18 hours ago
Friday, February 5, 2010
A word to my fellow bloggers at Blissdom: Please don't pity my child with special needs
Hey, peeps. And hey, New Peeps I've Met At Blissdom. Just taking a quick break for a public service announcement. I've been talking with lots and lots of moms. And when I say that I have a kid with cerebral palsy, I've been getting that pity look and the occasional "Awwwwww......" This is something that typically happens when I meet new people. And so, I figured I'd put up a post I originally wrote for PhD In Parenting to help you understand why my little boy, Max, is not a kid to be pitied. I know, it's hard to know what to say, but rest assured Max is a happy camper who defies the doom-saying doctors every single day. Also, take note of the good hair. I'm going to quote Kevin Carroll, the motivational speaker we just heard today: "Circumstances do not dictate someone's destiny."
Oh, and please don't pity me, either; Max is an amazing kid, not a tragedy. If you want to pity me for anything, do so because when I called home last night and said to my five-year-old, "Do you miss me?" her response was, "MOMMY!!! WHAT are you bringing me HOME? DO THEY HAVE ICARLY DOLLS?"
OK, here's what I wrote:
This is my little boy, Max. He’s seven.
At first glance, he may look like any other kid. And in many ways, he is like any other kid. He loves chocolate ice-cream, trucks, airplanes, his toy tractor, chocolate ice-cream, t-ball, splashing around in the pool, the movie Cars, pulling his little sister’s hair. And also, chocolate ice-cream.
Max actually has cerebral palsy. It’s a scary term, I know. Before I had him, it seemed like a terrible fate to have a kid with disabilities.
Then I had a kid with disabilities.
Max had a stroke at birth. Crazy but true: Babies can have strokes. It was a stroke that damaged both sides of his little baby brain. My husband and I were told that Max may never walk or talk, that he could be mentally retarded, that he might have vision and hearing problems. Every single one of my nightmares became a real possibility.
Max walks. He runs, too. He speaks words. He sees fine. He hears perfectly. He’s bright. He’s funny. He’s interested in the world. Yes, he has his challenges: He cannot talk fluidly, and he has trouble using his hands and chewing food. But he’s doing really well for himself. And he makes me happy, blissfully happy, every single day. Because he’s so sunny, because he’s a fighter, because he is an all-around phenomenal kid.
That might not be what you’d think if, say, you were to spot us at the playground.
You might feel sorry for my child. I know, Max may look a little pathetic when he drools or when he’s struggling to pick up something and he can’t. But, trust me, he is perfectly content with who he is and one very cheerful, life-loving child. Who will someday be quite the ladies’ man, I know, but I’m not quite ready to worry about Max and dating. Maybe when he’s seven.
You might think that my child should be treated differently than other kids. Nope. Max likes it when you talk to him. He likes it when you joke around with him. He likes it when you fart (although I’m not expecting you to do that).
You might think that your kid and my kid don’t have much in common. It’s true Max may not be able to do some things other six-year-olds can do, or do them in quite the same way. But just like your kid he likes to play, pretend, laugh, get silly, touch dirt, roll in the dirt, get himself entirely covered in dirt, bring home dirt, track dirt all over the house. You get the picture.
You might feel embarrassed if your child says something “inappropriate.” You know, like “Mommy, what is wrong with that boy?” or “Mommy, why is that boy drooling?” Don’t worry, I won’t be offended; kids are curious. Kids don’t get it. I understand that. Just as long as your child doesn’t ask, “Mommy, do you think that boy’s mommy could use a little liposuction?”
You might think it’s rude or awkward to pull your child aside and explain that my child has special needs. Actually, I’d appreciate it if you did do that. Sometimes, kids don’t know what to make of Max or how to play with him. I can certainly jump in and explain things to your child, but it’ll be much more reassuring and encouraging coming from you. Say it however you wish–“This is a child who can’t talk like you do but who likes to play just like you do, you may just need to have a little more patience with him”—but please, say it.
Your child will learn about kids who have special needs. My child will feel included. Everyone will have fun. What could be bad? Max is just a kid. A kid with special needs but still, just a kid.
Posted by Ellen Seidman at 1:49 PM