learning to live and love from a new perspective

Archive for March, 2016

Disclosure

G turned eight three weeks ago. With this milestone, has come an increased awareness. Slow at first, but picking up speed.

IMG_3342He’s reported to me many times in the last few months that something feels difficult for him to do. “Please stop yelling at me,” I’ll ask him, in as neutral a voice as I can muster while being screamed at for leaving a trace of peel on his apple slices.

“I’m doing the best I can.” He’ll reply, as genuine tears begin to form in his eyes. “My brain is saying ‘don’t yell’, but my voice isn’t listening. It’s hard for me.”

On a parallel track, G has had an increasing interest in his Social Thinking
books. Ever since he was in preschool, his teachers have used the Social Thinking curriculum as a tool to support his interpersonal skill development. Recently, I’ve purchased a number of books (and games, and posters, etc) for G to have at home. He loves reading the books and studying the characters. He also likes reading the books’ introductions- all of which describe Social Thinking as a curriculum that is beneficial for children on the autism spectrum.

And so, G was sitting on the couch a few nights ago, reading the introduction to one of his Social Thinking books. In the introduction, it stated that the book was designed to support the development of social pragmatic skills for those with deficits in this area, such as children with autism.

G was reading to himself, the words barely audible. But then, he repeated the last few words out loud. “Those with deficits in this area, such as children with autism.” He paused, his expression twisted with bewilderment. The word autism was familiar to him. He’d heard it before, but he didn’t know what it meant. A new awareness was seeping over him. He looked at me, questioning. “Children with autism? Mom, do I have autism?”

I froze. Deer in the headlight kind of frozen. But luckily, only for a moment.

“Yup!” I responded cheerfully. “Yup, you do. Do you know what that word means?”

G shook his head no.IMG_3341

“It means that your brain can do all kinds of amazing things. Your brain is really good at lots of things. Can you tell me some things your brain is good at?”

It doesn’t take G long to respond. His brain is good at LOTS of things. “Math. Reading. Science. Imagination.”

I reply, “Yes, that’s true. Your brain is really good at all those things. Your brain is also really good at remembering things- even if you only see or hear them one time. That’s all part of your autism.” I let that sink in. Then I continue. “Now, are there any things your brain is not so good at?”

This question is harder for G to answer. He’s quiet, so I step in. “It’s hard for you to remember the rules sometime, isn’t it? Like to know what is expected or unexpected behavior?” He’s watching me, quietly nodding. I continue. “It’s also hard to have a conversation sometimes, right? Like to think of the right words to say?” Again, he is nodding. “That’s part of your autism, too. Would you like to watch a video to learn more about autism?IMG_3382

I promised him we could watch a video at bedtime. In the interim, I previewed a few clips on You Tube. Most of the clips I could find were about kids who had a sibling or classmate with autism. The focus of the videos was to explain that child’s (strange) behavior to others. Nope. Not what I was looking for. I found one video where the main character was a 13 year old girl with autism. She explained in a straightforward manner about the great (and not so great) ways her autistic brain functioned.

I promised myself I would continue the search for useful material, but decided to show the clip to G as a starting point. He seemed to feel mostly satisfied with what he saw. There was one upsetting part. There was a graphic of 68 little tiles. 67 of the tiles were white. One of the tiles was blue- representing the 1 in 68 kids who hav autism. “What is the blue tile, mom?”

Even as the words were coming out of my mouth, I was starting to anticipate their impact, “The white tiles are kids who don’t have autism. The blue is a kid who does have autism.”

With that, he burst into tears. “Why do I have to be the only one? I want to be like everyone else!”

Oh, my poor heart. How it ached to see him cry like that. Someday, he will know that there are many, many blue tiles out there, just like him. Someday, he will know that there really is no such thing as a plain white tile. Everybody’s brain is unique. Some brains have ADD, some brains have off the charts IQ, some brains have epilepsy, some brains have photographic memories. Some brains are artistic, socially savvy, verbal, non-verbal, visual, introspective. Some brains are a combination of all of these. It’s not just “autism” or “not autism”.IMG_3383

But this is all information for another day.

I close my computer and give my boy a big hug. “I love you, G.” I whisper into his sweet-smelling hair. “I love every part of you. I love your silly jokes. I love your awesome smile. I love your bounciness. I love your amazing math smarts. I love your squeezy hugs. I love your autism. I love you.”

It’s a relief to have this particular conversation out of the way. It’s my job to help G feel comfortable and proud of who he is. It’s my job to help him find his tribe- both those with autism, and those who don’t have autism. It’s my job to bring others into our world, and help them understand G- who he is and what he needs. I think this job will be easier now that G knows he has autism.IMG_3384

I anticipate many more conversations in the future- both easy and challenging. Through it all, I am proud of my boy and proud of the thoughtful, independent, self-aware person he is becoming.

 

 

 

 

 

 

 

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Do What Only You Can Do

Our community has just suffered a terrible lost. Gina Fried, a long-time teacher at our Religious School, and wife of our Rabbi passed away on Sunday after a long battle with cancer.

Gina wasn’t just any teacher. She was the kind of once-in-a-lifetime teacher who inspired all those around her. Gina communicated to her students, through words and actions that she valued them and that she believed in them. She empowered her students to find their own voices, and discover their own gifts, so they could use their gifts to make the world a better place.

I am grateful that I had the opportunity to be Gina’s colleague at our Religious School for six years.

Gina died on Sunday. The funeral was yesterday (Tuesday). About mid-day on Monday, I came to the realization that I had neither the time nor the emotional capacity to adequately prepare for Religious School and also attend the funeral. I felt conflicted and bitterly disappointed.

I went to sleep on Monday night feeling totally crappy. After tossing and turning for several hours, I fell asleep. And then I began to dream. My dreams were a compilation of an educator’s worst nightmares. All teachers know that when you’re super-organized and well-prepared for a lesson, that it has a better chance of going well. My dream was the exact opposite. School started. Nothing was prepared. Everything went wrong, including bad words written on the white-board in PERMANENT MARKER, a game of Monkey in the Middle with me as the monkey, and a small fire set in the kitchen that resulted in char-broiled hamentashen.

Just as I was successfully putting out the kitchen fire by dumping a bottle of Manishevitz on the last of the flames, I woke up.

As I drifted back to consciousness, I heard Gina’s voice. And in her completely direct way, with a mix of love and irreverent humor, she said to me exactly what I needed to hear. “You know, Alison, I don’t need to see your butt in a seat at Mishkan Tefillah to know that you are thinking about me. You go do what only you can do today.”

Religious school was lovely yesterday. Our Director of Congregational Learning led a short assembly. The kids who had been to the funeral shared their experiences. Other children spoke about their experience having Gina as a teacher. Still others didn’t know Gina well, but shared stories they had heard from their parents. We sang “Eli Eli”– a song that talks about how things (and people) can live on in your heart. After that we moved on to some super fun Purim activities. I’m happy to say that none of the things in my dream came to pass, and the hamentashen were delicious. I felt privileged to help create the space for our kids to come together yesterday- both in seriousness and in fun.

As for me, I know that Gina’s legacy of empowering people to use their gifts to make the world a better place will live on. Starting with me.

You are an inspiration, Gina. You will be missed.

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