Archive for March, 2013

Andy and I are talking, making decisions, struggling to do what is best and right for Boo.  I know everything will be okay.

He drove Jonah up this afternoon to visit my mom and me at her house.  Jonah’s got the week off from school, and they’re coming up to grandma’s house for Easter Sunday too, so I get to see Boo twice this week.

When I first arrived, Jonah and Andy were already there.  At one point Jonah opened the fridge, peered inside, and reached for a bottle of soda.  Root beer? he said, placing the bottle on the counter.  It was indeed a bottle of root beer.  Andy asked how Jonah knew it was root beer.  My mom replied that Jonah knew the look of the bottle.

Then I piped up.  “He can read,” I told them.  (Now I know as well as anyone that he only can read some sight words, but I wanted to see which ones he knew).

I picked up a milk carton and, showing it to Jonah, pointed to the word MILK.  “What does this say, Jonah?”  I asked him.

“Jonah,” he replied with indifference.  Enough people have asked me to look at letters and tell them what I see, I almost hear him say.  Not you, too, mama.  Cut that shit out.

It has been a weird and wonderful day. I was treated to lunch by my lovely cousin-sister D.  She is inspiring and is a genuinely good, positive person, which is rare enough to be precious to me.  She listens as well as talks.  This is a skill, requiring awareness.  She’s better at it than I am.  She’s good at it like few other people I know.  Her spirit is bright and ready for a smart, engaging, adventurous future.  Go D!

Also I was able to talk to a lot of interesting people over the phone at work.  When your job is to be on the phone a lot, you may as well find out about people.  You can brighten their day, maybe, or be the person who listens to their story of how they built a business up from scratch 16 years ago.  You can’t just bullshit your way through caring how somebody’s day is going…that’s transparent, unless you’re genuine.  After all, who can’t see through that pitch when it’s thrown at them?

Now I am home, and comfortable with Jack, Almanzo, M, and Seinfeld.  It’s all I need right now.

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Warning:  this post goes all over the place Please keep hands and feet inside the vehicle.

What a wonderful, sweet boy my Boo was yesterday.

Andy had picked him up the night before so when my mom and I arrived, Jonah was already there. Andy told us Jonah asked for both of us about 10,000 times that morning.  When I walked in, Boo immediately sought out the goodies I carried (one bag with natural potato chips and another full of birthday presents from my friend K). After capitulating warmly to hugs and kisses from my mom and me, he tore into the goodies..tune-fish sandwich…bath with new toys….more kiss?

His perch while eating is atop a white garbage container which sits next to Andy’s kitchen counter. It is Jonah’s dry bar  – and the garbage can, his bar stool. He tucks his legs under him, mama-style, and chows down to his content. Good thing Andy is very clean, but then again, no reason to be a germaphobe when your kid takes 5 baths a day.

only my kid

This is so Jonah

Nearly immediately thereafter (and sometimes during) his meal, Jonah decides it is time for bath. On this day, I help (usually Andy does), and we had fun splashing around in the bubbles with his new, courtesy-of-K, colored straws.

Colored straws!

Colored straws!

Here I must pause to reassert I am a lucky parent in several ways; for instance, it’s exceedingly inexpensive to bring him joy in the form of play. He is 11 and other children his age have lots and lots of expensive things. I don’t even know what. A gaming station, for certain. Hell, even I had one of those by age 12 or 13. (Mine was called Telstar Colortron and played pong). Anyway, I get off cheap. My mom used to buy him all kinds of electronic games and learning gadgets but he just didn’t really like anything unless it played music. Now he just bops along like a playah, listening to hip hop in the back of dad’s car.

cool as a cucumber

cool as a cucumber, pimpin’ the Gs

Then we played blowing raspberries (I have been watching All in the Family a lot).  Boo thought this was great – and, as usual, ended this very slobbery game by sucking his thumb.

He’s got a couple of new teeth (molars?) coming in, too, so he decided to use grandma’s hand to try them out:

he thinks grandma's hand is a teether

he thinks grandma’s hand is a teether

Jonah was happy to have grandma along in the backseat, something he has not tolerated lately. Grandma stay here? he usually says, and my mom stays at Andy’s apartment watching Fox News. But this day he was tolerant, even sweet and lovey. I love taking these pictures of Jonah with his adoring grandma.

o smiley boo

o smiley boo

Oh, it was a good day. A day of grace. A gift to all of us.

At that doctor appointment…the one I didn’t want to talk about anymore last post…Jonah was so very very good, I’d said. So good that the retina specialist could see both his Reticert implant and his optic nerve very well. So well that she turned away from Jonah and spoke to me in a low, controlled, serious voice: I’m very concerned. Jonah and J left the room while E and I stayed to talk to the doc.

The pressure in his left eye is at least 30, and she suspects higher. The optic nerve has thinned considerably, drastically more so than when she saw him a few months ago.  With his left eye, he could barely read the giant E on the chart.

little boo is better at the eye doctor than most adults are, including me

little boo is better at the eye doctor than most adults are, including me

From what I could understand, we are out of options but for one: do what Dr. S (the glaucoma doctor) has wanted to do all along – take the Reticert implant out. It isn’t as if Dr. F (the retina doc) has come to agree with him – it’s that she doesn’t know what else to try.  If we opt not to operate to take the damn thing out, his sight will eventually disappear altogether in that eye. If we opt to operate, the Reticert comes out but it might not do any good at all.  It’s a shot, though doc’s confidence is not high.

I keep remembering how much pain he experienced after they put the Reticert in his eye 3 years ago. It was the first time in his life, at age 8, that he verbally expressed pain. Eye hurt? he cried, hanging his head in despair-like desperation, cradling his forehead with one hand, pain pulling the words out of him.

Since the Reticert isn’t supposed to be dispensing meds anymore, it could just be left there, according to Dr. F.  But now she wants to try taking it out. E asked questions. I asked questions. Of course I forgot to ask a lot of questions. I scheduled the operation for May 14th, figuring there was plenty of time to change our minds, to research, to ask other people.  To think.  Absorb.

There is a doctor who comes from Boston to see patients at Dr. F’s office. I want her to get him over here to see Jonah before we do all this. I need a second opinion, a different perspective. It isn’t that I don’t really love and respect Dr. F.  I do think she maybe has difficulty dumbing things down for we lay-folk.  I didn’t understand well, for instance, that the eye pressure would in turn put pressure on the optic nerve, which is why it’s thinning out.

When I left her office with E, I was in a daze. I think E was, too. Poor peanut butter, she said, her loving nature holding all these children’s hearts to her bosom; her sharp mind keeping track of them, protecting them, listening, keeping on top of appointments, trusting her instincts. She and J are amazing. I have said it before and I’ll likely say it again.

When I got to the van, I was almost openly weeping, fearing the worst — total blindness — ready to curse God pre-emptively for a nightmare scenario which hasn’t yet occurred. Keeping it together for a moment, I kissed Boo soundly and turned away. Then E hugged me and J as well, and I got in my car and cried, allowing a fog to descend on everything. I can’t fight the aggression and the blindness and the 6% proposed fucking budget cut to the Office of People with Developmental Disabilities all at once.

And so I called Andy, my dad, my mom. Told M and a few close friends. A few people at work. People with autism are usually visual learners. The irony would be funny if it weren’t so maddening.  I called Dr. F’s office and asked for her e-mail address. I am not an orator and if I speak with her on the phone, I will forget half of what I want to ask her and most of she tells me.  If I can e-mail her, I can take my time to gather my thoughts and formulate my questions.

When my mother arrived yesterday, we hugged one another and I held on to her tighter and longer than usual. She loves Boo more than anything on this planet, I believe, and that is why she can know my feelings perhaps better than anyone except Andy. We only talked about it a little. We both said we would give him an eye if we could, and then we had an “argument” about which of us should hypothetically give him an eye, and she declared it should be her eye – which sees very well, she’ll have me know. Besides, I need my eye for work, she asserted. It was a ridiculous conversation but it kept the focus (pun intended) away from the fear.

And then the beautiful scent-of-spring Rhinebeck cold and a wonderful day of grace.

If you know me at all you will probably be surprised to hear me say this but I would love to take Jonah to see Pope Francis.  How cool if he were even to be blessed by this man who wants us all to be humble, to protect the weak, the environment, the poor.  I love Francis’ humility and his gentle spirit.  I smile when I read about what he says and does.

I would maybe take Jonah to Lourdes, or a faith healer I believe in (is there any such human?)  I am buying him essential oils. I’m becoming more willing to try anything innocuous as long as it is not downright ridiculous. And fewer and fewer things are sounding ridiculous. You can’t understand how desperate you can get until you walk a mile in the moccasins.

This is why I love working with prospective adoptive parents. I understand their emotions, if not their exact situations. I get it. I know what is like to want something so badly, to have all this love and all kinds of questions like when is this going to happen and is this going to happen and my God who can I trust who really cares who has a heart? I understand what it is like to be part of a vulnerable population.  Plus I am adopted and it gives me a special connection to them all.

Divinity is prodding at me. My faith is so weak. A fucking mustard seed. I am the atheist in the foxhole (though I never was an atheist) in the sense that I find it easier to reach out to God when knocked to my knees, even to a God I don’t understand or can wrap my mind around. It makes sense that there would be a Jesus son of God in order for we humans to wrap our minds around it all.  A human you can relate to – even one who tells puzzling stories and heals people left and right. Why do I struggle so with the concept of God and accepting Jesus into my heart?  Is it all the truths I see in other religions?  Can’t I love and pray to Jesus and still believe others will go to heaven too?

Do I have to believe in what I can’t help seeing as a “special club” mentality of I’m going to heaven and you’re not?

I would rather follow Jesus through actions, evangelize through deeds. I would rather listen and act upon the wisdom of Buddha as well. I would rather believe there is a chance for us all to experience an afterlife, a rebirth, something other than nothing.

At any rate now I am praying. And in my old Catholic way. Praying to the Mother, to Mary, to help us, to intercede on our behalf. The Protestants don’t understand why we pray to some saint to intercede when you can just go straight to God, and I’m not sure I’ve got an answer for them, but I know St. Anthony comes through for me when I lose something important, and I feel Mary listening, empathizing as a mother who raised a difficult son of her own. Sometimes when I pray to Jesus it is more like Guster’s song Empire State:

“I’ve been talkin’ to Jesus, but he’s not talkin’ to me…”

It is difficult to “give it to God,” and it is a fine line. Do you throw up your hands? Are you supposed to step completely out of the way?

Please feel free to chime in.  These are not hypothetical questions, and I am seeking…

He conquers who endures. ~Persius

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There is a lot to say, and I’m in one of those slumps where writing is effort and, more than effort — an exercise in telling when it is easier to stay silent.  When it is preferrable to play an online scrabble game instead, or watch another episode of All in The Family.  To bury my face in a familiar book and re-read it for the fifth time.  To sleep.

Today is M’s birthday; tomorrow we’re going to see Lewis Black, a comedian we both love.  And on Monday I went to see the Beatles band Rain at the same venue with my awesome friend K, her husband, and his sister.  Had a wonderful time, and ate, appropriately enough, at the Old English Pub first.

K gave me a gift bag when she picked me up for the show.  I had no idea why, until she explained it was a birthday present for Jonah.  Stunned, I looked inside.  She’d gotten him two cool rubbery sensory toys, a tennis-ball sized bouncy-ball that lights up, a big bottle of bubbles, and some sidewalk chalk.  I was hoping she wouldn’t see as I tried hard to keep it together but tears escaped my eyes anyway.  At least I was quiet about it.  Only a scant few times, since Jonah was three, has anyone outside my family given Boo a birthday present – or even acknowledged or mentioned his birthday.

On his third birthday, the last kids’ party I ever had for him, he was so completely disinterested.  Jonah didn’t care about the party at all.  As the kind parent guests arranged games for the little kids, I was upstairs trying to coax Jonah back to the party when all he wanted to do was sit and stare out his window.  After that I only had family parties, and, a few years later, no parties at all.  At least he had a good one this year at his residence, with presents, pizza, and balloons.

I have learned not to care so much whether or not people remember his birthday.  I get it, after all.  People don’t know what to get for a kid with autism.  Or they hear me say “he doesn’t know his birthday from a hole in the ground” and so they figure I don’t think his birthday matters.  I understand, and don’t expect.  Hell, I forget birthdays all the time.  But K’s gift sure was a wonderful surprise.

I took one of her gifts with me today when I met Jonah (driven and accompanied by J & E from school) at his retina doctor’s office.  E told me Jonah had an aggressive incident at school today and had to be held.  But he was a very, very good boy for the appointment, for all the eyedrops and demands to look here and there, the bright lights, the plastic thing to be held over each eye as we request he read letters and numbers over and over, the machine he must put his chin inside.  All of it.

Jonah was a very good patient today.

Jonah was a very good patient today.

Because he was so good, the doctor got a better look inside his eye then she ever had before.

I’m sorry.  That’s all I can write tonight.

I’ll come back tomorrow, or the next day.

I love you, precious Boo.

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3 1 3 1 3

As horrible as I am at math, I like dates and number puzzles/coincidences.  And  I love that I know others who are like me in this regard.  I even know someone who called her friend on May 6th, 1978 at 12:34 to tell him it was 1 2 3 4 5 6 7 8.

Today is 3/13/13 — and it’s also the 42nd anniversary of the day I was adopted, a baby 6 months old, and brought into the Wink house & family – on Friday the 13th, even.  I wish I could have been a fly on the wall to see it all go down. Every March 13th I call my mom and my dad (neither of whom ever remember the exact date I was adopted) and thank them for not leaving me to the wolves, an orphanage, or what would have surely been an inferior adoptive family.  I was always loved and for that I am grateful.

I wish I could thank whomever fostered me for the first 6 months of my life, only to let me go.  Was it hard to let a baby go?  Was it hard for my birth mother?  How could it not have been?

Was it hard for my parents to really love me right away, or did they have to grow to love me…kind of get to know me?   They changed my name to Amy, which means beloved.  For 6 months I had a first name only.  Like Madonna, or Adele.  I was that cool.  Tina, I think they called me.   But I’m glad I’m Amy because I don’t feel like a Tina at all.

Jonah has had a calm couple of days, and I hope there is a similarly good report tonight.  Today was the first day I really smelled spring in the air, though it was only 45-50 degrees, and something awakened in my blood.  Maybe Boo feels it too, and it makes him happier.  He does love to be outside.

Here are some random pictures to share:

Boo has very long, pretty eyelashes

Boo has very long, pretty eyelashes

sweet baby jack

sweet baby jack

Jonah, holding Fearless Fred & telling me "three" with his fingers

Jonah, holding Fearless Fred & telling me “3” with his fingers

A bad cell phone picture of baby Jonah

A bad cell phone picture of baby Jonah

"Silly me!"

a rock cairn I made in Hawai'i

Rock cairn I made in Hawai’i

Happy 31313…

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Jonah turned 11 on March 7th.

This weekend I couldn’t see him; I was on a business trip to an adoption conference in NYC, so Andy brought Jonah up Friday evening (the day after his birthday) and I met them at oft-requested grandma’s house.

Evidently Boo was a good boy the night before at the residence, where they threw a little party with pizza and cake.   I guess as soon as Jonah understood it was his birthday party, he began incessantly requesting cake.  All through the party.  Cake?  cake?  cake?   And to be even more specific, what he really meant was frosting?  frosting?  frosting?

Perhaps for his birthday next year I will give him a whole tub of frosting right at the beginning of the party.

Of course I am being facetious and am in fact trying harder to pay careful attention to what he is eating and drinking.  Last post was all about how I want an answer to his aggression, and I figure the first place to look is nutrition & what is going into his body.    The school has a nutritionist and I may request the guidelines or whatever to pay more careful attention to Jonah’s diet.  In all probability it is me who gives him more “junk” food than anyone.  He actually eats his vegetables (and certainly gets no black soda) at school, that’s for sure.  Andy always has salad, vegetables, and healthy things for Jonah to eat.  I’ve ordered a continuous prescription of chewable Omega-3s; I think he’s been on them for a year or so now.

Most of the limited medical research I ‘ve done so far emphasizes the comorbidity of autism (particularly that which is accompanied by aggression) with stomach problems and/or sleeping difficulties.  Jonah goes to sleep early and sleeps well through the night, and he doesn’t have stomach difficulty.  Unless you count that the food gets down there unmasticated, as he is wont to shove great chunks of food into his mouth and needs constant reminders to take small bites.  Maybe that does mean something.  One of the problems with this kind of research is that I find either ‘autism 101’ filler pieces about how behavioral problems are addressed through ABA, sensory toys, social stories, etc. or I find articles and dissertations out of advanced medical journals and can’t even comprehend half of what I’m reading.

So I will dig a little more every day.

On Friday Jonah enjoyed his mini-party at grandma’s house.  She’d bought him two helium Happy Birthday balloons, which of course he loved, and as a treat we got him Burger King.  Of course, this was topped off by two baths and a very auspicious car ride to see train, which arrived at the crossing just as we did.  Jonah rolled down his window and stared at the passing railcars.  It was a very good visit.  Boo gave lots of hugs and kisses, and requested music? if we weren’t playing it loud enough.

Boo tries to share a french fry with his balloon

Boo tries to share a french fry with his birthday balloon

“How old are you now, Boo?”

No answer.

“How old is Jonah now?

I’mtenyearold he replies in a word-slur only someone used to his enunciation can understand.

“Guess what, Boo?  You’re eleven years old now!”

Evvenyearold, he tells me.

“That’s right, Boo, you’re eleven now.  How old is Jonah now?”

I’mtenyearold, he answers, as if to say I just told you.

Gotta love my boy.

a birthday bath - one of two

a birthday bath – one of two

That night Andy kept Jonah overnight for the first time since we admitted Boo to Anderson, a year and a half ago.  And Jonah was good, and it went well, though even when he is good he is an exhausting enigma.

And here I am outside Madison Square Garden,
playing around while waiting for my train
because, underground, Penn Station feels
dizzy with people, everywhere people, blurry-quick,
moving confidently and frenetically in all directions…
and I don’t like it to be down there.

Carmelo Anthony and me

‘Carmelo Anthony’ and me

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“Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.”
~ Albert Einstein

Okay so I promise to not quote any more Nietzsche in rash moments of angst.

I’ve just come to the conclusion that if I want to get to the bottom of my son’s aggressions I’m going to have to do it myself.  Should that have been exceedingly obvious to me a long time ago?  Here I am waiting for the professionals to put all the pieces together.

For years, the schools have tried to chart his behaviors, to associate actions with causes, to figure out why he acts out and when – sometimes, even, he aggresses right after he has just been given a reinforcer (reward) or is in the midst of a preferred activity.  And he’s gotten worse.  And he’s getting older – he’ll be 11 on Thursday.  Now he’s figured out that he has an arsenal of weaponry at hand 24/7: a built-in play-doh factory of crap to sling and smear.  All of this everything that makes no sense HAS to make sense to somebody.  I just have to find this person, these people, the neurologist somewhere who will discover a medical, fix-able reason for all of it.  Or do I?

There has to be a reason. Or does there?  I know autism itself doesn’t really make a lot of sense, but there is usually consistency within its world.  Or is there?  I’m questioning everything I think I know.   I need to figure out where to start, to really start helping my son.  If I can help.

Always I secretly judged the autism parents who flew their kids to doctors all over the country, searching for an answer.  I assumed they wanted to “fix” their child or “cure” them of autism.  Maybe they are just like me.

When Jonah was at a day school for kids with autism, I secretly judged the parents who “shipped their kids off” to residential facilities because they “didn’t feel like” taking care of the child anymore.  Now Jonah is at a residential facility.  And of course before I had a child, I had a million notions of parenting that were better than yours. 

God does hath a sense of humor.

Now I have to do something or go crazy with the merry go round of hope and despair.  I want to help my son.

This past Saturday, Jonah was pretty good:  he only slapped me in the face once with a soapy backhand and, minutes later, got out of the tub and ran dripping to grab at my mother, who was sitting in the kitchen.  No real harm done in either case, and neither incident lasted very long.  Of course, we couldn’t figure out a reason for any of it.  We rarely can.

Here are some pictures from Saturday.  And a video.  I welcome all comments.  Suggestions.  Judgement.  I’m evidently working off some karma.

Jonah and his birthday present Scare-Me-Not, Fearless Fred

Jonah and an early birthday present Scare-Me-Not, Fearless Fred.  Boo will be 11 on March 7th.

I love the top of his hair in this picture!

I love the top of his hair in this picture!

Jonah’s wisdom at the end:  More brownie?

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Hope in reality is the worst of all evils because it prolongs the torments of man.   

~ Friedrich Nietzsche

Too much too much.  Sliding down the slope, my boy a foot ahead of me and I can’t catch him.  No one can.  My feet were in the sand in Hawai’i and now my head is in the sand here.  But I can still hear what they say and I can still feel the hope slipping away again.  Hope does prolong the torment.

But what else is there?

Tonight I will try to tell more story with less cryptic rambling.

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