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happy birthday, jonah russell

Posted in autism, behavior, snow day, Uncategorized, Wildwood, tagged on March 7, 2011| 7 Comments »

My little Jonah Russell turned nine years old today.  Here he is as a baby:

Here he is at two; happy boy:

And at three, on his birthday:

I can’t believe how fast he has grown; I can’t wrap my mind around everything that has changed in his lifetime.

Last night I asked M to pray for me; he’s more traditionally religious than I, so I figured he might be a little closer to “The Source,” if you will.   I asked him to please pray that Jonah is good at school today, for his birthday, his little party with cupcakes and goodie bags Andy sent in with his backpack.

Nine years ago this minute I was in a hospital bed after having requested pillow after pillow because I couldn’t get comfortable and I wanted to create a soft nest for my new sweet little peanut and me.

I remember I wouldn’t let them take him away from me, not to the nursery, not anywhere.  When they told me they had to bring him to the nursery to weigh him or whatever, I walked along next to the little rolling bin they used and stood there over the people until they handed him back to me.

I am not saying I was right or wrong to do this, or that all the mothers who let their newborns sleep in the nursery are right or wrong – it’s just what I did.  I didn’t want to be away from him.  Not for the night; not for a minute.  I just wanted to hold him and nurse him and watch him and marvel at him.

And so I did.

Almost all the schools in the Capital District were closed today, but not Wildwood, Jonah’s school.  Kids are bussed in from so many different school districts that sometimes the school stays open and just takes whatever kids make it in.  The Albany City School District was closed, so the busses didn’t come, but Andy drove him in, cupcakes, goodie bags, and all.  I think my son was literally one of a handful of students in the whole place today.

And just like M prayed for me, Jonah had a very good day at school.  I’m sure there wasn’t much of a party, and he was tough to handle both before and after school, but what I asked for was that he have a good day at school, and that’s exactly what I got.  He had zero aggressions.  Thanks, M, for praying it into reality.

Now that we are placing Jonah in a residential educational school, I think maybe there was a reason I clung to him like a burr when he was first born.  I think maybe it was because something deep inside my heart was telling me I wouldn’t be able to hold on to him for long – that we would lose him, in a sense…that he would have to go away.

Jonah doesn’t know it’s his birthday,  but for the first time ever there was no family birthday party, like every other year in our finished basement, Aunt T’s unfailingly delicious homemade chocolate cake the centerpiece of each celebration, its recipe passed down from her grandmother, always iced in chocolate too — a hand-decorated Happy Birthday Jonah squeezed in sweet blue icing next to a questionably identifiable drawing of a whale (Jonah’s home for three days in the Bible).


This site is one of many that tells the Story of Jonah.

“As Jonah is sinking into the sea, a big fish (whale) swallows him. (Jonah 1:17) Here we see God’s great mercy. He could have let Jonah suffer the consequences of his actions and drown. Yet, God intervenes and spares Jonah’s life. We often complain to God about the consequences of our sins but do we ever wonder how often He has spared us from consequences? I rarely ever think about that.”

I know I have been spared from many, many consequences.  But for the first time ever there isn’t a celebration around this day.  There’s too much behind it.  Around it.

And, just like the day he was born, I don’t want to let go of my little baby boy.

 

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on a tear, and a triangle

Posted in autism, behavior, Uncategorized, Wildwood, tagged on March 3, 2011| 1 Comment »

There isn’t really any good news to report.  Jonah’s been “on a tear,” as Andy describes.

Andy’s had to hold him and give him rides to and from school randomly this week because Jonah tried to attack him, the bus driver, the bus aide, or went all hysterical crying and wouldn’t get on the bus.  The teachers at school write things in the log book that, as always, attempt to underscore things that went right during the day as opposed to focusing on his behaviors, but they of course also tell us about the aggressions and what they’re doing about them. Today they must have battled so many aggressions they lost count because instead of naming a number as usual, they simply wrote “several.”

I’ve got a freelance writing project to complete and just one week to do it, so I only stopped at the house briefly today to drop off some birthday presents my dad got Jonah for his birthday (he’ll be 9 on March 7th) and assemble some birthday goodie bags to send into school on Monday for the little party they’ll have for him.  For the few minutes I was there, Jonah walked around agitated, swatting the air with his hand and cocking his arm as if ready to hit, for no apparent reason, anyone who dared cross his path.

At one point Andy, in his dry manner, commented:  this is him being good.

So now here I am, trying to do my writing work as fast as possible so I can help Andy care for him this weekend, but the software system I’m using to submit the writing is so slow that I actually have time to create this blog post between the pages that are loading at a snail’s pace.  Grrrrrrr.

Yesterday I drove to Syracuse and then Ithaca for my day job to train some newspaper peeps.  On the way home I passed a town sign that made me laugh aloud, so I simply had to turn around, pull over, and take a picture of it.

If you don’t have my sense of humor, you’re going to ask why the hell I took this picture.

But if you “get it,” maybe you’ll laugh too.

God knows I needed a laugh.

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smiles in the midst

Posted in autism, behavior, placement, The Center for Discovery, tagged , , , , , on March 1, 2011| 2 Comments »

Yesterday we found out that Jonah was accepted into Tradewinds – but they don’t have any openings until at least June.  We’re glad he’s been accepted and are going to tour Springbrook on the 9th, which was my favorite place (on paper, anyway)…then we will visit The Center for Discovery (the farthest away from our town) later this month. 

Jonah has just gone back to school after a week’s vacation – it was tough on Andy, the vacation, and I tried to help a little each day though it was not much help, considering I work full time.  Andy was stuck with the aggressions and the endless requests, the poops and the thousand baths a day and the attempts to get Jonah to eat healty foods, the cleaning and the playing and the getting him to bed. 

Yesterday, right out the box Jonah had 4 aggressions at school and one on the way home on the bus.  He’s been swatting a lot again lately while saying the word “swat,” something he’d stopped doing for a while.  We got the dosage of Risperdal lowered again and quit using the Klonopin – it’s this constant guessing game of drug combinations. 

It reminds me of that movie Awakenings.  From Wikipedia:  

It tells the true story of British neurologist Oliver Sacks, fictionalized as American Malcolm Sayer and portrayed by Robin Williams who, in 1969, discovers beneficial effects of the then-new drug L-Dopa. He administered it to catatonic patients who survived the 1917–28 epidemic of encephalitis lethargica. Leonard Lowe (played by Robert De Niro) and the rest of the patients were awakened after decades of catatonic state and have to deal with a new life in a new time.

The problem is, the drug didn’t work consistently and the patients began regressing back into their lethargia.  The Robin Williams character desperately tries all different combinations of the drug he’s using, first less of it, then more of it, and all the while his patients are slipping away, eventually back into their catatonic states.

Working with Jonah’s meds has the same flavor of frustation.

Yet, in the midst of the frustration and aggression, Jonah still has all his smiles:

 

And I do so love the smiles!

I’m doing a lot of freelance writing lately, so my posts may be few and far between for a month or so…but I’ll try to keep you all posted on everything that’s going on.  Happy March!

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days are long; we carry on

Posted in autism, behavior, placement, singing, Uncategorized, tagged , , , , , on February 22, 2011| 1 Comment »

“If we fell inside a forest
Would it make a sound?
It doesn’t seem there’s anyone around;
Days are long, we carry on
But still don’t understand…”

~ Hang On, Guster

I won’t go so far as to say we “won the lottery” on Monday, driving Jonah to and back from Tradewinds, but it sure could have been worse.  For the most part Jonah was okay, except for two times when Andy rode in the back with him because he was hitting the window and acting squirrelly.  Plus he kept saying Simon?  Simon? Simon? at ritualistically annoying intervals (Simon is a friend’s little boy Jonah almost never encounters).  We’ve learned to just agree to whatever he’s going on about, in general, so there was a lot of either Andy or me saying Yeah, Simon! That’s right, buddy!

We’d brought lots of snacks and had fed Jonah breakfast, so the ride out was an odyssey of peanut butter crackers, cheetos, and Sun Chips with sips of Elmo juice boxes and lots of crumbs in the backseat.  When we arrived we were thankfully greeted quickly; Jonah was obviously confused, I’m sure hoping we weren’t at some new doctor’s office.  He attempted to go right back out the door, mumbling “home,” then tried to climb his dad, but we managed to get him to walk down the hall, out a door, down a path, and into one of the residences where several staff members were waiting to meet and observe him.

We weren’t there for long.  Jonah didn’t really want to explore and seemed nervous, though he didn’t attack and we managed to answer some of the staff’s questions while watching him.  Jonah briefly played with a bead runner and sat on a couch, then again asked for “car ride” and “home,” so we went back through the school building to the main entrance, said goodbye, and started home again.

Andy and I have a hard time discussing details about the residential educational places we tour.  It’s a surreal experience, touring and choosing a place to leave your child in others’ care…not for a few hours, or a day, or a weekend, but for some indeterminate amount of time – months?  Years?  We don’t even know.  So I just asked Andy what he thought of the place and he briefly responded in the positive; we drove away from Tradewinds with Jonah in the back innocently asking for swim pool?  swim pool?  train?, not knowing his very life and future are being decided by his two scared parents in the front seat.

This whole week is vacation for Jonah, so Andy’s got his hands very full.  It’s hard to describe an entire day of caring for Jonah, not to mention with the limited options imposed on them by the cold, the aggressions, and Jonah’s ever-increasing capricious nature about what he wants to do, where he wants to go, what he wants to eat…you name it.

We don’t know if his latest med change has caused him to act more unsettled, but Andy tried the klonopin with Jonah a few times as needed and it only seemed to make Jonah even less able to focus and function – so he stopped using it.  Tomorrow I’m going to call the psychiatrist who prescribed the meds and see what he thinks.

All this week I’m going straight from work to the house to spend some time with Jonah so Andy can have a little break.  Of course they are also going to my mom’s every day, but she hasn’t been feeling well and Jonah doesn’t want to stay that long lately.

When I arrived today Andy told me Jonah had barfed three or four times but didn’t seem sick.  One of the bummers of Jonah’s level of autism is he doesn’t know enough to run to the bathroom and puke in the toilet.  He just lets go wherever he is, and the best you can do if you suspect it’s coming is to chase him around with a bag or a bucket.  If you’re alone with him, you’re cleaning in one spot while he throws up in another.  It gets old quickly.  And besides being sick all over the house, Jonah also was aggressive all day.

When I got there around 5:15, Jonah was in his room on a time-out.   He was glad I came, so when he’d served his time, we started playing in the bedroom, his recent choice for a fun place to play.  He seemed fine, jumping on the bed and singing along when I invented songs, tickled him, and took his picture with the camera.  I’d brought him some colored straws with sparkly strands hanging off them and he clutched them happily, waving them around.

Andy said he’d been saying mama’s comin’ all day, so I was glad he was a good boy for me and enjoying himself so Andy could have a break, albeit a short one.

I’m sure Andy’s looking forward to Monday like never before; in the meantime, I’ll help as much as I can.

Next month, it’s on to Springbrook.  Until then, we, especially Andy, will be getting through the long days, carrying on, one minute at a time.

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dr. jonah and mr. rain man

Posted in autism, behavior, placement, Uncategorized, tagged , , , , on February 20, 2011| 1 Comment »

Roger Ebert, the famous film critic with whom I sometimes disagree but almost always respect for his reviewing and writing skills, says the following in this excerpt of his review of Rain Man (1988), which he gave 3 1/2 stars (out of 4):

“Rain Man” is a project that Hoffman and Cruise have been determined to bring to the screen for a long time. Barry Levinson came on board after three previous directors signed off on this material.

The problem, of course, was Raymond. If fiction is about change, then how can you make a movie about a man who cannot change, whose whole life is anchored and defended by routine? Few actors could get anywhere with this challenge, and fewer still could absorb and even entertain us with their performance, but Hoffman proves again that he almost seems to thrive on impossible acting challenges. “You want taller?” he asks in the audition scene in “Tootsie.” “I can play taller. You want shorter? I can play shorter. You want a tomato?” And he can play autistic.

At the end of “Rain Man,” I felt a certain love for Raymond, the Hoffman character. I don’t know quite how Hoffman got me to do it.

He does not play cute, or lovable, or pathetic. He is matter-of-fact, straight down the middle, uninflected, unmoved, and uncomprehending in all of his scenes – except when his routine is disrupted, when he grows disturbed until it is restored. And yet I could believe that the Cruise character was beginning to love him, because that was how I felt, too.

I loved him for what he was, not for what he was not, or could not be.

That last sentence moved me, and I admire Ebert for coming to that insightful conclusion.  I remember seeing the movie when it was released (I was only 19 or so) and being impressed with it, but until I had a son with autism and watched it again, I had no idea (a) how much greater an impact the film would have on me or (b) what an amazing acting job Dustin Hoffman did in somehow almost actually becoming a person with autism.

I do love my son for what he is – not for what he is not, or cannot be.

Even when he is alternately a fun-loving, happy kid and next minute a scratching, biting aggressor.

Yesterday was not a good day for Jonah.  Twice I went to the house – the first time to give Andy a break because Jonah’s behaviors had been ramping up and he’d attacked Andy – he ended up attacking me too toward the end of my visit; I have three rake-like scratches on the side of my cheek to show for it.

Just minutes before, we were playing and singing on the bed and he was asking for “black camwa,” which usually means he wants me to take some pictures.  (Sometimes he insists on “no camwa” or will ask for “grey camwa” which is an older camera I let him use)…


The second time I went to the house was when Andy called me to say that Jonah had broken his glasses and he needed me to ride with them to LensCrafters to get them fixed.  So we drove to the mall and I waited with Jonah in the car while LensCrafters, with their usual speedy service, fixed the glasses in no time.  Andy didn’t tell me exactly what had happened and I didn’t ask, but when we returned and I left the house, I told him to call me if he needed me.

One of my best friends, K, was celebrating her 40th birthday with a party at a local restaurant last night, and Andy didn’t call, so I can only hope Jonah was better for him for the rest of the evening.


You can’t see the scratches Jonah made on my face in this picture, but someone at the party thought I had lipstick on the far side of my right cheek, then looked more carefully and asked me what happened.  I explained very briefly and then un-tucked my hair from behind my ears so it would hide the scratches.  It was a fun party and I didn’t want to start talking about Jonah; when I do, I usually try to add some humor because otherwise I’ll likely cry.

In a few minutes I’ll call Andy to see if he’d like a break for an hour or two today.  I’ve taken on a lot of freelance writing work lately, which is great, but now I’m extra busy when I’m not at “real” work.  I’m grateful I’ve got tomorrow off so I don’t have to take the day off –  in the morning Andy and I are driving Jonah to Tradewinds to be assessed; I’m sure the trip will provide plenty of blog fodder.

Plus there’s supposed to be snow today and tomorrow – not a whole lot, but enough to make the trip an extra special pain in the ass, I’m sure.  Maybe Jonah will be fine and everything will go swimmingly.

Like the lottery commercial says:  Hey, you never know.

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Tradewinds

Posted in autism, behavior, placement, singing, Uncategorized, tagged , , , , on February 18, 2011| 3 Comments »

Yesterday, Kathy (a social worker from Wildwood) picked Andy and me up as soon as we put Jonah on the bus and we headed to Rome, NY to tour Tradewinds, a residential facility for disabled children.

I sat in front and babbled like a Chatty Cathy doll the entire trip there – partly to avoid thinking or talking about what we were doing, partly because I’m just kind of a blabbermouth sometimes.

The facility is very nice – a series of 6 houses with 6 kids in each house; every child has his/her own bedroom.  No tubs, though, just like St. Colman’s – only showers.  I wonder if that’s a drowning danger thing.  You couldn’t drown Jonah if you wanted to; I think he has gills. 

At any rate the people were nice and informative and they asked us a million questions about Jonah and then showed us the house and the school building, then explained how they take the kids to the pool on Tuesdays and Thursdays at the Y, and on various outings and trips whenever possible.  They don’t, however, have any openings until at least June.  We’re touring Springbrook in early March and The Center for Discovery in late March.

When the tour was over I asked to sit in the back of the Kathy’s van.  Andy thought I was just being nice because I’d sat in front on the way there, but really I just wanted to sit back there and cry.  As a result it was a much quieter trip back; Andy’s not the talker I am, and aside from my blowing my nose as quietly as possible, most of the sounds in the car were in my head:

How can we do this?  How can I live this far from my child?  Will he be scared and freaked out and panicked when we drop him off that inevitable day and then leave him there like some abandoned dog? 

It’s not like he will understand if I say “mama and daddy will be back in a few days, sweetheart.  Mama promises.”

Andy and I are going back on Monday to bring Jonah so they can assess him.  I have the day off from work and Jonah has the week off from school, so it’s a good day to go.  It may be a nightmare getting him to stay calm for the car ride, but we bought one of those bus harnesses for the car so it should at least keep him safe for the trip.

When we returned from Tradewinds and got Jonah off the bus, I grabbed his bag to see what they’d written in his log book:  4 aggressions that day, and he seemed unsettled.  I hate the log book.  I know it’s necessary and they always include something positive, but I hate it nonetheless.  And yet I want to read it right away.  I don’t know what I expect them to tell us one day:  Amazing news to report!  Jonah was perfect all day; he started a whole conversation on a new theory he’s postulating on astrophysics, sat still and solved college-level calculus problems on his own, sang an aria from Mozart’s Marriage of Figaro, prepared a 4-course gourmet meal for lunch, and counted 246 toothpicks when the box fell on the floor; we now think he’s a savant and should be transferred to a school for geniuses.

Okay, so I’m being just a little facetious.

Lately I have been spending more and more time with Jonah, inventing games and running around and just spending time with him. 

He loves his slinky (he has several) and those bouncy balls you can buy for a quarter on the way out of the grocery store.  And Wednesday evening we played on the bed, jumping and hiding under the covers and singing.

We do so love our little boy.

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nobody wins

Posted in autism, behavior, grandma, placement, Uncategorized, tagged , , , , on February 15, 2011| 3 Comments »

Yesterday Jonah had another appointment at the child psychiatrist.  Andy and I tried to time it so I’d get there first to check him in, meet the social worker from Wildwood, and then Andy and Jonah would meet us there so Jonah wouldn’t have to wait (thus hopefully decreasing the chances of him flipping out).  It worked out pretty well.  Jonah did a very good job of staying relatively calm for the small amount of time the doc and a med student observed him- then Jonah and Andy left and I stayed behind with the social worker to talk to the doc. 

Doc wanted to change Jonah’s meds a bit – increase the risperdal by a little and remove the atavan PRN (as needed) and replace it with klonopin PRN.  When Andy and Jonah left, he wrote the scripts up and I explained that we were going on a tour of Tradewinds on Thursday.  Then I asked a “what if” question I’d been thinking about:

“What if we find the magical mix of meds and the aggression goes away?  Do we still place him?  Does he still need residential care?  Do you ever hit upon the right cocktail of meds and fix the problem?”

“Occasionally,” he answered, “but I wouldn’t get your hopes up.  Usually we can mitigate the symptoms for a short time.  But the decision is up to you.  Remember, the choice is yours.  If you place him, you can always take him back home.” 

Sigh.

I don’t like this kind of decision-making.  This ‘playing around’ with the course of my child’s whole life.  When I dropped the scripts off at the pharmacy and stopped at the house, I talked to Andy about this.

“He definitely needs to be placed,” Andy asserted. “I can’t even handle him anymore.”  At least he isn’t arguing with me – we are on the same page about doing the best for our son.  But how can we really know what that is?

Jonah’s log book from school reads like a roller coaster.  On Monday he had 6 aggressions.  On Tuesday he had only one.  Wednesday he scratched a peer.  Thursday he threw a toy at a teacher.  Friday he tried to throw a computer. 

I hate the inscrutability of it all. 

I hate the way my mother is falling apart over this; she doesn’t eat right, isn’t sleeping, and some days she just cries all the time.  She refuses my help to find her a therapist or get on some medication.  I can’t help her accept this and I feel like I have become her scapegoat and I hate that too.

Both she and Andy have indicated that they want to pack up and move to wherever Jonah is placed, when it happens.  I don’t know if they just said that, if they really meant it, but I must stay here.  I have a good job that pays well – much more than I could ever make in Oneonta or Utica.  I carry the health insurance for all of us.  I am the one who has the means to set up a special needs trust for our son, to draft a will, to set up life insurance, to afford a mediator for our separation, to maintain a home Jonah can come back to if and when he is able to do so. 

It all makes me feel abandoned.  I lose my child, my mother, my child’s father. 

I lose.  (Not that there are any winners).

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the speed of dark

Posted in autism, behavior, language, singing, swimming, Uncategorized, tagged , on February 13, 2011| Leave a Comment »

“I do not think God makes bad things happen just so that people can grow spiritually.  Bad parents do that, my mother said.  Bad parents make things hard and painful for their children and then say it was to help them grow.  Growing and living are hard enough already; children do not need things to be harder.  I think this is true even for normal children.  I have watched little children learning to walk; they all struggle and fall down many times.  Their faces show that it is not easy.  It would be stupid to tie bricks on them to make it harder.  If that is true for learning to walk, then I think it is true for other growing and learning as well.

God is supposed to be the good parent, the Father.  So I think God would not make things harder than they are.  I do not think I am autistic because God thought my parents needed a challenge or I needed a challenge.  I think it is like if I were a baby and a rock fell on me and broke my leg.  Whatever caused it was an accident.  God did not prevent the accident, but He did not cause it, either…. I think my autism is an accident, but what I do with it is me.”

~ Lou Arrendale in The Speed of Dark by Elizabeth Moon

The Speed of Dark is the only book I can think of that, when I got to the end, I was so disappointed there was no more to read that I just turned back to the beginning and started reading it again.  I’ve re-read it a bunch of times since; it takes place in 2030 or so and its protagonist is Lou, a man with high-functioning autism who must decide whether or not to undergo a new procedure which can make him “normal.”  I got the title of this blog from that book.  I’ve thought a lot about what it is to be “normal,” and what that choice must have been like for Lou.

Sometimes I wonder what Andy and I would do if there was a procedure like that available right now – something that could make Jonah “normal.”  I suppose most people would be surprised that I really don’t know…that it would not be an easy choice…that although I can’t answer for Andy, I actually might not be able to choose to make him “normal.”  And I don’t really even know why.   Maybe it’s because I’ve never had a “normal” child and don’t quite know what kind of mother I’d be to one.

Jonah — the way he is and all that he is —  is all I know.  I suppose if I could have every bit of him except the violence and aggression, that’s what I’d choose.  I don’t know if I want to eliminate the part of him that has autism.  There is something magic in that.  Something pure.  Unassuming.  Uninhibited, nonjudgmental, and innocent.  I’d want to keep all that.

This weekend M has his kids, one boy (N, age 11) and one girl (J, age 6), Jonah aged right in the middle of the two.  I get along fine with both kids but am continually amazed at what they know- how they act – what they say and think and do.   I try to imagine what it would be like if Jonah could be here too…if he were like the other kids.  Would he play with N, since they’re close in age?

What kinds of things would Jonah like to do?  Would he still want to swim and sled and sing?  Would he still like the same things to eat?  What would he be able to say to me?  What subjects would he be best at in school?

I’d have a million questions and no answers.  Nothing new about that…


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happy birthday grandma

Posted in autism, behavior, tagged , on February 11, 2011| 2 Comments »

I have been in New York City on business (Wednesday and Thursday) and am back today. 

Wednesday also happened to be my mother’s birthday.  I had given her a card and gift from all of us before I left for my trip, but Andy and Jonah went to visit for her birthday.

Then Jonah had a flip-out and shoved her expensive television over, smashing it to bits on the floor.

Happy Birthday, Grandma!

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taking it all away

Posted in autism, behavior, grandma, placement, trains, Uncategorized, Wildwood, tagged , , , , , , on February 8, 2011| 2 Comments »

Oh, the irony.

I write a monthly column (also named Normal is a Dryer Setting) for the Capital District Parent Pages, which is distributed for free on the first of the month at several locations in and around Albany.  This means I have to write the columns nearly a month ahead of time.  My column for the February issue was devoted exclusively to how much Jonah loves one of the big malls here in Albany and how he has developed a specific route through the halls and stores.  For those of you who don’t read the Parent Pages, here it is:

Normal is a Dryer Setting – February 2011

Jonah’s been asking for “mall” a lot lately.  As I’ve mentioned before, we used to visit a lifeless mall with the singular purpose of escalator riding.  But now his version of “going to the mall” involves a different, specific shopping center and a highly specialized course that cannot under any circumstances be altered in even the slightest way. 

I think he has lain awake nights craftily planning this path, for it is a winding trail through stores and hallways that’s as random as it is precise.  Yes, the escalator is still a huge piece of the puzzle.  However, unlike most children for whom a toy or music store is the desired goal, Jonah’s all about the expedition.  In his little Zen-like brain of autism, the journey is the destination.  The upswing is that he doesn’t want anything that costs money; the downside is that if I want something that costs money, I’m out of luck, for there is no stopping – it’s a one-way express trip paced by Jonah’s caprice.

The trip to this mall means we must park near the side of a certain magnet store and go in through an exact entrance.  We have to pass certain racks of clothing so he can reach out and touch the soft sweaters and scarves, then walk behind a checkout station, around a store mannequin, and make a sharp left toward the venerated escalator.  Up we go, Jonah’s attention divided between the store lights and the sensory input from the movement of the ride;  at no point does he look down or pay any attention to where he is in the progression of the ride, yet he never fails to step off the escalator with perfect timing.  At the top is a vast array of huge-screen TVs, something I always expect to capture his attention, but no – he is already seeking the down escalator, leading us with confidence toward its return trip to the first floor.

Here we travel along another wall and enter the mall itself, where he skirts closely by a play area, mildly interested but not curious enough to enter, for there is another escalator at hand and that’s far more compelling.  We journey once again to the second floor, and here Jonah travels along the railing, up on its little step, holding onto it and sliding his hand along its smoothness.  God forbid someone is leaning on the railing or has paused to rest; there was a time he considered people mere obstacles to try to walk right through, but we’ve taught him to “go around,” so now he’ll let go of the railing just long enough to skirt by the bystander and grab hold of it again on the other side. 

After this, we reach his favorite store where, to reach its escalator, we have to evade such obstacles as cosmetics counters and perfume displays.  At the top, the path to the down escalator is tricky, involving an ungainly passageway of pushing through racks of coats, moving around men’s suits, and a risky bull-in-a-china-shop course past an exhibit of crystal wine glasses and dinnerware.  Unfortunately, and for some reason known only to Jonah, the intricate trail from this particular up escalator to down escalator is the one he desires to tour repeatedly, so we usually allow him three or four trips before store clerks begin to regard us suspiciously and we declare an end to this particular bit of fun.

Having survived the most challenging portion of our route, the rest is comparatively easy.  One more trip up the mall’s main escalator leads us right past a large toy store (something most kids would be unable to resist) and into another large magnet store – this one, though, possessing not one but two sets of escalators, allowing for three full floors of up and down excitement.  We inevitably exit the store on the second floor, where Jonah leads us directly past all the previously enjoyed meanderings, down one last escalator, and back into the original store, lovingly giving the same sweaters and scarves one last caress before heading unswervingly back to the original door where we entered perhaps 45 minutes ago.

It is a journey fraught with meaninglessness, but no more so, I think to myself, than your average shopping trip.  So off we go, having done nothing more than seeing the mall through Jonah’s unique eyes…which turns out to be doing quite a bit, if you think about it, after all.

I share this particular column for a reason.  There’s not a whole lot Andy or I can do with Jonah anymore that he enjoys, especially in winter (unless you include sledding, and even that has its bad days, like last time Andy took Jonah and he only went down the hill one time because some people with an unleashed dog were there, and the dog scared Jonah so he wanted to leave).  Jonah’s list of requests for “outside” activities have been narrowed down to car rides/train, the grocery store, going to see grandma, and the mall.  That’s about it. 

And now the activities have been further limited. 

Sunday afternoon, after I came over to play with Jonah for a while, Andy took him to the mall.  Nothing seemed different and Jonah was enjoying his route as usual, until they approached the children’s play area — and like a striking snake Jonah shot away from Andy and launched himself at a toddler, attacking for no reason, going right for the kid’s face.  Andy had no time to stop him; he could only intervene.  Thankfully the parents were calm and relatively understanding, saying their child wasn’t hurt, while Andy had no chance to even explain because he was busy wrestling Jonah to the ground and restraining him, then doing an about-face and getting the hell out of the mall as fast as he could.

When I stopped by yesterday after work, Jonah was just getting out of time in his room for attacking Andy. 

“We can’t take him to public places anymore,” Andy said to me with a look of defeat that hasn’t left his face in months.  I asked if there was anything I could do, but really all I can do is visit my boy as much as possible, play with him “downstairs” (our heated basement which he requests quite a bit), and soak up the time I have left to see him at a moment’s notice before he lives full time two hours or so away.

The child psychiatrist’s appointment we’d scheduled for the 2nd of February was canceled (due to that “huge storm” that never really materialized), so we’re going back this coming Monday to see if we can adjust his meds or whatever.  Then Andy and I have an appointment to tour Tradewinds in Rome on the 17th – if we like it, we’ll bring Jonah back so they can assess him.  Still waiting to hear from Springbrook. 

Last week we toured a respite home (Heldeberg House) on Western Avenue in Guilderland – they provide between 30 and 40 days a year for day or overnight care – but Andy has so little confidence in their ability to handle Jonah that we’re not even going to try it. 

The car, too, has become increasingly unsafe because Jonah can (relatively easily) unhook himself from that expensive 5-point harness I bought.  We’re looking into buying the harness that he uses everyday on the bus.  We need something he can’t get out of before he hurts one of us or makes us crash the damn car.

If I were the type of person who believed in a God with human-like attributes, a God who gives and takes and picks and chooses who to mess with, I’d yell at Him/Her:  What the living hell?  Why do you have to take everything away from our little boy?  Why do you have to keep piling on the shit?   When will we have had enough?

But I’m not that type.  I think Divinity is uncomprehensible and inconceivable by mere humans, and I like it better that way.  It’s the only way I can continue to believe in any kind of Divinity at all.  Not to mention there are hundreds of thousands of people on this planet in worse shape than we are.

And yet I feel the resentment rise again, the familiar angry frustration, the envy, the anguish. 

Fuck.

I am, at least, thankful that Jonah has a wonderful father who takes care of him with unwavering strength, determination, love, and patience. 

Silver linings and all that.  Thank you, Andy.

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