Mosh Pit

Do you want to hear the good news first or last? It's not actually news but more of a rehash. SOS. Save Our Ship and Same Old Shit. I got a Christmas greeting card from our new health insurer. It was a snow globe with a cheerful winter scene inside. Despite coverage not beginning until the first of the year, I suppose Anthem Blue Shield is trying to butter me up. You know -- all that thank you for entrusting us to insure your good health and looking forward to a wonderful relationship in the new year. Wouldn't it be awesome if their season's greetings included Happy Hellidays and Looking Forward to Ripping You a New One in 2016! I'm thinking about printing the e-card out and using it for target practice -- oh, wait -- I don't own a gun and have already refused to even acknowledge those who believe it's their right or need to carry one. Maybe, instead, I'll use the card to practice spitting, or maybe blowing marijuana smoke rings. Wait -- I haven't really spit on anything or anyone since my sister and I fought over Parcheesi back in the mid-70s, and I don't smoke marijuana despite my fervent belief in its medicinal powers. May the new year knock some sense into our legislators, persuade them that accepting money from Big Pharma and the NRA enslaves you to drugs, fear and death.

Anyhoo.

Where was I? Christmas greeting cards from your future health insurer (for whom you've already girded your loins in expectation of the Fight Over Formulary and Non-Formulary Drugs) are irksome and seem a waste of the cloud, no?

Here's some good stuff. I spent a few glorious hours in Sophie's school classroom this morning. I brought fresh donuts and about nine Trader Joe's gingerbread houses for the kids to put together and decorate. They're a rowdy, fun bunch of young men and women. They are Asian and Hispanic and African-American and Caucasian and Christian and Orthodox Jewish and Muslim. They sang Christmas carols, danced and laughed and wiped frosting all over themselves. They worked very hard throwing sprinkles over the roofs and piled the little sugar people up by the front door. The teacher declared awesome mosh pit! and they all giggled. If you need a bit of cheer in your life, if you're completely demoralized by all the bullshit -- by the freedom lovers and gun lovers, by the war mongers and terrorists, by the expressions boots on the ground and collateral damage, by the Federal Reserve -- you should visit a class of young adults with disabilities.

You won't feel gratitude for what you have and what they lack. You'll want what they have and what you lack.

Penultimate Day in Special Ed

Today was Sophie's second to last day of twelfth grade for the third year in a row. Oliver and I brought party sandwiches and chips to celebrate.  I imagine those of you who don't have children with differences might get a little nervous around a bunch of adults that are not the yoozsh. They talk in different tones, if they talk at all. They might screech hello! twenty times in a row when they see you. They might bump into things around you, including you. They ask the same questions over and over. Sara pulled out her cell phone and showed me a picture of Sophie and herself from about ten years ago.I'm not kidding you. Sara has Down Sydrome and the biggest smile you've ever seen. She also showed me a photo of one of her fourteen nieces and nephews. Sara is Orthodox and has a lot of brothers and sisters. I told her to say hello to her mother whom I haven't seen in years, and Sara beamed at me.

I don't visit Sophie's class that much anymore. I trust that the life she has there is a good one and that she is well taken care of by her spectacular aide and wonderful teacher. Many of the classmates have been in school together since they were five years old. Many of them know Oliver and look forward to seeing him a few times a year.

I'm biased, of course, but Oliver rocks.

The kids in Sophie's class are not scary. They are not to be pitied, nor are they placecards for your gratitude. None of that there but for the grace of God go I bullshit. It's not hard to reach out and recognize them as fully formed human beings with the exact same rights to live on the planet as you. Try it.

Otherwise, I might have to feel sorry for you and think, there but for the grace of God go I.

Birthday Celebrations, part two

We like birthdays around here, so I think I'll just post photos as we go. About an hour later than usual, Sophie woke up yawning and smiling,

She seemed genuinely happy when The Husband and I wished her happy birthday. I wish the boys had been there to see how engaged she was, but they had already left for school.

I had run out earlier in the morning for the traditional birthday donuts that we piled high next to the presents. Again, by the time Sophie got up, only the pink one on the top was left, and she ate that uncustomary sugary breakfast treat with scrambled eggs. We put aside the presents for the afternoon, when the boys came home, but I gave her one outfit -- a tee-shirt, jeans and soft sweatshirt.

You know what? She was all smiles this morning, making outrageous eye contact. Honestly, it took my breath away. There's a tiny part of me that still holds hope that this day will bring no seizures.

A little later, I brought a cake to Sophie's class, and all of her friends there, teachers and aides sang happy birthday. There's a warmth to her school world that always takes me by surprise. I'm grateful for all of it. Forgive all the photos, but I just wanted to share a little of the joy and celebration with all of you!

Part 3 is a big birthday beach bash on Sunday. If you're in Los Angeles and want to join us, email me at elsophie AT gmail DOT com.

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?

Listening to Bach in the school parking lot

Friday Redemption (not detention) on Saturday

Hilton Head Island, 2010

Yesterday, I drove to Sophie's school with a heavy heart. I'd been on the phone all morning -- with The Neurologist who has scheduled an MRI for Sophie, with the MRI folks who needed an authorization from the insurance company, with my caseworker at IHSS (or her answering machine) and with the billing office of the home healthcare agency that provides the nurses who administer Sophie's IVIG every six weeks -- I'm not kidding. This is what I do most days, in between the shuttle service that I operate for the young boys of the city, and it never seems to end.

Anyway, I was driving to pick Sophie up from her high school, and I wasn't feeling good. Even though I've started this boot camp exercise regime and am pleased that I'm finally doing something about the physical side of myself, I still hate to exercise and hate, even more, the soreness I feel for days afterward. I feel incredibly out-of-shape and ungainly -- and if I didn't hate complaining about it more than being it, I'd spend this entire post whining.

But I'm not because this is about Redemption. Salvation. Grace.

I pulled into the giant high school parking lot and a handicapped space right next to the line of yellow school buses that wait for the kids to spill out and into. Sophie isn't yet on the bus line because this is the Los Angles Unified School District and things don't happen simply here. That's another story altogether. When I get to school, I call Sophie's aide on her cell phone and then wait for her to bring Sophie out. While I'm thankful for cell phones, this isn't the grace part of the story. Ms. P pushes her in her stroller/wheelchair while a boy from her class walks behind, pulling Sophie's backpack. Today, the "helper" was a young man named D who I happen to know from Sophie's elementary school years. He has some birth defects and moderate intellectual disability, is twenty-two years old and in his last year of this community-based instruction class.

Hi, D, I said as they walked toward me. Thanks for helping Sophie!


Who are you, D asked me bluntly and turned to Sophie's aide. Who is that lady?


That's Sophie's mother, Ms. P said.

You're Sophie's mother? D asked and then added, Sophie had a seizure today. She had a seizure today and I saw it with the teacher.


I'm so sorry, D., that you saw a seizure. They're hard to watch, but I'm glad that you were there to be with Sophie, I said. I lifted Sophie from her chair while Ms. P held the wheelchair and then I guided a very unsteady Sophie to the car, lifted her into the seat and started to put on the seat-belt.

I saw Sophie had a seizure today. And I didn't like it, D said a number of times, and when Sophie was safely buckled up I walked around toward the back of the car and said to D, I know; I don't like when she has seizures either. But I'm glad you were with her, D. I'm glad that you're her friend and can help her.


I love her, D. said, almost over my own words. Then he turned toward Sophie in the car and shouted,

I LOVE YOU SOPHIE, I LOVE YOU!

My heart almost burst open right there, but I managed to thank D and tell him how much that meant to me and to Sophie.

Can I hug her, Ms. P? D asked, then. And he meant me.

Ms. P gave me an O.K. sign, and he leaned over toward me, lay his head on my shoulder and then quickly pulled it up, shouting how happy he was to hug me.

Thank you so much, D., I said. You are an amazing guy.

Then D high-fived me and high-fived Ms. P, all the while exclaiming that he had hugged Sophie's mother.

Thank you, D. 

Thank you.

Two Things

ONE

Sophie had her first real day of school yesterday, AND IT WENT WELL. It's a giant high school in the middle of Los Angeles, and she's in a rather large class of kids and young adults with various "issues," but we know several of them from her old elementary school, the teacher is a very cool guy, and Sophie's new aide seems terrific.

Whew. Can we all just wipe the sweat off our brows, breathe a sigh of relief and offer up thanksgiving? Hallelujah!

TWO


I'm going to be speaking about epilepsy and the upcoming Epilepsy Freedom Walk on a radio talk show this morning. The broadcast is called The Conner Bubble, recorded out of Pasadena City College. It's a call-in show, so if you're interested you can listen on Lancer Radio, 88.9 on the FM dial. The show is from 12:00 PM -- 12:28 PM Pacific Time. Here's some more info:

Call-in Telephone Number: 1-626-585-7227 -- Call me with a question!


Live webcast: www.lancerradio.org (I have no idea how these things work, but I'm assuming you can actually listen online! These here internets are amazing...)