Posted in Uncategorized on March 5, 2013| Leave a Comment »
Hope in reality is the worst of all evils because it prolongs the torments of man.
~ Friedrich Nietzsche
Too much too much. Sliding down the slope, my boy a foot ahead of me and I can’t catch him. No one can. My feet were in the sand in Hawai’i and now my head is in the sand here. But I can still hear what they say and I can still feel the hope slipping away again. Hope does prolong the torment.
But what else is there?
Tonight I will try to tell more story with less cryptic rambling.
Posted in autism, behavior, grandma, haircut, swimming, Uncategorized, tagged dolphin, Hawaii, Kona Coast, sea turtle, swimming, whale on February 24, 2013| 5 Comments »
Yesterday’s visit with Jonah was surreal. I guess I’m still jet-lagged and I felt like a dullard, all in a fog and very tired. But Jonah was a good boy, calm and smiley. He got his haircut but it looks like all they cut was the front.
still a ragamuffin boy
I gave Jonah lots and lots of mamalove, kissing his hand and his head and his face, giggling with him, hugging him tight. Andy picked him up for visits 5 days in a row, I think, this past week, because Jonah had no school and he was being a very sweet boy. Naturally, Jonah will ask for his daddy to help him do a lot of things now – daddy give bath? Boo is truly a lucky boy to have such a wonderful father.
To come back from paradise to grey skies and this cold Northeast is harder than I’d imagined. Had I no responsibilities, I would short-sell my home and possessions and move – do not pass go – to the Kona coast of the Big Island.
Where we stayed
But I can’t, and I wouldn’t leave my Boo, and I can only hope to visit again. Hawai’i has a whole different feel – mellow, smiling people and breathtaking beauty everywhere. I took more than a thousand pictures. The black lava rock is mineral-rich and yields growth of palm and grasses. It is not as expensive as people say. The tourist places are, of course, but we found delightful markets where we could buy snacks and drinks, and even a tiny eatery where you can get a full breakfast for $5. I met more people than I imagined who now live there but were former tourists who felt Hawai’i’s pull to be irresistable. I understood.
The island sang to me; it got inside my soul. Although I’ve traveled a good piece of this world, no other place has felt this way to me.
No road rage, honking, “us vs. them,” anger, rushing, or stress…and what seems to be a healthy mutual respect between visitors and locals. And my God, the sunsets framed by palm trees. Sapphire waters. Pineapple, mango, apple-bananas, macadamia nuts. Mongoose and dolphins, whales and sea turtles. White, black, and mixed-sand beaches. Weather that never varies from its 75-82 degree breezy perfection. We never saw a drop of rain, though if you travel to other parts of the island there is rain aplenty. It is not crowded at all – I’ve seen crowds 100 times the size at Cape Cod and Ocean City. If you can do it, go. Go! Boo would have loved it; I wish it was in any way possible to bring him. I am going to get that child to the ocean this summer.
Here are a few pictures, of the 1,273 or so that I took!
Buddha Point at the Hilton Waikoloa Village was the perfect place to watch the remarkable sunsets
hangin’ loose with a lovely hula dancer
Even though jonah is an expert swimmer, I can’t even go under water without plugging my nose!!!
Whales…
…and sea turtles…
…and dolphins…
…oh my!
and the view from our balcony (lanai) one sunset
Posted in Uncategorized, tagged Captain Nemo, Finding Nemo, flight cancelation, Hawaii, no man, no one, travel interruptions, Twenty Thousand Leagues Under the Sea, vacation, Winter Storm Nemo on February 8, 2013| 2 Comments »
~ from Finding Nemo
Actually, says LiveScience.com, Nemo isn’t meant to refer to “Finding Nemo.” Bryan Norcross, a TWC meteorologist who helped conceive the storm-naming last year, told the New York Times, “Nemo is Latin for “no one” or “no man.” It also refers to Captain Nemo, the Jules Verne character from “Twenty Thousand Leagues Under the Sea.”
So here’s Winter Storm Nemo, and our cancelled Saturday a.m. flight has been rescheduled for early morning Monday. I guess even if our area and its runways were cleared up by tomorrow, planes everywhere are grounded and they’ve got to get today’s stranded travelers out first.
Our new schedule gets us to our airport in Hawaii almost exactly 2 days after we were scheduled to go. I was all anxious, pissed, and freaked out for a while; I spent hours on the phone on hold (and, eventually talking to) the airline, before finally, today, booking another flight. We’d discussed taking all manner of trains and other flights (if there were any, and there weren’t) and even renting a car and driving to our next leg of the flight, but they all turned out to be ridiculously expensive and full of hours of time and hassle. In fact our second leg of the flight was cancelled as well, so we would have done it all for naught.
Then we realized: It’s not like we have to be in Hawaii for a wedding, or a funeral, or a graduation. Nobody is there waiting for us, and nobody will be angry if we’re late.
And so, strangely enough, (but really not so much for my life) this has turned out to be not so bad at all.
And so I sit out the pretty storm of sifting snow. I’ll go with my mom to see Boo on Sunday, and immerse myself in a vacation which has already commenced, whether it be on a beach of sand or snow.
My timing turned out to be impeccable!
Dory: This is the Ocean, silly, we’re not the only two in here!
Posted in Uncategorized, tagged aloha, Don Ho, Hawaii, Noreen Ruth Wink, The Charleston on February 7, 2013| 6 Comments »
Noreen Ruth Wink
She was a strong-willed lady, my grandmother, and she loved Boo dearly.
She died on October 30th, 2009.
When I am in Hawaii I will smile, thinking of her doing the Charleston at a Don Ho concert.
Aloha, for now.
Posted in autism, grandma, haircut, singing, Uncategorized, tagged Alton Brown, Fox News, Guster, laughter on February 2, 2013| 6 Comments »
“There is love, there is peace in this world.
So take it back; say it’s not what you thought
Grab a hold, take these melodies
with your hands, write a song to sing…
Isn’t such a bad, bad world!”
~ Guster, Bad Bad World
What a wonderful visit with Boo today. Lately he doesn’t want grandma to come with us to transfer station (our weekly recycling destination) so my mom stays at Andy’s apartment and watches Fox News. But just like last time, just like she said, he knew exactly what was for lunch. You could have given me a year and I would have never figured out there was a pattern, even one as simple as every other week. My mom even brought Jonah a surprise – potato chips and dip.
He was in heaven.
“chips n dips?”
He wanted mama to help him at bath time, and it was fun to watch him splashing around all goofy and happy. Kiss hand? was again an oft-repeated request, and we sang his new favorite song, which is actually an old favorite song my mom taught him years ago. We sing it to the tune of “London Bridge:”
Jooooo—na Russ is Grandma’s boy, grandma’s boy, grandma’s boy!
Jooooo—na Russ is Grandma’s boy, yes oh yes he i—is…
The care workers at his house know the song, as Jonah has taught it to them.
shaggy hair kid
with his lovey grandma
My mother really wants them to cut his hair. It think it’s cute all bushy and long on top, so I don’t push them to cut it.
Sorry, ma.
Jonah, leaning into grandma
And so it must be confessed that Jonah is a grandma’s boy. She’ll get to see him on her birthday, which I imagine will be her favorite present.
I feel a lot of love in my life right now. Thank you all for every time you express it toward me, or Boo, or Andy, or any of us. I’m putting it out there, too, consciously, engaging only in emotions which carry me forward along the river running through the world, which isn’t such a bad, bad world after all. I’m in a card-and-care package-sending-mood, and I’ve been doing things like writing letters to the people (and the bosses of the people) I encounter in the world who are awesome, who have gone above and beyond, whether they have helped me negotiate Jonah’s Medicaid system or just been really kind and friendly to me at the grocery store. I know I’d like it if someone wrote a letter of praise to my boss about me. I hope they all get raises. Perchance to dream…
When the terrible things happen, like the standoff in Alabama with that 5-year-old boy in the bunker with the Vietnam vet, I try to combat the awfulness with goodness, however I can foster it. If I don’t, I lose faith in humanity too easily, too frequently. I become hypnotized by all the anger…by the illusion that any of us is an other to be bullied, manipulated, hated, dismissed, captured, or even killed.
Boo restores my faith in humanity. It happens every Saturday when I walk into his house and he runs into my arms. It happens every time he re-directs himself without an intervention…every time he asks for hug from daddy and I see the beauty in the way they embrace…every time he laughs with his silly, uninhibited, pure joy.
I got some good video of his laughter today toward the end of this 40 second video – and a lot of his turning in circles:
I love how the video starts out with my mother admonishing him for something: That’s not funny… and then at the end how he comes right at me: more hug?
“Laughing brains are more absorbent.”
~ Alton Brown
I like to think Jonah’s brain is a laughing brain.
Posted in autism, behavior, swimming, Uncategorized, tagged Comcast Center, Dispatch, Guster, Hawaii, Humira, MA, Mansfield, Waikoloa on January 29, 2013| 8 Comments »
I don’t know if this is a surprising fact or not, but I’ve never read my blog all the way through. But sometimes I read old entries, especially when they show up on my “top posts” list – partly, I guess, because I wonder how or why certain entries ended up there. And partly to see how often I say the same shit, or whether or not I’ve ever given a blog post the same title twice. And partly to document events & things I will otherwise flush down the memory toilet. And for a bunch of other reasons.
One thing I realized is I start stories and then don’t finish them. Like the whole Humira saga, when I had to pay more than two thousand dollars out of pocket for Jonah’s medicine and then fought through miles of red tape for weeks to get reimbursed – and even then only with the help of a few incredibly kind, kick-ass professionals. I never re-visited that story. Maybe I just forget to re-visit things…0r even mention them in the first place. So today for you I have a list of stuff I’m pretty sure I never talked much about. Some are opinions. Some are confessions. Some are boring. All are true.
1. I got reimbursed in full for Jonah’s $2k Humira refill.
2. In ten days, for ten days, I am going on vacation to Waikoloa, Hawaii. (Yes, my house is being watched).
3. I have been living from Guster show to Guster show for a few years now; this truth became evident when I realized I immediately purchase tickets the moment they are available, each and every time I get a tour announcement e-mail from them. Just bought tickets for yet another show; they’re playing near Boston with Dispatch. Someday Jonah will come with us. I hope so anyway. (They’ll have a summer tour on top of this and I’ll buy tickets to at least one show on that tour, too, the moment they are made available to me).
Saturday June 8th
Mansfield, MA @ Comcast Center w/ Dispatch
$42 – All Ages – 6PM
Ticket Presale (January 28th @ 12PM, use code “CIRCLES”) | Info & Facebook RSVP
4. More and more often I find myself wanting to find ways for Jonah to swim. He is so happy in the water. There is a hotel near my house that offers an indoor swim club, and there is always the Center for the Disability Services, though their pool is literally 90-something degrees and necessarily full of chlorine. Maybe Andy can help me find a place down near where they live where we could bring him.
5. I secretly (well, obviously not so secretly) love that Jonah sucks his thumb. He does not flap or rock, but he does walk in circles, and he loves to suck his thumb. I even love the way he sucks his thumb (watch the end of yesterday’s post‘s 19 second video). Maybe it’s because I was a thumb-sucker too.
6. Sometimes I feel happy that I have more freedom now that Jonah doesn’t live with me.
7. Sometimes I feel guilty for feeling happy for feeling free.
Posted in Uncategorized, tagged Beethoven, Pablo Neruda, Rainman, The Godfather, The Ode to Joy, XVII (I do not love you...) on January 27, 2013| 2 Comments »
freude schöner götterfunken = joy, beautiful spark of the gods
Oh, the joy of an incredible day with my Boo. And I learned a thing or two. I’ll commence in telling you (says Dr. Seuss).
My mother can be exceptionally discerning. She started to notice that Jonah, when we first pick him up, greets her by declaring what there is for lunch. I’m not saying Jonah is psychic; it’s not like there are 100 items on the menu. But it is interesting nonetheless because she makes tuna sandwiches one week and turkey the next, in a routine from which she does not vary.
Still, when she declared to me yesterday that Jonah tells her the right kind of sandwich on the right week, I doubted her. “You watch,” she said. “Today he’ll say tuna.” And sure enough, when we picked him up yesterday, the first words out of his mouth were “tune-fish samwich?”
I realize how this may not seem like an accomplishment worth mentioning but I thought it was incredibly cool. He remembers things very well. He knows where he is in the world at all times, even when you think he’s not paying any attention. He’s no Rainman, but he does have a few strange, fascinating “splinter skills.” (There are reports of individuals with an incongruous repertoire of abilities: apparently general cognitive impairment coupled with outstanding performance in specific areas, such as music, drawing, calculation, and memory).
Two or so years ago he started to utter the alphabet backwards, fast. Who can do that?
And I’m not sure his swimming abilities are a splinter skill too but nature (God?) made him completely at home in (and under) the water, happily Pisces, a true fish who is unfortunately out of water most of the time. If I had the money I’d buy us a private tropical place and hire a team of caregivers and teachers, and we’d swim every single day, with dolphins and manta ray, and he could run up and down the sands and jetties as fast as his long, lithe legs could carry him. I have to get that child to the beach again. I need to find a way.
Now I’m rambling, unfocused.
Yesterday. On the ride from Anderson to Andy’s apartment, Jonah wanted me to kiss his hand. He proffered said royal hand to me from the backseat. Kiss hand?
The Godfather would like his hand kissed.
Yes, Boo, of course kiss hand. I kissed each finger and then pretended to suck his thumb, eliciting much joy from Boo.
I love the indescribable color of his beautiful, shaggy head of hair in the sunshine…
I don’t know why I didn’t color my own hair a deep blue when I was younger. I guess because I’ve always had a job, and since I graduated college in the early 90s they’ve frowned upon blue hair unless you work at a head shop.
If I ever don’t have a job I’m going to color my hair deep blue for a while.
I think he looks angelic here, with sun all over him
I really don’t care if he has splinter skills or not, of course. I just think he is a fascinating manifestation of a boy, and on top of that I get to be his mother, albeit imperfectly and frightened as hell at every turn. And yesterday: more kiss? more kiss? At the apartment and on car ride to the transfer station. More kiss? More kiss? Beautiful words. Treasured words. Joy.
Joy, beautiful spark of the Gods. freude schöner götterfunken – from the Ode to Joy by Ludwig von Beethoven (Gina’s favorite composer). They played the Ode to Joy as Andy and I exited the church with heartsmiles on our wedding day, August 19, 2000. — I’d sung the Ode to Joy in college with the Catskill Symphony Orchestra. On that day – my wedding day – I felt joy so strong I almost couldn’t take it. The day was a perfect sunny 70 degrees, as if the weather were celebrating with us. There is still celebration in it, no matter how the subsequent years have unfolded. You can’t take that kind of joy away, not ever.
I live for it. Like an open window from which you can glimpse heaven itself. It’s in the uncontrollable laughter, the uninhibited play, the favorite books, the embrace of a partner, the eyes of your child, the song that lifts you, the friend who shares, the pets who love unconditionally, the innocence that brings tears to your eyes, the purity of grace which cannot be denied.
My favorite love poem.
XVII (I do not love you…)
by Pablo Neruda
I do not love you as if you were salt-rose, or topaz,
or the arrow of carnations the fire shoots off.
I love you as certain dark things are to be loved,
in secret, between the shadow and the soul.
I love you as the plant that never blooms
but carries in itself the light of hidden flowers;
thanks to your love a certain solid fragrance,
risen from the earth, lives darkly in my body.
I love you without knowing how, or when, or from where.
I love you straightforwardly, without complexities or pride;
so I love you because I know no other way
than this: where I does not exist, nor you,
so close that your hand on my chest is my hand,
so close that your eyes close as I fall asleep.
Posted in singing, swimming, Uncategorized, tagged dream, Dwight Yoakam, Genesis, Guster, NY, Rye, Slingblade, The Capital Theater in Portchester, The Carpet Crawlers, Westchester on January 20, 2013| 1 Comment »
“The walls are painted in red ocher
and are marked by strange insignia,
some looking like a bulls-eye,
others of birds and boats.
Further down the corridor,
he can see some people; all kneeling.
The carpet crawlers heed their callers:
We’ve got to get in to get out
We’ve got to get in to get out
We’ve got to get in to get out.”
~ The Carpet Crawlers, Genesis
I dreamt of strange, vague, nightmarish, nondescript apocalypses, of dying people everywhere, irradiated, burning from the inside out. Of Andy and I trying to get to Jonah. It’s hard to breathe, see, or hear. All food is gone, and the sun is obscured by black falling snow. The car is on empty and finally stops, and a landslide of mud and logs is coming at us, certain death, and I’m trying to handle that but then suddenly we see Jonah in a huge pool. A police woman tells me sternly to remove him from the pool. “There are carpet crawlers on his raft,” she explains, and is gone. Andy and I climb in the pool with Jonah, and Jonah reaches out to grasp one each of our hands, sliding off his raft. He pulls us down to the bottom and we can breathe the water and see just fine and are no longer hungry — and the carpet crawlers are, after all, only on the surface. Then, slowly, the water drains, and we drown gasping in the air.
This following the Guster show Friday night at the Capital Theater in Portchester, NY. Maybe the significance is we had to sit next to four drunken assclowns who drank and drank and drank, laughing and talking through all the songs because dammit we were in the wayback (second to last row balcony) and they could get away with their obnoxious douchebaggery. The girl with the Coach bag asked me to watch her coat in between drinks. I wanted to say “You think there are coat thieves back here in the balcony of a Guster show?” Her steroid-large boyfriend paused his constant texting after every song to hoot and holler, laughing. Why are you HERE? I wanted to ask them. Sigh. I’m getting old.
But then the music took over and I forgot about wanting to punch the moron.
It was an awesome show. I even got a few decent pictures from my far-distant perch:
Ryan and Luke
April, Charlene, Adam, Ryan, Luke
Brian, under spotted light effects
Dwight Yoakam?
Isn’t that the country singer who played Dole in Slingblade?
I dislike Westchester. Lived there for a year. But I had to get in to get out. That night I had the carpet crawlers nightmare.
Next morning M dropped me off at Andy’s, where we met my mom and drove to pick up Boo. Everything seemed in slow motion – even Jonah, who was more subdued than usual. Even his lone aggression, aimed at Andy, fell short of notable. I brought Guardian Gus the ScareMeNot for Jonah to hold, and all was right with the world.
Later Jonah took a bath and put his head right underwater.
It reminded me of that creepy dream, but we had a good day and Boo was, for the most part, a very good boy. I hugged and kissed him soundly several times without suffering any consequences.
When I got home M and I took a long nap and then stayed up til almost 2am. Today feels like it should be Monday (because we took Friday off) but then neither of us has Martin Luther King Jr. Day off. It all balances out, but today I’m cooking homemade something and relaxing to episode after episode of All in the Family (speaking of Martin Luther King Jr. Day).
Watch my favorite part of my favorite episode. I can watch it over and over.
‘Twas a good weekend. I am appreciative.
Posted in autism, behavior, doctor, echolalia, glaucoma, language, Uncategorized, tagged Guster, Tasmanian Devil on January 17, 2013| 4 Comments »
Andy called me this morning to remind me about Jonah’s glaucoma appointment with Dr. S.
I’d totally forgotten about it so it’s a good thing he did call. E and J brought Jonah up and I met them all at the office. We always wait in the hallway because the waiting room is full of mostly 60-90 year olds, and Jonah could take every one of them down if we didn’t stop him. Bruce Banner turned into the Hulk; Jonah turns into the Tasmanian Devil.
Wikipedia describes Taz as a dim-witted omnivore with a notoriously short temper and little patience. He will eat anything and everything, with an appetite that seems to know no bounds. He is best known for his speech consisting mostly of grunts, growls and rasps, and his ability to spin and bite through just about anything.
Yeah, that sounds a little like Boo.
He was all ramped up today when I first got there, and I’d already stashed my new glasses in the car, so I was literally going in blind. Luckily he was lovey, and though he answered “no” when I asked if he wanted to sing a song, eventually he capitulated and took turns singing lines of Fa Fa and Keep it Together with me.
He wanted to touch and knock at the pictures hanging on the wall. Quiet hands, Jonah, we told him.
He sat patiently, for the most part. Then he’d get up, walk in a circle, and sit down again,
J is holding both of Jonah’s hands and rocking back and forth with him, telling Jonah silliness that Jonah loves to repeat…we had to wait for a little while and Jonah was getting impatient.
When the nurse tested his vision, he held up the little black plastic thingee that covers one eye and read what he could. He’s fine when he can use his right eye, but his left seems much harder for him. He gets frustrated and tries to cheat. When redirected he becomes angry, maybe throwing the plastic thingee or hitting the nearest person. But today he just gave a half-hearted swat into the air and allowed the doc to examine him.
“Okay, buddy, sit on your knees,” says the doctor. Jonah just sits there. J and E try to help explain it to Jonah, who then rises until he’s standing on the chair. Finally J and E have to help Jonah into a kneeling sit so Jonah can scootch himself up and into the eye machine, miraculously cooperative of bright pins of light, strange machinery, a doctor telling you to look this-way-then-that-way, eye drops, and a gadget that touches your eyeball and take its pressure.
Amazing.
M & I took tomorrow off work to travel downstate and see another Guster show; we’re staying overnight, then M will drop me off at Andy’s on the way back. After our visit with Boo I’ll hitch a ride back to Albany with my mom.
Sounds like a sweet plan. I think the amount of times I’ve seen the Grateful Dead and the amount of times I’ve seen Guster must be about the same now. Something like 18 each, maybe. I wonder if I’m the only person who was first a Deadhead and then a Gusterrhoid.
The thing is, every show is different – every show a re-energizing. I’m excited to see them. And Boo.
(He’s kind of re-energizing too).
Posted in Uncategorized, tagged mugshot on January 12, 2013| 5 Comments »
I felt like doing the title in my poor Spanish. It’s supposed to say “attack of the heart and the boy.” I like it better in Spanish, even if the Spanish is wrong.
I promised pictures.
Here are birds sitting on the iron fence outside Albany Medical Center at 8am this morning, undisturbed by my close proximity.
I like to count birds on wires and fences, but I was too tired and too freaked to count them this time.
M was woken up at 6:45am this morning with bad chest pains. I urged him to go to the hospital and he only resisted briefly (he must, I suppose, as he is a man) before capitulating and letting me drive him to the ER. He could walk but was a little short of breath and still in pain, like a hard push on his sternum, he said. I sat with him as they gave him an EEG, which looked normal, and a blood test. He wanted me to go see Jonah anyway and since he wasn’t in crisis, I left my car there for him and my mom picked me up to drive to Rhinebeck. I had only had time to roll out of bed and pull on clothes, so I looked like hell and was tired and worried. (They are discharging M as I type so he will be home soon).
So my mom drove her car down, and she waited in the car when Andy & I walked to Jonah’s cottage house. He was happy and smiling when we arrived. I waved to him through the window and he waved back. He wanted my hand, my hugs. It felt good. We gathered his things. Andy and I spoke briefly to a few of his careworkers and then walked out the door, Jonah grinning wide and holding my hand. “Hug?” he asked sweetly. I leaned down and hugged him, and the next second my face was on fire with pain.
He’d let go of the hug and taken one hand, starfish-wide, and gone lightning-fast for my face.. He wasn’t letting go, either, and he’d managed to dig in tight. When Andy got him off me, one nail raked a good scratch just below my eye. I have no idea why I’m sharing this mugshot picture – I mean, I don’t know when I’ve ever looked this bad. It actually looks like one of those “after” pictures when they show what crystal meth does to a human. What a long, strange, stressful, hurt-y, crappy day I’d had by noon.
Mama’s Mugshot
It makes no sense. Why do I need it to make sense? I could understand if he was told to do something he didn’t want to do, or to go somewhere he didn’t want to go, but he wasn’t. He was happy. Lovey. It just doesn’t make any sense. Maybe when he saw me he got mad because he was simultaneously happy to see me and also thinking why the hell do you come get me once a week and then leave me here!? I hope to God it’s not that. Would he forgive us if he could understand what we did, and why?
Eventually Jonah calmed down. I still think he’s a little under the weather. He wanted bath and had tune-fish sandwich and car ride to the transfer station and he got all of those things. He was surprisingly uninterested in train or park or anything else especially fun.
. 
M is home now and his kids were supposed to come visit this weekend but now that’s out of the question. They wanted him to stay overnight at the hospital and he wouldn’t do that. They ran a bunch of tests and say he’s okay.
I’m tired and am going to take a nap.
The Never Normal 