Friday, April 27, 2007

Thanks for Autism Awareness month

To the people and parents living with autism, thank you for the gifts you've given me and my son!

My son and I don't have autism. But we're part of the special community lovingly called special needs. Your battles have give me several gifts. And for Autism Awareness month, I wanted to thank you and all those who have fought alongside me.

1. Thank you for showing the world that just because you move or act differently from most of the world, you are still a human being with intelligence and feelings.

I have a movement disorder. When I was a young child, I was diagnosed as mentally retarded by top neurologists. My parents knew otherwise. Top neurologists told them "You're just overachievers who can't accept your child as she is." Ironically my mom grew up with a sister who had Down Syndrome. So she knew a face of mental retardation. And gazing into my eyes, she knew that I was smart and told me so.

At school, kids regularly called me "stupid" and "retard" and "spastic". Only two teachers told me I was smart. I knew I was smart, but I also knew I perceived the world differently. It was not until I was 16 that a neurologist said "Of course you're intelligent. You have a movement disorder (a new exciting field at the time)." It wasn't until high school that two kids told me I was smart and treated me that way. My dad just said "Wait until college." Finally in college, everyone treated me as intelligent. It was a novel experience.

But it's a different world for my son. Lying in the NICU, extremely sick, I knew my son was intelligent and warm. He made a real effort to gaze into my eyes, though I could tell he was a huge effort for him to focus through the extreme pain. The day he was born, his nurse said "He's so engaging. He's a smart one." From that day, various nurses, doctors and therapists have all said similar things. He has multiple delays including speech, gross motor and fine motor.

He has come a long way, but no, he does not move or talk like a typical child. He also wears a bright red wrist brace and his left arm usually hangs stiff at an awkward angle. But he lives in a different world than I did. I'm amazed by my son's confidence and ability to engage people. Yesterday in the park, he sat with two boys prolly 8 and 10 and played in the sand right next to them. Everyone seemed comfortable. That was something I never had. Thank you boys, and thank you parents of those boys. And thanks to all those who worked so hard to change the world to make this possible.

2. Thank you for teaching me and the rest of the world how to better talk about disabilities. Thanks for standing up loud and proud. My parents came from the old school where we didn't talk about my disability. My parents still don't use that word. They call it my "shake" (I don't shake). I know it comes from a place of love. A place where admitting disability means shame. A place where they want me to live a normal a life as possible. I knew this and I never told my parents about the teasing. It was a pain I kept to myself. And I have greatly exceeded the doctors' predictions, so my parents did many things right. I know if they were parenting today, they would do things differently. They treat my son differently. We live in a different world.

3. Thank for pointing out that there is both joy and pain in having a child with life-long disabilities. You'd think that I'd have an easier time of it having an unrelated disability. But I struggle sometimes to tell the truth. I struggle because like my parents, I want so much for folks to see the joy, the intelligence, the incredible resilience of my son. He has taught me so much. But he also has his challenges. I want to say like any other child, because every child has challenges. But his challenges loom larger and are more serious than most children.

4. Thank you for sharing. Thanks to you, I have learned so many things about myself and my son. I have learned about a lot different resources in Silicon Valley. Thanks to you, my son has lots of therapy that has drastically improved his life. I take therapeutic riding which has improved my balance and wrist movement. I'm also on the waiting list for a service dog. I have learned about the world of sensory issues which many kids on the autism spectrum deal with as well as my son and me.

5. Thank you for the gift of hope and showing me a path to greater freedom. I've had hope for my son since the day he was born. But before I met you, I thought I was the way I was. I could not change in my late thirties. My wrists were degenerating every day. I kept spraining my ankle every year.

6. Thanks for teaching me a whole new vocabulary and different ways of perceiving the world. I learned these words for my son, but they have actually helped me a lot more. Thanks to you, I've been able to use the right words to talk about my issues. Before I stumbled around literally and figuratively and therapists said "We can't help you." Now they offer me exercises and suggestions. I have noticed a small difference. I jerk a little less. I hurt myself less by thwacking my hand on things. I stumble less. I have not fallen down in a month. It's a start to a long journey. I'm so grateful that I know I can change. And I'm still learning about myself. Thank you so much.

Crossposted to Silicon Valley Moms Blog


Sue said...

Thank you for capturing how so many of us feel -- so many of us are navigating this journey. Love your blog.

mcewen said...

Gosh I'm glad you wrote about the cross post - I thought I was losing my marbles for a moment there.
Yes, great post. Thank you from 'mine' and everyone elses.
Best wishes