Wednesday, August 21, 2019

When your child with disabilities regresses

Educators talk about the summer slide—a decline in reading and other academic skills that can happen when kids aren't in school over the summer. Max has never had learning setbacks as a result of going to camp for the better part of the summer. This year, though, his ability to navigate stairs seems to have suffered.

At school, Max walks up stairs upright but at home he scampers to our second floor on his hands and knees, which is how he feels most stable. Since coming home from camp he's been getting stuck a lot; he'll get halfway up, then just not able to move forward. This started happening a few months ago, and I figured it might have something to do with getting taller—using his hands and knees is now more awkward.

But the other night, Max stood at the top of the stairs after his shower. And he stood there. And stood there. I could see him trying to move one foot down, but he was hesitant to take that first step. I was shocked. The boy who typically traipses downstairs to the living room when he's up in the morning before us all suddenly couldn't go downstairs on his own. I gave him a hand, and wondered if some of this may have to do with his muscles getting tighter. Max has four-quad spastic cerebral palsy, and as he grows his tendons are at risk of getting tighter. I also wondered if perhaps his muscle memory had regressed and he needed to relearn how to navigate stairs down and up, and get his confidence back.

Maybe it's all of those. I booked an appointment with the orthopedist for two weeks, until which time I will flex my worrywart muscles. I'll also be reaching out to his school physical therapist as soon as school starts, and maybe consider adding physical therapy back into his mix of home therapies.

Max's physical progress has been hard won. Nothing, and I mean that literally, has come easily to him, from the time when he was a tot and the Early Intervention physical therapist spent months showing him how to crawl so he could build up arm and leg strength. I can still vividly recall the glee I felt as I watched him walk up stairs for the first time when we were on vacation in Vermont. I've never taken Max's ability to move around for granted—just a few months ago, when I first noticed him get stuck on the stairs, I felt a flash of gratitude that he was able to do it all. And now, I feel pained that he can no longer handle stairs, and terrified that he will fall.

Max seems unperturbed about the stairs situation. This morning, I heard him wake up. He walked into my room. "Do you need some help going down the stairs?" I asked. "No, I'm OK," he said and left. And then, he came back. "I'll walk you down," I told him, and I did. As scared as I am, I felt major relief that he knew to ask for help. 


  1. I know it's hard to worry about why Max might be suddenly having difficulty but honestly his willingness to keep trying AND then evaluate and come back for help is huge. It's a great combination of independence and maturity. Any chance he fell or almost fell down stairs? I have pretty bad mobility and got really freaked out by escalators as a child after almost falling down one. Stairs also make me nervous because I know I can fall easily. Or perhaps he's sore from everything he did at camp? When I have been using my muscles a lot they do a weird thing where they will just stop working mid use. I don't have CP (besides a brief misdiagnosis) but I imagine that could happen to anyone with weakened muscles like me.

    Best of luck, I hope there is an easy fix or workaround!

  2. Aw, so stressful for you -- I'm sorry! I do wonder if getting taller is a factor, as you suggest. I was a serious Little League player as a kid, and one year I grew like 5 inches and I could not, for the life of me, remember how to slide into a base. My body had just KNOWN what to do and now it didn't. Like, what limb did I move first, how did I lean, how did I transition from running to sliding...what was second nature was now baffling and intimidating. Unlike Max, though, I was too scared to deal with being scared. (And frustrated.) I quit.

    Given Max's determination and general sunniness, I'm sure he will get through this.

    (Also, OMG I missed the Vermont stairs video -- I love that you only get a hint of his face but he is BEAMING. And he gets ambitious on the top few steps at the end!)


  3. Stairs are hard for me I just make sure there are banister to hold on and if I don't have the coordination that day I don't go down

  4. As I have gotten older, my physical ability has changed from what it was when I was younger. This is normal as we grow older.

    For the past year I have been going to outpatient rehab for OT/PT because the pec muscles are overused because of me walking with crutches. My way of mobility has to change with the increase of stiffness and loss of ability to move as easily.

  5. What a difficult and unexpected summer slide.
    On a good note, there is some newer research that says the academic summer slide really doesn't hold true. Since I'm retired, I didn't read it 🤣🤣. Regardless, your experience has shown summer school isn't in Max's best interest! I think it would be hard to find the child who doesn't need the time to relax, explore, enjoy, rather than undergo what feels like the punishment of somer school.

  6. Max may need an eye exam. It could be a visual perception issue.

    1. That is good thinking outside the box that I wouldn't have thought of


Thanks for sharing!