It feels like things are only getting harder. My 15-year-old son said it seemed like there was no light at the end of the tunnel for him. As soon as he got off the prescription pain meds he had to take after scoliosis surgery, the almost every day migraines started for both of us. This is not unusual for us at this time of year because our migraines are triggered by weather changes. We also both get restless legs making it more difficult to get enough sleep and we both have Marfan but we don't look like the pictures of people with Marfan that you can find on the internet. We are still dealing with medical anxiety that was worse after finding out that we have this. Sometimes I feel bad about destroying his hopes of going back to mixed martial arts and other activities that he looked forward to doing. It is hard knowing that mild heart issues will prevent him from doing some of the things that he looked forward to doing after he got through with bracing and surgery, but the orthopedic surgeon said he could go back to doing musical theater which includes some dancing. Dancing is good exercise. He will just need to take breaks.

The director of the children's musical theater group begged him to come back because they only have one other teenage boy in the group and they need him. She is willing to work around any difficulty that he has. She told him that all the girls were excited to hear that he might come back.

The problem is that after not being around other kids for the last year and a half because of bracing and surgery, he has developed social anxiety and does not want to do it. When he has anxiety he worries that it will affect his heart. He thinks that if the director has him do less than the others or provides accommodations the kids will see him as "the kid with the disabilities" and he doesn't want that. He wants to keep the fact that he has disabilities hidden. He seems really depressed since we told him that he has to do this because there isn't anything else in our small town for him to do and he needs to be around other kids. He seems more upset about this than he did about having surgery.

He wants to keep the fact that he has disabilities hidden.


I completely understand, Lori. This can be done; it just requires a lot of advance planning-- and the realization that they WON'T stay completely hidden with people who get to know him well.

On the other hand, in discussing this with my own DD, who is pretty comfortable with her disability as part of her identity at this point, what she REALLY wants is a chance to just be {DD} without labels that others may have bizarre misconceptions about. She wants a chance to MAKE an impression, rather than having one already made FOR her with peers.

So keeping the disability in the background initially is the major goal for her. We select activities very carefully on that basis, and in advance, work out accommodations that can be very low key or even invisible. We still get surprised by things sometimes, and she gets "outed." She has to live with that as a possibility. Her safety depends on flexibility there.