Post 69: When They Say There's Nothing More to Do for Your Child
"Oh, you got her. I'm sorry. With her, it's just maintenance."
I was standing in front of my instructor with tears in my eyes when she said those words. It was 2002. I was in New York, halfway through an intensive training I had wanted to take for years. And in one sentence, a little girl I had just met was placed in a category that, back then, meant there was nothing left to build.
I still remember how heavy that sentence felt.
Maybe someone has said a version of it to you. The words may have been softer — we'll focus on comfort now, let's keep her where she is, he's plateaued. Or maybe nobody said anything at all, and you just noticed the appointments getting shorter and further apart.
If that's where you are today, I wrote this for you.
Before The Story
You've probably given this years of your life. The drives across town. The exercises at the kitchen table. The waiting rooms. The equipment that took over your living room. The nights spent reading because you wanted to find the one thing everyone else had missed.
And then someone looks at your child and tells you, kindly, that the goal now is to keep things from getting worse.
For many parents, what comes first is grief rather than anger. And right behind it, a quiet question that keeps you up at night: Did I miss something? Did I start too late? Should I have done more?
You didn't miss anything. I want to tell you how I know that.
What Happened In New York
In 2002 I traveled to New York for my NDT training — Neurodevelopmental Treatment, the Bobath approach. It was eight intense weeks. I had already been working with children with cerebral palsy for about five years, which was a requirement to be accepted, and I arrived hungry to learn.
The method was beautiful in its logic. You choose a motor function — reaching for a toy, sitting, taking steps with a walker. You break that function into small components. You work on each component. Then you put it all back together, and by the end of the session the child does that function a little better.
For three weeks I practiced on dolls. I studied. I took notes. I was so excited.
Then the children arrived. They were volunteering for free therapy so that therapists like me could practice. I was given a little girl who was deaf, blind, and had spastic quadriplegia. Her body was very, very affected.
I looked for the function. I couldn't find one.
Breathing didn't count — the course was about motor function. "Moving better" didn't count either. It had to be a functional goal, something she could do. I went over and over it in my head, and I couldn't find anything to break into parts.
So I went to my instructor and asked for help. And she told me: Oh, you got her. I'm sorry. With her, it's just maintenance.
For the next two weeks I did everything I knew. Soft work. Positioning. Trying to calm the tone. Trying to make her comfortable. I gave her all I had. And I went home with a feeling I carried for years: that I had been handed a child and had nothing to offer her.
She Was Doing Her Best
Please hear this part clearly, because it matters.
My instructor was a good therapist. She gave me an honest answer inside the model we were both trained in. That model measured progress by what a child could do — a function you could see, break down and practice. When a child couldn't show a function, the model simply ran out of tools. Keeping things stable was the only thing left.
I don't know a single therapist who wants to harm a child. The physiotherapists working with your family today are doing their best with what they were taught. I was taught the same thing. And for years, I gave families the same kind of answer — maybe not with those words, but in how I planned my sessions and in what I quietly expected.
So if you're feeling frustrated with your child's therapist right now, I understand. I'd still invite you to hold that frustration gently. The limit was in the map we were given, not in the people holding it.
Twenty Years Later, The Same Word
I wish I could tell you that sentence stayed in 2002. It didn't.
A few years ago, Lisa — a mom I work with — was told by her daughter's school physiotherapist that because her daughter wasn't improving anymore, she would no longer be part of the school therapy program. From then on there would be an assessment every three or four months, and positioning in the classroom.
Think about what that does to a mother. How do you stay hopeful when the system around your child is telling you there's nothing more to do?
When I shared Lisa's story and my own during a recent class, the chat filled up. One mom wrote that this is exactly how her daughter's therapy is described today — maintenance. Others wrote about the hope they were trying to hold on to. One mother told me she has never lost hope in twenty-three years that she can still improve her son's life.
That word is still out there. And it still lands on parents the same way it landed on me.
What I've Seen Since
That little girl in New York is part of why I kept looking. Years later, that search led me to fascia, and to a completely different way of seeing children whose bodies are very affected.
I want to be careful here, because I never want to promise you an outcome. Every body has its own pace and its own story. But I can share what I've witnessed.
Elise is thirty-four years old and has spastic quadriplegia. Her mom started working with her at home last November. A couple of months ago, her mom celebrated something in our community that made all of us cry: for the first time in years, Elise could wear a dress. Her arms could finally pass through the sleeves. Her body had been too stiff for that before.
A nine-year-old girl in my programs was very compromised. Over time, she was able to have her trach removed. Now her family is working toward feeding her by mouth instead of through her tube. And she smiles. She had never smiled before.
Clara is the daughter of Erica, a friend of mine from school back in Venezuela. In 2017 Erica couldn't travel to Canada and I couldn't travel to Venezuela, so her daughter's therapist asked me to help. I had never taught this online before. Clara had a severe scoliosis. Erica learned the work through a screen and did it at home — she even packed the tools when the family went on vacation. Two years later, Clara's spine looked very different. That little girl is the reason I dared to start teaching families online.
A ten-year-old boy with spastic quadriplegia started with his mom at home. Eight months later, his body looked more organized and better held. In many children like him, I see the tone begin to ease once the body has more support underneath it. The body no longer needs to hold on so tightly just to stay upright.
A woman of forty-eight with cerebral palsy came into my Spanish-speaking group with her sister, who did the work with her. She had stopped walking at twenty-three. Her sister's testimonial is one I will never forget, because she shared that her sister had started walking again. I cried when I heard it.
Lisa — the mom whose daughter was dismissed from school therapy — now does this work at home. Here's how she describes it: it feels specific and purposeful, and it feels soft, for her and for her daughter. She doesn't have to lift and wrestle her daughter through hard exercises. Once they're in position, she sets the timer and they just go. In her words, it benefits her, but it also benefits me too.
And some of the changes go beyond movement. A mom in Italy recently shared that her daughter, about eight months into this work, is saying more words and reaching out to interact with the world more. Parents of children who barely seemed to connect often tell me something that gives me chills every time: He's present now. He wasn't before.
These are the kinds of children I would once have quietly placed in the "maintenance" category without even realizing I was doing it. They are the reason I don't think about maintenance the same way anymore.
Watch Us
So now, when a family comes to me and says they told us there's nothing more we can do, my answer is different from the one I could give in 2002.
I say: give me the most severe one. Watch us.
I say us on purpose. I don't see these children in my office. Their parents do this work at home, with their own hands, every single day. No therapist — including me — can compare to the trust a child has in their mom or dad. Your hands are there when mine aren't. That's why this works.
And if you've been told your child has reached the end of what's possible, I want you to know something: you may have reached the end of what one model could see. That isn't the same thing.
You Don't Have To Accept The Last Word
I think about that little girl in New York often. I wish I had known then what I know now. I couldn't give her more than comfort, and I carried that for a long time.
But she is part of why I kept looking. She is part of why, years later, I walked into the world of fascia and never looked back.
If someone has told you your child is "just maintenance," I hope you can hold that sentence a little more loosely today. It describes the limits of a model. It doesn't describe your child.
Your child's body is still listening. And you are still the person best placed to speak to it.
Ready to Start?
Take your first step into fascia therapy with our short, parent-friendly workshop:
The #1 Fascia Therapy To Improve Torso Control. I teach you the first exercise and how to make the binder so you can help your child today.
Gentle, effective, and easy to begin—no experience needed.
Want to Go Deeper?
If you’re ready to fully embrace this gentle approach and receive personalized support, apply for TheraParent Coaching—our therapeutic coaching program designed for dedicated parents like you.
Includes weekly calls, a tailored plan, and a supportive community.
Apply here – it’s free to explore.
Stay connected and inspired every week.
Subscribe to our weekly blog updates and receive new posts, encouragement, and fascia therapy tips right in
your inbox. So never miss the support and ideas that can make a difference in your journey.
