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our days in the whale

Posted in autism, behavior, doctor, placement, Springbrook, The Center for Discovery, Tradewinds, Uncategorized, Wildwood, tagged , , , on June 4, 2011| 3 Comments »

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 us.  If 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.

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something fishy

Posted in Anderson School, autism, behavior, doctor, placement, Springbrook, The Center for Discovery, Tradewinds, Uncategorized, Wildwood, tagged , , , , , on May 19, 2011| 6 Comments »

About 3 or 4 weeks ago I decided to order some Fish Oil chewables for Jonah (100mg a day).  I’d read some articles like this one saying most people don’t eat enough omega-3 fatty oils anyway, and there may be some basis to the theory that the Fish Oil supplements may alleviate symptoms of autism: (from http://autism.healingthresholds.com/)

Some scientists have proposed that autism, dyslexia, attention-deficit/hyperactivity disorder (ADHD) and dyspraxia are a related group of neurodevelopmental disorders that are caused by problems in the metabolism of EFAs (3, 12, 13). The idea is that, for unknown reasons, the brains and bodies of individuals with autism and related disorders have problems converting the EFAs from foods into the forms that are necessary for many biochemical reactions (7). In addition, omega-3 fatty acids seem to be lower in individuals with autism than in others (9, 14).

Both of the omega-3 fatty acids DHA and EPA have been found to affect many aspects brain function (1, 3). Specifically, changing the amount of DHA and EPA in the diet alters the amounts of certain critical genes in the brain, at least in rats (15). In addition, one study found that giving animals a diet with a ratio of omega-6 to omega-3 EFAs of about 1:4 improved experimental measures of cognition in the animals (1). Finally, mood and behavior problems in humans have been linked to a lack of omega-3 EFAs in the diet.

So I figured 100mg a day is innocuous enough (esp. since the kids in the studies cited were given 1-3 grams a day) and may even help his growing brain a little, and so he’s been chewing one daily along with the Risperdal ever since.

Then, on Monday and Tuesday, miracle of miracles, Jonah had zero aggressions at school.  This hasn’t happened in months – maybe a year.  I’ve lost count.  Of course I hear the words of doc Reider echoing in my head:

“Correlation doesn’t necessarily imply causation,” and I know intellectually that 100mg of Fish Oil chewables for 3 weeks has not caused this two-day no-aggression anomaly, but the mother in me couldn’t help but hope, just a little, that I’d hit on something.

Then, on Wednesday, I went to Jonah’s CSE meeting at Wildwood.  I always hear stories from autism moms online whose CSE meeting experiences play out like horror stories, where parents feel ganged up on and must advocate, fight, hell, even hire an attorney to be present – to ensure their child gets the appropriate supports and services.

Maybe our experience was not like this because Jonah is undoubtedly autistic – it isn’t as if he is on any kind of borderline between autism and neurotypical (NT) – and now he is so obviously in need of residential educational placement.  Maybe we’re lucky to have such an enlightened team of teachers and special education school district administrators.  For whatever the reason, I don’t dread the meetings and have never come out of one feeling like Jonah wasn’t given every possible support, service, and consideration.

One thing I learned is we need to keep Jonah on the waiting lists of all the schools, so I called both Anderson and Tradewinds and asked them to put him back on their lists.  I guess I was wrong about the fact that you can’t keep your child on all the lists.

The thing is, November is a long way off, with 3 weeks of time at the end of August and beginning of September between the summer program and school starting up again.  Tradewinds or Anderson could have a spot before that 3-week hell descends upon Andy and me (especially Andy), and since we liked all 3 schools, we decided to take the first spot that has an opening.

I think.

Once again, my time line is gone.  Shit, I didn’t like having it, anyway.

At any rate, the folks from The Anderson School are thankfully willing to come and observe/evaluate Jonah in his school environment, and it’s going to happen on June 14th which is, among other things,

  • Boy George‘s birthday
  • my Aunt P’s birthday (I call her Tree-Shee)
  • Flag Day
  • and the day I found out I was pregnant with Jonah

Not that any of that necessarily means anything, but I still like that it’s happening on June 14th.  And so far as my Fish Oil theory is concerned, Jonah did only have one aggression both yesterday and today, but they were each “very high intensity” according to the dreaded log book, meaning they are aggressions requiring two or three staff members to remove him from the classroom and into the “safe room.”

The residential schools don’t have safe rooms.  They have the staff and capability to handle whatever is happening right then and there, ostensibly.  I don’t know.  One even toilet trains the kids immediately.  It’s all done with ABA, something I was never really on board with, but now of course I question my original stance.  All the residential schools we’ve toured use it.  It works.  All the kids looked happy, the staff dedicated and engaged.  I’m not looking for Jonah to be Einstein or Temple Grandin;  I just want him to be happy, as independent as possible, and able to learn and grow.

My problem with ABA was formulated in 2006, when Jonah was 4.   I think it was born from the hope/assumption that Jonah was going to end up higher functioning by now than he turned out to be (and certainly not aggressive at all).   I thought, if taught through ABA, he’d just be a robot…trained to act, speak, and look normal.  It seemed horrifying to me.  Something Orwellian.  But I had the confidence of a woman whose child, though autistic, was at the very least not a danger to himself or others.  He’d had every modern advantage a child with autism can get.

After all, doc Reider had noticed something was up with Jonah when he was just 6 or 8 weeks old:  our boy was staring at lights, not faces.   (In our infinite ignorance, Andy and I had already nicknamed him “Moth Boy.”)

So we stayed on top of the situation, got him early intervention before he was 19 months old, and enrolled in Wildwood School full-time just before his third birthday.  We thought we were doing the right thing.  If we had got on board with full-time ABA all along, would he be better than he is today?  I don’t know.  Who knows anything when it comes to autism?

If you’ve met one kid with autism, you’ve met one kid with autism.

It’s a puzzle inside a mystery inside an enigma inside a matrix of love, pain, frustration, guilt, helplessness and anger; amazement and joy.  You take wrong turns and make mistakes.  You come to question everything.

Autism is the agnosticism of impairments;

you have to be okay with “I don’t know.”

And so we sally forth.  Andy’s sick with something…the flu?  Walking pneumonia?  He managed to work today.  And I’m tired.  Lots of meetings today, a ton to do at work.

Time for Match Game.

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ostrich mom & forest boy

Posted in Anderson School, autism, behavior, doctor, placement, Springbrook, Tradewinds, trains, Uncategorized, Wildwood, tagged , , , , , , , on April 30, 2011| 2 Comments »

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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hmmmm

Posted in autism, doctor on April 13, 2011| 2 Comments »

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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how to make god laugh

Posted in autism, behavior, doctor, placement, Springbrook, Tradewinds, Uncategorized, tagged , , , on April 13, 2011| 6 Comments »

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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risperdal, waterfall

Posted in autism, behavior, doctor, Springbrook, Wildwood, tagged , , , , on March 28, 2011| 4 Comments »

We had taken Jonah off all the meds completely and it lasted about two days before Andy decided to put him back on the Risperdal; I’m calling the psychiatrist today to advise him.  We were not exactly thrilled with the effect of Risperdal on Jonah but my God, keeping him entirely unmedicated is definitely not the answer.

Off all meds, Jonah turned back into the boy who drove us to the psychiatric center in October, constantly swatting, alternately laughing and crying, able to play and sing but also vicious in his ability to ramp up from 0 to 100 in 0.2 seconds with no antecedent whatsoever, hurting Andy, hitting and throwing things.

I think Andy was ready to go berserk, and maybe still is, but this weekend we were lucky enough to have my cousin D come to help us, 4 hours each day.  We we able to pay her well (thanks for a respite sitter grant from Catholic Charities)  and I came over too to help out.

Both days we mostly rode Jonah around while Andy rested, took walks, went grocery shopping…  We managed him okay, though he did try to attack us – but D knows how to hold kids with autism and other behavioral problems – she works with kids at the Center for Disability Services – so I felt safe and had an awesome person to hang out with while we were spending time with Jonah.

Lately Jonah’s been asking for waterfall and signing it too, so on Sunday…

(after we cleaned up the coffeepot and grounds from the kitchen floor that greeted us when we arrived; Andy had Jonah on a time-out in his room for throwing the whole works, so it gave us time to put things back in order – this is the point at which Andy decided to medicate him again and gave him a Risperdal pill)

…we drove him out to the Rensselaerville Falls even though there is still lots of snow there and we couldn’t walk all the way down to the falls.  He loved it!

With big cousin D:

Then we took pictures of the falls, where a whirlpool spun these circles of ice in an ever-rotating pattern that amazed us!

Of course on the ride hom he threw his shoes, his drink box, and his peanut butter roll at us, but we got home safely and uninjured.  It was a better weekend, probably for all of us, than we’ve had in a long time.

Thank God.

Tomorrow Andy and I have a meeting at 2pm with the folks from Springbrook, who are coming to Wildwood to observe Jonah.   I am nervous about the appointment but also glad we are closer to figuring out a good, safe, hope-filled education plan for our little boo…

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hold it

Posted in autism, behavior, doctor, grandma, placement, tagged on March 22, 2011| 4 Comments »

Hold it. This wasn’t the way it was supposed to
pan out, we both flattened beneath a spinning situation
ironed hot, scorched and out of orbit.

Am I dreaming first your stay, then mine –
clay-making, group, meal-lines like college, the
potent connections made in all those suffering days,
the way the womb became a mother-cushion?

Hold it.

Hold on. This is what I tell you. I see you suffer,
breathe, clutch, push time along to sleep, placing
facts upon a high shelf where they can’t be reached
without standing on the steps.

So stay seated, both
hands inside the vehicle, a ride dizzy but hopefully quick.

Hold on.

—–

There is no normalcy in any day, in anything Andy does, in anything surrounding Jonah, in anything at all.  Through the inconceivable notion of placing Jonah comes an urgency to place him – a sense of time ticking, of there being only so long we can collectively do this thing, keep going, keep everyone safe, keep holding it together, keep hanging on.

The doctor appointment yesterday was awful.  It didn’t start out that way.  Andy picked me up from work and we collected Jonah from school without incident, but on the ride to Clifton Park we passed the exit where grandma lives and Jonah started to ask for grandma and white soda over and over with increasing urgency.  We told him yes, Jonah; later, boo, and ignored it when he hit the back window with his palm. 

Andy dropped me off first to see if the doc was on schedule – they said he was, so Andy and Jonah followed shortly afterwards, walking in just as the nurse was calling his name.  First he was okay; the nurse put the blood pressure cuff on and Jonah said arm squeezy – he knows the deal with that – then she asked us to get Jonah undressed.  We did, and he paced the room in his pull-up, lifting the blinds, walking back to the corner by the door, walking back to the blinds, saying all done at intervals – but then he slowly started to fall apart. 

By the time Dr. Pascual came in and wanted Jonah to lie down so he could listen to his heart and belly, we had to hold Jonah down on the table and he cried, frightened, ramping up for aggression-time.  Then Andy got Jonah dressed, putting himself between Jonah and me so I wouldn’t get hit by any of Jonah’s swats and kicks. 

I stayed behind to talk to the doc for a few minutes.  There wasn’t much to say; the doc saw an obvious need for placement and told me he thought Jonah would really benefit and be happier with 24-hour care. 

Small consolation.  But the truth is that what used to be small consolation is now something we cling to, and hope for, and want as soon as possible.  Even with the oxymoronic torment it brings us. 

So I walk out to the parking lot and I see the SUV’s back hatch is swung open, and I get in the passenger seat and there’s Andy holding Jonah in the backseat, and Jonah’s undressed from the waist down.  I guess he tried to kick a baby in the waiting room on the way out and then Andy half-carried him to the car, Jonah fighting him all the way, and when they got to the car Jonah took off his shoes and pants and pull-ups off, attacking Andy the whole time.  I saw Andy’s hands were spotted with blood, probably from being bitten and scratched. 

I didn’t ask.

I managed to help Andy get Jonah’s pull-up and sweatpants back on him, then we latched him into his harness and secured it to the seat, retrieved his bag from the top of the car, slammed the hatch, and I moved into the driver’s seat to drive us the hell out of there.

Jonah was quiet on the way back.  Andy and I were quiet too.  I asked him briefly what happened, he told me, then we too fell into silence. 

Silence like a door that closes, latched, leaving us in the dark, unseeing, feeling our way along in the black.

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