Tuesday, December 10, 2013

The trouble with the too small sneakers


Dear Max,

Today you turn 11, and I'm not quite sure how that happened but somehow it snuck up on me. Your pants are getting shorter on you, the winter jacket that was humongous last year is barely zipping up past your belly and your beloved Lightning McQueen sneakers are dangerously close to not fitting.

I have been hoping hard that they'll last till the end of the month, when we're going to Disneyland and Cars Land. You've already packed your new Lightning McQueen suitcase with clothes and various Cars paraphernalia, and this weekend you toted it everywhere, gleefully pointing to it and your sneakers. Technically, you're not supposed wear them—they give your feet no support or stability whatsoever. You really should be in the foot braces you wear on weekdays. Especially since last summer you had to get casts on both feet because they were turning in, and I don't want to put you through that again.

So I let you wear your beloved Lightning McQueen sneaks just a couple days a week. You've been through four pairs. I dread the day when they get too small and I have to tell you that there are no bigger ones after these, size 13. And that, my love, is one major problem in this world.

Too many people don't get that an 11-year-old would still want to wear Lightning McQueen sneakers. They may not understand why you talk, move and act the way you do. So often, as I've learned these past years, people aren't able to see beyond their visions of what a kid should "be" like at different ages.

And to that I say: It's not you, Max. It's them.

Sometimes, I see adults and kids staring. When you were little, this used to upset me, but I've come to accept that people don't mean to be rude or mean. Chances are they don't have anyone with cerebral palsy or other special needs in their lives so they're not sure what to make of you, Max. They can't tell that in many ways, you are a kid like any other kid. They can't see the ability.

I understand why they don't get it. Until I had you, I'd never been close with anyone who had special needs. You have opened my mind to a broader spectrum of diversity. You have changed the mind-sets of people in our families, our neighborhood and others who have the pleasure of knowing you. We do not think of you as disabled. To us, you are Max.

You never notice the stares, and even if you did I suspect you wouldn't care because you are completely comfortable with who you are: a Lightning-McQueen-loving, mac-'n-cheese-and-ketchup-eating, purple-and-police-obsessed young man. An 11-year-old who still squeals with delight at bubbles, silly faces, a trip through the car wash, a new container of Ben & Jerry's Chocolate Fudge Brownie in the freezer, the sight of the year's first snow. Daddy calls them your "happy sounds" and they bring us both so much joy.

When I tucked you into bed last night, your final hours of being 10, tears came to my eyes. You looked at me worried and said, "Eye-ing." (You haven't yet mastered the letter "c," but I think you will.) I gave you a big hug and smiled. I wasn't thinking of that day 11 years ago when we found out you'd had a stroke. I was melancholy that my baby is getting bigger, the way moms get.

Max, I couldn't be any prouder of you. You're reading many more words. You are increasingly articulating what's on your mind. You have gotten braver about venturing to new places, including the movies and busy restaurants that would have once made you run right out the door. You have learned to open your arms and give hugs, especially when I present you with some Lightning McQueen piece of merchandise. (Your dad and I joked about buying you Disney stock as a birthday present.)

I love the determined look on your face when you type out words on the speech app on the iPad, how excited you are when you know the math homework answers, the way your voice sounds every time you say a new phrase (popular now: "let's go!"). I love that whenever you're eager to be somewhere, you ask "Now?" (When we told you months ago that we'd be visiting Disneyland in December, you said "Now?") I love your cheeks that remain deliciously pump, your beautiful head of hair, the brightness that shines in your eyes.

As your mom, your cheerleader and your publicist, I am here to spread word of your greatness. (One of these years, some kid is going to sue their parents for blogging about him, and I hope it's not you.) I yearn for people to see you, not just the CP. Sometimes, when I notice others looking, I'll prompt you, "Say hi! Tell them your name" to break the ice. If they start talking over you, as if you're not there, I'll say, "This is Max!" and introduce you.

They don't know, Max. They don't know...yet.

To me, you are perfect—well, as perfect as any child is. I could do without the screeching when you're upset and your new-found habit of stomping on the living room floor as you sit and watch TV, which makes the lights in the ceiling fixture upstairs tinkle. I could also do without your little sister's attitude, as you know because when she gets obnoxious I'll shoot you a "What is up with her?" look and you smile knowingly as if to say, "I'm not the only one with special needs in this family!"

Lately, I'm fascinated by your flourishing imagination. This weekend, at the supermarket, you walked over to a closed register lane, put your Cars suitcase on the conveyor belt and pretended to have me pay for it. Then you put my ten dollars in the suitcase.


My birthday wishes for you: Keep right on loving Lightning McQueen, playing with toy cars and trains, scribbling in purple crayon only, giggling at snowflakes and believing in Mickey Mouse, birthday parties and all that's magical. I'm sorry there won't be another pair of the Lightning McQueen sneakers like these but we'll find you a cool new kind, promise. You're not getting "too old" for any of this. You are who you are, and who you are is amazing. My birthday wish for the people you encounter in this world? To see that, too.

Love,

Mommy

35 comments:

  1. I love this so much ... Why am I bawling?

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  2. That was a sweet post, but two things -

    When you say you can't blame people for staring it sort of sounds like you think it's ok to stare because something different is so...so stareable (not a word I know). Not saying you mean that - just saying it could be taken that way. Or maybe it just seems so to me because I've been told not to object to people staring at me because I look so odd. But no matter how 'odd', I think we all have a right to some dignity. People know disabilities exist. Why stare people down?
    People know not to stare at other groups of people such as those who are overweight.
    Why is it that disability is sort of the last minority it is ok to poop on? (I'm NOT saying
    you think that at all - but your words just made me think of the issue and you seem thoughtful enough to at least understand the question. Many don't even get the question). No other minority takes the crap that people with disabilities do. Why?
    And as for the shoes - there are people who do shoe art. If growing out of his shoes is really going to break his heart, maybe a shoe artist could help. In the DIY world, anything is possible.
    Also -Happy Birthday Max!!

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    1. Ellen has always maintained that she hates when people stare-- thus the reason she tries to get them to engage WITH him.... so they can see that he IS a person. (A person with dignity, interests, quirks... just like the rest of us.) I agree, people should NOT stare- your analogy of staring at a overweight person being inappropriate is so right on. I'm deaf and often get stared at for signing - but I GUESS if I had to pick, I'd rather them stare and maybe, in that staring, come to realize I'm just a normal person who talks differently. The alternative being them glancing over then IMMEDIATELY looking away awkwardly. It makes me feel like a "freak." The staring gives us a chance to ADDRESS them.... although, yes, it shouldn't even happen. There are days when I wish I didn't have to be the teacher to every ignorant person I come across. Can't wait for the day when disability is regarded as just yet another way of existing/being.

      Also-- the shoe artist/etsy idea is fantastic! Definitely possible. Heck, could even get plain red shoes and then draw eyes and wheels on them.....or let him decorate them himself! :)

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    2. I forgot to say- I think she doesn't blame them for staring because they don't know "what's going on with him." He sometimes screeches excitedly and/or draws attention to himself, which people do not understand....so they stare. They shouldn't but it happens.

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    3. There are evolutionary reasons why humans tend to stare at others who look outside the norm. It IS rude to stare, and it is tendency that people who do not want to be rude need to fight. But wanting to look, to see what is "up' is part of how humans interact. It does not come from a place of meanness (not attempting to overcome that feeling does).

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  3. Your description of Max pretending to sell you his suitcase reminds me of your "regifting" post: I thought then that Max was re-enacting an event he likes by pretending to get a present ("imaginative play", as the developmental psychologists like to call it). Like kids the world over, he acts out play scenarios, and ropes in willing participants (you at the checkout counter, Dave with the gift).

    On another note: There are Lightning McQueen socks out there, surely some of which would stretch to fit even an adult. So some kind of Cars2 footwear, even if hidden under shoes, could go on for as long as Max wants. Maybe you could even cut the bottoms off and slip them over a pair of shoes?

    And finally: When did Max start using the -ing ending on verbs (as in his version of the word "crying")? This is a big deal, and I'm curious. (Yes, I'm the person with neurolinguistic training who wrote about sentence formation in the past.)

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    1. This is one reason I so love this blog—so that commenters who happen to have neurolinguistic training can point out impressive strides Max has made! His use ofgerund started in the last year or so. Now, of course, I want to understand what it says about his language so if you've come back to read this, please elaborate! Good idea on the socks, I will look around.

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    2. I don't think "crying" is a gerund in this case--even though you were probably taught that a gerund is a verb ending in -ing. Gerunds do end in -ing, but they function as nouns. So, if you think what Max means is "I see crying" or "Crying worries me", then it's a gerund. But if he means "Mommy's crying" or "Are you crying?" or "Why are you crying?", then it's a verb.

      Even though "crying" isn't a sentence by itself, if what Max really wants to say is "Mommy's crying", then he's thinking of a sentence even if he can't quite produce it. The big deal to me is that even if he's only managed to say the single verb, he's inflecting it--he's giving "cry" the appropriate grammatical ending it would have in the sentence so that it agrees with the (unspoken) subject noun. So I think it indicates an advance in Max's knowing how sentences work! And even if he is using "crying" as a gerund--well, that's an advance too. It means he understands how to add an ending to an action-word to modify its meaning into a thing-word.

      Think of it this way: Language is made up of words and grammar. Words have individual meanings, and grammar is a system for combining those individual meanings into more complex concepts. Putting a noun and a verb together is grammar. Inflecting a verb (for subject agreement, tense, etc.) is grammar. Putting an ending on a verb to change it into a noun or a modifier is grammar. I don't pretend to know the exact link between language and thought (nobody does!), but at the very least, Max is showing another step forward in language. You're the judge of his progress in thinking!

      About socks--no doubt you're a better searcher than I am, but here's a tip: the key word seems to be "novelty", as in cars 2 novelty socks.

      --Anonymous Linguist

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  4. You can find Max a pair of LM sneakers, I'm sure of it! People make custom sneaker designs all the time. There has to be someone on Etsy, or maybe even a popular shoe brand. I know for awhile Converse had a website where you could make your own chucks. That way you can maybe pick a more supportive shoe as well! I'll do some googling if I get a chance and see what I come up with.

    We had a similar issue when my cousin hit her teens. She's really into Disney princesses and they just didn't make princess dresses for adults. (At least they didn't make appropriate Disney dresses, they were all...ahem...more "adult" than we would like.) So we looked around and eventually her mom found a friend who was willing to sew a dress for my cousin. She was so happy! I know Disney isn't necessarily "age appropriate" in that sense, but the girl knows what she likes!

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    1. Forgot to say, Happy Birthday to Max! (And to you, Mama. I have a just turned 4-month old and I get teary-eyed thinking about how big she is already!)

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    2. Thank you! I am just a wee bit older than Max. But not so much. And happy four months to your little one!

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  5. Beautiful. Absolutely beautiful. Once I got to the words about his "happy sounds," I really started to cry because we call Kyle's "happy noises." Thank you for sharing such a personal letter to your son.

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  6. I'm so glad that I found your blog a few months ago when I was about to work with my first student who has CP, looking for different perspectives and approaches to working with and teaching those who have it -- Max is such a lucky guy to have such a loving and dedication mom! Thanks for sharing your beautiful family with us!

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  7. What a beautiful letter to Max and the rest of the world.

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  8. Happy Happy Birthday Max!!

    Beautiful letter, Ellen.

    P.S. Cars shoes! Up to size 3: http://www.zappos.com/crocs-kids-mcqueen-lined-clog-toddler-little-kid-red

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  9. Happy Birthday Max!!!!

    Ellen, that was sincere and beautifully written. Thank you for sharing your heart with all of us. Your view on the world and people looking into your world is amazing and priceless. You are not only teaching the family, friends, us followers, and the world, you are teaching Max amazing lessons about people. Incredible.

    Here is to our kids, the real teachers, teaching us parents more and more every day.

    Again, HAPPY BIRTHDAY MAX!!!!

    Go get that Disneyland Max!!

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  10. What about buying red or black converse and putting a cars patch on them? and the great thing about converse is they can fit over afo's/smo's etc. A lot of people say chucks are the only thing that fit their kids. I'm pretty crafty and if you supplied the sneakers I'd be happy to "Cars 2" them up. You could always send them to school with Max.

    I'm so glad his birth and celebration of his life can be a happy time for you. I'm still working on getting there with the birth of my son but I'm only 3.5 years in.

    Enjoy disneyland!

    Aimee (my son is in PS3)
    am369@njit.edu

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  11. I love your love of Max wow I feel the same way my son is 7 developmentally 2months old so baby toys are his form of happiness.... This makes him happy doesn't bother me only when I see other typical 7 year olds that's only when I feel sad..... But I'm so happy you posted this makes me feel better. .. Happy Birthday Max!!@

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  12. I know a lot of people have been posting about custom shoe art (even for orthopedics!) and my friends did that as a really cute option for their 'reception shoes' at their wedding, but what about letting Max make his own cars 2 art on his shoes? Maybe get an iron on patch and some plain white sneakers suitable for 'arting' and let him go to town with some paint pens? All that grasping might be great therapy too! A fun activity to do with the family even as several craft stores (I'm specifically thinking of Michaels) sell kid's and adults shoes for the sole (hee hee hee, shoe pun) purpose of decorating them yourself! Just a thought. And happy birthday Max! :)

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  13. Ellen....
    "So I let you wear your beloved Lightning McQueen sneaks just a couple days a week. You've been through four pairs. I dread the day when they get too small and I have to tell you that there are no bigger ones after these, size 13. And that, my love, is one major problem in this world.". Oh, Mama. Break. My. Heart.... :-(
    "Too many people don't get that an 11-year-old would still want to wear Lightning McQueen sneakers. So often, as I've learned these past years, people aren't able to see beyond their visions of what a kid should 'be' like at different ages. And to that I say: It's not you, Max. It's them.". I get it!! I, too, have obsessive capabilities!! I lived and breathed "The Little Mermaid" {Mom's words!!} for several years!! {And she could tell you how long!!} I'm afraid that, although my obsessive capabilities have become somewhat controlled over the years, I have not "outgrown" them!! ;)
    "They can't tell that in many ways, you are a kid like any other kid. They can't see the ability.". I love this!! ;-D
    "I understand why they don't get it. Until I had you, I'd never been close with anyone who had special needs. You have opened my mind to a broader spectrum of diversity. You have changed the mind-sets of people in our families, our neighborhood and others who have the pleasure of knowing you. We do not think of you as disabled. To us, you are Max.". Yes, yes, yes!! ;)
    "I wasn't thinking of that day 11 years ago when we found out you'd had a stroke. I was melancholy that my baby is getting bigger, the way moms get.". That's right!! ;-D
    "I yearn for people to see you, not just the CP.". Very good!! I would see both Max the kid, and his CP, but not in a negative way!! ;)
    "Lately, I'm fascinated by your flourishing imagination. This weekend, at the supermarket, you walked over to a closed register lane, put your Cars suitcase on the conveyor belt and pretended to have me pay for it. Then you put my ten dollars in the suitcase.". Crack. Me. Up!! ;-D
    "My birthday wishes for you: Keep right on loving Lightning McQueen, playing with toy cars and trains, scribbling in purple crayon only and believing in Mickey Mouse, birthday parties, fresh snow and all that's magical. I'm sorry there won't be another pair of the Lightning McQueen sneakers you adore but we'll find you a cool new kind, promise. You're not getting 'too old' for any of this. You are who you are, and who you are is amazing. My birthday wish for the people you encounter in this world? To see that, too.". Touch. My. Heart.... ;)
    Happy, happy, happy birthday, Max!! ;-D
    Sorry. Long comment!! ;-}
    --Raelyn

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  14. What about the slippers? The Lightning McQueen slippers seem to come up to size 3.

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  15. Happy b day Max I love the blog post. The magic of childhood is priceless. Wish i could be 11 again. Enjoy it Max I hope u have a great year.

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  16. There's an iron-on patch that I imagine would work with cloth sneakers. http://www.joann.com/wrights-disney-cars-iron-on-appliques-lightning-mcqueen/9743600.html

    Also, etsy has this: https://www.etsy.com/listing/155959332/cars-homemade-canvas-shoes

    Happy birthday, Max!

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  17. Happy Birthday Max!!! I have CP and when I was little I was very upset I couldn't wear the cool shoes the other kids had because I had to wear the braces and (ugly) shoes the doctors gave me. I know that feeling. I think that many people (including some doctors) don't understand that we are just kids with our wishes, hopes and dreams: they can only see the disability. I hope the world will soon understand that people with disabilities are just people, it doesn't matter if they do some things differently.
    For the Cars 2 shoe issue I suggest requesting a pair of shoes to Peach's Neet Feet, they custom paint shoes for kids with special needs or fighting cancer. Unfortunately they only do Chucks and Vans, I don't know if they will fit his braces but I hope this can help.
    Love from Italy,
    Ila

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  18. Happy birthday Max xx Ellen this post was perfect x I could relate to so much of it and laughed out loud at you and Max referring to the obnoxious tween! ;) happy holidays x Bron

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  19. This is a beautiful testament of love, Ellen! <3

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  20. One of the best, most awesome birthday letters I have ever read!

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  21. Happy birthday, Max! You finally got that Cars 2 Talking Lightning McQueen!

    Having the wrong passion is insignificant.
    Having no passion is inexcusable.

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    1. Anonymous....
      "Having the wrong passion is insignificant.
      Having no passion is inexcusable.".
      I love, love, love that!! ;-D
      --Raelyn

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  22. Crying over here ! Love that max!

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  23. Happy Birthday Max, your mom writes great letters!

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  24. I so love the suggestions here for alternate sneakers. The thing is, when Max gets attached to a specific KIND of thing, he wants that and only that. It's possible no other kind of Lightning McQueen sneakers will live up to his expectations—but I sure do have a lot of good options to run by him! Thank you.

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  25. This was a very touching post. A Belated Happy Birthday to your child. I do hope that Max finds another pair of sneakers that he will like.

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  27. I am a sobbing mess as I write this. I love your post. I love Max and I love your love for Max. Thank you for writing this. It's amazing. My son is 3 and doesn't have any words yet and I struggle with it every minute of every day. I am scared and mad and sad and above all worried what his future will hold. I am so scared that he will be teased. That he won't make friends. That he won't succeed in life. I try to be strong but sometimes it is just too much. You give me hope. Again, thank you.

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Thanks for sharing!