Category Archive

Now is the time for all good men (and women) to come to the aid of …. one another.

I can type pretty fast, but I never really stopped back in high school typing class to think of what some words really mean, much though they may have been tapped into my brain. Back in those days, civics lessons were an enormous bore. History was only abstract dates and places, even with animated discussions from fine teachers.

The problem, I think, was the abstraction from the causes we were discussing, and also the idea that engaging my government could be bad manners. If I were to learn it all again, though, I would hope it could be more real… I would want to meet the actual people who challenge their government to try to make things better in the world and let them tell me why they do it.

I watched a lot of people doing just that yesterday, at a Statehouse rally for a little piece of legislation that could make a big difference for people who make a difference every day.

Senate Bill 65 is a bill that would change the way that agencies that provide human services can get paid.

For an outsider to this whole complicated world of human services, this whole issue seems so abstract. It seems so easy to imagine mismanaged agencies, high-paid executives bleeding their workers, or irresponsibility of the state government that made the contracts. Taxes are high enough. Social service costs are out of control. Government is out of control.

Well, some of that is undoubtedly true. Like many of the people who have responded with letters and comments to other articles on the issue, I am none too happy about paying for the Big Dig, either. I wonder about the efficiency of government. I am exasperated by the services offered that often do not match the needs of my own kids when it comes to human services. And yet, in this imperfect system, I still see a dream. I still see what our government should do for us, particularly for those of us who need help the most.

Now, if you are one of the employees earning around $10 an hour to provide direct care to a person who needs the help, the abstraction around the issue completely disappears, as you struggle to make it while doing one of the toughest jobs you could ever love. If you are trying to manage one of the human service agencies, budget reviews must bring you to tears. How do you do it? And how does it hurt to cut first the desired things, then the needed things, then still not know how to juggle it all, trying to figure out how to pay for rising fuel costs, rising health insurance costs, the costs of absolutely everything. Most of us have gotten a raise since 1987.

Two years ago, we saw similar alarm from direct-care workers with the Personal Care Attendant Workforce bill. This legislation was different: aimed at a state program where people with disabilities directly hire the people who work with them—at a rate determined by MassHealth (Medicaid). Personal care attendants struggle still with the $10.84 rate that has never changed as long as my son was in the program. The bill did pass. Our legislature (if not our last governor) did recognize that people who care for people need to earn a decent wage, have benefits, such as health insurance. They recognized that the people who hire personal care attendants need to have a better way to find them, and to train them. These facts were recognized, but the Personal Care Workforce Act remains an unfunded mandate. (That is next week’s rally.) A labor union is still pushing, and workers elected to join that union. A workforce committee meets on a regular basis, though I no longer go to their meetings. But damn it, it is still hard to find personal care attendants! I know. I have tried.

Senate Bill 65 should pass, too. It is only fair for agencies to be allowed to negotiate fair contracts based on cost of living, and not a pre-set rate from the days when we were humming along to “Walk Like an Egyptian.” The Simpsons was not even a regular series back then! The Berlin Wall was still standing, and gas was under a buck a gallon… but I digress. We need support from legislators, and recognition of the dire straits that the human service industry is in.

Still, saying that agencies need more funding to survive is so obvious, but somehow, finding that money is not obvious at all.

I have lived it firsthand, experienced the effects of shortages in services available to people with disabilities. My own family has been waitlisted, had services removed, watched as no services were available, let alone appropriate services. I have lost a child in the process, as I gave up custody in the wake of insufficient services in my home—a loving home that worked all right when we had the help we needed.

I look at the future for my kids, and for others around me. I look at people who are getting older, at families devastated by trauma of various sorts, at nonverbal adults, at teens with mental health issues who are bounced around various systems without the help they really need. How much does all that end up costing society?

What kind of people are we just to turn away from these issues? So many people do want to help and do care. So few people can do it for very long. So many agencies drop services, or are forced to draw the line with the numbers of people who can receive services.

Senate Bill 65 can keep agencies from collapsing. We absolutely have to keep the human service industry from falling.

But then what? It is up to us all to fight, to pay more, to have bad manners perhaps, to demand better services, services for more people. We have a moral responsibility to value the more vulnerable among us… to help them be strong, to help our society to be stronger, if only with a little help.

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.

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.

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.

Today, on this beautiful summer day, I am on day two of my time without children. It is time to paint. No, not artwork right now. I really don’t know exactly what I am doing, I admit. This is my first attempt at exterior house painting, and I am reluctant to get too high on the ladder. Still, the chipping paint has been irking me for some time, and I can do something about it right now, before winter comes to battle the woodwork again. Yesterday’s downpour was a bit unfortunate, but I have time and desire to make something better.

At some point in my life—actually, one night in Vermont, when I was sick of peeling wallpaper—I decided to do some simple home repairs. The wallpaper was easy enough to fix: I found the pieces that had been left on the floor, and glued them back. Voila. It dawned on me at the time that the house could be much nicer without that wallpaper, historic though it may have been, but we were about to move, and I let things be. It was in the next house that I made my changes.

The next house was nice, but not my dream, a dark house whose front did not face the street, but a path along the side of the house. No one came to the front door. It hardly mattered, though, because the house was set back from the street a long way—I could not see the street from my driveway without walking about halfway down. I realize that for some people this is a dream, but not for me. We were in a suburban neighborhood, but so secluded that we barely saw it. For someone who enjoys sidewalks and city bustle, it was hard. Harder still was the austere feeling of the house itself. Maybe for real estate purposes, maybe for personal preference, the previous owners had painted many walls a stark white, where the dull browns and overbearing toile wallpaper were not left up. It was a dark, sad house, which may explain why the previous owner was going through a divorce and making wine in his basement.

I did have to admit, though, there were some nice things: a sun porch with a cathedral ceiling, a wall of rhododendrons that were blooming magenta flowers when I saw the house, and the mix of seclusion and convenience that I knew would be a necessity if I really wanted to move that summer.

I had to spend a lot of time in the house. Before we moved, I had sought out the special education services my son would need. The town had set up full-time home therapy for my son, to start the week after we moved. It was incredible, but it also meant that I had to stay home for most of the day while the services were going on. I was new to town. I couldn’t leave the house to seek out the other kids in the neighborhood, and my own were too young to go wandering alone. So I decided to make things better. The first thing I did was to start working out. The other was to change the house.

I moved furniture around, but the house was still dark. On one of my first weekends that my then-husband was away, I realized that paint could make things better. I loaded up the kids, and headed to the hardware store with a plan. It was Friday night. By Sunday morning, the bathroom was jalapeno green and beautiful, if I do say so myself. To this day, my older son asks me if I will paint the bathroom here the same color.

I did not stop there, continuing over the North Carolina motorcycle week to paint the kitchen sunshine yellow and an orange whose name escapes me. There were bricks exposed in most of the kitchen, and I painted yellow above them. In the part without bricks, the orange went below the chair railing. I had a sunny kitchen. I hung a painting. I found a print in Montreal—a fairly common one, with a clown inside an orange peel, selling Campari. Color. It made all the difference to me. I patted myself on the back when several months later I saw a similar color combination in Architectural Digest. Trendsetter, I was… (well, actually probably not, because those articles must be shot long before the magazine comes out). But I loved it.

Many came and went from the house with their own opinions, but it was clear that the house was becoming mine. I ripped down the impractical shelves in the laundry area and put up ones I liked better. That was the next home improvement. Nothing was stopping me anymore. I repaired a stair. I patched a crack in the concrete. I stained a deck. I learned how to take the hinges off the door from the garage to break into my old house. I mended the drywall that my son kept destroying in his room. I repainted. I put up padding on his walls. I installed a light. Fall came, and my son started going to a half day of school.

In the midst of all of this, something strange was happening to me. I was playing my music a little louder, and started helping with an ESL group in the school. I started to meet people, learn my way around. It was so different from Vermont. There were other parents to talk to about our kids with autism. I could run to the grocery store for rice milk after dark, and I had figured out the short way to get there.

Other things seemed so much clearer, too. I realized that some things, things I had always taken as my burden, were in fact simply problems that needed to be addressed. My younger son had a good program at last. Things there were going well then. The challenges at home persisted, though. It was a long journey, looking for the right thing for my oldest, always thinking a gifted program or a sibling club for children with special needs would make all the difference for him. We met with therapists in Vermont around those issues. My older son drew a lot of pictures of his anger. Well, someone visiting our home did mention that she thought he might need more help than that. The girls were bright, but they never attacked the way their oldest brother did. He was a whiz at so many things, but so quick to anger, so insatiable when he was angry. A lot of changes came from the move. Maybe he was reacting to those. I talked to his teacher ahead of time about the fears. A fire alarm could set him off for days of tears and refusal to go to school. A dog bark could send him inside for the rest of the day. It did seem like a lot of things set him off. What was happening?

As it had for some time, a tornado raged inside my house. In the middle of one, I called a therapist who was recommended on a listserv about special needs. He was supposed to be the one to calm the storm for kids who make them. We made plans, tried to stick to them. It never seemed to be enough. The daily battles continued, then the tears, the late night talkativeness and the amazing Lego creations after midnight. He seemed an unusual child, intense. He was the challenge, the joy, the indigo child, the explosive child. There was a section in my library devoted to how to parent him, nearly as big as the one for his brother. It was hard to see, until my son with autism was receiving a visit one day from the program consultant. She pulled me aside and told me that she considered it a crisis. Wow. She was worried. She asked me if she could call the therapist. She did.

So, the next week, when my younger son was visiting our new pediatrician, we chatted. “How are the other kids?” Oh, fine, well, mostly. Actually, it was kind of scary. I said so. Daily threats. Rooms torn apart. A kid who loved to talk and take things apart, and could make detailed plans for intricate machines. Something set off bells in the fine doctor’s head. Yes, I went back to talk to him. In the weeks to come, everything inside the colorful walls began to change. I started writing again—something I had hardly done in years. As I did, it all began to make sense, and I kept writing trying to make it all right. It was. It was all right. Whatever it was, it was going to be better, and it is. It is better. Different, but better