Posts Tagged ‘books’

When I was pregnant, I imagined a baby who’d grow into a reader like me.  So as my belly swelled, I read my favorite books aloud to him.   I’ll read to my baby every night, I thought.  He will grow surrounded by books, and we will love them together.

I bought him lots of books from The Book Barn in Latham, my favorite used book store, where it didn’t cost me a mortgage payment to create a child’s library.   And I did read to him every night, until it became apparent he wasn’t enjoying it at all.  He ripped up lots of books, my Boo.  He mangled them.  Jonah only wanted books if they played music, or had buttons to press and make sounds.  The rest of his library sat untouched.  Some of the books I gave to Jonah’s classrooms, and some to other kids.  Some I still have, here in the house.  They have his bite marks; some are torn.  I love them all.

A few weeks ago I couldn’t sleep so I got out of bed at 2am and ordered 7 or 8 books on www.amazon.com.  (When it is not 2am, I prefer to get my new books from The Book House, an independently owned local book store). So when I speak of these books I mean actual books, you understand.   Mockingbird and Out of My Mind were the first two I read, and both were amazing; remarkable.  Now I’m starting Wonder.  I am reading books again.  I read in cycles. For months I’d stopped, reading only newspapers, and now again I am voracious for books.

I like to hold print objects in my hands.  Books, magazines, newspapers.  There are the many unique papery smells, of course…musty & woody, shiny-new & linen-clean – and that same uniqueness in the feel of the pages –  recycled-rough, factory smooth, stained with coffee, crisp or yellow-thin…but there is also the added element of holding.  Print does not disappear at the touch of a button.  You don’t turn it off.   It is unsettling to me that print media is stored in cyberspace, an imaginary land where there is no semblance of anything sensory at all.   Hell, there isn’t even the pretense of it.   You hold a never-altering device, missing all these wonderful sights, smells, feelings.   I just won’t do it.

This blog is nowhere to be found in print, and that irony is not lost on me.

There are still people who don’t “get” (or perhaps have never even stopped to consider) the significance of the names Kindle and Kindle Fire.  They may as well have called the damned thing the Fahrenheit 451.  I do not have one and don’t plan to get one.  In fact I’m seriously considering a backwards move in the land of technology.  No cell phone, then no cable.   I’ll buy a Victrola and play 78s all day while reading in my rocking chair.  I’ll hold a book to my chest and hug it close, by my fireplace, glancing up to walls full of volumes, of albums, of plants.  I’ll be on 10 acres of woods, smack in the middle in a small cabin.  Animals everywhere.  The deer will eat out of my hands.  Okay, maybe not all those things.  But I shall have my books.

Boo never wanted bound pieces of paper that did nothing and meant nothing to him.  The most colorful, amazing illustrations couldn’t capture his attention.  I brought him to the library reading room toddler times.  As the other tots gathered ’round, criss cross applesauce, for The Cat in The Hat, Jonah ran up and down the long aisles of books, touching their spines, tap-tap-tap-tap-tap, screeching every so often.  I was an alien suddenly, thrust onto Jonah’s planet in a rocket I didn’t ask to get on and didn’t know how to steer.

We didn’t try the reading room toddler times again.

“Back then” (2004 or so) they didn’t have autism-toddler-time around here, which would have maybe been cool –to climb into a leaky boat with other parents who feel just like me and whose kids also want to tap-tap-tap on the books.  To not feel so scared and alone.

I feel scared and alone again.  I feel tired.  The tired of a waning moon.

Yet Andy drove Jonah up today and we had a good visit; Boo was lovey, laughing, and demanding all at once.  Two baths, two attempts at driving to train (neither successful), many kisses.  Jonah’s laughter at jokes of which he is both author and audience.  It was a good day.



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It’s 7am and Jonah’s already attacked me – he asked for “train-a” (he’s been putting an “uh” sound on the end of a lot of his words lately) so I told him it was a school day but we could go to see the train after school.  This is a pretty standard conversation in our house so I didn’t expect it when he tore at my face, scratching me near the corner of my eye and mangling my glasses.  For the second time since I bought them on October 23rd, I’ll be at Lenscrafters today to get the glasses fixed.   I think I’m going to be their best customer.  Now the almost-brand-new glasses are really mangled – no matter how I try to push and pull them back into shape they sit crooked on my face.  I look and feel like a broken doll.

It’s “special persons day” at Jonah’s school which means both my mother and father will be there, and Jonah’s classroom is preparing a special Thanksgiving feast; I pray to God and little baby Jason that Jonah’s a good boy, at least for most of the time.

This past weekend Andy took care of Jonah (with help from my mom) while I went to NYC for an adoption conference for work.  Because I am adopted I especially enjoy talking to the prospective adoptive parents, agencies, and attorneys – I was an exhibitor at the conference because we facilitate adoption advertising, and because I did not have Jonah for a day and a half I enjoyed the guilty pleasure of freedom.  In addition to manning an exhibitor table, I was on a panel of parents who spoke about “raising a challenging child.”

All the other parents on the panel had adopted special needs kids – the kids had separation trauma, fetal alcohol syndrome, bipolar disorder, you name it.  One couple had actually adopted 15 kids (!), 3 of which they had to place in a home because of violent or out of control behaviors.  Jonah’s all I’ve got, and to place him is something so hard to comprehend that I’m wild to try everything/anything else we can, as quickly as we can, to seek another way.

Would I have deliberately adopted a special needs child?  My first reaction is to say hell no, but when I was pregnant I told God (naive little big-bellied me) that He could give me a disabled child or a gay child, that I would be okay with either.

My running joke now is that Jonah is probably both disabled and gay.

Someone I met on an autism group on Linked In sent me an obviously self-published book they wrote about their “journey home from autism” – and a children’s book they’d written as well.  Very kind, to send me the books for free, and I haven’t read them yet, but I’m going to use this as an opportunity to bitch that I’m tired of the whole Jenny McCarthy “you too can rescue your child from autism” schtick.    Most of the time I think these “rescued” children were mis-diagnosed in the first place.  I believe that 50 years from now it will be apparent that what we now call “the autism spectrum” is actually about 10 different things.  Jonah was unquestionably born with autism- our family physician noticed issues before he’d even had his first immunization, and in hindsight I can easily see how he was very different from neurotypical babies.  How can that be the same thing as the child who develops normally for however many months, gets a shot, and suddenly “falls off the planet,” losing all his or her social, verbal, and other developmental accomplishments?  It can’t. The symptoms might mimic each other but the underlying cause and condition isn’t the same.

If anyone had figured out a real, viable way to “rescue” these kids from autism, we’d all be on that fucking bandwagon, trust me.  But what works for one child doesn’t work for another, and the “here’s our amazing story of how we  pulled our precious child out of the bowels of the hell that is autism” books are a dime a dozen nowadays.  You can’t throw a stone at a bookstore without hitting something written by people who want to share the inspirational tale of tirelessly helping their child become “normal” again.

The parents of kids with autism don’t need to feel guilty about what the Superparents accomplished that for some unknown reason the rest of us haven’t been able to.  Since the market is flooded with these Superparent success stories, I think what parents need is for someone to write: this sucks, and I don’t know what to do either, and I’m trying hard, and I’m afraid, and I understand, and I’m in the same boat, in the same perfect stormI’m drowning too.

I understand.  I’m drowning too.

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