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.