Tuesday, September 22, 2020

All those years of therapy and it's come to this

I started looking into therapy before Max had left the NICU. "Get him as much therapy as you can," the seasoned pediatric neurologist had told us, and we did—it was all we had. I reached out to an Early Intervention supervisor, and Max started getting physical therapy right around when he turned a month old. By the time he was one, he had 10 to 12 sessions of therapy a week including private PT, OT, speech, vision therapy, aquatic therapy, craniosacral therapy and, eventually, hippotherapy (horseback riding) and hyperbaric oxygen treatment, too.

There was nothing we weren't willing to try, as long as it wouldn't pose any harm. 

Max was a pretty cheerful kid who liked hanging out with people and he went along with the manipulation of his fingers, hands, limbs and torso just fine. Horseback riding, he did not love but eventually he got into it. Therapy became second nature to him, a normal part of his routine.  

We were lucky to find amazing therapists, though good and reliable speech pros were the hardest to come by. We were also lucky to find ones willing to come to our house, because I was working full-time. For several years, on Thursday nights, Dave drove Max 40 minutes away to see the most amazing physical therapist who would do things like balance Max on his outstretched hands.  

Time passed by. The days were slow, the years were fast. Some therapists stayed on for a long time. Some came and went, and each time I scrambled to find someone as good as before. When Max was 14 an OT told me she no longer had anything she could offer him, which was a shocker. I'd heard it before: I once had a standoff with a school speech therapist who wanted to quit working on Max's articulation and focus only on app-enabled communication, because she didn't think his speech would progress. It has. Doctors always tell you that therapy is most important when children are young and in the physical and cognitive formative stages, but I am here to say that our children never run out of potential for progress and acing new things, big or small. (See: Max shows us how to swim.)

Max's last OT moved away early in 2020, and finding a replacement has gotten paused by the pandemic. It's proved impossible to find a physical therapist to come to our home, and so he has only had that at school for the last several years. Our speech therapist has been with us since Max was about three years old, and we have a standing Saturday morning session that Max looks forward to—so much so that he insisted we do it during our recent RV trip.

We were warned, when Max went into high school, that he would get considerable less therapy than before. That's been true, but I pushed to get him an extra PT session there. He has that, speech and OT two times a week each from school, plus one private speech session a private music therapy. They're all being done virtually.

You know how some people dream of winning the lottery and getting a giant new house, a yacht, a personal chef? Me, I'd hire a coordinator to manage all of the therapies. 

Max has been a champ about doing therapy online. He'll hold onto a chair and crouch to do knee bends. He practices folding up paper with the school OT. He enunciates words with his speech therapist and even holds a chewy tube in his mouth and bites down on it for oral-motor exercises. 

Cut to last Friday. Our sitter was over as I had to catch up on work. Around 1:15, I texted from upstairs to remind her that Max had a make-up session with his school PT. 

"No, she cancelled," she wrote back. "We're going to the park."

I emailed the PT to reschedule. That's when she informed me that Max had emailed her to cancel the session. Wait, what?!

Oh, yes. She sent a screen shot of his email. Evidently, he had reached out to her at 11 a.m. to say—spelled exactly as he wrote it—"I'm going to Cancel today I'm going to the park after school."

She wrote back telling him to have a great day and weekend and that she'd see him next week, which is the email the sitter saw and mistakenly assumed the PT was the one who cancelled.

I was curious, and I checked Max's emails. (Bad, bad snooping Mom!) Evidently, after he sent his first email he'd had a pang of guilt and a minute later he messaged "I'm sorry." And then, after she replied, he wrote back to say: "OK thank you you are the best."  

We had a little chat. Max explained that he didn't want to have therapies on Fridays, and I totally got that—who doesn't want a day off? I told him that once in a while, it might have to happen if a therapist needed to miss a session on another day, and he grudgingly agreed that would be OK. 

So there you go: Max took it upon himself to type a message to his physical therapist and cancel a therapy session because he wanted to go to the park instead. Then he charmingly thanked her. Then he advocated for himself for having a day off. 

And that, my friends, is what I call PROGRESS.

13 comments:

  1. This brought tears to my eyes - tears of joy! You are doing it right, Ellen (& Co.) and Max keeps proving it.

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  2. Some of our kids will never meet all of their goals. And that is OK. The hard part is determining when enough is enough and to let them just be a teen. I know my son works very hard at school. Then there is his after school program that he attends everyday (so I'm not an unemployed single parent). He is tired when he gets home. Right now we are waiting for horsemanship to start up again.

    It is so cool that Max was able to take charge and let the PT know (and ultimately you). This is a very important skill. It makes me smile knowing he can do it.

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  3. oh wow this is amazing, and involves so many different skills!

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  4. Ellen….
    Max truly is The Little {Fire} Engine That Could!! :)
    Peace and Love, Mary Lou

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    1. P.S.
      I absolutely LOVE Max's s'mores T-shirt!! ;-D

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  5. Just having that ability to go for his own needs (and knowing to give "advanced" notice to a provider for cancelation!) is so huge. I hated going to PT as a kid even though I really liked my physical therapist. It was taking time away from me just being a kid and I felt singled out. We eventually stopped it with the agreement that I would go in for periodic assessments. Sounds like Max has come to a similar agreement-he might not like it but he's okay with the Friday sessions happening occasionally. Sounds like he's well on his way to developing the skills he needs to be independent!

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  6. Awesome. This is progress. And it made m smile super big. Congratulations to you all.

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  7. This is HUGE. Way to go Max!


    I do recall an aquatic therapist (PT in a pool) suggesting, after several years, that it was time to "let him be a kid" and reduce the number of therapies/week for my son. It's a tough call to make.

    No matter if formal therapy continues, I remind my son that many big gains are still to come between ages 20-30.

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  8. This was very moving and really hit me on a gut level. Self advocacy is our number one goal, and having you illustrate Max’s progress here is stunning and gratifying. Thanks for sharing. Happy New Year.

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  9. I would agree that it is progress! Way to go mom and Max!

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  10. This is a wonderful story! That is great that he was able to articulate and advocate for himself. Tremendous progress indeed. Way to go Max and mom!

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Thanks for sharing!



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