Some of the people at the Anderson Center for Autism will email me every so often to check in and see if I have any questions or concerns. More often than not, I’ll answer with just a brief note of appreciation, but sometimes I will ask a question or express a concern.
This past week was one of those times. When one of Jonah’s behavior specialists emailed me, I directed the inquiring behavioral specialist to my broken post, explaining that I’d been depressed about Jonah’s seeming stagnation and asking for glimpses into Jonah’s life and happiness. She emailed me back and asked if I wanted to talk. We scheduled a time, and she called me.
I wonder if every parent she calls must force words past a throat tight from trying not to cry. It seems I am always crying on the phone to the Anderson folk. Hell, I don’t think they’ve ever heard my normal voice. Anyway, we spoke, and she was kind, and said she saw a lot of hope for Jonah. She told me he had, just that day, approached a new student in class who was sitting on a beanbag. Jonah sat right down next to him, smiled, and was calm.
This behavior specialist knew I needed her to tell me something good. And she kept on knowing it. The next day, she sent me this email:
Hi,
I just wanted to send you a quick note.
Jonah went swimming with his classroom peers today! He sat the edge splashing and playing for about 10 minutes before he walked to the deep end and finally jumped/dove in! He swam to the stairs, got out, dove in, again and again!
He was laughing and enjoying himself! Staff said the last few days at school have been really positive!
Best,
R
I felt the excitement of those exclamation marks. Easily I pictured Jonah’s lithe form, diving effortlessly and gliding far under the surface of the water to pop up right at the ladder. I sent R a thank you that could never hope to express how much the email meant to me.
Sometimes I feel envious of the people who get to witness Jonah’s joys firsthand. I get so few glimpses of him that I over-record him when I see him and then watch the short videos over and over, as if to memorize his smiles and laughter. It’s a strange thing to know that a whole group of other people have way, way, more interaction with my son than I do; a myriad of mundane activities are supervised and guided by his Anderson “family,” for the past almost-five-years. But all that time has trained my mind to accept this strange mother-not-mothering existence.
They’ve raised Boo’s dosage of Clozaril by a very little bit, and so maybe that’s the reason for his recent positive days. For all I know, as I type this Jonah is mid-attack, biting and kicking and hitting. But for now, today, I will read R’s email again and stay in that place and those moments, enjoying his time at the pool. It’s a good place to stay; as transient and fleeting as it may be, it happened, and no one can force me to focus my gaze and thoughts elsewhere until I’m good and ready. Even the email in my inbox (the one always from the same person, always to notify me of an incident of aggression) can sit there unopened for as long as I like. I do not have to move on from Jonah’s swimming pool fun and nothing can make me move on from it.
Tomorrow I may be ready once again for the roller coaster. Today I’m sitting on the bench and letting other people ride.
I am so happy for Jonah and for you! May his swimming-pool and beanbag-buddy happiness progress and progress!
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Amy, you are such a superb writer, I think it would help a lot of people if you compiled your posts into a book.
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I couldn’t agree more with Mel. Just as you blog posts have helped other families with children on the spectrum for several years, there are parents who don’t know of your blog who would be helped by finding your experiences in a book. Probably parents whose children won’t be born for a couple of decades. Think about it. Your beautiful expressions of everything being Jonah’s mom entails: angst, angst at needing to place him in a residential facility, hope, hope dashed, depression, joy–all the little joys of Guster CDs, train, etc.–will be balm to other parents pain in book as well as blog form.
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I agree, you are a very good writer and you should write a book. You’re story is so full of love and we need more stories like this in the autism community. I know to well that wanting to stay in a moment of time. I wish everyday my son who will be thirteen could be a perpetual three year old. I choose that age because we didn’t know exactly what was wrong yet and I could handle him with no help. ❤️ Nothing like a mother’s love. Xx
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Love is kicking your kid out at age 9.
Love is bragging that you love your only kid so much you visit him weekly (!).
Sure. Those are signs of love. Not a mom who can’t be bothered to parent and happily exiled her kid to institutional care as a grade schooler.
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Bragging? Happily? How dare you. It ripped our hearts out to send Jonah to residential school. He was *kicked out* of his school and was extremely violent. I would have given anything to keep him with me. He was smashing windows, TVs, beating us up, hurting other children. Next time you want to judge someone, walk a mile in their moccasins first. And learn your facts before you point your righteous finger at someone whose life and pain you can’t even begin to understand.
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This person made no effort to understand what happened and what is going on, just left this shameful comment.
Amy, I am very grateful for your blog, having a developmentally challenged child in my life, although living in a lot easier situation than yours. You are a very talented writer and a very good person. I don’t know you personally and come from a different culture, but your love for your son shines through your writings. I believe that there are many invisible readers who appreciate your blog. Thank you and take care.
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Katie –
You are a fucking bitch. I sincerely hope that your Holidays are shit, that all your hair falls out, and you have stigmata, shingles, and pinkeye simultaneously. I guess someone is forcing you to read this??? You don’t have to, you know – you could just go into the Pediatric ICU at your local hospital and scream at the Parents how much they suck for having their children treated for their diseases. Or you could be a cowardly c&%# and hide behind a keyboard. Bitch.
Fuck off. Silently.
Anastasia
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