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Archive for the ‘singing’ Category

It’s Saturday afternoon and I’m on the train headed to NYC for an all-day Adoption Conference tomorrow, which I love.  I’m an adoptee who also understands the frustration of not knowing when (or if) something is going to happen, so I can relate to the people who attend.  I enjoy helping them, listening when they need it, and sharing their joy when they find a child.

I have a heavy heart, though, because yesterday morning I opened the Albany Times Union, and on the front page was an article about the passing of Ned B. Fleischer, my high school chorus teacher – the man who nicknamed me “The Winklett” at age 14 when I was a geeky, awkward, skinny freshman at Shaker High School, class of ’87.  I’ve been winklett everywhere ever since.  That article didn’t say how he died; another one only said he was “stricken.”  Stricken.  I wavered on my feet, shaking, put the newspaper down on the counter, and realized I’d been holding my breath.  Stricken.  Gone.

Frustratingly, there was no wake/funeral/obituary I could find, even though I called the reporter who wrote the article, hoping he’d have the contact number of someone I could ask.  I left a message for him to please call me back.  I’ve yet to hear from the guy, and that was Friday of last week.  Well who the hell am I, anyway?  Nobody.  Just one of hundreds – maybe thousands – who’d really appreciate a way to mourn a man who made a tremendous difference in their lives.  Before I left Facebook, I was in the “Ned Fleischer Fan Club” and understood exactly why everyone else was too.

Mr. Fleischer was one of those rare individuals you can’t pigeonhole or categorize (I can’t help but revert to what I called him when he was my teacher; I never could refer to him as Ned).  He was perpetually tanned – a swarthy, slight figure with an aura of mystique.  He could be peevish and moody.  You’d ask him a question and he’d nod and say “no” simultaneously, just to throw you off.  He had this uncanny way of figuring people out – discerning what he could expect of you and demanding exactly that, without cruelty or condescension.  High school kids’ egos are frail.  He knew not to crush sensitive youth but rather to build us up, through persistence and integrity and damn hard work – work to which he was unfailingly dedicated.  Equally dedicated because of it, we rose to his expectations.

He nicknamed us.  He reveled in the process of orchestrating a new combination of people every year – a new set of personalities and voices to blend into songs.  We gave him our all.  Something made us want to please him – perhaps the confidence he bestowed upon us as both trophy and duty – perhaps the way he’d lend an ear when you needed one, because he genuinely cared.  He was counselor and confidante to me more than a few times.

He’d sit with me in his office, cigarette lit in the ashtray, gifting me with his full attention until the cigarette had a four-inch ash on it because he hadn’t smoked it at all.  He was too busy listening.  Finally, he’d take a final puff, press it out in his glass ashtray, and utter something wise – sometimes soothing, sometimes not at all.  But after a talk with him, I always felt validated.  He made me feel like I was somebody.

Every one of us learned the language of his looks:  Sarcastic.  Angry.  Proud.  A heavy glance from him could mean anything from Nice pitch to Enunciate! or Smile!

To let him down was unthinkable.  It simply wasn’t an option.

While I understand his family’s decision to hold a private funeral, I know I can’t be alone in longing for a way to gather, mourn, and honor him.  So many of us loved him.  And while I respect Shaker High School’s request for mourners to refrain from placing memorabilia or candles, etc. on the school grounds, I long to return to the chorus room, sit at his bench behind the big black grand piano, cover its surface with flowers, and cry my eyes out.

I was lucky enough to sing in Melodies of Christmas all four years of high school; back then, it was always the Shaker High School Chorus who did Melodies.  Even in the subsequent years when they chose kids from various high schools to perform, Mr. Fleischer remained their leader.

During I think three of the four years we sang Melodies, we ended the show with The Halleluiah Chorus.  There was nothing in this world more beautifully fulfilling, more excitingly breathtaking than singing that amazing piece of music with a full chorus, orchestra, audience, and Mr. Fleischer’s let’s do this intensity at the helm.

The Halleluiah Chorus was a climactic apex of all the hard work, of months of singing-while-smiling, learning, laughing, memorizing, struggling – of doing it all over and over and over again.  Melodies of Christmas was a long performance in front of a live audience, 60 of us or so collectively standing tall and singing full, from the diaphragm, diction trained into sharp consonants and cool vowels, eyes and mouth smiling despite heavy red chorus robes under hot lights.  By the last song, Handel’s Halleluiah Chorus, we were exhausted…and yet exhilarated.   It was this final, from-the-gut push upward into flight – Mr. Fleischer in the lead, all of us lifting and v-ing out behind him on wings of The Messiah.  God it felt good.  Like magic.

To be honest I was a decent singer at best.  My voice peaked around age 10, then settled into a mediocrity which was on pitch, but breathy and limited.  Shaker High School had a special “select chorus” of 10 or so of the best voices in the general chorus.  Select Chorus had special rehearsals and performances, and we all wanted in.  I tried out too, auditioning for a position among the elite.  Mr. Fleischer never encouraged me not to, and he never implied I couldn’t do it, even though I knew I couldn’t.  With blind hope and stubborn persistence, I auditioned every year.  Though I did my best, I never did make it into the select chorus.

It didn’t help that two girls in particular, P.D. and A.E., both one year ahead of me, had voices like angels –and not only led the select chorus but won all the leading roles in every musical as well.  I couldn’t even be upset about that.  These were girls you’d pay money just to hear sing something.  Anything.  They really were that good, and were pretty and stylish too.  I envied them not only for that, but also for the extra time they got to work with Mr. Fleischer, who must have loved such incredible vocal instruments to shape into maturity.  I still think about them sometimes.  I can still hear their rich, clear, beautiful voices.  I wonder if they continued to sing.  I hope so.  Damn, they were good.

I went back to visit Mr. Fleischer only a few times.  He’d recognize me immediately, greeting me with a joyful shout — The Winklett!

I hope I can find out where he is buried so I can visit his grave, at least, just to sit with him.  I always took it for granted I’d see him again.  One more time.  One more visit.  One more Melodies.

Goodbye, Mr. Fleischer.

You are loved, and you will be deeply missed.

“Look around you. There is not a life in this room that you have not touched, and each of us is a better person because of you. We are your symphony. We are the melodies and the notes of your opus. We are the music of your life.”

~ Mr. Holland’s Opus

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Yesterday Jonah required a “two-person takedown” at school. 

Whenever there is a “two-person takedown,” they are required to call a parent to explain what happened.  When my cell phone rings at work and I see their area code, my heart always jumps and then sinks, diving down into a numb place before I answer.  I don’t want to hear it.  I don’t want to know it.  I want to be ostrich-mom and I can’t, and I want to believe he doesn’t hurt anyone anymore, but he does.  Not nearly as often as before, they tell me, but I hate it just the same.  For me it is the worst aspect of his autism, by far. 

He was in music class, which I would imagine he’d love.  I don’t know what upset him but he became frenziedly violent.  He was removed from the music class and they attempted to bring him back to his regular classroom, but to no avail.  Hence “the two-person takedown.”

He breaks glasses and hits, scratches and tries to bite.  He fights dirty, no holds barred.  Then they calm him and he gets his proverbial shit together, but it is impossible to say for how long. 

The time bomb ticks.

People ask me how Jonah is doing.  A lot of people.  I appreciate it and their concern means so much to me, but more often than not I ask them to please read my blog.  I know that might sound insulting, or even mean, and I try to explain:  I can’t live this every hour of my life. 

If I tell the same story over and over again, I become depressed and anxious.  If I worry and perseverate on the craziness of it all, I can’t function.  So I set aside blocks of time to tell the tale through writing, which is easier, and better, and usually much more articulate anyway.  I apologize to the people who want to know about Jonah when I just don’t have it in me to talk about it, but I get the feeling they are hurt and insulted anyway.

I hate that I can’t hold my boo in my arms and rock him back and forth, singing to him and calming him.  But he is 9, not 2, and the whole point of the school is to increase independence and learning, so kids are not treated like babies just because their cognitive ability may be low.  I have to admit I would have continued to baby him had he not gone off to school.  I love him more than most people in my life know or understand.  But hearing about his anxiety, his meltdowns, his aggressions – it’s too much sometimes.  I don’t know what he understands and I don’t know what to do most times. 

I trust his teachers and caregivers to nurture and love him, but is that too much of an expectation?

The effect it has had on my mother, and on my relationship with my mother, is significant, to say the least.  Jonah is the only child of an only child, and to my mother he is the sun, moon, and sky.  He is her everything.  It makes me feel like I must compete with her to prove he is my world as well, but it’s so different for me.  For me, there is also deliverance from a life I couldn’t live anymore. 

I believe with my heart this is the best thing for my son. His best opportunity at independence – at freedom from whatever it is inside him causing him distress. At competency in life skills…at learning.  At life.  I assert this a lot in my blog posts, I know.  I have to.  I need it to be true.

But what if I’m wrong?

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“You must trust and believe in people or life becomes impossible.” ~Anton Chekhov

I changed my links page to add a few fun sites I found.  Please don’t take offense if yours was removed.  I may remove all the autism blog links and just link you over to fun and general mayhem. Or make categories, or something.

Speaking of mayhem, I was in NYC last weekend.  I’d won a sales contest at work along with office/teammate ‘Sister Sledge.’  It was to see a Yankee/Red Sox game, which was rained out.

The cool parts to me were the view from the Top of The Tower Restaurant at the highest floor of our hotel.  And the fact that I got to have a four-day weekend.  And also there was a U.N. meeting and we got to see all kinds of diplomats and limos; secret service, police escorts and that kind of stuff. 

Down the street were protesters with signs we were too far away to read.  

I think some of the UN peeps even stayed in our hotel.  The place was nice but not THAT nice.  Maybe the diplomats got the kick-ass rooms.  But staying in a hotel, having a day off, traveling – they’re treats in and of themselves. 

I love coming home.  Every time, without fail, I breathe deeper and easier once I know we’re headed back.  I’m just not a city mouse, I guess.  I’m too trusting to live in a big city – especially New York.

I have to trust.  With my boy so far away from me, I don’t really have a choice.  Andy is there and can take Jonah to his apartment, give him bubble baths and look him over.  If Jonah has a rash or his toenails are getting too long, Andy can report the rash and cut the nails.  Of course they won’t take care of him the way parents would – they have other kids to look after.  It’s as if Jonah’s suddenly the member of a family of several kids with autism and their many caregivers.  It could be a damn good reality show.  If nothing else, I doubt it would be boring.

I’ve been trying not to care that I don’t get to do all the little things with him anymore:  the everyday rituals:  cutting his little nails, giving him lots of bubble soap in his bath, singing songs with him as he gets dried off and dressed.

I miss watching him sleep.

In sleep, especially, he is indistinguishable from any other child.

Sweet dreams, mommy’s boy.  I’ll be there on Saturday with grandma and daddy to see you!

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My father and I went down to see Jonah today.  Armed with lunch, a couple of DVDs, a bag of toys and books for Jonah’s house, and one last donation to the upcoming fundraiser gala, dad and I set forth.  We talk easier than ever before, and share stories, and if the talk gets heated, or charged with emotion, it is okay.  It was not always okay, but it is now.  Now my relationship with my father is very good.  We chatted the whole way down and arrived just a few minutes before noon.

And so I give you this week’s “black soda” face, complete with crumb-on-lip:

And, of course, Jonah’s chosen swing:

“Mommy push?”  He asked, grinning.

I think his caregivers and teachers call me mommy, so that’s what he calls me now.  I still slipped and said mama, but I can get behind mommy – it’s a ‘nomenclature graduation’ of sorts.

His school encourages as much independence as possible, and they’re right to do so.  It was too easy for me to continue to talk to him (and treat him) more like a baby than a nine-year-old kid.  At his new school he helps do his own laundry, is almost completely potty trained already, and can attend to tasks in the classroom.  They really seem to like him.  It feels good, especially when they tell me about it.  His teacher wrote to me, in part:

“Jonah’s been doing very well adjusting to the classroom and staff…we all enjoy his presence a great deal. He’s a lot of fun to have in the classroom and VERY bright!  Yesterday was the first day we had some aggression since we’ve been back!!

 When we do group work, most of the time, he sits well and seems to enjoy the lessons. We’re all still learning so much about him and part of that is realizing when he needs to take a break from work.

Although he can sit and work with us for a while, there are times when he will get teary and asks all done work?  So now, we’re trying to figure out when he needs a break before he gets to that point.

When he does get a break, he is always good about coming back to the table and finishing the lesson.

 I can’t stress enough how much we all enjoy having him in the classroom!”

This was great to hear, aside from the aggression;  I enthusiastically forwarded her message to Andy.

I’m glad to know they are trying hard to understand what makes him tick.  I’m so happy when I get to see him — and I kiss, inhale, hug, hold him as tight as he’ll allow it – to carry with me until I can see him again.

It was hot on the playground today.   After we had our lunch at the picnic table, we went to the swing set and had  fun together, Jonah wanting to stay on his favorite swing.  Mommy push.  And push and push and push, higher and higher, singing Guster and pushing, Jonah sailing high in the summer-like sun.  Finally I snuck away to the shade and Pa kept him smiling:

One of his caregivers came out and said the best way to transition him when we leave is to go back inside the house with him.  It sounded reasonable to us, so this time when it was time to go, we said goodbye in Jonah’s room and then a careworker moved in and engaged him as we walked out.  Quickly.  Trying not to look back.

(Ripping the band aid off, as it turns out, was much easier than tearing it bit by bit).

On the drive back, my dad insisted on filling up my gas tank, even though I didn’t really need it yet.  Now that he’s gone and I’m home and it’s hours later, I’m reflecting on him and how, even when I’ve been mad at him, I’ve had to admit he’s a man of integrity.

An earnest, hard-working, genuine man.  A secret-keeper.  History lover.  A man with a work ethic.  A saver.  A man with an inner moral compass always pointing in the right direction – who’d always stop and defend another against hurt or hate.  Proud of his ancestry and family history.  A man who’d help you move and never take a dime for doing it.

A man who believes in giving people a chance and, if need be, a leg up.  He roots for the underdog and wants always to do the right thing.  When he says just try your best, he means it.  I think because he always tried his best.

He always tried.

If I had to pick a song to express him, inasmuch as you can ever encapsulate a person that way, I’d pick “Something Wonderful” from The King and I.

“This is a man who thinks with his heart,
His heart is not always wise.
This is a man who stumbles and falls,
But this is a man who tries.

This is a man you’ll forgive and forgive,
And help protect, as long as you live…

He will not always say
What you would have him say,
But now and then he’ll do
Something
Wonderful.

He has a thousand dreams
That won’t come true,
You know that he believes in them
And that’s enough for you…”

I’m grateful to have such a man as a father, and as a grandfather for my little Boo sweet boy.

I love them both very much.

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“The bear went over the mountain, the bear went over the mountain, the bear went over the mooun—taaain…and what do you think he saw?”  ~ Children’s song

I’m the mama over the mountain.  And I can’t help but feel bad for enjoying the view.  If I keep speaking in riddle and metaphor, maybe I won’t have to admit there is freedom and a calm happiness to my life now, and I like that.  I’m going to visit Jonah again with my dad this Sunday, but I skipped visiting him last weekend.

Instead I unpacked boxes from the apartment, did loads of laundry, watched tree surgeons cut up the giant maple killed by Irene, and visited my friend D at dialysis.  I watched Almanzo and Jack get along unbelievably nicely:

Jack’s such a big lummox his ball toy is a basketball:

And Almanzo loves to squeeze himself into boxes he’s a bit too big for:

(Andy will appreciate that, if he reads this.  Put the cat in the box…)

I did normal people things, got a lot accomplished, and felt as good as if I’d rested for a long, long time.

I really miss Jonah.  I was okay with skipping one weekend.

Are those things mutually exclusive?

Either Andy or I call every night to hear how he’s doing.  Lately he’s been aggressive, but they sound like they expect it and it’s nothing they can’t handle.  They like him, even, I think.  They think he’s bright. 

He’s funny, his teacher e-mailed me.  He’s such a pleasure to have in the classroom.  I don’t even care if she doesn’t mean it.  To picture him laughing and learning is wonderful.  I want to know he is happy and not hurting others.  And I’m looking forward to seeing him again; I’ll bring a picnic lunch for Sunday afternoon and hopefully it’ll be dry enough to swing and climb on the playground.

My father wants me to help guide how often he goes to see Jonah, at least for now.  He’s concerned, maybe even over-concerned, about whether his visiting will impede Jonah’s acclimation to Anderson.   My mother, on the other hand, is different about Jonah.  Every ounce of her wants to be with him, as much as possible, all day if she could.  She’s more of the just try and keep me away from my precious grandson type.

The fact that Andy lives five minutes away is key to everyone’s comfort level about this whole thing.  His presence in the same town is more appreciated than he probably knows.

Sometimes I feel guilty because I dare enjoy this new life where I’m not attacked every time I see my son.  I’m the mama over the mountain.  Selfish, maybe.  Surreal, definitely. 

And what do you think she saw? 

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My cousin D, her manpiece R, and I all took Jonah for a while late this afternoon – and Jonah was 90% fine.  I mean to tell you he was play-on-the-playground, leave-the-other-children-alone, sing-and-smile, cute-chattery fine.

Jonah’s made a liar out of me, especially since R’s seen Jonah only three or four times now and Jonah’s been pretty calm every time, directly contradicting almost everything I write here.  I’m more than happy to be this kind of liar.

I love happy Jonah.  I adore when he is gleeful and silly and playful, even though it’s rare and impossible to predict.  I’m grateful for today’s glimpse of the boy I know is in there – our sweet, beautiful boy.

Thanks, D & R.  You brought out the best in my day – and Jonah’s too.

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I don’t think you get to good writing unless you expose yourself and your feelings. Deep songs don’t come from the surface; they come from the deep down. The poetry and the songs that you are supposed to write, I believe are in your heart.   ~ Judy Collins

Music has always meant so much to me.  When I was pregnant with Jonah, I put headphones on my belly and played Mozart and Paul Simon and the The Beatles (I hadn’t discovered Guster yet) and all kinds of music, playing to him, speaking to him.  As soon as he was born I played music to him every day, and to put him to sleep at night.  He still cannot speak in anything but short phrases but he can sing entire songs.

Here he is, age 7, singing a Guster song called “Keep it Together.”

Now he demands Guster’s new album (Watch video #6!!!) when we’re in the car, requesting it by asking for Cranberry Guster, as I’ve said before.  I wonder why it’s Cranberry Guster to him.  My boy is such a wonder.

I have lots more to say, but only a moment more to type.  Guster is coming to town tonight and of course I am going – I’m so excited I wrote them an e-mail and also tweeted to them, inviting them to lunch. 

Boy, am I a geek or what?!  (rhetorical question)

Guster’s songs have ‘kept me together,’ and for that I am more thankful than they will ever know. 

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“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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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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“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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