Gifted Issues Discussion homepage Forums Twice Exceptional Doing Well Despite Disabilities

My 12-year-old son has several hidden disabilities--migraines, dyspraxia, dysgraphia, hypotonia, and scoliosis. He used to have mild sensory issues, like problems with clothing tags and socks. Last night his musical theater group performed the song Edgar Allan Poe from the musical Snoopy at a talent competition. There were a lot of very talented people performing at that competition. Five of the singers I listened to at the competition sounded to me like they could easily make it to Hollywood if they ever tried out for American Idol.

My son's musical theater group had practiced really hard the night before the competition, with last minute changes to the choreography and lots of things to remember. Three hour rehearsals are hard for my son because of the hypotonia and low endurance. He had to step up on a box during the song probably 20 times as they went over it again and again. I didn't realize how hard this would be on his knee and legs. He didn't ask to take breaks other than the quick trips to the water fountain that the director gave all the other kids. He didn't have a headache. His endurance seemed better than night than it usually is. Everything went so well.

When he woke up the morning of the performance, he could barely walk. His knee was really sore and he had one more rehearsal before the performance that evening. He was really worried that he would let the other kids in group down if he couldn't pull it together and do his part well, so he made it to the last hour of the last rehearsal. He forgot to sing some of his lines as he looked at the box he was supposed to step up on because he was worried about the pain, but he he did get up on the box, once the pain medication finally started working. He didn't have any problems the rest of the rehearsal, but he was still worried that he might mess up and it would ruin the rest of the group's chances of winning.

When it came time for him to perform, he didn't seem to be in any pain whatsoever. He was Linus. His timing, his singing, his acting, everything seemed perfect. He got up and down from the box with such confidence. He and the other kids in the group did so well that they won first place.

It still seems kind of funny to me that the neuropsychologist that tested my son in one all day session at age 11, when he was getting a migraine, when he has always had fatigue and endurance issues, said his verbal IQ was in the gifted range but his "performance" score was spiky so she diagnosed him with dyspraxia. As we were leaving her office she made a comment, something like yes, he has a high verbal IQ, but I wonder which IQ score is the best indicator of his potential, as if the lower performance score could really cause some problems. I am still trying to figure out what kind of problems his spiky "performance" IQ is supposed to cause. How could he possibly have a motor planning disorder and remember last minute changes well enough to help his group win first prize?

Loir H - congratulations to your son for a job well done! He must be soaring, and you must be too.

I have a son with many learning disabilities and a profile that is extremely spiky - verbal in the gifted range, processing speed border-line. I chose to believe that he cannot be defined by his IQ in any manner. Clearly he is smart, but clearly there are cognitive challenges that get in the way of production. But, what the neuro-psychological testing does not measure is "heart", work ethic, tolerance for frustration, social skills, special talents.

In my opinion (for what it is worth), none of us can be defined by our test results. Success can be measured in so many ways. Certain talents and personal attributes are difficult to measure. There are so many aspects to intelligence - and the WISC and other tests do not tap into these.

So - should your child be limited by his low performance scores on an IQ test? Based on what you described - NO. Will his difficulties come in to play and sometimes lower his out put? probably sometimes. But in my opinion, this does not mean you should ever lower your hopes, dreams and expectations. Better to be there to help him manage, compensate and to support him when his issues create a barrier. But never "expect" low potential.

What kinds of issues could low performance cause? For my child it means that it takes him longer to complete tasks. Sometimes it zaps his energy. Sometimes it causes confusions - for concepts that are well within his reach. But the key word is sometimes. And since he is able to handle frustration and work like a dog, he is usually able to overcome. I'd take him as a top draft pick for my team anytime - despite his challenges.

Seems you can say the same about your son. Again, thanks for sharing the success story. It is inspirational.

Amen. Defining what a person can do based on disability is an incredibly limited and confining approach. I think we can all think of examples (Helen Keller, Thomas Edison, Steven Hawking, etc. etc. etc.) where it would have been a huge mistake to predict a person's success focusing on their challenges. Few things in life involve using just a single skill area. People can be amazingly resilient and capable of finding ways to use their strengths to compensate for their weaknesses. While it certainly makes sense to get kids needed help to cope with weak areas, sometimes the biggest help we can give is our confidence and willingness to let kids try.

It not my understanding that typically dyspraxia would be diagnosed based on IQ testing. When our son was evaluated for dyspraxia it involved among other things a physical exam by a neurologist lasting more than an hour. As I recall your reason for seeking out this evaluation was in part because you believed your son had dyspraxia, isn't that correct? It may be that part of why he got that diagnosis is that based on parental reports he was having this sort of difficulty and needed therapy so it seemed like the most convenient diagnosis. I would keep in mind these sorts of very soft diagnoses are not made with a blood test or anything so certainly they can always be wrong. I would just take the diagnosis for what it might give him in therapies and try not to feel confined or limited by it.

I do think it was probably a diagnosis of convenience, but that is the label he is stuck with for now. For years we couldn't get referrals through his PCP at the military base and we were later told by his current doctor it was because there wasn't any record of any disability. They had to see some kind of diagnosis to refer my son for therapy. When my son was 6, my husband managed to talk the doctor into referring my son to a developmental pediatrician. That doctor would not put a diagnosis on paper but thought it might be dyspraxia. She said he definitely still had hypotonia. The developmental pediatrician and the occupational therapist that worked with her both said he had sensory integration difficulties (vestibular and proprioceptive) but our insurance didn't pay for sensory integration therapy. She told me to read a book "The Out of Sync Child Has Fun" and work with him at home and that is what I did. The month he turned 7 he was tested by the educational psychologist and he tested at a 4th grade level in math but the psychologist noticed that he seemed very tired and he thought my son could have gone higher if he could have done the testing over more than one session. His reading level was even higher than the math but again, the fatigue issues were a problem and his eyes got tired right along with the rest of him. Where was the evidence then that he would have a lower performance IQ. I think if they could have started the test at a higher level my son could have gone further. It looks to me like the fatigue and endurance issues which are made worse now by migraine headaches and a very uncomfortable scoliosis brace are the only learning disabilities he has. When he is well rested and not in pain there is absolutely no evidence of any kind of learning disability. His memory is excellent, both short term and long term. It was his ability to do physical things that was sometimes a problem because of the low muscle tone.

My son saw a neurosurgeon last week who reviewed the MRIs and he wouldn't tell us if he thought the "almost chiari" thing could have been the cause of the hypotonia and headaches and if the forceps delivery might also have had something to do with all of this. All he would tell us was that he didn't need surgery for it and that he thought we were doing all the right things with him because he was doing so well. I asked him several different ways trying to get more information. I told him I had read a lot about neuroplasticity and that my son was doing so well and not showing any symptoms of dyspraxia except for slow handwriting and mild dysgraphia but I just wanted to know why my son's endurance and fatigue issues never improved and why he developed scoliosis when no one else in the family had it. He kept repeating "he doesn't need surgery" as if that was all he was required to say so I was again, left with more questions than answers and for diagnosis we get the same old "TBD" which I think means to be determined and a referral for more testing--this time an MRI of my son's spine. All of these tests are causing so much anxiety and taking up so much of our time but we have to rule out a few more scary things before we can stop. I went online to see what they might be wanting to rule out and read about some really scary things that could require risky surgery on his spine. I am trying really hard to focus on other things, like the fact that he seems to be enjoying his writing composition class. Yesterday, the class was doing peer review of the 5 paragraph essays they had written. My son read his essay, and he always sounds like an actor when he reads and when he writes he usually includes something funny, and one of the girls in the class started clapping. I think that was a nice little self esteem booster.

That's great news! It is always better to avoid surgery if you can.


Everything I've read suggests that most scoliosis is idopathic. So most people will not have other people in the family with scoliosis.

Hypotonia is a risk factor for scoliosis. That's part of why kids with hypotonia would typically get strengthening exercises through PT and will be screened for scoliosis more often.

And, again fatigue and lack of endurance go with hypotonia. I don't think a neurosurgeon is at all the right specialist to see to better understand hypotonia. It isn't what they do.


What sorts of tests are so time consuming? The MRI should not take more than a morning or afternoon max.


I strongly urge you not to Google. It isn't going to help. They are doing test because it is required to rule stuff out. As I posted before your chance of getting a firm diagnosis to explain nonprogressive hypotonia in a twelve year old is very low. I think your best bet would be to focus on the ways he's made progress and will continue to do so. There are a lot of kids who never get a diagnosis and that includes not just mildly affected kids like your son but many who have really significant and scary stuff going on.

Wow. Thanks for the post Lori. Your son is such an inspiration. Bravo to him and his cast for winning first place. You have to be so proud of him.