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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

The men in suits were out again today. I see them often in my neighborhood, as I pass several funeral homes any way I turn to head out into the world from where I live. This morning was a sunny, cool morning, and the men today were attired in a professional black: older men who own proper suits for such occasions, men who are accustomed to facing the end of life.

A morbid curiosity leads me into the lives that will be remembered on mornings when the hearse is parked out front. I cannot help but wonder what happened, and why. The cars and the people who gather lead me to assumptions, some ordinary, some tragic. Some days I can barely make it through the streets as cars hunt for parking, fire engines or police cars line the streets, people walk sadly to that one place. Tragic. Sometimes, there are few cars, a few people out front, some laughing, some smoking, some simply quiet. Ordinary.

Morning suits are for funerals. The evening suits are of a different sort. Visitation brings the stragglers, the people who appear because they know they should, the ones who would have, should have made it to the hospital earlier, the young people dressed in the best they can muster, reluctantly inching closer to the door to pay respects that they barely know how to pay. But they do.

I remember one funeral, years ago, sitting in the front in a mint green dress with a boyfriend nearly as young as I was. I smiled as seemed necessary, waited, made the uncomfortable friends feel that they had done the thing I most needed them to do—and they had—which was just to be there, however they could manage. I thought on that day how short a life can be, how precious the few moments we have in this world are, and how fragile our abilities remain with us. It was nearly twenty-three years ago now, a death on Flag Day, a visitation on Father’s Day, a funeral on a quiet day when the world began again in a new way for me, with a strange sort of beauty that comes only when you know that someone you love has at last been given the peace that life never offered.

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.

In her blog, “Trailer Park Refugee,” Daisyfae recently offered an enlightening account of matrimonial festivities (http://daisyfae.wordpress.com/2008/03/31/eyewitness-report-redneck-wedding-reception/). All the discussion about firearms (should they stay or should they go?), do-it-yourself decoration and cleanup, and dancing ‘til the cows came home made me somewhat nostalgic for bring-your-own get-togethers. The cause for reminiscence is beyond me. Have I blocked memories of celebrations past? Whatever the reasons, I found myself last night listening to Johnny Paycheck while googling the town where my dad grew up. It was out in the country, and the thank you notes I sent for birthday cards and the like only went to roads named Route #1, so finding anything was sort of a challenge.

Now, lest you think me a snob—all right, go ahead and think that—I have to explain a few things. Trips to the country, though dreaded, did have their fun parts. I enjoyed Dixie, the sweet horse who was saddled and ready for a gentle ride whenever we were there. My cousins were nice, and it was a lot of fun to play in the barn when we all were still little. I liked getting to fire off my dad’s Derringer, and walking around the fields and playing with the kittens that always seemed to be around.

But it was not all rosy. The meals were unfamiliar, doughy, greasy, strangely pickled. The adults were loud. I was the fat kid with weird clothes, flat hair, the one who talked too quietly and used the wrong words and looked down when you talked to her. That may have been because of the oinking noises some people made when I actually ate something, or it may have been because nicer people said I had such a pretty smile, if only I’d lose a few pounds. I may have been intimidated by the drinking, or the beehive hairdos. I may have zoned out because of the gossip about people I barely knew, or the rustic beds, or the fact that even though Jefferson City was a mere twenty miles away, we never went there or anywhere else.

Come to find out years later, I was doomed from the start, because I was my mother’s daughter, and my mother had a college education. It was more than that, I know, knowing my mom. My dad stayed in the city, and she got the blame. To save herself from humiliation or any potential conflict in defending her preferences, she also kept her interest in British mysteries and crossword puzzles hidden beneath the surface, martyred as she was in making these trips regularly. I don’t know how she got herself into that mess, why she kept doing it… perhaps some future windfall of payback was anticipated for some indulgence my dad might otherwise not have agreed to. But maybe not. After all, does anyone actually mean to end up in the mire of cognitive dissonance? How do any of us find ourselves–our oh-so-sophisticated selves–pondering aloud while pumping at the Texaco that we were at that first race at Loudon the day before Davey Allison’s helicopter crashed?

So, in remembrance of my dad’s family, I kept googling, trying to bring back some tangible evidence of the days I remember in the country. There were hints of familiar names, traces of towns, but alas, no mention of the farms or the one building I recall in connection to celebrations in the country: the Trail Riders Association. This building, a large meeting palace, sat off a gravel road—I believe—as nearly everything did there, in a field—I think—as nearly everything did, and had outdoor “facilities,” maybe even with a moon painted on the door. I do remember the grasshoppers jumping into my underwear, and the chigger bites that I got to take home. But the town itself seems to have grown since I went there. The last time I tried to find anything nearby, it was not the same place. There now is a technical college, a golf course, a drug rehab clinic, probably a big grocery store, probably satellite television… but no mention of the Trail Riders Association.

I hardly remember when or why we stopped going so often to the country. It may have been that my aunt told my dad that despite his memories of growing up, it was a bit much when we arrived so many Saturdays at 6am. It may have been that my mom, a perennial night owl, finally refused to give up sleeping in on the one morning that she could. Other things undoubtedly came up as we got older, other things to do.

At one point, for example, we filled a good bit of time when we bought property out in a semi-developed area of St. Louis County, where we had intended to build a house. I think my mom must have tried to delay rather than confront the abomination of actual relocation to a place that featured a scenic drive past Bigfoot the monster truck, to get to it. Why would she want us to move out there when she liked the genteel suburb we lived in? It could be argued that the property had more acreage, and was sort of a consolation for my dad after it became apparent that we were not moving to Wyoming. I can think of no other reason that we would have bought it. We did have a garden, and spent many hours clearing brush and cutting grass, eating Vienna sausages in the shed, building and riding go-karts across the field, and visiting our would-be neighbors and their six kids and grandbaby.

Now, these neighbors were an interesting brood. The youngest child and the grandbaby were the same age, and when we first met them, mother and daughter were pregnant together. Their basement floor was much messier than ours, covered as it was with the dirty clothes of nine to ten people, depending on whether the older daughter had a boyfriend living with them at the time or not. I hate to admit now that the noise level and basement floor of my own house sometimes remind me of all that, but as of yet, my daughters are too young for babies and live-in boyfriends, and by the time they are, about twenty years from now, my fertility clock will surely have stopped.

I don’t think it had anything to do with the neighbors, but something happened to stop us from going to the property, too, and eventually we sold it. I was thankful, and found some added level of safety buried beneath a French book, maybe because it was the farthest thing away from my life that I could imagine at the time. I dreamed, dreamed of how I would leave the Midwest and head east. Head East, raise a little hell, and stay here… so I did.

Amazing how some memories make mush of my brain. Or maybe the mush is direct evidence of the ambivalence I feel about my childhood, when I remember pieces of it that don’t seem to fit the story I tell myself. When I was twenty, my dad died, and that part of my life fell off into space, floating far away, an appendage of experiences that hurt to remember, that I wanted to forget.

Is it any wonder that I was confused, with one parent musing answers to the Texaco quiz (there is that brand name again) during the intermission of grand old opera, while the other blared Grand Ole Opry in another room? Music grew louder as the words themselves could not be spoken. Minnie Pearl, her price tag hanging down, juxtaposed against the image of Luciano Pavarotti: arguments that should have played out, discordance that lingered in the background of a puzzle whose pieces—if I found them—could never fit together, could never show a full picture, could never be complete.

But who is to say what sorts of pictures we carry with us? Do we search for missing pieces, or do our hearts with time melt the edges, let new images fill the spaces? I think this is must be how we grow up, how our lives come to make sense with all the crazy, disjointed pieces they may contain. We grow, and love, and in time, even the pain, the tragedies, become a part of a textured illustration richer than any perfect set of pieces that might have first fit together could ever be. That is life; that is our gift.