When my son was about seven and had read about genetics, he wanted to know why he had the differences. He asked me if it was because of a genetic mutation. He was very aware that most of the people in his family were athletic, probably because that is all the family talked about at family dinners at Christmas,Thanksgiving, etc. My husband played football in the army and he could run faster than most people. Physically, my son looked more like his dad than me, tall with long legs, but his legs lacked the strength that his dad had, as well as the coordination. My son wanted to know why and I tried to help him find out why but we get our medical care at a military facility because my husband is retired from the military and that is all we could afford. My son had a new pediatrician every couple of years, but none of them thought his symptoms were severe enough to order an MRI even though I kept asking if it could possibly be mild CP. My son did get to see a developmental pediatrician at age 7 and again they seemed more interested in his giftedness than his physical differences. The educational psychiatrist who tested him at that time said he made a 99.7 on his reading on the WIAT and 99.something on math but he thought my son could have kept going if he didn't have the fatigue issues. He told us that based on those scores he estimated that his IQ would be 140 something but he would have to be tested over more than one session to get an accurate score. We couldn't afford testing and this was all our insurance would pay for so we had to be satisfied with that. An OT also tested him said he could use therapy but our insurance would not pay for it at that time. It did not pay for sensory integration therapy. We were told to get the book the Out of Sync Child Has Fun and that was all the help we got.

Every time he got a new pediatrician we tried again to get referrals and at about age 9 my son saw the developmental pediatrician again and we somehow got approved for six weeks of occupational therapy. The OT did not work with him on handwriting, but had him doing things to improve his proprioceptive and vestibular issues. We got six weeks of OT and a suggestion for him to use a tire swing. My husband put up a tire swing in the yard and my son used our living room as an obstacle course. He used games like Dance, Dance Revolution and Guitar Hero and we noticed that his timing got better when he danced in musical theater. We did the best we could with what we had. When two teachers who knew of his difficulties saw him perform as Mr. Mayor when his group did Seussical the Musical last summer, they noticed that his timing and dancing were so much better. One was a special ed teacher who is the mother of two of my son's gifted friends. She has known him since he was five. He used to spend the night over at her house, so she was more aware of his differences than most people and she could see a big improvement in his abilities. He started singing solos, which is required for lead roles in musical theater. For some reason he thought he couldn't sing very well and wouldn't sing a solo but he loved singing with the chorus and one of the moms in the group heard him sing and convinced him to try and he found he could sing well by himself. This was a big boost to his confidence. I don't think anyone would guess that he has a disability when he is on stage. The director/choreographer does not have him lift the girls like she has the other boys doing, she allows this small accommodation for his disability. He does not look like he has dyspraxia when he is performing. He would not get a lead role if he could not do the job. What most people don't see is that he does not have the endurance other kids have, his feet hurt really bad after about an hour of dancing practice, he gets migraines and misses rehearsals, but because he has a gifted memory, he can compensate for a lot of this.

The last time he got a new pediatrician we asked to see the developmental pediatrician again but the waiting list was about four months long. We were told he should see a neuropsychologist because the wait was only two months, but he would have to be tested all in one day even though we told them the educational psychologist had told us he needed to be tested over more than one session because of fatigue issues. We were told it had to be done all in one all day long session. We took what we could get. My son had not slept well the night before the test and had an upset stomach, we were a few minutes late and he knew his dad didn't like to be late and he had anxiety about the test. When he was seven he did not have any anxiety whatsoever about testing. We had waited for months for the testing and he said he just wanted to get it over with. We didn't tell him it would be all day. When he got his first break he told me he was getting a headache. I could see it in his eyes. I gave him Tylenol not realizing that it didn't help much with this type of headache and he went back for more testing. It was a mistake, but we got confirmation of the high verbal IQ and the dysgraphia on paper so he could get accommodations for the disability if he needs them and I still think he would need accommodations for any kind of fill in the bubble test. My husband and I watched him with a Bamboo Pen and Touch tablet. The weakness in his hands still shows up after about five minutes, yet he still managed to do a lot of writing on a three page test several weeks ago legibly enough that he made a good grade, and even though he was sick with a cold. It is easier to see the cursor wobbling on the screen when he holds the pen than it is to notice his hands shaking. The muscle control problem is still there, but is not noticeable to most people. He says this is why it is hard for him to draw a straight line. It is why he had more trouble coloring in the lines. It has nothing to do with intelligence or his ability to learn, yet teachers think kids like him should be held back to practice coloring and tests require coloring in little bubbles and it just doesn't make much sense to me, but then I am probably not gifted. Maybe I only made straight A's because I could color in the lines.

Maybe his ability to compensate was the reason we couldn't get therapy. I don't know, but I would like to know. I would hate to see another family go through this.

The neurologist is the first doctor that really tried to answer our questions so I had pages of questions typed out for him. He asked me why I couldn't ask some of the other doctors and I told him it was because they didn't have the time or wouldn't take the time to answer our questions and like my son once said would only give us cliche advice and ignore the differences that we kept asking about.

I don't think his headaches are related to this "close to being a chiari thing" because so many people in my family get these headaches and many of them were athletic when they were younger. Nobody in my family has hypotonia. My husband had a large family and none of them has hypotonia and they were all athletic and very intelligent. I did find others on the internet who were close to having a chiari but like my son, only had a few mild symptoms. These people had also ruled out all other possible causes.

I think it bothered my son that some people thought he didn't have a disability and that he was just lazy when he couldn't keep up with other kids physically. He has proof now that there is a difference.

Just curious, have you ever tested your math ability on a timed math test with and without the migraine headaches? I tried it a few times and although I can still do math with a headache, the headaches slow me down and I make more dumb mistakes that I don't make when I am headache free. My sister who also gets the headaches would not try it.