Monday, December 20, 2010

When there isn't a happy ending

I’ve been sad recently. It started when I began to look at how to revise Ben’s communication system on his iPod. I got to the section called “Friends” and realized it was a struggle to think of a single kid I could legitimately put in there. You know, a friend that Ben sees on a regular basis. That led me to recall the day almost 17 years ago when Ben was three days old and we met geneticists who told us he had a good chance of having a syndrome. As we tried to hang on to our hope, my husband asked: “Will he still be able to run and jump and play with his friends?” Ben has never had the strength to run or jump, but it’s his lack of friends that makes me sad. I know he loves the idea of friends. One of my cherished memories of him is as a young child waiting by the window, signing “friends?” on the day of his birthday party. In those days, there were kids who came.

A student in his class this year did give him a Christmas present – a video – and I made a note that we should call him and have him over. He came to Ben’s birthday party last year.

But as Ben heads into his 17th year, it strikes me that he’s one of the kids who won’t have a happy ending (in the traditional sense). You know how people like to hear stories about children who defy the odds, who ‘overcome’ their disabilities?

Somehow it’s not good enough to simply be an ordinary person with a disability. It’s as though the value of a person with a disability hinges on them doing something considered exceptional in the typical world. “He may have a disability, but look what he can do!” I’m sure that most of you can recall well-meaning people telling you stories of kids like this when your child was first diagnosed. At the end of the day, it all comes down to what people can ‘do,’ doesn’t it? Not what they can ‘be’ in the lives of others, but what they can ‘do’ to acquire status in the world.

My son won’t be able to ‘do’ any of those things. I’m not even sure that he wants to, if he could. He’s quite happy in himself, as he is.

Perhaps it’s because he’s nearing the time that other kids his age would go off to university and launch their independent lives that I grieve for him. Or perhaps it’s because I clearly recognize that there will be no 'breakthrough' in his development. That no matter how much time I spend working on his iPod or reading with him or buying him workbooks or making him secret messages he can decode on the computer to improve his keyboarding skills, there isn’t going to be a leap in his progress. Or perhaps I feel inadequate to create the meaningful life for him that rests on the shoulders of parents like me.

I mentioned this to one of our BLOOM bloggers – Amy Julia Becker – and she responded by saying: “I love hearing about the ‘amazing’ people with Down syndrome, but I love even more when I hear about the normal people with Down syndrome. The ones who just live their lives as everyday people, with challenges and delights. If only we as a culture could recognize their contributions instead of ranking them.”

I read a moving column in the New York Times Motherlode blog by Susan Senator, author of “The Autism Mom’s Survival Guide.” It’s called This Little Light of Mine. It describes an epiphany she had about her son Nat’s obsessive worry with diminishing daylight in winter – especially when the streetlights hadn’t adjusted. “For so long I made the mistake of believing, like so many people, that someone with autism could not connect with other people,” she writes. “That because Nat did not show how he felt about me in all the familiar social ways, that he did not care about me. But the streelights panic eventually showed me I was wrong. Nat watched me like a hawk during those times – he who couldn‘t sustain eye contact – hungering for me to say something, do something about the lights. It dawned on me that this could only mean one thing:…Perhaps it was actually his profound attachment to me that made him believe I was all-powerful, responsible for the lights and everything else around them. Perhaps it meant that Nat – though profoundly autistic – was deeply connected to me, after all.”

This change in how she viewed her son – “my openheartedness,” she says – led Nat to relax and be more easily reassured. “This shift, this growth for both of us has changed everything – because he can manage his feelings. I feel a new confidence, as if it’s okay for me to hope for things...” The author imagines her son eagerly waking for a day at his day program, where he may carry meals to elderly people. And while her son may not look to see the smiles of the recipients, she now believes he will feel them, building on the attachment he’s learned is there in others.

It’s a beautiful story. And I thought – maybe I’ll get there one day. Where I feel hope for Ben’s future, his adult life.

But then I couldn't help wondering whether Senator’s son wants to go to a day program? And if he wants to carry meals to the elderly?

Reactions:

21 comments:

Very thought-provoking and intense post. My son, who is the same age as Nat, and who also attends a day center where he helps with meal time, does, fortunately want to be where he is, doing what he does. He also volunteers at the animal shelter one day a week, which delights him deeply.

I won't pretend it's all we'd hoped for his future, that as my son and my students overlapped in age that there wasn't a profound sadness that year in teaching those students and going home to work with my son on third grade work. There was. Heartache arises fresh and out of nowhere with no warning. But, most the time we're doing good, all of us, happy with the lives we have built for ourselves, the successes we've carved out, the acceptance we've learned for the limitations.

You can have hope for a life well-lived, a life well-loved, regardless of whether your child achieves traditional success or not.

And it's more than okay to have down days, days of uncertainty and grief.

I had a similar thought at church yesterday. My little one is 5 and still blends in with the other little people. But what will happen when her behavior is less acceptable for the actual age she is?(right now she can act like a 2 year old because she is only five and so small.) There is the sweetest little girl that begs to play with her on Sundays and I wondered if they could be "friends" and how long it could/ would last when all the others grew up and had boyfriends and went to college and got married. A sad thought.

Oh, Louise, that's so much thinking. Almost too much thinking. But I've done it myself and will continue to do so, I suppose, with brief respite. Hang in there.

It's Dimitri's lack of friends that really gets to me. I can't know for sure, but I believe he wants friends, wants company other than his school teachers and parents...

Being happy with who we are is far more important than being exceptional, so on that score, Ben is ahead of many people.

This post really stuck with me, especially the part about people with disabilities needing to "do" and to be extraordinary. I have a passage about this phenomenon in my upcoming book. I posted that passage, along with an excerpt from your post, on my blog yesterday. http://choicesthatmatter.blogspot.com/2010/12/on-being-disabledand-ordinary.html Thought you'd like to know. Thank you for these beautifully written thoughts. I will be in touch in the new year, but for now, I hope you and your family have a lovely holiday season, and thanks for all your great work.

Thanks everyone! --

KWombles, I would love if you would write about your son for us. I agree with you about hoping for a life well-lived/loved. Did your son have any choice in which day program he went to or what he did there? I am glad he is happy. It sounds like you all have good lives. Thanks for understanding the times of heartache. Please consider writing something for us about your journey or life for your son and family now. Thanks!

Anna -- thank you for your message. I enjoyed looking at your blog and hearing about "G" and knitting.

I understand your fears for the future, but I also know we tend to get ahead of ourselves. I hope G finds friendship with the girl you mention! Let us know!

Thank you Elizabeth! I seem to recall from your blog that you were exercising recently. I think that's what I need to do. Get the endorphins going!

Thank you Emma. Yes, it hurts when your child's friends are people who are paid to be with them.

What about Dimitri at school -- are there children there he is fond of? Or at riding (I remember the video of him riding). Keep us posted and thank you for keeping in touch.

Hi Ellen -- Great to hear from you! You will have to let us know when your book comes out. I will head over to your blog -- thanks. Happy holidays to your family too!

Extraordinary, exceptional, excellent, phenomenal, and superb are all words a person with a disability must know and achieve throughout their lifetime, or in some way, if he or she merely wishes to be noticed as a human being. Hence, some might say that I’m sitting on the winning lottery ticket, as I possess a gift and passion for the written word. However, in the New Year that is ever-quicker dawning upon us, I will not be using this talent for the purposes of inclusion, friendship, or acceptance from others, but to honour those common and average people who continuously make the greatest difference in bettering a life.

Please believe, “Ben and Louise Kinross are wholeheartedly on my list!”

love
matt

A very powerful post! I have been caring for my son, Adam, for the last 12 years...non-verbal, non-ambulatory as the result of a near drowning. In November I experienced a mirror of this post in my own blog and it was based on Elie Weisel speech in 1999 in Washington entitled "On Human Indifference"...life which people perceive makes no difference...very powerful, resonates with the community of the disabled and caregivers.

Louise, this post is sad, but made me smile as I relate in so many ways.
I too feel unable to provide the meaningful life that Julia deserves and I wonder how many children with disabilities live lives built upon the dreams of others. Just typing that out made me realise that lots of people live their lives based on what their parents or others wanted for them. ;)

Julia's pediatrican once mentioned to me that he supports our local famous players theatre and I told him that it was not my dream for my child to be a puppeteer.

I have the same dreams for both my girls, the reality is not going to play out that way. I try to focus on being happy today and appreciating what we have, but have to admit I am mostly unsuccessful.Even though we are among the lucky ones, and this task just seems too much.

Lisa

Thank you Matt for your kind message! Happy Holidays! Louise

Welcome to BLOOM Phil! I'm glad you found us. It sounds like you have a lot to teach us.

I dropped by your blog and enjoyed hearing about Adam and your family. Others should check out the book Phil's wife has just had published called Ceramic to Clay: Go to Phil's blog at http://healingandempowerment.blogspot.com/ and scroll down the right-hand side for a link.

I hope you will write something for us about your experiences. Happy Holidays! Louise

Hi Lisa -- I had to laugh when you wrote about the puppeteer. It is exactly my point that I don't want our children's futures to be defined by the narrow choices others hold for them. If my kid wants to be a puppeteer -- great! But not because that is one of the only 2-3 options.

I know I have to get my act in gear to start a circle for Ben and begin some planning to try to identify what are "his" authentic dreams.

I have a lot of issues when people say that autistic people have some "thing" they excel at or push it in your face and say "hey, I'm/my kid is autistic and he's an artist, musician, mathematician etc". Yes, some may be those things and it's become a stereotype unfortunately.... but most are just as average as mine are.

I have one that's gone from non-verbal mild PDD to mild NLD at age 11. He still doesn't know he's "different" and I have hopes to pull the IEP by highschool. I'm not worried about him.

It's the younger... although amazing, learning, I have doubts he'll ever manage to live without some kind of care. Which is why I'm trying to find things just for him. Right now he loves swimming... they will take him on the local team and train him and enrol him in special olympics. I'm not going to make him do it.... but will continue to introduce him to it... in the end it has to be his choice.

Louise, what you wrote about friends brought a tear to my eyes. The image of Ben signing "friends?" put me in mind of my own son Gabriel. When he was in younger grades, he was invited to so many birthday parties...because it was the social convention to invite the whole class so no one's feelings would be hurt. In later elementary, that practice disappeared, and so did the invitations. In the summer before 8th grade he was in the hospital for anorexia and he got a piece of mail at home. I took it to him, thinking it might cheer him up. It was an invitation from a classmate to a "back to school party." He looked at it and said flatly, "Oh, he must have invited the whole class." His voice wasn't sad, just matter-of-fact. It broke my heart.

Thank you for this thoughtful and thought-provoking post.

Beautiful post as always--very thought-provoking and honest. Thank you for your words and your heart. :)

These posts reflect my heart. I have two sons on the autism spectrum and the only time I feel joy is when I put blinders on and accept them just as they are. One of my sons is 21 and has found his place out in the community, living life to the fullest at a program called The Centre for Dreams. My other son is struggling to make it in University and it is heartbreaking to watch him flounder. He has lost his sense of purpose and does not know which way to turn. For now I make it one day at a time but I can relate to these posts. Thanks to all who share them.

In answer to your question: Nat loves Meals on Wheels and any job he has had. He knows that he is successful in them by the way people treat him and delight in his presence. He does not have any "exceptional" skills except that he is really a sweet, sunny person. Sometimes quite stormy, but who isn't? My point in the NYTimes post was that maybe we should start with different assumptions about some people with autism. If you start from the point that they have a communication disorder of some sort, but that they still might WANT to connect, they just don't know how b/c of the disorder... then you may end up with some very different conclusions about (and relationships with) autistic people! I think Simon Baron-Cohen and his Theory of Mind is a narrow construct that everyone has swallowed and it just might not be true at all.