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Posts Tagged ‘Anderson Center for Autism’

Yesterday Jonah moved into his new residence at Anderson, one with kids a little more his age.  They’re really great about preparing the kids for changes by using social stories and acclimating them little by little to new environments.  Already this morning I’ve heard from both his new residence house manager and his behavioral specialist.

In part, here was some of what they reported to me:

Jonah was in his room and then came out for meds and snack which he did well with. He sat at the table and ate chips. Once he finished he paced around the dining room for a bit then went into the kitchen and tried several times to make himself a peanut butter and jelly sandwich. Staff continued to assure him that dinner was soon and he was compliant with putting the items away. Rodney then had him doing some cleaning tasks and he laughed and giggled as he sprayed the cleaning bottle on the table.

 He continued pacing about the house a bit and then eventually went into his room with the door open. After about 10 minutes I went in and he requested Adele and back scratches!!  He seemed calm and content.  When I left he was still in his room. 

That sounds good to me.  They suggested I get him an area rug for his room, but he’s all set with bedding and, thanks to my mom and dad, all the clothes, coats, and shoes he needs.  I guess he’s falling asleep in school today so maybe he didn’t sleep so well last night.  Either way, I’m happy to hear that he’s doing okay.  I’m so grateful to the peeps at Anderson – all of them, from the administrators to the teachers to the caregivers to the nursing folk.

I am much calmer than yesterday.  Sometimes things just aren’t supposed to happen; it’s hard to discern, sometimes, what to let go and what to pursue.  After making a bunch of phone calls yesterday about Jonah and hearing stories about other schools and possible scenarios, it started to feel like I need to back off and chill out.  Jonah is in a great place with wonderful people who care about him, and that’s more important to us than I can ever express.

In the grand scheme of things, we are lucky and blessed.  What you focus on expands, I always say, so now I’m choosing to focus on the best of what’s here and what’s possible.  I’m looking forward to seeing Boo’s new residence and getting him some things for his room – a soft rug or some big pillows.  I’m feeling okay.  We’re all going to make it through this, however we can.  Thanks again for your kind words and encouragement.  It means a lot!

Some better (happier) recent photos of Jonah:

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Deep breath.  Onward…

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I want to start a whole new blog, but life gets in the way.  Then again that’s not true either – we have time for what we prioritize, whether we admit it or not.

To be sure, my life has gotten busier.  I’m working a couple different PT gigs now and I just accepted a big writing project from Pearson, which will throw the rest of August into deadline mode.  But that doesn’t excuse me from disappearing; one does hate a dead blog.

So I’ll be writing more here, with all the other work going on, even if the new blog(s) of mine must wait.  Boo does take top priority, after all.

Sigh.  It’s been a summer of disinterest for Jonah.  Against all reason, he seems to have lost his love for the pool, although I’d bet money he’d jump in the new swimming hole/waterfall area I found.

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I mourn the loss of my little boo-fish and hope he’s not gone for good.  I wish I could take Jonah to the ocean again.  He was in his element there, and at places like the waterfall at Hyuck Preserve.  Maybe he just wants a natural water source.

Nowadays, when my mom and I drive down to visit with him at Andy’s apartment, he mostly asks for car ride.  Even wanna take a bath has fallen to the dominant desire for car ride.  I understand; he doesn’t get a lot of car ride at his residential school, unless they’re taking the kids bowling or something – and then he has to share the backseat.  Hell, he won’t even share the backseat of the car with grandma unless we’re on the short ride from his residence to the apartment.  He wants mama in the front and no one in back.  Sometimes when he wants car ride he’ll simply say mama in the front?

We’ve learned his language well.  We know what he wants.

Car ride is a specific loop Andy invented which passes through and around some of Rhinebeck’s historical sites.  Usually at some point during the ride we stop at a gas station where we let Jonah out of the car, walk with him to the mini-mart inside, and allow him to choose a treat (like a bear claw or a donut).  The lady in there knows us now – she’s friendly, and nice to Boo.  He nearly always agonizes between two or more treats before deciding on something.  Then, once in a while, he’ll ask to go back to the apartment.  Most of the time he just wants another loop.

Andy gets Boo out to go for a walk, at least.  We like to take him to the park where daddy pushes him on his favorite swing for a while.  After that we walk down the path to a school’s athletic track, where I try in vain to get him to race me.  He walks and cavorts at his own pace.  Yet all of it is dependent on Boo’s caprice, which he makes perfectly clear each time.  No park!  No park!  he’ll say, and then we don’t even try.  It wouldn’t be worth it to force the issue.

My mom always brings delicious sandwiches on croissants.  Jonah will eat one, after a fashion, by pulling it apart, re-arranging the pieces, and putting it all back together Frankensandwich-style.  Yesterday he wanted a frozen dinner as well – chicken parm.  We indulged him.  He doesn’t eat anywhere near the whole thing, and his choice of “dipping sauce” might gross you out, but I did catch the experience on video.

The story of this day has a really shitty ending, so maybe I’ll just skip right to that part now and make it the middle.

When my mom and I left to go home, Andy and Jonah were having quiet time on the big blue bed.  It was a great image with which to leave them:  Jonah and his daddy lying together… Boo snuggling in for a hug.  Mama leans over for soft kisses, inhaling the top of his head.  Goodbye, precious boy.

Off my mom and I go to our innocent oblivion, arriving back in Albany, continuing on with our days, a warm feeling nestled inside us because Boo was so very happy and good.

Later Andy called me and filled me in on the rest of the afternoon.  When it was time to bring Jonah back to his residence, Andy promised him 2 car ride loops.  Evidently Jonah wasn’t counting because when Andy announced loop 2 was done, Boo insisted this was not the case.  And the manner in which he insisted involved a quick Houdini-esque harness escape followed by climbing toward the front of the car, grabbing Andy’s hair, and yanking it — hard.  I didn’t ask whether Andy at least had time to pull over first.

And I didn’t have to ask what happened next — I’ve seen it go down so many times I can watch it like a film inside my head.  Jonah pulls hair with Herculean strength.  A wrestling bout inevitably ensues – Andy trying to keep Jonah managed and safe while protecting himself.  Andy is still the undefeated champion in these matches, but he comes away bruised, sore, and likely disheartened.  We know Jonah doesn’t always love going back to his residence, and sometimes he cries, but there also have been times when he asks to go back.  It’s a crap shoot what you’re going to get on any given day.

When Andy tells me the story on the phone it’s with a calm voice, relating the facts in a tone that seems almost rehearsed.  Not fake or phony.  Just repeated too often, maybe.  Perhaps a little hardened by the time of it.  Frequency x the passing days/weeks/months = A dull and radical acceptance of a fact.

Like at the airport:  The moving sidewalk is coming to an end. 

On August 16th, Jonah will have been at the Anderson Center for Autism 4 years.  It’s still the best place for him to learn and grow and become as independent as possible.  We still know we did the right thing.

It’s just….well, not speaking for anyone but me, I discern a cognitive plateau in Boo.  I find it hard to stay encouraged that he’s gaining any ground.  His learning happens at a snail’s pace.  But maybe I’m off the mark.  I can write or call his teachers and behavioral management specialists, but I know the answer they’ll provide:  a gently euphemized, politically correct assessment of his progress and its intended path, however slowly, toward gaining skills and learning things sans aggression.  I should contact them anyway, and I will.  But not now.  Not today.

So here’s the middle of my story, now the end.  As you can tell I’m always photojournalizing our visits, with a lot of snapping pictures of Boo from the front seat of the car.  In this 3-photo sequence you get to see:

A.  The light bulb of a “naughty idea” come upon his face, igniting a smile

B.  His delight at this idea and the beginning of its execution:  snatch camera from mama

C.  The resulting photo he took of himself shortly thereafter

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I adore his laughter, his happy, the moments during which he is bright and eager and fun – hatching ideas, trying to pull one over on us.

We’ve learned to accept whatever comes because we love him.  Do I wish there were a “cure” tomorrow, a magic pill we could give Jonah to make him neurotypical?  I don’t know.  Should I wish that?

I’d prefer an à la carte menu.  Leave out the aggressions & add more interests (in anything besides car ride).  A steady, if slow, improvement in skills and cognitive abilities.  Some Calm.  If I want to get greedy (and since this is an imaginary scenario, what the hell), I also want him to be verbal. Conversational verbal.

I hear Iris Holland screaming in the movie Mr. Holland’s Opus, stamping her feet and slamming the table for emphasis:  I want to talk to my son!

But it’s a dumb game, even in pretend land.  I cannot pick and choose my child’s traits, and to do so would be morally questionable at best.  I just want him to be happy.  How many times have I repeated that sentence throughout this blog, I wonder?  How many times have I repeated myself about other things as well?

If I have, I suppose I should apologize — but it fits in well with the whole repetition theme, after all.

Here are extra pics of Boo to make up for lost time.

I’ll be back soon.

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^^^ With Grandma in the waiting room of the JRA doc.  She brings him a breakfast sandwich and a lem-a-made.

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^^^ Daddy helping him out of his harness.  Buzz cut!

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^^^ He loves grandma.  Grandma adores him!

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^^^

“Childhood is measured out by sounds and smells and sights, before the dark hour of reason grows.”

~ John Betjeman

Perhaps Jonah shall never know the dark hour of reason. I think that might be okay.

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Mama in the front.

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Today someone from the Anderson School called to tell me that Jonah had a big-time take down.  He must have a little cold because it all started when they brought him to the nurse to give him some cough syrup.  He wrangled the bottle away from the hapless nurse and chucked the whole thing at her, then topped that off with an attack.  After a few minutes being held in a two-person take down, Jonah calmed down only to need another 1-person hold a few minutes later, then possibly another aggression right after that (truthfully, I lost count) before it was all over.

Jonah must really hate that kind of cough syrup, I thought at first.  But then he would have said “no,” or something, right?

This is the second major aggression in two weeks (and yes, I do remember the days where that statement would have been a miracle).  I hate the school’s area code.  845 comes up on my phone and I get a shiver down my spine.  It could be anything, but it’s almost never anything good.

Plus they have someone new who makes the phone calls home.  She talks as if she’s reading a report off a card to an uninvolved third party, and I’m not a fan of that.  I’m his mom.  But it’s really a small thing to bitch about in the midst of it all.

The Saturday visits with my mom have been very good, thank God.  Boo is crazy for the usual:  trains, baths, all the food he can eat, car rides, grocery store.  Sundays are good too, for the most part, Andy says.  Jonah’s new thing is watching the whole of Willie Wonka and the Chocolate Factory.

If you get him to YouTube and type in Trains, Jonah can select the one he wants. Always at top volume.

If you get him to YouTube and type in Trains, Jonah can select the one he wants. Always at top volume.

I hope he feels better, my sweet boy. I want to hold a cold cloth to his little head, sing Guster softly into his ear, and hold him in my arms as he falls asleep, all childlike and cherubic-not-too-sick.  All of it fantasy, even if it were possible.  Luckily Jonah is in general a healthy little kid and we’ve not had to deal with anything super-serious (not counting his eyes of course).

So we’re watching Jonah’s health and my own too – I was going to blog about my attempt to be a kidney donor but instead I’ll just give it a mention.  The last set of tests before the transplant at NY Presbyterian Hospital  showed that I had kidney stones and therefore can never donate a kidney.

Please send healing thoughts an/or prayers to my intended recipient, D, who has no kidneys at all and is on dialysis 3 times a week at age 28.

And while you’re at it, please join us in hoping and praying that Jonah’s aggressions stop, that he was just not feeling well, that he’ll continue to verbalize more and attack less and less often.

A happy, blurry moment

A happy, blurry moment

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Jonah is well.  There is the usual stress for him associated with the end of school, the break in his routine and its resulting aggression or crying jag.

When there is a day off from school Boo is used to visiting with his daddy, but his daddy can’t come and get him every day and poor Boo can’t understand that – or perhaps he simply refuses to understand it.  I can’t wait to see him on Saturday.  Last Saturday I had less time to see him because I attended a parents’ group meeting on the Anderson campus.

Jonah has had a few aggressions since my last post.  My mind has blessedly shifted from a place of “watch the pendulum, hope it doesn’t keep too fast a tempo, wish it would silence itself into coda”  into a calmer spot of radical acceptance, where Jonah is Jonah and we all help him nurture, grow, and get through periods of stress, fear, or anger.  Especially his beloved daddy; long live Jonah’s amazing daddy.

Jonah and daddy = love

Jonah and daddy = love

This morning I walked outside to check my tomatoes (which will be miraculous plants if they are even close to “knee-high by the Fourth of July”).

I squinted at what looked like a piece of wood stuck in the fence…half on one side, half on the other.  I moved closer and saw it was a bird – a young bluejay, sitting as if too big to get out of its spot and fly away.  From about a foot away, I looked at the bird and the bird regarded me calmly.  I reached out to ever-so-gently touch its feathers, thinking maybe it had been stunned scared by Almanzo-my-cat, but Manzo was inside.

Then I crouched down so we were eye-to-eye and I stared deep into the bird’s  sparkling, black, liquid eye, feeling like Ricky Fitts filming the “beautiful dead bird” in the movie American Beauty…remembering him, for a moment, and how he felt about death, and that paper bag he danced with — how he said:

That’s the day I realized that there was this entire life behind things, and this incredibly benevolent force that wanted me to know there was no reason to be afraid, ever. Video’s a poor excuse, I know. But it helps me remember…I need to remember… Sometimes there’s so much beauty in the world, I feel like I can’t take it, and my heart is just going to cave in.

I snapped out of this and went into Wildlife Rescue Mode.

How do I help this bird?  It has to be injured; otherwise it would have flown away quickly the moment it saw me.  Confused and trying to remember everything I’ve ever learned about nursing a bird back to health (which is one chapter in a Laura Ingalls Wilder book where they find some baby birds and try to save them, failing one by one until they all died).

I went into the house and got a shoebox.  I put a soft dish cloth in it, then took another dishcloth and went back out to lift the precious little bird gently from its perch, lay it in the soft box, and examine it carefully.  When I came back, not one minute later, the little bird had flown away.

And circling above me was a larger blue jay, soaring from branch to wire to chimney.  Though they are chirpy and scolding birds, this one made not a sound.  It was as if he were saying hello, and maybe thank you, as well.  I double-checked around the fence to be sure the little one hadn’t fallen.

It was simply gone.

And so I clutched my box and soft cloths and went inside again, sweet tears coming into my eyes.

This day I was able to visit closely with a small bluejay, who was not afraid of me in the least, and have a conversation with his father (?)

A miracle to begin a beautiful day.

“And when I awoke I was alone
This bird had flown…
So I lit a fire
Isn’t it good?”

~ Norwegian Wood by the Beatles

I am so blessed.

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This post is in response to a comment I received on yesterday’s post, and in response to all the silent lurkers asking the same question:

If Jonah is so much better, why not bring him home?

First of all, Jonah does not live in an institution.  He lives in a house with 7 other kids and round the clock caregivers who love him.  He has a regular schedule & routine.  He goes to school on campus with wonderful teachers who nurture and educate him in a way that no one else could.  These people live and breathe autism.  Boo would never, ever have come as far as he has without being at the Anderson Center for Autism for the past three years.

Anderson also has pre-vocational and independence training, with mock apartments and mock work situations depending on each child’s ability.  The children learn to make beds, do laundry, help cook, etc.   The caregivers  take Jonah out in the community and teach him how to behave appropriately in the grocery store, at the movies, bowling, etc.  They have a huge pool on campus and Boo loves to swim.

Jonah is not “fixed.”  They have not cured him of autism.  I called it a “mini” major milestone for a damn good reason.

In fact, just last night Andy called and told me he’d taken him all day (which he does often, whenever he can, because Andy moved just 5 minutes away just to be close to his son)… and that Jonah was “squirrely” — he’d had an aggression just that morning because another kid came in his room and Jonah didn’t want him there.

Jonah ended up attacking a caregiver and pulling some of her hair out.  Now, that’s not a “two-person take-down” – the stuff I’ve been speaking of that has been mitigated to once a month or so — but it is aggression and he still needs to work on that.

I am still afraid to be alone with my son, Andy suggested I add once he read this.  I don’t like to type it but it is true.  Jonah cycles through his behaviors (what I’ve called the pendulum) and at any time he could really hurt someone during an aggression.

Andy also suggested I not answer flamers, so I took a lot of other stuff out.

‘Nuff said.

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There’s a portion of the autism population hiding in their homes afraid.  I always thought we were the only ones when it was happening to us.  The severe autism groups on Facebook tell their stories, and I have joined them even though my own journey through the aggressions and the helplessness and fear is largely over.

On the other side there is mostly peace for me now, especially nearly 3 years after admitting Jonah to his residential school, because I know my home and my body and my child are safe, that we are getting better, that I have no other children to worry about or care for.

What I never knew is how I was one of the lucky ones…the one who found a great residential school with an opening for my poor Boo, and quickly enough so that I did not completely disappear into despair before it happened.

I want to help these people who are tired, who are so strong but feel broken, who have no idea how or where they are going to find help.  Who buy drive-thru food for their child only for the child to throw it out the window….who clean up smeared shit and cover up patches of bruises and scratches and bites incurred by their very own Tasmanian devil, who put on masks they don’t want to wear and face judgemental people who have no fucking idea what they are going through.

It’s like Andy DuFrane from The Shawshank Redemption, crawling through 500 yards of foul sewer shit to find the freedom on the other side, only there is no other side and they’re trapped in the sewer.

There are so many places the people in the severe autism group tell about, where their child was sent and abused, or neglected, and so they brought them home again.  There are so many areas of this country that offer no help at all.  The police have no idea what to do and the psych centers won’t take kids who can’t communicate effectively and the psych drugs are a sick, sad game of roulette.

I find myself holding back lest I become a residential school advocate.  I remind myself that just because it worked for us does not mean it is the right path for someone else.  I need to remember all residential schools are not as excellent as The Anderson School for Autism.

I can only comfort, and cheer-lead, and celebrate the joys, and give virtual hugs and love wherever I can.  I can talk about the Anderson School and offer this blog as a written account of the journey to the decision to place him there – particularly 2010-2011.  Read it and weep.  Or learn.  Or judge.  Or laugh.  As I’ve said before, if it helps one person it is worth everything to me.

What no one knows (except those of us who have lived it) is that there is this giant portion of the autism population who are desperate for help.  They need that help and they need it NOW.  I don’t know where to start helping and it all feels so insurmountable.

I’m still on 3 psych meds to get through the day.  I still hate Mother’s Day, because it feels like a fake celebration.  How can I be a good mother when I am not mothering?  As wise a choice as it may have been, what, exactly, is there to celebrate, but my own poor mother, who only wants to love and hold and spoil her only grandchild?

I want to send every one of these autism mothers a card, a gift, some reassurance.  I want to convince someone very very rich to build 10 or 20 or 50 residence schools — fantastic ones — however many it takes so they  no longer have to live on the edge, fingernails digging in to the edge of the cliff.  God send me a lottery win so I can do it myself.

As for Jonah he is well and he has been happy, running around outside on the school’s playground, eating like a horse, his growth spurt starting so he is 5 feet tall now.  He has learned his simple sentences:  “I want cranberry soda please” and, still, the oft-repeated phrases:  “car ride?”  but if he is upset with us now he cries instead of attacks and he requests “quiet time” (usually lying down on the bed with him) instead of bursting forth in lightning-flash anger.

Jonah and grandma

Jonah (with his crackers lined up) and grandma

happily patting the chips

happily patting the chips

...and the cookies

…and the cookies

and a happy car ride

and yet another car ride

I have so much to be grateful for.  I want that for everyone in the group.  Someone needs to pay attention to us.   Not only are we not going away but we are increasing in number.

Here are a bunch of sweet Jonah pictures from our last few visits –  in several of which he is pat-pat-patting the package of crackers or chips or whatever, because he thinks it’s funny – and although we’d like whole chips and crackers, the giggles are worth everything.

My prayer today is a strong and fervent one – that the other parents like us find the help they need and that awareness is increased to the point where we can no longer be ignored or judged or swept under the rug.

Please, God, and thank you.

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A year ago today, Andy and I dressed Jonah in a green “Hi!  My name is Jonah” shirt, drove him to the Anderson Center for Autism, dropped him off, and left him to live and attend school there.

I have a good memory for dates, so this was an easy one to remember – aside from the fact that it’s the day Elvis died (35 years ago today).  I woke up this morning with a strange feeling of dread, as though I were going to have to go through the whole thing all over again.

And yet something saved me from turning into the weepy self-pitying woman I, left unchecked, have the tendency to be.

That something was a boy.  And a box.

Someone on Facebook commented on the Scare Me Nots page (I am their facebook “mommy”) – and when I saw the name, I was compelled to look at their page.  The page is for a little toddler who enjoyed 3 months of health before seizures led to a discovery that his little brain is essentially degenerating – and there is nothing they can do.  I wrote to the boy’s mom and asked for her address so I could send her the Scare Me Not she liked.

Then, last night, I spent hours filling and decorating the box, all sides of the box, with pictures from books and magazines and calendars in my crafting basement.  I used a whole roll of packing tape and carefully adorned the box as though it were a gift in and of itself.  The process distracted me from thinking about how I haven’t had my Boo with me for a year.

This mama may not have her little boy at all for much longer.  There’s nothing like perspective to keep you from self-absorption.

When I got to work with the box in my passenger seat, I felt an urgency to get the box to her for her boy.  So I left work and stood in line when the post office opened, and I mailed it the fastest way I could.   Now I feel like I love her boy as well as my own.  I pray for him as I pray for Boo.  And after I mailed that box, I was no longer so worried, so pained, so obsessed with thinking, wishing, complaining, crying about my own boy — and I let go of holding myself bow-string tight.

Instead I felt humbled, and no longer alone in my sadness.  Pain is pain.  Loss is loss.  Everyone has to have some.  None escape grief and trouble.  We all have crosses to bear, some of them terrible.  Unimaginable.

Yet there is a hope we all must hold, that things will get better, that the light at the end of the tunnel is not an oncoming train but rather a beacon of sunshine.

That on the other side there is beauty — and others – even strangers – who really do care.

“All that matters is what we do for each other.”
  ~ Lewis Carroll

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