Gifted Issues Discussion homepage Forums Twice Exceptional ltr to IEP team modifying (feedback appreciated!)

Lori, I'll second the recommendation for Efofex - it's great software, and the company provides a free 10-year license to students with disabilities. I think the website is www.efofex.com but don't remember for sure - you should be able to find it by googling efofex.

We're Mac users btw, and our ds uses Efofex. He runs most of the modules under some version of Windows (sorry I can't remember which!), accesses it using Parallels. He does use the module on the Mac side that's available, and another (I think Stat?) just came out in Beta form for Macs which he hasn't had a chance to try yet.

FWIW, he's using the iPad in school this year and he has a nice equation editor on the iPad that he likes just as much as he likes Efofex. I can't remember the name of it either, and the iPad is at school at the moment. If you have an iPad you might try searching in the app store - I think it was relatively easy to find.

polarbear

MON and Zen - wow thanks...I know you directed your posts priniarily to Lori but I worry about what will happen with my DS in a few years as math get more involved and simple scribing and giving oral answers isn't enough or gets in the way of DS really participating and learning the material. These are wonderful ideas.

Lori, I am so glad I found you on here. Like I said before, it seems to me to be really really difficult to find other children like our sons... I know some other kids with hypotonia but it usually part of a something else - ASD or some other disability, and it isn't quite the same. Finding another child who is bright/grifted and just has hypontonia only really affecting fine motor skills and posture seems rare. I am on another board for hyponia specifically but those kids have different issues - gross motor issues, speech issues, etc... and while it's supportive again it isn't quite the same. Finding you and the "Jim" in the link that I linked about assistive technology to help a gifted kid with hypotonia really has made me feel more hopeful

This is how schools and teachers seem to approach my child and I did too - until recently. Pushing him to work despite the pain of his disability thinking that is somehow helping instead of causing way more harm than good. I have been a real pain in the butt to the school lately forcing them to wrap their minds around the fact that is is a permanent disability not going anywhere... and forcing writing is like focing a parapalegic to crawl around instead of use his chair b/c he "can" and we don't want to "enable" [love love love that analogy MON :)]


Yup. It's hard to get to this very realization with this type of disability (I guess b/c of the invisibility of it and it's even more invisible when the child is not only okay cognitively but gifted even) and so so so hard to get others to 'get it' as well.

Oh my Gosh - what morons. (sorry)

Thank you. I will try to get the free trial to try it out.

My son's disability was totally invisible until he was 11 and developed scoliosis which required bracing. His hypotonia was mild and I had no idea that he would be more at risk for scoliosis because of the hypotonia. He could hide the first two braces he wore underneath his clothes but the one he has been wearing for the last year is more painful and makes it harder for him to walk or stand or even sit for long periods. It is too hard to go anywhere so we stay home. The isolation is very difficult. The anxiety and sleep deprivation is very hard. I pray every day that the brace will work and he will be able to stop wearing it. We have an appointment soon.

Lori, I had no idea a child is more at risk for scoliosis because of hypotonia. I wonder how I monitor for this? I am taking him to CHOP neuromuscular clinic first week in December so I will ask them to look at him to make sure he doesn't have scoliosis now, etc. But just wondering what the red flags/signs are? How do we avoid/prevent the scoliosis?

It is more common during the adolescent growth spurt. That is when my son developed scoliosis. My son had always been very slender and there was no evidence of a problem until he went to a routine checkup when he had just turned 11. Nobody in our family had scoliosis as far as we knew, but then nobody else had hypotonia either. Most members of our family were athletic, which made it more difficult to fit in even in his own extended family.

http://www.scoliosisnutty.com/adam-test.php

We were told that there was a good chance he could avoid surgery if he wore the brace the required number of hours. This was after months of the doctor saying lets wait and watch to see if it gets worse. It did. If I could go back in time I would insist on earlier bracing and I would fight my insurance company (government insurance) to pay for a doctor more experienced in pediatric orthopedics. The doctor we were sent to was the only one who would accept the low rate our insurance would pay. It wasn't until it was almost too late that we were allowed to see a pediatric orthopedic surgeon who told us there was still a chance that a different brace would work but it is a more difficult brace to wear. My son had been told by the first scoliosis doctor about how his spine would have to be fused to a metal rod if he did not follow the treatment plan, so my son did exactly as he was told. Even though he was sensitive to clothing tags when he was younger he managed to live in a very uncomfortable brace and give up doing things that other kids get to do for three years and it absolutely makes learning more difficult. It is harder for him to concentrate when he is uncomfortable and can't get enough sleep.

Early treatment with the right brace is so important. It is extremely difficult to see a child go through treatment with the wrong brace and then experience setbacks after doing what he was told to do. Our anxiety level is so high right now.