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Archive for April, 2011

Sometimes it amazes me how much happens in our lives between blog posts.  On Friday morning, one of the specialists from Wildwood School called me at work and she asked for the status of Jonah’s admission into Springbrook and Tradewinds.  It’s not great news.  Tradewinds (in Utica) has accepted him but they’re full and we have to wait indefinitely for a spot for Jonah.  Springbrook may or may not take Jonah, depending on whether they can squeeze him in among the kids they’re bringing back to NY from out of state.

Then she told me the functional behavioral assessments aren’t working – that almost always they can determine the cause/antecedent for a child’s behaviors – at which time they can then implement a plan, which almost always works, at least to some degree.  But with Jonah, the functional assessments come out different every time.  Avoidance, say, or attention-seeking.  And oftentimes, nothing at all.  Even during preferred activities he will sometimes aggress, lightning-quick and without any warning whatsoever.

She told me Jonah’s quality of education is now practically gone; they’re just managing him at this point.  I realized suddenly that, in a sense, I’ve been an ostrich mom, hanging on to the ‘promised placement’ I used to fear and now long for, burying my head in the sand until I can entrust Jonah to the hands of other people – professionals…experts…specialists who will help our boo get better…people who will unburden me from everything I don’t feel like I can take anymore.  With that realization came some sort of a second wind…an epiphany that no one will help us the way we’ll help ourselves, though Wildwood sure is trying.  They are kind and encouraging, diplomatic and sensitive.

They’re helping me look into other options – other residential places they’ve seen and are very happy with…the Anderson Center, they say, in Staatsburg NY, near Kingston, though we once scheduled a tour there and canceled it, back when I thought I could be picky about schools and we wanted something closer.  Wildwood also suggested ruling out physical causes for his aggression – something we’d suspected but weren’t sure if we should pursue because of the trauma all the doctors and travel and tests would cause for Jonah.  Was it worth it, we wondered, when the so-much-more likely cause was simply a severe symptom of autism?  Now it looks like something else really is going on – physically, or neurologically, or God-knows-what.   I know it’s time to do more.

So I approached my boss all a-wreck, explained the situation briefly, and asked if I could take an hour or two to make some phone calls, please.   She was very understanding and said of course.   I went back upstairs, closed my office door, cried, cursed, swallowed half an extra dose of klonopin, and breathed in and out, in and out, in and out…slowly getting my shit together.

First I left a message at The Anderson School to schedule a tour…then I called a parent or two, for advice and guidance.  I left a message with a doctor here in Albany who (one parent told me) can run a full round of blood and genetic tests.  I called Boston Children’s Hospital to make an appointment.  I called Jonah’s pediatrician to order a sedative so I can get him there.  I called a homeopath.  I went online and ordered fish oil chewables.  I researched PANDA and gluten/casein diets – the former I’d never ever heard of, the latter was something we’d always dismissed for Jonah, since it never seemed he had any stomach issues, really, and we didn’t think there was much more than anecdotal evidence to support trying it.  Also, since Jonah’s recently been clinically diagnosed with juvenile idiopathic arthritis, I called the Arthritis Foundation as well, told my story, and was promised they’d get back to me soon.

Now momma-ostrich is awake and determined, shaking off the sand.  We’re gonna figure some shit out no matter what I have to do.

That was Friday.

Today M and I picked up Jonah to give Andy a break.  It was a beautiful springtime day in the 60s with sunshine, high pulled-cotton clouds, and that wonderful new-season-scent that pervades everything.   We went to the woods behind Russell Road park and Jonah practically skipped down the path, smiling and happy.

He loves the woods, is gleeful in the forest.   He was so good for us.

We let him slide in the dirt and toss handfuls of pebbles, hug birch trunks and throw twigs around.  (He was unable to hurt anyone, even if he’d wanted to, though he was as far from aggressing as I’ve seen him in a while).  Unencumbered by rules and regulations, alive and free to do as he pleased, he scampered – digging in the leaves and earth, running down the path ahead of us, laughing… again my sweet, fun, awesome little boy.

When he’d had enough of this particular forest, he requested train, donut, and waterfall, all his favorites and all within reason and reach.  After a speeding train and a third of a donut, which he politely handed back to us:  no donut – we drove on to the falls.  For the first time this year we walked down to the water, though he didn’t ask to go in.  Again he cavorted, explored, told me bye bye – and as I walked 10 feet or so away, he stood watching and listening to the falls, at home in his little zen-place.

In the midst of the storm of our lives, it was a pretty good hurricane eye.

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rewrite

“I’m working on my rewrite, that’s right
I’m gonna change the ending
Gonna throw away my title
And toss it in the trash
Every minute after midnight
All the time I’m spending
Is just for working on my rewrite, that’s right
I’m gonna turn it into cash

I’ll eliminate the pages
Where the father has a breakdown
And he has to leave the family
But he really meant no harm
Gonna substitute a car chase
And a race across the rooftops
When the father saves the children
And he holds them in his arms

And I say help me, help me, help me, help me
Thank you!
I’d no idea
That you were there
When I said, help me, help me, help me, help me
Thank you, for listening to my prayer…”

© 2010 Words and Music by Paul Simon

This has been a tough day.  I felt anguished and guilty, helpless…I wanted to leave.

But eventually I dried my stupid tears, took pictures of beautiful things, and kissed my little boy (with his incredibly dirty face and feet) before returning to the basement apartment to watch Match Game on DVR.

At least my new Paul Simon CD came in the mail today;  Paul’s one of my favorites (yes, I do love other bands and artists besides Guster)… I love his new music and was cranking it in the car today.  I tried to put it on when Jonah was in the back of the car but after 3 seconds or so he cried:  Cranberry Guster?  So I changed the CD and we drove to see the train, which never came.

“dir-fee!  dir-fee!” he called over & over until I realized he was saying “dirty feet.”  He’d been running around the yard playing barefoot when I arrived after work.

So to make up for the coherent post I just don’t have it in me to write, here are some pictures:

train comin?

in the background, buddha looks on at the near-blooming tulip & stonepile

magnolias blooming outside our kitchen window at work

dirty feet

i love cushy yellow ball

we’re forever crossing bridges.

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I will not remember today as Easter so much as the last day of Jonah’s vacation.  Tomorrow he’ll probably be a hellion at school, but he wasn’t so bad this week, as long as it must have seemed for Andy.  Jonah adores his daddy, after all, and when he’s home on break his routine is filled with no-pressure stuff like car ride and grandma and peanut butter roll.

Besides, Easter doesn’t feel much like Easter this year.  My mom, God bless her, made a big ham dinner last night and separated it all into Tupperware and packages, some for Andy and Jonah and some for M and me.  Today when M and I watched Jonah, we saw the train and stopped at grandma’s to visit and pick up our share of her Easter feast.

There’s no sitting down and eating it, you understand, without thrown food and overturned dishes, splashed drinks and a constant Jonah-vigil not worth attempting anymore.  Jonah showed little interest in the Easter basket grandma filled with bubbles and chocolate, jelly beans and spinning tops, running instead up the stairs, down the stairs, and up again into the spare room where he jumped on the bed screeching.

Then he wanted grandma to go for a ride with us.  When we’d buckled him into his harness, his beloved grandma seated next to him, he decided:  bye bye grandma.  You want to go bye-bye with grandma, or you want grandma to go bye-bye?  We didn’t know.  We never know.  He changes his mind before we can puzzle it out:  Grandma come on car ride, he said.  So we headed off for a tour of Latham and Loudonville but only got maybe 1/2 mile down the road before he pronounced:  all done grandma.  So we turned around, drove back, and dropped my mother off.  I ran inside to get Jonah’s basket and our dinner, and we left.

M and Jonah and I ended up at the Rensselaerville Falls, as usual; it is much warmer now and the snow has melted in all but the most shadowy pockets of the forest.  As usual Jonah ran way ahead of us and only wanted to stay a short while; even he understands it is still too cold to walk down to the water and wade.

This morning my friend texted me a picture of her little 3-year-old boy, seated on the couch with two baskets, a big smile on his face, the message reading:  Happy Easter! 

It’s the kind of thing you’d send to a bunch of people in your address book.  I stared at the picture of her sweet little boy, his huge smile — the Easter Bunny came!   I texted Happy Easter back to her and put the phone down, wondering:  What is it like to raise a neurotypical child?

I’m sure it’s actually harder to dress your kid(s) up, get to church and the family gathering, then come home exhausted with the kid(s) all hopped up on candy.   Hell, I ate half Jonah’s candy myself without him ever knowing or caring, and the only place we had to go was on a car ride to the woods to watch a waterfall…so we had an Earth-Day Easter…

I took a lot of pictures today, as you can see.  I also made some necklaces and put together a care package for someone.  I like to imagine the surprise of getting a box of fun things out of nowhere and for no reason at all. 

Guster has this video I love and play whenever I start to lose my faith in humanity, when I feel my hope waning.  It always makes me feel better.  I want to be a part of things that make people happier, even if it’s just one person at a time.

Anyway, after M and I ate our homemade dinner, I polished off a piece of J.S. Watkins cheesecake my mom had procured, then a healthy slice of humble pie as well.  Ah, all the complaints I spew.  And how small my little life really is.

Easter was delicious.

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Saturday, 8:07pm

Today feels like two or three days smashed together – one of those days when by 8pm, the morning feels like it was yesterday or the day before that.  Time is strange.  I slept in til 8:30am or so, a beautiful thing.  I ate a delicious breakfast M made for us.  I went to a hair salon and got my hair cut, highlighted, and colored auburn.  The I met D at the house at 3pm to visit with Jonah, help her watch him, and give Andy a break.

Now I’m home again; it’s 8pm.  And that breakfast seems like three days ago.

I can’t imagine what life is like for Andy.  I’m sure it could be worse, but at times it feels like Jonah is thoroughly and utterly of the highest maintenance there is.  Andy left when D & I got there, and while this is not exactly the order in which our four-hour chunk of time unfolded, it’s pretty close:

We start off with a car ride, and I tell you if it wasn’t so un-green and crazy-expensive to do it,  I swear I’d drive that kid around forever, because strapped in and listening to his favorite Guster album, the one he calls Cranberry Guster, he is mostly just fine.  While it is true he’ll hit the window, kick the console, and throw anything in the backseat at you, he mostly is calm, sucking his thumb, occasionally singing or humming, and generally pretty happy.  Once it is more spring-summery we can take him to the Rensselaerville Falls or wherever else he wants.  The trick, though, is to never be too far from the house so he can change his mind on a dime, request grandma or home, and be within a reasonable distance of said request – preferably on a familiar path so he can direct us this way or that way as well.

I understand it might seem like we spoil Jonah, but at this point we’re just trying to survive.  When the Tasmanian Devil is in your care, you’ve got to mitigate his crazed behavior any which way you can.

After our car ride we go into the house because it is icky outside, windy with cold drizzle.

Brownie meal? he requests.  Okay, boo, mama will make a brownie meal.  Funny thing is he rarely eats the damn brownie.  D follows him around the house while I microwave the meal.

But before I’ve even presented him with the meal, he’s requesting something else: Green leafy?  So we put a plate of salad greens and blue cheese next to his brownie meal and he requests white soda and D pours some because he’s peed on the potty but he’s not sitting down to eat – he’s running from one room to the next, alternately requesting daddy and downstairs and brown car (my car) and bath.

Of course there are small minutes, tiny pockets of time when we engage him with black camwa or a bouncy ball, but mostly it’s near-constant ever-changing activity with a side of trouble brewing.

There are two baths during our stay and very little eaten of his dinner.  There is plenty of agitation and swatting.  D needed to hold him in his room because he lost it and tried to attack both of us.  She’s trained in the holds because she teaches and works with kids like Jonah, thank God, and she’s smart and sharp and unafraid.  Both D and I are constantly on guard, and if Jonah approaches we almost always wince and/or tighten, backing away, expecting him to aggress.

I’m no help while she’s calming him so I go in the kitchen and do what I usually do when something like this happens:  I clean.  I can hear Jonah kicking the floor and I ask D if she’s okay and she answers yes almost cheerfully so I wet-swiffer the kitchen with the force and efficiency of Rosie the Robot.   I go into “let’s clean something” mode because (a) Jonah has usually tipped over chairs, tables, food, and whatever else he can reach to throw, and (b) it makes me feel like I can do something useful and gives me a sense of control in a situation that is completely out of control.

But Jonah’s new weapon comes with its own ammunition:  shit.  At one point when I am putting away the swiffer and D has him on time in his room, he grunts hard until he is purple and then bolts from the room, his hands brown with poop.  He runs down into the far corner of the basement, making brown prints on various parts of the wall on the way, and then bangs on the wall with both palms before running back upstairs to tip over a kitchen chair, break an end table, and return to his room to try and attack us again.

We put him back in the tub; D gets him his green soap while I go through the house cleaning the walls and upending the table and chair.  After calming down and having some more quiet time in his room, he runs back out, requesting brown car and wanna–go-see-train and daddy.

And so on.

The kicker is D tells me Jonah’s much better this weekend than last, when I was at the convention all weekend.

Meanwhile, and I know I invite this because I blog publicly, I’m hearing suggestions from everyone who e-mails me.  Try this.  Take him here.  You have to (fill in the blank).  Sometimes the comments and suggestions are diametrically opposed.  I appreciate this little supportive community following my crazy-ass life more than you know, and I listen and hear you all.  Trust me, we’re looking into everything and doing all we can within the realms of possibility.  We are going to make mistakes and we are going to fuck things up sometimes.  But we are trying hard to make things better for our son and I’m just here to tell the story.

I have to again conclude by telling you that Andy is bearing the lion’s share of all of this with remarkable aplomb.   I am grateful for his fathering and nurturing our boy…for keeping him safe and well fed and as happy as possible…for taking him on endless rides in his little red wagon and in the red car and to grandma’s…for getting him ready for school and on the bus every morning and off it every day…for enduring scratches, bites, kicks, head-butts, sleepless nights, and loneliness.  I tell you I could not do it.  I know this with a certainty that feels like shame.

I love my son with all my heart but I could not do it.

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hmmmm

Not 5 minutes after I posted how to make god laugh, Jonah’s pediatrician called on my cell and said he was going to contact a pediatric rheumatologist in CT and see what tests could be ordered locally. 

Is he reading my blog?  Coincidence?   hmmmm

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Please forgive me if I don’t answer every comment individually; the truth is I have two jobs now, a full-time gig and an assortment of writing gigs to complete when I get home from visiting with Jonah.  It doesn’t leave a lot of time to write back to all of you, though I want to.  But I hear you all and value and embrace everything you say to me.  And I thank you for reading…for not judging…for standing behind me and holding me up like supports to a shaky building.

Thank you.

My annual work convention went smoothly, exhausting as it always is, and I met lots of great people there.

Jonah and Andy managed well, considering Jonah’s aggressions at school on Thursday and Friday.  My cousin D was there to help, like an heroine/saint.  And Jonah did well yesterday – only one aggression at school – so when I got out of work, Andy and I gave him a ride to the train (something he’s been requesting a lot again lately, as well as peanut butter roll from Stewart’s) and we talked about the whole Springbrook vs. Tradewinds problem.

I think we’re both on board with the bird in the hand, with sending him to Tradewinds, rather than risk losing any placement at all if Springbrook can’t get him in their program.  But we still like Springbrook too and are hoping they’ll advocate for us.  I don’t think this is a pressing decision because neither place has an opening now – I may call Tradewinds today to see if they know how soon Jonah might be able to get in.

We’re both just so tired.  Especially Andy, I’m sure, though he seems stoic, brave, and resigned.  Now that spring is here Jonah asks for parks we can’t take him to for fear he’ll attack another child.  The waterfall is a possibility but it’s 40 minutes away and there’s no guarantee the snow isn’t gone yet.  And his left leg is bad.  He limps markedly every morning and after we give him a wagon ride, another thing he loves lately.  I called his pediatrician on Monday, e-mailed him on Tuesday, and have yet to hear anything.  You can’t tell me they can’t give him an MRI/x-ray/blood test right here in Albany without having to drive to Boston – a near impossibility considering his aggressions.  WTF.  I’m going to call back today.

Maybe he’s aggressing more because he’s in pain.  He can’t tell us when something hurts – he seems to consider everything about his life and his environment as something he must bear, and he does so with aplomb, except for when he is violent, of course.  Is it his only voice, the screaming and the scratching, the biting and the kicking?

My poor little boo.  Andy and I both think the placement will help all of this.  They have doctors and psychiatrists there, professionals and people who are trained to work 24/7 with these children.  We’re now reconciled not only to the inevitability of placement but to its necessity as well.  And we’re banking on its helping our son, bringing out the best in him – the smiles, his ability to learn and grow and be as independent as possible – to allow him to reach his fullest potential, even at the cost of “giving him up.”  If you’d told me 10 years ago that this would be my life, I would not have believed you.

But as they say, if you want to make God laugh, just tell him/her your plans.

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Cheryl DeDecker from Springbrook did call us and she basically told us that Jonah would not be able to enter their current program because of the level of his aggression (the kids share rooms and he could hurt his roommate) but that they think he’d be a perfect match for the new residences they are building, where every child has his/her bedroom.  The problem is, the new buildings are evidently earmarked to get NYS kids attending out-of-state programs back into NYS.

She wants to advocate to place Jonah in one of the new buildings under construction right now, and I told her I would help her do so, but there’s no guarantee we’ll be able to get him in – and if we did it would be October or November at the very earliest.  I don’t know if we can make it until then.

On Thursday, April 7th, this is (in part) the note Wildwood sent home in his log book:  Jonah had a tough day today.  He’s had 5 aggressions – 3 being of very high intensity.  We had difficulty getting him in and out of the safe room because he wouldn’t stop aggressing.  We had to hold him in the safe room until he was calm enough to leave. 

Next day:  Jonah’s had 6 aggressions today – some more intense than others…

Meanwhile he’s already been accepted at Tradewinds and we liked it there too; they will likely have a spot sooner and their kids all have their own rooms. Andy and I don’t know what to do. We don’t want to risk losing the Tradewinds spot by holding out for Springbrook, which may or may not take him at all.  Not that we know when there will be an opening at Tradewinds, because we don’t…but it’s a bird in the hand.

Andy says he’s doing okay emotionally – my cousin D came and helped him this weekend while I was working at our yearly convention in Saratoga.  They shaved his head because it was getting so long, and I came over Sunday to help for a while; Andy was just getting him out of the car and Jonah was limping awful – so pronounced it brought tears to my eyes, and I must have cried for 4 hours over our whole situation and probably exhaustion from the weekend mixed in.  Jonah’s been limping but it’s getting worse, and there are no pediatric rheumatologists in our area.  We have to figure something out though, because it’s obvious something is really wrong with his leg – every morning he limps now, Andy tells me.  Andy is holding everything together while I fall apart, weeping and worrying.  Paarents of these kids are not supposed to be so weak.   It’s simply not allowed.

And yet I’m the weak one in a sea of strength.

That’s going to have to be part one of two, because I’m out of time to type…I’ll leave you today with some new pictures of Jonah Russell:

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