Gifted Issues Discussion homepage Forums Twice Exceptional Finally, and accurate profile

Just thought I'd update you all and get your insights if you have any to offer. So, the school FINALLY tested him specifically for dysgraphia/disorder of written expression (yes, they actually used the word dysgraphia! In the report! More than once even!) They gave him the Bender-Gestalt and he scored in the 12th%ile - below average (this is actually up from last year where he was at the 5th%ile.) They gave him handwriting fluency subtests of Process Assessment of the Learner where mistakes in sequencing were noted and it took him 120 seconds for him to print 26 letters - below average. It took him 129 seconds to copy a 9 word sentence - below average. In paragraph copying, he copied on 11 1/2 word in 3 minutes and missed several words from the first line of the paragraph. Needless to say, his score was below average on this as well. He actually scored above average for the TEWL and on grade level and average for the spelling - shockingly.

Here are just some of his scores for the PAL-2:
Alphabet Automatic Legible Letter Writing: 6
Alphabet Legible Letter Writing: 3
Alphabet Writing Total Time: 7
Sentence Copying Automatic Legible: 4
Sentence Copying Legible: Letter Writing: 1
Sentence Copying Total Time: 6

Is it me or are these scores REALLY low? Aeh? I have more if anyone is curious, I just didn't feel like typing them all out ... but the remainder are the same low one-digit scores.

So, finally, we have report that lays out how abysmal his handwriting is and he has been identified with a specific learning disability of dysgraphia/disorder of written expression. Of course, I am happy to have it identified finally. But there is always that sadness that one's child has a disability. I look at these writing scores and I wonder how this kid will get through life.?I gave him a form to fill out yesterday b/c I was making dinner and didn't fell like scribing for him and just thought this is something he should be able to do. The form was almost illegible. And the numbers for his dates still all backwards. I was like, "Ds you do need to be at least functional enough to fill out basic forms." No it was not my finest moment. But it was just one of those times where I was like "wow, he really looks dysfunctional and delayed. He should be able to do this somewhat functionally!"

But, anyway, nice to have detailed report from school pysch as part of DS's IEP identifying dysgraphia, showing specifically where his weakness are in writing and giving recommendations for accommodations, etc.

This same week, we also got a brief report from neurologist that diagnosed him with "neurodevelopmental syndrome which includes motor apraxia, delayed processing speed, and dysgraphia." She said she didn't think ADHD but the motor apraxia and low processing speed can sure cause a kid to share some of the same type of challenges that plagues one with ADHD. So, more 'medical stuff' solidifying the true nature of DS's challenges - a medical diagnosis of dysgraphia and motor apraxia (dyspraxia). She did say his dyspraxia was an odd presentation and she would like to at some point in the future when we are comfortable with it do an MRI - for one reason to make sure he doesn't have mild chiari malformation and also because she thinks there is some mild/slight damage to the cerebellum (I think that is what she said???) Something like he's a bit different because his balance is strong and good but his coordination is weak and that sort of profile is consistent with some sort of mild cerebellum damage/deficit. Finally, the doctor said even though he doesn't have ADHD, 50% of the time ADHD meds help kids like DS (and others with dyspraxia) with the slow processing and motor planning difficulties. She said any time we want, she would give us a script to try them on DS. So ,now I still have this med dilemma! I can't escape it, it seems. I am torn, the adhd meds scare me, especially stimulants, for this kid. At the same time I feel tempted like, 'I could give this kid a pill and his life would be so much easier? Why wouldn't I try that?!' BUT not necessarily, doc said we only have a 50/50 shot. I guess it's nice to know I could have him try it I we want. But, at the same time I am unnerved by this "you know we could put him on a few drugs and see how it goes" attitude. I mean the kid is 8 years old. Aren't these drugs pretty serious for that kind of attitude? I also worry about a drug-dependence on them. On the other hand, his processing is so low and his dysgraphia pretty bad.

Anyway, at least now we have what I have been pursuing - a pretty accurate profile of DS, which is gifted with dysgraphia and mild motor apraxia as well as Ehlers Danlos. It makes me happy and sad. So weird.

In other news, DS is apparently moving two levels in reading. He is thrilled. I am a little freaked. When they said he was staying at DRA Instructional 34, I was annoyed. I thought obviously he has progressed to next level and you guys just don't want him that far ahead. I figured I'd fuss and at the most get them to re-test and he'd move to Instructional level 38. Well, according to DS, it looks like he is moving to instructional level 40 at least. Of course they are testing the heck out of him again with QRI and DRAs. They spend more time testing this kid than teaching him, I swear. So what the heck? If I hadn't said anything they would have left him at 34? DS is thrilled! I am nervous. Is he really getting that far ahead?

Irena- I'm happy for you that you have more answers about your ds. This has got to only help get him what he needs!

Great about increasing his reading level! Always trust your gut, right?

Thanks Melessa! Yes this is all definitely good! I feel like - 'okay we can stop looking now ... we know what's up, now we deal with it. '

Yay Irena - this is GREAT news!!! I am so glad that the school has completed an veal and that they've acknowledged and documented his dysgraphia etc.

I also had one of those goofy 2e parental moments of "glee" when I saw your ds was given the PAL - that was a test that was thrown into my ds' IEP eligibility review when he couldn't come up with enough words to score on the TOWL... and since it was a *school* administered eval, I couldn't get *any* info on the test from the school other than the one subtest name and ds' score... and when I tried looking for info online I couldn't find anything.



I am sure almost all parents who've been through this process of knowing something was up, struggling to get to the answers.. know that feeling in the pit of your stomach when you actually get those answers - even though you know in your heart and you've seen your child struggle, it's still hard to hear. I don't know if it will help, but I'd like to share something that my ds has shared with me and with his teachers this year as he's come to the end of middle school. DS absolutely *hated* being different when he was younger (actually he still does not really appreciate having to "be different" when he does schoolwork using his accommodations)... but elementary school was really hard. I am sure he would have given anything to have been able to not have dysgraphia or his challenges with expressive language. But if you ask him now if he could go back in time and change anything, he will tell you no, he would not take away the dysgraphia because it is a part of who he is, and he likes who he is. Your ds is going to be there someday too.

And yes, as my ds' mom - no matter how happy I am that my ds is self-confident and self-accepting and ok with the world - I still get angry about it sometimes. There's no getting around it - having an LD takes away a huge chunk of time from childhood that I wish could have been spent on just being a child. It also re-wrote how I spent my time as a parent - those "What to Expect When You're Expecting" etc books never include planning ahead for advocating against a brick wall. So yeah... um... if *I* could have changed his childhood, yes, I would gladly take away the dysgraphia! But really that sadness didn't stay for long, and the times I feel angry about it are just fleeting, and I try to use the energy from those feelings to help make the path a little easier for the 2e kids coming down the line. Not that there's much time for that - sadly school advocacy is still taking up too much of my time!

Thanks so much for posting your update - you are an amazing advocate for your ds - I am inspired by your successes!

polarbear

This. I sometimes dream of what it would have been like to have a child who didn't need as much support from me.

I'm glad you are getting some answers and that the school is finally taking action.

Just a couple questions for you--why did the neurologist want to check for chiari--as in, why does he suspect there might be one?


Because DS has a borderline one that MRI DOES show but no one has ever told me that has anything to do with his motor issues.

Our kids have very similar issues with the dyspraxia, executive functioning issues, etc. My DD is like your DS in terms of writing fluency. She has obvious ADHD and is medicated. Her handwriting is neater on meds, but she still writes really slow and can't think about what to write. She doesn't have DCD or dyspraxia, just some very mild fine motor coordination issues.

DS does have DCD and his handwriting is fairly fast, just really sloppy. If he writes even somewhat neatly, he has to put a lot of effort into it.

DS's current teacher has been telling me he has major focus issues with math and writing. However, he is perfectly focused if he does math/reading tests on the computer. He did hours worth of assessments on the computer in one day and was focused. Seems odd. I went in and watched him during writing and he looked like a space cadet. The psych went in and watched him and said he was on-task with math (where he had to write, not on the computer) 49 percent of the time and it should be more like 80. We (and teacher) filled out the BASC and the Conners. Teacher versions were very borderline for attention issues, but teacher was adamant that he sits there and daydreams all the time and she has to give him cues to get to work every couple minutes.

The primary care doc looked at everything (including the computerized testing that the neuropsych did last fall--it was also borderline) and said she could make a provisional diagnosis of ADHD and wrote us a prescription for ritalin as a trial. DS has only been on it one day (a low dose), but the teacher called me and said it is like a night and day difference, he was focused with writing the entire time he was medicated, and his writing was a lot neater. I'm curious to know how his other motor skills are, I haven't had a chance to observe that. So if he really does have ADHD as one typically thinks of it, I don't know, but the medication is clearly helping him focus on written work (math and writing). Just thought I'd throw that out there.

Hi Blackcat, I don't know much about it but chiari malformation can lead to muscle weakness, hypotonia, problems with balance and coordination. Doc says if he has one it is mild or borderline because she doesn't see major symptoms of it but it's worth checking for when we are ready. This is not the first time I have heard this, though... and have had in the back of my mind that one day I will want him to get an MRI to check about it.

Thanks so much, Polarbear and MON. Your experiences are so good for me to hear and I learn so much from both of you. Thank you so much for being here and giving advice, insight and sharing your stories! And giving us hope!

I remember reading about this but figured people would only have symptoms like that if the chiari is fairly severe. DS doesn't even have headaches. What's interesting about DS though is that he had normal motor skills up until he was around 1.5 and then we started noticing issues. Maybe I should find a chiari specialist and get it checked out again. The pediatric neurologist didn't even pick up on the chiari. She told me it was a normal MRI. Then when he fractured his skull about a year later the neurosurgeon looked at that past MRI and said it looked like a chiari. But he also told me that DS would have to "learn to live with" his eyes being completely misaligned. Hello? There is strabismus surgery? I was really upset, thinking DS would have crossed eyes for the rest of his life. It turned out that we didn't even need surgery, the cranial nerve healed itself. He just didn't seem to have the knowledge I would expect. I'm so tired of going to docs who don't seem to know what they're doing. It's esp. troublesome when you're talking about possible brain surgery, which is done for some chiari cases.

BTW, DS is the same way in that his balance is a lot better than his coordination. His balance is probably like the 80th percentile and coordination maybe the 25th or 30th (mind you, this is after a year of physical therapy), bringing him up to 52nd percentile overall. His private PT was just telling me today that she is exiting him, and also that his balance is very good compared to other motor skills.

Nope, not just you. These scores are pretty low. The legibility scores are appallingly low. These are scaled scores, so 8-12 is average, 6-7 is below average, 4-5 is low, and 1-3 is extremely low.

BTW, the PAL/PAL-II has interventions paired with it, which the school may already have, if they bought the intervention kits with the assessment kit. Process Assessment of the Learner Guides for Intervention, and PAL Research Based Reading and Writing Lessons. The latter specifically designed for dyslexia and dysgraphia.