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Archive for November, 2012

97X. Bam!

Posted in behavior, echolalia, grandma, language, Uncategorized, tagged , , on November 23, 2012| 2 Comments »

Raymond:  97X. Bam!  The future of rock ‘n’ roll.   
97X. Bam!  The future of rock ‘n’ roll.  
97X, Bam!  The future of rock ‘n’ roll.

~ Raymond Babbitt in Rainman

Oh, my sweet, precious little boy.  What a wonder you are!

This is the third Thanksgiving I’ve described in this blog.  Hard to believe..  The first was awful – so awful, in fact, that just days later I would check myself into a mental health facility, the second was fun (and was paired with two Guster shows, so how could one go wrong?), and yesterday, Thanksgiving 2012, which was easy-wonderful.

Andy was nice enough to drive Jonah up to Grandma’s house, and I met them there.  My boo came crashing through the front door, shrieking with happiness.  We ate turkey sandwiches; Jonah ate one and a hot dog as well, and chips, and bacon, and “white ice cream.”  He asked for train and we drove him there even though we knew Thanksgiving trains are few and far between.  All the way there my mom sat in the backseat with Jonah, but he kept asking mama in the backseat?  And my mother told him, “yes, sweetheart, as soon as we stop for the train.”  It made me feel good; usually he wants grandma in the backseat.

He also wanted music, and daddy turned up this station that he and Jonah enjoy: 92.3 FLY.  After one of the songs they announced the call station with snazzy-jingle-music and the deep voice and all.  Jonah immediately parroted it, really well, too, if I don’t say so myself.  92.3 – WFLY!  92.3 – WFLY!  92.3 – WFLY!  None of us could help laughing, which only encouraged him.  Giggling, he kept at it for a while, just like Rainman.

So there was no train, but I got to sit in the backseat with my Boo – and instead of telling me move (which means get as far away from me as possible and do not even look at me), he asked for hugs.  Over and over again he wanted hugs.  Bear hugs, he even said.  And so I reveled in this, moved close to him, wrapped my arms around him, and hugged tight, raining kisses on his Beatle-length hair.  More bear hug?  he pleaded, looking up at me sweetly.  Yes, Boo, I replied, hugging him closer, tighter, until it felt like we were one.  Oh thank you, I said silently.  Thank you.

And this week I get to see him again – tomorrow, which I hope will be as beautiful as today – and Jonah as lovey.

daddy-hugs

Before Andy and Jonah left, they came inside to get their share of a Thanksgiving dinner my mom had made just for the few of us.  So she had a bag with all their food in it, and Jonah and Andy were saying goodbye, when Jonah opened the freezer, snagged the rest of the bacon, put it into the bag of food, then looked up at us all as if to say “k, let’s go.”  Of course grandma let him take the bacon.

Mom and I had coffee afterwards and laughed at Boo’s adorable little ways.  We both had tears behind our laughter, but they were mostly good, happy, thankful tears.

We’ve plenty to give thanks for, that’s for sure.

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under my heart

Posted in autism, Uncategorized, tagged , , on November 12, 2012| 9 Comments »

“Not flesh or my flesh, nor bone of my bone
Yet still, miraculously, my own.
Never forget for a single minute
You didn’t grow under my heart, but in it.”

~ Fleur Conkling Heylinger

I’m preparing to go to Brooklyn this weekend to exhibit and maybe speak at an adoption conference.  I’m adopted, and I like to work with prospective adoptive parents.  I have a soft spot in my heart for them and love doing everything I can to help them complete their families through adoption.

Jonah is my biological child and the only blood relative I know, which is weird.  I do like when people say he looks like me.  And yet it never mattered that I didn’t look like my parents’ families (they really all do have similarities in their faces and mannerisms –  nature, not nurture).

Anyway, I’m looking forward to the conference, but also I’m more than a little hesitant to be going to New York City.  The City freaks me out under normal circumstances, but I’m frightened it’ll be eerie, too – a wounded place.

I am there to smile and bring hope to the people who file in to the conference, most of them brand new at this whole adoption thing.  Overwhelmed and emotional, they need a friendly face and maybe some tissue.  You cannot pry but you need to encourage.  I love meeting the people, meeting their frightened eyes with my reassuring ones:  don’t worry; your child will find you, I want to tell them.

So I won’t see Boo this weekend and in fact not until Thanksgiving, when we’ll probably bring turkey sandwiches down to Andy’s, and Jonah will beg for bath and grocery store, oblivious of the holiday.  I miss him already, and would gladly trade a big hug for a small slap.

My dad and I are going out to lunch tomorrow.  He’ll ask me how work has been going and I’ll tell him about the adoption conference.  I’ll bring along The Story of Amy, a red-cloth-covered cling page 70s photo album turned into a book by my parents.  My mother wrote in careful script-like print, using cutouts of congratulations on your new baby cards as illustrations:

The Story of Amy

Once upon a time there was a lady and a man named Mr. and Mrs. Wink.  They had been married for quite a few years.  They were happy and still young, but there was one thing wrong.  They had no baby although they always longed for one to share their home.

One day Mr. and Mrs. Wink said to each other, ”Let’s adopt a baby and bring her up as our very own.”  So the next day they called up the lady who helps people to adopt babies and babies to adopt parents, and said to her, “Miss Brown, we wish so much to find a baby who would like to have a mommy and a daddy and could be our very own.  Will you help us find one?”

Miss Brown said, “It will not be be easy.  Many people wish to adopt babies, and you may have to wait a long time.  But come see me and let’s talk it over.”

So Mr. & Mrs. Wink went to see Miss Brown and told her how much they wanted to adopt a baby.

Miss Brown asked them many questions and said, “I will do my best to find just the right baby for you.  But remember, you may have to wait a long time.”

After a little while Miss Brown came to visit Mrs. Wink.  She was very nice, but quite particular.  She asked more questions, and went all over their home.  She seemed specially interested in knowing where the baby would sleep and play.  She found that the Winks had a lovely home and lots of room for a baby.

Many more months went by and Mr. and Mrs. Wink kept saying to each other, “I wonder when our baby will be coming.”  Mrs. Wink would call up Miss Brown and say, “We are still waiting for our baby.  Please don’t forget about us.”  Miss Brown would say, “Be patient.  It takes time to find just the right baby.”

Several months later Miss Brown came to visit the Winks again.  Surely this means our baby will be coming soon! 

One day Mrs. Wink got a phone call from Miss Brown.  “I have good news for you!  We have a baby girl for you to see.  Can you come tomorrow?”  Mrs. Wink was so happy and excited.  She called Mr. Wink at the office and told him the news.

The next day Mr. and Mrs. Wink went to see Miss Brown.  First she told them about the baby: “She is six months old with the biggest eyes you’ve ever seen and lots of brown hair,” she said, “now go into the next room and see her.

Mr. & Mrs. Wink both held the baby girl.  “This baby is our chosen baby.  She’s just perfect!”

Miss Brown said, “Well go home and get some baby clothes and some baby food and come back tomorrow and you can take your little girl home.”

That night Mr. and Mrs. Wink went shopping for baby clothes and food.  They were so excited they didn’t sleep all night.   The next day, they went to pick up their baby girl. “What shall we name her,” they said.  Mr. Wink said, “How about Amy?  I think that’s a pretty name.”  Mrs. Wink thought for a while then she said yes, “Amy means beloved.  I think Amy Marie would be a pretty name for our little girl.”

After dinner the Wink’s house was a very busy place.  Everyone came to see little Amy.  All her grandmothers, grandfathers, aunts, uncles, and cousins were there to see her.  And of course they just loved her!

After everyone left, mommy and daddy got Amy ready for bed.  When they put her in her crib they both said “this is the happiest day of our lives; we have a beautiful little girl.  At last we are a family!

The End

My parents read my story to me so often, I suppose, that I always knew I was adopted.  And I was very lucky; it was a good family.   I’ve always been lucky, always been blessed.  I certainly didn’t always realize it or appreciate it, but now I know it.  I know it every day.  It helps a lot to know it.  When I’m grateful I’m happy.

People deal too much with the negative, with what is wrong.
Why not try and see positive things, to just touch those things and make them bloom?

~ Thich Nhat Hanh

‘Manzo knows this!

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all the livelong day

Posted in autism, behavior, singing, Uncategorized, tagged , , , , , , on November 11, 2012| Leave a Comment »

Usually I know how to calm him at first, to get him used to being with me.   Singing softly.  Today I try Guster and The Beatles but he gives me a no to both of those.  I’ve Been Working on the Railroad it is.  We take turns with the lyrics, me singing a line or two, then pointing to him, he picking up tune & rhythm without breaking tempo.

It’s a complicated song as children’s sings go, but he prefers complicated songs with distinct bridges into all-new musical directions, and back again.  Keep it Together by Guster, for example.  I should turn him on to Bohemian Rhapsody or A Day in the Life.

He asks me for hug and so I slide over to him, and he wants kisses on his head, and I wrap my arms around him gladly, taking advantage of this somewhat rare physical closeness I get with my son.  More kisses? he pleads, giggling.  I kiss him all over the top of his sweet little head and then lean back to face him for a kiss on the lips.

SLAP his hand flashes out and catches my upper cheek and eye.  SMACK comes the other hand, fingers now curled to grab and pull at me, though my glasses are off and I’ve tucked my hair under a hood, so contact is minimal.

I caught his wrists after that, and we got him to the apartment okay.

I forgot my camera; this picture is from another week.

When I got home, I did laundry and dishes and raked my whole front lawn, stripping off layers of sweaters and zip-up fleeces until I was wearing just a t-shirt.  I moved in hard sweeping lifts, leaves clinging to the rake, my clothes, my gloves.  The sun and the cool and the wind-less day made for ideal raking conditions.  I felt strong: alive and focused.  I shoved the leaves down inside the bags with one leg, my foot stomping hard, compacting – my nose filled with the almost-decayed smell of fallen leaves.

I’m just a hair shy of the kind of OCD that would have me picking up stray leaves one by one from the lawn.

It felt so good to work fast and hard, to know what to do to complete a task, to literally bag it all up, and to have a different result than when I started.  Anything I can do that brings with it a logical beginning, middle, and end is good.  These blog entries are vital.  Making a difference somewhere, somehow, any way I can.  Even if it’s just clearing a scattered gathering of autumn leaves.  The leaves aren’t going to pretend to go willingly into the bag and then suddenly stage a coup and escape, attacking me with their sharp pointy stems and edges.

Work is important. Tasks are vital.

Otherwise I would go mad.  Mad madder maddest. 

“Keep it together;
Can we keep it together?
We’re singing a new song now…
and everything starts today.”

~ Guster

My friend D send me a coloring book in the mail, and I’m about to go have brunch with two other wonderful friends, after which I will take a walk in the sunshine to the park. Maybe make some nature art with what’s left of the colorful leaves.  Or break out the crayons and play in my new coloring book.  Play UNO with M’s kids.  Play with my dog, pet my cat, send out some cards, maybe a package.  Perhaps I’ll even call someone I haven’t talked to in a while.

Just to pass the time away.

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dear boo

Posted in autism, behavior, doctor, hospital, iritis, language, placement, The Anderson School for Autism, uveitis, tagged , on November 8, 2012| 3 Comments »

Dear Boo,

Mama is so sorry, sweet angel, but it looks like you are going to need another eye surgery, and soon.  See, the one they would normally do requires the patient to avoid touching the eye for two weeks, and we know you can’t do that, and we can’t explain it to you, so we have to try something else, and these laser eye surgeries are the something else.

This might not even be the last surgery.  The surgeries aren’t helping so far, and what we’re trying to do is make sure you can continue to see.

People with autism are usually visual learners, and you seem to be one as well.  Thinking in Pictures by Temple Grandin explains this somewhat, and if you could read it I would give it to you and see if you agree.  I don’t really even know if you can read.  They talk about the sight words you know, but even illiterate people know what the STOP sign says.  I don’t know if it matters that you can read, even.  Sometimes I wish you understood more and sometimes I am grateful for your ignorance and innocence.

Have the eye appointments and surgeries become part of your normal?  I guess they must be, by now.  You tip your head back for the eye drops like an expert and read the eye chart like a brave little man.  You are as patient and tolerant of the neurotypical people around you as you can be.  I have no idea how difficult it is, to be surrounded by people who do not understand you.

I’m so sorry, sweetheart.  Mama and daddy are doing their best to make sure you are not in pain, that you have eyes that are healthy, a strong little body, and a calm, peaceful, happy mind.  I’m sorry you don’t have many of those things and I’m sorry there isn’t anything I can do but trust and pray and hope.  I can research, and listen to my instincts.  Hold you close for as long as you’ll let me.  Breathe you in.

You amaze me, Jonah Russell.  Daddy and I will do the best we can for you, for as long as we live.

Mama promises.

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supersandy & jonah’s circles

Posted in Uncategorized on November 4, 2012| 1 Comment »

We have been blessed in Albany, NY.  Sandy left us pretty much alone.  But oh my God they were right about the enormity (enormity doesn’t mean what I thought it meant) vast extent of the damage.  Too bad the two billion dollars Obama and Romney spent campaigning wasn’t around to help all the people left in the dark and the cold.  Destruction, trees, debris everywhere.  Generators with no gas to run them.  And then they almost held a marathon on top of it all.

Yesterday mom and I drove to see Boo.  We stopped at the Mobil in Rhinebeck and were shocked to see these signs on every gas pump; yellow tape was wrapped around the tanks at other stations.

Rhinebeck, NY

On the way back from our visit we passed convoys of utility trucks driving south.  I imagine they’re reaching out to cities farther and father away for help.

The visit with Boo was a good one — nowadays he walks in precise circles.  This video shows him on a low bridge over a creek running slow with his beloved water.  It looks a little circus trick-y but trust me when I tell you Boo has superpower skills at staying on the safe side; it has always been this way.

He had all this favorite things – bath and lunch, grandma and hugs.

His beloved lip balm, and bleu cheese

He had a particularly joyous time on his swing:

I love when he is this happy.  He asked for “mama push?!” and I pushed as hard as I could.  He swung so high I knew he felt like he was flying.  “Jonah, flying so high!” I shouted to him.   “Flying so high!” he shouted back at me over and over, giggling and shrieking.  The above picture was one of about 45 I took of empty sky and half-a-leg.  Digital cameras rock.

I hope they took pictures of him in the little prisoner costume I bought – they say he laughed and shouted and actually said “trick or treat.”  I wish I could have seen it – but I don’t really fit into the context of his school experiences – as soon as I arrive, he wants to go with me in the car.  Same with his dad, of course.  I wish I had a way to spy on him in the house or in his classrooms.  Two way mirrors, maybe.  I don’t know what he’s like when he’s in his own environment, with his peeps.

We visited the Hudson River by the train tracks and watched the wavy water, choppy and grey.  The wind whipped and we were all chilled.

My mom waited in the warm car – she is frail and getting too old to be climbing stairs to stand in the cold.  At the top of the steps of the walking bridge the train goes under,  I put Jonah inside my outer coat and breathed on his ears.  He wouldn’t wear a hat.  I did get a pretty cool picture of Boo with his daddy:

waiting with daddy for the train. It didn’t come.

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