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trade offs

Posted in autism, behavior, placement, trains, Uncategorized, tagged , , on April 6, 2011| 6 Comments »

Some of our boy is back, now that we’ve got Jonah taking the original dose of Risperdal again, for fear of attempting yet another med or dosage that’ll throw him all out of whack.  It’s a strange thing to try this and that, feeling like you’re guinea-pigging your child, especially since you used to think you were anti-meds.  Desperation will bring you places you thought you’d never see.

After work I often go the house, and Andy and Jonah and I will take a ride to go see train, which Jonah enjoys again and seems to get excited about, but if a train takes too long to come along or we take a right when he wanted to go left, we pay for it in kicks and thrown shoes, screams and thrashing and incomprehensible demands.   It’s a trade off; we can have some of his personality and smiles back but the aggressions still aren’t mitigated very well.

But ah, the smiles…

They’re sweet, the smiles, and damn it he’s in there, the kid who swims and climbs and pours wood chips down the slide.  It’s great when the cloud of aggression parts and you see him smiling, playing, singing, joyful.  Even just calm, eating or watching train-on-TV.

He’s my precious little boy, and I want to snatch him up and plant kisses all over him, have him open his arms wide and hug me, say I love you, mama —  hold him close, snuggle into him on the couch, sniff deep into his hair and simply absorb the presence of him.

Springbrook hasn’t contacted us yet, so we’re waiting.  From Thursday through Sunday I’ve got a lot to do during long days at our annual spring convention at work, so I’ll be back after that’s all over.  It’s fun but exhausting, and I’m presenting a session this year so I’m a little bit nervous.

Please send Andy some “you can do it” energy, if you will.  My mom will try to help him, or at least feed both he and Jonah, and my cousin D will hopefully help too – but trust me it won’t be an easy weekend for him and I hope Jonah doesn’t give him a hard time.

Once in a while Andy’s got to catch a break, right?

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pictures of you

Posted in Springbrook, Uncategorized, tagged , on April 3, 2011| 2 Comments »

“I’ve been living so long with my pictures of you that I almost believe that the pictures are all I can feel.”  ~The Cure

We haven’t heard anything from Springbrook yet.

I’ve been having a hard time.  Sometimes when that happens, I take pictures of the smiles, the fun Jonah has doing what he loves; I focus on them and forget the rest…

And some oldies-but-goodies showing his adoration for water:

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this soon-to-be-snowy sh*t-smeared spring of ours

Posted in autism, behavior, Springbrook, Tradewinds, Uncategorized, Wildwood, tagged , , , on March 30, 2011| 3 Comments »

I carry my camera almost everywhere I go, so it was on hand today when I went to check the mail and saw three tiny, miraculous patches of what I think are crocuses.  Here’s one of the patches, pushing out of the brown, dead, winter-packed ground.

According to the weatherman, by Friday night they’ll be buried beneath a blanket of snow of as-yet undetermined thickness.

I don’t mind.  It can’t beat us down now, can it?  At least not for long.

It might do those crocuses in, though.

Yesterday Andy picked me up at work and we went to the meeting at Jonah’s School with the people from Springbrook, who had evidently arrived an hour or so before us to observe Jonah in his classroom setting.  I guess he did pretty well while they were watching him and attended to whatever task he’d been given, with just a small swat thrown in for good measure.  We stopped at the nurse’s office to sign permission for them to give him ibuprofen for his leg (he’s been limping a little on and off lately, something else we have to get to the bottom of)…and in the hallway there lingered the unmistakable aroma of poop, courtesy of our beloved child.

At some point, evidently after the Springbrook people left the classroom, Jonah either needed or requested the safe room and then decided to shit, dig around in his pull-up, and retrieve some of his freshly-pressed play-doh to smear on the walls.  I’m not big into text-speak but WTF?

We got the big-time aggressor.  Can we at least not have the shit-smearer too?

So while they cleaned him up and kept him occupied, Andy and I met with Wildwood staff and the Springbrook folk in a small office and they asked us questions about Jonah and we asked them questions about Springbrook and at first they kept directing all their questions at me

funny how people automatically turn to the mother for the answers about a child

and I told them Jonah was living with his father, and Andy was articulate and honest in speaking to them, and I emphasized how hard this was for Andy, and they nodded a lot in empathy and understanding, and I told them we liked their place best, we think

and I asked if they would tell us if and how and when they would take our son to live and be educated and nurtured and please love him some hour and a half away from us because we can’t do this thing anymore

and we never thought this would happen to us

and we feel torn and confused as hell,  sometimes guilty and often frightened, usually stressed

and almost always anxious

but they have to go back and have a committee meeting and they’ll probably be contacting us by the end of the week to let us know

and then we all shook hands and smiled

and Andy and I got back in the car.  I asked him if Springbrook accepts him, is that where you want him to go? and he said yes and we were quiet mostly as he drove me back to work.

As I walked up the stairs to my office, they were just about to sing happy birthday and serve goodies to the two March birthday peeps.  I smiled and dug into my cake with the rest of them, allowing the worry to fall behind me.  It’s something I have learned how to choose, a defense mechanism in my brain keeping me sane and functioning.

I usually can shed intrusive thinking like a dead skin; I’ve been led to understand that all that matters- all that can matter – is right now.

The end of the week will come, and they will either take Jonah or they won’t, and if they don’t, he’s been accepted at Tradewinds, and it will all happen the way it is supposed to happen whether I worry about it or not

in this soon-to-be-snowy shit-smeared spring of ours.


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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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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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