Thursday, April 30, 2009

Lollipop longings (and other lessons about raising a kid with special needs)

Hey, all. I am doing OK. What a week.

Here's Sabrina in a giant candy store I took her to over the weekend. She sweet-talked the staffers into letting her try lots of samples, then brought home this sucker.

I kept looking for stuff for Max to try. Caramels? Nope, he can't chew them. Sour candies? No, serious choking hazard. In the end, I brought him home a simple chocolate bar, feeling a little bummed about all the stuff he couldn't have. It's why I got so excited the other month when he liked Peeps.

Sometimes, I mourn the childhood things I enjoyed that Max can't yet. Things like seeing a movie in a theater (it's sensory overload for him). Or riding a scooter, one thing every kid in my neighborhood seems to own. Or swimming. Or pogo-sticking.

When I catch myself thinking this way, I force myself to realize that—once again—I am projecting my idea of happiness onto Max. Because Max is perfectly content doing the things he can do. He doesn't know he's missing out on Twix bars; all he knows is how much he adores chocolate ice-cream. He may not have experienced the joys of watching a movie on a big screen but, hell, he loves watching things on his little portable DVD. He rides his adaptive tricycle pretty well, and has a blast on it. He walks around the kiddie pool pushing a float, and he is in heaven.

These are the things I have to remind myself of when it comes to bringing up Max—the cans instead of the cannots, the haves instead of the have-nots.

I guess they're words to live by, no matter how old you are.


  1. Listen, I think a lot of parents could do with your kind of thinking. It is not always _necessary_ to make young kids try all kinds of devices and activities if they themselves have not explicitly expressed their wish to do so. A (too) simple example: baby swings. Baby can't get on it on his own. Parent decides to give it a go, lifts baby, seats him down, pushes him, baby starts wiggling, parent freaks out, takes baby down, baby wants more, baby starts crying. Very energy consuming childcare! I don't know why they make baby swings to begin with. My motto is, if your kid can't use it on his own, don't introduce it - chances are he's perfectly happy with the things he _can_ control, just like you said.

    [ps. I don't intend to exclude any kind of teaching or showing to a kid how a thing works of course.]

  2. This is something I think about A LOT. Emmett's a happy little kid, and what makes him happy is usually pretty simple.

  3. I'm just catching up. I'm so sorry about Karen. She sounds like an incredible woman and had an extremely big life which left it's mark on all those who knew her.

    And this current post is so timely. I know what you're talking about whole heartedly. Yesterday was my birthday. I wanted to share my Birthday Chinese delivery dinner and then get ice cream to share with Amelia -- not to be. She's fed 100% g-tube only. I did give her a little of the sauce from the spare ribs on her tongue tho!

    We're always trying to concentrate on the cans instead of the "can nots" -- but it gets real hard sometimes. Like when you sit in the park and watch other kids do the simplest things that you know your child may never do. But then again, ignorance is bliss...

  4. We don't have a load of money to spend on "stuff" nor a lot of room to stow it, so we don't have a lot of toys. You'd be surprised, though, how much fun two boys can have with the cardboard boxes the washer and dryer came in (they're the fort on the porch for now, covered in crayon and all sorts of scribbles that do mean something, until they fall apart) and their magic carpet (little red wagon--does double duty as a car, truck, carriage, you name it) and of course, the backyard sandbox which is a great place for playing with their action figures and little cars and using their imaginations.

    I used to love the movies, too, but my oldest isn't the best in situations where you're supposed to be quiet and use that indoor voice, so we're better off with a movie at home or over at Grammy and Grampa's. We really have more fun, too--no stress, no overpriced popcorn--and we don't mind waiting for a film to come out for home viewing.

    Best outdoor fun for my kids is the big red rubber ball. They kick it, chase it, throw it, have fun with it, play games with rules I can't fathom, and get a good workout. They also still love the silly paddles with the rubber band and the ball attached, even though they miss more than they hit!

    I just let them have their fun and make their own path and create their own set of memories. They don't have to reblaze my trails, they're having enough fun doing it their own way, to suit them!

  5. Just a daughter had a stroke at 6 years old. I know a little guy who had an infant stroke and he is positively swinging through life! Good luck with your little one. I am sorry about your friend. Nice meeting you.

  6. Ellen,
    I can so relate. I often find myself projecting my feelings onto Elijah. I'll see another kid his age doing something and I get sad thinking that he should be doing it too. Does it bother Elijah? Nope, he's a really happy guy and could care less what other kids are doing. I remind myself that it's MY hopes and expections that get in the way, not his. He loves life and all that it has to offer -whatever that may be.

    As for food, I totally get the longing to be able to feed your child things you enjoyed as a kid (or now). Elijah, along with having issues with chewing and swallowing, is extremely allergic to milk and somewhat allergic to eggs and peanuts. Argh! Needless to say, he's hardly allowed to eat anything and it really bugs me sometimes. Does he care? Nope. He loves the veggies, fruit and meat that he's able to eat. But, even with that knowledge, it's still hard sometimes isn't it? :)

    Hang in there Ellen, I know it's been a rough week.

  7. Amazing post Ellen! I love it. Very true very true. I still go through the "I wish", and I am sure I will continue to, but again your post has put things in perspective for me.

  8. I recently started reading your blog (I think I found you through 5 Minutes for Special Needs ??). I have really enjoyed "getting to know" Max. What a great kid!

    I have an 18 month old with CP so I feel like we are really just beginning this journey. What a roller coaster ride!

    This post really hit home with me - it is very easy to focus on the negative, but there is so much joy in celebrating every little thing. I think that applies to parenting and all of life really.

  9. there is a quote form a ,ovie I like I forget the name but the quote gose around the lines of . We acept the world in the way it is presented to us. I wish I remebered the name.

    ps may comment is good


Thanks for sharing!

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