Gifted Issues Discussion homepage Forums Twice Exceptional Dyspraxia/Developmental Coordination Disorder Help

Just wanted to second what CAMom said re working memory - like her ds, my ds scores very high on the WISC WM subtests - but they are very specific task-oriented tests. What's important is to think of working memory (in relation to dysgraphia) as a bucket - there is only so much space, and there are a large # of tasks that have to be held in the bucket while doing work. For a dysgraphic kid, the tasks associated with forming letters are so consuming that there's no room in the bucket to drop in other tasks such as how-to-spell etc.

Also like CAMom, my ds' coding raw score has not increased over time, and his handwriting legibility - which looked great coming out of OT at 8 years old, still looks exactly like it did at 8 - it's neat, and it's legible, but in the meantime while it's stayed looking the same, his neurotypical classmates' handwriting has continuously improved to the point where ds' handwriting stands out as very immature looking now that he's a teen.

[/quote]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.[/quote]

This is true for our ds too - he's learned (slowly) how to do many of the motor tasks that were challenging when he was younger, but they are s-l-o-w, almost like watching a movie in slow motion.

I also wanted to second the recommendation for the CanChild site - there is a lot of useful info out there! I haven't looked at it lately but remember referring to it back when we were first advocating (even though I'm not in Canada :D).

Best wishes,

polarbear

I just wanted to say that I find that linked story so disturbing I have read it a couple times. If it can happen to a well-educated, well-to-do family it can happen to anyone. It reminds me so much of our school and I can see something like that happening here. They report families to CPS or the police without bothering to discuss the situation with the family or get the whole story, they fail to do evaluations when parents have concerns, gossip and talk behind the back of the family, falsify records when backed into a corner, etc. etc. etc. I think it's a disgrace that apparently nothing happened to the school or anyone in it. They didn't have to pay any damages? No one was fired? Schools do this because they know they can get away with it. No one ever loses their jobs and nothing ever happens.

Curious when other kids with DCD hit milestones like swimming and riding a bike? DS (turned 7 a couple months ago) can do both yet he struggles with other things that should be pretty basic, like kicking, throwing, catching, hopscotch, etc. Last fall he was tested as part of the IEP eval and his gross motor score was "well below average", I think 2 standard deviations. I didn't even try to teach him to ride a bike because I thought that would be stupid and asking for another skull fracture, but as soon as the snow melted off the sidewalk, he jumped on his bike which I had forgotten I had bought, and took off down the sidewalk like it was nothing. I looked out the window, and there he was flying past the house on his bike 5 minutes after taking it out of the garage. He also does strangely well with swimming and can now do most of the strokes after about 20 lessons. He's not above average with motor skills by any means, but not particularly delayed with some of them, either. I guess I'm just curious what others' experiences are--whether your DC do strangely well at some motor tasks compared to others.

Also, those of you with older kids--have you seen an improvement over time in terms of coordination? Or when adolescence hit? Dh thinks that he probably had/has DCD but he does not seem obviously impaired to me. Same with my brother...he does much better now than he did as a child.

My DS is 11 and the easiest way to describe his motor coordination is awkward. He is well aware of it and will over accentuate things just to be weird on purpose- so it isn't weird on accident. He was in PT for balance and gait issues and too many tripping on "air rock" issues.

He learned to ride a bike at 7 with little problem. However, he still forgets all the time how to backpedal his coaster brakes (or which hand brake to. Pull if he is on my bike) and he prefers to just drag his toes until he stops. He can swim, but it isn't pretty-his right side is smooth and long and his left side is short and floppy, so he never goes straight

He is a competitive fencer and does quite well, no national championships or anything- but he is in the middle or the top of the pack most of the time. Our PT attributes this to the balanced stance and lack of midline crossing in fencing. She said they actually teach stroke patients to Fence sometimes, because it is something they can do without dual-Brain sided functions.

He can't jump rope, despite hours of effort. Can't hula hoop, play hopscotch or catch a ball smaller than a beach ball. He can throw accurately, but with no idea how much pressure to apply, it might be way, way too hard of a throw. Contributing to it all, he has hyper mobility and almost but not quite enough symptoms to diagnose Ehler Danlos. So what is the DCD and what is general floppy/stretchy problems is hard to determine.

The complicated thing about DCD is that it impacts individuals differently - and it's not really even or predictable necessarily in one individual. DS did not learn to ride a bike until he was around 7 years old, but when he did learn it was all of a sudden he was riding like he'd been riding forever. Biking quickly became (and still is) his favorite sport. Team sports were no fun for him when he was young because his lack of coordination meant the other kids didn't want to throw the ball to him etc. His middle school was small and children were encouraged (sorta actually *had* to) include all the kids in team play, and that actually helped ds quite a bit in terms of enjoying team sports. They will never be his favorite thing, but he finally had the chance to be actively participating, and that in turn fed his self-confidence enough that he became an active participant.

Early gross motor milestones were delayed. DS still doesn't really know how to swim in spite of quite a few years of lessons. Only one of my kids can hula hoop, so I don't hold that up as an indicator of DCD But for the data point, ds can't hula hoop lol! He had a tough time with catching balls etc when he was younger - still isn't great at it but has improved. He is extremely clumsy with kicking balls. He also has hyper-mobility in some of his joints.

And it took him a long long time to learn how to zip a zipper, tie shoes, etc.

polarbear

Thanks for sharing polarbearand Camom. Strangely DS seemed to be actually advanced as an infant. I have a photo of him standing on his own holding onto the couch when he was 4 months old and he could sit up well before 6 months, was walking well before he turned 1. He was actually more advanced than DD. He seemed somewhat low tone in his upper body but not lower. Then between 1 and 2, motor development seemed to stop. When other kids started jumping/hopping around age 2, he couldn't do that at all. Same thing with speech--it started at a normal time but didn't develop. But cognitively he was doing well and could put together puzzles, disassemble things, etc. Sometimes I wonder if it was something environmental or related to all of the problems with his ears (basically, he was always sick and had constant fluid). Or whether it was (and still is) just really uneven brain development. We'll probably never know. I keep hoping that at some point we see a big spurt and he will "outgrow" the DCD but it will probably always be there to some extent.

Hi all, not much time but wanted to add a few things about my DS's (who is presently 8 1/2 years old) history, while I have a little bit of time. So my DS seemed slightly behind as a infant - I remember being concerned about his lifting his head during tummy time, not rolling, etc. I realized how worried I was when at 6 months I took like 30 pictures of DS finally lifting his head on his tummy. He was a fatty so I put it down to that. And he wasn't VERY behind - not enough to raise alarm bells. He did crawl at 7 months and cross-crawled... but not for long. He walked early - end of 10th month. He also signed a lot (American Sign Language) and talked so well ... very articulate )his mouth area was never affected - at least not in terms of speech or even breastfeeding or drinking from straws and cups). So, we didn't notice his fine motor was low. He also found ways to compensate and we sort-of missed things. Anyway, at three years old, a pre-school teacher pointed out his fine motor was pretty low and he would w-sit a lot (and he did, I just didn't know w-sitting was bad). She also pointed out he had poor ball skills. He hated coloring and even drawing. He loved to paint. But, he could walk, jump (we had a trampoline though and he loved moonbounces), do stairs, play on playground equipment. However, I started noticing things were really off as did he around four years old. He would become so frustrated with himself that he could not make letters to draw shapes. Furious with himself and was the one to point out to me that all the other children could do it easily and he couldn't. That's when I started looking, googling, asking other moms - particularly moms with kids in therapies, etc. A mom who had two children who had been much more challenged with gross and fine motor than mine recommended I get him evaluated by PT and OT and she recommended some places. Thank God for her. That's when I found out that he was over two years behind in fine motor. It seems a bit silly now but I was really upset! I got home and when he couldn't see me I sat looking at the report and cried and cried. (I did that more than once after OT and PT evals.) My poor kid and I knew that one just isn't "a little behind" at that kind of delay ...

He had some trouble with the bike. The PTs/OTs were always happy he had good balance and that helped - it was the pedaling (the bilateral coordination). He did the balance bike and loved it but pedaling always eluded him. He never rode the tricycles, big wheels, etc. (we bough like 4 different ones - DH always insisting it was the bike not the child.) He learned to ride the bike with no training wheels nonetheless and then forgot. Nevertheless, he did master it for good at 5 years old (late 5). Swinging was another skill he learned at 5 and then forgot a few times and had to re-learn. Swimming has been the most challenging. He would learn and then forget. He also would be the only kid not moving up in swimming lessons. I finally had to get him year-round, private lessons from a relatively "hard-core' instructor (he and I discussed it and he said he was willing to go hardcore as he was determined to get it... the instructor was a little harder than the ymca but not super hard like throw-kid-in-deep-end hard, which would of course have never worked anyway even if I were the insane type of mom to do something like that). It's still slow going but he can swim and is good enough to go down the slides and be in the deep end. He is still getting lessons. My DS's fine motor skills are the ones the most affected - he simply can not write. He has a terrible time with any upper body ball sports - baseball, basketball, football. But is okay with soccer, ice-skating, rollerblading, etc. He just started playing ice hockey! I intend to get him instructional small group basketball and football lessons so that he can at least participate during recess. It helps if he gets one-on-one specific instruction with a lot of repetition. He can't just pick things up with regular instruction like other children. He also has incredible determination to at be able to do things somewhat competently so that helps. He will push himself to the extreme for certain things.

My DS cannot tie his shoes, yet. He has trouble dialing a phone, he is just starting to know his phone number and address. He cannot multitask. Princeton neuroscientists says this is because he needs all of his mental energy and focus for the motor task at hand he can not do more than one task at once or listen while doing a motor task, or talk while doing a motor task, etc. This is exactly what I see - it's not an attention thing (though it can look like adhd) it's the motor-tasks and motor planning are so challenging he doesn't have the brain-space, the attention space, etc. I TOTALLY agree. Finally, someone who gets it.

The neuroscientist at Princeton tells me that often it seems some children are affected more in fine motor and some more in gross motor. She also mention it seemed like some kids had more coordination trouble with the legs area (not my DS so much) and others had more effects in their arms/upper body area, and that would be my DS.

I think the therapies my DS has done have helped. He can't write but his over-all coordination is better and he continues to improve. I think all of the work has been worth it -particularly vision therapy and this weird 'coordination/crossing mid-line therapy' that he did in conjunction with a "listening therapy." Not sure how successful the listening therapy was but the physical therapy they did was great for his coordination and strength, I think. I had tears in my eyes watching him out there playing hockey today. Tears. He is the 'worst' guy on his team right now but still is doing really well and so much more than I had EVER expected! Neither he nor his team seem to care. His team is so supportive ... his coach puts him out there but also pulls him right in when he sees him fatiguing (really nice - why can't teachers be like this?) and is really encouraging and DS is improving and loves it. I couldn't believe my eyes today (his first game) and I was also so scared and nervous for him. He was in heaven.

I think my DS is probably on the more mild side of the spectrum. I think he needs extra support and repetition for motor tasks. He'll never be a great athlete but it looks he'll be competent enough to have fun and participate. But I do think he definitely has DCD.

This is how my DS's swimming is!

Seriously. And this is real. I actually talked to these people and they are really intelligent educated people. The case transcript is online too. My DS's school was never this bad... But our experiences were definitely reminiscent of this and my DS did end up with anxiety disorder because of school and how poorly he was treated. The complete lack of understanding of the disability and the tendencies to view it as some sort of behavior challenge rather than be willing to address it as a learning disability that, when there are no accommodations and support, results in "behaviors" feels very, very familiar. Also the absolute refusal to see a problem with the writing or a writing disability rings so true. In our school, I insisted they look at DS for writing disability despite his teachers insisting he was fine (even though it was soooo obvious he was not fine!) and had a behavior problem not a writing problem (he's "off task," he's "too slow" due to attention not writing problems, he's "oppositional" not struggling with the motor task). The writing disability was not identified as a result of that school eval. Why? I realized this year that they tested him mostly for adhd and not a writing disorder (even though I specifically asked that he evaluated for dyslexia and writing disorder). Then school psych, when discussing the eval with me, casually mentioned that writing improves when adhd meds are introduced. They really just do not want to identify writing issues at all. They seem to push adhd (even though at that time the BASC did not even support an adhd dx.) It is so weird to me... I am not sure if it something purposeful or what. Often I suspect that it easier for them to deal with adhd b/c there are drugs for that and it is on the parents really to do something about that as opposed to a situation of a learning disorder... it seems like with a learning disorder the onerous switches to the school to do something, i.e. provide several accommodations involving technology and extra people and to remediate the disability.

DD has a problem with writing--whether it's a learning disability or related to the ADHD (or both), I don't know, but all the teacher wants to talk about is her focus and "holding her accountable". If I sent her links to to graphic organizers the teacher would probably be lost. Already asked if DD could type stories instead (at least try it) which was ignored. It's true that the meds have a profound effect for most kids with true ADHD. But so many other things tend to go along with ADHD. So then we are left with the situation of trying to figure out the med dose and maybe it's too low? Too high? When the med dose might have nothing to do with whatever problem the teacher is seeing. The school psych went into her second grade class last year and observed (at my request), and wrote to me and told me she was perfectly focused and fine, and the teacher agreed with her, so we hit a brick wall. I hope the next school is more receptive to trying to help figure this out.

I had the same concerns with DS lifting up his head. He HATED tummy time. And he had problems pushing up on his arms. In physical therapy now at age 7, he still has problems with that, for instance the therapist will ask him to lie on the floor on his belly with his chest and legs both off the floor and he can barely get his chest off the floor. It's hard for me to figure out what is a "low tone" issue with DS and what is related to coordination. It's probably a little of both. For instance jumping. Are his legs just too weak? Or he can't coordinate the movements? For jumping his legs seem to actually collapse if he jumps off high surfaces (like more than 1 foot high) so I think he must be low tone but why could he stand up at 4 months old then? I never really got a good explanation for why an infant with advanced motor skills could turn into a toddler with delayed motor skills. The neurologist I took him to at age 4 told me he probably has dyspraxia and said that the motor skills become more complex and complicated as kids get older and it's those things that DS has problems with...but walking is pretty basic (but why do so many kids have trouble with that then?).
DS's gross motor skills seemed to plateau first, then the fine motor around age 3. He was actually scoring average on fine motor assessments until age 3, then it was a downward spiral. He went from maybe the 40th percentile to <5th percentile in a matter of a year. Good thing I was on top of the situation and took him in for another eval. So many parents would have seen the 40th percentile and decided that from then on that their child was fine and couldn't have a disability.