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While hopefully things will get easier for your son once he doesn't have his scoliosis brace, the reality remains that ALL kids, disabled or not, need to learn to be able to be independent. That involves skills such as: being self aware enough to identify your own limits, learning to ask for help, letting other people know your needs, handling frustration, persevering in the face of failure, handling it when other people make mistakes, etc. ALL kids face challenges they will need to be able to handle and that comes through experience. You can't skip that step.

I think you are really overthinking the diagnosis part. We've had zero problem with simply using a more general description such as "hypotonia" or "muscular disability" or a "condition causing muscular weakness". We follow that up with an explanation of what is needed in that situation. People really don't need to hear your life story and I really can't think of a single daily living situation where that sort of explanation has not been sufficient. Most people in the world are good and want to help and never once with these sorts of explanations has our child been told he just needs to exercise. Rather than trying to make it complicated, I would focus on empowering your son to know how to explain clearly what he needs.

Even if you somehow could find the exact perfect diagnosis that isn't going to absolve him from the responsibility to communicate his needs to other people. Say we pick out an illness that has a name that is recognizable to most people - let's say muscular dystrophy - that still doesn't tell us that much about what a specific individual needs. He would still need to be able to communicate his specific limits such as I need to use a keyboard or I need to take the elevator.

In college, students may receive approval for accommodations based on disabilities, but it is still the student's responsibility to be communicate to their professor what they need. I understand it comes from a place of trying to protect him but I believe you are doing your son a disservice to deny him the opportunity now to start to learn to be comfortable with communicating to other people what he needs. I would get out of the room and let him work it out. Probably he will stretch himself to do some things that are hard for him. Very likely he will do things you would not have guessed he was capable of. And, sometimes he'll find he needs to ask the teacher for help. Maybe he'll need to go out in the hall and find you and ask you to adjust his brace and that's okay. Through all of that he can have the pride that he's able to take on levels of independence appropriate for his age.

Is the real concern about the lack of a specific diagnosis that people don't take it seriously? If that's part of it I'd say that is all the more reason for you to step out of the picture. If people see you not having an appropriate level of distance from your child it sends the message you are a helicopter parent which is automatically going to predispose people to thinking you are exaggerating or creating problems where they don't exist.

You can dwell in the place of feeling sorry for your son but that isn't productive. Yes, strengthening comes more slowly. That's part of it, but with work it can happen. It likely will never be the case that his tone will normalize or he'll be a super athlete but he doesn't need that to have a good life. Strengthening is vital for health and for living a good life for people with hypotonia. Better core strength helps cut back on fatigue (which may also help cut back on the migraines as fatigue is a common trigger). Strengthening also offers some protection against the real problem of hypotonic people wearing out joints and muscles. It also offers some spinal protection because as you discovered low tone can be problematic in this area too. Again, it isn't to say it is all easy, it isn't, but it can be done!