Archive for October, 2021

The past two times I’ve visited Boo have been on a Wednesday, around dinnertime, when his house has the staff available to help keep everyone safe. It felt strange, like Jonah and I were famous and required bodyguards to watch over us. I am grateful, though, for otherwise I’d be hard-pressed to visit him at all. I don’t have a whole lot of people willing to travel down with me and risk being attacked by my son. And as of fairly recently I am single again, so the pool of helpers is now even smaller.

On the first Wednesday, there was a bit of a miracle. After chowing down some Micky D’s, Jonah sprang from the picnic table and declared “walk” – so I jumped up to join him, and 3 staff members followed us at a slight distance. The campus walk we take is a little more than a mile…a beautiful mile, really, past a pond with a fountain spray and lots of wooded areas. As we walked along, I gave Jonah lots of space, keeping pace with him but from about 8 feet to the side. At one point about a third of the way in, Boo started to move toward me. I kept cool and waited. With his right hand holding my cell phone playing music, he threaded the other hand into mine and held it firmly as we walked along. Like magic. He hasn’t held my hand for any length of time in years. He simply doesn’t do this. And yet there we were, hand in hand as if we always walked this way together.

Briana, walking behind us, took this photo. She told me later she was holding her breath, almost in tears. I was too. I was a little in shock and grinning wide.

He held my hand for the whole rest of the walk, and when we said goodbye he offered me his cheek to kiss before he went inside the house.

Driving home, I thought about the strangeness of our relationship, how little we can communicate verbally and how amazing the simple act of holding hands. I thought about happiness – how it comes to us in moments…a fresh-baked cookie, a tiny baby’s smile, a winning poker hand, the full moon on a cool October night.

I thought about how happiness can be just as much the absence of something as the presence. How when you’ve got a headache, happiness looks a lot like not having a headache. How when your child lives away from you largely because of his violence, the absence of aggression becomes a state of joy. In this light and from this frame of mind, anything beyond calm is a bonus – and this day, a jackpot.

I am filled with gratitude for Briana and her staff, and Anderson, and every tiny decision that led us to its doors. Don’t get me wrong; Jonah isn’t a made-for-TV movie success story, and his life is not ideal. When they take the other kids in the house for apple and pumpkin picking, Jonah stays behind. It simply isn’t safe to take him. And though my first reaction to this may be sadness, I have to remember he really doesn’t seem to care. Sometimes I struggle not to impose my own ideas and ideals on his life. I have to pause and understand what happiness looks like for Boo might be very different. What success looks like for him might be to manage his emotions in such a way that nobody gets hurt. And maybe what love looks like to him is taking his mother’s hand on a walk around the Anderson campus.

I still awaken afraid, and the new path I’m forging is frightening too. But I’m trying to approach it like the Buddhists do. I sit in the quiet and allow myself to feel the emotion, however scary or strong. I notice where it arises in my body, the fear or the anger. I can feel it in the set of my jaw and the tightness of my shoulders. I find that when I do this, neither fighting nor ignoring the emotion, it passes. Like a craving for a cigarette or a sweet. It passes, if you let it pass. Everything changes.

I pause and try to examine my feelings with curiosity and compassion. When I get caught in a negative self-narrative, when the panic arises, when regret twists my insides into painful shame, I say to myself “thinking” and come back to the breath. Come back to the now. What we think is what we tell ourselves, and often what we tell ourselves is false. We buy so easily into everything we think, believing it all without question. It’s all just thinking, really.

Those are some of the ideas I’m putting into practice, anyway. I fail about as much as I succeed, but the wisdom I find in Buddhism feels more like truth than anything I’ve encountered yet.

Do I sound like I’m flaking out? So be it. I am a deck of cards old now, past caring if I sound flaky.

Onward ho.

Small wheel turn by the fire and rod, Big wheel turn by the grace of God.
Every time that wheel turn ’round, bound to cover just a little more ground.”

~ The Grateful Dead

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above and beyond

I’m thrilled to tell you all that Briana, Jonah’s wonderful house manager, has won the Anderson Center for Autism’s Above and Beyond award this year, after being nominated by yours truly and two other parents as well!

From Anderson:

Briana Booker has been with Anderson Center for Autism since October 2019. She began her career at ACA as a shift supervisor in the children’s residential program, and was shortly thereafter promoted to the residence manager position. Briana has a long history of working with children and prior to ACA worked in a school setting. She also pursued higher education and received her Master’s in Sports Management with the focus of special education and inclusion in sports. Since joining ACA, Briana has made a tremendous impact in the children’s residential program. She oversees a residence of nine teenaged boys and has truly impacted their quality of life. Her genuine care for the students is recognized by ACA team and family members.  

The Above & Beyond Award is an award given to a deserving ACA team Member, at the annual benefit. Candidates were nominated by ACA parents, who were asked to provide a short narrative describing how the Team Member they are nominating has gone “above & beyond” in the care of their child. This is meant to honor an individual who goes beyond the expectation of optimizing the quality of life for the people we serve, thus making the nomination reviews very important. The winner is a person who, either in a specific situation or on an on-going basis, takes actions that give you that emotional impact-the “they didn’t have to do that, but they did” feeling.

This award has been made possible by a generous donor who seeks ways to highlight the incredible work of all ACA Team members, especially those who go “above & beyond.”

I can’t think of anyone more deserving of this award and $1,000 prize!

Originally Briana was going to be celebrated at a fancy gala in Poughkeepsie later this month, but because of Covid concerns, they’re “re-imagining” the event.

Anderson did, however, contact the people who nominated Briana to record a speech about her. I did my speech via Zoom on Monday, and no matter how many times I practiced it, I wasn’t able to get all the way through it without my voice breaking – and I reckon that’s okay.

I’ll put the text of the speech here after the event is over and I know Briana has had a chance to hear it. For now I’ll just say it feels incredible to know she is in charge of the house where Jonah lives.

Congratulations, Briana!

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