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Archive for the ‘autism’ Category

Someone nominated me for Babble’s Top 25 • 2011 autism spectrum blogs, which is cool and kind of humbling.  Even though the title says it lists the ‘top 25′ it actually has the top 100 or so, based on readers’ votes.  If you read my blog and like it, will you please click on the link above, find Normal is a Dryer Setting (I think I’m number 33 or something right now) and then click on “I like this?” 

My goal is to make it into the actual top 25. 

Thanks.  🙂

It’s supposed to be 95 degrees or so today, and we’re planning to go back to my savior-friend H’s house after work so fish-boy can swim some more. 

This morning when I got to work, I was unloading the dishwasher.  We have these very tall, heavy glasses and I held one in my hand for a second and really, really wanted to throw it at a hard surface, just to watch it smash…to see the shards fly…to destroy something.

But I didn’t.

“Suffering is not enough. Life is both dreadful and wonderful. How can I smile when I am filled with so much sorrow?  It is natural–you need to smile to your sorrow because you are more than your sorrow.” — Thich Nhat Hanh

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My good friend H, bless her, invited me and M and Jonah over to her house tonight and Thursday night to swim.  It’s all for Jonah, of course, and I soak up every moment of his dolphin-happiness;  at his request, swimming sans swimsuit again.

At one point he came climbing, seemingly happily, up the stairs of the pool and onto the deck, where he ran past me and went to dig his little fingers into H’s son D’s face.  We managed to avoid any injury, but only by a hair.  We re-directed Jonah back to the pool, and brave little D spent just a moment hiding behind his mom before smiling again and throwing balls into the water for Jonah to play with.  He’s a sweet little boy, almost 4.  I marvel at his words – his brain and how it works so differently from Jonah’s.

It’s always a swim-and-run, as Jonah decides abruptly when it is time to leave and simply starts heading toward the car – but this time Jonah scored himself a hot dog and some black soda as well, the little scamp.

When M and I got home, he surprised me by having DVR’ed old-school Bugs Bunny cartoons, and one of them was my absolute favorite – with Marvin-the-Martian:

Now Lewis Black is on TV; M and I saw him at the Palace Theater last year.  He just said:  “The Republican party has bad ideas, and the Democrats have no ideas.”

I think he’s right.

Anyway, I feel better tonight.  I feel grateful.

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I don’t consider myself much of a poet, but I wrote some poems for Jonah when he was a baby, when I expected something far different than what my life has become…when I saw a path clearly before me and walked it with something like confidence… 

…when I expected to be sitting in the bleachers now, cheering him on at his little league game.  When I expected to be friends with other mothers whose kids played with and shared activites with Jonah.  When I expected to be able to bring my son to a child’s birthday party and watch him scream with joy as all the candy came pouring out of the piñata, instead of hovering over him as he opened and closed the host’s sliding glass door incessantly. 

Instead of taking him to the park by myself, pretending other parents and kids weren’t staring, wondering, maybe judging, but never approaching us except when some child would ask with curiousity, “Is he a baby?” or “why can’t he talk?” – and me choking on my tears as I tried to explain.

…instead of losing touch with most of my friends because I became a hermit and uncomfortable around (and often unfairly resented) NT families.  And all this before any aggression and violence.   And all that before checking myself into a mental health facility.  And all that before making the decision to take him to live at a residential school.  And all that before ending my marriage. 

Do I sound like I feel sorry for myself?   Sometimes I do.  My therapist even gave me permission last night, so long as I don’t martyr myself or wallow.   In 4 weeks my son will be gone and my legal separation will be taking place.  Doc tells me I have osteoporosis with a lower vertebrae fracture.  I’m waiting on results from two biopsies, can’t keep weight on, have this strange ringing in both my ears, and sleep as much as I possibly can.  (I”m definitely not Darwin’s poster child).  I’m so tired of crying and feeling anxious, missing parties and weddings and picnics I am invited to because I can’t bring myself to go; if anyone asked me anything at all about Jonah, I feel like I’d lose it and ruin all the fun. Plus for me right now there is nothing to celebrate except “I am doing the right thing” with Jonah, so people tell me. 

Some people insist they couldn’t do it, “put their child away.”  You can when you have to.  You can do anything when you have to, I guess.  I know this is just a hill I have to run up and over, but my legs are cramping and I have no breath.  I don’t know what’s on the other side of the hill, and that scares me too.  Weakling, a voice inside me whispers.  WorthlessYou are superflous now.

I’ve revisited my poems from Jonah’s babyhood, and I thought this one strangely prophetic:

I am your mother.

I may hold you clumsily close, my
sharp angles & skinny arms awkward,
but I hold you close anyway.

You find a comfort in my bones
as walls of a former residence;
as familiar pillars echoing womb whispers…
as fetal backdrop for acrobatic feats.

I may sing you nonsense, silly snippets
of all kinds of songs, lazily off-key
but I sing them to you anyway.

You find a diamond in my song
as the voice you heard awash, internal;
as divinity, a speaker in the sky…
as soundtrack to gestation’s miracle.

I may love you with a racing heartbeat
composed of odd & syncopated rhythms,
but I love you with every heartbeat anyway.

You find a living element in my love
as the cycling pulse of ocean tides;
as habitat for emotion magic, undefined…
as something inside you that can never die.

I will always be your mother.

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“I been talkin’ to Jesus, but he’s not talkin’ to me…”  ~Guster

Wednesday morning I met Andy and Jonah at the Retina Care Center at 7:30am for Jonah’s eye exam.  The last couple times Andy tried to drive him, they never even made it to the building because Jonah was violent, so we hadn’t been there for a while.  And even though we always ask for the first appointment of the day and it is the crack of dawn, there are always about 9 other patients waiting; I don’t think Jonah’s ever been the first patient actually seen by the doctor.

The staff knows Jonah falls apart quickly – they’ve certainly seen it many times before.  And when I say “falls apart,” I mean falls the fuck apart, aggressing so that Andy has to get him out – biting, scratching, kicking and thrashing – and screaming so piercingly, frighteningly loud you could sell the sound as a special-effects scream for a horror movie.

But Jonah did well this time.  He only needed to be re-directed about 40 times during the course of our 15-20 minute wait.  He begged repeatedly for “ride brown car-ah,” dumped the container of glaucoma brochures, nestled his little face against his daddy’s, asking for hug?, yelling MEOW, walking over toward the exam room and back to mama, announcing boobie!, flopping and flailing on the carpet at least twice.  All this on medication to calm him.

(My friend K just e-mailed to tell me it looks like Thing from The Addams Family is crawling on Jonah’s head, and I laughed my head off.  It totally does.  Creepy!)

It’s funny how you go from being embarrassed by your child’s behavior to not really giving a damn if people think you’re bad parents or your kid is an unruly retard.  It took me a good while to get to the place where you don’t give a damn.  It feels better here.

When they finally gave Jonah his eye exam, though, I was impressed at his cooperation to deal with the dilating drops, more waiting in another waiting room, sitting in a strange chair in a small exam room in the near-dark, holding the black plastic thingee over one eye, reciting his letters.  (How do they get this information from non-verbal patients?)  He tolerated the different slides of  smaller and smaller letters – with both eyes, even.  The doc told me later that his eyes were about 20/25.  After she examined his eyes in another exam room (with fancier equipment he also tolerated admirably), Andy and Jonah went bye bye doctor and I stayed behind to talk with her.

She’s kind, sharp and smart; she was the one who operated on Jonah’s left eye.  I trust her.  I made an appointment for October and left, holding the card in my hand, thinking the next time we bring him, it will be after picking him up where he’ll be living, an hour and a half away, at the Anderson School for Autism.  Halfway down the hallway stairs I stopped walking and turned the card over and over in my hand.  “…where he’ll be living, at the Anderson School for Autism…”

I revisited the thought from a place of detachment, kind of the way you do when you first hear about the death of someone close. There isn’t a right way to react to all that has happened during this past year.  I’ve gone into a mode where I’ve ceased to be surprised by anything at all, where every part of me knows that anything can happen, at any time, to anyone.  Everything comes at us so quickly now, and there is a sense of unshakable urgency.

Yesterday after work Andy and I took Jonah for a car ride, and on the way home there was a beautiful rainbow.  (Whenever I see a rainbow, I stop whatever it is I’m doing to take a picture – even if it means running out into the parking lot at work and getting all wet to do it).   I pulled the car over and took as many pictures as I could before I started to feel like that double-rainbow dude on Tosh.O.


I need to continue to notice things, be grateful for things, believe things.
There is no other way right now.  This is my necessary path.

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On Friday I reached out to a LinkedIn contact whose description said she was an ASD (Autism Spectrum Disorder) specialist.  She was incredibly kind and has made a social story for me to read to Jonah as he gets closer to transitioning out of Wildwood and into Anderson.

Also on Friday my mom and I drove to Anderson for a tour (her first, my second).  She was very brave about the whole thing and only cried a few times.  We got to see his room, and the bathroom (with a bath tub) is right across the hall from him.  Today I’m going to work on his social story and make a list of all the things I still need to do (get doctors to sign things, give us prescriptions and permissions…buy things on the list I haven’t yet gotten him.  I’m even sending him to school with my beloved GUSTER book bag).  These last 5 weeks are going to go fast; but then again, summer always seems to fly after the 4th of July has passed.

Emotionally I have good days and bad days, just like boo.  It is worst when I approach the cash register with a pile of his towels and bedding or whatever.  One cashier even asked me if I was going off to college – which was flattering, considering I graduated from college 20 years ago, but her question also required some sort of response.  I smiled that just-smile-Amy look I have on my face a lot these days and told her, simply, “no.”

Yesterday M and I took Jonah to swim at my friend H’s house.  Her 3-year-old was there but he was floating around in a pool toy so whenever Jonah told him “bye bye,” H could navigate her boy away from King Jonah of the Pool.  Meanwhile Jonah cavorted, swam around, went underwater, and jumped in about 80 times.  When he was done, though, he was done.

“All ny-yah,” he said (rhymes with pie-yah) which is his invented, alternative way to say “all done,”  and he climbed out, ran down the pool stairs, and started to make for the car.  “whoa, whoa, little boo,” I said as I caught him up in my arms.  After chasing him around the pool deck for 10 minutes or so, I got him dried off and dressed, and we quite literally swam-and-ran.  Five minutes later we’d thanked H, said goodbye to the other people there, and were back in the car, where Jonah promptly smacked my face when I put him in his car seat.  I’d already taken off my glasses, so it wasn’t too bad, as Jonah’s smacks-in-the-face go.  All in all I’d say he did really well there.

M is working on his car today, using instructions from online and the knowledge he learned from his dad, working on cars growing up in the ‘sticks’.  He’s doing stuff 90% of non-mechanics wouldn’t attempt, I think, but what do I know?

M is very supportive to me through all of this, helping care for Jonah whenever he can and holding me when I need to cry about what is happening.

But I’ve found an outlet – a way to turn the negativity into positivity – a method through which I can focus on something good, something that makes me feel like I’m not rapidly approaching the unimaginable age of 42 without having done anything of any real significance.  Now I am changing what I can, where I am, within my means and ability.  Whether this sudden need to do something good is inspired by chance, middle age, or Jonah’s leaving, I don’t care to analyze.

I have always loved this story:

Adapted from The Star Thrower by Loren Eiseley (1907-1977):

Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.

One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.

As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean.

He came closer still and called out “Good morning! May I ask what it is that you are doing?”

The young man paused, looked up, and replied “Throwing starfish into the ocean.”

“I must ask, then, why are you throwing starfish into the ocean?” asked the somewhat startled wise man.

To this, the young man replied, “The sun is up and the tide is going out. If I don’t throw them in, they’ll die.”

Upon hearing this, the wise man commented, “But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can’t possibly make a difference!”

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, “It made a difference for that one.”

This story has appeared all over the web in various forms, usually with no credit given to Mr. Eiseley. Loren Eiseley was a anthropologist who wrote extensively. He was the ‘wise man’ in the story, and he was walking along a beach after a storm and encountered the fellow throwing the starfish back.  Sometimes it is a little girl throwing the starfish into the ocean, sometimes a young man, once even an elder.

I want to be a star(fish)-thrower.  Like that lady I found was for me.

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“…there is love, there is peace in this world…”

~ Guster

Jonah had lots of fun swimming the other day in a pool whose owners had kindly offered us its use while they went away for the weekend.  He wanted to swim sans suit, so we let him.  It was wonderful; he laughed and played.  What should be common is rare and precious.  Here are some pics, and more I took recently, capturing beauty…breathing it…internalizing the warmth of the sun, the smiles of my son… 

I love to take photos and wish I was 1/100th as good as my cousin D.

he loves to swim along the bottom of the pool

~~~ he is a creature of water ~~~

…which was fun to take pictures of too…

I loved these flowers M delivered to my work, surprising me because I have been so sad – they are even more beautiful now that all the lilies have opened their eyes…

I love this plaque my sweet friend D gave me – my favorite thing to see each day when I wake up.

And I love how many of the trains we see have gorgeous graffiti:

And of course I adore Match Game & Richard Dawson, my campy 70s escape-love.

(Here he’s even promoting my profession).

Every time I get knocked down, I get back up again, damnit.  So far I’m doing it, whatever this is that I’m doing. 

Thank you all for your collective conscious loving energies, prayers, and encouragement.
I am literally powered by it all.  I keep going because you push me gently along…so thank you.

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Andy and I Jonah and I left Albany at 6am last Tuesday to bring Jonah to Boston Children’s Hospital for a 9am appointment with a pediatric rheumatologist (because even though we live in the pretty little capital city of New York State, there are zero pediatric rheumatologists here).   Jonah has been limping and was clinically diagnosed with pediatric juvenile arthritis based on other health problems like synovitis in his hip and jaw, and iritis/uveitis in his left eye.

In February of 2010 little boo had an operation on that eye to replace the lens, and they implanted something called Retisert to constantly dispense small doses of steroids locally.  When we got him home and the anesthesia wore off completely, I took a picture of him in his misery.  I guess I wanted to record it while desperate to alleviate it.

I hate this picture.

This was the only time in his little life that he verbally expressed pain to us:  eye hurt, he cried – just once – as if agony could forcibly pull language out of him.

We gave him medicine and I rocked him in my arms, wishing I could fix everything.  Turns out we can’t fix his arthritis either – but it’s mild, they told us, and naproxen should be able to help him with his limping and any associated pain.  They told us neither his eye nor his arthritis would cause his aggressions.  Nobody can tell us what causes the violence exploding like mines inside him, timed to a schedule so erratic it has no business being associated with time at all.

The three hour trip to Boston was okay – we’d given him sedatives the doc had prescribed – and we managed to get him in and out of the short appointment without any major aggressions.  It is undoubtedly an amazing hospital, even aesthetically, complete with musical steps, bubbling walls, and God knows what else we didn’t see because we were in and out of there so quickly.  On the ride home we had to pull over three or four times because Jonah went bezerk.  Andy ended up in the backseat with him, holding him, getting his own arms scratched to hell.  There was virtually no conversation there or back.  We were collectively frazzled – got back into town around 3.

After I dropped Andy and Jonah at the house I went home to my apartment where sweet Jack Ingalls was waiting,

and I lay across the bed, trying to make myself think of nothing.

“The things that I’ve loved; the things that I’ve lost
The things I’ve held sacred that I’ve dropped
I won’t lie no more, you can bet
I don’t want to learn what I’ll need to forget…”

~ Audioslave again, “Doesn’t Remind Me”

I can’t write anything else right now.

I’ll come back.

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I was happy to hear on Saturday morning that Governor Cuomo signed the same-sex marriage bill into law.   2011 is ashamedly late for this to be happening, but at least it finally is here.  Equality and inclusion.  As one comedian said, “Gay people should have the right to be miserable, too.”

So in the afternoon, D came to help me watch Jonah for a while, and we rode him around,  meandering all over God’s creation – past ominous black cloud masses, through driving rain as amazing & short-lived as the taste of Fruit Stripe gum,  finally stopping at one of the Albany Airport’s car turn-offs where you can watch the planes take off and land.  There we saw a huge rainbow in the sky –  D took this pic with her phone and e-mailed it to me; of course it looked so much prettier and vibrant in person…

A rainbow the very first day of same-sex marriage equality in New York State!  God’s nod, I said.  D liked that and posted it on facebook.

Of course we stayed just a little too long for Jonah’s liking and so he started unbuckling all of his harness fasteners, the sound a now-familiar harbinger to his freak outs – this one ending with D and Jonah on the grass outside the car.  Safe hands and body was our mantra, D handling Jonah in the calm, seemingly unfazed manner only one with the expertise of working with these kids can pull off…me standing back, arms folded nervously, not sure what to do – a disempowered, frightened mom.   I got it together quickly enough and was grateful it was D who was with me.  She doesn’t call me on my mental state or make me feel bad about its weakness.   She’s supportive and silent, and so we all just move on down the road.  Sometimes she is my sister and sometimes she is my savior.

I should be used to Jonah’s attacking, but whether it is M or Andy or D in the car with me, when Jonah flips out I go unwillingly to a place inside my head that feels like a little girl place – scared out of my mind, horrified at my child intending to do me and others harm.  I go right into verge-of-tears helpless-mom mode.

Meanwhile Andy walks around with wrists (on both sides) slashed with scratches, making him look like he’d recently, half-halfheartedly, continually attempted suicide with a weak grasp on a plastic knife.

Then:

Daddy?  Huck?  Jonah will say, meekly and sweet, followed once with both skinny little arms wrapping around Andy’s neck, gently and loving -& minutes later those same skinny little arms shooting out to grab/bend/throw daddy’s glasses with one hand and scratch blindly with the other.  That kind of pendulum-swing can mess with a person’s head after a while.  If I feel like I’ve lost it, what must Andy feel?

Then, at times Jonah is pensive, listening, almost Buddha-like in his own little zen way.

When D and I were driving Jonah home after leaving the airport, once in a while he’d sing little snatches of Cake, or Guster, or Paul Simon songs, in tune and perfect rhythm — and D and I would look at each other and say awwww.  He is first a child-demon and next an engaging angel.

By Monday or Tuesday we should know Anderson’s answer. Andy and I are leaving at 6am Tuesday morning to take Jonah to Children’s Hospital in Boston, where he’ll see a pediatric rheumatologist.  I don’t know how in hell we’re going to make it to Boston and back safely, let alone out of the car and into the hospital itself.

As Brett on Match Game would say: Good gravy.   As I would say: shit.

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I used my lunch hour early today and met my mom and aunt T at Wildwood for Jonah’s “moving up” ceremony, which in his case takes on another meaning, as he is also “moving out.”   We sat there amid the mild noise and semi-chaos of a room full of kids with autism, me wondering if they’d get Jonah up on the stage at all.  He wasn’t in the room – they had him out in the hallway and were pulling him around on the scooter.  Three classes “moved up,” his being the last.

The first class was seated on the stage, each child waiting for his or her turn – a miracle, in my estimation.  The teacher handed each child a certificate honoring some particular accomplishment or progress achieved over the course of the year, and announced the gains each child had made.

The next two classes needed aides to guide the kids onto the stage, the crowd chuckling as some kids hurdled the stage instead of walking up the steps.  One cute boy I know bowed deep and got some laughs.  Jonah was the second in his class to be announced.  At first it was like that scene in “The Sound of Music” where they announce the Von Trapp family and everyone applauds, but the Von Trapp family has fled and never appears.  Then they evidently halted his scooter just outside the door and he was escorted in by two or three assistant teachers, who ushered him up the stairs and then snuck him off backstage.

I don’t even recall what they recognized him for.  Best biter?  Champion shit-smearer?

At least he was wearing the Guster shirt I bought him.

Later, back at work, I was melancholy and silent about the whole thing, but then my co-worker, K, came in to ask me how the graduation went.  “It’s more of a moving up ceremony,” I explained.  K’s in a band and I knew what would happen next:  we broke into a spontaneous rendition of the theme song to The Jeffersons:

Well we’re movin on up,
To the east side.
To a deeee-luxe apartment in the sky.
Movin on up,
To the east side.
We finally got a piece of the pie!

Fish don’t fry in the kitchen;
Beans don’t burn on the grill.
Took a whole lotta tryin’,
Just to get up that hill.

Now we’re up in the big leagues,
Gettin’ our turn at bat.
As long as we live, it’s you and me baby,
There ain’t nothin wrong with that…

No, there ain’t nothin’ wrong with that.

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Jonah calls my father “Pa.”  My dad called his grandfather pa, so it’s a tradition passed on.

For Father’s Day, my dad and I went to 9am Mass at the church I used to work for, then out to breakfast and to place silk flowers on his dad’s, his grandfather’s, my grandfather’s, and some other family member’s graves.  My dad wants to tell me their stories, share the history of the Wink family.  I’d like to compile it all into a book with pictures and anecdotes and all the tales he’d love to tell – if only to have it all in writing, to pass down to the younger generations.

I know it freaks him out to see his name and birth date next to his mother’s, but he said he didn’t want her to be alone, and his dad is buried in a different place:

I put small red flowers on my other grandfather’s grave, because they reminded me of how I always called him “poppy:”

I’m not a big ‘cemetery frequenter’ but they are good for reminding me to remember, to keep people alive in my memory.

The next day my dad e-mailed me to tell me what a good Father’s Day he’d had, and how much it meant to him.  It meant a lot to me, too – but my day wasn’t over yet.  M did not get to have his children with him for Father’s Day, so he helped me watch Jonah to give Andy a few hours’ break.  We mostly drove him around.  He was pretty good for us, we saw a train or two, let him direct our path – and request different music:  clapping song?  he asks, meaning Cake’s album, Comfort Eagle, 

  • although he’ll listen to the whole CD, what he really means by clapping song is song #2, a song called Meanwhile Rick James which, without printing up the lyrics, appears to be a song about chicks doing lines of coke in the bathroom at a party while Rick James “takes her nude, and there’s nothing I can do.”   It’s not Sesame Street we’re jamming out to, but all Jonah knows is it has lots of these clapping sounds throughout, and he loves that.

Then we go to see red barn in Guilderland, go up up up to Berne, all around Thatcher Park and Warner Lake, and finally go home, back to daddy and take bath.

It has been another difficult few days since then, mentally, for me.  The fact that in less than a week I will know if and when he will be accepted into the Anderson Center for Autism, the fact that if they can take him it will likely be very soon, and the question marks of how the direct care staff, at any facility, will treat him.  I fully intend to somehow augment their undoubtedly meager salaries, because they do the really hard stuff – they get kicked, beat, hit, scratched, puked on.  They clean shit off the walls.  There isn’t much of a break from it.  I am so grateful for dedicated people who work in this capacity with these disabled individuals.  If I were rich I would donate a few million dollars and demand that it be allocated to staff salaries.

I lost it so ridiculously this morning about the impending surrender of our son, and a whole lot more I don’t want to write about – intense anger directed at me by more than one person, a surreal feeling of floating above this whole situation, the terror of the very real possibility of my inability to come out the other side…that it was very hard to “keep it together” at work.

I bounce back every time, though.  Seeing the graves reminded me to embrace the good, even if I have to draw it from my past for a while – my sweet, cuddle-boo…

…for soon enough it will all be gone — for all of us — all the fear, the worry, the joy and pain, all of it gone.

Unlike Trix, death is for everyone!

– – –

“Live in the now!’  ~Garth, Wayne’s World

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