Posted in Anderson School, Uncategorized, tagged Winnie the Pooh on August 15, 2011| 2 Comments »
“If ever there is tomorrow when we’re not together, there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think.
But the most important thing is, even if we’re apart.. i’ll always be with you.”
Winnie the Pooh
Posted in Uncategorized on August 14, 2011| 4 Comments »
I can’t talk anymore. If you e-mail, or text, or call, or twitter me and I do not answer, please know it is only because i just can’t. The words have left me.
I’ll borrow words from books or songs or quotes until my own words come back.
I find hope in the darkest of days, and focus in the brightest. I do not judge the universe. ~The Dalai Lama
Posted in autism, placement, The Anderson School for Autism, Uncategorized, Wildwood, tagged Bible, divinity, God, grateful, gratitude, push on August 11, 2011| 4 Comments »
I’m at the point where I just want it to be Tuesday. I want to go, get it over with – to do it instead of dread it. I’m tired of being sapped of life and joy, breath and motivation. It’s starting to feel like I’ve chosen this misery.
Today was Jonah’s last day of school at Wildwood. Thank you so much, Wildwood. No words can express our appreciation that there is such a wonderful school; Jonah was so lucky to be there for 6 years.
I have so much to be grateful for – there are so many people who care. Yesterday I got a package from a business networking guy I know. Inside was a card from him and a beautiful hand-crocheted twilight-blue stole from volunteers at his church. My hands shook as I read his card and the church’s handmade card and message. Feeling something almost like shame, I clutched the stole and cried into it.
Then, a lady I am in contact with only by phone and e-mail sent me a long letter about how her son has autism too – something I’d never known. The letter was full of encouraging, positive sentiments and suggestions for Bible verses for me to read.
My friend H continues to generously offer her pool, and friend K gave me hope – and e-mails me SNL skits to make me laugh. M encourages me with loving words, and today he also e-mailed me a verse: Jeremiah 29:11: “For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.” My aunt texts me messages telling me how much she loves me, to call her anytime, that she is praying for me. New online friends and past acquaintances, family, friends, everyone envelops me in love and light.
Seems like Divinity is yelling at me from all directions: Have faith! Have hope! I’ll take care of everything. There is no denying the push of the divine – it’s all around me. I’m grateful for it. Every morning I wake and cry, my throat so tight I am almost gasping to breathe –and as the day progresses I become calmer. I can smell the rose and blow out the candle, and there are long moments of peace.
The push of the divine is gentle but firm, like a tight hug. I am hugging back, hanging on.
A few more pictures:
happy boo
chillin’ in the pool
water boy
…baby boo,
Mama loves you.
Posted in autism, behavior, Uncategorized, tagged Guster, hope, pictures of Jonah, The New Underground, time bomb on August 8, 2011| 6 Comments »
“Welcome…
You’re under control
And buried like a mole
A thousand feet below
Waiting
With all that we’ve got
Our reputation’s shot
A ninety-story fall
No one here can make a sound
We’re all ghosts in this town
We are standing in the trenches
Of the new underground
Pipe down
Stay under control
It’s getting so absurd
Soon everything will turn
It’s that time
To see the Sun
There’ll be a crack
And a day will come
Maybe then we’ll be the ones;
Never can be sure
The shot heard ’round the world…”
Posted in Anderson School, autism, behavior, placement, Uncategorized, tagged ennui, going nuts, gratitude, Novocain, numb on August 8, 2011| 2 Comments »
I’ve gone through a time bending worm-hole. It was six weeks away, and now it is a week and a day. I will pour myself into work, twice as much as usual, for I’m taking next week off to do this thing and then process it best I can without having to think too much.
I keep calling it this thing like it doesn’t deserve recognition in any other terms. My God, I’m going nuts. Off the charts. Just mailed the direct care workers at Jonah’s residence letters and pictures and my blog address, cell phone number – as much information as I could muster about my precious, barely-verbal boo.
Also I sent thank yous – expressions of gratitude for what they do and deal with every day, for choosing to help these children and face injury and shit smears and God knows what else – all for less money than they deserve, undoubtedly – for what they do is priceless.
I hope this week and next week fly by. I hope I can go far inside my head, into a Novocain-place, into numbness and ennui, even when I must be awake to work & think. As oxymoronic as it sounds, I want the foundation of my days to be a state of sleep from which I can wake later, later. Some other time. Some other place.
I don’t want to live through this.
Posted in autism, behavior, haircut, swimming, Uncategorized, tagged baby chick head, buzz cut, headshot, Paul Simon, pictures, poetry, safe hands, Spirit Voices, swimming, video on August 5, 2011| 1 Comment »
Jonah had a relatively good day in school yesterday, which was very cool to read in his log book – he’d gone roller skating and loved it. He loves yoga too, and his scooter they pull him around on with a weighted-vest. My sensory-craver boy…
Then D came over and Andy and she and I brought Jonah and the clippers outside, to the outlet halfway down the driveway – and between the three of us, we buzz-cut his hair. D did the actual buzzing while Andy held Jonah and I sat on the driveway holding Jonah’s legs between Andy’s legs so he couldn’t kick or thrash. He was hopping mad, of course. It looked like a circus act, with hair flying everywhere and Jonah twisting around. Good thing the neighbors weren’t out. Afterward we had a near-bald boy who immediately ran inside to look at himself in his bedroom door mirror and run his little hand through its baby-chick-head softness. I went outside to the driveway where all boo’s hair was scattered and picked up a lock. Maybe it is silly, but I want it to hold when he is gone and I can’t be with him.
Of course he gave D and I plenty of trouble on the way to H’s house and pool. Safe hands? he’d ask D, wanting her to hold both his hands. She’d turn and hold his hands, then he’d try to pick his nose or swipe stray hairs from his face, so she’d let go, only to have him beg for safe hands again. Over and over. He kicked the back of D’s seat and head-rest, hit the windows HARD, flat-palmed, and screamed his loudest, his someone-is-murdering-me screams, laughing and giggling afterward.
What? D and I would ask each other, unable to talk above the noise. No wonder I am going for a hearing test this afternoon. Between Jonah, my concussion, and all those loud 70s/80s/90s concerts I saw (like KISS, Rush, Def Leppard, Jane’s Addiction, and every other band where I’ve sat too close to the speakers on purpose), my ears are suffering. I always did like my music loud.
Then Jonah started to beg for hot dog. Hotdogwithmustard? he asked repeatedly. Hotdogwithmustard? My plan was to stop at Stewart’s on the way to H’s, but then I called H and she said she still had some from the last time I brought some over, so she prepared one in her microwave, God bless her, so it would be ready upon King Jonah’s’ arrival.
Finally Jonah got both his naked swim and his hot dog and all was right with the world for a few moments, though the entirety of our visit was maybe 15 minutes, tops. ADHD? D and I were half-jokingly recalling the blessed days (which we used to complain about, believe it or not) when he would perseverate on just one thing at a time. Let’s ride the escalator 75 times! Let’s stare into the street sewer for a half an hour! Let’s go on the merry-go-round 8 times in a row!
Going on the assumption that most folk prefer pictures over poetry, I’ll make sure to come back later and post some. I might even upgrade my account so I can post video. I’m taking pictures and video of Jonah with ever-increasing frequency, as if I can capture and visit him whenever I want.
“The candlelight flickers
The falcon calls
A lime-green lizard scuttles down the cabin wall
And all of these spirit voices
Sing rainwater, seawater
River water, holy water
Wrap this child in mercy…”
~ Spirit Voices by Paul Simon
Posted in Uncategorized on August 4, 2011| Leave a Comment »
I am human,
keen with need.
From birth I discern an infant ability,
a higher order of helplessness:
my just-hatched hands redden & reach
for milk, warmth, a return to the womb
The open palm of desire,
it wants everything…
trucks & blocks, the training wheels gone;
park place, boardwalk – mine – with two hotels on each;
a year’s supply of bomb pops & bazooka joe.
wants everything
golden fairground frying dough, silver stapled stars,
the complete collected works of Everywriter;
watered gardens gifting greens, a son, albeit silent…
It wants soil soft as summer
tenderness.
a yielding bouquet, the feeling in my center
up against another
up against the wall
the kind of time that gets
away
so at the last I want
the strength to let you go
a month, a week, another day.
~ Italicized lines are lyrics from the song Further to Fly by Paul Simon
Posted in autism, behavior, The Anderson School for Autism, Uncategorized, Wildwood, tagged buzz cut, Dalai Lama, defense mechanism, doomsday clock, Matthew 6:26, Sgt. Pepper's Lonely Hearts Club Band, social stories, the Beatles on August 4, 2011| 5 Comments »
In preparation for Jonah’s new chapter in life we are (hopefully successfully) going to give him a buzz cut tonight. Sitter/cousin D is coming over to help Andy and me- and with the 3 of us we should be able to get ‘er done. Then, if it clears up and is nice later, D and I will take him to friend H’s to swim.
I am starting to think ahead, beyond the time when Jonah goes away. Before this I was simply thinking of it as a doomsday clock – that everything would come to an end on August 16th – that there was no point in thinking beyond this day or its inevitable heartbreak (and relief?).
My fantastic therapist, Dr. Alex, mentioned that I maybe should make a (real or metaphorical) social story for ME. I’ve made one for Jonah and something like one to send to his care workers, but one for ME might help me prepare emotionally – to help me not block out, ignore, or go numb about all of this, which are the defense mechanisms I have been using.
Jonah has been awful at school. Where usually he would be at camp during summer school, this year he has been disallowed (and, unfortunately, rightfully so) because of his behaviors. I’m so happy the Anderson School has such a big, nice pool so he can swim. At Wildwood he has been what they euphemistically call “smearing” almost every day. YUCK. Then they have to shower him and clean all the shit off him, the walls, themselves – and probably endure scratches, bites, and kicks in the process. The dedication of these direct-care workers amazes me.
It would be one thing if they were making the money they deserve, but the money just isn’t there. I wish they could have a capital campaign earmarked specifically to raise salaries of these incredible individuals. I am so grateful for them I want to fall at their feet and sob out my thanks, in my usual over-the-top style. Instead I will make them gift bags and pray they’ll know, somewhere in their hearts, how much they (and Wildwood) have meant to us and to all the children who need them. What a wonderful school.
Here’s Jonah learning emotions, a year or two ago, with his speech teacher, L. In an earlier post I put up a picture of “excited face.” Here is “mad face” :
If Anderson is anything like Wildwood I will be so relieved.
I have received ever-increasing support from everywhere – people e-mailing me, leaving comments here – people who don’t even know me, or who knew me from my childhood. People I’ve met both virtually and personally who’ve been through this or are going through it…we’re like Sgt. Jonah’s broken hopeful hearts club band. I am not alone. I am not alone. It is my mantra and I cling to it like a proverbial rope you climb to get up and back over the cliff.
I yearn for Gina, for she was my sister-in-spirit. I yearn for siblings, for I have none. But I don’t want to yearn. I don’t want to worry. When I don’t want to worry I think of this Bible verse:
“Look at the birds of the air; your heavenly father feeds them. Are you not much more valuable than they? Matthew 6:26
Stay focused, Amy. Have faith. Stay busy, stay optimistic, stay positive.
And don’t forget to breathe. When I want to remember to breathe I think of HH the Dalai Lama:
Practice for the New Millennium by the Dalai Lama
1. Spend 5 minutes at the beginning of each day remembering we all want the same things (to be happy and be loved) and we are all connected to one another.
2. Spend 5 minutes breathing in, cherishing yourself; and, breathing out cherishing others. If you think about people you have difficulty cherishing, extend your cherishing to them anyway.
3. During the day, extend that attitude to everyone you meet. Practice cherishing the “simplest” person (clerks, attendants, etc) or people you dislike.
4. Continue this practice no matter what happens or what anyone does to you.
These thoughts are very simple, inspiring and helpful. The practice of cherishing can be taken very deeply if done wordlessly, allowing yourself to feel the love and appreciation that already exists in your heart.
I’m trying; I’m learning. I’m grateful.
I just hurt.
Posted in autism, behavior, swimming, The Anderson School for Autism, Uncategorized, tagged Buddhism, flaky, guitar, Laura Ingalls Wilder, Les Miserable, Mansfield, MO, Spanish, War and Peace, Willie Wonka, Willie Wonka and the Chocolate Factory, yoga on July 27, 2011| 6 Comments »
There’s no earthly way of knowing… which direction we are going…” ~ Willie Wonka
Not only don’t I know which direction we are going, but I don’t even know now where I am. I sleep as early and as much as possible – greedily falling into the cushion-y darkness where everything turns OFF for long, glorious hours. I wake confused, then teary, and I gulp down the pills that help me through the day. I’m just not hungry lately either. It’s as if I got to an anxiety/fear point so high I smashed through its glass roof (Willie Wonka style, speaking of the great confectioner) and now I’m flying around grasping at different ideas, completely ungrounded, definitely dazed, and evidently, flaking out as well.
All these thoughts. I decided I ‘m going to learn Spanish. I want to visit Mansfield, MO, home of my beloved heroine, Laura Ingalls Wilder. I’m going to read books even as an English major I’d never dared attempt: Les Miserable and War and Peace. I’ll learn to play guitar. Write a novel, maybe even out of this blog. Visit my relatives, send them all care packages. Volunteer to read to kids at the library. Walk dogs at the humane society. Do yoga. Learn to paint. Anything, everything. Something so I’m not nobody doing nothing.
Sometimes I have these grandiose plans to change the world, at least my world and the people in and around it, making positive deposits in the great big bank of karma.
But still I play out scenarios of the day we drop off our son, over and over, with different circumstances and outcomes each time…except he is always gone at the end. In the scenarios we always have to go, we always drive away. He is always, always gone, and he will be gone, and he will be gone soon. No wonder I am meditating on impermanence. I can’t really comprehend any of it.
Andy and I met with a mediator and we have workbooks to fill in, just like we did at the church when we were planning to marry. Everything is cyclic. We will wait until Jonah is at his new school and then we will re-convene, workbooks completed, bringing yet another thing to its conclusion.
My friend H (bless her) invited M and me and Jonah to her pool again tomorrow, thank you thank you thank you little H. To her it may not be much but to us it is everything. Yesterday M and I had to drive Jonah around the entire time we had him; there was simply nowhere we could go. It poured rain and Jonah didn’t want music. I got him singing at one point but then he started his repetitive requesting-phase:
Wannatakeabath? Wannatakeabath? Wannatakeabath? Bye Bye M. Wannatakeabath? Daddy? Wannatakeabath? Bye Bye M. Daddy? Daddy? Grandma? Swim-pool? Swim-pool? Wannatakeabath? Wannatakeabath? Wannatakeabath? Wannatakeabath? (Insert BLOOD-CURDLING SCREAM instantly followed by giggling laughter). WannaseeJack? WannaseeJack?
And I curse myself for gritting my teeth and wanting to shout SHUT UP because soon enough I’ll wish I could hear his little voice, no matter what it was saying or shouting or screaming.
Oh, what a weird place in time & space this is.
“For the rowers keep on rowing,
And they’re certainly not showing
Any signs that they are slowing…”
~Willie Wonka
Posted in autism, Uncategorized, tagged breathe, fingerprints, now, signature, smell the rose blow out the candle, Thich Nhat Hanh on July 27, 2011| 3 Comments »
The Never Normal 