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

So I came across this article http://aeon.co/magazine/living-together/how-apraxia-got-my-son-suspended-from-school/ in my random internet searches on therapies for DCD/Dyspraxia (every few weeks or so I sit down and start researching DCD/Dyspraxia just on the off chance that I'll come across some info on some really helpful treatments for it and therapies, etc.) I could really relate to the article and the problems with the schools, a child acting out from so much anxiety b/c of an unaccommodated and misunderstood disability. So I contacted the author to ask him about his experience getting this disorder dx at CHOP (not good btw). He put me in touch with his wife who is a neuroscientist with a degree in psychiatry. She called me and I talked with her about our sons and our struggles for over an hour. As a result of her son, she is doing a study on dyspraxia and trying to bring awareness here to the US. It is well-known in the UK and she has contacts there and is trying to figure out what therapies have been successful there and see about getting them here. My son is going to take part in the study. It is even going to involve looking at brain images with MRIs. I am excited to be involved. We talked about how so often this looks like ADHD when it is really very different and how it often looks like a little like ASD. It was really good to speak to someone in real life from around this area who has a kid so much like mine, how the medical community here constantly wants to just label these children adhd or ASD even though it doesn't really fit and isn't appropriate. And it gave me hope that we get enough of a community together we can get some awareness and some help for this.

Anyway, just thought I'd share...There is hope that eventually our kids will stop being lumped in with adhd and asd inappropriately and be labeled and treated appropriately.

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?

I'm so glad you posted this as I needed to see a story like this to understand I'm not the only one dealing with people not understanding my DS. Yesterday I walked away from my DS6's classroom very frustrated with his teacher (I was a helper in the class for the morning). He has been diagnosed with a DCD by a neuro-psych who she greatly respects, but she basically admitted to me that she thinks he has ADHD even though the neuro-psych said he doesn't. I think she doesn't understand DCD and how it can look very similar to ADHD.

Does anyone have a good, simple article that explains DCD and how it can look at school to help her understand it? I think she is trying to put my DS in a box that she understands (ADHD), and it isn't the right place for him. The help and accommodations he needs are different from ADHD. I know the teachers talk from year to year, and I don't want her telling the teacher he will have next year that he has ADHD when he doesn't.

I have found that it's almost impossible to find decent information. And no one knows about it. I was reading a book about a foster family in the UK and how the foster child was diagnosed with dyspraxia like it was no big deal and now I know why. They actually know what it is there.

I sent this link to DS's IEP manager and teacher. The teacher said she had researched it already but I think she is a first. My experience is that no one has a clue what I'm talking about, even special ed teachers. The article talks about symptoms in adults but it applies to kids as well (IMO)

http://www.dyspraxiafoundation.org.uk/dyspraxia-adults/

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.

Have you had a chance to learn much about Chiari? I have close friends where the mom and two daughters both have Chiari. I know how hard it can be to get a proper diagnosis (also something rare that many people, including doctors, don't understand), to find information, and treatment options. Let me know if you want me to pass along any information.

Thanks for the link, too!

It was missed on the first MRI when he was around 4. I was told it was a normal MRI. Then he fractured his skull, ended up in the hospital where the previous MRI had been done, and the neurosurgeon looked at that old scan. He said that it was "borderline" in terms of the measurements. A couple months after the brain injury we had a "quick MRI" done and it showed the same thing as the other one (now over a year later). The neurosurgeon said that it looked like there was fluid getting through and it was nothing that he would do surgery on. He wanted to do a full MRI with sedation but we refused, because we didn't see what it would show that the previous 2 MRIs didn't show and I didn't want my child with a brain injury to be sedated. DS complains about headaches, but they don't seem to be "chari" headaches. Usually they are on his forehead on one side of the head or the other. He makes random comments that he gets headaches on the right side of his head, but I'm not sure what that's all about. (he had a basillar skull fracture on the right side of his head and it caused paralysis of the sixth cranial nerve, leading to his right eye being "stuck" for months but it gradually regained function). I am not sure if this is something that progresses over time, or if what we are seeing on MRI now is what we will always see. That's one thing you could ask (if you want).

From what I have learned from my friend, it is something that is frequently missed and misdiagnosed, and it can absolutely change over time. She was just diagnosed this year when she was over 40, but she said looking back she has had symptoms her whole life. They have just gotten more severe recently for her, which lead to more testing and the diagnosis. They can be different from person to person (and day to day), and the symptoms and severity can change over time as well. Chiari can also cause symptoms outside of headaches. I know my friend and her one DD suffer from difficulty sleeping, arm weakness, eye pressure... Her oldest DD, who is now 15, was diagnosed when she was either 11 or 12 and had surgery at age 13. Things have progressed for her again where she may be facing another surgery. I know at one point she was having MRIs at least every six months, if not more frequently, to monitor how things were changing. However, each person is different. So where your DS is now may not change, or it may. Again, I am in no ways an expert, but if your DS has been diagnosed with Chiari, I would highly recommend working with a doctor who has expertise with Chiari to understand what your DS needs. I can get you names of doctors if you would like. I know both my friend's children have physical restrictions to prevent any sort of head injury -- no trampolines, no roller coasters, no sports with balls, no gymnastics, no horse-back riding, etc. After a long recovery, the oldest DD was feeling good after her first surgery, and she started running cross-country. They have now learned that was a mistake because all the bouncing that her body did progressed her symptoms to the point where she may need surgery again.

Interesting. I will send you a PM since this is getting really off-topic.

We were told we have enough to diagnose dyspraxia in my son but I have not formerly had the diagnoses I putted as I was also told he would. OT qualify for 504 as he is working to far ahead right now to say it is impacting education. He papers as just a non athletic boy with some gawkiness about him...

I see it manifest in two ways predominately...
- handwriting which we privately support through OT and he is resounding brilliantly.
- motor coordination. He can't coordinate enough to execute karate moves, swimming strokes, and other sports well. His throwing and catching are very weak but improving with PT.

But I also see sensory and processing glitches that I wonder whether attributed to DCD or not.

- Sensory he is typically okay until in a new or social environment and then he becomes innate notice and overstimulated. The in attentiveness disappears once he becomes familiar with his environment...I feel well equipped to manage this.

- processing. I feel he struggles when taught specific processes. I remember trying to teach him time and it was like he could comprehend (he is EG/pG), same for subtraction with borrowing, counting money, etc. all of these things seem very sequential and we teach in a process.

My question is whether the above is seen with DCD? I'm curious as in my other post I stated we have not after a year of trying been able to tease out a LD diagnosis. Thus I'm still trying to figure out his barrier to achieving at his potential.

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

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.

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 .

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

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.

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.

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.

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

Polar, beautifully put. ITA about labels for all those reasons.

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

DeeDee

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.

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.

So, I was talking with a mom who has a child with special needs about getting an advocate, etc (she has been trying to get an iep and services for her disabled child for 6 moths now and getting nowhere)... And another mom chimed in with this comment: "Definitely get a lawyer or advocate to help you in {state county} because in that particular county, and in a few other neighboring counties, if you p*ss them off enough they will anonymously report you to CPS." She said that she has been working with Special Olympics for years and almost every family that she has dealt with in the certain state counties had been reported at least once and many 2 or 3 times - almost always around their IEP and getting the things laid out in their IEP. Pretty disturbing that this is apparently a strategy used by some schools

Crazy, although I'm finding nothing shocks me anymore. Who knows what kind of ridiculous thing children might say or do that could be misinterpreted, and then the school will just say "well we're mandated, we have to report everything." I have found that threatening to talk to the "State" works wonders though, in terms of getting cooperation. So it goes both ways. Especially since they know that I know laws have been broken and I'm simply being "nice" in not reporting them.

I have to say that this story really appalls me, especially as someone who works on the school side of things. If it truly is being used punitively, or to manipulate the family, it is completely unethical.

FYI, if you really want to scare a school system, invoke the Office of Civil Rights--as in, my child, identified with a disability, is being discriminated against, in the form of punitive actions against the family in response to advocacy for the child, or denial of services without a reasonable explanation. I would save actually filing for a last resort, though, as it will pretty much kill any remaining relationship you have with the school.

If OCR decides there are grounds for an investigation, they can turn over just about any rock they want to, including all kinds of things not that closely related to the original complaint.

I always say it in a very friendly off-hand manner, for instance I'll cheerfully say something like "I hope we can get this figured out and I don't have to call and ask the woman with the State again." Or I'll casually mention certain mandates, and how it's a shame that the people with the school don't seem to be aware of them, because at some point someone is going to get fed up enough to sue them, it's just a matter of time. That seems to do the trick nicely. I've never filed an actual complaint but it came close to that when I discovered that DS was not being pulled out for services, I inquired, and was totally ignored. I talked to someone in upper level admin and suddenly the next day everyone was pulling him out. But still, no one ever got back to me with an apology or explanation. No one ever apologized or explained anything, which ticked me off more than the fact that he wasn't being pulled out.