Posted in singing, tagged Guster, thank you, the egg on March 29, 2012| Leave a Comment »
There is a lot to say but this is our annual convention weekend at work and I’ve been too busy. I’ll come back soon enough to blather on, not to worry.
…but I gotta tell you. Last night? Guster at the Egg. Sold-out acoustic show with an amazing violinist, spectacular cellist — and my favorite band closer than I’ve ever seen them before.
I overdressed. I loved every moment.
Front row center.
Bliss.
Posted in Anderson School, autism, behavior, Uncategorized, tagged Knockout Ned, ScareMeNots, white duck on March 26, 2012| 5 Comments »
This past Saturday was okay for a while and then it really wasn’t okay at all. Part of it was my mental state, which went all to hell on Friday. But here are a bunch of cool pictures.
Knockout Ned came along.
Jonah put his harness on to get into the car…
Swinging at the park
Looking at “whiteduck.”
…but then in the car he pulled my hair hard, grabbed and bent my glasses, and kicked me in the head. My mother kept saying “let me get in the back with him.”
I’m not sure if she thought (A) He wouldn’t attack her or (B) She wouldn’t mind it if he did and (C) She certainly wouldn’t be the melodramatic weakling her daughter turns into, crying and sad because she sees her son for 2 hours a week and wants it to be a good 2 hours, a happy 2 hours…
She actually was extremely angry at me for this and not a word was spoken between us on the ride back.
“All I can say,” she declared disgustedly, once we’d arrived home, “is God help Jonah.”
I was pissed at her implication, but I can get behind what she said. I have never done right by her beloved grandson and I never will. This I must accept as her perception, one she has a right to, one I mustn’t do much more with than acknowledge. Thank God I am not so young anymore. I am learning. Slowly…but I am learning when silence, forgiveness, and self-examination are best.
Off to another doctor appointment tomorrow, to the rheumatologist again. Andy’s bringing him up this time.
God help Jonah.
Posted in Uncategorized, tagged Plato on March 25, 2012| 3 Comments »
We can easily forgive a child who is afraid of the dark; the real tragedy of life is when men are afraid of the light.
Posted in autism, behavior, doctor, hospital, Uncategorized, tagged Albany Medical Center South Clinical Campus, eye operation, glaucoma, sleep on March 20, 2012| 4 Comments »
Monday morning, and it was so early. 6am, which meant E & J & Jonah had been on the road since 4, up since, what, 2:30am? 3? J stayed with Jonah, cat-napping in the van. E & I signed paperwork and I gulped coffee. When they brought Boo in we went over to the toys in the children’s area.
He played a little…
… but was mostly very tired. Yawning...
I suited up and held his hand as they wheeled him into the operating room for his exploratory procedure. His eyes grew big and frightened. “Just like when you were born,” I whispered, looking around at all the metal instruments, tables, and lights everywhere. “It’s okay angel. Mommy’s here,” I said. The part where they put the gas mask on your child is the hardest. Jonah struggled, scared, then a little bit of spittle appeared at his lips and he went to sleep. It’s hard not to panic. A nurse kindly ushered me out and I joined E in the cafeteria while J napped in the surgical waiting room.
When Jonah was brought into post-op, they called me in first. Jonah tossed back and forth and I kept repeating “mama’s here, angel. mama’s here,” until his eyes focused on me. I gave him kisses, brushed his damp hair back. Then I saw he was gonna puke so I got one of those puke dishes, guided him up, and held it under his mouth, not a moment too soon. He puked and puked and puked again, before laying back, exhausted. A kind nurse brought him a popsicle, which I assumed was really some flavored electrolyte-replacer, and Jonah ate a few nibbles. I put balm on his chapped lips. After a few minutes he asked for J, then repeatedly, so J and E both came in to see us. J lay right down with Jonah, almost, cradling him. This big, muscular, scarred, toothpick-chewing boxer turns softie with my little broken boy.
Then Jonah pukes all over himself. We replace the robe. I catch the puke in another basin. The room is full of puke trays and washcloths and tissues. Suddenly Jonah says “go baffroom?” and tries to get up, quickly. “K, homie, let’s go,” J said, expertly guiding both Jonah and his IV pole into the restroom. Here I am, all proud that Jonah asked when he needed to go to the bathroom, reveling in that pride, and as I stare at the restroom door I see a red light flash above it, accompanied by an alarm. “They need help,” I called out automatically. Someone opened the bathroom door and went in, and I caught a quick glimpse of the chaos within. Puke and pee and poop, all over the place.
When they finally came out and Jonah came back to the room, dressed in a hospital gown, J excused himself to go wash up. He’d been, um, spray-splattered. He was exhausted, nearly gagging, and went off to clean and go outside to get some air and Jonah’s change of clothes.
This man is probably paid twelve dollars an hour. I might be shooting high on that guess.
When he came back in, he was himself again. “Me and homie on a whole new level now,” he joked, putting his arms around my boy as E figured out all the appointments, coordinating it all.
When we loaded Jonah back in the van, a comfy pillow and blanket set up for him, I watched my boy settle into the soft nest, put his thumb in his mouth, and sigh.
I started crying in gratitude and frustration. It’s not fair that Jonah has to have autism and have operations and other things wrong with him he can’t even understand, and it’s not fair that people like J and E, and all the caregivers — these amazing, wonderful, patient people who literally care for and watch over our children — are paid so little. Why? I am not pointing a finger at my son’s school. It’s like this everywhere. They don’t have the funding? Who decides who makes what kind of money?
For that matter, why can’t they institute a sliding-scale tuition based on the parents’ income, and put that money toward salary hikes? I’d gladly get on board and pay my share. Not all disabled kids are from poor families. So the rich disabled kid gets exactly the same free services as the poor one? It doesn’t seem right. When the kids become adults I can see the equality, but until then I say the parents who are able to should work together to raise the salaries of people we are counting on and grateful for.
Somehow I got on a rant. I really didn’t mean to. Basically his eyes looked good. Jonah’s left eye had high pressure, but that could have been because he didn’t have his eye drops that morning… so they’ll take a measure in the regular office next week, then see what’s what.
They called me today to tell me Jonah had a one-person takedown (a wrap) to keep him under control. I was at my doctor’s office when my cell-phone rang, which was weird. And it’s always a strange conversation, because it’s almost always bad news and so I find myself hoping for news which isn’t that bad. And there isn’t anything to say – they’re required to call a parent when there is a takedown. Okay then, thanks for calling. I’m really sorry. I hope nobody is hurt. (I know someone is hurt, of course). Sometimes I don’t even want to know these things.
Sometimes I want to know nothing at all.
Posted in autism, doctor, grandma, hospital, singing, tagged car ride, eye operation, glaucoma on March 18, 2012| 4 Comments »
I’m tired, and a little sick to my stomach from thinking about the pain my boo will be in – again. After the first eye surgery was the first time in his little life that he’d verbally expressed pain. “Eye hurt!?” he cried, more beg than announcement. Help me. Do something. Why do I feel this way? And we, helpless, holding him, rocking him, offering him pain meds that obviously weren’t working well enough.
Yesterday my mom and I drove down to see Jonah. We cycled through our routine – sandwich, bath, barbecue potato chips, black soda (or sometimes, now, cranberry juice), cookie. Jump jump jump on the bed. Car ride. “Daddy in backseat?” asked Jonah, but I can’t drive a stick and I wasn’t about to put my mom in arm’s reach of my volatile son, so Jonah had to settle for mama. On the ride he sang with me and then stared out the window, sucking his thumb two different ways:
Then we drove to the park, and visited the ducks
and he got to swing on his favorite swing
then on we drove, down to the river, where the train tracks run
Jonah and his dad watching the waves from the wake of a ship
When we were done there Jonah wanted another bath and The Wiggles, so we drove back to the apartment…
And all the while he seemed fine –but then he puked. My mom and I cleaned it up while Andy did the bath part. I am going to talk to the nutritionist ab0ut the possibility of stomach troubles with Jonah. He’s been throwing up kind of a lot.
He did very well for his rheumatologist appointment on Friday. Thank God it was indeed E and J again who drove him up to Albany; I guess it will pretty much always be them. You don’t know what it means to me to have them. I will never forget their kindness, to me and to my boo. Their ability to keep track of everything, keep Jonah busy, keep everything together –it’s all so awesome. I know I say this over and over but I can’t say it enough.
Still, I’m not at all looking forward to tomorrow.
Posted in Anderson School, autism, behavior, placement, Uncategorized, tagged Alas Babylon, CNN, Of Mice and Men, The Awakening, The Bridge to Terabithia, The Giver, The Heart is a Lonely Hunter, The Help on March 18, 2012| 3 Comments »
I have been writing back and forth with several mothers, some who found me through the CNN article, others I’ve known a while, through one path or another.
E has a child in a residential educational facility too — her child has been there 3 years now. We write to one another of how it feels. We hold one another up. Recently, I wrote to her:
I am beginning to understand that there are a lot of us. Who have done this thing. Who feel this way. Who struggle with mixed emotions – first one, then the other…feeling the guilt and the freedom together, a strange mix of relief and grief. This is all just swept under the rug. No one talks about it, acknowledges it, does anything about it. I’ve had enough of that. So many families struggle and are in pain.
I want to try to write a book.
Who wants to read a book when there’s no happy ending? friend E e-mailed me when I suggested this.
I thought about all the books I have loved that did not have what most would consider happy endings: The Heart is a Lonely Hunter. Of Mice and Men. The Bridge to Terabithia. The Awakening. The Giver (maybe; that one’s left open to interpretation). Every Shakespeare tragedy. Alas Babylon. And on and on.
So I wrote back to her: Yes. We can compel them to create one! And she immediately offered me her support and help. Then I thought of the book, The Help – how Skeeter compiled all the stories of the women into a book. Should I do it that way?
I think we need to have a voice. There are a lot of people who need help. Maybe the local autism society can help me figure out how to go about increasing awareness of the ‘behaviorally dangerous’ end of the spectrum. The rest of us.
Maybe they could call us the prism of the spectrum of autism. What should be a clear view through transparent glass, fractured into bits and pieces of what is really there, all the while shooting beams of incredible color in every direction. Thrown and shattered, though, the prism’s really fucking sharp. Sharp like people don’t know. Sharp that would shock them all.
Posted in Anderson School, autism, doctor, The Anderson School for Autism, Uncategorized, tagged Chaucer, Middle English, rainbow, rheumatologist, Shakespeare on March 15, 2012| 2 Comments »
“Thanks to Shakespeare’s indelible dramatization, March 15—also called the Ides of March—is forever linked with the 44 B.C. assassination of Julius Caesar, and with prophecies of doom.” ~ Brian Handwerk
I have to admit I don’t particularly like Shakespeare, unless I get to see it as intended, as an audience member watching very good actors on a stage. Reading Shakespeare for me is like trying to translate something you’ll never quite understand. And we won’t even talk about Chaucer and his bullshit middle English.
But I love to hear my boo talk, no matter how hard to understand or decipher. When he is happy he fairly chirps – sometimes screams and screeches – and laughs until his tummy hurts. My God that child can laugh.
Sometimes he’s just giggling but other times he just cracks himself up, or something strikes him as hilarious, or he just is filled with joy.
Tomorrow please God let it be E and J who come to meet me at Jonah’s appointment with the rheumatologist. I am excited to see Jonah. I hope he wants hugs and kisses. I’ll bring bubbles. Everything will be fine.
There was a beautiful rainbow this morning, and I went in and dragged M outside to see it. He came out and we stood at the end of the driveway at 7:20am and looked and looked.
Posted in autism, The Anderson School for Autism, Uncategorized, Writing, tagged Anton Chekhov, Retisert, the grateful dead, The Wheel on March 12, 2012| 3 Comments »
“The wheel is turning and you can’t slow down,
You can’t let go and you can’t hold on,
You can’t go back and you can’t stand still,
If the thunder don’t get you then the lightning will.”
~ The Wheel by the Grateful Dead
I’ve probably quoted that before in this blog. A funny fact is that I’ve never read my blog straight through from beginning to end. I could be repeating quotes, stories, ideas…hell, all kinds of shit.
Well it appears our 15 minutes of fame are over. Jonah’s been swept off the top ten stories of HLNtv.com by famous people and real news. And here I’d dreamed of some publisher happening upon our story and offering me an advance of $25,000 to edit the blog into a book…but not a one has materialized, thus far. Heh. I did, however, connect with all lots of amazing new people. People just like me. And supportive souls. And adults on the spectrum. We’re all in a magical, leaky, strangely expanding ship – the S.S. Autism.
The whole experience, though, was a jolt of affirmation I really needed. (I thrive on affirmation; it’s damn near Pavlovian).
The thing is someone gave me a chance to tell my story, and I’m grateful for that chance. Thank you, KC.
But the wheel turns, and comes a time for things I don’t want to think about. Jonah’s first visit to a rheumatologist in this area on Friday, and, on Monday, exploratory eye surgery. I pray to God those same two awesome people who drove him up last time, E and J, will be there. With them everything will be okay. It will be okay if Jonah kicks and it will be okay if I burst out sobbing and I don’t have to worry about keeping it together because they will help, they will know what to do and what to say and how to navigate the whole mess. They have compassion and knowledge and heart, these people. They love. Thank God, they love.
Because without them I’d fall apart again. I can’t stand the thought of Jonah scared. In pain.
I remember holding him in my arms for his first eye surgery, when they implanted the Retisert – how he looked at me with this deep, intense fear in his eyes as I placed him on the operating table…how I watched him go limp-that-looks-like-dead as the anesthesia took effect. I kept it together long enough to look the surgeon in the eye and whisper “please help my son.” She held my gaze and promised me, silently, nodding.
I remember closing the door and flattening myself out against the coolness of the wall on the other side. Telling myself to breathe. To trust.
Throughout these last ten years I have entrusted my child to so many people. I am so lucky, so grateful. I trust and I trust. To do anything else is to deliberately envision (create?) a worse reality. At least with trust there is hope.
“You must trust and believe in people or life becomes impossible.” ~ Anton Chekhov
Posted in autism, Uncategorized, Writing, tagged alone, C.S. Lewis, CNN.com, HLNtv.com, Kahlil Gibran, Normal is a Dryer Setting, you are not alone on March 11, 2012| 10 Comments »
“We read to know we are not alone.” ~ C.S. Lewis
Where do I begin? I’ve been away and basically “unplugged” since Thursday morning; M & I went on a 2-day mini-trip to see Guster play with the Colorado Symphony Orchestra in Denver, which was amazing.
It was worth every penny I’d saved up to do it. More about that later, maybe. First, this very cool piece of news…
Two weeks ago, I got an e-mail from the executive director of Turner, asking me if I’d be interested in writing a piece about Jonah (and why I blog about him) for HLNtv.com and its sister site, CNN.com. She had been tipped off about my blog by someone I went to high school with who works for CNN. (Thanks, MM). So I told her I’d think about it OF COURSE and then I started to panic. 500 words and a two-day deadline. What to say? How to encapsulate all we’ve experienced in 500 words?
Here is what I came up with, and I’m humbled and proud (are they mutually exclusive?) to say the story is the #2 top headline on HLNtv.com right now. I can’t find it on CNN yet, so maybe it’s just going to be on the one site. Either way…
Yesterday at school, with no warning, my son Jonah overturned and threw his desk, attacked his teachers, and was ultimately so aggressive he required a two-person takedown (where his caregivers follow trained physical maneuvers to protect both him and them). My son’s a slender, slight boy, but also wiry and strong. He has autism with severe behavioral problems. He’s been potty trained for five months now, and will sometimes utter a sentence/request: “I want juice please?”
On March 7, Jonah turned ten years old.
Jonah’s also a cutie, and a charmer. He loves trains, baths, and the beach, tight hugs and Grandma and chases. Though he can only speak in phrases, he can sing entire songs, in tune and with near-perfect rhythm. He taught himself to swim when he was five and dives deep underwater, surging to the surface over and over again, spitting water in a perfect stream. He even invented his own nomenclature (any kind of cola, for instance, is black soda, and whether it’s a dime, penny, or nickel, to Jonah it’s moneycoin). He dances and runs, shouting his jabberwocky to anyone within earshot. He’s never embarrassed, never ashamed.
And since August 16, 2011, he’s been living an hour and a half away from me at an educational residential facility for individuals with autism.
I used to judge people like me, people who sent their children away.
I don’t judge anyone anymore.
Almost two years ago now, Jonah started to say “swat” and whack people on the arm. We and his school tried everything to mitigate this behavior. It grew worse, however, until he eventually became violent without reason – even during a preferred activity. He grabs and breaks eyeglasses. He hits hard and yanks hair. He scratches and bites. He fights dirty, no holds barred. Eventually Jonah calms down, but it is impossible to say for how long. There is no pattern, or if there is a pattern, none of us can see it.
His father and I tried hard to see it, to find another way. He got the earliest intervention possible; our family doctor knew something was amiss when Jonah was just 8 weeks old. He wasn’t looking at the doctor; he was looking at the lights. “Infants look at faces,” doc told me, smiling, reassuring me we’d keep an eye on him. So by the time he was 19 months old, Jonah received early intervention services. Diagnosed with autism at 22 months, before he turned three he was admitted to a fantastic full-time school for kids with neurological impairments, where he stayed until the residential placement.
I blog about my son because I have to write about him. Normal is a Dryer Setting is not a triumph-over-autism story, and it’s not a wise mother’s guide to life with autism. It’s just an honest account of our crazy, messy lives. And if it comforts one other family – if I can help just one person feel they are not alone – then Jonah’s journey will be worth the telling.
The most difficult thing about writing this article was to pinpoint exactly why I’m blogging about Jonah, and I think that’s the point she really wanted me to drive home. I write about him because I’m a writer. Because it’s therapeutic. And, I realized, I wanted to uncover this “dark side” of autism nobody talks about. Because I know I can’t be the only one. And, maybe most of all, because I don’t want the other ones to feel alone.
I will come back soon. If you have commented or written to me, I promise to get back to you as soon as I can. There are a lot of responses, and I am indeed humbled. Honored. And yes, also proud, because I consider myself a writer above almost all else, and this is so invigoratingly validating.
You must stay drunk on writing so reality cannot destroy you. ~Ray Bradbury
My beautiful Boo: How many lives you have touched? How many people can we help?
Posted in Uncategorized, tagged aggression, Charlie Babbitt, Colorado Symphony Orchestra, glaucoma, Guster, juvenile arthritis, Rainman, Raymond Babbitt on March 7, 2012| 8 Comments »
It is Jonah Russell’s 10th birthday today, and time itself must be bending and twisting and teasing me, because I just can’t wrap my mind around that. I’m off work from noon today until next week. I was going to drive down to see Jonah after I got off work, but I’m recovering from an ugly stomach bug (I didn’t go to work at all Monday) and don’t want to bring it to him (if he didn’t bring it to me). Plus, I don’t want to upset his special day with an unexpected visit – he won’t comprehend why I’m there. They’ll have a pizza and cake party for him tonight — and he even gets a present or two.
We had our own birthday party for him at grandma’s house on Saturday; Andy drove him up and grandma had gotten him balloons, all his favorite foods, and cake with chocolate frosting.
Tomorrow morning M and I are flying to Denver, Colorado to see Guster play with the Colorado Symphony Orchestra. Then back home for two more acoustic shows before (sob) the tour is over. There is a reason my son learned to sing one of their most complicated songs. If you click on –> Keep it Together you can see a You Tube video of him singing it, and in pretty good tune & rhythm, when he was 7 — at a time when his verbal language consisted entirely of two-word phrases. (Sorry to long-time readers who’ve heard me say this a dozen or so times). I guess I brainwashed the child; he was certainly unresistant. And so together we live happily ever after in Gusterland.
I just sent their album Keep It Together, in fact, to the awesome nursing staff who drive him to doctor appointments. It was their idea; they said they’d play it in the van for him. I’m so grateful for the kindness of those who have my son in their care. There is no better gift to me than to nurture, teach, play with, care for, and maybe even love my little Boo.
PAUSE
At that moment the nurse at his school called to tell me Jonah required another two-person takedown today, after it happening twice yesterday. I called his glaucoma doc yesterday to ask if the new meds he’d given him (eye drops) could cause pain or increase aggression but they told me no.
I don’t know if I believe this.
I’m going to ask a good doc I know, though, and look into it some. I don’t want my boy to be in pain, or feeling this compulsion to aggress anymore.
What is it, bunny? What can I do to make this world softer, better, more tolerable for you?
Sometimes I get mad. It’s like that scene from Rainman where Raymond’s younger brother Charlie, played by Tom Cruise, loses it while driving in the desert and Raymond insists on purchasing underwear at a K-Mart 5 or 6 states away. Charlie screeches the car to a halt, throws himself out onto the empty road, and paces wildly, ranting to the desert before returning to his brother, screaming, “You know what I think, Ray? I think this autism is a bunch of shit! Because you can’t tell me that you’re not in there somewhere!”
It’s the whole theme of the movie, and sometimes the theme of the frustration I feel when I can’t communicate with Jonah the way I wish I could. Our bright, amazing, incredible little boy has such violent aggressions – and now juvenile arthritis and glaucoma to boot. It ain’t fair. He’s so brave.
Despite everything, little Boo, you are ten today — and I love you more than the earth and sky.
Baby Jonah, 2002
Happy Birthday, Sweetheart…
The Never Normal 