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womb magic

Posted in Anderson School, autism, tagged , , , , , , , on August 3, 2011| 6 Comments »

When Jonah was a baby, I wrote him some poetry.  My best friend Gina shot and killed herself when boo was just 7 months old, and in my grief I went on a writing frenzy.  They say the writing saves the writer and I know they’re right.

I need to write my Capital District Parent Pages article for September; it is due soon.  What to say?  I will submit it before he is gone, and it will be published and distributed after he is there.  I may go back in time, like I did for my July article, where I spoke mostly about his natural swimming ability.

I have been re-visiting his past – my pregnancy, his babyhood, everything that led to now.

There is a poem I called Womb Magic – and parts of it again ring true; eerily similar to now.  After wanting a waterbirth, I had to have a c-section; it was the opposite of what I’d wanted, just like this.

I need more magic, more faith.  More freeing of my mind from worry.  God help me but as the days draw to their inevitable beginnings and ends I feel rising panic in my throat, my gut, my heart.  Please, God, help me.  Help Andy, help Boo.  Please help me.  Please and thank you.

I am so grateful for everyone who reads, who reaches out, who understands, or tries to, who reassures and cyber-hugs me.  I am grateful I have this place where I can come and bitch or ponder, express the pain or the wonder or the anxiety.  Shaking, I continue because there is no choice but to continue.

In the mornings I listen to beautiful music that carries me away – Mozart, Vivaldi, Beethoven, Rachmaninoff.  I let it enter me and soothe like balm.  On the way to and from work I play Guster, LOUD, singing songs I know so well they are a part of me now.

Anyway, I thought I’d share the poem, for ‘cooking a baby’ isn’t easy – and may well be compared to magic – just like letting go of one (who seems like my baby, even though he’s 9) isn’t at all easy.

Womb Magic

Two rehearsals went awry.

First I stumbled, dropped the wand
I heard the heckling audience’s hiss

and then onstage I felt
I froze
I felt
unsympathetic ruby spotlights
stealing all the magic words
I ever knew.

Of course there is a trick to it.

I was under the illusion
I was under
it
would be effortless, the show’d go on
without me after all it was
a commonplace performance for the man
behind the curtain, for all the men
behind every curtain

and I said
if I was not the world’s best
well I could always adopt another occupation
I could take on an apprentice I could
quietly retire

but then
in time
at last
suspending
disbelief

I conjured you from soul and cell and bone
with nothing up my sleeve
in one swift sleight of
hand

and pulled,
to rave reviews,
a living breathing rabbit
from an enchanted empty hat.

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the august article

Posted in Anderson School, placement, tagged , , on August 1, 2011| 8 Comments »

I’ve been writing monthly articles in the Capital District Parent Pages for almost a year now and the August column was the hardest one I’ve had to write yet.  How do I say what’s happening?  I edited it about ten thousand times.  The issue came out today.  For those of you who don’t get the Capital District Parent Pages, here’s what I said:

Normal is a Dryer Setting

August 2011

Well, here we go.  Sometime during the week of August 15th, Andy and I will drop Jonah off at an educational residence for children with autism; he’s been accepted in both an appropriate house and classroom there. 

It’s a beautiful campus.  Really. The classrooms are cheerful, the staff is engaged, the kids look happy, and the children’s residences are real houses – immaculate duplex-like homes where Jonah will even have his own room.  There’s a recreation center and a big pool, and Jonah will be able to go out into the community, to movies and restaurants, playgrounds and museums.  He can’t do those things anymore here.  I know in my heart that Andy and I can’t provide the therapies he needs; this is Jonah’s chance to truly thrive.

I must sound like I’m trying to justify our decision, to convince you we’re not throwing our child away.  The truth is I have no idea how to do this thing.  I have to believe Jonah will be protected and happy.  I need to imagine him learning and laughing.  There is no other option if we are to drop him off and drive away.   In the meantime, I cry.  I have nightmares, nagging thoughts of negative scenarios.  My head fully understands the necessity and wisdom of moving him there, but God, my heart.  Each day is another day closer to that inevitable day, and my heart mourns.  I’m grieving for him even though he isn’t yet gone.

I’m going about it all wrong, I know.  What you focus on expands, they say, so I’m going to stay focused on the good stuff – like giggling when Jonah, apropos of nothing, invents a goofy phrase.  Or hearing him shriek with delight when his lithe body hits the surface of the swimming pool.  And chasing him around his bedroom with a towel to wipe away bath bubbles still clinging to his body.  Watching him sleeping, tranquil, his breathing slowed and deep…pressing small kisses into his cheeks…inhaling the little-boy-scent of his tousled hair. 

I‘ll concentrate on shopping for things he needs for his room.  I’m splurging on the best of everything there is – Egyptian cotton sheets and thick, luxurious bath towels in bright, primary colors.  A late-afternoon-sky colored comforter with a floor rug to match.  The softest blanket I could find.  I want him to be comfortable. 

I’m making him photo albums he can’t rip and filling them with pictures of all his relatives, the people and animals he knows, and the places he’s been.  I want him to remember his loves.  I want to be able to explain to him what is happening: mom and dad will be back, and this is a new and exciting place to grow, play, and learn.  I’ll write a social story – something often utilized to explain a concept to kids with autism using short sentences accompanied by pictures. 

Everything changes.  This is a new chapter in a new book.  Maybe even a whole new library.  I’m grateful to everyone who has made places like this available – and so much better than they once were.  I’m grateful to those families who’ve endured tragedies and had the courage to turn them into advocacy for things like access-to-information laws and changing the system for the better, to protect my son and others like him.  I’m grateful I live in a country where services are provided for people with disabilities, and a state in which lawmakers now recognize the importance of ensuring safe educational residences for people who need them.  I’ll never complain about taxes in New York again.

Still, though, it’s all so surreal and unthinkable.  I want to be a parent advocate for other people going through this process.  If I can be a comfort to just one other family, it will help.  The knowledge that you are not alone in something is invaluable; I know I’m buoyed by the parents I’m in contact with who’ve had to do this too.  

As Jonah goes away, I will be visiting him as much as possible, ensuring he is happy and safe, and loving him with more strength than I ever have before.  So goodbye for now, little boo.  Once you are in the hands of a round-the-clock team of specialists, you will bloom into the best boy you can be.  Your mama knows you are bright and silly, fun and eager to learn.  You show ‘em, sweetheart.  They’re going to love you.  I just know it.

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counting, breathing, bye bye mama

Posted in Anderson School, autism, doctor, placement, swimming, tagged , , , , on July 25, 2011| 7 Comments »

“For things to reveal themselves to us, we need to be ready to abandon our views about them.”
— Thich Nhat Hanh (Being Peace)

Thank you for everyone who voted for me – I seem to be see-sawing back and forth between #20 and #19, and I don’t expect to stay this far up on the list, but I cracked the top 25.  I appreciate your votes, all of you. It’s funny – Elizabeth Moon has a blog on the list (I haven’t looked at it yet) – but she wrote a fantastic book about autism, The Speed of Dark, set slightly in the future, which gave me the idea for the name of my blog; one of her characters said it in the course of a conversation.

So I am relentlessly counting.  Twenty two days – three weeks from tomorrow – we pack up Jonah and all the things they’ve asked us to bring for him, and we drive him away to live at an educational residence for kids with autism.  It’s like a movie I am watching, or a book I forgot what chapter I’m on…a dream I am consciously trying to end.  Sometimes I literally can’t even breathe… I can feel the pressure in my lungs, my heart, my bones, my center.

Tomorrow Andy and I go for our free consultation for divorce mediation.  M is tired of me being miserable and often “snippy” as he calls it.  He helps me watch Jonah 4 times a week and it is wearing on him – he has his own children and he wants time to relax.  My sadness wears on him too; he says I am not the same person I was.  That it true – I am not and never will be again.  It is not his fault that I am a mess.  I wear this like a cloak and I shed the cloak sometimes but then I wrap it around me again.  How many metaphors can I use to describe this kind of helplessness, this form of pain?

Maybe I should be alone.  Maybe I should be done.  The counting won’t stop, this ticking ringing in my ears (I go next Friday for a hearing exam but it won’t stop the clock).  I hold my breath and hold my breath and pray I don’t burst out crying at the gas station or the grocery store.

I try to hold my son tight and he says bye-bye mama, bye-bye mama…

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i will always be your mother

Posted in Anderson School, autism, behavior, placement, swimming, The Anderson School for Autism, Uncategorized on July 19, 2011| 3 Comments »

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.  Worthless.  You 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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the necessary path

Posted in Anderson School, autism, behavior, doctor, placement, The Anderson School for Autism, Uncategorized, tagged , , , , , on July 14, 2011| 4 Comments »

“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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the star thrower

Posted in Anderson School, autism, swimming, tagged , , , , , on July 10, 2011| 9 Comments »

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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god’s nod & anderson’s answer

Posted in Anderson School, autism, behavior, doctor, placement, Uncategorized, tagged , , , on June 26, 2011| 3 Comments »

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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death is for everyone

Posted in Anderson School, autism, placement, Uncategorized, tagged , , , , , , , on June 22, 2011| 5 Comments »

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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no fun day for you!

Posted in Anderson School, autism, behavior, placement, tagged , , on June 14, 2011| 3 Comments »

Today’s the day the Anderson Center for Autism is coming to Wildwood to evaluate and observe Jonah.  In a few days or so we should know (a) whether they’ll take him and (b) when they’ll take him.  Then, maybe, we’ll have three residential schools from which to choose. 

Today is also “fun day” at Wildwood, but Andy has to pick him up as soon as the Anderson people leave because Jonah’s not allowed to participate in the fun day activites; he’s too violent.

While I understand their decision, it upsets me that my little boo can’t enjoy whatever the other kids get to participate in…plus it makes Andy’s unpredictable day with Jonah that much longer.  The irony is that Jonah had a very good day yesterday at school, with barely an aggression to speak of.

No fun day for you!

The blessing is that Jonah likely won’t care.  A car ride, a bath, grandma, and some peanut butter roll will, perhaps, suit him just fine.  I hope.

But it makes me sad all the same.

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something fishy

Posted in Anderson School, autism, behavior, doctor, placement, Springbrook, The Center for Discovery, Tradewinds, Uncategorized, Wildwood, tagged , , , , , on May 19, 2011| 6 Comments »

About 3 or 4 weeks ago I decided to order some Fish Oil chewables for Jonah (100mg a day).  I’d read some articles like this one saying most people don’t eat enough omega-3 fatty oils anyway, and there may be some basis to the theory that the Fish Oil supplements may alleviate symptoms of autism: (from http://autism.healingthresholds.com/)

Some scientists have proposed that autism, dyslexia, attention-deficit/hyperactivity disorder (ADHD) and dyspraxia are a related group of neurodevelopmental disorders that are caused by problems in the metabolism of EFAs (3, 12, 13). The idea is that, for unknown reasons, the brains and bodies of individuals with autism and related disorders have problems converting the EFAs from foods into the forms that are necessary for many biochemical reactions (7). In addition, omega-3 fatty acids seem to be lower in individuals with autism than in others (9, 14).

Both of the omega-3 fatty acids DHA and EPA have been found to affect many aspects brain function (1, 3). Specifically, changing the amount of DHA and EPA in the diet alters the amounts of certain critical genes in the brain, at least in rats (15). In addition, one study found that giving animals a diet with a ratio of omega-6 to omega-3 EFAs of about 1:4 improved experimental measures of cognition in the animals (1). Finally, mood and behavior problems in humans have been linked to a lack of omega-3 EFAs in the diet.

So I figured 100mg a day is innocuous enough (esp. since the kids in the studies cited were given 1-3 grams a day) and may even help his growing brain a little, and so he’s been chewing one daily along with the Risperdal ever since.

Then, on Monday and Tuesday, miracle of miracles, Jonah had zero aggressions at school.  This hasn’t happened in months – maybe a year.  I’ve lost count.  Of course I hear the words of doc Reider echoing in my head:

“Correlation doesn’t necessarily imply causation,” and I know intellectually that 100mg of Fish Oil chewables for 3 weeks has not caused this two-day no-aggression anomaly, but the mother in me couldn’t help but hope, just a little, that I’d hit on something.

Then, on Wednesday, I went to Jonah’s CSE meeting at Wildwood.  I always hear stories from autism moms online whose CSE meeting experiences play out like horror stories, where parents feel ganged up on and must advocate, fight, hell, even hire an attorney to be present – to ensure their child gets the appropriate supports and services.

Maybe our experience was not like this because Jonah is undoubtedly autistic – it isn’t as if he is on any kind of borderline between autism and neurotypical (NT) – and now he is so obviously in need of residential educational placement.  Maybe we’re lucky to have such an enlightened team of teachers and special education school district administrators.  For whatever the reason, I don’t dread the meetings and have never come out of one feeling like Jonah wasn’t given every possible support, service, and consideration.

One thing I learned is we need to keep Jonah on the waiting lists of all the schools, so I called both Anderson and Tradewinds and asked them to put him back on their lists.  I guess I was wrong about the fact that you can’t keep your child on all the lists.

The thing is, November is a long way off, with 3 weeks of time at the end of August and beginning of September between the summer program and school starting up again.  Tradewinds or Anderson could have a spot before that 3-week hell descends upon Andy and me (especially Andy), and since we liked all 3 schools, we decided to take the first spot that has an opening.

I think.

Once again, my time line is gone.  Shit, I didn’t like having it, anyway.

At any rate, the folks from The Anderson School are thankfully willing to come and observe/evaluate Jonah in his school environment, and it’s going to happen on June 14th which is, among other things,

  • Boy George‘s birthday
  • my Aunt P’s birthday (I call her Tree-Shee)
  • Flag Day
  • and the day I found out I was pregnant with Jonah

Not that any of that necessarily means anything, but I still like that it’s happening on June 14th.  And so far as my Fish Oil theory is concerned, Jonah did only have one aggression both yesterday and today, but they were each “very high intensity” according to the dreaded log book, meaning they are aggressions requiring two or three staff members to remove him from the classroom and into the “safe room.”

The residential schools don’t have safe rooms.  They have the staff and capability to handle whatever is happening right then and there, ostensibly.  I don’t know.  One even toilet trains the kids immediately.  It’s all done with ABA, something I was never really on board with, but now of course I question my original stance.  All the residential schools we’ve toured use it.  It works.  All the kids looked happy, the staff dedicated and engaged.  I’m not looking for Jonah to be Einstein or Temple Grandin;  I just want him to be happy, as independent as possible, and able to learn and grow.

My problem with ABA was formulated in 2006, when Jonah was 4.   I think it was born from the hope/assumption that Jonah was going to end up higher functioning by now than he turned out to be (and certainly not aggressive at all).   I thought, if taught through ABA, he’d just be a robot…trained to act, speak, and look normal.  It seemed horrifying to me.  Something Orwellian.  But I had the confidence of a woman whose child, though autistic, was at the very least not a danger to himself or others.  He’d had every modern advantage a child with autism can get.

After all, doc Reider had noticed something was up with Jonah when he was just 6 or 8 weeks old:  our boy was staring at lights, not faces.   (In our infinite ignorance, Andy and I had already nicknamed him “Moth Boy.”)

So we stayed on top of the situation, got him early intervention before he was 19 months old, and enrolled in Wildwood School full-time just before his third birthday.  We thought we were doing the right thing.  If we had got on board with full-time ABA all along, would he be better than he is today?  I don’t know.  Who knows anything when it comes to autism?

If you’ve met one kid with autism, you’ve met one kid with autism.

It’s a puzzle inside a mystery inside an enigma inside a matrix of love, pain, frustration, guilt, helplessness and anger; amazement and joy.  You take wrong turns and make mistakes.  You come to question everything.

Autism is the agnosticism of impairments;

you have to be okay with “I don’t know.”

And so we sally forth.  Andy’s sick with something…the flu?  Walking pneumonia?  He managed to work today.  And I’m tired.  Lots of meetings today, a ton to do at work.

Time for Match Game.

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