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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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these frankendays

Posted in autism, singing, singing, Uncategorized, tagged , on October 28, 2012| Leave a Comment »

“Can we miss
the storm that sucked the
whole
world
in?”  ~ Guster

So here comes the Frankenstorm, and it’s become a mini-series on television, just as every similar event becomes a Truman-Show-esque production of graphics and sound — loud bass drums pronouncing doom. Bum bum BUM!  Frankenstorm 2012.  We shall see.  I went to the store, yes, and got extra stuff.  Better safe than sorry and all that.

L and M brought Jonah up from Anderson on Friday for his retina doctor appointment.  We had the 9am appointment and still had to wait an hour.  It’s hard enough for your average kid to wait an hour, let alone a Jonah-kid.  From now on we’re just going to have to get the first appointment of the day.

I gave him PEZ, green tea,  and a stress-ball to keep him occupied.

His eye looked good, said the doc.  The pressure’s gone down and his right eye looks normal again.  And he was a very brave boy.  He even waited pretty patiently in a special large room they put us in.  The room was filled with expensive looking eye-equipment and I’m thinking are they insane?  But there were three of us there to keep him busy.  I even got him to sing “I’ve Been Working on the Railroad” and “Keep it Together” to calm him.  More often than not Jonah will hush me when I start to sing, but this time he was into it.  I love when we sing together –I will sing a line or two and then point to him, and he’ll pick it up in perfect rhythm and tune, and then I’ll take over, then we’ll sing together, etc.   It’s pretty cool.

Yesterday our visit was good – Rhinebeck was having one of its ubiquitous, cool festivals – this one for Halloween, and the streets were lined with costumed adults, kids, and dogs going business to business to get treats.  If you wonder why we didn’t take Jonah, you haven’t been reading this blog for long.  Besides, the kids at Jonah’s school have their own Halloween trick or treating thing. (Going for tongue-in-cheek, I bought Jonah a prisoner costume).

During the visit we stuck to the routine – lunch, bath, jumping on the bed, rapid-fire requests for various items of food and drink.  He got his trip to the grocery store, and was a good boy amidst the Frankenshoppers.

He was particularly lovey, especially with grandma…

And all in all it was a beautiful day with Boo.  I cried on the way down, though, idiotically and forcibly bringing forth memories of horrible times.  I have one particular memory, after Jonah was diagnosed as special needs but before the autism diagnosis…

I’d signed him up for a music-and-movement class for kids about his age (18 months or so).

The instructor has the parents all sit in a circle with our kids on our laps.  Strike one.  Jonah wants to wander.  Finally I get him semi-settled near my lap and the instructor tells all the kids to reach into the basket in the middle of the circle and take two maracas. 

Strike two.  Jonah has no idea what she’s just said or is ignoring her completely.  So, tears behind my eyes now with confusion and embarrassment, I quickly grab two maracas and hand one to Jonah.  Next we’re instructed to shake our maracas along to a song she’s going to play on the guitar.

Strike three.  Jonah breaks away from me and runs to one edge of the far side of the room, where the wall-length radiator begins.  First he gets a good, quick visual on the scene and then he places his maraca on the bars of the radiator and runs up and down the room – Bat-a-bat-a-bat-a-bat-a-bat-a-bat-a-bat.  You get the idea.  By the time it was over I was practically sobbing. Oh my God what is the matter with my boy?  I’d never seen him in the context of a bunch of other kids his age, all doing the same thing — he being the only one who couldn’t, or wouldn’t.

I need to flush that memory down the garbage chute.

I was fine by the time we got home, and psyched, too, because friend H and I were going to see the Classical Mystery Tour which, to my understanding, was the Albany Symphony Orchestra playing the songs of the Beatles.  It was a birthday present from my dad, who knows I’ve loved the Beatles since I was 13 or 14. (I’d turn down the volume on my Atari 2600 Pitfall game and listen to the Beatles’ 20 Greatest Hits instead).  We had good seats, about half way back.

Last night was almost a full moon, and H and I saw evidence everywhere we looked.  What a strange, amazing night.  I ran into my dentist, of all people, who thought he recognized me as a dental-supplies vendor.  I said, “no, man, you’re my dentist.”  (I don’t think I actually said man).

Then, this guy who tried to direct us to the bathroom had such a heavy accent that we had no idea what he said.  We could only thank him and run far away to laugh until we cried.  We had great seats and noticed a mostly-older audience, though there were plenty of Gen Xers and younger, even.  H went for a drink and even brought me back a t-shirt.

I didn’t realize there was a Beatles look-and-sound alike band playing with the orchestra.  Even after I saw the main instruments and grand piano on the stage, I didn’t realize what we were in for…and then, still before the concert started, things got truly weird.  A man sat down next to me.  He was alone, and I quickly realized he was on the high end of the autism spectrum.  “Don’t you love the Beatles?” he asked happily, and I enthusiastically answered “Yes!”  He was practically bouncing in his seat.

He told me his name, J, and his exact birth date:  November 30th, 1970.  Throughout the concert he would lean in toward me and sing in this beautiful voice.  I sang harmony to his melody and melody to his harmony. When I complimented him on his voice, he told me he was a choir member of St. T’s in a nearby town.  I tried not to stare at him.  It was difficult for me not to love him.

I was amazed and not amazed.  How can I explain?  This is the third concert I’ve been to in two years or so where I was seated next to a disabled person – all were adults, and two of them had autism.  There is no way this is a coincidence.  I have been struggling with finding faith in the midst of all this, and I feel these incidents are nudges from divinity.  I’m here.  I won’t leave you.  Trust.  Don’t worry.  I love you.

All these things and more I hear.  Oh, and I want to share this video, partially narrated by my favorite Father Noone, about the kids in Haiti I’m trying to help.  I realize there is a Frankenstorm coming and perhaps some people will need much more, but even one or two or five dollars will help a cause I believe in strongly.  You can support both.  The tiniest amount, when we all chip in, becomes a miracle.

Who knows why I get all up in arms about one thing and not another?  I think I am behind this because I love Father Noone, and I met Pierre, and now I see, in a world where it evidently requires a billion dollars to run an election campaign, that it is possible to raise this comparatively paltry amount of money so that these kids can go to high school and manage their own country effectively.  Education is everything.

“These Frankendays are yours and mine, Fran-ken-days.”

Be careful, everyone.

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haiti & the harvest festival

Posted in Anderson School, autism, doctor, grandma, iritis, language, placement, Uncategorized, tagged , on October 21, 2012| 1 Comment »

Yesterday was Harvest Fest at Jonah’s school.

I did something very similar to my dorm room door, junior in college – only we glued real leaves to the wall…

We visited his classroom and spoke to his teacher, who gave us a folder full of Jonah’s work sheets and art, then told us Jonah has good days and bad days, which is teacher-euphemism-talk for he’s really difficult, randomly, and it’s frustrating. He is one of the most verbal kids in the class, so they don’t use PECS with him anymore.  I guess Jonah has a vocabulary of sight words and he really loves occupational therapy.  His teacher is young, pretty, and interested, with a sharp mind for noticing important things and a kind heart to care about the children.

There are teacher’s aides as well in the class, and occupational/behavioral therapists, and art/music teachers, and they all work together to educate these mysterious children like my Boo.  Amazing.

What a beautiful day, too, sunny and warm and autumn-pretty – after visiting the school, we walked to Jonah’s house and then to the recreation center, where they had bouncy bounces set up, grills cooking up yummy food, and activities for the kids.  We waded through the groups of kids and teachers until we found Boo.

They’d actually managed to get him to wear this headband with two curled black pipe cleaners and red leaves on the end of each one.  He used to hate stuff on his head — hats, hoods, Halloween costume accessories.  When or why or how this changed, I have no idea.  In some ways Jonah is very malleable; he morphs almost magically into a different kid, one little corner of his brain making seemingly arbitrary decisions in matters of head coverings and food preferences, who he requests to be with him in the backseat, what he wants to drink:  appoo ci-der?  milk?  cranbewwy soda?

When we caught sight of him, he was standing next to one of the picnic tables and seemed to be doing okay, but as soon as he saw us, he wanted out.  And so he got a bear hug from Pa (my dad) and then my mom and Andy and I brought him to Andy’s apartment.

Jonah’s newly renovated house – Jonah’s window overlooks the playground behind it, and the pool behind that.

Jonah leads the way to the car.

Jonah being silly as his dad helps him with the car harness

When we’d completed our usual tour of bath, lunch, and car ride, Jonah requested the “grow-shee-store?” At the self-checkout lane Jonah started screaming in what I can only describe as “obnoxious joy.”  I told Andy to go ahead and take him out while I weathered the stares (usually Andy’s privilege) and paid for the food.

And after we’d been back at the apartment for a while, my mom and I left.  My car drove us home okay, but when I tried to run to the grocery store later in the day, the steering wheel was shaking and the car pulled heavily to the right.  I guess tomorrow I’ll have to drive it (gingerly) to the shop by my work and leave them a note with the keys.  Sigh.

I was just thinking:  It has been a long time since I cried over leaving Jonah behind each week.  I don’t know what that means, if it means anything at all.

I will also tell you this little not-about-Jonah story:

With my favorite pastor ever (the recently retired Father Noone) I’m joining a committee to support a school being built in Fontaine, Haiti.  Father went to Haiti and helped cut the ribbon on the opening of the first three grades.  The money needed to build the school (and, before that, a well) was in large part funded by special collections at the church from which Father Noone retired.  And now, that same church has explained to Father that, due to financial challenges, they will be unable to continue to support the Haiti project except for a second collection twice a year (or something equally lame).

Disappointment at this decision aside, I am helping Father Noone raise the money needed to keep the 105 students there for another year.  It’s just $300 per child.  That’s $25 a month for a year.  Or, as the commercials like say, “for just pennies a day” — but it really is true.  Hell, you could spend $300 just buying school clothes and supplies here in the states.

These are children who would otherwise have to walk 4 miles a day round-trip to school in another town – in a country whose villages have no electricity nearly three years after the 2010 earthquake.  Unimaginable.  Try to picture that happening here, how enraged we would all be.  Hell, I remember an ice storm some years ago and being frustrated at its four day interruption of my normalcy.

Anyway, if you can help (in any amount), please click on the link and donate from there.  If not, I’ll never know.  I wouldn’t judge even if I did.  Every cause wants money.  I just want to help Father and this school he believes in as much as I can.  This quote by a wonderful author (who had to write under a male pen name to get published) describes Father Noone perfectly —

“In spite of his mildness and timidity in reproving, every one about him knew that on the exceptional occasions when he chose, he was absolute. He never, indeed, chose to be absolute except on someone else’s behalf.”
― George Eliot, Middlemarch: A Study of Provincial Life

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the forgetting

Posted in autism, behavior, grandma on October 16, 2012| 4 Comments »

Our visit with Jonah on Saturday was fine, for the most part.

Jonah, trying to blow up both red balloon and orange balloon

getting ready for bath

I took a little video too and caught a brief moment of a ninja-like, out-of-nowhere attempted aggression at Andy.  It happened in the car.  Jonah was sitting behind me and Andy was driving. In this video you can get a tiny taste of how lightning fast Jonah can move.

This time, thank God, he quickly settled back into Dr. Jonah from Mr. Hyde – my mom distracted him.  And Andy is responsible for the music in the background.  My mom was afraid Jonah would choke on a balloon.  Jonah demanded cranberry soda.  I just filmed.

Sometimes things start to feel surreal.

The thing that might be strangest of all is the forgetting.  The forgetting what it was like to parent a child.  I’m beginning to only fuzzily remember what it was like to get him dressed and ready, to put him on the bus, to tuck him in at night.  To change him and play with him.  Then, further back:  watching him play so joyfully in the ocean.  And still further back:  nursing him, our eyes meeting, loving mama and her baby boy.

There is a lot of freedom now.  There is deliverance.  It feels really good.  But I am also in a purgatory of sorts.  I am Jonah’s mother and will always be his mother.  But I am not his caregiver and I can’t protect him, and I think I will always hate that part.  People usually have other children at home.  Jonah’s my only boo.  Well, I certainly was never going to be the great earth mother, knitting blankets and baking pies – spouting wisdom, president of the PT fucking A.

You gotta roll with the punches.  And we really are all in the same leaky boat.

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kiss eye

Posted in autism, doctor, iritis, Uncategorized, uveitis on October 9, 2012| 4 Comments »

Thank you all for lifting me up with love and light and prayer.  I know I am biased but my boo really is so brave and amazing.  Jonah was great on Monday for his eye operation, even though we all had to be there at 6am, and I was very proud of him (after I stopped being nervous – when it was all over).

the way he sits and holds his body and arms/hands is very much like his mama

I gowned up to walk him in the OR and be with him while they gave him his mask for the anaesthesia.  The nurse was kind and treated me with kid gloves.  “You may see his eyes roll up in his head,” she gently warned.  I remembered that horrible first operation, how I sobbed and begged the people in the room to take care of my boy.

“This is his third eye operation,” I answered, “so I’m kind of used to it now – but thank you.”  How kind they were.  As soon as his eyes closed and he relaxed back onto the operating table, I kissed Boo and left the room.

While I was sitting with my mom in the waiting room, the reception desk phone rang and they called my name.  My mother and I looked at each other, trading fearful glances.  It hasn’t been long enough.  And then to make it worse, they tell me it’s Dr. S (the surgeon) on the phone.  But only to tell me the surgery is over, that Jonah did fine, that he is in recovery.

Soon afterward we were at his side as he groggily asked for ice cream.  They did let him have red popsicles, and he ate three.  His left eye was weirdly wide-opened and dilated, but not oozy or yucky and he kept blinking it shut hard.  It was as if it wasn’t quite painful or itchy (and of course I don’t know) but rather sensory-deprived.  He wanted pressure on the eye.  “Kiss eye,” he begged me over and over.  I told him to close his eye and I kissed the eyelid.  He smiled and giggled; grabbed my hand to pull me closer. “Kiss eye,” he said again.  I must have kissed his eye a dozen times.

My brave, wonderful boy.  They drove him up again today for a follow-up visit with the doc/surgeon, and this time my dad came with us.  Jonah was amazing again.  He read the eye chart and held the little black instrument to each eye (and yes, he tried to cheat again), he put his little chin into that scary eye machine, he tipped his head back for the eye drops, and he was calm through examinations with scary looking instruments.  To be honest, he is better at the eye doctor than I am.  I hate having drops put in my eye, and when they don’t explain to me what’s happening and what exactly they are going to do to me, I get physically sick.

Before both visits Jonah paced small circles and asked in the van? (meaning can we please get the hell out of here now?)  Today I used new Strawberry Fields tic-tacs and pomegranate seltzer (which he dubbed, of course, white soda) to treat him.

He immediately identified the tic tacs as candy and started asking for them as such.  I’d give him one or two between procedures, instructing him to chew.  He was so good and so happy.  I know this sounds weird but it really made my day.

The day started off shitty, too.  It is the 10th anniversary of my best friend Gina’s suicide.  Now she has been gone longer than I knew her.  This morning was awful, with me walking around weeping and poisoned by putting on grief, dressing myself in it as a burden in martyrdom…but M, Andy, & my friends/readers loved that nonsense out of me.  Thank you.  And Gina, watching over my boo, guardian angel style.  Thank you, Brother Peen.  I love you.

It turned out to be kind of an amazing day.

Jonah and “Pa” (my father)

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what she said

Posted in Anderson School, autism, behavior, Uncategorized on October 4, 2012| 6 Comments »

I should call Jonah’s behavioral therapist and go over some plan for what to do about all his aggression lately…

I thought it just yesterday at work when glancing at a picture of my smiling two-year-old boo made me remember what it was like when I had a child who had only autism, hold the violence.

But she called me first.  When my cell phone rang last night around 7pm I knew it was Jonah’s school from the area code.  I heard her voice, softly accented and smart, kind and comforting.  I like her very much; I think she truly cares about the kids and works hard.

She told me she wanted to talk about Jonah’s behaviors and I said yes, thank you but very little else as I broke down suddenly and quickly, and silently thank God, everything in me held tight, squatting crouched at the top of the basement steps.  Tears came in quiet, steady little streams down my face as she spoke, making two distinct darkened wet spots on the red carpeted landing…I stared at them, teeth clenched…holding my breath…my silence broken only by the occasional word of affirmation.  Right.  That sounds good.  Thank you.

“Jonah’s been here more than a year now and he is so much better at working with others and in groups than when he first came,” she started.  I don’t have to be a psych major to know this tactic:  present a positive first, then a negative, then another positive.  It’s a good plan but she knows I know what’s coming.

I’m unsure what snapped something inside me and made me cry that way, but something did, and when she talked about how Jonah’s behaviors have continued, how some have gotten worse or more intense, I wanted to scream.  They think perhaps it is the medicine affecting him a bit, and she thinks also he is so smart, my Boo, that he seeks attention to the point of aggressing or poop-smearing or whatever just to see what happens – to watch who does what – to be the center of attention.

I think she’s right.  He’s an only child and was very used to being so.  Maybe he’s mad about sharing so much with so many other kids.  Not material things, not tangible things, maybe…he wants games and fun and snuggles and chases and it’s all got to be about him…maybe.

We don’t know they’re not sure …she is going to try a positive reinforcer squeeze toy or something he can hold tight and squish – a stress ball or stuffed animal or something – a comfort object, as they would say in The Giver.  I wonder too if a weighted vest would help.  Sometimes I feel like I want to crawl out of my skin, abandon body altogether, this cage of bones, and fly away.  Maybe Jonah feels it too (although he probably wants to grow gills and swim away).

I want to help him.  I thought he would get better there.  I didn’t realize the placement was necessary but also, quite likely, permanent.  The only way I could do it at the time was to leave that part out and not think about whether or not it was a place where he can eventually come back home.  All I  knew was I was losing him and I needed quite desperately to lose him and it all felt like crawling through fire.

It feels like crawling through fire to consider him being away from me like this indefinitely, aggressing, battling blindness and arthritis and whatever the fuck else we don’t even know about.

It’s all so different from anything I imagined, this path.  God hold me steady on it.

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salad bar bath

Posted in autism, doctor, grandma, hospital, Uncategorized, tagged , , , , , on September 23, 2012| 3 Comments »

Jonah’s a big fan of the salad bar bath.

warm water, crisp salad, & lemonade

We had a great visit with Jonah on Saturday, and I went back to eating solid food.  There isn’t much else to report, or rather I’m feeling numb and surreal today.  I’ve been afraid to do much of anything, lest the devil-ache come back.

Is it safe?

Here, as always, are photos to compensate for my word-loss.

swimming’s “closed” – so we waited for the train.     (it came)

Jonah means business when it’s time                           to go to the grocery store!

Ready to roll…

I will see Boo on Tuesday; after my early a.m. neurologist appointment, I should be right on time to meet him for his glaucoma specialist.  I think my mom wants to come to this one.  (His, not mine, of course).

I’m bone tired.   Truly.  Tired in my bones, all tight and hurt-y.

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for jonah i will

Posted in Anderson School, autism, The Anderson School for Autism, tagged , , , , , on August 29, 2012| 4 Comments »

Unless you just stumbled upon this blog, you know my son Jonah lives and goes to school at the Anderson Center for Autism.  We could no longer keep him home because of his violently aggressive behaviors.  Jonah has come a long way in the year he’s been at Anderson!  So many parents like us depend on this school for their child’s fundamental education.  Anderson is holding a Fundraising Gala on October 6th.  The idea is to raise money for the school.

I am not one to ask for money often, but today I am.  For Jonah I will.

I am so grateful to the Anderson Center…

If you can give any amount, I will appreciate it very, very much. (Choose gala donation when you get to the donate page). Your information will be kept private and your donation will be processed on a secure server, though you will be acknowledged in the Gala Program and of course can use your donation as a charitable contribution on your taxes.

And if there happen to be (or if you know) any owners of restaurants, Bed and Breakfasts, stores, hot air balloons, art centers, museums, bookstores, grocery stores, amusement parks, gyms, hotels, airlines, spas, hair salons, gas stations, toy stores, resort properties, etc. reading this– or if you have a superfluous surplus of iPads, those things/gift certificates/gift cards would be amazing to have for the silent auction.

May your kindnesses come back to you a thousandfold!

I’m starting my blog vacation now…be back in town on the tenth.  I am so excited I am almost shaking just to think about crossing the threshold of Laura Ingalls Wilder’s home, kept just as she left it when she died three days after her 90th birthday, on February 10th, 1957.

(Yes, I know what a geek I am).

Some Jonah pictures and maybe a video until I return:

Isn’t this a great picture of Jonah and Grandma?

A video of Jonah being on-purpose bad and somewhat gross and us not doing much about it.  We choose our battles.

solving complex algebraic equations

disappearing into a dive

Bye, people who use vacation time to go to beaches on oceans and lakes instead of the center-of-the-USA Missouri Ozarks home of a dead children’s book author!  You’re missing out.

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