When Max gets it into his head that he wants to do something, he won't let up. This doesn't work out so well with things like his plan to move to Orlando, even though he reminds us daily and tries to persuade us by noting that our neighborhood/city/state are "disgusting." But this trait does come in very handy for working around his challenges.
It was sheer determination that lead Max to commando crawl like an army soldier around our home when he was a tot, because his arms and legs weren't yet strong enough for him to crawl on all fours. I was thinking of this yesterday as I watched him at the beanbag toss during his school's annual picnic. Max loves this game, although aiming doesn't come easy to him. No matter. He literally tried dozens of times to get the bean bag into the hole as another parent stood nearby and handed them to him.
Maybe people who don't know Max well would mistake his disability for inability. And for sure, there are things that do not lie within his powers—same as us all. Right now, he's still learning to work around them.
Last night, we had one of our random conversations about cerebral palsy. Max asked why he had to visit the a doctor this week, if he's not sick, and I explained that the neurologist we visit once a year sees a lot of kids and teens with cerebral palsy. At which point Max asked if Sabrina had cerebral palsy or Ben did. "No," I responded. Then he said "I hate cerebral palsy!"
My heart sank, although I didn't know if that was just another flash of teen 'tude, given that likes to say "I hate ___" about various stuff (where we live i.e. not Orlando, vitamins, fireworks, me).
"Why do you hate cerebral palsy, Max?" I asked.
He said, "I don't know."
"Max, a lot of people have cerebral palsy," I said. "It's part of who you are."
[Silence.]
He didn't want to talk about it more, so I filed it under "To be continued," as these conversations always are. At bedtime, we watched videos I'd taken of him at the bean bag toss, and he gave me one of his proud grins.
I hope that as Max matures, his understanding of what it means to have CP continues to grow. I hope he embraces it and sees it for what it is: one part of who he is. I hope that I can also help him understand that every one of us has challenges to overcome, along with our gifts, talents and strengths. But I do know that he already realizes that when he sets his mind to something, he often can succeed—and for that, I'm seriously grateful.
Random idea... Ms 21 has down syndrome and in the last few years has discovered Glee - and one of her favourite actors is Lauren Potter. A great example of how seeing diversity on screen is good for all of us.. she is thrilled to see someone like her who is famous. May be some similar opportunity there for Max out there?
ReplyDeleteNow if I could just get my kid to stop saying SNAP! (the trademark of Lauren Potter's character on Glee) every time she beats me at cards...
Ha. This is a great idea. We've tried watching speechless (Micah Fowler has CP), but he's not into it. We'd *love* for him to someday see Breaking Bad, one of our all-time favorite series (R.J. Mitte has CP), but it's too intense for him right now. But now that you mention it, I think he might like some comedians with CP on YouTube, like Zach Anner and Masyoon Zayid. Thank you.
DeleteI think sometimes parents, in their quest to support their child try to push a positive mindset and that can be great but everyone has parts of themselves they don't like or at least don't like all of the time. People in my Spina Bifida group have a wide range of opinions about their condition(s). And for the most part how they feel about their condition does not seem to impact how they feel about themselves or how successful they are in life. What does seem to cause people to feel negatively about themselves is the people close to them speaking really negatively about disabilities or treating them like they are less capable than they are. I'm sure you don't do that with Max. As someone who grew up with a disability I hope you consider that Max is entitled to not like Cerebral Palsy. Having a disability does shape who you are but it alsp often set up a lot of road blocks. We get tired of all the appointments, pain, surgeries, and missed chances even as we recognize that who we are is often intrinsically tied to our condition. I like who I am and I think that my physical limitations played a big roll in who I am because I am quite different from most of my family. I would not change the past but if I could snap my fingers and make it go away tommorow I would. It hurt to have people try to tell me how to feel when I was a kid. No one should tell you how to feel about your own body. I understand Max may need more help conceptualizing all of this because he also has an intellectual disability but I really hope you can recognize that just validating how he feels can be the most supportive thing you can do and is what many of us wanted as kids and teens and still want. "Sounds like you really don't want to go to the doctor again. I know it sucks to have so many appointments."
ReplyDeleteThese are wise words, Jessica. I appreciate them. I do understand that he has a right to dislike having CP; I don't tell him (or any of my kids) how to feel about anything. I agree, validation is key. We had an interesting discussion with the doctor today, who noted that Max is working hard on forming his identity (as teens do) and is working through the fact that he is different than his siblings/other teens he knows. This is why it's especially helpful to me to hear from adults in the community with CP. I try my best, but your experience is invaluable. Thank you
DeleteEchoing what Jessica said, I think it is important to let Max know it is perfectly acceptable to go through phases of not liking his cerebral palsy or to not like parts of it (like the doctor's appointment). I think most if not all disabled people have things they don't like about their disability yet can still overall have pride in it- I know I do.
ReplyDeleteThanks, Kathryn. That's exactly where I'm hoping Max will land someday.
DeleteThis is oversimplifying of course, but hopefully not trivializing ... My first reaction to your conversation with Max about his evolving attitude to his disability was to think:
ReplyDeleteRight. On. Schedule.
If at this point Max "hates" his disability but basically loves being himself, then it's all going quite well.
Andrew, if you don't mind my asking, did you go through this as a teen, too? Is there anything your parents did that was particularly helpful to you? In answer to your q, Max definitely loves being Max—so, yay.
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