Saturday, 8:07pm
Today feels like two or three days smashed together – one of those days when by 8pm, the morning feels like it was yesterday or the day before that. Time is strange. I slept in til 8:30am or so, a beautiful thing. I ate a delicious breakfast M made for us. I went to a hair salon and got my hair cut, highlighted, and colored auburn. The I met D at the house at 3pm to visit with Jonah, help her watch him, and give Andy a break.
Now I’m home again; it’s 8pm. And that breakfast seems like three days ago.
I can’t imagine what life is like for Andy. I’m sure it could be worse, but at times it feels like Jonah is thoroughly and utterly of the highest maintenance there is. Andy left when D & I got there, and while this is not exactly the order in which our four-hour chunk of time unfolded, it’s pretty close:
We start off with a car ride, and I tell you if it wasn’t so un-green and crazy-expensive to do it, I swear I’d drive that kid around forever, because strapped in and listening to his favorite Guster album, the one he calls Cranberry Guster, he is mostly just fine. While it is true he’ll hit the window, kick the console, and throw anything in the backseat at you, he mostly is calm, sucking his thumb, occasionally singing or humming, and generally pretty happy. Once it is more spring-summery we can take him to the Rensselaerville Falls or wherever else he wants. The trick, though, is to never be too far from the house so he can change his mind on a dime, request grandma or home, and be within a reasonable distance of said request – preferably on a familiar path so he can direct us this way or that way as well.
I understand it might seem like we spoil Jonah, but at this point we’re just trying to survive. When the Tasmanian Devil is in your care, you’ve got to mitigate his crazed behavior any which way you can.
After our car ride we go into the house because it is icky outside, windy with cold drizzle.
Brownie meal? he requests. Okay, boo, mama will make a brownie meal. Funny thing is he rarely eats the damn brownie. D follows him around the house while I microwave the meal.
But before I’ve even presented him with the meal, he’s requesting something else: Green leafy? So we put a plate of salad greens and blue cheese next to his brownie meal and he requests white soda and D pours some because he’s peed on the potty but he’s not sitting down to eat – he’s running from one room to the next, alternately requesting daddy and downstairs and brown car (my car) and bath.
Of course there are small minutes, tiny pockets of time when we engage him with black camwa or a bouncy ball, but mostly it’s near-constant ever-changing activity with a side of trouble brewing.
There are two baths during our stay and very little eaten of his dinner. There is plenty of agitation and swatting. D needed to hold him in his room because he lost it and tried to attack both of us. She’s trained in the holds because she teaches and works with kids like Jonah, thank God, and she’s smart and sharp and unafraid. Both D and I are constantly on guard, and if Jonah approaches we almost always wince and/or tighten, backing away, expecting him to aggress.
I’m no help while she’s calming him so I go in the kitchen and do what I usually do when something like this happens: I clean. I can hear Jonah kicking the floor and I ask D if she’s okay and she answers yes almost cheerfully so I wet-swiffer the kitchen with the force and efficiency of Rosie the Robot. I go into “let’s clean something” mode because (a) Jonah has usually tipped over chairs, tables, food, and whatever else he can reach to throw, and (b) it makes me feel like I can do something useful and gives me a sense of control in a situation that is completely out of control.
But Jonah’s new weapon comes with its own ammunition: shit. At one point when I am putting away the swiffer and D has him on time in his room, he grunts hard until he is purple and then bolts from the room, his hands brown with poop. He runs down into the far corner of the basement, making brown prints on various parts of the wall on the way, and then bangs on the wall with both palms before running back upstairs to tip over a kitchen chair, break an end table, and return to his room to try and attack us again.
We put him back in the tub; D gets him his green soap while I go through the house cleaning the walls and upending the table and chair. After calming down and having some more quiet time in his room, he runs back out, requesting brown car and wanna–go-see-train and daddy.
And so on.
The kicker is D tells me Jonah’s much better this weekend than last, when I was at the convention all weekend.
Meanwhile, and I know I invite this because I blog publicly, I’m hearing suggestions from everyone who e-mails me. Try this. Take him here. You have to (fill in the blank). Sometimes the comments and suggestions are diametrically opposed. I appreciate this little supportive community following my crazy-ass life more than you know, and I listen and hear you all. Trust me, we’re looking into everything and doing all we can within the realms of possibility. We are going to make mistakes and we are going to fuck things up sometimes. But we are trying hard to make things better for our son and I’m just here to tell the story.
I have to again conclude by telling you that Andy is bearing the lion’s share of all of this with remarkable aplomb. I am grateful for his fathering and nurturing our boy…for keeping him safe and well fed and as happy as possible…for taking him on endless rides in his little red wagon and in the red car and to grandma’s…for getting him ready for school and on the bus every morning and off it every day…for enduring scratches, bites, kicks, head-butts, sleepless nights, and loneliness. I tell you I could not do it. I know this with a certainty that feels like shame.
I love my son with all my heart but I could not do it.
Hi Amy.
I’ve been reading for months, do not know why I have not commented until now. I do not know how you have survived this, or are surviving it, and have no advice to offer you; I certainly would not be coping if I were in your place. I cannot even think of any decent platitudes to offer you, except are you still at your old address, or rather, if I sent some music to that address, would it find you? I really want to reconnect. No pressure on you in that statement, of course. I send love.
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Yes I can get mail at that address, sweet Car-o-line, and thank you so much for being out there. I feel your cyber-hug half a world away.
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My love is with you and Jonah and Andy, whose praises as a Super Father are surely being sung by angels, as you endure the time until Jonah’s education at Tradewinds begins. Any word from Tradewinds as to when the spot for Jonah will open?
Amy, I am begging you to not feel shame because you cannot physically take care of Jonah alone like Andy can and every day like Andy does. Each of us has our strengths. You are such a strong writer and are providing financially for Jonah and Andy because of your writing and managerial skills. You are a slender woman, and your slight build precludes your ability to carry a nine-year-old boy to a time-out, let alone one whose enraged kicking, screaming, scratching and biting gives him the strength of several.
I believe with all my heart that everything we experience has a purpose and that our Higher Selves have contracted to have those experiences for our spiritual growth. (The concept of a father god in the sky who uses us like puppets is not a part of my understanding.) I do not pretend to understand or be able to guess at what Jonah’s soul is learning, how he is benefitting through the dis-ease we call autism with its pervasive aggression. Likewise, I don’t begin to understand how your soul and Andy’s are growing through your agreement to parent Jonah. I do know that Jonah is affording you both the opportunity to love with all your hearts a little boy whose dis-ease often tests your love at its outermost limits.
Take from my understanding of our being Spirit choosing to have embodied human experiences what helps you, and discard the rest. Or discard all of it. This spiritual outlook has enabled me to grow from the hard experiences of my own life, though I’ve never had such a hard experience as you and Andy and the son you love so much.
Hang in there, Amy and Andy. Help is on the way.
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What Channah said… 🙂
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I do not know what to say about your feelings of shame.
I would like to reassure you that that these feelings are normal and that you are also being too hard on yourself.
I would like to tell you that you should not feel shame, but I know that would be impossible.
Shame lives in that place where there is a gap between what we wish we could do and what we can do. It lives in the space between what our reality brings us and what the world out there tells us should be our reality. Your family is not “The Cleavers”- neither is mine. You have been dealt an unfair hand, as have Andy and Jonah. It is ok right now to just be hanging on and making it through the next day- there is no shame in that!
Psychiatrist Judith Lewis Herman concludes that, “Shame is an acutely self-conscious state in which the self is ‘split,’ imagining the self in the eyes of the other; by contrast, in guilt the self is unified.”
On top of all of this, you are sharing your experiences in a way that might give others a greater understanding of the heart-breaking experiences that can come in the world of parenting an atypical child. For someone who is experiencing a struggle similar to you, someone who may not have the writing ability and the guts to post their greatest fears- for that person- you may be the lifeline that allows them to realize that they are not alone in this.
You are amazing!
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Amy,
I found your blog while looking for information on Autism. I have back read since November 2010 up to this month, all in three days. (I have a VERY boring job.) My daughter has ADHD and I thought I had it hard. The kicking and screaming, scratching, biting and inexplicable barn yard animal sounds. The inability to reason with my child and wondering how she’s going to survive kindergarten, let alone the next twelve years of school. The guessing games of meds and wondering how long this one will last before she becomes immune to it and I have to search for another. Sitting in countless doctor’s offices listening to them drone on about discipline, being “pro-active”, and how my daughter is “just strong willed”. For an instant I couldn’t imagine how you and Andy have survived, how you’ve had to deal with things that no one that has a Non-Autistic child can even fathom (including myself). Then it came to me just as it always has with my ADHD, “strong willed” six year old, Jonah is your life. It’s this unexplainable, invisible push that makes you keep going. Even when you want to just sit on your butt and give up, there’s something in the back of your head that keeps pushing you. When you feel like you’ve taken the last step you possibly can and that you can’t take much more, you somehow manage the strength to last just another hour. That invisible push is love and I can feel it oozing out of your blogs and your pictures. Thanks for reminding me that my struggles are nothing in comparison to yours and that if you can push, so can I.
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