Yesterday, my friend Wendy's oldest daughter got into the Deaf Studies program at Boston University. I've known Skylar her entire life, and I was so proud of her. Skylar has known Max her entire life, and I thought about the influence he's had on her.
Skylar did not know what to make of Max when she was little. This was typical of most kids—they couldn't figure out why someone around their age wasn't talking or acting like they did. But over the years, Skylar came to see that Max was in many ways a child like any other, just one who needed some support. His disabilities were one part of who he was. He had a personality. He had passions. He was cool.
These are things that our entire circle of friends, family and neighbors has come to understand. Sometimes, it just takes one person with disabilities to help people get it. I didn't have that person in my life until I had Max. But Skylar did. More than one—the cantor at her synagogue has a son who's deaf, and Skylar got interested in learning sign language. And now, she's going to school to specialize in it.
I was talking with Wendy as I walked home from work last night, and we chatted about Max and Skylar. Wendy noted that Skylar reads this blog, and has been inspired by how I've advocated for Max. That got me thinking about how it's not just our children who can make an impact on other people. Social media influencers might be a big deal these days, but we parents are the real-life influencers who make people understand that we love our children with disabilities as much as any of our children. We help people see our children's strengths and talents and wonders. We make it clear that our children deserve to be enabled and included in every which way.
You don't need to have a blog or be on Facebook or Instagram to this. The people you know are learning from you all the time. No pressure! You are showing them the way without trying, in ways you've probably never even realized. Maybe not your Aunt Edna who thinks your child is a "brat" or that "he'll get over it" but lots and lots of other people. You are making them see that even if you've struggled with a diagnosis, your child is no tragedy. Your child is your awesome child and you are their no-stopping-them mom or dad. You are enabling them to rethink dated or clichéd perceptions of disability, and see children and adults with disabilities through new eyes.
You never do know whose life you will change. Remember that, Skylar.
As an adult with a disability I hate that fact. It may be empowering to you as a parent of a child with a disability, but I hate it because it normally comes on the heals of something negative happening and I have to stop what I am doing and say my speal based on the event. I do have cp but intellectually I am average. I have to stop and sometimes say hey they are not retarded they have a intellectual disability and saying the R word is just as bad as saying the N word. I have to say I saw you flapping your hand that way I don't think its funny and your the one looking bad not me. I have to say yeah I have cerebral palsy and no I am not in a wheelchair, not everybody who has cp are in one. I have to ask for someone to hold my plate in a buffet style dinner. I have to deal with people over helping me to. Its exhausting So as your advocating more importantly accentuate his strengths for Max you are making one less person who mistreat, judge or forces him to stop life and go into the poster child role and advocate for himself
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