The summer sun is shining in Missoula and the days are long and full. The garden is a kaleidoscope of perennials and herbs, falling all over each other, coming and going faster than we realize. We're all learning so much as Heath grows into a boy -- a full-on talker! -- with so much to tell us.
If you ask Heath what makes him happy, he won't hesitate to inform you: "Anna!" She is the first friend to engage Heath in long conversations, facilitate his play by helping him along physically, and to share a sense of humor with him. Not only does he enjoy her company, but she has had something to do with his language blastoff over the last three weeks, because he longs to connect with her. These two can play, giggle, and toodle around together for hours.
She's five, he's two, but it works. It's a great joy to see Heath discover his first friendship based on shared hilarity and companionship. They enjoy baking, swimming, drawing, swinging, sliding, yoga, learning letters, looking at storybooks, and creating elaborate make-believe games where a dirty sock can become a magic unicorn.
Here's a video from their pretend wedding in mid-May. What a handsome bride and groom!
Heath is also sweet on Gia, Anna's little sister. Gia used to intimidate him with her exuberant pats, kisses, and hugs, but last time we met up, he dove in and hugged her first! We feel so lucky to have the girls and their parents, Daria and Doug, as friends. Here are the three buddies on a country walk in Rock Creek.
We've been celebrating -- and laughing our butts off -- as Heath's speech has lurched into gear in recent weeks. Two-year olds can become adept almost overnight at specifying their wants, needs, and burning questions. ("Where is Sally?" "Want to go outside right NOW," "I love Grandma and Grandpa." "Bill -- no hair!?") Of course, they melt down the next minute when a mumbled soliloquy is misunderstood. But at bedtime he is happy to join in as we talk about all that's happened during our day. ("Library....Cat in Hat! Saw play. Dancing and singing and running!") His sense of humor has kept pace and he slings zingers at dinnertime with his dad's impeccable comic timing. ("Grandpa's the BOSS!")
Heath kept us laughing during a wonderful trip to Billings and Lewistown to see family. He got to snuggle with his Great Grandpa Monty...
...take morning walks up the hill on Grandpa Tom's back,
...get smooches from Cousin Elle Lee,
...and spend his spare time pushing the Swiffer around. And around. And around...
Heath loves to zoom about and we are incredibly lucky to live in a time and place where kids like him have beautifully designed equipment that makes this possible. It is also important to get him out of the walker each day to work on independent balancing, stepping, and cushioned falling. It's the only way his body will learn. He is so patient with the therapy program and is getting better and better each day. He can balance well now with just a little manual support below the knees, or even at the ankles if he's mesmerized by a DVD.
Heath's goal is independent walking and I'm 99% sure he will reach it. But I have come to realize that walking is not the Holy Grail I thought it was when Heath was in the NICU. "Will he walk?" was the question on everyone's mind. Now, I ask myself, "Would I rather walk or see the world around me? Walk or be able to feed myself?" These are skills that represent independence as much or more than walking does, but to most of us walking seems to be the defining characteristic of "ability."
Walking is wonderful but it isn't everything! There are remarkable mobility devices out there for those who cannot walk or who would be exhausted keeping pace in certain community settings. For example, Segways are being widely used by amputee veterans...
And even by kids!
One of Heath's occupational therapists, Tamara, runs a non-profit called Eleanore's Project, named after her late daughter. The Project provides custom-fitted wheelchairs, parts, and training in places like Peru, where sophisticated assistive mobility devices may not be readily available. The stories on Tamara's blog illustrate how profoundly lives can be changed in the course of a wheelchair fitting. One Peruvian mother carried her 17-year old daughter for three hours to catch a bus to see Tamara and her team -- and missed the bus. Incredibly, she did it again the next day, and it was all worth it.
I have enormous respect for Tamara and she has led me to examine my preconceptions about assistive mobility -- wheelchairs in particular.
To oversimplify a bit, there are two schools of thought when it comes to wheelchairs: one says that they keep might-be walkers from reaching their full physical potential, affect their self-image, weaken their bodies, lower their confidence in their abilities, and represent a kind of "too bad" capitulation. My prejudice, I will admit, has been with this side for quite some time.
The other school of thought says that kids can choose for themselves among a range of mobility options without compromising their health or their potential. This side points to studies suggesting that kids who only need walkers and wheelchairs for a period will eventually walk out of them, and that others may learn to walk while still choosing to use wheelchairs at school or to cover long distances.
One cogent argument for this is that school-kids with walking challenges may be working at near-maximum aerobic capacity just to get to class. Naturally, they collapse in exhaustion once they get there and are less able to focus and learn than peers who did not run the equivalent of an 800 meter dash on the way to Trigonometry.
Tamara told me how some physically-challenged kids feel so intensely pressured to walk by parents who perceive wheelchair use as a failure that they sustain damage to their fragile musculo-skeletal structure as a result -- not to mention fear of rejection. What a tragic outcome. As I travel within the subculture of disability as a relative newcomer, I'm embarrassed by how disabled I have been by narrow, Hollywood-fed assumptions about what constitutes "triumph" for those with bodies different from mine.
I must also admit that our experience with Heath's feeding difficulties has made me paranoid about low expectations, for in that arena the system failed us. We accepted the g-tube as an "adaptive device" and acquiesced dutifully to therapeutic approaches that were well-meaning but failed to access Heath's innate abilities. He would likely still be on a feeding tube today had we not searched for a different approach and contacted a German doctor who saw potential in Heath that others did not. Even though Heath had never eaten before and had few oral motor skills to speak of.
Someone has to have the vision, to see what is possible and how to get there without causing harm...
Heath says, many times a day, "I want to WALK!" Zsuzsi, our smart and sober Conductive Education therapist from Hungary, has great confidence that he will get there. She draws a clear road map for him: probably two more years of painstaking daily therapy carried out largely by us, leading to the ability to push a ladder back chair across the floor. Then he will move to walking with two tripod canes, then one cane, then none.
Other members of Heath's care team see him as a candidate for wheelchair use, or back-up wheelchair use, in the future. Rather than getting uppity and offended by this expectation, I have had to accept that there are different views out there, all well-intentioned and largely informed by cultural differences which are actually quite fascinating.
In the US, we have a therapeutic model based on weekly, one-hour appointments, which is driven not by therapists' desires but by the requirements of insurance companies and parents' daily schedules. My perception is that therapists see parents as their customers and are hesitant to burden them with potentially guilt-inducing "homework" -- i.e., a regular home program to be carried out for an hour or more each day. American kids attend schools where classes run on a strict schedule, hallways are vast, and room changes may be made hourly. Our relative affluence and many social safety nets make assistive mobility a realistic option for kids who are having trouble keeping pace.
In Budapest, there is a different system -- not necessarily better, but very different. Many kids with cerebral palsy attend school together at the Peto Institute, where Conductive Education therapy, movement, and independent living skills are integrated into every moment of their school day. Parents are expected to follow a home program and are firmly warned not to shirk the crucial duty of helping their child become as independent as possible. Kids who might be in wheelchairs in the US are walking the halls (slowly, in many cases), stepping gingerly down stairs, and working harder to meet higher expectations. There is more hands-on support for each child. There is less sophisticated equipment and technology available.
Fly down to Santiago, Chile, and you find Ramon Cuevas. In 1972 he began using a set of cheaply constructed wooden props to help kids with movement challenges become walkers. His approach is unlike anything I've ever seen -- placing kids in demanding positions requiring strength and balance while providing the least manual support required. He also allows the children to fall -- in many cases thousands of times, into his arms, before they learn to rise up on their own. This tedious process is exhausting for child and therapist, may take years, and cannot be implemented in one hour a week. Parents are carefully taught to work with their kids during two 45-minute sessions daily. The results may not be miraculous, but they do demonstrate what is possible for some whose chances of walking were deemed nil by the US medical system.
I can't embed the video here, but Teya's Story says it all. It slays me, in fact. How lucky for Teya that her mother found Ramon in his little office in Santiago with his wooden boxes and his altered sense of time -- slow, patient, meditative, allowing for the seemingly irrational faith that Teya's ragdoll body could grow strong and master gravity at last. Walking is not possible or advisable for every child, but the look on Teya's face tells me that, for her, it has been healthy and life changing.
So where does all this leave us, and Heath? I don't want to chase miracle cures around the world, grasping desperately, insisting on specific outcomes. On the other hand, my intuition says that leaving Heath to his own devices, or the devices of the system as it stands, will not take him as far as he wants to go. So we are groping our way forward, using Zsuzsi's methods, books, YouTube videos, worksheets from Hunter and Amy at Rehab without Walls, improvised equipment, advice from PT Paula and OT Ed, and our own instincts and discoveries about Heath's body and all it can do. We try to coax him, increment by imperceptible increment, toward greater skill and independence.
Paradoxically, the better we all get at this, the less any specific outcome matters. I don't worry for Heath like I used to or fixate as much on future scenarios -- things he may or may not do. The more I travel as a privileged visitor in the world of the physically challenged, the more I realize there is more "wrong" with most of us "normal" types than with those prevailing in spite of our judgments. We are so easily unsettled, so nervously preoccupied with what we think perfection looks like.
When Heath gets older and grasps the magnitude of his challenges, I have no doubt he will pick up the ball and run with it, so to speak, tackling his therapeutic program with determination and focus and reaching his potential as he defines it for himself. He is perceptive, sensitive, sometimes easily hurt, but his outgoing nature and sense of humor will help him bridge the gulf between himself and those who know less about the path he is walking. In the meantime, we are grateful for all we are learning, all those we meet on the journey, and all the luck that helps us along.