Moving On
Sharon August 24th, 2009
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.
Sharon
- Uncategorized , joy
- Comments(23)
>He does what he does
Yes. We made that peace with Last Son’s autism twenty years ago. Now twenty-six, he is a great guy to hang out with, and a real plus in our universe.
Next month, we’re designing a trust fund (such as we can manage) for him into our will. Best we can do … some things, he can do for himself — he’s independent for weeks at a time — the rest will be up to his siblings.
Thank you.
I suspect that having a child with autism means that you get to see the world through a much, much different perspective than most folks get to. How many other adults can understand that people *cheering for you* can be a difficult thing? That noise, no matter how joyful, can be over-stimulating? And that very small things, like putting on your own socks, really aren’t that small at all, for some people, and maybe for yourself at some point in your future. (And about a million other things that many people don’t slow down enough to think about and appreciate.)
Congratulations to Eli and all the kids in his school. It sounds like they’ve had a big year.
Thank you for sharing.
Oh, Sharon….
Eli is one of my beautiful much-loved grandsons, and assigning this piece to the category “joy” is exactly right. He is pure love, plain and simple, and I can’t imagine him being anyone but himself.
{{{Sharon}}}
As the parent of a child with ADHD who is also half deaf, I understand! Kids who are differently-abled bring many experiences into our lives. I know I have grown personally by being my son’s advocate that the parents of “easy” children don’t have generally.
madison
Well said!
As the parent of an ‘older’ autistic person, I find it interesting that his statement to his brother on his last (42nd) birthday was “I like me just the way I am. I’m glad you didn’t try to make me like everybody else.”
He was born and young at a time when special schooling/programs were not available, so is entirely ”home-raised”, and I was at first anxious about going in the wrong direction with him, but we made it fine and a whole neighborhood got educated about ‘different’ kids. He’s still on the weird side but able to be entirely independent, holding a good job in the everyday world. He’s unbelievably perfectionist, detail-oriented to an impossible degree, and still sometimes makes out-loud observances that most of us would keep to ourselves, sometimes still gets stuck talking in “loops” like a recording, can tell anyone more than they ever wanted to know about anadromous fish, and recite every word of Shakespeare’s, but he is known and loved by many people, has had a driving license for over 20 years with nary a ticket, and accomplished many other feats that once I could only think about long enough to get them onto the back burner. And he seems fully happy.
I’d say he’s about the best thing that ever happened in this family.
I have tears in my eyes after reading your story. We too have a child with autism, he will be in the 5th grade this school year. It’s always nice to realize that you’re not alone in this world of raising a child with a disability. Just this past weekend, my son and I had our first candid (very short) conversation about him being autistic. I’ve been very worried how it would effect him, but it went o.k. We have never hidden his disability from him, but never openly said “Hey, you’re different”. We figure all that would come with time and maturity, and it did. We have received a lot of support from his school and community groups, but hearing from another parent such as yourself is very comforting. Thank you for sharing.
Marsha
Mother to a amazing autistic child!
I am a student of Abraham/Hicks…although I do not have experience with authistic children… I can totally appreciate what Abraham has to say about them…They are much closer to “source” than the rest of us and we would do well to pay attention to what they have to teach us about how to live…
I have a 12 year old son who is “different”, “wierd”, whatever you want to call it, and I love him so much for just who he is! I totally understand what you’re saying, Sharon.
We have our first appointment with a neuro-psychologist in two weeks. It’s taken me since he was two to get to where I think it’s time to have him tested and diagnosed. A big, big reason I’ve not done this before, and even canceled appointments, is because to me my son is normal and wonderful and there is nothing “wrong” at all with him! But alas, since he was two or younger we’ve known he had some autistic/Aspergers traits and socializing in the real world is just hard for him still. I suspect he will be diagnosed with mild, high-functioning Aspergers but I’m waiting to hear what the professionals have to say. It’s time for me and the rest of the people who know my Eli to stop doing our own diagnosing and start finding what really can help him.
Help him, not change him, to clarify…
Ah, thanks Sharon. My (much younger) brother has multiple impairments, including autism. He is hilariously funny & affectionate, but requires constant care & attention. The pride I felt when I received the first ever handwritten card from him (written at age 22 or 23) is beyond words for me, but I think you expressed it here. No-one ever stops learning, and no one should ever give up on any of us, whether or not we fit into ‘norms’
Sharon,
What strikes me in your message, is how successful your school is. To get 60 families agreeing on what value means to them, to bring 60 families together to share related joys for each other, is an immense accomplishment.
It is a wonder to me that your students had families that are proud of them – but it is no wonder at all that the students might be proud of themselves, too, with such families and such a school in their lives.
Blessed be.
Needless to say this is magnificently inspiring, on obvious and subtle levels. It’s also brilliantly presented. Take your own private bow for this post, Sharon. It’s a gift.
I spend a lot of my time with adults who have (among other things) autism. Sometimes I think it is everyone else in this world who is ‘wierd’ or ‘different’, and that the guys I work with are the ones who really have it all figured out.
Congrats to your son, and thank you for sharing this post……
I too have an autistic child. This summer he played ball. I wrote about our experiences with that here. http://mormonwoman.blogspot.com/2009/06/his-work-and-glory.html
Thank you so much for sharing your story with us Sharon. And other posters too. These special people can teach us so much about humanity and humility. If only the rest of us could live as they do, in the present and fully. I loved the different levels that your post covered and agree that there is always hope and something to work towards, no matter how small it may seem when we start.
Congratulations to Eli, “David” and all their classmates. Your school sounds amazing and the children obviously benefit from such a positive environment.
Thanks so much for this post, Sharon. Like you, I have a son with autism, and like you, I homeschool my other two kids. And funnily enough, my son also goes to an incredibly amazing special school that has done wonders with and for him over the last four years. We believe in him, love on him, celebrate his achievements, laugh with him, and cry with him, and they do too.
Our almost 13 year old son is mildly autistic, gifted and dyslexic. It was hard to relate to him at first because he wouldn’t be related to. His younger brother was a big help here and now he is so normal to outside eyes that few realize there is a problem. We were lucky but even if he were completely handicapped, he is still ours.
He went to the local Steiner School which was the best thing on offer round here and it was marvelous. He is now mainstreamed and perfectly happy about it (mostly). Yes, he is odd but I have hopes that he will fit in just fine.
viv in nz
I spent Sunday teaching my 19yo daughter how to get to her new school campus in the city we live near. She’s got learning disabilities and while she can read quite well, she cant read fast. And she cant read a map. In fact, she has to think about which way is left and which is right. This means street signs are no help and even hand drawn maps are no help. She knows that the sun comes up in the east but couldnt tell you where east is on a map or in any other setting than home, where she watches the sun rise in the morning. So we practiced getting there, getting home, getting lost and finding out how to get back on track, getting lost another way and getting back on track….My husband went out and bought a GPS and programed it for her. She will leave two hours early to make sure she is there on time if she gets lost. And I have no doubt that she will make it, eventually.
What learning disabilities has given my daughter is a total lack of fear in the face of a challenge, the willingness to fail in order to learn and a deep faith in herself that if she works at something, she will, eventually, get it. In my world, she’s the gifted one.
I completely get your pride in your son’s accomplishments.
Thank you so much for this wonderful post.
Please, Sharon, don’t give up your marvelous, kind, helpful, wide-ranging comments, articles, books, etc., to fly from coast to coast unhappily, going to meetings. Lots of people can do that. Only you can do what you do, and what you are doing now.
Love to you,
Lynnet
Congratulations to Eli, and to David, and thanks so much Sharon for posting this. It makes me weak in the knees to be a witness to such joy and pure goodness!
Sharon,
I agree with Heron. What a beautifully written, moving piece.
Congratulations to Eli and his school mates!
This was very.very moving. Thank you!