Thursday was Eli's end of school graduation - and I thought in honor I'd re-run a post I wrote at ye olde blogge back in 2009. One of the hardest parts of addressing our changing world is dealing with shifting expectations and assumptions, and not getting mired down in sadness or anger. I think one of the things that has helped me is that we've had to do this in other ways before. This year is Eli's last one at the nurturing school for kids with autism that he's attended since kindergarten, and I found myself thinking about this a lot this week.
There are, of course, plenty of moments in any life in which one despairs of the hope that really substantial change could be made in our society. You look around and doing what needs doing seems hopeless. But then, there are the other moments.
On Friday, we attended Eli's annual end of school year ceremonies. Unlike most kids, Eli attends school year round, along with all of the other 60 or so children who are part of his school for kids with autism. The yearly graduation and celebration of their achievements is held in August, as the summer winds up.
In many ways, this is no different than open parent day at any school. In other ways, it is. Some of the kids have elaborate academic achievements to show off, some have none at all. In either case, many of the most important things come in tiny increments - this year, someone's son learned to say "Hello" without prompting. This year, someone's daughter had only half the tantrums of the year before, and no longer cries when someone makes a loud noise. Someone's 7 year old finally toilet trained. A 10 year old learned to converse about something other than trains. These are the accomplishments that matter most - the ones that get our kids a little closer to being able to live in the world with everyone else. While Eli did very well academically this year, the big things for us were these - he can put on his own socks. He can now choose between 3 or 4 items, without having to echo the last one - he can pick the one he wants. He can color. He can answer abstract yes or no questions. For a child with little language and poor self-care skills, these are the essentials, not that he's able to identify the countries of Europe on a map.
My guess is that if you don't have a disabled kid in your life, this sound tremendously sad and limited and unfortunate, and the idea of being in a room full of autistic children not very appealing. And in some measure, that's probably a normal response to those who have never had close experience with children with disabilities - it is a little scary for those it is alien to, and the idea of being thrilled that your kid can put on his socks seems strange, probably as though we're secretly grieving for the child that never was, but putting a brave face on it.
And this may well be true for some people. I once read a book about a boy with autism that began with something along the lines of "X's birthday is the saddest day of the year..." and went to detail why this was so, because on their son's birthday the author and her husband spent the day mourning the child that might have been. I admit, I can't tell you much more about this book, because the whole beginning so disgusted me that I didn't read it.
And I don't think that's a normative response. That is, it may seem, if you don't have a child with a disability in your life as though you would spend your whole life reorienting your compass, grieving what isn't and faking your way through pride and happiness at the accomplishments - after all, if you hold these kids up to "normal" children, they seem so strange - how could anyone reorient their priorities to be truly happy about their kids being their kids, and truly proud of their accomplishments, not because they are all the kids can do and you need some pride, but because they deserve your pride and appreciation?
I can't tell you how it happens, but for most people, it does. The idea of spending my time mourning that Eli is Eli, and not something else seems bizarre to me. I have a beautiful, funny, sweet and healthy kid, who I adore. He does what he does, and what he can, and his accomplishments are no less natural to appreciate than the accomplishments of Simon. Simon is bright and funny, but not at all athletically talented, but the idea that I would watch him playing sports and sit there thinking that I wish he was better at it is just as alien as my watching Eli do his things, and wishing he was otherwise. That's just not how I, and I think most people, experience our children. Moreover, it is, I think, mostly impossible to live in this world, where people lose far more important things than assumptions about what a child should be able to do, without being grateful for the child you have.
Those 60 children were surrounded by hundreds of parents, grandparents and siblings, aunts, uncles and cousins who arrived to celebrate the accomplishments of the kids they love. As we arrived at the school, the heavens opened up, and as we cheered each class and each child, thunder rolled and tried to overpower us, and failed. And what is remarkable about this is that watching the people around me, some of whom I know, and some of whom I do not, I saw no ambivalence - perhaps there was some, perhaps someone was putting on a brave face. But in aggregate, it is impossible to imagine that most of those cheers and that applause that drowned out the storm came with internal hesitance - you simply cannot make that much joy and that much noise and show that much pride and love constrained by a sense of loss.
And that's what I think makes me hopeful. The students in that school come from every walk of life and every community. Their parents and families are well off and educated, and poor and not. The parents are typical consumers and recent immigrants and weirdos like us. The parents and families are black and white, asian and hispanic, from everywhere. Autism is a reality all over the world, and in many communities - there's no picking and choosing here. And I have no doubt that every parent, every grandparent and aunt and uncle, every cousin and brother and sister have at some moment thought "why is she this way?" or "why did it have to be autism?"
And yet, each of them (or most, at least) has also passed through that moment - accepted the things they don't get to choose, that children come as children come, and reoriented themselves to find the blessings and delight, the hope for the future and the promise in those children. They may have asked "why us?" But then they moved on, accepting that this is their life, the way it is, and that joy comes, not despite the things we do not choose, but as part of them - new joys, new things we never expected. The grandparents are just as excited when Nita sleeps over, the parents just as happy when their child learns to read, and we change our expectations, adapt our hopes, and they are just as fulfilling as the hopes we had before.
I don't think I have to paint a picture of the analogy between having a disabled child and knowing that your way of life is about to shift radically. Most of these parents did not choose their fate, just as we did not fully choose ours. Most of them expected something else, dreamed of a future that was different. But instead of writing memoirs wallowing in the grief of disappointment, each grandparent, each parent, each brother, aunt, sister, uncle was able to say "We have Lily, and we're happy for and because of her." There is a time and place for disappointment, and a time and place for moving on, and all of them, or nearly all of them were able to do so. This bodes well for us.
Asked, most of these parents probably would have said they could not handle a child with autism. I suspect I would have as well. And yet, when a child with autism came their way, they were not only able to "handle" it, but to make a life of joy and beauty, and moments of pure happiness and celebration out of that reality. It can happen to all of us - and almost all of us manage, not just to survive, but to find new ways to be happy and grateful and feel that they got lucky. Looking at that cross-section of people in the room, it seemed very clear that what they can do, a much larger cross-section of people can also do. Perhaps not all, but more than many of us credit can move past the loss of something we'd expected, and into the ordinary work of finding joy in your life as it is.
At the end of the celebration, they bring up the children who are graduating. Some will go on to mainstreaming, some have aged out of the program, or are moving or attending different programs. This year, one of my son's classmates, "David", who is very much attached to Eli (and Eli to him) aged out. It was a difficult thing - his parents struggled to find an appropriate placement, and David was very scared at the thought of leaving the school he'd attended for five years - transitions are difficult for these kids, and graduation day was a tough one.
David cried through the first part of the program - you could watch the tears rolling down his cheeks and see what a difficult day this was for him. For a kid with autism, this could easily result in a tantrum, or simple panic - hundreds of people staring at you and making a lot of noise is a lot of stimulation at the best of times, and this was hardly that. His teacher had confided she didn't know if he'd make it when the time came for him to come up and face the crowd as a graduate - that in practice, he had refused to go up, and been panicked by the very thought, even just facing his classmates and teachers, at bringing school to an end so publically.
As the oldest child, and the last one called, we waited, in that hot, noisy, crowded room, with thunder rolling overhead as they called David's name. People applauded, and more noise was added. The aide assigned to him, already crying at the thought of David's leaving, led him down the aisle to the stage. He was holding her hand and looking scared as he walked, but he climbed up. He landed on the center stage, facing away from the crowd, with his back to us. He stood that way for a moment, and the school's director moved to guide him, to remind him that he was supposed to face us all. But David didn't need it. He took his certificate of graduation from her, and all by himself, he turned around, and smiled radiantly at all of us. We cheered and applauded, yelled and called his name out loud. And David took in all the noise, all the people filled with pride and joy, who cheered as you cheer someone who has won the marathon, who has passed his limits and gone on and done more than you thought they could, who has made you dream new dreams and hope for new things. And David joined in all our joy for him, and took a bow.
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At the risk of sounding self-pitying, I'd caution that grief--even long-term grief--is a perfectly normal and at times unavoidable response to certain kinds of disabilities. As the former adoptive parent of a child who, as it turns out, has a combination of FASD, Reactive Attachment Disorder, ADHD, and pretty much anything else that can scramble the pre-frontal cortex; one who is violent to the point of homicidal and has been since the age of 5; one who fits all the criterea Bob Hare has established for psychopathy; one who is dissociative in her rages; one who is--or seems--because of the brain injuries she suffers, incapable of joy, and lives in a continual state of hypervigilance and fear (this is a big part of an attachment disorder) . . . it is impossible for me not to grieve.
I don't grieve for the child she might have been; I grieve for her lot in this life. If it has been difficult for me (and it has), how much more difficult is it for her?
I remain in her life because I am the only one who has done so for as long as she can remember--others come and go, as she uses up their goodwill and their ability (and strength) to cope with her rages and violence.
And I am grateful for what she has taught me: that love is a verb: something that requires performance regardless of any kind of feeling (or lack thereof).
But I grieve: both for her, and for the culture that creates the conditions that allow for (indeed, perhaps insist on) the kind of poverty and pain that leads to the self-medication that results in the brain damage she suffered in utero.
. . "not at all athletically talented, but the idea that I would watch him playing sports and sit there thinking that I wish he was better at it" . .
I think all too many parents of kids with identified challenges and those without, do this. I look at beauty pageants, and what has become of high school and junior high sports, and see just exactly that kind of expectation-fueled abuse. No, I am not just thinking of JonBenÃ©t Ramse, but all the pageant and media kids dressed to the gills doing artificial things besides learning the world through a child's eyes.
Parents demanding their child grow up to be a doctor, or lawyer, or engineer, or truck driver, or make a stellar salary, in despite of what drives and interests their ward, is an almost institutionalized form of relationship abuse.
Schools that test a student, and forbid the "high" scorers from vocational programs, or classes that aren't "college track" because the school is measured by numbers of college-bound students and test scores, and not fulfilled lives, take part as well.
Perhaps Eli, in having you for parents as well as autism that binds everyone's expectations to the immediate "what does Eli want and need, and what can Eli do?" seems, to me, to be an eminently healthy way to respect and nurture one in our care.
Blessed be, to you and yours.
Congratulations Eli! and "David"!!! this story gave me goosebumps and several tears... Bravo "David" for the wonderful, joyful, BOW. So unexpected and so wonderful. Can't wait to hear what's next for Eli. He's a lucky boy to be one of the four awesome brothers and to have such incredible parents. I wish him, and all of you, all of the best - forever.