Tag Archive

Could this really be the day? Could this be the day that Massachusetts strikes through a department name that shocked me when I moved to this state? The wording in the Senate budget amendment would indicate that it is, and the joint committee that gets the budget next is not likely to change “Department of Developmental Services” back to its present name. It has been years that Massachusetts advocates have been working to change the name, and it seems that this will be the year.

The Department of Mental Retardation.

I thought that sort of name had gone the way of the institutions… Unfortunately, we still have those, too, in Massachusetts.

Mental retardation.

My son has this diagnosis along with autism. Those clinical diagnoses jump around when no one can find a clear explanation for why a person is not like everyone else. “Mental retardation” is a name I have mostly avoided using, largely because of its highly presumptive and predictive quality. “Developmental disability” seems to allow for more latitude, more possibilities. And I really prefer to refer to his abilities, rather than his disabilities, even on the most challenging days.

Beyond my own son, who does qualify for DMR’s minimal services no matter the name of the department, I wonder if a name change might not highlight the growing need for the forgotten developmental disabilities in the Commonwealth. Our own DMR houses the Division of Autism, which should serve all individuals on the autism spectrum, not just those who fit into DMR’s eligibility requirements, which are largely based on IQ, more stringently so for adults. There are a good number of people who have developmental disabilities who do not have IQs under 70. So who serves them? The Department of Mental Health sees “Asperger’s syndrome,” and hands fly up in the air: “That’s not ours! To DMR with you! Away!” Even those with multiple mental health diagnoses get pinned with an autism spectrum disorder, and DMH flies away. But right now, DMR does not provide services to individuals with Asperger’s syndrome, either.

Of course, the issue is really one of funding, and that rant is yet to come. Some who opposed the name change point to that very issue of funding, and the sympathy that the term “mental retardation” inspires. My son has been the special education mascot once or twice in his life, and I found those moments to be ones of circus-like shame. Perhaps the notion of “those poor people” inspires some guilt-ridden legislative line items, but does it inspire understanding and real systems change? Does it give people real lives, or does it perpetuate the fear? Not to say that funding is not important: I imagine that if the well had not run dry, DMH or DMR (DDS?) in this day and age would happily ensure that all people with disabilities get what they so desperately need. They would coordinate services rather than playing ping-pong to maintain a barely manageable caseload. I truly believe that every person who works for these agencies wants nothing more than to be able to provide appropriate services.

But lest I let these dreams of coordinated case management and appropriate services fly away with my point, let me get back to the very basic problem with a name like “Department of Mental Retardation.”

My son, with a diagnosis of “severe mental retardation” should, by definition, not gain cognitive abilities above those of a four year old.

How the hell does anyone know that?

And yet, with that prescription, who will ever help him to realize his potential, and not those of a clinical diagnosis?

Does a name mean anything? Oh yes. Sticks and stones have far less power.

A name means everything. And perhaps, this year in Massachusetts, a name will mean NOT keeping people in their place, but supporting their development. Maybe, just maybe, a name will mean change.

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.

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.

I used to leave my house in northern Vermont with some combination of trepidation (would my family survive without me?) and anticipation (hot damn! I’m headed to the big city!) as I headed out across the countryside toward Montreal. The first time I went, I took a bus, enjoying the tales and tribulations of the rave organizer who sat next to me. I decided the next year that it was much more satisfying to have the option to stop along the way, and pile the car full of treasures that at the time were usually no problem to drag across the border duty free. I managed to fill my farmhouse with mod furnishings from Caban, electronic music, exotic vegetables and enough elaborate pastries to extend the stay at least a few extra days in feeling, if not in fact.

It was a getaway for me, to be sure, and I craved the city with the passion of Lisa on Green Acres (sans Hungarian accent), like a smoker trying to quit. “Bloom where you’re planted,” my neighbor from the dairy farm across the street told me. Oh, I tried. I tried. And I did sometimes, managed a few nice flowers from time to time. I looked across the street at the Holsteins and her business sign, “The Beauty Hut,” and the grey hills and the sky, and I tried.

And then, an hour into the trip, I could feel my heart race—literally race—as I drove through the fields and saw the skyscrapers in the distance. I loved the way that the city just sprang up like that, somehow adding to the excitement of it all, like Oz. The traffic picked up there, adding car after car, a few crotch rockets zooming their riders off to an inevitable early grave. And I would finally reach it, le Pont Champlain, there at last, over, then off the bridge, driving fast. Yee haw! (or something a bit more sophisticated than that).

I loved racing down the hill on University, downtown, to Rene-Levesque, the thrill of being back where it was busy. It’s hard to imagine the contrast from where I lived, where the first traffic light was ten miles away.

For all the luxury of time, bookstores, hair coloring (it was red then), and room service, the trips also gave me perspective. Vermont was beautiful, glorious. I was involved in the community, advocated for my kids constantly, knew everyone. I loved that, but I also always knew that at heart, I was a flatlander. Not my fault, really—I just didn’t grow up there. And I had this kid who needed so much. Once, in a grocery store, a man saw me pushing him and his sister through the store, and thought to share his thoughts with me.

“I hope you don’t plan to have more of them,” he said. I was taken aback. The man didn’t even know that my older boy was in school then. For all the time that I had faced the realities of my son’s disabilities, I had honestly never heard anyone actually voice such an opinion to me directly.

“These kids cost everyone else a lot of money,” he informed me. I found myself dumbstruck, then hostile, thinking of the man’s own cost to society. He was older, certainly had health concerns that were undoubtedly some cost to Medicare. But in spite of that, the man did deserve those benefits. I could not think of a thing to say, so I just told him that I loved all my kids, and walked on.

I checked out, pushed my groceries out to the car, helped my little girl and my three-year-old son out of the carriage. My daughter tried to climb out herself, but my son did not. He did not try to walk. In fact, at that point, he was unable to do that, but was getting closer to that developmental milestone with the help of over two years of physical and occupational therapy. My boy smiled, and let me load him into his car seat, placid, trusting. The man from the store was standing behind me, and I stiffened.

“I’m sorry,” he said. “I don’t know why I said that. It’s really none of my business.” And he walked away.

I am sure that he felt better for apologizing to me, but I felt numb for a while, then mad at myself for not having the appropriate, politically active, stereotype-shattering response. Then, I just felt sad. I always assumed that everyone just absorbed the love that my little boy exhibited with his belly laugh and hugs. It never occurred to me that he was viewed as “too expensive.” I felt sorry for the man, probably counting every penny, and thinking about Town Meeting and property taxes. After all, he was right. My son’s education, which was still nowhere near appropriate, did carry a hefty price tag that was all too evident in the school budget.

Days after the man shared his thoughts about my right to have more children, I found out I was pregnant with my fourth child. And yes, I continued to take my disabled son out in public with the others, and let the glarers glare. Sometimes, someone smiled.

So, that brings me back to the perspective I gained from Montreal. What was I searching for? What could this Oz grant me? There, I was not the mom with a cause, except as I wished to be. I escaped, spoke French, saw plays, and thought about the life I had been called upon to lead. Sometimes it struck me, after days of seeing not one person like my son, that life felt superficial. Then, I’d come upon the man who sat, speechless, with a cup on Ste. Catherine Street, just a man and his dog. I knew he probably had autism, probably some other mental health issues, but enough skills to sit out there all day and collect his money. What more might he have been doing? Was this the life he chose, or was it all that was left for him to do?

I went because I loved the luxury, the freedom of letting go of a reality chained to limits imposed by disability. I could let go, once in a while. But why chains? why such limits? If I left feeling exhausted and questioning about why this life had been handed to me, Montreal did take me home. I returned to have it in all its fullness, with new energy and hope, a new fire blazing to make a difference.

So, now, fully recharged from the laziness of summer, I return.

The words on the page of the letter made the decision tangible. Yesterday, they were just words I uttered through tears over the phone. Little details, clothes packed away, toys in boxes, and memories playing over and over though my head, made the decision more real. I walked up the stairs to the attic. The boxes, ten years worth of letters and records from doctors and schools and therapists, made the decision more understandable, in my mind if not my heart. In exactly two weeks, our lives will be different. My boy is leaving.

Oh, of course we’ll see him again often enough. He’ll come home some weekends, and I’ll visit him at school. But, he will no longer live with us here in our house in Framingham.

It would not help to defend myself as a mother at this point. Either you understand the wrenching choice, or you don’t. It is not a decision I made easily, or quickly. Indeed, the proposal had been made three years ago, by a behavioral specialist who worked in our home. It has taken a few injuries for me to consider it. Strangers bitten, therapists leaving the job after hurting their backs… The days I spent unable to walk after trying to lift him were over a year ago, yet I look for some sort of way to explain how hard it has been. Sleepless nights? The scratches on my arm? His room is a wreck, drywall falling where he has banged his head, windows broken, contents of drawers and closets scattered in nighttime frolics. His frolics, not mine or anyone else’s. And the price paid by his brother and sisters? Sure, they love him, but they have given so much, learned so much so early. How about my ten-year-old son? It is for him that I know I have to do this. I can damn the world we live in, but at least for now, it feels like the only chance he has to move forward and really learn the daily living skills that will make his life better as an adult. His life could be better. That, at least, gives me some consolation.

But then there are the joys I will miss. My boy laughs from deep in his belly. When he is truly happy and seems to know I understood him, he beams, and holds me tight for a hug that feels like forever. Amidst social service budget cuts and reason for pessimism, this kid inspires generosity, patience, and tolerance. They have been lessons for all of us. The world slows down, and the essential things become clearer, the judgments less harsh, the pleasures more sublime.

I was inspired in my own work and life by my son and the people who have helped him, and by the people who have helped me. It is a world that was so foreign to me when I was younger. I was afraid of it. In working on policy around disability, I see the range of people who are perceived as limited by what their bodies let them have. And yet, what remains is the spirit. It sometimes astounds me. It all seems normal to me now, more normal, in fact, than the perfect health we hope to attain or maintain. Is this not the human condition? I think of accessibility, acceptance, and love, and I leave you tonight with this:

The Poems of Our Climate
by Wallace Stevens

I
Clear water in a brilliant bowl,
Pink and white carnations. The light
In the room more like a snowy air,
Reflecting snow. A newly-fallen snow
At the end of winter when afternoons return.
Pink and white carnations–one desires
So much more than that. The day itself
Is simplified: a bowl of white,
Cold, a cold porcelain, low and round,
With nothing more than the carnations there.

II
Say even that this complete simplicity
Stripped one of all one’s torments, concealed
The evilly compounded, vital I
And made it fresh in a world of white,
A world of clear water, brilliant-edged,
Still one would want more, one would need more,
More than a world of white and snowy scents.

III
There would still remain the never-resting mind,
So that one would want to escape, come back
To what had been so long composed.
The imperfect is our paradise.
Note that, in this bitterness, delight,
Since the imperfect is so hot in us,
Lies in flawed words and stubborn sounds.