Monday, May 16, 2011

In the inner circle, there is no "weird"


Friday, I was filling out a form for a program I was taking Max to the next morning, sponsored by the local ARC. The kids play games, do crafts, have lunch, hang out.

Name: Max
Nickname: Spaghetti Sauce Max
Child likes: Best friend = Caleb, spaghetti, the color purple, trucks, cars, spaghetti, cars, coloring, did I mention spaghetti?
Dislikes: Anything loud
Describe what motivates your child: Discussing spaghetti and sauce and repeatedly saying "Max eats spaghetti with sauce." Also, anything purple.
How does he/she calm down? See above

As I wrote, I stepped outside of my head. And wondered whether the staffer reading the forms would think Max was...quirky. Weird, even. I find his obsessions cute and fascinating (mostly). But the act of writing them down made me ponder how someone else might view his spaghetti fixation.

I have been thinking a lot lately about how people see Max. This is not simply because I want him to fit in, so to speak. I ache for people to look beyond his disabilities and see the charming, funny, smart, complex kid I know. I want them to see Max, all of Max. Not just a child with cerebral palsy.

Then I got a grip: In the special needs community, there is no such thing as weird. For the people at the programs we go to, the teachers at Max's school, the therapists in his life: quirky is the norm. I may have a ways to go to get the world at large to see the wonderfulness of Max. But in the inner circle of special needs that we inhabit, he is who he is—and people usually adore him for it.

I finished up the forms and packed up some lunch in a container (one guess what it was). The next morning, Sabrina and I drove Max to his program. The woman running it glanced at his forms and smiled.

"Hello, Spaghetti Sauce Max," she said.



Photo/Donkey

21 comments:

  1. I'll tell you what. While I personally may not have Max's set of challenges, I too am equally obsessed with spaghetti. So you know what, F what the rest of the world thinks and long live spaghetti!

    PS, when he gets older, if he is still obsessed with spaghetti, you should totally take him to Italy. It just seems fitting in my head (Which is truly a scary place.). Though for all we know, he might have moved on to Mexican foods by then. But hey! Mexico is closer so that might work better! (read: cheaper)

    Meanwhile, Max is fascinating! He is so unique in the best way possible! I enjoy the glimpses you give us into his word. He is amazing and magic and, well, those of us who have only ever read about him see that, so anyone who is lucky enough to actually meet him I'm sure can't help but be aware of how amazing he is.

    If all else fails, having clicked the link I see ARC is for people with disabilities so I'm sure they are use to these sorts of things. Really, they can't possibly be too surprised.

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  2. Weird? Get away!
    "Whatever gets you through the night" as they. "Whatever floats your boat."
    Ashley can't sleep without toy cars in each hand. Jo (no disabilities) sleeps sitting up. I (fairly normal) have to check the outer doors at least twice before I go to bed.
    We all have quirks. It's part of who we are. Some go, some stay.
    And as for people not seeing what a fab kid he is..... Come on. It shines through with that beautiful smile.
    "Whatever tickles your fancy"

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  3. I think you're wish for Max is the wish of every person with Cerebral Palsy. The only time I feel seen is when I'm writing (because people can't see my disability only my words) or when I'm with my phsiotherapist - Gerda - my mother tries but somehow or another she ends up minimizing everything I do. For instance, we were at somebody's house and the lady asked What does Nisha do all day and mother replied nothing even though she saw me staying up till 12 trying to raise enough money to build this well don't get me wrong I didn't start this campaign so I could get praise but anything would have been better than saying I did nothing

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  4. Ooooh yeah, I love her welcome! When you step back it's sort of hilarious, isn't it? Dave and I sometimes just stop and listen to the mad noises mikey makes and realise what he must sound like to 'outsiders'. We can only laugh and embrace it, I guess?!

    It's hard when you're constantly having to explain about disability, it often feels as though Mikey is lost in there somewhere. The world wants us to talk about their disabilities, we just want to talk about our amazing child.

    Keep going. You're ace! X

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  5. When I find myself listing all of E's, um, quirks for his teachers, therapists, etc., the reaction is universally positive. That there *are* things out there that motivate him or soothe him is awesome, and it makes everyone jobs so much easier.

    Max is a very cool kid.

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  6. Man, we're all weird. All my kids do crazy, quirky things in their own way. In fact, I'M weird too. So it's all good. Maybe we should be filling out those forms for ALL of our children?

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  7. I agree with Julia that it's awesome that Max has such strong interests that help people see his personality!

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  8. Weird timing of this post. Just was at an event that benifits Ryans School Heartshare. Left leaving another Family Fun event wishing people understood Ryan. While everychild waited on line, I needed to hold Ryan back while he screams because he doesnot understand waiting. Trying to make better choices all of the time, I guess this one was not one of my better ones. Each day is a learning experience, I just wish that people were more understanding and understood that there are kids who are just different.
    Sondra Whalen/Sondras67@aol.com

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  9. I thoroughly enjoy spaghetti as well. It's good someone appreciates it. I can only imagine one day you'll take him to Italy and he'll devour all the spaghetti he could possibly want.

    I'm 17, and as someone who is planning on going into special education, reading about Max has been delightful. Thank you so much for keeping everyone updated on your lovely boy. Tell him I said hi!

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  10. This is one of the things I like, that these forms are just to help make things easier for the kids, not to point out weirdness, because the staff are used to foibles.

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  11. I love reading about Max's personality. It must be fun that he feels so strongly about some things, like spaghetti. M is obsessed with McDonalds. I sometimes worry people will think we feed our kid nothing but junk (we have some very "crunchy" friends) but you know what? It is so funny to have the same conversation with him at least 3x a day:
    "What do you want for lunch?"
    "N'Donalds"
    "We don't have that today."
    Umm....am-burg-ger?"
    "Nope."
    "Cheese?"
    "Yes, we have cheese."
    "Bread?"
    "Yes, we have bread. Do you want a grilled cheese sandwich?"
    "AM-BUR-GER! N'Donalds! Friiiiies!"

    The child is nothing if not determined. :-)

    I'd also have to have an "autism-themed" birthday party for him this year, if I can figure out a place to do it. We'd only invite kids from our autism group and there'd be no games or expectations, just someone for the kids to sit or play and gluten-free cake. I don't know how it is for other parents, but I find birthday parties difficult because M can seem "weird" then, and I know other parents who avoid them as well.

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  12. As a mom who tells her child on a daily basis not to eat the table, I find I have to agree with you - there is no such thing as weird among us. Or at least, in the words of Hunter S Thompson "When the going gets weird, the weird turn pro." Vive la difference! ;-)

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  13. I have always struggled filling out those kind of forms for my kids who have varying disabilities. I never know if I'm saying to much or to little. For my child with a rare genetic disorder I knew I had to sound crazy to them by writing that if they talked to her about food she would be happy. My youngest child who has sensory processing disorder used to bang his head into floors. I knew people at playgroup thought I had the strangest kids in the world. Groups geared towards special needs are important for that very reason. There is no judgement of our kids. Nothing is weird true are just kids and simple. I Love reading about your Max. My youngest sons name is also Max and by the way he never met a plate of pasta he didn't like.

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  14. This one almost made me cry. Thank you soooooo much for this post.

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  15. Special needs or not, weird is cool. I always call myself weird because, being a writer, I see the world differently than most. And I'm perfectly okay with my weirdness. So I say "Rock on, Spaghetti Sauce Max!" :)

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  16. Being part of the CP club...we don't believe in the norm...max loves purple, I am love green! We all have our things. Being the norm is overrated.

    When I use to teach I would always get the "different" kids because other teachers didn't know how to embrace them...let me tell you we had the best room in the building :)

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  17. Hey, it's always something. My baby is obsessed with pink and wants to be a girl (and I don't think he's "outgrowing" that wish, either). You just deal with it, it's all good!

    So long as they're healthy, happy and loved, you're doing your job.

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  18. This made me smile. It sounds like a great program if that's how they greeted him!

    P.S. When your kids get older and you spend more time with them in a group, you will see that there are lots of "weird" out there...without a label! ;)

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  19. You guys make me cry......
    Max teaches you all so much about what really matters in life, doesn't he?
    And when we read you, we do learn also, about what counts...about love, about respect, about friendship..
    these lessons travel the world
    I live in Brazil, don't remember how I got here, but love reading your blog...thanks!
    Daniela

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  20. Yessssss! So true. I think of that everytime I go to special needs soccer.

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  21. Great post. The inner circle is awesome, and I'd like more people to be included in it!

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Thanks for sharing!