My husband and I keep telling our son that "we will get through this" and my son said "but the onus is on me." So the brace now has a name--Onus.
I forgot to mention that the day he first saw the brace was the final day of rehearsal and he missed all but the last hour of the rehearsal. He had to learn a new dance that had just been choreographed and the others had been practicing it for hours. This kind of thing is difficult for someone with motor dyspraxia but he was somehow able to focus enough to get through it even though he had just found out that his life was going to become even more difficult than he had imagined. He also made it through the New Years Even performance in front of a crowd of strangers by faking the parts of the dance he couldn't remember as he danced on the back row. He made it look like he knew what he was doing. He loves doing these shows, but I don't know how he will do it next year in a brace that makes it impossible for him to bend down and touch his toes. I think the show at the state fair outside in the heat would also be very difficult even if he didn't dance because the brace makes him uncomfortably hot even when everyone else around him is cold.
He is only 11 years old and his only friends are in this group. He had worked hard on improving his coordination and the dance teacher/new musical theater director said she had noticed recently that he was better in everything...timing, balance, learning the dances, everything. He will not be able to do some of the things I was having him do at home. How are we supposed to continue to work on the motor dyspraxia, muscle weakness, fatigue and endurance issues now?
What about academics? Will my verbally gifted child continue to learn so easily on his own? When he is in pain from wearing the brace he doesn't even want me to read to him. I am having him do math before he wears the brace so he can concentrate on that but he will at some point have to wear the brace all day. How would I even find an OT or PT experienced in helping a child with all of these difficulties. Even if I could find someone, how can I afford the co-pays and continue to buy materials for homeschooling? We have to live within our means and not take on any new debt because my husband will retire in three years.
What about college? So many people, including the first grade teacher who told me I would have to homeschool my son, said he would be able to get academic scholarships. I don't think any of these people realize that he is twice exceptional and what that means. I worry that dysgraphia and fatigue issues will make it more difficult for him when he takes the ACT or SAT.
My son will need a college degree so he can get a good job in the future. Because of the physical disabilities he will not be able to do a job requiring a lot of physical labor.
