Monday, February 13, 2012

Hearts in the air

It must be in the air.

On Saturday, I told Mirtha, Sophie's Saturday caretaker (so that I can ferry the boys around to their sports games with a semblance of "normalcy") that I wished Sophie had some friends. I say it nearly every Saturday, think it every day. Robert Rummel-Hudson of Fighting Monsters with Rubber Swords wrote about his daughter Schuyler's yearning for friends today. It was titled Alone.  Louise Kinross of Bloom had a heart-breaking post on Huffington Post titled My Child's Dream: To Have Friends. Not a day goes by that I don't drop Sophie off at school and watch her go inside with her aide without feeling a catch in my throat and an ache somewhere deep. I don't know if Sophie yearns for friends, if she feels isolated or, at best, judges the special class, with "kids like her," as something less than ideal. I'm aware that I could perhaps be projecting this desire for her to have friends -- maybe I just want her to have friends, but she is happy unto herself.

I don't think it's as simple as a projection, though. I think my yearning -- and I'd venture to speak for many parents like myself -- for friendships for Sophie is just the tip of a greater heartache that Sophie is not, essentially, included in the world around her. Yes, she has a loving family with brothers who adore her and two parents devoted to her care and well-being. Yes, she has two amazing caretakers and an aide at school that are also devoted to her. She has friends in her classroom, several young women and men who have milder disabilities and who seem to really enjoy her company. But Sophie is going to be seventeen years old in less than a month. She has never been invited to a party or a dance or a get-together at another young person's house. She has no visitors, no play-dates, no social groups, no "typical" friends. Over the years, I have tried in various ways to increase her social life. I've had birthday parties and invited the children of my friends to come over to celebrate. Most barely acknowledge her. I walk with Sophie all over our neighborhood, but it's really only adults who stop and say hello. While my friends have always been supportive, I can't say that any of their children have expressed any interest in Sophie outside of inquiring about her general welfare.

I don't blame them, though. I wish it were otherwise, but I understand.

We live in a culture that separates the disabled from the able.  However well-meaning, nearly all social structures -- educational, health and physical/sports -- are not inclusive. Most private schools don't accept children with disabilities. In public schools, special classrooms further isolate interaction. Even my sons' charter school, incredibly inclusive of children of all races and socioeconomic status has no children with moderate to severe disabilities. There are no children with cognitive disabilities; I've never seen anyone who is blind or deaf or in a wheelchair. I've mentioned it to some people I know, and each has either laughed nervously (is she going to sue us?) or shaken their heads in sympathy, commenting on the expense. A very good friend of mine tells me about a special place in Chicago where people with disabilities both live and visit in various day programs -- a beautiful place, she says, I wish there was some place like that for Sophie. I don't tell her that I don't want Sophie squirreled away with people like her. When we were members of our local Catholic church, I spoke to two different priests about ways we might better include people with disabilities into parish life. I was met with indifference and, in one conversation, was told that my despair and heartache would be eased in the next life. 

With the possible exception of the priest, I'm not angry about any of this. I'm just plain tired. I wish that I had the energy to make things different -- to figure out some way to provide for rich relationships between Sophie's peers and herself. I know, definitely, that Sophie's life would be enriched by friendships; I know, too, that Sophie's peers would be enriched by her.

Lisa Belkin of Huffpost posted a link to Louise Kinross' Huffington Post article. She introduced the link with this statement: A sad something that you -- or your child -- just might be able to do something about.

Those of us who've parented in this particular world for some time know that it's possible to hold certain kinds of sadness inside and still feel joy. I hold that sadness in my heart. I can love the world as it is in this moment and simultaneously wish or hope for something different. That's the trick, I think. Hearts in the air, heavy but floating.


  1. Ah, Elizabeth. You've gone and made me cry again. God, I love you. And your beautiful children.

  2. Thank you Elizabeth for this beautiful piece of writing.

    I think you hit on it when you wrote about how our children not being included 'in the world' is larger than friendships -- and how this juxtaposes with the lives (social and otherwise) our typical children are engaged in.

    Your point about how private schools NEVER accept children with moderate to severe disabilities is soooo true. I learned this the hard way when Ben was very young and I naively made a bunch of calls. I will never forget some of the highly offensive things said to me by administrators at these schools.

    I LOVE this photo of Sophie and I join you with my heart in the air! xo

  3. Oh, Elizabeth, I so understand. Adam was 12 at the time of his near drowning. Had a girlfriend, loads of friends, load of teammates, loads of family! After the accident, it took about 6 months for everyone to disappear...13 years later the same people still are absent. I make no excuses for these people. I do not accept it, but challenge. Some of Adam's uncles and aunts have seen him once in 13 years; there are no friends; cousins do not acknowledge his existence. I do not forgive nor accept this indifference.
    I blame the adults, CSNW "Teach your children well",
    "Can you hear and do you care and
    Can't you see we must be free to
    Teach your children what you believe in.
    Make a world that we can live in."
    Our kids cannot be invisible, adults must be responsible! Sorry, it is my biggest trigger!

  4. "I can love the world as it is in this moment and simultaneously wish or hope for something different."

    Funny, I can say "I can hate the world as it is in this moment and simultaneously wish or hope for a hell of a lot of differences."

    And with all seriousness and nothing at all creepy, if you were local, I'd be counted amoung Sophie's friends, me and Pearlsky. But that's not the same. I know.

  5. Elizabeth. Oh, Elizabeth. Sigh. That's all I can say. Sophie has the very best friend in you. You are some kind of wonderful.

  6. I understand this, all too well and we, we are only 5 years into 'this'.

    I watch the children, big and small, start to pass and then abruptly and briefly pause in front of Zoey and just stand there. Literally just stand there. Gawking at her, is the best word I can come up with to describe it. Adults for that matter look at her and just do not know what to make of her, so why would I think that the children of those same parents, would know how or even care for that matter,to interact with her.

    We had a heart breaking 'mean girl' thing happen at the soccer fields a few months back, by little 5 year olds. I glimpsed in that moment, what say 10 years from now will perhaps look like. Because she is not a typical child with Down syndrome, amongst that group, she is even on the outs. We did get an invite to a party at a Jolly Jump place but seriously? That was , well, just down right sad.

    I left you a message last week about a meeting at my church that I had about beginning a ministry to do just what you spoke of. My reception of the idea was quite different than your and come hell or high water, I am going to make it happen.

    I love you my friend. And love your girl.I wish in these moments where the sadness seems crushing to your heart, I wish that love was enough.

  7. Moved to teary eyes and a sad heart here as well.
    I had dinner this weekend with a friend and she spoke of this. Her son is autistic but clearly knows and expresses his difference, his desire to "belong". He is 22. It breaks a heart.

  8. It's heartbreaking that we can't find a better way to include everyone. I wish I had a solution, but I lack the talent.

  9. This post makes my heart ache.

  10. My children were fortunate enough to attend a public elemetary school that is the special needs "center" in a town that parents w/special needs children move into because the services are so good. Since Kindergarten, my daughter has been included in a weekly lunch bunch group w/ both typical and special needs children run by a school psychologist. As a result, she has a friendship w/ a child w/ Aspergers that dates back six years and recemtly attended her eleventh b'day party w/ two other girls (and had a great time!) She also can go and help the specialty teachers in the special needs classroom There is an annual diversity day at our school where the children "experience" different disabilities. It is commonplace for our assemblies and concerts to be interupted by loud noises and everyone roll w/ it. When the children move on to the middle school the kids from our school are known for being "kind" and inclusive. I feel very fortunate that my quote typical children had the opportunity to attend this school. But I will admit, there is still more my school could be doing...I agree w/ your wish for the world to be different, perhaps w/ a little ( or a lot of) education it can be. It may take a village though.

  11. Oh, Elizabeth. Your deeply thoughtful self has gone and done it again. Lifted a veil on another hidden part of life that we walk right by all the time.

    My heart is heavy with this too, but your insight gives hope.

  12. Just read this to the girls, it made them so sad. I wish we were still there, they said they would love to invite Sophie over.

  13. i already had tears in my eyes after the first paragraph. thank you... for seeing her. for loving her. i'm praying for a friend....

  14. This is a wonderfully insightful post, Elizabeth. An essay that calls for sending out.

  15. Hearts in the Air - great book title. I relate to so much in this post and am too darn fried tonight to be coherent -- but as always, you are articulate even for 10 of us. Thank you.

  16. I've been thinking a lot about your post since yesterday, Elizabeth. There are two reasons. The fact that it is beautiful, touching and impossible to ignore is the main reason.

    The other reason, though, is something that strikes close to my own heart: invisible disabilities. This is not a compare and contrast thing, please note, but what's interesting is that I know that at your son's charter school, there are, in fact, many kids with cognitive disabilities. Sometimes they get labeled with things like dyslexia, Asperger's, ADHD, PDD-NOS, or whatever other alphabet soup we come up with, but for the most part, you'd never know by looking at them. Their disabilities and many of their challenges are invisible. Yet, I'm struck by how they and their parents go through so much in common with what you describe so eloquently above. It's a very different experience, without question. But there are commonalities that mean that we are all less alone than we think, are all more united in what we must be attentive to and should be united in what needs to change.

    By next Tuesday at tea time, if possible!

  17. Gregory K: You have raised an important issue -- invisible disabilities and perhaps the silent suffering of those children with them and that of their families. I agree with you entirely that there are commonalities and actually thought about bringing them up in the post as I wrote it, but it might have then been the longest post on record! so I'm grateful that you did so. I think the word "invisible" is key here -- why are these issues "invisible?" There is still so much shame and fear surrounding disability -- of even the mildest forms. Our culture demands that we fit in with certain standards -- we demand it of our students in particular. It would be great to have a real discussion -- where IDEA is defined, where we talk about ethics and disability, disability rights, what it means to be inclusive, really inclusive and not just nominally so --

  18. I figured you probably had thought of bringing these issues up. The frustration is that there are commonalities BUT there are differences, too... and those differences probably are the areas that consume most of our energy (emotional and physical). And your post was long and wonderful and didn't need more. But hey, that's what comments are for :-)

    I think the internet is actually a really important part of how this all changes - how the invisible becomes visible. Instead of the occasional memoir or biography, there are now thousands of stories being told in near real time. Stories that show the experience of kids and parents - that confront the shame, the pain, the frustration, and the humanity. That show successes and failures of all of us, despite best intent.

    My own take is that if you are not living through the experience, it is exceedingly difficult to understand it. Folks bring a preconception to the table and are stuck with it, despite empathy. Yet I think of how we look at autism and Asperger's so differently after hearing from people like Temple Grandin and research from so many. What's happening now online, I hope, will open up more conversation and give more specifics about what is truly going on on a human level. And I think the conversations HAVE to turn to the social-emotional aspects more than the academic when it comes to learning issues.

    It's an ugly, messy process, and I think so many folks who are the most eloquent voices in the area are so busy caring for their family and themselves that it is hard to fight on a bigger scale. I wish I knew the easy solution, but, of course, there isn't one.

  19. I don't know what to say. I love your openness and willingness to talk about difficult issues and bring them to light.

    I hope that this post sparks some discussion and sincere thought for a lot of people.


  20. i feel you. i feel every word and i am SO there with you.

    that last sentence killed me.

  21. "I can love the world as it is in this moment and simultaneously wish or hope for something different. That's the trick, I think. Hearts in the air, heavy but floating."

    yes. and i'm sorry.

  22. I cannot tell you how many times I have heard my daughter (in tears) say, "why won't someone play with me?"

    Breaks my heart, daily.

    Here is bright spot. It started with a determined mom.

  23. This is heartbreaking, and so beautifully written. I love the last paragraph - so true.



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