Things People Say: Beautiful Edition*

I stopped by my friend Craig's house today to check out his xeriscaping (that sounds sort of obscene or personal, but for those of you who live in areas of the world where it rains more than once every four years or so, it's what we do to cope with drought) and also had the pleasure of seeing his friend Tom. You might remember some years back when I wrote about Tom and his husband Ed whose 80th birthday party I had the privilege of attending and providing the cake. Tom and Ed have been together for well over forty years and listening to their stories about growing up gay in the thirties and forties of the last century, as well as being a couple in this one, were sobering, hilarious and fascinating. Both are the dearest and warmest of men, and it's such a privilege to run into either of them, even if was about 110 degrees outside. Today I had Sophie in the car, and when Tom walked up to it, I introduced him to Sophie. He said, Hi, Sophie! and I quickly told him that she wasn't able to talk but that she understood him. Tom said, just as quickly, Well, we have enough talkers on this earth, so that's just fine! 

Then the skies opened up with rain, cleansed my soul, and plumped up my heart so that I jumped out of the car and pledged my eternal troth to Tom for being such a beautiful, inclusive man. Just kidding on the rain part. I would have planted a giant kiss on his lips if my own weren't so damn dry. I did admire Craig's xeriscaping, though, and shed a bit of rain on my own when I drove away. I've said it before, dear Reader: sometimes it IS the small things that can make or break you.










* Things People Say is a device I use throughout my book in progress, but they're generally stories of more outlandish things people say when faced with Sophie's disability. It's been my experience that the sort of comment that Tom made is a rare exception to the rule.

Orange and Pink: Stirring Things Up

I wish those of you who aren't could be a part of the discussion on my Facebook page about an article I posted today called Why Do President Obama's children go to a segregated school? Here's the link, and I'd love to hear what you think. I'll start you off with the same thing that I said when I posted it. As soon as I get their permission, I might post some of the other comments because they're incredibly enlightening -- on both sides of the debate.

Elizabeth Aquino

21 hrs · 

Please read and think about it. And if you have children in a private school, let me know if your children have any classmates with disabilities.

Why do President Obama’s children go to a segregated school?

Not one of Sidwell Friends School’s more than 1,100 students has a physical disability.                                       

THEHILL|BY JENNIFER LASZLO MIZRAHI

Inclusion, Disability, Iraq, and THCa

There's so much to ponder these days, don't you think? There's that Tumbler going around written by a young woman who cares for her disabled 31 year old sister because her parents died. They live in California and are facing the alarming lack of services and obstacles to getting those services that those of us who already live here are aware of to a nauseating degree. I and some other folks are "on it," though. Stay tuned. Then there's an interesting discussion on my own Facebook page, centered around this article, about the segregation of children with physical disabilities from the elite private schools in Washington, D.C. Some of the commenting got a little testy, including my own, but it's discouraging to think that in 2014, we're still having to not just fight for equal access and inclusion for all children but continue to bring awareness to these issues -- even in the biggest most progressive states in the country.

Sigh.

On another note, our more than a decade long war that resulted in hundreds of thousands of lives lost, thousands of those Americans, trillions of dollars spent and country bankrupted both financially and morally, seems to be imploding again.  That foreign policy "initiative" might have been the worst one our country made in history. And if I have to see or hear that crazy John McCain say anything else about it, I might scream. Honestly, the man should just retire to his hometown in Arizona and play golf. What do you think? Should we just continue to bury our heads in the proverbial sand or protest in some concrete way?

What do I know, though, about anything really? It's a full moon tonight -- the Honey Moon -- and while Sophie's seizures have picked up a bit, maybe because of it, I'm looking forward to seeing it from Calabasas where I'll be driving Henry later for his first club lacrosse practice. In the meantime, for the record, we've added THCa to Sophie's cannabis regime. I'll keep you posted.

Friendships for Sophie

I've written about this subject before -- probably many times -- but I can't say anything positive has happened, and the fact that Sophie has few friends, other than those she sees daily at school, and no social life outside of our family, is one of, if not the biggest, heartbreaks of my life. I don't think I need to go into it, here, -- the heartbreak part -- because I know you understand it.

Last night, while cruising around on Facebook, I saw this article posted by Segev's father, Eric. The Canadian article is titled Learning and Teaching How to be a Friend, and makes the startling statement that perhaps it's not the child with disabilities that needs to learn to make friends, but, rather, the typical peer that needs to learn how to be a friend to someone of difference.

It occurred to me then that it was no longer Hannah who needed the training on being a friend. It was her peers. They needed to be taught how to be friends with a child with differences, so that when someone like Hannah did "tap them on the shoulder and ask 'Can I play?" they would answer "yes" and know how.

The article discusses a program called Expert Friends that not only teaches children the social skills necessary to interact with children with disabilities, but also trains teachers to help build bridges between these children.

Its goal is to stop the isolation children with special needs often experience and help teach typical children effective communication skills so they can form valued friendships with children they might otherwise have overlooked.

Here's a quote from the article that explains what can happen when children are taught the skills they need to interact with another child with differences:

"Prejudices we are not born with. All kids want to play, but they're giving up after trying the conventional way to interact [with a special needs child]. This teaches them how to figure out a different way. They feel good about that. I literally see kids wiping their brow now they are taught how to respond," says Bonita.

I found this a remarkable idea, and I'm thinking that perhaps with the help of some people in my own community I might broach it to our mighty Los Angeles Unified School District (hence, the photo at the top of this post).  Who wants to help me?

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.