Gifts of Physical Therapy. Gifts of Down Syndrome.

I broke my foot in college in a gymnastics class and, for the first time in my life, attended physical therapy after recovering from surgery to fix the bone. This experience led me to volunteer for the rest of my college career at a local PT office, where I mostly chatted with people as they warmed up for their session. But I had never seen pediatric therapy, never even thought about the fact that some kids need PT, before meeting Cooper.

Why does Cooper need therapy? Low muscle tone. From what I've read, every person with Down syndrome will have some degree of low muscle tone. This affects their ability to achieve certain milestones related to their motor skills, and having intervention in therapies can help a great deal.

I resisted starting Cooper in therapy when he was first born. Another mom told me to look into "Early Intervention," but in the back of my mind I hoped that Cooper wouldn't really need help. As a mom whose first child did not have any delays, and as a mom who single handedly taught that oldest child to read, and read very well, I wanted to be able to handle whatever delays Cooper might have myself. I had to face the fact that maybe I couldn't provide everything that my child needed, and outside help would be necessary.

Today I'm happy and grateful to accept that help! Here is what Cooper's journey with therapy has looked like so far.

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Cooper is about four months old when I finally make the call to our local Early Intervention office. Early Intervention (EI) is a federally mandated program that each state has to provide for children with developmental delays age 0-3. This program provides services like physical, occupational, speech, feeding therapy, and more, depending on the state. I reluctantly set an appointment for the EI team to come out and assess Cooper to see if he would qualify. They show up to our house, and I'm still a bit of a mess from the surprise diagnosis. The whole appointment is a blur. I don't understand the terms they use, the whole program is overwhelming and confusing, and I'm just trying not to cry until these people leave.

Cooper isn't crazy "behind" as a four month old, but he is eligible for their services because of his diagnosis of Down syndrome. I begin seeing their occupational therapist whose name is Mary. I learn from her that at this young of age, physical and occupational therapy often overlap so there isn't a need for both OT and PT appointments. She helps us work on rolling to both sides, sitting without support, and makes sure he's feeding and swallowing well, among other things.

I also learn that Mary has been in this position for over thirty years; I come to trust her deeply and take her word as gospel because she obviously knows a lot more than I do about children with developmental delays. One day I ask her about Cooper's crooked fingers. His index and pinky fingers curve inward slightly. It's the first feature I noticed about him after he was born. For whatever reason, I fixated on this "difference" for months after Cooper was born and I worried it would hinder his development as he grew. Could he hold a utensil, a crayon, anything? She always answered my questions gently, never making me feel silly for questions that might have been strange. Mary looks at Cooper's fingers and tells me that we will just have to see as he grows what happens with them. With each appointment she is a sounding board for me. Not only is she helping Cooper grow and develop, she's helping me do the same.

Once Cooper is able to move around a bit more on his own, I want to start physical therapy. It's explained to me that PT will still overlap quite a bit with OT, but I want to begin as soon as possible. I guess I'm not very patient. Cooper has not ever wanted to put weight on his feet, so in my researching I decide that water therapy might be good to try. I find out that water therapy is an option with our EI physical therapist, and I request an appointment. I meet the PT Kim for the first time at the little pool near our home. She gets in and out of this pool for a couple hours a few times a week for these kids. I can tell she loves her job. We attend water therapy for several months before Cooper starts resisting getting in the water with Kim. But we had reached our goal. At 17 months, Cooper is able to bear a little more weight on his feet and starts pulling himself to stand.

While Cooper works with both Kim and Mary at home, I find a local outpatient pediatric therapy office and get Cooper on the waiting list for their services. Yes, there is a waiting list for kids who need therapy. I'm not sure how it looks in other areas of the world, but it's maddening to me that kids have to wait for help. I assume in most cases these offices are trying their best with what they've got, and the need is sometimes greater than what they can offer, but kids should not have to wait! I digress...

After waiting a few months, Cooper gets established at this outpatient facility. To me, it feels important to see as many therapists as we can and get as many opinions and points of view on Cooper's development as possible. This is a great approach if you have the time and means and mental capacity. On more than one occasion, I got appointments mixed up or double scheduled. And I definitely burned myself out trying to manage all of this. But, by the time Cooper is 20 months old, we see an occupational therapist, physical therapist, and speech therapist at this office, each one about every three weeks. (I will save speech journey for another blog post.) With these appointments, plus home therapy every couple weeks, plus just living, you can maybe see why burn out is a real possibility.

At 14 months, Cooper crawled for the first time. At 16 months, I ask therapists for tools to help Cooper walk. The EI office gives me a baby walker. After a couple months, I want more. They bring an ancient pediatric walker that is so big, Cooper can not maneuver it whatsoever. Our friend's son who has Cerebral Palsy used a little blue pediatric walker when he was younger, and they willingly borrow us his walker. By 22 months, Cooper is trying for the first time in his life to stand up on his own.

Every night before bed, our family plays the “ball game” where Cooper stands with the help of Mom or Dad and takes as many steps as possible on his own across the front room. At first it's only a step or two, and the steps are so unsteady it seems we will be in this phase forever. When he takes all the steps he can and falls to the floor, we celebrate by rolling several balls around the room and laughing as the balls hit into each other. This is highly motivating to Cooper, and the laughter helps us all take some weight off our shoulders. After all, most other families we know aren't working all day to help their child walk. It can get overwhelming. He works up to ten steps before falling down. And then eventually across the whole room. 

Once he can walk across the room, he really starts taking to the walker. We take that little walker everywhere! To therapy, to the park, to church, to the pumpkin patch, even in the mountains! We make our home more accessible so he can use the walker throughout our house. I start leaving the walker outside his door in the morning, encouraging him to use it instead of crawl. I will never forget the first time I saw him come around the corner using the walker without any help. I’m not sure there’s words to describe the joy and pride that filled my heart that day.

Seeing how much Cooper wants to be on his feet, I want to do more to help him. At 23 months, I enroll him in an intensive physical therapy session at a local office called Now I Can. I'm on the fence about this. What if it doesn't help and we spend all this time and money? Some friends had done a session before us and had a very positive experience, and it gives me the courage to try. We take Cooper to this office for three weeks, for two hours a day, five days a week. He makes huge strides in his strength and balance while in this program. He's able to stand up independently now, but hasn't quite figured out walking without the walker. 

A month after the intensive PT, Cooper's baby brother is born. And the day after we bring baby home, Cooper stands up and takes independent steps without his walker for the first time. He’s been walking now for nine months, the same amount of time his brother has been with us. He’s almost to where he can run! Which is exciting and also terrifying because I now have two little boys to chase after.

Watching Cooper fight for these milestones has been an amazing journey. I know at times he gets frustrated, but he works hard and teaches us to make the best of what we’ve been given. He is a great example of facing challenges with a smile and with fun. He is teaching that to me, and I know he will also teach it to his siblings and his friends.

I never expected to be so versed in the world of pediatric therapy. A trip to the park is no longer just a fun outing, it's an important physical therapy session. Reading books and singing songs are no longer just bonding time with Coop, they are vital speech sessions. Shape sorters, crayons, toy piggy banks, cars, puzzles, blocks, toys of all kinds are no longer just cutesy baby toys, they are tools to help Cooper gain cognitive strength and fine motor control. It can feel like a staggering amount of work to do. Sometimes I wish I didn't think about how every activity we do during the day could be or should be adapted to help Cooper practice some skill. But having these things in the back of my mind also gives me purpose and resolve in my every day life. A purpose and resolve that did not exist before he came into my life. And that is one of the many gifts Cooper has given me.

One of the many gifts of having a child with Down syndrome.

Cooper warming up at his Intensive Physical Therapy Session November 2024