Wednesday, June 2, 2010

Measuring our kids' progress

We had such a great time at the beach this weekend that we dragged it out till Monday night, when we hit some kiddie rides because we figured we'd get stuck in traffic going home, anyway.

We go to these rides about once a summer. Last year, Max was very wary of walking in—there's a lot of noise and flickering lights. This year, he went in with just a little whimper. He spotted one car ride he loves, got all excited and went on it for a few rounds. He tried another. Then he was done, no interest in going on any other types of rides, not even the cute airplane one.

Because we visit there annually, I tend to treat it as some sort of indicator of Max's progress. I do the same with holiday meals, his IEPs, school photos. Here's how Max is doing now, this is how he was last year at the time. Sometimes, these are really reassuring, heartening reality checks. Sometimes, I end up reading stuff into them that isn't true. Like Monday night, as I stood there in the twilight with Max in the little car, Dave and Sabrina going on every ride they could, and the squeals of happy kids all around, I got concerned that Max hadn't mentally progressed beyond enjoying the two car rides.

I had a good talk with myself on our car ride home, there was plenty of time for that because of course everyone had the same "brilliant" idea to leave late. Whoa there, I thought: there is no kiddie-ride report card. Get a grip. Right now, Max is just not into anything other than car rides—it's a preference, not a sign of limited curiosity. He also can't get past the hustle and bustle, which has to do with his sensory issues. Other than that, though, his behavior is no real indication of anything.

I thought about all the other stuff Max is doing now that he wasn't doing last year: He has a lot more words. He is able to pretty easily climb up and down stairs while standing upright, if you hold his hand, and clamber up them on his own on his knees and go down them on his butt. His general comprehension is better. He is using his pointer finger for the first time in his life (isolating one finger is a tremendous feat for him). He isn't just eating meals by himself, he is insisting on it. He can pick out letters on a keyboard. He can spell his name. And his cuteness? It has no bounds.

Max did something new in the car ride home last night. He has this habit of turning on the little interior light right above his booster seat. He clicked it on at around 10:00, right when Sabrina and I wanted to take naps. "Max, can you turn out the light?" I asked. "Nooooooooo," he said, grinning. "Please, Max?" He raised his fingers up to the light and held them there. He put them down, then he raised them up again. He smiled an even bigger smile. He was totally teasing me.

Now that's progress.


  1. Wow. Looking at these pictures, I'm pretty sure he aged over night.

    I do the same thing with certain events--Christmas, the dreaded Easter Bunny picture--trying to see where Charlie measures up compared to last year. You're right, though, I need to stop making a big deal out of things that aren't worth it the stress.

  2. That's so funny, as summer rolls around again, I was just thinking about all those things we do once a year or so. In fact, my post on the NYC Moms blog that's going up tomorrow is about the Victorian Gardens Amusement Park and Jake & Ethan's history there. How funny. Also you might want to take a look at my latest post on my blog "The Squashed Bologna". It's all about Jake and called "From Autist to Artist."

    Again, really nice post, I'm sure every family w/ a SN child can really relate to the "Progress Marker" ups & downs.

    p.s. I'm looking forward to hanging out w/ you & the other SN moms at BlogHer and of course, I voted for you. twice ;-)

    p.p.s. Sorry I had to re-do my comment, I HATE typos.

  3. What a cutie-- his hair is getting so long!

    It sounds like Max has made some real progress, no matter what his opinion on airplanes might be right now.

    Connor's performance at certain activities we do often varies incredibly widely depending on how he's feeling that day, the weather, how many people are there, and a variety of other mysterious factors that determine whether or not he'll participate or spend the entire time with his head buried in my shoulder. I never know what the day will look like!


  4. The big deal here (from my POV, anyway) is that you didn't have a meltdown or a freak-out or even a solid "Not-Doing-It" balk when you arrived at the rides--that's a wonderful indicator of progress. Max is dealing with a "whole lotta shaking going on" way better than last year, and that's great news and a big step forward! I wonder if the stem cell treatment is having an impact on his ability to manage a load of sensory input?

    Kids sometimes just like what they like, they feel safe with "the known," and don't always want to expand their horizons as fast as we might like. They can be little farts, set in their ways about everything from foods they like to clothing choices ("You're not gonna wear that old thing AGAIN, are you?") to amusement rides. It seems that Max likes CARS, and he especially loves PURPLE cars. He's got discriminating tastes in his amusement activities, and that's just swell for him. I'll bet, though, if there were a purple airplane at that place, he'd get interested in that ride!

    Sometimes, it's hard to see progress because you're so close, but, as you said, isolating that pointer finger IS a big deal--a HUGE deal--and Max's increasingly sophisticated sense of humor/teasing is pretty doggone profound, I'd say.

    So long as the direction is onward and upward, you've got cause to cheer. And of course, there's a whole summer coming up, with so many opportunities for our little darlings to surprise and delight us with new stuff!

  5. Jacob, my perfectly normal ahead of the game non-stroke kid would have hung out with Max on the cars. Jacob doesn't do rides. Period. I on the other hand could not get enough as a kid. Screamed when they told me I was too small for the roller coaster. I can't handle those rides anymore! :)

  6. This post is dead on!! I measured Olivia's progress this morning when we had to go get bloodwork and xrays done and she didn't shed one tear and she held still. I was overwhelmed with pride...the workers were probably like "OK, weirdo, settle down!" but it meant a lot to me!!

  7. I agree, it is so very important to do this, or we got bogged down in the slowness of development.

    I need to sit down and take note of what changes have come.

  8. Max is looking so much older! He has done some great things this year and that is definitely worth celebrating. Thanks for the reminder that I need to look at what my daughter is doing instead of dwelling on the things she isn't.


  9. So true. Thanks for writing this. Each summer, I wonder how my kids will do at the beach. We've had summers with refusals to touch sand, to go in the water, etc. Last summer my daughter "jumped the waves" with me for the first time in the ocean- and my son built his first sandcastle. These things felt like miracles.

    Is there a SN moms group at BlogHer? I'll be there and would love to meet up.

  10. He He He...that's good stuff, Max! Keep it up! I think we are all guilty of that, Ellen!

  11. I can't get G to go on the tamest ride. He's the biggest wuss.

  12. I know, Max is looking older these days. Time to break out the wrinkle cream.

    Felicia, who knows why he's made so much progress; maybe it is the stem cell therapy. I'll take it! I'll take it!

    Tiffany: AWESOME!

    Varda and MyMomShops: There is no specific group for moms of kids with Special Needs, to my knowledge. But now there will be!!! I'll put up a post inviting people at some point and we can pick a place.

  13. That is HUGE!!! He is such a champion! Overcoming! That is a word that came to my mind. Amazing lil guy you have :)

  14. hay going on rides is suppose to be fun not annual max is a kid so his job is to have fun i know you have his best interest at heart but kids need to have bliss (non compartive fun

    ps i am sorry if i hurt your feeling I swear that I did not mean to

  15. AZ, you are so right—having fun is part of a kid's job requirement! Rest assured, although we only go to these one particular rides annually, he does get to go to other kinds and do other fun stuff. Thank you for that reminder!

  16. Wow you are a great mum. I find it so hard have a child with special needs. Every day is a huge battle . As he looks normal on the out side so people expect to behave like his age . Sometimes I get excited over small things and they are huge achievements for me and other people don't understand.
    So I have been trying to create a community where parents can find services for their child and chat to each other on their unique child . Go to


Thanks for sharing!

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