Archive for December, 2010

One of Jonah’s all-time favorite things, as I’ve mentioned before, is swimming.  No, he’s not in the polar bear club or anything…but the Center for Disability Services has a great heated indoor pool and the other day Andy and I took him there to swim.  The kid takes to the water like a fish, and taught himself to swim.  He has no hesitation about putting his face in the water and can swim great lengths underwater, his lithe body undulating quite naturally.  I love watching him – he certainly didn’t get this ability from his mama; I have to plug my nose just to go underwater.

Here I should pause to give a major shout out to Andy, who is watching Jonah (with some help from my mom) almost exclusively by himself during school vacation as I go to work during the day.  I think Andy is taking Jonah sledding today, another of Jonah’s favorite things (Andy’s parents got Jonah new sleds for Christmas), probably down the hill behind the Barnwell Nursing Home in Valatie, a kick-ass sledding spot where lots of Columbia County kids gather to slide.  Jonah’s got endless energy for this and can slide down and run back up countless times while the rest of us pant and struggle.

So thank you, Andy.  You are a wonderful father and Jonah is so lucky to have you.  Dress warm and have fun…I appreciate everything you do.


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So since this blog isn’t about me, I’m going to make the “me” part brief.  Thank you to all who have voiced concern about me while I was in the hospital.  Jonah attacked me on Saturday the 11th and knocked me backwards into the tub when I was changing his diaper in the bathroom, and my face was scratched up all to hell.  So the Reader’s Digest version of it all is I had a breakdown on Monday December 13th and checked myself into Four Winds mental health facility (the same place Andy went for a stay two months ago — we should get a family discount).  They take away your cell phone, so anyone who tried to text or call me, I apologize for it going unanswered.  At first I hesitated to reveal where I was and why, but I despise the stigma that is associated with mental illness and I refuse to sweep it under the rug, even if it leads people to believe that “I went crazy.”

I was released on Tuesday and am very grateful to the excellent staff of nurses, therapists, doctors, and other workers at Four Winds for helping to lead me out of the pain and back into the world, now so much healthier and better equipped with coping tools and new friends (I never would have believed how attached I could get to the other people there and how much I will miss them all).  I desperately needed the respite and the intensive therapy; I am so much better now.  I have rid myself of all kinds of demons and gained new methods of living that I embrace wholeheartedly (meditation, imagery, distress tolerance, radical acceptance, and other DBT techniques). So there it is.  I’m going back to work on Monday and am eager to do so – I miss working, and am grateful to my boss for her incredible understanding and to my co-workers for chipping in to pick up my workload while I was gone.

Jonah was well taken care of during my stay and is doing about the same.  We are applying at four different places to see if we can get him in a residential educational facility (which could take months) and in the meantime we have been approved (I think) for a temporary respite home in Guilderland where we can use 30-40 days a year (from what I understand) to place him there overnight so we can have a break during school vacations and other times we need help.

He still has happy days and sunny smiles, still asks for the train and for grandma and car rides…

…and he still has random aggressions that are sometimes provoked and sometimes come out of nowhere.  I am so glad to see him again; I missed him terribly and want to spend as much time with him as possible, though I no longer am able (physically or emotionally) to be alone with him, so I have someone around to help in case he attacks.  Andy and I took him to see a child psychiatrist yesterday who wants to see him again in 6 weeks; he is hesitant to monkey around with his meds too quickly, which I think is smart.

That’s all for today.  I’m still tired and resting a lot; I wish all of you who celebrate Christmas a happy and blessed one.

I’ll be back soon.

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Amy is in the hospital and has been since Monday Dec 13th.

She is doing fine and wanted to let everyone know not to worry she’ll be back soon.

~ M

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The word itself sounds crisp and almost pretty, a deliberate and careful motion to put something in a certain spot.  I love words but I don’t like this one, despite its euphemistic connotation in the context of educating Jonah in a residential setting somewhere.  Somewhere else.  Somewhere Andy and I won’t be.  And today is the dreaded meeting to decide about it.

He was doing so much better on the new dosage of meds, and then yesterday at school he fell apart again.  Five attacks, lots of time on the scooter platform with his weighted blanket.  It’s the worst timing there could be, for the teachers in his class will weigh in heavily on what to do here, and if he is getting such a low quality of education now that they’re simply managing his behaviors, I can understand a move toward residential education.  Understand, but only intellectually.  In my heart this is all unthinkable.  An unimaginable move.

I harbor resentment for all the normalcy other children get to have, what with arguments over homework and setting the dinner table and who pushed who, all the while excitedly counting down the days til’ Christmas…and then I squelch the resentment by reminding myself that there really is no such thing as normalcy:  normal is a dryer setting, I declare here after all, and pain and joy and suffering and hope and anguish are everywhere.  

I feel guilt too, for what could I have done differently to change what has happened?  What should and could I be doing now to effect a difference, in our lives, at Wildwood School like the parent volunteers, in the community, to advocate for better care and treatment of individuals with autism and other disabilities?

There are so many things I don’t know.  So much over which I have no control.   So much helplessness.  What is going on in our boy’s heart?  In his body, his brain?  What does he wish he could tell us?

Are you in pain, sweet little boo?  Are you frustrated because you want to speak volumes you cannot express?

Can I love the pain out of you?  Hug the frustration away?

 He lies on the table with his markers lined up next to him.  He is looking out of the window with his little butt in the air, dressed in comfortable sweats, asking for grandma.  His dependence and innocence are complete.

Fifty years ago he may have been hidden away in a back room somewhere.  A few hundred years ago he may have been labeled “possessed” and burned at the stake.

Today he will be the focus of people who love him, who will work together to get him the best care and education possible. 

But I’m really scared anyway.

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Happy boy is still with us – only a few attacks here and there, none of which I’ve witnessed, at least not in quite a few days now.  Maybe even a week.  We took Jonah to a new pediatrician on Monday – one who specializes in developmental disabilities and behavioral problems.  I loved him; he’s level-headed, kind, and intelligent.  If we want Jonah to have his second chicken pox shot or the flu shot we’ll have to go back, but we might opt out of both of them this year.

We’re putting the wheels in motion to go to Boston to see a pediatric rheumatologist (there aren’t any around here and the ones for adults won’t even see children, for some reason) because of Jonah’s uveitis and iritis, and the synovitis they found some time ago in his hip and jaw.  He may have pediatric arthritis, they’re thinking, so that’s our next big medical project to tackle.

Also on the Jonah horizon is a big meeting tomorrow with the school district officials – teachers from Wildwood will be there, and his caseworker from Catholic Charities, and of course Andy and me, and we’ll try to decide what’s the best course of action educationally and placement-wise for Jonah.  I know we have to at least investigate our options but now that he’s so much better I want to keep him home and at Wildwood School.  They say he’s participating more and yesterday he had no aggressions at school at all – granted it was a half day, but still…he came home with math sheets all completed (it still baffles me that the kid can solve math problems) and a hastily scribbled art project (he’s not the biggest fan of coloring, though he does love to carry markers and colored pencils around, & roll them on the table and floor).  He still falls asleep early but he sleeps well, and peacefully, and I am grateful for every day he is himself again.

I love to see him skip around…hear him happy, even loud, again – lately he has been singing and shouting out the “hear-ar-ar-ar-ah-art” part to Guster’s “This is How it Feels to Have a Broken Heart” (which, despite its title, is actually kind of a lively song).

“We’ve colored in the lines and followed all the signs
Fought a war till the war was over;
Said you’d never be the kind with an ordinary life…

~ Guster

(You can say that again, guys)

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“Pinned down in this heaven
I’ll die a thousand times
Aware of the damage ahead
I’ll leave the pain behind

Another day, a perfect day
A twinge of pain, the sting of the needle
Staring at the walls provide
A brilliant sight through eyes of the needle

So warm at the bottom
Warm never felt so kind
And for a moment or two
I leave it all behind…”

Perfect by Guster

If I were a superstitious person I might refrain from the kind of optimism I’m embracing, but Jonah’s had two-going-on-three pretty damn good days and my relief is palpable.  The new dosage of Risperdal (along with weaning him off the Clonidine) seems to be both buoying his activity and decreasing his aggression.  He smiles and plays again, giggling at some silly musing.  He babbles to himself in the bath again, inventing songs, swishing the water around, singing snippets of Guster and the Beatles…

He’s the child I almost forgot was in there somewhere.

We went to my mom’s today, where he greeted her with a big smile and she damn near broke down crying with joy.  “Oh thank God,” she said.  “Thank you God.”  He played on her stairs and requested “outside,” where he sat on her brick steps, smiling at the sun.

I’m a little cautious to enjoy this too much for fear of it all crumbling, but I can’t help it.  I know it leaves me more vulnerable to an emotional crash if he builds up a tolerance to the new dosage and gets all aggressive again.

I know he still has two attacks a day or so at school, and I know he is still mostly riding around on the scooter there, wearing a weighted blanket.  I know the triumphs of participation and breakthroughs of smiles are still few, but they’re seeing them at school every day.

I allow hope to prevail, risk of disappointment be damned.

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sleeping boy haiku

Jonah, dreaming sweet,

speaks the language of genius:

absolute silence.

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Since he’s been on Atavan, Jonah’s had long periods of drowsiness punctuated by his personality shining through, complete with talk of train and moneycoin.  (Was there a time when I actually was exasperated by his innocuous obsessions?)

Two doctors today – the eye doc, and Jonah’s first visit with a child psychiatrist.  The good news is that the eye doc said the pressure in his left eye was much lower and better, though they had to come out to the waiting room to give Jonah the eye pressure test.  Jonah had flipped out, attacking Andy, and Andy restrained him in a waiting room chair so they could get a quick pressure read.  Then Andy and Jonah left, and I stayed behind to talk to the doc.

After that they picked me up and we went home to wait for our next appointment.  Jonah seemed confused, first asking for one thing and then another.  “Museum?”  he asked.  “Toon-fish-sanwich?”  He remembers that when we go to the museum, we usually stop at Subway for a tuna fish sandwich.  He rotated through the list of things he wanted and then settled on bath.  After a few minutes in the bath, he attacked me, and Andy held him in his room until we could calm him down.  He’s on all three of his meds at this point and I’m thinking why are the meds simultaneously doping him and not really mitigating the aggression?

Finally we calmed him, mimicking taking deep breaths (let it out through a straw, bunny, breathe deep through your nose) and talking him into another car ride to the psych doc, where the social worker from Wildwood met us.  Jonah had an aggression in the waiting room and then another almost as soon as he went in to the doc’s office.  Andy ended up taking him out to the car while I spoke to the doc – which turns out to have not been the most ideal plan, as necessary as it seemed at the time, because the doc’s got to interact with Jonah.  So I spoke at length with the doc about Jonah; I asked a ton of questions, he suggested both Jonah and I likely had post traumatic stress disorder (which I always thought was for war-scarred soldiers and natural disaster survivors; when I asked what they did for that, he told me generally, not much), he doubled the dose of Jonah’s Risperdal while weaning off the Clonodine and warning us to use the Atavan sparingly, and we made another appointment in 3 weeks.

Before I left, though, I learned a hard lesson or two.  One is about judgment.  For instance, Andy and I had always been anti-meds – but for us that was like being 22 and saying you’ll never dye your hair – easy to say at 22 because you haven’t got any greys.   We never needed to medicate Jonah, so it was easy for us to be anti-med; Jonah clearly had autism but we thought we had done all the “right” things – early intervention, a variety of therapies, specialized schooling, etc. and so he was doing well…until the aggressions began.  Then we were no longer 22 year olds with nary a grey hair — we were rapidly aging, fast-greying, hair-dyeing champions.  I don’t mean to imply that we’ve suddenly become pro-medication, but it’s certainly become something we needed desperately – at least temporarily – in order to stop what was happening.  As a result, I’ve ceased judging others’ decisions about pretty much anything.  What works for one will not work for all, and that’s just the way it is.  We clearly have to try and try and try until we find the right mix of therapies and medications and whatever else until we have our lively, happy little boy back.

“Have you seen this kind of thing before?” I asked the doc naively after relating some of the more violent incidents.  He nodded in that deliberately-patient way you do when someone asks an incredibly innocent question.  “All the time,” he answered.  He told me two or three stories of parents beaten badly by their children before the families could get help – of situations far worse than ours.  When I asked what is done for these people in emergencies, he said unfortunately, not much.  When I asked why nobody could help us, he told me the system is essentially broken.

Then I stopped asking.

Andy had gone home with Jonah so K from Wildwood generously offered me a ride home. I thought a lot today about how there doesn’t seem to be any clear plan to fix any of these broken things.

How dangerous a position so many people are in.

How somebody needs to do something so there is a place for people in unquestionably dangerous emergency situations – a facility to immediately accommodate children who are non-verbal, or violent, or mentally ill, whether or not they are toilet trained, or have a high enough IQ, or are the right age, or carry the right insurance.

How I should become an advocate for better care, once the smoke clears on my own mess.

How, as frustrated and passionate as I am about this, there realistically is little hope of me making any difference.

It’s also beginning to look more and more like residential educational placement is the best option for Jonah, with the goal of getting him back home as soon as possible.  The reality is still far enough away to be an abstraction in my mind, though it is beginning to enter my consciousness in a way that feels like 90% horror and 10% relief.

That’s assuming there is a place for him, and Wildwood can present a strong case to the school district for its necessity.  I used to think we had the strongest case on the planet; now I know they’ve probably seen it all.   But the folks at Wildwood are stating that the quality of Jonah’s education, where once excellent, has deteriorated into basic behavior management and sensory input (riding him around on a scooter with a weighted blanket on it) with very little participation on Jonah’s part.  I don’t want that for my child.  I want him to enjoy activities and benefit from academics, play and sing and do all the things he did such a short time ago.   We’ll try the different dosages and hope for the best outcome, so we can keep him home where I want him.

I want Jonah to shine.

If that means we need to place him in a facility, then I best start coming to terms with that.  God help me come to terms with it.  I don’t know if I can.  Maybe I can.

But not today.

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