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For the September issue of the Capital District Parent Pages, I thanked Wildwood School.  I will never be able to repay what they have done for my son and my sanity.  Always I felt supported.  Always I knew they were doing their best with Jonah, with all the kids, treating each like an individual.  The school year has started at Wildwood and Jonah’s not there. It’s surreal.

For those of you who don’t read the magazine, here’s the article I wrote:

Normal is a Dryer Setting

September 2011

Autism: When your child is diagnosed, you’re abruptly initiated into a fraternity of parents, all asking questions for which there are no straightforward answers.  Before you have a chance to fully comprehend what’s happening, you’re hurled into a world of acronyms, specialists, and an array of treatments – most different, some opposed to one another, and none guaranteed to alleviate the symptoms of this mystifying condition.  It’s no coincidence that the autism awareness ribbon has an array of colorful puzzle pieces on it.  Like a rainbow, the spectrum of autism spreads across the population and manifests itself in a million different ways.  If you’ve met one child with autism, you’ve met one child with autism.  And yet their individual colors are beautiful and bright.

We are lucky; Jonah was diagnosed and received special education intervention services early.  Just before he turned three, I visited special education schools all over the Capital District and was especially impressed with Wildwood School.  When we enrolled him, we had no idea how lucky we were to snag an opening – oftentimes there’s a waiting list.

In the 6+ years Jonah’s been at Wildwood, we consistently encountered teachers, social workers, and staff with an amazing dedication to the nurturing of each individual’s learning potential.  We watched as his speech teachers worked tirelessly to draw language and other communication from him.  We loved hearing about his love of rhythm, music, and performing.  To this day he can speak only in short phrases, but can sing whole songs  – usually Guster (since that’s what mama plays in the car all the time).  We laughed as he once stole the mic (and the stage) at an annual concert amid the mild chaos that’s normally the backdrop for these events.  Nobody minds.  There is solidarity there.  We all understand the shrieks, bouncing, flapping, and whatever other mayhem.

Every year Wildwood has a “moving up” ceremony for each class.  This year, Jonah’s “moving up“ ceremony was also a “moving out” ceremony; instead of returning in September, he’s moved to  residential educational placement an hour and a half away.  At first I had no intention of attending the ceremony.  For one thing, it’s painful emotionally, and I also figured he’d go all violent on someone/everyone, hurting people, screaming, caught and restrained.  But then I decided, if the people at Wildwood are determined to include him, I can’t ignore their efforts.  And so I decided to go.  Not surprisingly, they had a plan for Jonah.  Until it was his turn to walk onto stage, they wheeled him around in the hallway on his “scooter,” keeping him calm.  At the last moment they got him off the scooter, opened the auditorium door, ushered him through, and guided him onto the stage, where he was handed a rolled certificate. The MC gave him a verbal accolade, best challenge of the summer or something I don’t remember.  I was too nervous.

I’m so glad I went.  I got two decent pictures of him accepting his “diploma” with a look of confusion on his face.  In one of the pictures he’s looking right at me; I can almost hear him:  hey mama?

On the way home from the ceremony, I realized what makes Wildwood such an excellent school.  When things seem hopeless, they hope anyway.  When there is no way, they find one.  If a method doesn’t work, they try another.  Determined to nurture the children and young adults in their care, Wildwood School is a place where individuals are guided to reach their greatest potential.

I will always be grateful to Wildwood School for advancing their vision:  …”a world that embraces a fundamental respect for ALL people, their strengths, their uniqueness, their creativity and the infinite diversity that we each represent.”

Thank you, Wildwood.  May your kindnesses come back to you a thousand fold.

Love,

Jonah Krebs and his family

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I’m at the point where I just want it to be Tuesday.  I want to go, get it over with – to do it instead of dread it.  I’m tired of being sapped of life and joy, breath and motivation.  It’s starting to feel like I’ve chosen this misery.

Today was Jonah’s last day of school at Wildwood. Thank you so much, Wildwood.  No words can express our appreciation that there is such a wonderful school; Jonah was so lucky to be there for 6 years.

I have so much to be grateful for – there are so many people who care.  Yesterday I got a package from a business networking guy I know.  Inside was a card from him and a beautiful hand-crocheted twilight-blue stole from volunteers at his church.  My hands shook as I read his card and the church’s handmade card and message.  Feeling something almost like shame, I clutched the stole and cried into it.

Then, a lady I am in contact with only by phone and e-mail sent me a long letter about how her son has autism too – something I’d never known.  The letter was full of encouraging, positive sentiments and suggestions for Bible verses for me to read.

My friend H continues to generously offer her pool, and friend K gave me hope – and e-mails me SNL skits to make me laugh.  M encourages me with loving words, and today he also e-mailed me a verse:  Jeremiah 29:11:  “For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”  My aunt texts me messages telling me how much she loves me, to call her anytime, that she is praying for me.  New online friends and past acquaintances, family, friends, everyone envelops me in love and light.

Seems like Divinity is yelling at me from all directions:  Have faith!  Have hope!  I’ll take care of everything.  There is no denying the push of the divine – it’s all around me.  I’m grateful for it.  Every morning I wake and cry, my throat so tight I am almost gasping to breathe –and as the day progresses I become calmer.  I can smell the rose and blow out the candle, and there are long moments of peace.

The push of the divine is gentle but firm, like a tight hug.  I am hugging back, hanging on.

A few more pictures:

happy boo

chillin’ in the pool

water boy

…baby boo,

Mama loves you.

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In preparation for Jonah’s new chapter in life we are (hopefully successfully) going to give him a buzz cut tonight.  Sitter/cousin D is coming over to help Andy and me- and with the 3 of us we should be able to get ‘er done.  Then, if it clears up and is nice later, D and I will take him to friend H’s to swim. 

I am starting to think ahead, beyond the time when Jonah goes away.  Before this I was simply thinking of it as a doomsday clock – that everything would come to an end on August 16th – that there was no point in thinking beyond this day or its inevitable heartbreak (and relief?).

My fantastic therapist, Dr. Alex, mentioned that I maybe should make a (real or metaphorical) social story for ME.  I’ve made one for Jonah and something like one to send to his care workers, but one for ME might help me prepare emotionally – to help me not block out, ignore, or go numb about all of this, which are the defense mechanisms I have been using.

Jonah has been awful at school.  Where usually he would be at camp during summer school, this year he has been disallowed (and, unfortunately, rightfully so) because of his behaviors.  I’m so happy the Anderson School has such a big, nice pool so he can swim.  At Wildwood he has been what they euphemistically call “smearing” almost every day.  YUCK.  Then they have to shower him and clean all the shit off him, the walls, themselves – and probably endure scratches, bites, and kicks in the process.  The dedication of these direct-care workers amazes me. 

It would be one thing if they were making the money they deserve, but the money just isn’t there.  I wish they could have a capital campaign earmarked specifically to raise salaries of these incredible individuals.  I am so grateful for them I want to fall at their feet and sob out my thanks, in my usual over-the-top style.  Instead I will make them gift bags and pray they’ll know, somewhere in their hearts, how much they (and Wildwood) have meant to us and to all the children who need them.  What a wonderful school. 

Here’s Jonah learning emotions, a year or two ago, with his speech teacher, L.  In an earlier post I put up a picture of “excited face.”  Here is “mad face” :

If Anderson is anything like Wildwood I will be so relieved. 

I have received ever-increasing support from everywhere – people e-mailing me, leaving comments here – people who don’t even know me, or who knew me from my childhood.  People I’ve met both virtually and personally who’ve been through this or are going through it…we’re like Sgt. Jonah’s broken hopeful hearts club bandI am not alone.  I am not alone.  It is my mantra and I cling to it like a proverbial rope you climb to get up and back over the cliff.

I yearn for Gina, for she was my sister-in-spirit.  I yearn for siblings, for I have none.  But I don’t want to yearn.   I don’t want to worry.  When I don’t want to worry I think of this Bible verse:

“Look at the birds of the air; your heavenly father feeds them. Are you not much more valuable than they? Matthew 6:26

Stay focused, Amy.  Have faith.  Stay busy, stay optimistic, stay positive. 

And don’t forget to breathe.  When I want to remember to breathe I think of HH the Dalai Lama:

Practice for the New Millennium by the Dalai Lama

1. Spend 5 minutes at the beginning of each day remembering we all want the same things (to be happy and be loved) and we are all connected to one another.

2. Spend 5 minutes breathing in, cherishing yourself; and, breathing out cherishing others. If you think about people you have difficulty cherishing, extend your cherishing to them anyway.

3. During the day, extend that attitude to everyone you meet. Practice cherishing the “simplest” person (clerks, attendants, etc) or people you dislike.

4. Continue this practice no matter what happens or what anyone does to you.

These thoughts are very simple, inspiring and helpful. The practice of cherishing can be taken very deeply if done wordlessly, allowing yourself to feel the love and appreciation that already exists in your heart.

I’m trying; I’m learning.  I’m grateful. 

I just hurt.

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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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This is the part of the story where Jonah falls overboard and is swallowed by the whale.

There isn’t much to say except that it has gotten worse, and worse again, and worse some more – today sucked blah blah blah and I’m so sad blah blah blah.  I don’t know how anyone can stand to read this blog anymore at all.

Jonah’s almost guaranteed to attempt to seriously hurt his father, me, anyone around him – not once, but several times a day, wreaking a path of destruction behind him – lampshades crumbled, Andy’s now duct-taped fan knocked over, eyeglasses scratched, coffeemaker smashed & broken, dinner swept off the table to spray-bomb the kitchen in one swipe:

`

On the pictured occasion Andy had called me for help.  “I can’t leave him for two seconds,” he told me.

So I came over and cleaned the kitchen (after taking this picture).  I picked up the obviously just-delivered rice, chicken, sauces, and dumplings, wet-swiffered the floor, and vacuumed the landing rug/steps… my heart pounding, my mind processing the scene, adding all these details to the new normal, a new ramped-up constancy of Jonah’s violent aggressing.

After I had cleaned, we sat together on Jonah’s floor for a few minutes while Jonah sat on his bed, having been banished there after the kitchen scene.  I asked Andy if he wanted me to go get him more food.  “No,” he replied flatly. “I ate.”  (which I knew was likely a lie).

“They’ll help him at whatever place he goes to,” I told Andy quietly.  “He’s going to get better.”

“You think so?” he asked wearily.  “I think he’s just broken,” he mumbled, lowering his head into his scratched-up hands, running his scratched-up hands through his rumpled hair.  Andy sits with his head in his hands a lot.   I’m usually in tears.

During some car rides the three of us have taken since then, Jonah’s managed to escape his harness in seconds, throwing himself up into the front seat to grab a handful of hair, scratching, hitting, and kicking whatever body part of ours he can reach.  Luckily we are usually already pulled over waiting for train, or I have been able to pull over quickly so Andy (or M, when he and I are the ones driving him) can climb in the back and hold down a fiercely struggling Jonah who is head-butting hard, kicking hard, hitting hard.  Scratching to wound, to make you bleed.  No holds barred.  No empathy.

It is more frightening than anything I’ve ever encountered because I have no idea how to fix it, how to help him, how to pull us all up and out of this.  No wonder I watch Match Game and bead necklaces when I am not watching Jonah.  I need mindless 70s television, ritualistic bead-stringing, care-package construction, and Guster-blasting.  Andy is writing, which is good.  At least there is a fantastical creative outlet for him too, though I’m sure he squeezes it in in two-minute intervals if Jonah is home.

At school there are days when Jonah aggresses and then, as encore, smears his poop on the safe room wall – and he often aggresses 9-10 a day (each of which consists of an episode of a dozen or so of clustered individual attacks, they tell us).

I’ve said this before but it bears repeating that we are really, really grateful for Wildwood, whose teachers, social workers, and other staff have continued without fail to support our family and somehow manage Jonah day after day, week after month.  I am grateful for Andy, who is somehow handling this thing.  The title of my blog may be normal is a dryer setting, but our dryer’s in serious fucking disrepair. 

We want Jonah to get the help he needs, and as soon as possible.  Later this month we’re taking him to Child’s Hospital in Boston (somehow), and we’re going to once again ask his psychiatrist for a new med to try.  The psychiatrist is retiring this month, so maybe we’ll get a new one who’s fresh out of school and fired up to help usIf not, I’m going doctor-shopping.

I’m refocusing my thoughts and actions in an unusual but positive way, because it’s all I can do to keep it together.  But most of time I’m tired and bitchy.  I haven’t felt much like writing, or talking to anyone, or going anywhere, or doing anything at all.

I guess these are our days inside the whale.

“Then I said, I am cast out of thy sight, yet I will look again toward thy holy table.”
~ Jonah 2:4

That sounds to me like I know I’m completely in the dark, but I’m going to hope anyway.

“Love and blessings
Simple kindness
Fell like rain on thirsty land
Fields and gardens
Long abandoned
Came to life in dust and sand”

~Paul Simon, Love & Blessings from So Beautiful or So What

Okay, then.   Hope anyway.

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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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For a few years I’ve been meaning to plant tulip bulbs in our yard, and last fall i finally did – all along the front of the house and in a circle around the lamp post in the front.  But I do not have a green thumb nor do I know much about planting tulips – how deep to plant them, which end up, all that.  So of the two dozen or so I planted, only four came up…three multi-melon-colored ones in the circle around the lamp post,

and just one in front of the house, as if summoned by the Buddha my cousin D gave me.

Along the whole length of the front of our house, only one soft-red tulip stood loyally beside the Buddha.

And it bloomed before the others, enhancing the visual impression even more.  However, Buddha’s tulip died first as well.

Is there a moral to that story?   I”m going to call it a lesson in impermanence.  Just about everything is with Siddhartha.

In following the theme of our parable, Andy and I toured The Anderson Center for Autism today, accompanied (and driven there and back – thank you!)  by two of the folk from Wildwood.  Andy and I loved the place.  I took about fifty pictures, even of the bathrooms (with bathtubs!  Jonah’s favorite!) and toilet stalls to show my immaculate mother who’s terrified these “homes” are urine-stinking, dim institutions like the one where Salieri moans and raves in Amadeus.

I tell you it all looked brand new.   The school, the houses, the whole place.  I think the oldest building was built in the year 2000.

The kids we saw looked happy and the staff looked energized.  They have a pool and every kid almost always gets his/her own room; there’s art & music & outings, a special building with rooms you can reserve to visit with your child, an auditorium, gymnasium, 3 playgrounds, and on and on.  When they were building the school itself they even asked adults with autism to give them guidance in designing hallways and choosing colors.

Of course I cried at one point but I am getting better at getting through it and I do hope they can take him.  I believe he can get better at a place like this.  Now we have to wait to see if they will evaluate him, and if they will we have to wait to see what they say, and all the rest of the waiting game we’re already playing with Springbrook and Tradewinds.

I could go on about it all but I’m tired.  I’m always tired and drained (or maybe strained) emotionally every time we ride back from one of the tours; I do everything I can to avoid thinking about what it is that we are doing.

I chat and laugh with the folks from Wildwood, talk about how beautiful that area is – near Rhinebrook, Red Hook, not far from Kingston or Woodstock.  “It reminds me of Saratoga,” I am saying.  This is all so surreal, I am thinking.

To stop the surreal from sifting its way too deep into my head, I watch out the windows instead at the calm blue sky, the gentle sunshine – the new green leaves and almost-past-full-bloomed tulips – – like Buddha’s tulip.

Impermanence.

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