...or rather who's not, unfortunately, because he can't get up our steps. It's Darren Larson, Independent Living Specialist at Summit Independent Living Center here in Missoula. Darren is an activist who has been successful in advocating for an innovative idea called Visitability. Visitability is a national movement seeking to create basic accessibility in all new home construction. A Visitable new home has:
At least one zero-step entrance approached by an accessible route on a firm surface no steeper than 1:12, proceeding from a driveway or public sidewalk
Wide passage doors (at least 32")
At least a half bath/powder room on the main floor with adequate maneuvering space
Adding an accessible full bath and a bedroom on the main floor is even better. Darren speaks in more detail about Visitability here...
I was very moved by this statement on the Visitability website Concrete Change:
...the spirit of Visitability is as important as the list of features. That spirit says it’s not just unwise, but unacceptable that new homes continue to be built with gross barriers — given how easy it is to build basic access in the great majority of new homes, and given the harsh effects major barriers have on so many people’s lives. These easily-avoided barriers cause daily drudgery; unsafe living conditions; social isolation; and forced institutionalization.
When I first heard about Visitability, I wondered if able-bodied people would resent requirements being imposed upon them. Then I learned that the chances that either you, a family member or a friend will be denied entrance to your home due to disability at some point is....90%. Think about it! Visitability means we can stay in our homes longer, and that our loved ones will retain access to them throughout their lives. Over time, the housing base will pose fewer barriers to everyone, revolutionizing social life for the disabled. And it only costs around $600 more to build a Visitable new home, whereas retrofitting an old one can cost thousands.
On Halloween, Heath and his buddy Gia got to join with Darren in making a point about Visitability as the kids trick-or-treated in our neighborhood full of charming -- and almost entirely inaccessible -- homes. If you missed my crowing on Facebook, you can see the NBC news story here: Halloween Reminder Of Proper Access For Disabled.
We loved talking to Darren about his advocacy efforts, which have been mighty successful here in Big Sky Country. Recently the Montana Board of Housing agreed to require visitable bathrooms on the main floor of new and remodeled home construction. Now, all three minimum access features of Visitability are required for ground floor residences!
Darren is continuing to gather testimonials regarding Visitability and barriers that others have faced in this regard. If you have a story to tell, please consider filling out the Visitability testimony guide.
You can also read his wonderful editorial in The Missoulian. This is about more than doorways and ramps, folks: "Visitability is about community. It's about family and friendships. It's about living where we choose for however long we choose. It's about compassion, warmth and dignity. Most importantly, it's about progress as we seek for better ways to expand upon life, liberty and the pursuit of happiness"
Heath, Daria, Gia and I paid a super-fun visit to Darren's office last week to discuss both Visitability and The Playground Project, the all-abilities playground Daria and I proposed to the city, and are now working to raise funds for. I was so excited that Darren offered to run a youth focus group in January, gathering views from youth who have grown up with disability and faced physical and social barriers in traditional playgrounds.
In other news, our family had the most wonderful Halloween ever (after we ditched Heath's walker!). Dressed as a mailman, Heath was only too happy to make his appointed rounds with his lovely trick-or-treat date, Anna.
What fun!! Our real mailman was so kind, he brought Heath an honorary mailman certificate and a keychain from the National Postal Museum, which he's proudly wearing on his mailbag here.
No, not the Skittles! Dad will eat them all! :-)
Junior preschool continues to be fantastic fun -- here are two sweet snaps by Heath's teacher, Jillian....
This one is of Heath in the little playhouse at the Clark Fork School -- which is not very Visitable to anyone over 3 feet tall, but we manage :-)
I'm putting the finishing touches on my interview with 92-year old Ann Morgan and her son Bob, who had a remarkable journey as he grew up with CP long ago in Lewistown, Montana. Medically, it was "the Dark Ages," in Bob's words, but I learned so much hearing their stories of family and community and perseverance with virtually no therapeutic support or services whatsoever. It makes me grateful for all that is offered to us now, and also reaffirms the central importance of all that is close at hand.
Time to admit it. Something has been shifting here at The Crunchy and the Smooth.
I think this blog is becoming less about the inspiring, against-all-odds journey of my special needs son and more about the blundering journey of his mother as she gets a clue regarding this whole disability thing.
It's hard for me to look back on some of the posts I wrote after Heath's birth and during his infancy. Though I've always celebrated Heath's fundamental perfection (at least in every moment when I was capable of being fully present), it's also true that I fogged up the atmosphere with a lot of fear of what he would face and my ability to guide him; denial that any of this was even happening; and wishful thinking that some magical cure or healer would come along as I worked through monumental resistance to his diagnosis at 20 months of age. Especially in the period leading up to the fateful appointment, when we knew what was coming but didn't want to, I was seized with terror for Heath and grief that I held down with all my strength, and that burst out in nightmares and behind-closed-doors sobbing fits. My baby, my baby. Why him? Etc.
A year on, and I'm a little embarrassed at how hard it was for me to accept. While we have been getting comfortable with the CP drill, figuring out effective therapies and celebrating Heath's determination and physical milestones, he's been having the time of his life. I, on the other hand, have been undergoing major rehab where my perspective is concerned.
To make this short and simple, I don't feel heartbroken anymore that Heath has a CP diagnosis. Speaking only for myself, I don't see it as a tragedy, as something to be cured or wiped out, but as a fact of nature, a peculiar thread in the tapestry of reproduction, an interesting glitch in the matrix. Due to the incredibly common incidence of oxygen deprivation to the fetus or newborn, as many as 1 in 400 children may have some degree of CP. That figure is pretty constant across cultures. Though medical error can be implicated in some of these injuries, most are a mystery that is not easy to solve.
Looking at disability broadly, it affects 9 out of 50 people.
So there you go. Disability happens. A lot.
Suffering can be defined as "resistance to what is." Resisting my pain and fear made it worse. Resisting the fact of disability made it worse.
Surrendering to the unknown, to our loss of control, and to my intuition that, in the grand scheme, things might just be profoundly OK, turned the volume way down on the suffering.
Over the past couple of years, several people have spontaneously advised me that I must grieve for my "imagined child," for the non-disabled child of my dreams. Again, speaking only as one special-needs parent among millions, I must say that while I struggled with the fact that Heath would face obstacles, he was never a lesser version of himself to me. For whatever reason, I never had a visual of my idealized offspring, e.g., sprinting through a field of daisies. Heath has always been more glorious to me than any child out of the pages of Parents magazine -- seriously, folks. Not because he is extra inspiring due to his special needs. But because of who he is: sensitive, curious, awed by his discoveries, loving, exuberant, hilarious -- stop me now!
His sweet mouth, big ears, long legs, heavenly eyes and pillowy cheeks.
How he dances, bobbing his head and waving one arm in the air. The way he crawls, with his head on the ground like a fifth wheel. The way he gets two inches taller when he's laughing as hard as he can. How he wields a pen with painstaking care, announcing, "I'm drawing a butterfly" over a page of chicken scratch.
No "imagined child" could top it.
Most of the time, people are unfazed by Heath's little differences. Almost always, their curious questions or quizzical looks are friendly and well-meaning. But occasionally their comments belie an innocent and incorrect assumption that our lives are pitiful, diminished, reduced. That we must be nothing less than heroic to get through it. That it is nigh unto a miracle that I could enjoy my child so. It's easy to feel a bit misunderstood, if not aggravated.
But if it's taken me this long to relax and broaden my vision, how can I expect those with zero disability experience to drop their anxiety and get a clue? Most of us learn about disability from the idiocracies of the media and the schoolyard, where being different is rarely a good thing. So how do we know what to say?
A friend with special needs kids once said to me: "It's not my girls that are the problem, it's the world."
I think I'm finally welcoming myself to a different world. One where it's hugely relieving, yet oddly isolating, to realize that while disability can be a pain in the ass, it is not the end of the world. And it doesn't define anyone -- not remotely.
Throughout the first part of Heath's life, I had two ways of seeing. One pair of specs showed me his perfection, his child soul, trailing clouds of glory, as it were. The other pair scanned for pathology. It fed the traumatized part of my brain that was reeling from his near-death, labeling "issues," juggling prognoses and prescribing all manner of therapies, just like the jargon-filled medical reports that now burst out of a gigantic three-ring binder in my office.
Now Peanut and I know more. We've surrendered to the current and, Hey! It's not so bad. We have hit our stride with effective therapies that make sense. We've learned to take prognoses and predictions with a heaping spoonful of salt.
Now, instead of two pairs of glasses, it feels like I've got a pair of those seamless bifocals. The larger portion of the lens sees Heath just like any other kid; the little part at the bottom allows me to focus when needed on shepherding his physical development and helping him reach his goals. Not "fixing" broken parts. Not labeling. Not catastrophizing. Not predicting.
It's embarrassing to think that someday Heath will learn how I bumbled and am still bumbling along the path with him. Through grace alone and no brains on my part, I am just beginning to glimpse what it's like to observe the overculture from the other side of this fence; how crazy and anxious "normality" can appear to ordinary people living with disability.
Perhaps the experience of disability can even give certain folks an outsider perspective that is more evolved.
In any case, many of us are headed there eventually. The disabled are the world's largest minority group, and the only one we can join at any time. Disability might even be . . . normal.
I only know a little about all this. Heath's challenges are relatively minor. Still, it's easy to get exasperated with a world that worries so much and so pointlessly about sameness. I try to maintain a good attitude and I hope Heath will too.
It must be said that I'm eternally grateful to the generations of people with disabilities before us who got uppity and paved the way for greater understanding, respect and equality. Despite the ubiquity of mindless "retard" and "short-bus" humor, our culture is still more enlightened and embracing of differences that it was 20, 50, 100 years ago. Just look at these t-shirts! What Helen Keller wouldn't have given for one of these, hmm?
In other news, I'm excited to be heading to Great Falls this Sunday to interview a mother in her nineties who raised her son with CP in a small town long ago, when things were quite a bit different. I'm extremely grateful for the opportunity and am sure she will have rich wisdom to share about all they learned on their journey.
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.
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.
Everyone said that spring arrives in Missoula on Mother's Day weekend. And they were right. Over the course of a few days, we witnessed a big blossomy bang.
Heath had been patiently tracking the progress of his seeds -- now we could put them outside.
Our garden, which was covered with snow when we moved in, turned out to be full of tulips and beautiful perennials.
Heath had a few new beginnings of his own this month, exciting ones! Pedaling a push trike, drinking independently, and starting to use a rolling pin with both hands.
Other things weren't caught on camera, like feeding himself 11 bites of food out of the blue this morning! After months and weeks of saying, "No, Mama" whenever I offered him the spoon.
Heath's developmental leaps are inevitably surprising, sudden, a little bit surreal. What just happened in there? I always wonder. We might have encouraged or demonstrated an action over and over for a long time with no apparent response from Heath other than tolerance of our moving his limbs and digits around. Sometimes he recoils strongly from our help, as if to say "I don't WANT to drink from a cup on my own! Don't make me!" And then one day, one moment, he makes the choice to attempt something entirely on his own, for reasons invisible to us yet urgent to him. At those times, he makes the greatest leaps into new territory, more or less without us.
After two years of watching therapists work with Heath, I'm still fascinated by the enormous role played by his own motivation, which is unpredictable, mysterious, and rarely focused on what we think might be important to work on today. The best therapists know how to flow through a program that challenges Heath in key areas (balance, muscle weakness, muscle coordination, conscious control of muscle tone, and learning new motor patterns, plans, and habits) while responding to his own sense of what is important to master, as well as his need to experience fun, variety, respectful relationships, and success. We are grateful to have found Ed and Paula in Missoula, two good-hearted people who give a great deal of thought and energy to planning their sessions with Heath while keeping him laughing, or at least engaged, interweaving and alternating hard work with delightful play, songs, and silliness.
Their work and ours guiding Heath through the movements of crawling, squatting, standing, kneeling, walking, eating, etc., builds on preexisting neuromotor programs designed to unfold like a flower in all developing children. For Heath, these built-in developmental imperatives are fainter and more scattered due to his injury, which creates neuronal communication challenges akin to static on a telephone line. By assisting him over and over, we can reinforce a pattern he can access later when he is ready to try something out for himself. If an action is too hard for him, he will abandon the effort and might not try again on his own until weeks or months later. If it is within his reach, he will try again and again, as he does these days trying to write a letter "M", press cookie cutters into play-dough, put on his hat, or walk while we hold one of his elbows.
What I have learned is that Heath and we are involved in a dance. We lead, then he leads. We attempt to guide, inspire, demonstrate, and challenge in the most entertaining and engaging way possible. And then we step back and he shows us where he wants to go. He is influenced by what we show him is possible. And we are influenced by his intelligence about how all that new territory looks to him -- and how he intends to get there on his own, at the time and place of his choosing. This dance requires that we trust Heath to get where he's going, just as parents of typical kids can trust that theirs will walk and talk. His timetable will be different and his ways and means will vary, but the longer I know Heath the more I am convinced that he knows at least as much as we do about the proper course of his own learning and development.
Maybe because of this, I have given up bribery. It used to be six chocolate chips for six crawling laps across the dining room. Do this and you'll get that. And then I noticed that his intrinsic motivation to pursue crawling was flagging. I was sending him the message, "Crawling honks, therefore I have to give you goodies to get you to do it." I wasn't seeing him flop down to give army crawling his best shot anymore. What good was that?
Reading Alfie Kohn's exhaustively researched book Punished by Rewards made me realize I was treating Heath like a lab rat. Which is not surprising really, since we have been deploying pop behaviorism techniques on children and workers since before B.F. Skinner came along -- he just made it seem more scientific. But Kohn trots out study after study showing what every bored and unmotivated office drone knows: that systems of reward and punishment may bring short term compliance but fail consistently over the long term at bringing out the very best in people -- the most sincerely motivated good behavior, the most passionate learning, the most brilliant creativity, or the most inspired productivity. What people want are not rewards, but autonomy, choice, meaningful activity, and collaboration.
How to discuss all this with a two-year old? Hmmmm. Back to the dance. On the therapy side, we have to explain to him as best we can and as respectfully as possible that activity x or y, which may tire and annoy him, is important to his own goals of getting around on his own. We need to offer him choices whenever possible about how to undertake that activity and even when to let it drop. And we need to be alert to what is meaningful to him on a given day and help him achieve it on his own if possible. We have to let his inner reward system of pure satisfaction work for him. Rather than overwhelming him with praise every time he gets the peg in the hole, we have to sometimes allow a silence in which he can hear his own little fireworks bursts of pride inside. Because that's really where it's at.
Ultimately, it's up to us to put him through his paces as best we can, and up to Heath to make the big moves. No chocolate chip in the world is big or tasty enough to compete with his own primal desire to change and grow. We can trust that desire, we can cheer for it, we can encourage it when it falters, but we aren't the source of it. And he doesn't need us to be. All we can do is find honest ways to connect with his intrinsic desire to crawl (or eat with a spoon or break out of his walker one day), desires which may seem latent at first, but in the end turn out to be more powerful than any extrinsic motivator we could devise.
And maybe we save a piece of our relationship in the process. I worry that in addition to being Heath's primal source of love and security I am also his Olympic coach. It is my duty not to leave his body to its own devices during these crucial early years of ultra-neuroplasticity and rapid growth and development. He will go further with guidance, habit-building, therapy, and strengthening that he would without these things. So, I need him to comply.
If I rely on blatant manipulation as a technique to gain compliance for a week, that's one thing. But if I do it for years, I fear we will pay a price in terms of lost trust and respect. Maybe we won't get as many reps done tomorrow without M&Ms as we will with truthful talk, but maybe Heath's long term enjoyment of exercise and exceeding his limits will be greater. Maybe one day he will surprise me, as he did this morning feeding himself bite after bite of cereal, by saying, "Hey Mom! Let's do weight training!" Or, "I think I'm going to learn to ski." Or whatever he sees on the horizon as his own next possible adventure.
I hope we're making the right call where all this is concerned. Parenting is a balancing act like no other. Sometimes I think there is a right answer: either we're pushing him too hard or we're not pushing him hard enough to reach his physical potential. Other times I think there is no either/or, no way to measure a "best" outcome that doesn't include a sense of rightness, love, trust and mutual respect.
Happily, trusting Heath to forge ahead with his big spirit is as easy as trusting the tulips to pop up in May. They do it because they need to, they want to, and that's what they're made for. Same with parenting (and grandparenting! ) this incredible boy. It just happens. We keep re-orienting, guided by bigger things in turn. Somehow, I'm fairly certain, it all works.
Everyone said that spring arrives in Missoula on Mother's Day weekend, and they were right. In the course of a few days, everything changed with a big blossomy bang.
Heath had been patiently tracking the progress of his seeds -- now we could put them outside.
The garden that was covered with snow when we moved in turned out to be full of tulips and beautiful perennials.
Heath has had a few new beginnings of his own this month -- pedaling a trike, drinking independently, and starting to use a rolling pin with both hands.
Other things weren't caught on camera, like spoon-feeding himself 11 bites of food out of the blue this morning! After months and weeks of saying, "No, mama" whenever I offered him the spoon.
Heath's developmental leaps are inevitably surprising, sudden, a little bit miraculous. What just happened in there? I always wonder. We might have encouraged or demonstrated an action over and over for a long time with no apparent response from Heath other than tolerance of our moving his limbs and digits around. Sometimes he has a negative response, as if to say "I don't WANT to drink from a cup on my own! Don't make me!" And then one day, one moment, he makes the choice to attempt something entirely on his own, unbidden by us, and for reasons that are hidden to us and urgent to him. At those times, he makes the greatest leaps into new territory.
After two years of watching therapists work with Heath, I'm still fascinated by the enormous role played by his own motivation, which is unpredictable, mysterious, and rarely focused on what I think might be important to work on today. The best therapists know how to flow through a program that challenges Heath in key areas (balance, muscle weakness, muscle coordination, conscious control of muscle tone, and learning new motor patterns, plans, and habits) while responding to his own need to experience fun, variety, social interaction, and success. We are grateful to have found Ed and Paula in Missoula, two good-hearted people who give a great deal of thought and energy to planning their sessions with Heath while keeping him laughing, or at least engaged, interweaving and alternating hard work with delightful play, songs, and silliness.
Their work and ours guiding Heath through the movements of crawling, squatting, standing, kneeling, walking, eating, etc., builds on neural motor programs designed to unfold like a flower in all developing babies. For Heath, these the built-in developmental imperative is fainter and more scattered due to his injury, which creates neuronal communication challenges akin to static on a telephone wire. By assisting him over and over, we can reinforce a pattern he can access later when he is ready to try something out for himself. If an action is too hard for him, he will abandon the effort and might not try again on his own until weeks or months later. If it is within his reach, he will try again and again, as he does these days trying to write a letter "M", press cookie cutters into play-dough, put on his hat, or walk while we hold one of his elbows.
What I have learned is that Heath and we are involved in a dance. We lead, then he leads. We attempt to guide, instruct, demonstrate, and challenge in the most entertaining and engaging way possible. And then we step back and he shows us where he wants to go. He is influenced by what we show him is possible. And we are influenced by his passion to blaze into new territory all on his own, at the time and place of his choosing. This dance requires that we trust Heath to get where he's going, just as parents of typical kids can trust that theirs will walk and talk. His timetable will be different and his ways and means will vary, but the longer I know Heath the more I am convinced that he knows a thing or two about the proper course of his own learning and development.
I have given up bribery. It used to be six chocolate chips for six crawling laps across the dining room. Do this and you'll get that. And then I noticed that his intrinsic motivation to pursue crawling was flagging. I was sending him the message, "Crawling honks, therefore I have to give you goodies to get you to do it." I wasn't seeing him flop down to give army crawling his best shot on his own anymore. What good was that? reading Alfie Kohn's exhaustively researched book Punished by Rewards made me realize I was treating Heath like a lab rat. Which is not surprising really, since we have been wielding pop behaviorism techniques on children and workers since before B.F. Skinner came along -- he just made it seem more scientific. But Kohn trots out study after study showing that systems of reward and punishment may bring short term compliance but fail consistently over the long term at bringing out the best in people -- the best behavior, learning, creativity, or productivity. What people really want are not rewards, but choice, autonomy, meaningful activity, and collaboration.
How to discuss all this with a two-year old? Hmmmm. Back to the dance. On the therapy side, we have to explain to him as best we can and as respectfully as possible that the therapeutic activity which may tire and annoy him is important to his own goals of independence. We need to offer him choices whenever possible about how to undertake that activity and even when to let it drop. And we need to be alert to what is meaningful to him on a given day and help him achieve it on his own if possible. We have to let his inner reward system of pure satisfaction work for him. Rather than overwhelming him with praise every time he gets the peg in the hole, we have to sometimes allow a silence in which he can hear his own little firework bursts of pride inside. Because that's really where it's at.
Ultimately, it's up to us to put him through his paces and up to Heath to make the big moves. No chocolate chip in the world is big or tasty enough to compete with his own primal desire to change and grow. We can trust that desire, we can inspire it, we can encourage it when it falters, but we aren't the source of it. And he doesn't need us to be. All we can do is find honest ways to connect with his intrinsic desire to crawl, (or eat with a spoon or break out of his walker one day) which are more powerful than any extrinsic motivator we could devise.
And maybe we save a piece of our relationship in the process. I worry that in addition to being Heath's primal source of love and security I am also his Olympic coach, for part of the day. It is my duty not to leave his body to its own devices during crucial childhood years of ultra-neuroplasticity and rapid physical growth and development. He will go further with guidance, habit-building, therapy, and strengthening that he would without these things. So, I need him to comply.
If I rely on manipulation as a technique to gain compliance for a week, that's one thing. But if I do it for years, I fear we will pay a price in terms of lost trust and respect. Maybe we won't get as many reps done tomorrow without M&Ms as we will with truthful explanation, but maybe Heath's long term enjoyment of exercise and exceeding his limits will be greater. Maybe one day he will surprise me, as he did this morning feeding himself bite after bite of cereal, by saying, "Hey Mom! Let's do weight training!" Or, "I think I'm going to learn to ski." Or whatever he sees on the horizon as his own next possible adventure.
I hope we're making the right call where all this is concerned. Parenting is a balancing act like no other. Sometimes I think there is a right answer: either we're pushing him too hard or we're not pushing him hard enough to reach his physical potential. Other times I think there is no either/or, no way to measure a "best" outcome that doesn't include a sense of rightness, love, trust and mutual respect.
Happily, trusting Heath to make his way is as easy as trusting the tulips to come up in May. They do it because they need to, they want to, and because it's giddy, exuberant fun. Same with parenting (and grandparenting! ) this incredible boy. It just happens, in phases and seasons, with something much bigger guiding us in turn. Somehow, I'm fairly certain, it works.
And now for a story I love to tell. Long about February of last year, my friend Daria and I met at a special needs moms' night out in Missoula. We were seated at opposite ends of a big, long table loaded with cocktails and Asian food and didn't get a chance to talk, but she emailed me later and introduced herself as mom to Gia, then 8 months old, who was on a feeding tube, as Heath was at the time. I had just gotten in touch with Markus Wilken, who would help Heath wean from his tube later that year. Daria followed Heath's progress, cheered him on, and began to cook up a plan to help Gia break free of her g-tube too.
Gia is a magical girl who is genetically unique - she was born with a duplication of the 9th chromosome (9q34 duplication). There are a couple of journal articles about similar but not identical chromosome anomalies to Gia's, so no one out there is just like her! Unlike Heath's diagnosis of CP, which is well understood and super common at 3.3 people per thousand, Gia's is one full of unknowns and mysteries. She has dainty hands and feet, a small rosebud mouth, deep dark eyes, and a smile that will melt your heart. She receives physical, occupational, and speech therapy and has some hearing loss, though how much is not clear. What her friends and family do know is that she is adorable, happy, curious, persistent, fun-loving, affectionate, loves to roughhouse with her big sister, and has almost always been interested in food. Despite the appetite-killing sensation of tube-feeding, this little Russian/Italian girl began to love spinach (!) and other purees long ago and I always saw her became animated when food was being served. Anyone could see there was an eager eater in there!
Tube weaning wasn't an easy road for Gia or her family. Because she was prone to ear infections and catching colds, two previous wean attempts had to be cut short. Finally, in late January, Daria and Gia traveled to Seattle Children's Hospital for a two-week outpatient wean with Karen Quinn Shea, a gifted and intuitive feeding specialist.
Gia weaned with flying colors! I was able to visit during a baby picnic early in the wean and Gia was so receptive to being around food! She happily crumbled a scone and put small pieces in her mouth. We could see it was coming! After all all the false starts and disappointed hopes of the past year, Gia's wean was perhaps the fastest and smoothest I've heard of. Once her tube calories were reduced, her evident joy at being able to truly desire, taste and be satisfied by food was glorious!
While traveling to Philadelphia last month, Gia ate so much she was able to drop supplementary night feedings. She demolished all kinds of food at gatherings with family and friends. As Daria wrote...
Monday she enjoyed the non-cheese parts of a Philly cheesesteak!
Tuesday evening she ate 3 meatballs, a handful of green peas followed by TWO large chocolate cupcakes with frosting and sprinkles!!!!! Each cupcake was 280 calories!!!!!
This was was what she ate yesterday. 1 4- inch pancake with butter and maple syrup, 3/4 of a hard boiled egg (she ate all the yolk, less of of the whites), 1/2 of a vanilla large cupcake with frosting, 1/2 of a chocolate cupcake with frosting, 1 graham cracker, 2 meatballs (sandwiched sized) with added olive oil, about 1/2 cup fried rice, 5 pan fried pot-stickers (!!!!), and topped it all off with 1/2 a purple marshmellow peep.
Needless to say, Gia gained weight and enjoyed herself thoroughly.
Yet, the drama is not entirely over. Some of Gia's medical team in Missoula remain concerned that after three months her weight has not returned to its pre-wean level. Hmm. It took many, many months for Heath to gain his weight back, and he never returned to the 50th percentile on the weight curve. Why? He never belonged there in the first place. In fact, I feel guilty that we stuffed him to such an unreasonable extent on the advice of well-meaning dieticians. No wonder he vomited daily, painfully, until the wean began....as Gia used to, and no longer does. (Since his wean, Heath has climbed steadily up the 5th percentile, which his pediatrician agrees is appropriate given his genetics and diagnosis. He grows, learns, develops, is happy, and eats with gusto until he's full. End of story.)
I admire Daria for working patiently and civilly to educate Gia's entire team regarding tube feeding best practices and the tyranny of weight charts which do not apply to our unique -- and thriving -- children. Since her wean, Gia has made phenomenal gains in motor development. She is more outgoing and confident. And most importantly, I see her beautiful smile more and more!
For more about Gia's amazing journey, read "An Unexpected Path," a beautiful series of posts by Daria at Mamalode (the local Missoula moms' magazine) about tube weaning and the path of "unexpected" parenting. Daria tells Gia's story much better than I can -- you can also find her blog here. I'm so moved by her unwavering advocacy for Gia, whose uniqueness cannot be plotted on any curve. It doesn't take a medical degree to see that this girl has her eyes on the prize.
Wow! Here's a little video diary showing a few amazing moments from the past month. Heath has made some doggone startling progress.
We're very proud and very amazed, since we didn't put any special practice into these activities. All kids are miraculous in their drive to grow and learn, and kids like Heath even moreso, as the brain is not just learning but orchestrating an intricate healing process at the same time. It gives me shivers to see how beautifully it happens!
On top of all that running in circles, this was Heath's first semi-informed Easter. He understood there was a theme to do with eggs, colored liquid, a traveling rabbit, and enough chocolate to choke a horse. It was all fine by him!
The cousins hunted eggs in the snow.
You like snowballs, Cousin Luke?
Whoooaaaa!!
Grandma Marcia and Grandpa Ed drove out from Tacoma for a wonderful visit just before Easter. Heath enjoyed waiting for them in the hotel lobby.
He and Grandma enjoyed a lavish tea party. "Will you be having the mashed banana or the wavy tomato?"
Drink up, Wild Thing!
Heath and Levi keep on enjoying their weekly adventures. They love each other so much and share big hugs at the end of their playdates.
We joined a local homeschool group for pottery class. What a bunch of caring, creative, articulate and wonderful kids (and moms)!
Heath issued instructions and I helped him make a crescent moon with large lips.
Last but not least, Grandpa Tom gave Heath a treasured gift. A dropped elk antler -- now sitting on the shelf in the playroom. Heath couldn't be more in awe.
What a great month it's been! In other exciting news, I've been doing some research about what motivates people (children included) to undertake difficult things. In my endless quest to make crawling practice more attractive to Heath, I've ended up reconsidering the bribery techniques I assumed were fundamental to parenting, not just therapy. Next post: Alfie Kohn's thought-provoking book "Punished by Rewards."
Gah! So much has happened in the last forty days. Here are the top ten news items since last we blogged...
10. We left the snow....
and spent a week in Mexico with my mom! Heath fell in love with the pool...
...was slathered with sunscreen...
...and spent a lot of time kicking back.
9. He has made a few forays onto the potty.
8. Anna came by for a cookie-baking date. These two are wonderful playmates!
7. Heath has kept up his weight-lifting with Andy, a physical therapy student from the University who comes by weekly.
6. Heath and his little friend Levi are cute as pie together.
They had a ball racing around the lobby in the old Florence Hotel last week.
5. The zoning permit for our distillery is up for public comment.
4. Heath can sight read a lot of words. This looks like a braggy stage mom video, but I wanted to show the developmental pediatrician how bright he is, since he is too shy to speak or do much in front of her.
3. He loves his new clubhouse.
2. He can't stop saying WOW, wow, WOW, when he looks at our seedlings.
An FYI for families and therapists who are facing struggles with feeding....
Dr. Markus Wilken, the gifted feeding specialist who came from Germany to help Heath become an eater, is now in private practice and collaborating closely with my great friend Jennifer Berry of Spectrum Pediatrics in Virginia. Markus will be employed through Spectrum to educate families and feeding therapists in the U.S. about intensive tube weaning and tube management.
Jennifer was Heath's first occupational/feeding therapist, before our move to Seattle, and her intuition, intelligence and compassion were immense gifts to our family when Heath was not yet ready for weaning. She and Markus will be a dream team!
If you are interested in obtaining an evaluation from Markus, you can contact him at: mail@markus-wilken.de. If you are a health care professional interested in setting up a continuing education workshop on intensive weaning and tube management, contact Jennifer at: jennifer@spectrumpediatrics.com
What's Going On? Heath is an eater!! He used to be 100% dependent on a feeding tube. Now he is just a regular kid with a little CP, loving life and keeping it real.
