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Lori,
You know that I'm an OT. I am horrified to hear that you were told it was "too late" for OT to have an impact. I have worked with many 10-13 year olds who made great progress in skills like handwriting using a combination of sensory integrative based therapy (which focuses completely on the functioning of sensory processing systems, including vestibular and proprioceptive, as the foundation for praxis and skills like handwriting) and either Therapeutic Listening and/or Interactive Metronome. I strongly urge you to check the websites and see if you can find a provider near you.
Therapeutic Listening: www.vitallinks.net
Interactive Metronome: www.interactivemetronome.com

Neither OT or PT can "fix" the dyspraxia but the right therapy can and will make a difference even at the ripe "old" age of 11. You just need to find the right OT and the funding for it. I don't remember where you live, but check for a local Center for Independent Living to help you with resources for funding if you can't get the therapy covered under insurance.

Feel free to PM me if you'd like.

Thanks again everyone. I have been on the internet for the last four hours trying to find more information about the dyspraxia and sensory issues and looking for a physical therapist who is also certified in sensory integration. I haven't had any luck yet. When I called the first place on my list, I asked the receptionist if they had any therapists with experience in working with kids with motor dyspraxia and sensory integration dysfunction. She told me to hold on, laid the phone down so I could hear her talk to one of the other people in the office and said "There's a woman on the phone whose kid has motor "dys-func-tia" or something that I have never even heard of--can you talk to her? I then got to talk to someone who told me there might be someone at another location who could help him about a 40 minute drive from us. I called that location and was given a phone number and I left a message several hours ago.

I can't find any place near us that offers interactive metronome or therapeutic listening.

There are no support groups anywhere near us and I am wondering how rare this is and especially the combination of verbally gifted with motor dyspraxia. I wonder why I can only find support groups in other countries. It seems like nobody even knows what dyspraxia is in this country.

I am trying to figure out what kinds of problems my son might have in the future because of the problems with handwriting and drawing and his lack of ability in jigsaw puzzles and the motor planning/motor memory problems. My son doesn't think the dyspraxia will have that much impact on his life when he is an adult because he can compensate for most of it. It just slows him down. He still tries to argue his way out of doing things that require motor skills. He still wants to know why I insist that he use rudimentary writing tools when so much technology is available to help with his problems. He says he would rather spend more time increasing his typing speed. He says he will use a calculator when he is an adult and is more likely to be carrying a calculator with him than graph paper when he needs to do a math problem in real life. He thinks I am wasting his time making him write out problems when he can get the right answer without writing out every little thing. He wants to go to college but he says he will not take a lot of higher level math classes. He knows there are some degrees that do not require a lot of higher level math. I think geometry will be a problem for him but he says he doesn't expect to go into anything that requires geometry and when I think about it, I never used geometry after high school.

I told him he needs to be able to write well enough to fill out job applications in the future and he already knows that a lot of job applications are done online now because his sister is looking for a job and she talks to him every day about it. He both encourages her and gets on her about procrastinating. She in turn shares her sisterly advice and talks to him about getting busy on writing his "excuse book."

I wish I could find one person with an older child like mine who has found the answers I am looking for. I don't believe it is too late for therapy. I just need to find someone who can provide a comprehensive physical therapy/sensory integration therapy plan and it is not easy to do when you live in a small town like mine.

Lori,
It sounds like you began with three possibilities.
1. Find the perfect PT who also has sensory integration certification and will develop the comprehensive plan for your child.
2. Find a PT who doesn't have sensory integration certification but still could help.
3. Be convinced no one wants to help, be paralyzed and hopeless.

Take a couple of days and if you can't find you can't find the first thing on your list I'd suggest moving on to #2 knowing that it could still be a huge help to your child.

I offer this advice as the parent of a teenager who has nearly identical diagnoses (plus a few more). It is great that some PTs are well educated in sensory integration, but we didn't have that option and therapy was still a HUGE HELP for our son. OT was also some help. Having a home exercise plan and integrating different types of movement and strengthening training into his life also made a big difference. Yes, he still has stuff he struggles with and it will affect him every day of his life, but he will still have a very good life.

I know "somebody has got it worse" isn't always a helpful thing to hear, but I will share that for our family spending a lot of time at the PT clinic was a good reminder of three things: 1. There are always reasons to be optimistic about improvement. 2. People are resilient. Your son is right, he will find ways to learn to adapt and that's a positive thing and 3. even people with far more serious disabilities can have good, productive and meaningful lives.

I would also think about whether or not some kind of help from a psychologist may be helpful. It is a fairly normal part of the process that kids with disabilities and their parents, can use some outside help and support to deal with anxiety and depression problems that can result. It sounds like your son has been having some struggle with figuring out what his disabilities mean and how he will cope with them and that's something a psychologist may be able to help with. Getting this type of help for family has been as helpful as OT and PT.

I finally found a PT about 40 miles away who is not certified in sensory integration but she has some of the same issues my son has with the pain after walking, so she understands the pain. She told me she has flat feet and she will check to see if my son does also. She has a 9 year old son who has very mild dyspraxia and is borderline low tone so she has experience with these issues. She says she can help my son and it is definitely not too late. She also said something about working on core strength and that the things she will do with him will help with handwriting and fatigue issues.

I am also trying to get my son into a homeschool drama class for middle and high school age students so he can be around other kids and have fun. There is no dancing required. The class description says they start out each class doing improv exercises and this is what I think my son is good at but he didn't have the chance to do much of this in the musical theater class he was in since age 4. His ability with improv and being able to copy people's mannerisms and typical things they might say in a comical way, leaving no doubt the character he is imitating, is one of the things I found so confusing. It made me wonder how it could be motor dyspraxia because I think this would require motor planning and he is able to do it without thinking. He was also able to do something on the test that seemed like it should have been hard for a kid with motor dyspraxia to do but he did it and it just doesn't make sense to me. I asked the neuropsychologist about this and she said sometimes people with dyspraxia can have "splinter skills."

I think those splinter skills made it harder for some people to believe he had this disability. I am so glad I finally got confirmation of this disability so he can finally get some help. I think he feels better now that he has proof that he is not lazy. He just has some problems that he has to work around that other people don't have to deal with.

Piano is one of those areas that he will probably always have difficulty with. I don't know that he will ever be able to memorize a difficult song to the point where he won't have to look at the music. While I am still able to play songs that I memorized in piano lessons many years ago, he has difficulty playing a song from memory that he did at his last recital several months ago. It doesn't seem to be just a matter of practice. He practiced that song (a relatively easy one) a lot until he could do it, but when he stopped practicing that song after the recital, he started to lose the motor memory. Motor related things just don't stick in his mind the way everything else does, but I know he can work around it as he did in dance, when he found he could convert the sequence of dance steps to verbal memory by naming each of the dance steps and using his good verbal sequencing ability to compensate for the lack of motor sequencing ability. It just made me angry when other people assumed he was lazy and not trying when I had already explained his issues to them. Sometimes other people, like the acting teacher, were even verbally abusive when he tried but was a little slower to learn the sequence of dance steps, causing everyone else to have to rehearse the dances more than they normally would have. I worried about how it would affect my son's self esteem as he is going into those middle school years that are difficult for most people. Dealing with people like the acting teacher has caused some anxiety because I am torn between the feeling of needing to protect my son and feeling like he will just need to get practice in dealing with people like this while he is young and has our support. I would have liked to find a support group in my area to help us deal with things like this, but there are none.

My son won't admit to having anxiety. He told the neuropsychologist during testing that he was not feeling any anxiety, but she could tell that he was anxious. I think he refuses to admit his anxiety because his dad never seems to have anxiety about anything and he doesn't want his dad to think he is weak. He told me once that he thought his dad thought he was weak and I could tell that this really bothered him. I think if he could just talk to other kids who were dealing with similar issues he might feel better about it.

Hi Lori,

I found this site accidentally (when I googled dyspraxia with Interactive Metronome which I'm looking at for my son) and just felt I had to chime in. My son is not gifted but does have dyspraxia and I have spent years looking for information and ways to help him and reading what you've said above I have a couple of suggestions. It's definitely not too late and there's lots of things you can do everyday that will make a difference.

First I want to ask if he's ever been checked for retained infant reflexes? One in particular - the ATNR - can make handwriting extremely difficult. If he's not been checked you can do this easily yourself. Google ATNR and you'll find Youtube clips showing how to do it and then there are exercises that will help integrate the reflex. Think of a baby lying on its back that turns it head to one side. That arm will automatically extend and the opposite arm will flex. If this reflex is retained it can make it very difficult for the child to write because once it passes the midpoint and the head starts turning the arm will want to go with it.

I also found my son didn't get dizzy. The vestibular system was not receiving messages properly. As well as OT exercises to stimulate the vestibular system (the PT will cover this) I took every opportunity to encourage him to swing, jump on the trampoline, spin on merry-go-rounds or just around the room. He loved it because he was craving the stimulation. The day he got carsick for the first time I knew we had made a real breakthrough! Best of all, after years of standing on the sidelines he can now play soccer with his friends. He used to fall over when he tried to kick the ball and the game was just to chaotic for him to cope with.

You mention the feet and pain in the legs. I resisted for a long time taking ds to a chiropracter but I regret that now. Some chiropracters controversially claim to help with dyslexia and dyspraxia so there is a lot of negative literature out there. DS was unable to stand with both feet facing forward and I noticed that he generally had all the weight on one foot. When he started requesting us to stretch him I finally gave in and took him. He had gotten into bad habits because of his poor balance (e.g. standing with his feet pointing outward) that had actually knocked his back out of alignment. I could see that one hip was higher than another when I was shown. He's much more comfortable now and he's working on his posture. Not easy for a child with dyspraxia because of the low muscle tone.

It doesn't sound from a quick scan above that your son has trouble reading - but do check that he has reading stamina. That is something that does need to be fixed while they're young. If you find a problem you'll need a behavioural optometrist or someone who can give him vision therapy. The eyes are controlled by muscles so it makes sense that there will be issues in that area when a child has dyspraxia. I'm very cross that I had to find that out for myself.

Unlike dyslexia where there is loads of research (and funding!) dyspraxia is definitely much lower profile. Because dyspraxics can read it doesn't seem to matter as much to educators but it does hamper them in myriad ways.

I'll try and drop into this site again in a week or two in case you have any questions and good luck.

Thank you for the suggestions. I am still trying to get the PCP to write a referral for the physical therapy assessment. Her assistant said we needed a statement from the neuropsychologist that we had to wait over four months to see but she is apparently too busy. We are supposed to wait 30 days to get the report and then take it to the PCP. Our insurance is through the military and it is all we could afford. We have had to jump through a lot of hoops to get anything. It is very frustrating. When I get the neuropsychologist's report I will ask the PCP about a referral for a chiropractor and a different developmental optometrist. The optometrist my son saw only tested him for about 15 minutes and I think he needs more thorough testing.

I was really surprised and disappointed that the neuropsychologist couldn't give us any more information than she did on dyspraxia. Maybe it is because there hasn't been as much research done on it.

I do think my son's vestibular issues improved after the six sessions of OT that he got before our insurance stopped paying for it. Insurance wouldn't pay because the school should pay for it but the school wouldn't because my son is homeschooled and it doesn't matter that the principal and teachers at the school told us to homeschool.

My son used to fall every time he had to do a dance move that required spinning around. The OT recommended a lot of spinning so we used a tire swing at home. He doesn't fall any more, but learning those dance routines for musical theater will probably always be more of a problem for him than other kids because of the dyspraxia. I think he will go back to musical theater even with the dancing requirement because the other kids really like him and miss him. He took a break and didn't do the last show because of the doctor appointments and other things that were going on in his life. One of their performances was scheduled on the same day my son's piano recital is scheduled and I didn't want him to miss that. He has worked really hard on a very challenging song that he found on the internet and wanted to learn to play. People who hear him play will most likely not realize that he has dyspraxia and will think he can't possibly have it when they see hear him play. They won't know how much effort went into being able to play that song.

The special ed director at the school who would never call us back to set up an IEP meeting when we asked for it years ago still avoids my husband and me, but yesterday my son and I stood in line behind him at a concession stand. His son who is a few years older and in Boy Scouts asked my son if he was going to stay in scouts. My son said no, that he thought it was boring and he was tired of it and he was tired of people trying to make him do something he had no interest in. I said we were still trying to work out the camping and hiking issues and I would really like for him to stay in it, but my son said there was no way he was going back. I know the boy's dad, the special ed director, heard me when I told my son I wanted him to do something with other kids because he is still a kid. Having dyspraxia has made it much more difficult to find activities for him to do with other kids in our small town and the school wouldn't even allow him to play on the playground during school hours and see the friends he made in kindergarten. Scouts was the only thing he was in where he saw kids from the public school.

My son's proprioceptive issues are still very much there and I need to find ways to work on those.

In my experience it is par for the course that it takes a few calls to get this kind of stuff resolved. That's just how it works. Perhaps it would help to remind yourself that there are many, many parents of disabled kids who have been in much more difficult situations but have found a way to navigate the system. Skip the back story on the phone. Be polite and ask for help and repeat and repeat. If they said you'd get a report in 30 days be prepared to check on that and to make it clear that you are in a holding spot stuck until you can get a PT referral. It has been my experience that nearly always there is a nice secretary who cares and will help if you hit the right combination of sweet and pitiful.

If his pediatrician hasn't seen him for balance problems he/she should before they do the referral anyway.