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Posts Tagged ‘Anderson Center for Autism’

My son is being transformed by time from boy to man, all while remaining uniquely innocent.  And, these days, happy.  He’s swimming a lot this summer and has just been moved to a “high school” class with older kids.  This is only his third classroom since starting school at Anderson in September of 2011.  I like that they transition the kids slowly, as is appropriate for each individual.

His first two teachers were wonderful, and this new teacher has worked as a teacher’s aide with Jonah in the past.  I’m grateful Jonah seems to be coming into his own.  He can stay at Anderson until he is 21, at which point he will graduate; as we move forward, we can all figure out what’s the next best step for his housing and happiness.

I feel more optimistic about my son’s future than I have since he went away.  His charts show only minor behaviors like noncompliance and swatting his hand, and their frequency is lower than ever.

One day earlier this summer, the kids in his class made tye-dye shirts.  Jonah had a blast and was not shy about showing off his creation.

He even has the shadow of a hipster beard and mustache, when his daddy or caregivers don’t shave him.  He doesn’t seem to care about facial hair one way or the other, though he had to have some small bumpy skin tags removed from his cheek and chin.

That’s the other thing — Jonah now has the ability to stay still long enough for the

laser procedure.  Before this, we’d have to put him under general anesthesia for everything – even a dental cleaning.

And at his glaucoma appointments, now they can do a special scanning eye exam because Jonah can keep his head in the machine for a minute or two at a time.

Last time we were at the glaucoma doc and the technician guy was asking Jonah to keep still, I wanted to say “dude, you have no idea you are witnessing a freaking miracle right here.”  This is the kid who has been banned from doc offices because of his out-of-control aggression.

Now he is redirectable.  He waits pretty damn patiently for the doctor, and follows instructions with our prompting.  The doc sometimes forgets Jonah does not know left and right, so I point or use something in the room as a reference.  Boo still tries to cheat when they bother to test his left eye.  He rocks and hums and asks for two hamburgers.  He cooperates with patience he never had before.  He laughs as he waits til he’s set free to walk back to the van.

Life is good for Jonah Russell.  Andy is not as optimistic as I am.  Yes, we’ve been fooled before into the lull of complacency when Boo is good – but he’s never been this good for this long, and I say he is growing and learning and better at processing his emotions.  I say this is a miracle, if only a highly personal one.

People all around me with kids Jonah’s age are dealing with so many parenting problems that I feel a whole new gratitude for what and who my child is – and is becoming.

More than meets the eye.

 

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On Thursday the 7th, I took time off work for Jonah’s quarterly glaucoma doc appointment.  Two Med Run Peeps drive him the 90 minutes up to Albany every time in the Anderson van; Jonah rides in the way way back, transported like His Majesty the Prince of Rhinebeck.  I was very much looking forward to seeing him.  It has been a long, long stretch of time since Boo has had an aggression.  Since maybe October.  I was hopeful he’d be glad to see me.

The stars were aligned this day.  It was Laura Ingalls Wilder’s 152nd birthday, the Med Run Peeps were being their awesome, caring, kind selves, and Jonah was cooperative and happy.  Silly and funny.  Amazingly good.

Even more so when you consider that, unlike most visits to this doc, we had to wait a while; they wanted to take a scan of Jonah’s eyes before he saw his regular doctor.  So we moved to an empty area of the waiting room, where geriatrics henceforth feared to tread – though those with vision watched us curiously and not unkindly.  Jonah laughed his brash, loud laugh, pacing up and down the row of empty chairs.  He hugged me and asked for more kiss? again and again.

My son is nearly a man.  In a photo, he sometimes looks like a regular kid who is 16-going-on-17.

In person, though, there is no mistaking him for a “normal” teenager.  His disability is as visible as if he were in a wheelchair, and to be honest I don’t mind that.  In general, people are more compassionate now.  When Jonah was very young – until he was 10 or 12, really, this was rarely the case.

Back then, to some, Andy and I were bad parents of an out-of-control kid.  Once, an autism-denier went so far as to comment that I should give him Jonah for a week and he’d “straighten him out.”  (I think his comment is still on that long-ago post).  I remember how tempting it was to let him try… just to sit back and watch Boo kick his ass.   If there is anything from those darkest days I miss, it’s the secret evil pleasure of watching Jonah attack a smug doctor who’d ignored my earnest warnings of severe aggression.

I talk about the pendulum swinging: aggressions and respite, hope and despair – our cyclic existence with no real patterns upon which to prepare for the next “season.”

Dare I pretend
to hope
to believe
Jonah’s aggressions have disappeared altogether?

Since autumn of 2010, I don’t think he’s ever gone this long without aggressing in some way against someone.  He still gets squirrely, and he’ll swat or “flinch,” as the school calls it, motioning his hand in a warning.  It’s the rattle of the snake, and yet nothing comes of it anymore.  Now it is an end unto itself.

His awesome teacher Sophia wrote me yesterday that he had zero flinches this week.  Not just zero aggressions. Zero flinches.  My hero zero.

I’m proud of my son.  I think he’s worked hard with the wonderful teachers & caregivers to learn how to manage his feelings.  Fred (Mr.) Rogers said he wanted to teach children that feelings are mention-able and manageable.  It may well be one of the most important lessons a person can learn.

The rest of Sophia’s email to me reads:  “This week we learned more about coins and bills, we celebrated the Chinese New Year, the Phases of the Moon, we did an experiment with Oreos to show the phases.  Jonah enjoyed the part where he got to eat the cookies!  We made a banana sushi roll today during Group OT and we also enjoyed a nice walk outside!”

I was so happy to hear about his week and know he spends time learning in ways that are fun and comfortable for him.  When he first arrives at the classroom, he gets under a beanbag chair and blanket for a while.  They recognize he needs to start his day this way and I appreciate that.

And so Jonah is well, and happy.

The rest of this post involves another disappearance – so if you’re here just for Jonah news, all done. 

Every day when I get home and don’t have to go out again, it is my custom to take off my winter ‘office work boots’ I wear nearly every day and place them next to the radiator in my bedroom.  So on that same day – Thursday, February 7, I came home from Jonah’s appointment and put the boots where I always put them.

That night I woke up at 1am mid-migraine, head pounding hard.  I immediately got out of bed and took the med that stops my migraines about 50% of the time.  Then I stumbled into the bathroom and, without turning on the terrible light which has become my nemesis, found a washcloth and ran very cold water over it.  I returned to bed and nearly started crying in despair for what I knew was likely coming:  the 24-36 hour marathon of puking, even the tiniest sip of water rejected; dehydration and retching causing my head pounding to worsen and the head pounding causing nausea, on and on in a nightmarish underworld where there is only pain and the desperate desire not to be in pain.  In those first minutes lying down with the cool cloth, I prayed.  I prayed the fervent, frantic prayer of one willing and ready to strike a deal with Divinity.  Please, please, let this migraine subside and I’ll do anything.  You can take anything from me. Just make it stop.

And lo, on this day in the year of our Lord twenty nineteen, the migraine stopped, blessedly subsiding into nothing – the pain retreating as if ordered to cease and desist.  I eased into unconsciousness before I could pray or even think my thanks.

The next day I awoke…

…and, as part of my every day morning routine, got dressed, reached for my boots…

And this is what I saw:

One boot.

I looked under the bed.  No boot.  In the closet.  No boot.  After a while I didn’t have time to look anymore so I found my old pair from last year and wore them instead, telling myself I’ll find the other one later.  After all, how hard can it be to find a knee-high boot?  Yes, I lost 3 books of holiday stamps after New Year’s, but those are stamps.  This is a freaking boot.

Only later that day did I realize I’d promised in my prayer the night before to give anything for the migraine to go away.

The only conclusion I can come to is God took my boot.

It is now the next day, Saturday, and my mother’s birthday (Happy Birthday Grandma, says Boo).  I have conducted a thorough search for the missing boot.  I have looked in ridiculous areas and places where no boot could ever hide.   As of this writing I have no explanation, and I’m trying not to think about it all too much, lest it freak me out completely.

If after my death I am deemed so wonderful as to be considered for sainthood, could this missing boot count as my required miracle?

The world may never know…but I’ll keep you posted if I find it.

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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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