", but fwiw there are a few reasons I'd reconsider it. My list is a little long - it's probably things you've thought through already, but I decided to post the full list anyway in case someone else reads this who is thinking through the same thought process and has the same concerns re "labels".

    First, I think it's really important to understand what dysgraphia is. OT and PT can absolutely help dyspraxic children - going through OT helped my ds develop legible handwriting, correct pencil grip, good posture while writing, eliminated wrist pain while writing, and he became able to write with a reasonably constant and light pressure on the paper so he no longer crumpled up papers while he wrote. That was all good! But what's important to understand is what OT/PT *can't* remediate. At the heart of dysgraphia is a challenge with automaticity of either brain-motor or brain-visual control. Dysgraphic children do not develop automaticity of handwriting, no matter how legible and neat their printing/cursive etc looks. Every time they form a letter on paper with handwriting, their brain is spending much more time and effort on that action than a neurotypical child's brain does. Even children with sky-high percentiles on working memory still only have a limited amount of working memory - that's the memory that is used while writing etc. For dysgraphic children, most (if not all) of that wm is taken up by forming the letters since they aren't automatic - hence there is very little left over for spelling, grammar, punctuation, etc - much less anything left over for actual composition and organization of thoughts. Hence most writing for dysgraphics is not anywhere near as complete, complex or detailed as it is when typed or given verbally. Dysgraphics rarely can rely on handwriting to show their full knowledge.

    Next reason - school. Your ds is still very young, but as he goes upward in grade level, the need to be able to express his thoughts in writing is going to go up considerably - and continue to go up, based on expectations of neurotypical children. His handwriting and written content is going to be compared to neurotypical children. That gets harder and harder for dysgraphics to cope with without AT as the years go by and expectations increase.

    Limitations of OT - I mentioned above that OT helped our ds tremendously. The catch is - it didn't stick. Some of it did - he still has the same legibility of handwriting he did when he left OT and good posture/correct grip etc are still present, but his wrist pain has returned and he can't write for more than just a few minutes without pain. DS also learned how to write in cursive in 4th/5th grade - and had really *nice* looking cursive - according to his teacher his classmates were jealous it was that neat - but one year later he'd forgotten how to make any cursive letters except for the letters in his name. At this point in time, several years later, he's also given up signing his name in cursive. I am really glad he went through OT, and honestly, if he wanted to, I'd send him again since for another round of OT in hopes of helping with wrist pain, but at this point he's happiest using AT (and by far more productive).

    Testing accommodations in school - it's possible you might get standardized testing accommodations that apply without a dysgraphia diagnosis. I've found that accommodations like extended time are given out as common accommodations in our school district if a teacher sees a need even if there is not a diagnosis. That's not the case in each individual classroom, however. Having a 504 plan or IEP with a specific and correct diagnosis is really really helpful here in school - and it's absolutely necessary when applying for college board testing if you want *any* accommodations - and from what I've heard and read re college board - you need to be able to show a history of the diagnosis and accommodations - you can't just decide to get the official diagnosis in high school for the specific reason of applying for college board accommodations.

    One of the accommodations that is crucial for most dysgraphic students is use of a word processor for essay questions, and that's the accommodation that is very difficult to get (either in school or college board) without the correct diagnosis and documentation of the diagnosis.

    Last reason to give a child a "label" - my children (I have two 2e kids) - valued having the label. It was like taking the weight of the world off their shoulders to be able to explain to them that they were dysgraphic and dyslexic and that it had a name. My ds is not the most outgoing/sharing person in the world when it comes to personal information, but he is old enough now that he has to advocate for himself at school, and in doing so he explains to teachers/etc up front that he is dysgraphic and will explain to them what that means and how it impacts him at school. It would be much more difficult for him to attempt to advocate for his needs without being able to say he has dysgraphia.

    Last thought - I've rarely found any negative push-back from my kids having their "labels". What I have seen is a *lot* of negativity happens when my kids are in situations where adults or other students aren't aware of their dysgraphia or reading challenges - and judgments are made based on the quality of their handwriting or reading. You can choose to think of a label as a big red scarlet A burnished on a child's head that sets them apart and ridicules them, or you can choose to see a label as the type of label you put on boxes stored in the garage with gear that you can't see from the outside. I chose the second way to look at it, and we treat it that way. To be honest, our experience has been that LDs and ADHD/etc are fairly common in school now, and having a label of clarity is not the Scarlet A type of situation at all, but rather it's just not really seen as much of anything at all, except for when it's needed to understand what's "stored inside the box". My kids have faced ridicule in school - but that was before they were able to explain for themselves that "I am dysgraphic and that is why ____" or "I am dyslexic and that is why _____". Same for me as their advocate/parent.

    Just my 2 cents!

    Best wishes,

    polarbear

    Last edited by polarbear; 04/26/14 11:21 AM.
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    Polar, beautifully put. ITA about labels for all those reasons.

    (Have you considered publishing a manual about dysgraphia?...)

    DeeDee

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    Polarbear nailed it as always, but I wanted to add a few things. First off, in our experience it is important to note that working memory related to DCD is not necessarily the same as working memory on the WISC. My DS's working memory score is his highest and because his VCI, WMI and pri are all in the 140s, it is even more difficult for him because his processing speed score is in the 90s and dropping rapidly. His coding raw score hasn't changed in four years, and he essentially writes the same speed and neatness at 11 that he did at 6.

    Also, Polarbear is totally correct- we did OT as well. And while he did learn to cut a steak without flinging it onto the table, and he can now button a shirt, it is slow as molasses and like a new experience every time. If ANY variable changes- different plate, different knife etc- the whole thing hs to start from the beginning.

    PT did help with balance and gait, and that seemed to stick longer because his core muscles got stronger. But anytime he is lazy or if he gets sick and misses several days of exercise it starts to fade again.

    Our neuropsych helped explain that his handwriting will probably never get better and he needed to learn to type. She said that each letter has to be drawn, that it isn't automatic and likely never will be. She likened it to learning Chinese characters and having to really think about each line, each time.

    I am mobile without bookmarks, but our very best information came from Canchild in Canada. They have a huge document for changes a school can make, ways to help at home and what to expect at different ages.

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