The Never Normal

Some of the people at the Anderson Center for Autism will email me every so often to check in and see if I have any questions or concerns.  More often than not, I’ll answer with just a brief note of appreciation, but sometimes I will ask a question or express a concern.

This past week was one of those times.  When one of Jonah’s behavior specialists emailed me, I directed the inquiring behavioral specialist to my broken post, explaining that I’d been depressed about Jonah’s seeming stagnation and asking for glimpses into Jonah’s life and happiness.  She emailed me back and asked if I wanted to talk.  We scheduled a time, and she called me.

I wonder if every parent she calls must force words past a throat tight from trying not to cry.  It seems I am always crying on the phone to the Anderson folk.  Hell, I don’t think they’ve ever heard my normal voice.  Anyway, we spoke, and she was kind, and said she saw a lot of hope for Jonah.  She told me he had, just that day, approached a new student in class who was sitting on a beanbag.  Jonah sat right down next to him, smiled, and was calm.

This behavior specialist knew I needed her to tell me something good.  And she kept on knowing it.  The next day, she sent me this email:

Hi,

I just wanted to send you a quick note.

Jonah went swimming with his classroom peers today!  He sat the edge splashing and playing for about 10 minutes before he walked to the deep end and finally jumped/dove in!  He swam to the stairs, got out, dove in, again and again!

He was laughing and enjoying himself!  Staff said the last few days at school have been really positive!

Best,

R

I felt the excitement of those exclamation marks.  Easily I pictured Jonah’s lithe form, diving effortlessly and gliding far under the surface of the water to pop up right at the ladder.  I sent R a thank you that could never hope to express how much the email meant to me.

Sometimes I feel envious of the people who get to witness Jonah’s joys firsthand.  I get so few glimpses of him that I over-record him when I see him and then watch the short videos over and over, as if to memorize his smiles and laughter.  It’s a strange thing to know that a whole group of other people have way, way, more interaction with my son than I do; a myriad of mundane activities are supervised and guided by his Anderson “family,”  for the past almost-five-years.  But all that time has trained my mind to accept this strange mother-not-mothering existence.

They’ve raised Boo’s dosage of Clozaril by a very little bit, and so maybe that’s the reason for his recent positive days.  For all I know, as I type this Jonah is mid-attack, biting and kicking and hitting.  But for now, today, I will read R’s email again and stay in that place and those moments, enjoying his time at the pool.  It’s a good place to stay; as transient and fleeting as it may be, it happened, and no one can force me to focus my gaze and thoughts elsewhere until I’m good and ready.  Even the email in my inbox (the one always from the same person, always to notify me of an incident of aggression) can sit there unopened for as long as I like.  I do not have to move on from Jonah’s swimming pool fun and nothing can make me move on from it.

Tomorrow I may be ready once again for the roller coaster.  Today I’m sitting on the bench and letting other people ride.

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“So where to now, St. Peter?  If it’s true, I’m in your hands
I may not be a Christian, but I’ve done all one man can
I understand I’m on the road where all that was is gone
So where to now, St. Peter? Show me which road I’m on.”

~ Where to Now St. Peter?  by Bernie Taupin/ Elton John

“Somehow, something always happens just before things get to the very worst. It is as if Magic did it.  If I could only just remember that always. The worst thing never quite comes.”

~ A Little Princess by Francis Hodgson Burnett (one of my top 5 favorite books of all time)

So I escape into movies a lot, and last night decided to watch Dog Day Afternoon.  I hadn’t seen it in years, and forgot about the opening song – Elton John’s Amoreena.  Damn, it sounded good.  So good I listened to it over and over, then spent the rest of the evening delving into Tumbleweed Connection.

And I remembered something really, really important – that music can and will save me, every time, if I let it.  From Elton John I moved on to Guster, as I nearly always do ever since I discovered them early in 2003, and then a whole bunch of other stuff.  I don’t have or watch television at all, so I fill in the spaces with movies and music.  But sometimes I forget to listen to the music.  Then I hear something, and it hits me, and I’m reminded of its power.

And I let something else get completely by me — the fact that when we are on the car rides with Jonah, he immediately says music on?  Music is the first thing he asks for, every time.

While bemoaning Boo’s loss of interests, I somehow forgot about music. He still requests certain CDs and recites preferred tracks.  He asks for radio and then, when he wants a new station, for other radio.  How many videos have I posted with him rocking and jamming to his music?

Maybe when I see him tomorrow, I should sing.

There’s one new go-to song/video I want to share – George Ezra’s Listen to the Man.  I heard the song before I saw the singer and couldn’t believe what a youngster he is – and the video, starring Ian McKellen, is really very cute. 

Some new snapshots of Boo.  If I’ve got to be broken, I can at least be broken with my music and my pictures and my peeps (thank you, commenters all from yesterday – my fellow disbelieving & discombobulated).  You guys rock.

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The months’ events blend and pour together, watercolor spills on pages.  I want the resulting mix to form a picture or a tale to tell, but it’s really just a sloppy mess.

That medicine…the Clozaril…it seems to be working still.  Kind of.  But nothing has been able to exorcise the aggressions.  He might be attacking less often, but he’s still attacking.

Meanwhile, seemingly all his interests – everything that’s provided me with amusing anecdotes to write about for the past five years – have faded away.  There’s no more asking for “Oompa Oompa” and laughing hysterically at the indignant passion of Grandpa Joe.  No more begging to walk on the dock by the river and then jumping in to swim, all silly and happy.   No more wanna go park, always choosing the first swing, asking for more push, jumping off to head down the path and explore.  No more watching YouTube videos of trains, entranced by the rush of movement and sound.

Evidently it’s become too much to expect Jonah to enjoy doing anything at all, and that’s a hard truth to swallow.

Yesterday, Jonah’s new psychiatrist called me.  She was in a team meeting with Jonah’s nurse, case worker and a few others.  She told me they want to increase the dosage of Clozaril.  I asked questions I suspected she couldn’t answer, but I asked them anyway.  Can they make the aggressions go away?  Will enough Clozaril stop this?   Do we need to trade his entire personality for it to happen?

My questions are jokes with shitty punchlines.  I have learned not to hope anymore.  Hope gets smashed too many times and expectations are brought down so many notches that I find myself beneath the surface where it’s always cold and dark and still.

Andy and I had one baby.  We dreamt of all the things he could be and do…all those wonder-filled possibilities taken away, one by one.  We dealt with it.  Okay, so he isn’t going to converse.  And okay, so he isn’t going to make friends.  He isn’t going to play on softball teams and tell ghost stories at sleepovers and fall in love.

I could always see the bright side.  I’d say to myself:  At least I don’t have to deal with competitive, gossipy soccer moms.  I won’t have to find a way to comfort him when world events are frightening.  I don’t have to watch the inevitability of innocence slipping away from him as it does from all of us who grow and learn and mature in the land of normalcy.

But then the possibilities taken away began to outnumber those left over.  Because he became aggressive, he wasn’t allowed to attend the beautiful autism summer camp in Altamont with the giant pool anymore.  Because he attacked others, he could no longer go to the fun after school program at the Center for the Disabled.  He’d had to leave his wonderful local school.  His mama and daddy.  His home.  And now he is too aggressive to stay at the residential school which he was sent to for being aggressive.   He is there today only because there is nowhere else for him to go.

On Sunday mornings, My mother and I drive down and meet Andy at his apartment.  We drive to Jonah’s school and we call Jonah’s residence (I can never really call it his house, let alone his home) and someone walks him out to us.  We are usually able to get back to the apartment without incident and sometimes Jonah will get out of the car and come inside.  Usually my mother has brought him something yummy to eat.  Usually he eats it, making a mess, occasionally throwing some of it at one of us.  Always he asks for car ride or mama in the front.  My mother stays in the apartment.  Once the three of us are in the car, there is no stopping or getting out of the car.  Jonah requests music and the volume of said music.  We take “loops” – specific cyclic driving routes past quaint restaurants and a giant fairground and the famous home of a president’s mistress.

If we are lucky Jonah does not attack us.  If we are lucky we do not need to pull over — and if we do have to pull over, we are lucky if nobody calls 911 when they see us and we do not have to explain ourselves to the police.  If we are lucky we will return to the apartment and Jonah will go back inside for a short while.  If we are lucky my mother and I will drive home a few hours later without tears, without bloody bite marks or bruises or a burning scalp.  Andy’s arms are a permanent criss-cross of scratches and scars.

I do not write about it for attention, or to seek sympathy.  Those things are useless.  I do not write about this to complain.  Complaining implies that someone can do something, that there is a repair that can be made.  I write because I started something when I innocently typed out my first post in August of 2010, and people have told me they are interested and they care.  People are dealing with similar shit and need to know they are not alone.  I don’t think it’s fair to disappear.  Yet in the midst of what feels like limbo, sometimes there just isn’t a lot I want to say.

Ours is a purgatory from which deliverance is, finally, neither expected nor anticipated.

I am grateful that Jonah is safe, and well cared for, as happy as an autistic child, plagued by aggression and drugged into God-knows-where, can be.  I can’t speak for Andy but I do know he is grateful too, and also uncomplainingly resigned to his fate.  He is Jonah’s father before everything else, and he has chosen that life, and it has been tremendously difficult.  It would have destroyed most other people I know.  At least he has a girlfriend and they are in love.  He deserves the best in this life.

I think about Andy lately, wondering at the wreck I made of his life.  I think about how he was my husband and now he isn’t, and how if I could only go back I would honor the intended lifelong bond of that and stick with him no matter what.  A few weeks ago, I bought the kind of shampoo he used when we were married, to capture even just the scent of that lost life.  Am I romanticizing it?  Am I wasting my time with if only?  Yes.  Yes, of course I am.

For a long time I’ve grasped at ways to manage the emotional toll of both my own choices and of circumstances over which I’ve had no control.  For what seems like forever I’ve grasped.  And I know better than to grasp – hell, I’ve read plenty of Thich Nhat Hanh.  But I have so often not been healthy, or wise, or even rational.  Some of those grasping ways I shared here – attempts at relationships, vacations to new places, things to build on or look forward to.  Places and people from which I sought excitement and happiness and hope.

But sitting here now, today typing this, I feel like I’ve finally, conclusively broken.

Too many cracks have converged – in Jonah’s life, in my life outside of him.  In the whole world.  As I type this, the death toll is still rising from the latest almost daily violent tragedy – this one a terrorist mowing down dozens of people with a fucking tractor trailer.  My oldest friend is 91, and it’s gotten to the point where I envy her for being on the way out of this world.

Should I be at the end of my blog if these are the things I am typing now?  Who wants to read doom and gloom?  It’s what I’ve felt for a while, so I haven’t been posting.  I’ve been writing the posts, though — dozens of blog entries, all alike, all deleted.  Maybe I’ll actually publish this one.

Maybe it’s just today that I’ve run out of ways to spin it.

There was one miracle, though.  I saved it – the best – for last.  it’s Jonah’s school photo, taken by Life Touch, where he looks positively beatific.  See for yourself:

How they got him to sit still, let alone pose and smile, is the mystery of the millennium.  In my life and under our current circumstances, I call that a miracle.  I pull the photo out constantly and look at my beautiful boy.

I love him more than I am broken, even.

Maybe that’s the very thing that keeps me pushing on.

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Jonah was in a happy mood on Sunday, and I caught a lot of it on camera – and video.

Tooth brushing hilarity

He’s 14 now and sometimes the teenager in him shows through:

He goes straight for the fridge & freezer and leaves both doors open while he browses

Always with his hoodie up, yo

After car ride Jonah gently took my wrist, then his daddy’s, and led us both into the bedroom and the big blue bed. “Quiet time, Boo?  Want to be in the middle?”

Yes, with daddy on one side and me on the other, both of us curved in, with Andy’s arm draped over Boo.   Even as he turns his head on the pillow to face his father, he reaches a monkey-arm behind him and guides my hand to rest on his little hip.  Thus parentally cocooned, Boo rests – a real rest – not for 15 seconds but for several minutes.  I half-expect him to slip his thumb into his mouth, then realize I have no idea how long it’s been since he sucked his thumb, then realize he doesn’t suck his thumb at all anymore.  To the best of my knowledge, no one ever cajoled or convinced him to quit — he just grew out of it, maybe.

His resulting buck-toothed smile is no less cute for having been shaped by thumb sucking.  I may be the only one who thinks so, but then again I sucked my thumb too (well past toddler-hood).

I adore this photo of him, his two front teeth barely peeking out and his blind eye covered by the hoodie:

I love his expression & sweet, innocent face

After quiet time, Jonah paced the kitchen while my mom and Andy talked politics and I urged Andy to do his Bernie Sanders’ impression (which is usually even better than what you’ll hear in this video.  This little video snippet cracks me up every time, though.

So then I decided to have a little fun with my right-wing mother. In the kitchen, I taught Jonah to chant “Bernie, Bernie, Bernie,” then I ushered her in and filmed this:

Even my mom couldn’t help but laugh.

Clinton, Trump, and Bernie were all here in Albany this week ahead of Tuesday’s primary, but just I’m not a crowd of hyper people kind of gal.

‘Twas a good day in the land of the Boo.

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Home sick today from the full-time gig.  Stomach sick.  Still doing the part-time gig too, and it looks like it’ll be another 4 weeks before that’s done.  Talk about famine to feast – for two years I quit full-time work altogether, and now I’ve got two jobs and work 7 days a week.  I’m exhausted, and going through lots of changes.

Physical, too – a whole new territory of middle-aged spread.   It’s driven me to distraction because 75% of the weight has settled in my stomach, while my arms and legs are still thin.  I’ve lost muscle tone and strength and I’m too tired to do anything but change my diet – I “diagnosed myself” with gut-yeast (where it’s likely just laziness and middle age) and bought all this healthy crap to eat, which seems to have messed with my digestive system.

And whereas I used to be considered skinny (at 5’7″ and 116 or so), I’ve grown out of all my clothing except my hippie skirts with elastic band tummies (and thank God I have a lot of those).  I’m 140 pounds, seemingly overnight, but likely over the course of 5 months or so now.  I don’t know how to deal with it and I’m freaked out that it freaks me out.

In fact all kinds of things have been freaking me out, not the least of which is the uncertainty of Boo’s future placement coupled with his new, relatively stable behaviors.  I think the decrease in behaviors and the success of the Clozaril  lulls Andy and me into a kind of complacency, but I’m not sure what would be preferable.  Constant vigilance?  No way.  I’m strung so tight lately I’d snap.  Maybe I should be researching the four residential schools to which the district sent referrals.  I don’t want to.  I just can’t.

And I owe apologies to all of you who’ve reached out to me these past few months without an answer. (I have 10 pages of unanswered e-mails – just checked).  I so appreciate the fact there are many people who care how Boo and I are doing.  I appreciate it more than you know.  Some days it’s what keeps me going, the knowing that so may people really care.

I’m sorry I’m a shitty communicator.  Right now I go days without even turning on the computer – partly because I type all day.  I’m like a stretched rubber band and at the same time (paradoxically?) too weary and drained.  Too tired, too tight.  Tight like it seems I’ll never be able to truly relax ever again.

Relax my mind, yes…I can still do that most times.  But my body seems made of metal rods and taut, evertight muscles. Shoulders perpetually raised, jaw always tight, TMJ in full effect.  I feel broken, done-in.  My heart beats rabbit-like and skittishly, and bedtime is the best time of day, hands-down.  I’m feeling on the decline, and it can’t help that menopause is hovering.  It’s a regular pity party over here.

But not to worry.  I’ll rally when the springtime truly comes – it’s stalling this year after a record-breakingly mild winter.  Ah, the humanity!  We got more snow this past Monday (April 4th) than in the entirety of the 2015-2016 winter season.  And when I’m back to a 40-hour a week work schedule, I’ll be able to exercise more and moderate my diet (instead of the dietary upheaval I attempted) and I’ll post and type and e-mail.  It feels good to write.  I forget, sometimes, how good it feels.

I deleted my Facebook account on January 1, but miss so many people with whom I communicated and kept in touch.  That’s the part of Facebook I wish I could still have.  But I can’t un-see things seen there and I find that, in many cases, ignorance really is bliss.  I can’t stop myself from going to pages I don’t want to see and clicking on things I ought not to click on.

Boo is doing well, on the whole.  His aggressions are still fewer and farther between, but not increasingly so or mitigated completely, as we’d really like to see.  But then they’re still bringing his dosage of Clozaril up very slowly, and things don’t happen overnight.  My wish-upon-a-star is a Jonah living completely free from aggressions for the rest of his life.  The reality isn’t there yet, but I’m grateful for what we’ve got and where we’ve gotten.

I’ll take a new batch of photos to share.  Jonah was good on Easter and got to see beloved train, which was a sweet bonus, but I didn’t take many pics.  Most of the time now he doesn’t want me to, and I’m not out to piss him off.

Time to go — I’m making it to my 2nd job, at any rate, and feeling more refreshed for all the extra sleep I got.  Thanks for the love.  May it come back to you a thousandfold!

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And so the Anderson Center for Autism has set into motion the process whereby Jonah is transitioned to another school.  In the meantime, the Clozaril kicked in and his aggressive behaviors have decreased dramatically in both frequency and duration.  It’s been about two and a half weeks now, and we’ve been afraid to dare to hope that it will stay this way.  Still, we revel in Boo’s smiles.

When my mother and I went to the Albany School District meeting last Thursday, I was fairly confident that this would all be…well, kind of postponed as we all hang back and see how Jonah continues to do.  After all, if the aggressions go away and stay gone, all this is moot.

Only it doesn’t work that way.  With Jonah’s Anderson team phoned in and two Albany School District Special Education representatives present, we spent two hours reviewing Jonah’s progress report. His speech therapist, classroom teacher, residential manager, behavioral specialists, and other peeps all spoke – each report carrying a common thread:  Jonah’s aggressions of fall 2015-winter 2016 have prevented his progress at all, and in some cases he’s regressed.  Managing his behaviors precluded all other activities.

We know, we know, I’m thinking impatiently.  But he’s better now.  Tell them about the last two weeks.  He’s on new medication – and not just any new medication, but a SuperPowerfragilistic one for which they had to get special Board of Health approval just to try.

And what antiseptic, ambiguous, academic language (rife with acronyms and special ed vernacular) used to discuss it!  In an alternate universe we spoke street English and it was over in five minutes.

The long and short of it?  They can’t just stop the train and let us off because of two weeks’ good behavior.  So referrals were sent out – to Tradewinds, Springbrook,  the New England Center for Children, and three different St. Christopher’s campuses – but no one is going to force Jonah to leave Anderson when (and as long as) he’s blessedly better.  After a year, they call him stable and revise his IEP.

The past month warranted plenty of blog entries. I’ve plenty to tell, but I’m working full-time now and also (temporarily) part-time, every day — weeknights from 5-7, and today/tomorrow for 4 mid-day hours.

The part-time gig is sitting with an elderly friend at a rehabilitation center, and I love her, so it’s not like it’s difficult — but I’m tired.  I’ve been back to FT work since mid-December and I type all damn day, quite literally non-stop but for two strictly clocked 15 minute breaks and one 30 minute lunch.  When I finally get home I just don’t have it in me, most days, to even turn the damn laptop on.  I have a new pot belly that appeared rapidly – just since I’ve started working again, really – and I can’t fit in my pants or some skirts.  When I go sit with my friend and they come in to do physical therapy, maybe I’ll do some exercises with her.

But what matters most to me is Boo, and how much better he is!

I carry joy in my heart every day he is happy, and no amount of tired can take that away.

But I’m out of time for now.

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I just hung up from a conversation with R, one of Jonah’s awesome behavioral specialists at Anderson. She called to tell me how Jonah’s been doing these past two days (since he’s been on the Clozaril. The dose is very small right now and they monitor his vitals more than once a day).

Then she says she’s about to walk down to the residence and enjoy some chocolate cake with Boo.  And he’s helping make the cake with one of his caregivers.

Then she says (I could actually hear her smiling) Jonah’s been calm and aggression-free for both days.  He was in a couple of managements today, but they were waaaaayyyy easier to handle.  No violence, just the ol’ swat motion.  In his classroom, he was happy.  He was laughing. Dancing.  Able to participate.

[After typing that I paused and read it again, and again, and then another time, allowing the words to be real – things that are actually happening.]

Do I sound too hopeful?

Does it matter?

I bask in this news.  Allow myself to envision what she described.  Drop my shoulders, un-clench my jaw.  Exhale.

Even if it’s all just for these two days — thank you, God.

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Every day since I last posted, I get something from Jonah’s school – maybe a phone call to tell me about an incident report and body check, complete with a listing of where and how bad his bruises are.  Then, most days, an e-mail as well — always phrased exactly the same but for the date and time:

Good Morning,

 This email is to notify you that Jonah was in a physical intervention on xx/xx/15 at x:xxam in the xxxxx and at x:xxpm in the xxxxxx office.  If you have any questions or concerns, please feel free to contact us.  Thanks

 xxxxx

Education Administration

 Anderson Center for Autism

4885 Route 9, PO Box 367
Staatsburg, NY 12580
* Jxxxxx@ACenterforAutism.org

—

It’s a sickening feeling, waiting for the e-mails, knowing they’re coming, understanding I cannot stop them from coming, trying to accept I am helpless to cease the cycle of Jonah’s aggressions.  And I was just interrupted by a phone call from them now.  They tell me “Jonah is okay” first, which is important, because I’ve panicked from seeing the 845 area code come up on my caller ID.  But I’ve gone from a heart-pounding worry to a dull, almost numb acceptance of whatever it is they’re calling to tell me.

I wish I had something better to report.  Jonah’s psychiatrist spoke to Dr. Ankenman from my last post, and together they determined Jonah was not one of the individuals who could be helped with his adrenaline therapy; his pulse and blood pressure statistics did not indicate an appropriate match.  And so they have been using Thorazine while very slowly titrating down his other meds.  The dosage of Thorazine has been increased, little by little, and now he is taking 50mg 3 times a day.

It’s not working.

I spoke with a childhood friend of mine who has a daughter with autism.  She’s been doing chelation and mega dosing with supplements, and my notes from our conversation include:

Search Robin Goffe – YouTube videos/articles & on FB

Guggenheim and Robin Goffe – video

Autism One Conference – Every May in Chicago

Immune System Deficiency

 BioMed

ATEC test by Autism Research Institute ARI ATEC

Healing the Symptoms Known as Autism – by Kerri Rivera, who started a protocol where kids recover entirely from autism

I’m grateful for her input, and I cannot say I’ve thoroughly investigated all of these things yet, but I noticed that the book (last item in the above notes) has a long list of reviewers who’ve rated it a 1 or a 5 (worst or best) and hardly any in between; people seem to regard the author as either a child abuser or a saint, which doesn’t bode well.  Plus I’m just not ready to climb on board with anyone or anything that has only anecdotal evidence.

Then, last week, I lost one of my best friends, DF, very suddenly.  She passed away after a hospital procedure led to complications. Today is her wake, tomorrow her funeral, and the awful finality of it is finally starting to sink in.  I’ve been sick to my stomach over Jonah, and now from my dear friend’s death, and I don’t feel like it’s the beginning of any kind of holiday season in which I’d like to participate.

I’m trying to stay optimistic, and I’m very grateful for the many blessings in my life.

Still, I feel stranded. Choked off.  Tired.  I’ve lost too many people too soon.  I’ve come to accept the deaths.  After all, at least our relationships were not lost, not really.  And I can even hope to accept the one relationship it seems I can’t fix.

But I can’t accept that nothing can help my son.

For those of you who left e-mail addresses, thank you.  I will write to you as soon as I can.  Thank you to my mother, always at my side visiting the grandson she loves enough to risk/incur injury and heartbreak every week just to spend a few minutes with him.  Thank you to my close friends (you know who you are) and to all of you out there who have expressed your support, left kind comments, assured me I am not alone, sent cards, never judged, and stayed with me through it all, good and bad.

We’re hanging on.

Jonah’s daddy, holding him on the grass of the Anderson School campus during a recent aggression. Jonah’s got Andy’s shirt tight in one hand. Eventually, Jonah calmed down. Once under control, Jonah got into the car and we started our visit.  Jonah’s daddy is amazing – he keeps his son safe and loves him so very much.

Later that same day: Jonah has a calm moment and even, thank God, a smile.  My sweet, precious Boo.

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