Tuesday, May 31, 2011

The progress I never think about (that happened on its own)

Like many parents of kids with cerebral palsy, I'm very focused on Max's physical and cognitive progress.

The Botox shot in his right hand has done a nice job of loosening it up, and he's been spontaneously using it to lift more things. Score! The Botox to his salivary gland hasn't had a real effect on the drooling, though, so we'll have to consider other options. Tomorrow, the serial casting starts. There's no purple kind available, I've been told, but I've got a bunch of Purple Sharpies. I just sent out Dave to buy Max a new purple truck to distract him. "If there's no purple truck, just find anything fun that's cool and purple," I said, and so Dave is currently on a purple hunt in Target.

Max is also progressing with reading, and getting into spelling. The other day, he pointed to the letter "g" in a sign and then to my green shirt. He was telling me he knew "green" began with a "g." I'm loving it. I'm high on it.

So I've been all sorts of focused on Max's muscles and limbs and brain power. I haven't given much thought, if any, to his emotional maturity. I just couldn't let myself get concerned about it—too many other worries on my list. It was something I figured would happen over time, and it has.

In the past year, Max has grown less fearful of visiting new places and trying new activities. He gets upset when I tell him he's misbehaved. He gives his little sis this "What's your problem?" look when she's having a tantrum. He gets concerned by crying. When my mom called in the middle of the night a few months ago to tell me that my dad had died and I sobbed, Max was there, and he couldn't stop kissing me.

Over the weekend, we were at Max's favorite place in the whole wide world, a beach condo we go to during the summer. Max has, historically, wailed whenever we've left. Perhaps you've heard him? He'll traditionally start the second he sees me packing up our bags, and not let up till we're a half hour down the highway. It makes going home so pleasant.

Only here's what happened this time around. It started when I put a packed bag filled with the kids' clothes in the kitchen, and stepped away for a minute. When I came back, it was gone. I looked in the bedroom. Max had dragged the bag in there and was quickly tossing clothes into an open drawer.

"Max!" I said. He looked up with a devilish grin on his face, and then we both laughed hysterically.

When we drove away, Max got a little weepy. "I know, Max, you don't want to go home," I said. "Me either. We'll come back soon, OK?"

And just like that, he quit sniveling and nodded his head.

Max has fallen a little behind with his walking because of his tight right foot. He's moving ahead with the emotional maturity.

A few steps forward, a few steps back: That's how it goes, right?


  1. I love this post--it's beautiful and sums things up so perfectly.

  2. Agreeing with Katy. (This time, okay?)

    I'm not so sure I agree that a few steps back is necessary or always, though.

    Paying attention to every detail of child development is, well, not typical, eh? We are bound to miss a step here and there while looking in another direction. Insofar as his foot tightening - I see that as unrelated to other developmental accomplishments - but tightening occurs with physical growth. Time for new support to his right foot?

    Big congrats to Max and you on his maturing emotional behavior!


  3. I tell u ellen with all the progress max is making I think it is time for him to be in inculsive ed

  4. Preach it, sistah, preach it!!!!!!

  5. To purplefy Max's casts all you need it vet strapping tape!
    It comes in a stack of colours (including purple) and it sticks to itself rather than anything else so you can keep on reapplying!

    I use pink vet tape to cover my wrist splint and make it fun and less medically scary when I'm working with my pre-schoolers.

    Just ask at your local vet or petshop - it's only about $4!

  6. GREAT idea about the purple tape with the serial casting, Hyper!
    Our hospital (UK) does purple casts and red and blue and pink I think and it really helped with Ashley's SC.
    As to the progression thing, I think it's a part of all kids learning that they plateau and fall back in different areas (ask any teacher when the kids go back after summer break).
    Purple Spaghetti Max is fabulous and adorable and definitely moving in the right direction :)

  7. That's how it goes and it is perfectly normal. We get one thing, something else takes a backseat for a little while. Well done to Max for beginning to read, that's fabulous.

  8. I am the mom of a soon-to-be-17 boy with autism, and I read your blog faithfully. There's always good news/bad news, isn't there? We are AWESOME moms!

  9. I remember reading on his website that Dr. Nuzzo in NJ does something with the issue of extra saliva. We met him for SPML only so I don't have the details. He's weird but that brilliant sort of weird.

  10. Why did you entitle today's entry, "Parenting special needs..." rather than "Parenting children (or kids) with special needs?" I am not trying to criticize you; I really would like to know.

  11. I really give very little thought to emotional maturity either. Max is 3 years older than my son so it's encouraging to read along as Max moves further. Looking forward to the day that my son gets upset when he is being told he is misbehaving. Well, I guess he already doesn't like that, but it doesn't mean that it stops him at this point.

    Loved the "g" and "green" story and Max unpacking your bags.

  12. Progress... it's about all we can ask for.

  13. Barbara, I do think that raising kids with special needs is all about juggling their progress, their non-progress and recession. It's not that they tie in to each other; I'm talking about how you handle it as a parent. As Peggy says, "There's always good news/bad news." And, I will send along your congrats to Max!

    AZ, he is making progress. But our district is not the right place for him now. I am going to consider it for the following year.

    Hyper: Thank you for that hot tip on vet strapping tape! The pet store has it, in purple! (You should have heard my phone conversation with the store owner: "Do you have it? Good! Do you have it in purple? Will it work on a kid's cast?")

    DDerby: His official name is currently Spaghetti Sauce Max. Purple Spaghetti Max is SO six months ago.

    Chelsea: I think that doctor does surgery that reverses the drool. I don't know if I'd go the surgery route now... Sigh. That's a whole other post.

    Anon: Mistakenly published that, it was shorthand! Intended hed now above.

    Megan: A-MEN

  14. Thanks so much for posting this today! We just got the news that we'll need to go back to AFOs, even though I had hoped (!) that we were done with them.

    You really helped me to focus on the other things that my son does well.

    Perfect, Perfect, Perfect timing.

    Thank you!

  15. I'm glad you found purple tape. i was going to recommend checking a craft store. They have some pretty wild colors of duct tape for crafts these days. I bet they'd have purple. Kyle has some black duct tape with yellow flames that he loves. Regarding the drooling...Kyle tried botox twice and it didn't really help him as much as we'd hoped. He's on .125 Benzptropine and I think it helps a little. Last Neurodevelopment appt one of the nurses said to try orange extract on a q tip in the four corners of the mouth. We haven't been too compliant with that, so I can't tell you if it works or not.

  16. Giant leaps forward and a few steps back. :)

  17. You're geared up for serial casting... we're on the eve of lengthening surgery. Right leg too. Best of luck with the casting, it took some time for our daughter to rebound after the casts came off. I have no idea what recovery for this surgery will be like but I'm sure its not going to be a walk in the park. But what do ya do??

  18. Alison, I hope the AFOs do their job! Julie, I had purple tape success! Mo, headed over to say hello. And you know what? Hopefully, this will mean BETTER walks in the park for both our kids.

  19. Way to go Max!
    FYI- Botox in my daughter's salivary glands didn't do well enough and I asked the doctor to increase the dose. He is going to do 50% more in a couple weeks for our second try. We'll see if this does the trick!

  20. That's where I can get really excited about Olivia's progress...when I think about her emotional progress. :)


Thanks for sharing!

Related Posts Plugin for WordPress, Blogger...