I went to a great autism meeting the other day, with the Autism Society of LA, and met tons of impressive people (yes they will be on my special ed show, either here or here, it depends if I do only video, not sure…).
Anyway there were awesome speakers and yes I know I overuse that word, but they were. Why? Because California is the home of the Disability Rights Movement, baby! So I met some great advocates and just fell in love with the group. Except…there weren’t enough Latinos. I wasn’t surprised and of course will be working on THAT in addition to my millions of other projects and clients. And my high needs son.
One of my favorite part of listening the speakers was a man who finally got it right when talking about us parents. He said ” You have to learn to live with a hole in your heart. There is no cure for autism. There is no cure for LIFE! There is only repair and healing in life.”
It reminded me of Rabbi Kushner’s book, “When Bad Things Happen To Good People”. He wrote of the pain of losing his son to a rare disease, and how much he had learned and that there was no meaning behind it. We always look for meaning in things, to give us peace. But the reality is that we get lot of joy out of life and we also get much pain. And to go through life expecting not to feel pain is childish, in fact. Pain is part of life and if you don’t go through it, you aren’t living. Yet I have always had problems with those who envelop themselves in their pain and let it consume them.
Aidan and issues upset me and bring me much pain. However, I laugh a lot and poke fun at it. And I have gotten a lot of flack for it, but 1) I am not a middle-class white parent–meaning I grew up WAY differently, in a working class Mexican-American world and don’t raise my son with kid gloves, autism or not. And 2) personally, I don’t believe disability is because I have sinned, or bad karma, or there’s a higher reason for me having a child with autism.
I know that idea–that there is a reason for it, makes a lot of people feel better, and let me be clear: I find MANY spiritual lessons in raising a child with high needs. But I don’t think there was any rhyme or reason to it. I think disability is naturally occurring and always will be. I just make the best of it and figure out how to make other families able to cope with systemic barriers and the daily hurts. So those who look at me with sympathy or pity should think again because environmental causes, accidents, and old age ALL cause disabilities. No one is immune.
But the idea of living with a HOLE in your heart, and just learning how to do it on a day to day basis, really hit me hard during this speech. I feel that’s what I do and that’s what my ex-husband does. It’s just underneath the surface always, and we are going about our daily lives, our business. It’s a huge hole–much huger than any abuse or childhood trauma or things that have happened to us individually or together. And we just cover it the best we can but it’s always there, ready to spread open in the right company, ready to be stressed with the right event, and we breathe a little differently and take different steps and actions because of this big hole, but we are still here among the crowd.