Dyspraxia & Apraxia Support Group

Hi I'm in NY--upstate--can you tell me about how you were diagnosed with Dyspraxia? My son suffers from something that I believe to be Dyspraxia but no one will listen to me. The school is testing him for LD's/hes been to a Neuropsychologist who will most likely say he's ADD(ADHD) since his apptitude and IQ testings came back above average. My fear is that he will be shuffled around and lost through the cracks. The school is already stating that he will not move into 2nd grade due to his comprehension being below normal. If you can tell me what Characteristics you had when you were younger and what the process was you went through to get diagnosed, I think it would help me alot. My son also has Gluten Intolerance which we know causes many disorders that involves the brain and nervous system to connect properly--However, our Lovely NY dr's are clueless to what Gluten can do to the body. I don't know if you have heard of this connection.

Have you ever read this website and if not could you and tell me your thoughts

http://www.angelfire.com/journal/ld...

Hi! Sorry it took me to get back to you.

I think I was born with Dyspraxia, but not a severe case of it. I do have two left feet, and my handwriting is ghasty and I tend to bump into things.

Yes- schools, and the educational system is terrible. Do not rely on them to be your advocate. Get your son outside testing- a lot of medical insurances will pay for it- and do what they say. The schools will have him fall through the cracks. It's up to the parent to be the child's advocate, unfortunately.

I grew up in Manhattan soooo many years ago, so my experience will be different than your son's. I texted my sister-in-law who has a special ed kid in Manhattan and asked her what her process was. She has yet to text me back. But when she does, I'll let you know. It might apply to you.

There is a Dyslexia organization that can help with ADD and other issues or at least guide you: http://www.dcprovidersonline.com/ida/

I used to work with Autistic kids a few years ago and my student's mother thought that a gluten-free diet would help him. To tell you the truth, all we saw was that it make the student tired. But she told us he did seem better in the morning so she stuck with the diet. So I say try it. A lot of people have vowed by it. But perhaps give him a substitute form of protein so he won't get so tired, if, in fact, he does.

It's so great that you are acknowledging something is wrong now. The school I was in kept promoting me to the next level even though I wasn't learning anything. It was up to my parents to put their foot down and get me testing and then I was sent to a special school for 6 years. That was in Manhattan.
I live in Westchester County where it's a totally different thing. Now the special ed kids are not in self-contained classrooms anymore but it's inclusion now, where there are two teachers in one classroom, one mainstreamed and one special ed, and the mainstreamed teacher teaches the kids and the special ed has a side session with the special ed kids who need it. It could work, if the teachers get along. This is very new concept. A money-saver for the board of ed, I bet. But it could work for special kids self-esteem to be in with the mainstreamed kids. I am not saying that your son needs this, I am just telling you everything I know. :)

I will look at th angelfire now. Let me just post this so I don't lose it. :)

Interesting about the anglefire. It makes sense, at leat in my experience. I don't have ADD, but I was underweight, and it was a prolonged delivery. And I do fit a lot of the criteria.

When I was in the special ed school...ok...I'll admit it.. in 1978-1984, it was about 98% male. A few years ago when I worked with the Autistic kids it was about 50-50. I had been told that boys acted outwardly and so, as they say, the oily squeak gets the oil..." or whatever that expression is. Girls tend to be able to hide their problems better and so weren't diagnosed nearly at much as boys.

I say study up on it, and try what makes sense to you. Your son is so lucky to have someone who is on top of it- willing to help him, even if the board of ed is not on your side.

Good luck! I will be here for you whenever you need! Please keep me posted! Have a great night and talk later :)

Starke thank you for replying, I am still researching Dyspraxia to see if my son fits the criterias the only thing he does not do is clap his hands when he runs--however he has an odd way of running--almost like his joints are stiff. He's been in OT/PT/ST for over a year now--there has been little changes to his abilities. He's been able to run now for 13 minutes straight in gym class which is an improvement but I still see alot things that are very difficult for him. Tying his shoes, I don't even go there--that would cause him to explode--I have started him on Synaptol which is helping with his explosive behavior, but still no sign of improvement with his comprehrension and understanding verbal communication. I need to figure out if he should see a Neurologist. The one I see is older and I think he would scare my son, but he's very good and up to date on all the newest research. Which is hard to come by here.
Please get back to me when you hear back from your SIL.
Thank You again

Hi!
Why do you think the neurologist would scare your son? Finding a good one, a thoughful one, is rare, no matter where you are, unfortunately. I know one in the city, I'm not sure if she knows anyone upstate but I can ask her. I think getting him tested, especially since there hasn't been much improvement, is important. I go to an adult dyslexia group once a month, and the next one is coming up in the beginning of May. I can ask questions on your behalf if you want. It's primarily dyslexia, but she tests for all LD so know about it all.
My sister in law never wrote back. Typical. I'll try her again. She had issues about schooling, since in Manhattan you automatically go to school in your district. I think it's like that all places actually. Her son stayed in a regular school but in a self-contained classroom but the other kids were autistic and he wasn't so it was very isolating for him. He's in a better school now.
Now is the explosive personality part of a disorder or frustration over not being able to do things? I had trouble tying (tieing....and spelling, apparently) my shoes as well. Finally I just figured out a way of my own. It wasn't correct, but my mom figured since it worked just leave it alone. Why not try shoes that don't require laces? It's good to conquer your problems, but sometimes prioritizing doesn't overwhelm the person. Oh, I remember zipping a zipper. Impossible! Or drawing. Or any sports.
I'm not sure about the stiff joints, but I see how it could be related. It seems like you are doing what you can with that. OT/PT, from what I have seen, does take it's time to work and you have seen some progress, so that's good.
Have you tried the gluten free diet? I see now more variety of gluten-free foods in the supermarkets.
I'll get back to you soon about my sister in law. It might not help because it's in the city- in fact, I'm not even sure if it applies to even where I am- but it might help, so I will get the info.
Good luck!

I have been GF for 4 years, my son now going on 2 weeks, I do think it's helping,, we can see a huge difference if he has been contaminated with it.

I think he will be scared of the neuro because he looks like a skeleton with skin. My son gets freaked out by elderly people who are thin and frail looking. Not sure why--He was freaked out by the first Neurospychologist he went to because she could have been a twin to the wicked witch from the wizard of oz, so we had to change who he saw in the office. The report we got was pathetic--it didn't say anything different then what we already knew. Even though we told them that he was in PT/OT/ST and it was written in his chart-since kindergarten--the recommendation was to get ST--and follow up on LD's--really, I didn't need to waist medical coverage on that. So back to square one-I have a message out to another psychologist group to see if they can test him for dyspraxia. I will keep you posted, and please let me know what you can find out for me. The Dyslexic group my have some suggestions or literature on referrals.--Thank You for all your help and support

Sowle, so sorry I didn't write back sooner. Been through some bad things.
Is there another neurologist he can see? As I remember, the testing is not the easiest thing to do, especially when so many things are difficult. And yeah, looking as old as dirt and looking like the wicked witch can be a bit frightening. And perhaps these people are not the most sensitive of people.
Sorry that things are progressing slowly. That seems to be the way with special education in NY.
Perhaps you have this already, but I found an online manual for parents of special ed kids in NY.
http://www.p12.nysed.gov/specialed/...
I haven't been to group yet, but hopefully I will in a few weeks.
Not sure if you are near Albany, but here is a website that might help:
http://www.capitalneuro.com/
When I get more info, I will let you know. Again, sorry for the delay. Hope you are having a great Mother's day!

HI

As a dyspraxic myself what I would say is not to get too caught up with looking for specialists. There are a lot of simple things you can do to help your son at home. Catching a ball is very helpful as is walking along walls when out and about to help with balance. Learning the piano was frustrating for me but I think it helped. Encourage your son to learn to type - the faster he can do this the more able he will be to express his thoughts in his schoolwork. it is awful when your fingers cannot keep up with your brain and writing with a pen is so hard for some of us. You might also look into improving his running gait as you mention it is awkward. Let him run in the back garden, maybe film him so he can see how he looks to others.

Re the freaking out - I was like that too with certain people.