“Jonah lives at a residential educational facility for kids with autism” is how I say it.
Innocent conversation-starter questions at networking events or out in this bad, bad world*: So Jonah is 9? Is he in 3rd or4th grade?
I almost always tell the truth, and it sounds like a carefully phrased script constructed to confuse with alliterative, technical-sounding words that hopefully distract the listener while I try to usher the conversation elsewhere.
Jonah’s at a residential educational facility for kids with autism.
I’m not trying to be politically correct here, though of course it must seem it. It’s just that any alternative phrasing feels awful. “Jonah lives an hour and a half away from me, cared for by strangers I have no choice but to trust because his kind of autism comes with behaviors so severe it was unsafe for everybody to keep him at home.”
What else could I say? “My son’s at a school for kids with autism,” I guess would be okay, but it lacks that alliterative technical-sounding distraction technique and, instead, seems to always invite more questions.
Luckily most folks then let me take us on to “so you went to school for marketing?”
And then, later, I allow myself to wonder what Jonah would be like if he were in 3rd or 4th grade, just a regular kid at a regular school. Would he still love the water, and celery, and tight hugs and car rides? Would he be good at different things? Would we go places and do things together? Bake and hike and play games? I get the feeling I’m over-romanticizing regular kids. You get what you get. And everybody gets their share of shit. It’s just sometimes I feel like mine’s smeared all over me.
There are times I don’t talk about because I’m ashamed of them, the times when I forget. It used to be for a minute, then an hour, then a day. What I forget is how bad it was, how scared I was all the time, what despair and dread we lived with day after day after God-awful day. I forget, and then I feel relief, and I tell myself that Jonah is well taken care of and in the best possible place, with his father just 5 minutes away.
I forget, and I am relieved, and I am ashamed.
If I were a born-to-be-a-mother-mother, one of those special people some folks say I am, I’d have found a way to keep him home with me, protected and loved. No matter what I had to do, no matter how expensive. No matter if I had to get a second job to pay for a 24-hour personal aide, an autism service dog, a kick-ass nutritionist. A behavior analyst – Harvard valedictorian, class of 1988. Some Superdoc who will fix all his violent behavior.
Not everyone should have kids. It shouldn’t be an expected order of things: High school. Then college. Job. Engagement. Marriage. Buy house. Have 2.5 kids. Work until you retire. Wish you had something to do, wish you still felt important to the world. I may not understand it fully but I feel it coming, all this being pushed off the planet by the next generation and the generation after that and the generation after that. Everything starts to confuse you and technology feels exponentially rapid now.
So maybe I shouldn’t have had kids. The truth is I just really, really wanted some unborn child to have Andy for his/her father. Unfortunately I was also selfish enough not to realize it probably shouldn’t have been with someone like me.
I don’t mean to sound whiny or crazy. UGH. Should I post this mess?
The Never Normal 
I go through the roller coaster of emotions involved in what to say to people and the shame as well. I’m always second guessing what else could have been done to avoid residential placement. In the end though, it comes down to the fact that we were all living in a crisis mode day in and day out, not knowing whether we would make it through without having a nervous breakdown or worse. Basically, I realize that he’s in a good place and we’re happy with the arrangement overall. If other people I come in contact with don’t like it, or think I could have done more, or am a bad mother, then tough shit. They need to walk a mile in my shoes and get back to me.
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Hi Amy –
Have been reading your blog for a while after discovering it in the Parent Pages and I just want to say how cool it is to read. It inspires and generates courage that is as real as Gusters’ and/or Ani Difranco’s music. When my three year old daughter is yelling at her thirteen year old brother to “do his fucking homework”, your altruisms help keep me grounded.
In the interest of not being just an interloper and maybenot contributing to all your hard work, Hello from Brian B. – your old neighbor in HOLLYWOOD. (Cypess Dr.) I appreciate your sharing Jonah’s journey. I am in touch with a few people from your cllass @ shaker el; married Tammy Arnold 20 years ago, She’s the best.
Thank you for helping to keep all your blog audience afloat. There are a few more classmates from Shaker el thet we see, Cindy Powell, Kelly Grady (RIP), Tracy sussman, margiotta’s (once every tweny years), mcguinnes’s. From everything that I have read, you are doing an excellent job rising to the challenges that you’ve been given and I just wanted to say Hi – keep the faith…
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I know you know trauma when you see it, but it’s tough to diagnose yourself. Everything you describe is perfectly reasonable. You are entitled to feel relief. You have found the very best place for Jonah at this point in his life.
Of course you will second guess yourself, that’s part of getting through this, and that super-mom fantasy is more about you than about Jonah. Everything you imagine putting in place for him would leave him “managed” but isolated. Instead, he has community– and none of the chaos, fear, increasing violence, and uncertainty that he and all of those who cherish him experienced in various ways.
A sense of shame is a common (and totally unfair) element of coming to terms with a painful decision – – there are theories that it is part of finding your way to a “revised” identity [Helen M. Lynde]. You actually have far more reason to take credit for moving heaven and earth to find a safe and constructive environment for your son.
These are still very early days.
All the best,
Marilyn
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Post all your messes. They make me seem more sane. Joking! Love you!
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Amy, I truly hope you take my inane posts as I mean them to be. I want to put a smile on your face…even if it is over something totally foolish…maybe like putting chocolates down your pajamas so no one could see them, but your skinny butt wouldn’t hold them in?
I know the pain you have. I witnessed it. I want to take your pain, let you feel it for a while, then put it aside for a bit so you can smile and eat forbidden candy again. You mean the world to me…literally!
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