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Jonah calls my father “Pa.”  My dad called his grandfather pa, so it’s a tradition passed on.

For Father’s Day, my dad and I went to 9am Mass at the church I used to work for, then out to breakfast and to place silk flowers on his dad’s, his grandfather’s, my grandfather’s, and some other family member’s graves.  My dad wants to tell me their stories, share the history of the Wink family.  I’d like to compile it all into a book with pictures and anecdotes and all the tales he’d love to tell – if only to have it all in writing, to pass down to the younger generations.

I know it freaks him out to see his name and birth date next to his mother’s, but he said he didn’t want her to be alone, and his dad is buried in a different place:

I put small red flowers on my other grandfather’s grave, because they reminded me of how I always called him “poppy:”

I’m not a big ‘cemetery frequenter’ but they are good for reminding me to remember, to keep people alive in my memory.

The next day my dad e-mailed me to tell me what a good Father’s Day he’d had, and how much it meant to him.  It meant a lot to me, too – but my day wasn’t over yet.  M did not get to have his children with him for Father’s Day, so he helped me watch Jonah to give Andy a few hours’ break.  We mostly drove him around.  He was pretty good for us, we saw a train or two, let him direct our path – and request different music:  clapping song?  he asks, meaning Cake’s album, Comfort Eagle, 

  • although he’ll listen to the whole CD, what he really means by clapping song is song #2, a song called Meanwhile Rick James which, without printing up the lyrics, appears to be a song about chicks doing lines of coke in the bathroom at a party while Rick James “takes her nude, and there’s nothing I can do.”   It’s not Sesame Street we’re jamming out to, but all Jonah knows is it has lots of these clapping sounds throughout, and he loves that.

Then we go to see red barn in Guilderland, go up up up to Berne, all around Thatcher Park and Warner Lake, and finally go home, back to daddy and take bath.

It has been another difficult few days since then, mentally, for me.  The fact that in less than a week I will know if and when he will be accepted into the Anderson Center for Autism, the fact that if they can take him it will likely be very soon, and the question marks of how the direct care staff, at any facility, will treat him.  I fully intend to somehow augment their undoubtedly meager salaries, because they do the really hard stuff – they get kicked, beat, hit, scratched, puked on.  They clean shit off the walls.  There isn’t much of a break from it.  I am so grateful for dedicated people who work in this capacity with these disabled individuals.  If I were rich I would donate a few million dollars and demand that it be allocated to staff salaries.

I lost it so ridiculously this morning about the impending surrender of our son, and a whole lot more I don’t want to write about – intense anger directed at me by more than one person, a surreal feeling of floating above this whole situation, the terror of the very real possibility of my inability to come out the other side…that it was very hard to “keep it together” at work.

I bounce back every time, though.  Seeing the graves reminded me to embrace the good, even if I have to draw it from my past for a while – my sweet, cuddle-boo…

…for soon enough it will all be gone — for all of us — all the fear, the worry, the joy and pain, all of it gone.

Unlike Trix, death is for everyone!

– – –

“Live in the now!’  ~Garth, Wayne’s World

speech leaper

I have Father’s Day things to say but they’re too fresh in my mind and the writer in me can’t string them all together just yet.  So I’ll go back to yesterday, when D and I took Jonah to the falls and he got to walk around in the water for the first time this year.  He’d said “bye bye D” a few times on the ride there, but we’d thought nothing of it because he’s always saying bye-bye to the passenger…bye-bye daddybye-bye-M

But on the ride home he said, and I quote:  “bye-bye mamaand D, too!”

It was the first time I’d ever heard him use the word “too” like that – or complete a sentence with any kind of qualifier.  D and I looked at each other in shock, laughing and exclaiming over this new speech-leap.  It was pretty cool.  Joy prevailed!

All this over your 9 year old boy speaking something that’s not just a piece of a phrase.  He used the word “too” in a sentence.  He’s learning, my precious little boo — slowly, and in spite of whatever it is that’s making him violent, but he’s learning, damnit.

You never dream this could ever be your life, and then it is, and then you can’t dream it not being your life.

You don’t know what to dream.  Every day is a circle of hope and exhaustion, anxiety and happy surprises…laughter and sudden lapses back to despair.  There is only now, to celebrate or suffer.

Yesterday D and I celebrated together, and Jonah chimed in grinning ear-to-ear from the back seat: Is so funny!  is so funny!

Yes, my boo, it sure is.

Right now, anyway.

Today’s the day the Anderson Center for Autism is coming to Wildwood to evaluate and observe Jonah.  In a few days or so we should know (a) whether they’ll take him and (b) when they’ll take him.  Then, maybe, we’ll have three residential schools from which to choose. 

Today is also “fun day” at Wildwood, but Andy has to pick him up as soon as the Anderson people leave because Jonah’s not allowed to participate in the fun day activites; he’s too violent.

While I understand their decision, it upsets me that my little boo can’t enjoy whatever the other kids get to participate in…plus it makes Andy’s unpredictable day with Jonah that much longer.  The irony is that Jonah had a very good day yesterday at school, with barely an aggression to speak of.

No fun day for you!

The blessing is that Jonah likely won’t care.  A car ride, a bath, grandma, and some peanut butter roll will, perhaps, suit him just fine.  I hope.

But it makes me sad all the same.

further to fly

“Sometimes I’ll be walking down the street and I’ll be thinking:
Am I crazy, or is this some morbid little lie?
Further to fly…

A recent loss of memory; a shadow in the family…
The baby waves bye-bye

I’m trying
I’m flying

There may come a time when I will lose you; lose you as I lose my sight
Days falling backward into velvet night

The open palm of desire
The Rose of Jericho
Soil as soft as summer
The strength to let you go…”

~ Paul Simon, Further to Fly

– – –

I am getting sick.  I sound like Peter Brady with his changing voice.

It’s a good day to post some pictures, before M & I go take Jonah Russ for a while.

On a business trip to Long Island this past Wednesday and Thursday:

Long Island is pretty, and I liked the people I met there…but it was also very hot…

And it is always good to return home.  Today I hope Jonah is a happy boy.  Whatever happens, I know we all have further to fly.  Like Paul Simon says:  I’m trying; I’m flying…

So it’s Thursday June 9th and I’m on a next-day deadline to submit my monthly column in the Capital District Parent Pages (though I’ve had a whole month to write it).

I’m sitting there thinking how strange it is that I write a column about a boy with autism who has become so violent we are planning to take him to live in a residential facility, and how the column is smack dab in the middle of a magazine featuring witty anecdotal tales of family life, articles about events, pages filled with fun places to take the kids, seasonal recipes, ideas for birthdays, and other parenting goings-on.  Sometimes I wonder why they even let me write the column.  I’m the bummer of the issue.  Hands-down.

And I’m thinking I don’t want to be the bummer of the issue this time (for the July issue).  So I sit there, and I sit there, but I don’t know what to write.

I haven’t even written here for a week.  How many times, after all, can you say the same thing with only the slightest of variations before you start to sound like a broken record?

It hits me that I could look backward, and so I write about times when he was a baby.

The words come quickly – it doesn’t take me long to finish.  They’re easier words because they are about the short span of time in which I had the same parenting experience everyone else had, more or less.

It’s not that Jonah has autism.   It would be fine, really, if only he didn’t get so enraged so quickly – become so unimaginably angry, so inexplicably aggressive.  Sometimes I feel as if I have done nothing for 41 years except bring a child into the world who is hell-bent on hurting others.  I almost can’t stand it.  I don’t want to stand it.  I want to stamp my feet like a small child and scream.

When I lean in to kiss him, more often then not I get scratched or grabbed by his whole hand on my face.

Einstein supposedly said that one definition of insanity is doing the same thing over and over and expecting different results.   Some think he himself had some form of autism, but whatever the case, I still will lean in for the kiss.  It’s not that I’m expecting a different result.  It’s that I need a different result – and if I can get his sweet little kiss one time out of five, it is worth the other times.  I just want to be his mommy.

I don’t know my son anymore at all.  I don’t know why he hurts me (or Andy, or his teachers, or anyone).  I don’t know how Andy is staying afloat.  I don’t know how one or both of us is not back in Four Winds.  I’m no good at this.  I’m weak, depressed, and always, always afraid.  And there we go, folks, the record’s skipping – – you’ve heard it all – heard it all – heard it all before.

And so you see there is very little I can say these days.  I apologize if you have tried to reach me and I don’t write/call back, or you invite me somewhere and I say I can’t go.  It’s not like I have a great excuse except I just don’t want to talk about anything to anyone right now.  And I’m sorry for it.

I am not strong enough to leave it all behind me whenever life calls for socially acceptable behavior.  I know so many strong, determined, one-day-at-a-time parents in worse situations who operate on such a higher wavelength than me – who don’t bitch, or complain, or let on to anyone that there is anything amiss at all.

That’s not me.  I never was the sturdy one.  I’m the cry-baby.  I’m the one who crumbles.

And thus concludes today’s whimpering.

“Dorothy moves to click her ruby shoes
Right in tune with the dark side of the moon.
Someone, someone could tell me where I belong;
Be calm, be brave, it’ll be okay…”

~Guster, Come Downstairs & Say Hello

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.

This is the part of the story where Jonah falls overboard and is swallowed by the whale.

There isn’t much to say except that it has gotten worse, and worse again, and worse some more – today sucked blah blah blah and I’m so sad blah blah blah.  I don’t know how anyone can stand to read this blog anymore at all.

Jonah’s almost guaranteed to attempt to seriously hurt his father, me, anyone around him – not once, but several times a day, wreaking a path of destruction behind him – lampshades crumbled, Andy’s now duct-taped fan knocked over, eyeglasses scratched, coffeemaker smashed & broken, dinner swept off the table to spray-bomb the kitchen in one swipe:

`

On the pictured occasion Andy had called me for help.  “I can’t leave him for two seconds,” he told me.

So I came over and cleaned the kitchen (after taking this picture).  I picked up the obviously just-delivered rice, chicken, sauces, and dumplings, wet-swiffered the floor, and vacuumed the landing rug/steps… my heart pounding, my mind processing the scene, adding all these details to the new normal, a new ramped-up constancy of Jonah’s violent aggressing.

After I had cleaned, we sat together on Jonah’s floor for a few minutes while Jonah sat on his bed, having been banished there after the kitchen scene.  I asked Andy if he wanted me to go get him more food.  “No,” he replied flatly. “I ate.”  (which I knew was likely a lie).

“They’ll help him at whatever place he goes to,” I told Andy quietly.  “He’s going to get better.”

“You think so?” he asked wearily.  “I think he’s just broken,” he mumbled, lowering his head into his scratched-up hands, running his scratched-up hands through his rumpled hair.  Andy sits with his head in his hands a lot.   I’m usually in tears.

During some car rides the three of us have taken since then, Jonah’s managed to escape his harness in seconds, throwing himself up into the front seat to grab a handful of hair, scratching, hitting, and kicking whatever body part of ours he can reach.  Luckily we are usually already pulled over waiting for train, or I have been able to pull over quickly so Andy (or M, when he and I are the ones driving him) can climb in the back and hold down a fiercely struggling Jonah who is head-butting hard, kicking hard, hitting hard.  Scratching to wound, to make you bleed.  No holds barred.  No empathy.

It is more frightening than anything I’ve ever encountered because I have no idea how to fix it, how to help him, how to pull us all up and out of this.  No wonder I watch Match Game and bead necklaces when I am not watching Jonah.  I need mindless 70s television, ritualistic bead-stringing, care-package construction, and Guster-blasting.  Andy is writing, which is good.  At least there is a fantastical creative outlet for him too, though I’m sure he squeezes it in in two-minute intervals if Jonah is home.

At school there are days when Jonah aggresses and then, as encore, smears his poop on the safe room wall – and he often aggresses 9-10 a day (each of which consists of an episode of a dozen or so of clustered individual attacks, they tell us).

I’ve said this before but it bears repeating that we are really, really grateful for Wildwood, whose teachers, social workers, and other staff have continued without fail to support our family and somehow manage Jonah day after day, week after month.  I am grateful for Andy, who is somehow handling this thing.  The title of my blog may be normal is a dryer setting, but our dryer’s in serious fucking disrepair. 

We want Jonah to get the help he needs, and as soon as possible.  Later this month we’re taking him to Child’s Hospital in Boston (somehow), and we’re going to once again ask his psychiatrist for a new med to try.  The psychiatrist is retiring this month, so maybe we’ll get a new one who’s fresh out of school and fired up to help usIf not, I’m going doctor-shopping.

I’m refocusing my thoughts and actions in an unusual but positive way, because it’s all I can do to keep it together.  But most of time I’m tired and bitchy.  I haven’t felt much like writing, or talking to anyone, or going anywhere, or doing anything at all.

I guess these are our days inside the whale.

“Then I said, I am cast out of thy sight, yet I will look again toward thy holy table.”
~ Jonah 2:4

That sounds to me like I know I’m completely in the dark, but I’m going to hope anyway.

“Love and blessings
Simple kindness
Fell like rain on thirsty land
Fields and gardens
Long abandoned
Came to life in dust and sand”

~Paul Simon, Love & Blessings from So Beautiful or So What

Okay, then.   Hope anyway.

This all starts Thursday night and I suppose could make up a very long entry.  I don’t know what’s going to happen yet in the writing of it, but the living of it has stretched out miles in every direction.

This is Jack, M’s 90lb. 2 year-old dog (American Bulldog + maybe some mutt) named after Laura Ingalls Wilder’s childhood dog:

Jack loves to pose, statue straight, like in this picture.  He’s a sweetheart of a dog, curious and full of life, trying to jump up for a chance to lick you.  But he’s also all-muscle strong, and when I took him for a walk Thursday evening and he saw a squirrel, he launched himself forward full-speed; I held tight to his leash and was dragged up and off my feet like a fish on a line, landing with a hard smash on the side of my head, complete with skinned, bloody knees and a stunned shock that left me just lying there.  Jack came running back to lick my face, and I managed to get us both inside so I could lay down to rest.

As the night went on, I just tossed around in bed, my head hurting more and more.  I got up twice to throw up.  By morning there was no question of trying to get to work and by 10am I couldn’t take the pain and puking anymore.  M came and brought me to the ER where I was given an IV-cocktail of anti-nausea meds,  morphine, and whatever they mean when they say “liquids.”   The morphine was magic, whisking the pain away like a cool liquid eraser.  A few hours later they released me with bandaged knees, a negative CAT scan, a prescription for Loritab, a bill for $100, and instructions telling me I had a concussion and should rest for the next couple days.  I didn’t need convincing.  Woozy and weak, I gladly climbed back into bed.

But I knew this would be a long and difficult weekend for Andy, what with Jonah once again aggressing so much that it’s an abnormality when he’s not hitting the window in the car, Houdini-ing himself out of whatever harness he’s in, knocking over the lamp, the fan, the end table, toys, a glass – whatever is in his path – and running at you to kick, bite, scratch, and swat.

His preferred method of getting me is by reaching out lightning-fast (usually when I am putting him in his car seat) to grab my face in one hand, his fingers splayed like a starfish, each nail digging into my skin and scratching hard unless/until I can get away.  Let’s just say my reflexes are growing faster.

I felt well enough by mid-Sunday afternoon to watch Jonah some.  About an hour before I’d arranged to pick him up, Andy called me.  “Can you help me?” he asked, Jonah wailing and screaming in the background.

“Just go get his wagon from the park,”  he told me when I asked what I could do.  So I drove to the house, parked in the driveway, and walked up the street until I got to the little park behind the school.  And there, on the grass next to a green fire hydrant, was the little red metal wagon my mom had gotten him for his first birthday.  I stood for a moment and just stared at it, picturing Jonah flipping out, imagining how Andy managed to get him home, and wondering how many neighbors are witnessing exactly what kind of freakish folk we are.

If I’d had my camera on me I would’ve taken a picture of the empty red wagon.  It felt strange to take its black handle in my hand and drag it back onto the pavement, along to the corner, and down the hill of the street to the driveway with no passenger, a racket of rattling and banging announcing further craziness abounds! – a metaphor for everything I am, and do, and feel lately.

How were the visits yesterday and today with Jonah, M, and me?  I think if you read my blog much, you know.  It was difficult.  Our options are limited.  But we did go to grandma’s twice and he did have some good times too, like here on the slip-and-slide she’d laid out on the lawn…

…but even when happy he asks to go on to the next thing – car ride?  swim pool?  daddy?  train? swim pool?   I’d give a lot to have a pool, our own pool, where we wouldn’t be yelled at if he jumped or ran, where there were no other little kids for him to hurt, where he could swim his little heart out.  But there is no such magic pool.  My friend H even invited us to her pool, but she has a 3-year old so that wouldn’t work.  And we’ve been told that, because of his behaviors, he can’t attend the normal summer camp program; for the first time he has to stay back at school with other kids who, for one reason or another, can’t go to camp.  And guess what they have up at the beautiful Altamont camp?  A big huge pool.  SIGH.

M and I try to devise different things to do with Jonah – an empty park to take him to, a new car ride route, a walk in the woods, the SUNY fountains maybe?  We don’t know.  After 3 and a half hours or so, I am gladly bringing him home to daddy.

Once again I pause to wonder at Andy’s mental and physical fortitude; his courage, determination, and patience.

He is stronger than I – always has been – and I am grateful he is the one caring for our precious, out-of-control, enigmatic puzzle of a son.  Please God get us placement for him somewhere soon – even as it rips at me – I feel like we’re losing him and they can bring him back.  I’m counting on it.

I’ll be not-unhappy to go back to work tomorrow, skinned knees and all.

hard times

“When the rains came, the tears burned, windows rattled, locks turned
It’s easy to be generous when you’re on a roll
It’s hard to be grateful when you’re out of control
And love is gone

The light at the edge of the curtain
Is the quiet dawn;
The bedroom breathes
In clicks and clacks
Uneasy heartbeat, can’t relax…”

~ Paul Simon, who says it all for me today.

“If an empty train in a railroad station
Calls you to its destination,
Can you choose another track?

Will I wake up from these violent dreams
With my hair as white as the morning moon?

Questions for the angels…
Who believes in angels?
I do…
Fools and pilgrims all over the world.”

~Paul Simon; Questions for the Angels

– – –

Well we didn’t all get raptured, but my Great Aunt Ellen and Andy’s parents’ dog, Barkley, did.  (I think Ellen actually passed away right around the Saturday, May 21st 6pm EST rapture time prediction made by the flabbergasted Harold Camping.)

I remember her as a gentle, smiling, strong Irish woman.  Most of my memories are amalgams… impressionistic; soft like fog.  I think she would have laughed at the ‘rapture’ coincidence.

While I knelt beside her at the wake, I prayed but I also almost smiled, imagining my Great Uncle Jack waiting for her – the two of them together and free of pain.  I’m sorry for everyone who has lost her but I am happy for her, leaving the human cage of brittle bones behind to fly away.

I don’t remember if she ever got to meet Jonah.  Maybe only once or twice – but I think I’ll ask her to be a guardian angel for him anyway.  She seemed, even in life, to be the guardian angel type.

Barkley, on the other hand, got to hang out with Jonah lots of times.  Barkley’s parents, Andy’s mom and dad, fashioned a toy for her from a tennis ball knotted in an old sock.  Andy would swing it high and far in the air and Barkley, ever eager to please, would run like the speedy black lab she was and snatch it mid-air (unless they let me throw the toy, and I’d spaz it into a tree).  Jonah loved the display of throw-and-catch, and still often asks for Barkley at random times.

  I will miss her.

I don’t have any photos of my Great Aunt Ellen, but if I did, I’d put them up too.  Photographs convey.  They can even stop time.  That’s pretty powerful.

This is a page of all my favorite photos I’ve ever taken.  I’m no photographer but I love these pictures.  And then there are the thousands I’ve taken of Boo:

I’m terrified of spiders; this was his “Halloween costume” last year.

I sucked my thumb til i was 7 or so…I loved sucking my thumb.  So does he.

Jonah adores the helium balloons my mom keeps buying him but when he’s all done with one, he just lets go and stands there, watching it lift into the sky.

He is unfazed by its loss, its disappearance.

He just wants to watch it fly.