A few days ago, Suzanne Wright of Autism Speaks wrote Autism Speaks to Washington-A Call for Action (check the link and read it if you haven't, I'll wait *wink*). Now that I've read it and have read some responses, I feel like I have some responses of my own that I should write.
My initial knee-jerk reaction was not so chipper. I felt like a lot of the responders, offended and sad that this is the way that Autism Speaks chose to speak about our kids, and jumping up and down and saying "that's not our autism!". My son is a happy boy who makes me smile everyday. Makes me laugh constantly. Makes me happy to travel down this road together on his journey with autism. BUT, then I had a light-bulb moment after reading a post by Autism Daddy (one of my favorite blogs). He had a different point of view.
So now, after reading some things and taking time to actually think on the matter, I actually agree with what Suzanne Wright said in her post. No eye-rolling, tomato throwing, or booing yet y'all, just hear me out for a minute.
This is not our autism now, but is certainly was our autism in the beginning.
We had a little boy we couldn't reach. We went through sleepless years. We were on waiting list after waiting list. We spent hours coping with meltdowns that we didn't understand the reason for. We went through a time where I was terrified of taking him out in public anywhere for fear that he would get away from me or fear of a major melt-down and screaming fit. We had to use a leash when we went out in public. We had to basically tie him into his car seat. We put huge heavy-duty locks on the doors and alarms on the doors because we went through an elopement episode that was scary as hell, and we made a locking pantry cabinet, and we locked the refrigerator with a bike chain. We cannot afford to go to a DAN doctor because it would be an out-of-pocket expense, not to mention the travel expenses to get there, and our insurance won't cover most of his therapy outside of school. And JB just mastered the potty this summer--at 7 years old! That means I went though a good 4 extra years of poop!
And lets not forget, that for a while there, I was all alone with this. Just me, JB, and baby (at the time) Jenna. I am also divorced. Happily re-married now (and damn lucky for it, I know), but divorced none the less. So yes, that is also something that Suzanne Wright mentioned in her post. Statistics on the divorce rate of parents with a child with autism are staggering. Its not pretty, but it is the truth.
Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.
And as I have mentioned before, the world in 10, 15, and 20 years from now scares the hell out of me because of all of our kids that currently have autism. What happens to a society where 1 out of 50 (it will be more by the with the way the numbers are going up) people can't function on their own in society? Can't cross the street safely by themselves, make a PB&J, or communicate their needs to others??
Yes, Suzanne Wright, this was our autism.
Fast-forward to now... Yes, we still have our days from hell. Yes, we still have the locks and alarms on the doors, and the locks on the food. JB is still not speaking. So yes, we still have days where that is our autism. But we have a child that we are starting to reach, who is engaging with us more and more every day. Who is generally a happy and healthy kid. And that gives me hope and it has brought me back to life and out of just existing. BUT, Ms. Wright was trying to make a point to make lawmakers and others--to allow them to see the real and very often ugly side of autism. The despair and the hardships that are the truth for many families who feel like they don't have a voice because, for the most part, what people see in the media about autism is the feel-good stories. The stories of recovery, the stories of some awesome kiddos overcoming the odds of autism and succeeding. And we do need to see those stories. BUT, we don't see the other side in the media. This is a real side of autism that needs to be seen, because those who live with this kind of autism are those who need the most help and support.
Hugs to all of my fellow autism parents!
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