Got a nasty comment on my last post – the self-righteous Kate. As much as I would like to defend myself against her, and those who imply (or directly state) that I am a bad and unloving mother, a bigger part of me shrugs – albeit sadly. Why defend myself against someone who has obviously already made up her mind about me? When willful ignorance meets judgemental cruelty, the result is almost comical. If this person had read the entries leading up to our placing Jonah at Anderson, she would hear how it very damn near killed us to do it. And yeah, I suppose I could just delete those kind of comments before anyone sees them, but that would sugarcoat a blog that’s intended to be “sans sugar. ”
I really appreciate those of you who bristle on my behalf (and on behalf of everyone like me whose life is all too easy to judge). Your advice is gentle, your kindness is a cushion, and your support means more than you know. Words can and do wound, but likewise they can heal. So thank you for writing all those healing things to me.
As for Boo, he had a pretty good week. He’s ravenous as usual, and his new kick is to put lettuce on grilled cheese sandwiches. In the grand scheme of possibilities, I suppose it isn’t all that weird. I wish he’d slow down and chew better, though. He often eats so fast he ends up gagging.
We did some singing on our last car ride. Jonah’s into the Chainsmokers and all kinds of other music. Lately he’s been asking for a CD of electronica my friend Gina made in 2000. It’s called Oracle of the Silent Mind; she sampled everything from Bugs Bunny to Beetejuice to make this opus. I love that Boo loves and chooses it on his own accord, without prompting from his biased mama – and I’d love to share it with you, but I need to upload it to YouTube.
Other current Jonah favorites include a host of Top 40 selections (it seems Ryan Seacrest is the new Casey Kasum), some rap, and, on nearly every car ride, he requests the beloved immortal classic by Sonny and Cher, Gypsies, Tramps & Thieves.
Yeah, you read that right.
About a year ago I made a mix for him with lots of poppy dance music, like Groove is in the Heart and Gonna Make You Sweat (Everybody Dance Now). I added Gypsies, Tramps & Thieves to the mix as a joke – and guess what? It’s the only song on the whole damn mix he ever wants to hear. “Mama mix?” he asks to request this CD. Then, “Number 12?” he adds, evidently jonesing for some Cher. At the conclusion of the song, he states abruptly, “All done Mama mix,” and is on to the next request. If he asks for radio but is displeased with the current offering on that station, he’ll ask “other radio?” and Andy will try another station.
I miss my Boo and am looking forward to tomorrow’s visit. I’d like to try to make another mix for him, if only to find out which song he’ll enjoy the most. Knowing his penchant for Gypsies, Tramps & Thieves, I’m tempted to seek out a similarly goofy tune – maybe Escape (The Piña Colada Song) or These Boots Are Made for Walkin.’
Where Jonah is concerned, the best place to be — the most dreamed of, sought-after, wondrous, asked-for place — is Grandma’s House.
For a variety of reasons, it has remained thus since he was a baby. (Of course the best part of Grandma’s House is grandma herself).
Jonah’s sitting on grandma’s counter in this picture, taken Christmas Day. I was sick and kind of weak; I tried to get a good picture of them standing side by side, but to no avail. I wanted to show how Boo’s only a few inches shorter than my mom now, which would make him about 5′ or 5’1″ at not-yet-thirteen. His growth seems to be happening, somehow, more quickly than before, as if I’d looked away for months and finally turned around to see him.
I’m kind of wan in this pic, but Jonah’s all smiles.
Here are a few great pics we took in December:
I love the way that last one came out, with all things notJonah softened. It’s almost as if I knew what I were doing when I took the picture; ’twas luck, alas, and nothing more. (For kickass-quality photography you can visit my sistercousin DiAnna’s website).
Then a few weeks ago Jonah started in a new classroom. He was aggressing regularly in the other one, even on days when all seemed fine at his house. His teachers and therapists thought maybe he was bored or unchallenged. So far he hasn’t had a major aggression in the new room, so they were probably right. I know Jonah’s bright, but it’s hard to know how much of that light we’re going to be able to coax from behind the clouds. So far so good.
He’s been a happy kid, mostly, at any rate. He adores his daddy and got to spend two overnights in a row at his apartment recently, which is right up there with Grandma’s House on Jonah’s list of preferred places to visit.
Lately Jonah’s developed a keen interest in his wardrobe and, more recently, in others’ as well. He’s got two pair of sneakers at daddy’s place – one blue, one green – and he’ll tell you in no uncertain terms which he wants.
The other night Andy put him on the phone with me. Jonah’s definitely not one to dominate a conversation, so I asked him a lot of questions he could answer with “yes” or “no.”
Eventually I said bye bye, Boo; mama loves you. Jonah answered byebyemama and handed the phone back to Andy. I heard Jonah ask twice: mama comin’ in? to which Andy automatically replied: 13 hours.
It seems to satisfy Jonah to have a number – any number – I think so he feels like what he wants is comin’…and when.
Then, in the background, I heard Jonah say: Light green shirt? Andy answered no, buddy, This shirt is good. I guess Boo’s new thing is to decide upon not only his own clothes but his father’s as well. Sometimes Andy capitulates, allowing Jonah a glimpse into one possible career path toward fashion or wardrobe design.
I can just see him in Hollywood, pulling at a “wrong-colored” costume donned by Jennifer Lawrence, insisting no! no!
A few weeks ago I traveled to Bloomington to see Tim perform in a holiday concert with the Quarryland Men’s Chorus, which was as awesome as it could be. Tim had a short solo in one song, and after both performances, audience members sought him out to compliment him. I stood at his side, grinning proudly as if I were the one responsible for Tim’s mellifluous bass.
Tim’s in the middle of the back row, with the long blonde hair & awesomely full beard
Tim also gifted me with the best Christmas present I’ve likely ever received – but for now it’s just between us (and, due to my uncontainable excitement, two friends whom I swore to secrecy).
* 12-29-14 * NOTE: Now lots of folk are guessing Tim gave me an engagement ring, and I’ll put that rumor to rest. We’ve been in a long distance relationship for just 5 months. And this gift is better, presently, than the prospect of marriage — to anyone!
We are happy.
And so life is good.
I am getting used to being cold, bundling up with resignation and maybe even complacency against my chosen 55 degree home temperature. The no lights thing is actually more difficult – I go through candles like boxes of Tagalongs at Girl Scout cookie time, and I now have an oil lamp. Since the days are so short, I want to go to bed at around 6 or 7, like an old lady.
I get out every day, when I can motivate, and I fight winter blues/being alone/stagnation, reminding myself that every day now, the days are lengthening. There is much to do and plenty to look forward to with the excitement of this new year coming – 2015 rising like a glorious dawn.
I know the journey truly is the destination, and this one feels really right.
It was the first thing Boo asked for when I met him at the car; Andy had just driven up to the eye doctor’s office and I was there, yesterday, waiting for them. “Octopus?” he said when he saw me, reaching out his hand. “Hi, Boo. I’m sorry. Mama forgot the octopus,” I answered, cursing myself. I’ve bought him so many octopi and he destroys or loses them all, or they get so grimy and un-washable we have to toss them away. But next appointment I’ll be sure to have one at hand.
An older picture of Jonah and his “octopus.”
This is a picture of what Jonah calls “octopus.” Any kind of those squishy rubbery toys with nub or finger-like appendages will fit the bill – even those that look like caterpillars or balls. To Jonah they are all octopus.
He was a good boy in the car ride up, and a good boy at the eye doc office, even though we had to wait a good while in a small room.
Daddy played ‘push and pull’ Jonah’s legs while we waited.
After a while, Jonah started turning his circles in the small area, becoming less patient.
You can see where we’ve cut the hair along the top of his head to keep it away from his eye shield. What he needs is a buzz cut for the summer.
We sang “I’ve been working on the railroad” for a while, trading lines, but then he stopped and said “no,” clearly done with that entertainment. Finally, I thought the taking of the pictures themselves might occupy him. Sometimes it makes him mad, so usually when I take photos I do so surreptitiously. But this day he enjoyed it. I took one of him with his daddy and then daddy took one of him with me:
Coming in for a hug with daddy.
Sitting on mama’s lap
Eventually Andy went into the hallway to tell someone that Jonah was fixing to have a tantrum (though he really was still being good) — we knew the longer he was left in the room, the harder it would be for the doc to examine him once she arrived. Soon afterward the doc appeared. She had me take all the tape off his eye shield and remove it altogether; I hoped against hope we could leave it off for good this time. But his eye still looked bloody and the pressure was too high (around 32) – both of which things, she told us, were to be expected.
She put two kinds of eye drops in his eye, one of which stings, and did an ultrasound with blue goo all over a wand against his closed eye. All of these things would bother an adult, let alone a child of 11 with autism. But my little trooper was so good – he patiently let her examine, shine lights, and more while Andy and I waited anxiously.
She said the ultrasound looked like things were much better, and she wanted him to have two more appointments, a week apart.
Unfortunately, we had to put the eye shield back on. Jonah seemed resigned to this and happily gave both of us kisses when it was all over. I needed to return home to work, but Andy brought him to see grandma, and then back to his residence, without much trouble at all.
I was so proud of my Boo.
Thank you to all of you who sent prayers and well wishes through comments, or through my facebook page, or by e-mail, or live and in person, or in your hearts. Jonah loves you all, unconditionally. Mama promises.
“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.”
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).
“Can we miss
the storm that sucked the
whole
world
in?” ~ Guster
So here comes the Frankenstorm, and it’s become a mini-series on television, just as every similar event becomes a Truman-Show-esque production of graphics and sound — loud bass drums pronouncing doom. Bum bum BUM! Frankenstorm 2012. We shall see. I went to the store, yes, and got extra stuff. Better safe than sorry and all that.
L and M brought Jonah up from Anderson on Friday for his retina doctor appointment. We had the 9am appointment and still had to wait an hour. It’s hard enough for your average kid to wait an hour, let alone a Jonah-kid. From now on we’re just going to have to get the first appointment of the day.
I gave him PEZ, green tea, and a stress-ball to keep him occupied.
His eye looked good, said the doc. The pressure’s gone down and his right eye looks normal again. And he was a very brave boy. He even waited pretty patiently in a special large room they put us in. The room was filled with expensive looking eye-equipment and I’m thinking are they insane? But there were three of us there to keep him busy. I even got him to sing “I’ve Been Working on the Railroad” and “Keep it Together” to calm him. More often than not Jonah will hush me when I start to sing, but this time he was into it. I love when we sing together –I will sing a line or two and then point to him, and he’ll pick it up in perfect rhythm and tune, and then I’ll take over, then we’ll sing together, etc. It’s pretty cool.
Yesterday our visit was good – Rhinebeck was having one of its ubiquitous, cool festivals – this one for Halloween, and the streets were lined with costumed adults, kids, and dogs going business to business to get treats. If you wonder why we didn’t take Jonah, you haven’t been reading this blog for long. Besides, the kids at Jonah’s school have their own Halloween trick or treating thing. (Going for tongue-in-cheek, I bought Jonah a prisoner costume).
During the visit we stuck to the routine – lunch, bath, jumping on the bed, rapid-fire requests for various items of food and drink. He got his trip to the grocery store, and was a good boy amidst the Frankenshoppers.
He was particularly lovey, especially with grandma…
And all in all it was a beautiful day with Boo. I cried on the way down, though, idiotically and forcibly bringing forth memories of horrible times. I have one particular memory, after Jonah was diagnosed as special needs but before the autism diagnosis…
I’d signed him up for a music-and-movement class for kids about his age (18 months or so).
The instructor has the parents all sit in a circle with our kids on our laps. Strike one. Jonah wants to wander. Finally I get him semi-settled near my lap and the instructor tells all the kids to reach into the basket in the middle of the circle and take two maracas.
Strike two. Jonah has no idea what she’s just said or is ignoring her completely. So, tears behind my eyes now with confusion and embarrassment, I quickly grab two maracas and hand one to Jonah. Next we’re instructed to shake our maracas along to a song she’s going to play on the guitar.
Strike three. Jonah breaks away from me and runs to one edge of the far side of the room, where the wall-length radiator begins. First he gets a good, quick visual on the scene and then he places his maraca on the bars of the radiator and runs up and down the room – Bat-a-bat-a-bat-a-bat-a-bat-a-bat-a-bat. You get the idea. By the time it was over I was practically sobbing. Oh my God what is the matter with my boy? I’d never seen him in the context of a bunch of other kids his age, all doing the same thing — he being the only one who couldn’t, or wouldn’t.
I need to flush that memory down the garbage chute.
I was fine by the time we got home, and psyched, too, because friend H and I were going to see the Classical Mystery Tour which, to my understanding, was the Albany Symphony Orchestra playing the songs of the Beatles. It was a birthday present from my dad, who knows I’ve loved the Beatles since I was 13 or 14. (I’d turn down the volume on my Atari 2600 Pitfall game and listen to the Beatles’ 20 Greatest Hits instead). We had good seats, about half way back.
Last night was almost a full moon, and H and I saw evidence everywhere we looked. What a strange, amazing night. I ran into my dentist, of all people, who thought he recognized me as a dental-supplies vendor. I said, “no, man, you’re my dentist.” (I don’t think I actually said man).
Then, this guy who tried to direct us to the bathroom had such a heavy accent that we had no idea what he said. We could only thank him and run far away to laugh until we cried. We had great seats and noticed a mostly-older audience, though there were plenty of Gen Xers and younger, even. H went for a drink and even brought me back a t-shirt.
I didn’t realize there was a Beatles look-and-sound alike band playing with the orchestra. Even after I saw the main instruments and grand piano on the stage, I didn’t realize what we were in for…and then, still before the concert started, things got truly weird. A man sat down next to me. He was alone, and I quickly realized he was on the high end of the autism spectrum. “Don’t you love the Beatles?” he asked happily, and I enthusiastically answered “Yes!” He was practically bouncing in his seat.
He told me his name, J, and his exact birth date: November 30th, 1970. Throughout the concert he would lean in toward me and sing in this beautiful voice. I sang harmony to his melody and melody to his harmony. When I complimented him on his voice, he told me he was a choir member of St. T’s in a nearby town. I tried not to stare at him. It was difficult for me not to love him.
I was amazed and not amazed. How can I explain? This is the third concert I’ve been to in two years or so where I was seated next to a disabled person – all were adults, and two of them had autism. There is no way this is a coincidence. I have been struggling with finding faith in the midst of all this, and I feel these incidents are nudges from divinity. I’m here. I won’t leave you. Trust. Don’t worry. I love you.
All these things and more I hear. Oh, and I want to share this video, partially narrated by my favorite Father Noone, about the kids in Haiti I’m trying to help. I realize there is a Frankenstorm coming and perhaps some people will need much more, but even one or two or five dollars will help a cause I believe in strongly. You can support both. The tiniest amount, when we all chip in, becomes a miracle.
Who knows why I get all up in arms about one thing and not another? I think I am behind this because I love Father Noone, and I met Pierre, and now I see, in a world where it evidently requires a billion dollars to run an election campaign, that it is possible to raise this comparatively paltry amount of money so that these kids can go to high school and manage their own country effectively. Education is everything.
“It has always seemed strange to me…the things we admire in men, kindness and generosity, openness, honesty, understanding and feeling, are the concomitants of failure in our system. And those traits we detest, sharpness, greed, acquisitiveness, meanness, egotism and self-interest, are the traits of success. And while men admire the quality of the first, they love the produce of the second.” ~ John Steinbeck
Somehow I think he’s right, and this is as frightening an idea as any. Maybe the key words in his quote are “in our system.” But whose system is “ours”? Americans? Humans?
When Jonah was a baby, I envisioned bringing him into my world of do-gooder bleeding hearted-ness…of keeping him at my side as we served food at soup kitchens and put quarters into meters and handed out flowers to lonely folk, bringing arts & crafts toys to kids in hospitals, visiting the elderly in nursing homes, hanging out with veterans at the VA hospital… Oh, I had all kinds of notions and ideas. He’d grow up learning to give back, to be a good, loving, thinking, compassionate man.
It was one of the hardest illusions to have to watch fade before my eyes — and one I want to re-embrace, if only on my own for now. Maybe all is not lost – if we are able to mitigate Jonah’s aggressions to the point of nonexistence (or close to it), maybe as a teen or young adult I could try to bring him with me and we can do somethings to help somebodiessomewheres. I will not die feeling as though I’ve never done anything of significance – and if I can’t teach it to my Boo, I can live it. Andy does a lot of soup kitchen work (and God knows what else he doesn’t tell me about) where he lives. He can’t bring Jonah along either, of course. But we can do what we can do in his name, in honor of Boo, so to speak.
For now I watch my boy hurt instead of help others. It is a frustrating turn of fate — like when my Fox-watching conservative mother adopted a baby girl who turned hippie. Lo siento, madre.
So Andy brought Jonah up to see me and my mom yesterday. Jonah wanted this and that, all kinds of things to eat and do. My mom’s next door neighbors were away and kindly offered us the use of their pool once again. This time I took video, and upgraded my account so I can imbed it…somehow…I think. Let me try. The auspiciously cool thing about it is he dived a few times during the 3 1/2 minute video, which he hasn’t been doing much lately:
I have no idea if what I just did worked. In case it didn’t, here are some pictures:
Then, straight to the bath, as per Jonah’s request…
He scrunches down until the water fills up the tub
…and waves his arms in the wind and rain from the backseat, on the way to see train…
“…and the music of the pearl drifted to a whisper and disappeared.” ~ The Pearl by John Steinbeck
There is a fine line between telling my story “sans sugar” and telling too much, or, worse, lacing it with saccharine. The truth is, the narrator is still not exactly sure where she belongs in this world, if she belongs in it at all – but also that this doesn’t matter. It’s all about Jonah.
For an only child like me it’s a tough pill to swallow sometimes. It isn’t at all about me. And yet, can I be relieved of my role in all of this? Of course not. Jonah needs his mama.
Still I sometimes think: I can’t live this life anymore
And: What a nice hot day to park the car at the top of the Rhinebeck Bridge — so perfectly inviting for suicidals – no barriers to your leap, yet reminding you every few hundred feet or so that LIFE IS WORTH LIVING. I know I have mentioned this bridge before. I’ve always wanted to fly, and that view is so spectacular, and if I ever did come to that fine line and cross it, I think that would be my place to fly-bye
And: I wonder if other people have places in their minds, like I do. My place is like the cyanide pill they ostensibly give you when you go up in the space shuttle. It is a choice you may never have to make but one that’s comfortingly there nonetheless
I still, though, think: I have to do whatever it takes to ensure Jonah’s health, education, happiness, and nurturing. I must ensure everything. Some of that everything is making sure things can stay the way the are, and it looks like things are going to need my help for that to happen
And I berate myself: Youain’t going nowhere, fool
And I can dance around things that were said this weekend, and all the millions of ways, as usual, in which I was spectacularly weak. But I’ll post pictures too, for Jonah was mostly good, albeit scattered and frenetic.
It was a sunny day, almost too hot. A beautiful Saturday, and a good portion of Jonah’s day and mood mirrored that.
Andy was kind enough to drive Jonah up to visit us at my mother’s house.
my mom’s next door neighbors kindly let jonah use their play-set and pool, once it’s opened. jonah asked for “Pool?” a dozen or so times.
At home way at the top, my climber-boo
hey mama!!! hey mama!!!
Eventually he wanted to go see train so we piled in the car, Jonah singing along to the Top-40 Andy’s got on the radio. We were relieved to see the green light down the tracks meaning a train is coming, so we pulled into a parking lot to wait and watch for it, like we’ve done hundreds and hundreds of times before.
This time, though, he got scared of the train after a few seconds.
This was the last of the pictures for the day.
Out of nowhere he grabbed for my hair. I know what to do when someone pulls your hair (grab their fist and pull it in toward your head) so it wasn’t a big deal. Andy got out of the car to let me out of the car, and then Jonah burst into tears, sobbing and upset. Within minutes, though, he was okay and we were able to say bye bye to the train (thank God it wasn’t a long one) and go back to Grandma’s for another shower. His beloved train reminded him of how much he misses home? No. Don’t invent things inside Jonah’s head, I tell myself. You’ve got enough troubles inside your own.
Today M and I went on a long Sunday ride, just like in the olden days when it was deemed neither wrong nor unusual to do so. When we got home I planted flowers in the God-awful hot for about 13 minutes until I felt I would die. I thought about Andy, and how unless I am mistaken he is working for somebody today doing some mulching under this same heat, and how under that same sun too my boy probably asked for pool ad infinitum.
Tomorrow I have to go back to producing numbers; here I can produce words. It’s a fine line, my tightrope. Sundays are difficult. And I only took 3rd place in a “query letter” contest I was hoping to win. And I’m not schooled in query letters. Looks like I have some work to do. First place was the opportunity and $500 to self-publish.
I don’t really want to self-publish anyway. Isn’t that, after all, what I’m already doing?
Anyway. Jonah has his daddy close-by. Today, after all that hot work in the sun, Andy came and got Jonah and kept him for another part of the day.
“He was fine,” Andy told me on the phone. “He had a fun day.”
For me, for now, it is enough. As usual it is still only early evening and I am bone tired. I imagine Jonah settling in to sleep. I miss watching him sleep but imagining it is sweet — I can use memories and visions and dreams. It is good.
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.
Well I almost missed my connecting plane in the ridiculously gigantic Atlanta airport but thank god and little baby jason, my next flight was just one gate away, maybe a 60 foot walk. And it was so wonderful to step off the plane and back to my pretty little city, even though it was about 35 degrees colder than San Antonio.
I didn’t get in until midnight, which is waaaaayyyy past my freakishly early bedtime.
Andy drove Jonah up to see me and “gwandma” at my mom’s house around 11am the next day, thank you Andy, so I didn’t have to get up early and drive down. But the visit was short, and Jonah wanted daddy or grandma, not me. I’m jealous, and it hurts, and I know intellectually I should not take this personally, but I long for Jonah to run into my arms and squeeze me tight, the way he does with his daddy. I want him to ask for me the way he asks gwandma? gwandma?
And then of course I don’t. Why would I want my child to hurt more by missing yet another person? I love him with all my heart and that’s what matters. His daddy is down there with him – takes him to the grocery store despite Jonah’s screeches and screams, bearing stares and glares and God only knows what, then drives him to the park or the train station…in the cold, on windy days, without complaining, just so Jonah can get fresh air, fun, and exercise. There is no denying Andy is a fantastic father. No wonder Jonah goes flying into his arms.
But the last time I drove down with my mom to visit Jonah, I walked in the door first and there he was, my sweet little boo, sitting in the chair nearest the door. He looked up, saw me, and immediately looked around me for his father. And it felt like shit.
I need to remind myself this blog is subtitled “autism: sans sugar-coating.”
I’ve been sugar-coating-by-omission, trying to sound optimistic and cheerful and fine. This visit wasn’t fine. They were gone before we knew it because Jonah started flipping out, getting all ramped up and squirrely, rapidly cycling through requests, growing more and more frenetic. All red flags for meltdown/violent behavior. Tune Fish Samwich? Car ride? Bath? Bath? Bentley (the neighbor’s dog)? Hot dog? Bath?WantCookie? Then, always, and worst of all:
Home? Home? Home?
After their visit I lay down, my head aching, thinking about the Ned Fleischer Life Celebration that night. Luckily I got to sleep for a few hours, then I picked up an old high school friend (who also has a child on the autism spectrum) and we drove there together.
It all scared me the death. In high school I mostly stood in the background and admired people. And was jealous. (There we go, cycling back to the jealousy). Here’s where I could learn a lesson or two from my son; I bet Jonah’s never been jealous a day in his life.
But I was not jealous, not even one little bit, when Anne Empie Ryan stood up to sing. With that incredible voice, that voice I hadn’t heard in 25 years and would have paid money to hear, she sang two soft, heart-wringingly tender songs. Clear and strong, she bravely swallowed down everything – her grief, her self-doubt – and sang her heart out. I put my hand to my face to try to catch the tears rolling freely at all this beauty and pain….a standing-room-only of young and old who loved a man dearly because he was, without doubt, one-of-a-kind – and her perfect tribute to him, from all of us, delivered by the voice of an angel.
Memories landed on memoies, filtering, slowly, and I was unsure at first of names, though I recognized so many people. I put on the bravest face I could and approached many folks I knew (and a few I didn’t), trying to appear normal and fine. Luckily, crying didn’t seem out of place here. When I walked over to Anne after she sang, we hugged tight, sobbing and holding one another like best friends.
Everyone was so kind to me. I didn’t have an anxiety attack (which felt more like an accomplishment than it should have) and I was grateful for the smiles and gracious greetings. I had fun and met or re-acquainted myself with a dozen or two really awesome people.
That’s something to be said for Mr. Fleischer; after all, every one of them was there to celebrate him. He attracted good people.
It was a beautiful tribute – and though, yeah, he may have been pissed at all the attention given to his “life and times,” I think he also, deep down, would have been proud.
On Christmas Eve I went with M to return a fixed computer to a man’s apartment; the guy had autism and softhearted M had done the work for free. The man had all these vinyl albums hung on the walls, and each album had a painting or design on it. In another room he’d constructed 3-D sculptures from popsicle sticks and fuzzy dots and crafty pieces of all kinds of things.
It was all very cool. He had so many books and so much music. Joseph Heller and J. R. R. Tolkien, Mario Puzo and Thomas Hardy. His music was eclectic: Eric Clapton, The Beach Boys, Gordon Lightfoot, the Soundtrack to Grease. And he was very happy to have his computer back in time for Christmas.
He would ask random questions of us, and he could make good conversation. I asked him if he had brothers and sisters, and then he asked me. M and he were both the youngest, they discovered. I asked him about his music and books, and the artwork all over. “Oh, yeah,” he said enthusiastically.
“Were you born on July 30th?” he asked me. “1969,” he added: statement, not question.
I smiled. “No, but close. September 2nd. The 1969 part is right.” Then I asked, “When is your birthday?”
As if thinking weren’t you listening? – he said “July 30th, 1969!”
I liked him.
While we were there his mother called. Then he said his counselor was due to come over soon, so I asked him directly, “are we all done or do you need any more help?”
“Oh, yeah,” he said in the same enthusiastic voice. “We’re all done.”
Good thing I’ve read The Speed of Dark by Elizabeth Moon, because I don’t have a lot of experience with adults who have autism, and that book helped me see things through his eyes. You have to be pretty direct; subtleties and metaphors get lost.
That sounds like a Paul Simon song: Subtleties and Metaphors.
Andy brought Jonah up to my mom’s house on Christmas Day and then kept him for a long time after that. Jonah was very good at my mom’s, even though he paced a lot and wanted sandwich and bath and car ride in rapid succession, caring nothing for the presents. He is indifferent to everything related to Christmas except perhaps the lights and songs.
Definitely the lights and songs.
I am kind of okay, but for a while I couldn’t write because I was re-visiting the necessity, safety and camaraderie of last year mid-December, when everything changed forever. I love those peeps, even if I did only know them (in person) for 8 days.
Thank you to everyone who has written. I just don’t get to my e-mail as much as I want to. I read them but then I can’t reply. I hate bitching about shit, and I’m always bitching about shit. Today my mom and I spent hours sorting through like 15 bags of clothing into donation and keep piles for Jonah. I was agitated and tired.
I wanted to clean today. I cleaned and cleaned and organized and cleaned. There is still too much. I keep thinking of the man who was born on July 30, 1969.
It occurs to me that we are equidistant from Woodstock.
The Never Normal 