If you were here for our last post, you know that walking is much on Heath's mind. And that the best way to help him is much on ours.
A few days after writing that post, I had an intuition to schedule a week of Cuevas Medek Exercise (CME) for Heath in Toronto with Simona DiMarchi, the most highly trained CME therapist in North America. I had toyed with the idea a year ago, but wait times were long and I wasn't sure we should take Heath so far away. This time, lo and behold there was a slot available shortly and Heath was terribly excited to set out for CANADA!
As I wrote in my last post, I was profoundly moved the first time I saw this video of Teya learning to walk with CME founder Ramon Cuevas. There was something intangible in the process that made sense to me. I felt strongly it could tap into Heath's innate abilities, if he could tolerate the intensity and the sensation of losing his balance over and over. I had seen video clips of Simona working with children and felt that Heath would respond to her warmth and confidence.
So, a week ago we left for Toronto! Heath was used to pointing out CANADA on the weather map and was entirely game to board three flights to get there. His enthusiasm was mostly unflagging ("Wanna sit by the WINDOW!" "I see SUITCASES!") We met up with Grandma Marcia in Minneapolis and checked into a small extended stay hotel in what appeared to be the Little Tehran of Toronto, surrounded by enticing ethnic restaurants for blocks around. So far so good!
On the morning of Day One, we sat down with Simona and explained to Heath that she was going to help him learn to walk, like his friends Brendan and Hendrik. His face lit up like a lightbulb and he nodded twice, with great vigor. "Play baseball?" he said, adding to his wishlist of physical capabilities. Heck yes, play baseball!
Heath was so ready to get started he began crawling down from his chair immediately.
He had a hard time that first day, tired from the trip and likely confused about the new approach and the feeling of yet another therapist's hands on his body.
CME is very different from the therapy Heath is accustomed to. Simona gave Heath no more help than was necessary and assisted him not at the trunk or pelvis, but as low as possible on his legs, pulsing her hands to release her grasp entirely, whenever possible. Due to his low muscle tone, Heath has to work extra hard to stay upright, activating a vast array of muscles throughout his body and making split-second neurological adjustments he's not used to in order to maintain his balance. By the end of the day he was exhausted and confused, but Simona said he had done really well. We went back to the hotel and played Bingo with Grandma.
On the morning of Day Two, I decided to show Heath the video of Teya. He was rapt. "See it AGAIN," he said. He watched it six times before it was time to go to the clinic. When we got there, he told Simona what Teya had done with her walker: "Put in the GARBAGE."
"I hope we can put your walker in the garbage too," she said.
Heath worked his heart out that day, at the end of which he took his first independent steps ever -- two, right into my arms.
For the rest of the week, Heath watched Teya's video over and over every morning. He was in great spirits and confronted each new physical challenge with equanimity and surprising patience. When encouraged to do it "just like Teya," he would dig a little deeper and progress a little further.
The last two mornings he said he dreamed about Teya putting her walker in the garbage. His inner world was truly affected by the glimpse she had given him of a way forward -- a way that made sense to him and ended in triumph and independence. "Teya was eight when she became a good walker," I told him. "She started exercises when she was four." Heath insisted he would walk when he was two. What to say? Who knows what the future holds? "Try hard, Buddy!"
Here is a little movie of Heath's week with Simona....
Wow!! We were amazed to see what Heath was capable of in Simona's hands. My mom shot dozens of video clips and I took copious notes on the exercises she taught us. I practiced the last two days, and today Peanut and I took turns doing our home program with Heath. (Yes, I flew back with a 41-pound, bubble-wrapped bundle of CME boxes and boards!) We are excited to see where this approach takes Heath, especially given how well he took to it this week. His strong connection with both Simona and his role model, Teya, will help inspire him as he finds his way forward. Though we can't replicate what Simona is able to do (Hello, biceps? Are you in there?), Peanut and I will get better and better at helping Heath with his exercises, we hope. If all goes well, we will return in six months for another block of intensive therapy with Simona and we'll all learn even more.
In other news, we're feeling the first nip of autumn and Heath is starting a junior preschool two mornings a week at a parent-cooperative where I will be helping out frequently. It feels like we're on the verge of a wonderful new season.
Wishing everyone a beautiful September!