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Pig is ready with the enchiladas.

Enchiladas are served.

And now, the hnt part:

Enchiladas are gone.

enchilar “1. to season with chiles; 2. (Mexico) to annoy; 3. to sting, burn.

A simple meal in the final execution, the preparation of enchiladas in my house was a labor of love. On a busy evening, it could be quick: a jar of sauce, pre-grated cheese, onion, whatever else was left to throw in, roll them up, stick them in the oven, and they were done. Sometimes, though, I made the sauce myself, boiling and scraping out the chiles, shredding the chicken (roasted–perhaps not traditional, but certainly tasty), softening the onions, nearly caramelized (again, maybe not traditional), before adding them to the cheese and chicken mixture, the mild peppers.

It was a meal that I had loved for a long time, and perfected during the Colorado years, in a land of hedonism and endless meal choices. It was there, watching Mexicans, many nearly invisible in the kitchens of a town many could barely afford to live in, that I was inspired to find the secrets. It was there, in the only affordable living space, a cheap deal in the land of plenty: the trailer court, that I first made enchiladas.

The trailer court was not my first choice for a home, snob that I was (well… not snob, to be honest: I was actually afraid of the trailer court). The trailer option did allow us to stay in town, and after a bit of arm-twisting, my then-husband convinced me that it did not have to be the place of tornadoes and dysfunction that I had grown up experiencing it to be. No, this was the West, not the Midwest, and things were different.

And different they seemed in those early days. I frolicked in the kitsch, put a clichéd pink flamingo out front, and started cooking. I became pregnant, blurred my doctoral dreams, nodded gazedly to the sudden move across the country. Boston. I was in hub heaven. I could still finish my work there, and made arrangements. My advisor said a class at Harvard could help me through the classical language requirement. Harvard! Imagine that.

The enchilada ingredients were harder to find, at least then, at least within walking distance of our house.

Fast forward several months. The baby was pushing to come out. Someone was asking me to sign something. A purchase and sale agreement was Fed-Exed to northern Vermont. “Why there?” you ask. Hell if I knew. I cannot even remember when I stopped asking those questions. The town we landed in was one of so many places where we picked up real estate brochures: Charlotte, Cheyenne, Guthrie, Belfast–at least this one was not a ranch. We could have landed anywhere, back in those days that any vacation could become the next home sweet home. Vermont seemed nice enough, though a bit lonely as the summer faded. I loved being in Boston. My then-husband enjoyed those pre-child moments, too, took long walks, played drums with a friend, went to car races with his brother on Saturday nights, tried to forget the doctorate he quit. No teaching work in Boston, he said, said we could not afford to stay, said we had to move. No job in Vermont, either, not for a long time. The house was a dream, a true beauty, the village isolated, dotted with dairy farms and cross country ski trails. Hard not to love, but to stay there? Babies came, many babies. I loved them well, loved them as if they were all I had. And maybe then, they were.

I was making enchiladas, my gloved hands dipping the tortillas into the sauce, then filling them with the chicken, cheese. Gloved hands—I had learned my lesson years earlier not to mess with chiles without some defense.

“What the hell are you doing?”

I was making dinner. I was cooking his favorite dinner, our favorite dinner, kids waiting, watching, wanting me to finish quickly. The oven was preheated, the side dishes were cooking, a salad waited on the table already.

“Those are gloves for cleaning toilets!”

I had two pair. The yellow ones for cooking, the blue for cleaning. Both were beneath the sink, on separate sides. Two pair: these were the yellow gloves.

“You are an unfit mother.”

He grabbed the dish from me and dumped the enchiladas into the trash. My older son yelled “NO!” while the others cried. I watched in horror as my husband, ‘till death do us part, ripped open hot dogs, baked beans, told the kids not to move. No one did. I saw the look in his eyes. I thought how I had bought the hot dogs the day before, at a grocery store seventeen miles away, thought how he was lucky there was something else to eat. My son said he wanted enchiladas, and I feared for the kid. He saw the look, too, bit into a hot dog, tears streaming down his face. I sat in the stairwell and sobbed, curled up as tight as I could, looking for a safe place, and there was none.

“If no one is going to eat, it’s bedtime.”

It was 6:30 pm. The kids did not argue, the four of them in the bath together. I went into their room, trying to put our life back together, convinced like so many other times, that it never really happened.

“What the hell are you doing here?”

My husband pushed me into our bedroom. I wanted to say goodnight to the kids. I heard myself protesting as he shut the door on me. I know I was yelling please. The key turned and locked.

“You are not safe to be around children,” he told me.

I thought maybe he was right about everything he said until then. I had told people I needed more help, found help. Four kids under six, one noticeably disabled. A woman came from the school, said we were a family, and had to work together. I cried. He was busy, I told her, had to leave early in the morning, and was tired at night. I was trying. She said I was a great mom. How could I believe what she said, if what he said was true? I begged for help. He told me I was telling everyone our business. I found help, strong women who helped me, who glanced knowing looks first at one another–then at me. He hated the invasion of privacy. I thanked God for the help. He said I was lazy, an unfit mother. I had tried to be better, but trying was never enough, never would be. I stopped making enchiladas, and the love in my heart seemed gone forever.

We moved once more–my choice this time. He gave me one present that last year we spent together. It was a pig.

The pig was a baking dish, made in Chile. It was shown in the Williams-Sonoma catalogue with enchiladas in it, he said. He asked me why I never made them anymore. Until I started the process I once loved, I had forgotten why myself. I never did find those gloves.

Last week, though, I did find the pig on top of my kitchen shelves, never used. I went to the grocery store yesterday, and bought the tortillas, the cheese, chiles. I have it all, watched the kids devour something similar at a Mexican restaurant not so long ago. They are ready for this kind of meal, and at last, so am I. Tonight I am making enchiladas.

Last night, walking at night in flip flops, I realized that the breeze felt … not harsh. Delicious. Summer really is here.

I love summer, but for the shuffle. It would be a wonderful season, were it not for the stress of what to do with children who are no longer occupied throughout the school day. With even the once-affordable YMCA camp topping $400 for two weeks of 9-3 fun for just one child, the options for sending the kids off somewhere for the day dwindle quickly.

So, when a meeting at work Friday required my presence, and I found myself stuck without a babysitter, I told the girls to get dressed, made a couple of phone calls, and headed toward my place of employment.

We dragged in a gigantic box full of art supplies, friendship bracelets in the works, a few snacks. The only thing lacking, as far as I knew, was space. Fortunately, a person in the organization that cohabits our building was out for the day, and the girls quickly set up shop in her office.

My boss walked in to see the kids, and was surprisingly ecstatic. His mantra since I started has been, “We are a human service organization,” and true to form, he set them up on his computer while we had our staff meeting. “You think this bothers me?” he asked, as he went on to tell me about his past experiences with children in the workplace.

The girls were real troupers throughout the morning, stayed relatively quiet as they romped around next door to the executive director of the neighboring organization. But around noon, all art projects were officially boring. Next time we’ll bring more to do, maybe find them work to do as they have for me in the past, assembling packets and mailings.

Maybe this all really will work out. I am looking for babysitters, but in the meanwhile, the best I can do is to work partly from home and fit the kids into my whole life—not just the non-professional parts. Who knows? They may even learn something.

Last year, in the throes of childcare inadequacies, a long commute, and impossible transportation costs, I figured out that I was spending more than I was making. I quit. Driving home from the big city in tears at my frustration over the whole situation, I wondered—as I wonder now—why do we do this? Why can we as a nation not figure out a way for families to be a part of our lives instead of a major inconvenience to the work week? Why can schools not be more understanding and accommodating to the needs of parents who have bills to pay, just as teachers do (but on an entirely different schedule)? Why do we have to spend so much money for otherwise unneeded things, just to keep the businesses running? The entire system just seems doomed from the start.

I have agonized over the coming of summer for weeks now. I do not want to lose my job. Summer is here, and I realized last night that I am glad it is warm, glad my kids are home, glad for the beach, and glad for my job, too. And about that… after all that worried me about my impromptu “take the kids to work day”…

After all my fretting, the thing that surprised me the most was that no one really seemed to mind. I worked, accomplished things. I calmed down, at least a little. When I really believe that for once I will not be admonished for having children but not the money to get rid of them, I will calm down a lot.

I am glad the kids can see the work I do, and even more, I am glad that they can see that they are not excluded from it.

I would be the first to admit that the chaos of my life sometimes requires an intervention. I can see where this chaos does not always fit the workday. It upsets those who have chosen to avoid such disruptions in their life, and some might argue that attending to children’s needs is not appropriate while trying to do another job. Sometimes I argue this point quite emphatically to my own children, particularly when I am on the telephone, and it is important, or enjoyable, and I want for them to get their own snack. Sometimes I feel my children are inappropriate, too. Still, tomorrow is Monday, and now, at 1:15 pm on Sunday, I still have not found a babysitter. So, working from home, maybe going in for a half hour to pick up papers and check in while kids wait, I can manage just that right now. And despite the interruptions, I have always managed to do a lot.

Some are restricted simply by the capacity to get to an office, to stay for eight hours away from home. Some have so much to offer to the world, if not for being locked away because they do not fit into the rules of the workplace. Some of us in this situation can do a lot, contribute a lot. Our lives are chaotic; the world is chaotic, and an efficient life simply cannot ignore this fact forever. Instead, imagine that we embrace that chaos, let it in. Maybe it is not as unworkable as we think.

Waiting on the World to ChangeJohn Mayer

“Is campaign a kind of alcoholic drink?”

My daughter has been fascinated by the Democratic nomination process, and now by the idea of running mates. She has one special interest: the school day should not be longer than it already is.

My twelve-year-old son laughed later when he heard what his sister had said. “No, no: you mean champagne!”

“Campaign is what is making everyone act so weird. I mean campaign!” my daughter insisted.

The party continues…

In a few short moments, the three kids and I will head out to Dairy Queen. It is a treat, to be sure, but symbolically it is an attempt to salvage a little joy from this weekend. I really don’t care about ice cream tonight; I just want to leave the house and have some feeling of being a happy family.

I have come to realize that the same issues that made me give up custody of my son with developmental disabilities in August are the same that may make it impossible for me to take him overnight at all. Those issues all revolve around one thing, and that one thing is perhaps the most damning defining moment for a person with a disability.

That one thing is another person. It is absolutely necessary to have more than one adult to take care of my son at any given time. This does not require a mere warm body. To help, the person needs to be vigilant about safety issues, but also patient enough to withstand a bite, a grab, a few solid hours of changing pants if his tummy is upset, or sitting outside his room on a wild night that he cannot fall asleep. It takes a person who will show up at the times that are likely to be challenging, and show up reliably. It takes a person who doesn’t mind the other kids and the holes in the wall, the clutter everywhere (which would be less of an issue with more help). It takes a strong person, who can help me get him out of harm’s way if he flops on the ground—sometimes inconveniently—and refuses to move, a person who can do this all with a smile, and some degree of understanding. It takes a kind person. It takes a person who will be all those things for the going state rate of $10.84 per hour… well, assuming that my son’s present custodian reapplies him for the MassHealth benefits that pay it.

Last year, when I was the custodial parent and called the shots, I was offered an opportunity to return to school in a prestigious disability program. I would never have attempted a demanding fellowship if I had not been incredibly lucky at first. A full-of-life, smart, loving young woman came from miles away to help me care for my son nearly everyday for several months. For her, as much as she liked us, it was a career move, and a good one at that. Life was good for all of us, and we laughed a lot, had fun. But it was inevitable that she had to move on to greener (and more lucrative) pastures when opportunity called.

Before she left, I started looking, and did not find in the six weeks I knew she was leaving. Within a short time, I was spending most of my time without children advertising the position in every thinkable way, then interviewing candidates. Some interesting people came into our lives for moments: a Harvard pre-med student, a part-time nanny who was working on a master’s in social work, a stately woman whose father had been killed by Idi Amin, and many, many more. Before finding help, I conducted thirty-two interviews, hired ten marvelous candidates (all of whom quit by the first day after coming for orientation), fired two (negligence does not even begin to describe..), and tried to write a grant for a project that would link college students and families of children with special needs. The project seemed doomed from the start in the midst of various regulations and other difficulties, not the least of which was the prospect of defining myself as a non-profit organization. It seemed a bit much. I sat in on organizational meetings around a state law that had been passed to address the problems with this workforce. As my studies progressed, I shaped my work around this issue, one that affects so many people. I was exhausted, and still had no answers, not even from the highest levels of state agencies. At last, months later, we finally found one person, a caring young lady who had known my son for several years. Relief…

After one difficult evening, though, she failed to show up for work the next day. She had hurt her back, she said in a message, and I called to see if she was all right. She never answered her phone, or email, to me again. The fallout was jarring to the kids, and to me. I advertised again, somewhat cynically realizing that the people who enter our home also enter our hearts. I started the quest again, but this time had no luck. Ultimately, I quit a job I had taken at the end of my fellowship, telling my supervisor through tears that I could not financially support my kids and care for them, too. And then, I made an even more difficult decision, the hardest thing… It was perhaps the only choice, but in so many ways it has always felt like the worst choice.

I gave up.

I realize that this statement goes against my happiest thoughts about my family, the ones like those I wrote several weeks ago, finding the joy in an ordinary day. The day I described there was an ordinary day… extraordinary, to be honest.

The truth is that there are moments that are hard, grueling, moments when the facts of toilet training deficiencies and behaviors resulting from nonverbal realities can bring me to my knees, literally.

I posted nothing here last week about Mother’s Day. Recovering from another back injury after a walk with my son, I was not in a joyous mood about the holiday, despite the efforts from all of my kids. They tried, as much as kids can; they really did. It was not my weekend to spend with them, and changing things around for a day never works very well; it is confusing, most of all to a child with autism. I have never had a bad back, but I cannot lift an obstinate 120 pounds, either.

It is moments like this that destroy the mother-child bond. I find myself less of a mother as I admit this, but I can feel it for days after something bad happens. I feel it in my recoiling when my son hugs me, my reluctance to endure another bite tearing me apart as I want to love him freely and without hesitation. Oh, I know he does it not out of cruelty, but out of frustration, in moments that his ears hurt, or that I failed to understand him, or that he just needed to feel that sensation for some reason I can only try to acknowledge.

Agencies across our Commonwealth, across the country, struggle with the lack of funding for people who have no voice, or a quiet one. Families besides mine are being ripped apart by lack of support, despite the best efforts from groups that lobby for the small legislative victories that lead to systems change. Maybe attitudes change along the way, and pave the way toward better times. But when money is tight and economic predictions are dire, altruism often takes the hit first.

There has to be a better way.

Pistachio ice cream is my favorite. The kind I like may not be the finest, but it is the greenest, has the most almond extract flavoring—way too much, but kind of addictive—and is filled with salty pistachios. Friendly’s pulls off this combination rather well, especially considering that the brand has been on sale for the past couple of weeks.

Remember when you were a kid, and you reached down in the cereal box, all the way to the bottom, to find the prize. My brother and I used to pour ENORMOUS bowls of cereal, professing outrageous hunger. We had a yellow Pyrex bowl that came in a set with smaller ones, red, green, and turquoise. The turquoise was the egg-mixing bowl, and the other two broke before I remember. The yellow one was used only for popcorn and potato salad. We poured the cereal into that bowl. Once when we tried that trick, my mom made us eat what we had poured. From then on, we waited more patiently for our prizes.

Usually it was all for something worthless, too, not unlike a Happy Meal toy. Once in a while, though, a Matchbox car could make it all worthwhile.

Jump forward a few years, and the prize is pistachios. Tonight I am not content to have a regular bowl of ice cream, but am hunting through the box, ignoring ice cream just to get at them.

Of course, picking all the good stuff out is not very adult of me. I do know that when I do that, the rest is more or less spoiled—or, at least, not as special without the most desired contents still inside.

But sometimes, greed gets the better of me, going after the good stuff all at once, leaving the rest to face later. And yes, it is worth it.

Just don’t tell my kids.

It was early enough for Target not to be too busy, I found a good parking spot (well, the handicapped placard does help), and all five of us were in a great mood. We were buying some promised new toys for the yard, charcoal, marshmallows, and a few other necessities for the first really warm weekend, the beginning to April vacation.

My son was walking as we entered the store, but we had brought the stroller, just in case, as I always do now in any place that is big and has fluorescent lighting. He strutted in, looked around, then looked back at me and climbed in the chair. We went on our way.

It really was a good day, with everyone in a fantastic frame of mind. Then, something happened. It was not a mean thing, or even a thoughtlessly cruel thing. It even surprises me that I am still thinking about it. Still…

We were in the outdoor toy section when a man (maybe around my age) and his son (probably around five years old) came down the aisle. I saw the boy look at my eleven-year-old son in the stroller, just about to ask the inevitable question, and his dad took his hand and guided him quickly away from us.

Later, looking for marshmallows, we saw them again. By then, my son was bouncing in the chair, laughing, as he often does when he is either excited or overstimulated (and big box stores nearly always do it). He was all right, though, but I could see the boy’s concern. The boy tugged on his dad’s jacket. His dad kept shooshing him, as he quickly navigated his son and himself out of our path.

I noticed, as we made our way to the cash registers, that the dad was staring back at us from a farther line.

Was it that bad?

Well, I sometimes wonder. It was still a glorious day, the type you know was good when night finally comes, and the kids are whispering in the dark, then are suddenly quiet because they are too tired to stay awake longer; when you, adult, fall into bed at night all sore and smiling and snuggling into a bathrobe, warm and exhausted, too, after the kids have fallen asleep; when the laundry basket is full of clothes that are absolutely, positively, filthy and smoky, and covered in grass stains. We had that kind of a day. We went home from Target, turned the music up, laughed, blew bubbles in the yard and played giant Frisbee games. Actually, it was my older son who was having the tougher day, trying to figure out where he could find enough wheels, wood, and a motor to build a go-kart—and frustrated when I was less than encouraging about that particular plan. It was a fine day, a good day, a typical day for nearly all the families around us. And still, that father’s stare stuck with me.

I wonder, sometimes, does it really seem that bad, this life? When other people see an eleven-year-old boy retreating to a stroller (didn’t know they made them his size?) to make it through a store, but unable to tell anyone about it because he can’t talk… when they see the meltdowns, or actually hear of the difficulties, does it really seem that bad? Do the non-staring people feel that way, too?

Sometimes, it’s been the opposite that has stuck with me: the overly helpful people, the ones who are trying, who still don’t know what to do. But they do try; they don’t run away. There are the complete opposite, the ones who look for that moment for their own advantage—a Kodak moment, a charitable act, a momentary kindness that makes a statement but is not so kind—those who seek the shunned, emphasize the difference in some hope of making themselves seem better. I don’t mean people who really help, who really care—only those who think that they seem like good people if they pretend to. That is perhaps the worst.

I realize the difficulties in knowing how to act around a kid with disabilities, much like moving to a new country. What are the customs? What did they say, and did that gesture mean something? Are these people nice? It’s a learning experience, emotional, not always quite right. It’s not within the comfort zone, and yet, it does not have the same thrills of living life that is conventionally adventurous… at least, at first.

I have told the tales of trying to meet these kids’ needs, of being frustrated through various agencies’ incapacities to do the right things, or to be funded enough to do them. I have told of the heartbreaks when tough decisions have to be made, when things fall apart. But somewhere in there, I hope I have conveyed the many joys. If I have failed to express those enough, maybe I should try harder. I fear I have frightened too many people.

Challenging, yes, it is. But isn’t life that way for us all? Not unhappy, not bad, though! The joy of yesterday—that simple day—warms my heart, thrills me. It is difficult to explain why. When things are so wonderful, do we ever think to wonder why?

We were happy, and I suppose that is why the father’s stare stuck with me. The stare, I believe, was one of confusion, one of fear, one of pity. I have indeed seen the look before, even heard the words that tend to go with it. And yet, I rarely have the right response to it, or even know how to deliver that response if I have it.

I sometimes wish for a more forgiving world, for one that didn’t mind difference, for a world where the richness of life accepts the difficult parts, where we can acknowledge that the best things are never simple, and where the fear of facing my family did not prevent people from wanting to get to know any one of us individually.

My family really is like any other. It’s just not so obvious.

A few evenings ago, I heard a story—a funny one, as it was told—about a teenage boy’s mounting anxiety when faced with orders for a bloodletting… er, blood drawing. It could have been my kid.

Anyway, you all know how that routine goes. If you can go directly to the lab, it’s a lucky day! If your doctor is particularly kind and has the nurses in the office do it right then and there, the sun shines a special beam and birds sing. If, however, you have to go to the hospital, be prepared to wait, register, get the little bracelet put on after answering questions that range from your name and insurance company (what they really want to know) to what your preferred religion is. You sign swearing that you understand HIPAA (does anyone understand HIPAA?), and that you’ll pay your bill when all is said and done. They tell you that you are free to go to the lab, usually down several confusingly marked corridors. Then, at the lab, you wait again, probably with a number. If it’s a big hospital on a busy day, you may wait for hours.

Now, try doing that with an anxious kid. No, I don’t mean one who keeps tugging at you saying he’s bored and doesn’t want to be there. I mean one who is in real danger of being admitted because of the stress the whole ordeal is causing. You’ll know by the sweat, then the clammy cold hands and the quick breathing. Add some communication challenges, a little obsession, a little compulsion, and the entire waiting room is apt to have a meltdown right there with you.

So, as I heard the story of one boy’s total and complete breakdown through this ordeal, a thought came to mind. As difficult as the world is to navigate from a wheelchair, most people have some vague notion that places like hospital labs are supposed to be accessible to people who use them. If a lab is up any stairs, there is a ramp, or an elevator. If the rules say that patients have to sit in those chairs with the fold down tables attached so the phlebotomists can find veins more easily, the rules may bend a little so that the patient doesn’t have to move from a wheelchair. Accommodations can be made, and in fact, they have to be made, according to the Americans with Disabilities Act. It’s far from perfect, and it’s true that some people still don’t get it, but most people do at least acknowledge that the world is difficult for anyone who has a physical disability.

So why can’t we accommodate people who experience other sorts of disabilities? Waiting for a potentially painful procedure is traumatic for someone with severe, diagnosed anxiety. Isn’t this an accessibility issue, too?

Walt Disney World, I hear, has a special entrance to rides for kids with special needs, so they don’t have to wait through long lines that would make it impossible for them to be there otherwise. If you have ever waited in a line with a child who has autism, this service makes so much sense. It’s not favoritism anymore than a ramp is. It really is an issue of accessibility, and it really is the law. Amazing that Disney gets it, but a hospital doesn’t.

And besides, when someone is obviously struggling a lot, how much nicer would the world be if we could just bend rules enough—even when it’s not a legal matter—and think beyond our own experiences? How much better off would we all be, if only we could try to be kind just a little more often?

When my son’s probation officer called back, he said that he had also had trouble getting appropriate responses from any of the state agencies that would normally take responsibility for providing some support…

… Oh. I didn’t realize you were reading. I was just talking about my son. Well, you saw what and whom I was talking about. I am a bit embarrassed now that you know about the probation officer, all this mess.

But really, you don’t know. It seems that in years past, my son would have been called a Stubborn Child. Now he is simply a Child In Need of Services, but he still had to go to court for it. The school asked the truant officer for our town to file a CHINS, so we had our day in juvenile court.

Now, to explain a little, “CHINS” really does stand for “Child In Need of Services.” It is a somewhat euphemistic idea created in 1973 when people decided that the “Stubborn Child Law” was not quite appropriate. Indeed. The Stubborn Child Law goes back to olden days, really olden days:

“If a man have a stubborn or rebellious son, of sufficient years and understanding (viz.) sixteen years of age, which will not obey the voice of his Father, or the voice of his Mother, and that when they have chastened him will not harken unto them: then shall his Father and Mother being his natural parents, lay hold on him and bring him to the Magistrates assembled in Court and testify unto them, that their son is stubborn and rebellious and will not obey their voice and chastisement, but lives in sundry notorious crimes, such a son shall be put to death” (Statutes of the Massachusetts Bay Colony, 1646).

Drastic? I’ll say. The law as it evolved included children younger than sixteen, but to be fair, none of them was put to death. Still a little scary. The CHINS, unlike the Stubborn Child Law, does not apply to children over the age of sixteen, nor does it recommend death, but it is still a court thing. It is sometimes filed by parents in a last-ditch effort to keep an out-of-control kid safe. I always thought of the kids who were staying out all night, bringing home dangerous friends, doing drugs… Truancy fits in there. And the idea, I believe, in changing the Stubborn Child Law was to address the causes of the behavior and get kids help. But when someone has identified that children need services, is the Department of Youth Services—DYS is another name for the juvenile correction…er, kiddy jail… system—really the right place to go to ask for help?

Our little foray into lawlessness began after my son’s hospital stay. In November of last year, just a few days before Thanksgiving, my son told his therapist that he thought life was worthless. So, after nine grueling hours in the middle of a busy emergency room on a Friday night, my son began his two-week stay in the hospital’s locked “child development” area, a.k.a., pediatric psych ward.

I suppose the stay was intended to help him–it should have–but in the end my son came home with new medication that did not end up making anything better, the knowledge that his new psychiatrist never even cared enough to return phone calls while my son was in the hospital (we stopped seeing him soon after), no more support services, and a new-found feeling of failure at real life that seemed to take over. Even as counselors, and school staff, and I expressed dismay at the inattention, appropriate agencies that were geared to give my son that post-hospital help simply pointed fingers at one another, saying it was not their territory. His therapist took another job, and my son was not reassigned to a new clinician throughout the holidays, perhaps the hardest time of year for him. This negligence is not what I understand is supposed to happen, but it did, and the hospital itself did not exactly provide much guidance in the ways of what to do once my son was back at home and in the community.

What the hospital did provide, to the school if not to me, was an indication that my son would probably be tardy fairly often. There were no suggestions for how he should get to school if he missed the bus, or how I should work on those days, or how I should even manage to maintain our lives, but the hospital did tell the school that it would remain difficult for him to get up in the mornings. They did not say my son should not go to school, but after a while that is what started to happen, especially when he was faced with the notion of his classmates noticing him walking into school late.

No positive reinforcement seemed stronger than the pull to stay in bed. The oft recommended “get out of bed NOW, or else…” strategy was a total flop, resulting only in my own exhaustion and a lot of angry exchanges. The most draconian consequences I could conjure up would not push my son out of bed on those days, and on top of it, those consequences seemed uselessly cruel. After one call from the truant officer, who asked to talk to my son and then told him to get to school, or he’d take him to court, I drove the car stoically to the school, let my son out at the door, and promptly broke down in tears. My son was not budging from his bed after twelve or more hours of sleep. He was cranky when he was awake, and for all intents and purposes, no one who could really offer the level of support he needed really seemed to give a damn.

The school was just being a school, and actually, a very nice one. At a meeting, they shocked me by recommending an out-of-district placement—something that rarely happens in the land of special education without a fight. I was not sure–did we need to go to this step? The school also informed me that they would be filing the CHINS. Sure enough, the following Monday, an appointment notice arrived in the mail from the juvenile court. A friend offered her research results: I could lose my parental rights! (Amazing what you can find on the internet.) I went without sleep that week, even as I tried to stay calm. The Friday court date arrived.

The juvenile court is not far from my house—I must have driven past it hundreds of times. The complex it is in houses another agency that no one ever wants to need: the Department of Transitional Assistance (welfare). Nestled in around a pond, the property used to be dotted with Victorian cottages for vacationers, a boat dock nearby. These days, there is a dump across the street. The building itself is nondescript: a strip mall of human tragedy.

Fortunately, my son’s probation officer was pleasant–the school had called ahead to tell him that my son was a “good kid”. He kept the whole affair informal. I did not lose my parental rights; on the contrary, he asked me what I wanted for my son. He also had the words that have motivated my son to go to school on the worst of days: “Go to school. It’s the law. If you break that law, you have to go before the judge, and you don’t want that. You don’t want to go before the judge: he doesn’t have a heart.” Extreme words, perhaps exaggerated, too–surely some judges have hearts–but I think the probation officer wanted to help my son. It’s nice to know sometimes that somebody cares.

So, we remain, still in limbo, still waiting for the next step, the next school, the right place. We have no answers, and even a probation officer cannot get state agencies to respond. But then, why should they respond to our family when our hardships are not so visibly clear? In the headlines just yesterday, a state agency ignores the obvious: a seven-year-old boy tells a caseworker that his mother’s boyfriend has burned him, and the caseworker ignores it…

Or perhaps the caseworker did not ignore the red flag. Perhaps she (it nearly always seems to be a she) went home every night wondering why she makes the suggestions that go ignored higher up. Perhaps she wonders why she bothers going into work everyday when budgets do not allow the things that would really help, much less prevention, when caseloads are overwhelming, when the next one always looks worse. Perhaps she burned out months ago, and is holding on to her own sanity for dear life.

Why does a family with a bipolar kid on the edge deserve any better treatment?

There are many reasons why we all deserve better treatment.

For one, pointing to a problem and then walking away is tantamount to saying that the problem is not that important—or worse, that it is not a problem. Victims become at greater risk with the attention; walking away is setting them up for blame… and more abuse, or worse. Families trying to help children with mental illnesses already suffer from systemic abuse, calls for help unanswered, blame transferred to parents. Children with behavioral challenges, quiet or disorderly, go without services, ignored, made outsiders—outlaws—as they become indoctrinated into a system that hardens them and makes them expect less from life, less from us, and less from themselves.

Do we mean to push people out, by deeming them dangerous? I was astounded in the court building at the number of posted reminders of the ADA, the Americans with Disabilities Act. Yes, we were to remember that we deserve access, equal access, to the court, regardless of our disabilities. But one question came up continually.

“the continuing existence of unfair and unnecessary discrimination and prejudice denies people with disabilities the opportunity to compete on an equal basis and to pursue those opportunities for which our free society is justifiably famous, and costs the United States billions of dollars in unnecessary expenses resulting from dependency and nonproductivity” (Americans With Disabilities Act, 1990, Title 42, Ch. 26, Sec 12101(a)).

We may be guaranteed access, but what if we do not belong in court to begin with? What if the crimes we are charged with are not crimes? What if crime itself is determined within a system of bias?

It is estimated that sixteen percent of the nation’s inmates have an identified mental illness. There are certainly people among those sixteen percent who are undeniably dangerous, but I wonder if prison prepares them for any future, acknowledges their illness, or if it just keeps them out of our view, still dangerous–dangerous mostly to themselves. That day, sitting in court with a kid—a smart, sensitive kid—whose depression shut him in, literally attached him to his bed, I could not help wondering how many others started their careers in the criminal justice system just like this.

We all deserve better.

My son has a rather extreme case of needle phobia. Fortunately, his pediatrician is a patient man who also has a sort of cheerleader spirit about him when it comes to uncomfortable medical care.

So, at age ten, when my son had his finger pricked to check iron levels, the doctor went to fetch “the good nurse” (it probably could have been any of them), and came back to hold my son’s hand. Two years later, that tactic was not enough to get through the tetanus shot. It had also been several weeks since the doctor had ordered blood work that might yield clues about the fatigue that has made it nearly impossible for my son to get to school in the morning… “Why don’t we do both in one visit,” the doctor said. So we did.

Now, this took a special appointment, two attractive nurses, a juice box and a bribe to accomplish, but we did get through it, and as my son’s color came back into his face, we drove to Moody Street so that I could make good on my end of the deal: I was taking him to the Construction Site.

The Construction Site was as near to paradise as any store could be for a kid like my son—or my brother, for that matter. I had discovered it entirely by chance looking for more parts to a system of toys that my brother had, in fact, given to my son for his birthday. I googled “Capsela,” and found somewhere with a good selection. When I began to place my order, though, I noticed that the store was in Massachusetts. We were new to the state at the time, so I did not realize that Waltham was fairly close to where I lived. I was up for an adventure, and got out the map to find it.

The moment I walked in, I was surrounded by a wondrous world of Gemütlichkeit. I remembered Munich: the orange tile rooftops, the beautiful Volksbad, friendly, healthy-looking people, and the mechanical things that seem to run the whole show. Sure, the Glockenspiel is a tourist thing, but it is wonderful, and the city seemed like a real-life version of Gepetto’s workshop. The Construction Site brought it all back to me, and added a “Hooked on German Kitsch” style music selection to complete the sentiment. I was hooked.

I also realized that I absolutely had to take my son there. My son has always been good at building things. He used to draw plans of machines that he saw in movies (the chicken pie machine from “Chicken Run” comes to mind), and then made prototypes from blocks, Lincoln Logs, Legos, or whatever else he could find. The detail he put into these endeavors always stunned me. When we lived in Vermont, we spent hours in Willey’s General Store hardware department in Greensboro, rummaging through dryer venting materials, light switches, tubing… At home, broken toasters, radios, clocks, all found their way into my son’s room for investigation, if not repair. Vacuuming his room was never a quiet affair.

So, of course, he loved the Construction Site, and of course, we went there often. Or we used to.

For all the wonders of the store, it also had the sorts of toys that ate through birthday money fairly quickly. Time was a factor, too… and computers that let you build neat things and draw. Actually, a good portion of time went to playing with the toys my son had bought there years ago–not to buying new toys. Other interests came into play, too, new challenges, and I realized when we drove up to the store that we had not been there in almost a year.

So, I was surprised to find the “For Lease” sign in the window, and a much smaller inventory, boxes stacked in corners, Bionicles 25% off.

The Construction Site is not moving; it is going out of business.

Maybe it’s a sign of the times. Maybe everyone is busy and can find Legos online or at Target. Maybe those European imports simply cost too much as the dollar drops. Maybe there are fewer dollars floating around for toys in general. My family certainly feels that. I know it’s selfish, but I hoped that people who had money to spend were still spending it there, so that we could have our moments to dream, to window shop, to see the beautiful toys, and sometimes to take something special home.

I find today’s thunder soothing, like a cup of hot tea, like promises of spring sometime, hope—always hope.

The rainfall comforts, acknowledges the absence, washes away the cold snow that covered the gap left behind, the unanswered questions—cold snow, no virgin snow now, but a tired, stained white spot in my yard, now nearly melted, dirty leaves settling into the yard, becoming a part of it. Beneath the snow, somewhere, spring.

My little girl asked me this morning if I knew what she liked about rain. She said she likes that thing that happens when one drop falls on a quiet puddle, and it all spreads out. Rushing through the streets, late, I was surprised she noticed the change in the water, but it made me slow down, look at it, look at her again, just look.

Ripples cut through the surface of a lake, and yet the lake remains.

The last straw is when we run out of milk. No cereal. No healthy teeth and bones. No decaf lattes from that beautiful Expobar sitting in my kitchen.

So, having managed to get my son on the school bus for the fifth time since his hospital stay, I celebrated by heading to the grocery store.

Now, before I continue on down to the corner market, a bit of an aside. I hesitate, although only slightly, in revealing this much here, of all places. I mean, I have to wonder if there is a feeling of shock and dismay—or worse, pity—at the idea that I cannot get my older son to go to school many days because of his mental health issues. He is smart (which is how he still managed to get on the honor roll), funny, and not noticeably impaired when things are in the right balance… Still, I have found it much more difficult to bring myself to talk about him than it is about his brother, whose disability is developmental, intellectual, obvious—and not stigmatized in nearly the same way. Ah, but in not talking about the bipolar stuff, I stigmatize, too.

Stigma is a term that fits well when you consider the Latin/Greek origin: “tattoo indicating slave or criminal status”. I wish I could say that things have changed much in our world today. On the contrary, I find that when my son with developmental disabilities missed nearly thirty days of school a few years ago, it was at the insistence of the school staff that he stay home because they could not do anything with him. For my son with mental health issues, though, numerous absences (despite the school’s patience and help) may quickly become a legal matter, a crime… like so many other things. A psychiatric admission to the hospital is nearly impossible without entrance through the emergency room, and for so many, a call to 911 following an act of violence, self-injury, vandalism. A crime… but in these cases, a desperate plea for help, an acute illness demonstrated in frightening ways. What more can we do?

There is attention to this problem, but also resistance. Many posts ago, I mentioned a neighborhood’s resistance to a group home for adults with a Prader-Willi syndrome, more in the realm of developmental disability. What I learned later is that the owner of the house is a group that also provides homes and services to adults with other disabilities, including mental health issues. If some neighbors were only wary about any sort of developmental group home inhabiting the nearby real estate, they were positively aghast at the thought of recovering substance abusers or mentally ill individuals living next door. Again, the stigma, and in a world where in normal houses live the teenager who parties incessantly, the aunt who has lavish parties for weeks then retreats for even longer, the many among us who hide our afflictions, for fear of being different, of being noticed, of being shunned… And is it any wonder, when we ourselves fear those who are considered different?

If we do leave the denial, if we have to, finding help is not easy. I know this well, after repeated calls to try to restore services lost in a struggle—services not so easy to get in the first place. Calls to overburdened state agencies go unanswered, even as the calls turn to letters and move up the chain of command. It takes calling a representative and a commissioner, and then, for what? Psychiatrists who prescribe and then never return phone calls for day after day; others who are afraid to take on patients who present too great a risk—a liability; others who do not even take insurance. And then again, a few gems among them. But while we are on waiting lists to see the gems, in my frustration, I wonder again if omega 3s and martial arts and better feng shui could really be a cure-all instead of all this nonsense.

I go through this all in my head, and then turn to the things in my car, the less cold breeze in the parking lot that takes me back to summer breezes I remember so fondly. My car has made its way to the Market Basket, and life is good.

I really do enjoy my trips to the Market Basket. For one thing, it is far cheaper than the supermarket that is closest to my home. For another, I enjoy seeing so many different people. On most trips, I hear little English, but today’s trip was noticeably populated by older couples, most of whom did speak English, and most of whom were quite friendly, although I did notice a few strange looks when I turned around the coffee aisle just unable not to sing along with Andy Gibb.

You know, I still cannot get the song out of my head, and also cannot help thinking of another way to do it. I pondered that this evening, too, again imagining something on the back of a piano, but alas, a torch singer I still am not. “I Just Want To Be Your Everything” is a great song for shopping, though, and it really hit me as I found myself wanting to chant “Come On Eileen, too-loo rye-aye,” that supermarket music has certainly changed since I used to drag along with my mom through Vince’s IGA in Yorkshire Plaza, right on the corner of Laclede Station and Watson Road (which is really Route 66).

Grocery-store music then was characterized by rearranged Beatles melodies, even though most of the ones chosen barely needed it (“Yesterday,” “The Long and Winding Road”), and other pop songs that were rendered nearly unrecognizable by the arrangements… until in a sickening moment in the dairy section you finally understood that it really was a string version of “Havin’ My Baby.” Trips to the store are different now, and maybe a bit more disturbing.

Still, I am fascinated by the selection of tropical produce: chayote, malanga, batata. I like paying $.99/pound for apples instead of $1.49. I love being there with all the boxes moving around the aisles, and the woman in the electric cart asking me if I could reach and grab a can of Folgers off the top shelf, and the man who is telling the butcher not to hand him that hamburg because he’s on a fixed income and that he just doesn’t know about Hillary, and the woman telling her daughter, “Mira, ven aqui,” as the little girl sheepishly puts a box of vanilla wafers back on the shelf.

These grocery adventures are pleasant in themselves, but the soundtrack is part of the experience. Still, although I enjoy the tunes, I’m not really supposed to acknowledge that I actually noticed them. The music has a more insidious purpose that is really unmentionable. I realize this is a fact. The whole brainwashing thing, innocuous enough, it would seem, because it is everywhere. In the midst of it, though, I realized that I was barely noticing at all how happy I was that my kid actually left the house without a fight, and gave me a hug before heading down the street to his school bus stop, on time, and that the day was warm, and the other fifty thousand things that were going on right in front of me in that store because it had a soundtrack that kept me in a certain frame of mind, somewhere in the late 1970s to mid ‘80s, and made me not notice so much else. Well, Muzak’s philosophy is for me to ponder later, or to leave perhaps to the New Yorker, where it has been pondered already (by David Owen, “The Soundtrack to your Life,” 4/10/06).

It does make me think about comfort level, though. How does it feel to go into somewhere with so many people, all ages, nationalities, abilities, all collected there to hunt down the foods that celebrate our differences.. and yet to hear a soundtrack of my young adult life in the Midwest? I wonder.. what if they added a few different songs, something different, from another country, something I have never heard, just thrown in? something else… or perhaps, just no music. Just real people and real food, together. What a concept.

Larry the squirrel has taken up permanent residence around our dining room window. He has made himself notable by keeping up a corpulent physique, as you can see. He hangs out on our fence, and occasionally takes a daring leap, holding onto the outside of the window, peering in. I think he likes us. I don’t know why Larry was the first name that popped into my head for the creature, but my son thought it was funny, so it stuck.

You may wonder why I have had so much time on my hands to name squirrels, and why my son is home helping me name them. Well, I had fully expected to be back at my normal routine by Wednesday at 9am, but that was before Wednesday at 5am. It was at just that moment that my older daughter produced tangible proof that her tummy felt sick, as she assured me it did before she went to sleep the night before. She was staying home. Another hour later, her brother gave me evidence that he, too, could not be in school. That left one little first grader to return, all alone, on that big yellow bus, after ten days away. All alone, she reminded me. She started to make up a song about it. She does that kind of thing when she wants to make a point.

Even Larry was glaring at me by the end of it. I drove her to school.

I know that my little girl was especially concerned that her sister would spend the day learning the songs from High School Musical II, which they had just purchased themselves on Sunday. She was afraid that big sister would be the first to know “Humu humu nuku nuku apua’a” all the way through. I think my first grader really wants to play Sharpay herself.

No, I don’t think she wants to; I know she does. In fact, she told me that her new nickname is Ashley. She has taken to wearing sunglasses around the house, puts on leotards at night instead of pyjamas. When she reclines to go to bed, she breaks into “Fabulous,” and tells me, “I want MORE!” I’ll admit, she isn’t half bad. Between this and her sister’s Britney imitations, their brother has been groaning a lot. If I start in with the torch songs, he usually turns in early and puts on his earphones to Linkin Park… and he sings along (although he denies that).

This all started a long, long time ago, but really came to life last spring, when my little girl was a Munchkin in the Framingham High School production of the “Wizard of Oz.” It was there that she discovered that it is “not scary at all” to be on stage. In fact, she told me it was really fun, because you can hear people clapping, but when the lights are on, it is all about the “world up there,” as she called it. Her one regret–no, two: she didn’t get to be Dorothy, and she did not get to be in the Jitterbug scene.

Now, I mentioned a few nights ago some highly idealistic ideas I had long before I actually had kids about how they would be spending their free moments…. something about rehearsing Hamlet, I believe. Now, Shakespeare would be fine, not to mention impressive, but what I didn’t realize when I was twenty is that kids need to be kids. In other words, all those teachable moments I was envisioning really were more about who I thought my kids should be instead of who they really are. I just had no idea how special they really would be.

I may complain a lot about my kids’ not liking a lot of the music and musicals and movies and food and so many things that I think are just wonderful… But what I do love is watching them get really excited about anything that allows them to express themselves. (Um… except tattoos. And probably some other things they will ask me about in the next few years… I hope they ask me…) At this point, though, if it’s High School Musical and Hairspray, and they are also making up their own things about the little girl alone on the school bus, and the Pegasus and the unicorn, I am just going to enjoy the show. Larry the squirrel may enjoy it, too. I would not be surprised if there is a song about Larry soon.

And as for my little girl’s lost practice time, it turns out there were no “rehearsals” yesterday. My older daughter was pale, asleep, and feverish all day, and my son looked pretty pale most of the day, too. Larry was the only one up for theatrics, and even he wandered off for a rest at some point. Now, a day later, everyone seems well again, ready for rehearsals, ready for school, ready for life. And I am ready for bed.

Happy New Year!

I came downstairs this morning, flipped on the radio, and I think I heard a Latin version of “America the Beautiful” on vibraphone. They never announced what they played, but I’m sure that’s what it was. It was just too early for that kind of tomfoolery.

But, I must say, it did finally get last night’s anthem out of my head. After leaving the Worcester DCU Center a few minutes after we arrived, one among us hyperventilating and two crying—and that in itself more than a little tragic—my girls asked if they could listen to Kiss 108 on the way home, too. I cringed, “Oh gee, girls, isn’t that what we listened to all day?” but quickly said yes. Yes, anything.

They said they were counting down the top songs of 2007, but I could have sworn we heard exactly the same show on the radio the night before. Yes, we spent a long time in the car on Sunday evening, too, when an ordinary trip to CVS for antibiotics and antipsychotics turned into a two-hour joy ride through the western suburbs. Admittedly, the trip was not exactly a joy, given that the pharmacy technician had made a slight error in the names of my two boys. Rather than just assuming that their last names would be the same and the first names different, she apparently put them through the system with the same first name and different last names. It took them a call to my ex-husband, who called me (why they never called my cell number, which I gave to them at drop-off, I still do not know), three calls to one insurance company, and two to another to straighten it out, all while we kept coming back in half-hour intervals. Thank God for drive-throughs. But then, we heard a lot of Britney.

I must have heard that one really popular song before—no, I know I had, many times—but not repeated in such a short span and not day after day after day. We got home last night from our short-lived revelry (we at least saw fireworks), and after posting something here that I had written earlier, then popping upstairs to watch “Ratatouille” with the girls before bed, I had some unexpected time left to sit and think about 2007. But I wasn’t thinking, or even meditating. The year was about to end, and there I was, in the bathtub humming strange songs.

When I realized what I was doing, it really bothered me, and it also unsettled me just a bit that one thing I had learned on the last night of 2007 was that my older daughter does a fair Britney imitation. (She did nearly shave her head once, too, but that was when she was four, and her brother was responsible for starting with her bangs. I think that my blood-curdling screams when I first saw her hair all over the floor and the scissors in her hands will prevent any similar episodes in her adult life, but may also sentence her to a lifetime of therapy.) The thing is, I wasn’t sure she was getting all the words right, but I was also glad that she was not singing what I thought I was hearing.

I couldn’t go to sleep like that, though, the tune going through my head with no clear idea of what the song was about. I came back downstairs, and spent a good hour or so of my New Year’s Eve googling Britney lyrics. Reading the words aloud made me feel like Steve Allen.

“I’m Mrs. Lifestyles of the rich and famous
(You want a piece of me)
I’m Mrs. Oh my God that Britney’s Shameless
(You want a piece of me)
I’m Mrs. Extra! Extra! this just in
(You want a piece of me)
I’m Mrs. she’s too big now she’s too thin
(You want a piece of me)”

Oh dear. Somehow my effort to influence my kids’ taste in music seems to have failed almost as badly as it has in the food category. My kids used to like things I listened to (and things I cooked, too). I know I reported last summer that my kids’ acceptance of my own favorites seemed to have fallen off in the folk music genre, but I did not realize that their taste had gone so far into Britney territory. Even more disturbing was that after I found the lyrics, I also found the video for the song on YouTube, as well as two remix versions, and I watched them all the way through.

My daughter, the would-be Britney, has just come downstairs after her bath to inform me that she finds my recitation of “You Want a Piece Of Me” insulting, so I think this little writing exercise will have to come to a close. It is bedtime, after all, and tomorrow is a school day. Vacation is over, and hugs are necessary, for all of us.

They really do want a piece of 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).

The Japanese maple in my backyard sometimes tells me all I need to know. It is not a delicate tree, as many of its variety seem to be, but an old, strong one, immensely climbable, and a fine reporter of weather conditions. Right now it is frosted with snow—quite elegantly, I might add. In fact, this tree is always a beauty with its nevergreen leaves, covered with children, or with no leaves at all. And then, there is autumn. It is my favorite time of year, anyway, so perhaps I am biased, but I doubt anyone would fail to find pure magic as the low light of fall shines through the crimson leaves floating slowly to the ground.

It was at this time this year that I found myself gazing with regret from my kitchen window to that tree in its splendor. Its mere magnificence made a palpable space in my heart from the way I wished things were and what had really happened.

The silence was everywhere, as my older son, the one who perhaps loves that tree more than all of us, was not raking up the leaf piles so that he could climb the tree and jump into them. I thought I could see him there, and then, I realized that it was not possible. No. In fact, even days earlier, he himself was not jumping in leaves, or even leaving his room. When he went to counseling and said that he could no longer find a good reason to live, we had to act. I thank God for that counselor

The psych ward is a strange place, somewhere between hospital and prison, with an arts and crafts room and a few floor lamps thrown in to make it seem less institutional. Despite a pretty good knowledge of what mental illness does to a person, to a family, I had not yet experienced this area of the hospital. So, even though it made sense that the staff would take extra care, I still felt a clinging sadness as they came to unlock the door that separated me from my child after he came in on the ambulance. That Friday night—no, Saturday morning at that point—the nurse searched the bag with his favorite things, removing items that may be dangerous. The drawstrings came out of sweatpants. The Bionicle with the pointed helmet? Nope. It went home with me. When I later met my son’s laughing classmate, who had slashed her wrists, I understood why aluminum cans were banned. It struck me how invisible her pain was to me, how invisible my son’s had been to so many, as well.

The next Monday, I took a picture of the tree, dusted with the first snow, ablaze with leaves that had not even completely changed colors a few days earlier. My son was astounded, and no, he hadn’t been outside. It had been three days, and it dawned on me that he didn’t even have a coat with him. He said he didn’t need one.

A few days later, the weather turned warmer. We thought he may come home, if only for a few hours. I went to the school to pick up homework, and the guidance counselor left something in my car: a turkey and all the trimmings, a pie. I didn’t have to shop! I didn’t realize until the day I opened the box that the meal had been completely prepared. I didn’t have to cook! A pleasure most times, but not this year. We had to enjoy the meal without him, thankful that he was in good enough spirits to kick a ball around with his sisters in the courtyard before we came home. Thankful, too, for the generosity and compassion of so many.

The tree lost most of its leaves in the wind of the next days, days that blurred in rain and fog, wind, sunshine. I remember nothing but the drive down 135, driving there, not home, wondering how he would be, and then returning to meet his sisters, finding a way to make things all right for them. We painted our nails. We drew. We accepted unexpected kindnesses, and tried to be understanding through our disappointment in those who had not known what to say. We raked, falling, laughing with tears streaming down our faces, into huge piles of the delicate leaves under the tree, awaiting his return.

I turned the page on the calendar, and the hospital said he was ready to leave. He came home just after school ended, went upstairs to his room, like any other day. He smiled. It was a gift.

I cannot say that things have been smooth, that life has gone on as normal, or that I even can tell you what normal is. In fact, things have been hard, disagreements bitter, illness still lurking, letdowns remaining, snow falling. But this is life, sometimes so easy to give into the difficulty of the whole affair, to fill it with noisy things and superficial importance, or to abandon the mess altogether. And yet, I look at my window, and the tree is still there, still strong, still beautiful, simply there. There, also, is gentle kindness, words forgotten and words not yet spoken, There is joy.

My writing has been affected by the middle school schedule. I have found it difficult not to nod off sometime after 11pm, since I have to get up shortly after the brutal hour of 6:15am. It stinks, particularly because I feel my creative urges draining from my fingertips on a daily basis. I hope to correct this soon.

In the meantime, I contribute this, a song from my girls about a large, stuffed polar bear named Beary. If you knew my six-year-old daughter, you would understand why Beary is such a funny bear. Beary is cantankerous, but has many adventures. If you knew my eight-year-old daughter, you would know that Beary has been hearing nightly recitations of Winnie-the-Pooh, with some intriguing consequences. Beary has become quite distressed at learning of Pooh’s emprisonment chez Rabbit. Also, balloons, umbrellas, and the words, “Tut, tut, it looks like rain,” have affected Beary in a profound way.

Beary Blues

I looked in the kitchen for my honey pot.
I thought I had some honey, but I guess not.
I’ve got the Beary Beary blues
I’ve got the Beary Beary blues
I’ve got the Beary blues, and I need some honey, you see.

I looked for some honey… in a tree.
I looked for some honey, but damn that bee!
I’ve got the Beary Beary blues
I’ve got the Beary Beary blues
I’ve got the Beary blues, and a stinger in my knee.

I went to find honey, and guess what I saw.
I saw my honey on another bear’s paw.
I’ve got the Beary Beary blues.
I’ve got the Beary Beary blues.
I’ve got the Beary blues, and no honey, poor ole me!

I finally found some honey in a honeycomb.
I turned around then and brought it right on home.
I’m not Beary Beary blue (anymore)
I’m not Beary Beary blue (anymore)
I’m not Beary blue now, eating blueberries with honey!

I have just been kissed.

My daughter is awake too late. If I had investigated, I probably would have found the book beneath her pillow (she knows by now it’s better to hide them). She tells me that there are monsters under her bed, and I hold her and tell her that it’s impossible because I sprayed monster repellant in key areas and at all entrances to the house while they were gone. She asks if I remembered the chimney. Yes, even the fireplace below, just in case. She asks me where the can is. I used it all. She asks me where I bought it.

“It’s time to sleep, honey,” I say. She kisses my cheek, then takes her hand and touches the place she kissed, and waves it all over me.

“Sprinkles,” she says.

“Huh?”

“If you touch the place you kiss, you can sprinkle the kisses, so you know I love you all over.”

She made this up herself, she tells me when I ask her, and I swell with that warm pride you know when your kid does something special.

After all, the sprinkles work.

All right, this is the biggest thrill of all. The kids, the three who came home, yes, they are home. For all the rest and relaxation I needed so much, I missed them. My oldest is almost twelve, so he ran in the house, looked around, and said, “Wow. You cleaned,” before he headed upstairs with a bin of Legos he could barely hold. The girls ran from room to room saying “Hello kitchen! Hello basement! Hello room!” Then they put on the Spice Girls (my almost-twelve-year-old loved “Naked” when he was about two and a half—don’t tell his first date). It was “Mama,” and they said it was for me. A dedication. How sweet! My six year old informed me after squirming around a bit that she even missed the toilet here.

So they are home, running around, not dismissing today parts of dinner that will inspire a scowl tomorrow. It’s new again. It’s all new, really, with one not here. Yes, I still miss him. Everything seems new. My oldest starts middle school Tuesday, and needs a pile of binders and folders to organize his life in exactly the way that every other kid in sixth grade will be organized. I think he grew. He wants an electric guitar. I thought I had talked him into the acoustic, but apparently I created a monster when I suggested guitar at all. The girls have slipped the Spice Girls CD into the karaoke. They already know all the words, and I know which girl grabbed the mic, and which one grabbed it back. There is a mish-mash of musical bits all over the house right now. Joe Henry down here, Linkin Park in my son’s room. I love the noise. Some noise is quiet now, but in our hearts, always here.

My friend’s washer broke, and she is coming over to throw her kids’ laundry in before we drink some coffee on the porch and watch the kids. They will be looking for the two-year-old neighbor, who has been checking daily to see if my kids are home to take a walk with her. The next-door kids should be back from Colombia tonight or tomorrow. The sky is bright pink, and the kids are running down the sidewalk, then climbing the Japanese maple in the backyard.

And it is true: my house is clean, maybe even inviting. It is really quite remarkable that I accomplished anything at all, considering that I feel refreshed after what felt like nothing but luxury.

But this, this is luxury: small hugs so big they embrace the whole world.

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