Tuesday, June 28, 2011

Parenting kids with special needs: Supermodel Max (and other games I play)

There's a little game I sometimes play in my head—let's call it "What will he be?" It's about what Max might grow up to do. Take the other morning. As I was rushing around getting ready for work, Max and Dave were playing baseball in our kitchen. Dave would pretend to throw a pitch. If it seemed off, Max would shake his head and Dave would cry "Foul!" and then do it again. If the pitch was good, Max would hit the ball with his pretend bat then zoom around our first floor, sweeping the pretend plates.

"Could he be a pro baseball player?" I wondered as I put on my makeup. On the plus side, Max can run pretty fast, especially when he's outside and it's time for him to come in; he loves to shoot off down our block and make me chase him. On the challenging side, I'm not sure his arms would be up to the task. Fine, he'll just play for fun, I decided. Who needs the multi-million-dollar pro contract.

And so the game goes goes. Could Max someday be a restaurant owner? A chef? An accountant, like my dad was and my sister is? A doctor? A detective? A pasta maker? A blogger? I've pondered them all.

There was another game I used to play when Max was a baby, What If. It basically went, what if Max had never had the stroke—would he be crawling now, like that baby? Or babbling like that one? Or playing with a toy like that one? Would he look different? What would he sound like? It was a totally depressing game. I grew out of it.

That same morning I played "Could he be a pro baseball player?" I found the above ad in a magazine during my commute to work. The kid totally looks like Max—the dark, extended eyebrows, the lush lashes, the big brown eyes, the smile, the teeth.

"Could Max be a model?" I wondered. OK, he's handsome (and I say that totally objectively, of course). He's not great with posing on request, but in a quiet setting with just a photographer around, it could happen. His speech issues won't be a problem, given that models don't have to say much on the job (for print ads, anyway). Could he do a catwalk? Hell, yeah. "And now, here's Max, modeling the last in purple!"

So I've decided Max has potential to be a supermodel.

The "What will he be?" game never leaves me bummed out. It's cathartic to sort through possibilities, celebrate Max's skills and accept the ones he's still working on. And it's fun. I once giggled out loud in the middle of a work seminar at the thought of Max as a bull fighter (don't ask) and had to start coughing to cover it up.

Have you played this mind game..or any other kind?


  1. When my daughter was a baby, I'd obsess over babies with two hands. Obsess. I'm over it now. I wonder if my daughter would have the same self confidence if she has two hands. I wonder how I'd be a totally different, less aware parent. Yes, I play the game as well.

  2. I think my mom and dad are stuck playing that depressing game which is sad really because they are missibg out on the great person that I am

  3. I've actually joked my son Max could be a runway model, because he loves walking back and forth and he is fairly tall.

    I've also wondered, maybe more than I should, if he will ever be able to do anything with his music. He plays piano by ear and loves to sing, but does not 'perform' for others. I can't even get him on tape because he always stops when I get out the camera!

  4. I don't let myself go there. I just want Emmett to be happy and I want him to have friends outside of the immediate family.

  5. I think we all play those sort of mind games not only with ourselves, but our children...what if we had more money, a bigger house, lived in a different part of town, etc. It's our nature. I'm not saying it is right, or we should do it, but that's just the way it is.

    As long as we are being the best parents we can be to our children we just have to put our faith in God that he will take care of the rest. :)

    Great post. I thought the boy in the photo was Max!!

  6. It's a little to painful to play that game most days. I do, as we all do I'm sure, wonder how things would be if he was different- 'normal'. What he would be into. If he would be playing sports. But he isn't different, he is who he is, and I am who I am because of him. I can only think there was a reason I was blessed to be chosen his mother. My only hope is that he will just be happy, wherever life takes him.

  7. i was just playing this game about my baby the other day! i decided that he could be an excellent "pop and lock" dancer due to marfan syndrome, so i posted on facebook: "Decision has been made. J is going to grow up to be a dancer and win SYTYCD. Thus, I can live vicariously through him."


    m is obsessed with memorizing logos right now, so i'm thinking he'll make a great marketing director, or maybe a honda salesman since that's his favorite logo.

  8. Button has recently informed me that he wants to be a "tram driver in disney world" - the perfect job for my autie boy! You don't need to have to talk to anyone and the route never changes!!!! It's just a pity we live in Ireland!

  9. All the time. In one school we looked at for E., the director told us that an Aspie she had twenty years ago who was obsessed with trains and time now works for the NYC transit system scheduling and managing the subways.

    I believe E. will one day wow us all with his inventions and computer products!

    Also, I have a beautiful daydream that he'll get married. Every time I go to a wedding, I pray that every single one of my kids will get married,and remain so, happily.

  10. I do it but I try not to. All he wants to be is a school bus driver right now but because of the stroke his left sided vision is not there making it very unlikely that he will be able to drive himself let alone children. It makes me kind of sad that he wants to do something so achievable (unlike say him wanting to be a movie star ect) and yet it will not be to him because of that stupid stroke.

  11. I have to admit, no. Perhaps I should. I suppose our dreams were for 12 to speak fully, that isn't going to happen, she will most likely always only have a few words, although we keep working on it and trying to encourage her to speak.

    I see too much the child whose cognitive abilities lie around the 2 year mark. She won't be able to do even the simplest, mot basic job.

    I try not to think about it too much, just work on what she can do and encourage her to stretch to the next thing.

    Dreams are for others.

    Max could definitely be a model, he's a stunning boy.

  12. Have you ever thought of getting Max a camera, letting him try his hand at photography? With a tripod, the unsteady hands wouldn't be an issue. They also make all kinds of remote switches that can be wired (or wirelessly) attached to the camera, which could make depressing the shutter easier.

  13. My youngest would love that pink bullfighting suit; the bull, he could take or leave. I think he's going to grow up to be a fashion designer or something to do with "esthetics"--he loves clothes (my mother once made the mistake of letting him get busy with one of those stupid BeDazzlers that she got as an unwanted gift--he went to town on his underwear, among other things), he has gotten into my and his Grammy's makeup more than once, he loves to move stuff around to make things around the house look "like the magazine," so I can't see him as a bricklayer or a carpenter. As for a catwalk, I could see him pushing models out on it and screaming "Work it, honey!"

    My oldest just wants to do what Grampa does--ride on the lawn mower, plow snow, be a volunteer fireman, fish, do heavy equipment landscaping, do some back yard farming--if Grampa wanted to be a ballet dancer, that would be his goal too. Monkey see, monkey do! He's pretty strong, doing that kind of thing might be a viable future for him (not the fireman bit, but the other stuff).

    I think (and with deep shame I admit this) I used to wish that my youngest would do LESS of some of the stuff he likes to do. I mean, the kid has a hard enough row to hoe without having to deal with bigots on top of everything else. I did the old "redirecting" trick a time or two when his behavior didn't fit the TV commercial "boy" conduct, and it didn't work. He doesn't like trucks or baseballs or any of that "boy" crap. He likes Barbie dolls and playing dress up.

    The hardest thing to do, sometimes, is let your little darlings find their own path, encourage them along the way, try to keep them safe, but not put your own (and in my case, slightly bigoted) hopes and dreams too heavily on their shoulders. I'm sure my mother hoped I'd do a little better than I've done with my life, but never once have I felt that from her and I must admit I am grateful for that.

    Que sera sera when it comes to the little ones; they will be what they will be. Hopefully, they'll be fabulous whatever they decide to do.

  14. My husband and I have often joked that Haley would be a great video game tester. If a game could survive her, it could survive anything.

    Haley would love to work near trains. I don't think she would like to be in the cab, but somewhere she could see them would be good...

  15. Ellen, I love to read your comments! I love your blog too, obviously, but I really love your comments. I do a lot of learning here . . . tonight the breadth and depth of response is again amazing. I am struck by nisha360's comment that she finds this game depressing because she feels her parents miss out on who she is, and Felicia's comment that she never felt her mother was disappointed in her. I was always expected to do well and also expected to join in praising my brother for just managing to pull himself together and scrape by because he was so often on the brink of failure (one of those genius who fail types: brilliant IQ, musically gifted, a great writer who never writes, has an extraordinary memory and who will fail at aboslutely everything he tries). I am still kind of angry that I was supposed to celebrate that he got a full time job as a janitor and got BENEFITS while I was in law school at the university that employed him. I am pretty sure my mom didn't call him whenever I got a full time job. Wow, did I learn anything useful for parenting my own two brilliant daughters, one of whom has some limitations? Thank you for reminding me that I better pay some attention to what message I am sending. I did once say I wanted my daughter to be President and my friend said she just wanted her daughter to be happy and I felt like a fool. In the last few days, because I know a woman who was just sexually assaulted, last night when I cuddled my girls to sleep I cried because I wanted to believe they would never be subjected to any such thing. My dream yesterday was that they be safe from harm! I wish my version of this game was always upbeat at least, and focused on opportunities and not on pitfalls or risks. And people who know me consider me an optimist! This was all very thought provoking, so I think I better get a cocktail and go ponder some more.

  16. I've played the marriage game. My daughter has CP and I'm hoping she will get a job, get married and live alone. She has a rare mild type- spastic monoplegia. It only affects her left leg. It could be worse, I've told myself when I felt worried in that 1st year.

    On a side note
    Maybe Max could work in a office. He only has mild CP, right?


Thanks for sharing!

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