Gifted Issues Discussion homepage Forums Twice Exceptional Questions to ask the doc

I am working on my list of questions to ask the neuropsychologist when we go back to get the results of my son's tests. I think the test results will be consistent with the developmental pediatrician's diagnosis of dyspraxia because they were still testing him when he was tired and that is when some of his issues are easier to see. I just needs something on paper so that we can get any accommodations he might need like extra time on fill in the bubble tests, etc.

I also want to get her opinion on making him stay in Boy Scouts.

So far, my son says he only has one big question--Why? She said she would talk to him privately and answer his questions.

My biggest question is about creating new neural pathways. I still don't understand how this works. I mean, I know how it is supposed to work, but I am seeing different results than what I would expect. For example, my son has always practiced writing D's correctly. The way I understand it, there should be a clear neural pathway and no roadblocks to writing the D. What I still don't understand is how he still, at age 11, writes letters backwards occasionally and why, even though he has had a lot of practice, he still writes so slowly. I have never understood the inconsistent motor performance. I have spent hours online trying to figure this out. I am so looking forward to finding some answers.

Hi Lori, not sure what other questions to suggest to you but I would say that based on our experience, the information you get back will sort of dictate the questions to ask...if that makes sense. Any preconceived notions you have, no matter how well researched, might be upset by some unexpected results.

I hope your dr. is open to you emailing or calling with questions after your 'final' consultation. I guess if our doctor had not said we could call him later, we'd never have left his office, lol!
...our situation was a bit odd, however, the final 'diagnosis' of the 2nd 'E' in 2E was fairly different than what we anticipated so all the questions we did have sort of went out the window and a bunch of news ones came up.

Has he filled in bubble sheets before? Did he have trouble with it? If he is able to enter data into a cell phone and play the piano I'm surprised he'd have trouble with bubble sheets. A lot of kids who struggle with handwriting can still do fine with bubble sheets. I'd keep in mind with a test like the SAT they are filling out maybe one bubble a minute. That isn't very much.


Can he do things now he didn't used to be able to do? Do you see any progress now versus when he was six years old? If so it is working, it is just maybe not working at the rate you'd like or expect but that doesn't mean it isn't working. I'm not sure any doctor will be able to give you the answer you want to this question because there is a lot that isn't know in general about the brain and that can't be predicted about the development of an individual person. Based on our experience I'd say that it is just impossible to know. Some pathways were laid down easier than would have been predicted. Some were much, much, much harder taking years and years of steady incremental practice. I know that is discouraging but that may be all you get.

I agree the questions are probably dictated by what you hear back. The questions I would suggest:

What specific interventions would have the greatest possibility of helping?

What long term limitations do you expect our child will have in college and as an adult?

I would also talk openly with them about the concerns about anxiety and feeling discouraged and ask if working with a psychologist might be helpful.

I don't know what to ask the dr, but if you want accomodations at school, you're going to need an IEP or a 504 plan. The school might accept your report to create an IEP (if the dyspraxia affects his ability to learn) or they might want to do their own tests. If you just need acoomodations for things like more time to write or filling in bubbles, you might just want a 504 plan. For that, you'll need a diagnosis in writing from the doctor, maybe with suggestions for accomodations.

The neuropsychologist confirmed the motor dyspraxia and said the difficult birth could have caused his issues, but there is no way to prove it. She said at age 11 it is really too late for occupational therapy to do my son any good. There was so much information and I was in shock after hearing "it's too late now for therapy" so I will have to wait for the report that she said she would mail to us to try to make sense of it all. I remember she said something about one of the tests showed he was at a 1% level in his dominant hand (right hand) but average in his left and she had no explanation for this. The scores were all over the place with things that didn't require good visual motor integration being much higher. I remember she said he reads at a 12th grade level, he speaks very well with good pronunciation, seems to know a lot of factual information but would sometimes go off on a tangent when they just wanted him to answer the question and move on. I remembered that after the testing my son told me he said something to the neuropsychologist and her student about reading "Fahrenheit 451" when they asked a question about technology or possible problems with having too much technology, and he mentioned the book "The Jungle" when they asked him about the purpose of the FDA. I am sure they didn't want to hear about any of the history of the FDA but when my son asked me what the test would be like I said I thought they might ask some general knowledge questions and I think he just wanted to show them that he had plenty of general knowledge. The neuropsychologist said she thought this "behavior problem" might be something they could work on if he went back to public school.

It was also a "problem" that he got distracted by a fly in the room during testing. I think this annoyed her. My son told me it kept trying to land on his drink. My son also found the two-way mirrors and people writing down everything he said a little distracting, but he said he did the best he could even when he was really tired in the afternoon after hours of testing when he was starting to get a headache.

I asked the doctor about the handwriting issues and why he would sometimes reverse letters and what causes the inconsistent performance and she said she couldn't say and that maybe it was because he hadn't been taught properly since he wasn't in school and it went downhill from there. I told her he did use Handwriting Without Tears to learn to print but he had been working on cursive only for the last year and hadn't practiced that for a couple of months because it is summer break. She said he was given the option to write in cursive but he wouldn't do it.

I will finally have a diagnosis on paper, so that is something, but I didn't get all the answers I was looking for and I will have to go back to the pediatrician at the base to get a referral for a physical therapy assessment in order to get a statement about the hiking for Boy Scouts. It took over 4 months just to get in to see the neuropsychologist so I have no idea how long this will take.

I still wish I could have him take a class or two at the school like maybe a debate class or literature class but they don't allow that in our state. If the school tested him and saw his handwriting that looks like 3rd grade level I doubt they would let him do anything at a higher grade level and the doctor said unless the school used the "discrepancy model" in deciding on what classes to put him in, he might be put in a lower grade just because of the handwriting difficulties.

My son still says he never wants to go back to our public school and would instead like to try to study for and CLEP out of a college course like history or economics. There is a community college near us and the CLEP tests are multiple choice and it is all done on a computer. I don't think there is a minimum age requirement for this. I am checking now to see if this might be a possibility for him.

Hang in there. I know it is a frustrating process, but really if you get anything from this you've got something. I don't know any parent of a special needs kid who found they got everything they wanted from one visit.

Were they saying it is too late for therapy for sensory integration? Or for all kinds of occupational and physical therapy? Was it that the doctor felt the handwriting problems stemmed as much from lack of appropriate training as from something neurological? Did they feel his muscle tone and strength were normal?

Did they refuse to write a referral for PT? I can't remember does he have an appointment with a neurologist? From your descriptions I think it is likely he would get as much help or more from PT than he would from OT. Improving core strength is huge in helping endurance. Is is possible to call the neuropsych office back to write a referral for a PT evaluation? I understand it takes a long time to get a specialist appointment but I can't imagine it would take months to get in with the pediatrician or with a physical therapist. If he's been seen in the last year and he/she has observed the hypotonia or dyspraxia they may not even need to see him to write the referral. Our pediatrician knows the underlying diagnoses so that sort of thing can be arranged without a visit. However, if the pediatrician hasn't yet examined his ankles though it seems like that would be a good idea.

I too live in an area with no part time access to public schools so I share your frustration with that. In the long run though, I believe for us it has actually worked out better for us because it propelled us to organize co-ops and find tutors and mentors.

I see CLEP as kind of limited. It won't get him opportunities to learn with other people and keep the spark of interest lit. It won't address his challenges with writing. It won't help him learn skills of being successful in a classroom. All it does is get him credit if he goes to the sort of school that accepts CLEP. At his age I see credit as the least important concern. If he's got LDs placing out of several lower level courses simply means he's taking more harder courses at the same time when he gets to university full time which may be difficult.

That isn't to say I'd rule CLEP out entirely but I would recognize it as just one piece of a much bigger picture of homeschooling middle and high school. I'd try to focus more on that big picture and figure out if it is realistic to homeschool or if it would make more sense to take the scores you've got to the school and see what they might offer. Did he get an IQ test - would those results help?

Hi Lori, I wanted to post a response yesterday, but didn't have time.
I'd agree with Dottie on the therapy, seems odd to state it would in no-way be useful at the age of 11 so I would continue to look into it.
(This might seem really out there, but since he is still struggling with writing right-handed, I think it would be good to just ask the doctor or a therapist whether moving to use his left hand more (for writing or in general) would make any sense.)

I think it's interesting that the doctor limited some of her conclusions/interpretations of the testing to 'no idea'. Part of what you are hoping for (paying for) is at least a best guess from the doctor as to what the results mean and what to do going forward, not just the results themselves.

Oh, and flies are *distracting*!! Why would being distracted by a fly on your drink seem like a problem behavior? Ahh!

It sounds like his answers were solid, interesting and on-target. I hope the whole thing was not discouraging to either of you.
I am sure after you get the written report you will be able to make more of it and it is just a beginning step. I especially hope that your son can feel good about the assessment, and that he doesn't worry that he didn't do his best, sounds like circumstances were so-so.

As for a college class here and there while continuing home-schooling, I think it's a great idea if they'll go for it. I have thought about comm. college art classes for our ds, sometime in the future, because I know he gets so very little (zero) from the school art classes.

I think she was saying it was too late for OT to help with the handwriting issues, but I also noticed every time I said something about sensory integration therapy she didn't say anything, but from the look on her face I got the feeling that she doesn't think it works. I know she thought it was strange that the OT my son had six sessions with only worked on his vestibular and proprioceptive issues. I think there were a lot of things the OT wanted to work with him on but time was limited and she had to prioritize. All I know is that my son's piano teacher thought she could tell a difference when he was doing sensory integration therapy and I also felt it was helping, but insurance won't pay for it.

I talked to someone at the base clinic and they said they will write a referral for physical therapy as soon as I get the doctor's written report. I think having the diagnosis on paper will help us finally get the physical therapy he needs. I am hoping they can help him get to a point where walking doesn't make his legs, ankles and feet hurt as much. It is has been so hard getting him to walk longer distances when it hurts. Someone on another message board who has mild CP and some similar issues told me to ask about gait training because my son's feet don't always point straight ahead when he walks. She said it helped her with pain and endurance issues. I am so frustrated that I have had to find information on the internet in order to get help for my son.

I am sure my son does need to improve his core strength. He complains about not having back support when he is at piano lessons and at home when he practices.

I don't think the public school is really an option. I have to find another way to educate my son. I will have to try to find classes for him in a city 30 miles away and I will have to work this around helping my parents. There is a state university about 40 miles away that he could transfer to later on that does accept CLEP for lower level courses. Other homeschoolers have done this instead of having their kids take high school level classes. But it doesn't solve the problem of learning to learn in a group situation and the musical theater class is not a substitute for this. The teacher doesn't allow much talking. I have tried to find discussion groups and the closest ones I have found so far are about a 45 minute drive. I talked to one of my son's friends about starting a book discussion group or history at our house and he said he wouldn't be interested and he didn't think any of his other friends would be either. He also told me that there were no academic clubs at the middle school.
He said at that school you have two choices. You can be bored or you can do sports. My son can't do sports and there are no kids like my son anywhere near us.

Lori, I was thinking about a post Austin made about core body strength and about my GS9's lack of coordination & strength. GS9 is motivated to do some physical training right now, so I got him a book "Pilates for men" yesterday. He has some base measurements for strength through scouts, we'll give this 6 weeks and see if there's any change.
My GS doesn't have as severe symptoms as your DS, but GS is always the last or next to last picked for team sports. After a couple years of swim lessons, then just playing in the water the last 2 years, he has progressed to being an adequate swimmer-- he feels great about that. I'd like to see that kind of growth on land in GS9, too.
Have you ever thought of Pilates or Yoga for your son, and do it at home?

This article may of interest to your son. http://well.blogs.nytimes.com/2009/07/08/how-to-fix-bad-ankles/#comment-348843

Good news that he's going to get physical therapy.

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.