Marvin the Martian, plans to destroy the earth usurped (from the old Bugs Bunny cartoons)
Resentment: Def. A feeling of indignant displeasure or persistent ill will at something regarded as a wrong, insult, or injury – real or imagined.
Andy has brought Jonah to three post-op doctor appointments this week. God knows what would happen if he did not live where he does and have the job(s) he does. E and J have been unable to bring him to his last 4 appointments. What does the school do if there is a child who needs an eye surgery and doesn’t have the transportation to get there?
The laser surgery was medically successful, at least initially, but I had to take the whole day off Monday because everything happened excruciatingly slowly.
This video shows Jonah, gowned up and ready to go, stuck in a room Does he like Dora? the nurse kindly asked and we said yes and we said sure and we said thank you when all we wanted was to get going. Andy is standing between Jonah and me as Jonah walked his circles in the small space of the room.
Five minutes after this Jonah had a major flip out, throwing himself on the floor in the hallway, kicking, screaming, pulling hair, biting. Nobody came out to help us.
Eventually we got him back to the room and calm.
The operation itself was quick. Jonah got sick afterwards and kept wanting to itch his eye. so I used a tissue to gently press on the eye, and I kissed it soundly, over and over. Kiss eye? Kiss eye? Yes, Boo. Kiss eye. Of course kiss eye.
It was more difficult than usual to send him back to school, an hour and a half away from me, where I see him so infrequently and have so little control over what happens to him. I have to trust. One of the check-in people on eye operation day noted that Jonah was at a residential facility. She mentioned that her daughter was autistic and how she would never, ever trust anyone to take her precious baby away from her. “I don’t trust nobody with my baby,” she declared. It was as if she had slapped me in the face. Who says that to someone whose kid is already in a residential facility? What do you know about why we did it? I wanted to yell.
Jonah & Andy, walking the halls before the room where you gown up.
– – –
And so I crawl along, filled with dread, with grief and terror for this world, with my heart broken for those at Sandy Hook in CT. I read all the intelligent arguments about mental illness, parenting, gun control, and violent games/TV, and I find no answer in my heart — and that, maybe, is what frightens me most. My mental state becomes fragile when I am confronted by humanity at its worst.
Which did not help when very recently I was the target of verbal anger, delivered in front of others and with a ramped-up rage that left me in disbelief, filled with embarrassment, and completely stunned. Despite a nonverbal apology later for the “confusion,” (not the behavior), I think maybe too many people enjoy railroading over people like me, who don’t fight back. One witness, upon seeing my face fall, told me coldly to “suck it up.” Maybe I really don’t belong in society, such as it is, because that kind of behavior seems so foreign to me that I have no response but tears. It will pass, it always does, I regain the strength and something restores my faith and I keep on going.
Yet there is a lot that’s wrong with all the people in this world. With our priorities and with our ignorance and with our anger. All of us. There are a lot of things one can say about me but I will say this for myself: I may be meek, but I am kind, and I don’t take advantage of people’s weaknesses or vulnerabilities, and I care about how other people feel, and I have never treated anyone the way I was treated today. So perhaps people like me really shall inherit the earth, like the Bible says. Watch out then, bullies, because things are gonna get a whole lot more mellow. (Quite rightly).
If I were a Buddhist all of this would play out in my head and heart quite differently. I would be thankful to this person for their challenge to my ability to be compassionate and understanding. I would consider them my teacher. I would not only forgive instantly but also revere the perpetrator – very similar to Jesus’ “turn the other cheek.” That’s some serious shit to truly take on, though, which makes me admire earnestly practicing Buddhists and Christians all the more. Perhaps I should just up and go to Plum Village for a while. I need to pound the lessons into my head.
Of course this whole story – every little bit of it – is nothing compared to what has happened and continues to happen in Newtown, CT. Burials, burials. An entire community with post-traumatic stress disorder. Pain-filled awakenings from nightmare hours of darkness. God only knows the horror. God help all the mourning people. I just can’t muster much joy in Christmas this year; I have had the wind knocked out of me and am only a stranger, miles away. But I can pretend, and the pretending will become real. Smiling begets smiling. Breathing allows for release.
Hope.
At least I am still able to crawl along. To let go of the resentment. Breathe, breathe. Let it go… Feel gratitude.
I’m a Weeble, you see. I wobble, but I don’t fall down.
Weebles just, well, rock on.
Posted in Anderson School, autism, doctor, glaucoma, hospital, Uncategorized | Tagged 12-14-12, Albany Medical Center South Clinical Campus, Buddhism, CT, Newtown, Sandy Hook | 6 Comments »
For he comes, the human child
To the waters and the wild
With a faery, hand in hand
For the world’s more full of weeping than he can understand.
The Stolen Child by W.B. Yeats
Posted in Uncategorized | Tagged CT, Newtown, Sandy Hook School | 2 Comments »
“Rich man can ride and the hobo he can drown
But I thank the Lord for the people I have found;
I thank the Lord for the people I have found
While Mona Lisas and Mad Hatters
Sons of bankers, sons of lawyers
Turn around and say good morning to the night
For unless they see the sky…
But they can’t and that is why
They know not if it’s dark outside or light.”
~ Mona Lisas and Mad Hatters, Elton John
I have not felt like writing.
I’ve been playing online poker and sending out (mostly Christmas) cards,
playing with stickers & markers like a kid
listening to (new to me) old music from the early 70s
(Genesis and Elton John, their really old stuff…)
I’ve been staying up way later than I used to
and trying to unravel the sticky red tape of Medicaid
and trusting it shall be unraveled, soon & successfully.
I’ve been dreaming of the Pacific sun over the Big Island
and not thinking about Jonah’s (4th) eye operation on Monday.
Perhaps some pictures. I’m just so very tired.
He looks like a pissed off mini-Beatle in this photo. And, more and more I think, in pictures you can tell his left eye looks so different from his right eye. Evidently he has just had a haircut, and S, one of his direct care workers, says he is muy bonito. (She speaks Spanish and if I had kept up with my Rosetta Stone, so would I). I can’t wait to see him on Saturday. I couldn’t go last week because I had the kind of migraine where you puke 8 or 10 times and lay there in the bed in between, twisting and pushing your face into the pillow to seek comfort, cushion, relief. Anything, anything. I was so desperate. I’d never hold up under torture.
Jonah is high-fiving E, one of the kick-ass caregivers; she keeps track of all his records and she advocates, smiles, hugs, and is generally awesome. Plus she and J drive him to and from many doctor appointments. Here they are at Jonah’s recent glaucoma doc.
I took this (nothing really happens) video sitting next to Jonah in the backseat of car ride. You can see how all around his lips are chapped (we took care of that in a few days with some Burt’s Bees) and he is rhythmically rocking to some Top-40 song Andy has on the radio she said disdainfully. I like when he gets all smiley and turns toward the window. By the end he reminds me of Carl from Slingblade.
Manzo likes to be inside boxes and bags. The bag is appropriately from the World Wildlife Foundation. <– Just as I typed that M opened the door to let Jack out and Manzo scooted out as well, jumping the fence into our next door neighbor’s yard immediately. I am trying not to panic because I know we can’t catch him if he doesn’t want to be caught, and it’s cold out so he should come back in.
Damn it though.
Posted in autism, doctor, glaucoma, hospital, iritis, Uncategorized, uveitis | 2 Comments »
Hooray! Thank God and all my lucky stars and saints, my kitty ‘Manzo’s been found!
I’m at the dentist this morning and my cell phone rings. Luckily P, the hygienist, hadn’t started cleaning and polishing my teeth yet, so I answered it and a man told me he found my cat (inside a house for sale two doors away. I didn’t even know my neighbors had moved out yet). They must’ve moved out Monday, and somehow Manzo snuck in and got locked inside the house. When the guy found Manzo, the cat was huddled under a carpet on the back porch. Turns out that guy might buy the house, and I gave him the reward money even though he didn’t want it. I hope he does move in – I want a good neighbor.
I can’t stop petting and kissing and loving my cat. YAY! Jack was happy to see his cat brother, too.
Jonah is going to see his primary care doctor tomorrow, who can give him a good look-over and maybe suggest something other than Humira, so when we next bring Jonah to the pediatric rheumatologist, we can maybe try that. And I am pretty sure I can get my 2k back from Medicaid.
And even though I had kind of a crappy week at work, next week should be great. (My weeks kind of start Wednesday at 3:01pm and end at 2:59pm the following Wednesday). If that doesn’t make sense, not to worry. It’s not an important part of the story. What matters most is I feel a whole lot better today, and re-energized. Thank you all for prayers and positive thoughts and wishes. You are the change this world needs.
Manzo says purrrrrrrrrrrrrrrr
Posted in Uncategorized | 7 Comments »
I guess I’m one of those people
who have a difficult time this time of year,
when everything is dark
and the days fly quickly
from one night sky to the next
in a foggy blur of countdown-to-Christmas,
the December rush and push and prepare
and pressure at work to do very well
at a very hard time of year to do well at all.
None of it feels okay to me right now.
I’m panicky, quivering.
I feel beaten down.
It’s almost too difficult to get into the whole Jonah mess but then, after all, this is a blog about him. Last Thursday the school called to tell us he fell off a chair and had a few scratches on his back — but when we picked him up on Saturday he had a huge bruise on his buttock and a smaller one on his lower back. I guess the nursing department felt they didn’t need to inform us because it was all part of the same incident they’d already told us about, but nobody at his house told us anything either, so we were shocked when he wanted bath and we saw him all black-and-blue. I would post a picture but for fear of some sick pedophile looking at it for kicks. As it turned out, the house caregivers thought the nursing department had told us. They were sincerely concerned and, in fact, the nurse had just checked on Jonah Saturday morning before we got there.
Earlier in the week we’d learned Jonah has been without his Humira because of a delivery problem, and that they’d called his doctor who said it was okay if he missed a dose. Turns out the “delivery problem” was that Caremark, the pharmacy folks who deliver his meds, would not release the medication until a $2,077 copay was remitted. After taking a half a day off on Thursday to make calls and figure this out, I managed to get the name of his new Dutchess County Medicaid worker, but had to call about 7 times before I got her. Usually the phone is busy, and sometimes it rings and rings until a recording says, simply and harshly, “you cannot leave messages in this mailbox.” Then I had to fax shit over to her.
Then I had to call my primary health insurance company and his school, sift through all the red tape and bullshit, and still have no answer as to why, with primary and secondary insurance, I owe a co-pay of $2,077 for every dose of Humira my disabled son receives. So, faced with no immediately forthcoming solution, I used my credit card, called Caremark and paid them to get my son his medication the very next day. Merry Christmas! And all that money is just a copay, and only for whatever they consider one refill. Supposedly there are grants you can apply for, and maybe I can see if Medicaid will reimburse me, but at this rate I can afford about one more refill before no more Humira. I’m working on figuring it out. Maybe he doesn’t really need it so much; there has to be some other generic medication. I should call my pharmacist cousin.
(Wait’ll I tell you about the non-refundable vacation I booked in November. Another post).
And to top it all off, my sweet kitty Almanzo is gone. We haven’t seen him since Monday morning. I put posters up around our neighborhood (Beacon Avenue near Berkshire Drive, Russell Road, State Office Campus) offering a $100 reward. Then I put an ad in the Times Union in print and online, and on the Mohawk Hudson Humane Society website. Damn it, I miss him. He was just getting so he’d sleep with Jack and lie in my lap so I could pet him.
We adopted him from the Mohawk Hudson Humane Society in (I think) July of 2011. He was 4 then and they didn’t know what his life had been like. I wanted to keep him an indoor cat but it was crystal clear he was an outdoor cat; he has always longed (incessantly and loudly) to go outside. I’d rather have a happy cat than a miserable one, even if it means he is gone from me. He was a hunter — had such fun chasing and catching critters, mice and such (though I always hated when he got a bird).
I’m rambling, my fingers shaking over the keyboard. I need a little blog break, maybe for a while.
Manzo, please come home.
Posted in Uncategorized | Tagged Albany, Almanzo, Humira, lost cat, Medicaid | 4 Comments »
Raymond: 97X. Bam! The future of rock ‘n’ roll.
97X. Bam! The future of rock ‘n’ roll.
97X, Bam! The future of rock ‘n’ roll.
~ Raymond Babbitt in Rainman
Oh, my sweet, precious little boy. What a wonder you are!
This is the third Thanksgiving I’ve described in this blog. Hard to believe.. The first was awful – so awful, in fact, that just days later I would check myself into a mental health facility, the second was fun (and was paired with two Guster shows, so how could one go wrong?), and yesterday, Thanksgiving 2012, which was easy-wonderful.
Andy was nice enough to drive Jonah up to Grandma’s house, and I met them there. My boo came crashing through the front door, shrieking with happiness. We ate turkey sandwiches; Jonah ate one and a hot dog as well, and chips, and bacon, and “white ice cream.” He asked for train and we drove him there even though we knew Thanksgiving trains are few and far between. All the way there my mom sat in the backseat with Jonah, but he kept asking mama in the backseat? And my mother told him, “yes, sweetheart, as soon as we stop for the train.” It made me feel good; usually he wants grandma in the backseat.
He also wanted music, and daddy turned up this station that he and Jonah enjoy: 92.3 FLY. After one of the songs they announced the call station with snazzy-jingle-music and the deep voice and all. Jonah immediately parroted it, really well, too, if I don’t say so myself. 92.3 – WFLY! 92.3 – WFLY! 92.3 – WFLY! None of us could help laughing, which only encouraged him. Giggling, he kept at it for a while, just like Rainman.
So there was no train, but I got to sit in the backseat with my Boo – and instead of telling me move (which means get as far away from me as possible and do not even look at me), he asked for hugs. Over and over again he wanted hugs. Bear hugs, he even said. And so I reveled in this, moved close to him, wrapped my arms around him, and hugged tight, raining kisses on his Beatle-length hair. More bear hug? he pleaded, looking up at me sweetly. Yes, Boo, I replied, hugging him closer, tighter, until it felt like we were one. Oh thank you, I said silently. Thank you.
And this week I get to see him again – tomorrow, which I hope will be as beautiful as today – and Jonah as lovey.
daddy-hugs
Before Andy and Jonah left, they came inside to get their share of a Thanksgiving dinner my mom had made just for the few of us. So she had a bag with all their food in it, and Jonah and Andy were saying goodbye, when Jonah opened the freezer, snagged the rest of the bacon, put it into the bag of food, then looked up at us all as if to say “k, let’s go.” Of course grandma let him take the bacon.
Mom and I had coffee afterwards and laughed at Boo’s adorable little ways. We both had tears behind our laughter, but they were mostly good, happy, thankful tears.
We’ve plenty to give thanks for, that’s for sure.
Posted in behavior, echolalia, grandma, language, Uncategorized | Tagged autism, bear hugs, Thanksgiving | 2 Comments »
“Not flesh or my flesh, nor bone of my bone
Yet still, miraculously, my own.
Never forget for a single minute
You didn’t grow under my heart, but in it.”
~ Fleur Conkling Heylinger
I’m preparing to go to Brooklyn this weekend to exhibit and maybe speak at an adoption conference. I’m adopted, and I like to work with prospective adoptive parents. I have a soft spot in my heart for them and love doing everything I can to help them complete their families through adoption.
Jonah is my biological child and the only blood relative I know, which is weird. I do like when people say he looks like me. And yet it never mattered that I didn’t look like my parents’ families (they really all do have similarities in their faces and mannerisms – nature, not nurture).
Anyway, I’m looking forward to the conference, but also I’m more than a little hesitant to be going to New York City. The City freaks me out under normal circumstances, but I’m frightened it’ll be eerie, too – a wounded place.
I am there to smile and bring hope to the people who file in to the conference, most of them brand new at this whole adoption thing. Overwhelmed and emotional, they need a friendly face and maybe some tissue. You cannot pry but you need to encourage. I love meeting the people, meeting their frightened eyes with my reassuring ones: don’t worry; your child will find you, I want to tell them.
So I won’t see Boo this weekend and in fact not until Thanksgiving, when we’ll probably bring turkey sandwiches down to Andy’s, and Jonah will beg for bath and grocery store, oblivious of the holiday. I miss him already, and would gladly trade a big hug for a small slap.
My dad and I are going out to lunch tomorrow. He’ll ask me how work has been going and I’ll tell him about the adoption conference. I’ll bring along The Story of Amy, a red-cloth-covered cling page 70s photo album turned into a book by my parents. My mother wrote in careful script-like print, using cutouts of congratulations on your new baby cards as illustrations:
The Story of Amy
Once upon a time there was a lady and a man named Mr. and Mrs. Wink. They had been married for quite a few years. They were happy and still young, but there was one thing wrong. They had no baby although they always longed for one to share their home.
One day Mr. and Mrs. Wink said to each other, ”Let’s adopt a baby and bring her up as our very own.” So the next day they called up the lady who helps people to adopt babies and babies to adopt parents, and said to her, “Miss Brown, we wish so much to find a baby who would like to have a mommy and a daddy and could be our very own. Will you help us find one?”
Miss Brown said, “It will not be be easy. Many people wish to adopt babies, and you may have to wait a long time. But come see me and let’s talk it over.”
So Mr. & Mrs. Wink went to see Miss Brown and told her how much they wanted to adopt a baby.
Miss Brown asked them many questions and said, “I will do my best to find just the right baby for you. But remember, you may have to wait a long time.”
After a little while Miss Brown came to visit Mrs. Wink. She was very nice, but quite particular. She asked more questions, and went all over their home. She seemed specially interested in knowing where the baby would sleep and play. She found that the Winks had a lovely home and lots of room for a baby.
Many more months went by and Mr. and Mrs. Wink kept saying to each other, “I wonder when our baby will be coming.” Mrs. Wink would call up Miss Brown and say, “We are still waiting for our baby. Please don’t forget about us.” Miss Brown would say, “Be patient. It takes time to find just the right baby.”
Several months later Miss Brown came to visit the Winks again. Surely this means our baby will be coming soon!
One day Mrs. Wink got a phone call from Miss Brown. “I have good news for you! We have a baby girl for you to see. Can you come tomorrow?” Mrs. Wink was so happy and excited. She called Mr. Wink at the office and told him the news.
The next day Mr. and Mrs. Wink went to see Miss Brown. First she told them about the baby: “She is six months old with the biggest eyes you’ve ever seen and lots of brown hair,” she said, “now go into the next room and see her.
Mr. & Mrs. Wink both held the baby girl. “This baby is our chosen baby. She’s just perfect!”
Miss Brown said, “Well go home and get some baby clothes and some baby food and come back tomorrow and you can take your little girl home.”
That night Mr. and Mrs. Wink went shopping for baby clothes and food. They were so excited they didn’t sleep all night. The next day, they went to pick up their baby girl. “What shall we name her,” they said. Mr. Wink said, “How about Amy? I think that’s a pretty name.” Mrs. Wink thought for a while then she said yes, “Amy means beloved. I think Amy Marie would be a pretty name for our little girl.”
After dinner the Wink’s house was a very busy place. Everyone came to see little Amy. All her grandmothers, grandfathers, aunts, uncles, and cousins were there to see her. And of course they just loved her!
After everyone left, mommy and daddy got Amy ready for bed. When they put her in her crib they both said “this is the happiest day of our lives; we have a beautiful little girl. At last we are a family!
The End
My parents read my story to me so often, I suppose, that I always knew I was adopted. And I was very lucky; it was a good family. I’ve always been lucky, always been blessed. I certainly didn’t always realize it or appreciate it, but now I know it. I know it every day. It helps a lot to know it. When I’m grateful I’m happy.
People deal too much with the negative, with what is wrong.
Why not try and see positive things, to just touch those things and make them bloom?
‘Manzo knows this!
Posted in autism, Uncategorized | Tagged adoption, APC Conference, Brooklyn | 9 Comments »
Usually I know how to calm him at first, to get him used to being with me. Singing softly. Today I try Guster and The Beatles but he gives me a no to both of those. I’ve Been Working on the Railroad it is. We take turns with the lyrics, me singing a line or two, then pointing to him, he picking up tune & rhythm without breaking tempo.
It’s a complicated song as children’s sings go, but he prefers complicated songs with distinct bridges into all-new musical directions, and back again. Keep it Together by Guster, for example. I should turn him on to Bohemian Rhapsody or A Day in the Life.
He asks me for hug and so I slide over to him, and he wants kisses on his head, and I wrap my arms around him gladly, taking advantage of this somewhat rare physical closeness I get with my son. More kisses? he pleads, giggling. I kiss him all over the top of his sweet little head and then lean back to face him for a kiss on the lips.
SLAP his hand flashes out and catches my upper cheek and eye. SMACK comes the other hand, fingers now curled to grab and pull at me, though my glasses are off and I’ve tucked my hair under a hood, so contact is minimal.
I caught his wrists after that, and we got him to the apartment okay.
I forgot my camera; this picture is from another week.
When I got home, I did laundry and dishes and raked my whole front lawn, stripping off layers of sweaters and zip-up fleeces until I was wearing just a t-shirt. I moved in hard sweeping lifts, leaves clinging to the rake, my clothes, my gloves. The sun and the cool and the wind-less day made for ideal raking conditions. I felt strong: alive and focused. I shoved the leaves down inside the bags with one leg, my foot stomping hard, compacting – my nose filled with the almost-decayed smell of fallen leaves.
I’m just a hair shy of the kind of OCD that would have me picking up stray leaves one by one from the lawn.
It felt so good to work fast and hard, to know what to do to complete a task, to literally bag it all up, and to have a different result than when I started. Anything I can do that brings with it a logical beginning, middle, and end is good. These blog entries are vital. Making a difference somewhere, somehow, any way I can. Even if it’s just clearing a scattered gathering of autumn leaves. The leaves aren’t going to pretend to go willingly into the bag and then suddenly stage a coup and escape, attacking me with their sharp pointy stems and edges.
Work is important. Tasks are vital.
Otherwise I would go mad. Mad madder maddest.
“Keep it together;
Can we keep it together?
We’re singing a new song now…
and everything starts today.”
~ Guster
My friend D send me a coloring book in the mail, and I’m about to go have brunch with two other wonderful friends, after which I will take a walk in the sunshine to the park. Maybe make some nature art with what’s left of the colorful leaves. Or break out the crayons and play in my new coloring book. Play UNO with M’s kids. Play with my dog, pet my cat, send out some cards, maybe a package. Perhaps I’ll even call someone I haven’t talked to in a while.
Just to pass the time away.
Posted in autism, behavior, singing, Uncategorized | Tagged A Day in the Life, autumn leaves, Bohemian Rhapsody, Guster, Keep it Together, Queen, the Beatles | Leave a Comment »
Dear Boo,
Mama is so sorry, sweet angel, but it looks like you are going to need another eye surgery, and soon. See, the one they would normally do requires the patient to avoid touching the eye for two weeks, and we know you can’t do that, and we can’t explain it to you, so we have to try something else, and these laser eye surgeries are the something else.
This might not even be the last surgery. The surgeries aren’t helping so far, and what we’re trying to do is make sure you can continue to see.
People with autism are usually visual learners, and you seem to be one as well. Thinking in Pictures by Temple Grandin explains this somewhat, and if you could read it I would give it to you and see if you agree. I don’t really even know if you can read. They talk about the sight words you know, but even illiterate people know what the STOP sign says. I don’t know if it matters that you can read, even. Sometimes I wish you understood more and sometimes I am grateful for your ignorance and innocence.
Have the eye appointments and surgeries become part of your normal? I guess they must be, by now. You tip your head back for the eye drops like an expert and read the eye chart like a brave little man. You are as patient and tolerant of the neurotypical people around you as you can be. I have no idea how difficult it is, to be surrounded by people who do not understand you.
I’m so sorry, sweetheart. Mama and daddy are doing their best to make sure you are not in pain, that you have eyes that are healthy, a strong little body, and a calm, peaceful, happy mind. I’m sorry you don’t have many of those things and I’m sorry there isn’t anything I can do but trust and pray and hope. I can research, and listen to my instincts. Hold you close for as long as you’ll let me. Breathe you in.
You amaze me, Jonah Russell. Daddy and I will do the best we can for you, for as long as we live.
Mama promises.
Posted in autism, behavior, doctor, hospital, iritis, language, placement, The Anderson School for Autism, uveitis | Tagged glaucoma, laser eye surgery | 3 Comments »
The Never Normal 