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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.