I have had this idea running, circling, evading my grasp for a while now. Every time I think I have “it”, I began to write and then I realize that the slippery little thought escaped once again.
I still haven’t fully caught it. But I think the time for letting it stew is well past. In the video the autism alliance made, I say, “I cried when we got the diagnosis. Hearing that your child has autism? That’s not something any parent wants to hear because you just know that things are going to be harder for your child.” I still stand by that statement. I don’t feel that I want to “beat” or “crush” or “kill” or “cure” autism. Autism is a part of my daughter. Everything she sees, everything she does, everything she is, is experienced through the lens of autism. I feel that it’s much the same as my one aunt, who has faith in God so strong that just being around her makes a person feel that they have strong faith, too. Everything my aunt experiences, everything she is, is viewed though the lens of her unshakable faith. Of course, faith is a choice, and autism is something you are born with (in my belief). Still, without her faith, my aunt would not be the aunt I know and love. Without autism, my daughter would not be the girl know and love.
I read, and hear comments from mothers and fathers that they would remove, cure, kill the autism in their child if they could. They say they hate autism but love their child. Often times, those in the autism world that think like I do condemn these mothers and fathers. I think what these parents really need is compassion. I think that perhaps they have experienced the case of “autism making life harder for their child”. I think that it is really society that is the enemy these parents need to fight. We, all of us, need to work together to educate society about autism.
We have been so blessed in our experiences with the public. Boogie has an awesome dentist, who listened as we educated her about how to handle Boogie. We have found doctors, teachers, babysitters, waitresses, cable guys, who have listened and then smiled easily at Boogie and have worked to create that positive interaction. We live in a smaller community, but we spend a lot of time in the larger cities surrounding where we are. When I first decided to join a gym in order to swim for exercise, I really didn’t know what I would do with Boogie. I took her with me, and just let her splash in the pool while I swam laps. Soon, she was having little conversations with other people who were swimmimg. And then I decided I wanted to take an actual water aerobics class. So I met with the girl who runs the child care center and who teaches the kid fit class. I talked about Boogie. I educated them on her behaviors, and how to respond. She has now been going three times a week for an hour. Boogie doesn’t love it, but she goes without complaint, and doesn’t have meltdowns while there.
I believe a lot of our positive experiences are because Mr. Boogie and I are willing to open up to people, to explain what Boogie needs. Because we are willing to educate people, they are willing to try. That’s not to say that we haven’t had bad experiences. I can vividly remember a time when I avoided taking Boogie anywhere. I didn’t know what she needed, yet, to be able to go out and handle a trip to the store. Melt-down after meltdown would occur, and from the outside, it could look very much like a toddler’s terrible tantrum. I couldn’t stand all the
rude, nosy, stuck-up “helpful” people who would approach with their suggestions. But, I was also unwilling to stand up and educate these people.
I wonder how different the parents who hate autism would feel, if the public and people around them were educated. If they didn’t have to be afraid of the reactions they would get at the grocery store, or the waterpark. I wonder how different they would feel if people were able to show them compassion.
This is why we need to educate, and explain. This is why we need to stand up. Not just because we should be standing up for our kids, but because others in the autism community desperately need understanding.