In five days, on August 16, it will be the fifth anniversary of Jonah’s departure from home.
That’s more than a third of his innocent little life, and I sit here and type this through a stormy mess of emotions.
For some reason that one comment from the other day echoes in my head, over and over. I can’t be bothered to parent. I can’t be bothered to parent. I can say “haters gonna hate” and try to brush it off, but the troll’s words have gotten inside me, wringing my heart, making it pound pound pound in my throat. I kicked my son out. I can’t be bothered to parent. The words are not true and I want to stop hearing them but I don’t know how. I heavily edited my “about” page to more clearly define why we had to send Jonah away, and even as I wrote the new copy I asked myself why I felt the need to justify our actions.
There are many answers to that but the most important answer, I suppose, is to educate. The idea of residential care for individuals with autism is repellent, and I get that. It’s important to know the why of it all, lest they judge not only me but all others in my situation, lest they misunderstand the reality of residential care in the 21st century. Jonah’s school is not an “institution” – it’s a huge, gated, beautiful campus with individual houses and a school building. The caregivers and teachers are phenomenal; they are Jonah’s best friends and companions, advocates and educators. These aren’t justifications. I do not need to justify what was not our choice. We didn’t choose this.
Parents who place a child in residential care aren’t throwing their kid away, I assure you. Because guess what? Even if there were parents who wanted to “throw a child away,” the openings at these places are so valuable there wouldn’t be availability unless the child’s home school district deemed it absolutely necessary. The school district pays for it (in New York State, anyway) and moneycoin is, of course, a huge determining factor.
I just wish I wasn’t so hypersensitive. Or maybe it’s not that. Maybe I’ve slowly developed an invisible shield in order to move forward through life and when trolls knock, the shield is shaken, endangered, a hole poked through, the feelings rushing in, too many too much too painful too real. All the feelings I usually suppress. Ignore. Internalize – until I am, as I’ve described before, bow-string tight with bones gone brittle, shoulders hitched up, breath after breath after breath held…suspended…each new breath a hesitant, unwilling step into more future.
For five years I have lived this bizarre life of mother-not-mothering. For five years I’ve spent most of my energy running away from how it feels never to watch Jonah sleep…how it feels never to be there when he awakens….never to know what it is to raise him. It’s the most helpless kind of helpless. I suppose my mind has created its own protective pathway to enable me to live this way. I imagine my heart’s new primary purpose is to forget all the days we spent together, and what it was to shape his Self, and how I fell in love with his role in my life as my Boo.
I don’t know anyone who is in my situation, with their only child living in a residential school for autism, except Andy. But we don’t talk about it, and so that most helpless kind of helpless is a lonely kind as well. From a singular perspective I attempt to tell our tale, and like as not I speak a language so foreign it’s lost, dismissed, or plain old misunderstood by some people.
And just like that I’m off to find the Animals song, link to it, and look up the lyrics. Is it schizophrenic thinking to feel how those lyrics apply to me? To type the words out in paragraph form because I identify?
I only know this diversion serves as vacation from all the other crap I’m always on about.
“Sometimes I feel a little mad. But don’t you know that no one alive can always be an angel? When things go wrong I seem to be bad, but I’m just a soul whose intentions are good. Sometimes I’m so carefree, with a joy that’s hard to hide, and sometimes it seems that all I have to do is worry, then you’re bound to see my other side. But I’m just a soul whose intentions are good; oh Lord, please don’t let me be misunderstood.”
Why care if I’m misunderstood? Why react so viscerally to the critic or the cruel?
Either way, I’ve been hibernating and closed off. My mental energy is always working to stave off thinking things I don’t want to think. I sleep and I sleep. One day this week I came home from work and took a nap, only waking to eat before going to bed for the night. I’m making up for those sleepless nights with Boo, back when I was a mothering-mother.
Jonah’s school called me today to join a conference call and approve a proposed increase in his dosage of Clozaril, since the drug is helping lessen the frequency of his aggressions but it’s not taking them away. We talked about how he’s refusing to go to school (though they always get him there by 10am or so) and then I asked if anyone there had seen Jonah today. One person had, in the classroom, and she described how he was making a great racket of noise. He also had a behavior management at his residence this morning. They didn’t disclose the severity of the behavior and I didn’t ask.
It’s difficult to remember a time when I did not embrace ignorance.
I guess maybe, well, five years ago.
This is another one of those blog entries I nearly almost always type with fingers slamming-hammer-quick on the keys, stream of conscious unthinking – and then delete. But I think I’ll publish this one.
If I go away for another while, however long, I wanted to tell why.
The Never Normal 
Thinking about you.
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I’ll be awful for you. The person who felt empowered by the Internet to say such stupid and cruel things to you isn’t worth the space in your mind and heart. It’s up to you to find compassion for you both, but for me, that person is emblematic of how we are failing culturally. To condem you as you bare witness to a hard road, is low and terroristic. Deserving of loud scorn and public outing. I feel like being awful and throwing batteries at them even though I know compassion should rule.
So go back to your little hole and go fuck yourself you awful troll.
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Don’t beat yourself up Amy. A person can only handle so much. This person doesn’t understand. I’m going through something similar, I was told the other day that my son can’t attend the after school program this upcoming school year because of the behaviors he had this last school year. They said they would look for a helper but I worry that one won’t be found in time for the new school year. What am I going to do? I work full time. I’ve been told it’s in mine and his best interest to place him. I just don’t know what to do.
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Amy, I don’t know this sider of you as well as I wish I could, but do know I love you, I will always e there for you, and that is just the way it should be. I love you!
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Amy,
I love you❤️
I just wanted you to know that.
I read your blog and I share it with people close to me. We all have a similar response. You are stronger and braver than any of us. And your love for your son knows no boundaries. It is shameful that someone who does not know everything would judge you without having any idea how your heart aches. I miss seeing you, even as infrequently as our visits were, I loved hearing about Jonah. His triumphs are your triumphs and his difficulties were yours too. I saw your pain even through your brave smile. I am not going to say forget the words in that hostile comment because you can’t. But what I will say is when you think about them, think about what a small person it took to write such mean words. Small people with small minds are never worth the trouble. Love and hugs to you and to Jonah.
-Patti
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I hate that this coward got into your head Amy. I’m so goddamn sick of the thugs that troll the internet and feel the need to spew whatever hurtful shit that comes to their mind. You know your own truth. No one can take that.
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If only we were not so vulnerable to cruel things people say and do. You have zero obligation to try and educate the empty, ignorant, mean bully who set out to hurt you. Jonah is your beloved child for whom you continue to move heaven and earth. Your heart beats with his. Please remember that the troll who wrote those hateful things is a complete stranger. A stranger to you and your family, and in the larger sense, a stranger to any shred of common decency. Jonah would not want you to let that stranger send you into a tailspin.
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Amy. Please don’t let those ignorant jerks let you down. Having had the privilege of working with Jonah I know how much you and Andy love him. Your decision to send him to Anderson must have been heart wrenching and my respect for both of you grows every time I read your blog. You are and always will be Jonahs mother. You’re just mothering him a different way now. You are a wonderful person and mother. Please never forget that
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Who knows what makes one person judge another so harshly? Perhaps she is going through something similar and acting out her own insecurities by putting the guilt she feels, on you. Really, we do not know if she is spiteful, cruel or just plain ignorant. She is certainly misguided.
A woman in a writer’s club, once wrote me a vitriolic email telling me I had had such an perfect life, I didn’t know about heartache (her husband had recently left her). This woman only knew me from online chats in the 90s. She wrote me cruel and hateful letters. She did not know I had buried first my father and then my younger brother only recently, had watched my brother and his partner die from AIDS, had coped with redundancy and no money when our 5 children were small, and had “overcome” depression. I am no different to any number of people. I lost my middle sister a while ago and we are now responsible for her son who has Asperger’, as you know. I say this only because she knew none of what had gone before and certainly nothing of what was to come.
She based her findings on few humorous anecdotes I had written about family life. I could forgive her for deducing from these that my life was perfect but she did not look beyond these carefully presented cameos.
Take heart, I have followed your blog for years, from when Boo was singing in front of the mirror in that wonderful video. My nephew is now a thirty-three year old, living on his own with a full time PA keeping an eye on him. He was not like your dear Boo but when my sister and brother-in-law died, he was going through adolescence, despite being in his 20s. His behaviour was far worse then than it had been and far worse than it is now. Now he is a polite and incredibly reasonable human being, even with all his disabilities. He phones us most days and tells us he thinks of us as his second mum and dad. I now have six children it seems.
Once again, that lady would think our lives perfect if she were to see me now. What does she know? What does the woman who wrote her poison on your blog know?
Enough said. Put her from your mind. X
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I am now 60 damn years old, and I am able to distinguish my ass from a hole in the ground around 50% of the time, which I dare say is well above average.
Sometimes I am reminded of something simple that one of my teenage heroes, radio god Jean Shepherd said; “I see myself as an observer.” And so I often remind myself, amidst all the craziness that goes on both internally and externally, I am an observer. Yeah, that’s it! An observer.
I pretend to be all sorts of things so that I might get through the day and not feel like such an insignificant dot. Other days, I might pretend to be a poet, or a punk/rockabilly guy, or the voice of reason. Maybe a neo-hippie.
And I think of Roger Waters of the Floyd, speaking about what “Dark Side of the Moon” was all about, and he said something like, “All of this. It seems to hang together, but something doesn’t sit quite right with me.” (To my big brain and all of those brain juices, “Us and Them” sure does the trick. When I am in a receptive mood, and that mellow sax solo kicks in, It is a little like floating on a cloud in the night sky.)
George Carlin was like that too. He said he had a a front row seat to the circus, and didn’t want to miss a minute of it. The more stuff that blew up, the better. What a show!
(Please note how sophisticated my cultural references are. No Shakespeare or Sartre stored in my rotten brain.)
As far as existential angst, from what I have been able to gather in my cursory reading, it boils down to “try an d keep busy, try not to think about it, and don’t awfulize.”
And in the words of the great Todd Rundgren, and knowing that t doesn’t sound like much with out someone crooning it (or even with someone crooning it), “…there ain’t no cure for what I got, I’ll just have to suffer…”
Despite it all, there is decency in the world, and with all of the horror and beauty, dispensed to we humans in unjust and unequal dollops, I would not want to miss the show for anything.
Hi ho and so it goes.
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As Kurt Vonnegut sometimes wrote, I am stuffed full of more shit than a Christmas goose.
On and on I blather.
Any way, for what it is worth, which is very little, I have the perfect song for your present mental state, which is, “Why must I always Explain” by Van Morrison. It is another one of my go to songs. When I am in a receptive mood, it makes my (metaphorical) spirit soar.
over and out
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Amy,
I’m so glad your blog is active again. I’d been worried about you.
I’m sure by now you’ve gotten over how you felt the day you posted this, but, as a mother embarking on the same journey now for my 8 yr old, I want you to know how I’m framing this for myself: I am sending my son to an out of town boarding school specializing in his disability, bc the local schools are not equipped for him. That’s all. It has nothing to do with my parenting. My kid is miserable at home. He needs a suburban setting, he needs the kind of school and home facilities that are available at a residential school. So…. your kid is in an out of town boarding school! that’s all 🙂
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