grace, please find me

Last Thursday, my hair still wet from dodging the heavy snow as I rushed—late—into the courthouse, I was stopped still in a stairwell as my lawyer whispered back to me.

“You agree to it? You can live with that!?” she grabbed my arm. She had worked in this system for so many years, knew the world of developmental disabilities, of mental health, said that she thought I was doing the right thing. I trusted her. She would have said no before I ever got there if she had thought it was a bad idea—she knew me that well. My lawyer is not one to mince words to save my feelings, but after all this time I trusted her. I knew that she had always wanted what was right. More than that, I trusted myself, and I let go.

I was still nodding, barely breathing, then pacing back and forth, looking up at the high ceilings, the light coming in the windows near the top. My lawyer walked away from me, quickly across the hall, saying “Okay.” I had just agreed to give away my rights to make medical and educational decisions for one child, to have them for another. It was going to be okay. The choice that felt like a surrender to me, felt right. It would benefit everyone else. In other words, it was the only choice I could make.

“When I let go of what I am, I become what I might be” (Lao Tzu).

Who am I?

For years, I have been the mom of my son, not of the older one, and not of my daughters, but of my son with developmental disabilities. Oh sure, I am a mom to all four of the kids. I do the typical mom things, read stories, help with homework, shuttle kids around, volunteer at the school when I can. Sometimes more. I try. I have done what I could for all of them, but nothing compared to what I invested of myself in the life and times of my ten year old. For ten years, it is his mom who I have been.

It is a laudable job. Mother of child with special needs. Advocate (not any old parent, but one who stands up for her kid against the System). I found generous people—much more generous than I had known before. I found patience. I found purpose. It is a job I never wanted, though. I was an affable, word worshiping Europhile with grand visions of saving the world in other ways, increasing global understanding through languages and literature. My visions of motherhood involved exposing the kids at a young age to tapenade while on sabbatical in Provence, hiring theater-major babysitters who taught my kids Shakespearean scenes that I would make into productions for the neighborhood.

Well, I do still speak French, and I do still tutor from time to time. My daughters do love to go out on my balcony and yell, “Romeo, Romeo, please take out the trash” (where did they get that???). But my kids’ performances tend more toward High School Musical than Hamlet, and my ten year old? Well, he always loved the “Tomorrow, and tomorrow, and tomorrow…” soliloquy from Macbeth. The popping sounds made him laugh—not really the effect they were supposed to have. But then, my ten year old never learned to talk.

I remember my suspicions when he was tiny. He was a good baby, smiled early, hardly ever cried, and he was beautiful. Not just cute, but angelic. Next to my older son, the one who tried my patience sorely (even as I tried not to laugh), the one who would later be diagnosed with bipolar disorder, he seemed a much-needed gift.

Still, something in his cry, when he did cry, broke my heart a little every time I heard it. I picked him up, feeling that he needed more of me than I had, and I had not even noticed until it was too late that he needed me at all. By the time my little boy actually called for me, it was as if he was not only fed up with waiting, but in pain. Looking back now, I think he was. I think it never occurred to him to do something to get my attention, only to cry in actual, physical pain. In the busy days with a toddler, I sometimes forgot that the baby had not asked to eat for hours. He didn’t reach for things, couldn’t pick up his head. He did not try to push up his head if I put him on his tummy—he just lay there until I saved him. At four months he still did not roll over. He was content to sit in his bouncy seat for hours, cooing at me enthusiastically when I sat beside him, but otherwise apparently happy alone. Everyone told me how lucky I was to have such an easygoing fellow, who could be passed quite easily from woman to woman at any given community function. I agreed, I was lucky, but it just didn’t feel quite right.

I have come to hate the “What to Expect…” books. They make it sound as though everything is always going to be all right, and line up lists of normal milestones that end up feeling like points of comparison, or competition. I guess there has to be some way to assuage your everyday parental anxiety, but I came to see these books as cruel reminders, flip descriptions of what everyone else’s child was doing. I came to resent my own baby books. Growing up, I had always loved to look back at what I did at certain ages, filled out meticulously by my mom. I filled out pages for my first baby, for a while, until the measures for him just didn’t seem right. I completely stopped putting the milestones next to the pictures of duckies when my second son never even met the milestones, months after they were promised to happen. Late bloomer. No, no. No! I was sure it was just a fluke. My own mom had the proof that I was toilet trained by age two. I don’t even remember when my kids were out of diapers. Well, my ten year old still is not. I know, I should know these details. I did keep track of so many things, know some key facts about my children’s development.

Here are a few.

For my older son: Put keys in car ignition properly – age 18 months (after retrieving my missing keys—from his toy tractor)… I would never believe it if I hadn’t been there.

For my younger son: Walked – age 4½ years (after first time riding a horse)

For my older daughter: Crossed the street by herself – age 3 (to visit the dairy cows and pick blackberries)… chased, by me

For my younger daughter: Said first sentence, “I’m the baby.” – age 18 months (and got passed around to every kindergarten mother because she was so cute).

I can also tell you the dates of a few key events for my ten year old. The first EEG, EKG, EMG, the first CAT scan, MRI. Expensive equipment. Mostly nice doctors. But first came the crushing blow. It was on my mom’s birthday. I got home late in the Vermont snow, a lump still in my throat. My son was ten months old, and I had asked the question at six months (“No, he’s healthy—just a late bloomer”), then at nine months (“Maybe you should come back in a month.”). It was a month later. My son had still never rolled over on his own.

“Nothing has changed. He’ll still be able to live at home,” the pediatrician told me before he walked out of the room.

It was only years later that I realized that these were hardly sensitive words. I wanted to know the future, and it was not in the “what to expect” category. He said that nothing had changed. Everything had changed. He said my son could still live at home. I was nowhere near the point of thinking that any of my children would live away from me before they grew up, and this doctor had the nerve to put that thought in my head. How could he give me news like that to share with my mom on her birthday? Saying it to her only made it seem real, and I didn’t even know what he meant by “delayed.” Wasn’t that the same thing he said before? Late bloomer? The next day, I hit the toy stores in search of developmental toys, mirrors. I made the appointments, neurologist, geneticist, had the blood drawn. I discovered the internet. I changed.

It was another year and a half before someone said the word “autism.” I’m still not sure how it fits, but it certainly got everyone’s attention better than “developmental delay.” I signed up for a year of classes–the University of Vermont’s Rural Autism Project probably saved my life. I drove to Montpelier every Wednesday night through every sort of weather, winding through the dark roads late at night, looking for answers, finding myself in the process. I was his mom. I dragged the kids–first just the boys, then another girl, then another–to Burlington every Friday for several years to see the “right” occupational therapist before I found a great one near us. I made friends, connections, went to conferences, read, looked for the cure. “Let Me Hear Your Voice” convinced me that the behavioral program the doctor had recommended in the beginning was the only thing that would save him. With it, he would talk. I wrote letters to important people. I complained. And a year later, when we still did not have those behavioral services, I called a more important meeting, wrote to more important people. My son got his program, and he even said a few words, for a while. Everyone knew my son. He was my cause.

Things continued like this for years, so many things, so many efforts, and still they do. But one day, near the end of a year in a fellowship program that was nearly all inspired by this one child, I realized that I could no longer lift him. I found this out because I could not walk after I tried to do it too many times. Apparently, a lot of other people realized that they could not lift him, either, because it was getting harder and harder to find people to help me. The ones who thought they could were getting hurt, pulled muscles, bite marks, scratches, enough. I missed the people who helped me, helped us. If I think of the amazing people I met, and the experiences I never would have had, I realize how lucky I was… also how selfish. I found my voice in giving it to a boy who does not have one, and now I find myself wondering what to say.

I let my son go physically several months ago–he now lives with his dad–a tough choice in itself (as I wrote here)–though I know his dad loves him. I didn’t want to separate the kids, but what more could I do? It should lead to a better life for him, a better life for his brother, who also needs me to fight for him, a better life for his sisters, who just need me period. A better life for me.

…I think. But what is that life now? I wonder, as I realized the day after that court date, at my son’s annual school review, that I would not be the one signing the individual educational plan. Oh, yes, what I gained in the exchange is precious, necessary perhaps. It lessens the struggle. There really was no choice. But giving up on one son to save another? Oh, yes. My older son needs this now. My older son has bipolar disorder, and walks a perilous labyrinth filled with the dead ends of denial and the land mines of stigma. He can learn to walk that path safely, though–with some help. But now I know I cannot walk it for him. His sisters need me. I need me. But this all sounds so righteous. Really, the best I can hope is that it is right. I make choices for some, for many things, but I have no control over how things turn out. I never did. And really, what did I have then? What do I have now?

“When I let go of what I have, I receive what I need” (Lao Tzu).

home sweet group home

My friend’s neighborhood is about to be invaded by adults with Prader-Willi Syndrome.

This, apparently, is a problem.

The issue came to light recently, when the other house on the market—oh, my friend is trying to sell her house right now—sold, to an organization that places people with various disabilities in group homes. And get this: the group homes are in ordinary communities, right next to everyone else. In this case, it is one of the finest neighborhoods in town.

Some may call this inclusion.

My friend’s “neighborhood organization,” created solely around this issue, by the way, calls it a threat.

My friend, who also has a few kids with special needs, is incensed by her neighborhood’s reaction. Knowing my views on the subject, she called me. My advice? Go door to door and ask all the families who have kids receiving special education services to put up signs that say “THIS IS A GROUP HOME.” After all, what is the difference?

The agency that owns the home intends to go door-to-door to talk to neighbors in the community. The neighborhood association sent out emails suggesting that residents should not invite the agency representatives in. Instead, neighbors should wait for the public forum, with attorneys present.

And for what? To keep everyone who is “different” away from this elite group? Perhaps they see the group’s individual approach as a “divide and conquer” approach. But what if the neighborhood organization has simply made statements that only appear to reflect the opinions of all its members? What if the emails that the group sends out ask not for input from the community, but only determine the action that should be taken? What if someone disagrees?

I called a friend who deals with this issue, and others like it, often enough. The suggestion: nada. The group has mobilized, and a relevant state agency, Commissioner included, has already been notified of the neighborhood’s intentions to fight this home tooth and nail. Do they have a case? Well, sure. It’s a case, as long someone makes it one.

So, after a few days of incited work to educate the community, I am calmed by my friend in-the-know. “They’ve made up their minds. They don’t want to hear your side,” he says. He has seen a lot of this before, so I believe him. But I do not want to. These neighbors just don’t want to hear the worth of people with developmental disabilities! My friend tells me this. And this guy is one of the most unflappable people I have ever known.

I do not deal with this realization so well on my own. After all, Prader-Willi… well, kids with Prader-Willi are not so different from my own kid. In fact, he has been tested for it, because he’s a food-loving kid with low muscle tone, cognitive impairment, a sweet temperament, and according to this group, no value! When he grows up, will no neighborhood want him either?

Here is a description of a few Prader-Willi symptoms, in far more detail than anyone wants to read:

____________________________________

Neonatal and infantile central hypotonia, improving with age
Feeding problems and poor weight gain in infancy
Excessive or rapid weight gain between 1 and 6 years of age; central obesity in the absence of intervention
Distinctive facial features—dolichocephaly in infants, narrow face/bifrontal diameter, almond-shaped eyes, small-appearing mouth with thin upper lip and down-turned corners of mouth
Hypogonadism—genital hypoplasia, including undescended testes
and small penis in males; delayed or incomplete gonadal maturation
and delayed pubertal signs after age 16, including scant or no
menses in women
Global developmental delay before age 6; mild to moderate mental
retardation or learning problems in older children

Hypothalamic dysfunction is thought to be the cause of the disordered appetite/satiety function characteristic of PWS. Compulsive eating and obsession with food usually begin before age 6. The urge to eat is physiological and overwhelming; it is difficult to control and requires constant vigilance.
Infants and young children with PWS are typically happy and loving, and exhibit few behavior problems. Most older children and adults with PWS, however, do have difficulties with behavior regulation, manifested as difficulties with transitions and unanticipated changes. Onset of behavioral symptoms usually coincides with onset of hyperphagia (although not all problem behaviors are food-related), and difficulties peak in adolescence or early adulthood. Daily routines and structure, firm rules and limits, “time out,” and positive rewards work best for behavior management. Psychotropic medications—particularly serotonin reuptake inhibitors, such as fluoxetine and sertroline—are beneficial in treating obsessive-compulsive (OCD) symptoms, perseveration, and mood swings. Depression in adults is not uncommon. Psychotic episodes occur rarely.
Motor milestones are typically delayed one to two years; although hypotonia improves, deficits in strength, coordination, balance, and motor planning may continue. Physical and occupational therapies help promote skill development and proper function. Foot orthoses may be needed. Growth hormone treatment, by increasing muscle mass, may improve motor skills. Exercise and sports activities should be encouraged and adaptations made, as needed. Proficiency with jigsaw puzzles is frequently reported, reflecting strong visual-perceptual skills.
Hypotonia may create feeding problems, poor oral-motor skills, and delayed speech. The need for speech therapy should be assessed in infancy. Sign language and picture communication boards can be used to reduce frustration and aid communication. Products to increase saliva may help articulation problems. Social skills training can improve pragmatic language use. Even with delays, verbal ability often becomes an area of strength for children with PWS. In rare cases, speech is severely affected.
IQs range from 40 to 105, with an average of 70. Those with normal IQs typically have learning disabilities. Problem areas may include attention, short-term auditory memory, and abstract thinking. Common strengths include long-term memory, reading ability, and receptive language. Early infant stimulation should be encouraged and the need for special education services and supports assessed in preschool and beyond.
General health is usually good in individuals with PWS. If weight is controlled, life expectancy may be normal, and the individual’s health and functioning can be maximized.
The constant need for food restriction and behavior management may be stressful for family members. PWSA (USA) can provide information and support. Family counseling may also be needed.
Adolescents and adults with PWS can function well in group and supported living programs, if the necessary diet control and structured environment are provided. Employment in sheltered workshops and other highly structured and supervised settings is successful for many. Residential and vocational providers must be fully informed regarding management of PWS (http://www.pwsausa.org/syndrome/basicfac.htm).
________________________________

And really, what would be so bad about anyone with any disability living here? What if the group included those with mental illness? What if they were supported, trying to live a life within a community? Do they not have the right to do that?

All right, readers, this is just not right. Last year I had the rare opportunity to be a fellow in a LEND program. LEND stands for Leadership Education in Neurodevelopmental Disabilities, and I entered the program with no more credentials than the ones you get from being a parent, and perhaps a determined parent. There we fellows spent our Thursdays and Fridays on the grounds of the Fernald Developmental Center, an institution, a constant reminder perhaps of what we did not want for the future. It was one of the most challenging years of my life, and I can only hope that the late-night hours spent struggling to finish papers on disability policy issues were not for naught. The effort should be more, part of a bigger picture. I wanted the training so I could help change the world. And if it takes the rest of my life, I will fight in whatever way I can for the rights of “those people” to live as people not in places like Fernald, not away from “us”, but with “us”, in “our” communities.

You never know when “one of them” is really “one of us.”

Well, yes. Actually, you do. After all, we are all only temporarily abled, and maybe not always at optimum ability level, even at that. It is all a part of the human condition that we seem to fear so much.

This, from the Developmental Disabilities Act of 2000, sums it up well enough for now:

“..disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society… ” [underline mine]

And now the real challenge, when preaching a cause seems so easy… I will try.. be it so hard, to understand and hear the fears of the people who want to keep these “different” people–all “different” people–out. I will try to understand. We are not all so different, and we all have our fears, our prejudices.

Perhaps we are also all a bit different, but we can still love our neighbors.

before i move on

I looked at the date today and realized that I have hardly written in the past ten days. It made me wonder. I thought I’d be full of thoughts at this time. True enough, but words just did not come out of them. Sometimes, though, it is hard to put words to things that have not yet started to make sense. My little boy left just a week ago today. All right, he is not little: he is ten years old. He is heavy. He actually is pretty big. And strong. I wrote about him before, anticipating the day. The day came, and I thought I would leave it there, move on. But it has taken a little longer.

I saw my son off last Friday evening, a strange day, but all right. I went briefly to a cookout for his camp. Friends met me later, other moms who have kids like mine, single moms. We said we should have told the waiter that we were exotic dancers on our night off. We did yoga—it’s close, right? I went home, kept busy all weekend, a bit dazed, then came home Sunday. The other kids showed up without their brother.

The quiet in the house at first was a relief. It can be all-consuming to care full-time for someone whose needs are enormous. I had taken it for granted for so long, it was a relief not to have to remember so many details, at least the first night. The next day seemed even quieter, even with the other kids. And the next two, nearly empty. I made enchiladas, one of his favorite meals, and my youngest girl just started crying. This, from the one I had deemed least likely to be upset by the change. Maybe the others were not quite ready to cry yet. Maybe I wasn’t quite ready, either.

Tonight, it feels right. He is here now, visiting for the weekend, thrilled to have risotto (of course I planned the menus thinking of him), and to take a bath. He is making the noise that fills the house, the same noise that in all truth annoyed the hell out of me sometimes, but a true indicator of his presence, sweeter now that I haven’t tried to sleep through it in a few days. Now, on some weekends, he will still come home, and his sounds will fill the house again.

I was not expecting to be hit so hard by his absence. I knew that one day, the needs would be great enough that I could not handle him on a daily basis. Already, it had become nearly impossible to find personal care attendants who were able to do the job. I attributed it at first to a general shortage of workers. There was even legislation passed to help the situation: it must be a big problem. I found thirty-two people to interview, nonetheless, and hired ten. Of those, eight quit before the first day, and I had to fire the other two. Wow. Harder than I thought. I had a great idea during last year’s program in disability policy, finding help for families who need an extra hand to keep the people we love at home. It is a problem, an enormous one, one I felt we could make better. One day, I was speaking with a man who had been involved in the independent living movement for years. Yes, people should be able to live in their community, and should have the supports they need to do so. But sometimes, he said, to my surprise, it is nearly impossible for the community to support everyone. In our case, after the last person left one day, feeling guilty enough that she never came back to say goodbye, I knew that we had reached the end of the line.

Behavioral challenges, safety concerns, limits to mobility, few self-help skills: these were the things I tried to help my son overcome. So many people tried. I miss those people. I miss the smiling young faces who came to teach, to play, to help. I miss the therapists and teachers. I counted once how many people had come into our home to work with my son. At age ten, the number reaches near 100. It may seem hard to believe, but the turnover is enormous for so many reasons. It is a job with a “Puff, the Magic Dragon” quality to it at times. Other times, budgets get cut. Sometimes, people just burn out, and sometimes it is far from pretty. Many times we had three and four people coming to the house on a daily basis. I loved so many people who came into our lives because of my son. He brought people whose capacity for love and patience was greater than I sometimes experienced. It was a thoughtful world, despite the constant fight for the help kids need. I remember each and every one of the people who visited our life—wish I had a picture of all of them. These people became so much a part of the scenery, a difficult relationship to negotiate at times. Professional helpers could not be family, were different from friends. They leave when services end, and yet, they are so much a part of our family, if an indefinable one.

So, some things change. There will still be people who help my son in his school. We will still know them. I do this with the hope that he can have the life he wants, surrounded by people who care about him. It’s nothing more or less than what any parent wants for a child.

I miss him. He is upstairs now, already in bed. It feels right with him here, even for a few days. It is a guilty relief, to know someone else has to do it every day. It will take a little while before it feels right for him to leave, too. It will take some time for this to make sense, but already, knowing that he can come home, already I know that in many ways, he never really will leave.

Life goes on.

funny things that have happened to me – part I

Yes, I did note that one of the private things in my life is that I am a one-time horse-owner. I do not recommend it, especially if you feel the least bit intimidated by animals that are bigger than you are.

Forgive me, horse lovers. I have surely hit the nerve of some of you out there. I assure you, I voice my caution with utmost respect and admiration for the equine enthusiast. Indeed, I imagine that it is you, oh horsey friend, who truly understand the care and loving that these animals need.

So how did this all begin?

I was pregnant, pre-doctoral-exam and, looking back, half mad. I had gone from my normal coursework, teaching and student life to pre-mom panic near the hub of the universe. We lived in Brookline. We had just moved from Colorado, and I loved the hustle of the city and the feel of being in the East. But, when prompted sufficiently, I did have to agree that it was sort of noisy, and really expensive. So I entertained the notion of at least looking at houses one day while we were on a little getaway in the Northeast Kingdom. There were some nice houses, much cheaper, of course. Some were on beautiful, quaint commons. Some were in the woods. There was one stunning house, on pavement (as opposed to the ubiquitous dirt roads found in those parts), that just went with the image of canning and berry picking, and drinking tea on the back porch after a satisfying day’s work on a novel I had not started, or even considered writing… I would be embarrassed to admit falling for the whole thing, had not so many others been similarly seduced by this image of bucolic utopia. A few months later, we packed up the new baby and headed for the hills. It was March, and they were snowy hills, I might add. There was a LOT of snow, and it did not melt until May. Late May. It was forty degrees below zero the night after we moved in. Nothing melts when it’s that cold.

Although I found many things to love there, I felt a tad isolated—oh, I can tell more stories about that, too—when I lived in Vermont, and the horses were no help. Mostly, they took a lot of time. Now, you all may assume by reading this that I don’t take well to critters. Not true. When I was little, we fed raccoons in our suburban backyard. I was a big birdwatcher. As for bigger farm animals, as a little girl, I rode horses, albeit cautiously, nearly every time my family went to the country to see my aunt and uncle, about once a month. I was never the horsey girl who was in the equestrian troop of the Girl Scouts or wanted riding boots or read Black Beauty over and over at the age of eight, but it was pretty fun seeing my cousins and riding Dixie. (I also shot at cans with a rifle and drove homemade go carts too fast through the hills, but those are yet more stories for another time.). Dixie was gentle, and fun to groom and feed, and I really liked the barn. And then I went home and didn’t think much about horses. That was my experience with them.

So the question is sure to have come up in your mind by now. Why horses?

Well, the answer is simple. They came with the house.

The house we moved into was beautiful. It had two staircases—a dream I had growing up, because of the house where I used to take piano lessons. Add to that the push-button lights, three huge clawfoot bathtubs, pocket doors, leaded glass, a full walk-in pantry. It was elegant, wonderful inside. And outside were seven acres of perennial gardens on a gentle slope. Around the back was the entrance to the updated stables in the lower level of a three-story barn attached to the house. And there, in the stables, were the horses.

The big Morgan mix was twenty-six years old. Her name was Amber, and she was cranky. I couldn’t say I blamed her. The people who owned the house seemed to love her, and she loved them, and now they were going back to merry old England. The younger one—who turned out not to be that much younger—was named Marc Antony, or Tony for short. Tony the pony. Oh yes, he was a pony, and he was hell on wheels.. ahem, hooves. If Amber did not get out, Tony did. And if Amber did, it was usually because she was worried about Tony, who had already loosened the gate and headed down the field, or possibly the street. Have you ever tried to catch a naughty pony? The normal techniques I tried with cats sometimes worked. Tony liked oats, and occasionally came running if I shook the bag. When that trick failed, though, it was not fun, especially because I was not used to hip-deep snow, ice, and otherwise nasty conditions. So that was it for me. The care and maintenance of beasts, as well as starting the fire in the woodstove, were now in the hands of my then-husband. After nights up nursing, I had a good excuse to sleep in until seven a.m., after all.

There were still many coincidental worries around the animals. We were constantly running out of hay and feed, and the bit about shoeing them was more trouble and expense than I ever could have imagined. We had to lock the oats away from Tony, or he would eat too much and somehow develop founder, which is a scary condition I had never encountered. I felt that we were probably not doing everything quite right, and at best, were not giving the horses the opportunities to pull carts and be otherwise useful and productive. I had the idea that Tony’s shenanigans were as much a statement of boredom as a simple part of his personality.

Still, we kept the horses. I would have given up much sooner. Once, I was on my own for a couple of weeks. I was six months pregnant, had another baby in a backpack, and was shoveling manure. It was not a graceful or comfortable thing to do. In context, though, it did not seem like a big deal. What made it somewhat easier was the fact that many of the people I had met up there were dairy farmers. They were in cold barns working from four in the morning, sometimes with a young child or two in tow, sometimes pregnant, usually tired, and taking care not of pets, but of the animals who were their livelihood. I have never seen anyone work harder. They were often out there for hours later than any normal bedtime, repairing machines, tending sick animals, haying in the summer. I saw their raw hands and red faces, day in and day out, and I couldn’t really find it in myself to complain about a couple of cranky, but somehow amusingly mischievous horses.

Still, it was during my then-husband’s first long motorcycle trip that I realized the horses needed to go. By that time, number three child was in the oven, and I realized that my role as a mother was turning into something I had not expected. My second boy’s delays in development across the board were quite evidently not cured by the various therapies I had set up, and a Leo the Late Bloomer scenario was becoming less and less likely. In June, my son was diagnosed with autism.

A neighbor gave me the name of the previous owners of the horses, and I called them. A few days later, they came and took Amber and Tony back to the horse farm where they had lived years before.

Strangely enough, after a couple of years, horses were exactly the thing that gave my son more than any other therapy he has ever had. I have no statistical data to prove this, and it could very well be argued that all the other efforts we had made just came together right then. It did seem like a miracle, though. He learned to walk, then run, after just a few rides on the back of a horse, a very calm horse—well, actually, a pony. I never knew this, but according to the occupational therapist who ran the show, humans ride horses comfortably because our gaits are the same. Horses are therapeutic, she said, because they give the rhythm of walking to those who don’t have it themselves. It seemed to be exactly the case for my son. And the magic continued. He said words he had never said before or since when the rhythm was right on the back of those animals. He smiled when he was riding, and rode on trails for several weeks with his brother one glorious fall.

Now, it takes a special sort of horse to be able to be a therapy horse, and I can tell you right now that Amber and Tony were a little past their prime for that kind of training. One thing was certain, though. I was no longer afraid of big animals. I stayed away from their backsides, more to avoid being kicked or stepped on than anything else, but aside from that, they didn’t scare me anymore. Chasing an ornery pony around the yard in the dead of a cold Vermont winter was a great way to dispel any fear I had.

So, when the time came to put my four-year-old son, who could barely sit up, in the saddle, I handed him over, watched him, and waited. I trusted, watched, waited, much as I do today, and will no doubt continue to do, as his life moves on at a different pace from the lives all around him.