Speechless

As a mother of a child with a disability, any show that focuses on this experience catches my attention. This is a reason I loved the show Parenthood; it helped the world understand what life is like with someone autistic, and they even covered what it’s like to find out as an adult that you’re autistic. It was very well-done, and I’ve watched it more than once.

Parenthood focused on many families, though, and only one with a child with a disability. Speechless follows only one family. The child isn’t autistic; he has cerebral palsy. The shows covers a variety of topics in the few episodes that it has aired so far, including the guilt family members may feel when they enjoy an activity without the disabled person, like the first time I go to go to a bunch of stores in one day while Buddy was in school, or the time I got to take a nap without worrying about Buddy getting into something, or when I cranked the music up and danced around the house, which I can’t do when Buddy’s home because he can’t handle that much noise. My first response is joy, but then I feel guilty for being glad he’s gone. As was pointed out, I wouldn’t (and haven’t) felt guilty about being able to do something that someone else wouldn’t enjoy. I don’t feel guilty about watching romantic comedies without my husband. I only feel guilty about Buddy, which is understandable, but, as the show points out, not necessary.

The show also covers treating the disabled as though they were more than special and deserved to be treated above and beyond. This attitude is beyond frustrating for me. My goal as a parent of a child with autism is to teach him to get along like he’s NT when he needs to, and the world looks him and says, “Oh, you poor thing, struggling with your disability. Please, take this special treatment that I would never give a fellow NT!” Don’t get me wrong, I’m not complaining about accommodations, which is different. If my child is able to stand in line, or if I’m trying to teach him to stand in line, please don’t push us to the front.

I talk about Disney a lot, but one of the things they do is if your disability means you cannot wait in a long line, they allow you to cut in front. This is great for those that need it, and there’s nothing wrong with using it. But if my son can wait in line, he should. He shouldn’t get special treatment just because someone heard the word “autistic.”

One of the biggest reasons I connect with the show is the mother. Without going into spoilers, the mother is a huge advocate for her son. She doesn’t tolerate anyone looking down on him. If the school her son attends starts hemming and hawing, she marches down there and makes them stop. While she can be over the top, she’s a big inspiration to me. I always feel bad asking for things my son needs, but I’m also shocked at how little people are prepared for him. For example, as stated in a prior post, Buddy started attending a regular school instead of a special needs one. I was in the school one day when the PA system went off, and I nearly flew out of my skin. It was incredibly loud! It was so loud that the voice speaking was warbled. I can only imagine how much it must hurt Buddy’s ears. How is it that this school claims to accommodate special needs children, when this seemingly obvious and simple issue hasn’t been addressed?

I’ve been bothered by it, but after watching Speechless, I realize that I am my son’s voice. He can’t go to the principal and ask for a quieter environment or a regular, unchanging schedule, or advance notice of special issues/days. I can. It’s up to me to step out of my comfort zone and ensure that his needs are met, whether it’s letting me know what is on the menu during “Mystery Lunch Week” so I know if he’ll eat it, or that they decided to switch the art and the music room.

I’m not asking for special treatment. I’m asking that my tax dollars, my investment, be used to invest in my son, and not just park in him in front of various teachers until he leaves.

After watching the first two episodes, I’ve definitely started speaking up more. I insisted that he not be released with the other children unless he has his headphones, as the noise of the other kids, the commotion and confusion, are too much for him to handle and he’s tried to run home before. I’ve had to park right in the pick up lane to jump out and chase him down. I’ve requested his teacher copy his schedule for me so I know what will be happening each day and can give him warning. “Today is Wednesday, so that means you have gardening today!”

His SpEd school had meetings with me four times a year so I knew what was going on and we could adjust as needed. This school meets with me once a year.

Once. A year. At the end of the school year.

Too many parents roll over and assume the schools will raise their children and teach them everything they need to know. They are our children! It’s time for us to act like and advocate for them; nobody else will.

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