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    Joined: Aug 2013
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    JenT Offline OP
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    Hello, I haven't posted in awhile, but I read the forums and always learn from you all.

    My son is 9 and diagnosed with dysgraphia (DSM-5 code 315.2). His writing has always been a big issue and has not improved since he first started trying in preschool. He has had a lot of struggles in school and was receiving counseling for years. Last year, the counselor told us that the cause of his anxiety and depression is the dysgraphia. We were advised to stop counseling and focus on the dysgraphia.

    I had him going to a private OT for awhile, but the office location was far and it was very difficult for me to spend an entire evening commuting and doing OT. Also he hated it, big surprise... so we took a break from the private OT.

    I have been trying to get him OT through the school, they do not want to do it. He'd have to have an IEP, which is fine with me. They had him "informally evaluated" by OT after I gave them the letter diagnosing dysgraphia. He did not qualify for services. I'm now trying to move up the ladder.

    Any advice? The poor kid can barely write and I know what's coming up for him is much more writing. He can't type either. The teacher is excellent and is giving him informal accomodations, but what are we going to do next year and when he's in middle school? I'm so frustrated for my son.

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    aeh Offline
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    It sounds like he was not formally evaluated, and therefore did not receive a comprehensive evaluation. I would put in a written request to do so. The eval you request should include not only a complete formal OT eval, but also cognitive and achievement evaluation, in particular because qualifying for an IEP requires documentation of impacts on educational progress. There is no way they could have made a meaningful eligibility determination (yes or no) based on an informal OT screener.

    If I were you, I would want to know how his dysgraphia is affecting his written expression, both its quality and fluency, which should involve assessing his oral expression as well, so that one can compare his language expression/output when dysgraphia is not a factor (oral language) to his written expression/output when it is a factor. In assessing the educational impact of dysgraphia, key places to look are

    1. writing mechanics: spelling, punctuation, capitalization, handwriting, legibility.
    2. writing fluency: speed, length of written products, effort involved in generating age/ability-appropriate products.
    3. composition: sentence structure, language, usage, extended writing, forms of writing, organization.

    Useful data points that help with developing interventions and accommodations include comparing how he does with writing when provided/not provided with various levels of scaffolding or accommodations (graphic organizers, pre-writing activities, priming the pump, dictation software, typed responses, word prediction software, spell/grammar check, thesaurus functions, supplementary oral responses, etc.)


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    JenT Offline OP
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    Thank you so much aeh. I'm going to do exactly that. I'll update later.

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    From what I have seen on this board and in my research, OT can sometimes help, in those cases where there is a physical component to the dysgraphia that is amenable to therapy. For most kids, though, the focus tends to be on simply circumventing the dysgraphia, through the kinds of accommodations aeh lists above. When investing your energy and resources to deal with dysgraphia, it seems to be particularly important to figure out what, if anything, might be fixable, and how much you should just aim to bypass.

    For us, we focused earlier years on getting the teachers on board with alternate ways of showing knowledge, while at home we're building up ability with keyboarding, word prediction, voice recognition and all the tools that helping the kids grow increasingly independent in their output. At this point, DS in grade 6 is a good typist and just about there (but when he gets overwhelmed, his awesome English teacher, who gives out LOTS of homework, will occasionally sit down with him and do a more challenging task orally). For DD in grade 4 (dysgraphic/ dyslexic), I still scribe and scaffold lots, but she's increasingly practicing with the voice recognition, and it's slowly getting better.

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    I totally agree with the comments above. DD has now had 6 years of OT and really, truly, could not write a legible 2 sentence note by hand if her life depended on it. She can now hold a pencil and form letters but the written result is not anything I can read. Sad but true.

    To follow up on aeh's post - when she was little DD would dictate *amazing* stories - full of detail, colorful phrases, interesting story lines, complex sentences with advanced vocabulary, etc. Truly amazing. By contrast when she had to handwrite homework she would take an hour to write the required 5 sentences - counting out the five shortest words to use in 5 word sentences to meet the minimum requirement. Not any hint of what she was really able to do when the dysgraphia (and dyslexia) were removed from the equation. Scribing was the first accommodation introduced, then modified test papers so she would not have to rewrite sentences or even words from a word bank, then alternate testing for spelling. We finally removed spelling completely - she will not master it no matter how hard she tries. My goals for her are to be able encode well enough for word prediction to guess what she is trying to write and decode well enough to select the correct option from the list.

    Fortunately we live in an age of Assistive technology and that is what is saving her. I realized early on she was making almost no progress with handwriting and started to request that she be introduced to keyboarding in 1st grade. School OT refused - she was adamant that keyboarding was not age appropriate before 5th grade. No amount of arguing, pleading or common sense could get her to budge. Ironically once the state switched over to computerized standardized testing kindergarteners started to be introduced to keyboarding so the district's scores wouldn't go down...

    Platypus is right that most of us with dysgraphic kids really seem to focus more on the work arounds. For my DD it's an iPad - primarily with the app CoWriter. It allows her to switch between voice to text and keyboarding so if it can't recognize a word she is saying she can type it in. She can then have the machine utilize text to voice, speaking the word prediction options so she can select the correct one. The voice to text feature built in to the iPad seems to work best for her (better than Dragon or anything else AT specialist tried with her.) We were told to make sure she has an iPad 2 or above.

    I had read here that some kids had better luck with cursive - less starting and stopping, picking the pencil up from the page, smoother writing, etc. The same OT who blocked introducing AT (really a lovely person who I like very much personally just did a lousy job understanding my DD's OT needs...) refused to introduce cursive. At the end of 3rd grade a different OT suggested as an option. It has been s-l-o-w going - a year and a half for DD to learn all the letters. I think at the IEP meeting at the end of this year (5th) the OT will declare that we have hit the wall on handwriting - she's come as far as she will be able to. Last year when I asked if it was worth continuing to work on handwritten DD said that she wanted to continue because she might find herself in a situation where she didn't have access to technology and would need to be able to write a note. Made sense so we continued.

    In our case working on keyboarding at home didn't help. DD is so 2E she needed direct instruction from the OT to even develop a strategy to find the keys on the keyboard. Some parents have had great success getting their kids typing at home. Depends on the kid and their level of disability. My DD receives 3 1/2 hours a week of OT in school to address all of this. She's making progress but it's really the work arounds that are helping.

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    DS (almost 9) has what appears to be obvious dysgraphia but does not have a diagnosis. Most of his writing is very difficult to read, and looks like preschool or kindergarten writing. We were able to get him a IEP in first grade by using the diagnosis "developmental coordination disorder" and qualifying him as physically impaired. We had an outside neuropsych diagnose him with DCD. He probably could have diagnosed him with dysgraphia, but didn't give him an achievement test. He diagnosed him with DCD based on a fine motor skills test and other outside evals that we had (for instance OT and PT).

    Without the DCD diagnosis, I am not sure that he would have qualified for services, and here is why. The school gave him the Woodcock Johnson Achievement test and his written expression composite was something like the 80th percentile. The school is looking for below average scores (probaby below the 25th percentile) on achievement tests. But tests like the WJ are so intertwined with cognitive ability that a gifted student would most likely not score in the below average range. If they do really well on one or two subtests, that will boost up their overall composite score. DS does awesome with spelling, his ability to write sentences in first grade was probably advanced for his age because he was reading way above-level, etc. So we really needed to go the poor motor skills route in order to secure services.

    We also had issues with my DD and getting her services for writing. She scored in the average range for written expression on the WJ-Ach and even the WIAT (although it was scored incorrectly, the overall score was still average). Yet, she wasn't ever writing more than 2-4 sentences in class. Her motor skills and handwriting were good, but she had poor fluency and had no idea what to write. With her, we needed to go the Other Health Disability route and get her classified through her ADHD.

    Some schools are not so "backwards". They will see that the student has large gaps in abilities and qualify them for services based on discrepancies. But that was not our experience.

    FWIW, DS had made little progress with handwriting with the IEP in place. I think it's good he is getting more 1-1 attention so he doesn't space out in class, and the OT is teaching him to type. But it hasn't been a magic bullet

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    JenT Offline OP
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    Thanks so much, these are all helpful comments. Deep in my heart of hearts, I feel like the OT will not help. However, I would like to try it again.

    It is really a mess for him. It is now affecting his math because he doesn't want to show his work (more writing). He's reached the limit of the math he can do in his head and then he guesses.

    It's so discouraging. He does want to do well and it bothers him so much that others can write with such little effort. His reading level through STAR was just tested at grade 7.5 and he is in 4th grade. He is getting a C in reading because of the writing!

    aargh

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    We have the same problem with math. He tries to do long division in his head, divide fractions with mixed numbers and then simplify, etc. Sometimes he is amazingly accurate, other times not so much. It does affect his tests in that he looks like he may not understand some concepts when really they are just computational errors.

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    aeh Offline
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    Strictly speaking, dysgraphia is recognized in the schools, but is not given that label for eligibility purposes. Under IDEA, which is the federal special ed statute, it would be called specific learning disability in written expression (or writing skills, or writing fluency). The eligibility process is distinct from the DSM-5 or private psych diagnosis, which must establish a qualifying disability, impediments to effective educational progress, and the need for specialized instruction.


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    Hi Jen,

    If you've been reading the forums for quite awhile, you've probably read that I had a ds who's now in high school who has dysgraphia. He also has developmental coordination disorder (dyspraxia) and an expressive language disorder (difficulty getting his thoughts out of his head - both on paper and verbally).

    You've already received a lot of great advice (and very thorough advice). I have just a bit to add based on our experience - we did get an IEP for my ds in elementary school, but it took quite a bit of work, we didn't have a school where staff was eager to help. DS *did* have two teachers who saw that he was struggling and who wanted to help (in their own way), but in one case the teacher only saw the disability and not the ability, in the other case, the teacher wanted terribly to get ds help but once he was "in the process" for IEP eligibility determination it became clear she was given programmed messages from the school administration that she had to deliver, aimed at convincing us there was not a problem and ds didn't/wouldn't/shouldn't qualify for services.

    Originally Posted by JenT
    His writing has always been a big issue and has not improved since he first started trying in preschool. He has had a lot of struggles in school and was receiving counseling for years. Last year, the counselor told us that the cause of his anxiety and depression is the dysgraphia. We were advised to stop counseling and focus on the dysgraphia.

    Our ds also had a great deal of anxiety and depression in early elementary school, which was due to living with his disabilities and being in a classroom daily seeing what all the other students were able to do so much easier than it was for him. We (parents) didn't see this at all - the way we found out he had dysgraphia was through a neuropsych exam to which we were referred by his ped when we took ds in to see the ped because he was so anxious he started having panic attack. Finding out ds couldn't *write* surprised the heck out of me, even though once we knew it was an issue, it was clear as all get-out that the signs had been their forever.

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    I had him going to a private OT for awhile, but the office location was far and it was very difficult for me to spend an entire evening commuting and doing OT. Also he hated it, big surprise... so we took a break from the private OT.

    I think (and it's jmo), that the most important thing to do is to first frame your efforts around what is and what you want to accomplish. If you have a dysgraphia diagnosis for your ds (which I *think* you do), from a professional, did they give you an outline of therapies/accommodations/etc to follow? I'm guessing they did, and that OT was a part of it. Why did they suggest OT, and do you feel your ds has accomplished those goals at this point in time? Or not? And if not, do you feel it's worth pursuing until he does?

    For instance, when my ds was first diagnosed, our neuropsych recommended three things as first steps (she also recommended other things farther down the road, this is just the starting place). 1) Remediate using HWOT at home over summer break to teach ds how to form letters correctly. 2) Handwriting OT to help him develop a correct pencil grip and posture and develop functional handwriting (functional did *not* mean handwriting he could rely on to do any kind of extended writing) and 3) start teaching him how to type right away. Our neuropsych was very clear - ds would never have the automaticity required to be able to rely on handwriting.

    We tried the HWOT - it was hopeless, ds was a mess when we tried and it was completely ruining his day. I decided after just a few sessions to give up on it. I wasn't giving up on remediation or helping ds, just saw that this one particular path wasn't going to get ds anywhere other than more depressed than he already was. He started private OT a few months later (nothing moves quickly in our town re OT) and continued for about 9 months (he was released by the OT then, having accomplished her goals for him). OT was very useful for our ds - it didn't remediate his dysgraphia, but he did learn the correct pencil grip and good posture while writing, which helped eliminate pain which he'd had in his hand from his unusual pencil grip. It also helped him with spacing letters appropriately, with maintaining steady pencil pressure (so his papers didn't end up wadded and torn) and gave him *legible* handwriting. It didn't increase his very slow handwriting speed or help him gain any automaticity of handwriting, but what he did gain from OT has been very very helpful throughout the years.

    We also started him typing write away - we had him learn touch typing using BBCMat followed by another software pkg (I can't remember the name now). We had a lot of people advising us "just let him type" "have him send emails etc" "he'll gain speed as he writes".. but that didn't work well for ds because his written output was extremely limited. I also have heard that letting children hunt-and-peck and find their own method is very effective, but we found that our ds was able to learn touch-typing at 8 (and our other younger non-dysgraphic kids later did too). DS wasn't *fast* (and still isn't) - his fine motor issues aren't going to let him every become fast at typing - but it's still much faster, more legible than handwriting for him, and it opens up access to a wide variety of technology that is very useful for dysgraphics (word prediction, spell check, etc).

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    I have been trying to get him OT through the school, they do not want to do it. He'd have to have an IEP, which is fine with me.

    A few thoughts here - first, it's helpful to know what the guidelines your school district has for qualifying for IEP eligibility and for services such as OT once a child has an IEP. Chances are good there is a very specific set of guidelines. Per the law, IEP eligibility should be a team decision which you (parent) are a part of, but you may be in a situation where the school is sticking hard-and-fast to the specific district guidelines and will try to convince you that they have to follow them (this happened to us). As severely dysgraphic as my ds is, he did not technically qualify under the guidelines in our school district. What helped us get around that was to be first, familiar with the test scores/etc that determined those guidelines and cut-offs, and then to also be very familiar with what specific evidence we had of our ds' dysgraphia in test scores. For instance, on his school district WJ-III Cognitive test he scored very very high - but he had one specific subtest which was extremely low due to his dysgraphia. When the school staff would argue that everything was "ok" such as grades, achievement test scores (which were usually averaged together) etc, we pointed out that one subtest and the huge discrepancy and explained how that was evidence of the severity of his dysgraphia. We also brought examples of his writing to team meetings. We would hear from teachers that his writing was "not the best, but also not the worse" in the classroom (this was a common theme for at least 3 years) - we countered with "we aren't here to talk about the other students, we're here to make a plan for our ds." We also asked for proof of claims like this - for instance, the school tried to tell us ds' handwriting speed wasn't an issue during one meeting - they pulled out a timed write paragraph ds had written, told us how many words he'd written in x number of minutes, and told us that was "about in the middle" of his class. So we asked how that compared to grade-level norms on national or wider scale measures. The school staff tried to tell us that those numbers didn't exist because there were so many different studies no one could know for sure what was correct. We politely asked for just an average example anyway. We weren't going to give up seeking that piece of data (and to be honest, I already had a really good idea where our ds would land because it was easy to google and get this info online and do a simple test at home) - so the OT finally took my ds' paper, counted up words per minute, left the room long enough to look it up online herself, and returned to let us know he was, in fact, working at a grade three levels below the grade he was in on this specific type of timed task.

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    They had him "informally evaluated" by OT after I gave them the letter diagnosing dysgraphia. He did not qualify for services. I'm now trying to move up the ladder.

    As you move forward, try to do two things. First, you can document everything that happens by sending an email after-the-fact stating what happened or what the conversation was etc, send it to the school staff that was involved, cc anyone from your ds' school team that might need to be in the loop, and let the person you're sending the summary to know that this is your understanding of what happened or what was said, and is there anything you are misunderstanding or anything extra to add.

    Second, make written requests for everything (email works a-ok for this).

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    Any advice? The poor kid can barely write and I know what's coming up for him is much more writing. He can't type either.

    Get him keyboarding right away. Remember - this is about his *life*, not just about school. You may be successful in advocating at school or you might not, but you will *always* need to be supporting your ds in learning how to live with his challenges. Keep the big picture in mind - he needs to become an independently functioning individual (and he will!). For most dysgraphic people, becoming independent means relying on AT for writing. And that's *A-OK* - if you look around you you'll most likely notice that a ton of what you'll be advocating for in terms of accommodations are things that most neurotypical high school kids and adults use *ALL THE TIME* smile One of my not-so-fondest memories of my ds' elementary school was the irony of me spending so much time arguing, um, I mean politely advocating, with a school staff who insisted my ds could not use voice-to-text technology and that they'd never ever heard of it... and then going into the school office where all of the admin staff had their headphones on using voice-to-text on their computers.

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    The teacher is excellent and is giving him informal accomodations, but what are we going to do next year and when he's in middle school?

    He needs accommodations. Not just for middle school, but for standardized testing and for his SATs/ACTs/ etc when it's time for them. Remember - he needs the accommodations so that he's able to show his knowledge. Be very brief in what you write when you make a request to the school, but be sure to include the reason - he needs to be able to communicate what he knows.

    Also, if it helps, be sure to remember that what you're requesting is entirely reasonable (unless you're requesting something that is way out of the ballpark not related to the needs he has). Follow the advice of the professionals who've evaluated him, research everything you can so you can be familiar with his challenges, pay close attention to his schoolwork and *save* examples, do some simple "testing" at home to develop examples if you need to (things to show the difference in speed/quantity of written vs keyboard vs verbal output when writing etc). Stay calm and polite at meetings but also stay firm - have a script in your own head re what you want to achieve, what you need to say to make your point, and don't deviate even if the school tries to move the meeting in a different direction or tries to dissuade you.

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    I'm so frustrated for my son.

    It's a very frustrating time - I found elementary school to be *the* very toughest time for my 2 2e kids, especially for my dysgraphic ds. Remember that your ds has one *very* positive thing going for him right now - YOU. You're advocating and sticking with it, thinking through it, doing your best to get him what he needs. Once he has accommodations in place, things will improve. Chances are once he gets to middle school and on into high school, things will continue to improve because more and more classes will (most likely) utilize technology.

    There's also one last thing I meant to mention way back at the top - it's helpful to think through - do you want an IEP or a 504 plan for your ds? IEPs are meant to be individualized education plans, and if all you think your ds is dealing with is dysgraphia, he might not need and IEP. OTOH, if you think he needs OT, you might need to get an IEP for him in order to get OT services through the school. If you have a local parent advocates group it would be worth a call to talk through your ds' situation relative to what typically happens in your local schools because things work differently in different districts. Advocates can also help give you the language that will be most effective when you are talking to, writing to, or making a request of your school staff.

    And one other note - sometimes you can expend an enormous amount of effort on fighting the system just to get that something such as an IEP or a 504 - I mentioned we had to fight for our ds' IEP - it took almost 3 years to get it, and once we had it, the school staff still had the same mindset that ds didn't really need help, so they didn't follow through with much of what was outlined in the IEP. We ultimately had to use private therapists for the things that we felt our ds needed in order to move forward and be successful in school, and even though it was not easy financially, it was worth it to have access to people who were motivated and able to actually help him, and it made a HUGE difference in his life.

    Sorry I rambled for so long! I hope some of it is helpful smile

    Best wishes,

    polarbear

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