Disabilities

 

I think having a child with disabilities is difficult in so many ways.

The first is realizing and acknowledging that there is, or are, disabilities. Pretending they are not there, or that they can be subjugated by being pretty enough, or smart enough, or whatever, will not work.

Chances are pretty good that child will have some form of this disability for life and a parent's job is to teach them the best way to negotiate the world with it.

It is hard for the child, but it is also hard for the parents and any siblings. A lot of attention gets diverted to the one with the obvious problems and it's not always easy for siblings to respond in grown up, or even appropriate ways. They get asked to do and give up a lot in order to help their disabled sibling no matter how hard parents try to shoulder the bigger load.

The whole family learns to center around the one who has difficulties. In our home, homework took hours every night. There was endless repetition and experimentation trying to find what worked and what didn't. Even extracurricular activities had to be figured out.  Soccer was a gross motor sport that worked. Tennis was an eye hand coordination sport that did not.  Piano, taught one on one, helped with that coordination.

It never got easier. There was always a new challenge. Learning to drive, or should she even drive? Getting a job, how much could she handle and so forth and so on. There was school and there were tutors, but above all it took hours every day for everyone in the family to make it work -- even while they were working and going to school themselves.

Then the day comes when you have to step back and see if it worked and the horrible truth is that even this will take years of very difficult decisions before, or even if, that child can make it on his or her own.

For us it all jelled about forty.  Our daughter had a job she could handle and keep, an apartment she could afford and take care of and even met a man who was the perfect match for her. She has everything a person without disabilities might strive for. She just has to work twice as hard to keep it.

I am so proud of her. I am also proud of her siblings. They are truly empathetic, caring people, who learned a lot from this sister of theirs.  It wasn't easy. We all had to learn to give and take, to say no when we wanted to say yes and hang on to dreams that were never promised.