Heartbreaking

Having special needs in the family is exhausting. I suppose any child can be exhausting. Multiple children are exhausting. But special needs just seems to be in a realm of its own. Well, thats how it seems to me.
I have spent the last 5 years making appointments and petitioning to be seen, and getting our names on wait lists that are over a year long. We have seen countless specialists and spent more money than I can count. I read about the newest therapies, regale myself with the success stories. I seek out stories from those that have lived through it, or knew someone that has been through it. I am comforted by their words, their pain, their hurt, their grief and their joys.
I have finally learned to cope with the day to day.
I can smile at people and tell them my child has special needs without feeling my heart crack in half and without my eyes brimming with tears.
I know who to contact when I have questions or concerns. I know the importance of getting on the list, even if we might not be seen until 2010.
I tell myself I can do this and I brace myself for each day with its many many challenges.
I steel myself for the breakdowns and meltdowns if we need to wait in a line or if food is not instantaneous. I try to understand the people that glare at me and my child . I know how he appears. He is throwing a fit because he didn't get instant gratification. He looks " normal", therefore he is a brat. But he isn't. He doesn't understand. He is smart but he doesn't understand.
I don't make excuses for him. Not usually. I just try to keep everything and everyone in check.
What breaks my heart is how few people actually get to see how sweet he can be.

A striking moment for me came with reading the book " Born on a Blue Monday". The author, who is autistic, recounts falling down the stairs as a child. He got up, and although it hurt, it did not occur to him to tell anyone. That description changed my approach. I started giving more words, narrating Oliver's life. You fell down, that hurt, ouch!
I believe it has helped.
I still marvel when he answers a question. He left the dinner table tonight and I asked where he was going.
" Go to pee in the potty".

I love that.
Yet, he still doesn't tell me if he doesn't feel well. He just won't eat dinner then all of a sudden he is throwing up. I'll have had no idea that he didn't feel well.

This morning he got up with a horrible wheezy cough and his voice was rough and raspy. He was so disappointed that I wasn't letting him go to school. I have no way of knowing how he really feels. Does his throat hurt? Does it hurt to breathe?

Its not like having a baby that can't talk. Its different. And it breaks my heart.