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Posted in autism, behavior, placement, Uncategorized, Wildwood, tagged , , , , , on January 12, 2011| 4 Comments »

Yesterday was day two of Jonah having zero aggressions at school – not sure how long it’s been since we’ve had two days in a row, and once again the hope rises in me.  The people at Wildwood are determined, wonderful social workers, teachers and staff…they do not give up but rather continually change and tweak and modify each child’s individual program, tenaciously working toward an answer, resolute in their skillful, caring methods to lead every child to his or her best self.  I am so grateful to have them.

Yesterday after work M and I came over to the house to watch Jonah for a while.  Andy went to the library and to pick up Jonah’s pull-ups, and I played with Jonah (he loves to jump on the bed, yelling “Jump!  jump!  everybody jump!”), fed him his dinner, and put him to bed.  It was so nice to spend a little time with him, brief as it was, even though I had a nagging fear in the back of my head the whole time that we was going to attack me.  On Saturday M and I took Jonah for a few hours but when I brought him back inside the house and asked him for a kiss, he tipped his little head up toward me and as I bent down to give him a kiss, he grabbed my glasses with one hand and pulled a chunk of my hair in the other.  Andy quickly intervened, leading him away, and I just left, saddened by the end of what was, all in all, a nice visit.

Today it’s snowing hard – we’re expecting 7 to 12″ before the storm’s over, so there’s no school.  Andy is taking Jonah to an early morning eye doctor appointment in this mess, and then maybe Jonah will want to play in the snow or go sledding.  I hope Jonah is good for Andy today.

Yesterday I did some research on four more schools, all of which have 365-day-a-year residential programs for children with autism:

The Anderson Center for Autism (near Kingston/Rhinebrook) will be conacting us in a day or two to set up a tour.  http://andersoncenterforautism.com 

Devereux (Red Hook) Campus – 1:1 ratio – I left a message with them so I don’t know what our status is – supposedly all these schools have been sent admission packets about Jonah.  http://www.devereuxny.org

Tradewinds Education Center at the foothills of the Adirondacks – Utica/Rome (serves cerebral palsy and autism kids) – they have a 12-month residential school program but have not yet received paperwork on Jonah.  They have no current openings but there should be 7 or 8 this year.  http://www.upstatecerebralpalsy.org 

Springbrook (near Oneonta) – spoke with admissions coordinator Cheryl DeDecker; she did not receive any paperwork on Jonah yet.  They are a 365-day-a-year program, and currently there are no beds available.  There should be beds in April and May, and in September they are starting a brand new autism program which can handle 24 more students.  www.springbrookny.org

There is another one in Massachusetts that I forget the name of, and our caseworker from Catholic Charities told us about a place in Baltimore, MD (I forget the name of that one too) that takes kids w/autism who have severe behavioral problems, puts them through an intensive ABA program for 3-6 months, and then sends them home again.  We’ll be looking into that too.

If anyone knows anything about any of these programs or places, or knows of any other ones (the closer to Albany, NY the better), please share whatever you know.  The more informed we are, the better.

The snow is so pretty outside my window at work right now.  I’m going to just stare at it for a while and try to forget that I’m searching for a place to send my precious boy away.

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placement

Posted in autism, behavior, Uncategorized, Wildwood, tagged , , on December 9, 2010| 8 Comments »

Placement.

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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the child I almost forgot was there

Posted in sensory stuff, Uncategorized, Wildwood, tagged , , , , on December 4, 2010| 2 Comments »

“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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houdini on pcp

Posted in autism, behavior, Wildwood, tagged , , , , , , on November 19, 2010| 1 Comment »

Yesterday I picked Jonah up from afterschool program with more than a little trepidation.  Wednesday, you’ll recall, was hell, and for no reason anyone could figure…aggression after attack, all day long and home as well.  Andy came over to help me; he was there to get Jonah out of the car (which was very cool, because I’d about had it) and he was there when Jonah attacked again a few minutes later.

When I woke up Thursday morning I thought: which kid is the universe is going to hand me today? I guess Jonah’s like a box of chocolates: you never know what you’re gonna get.

sweet angel boy, playing in the bath

I admit I was a kinda gun-shy on Thursday when I picked up little Taz. And I was on target this time.  They told me he’d been in attack mode the whole time, right from the get-go when he came off the bus kicking and hitting.  I thanked them, apologized, and managed to get Jonah in the car without incident. He was safely buckled into his new 5-point harness contraption, but halfway up the first street there was a disabled vehicle and it gummed up the works for about ten minutes before we could get around it.  I guess he got impatient.  For whatever the reason, he started kicking the console, hard.  Bam BAM BAM BAM BAM, the whole time trying to reach me, stretching his body as far low and long as he could.  BAM BAM BAM BAM BAM until I thought he’d break his foot.  “No!” I yelled back at him, the traffic moving now, me dividing my attention between the road and my rising panic:

I’m in a horror movie and there’s a wild creature in the back seat about to escape his bindings.  I hear the unmistakable clicks of Jonah unbuckling the harness buckles, squirming around frantically to get at me: Houdini on PCP.  I’m having visions of Damien Thorn scratching and clawing at his mother’s face in the movie The Omen – and I’m approaching the intersection but Jonah’s succeeding, he’s getting loose, and the kicks are closer – BAM BAM BAM BAM – and I’m pulling my car seat as far forward as it’ll go, smushed into the steering wheel, thinking he’s going to get us killed, and all the while I’m yelling “No!  Jonah, NO!  STOP IT!”  at top volume.  I’m clawing around for my cell phone and I call Andy – thank God he was at the house – to tell him please be outside when we get there, ready to help me.

Then I turn down Euclid, round the pond, and we’re in the home stretch but now he’s really almost out of the restraint, expensive and sturdy as it is.  His seat belt’s still on, but that won’t last once Houdini escapes the harness, and it’s going to happen any second.  Luckily there are cars in front of me but not behind, so I hit the brakes harder than I need to, and it shocks him into just sitting there…but only for about a block.  So I speed up a little and he’s pushed back in his seat, unsettled again by the sudden car motion…but only for about another block.  I hit the brakes again.  Then speed up.  Then hit the brakes.  Then speed up.  In this ridiculous manner, I buck my way home, like someone learning to drive a stick and failing miserably.

The pendulum swings again today, with only two aggressions at school, none at afterschool, and none at home.  Now he’s asleep, and I’m here with my tea to tell the tale of Dr. Jekyll and Mr. Hyde.  Once again I am the grateful recipient of deliberate acts of kindness this week, including two delicious dinners, a box of peanut-buttery Do-si-dos (made all the more awesome because they’re impossible to find this time of year), and a day of almost-aggression-free Jonah.  Thank you.

I’ll take everything I can get.

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thumb: it’s a yummy.

Posted in autism, Wildwood, tagged , , , , on September 20, 2010| 2 Comments »

So Jonah sucks his thumb, and I don’t care.  (Sounds like a song)

Looks like he’s daring me to care, doesn’t it?

A lot of people who have autism do something called stimming….rocking, flapping…some repetitive (no surprise there) body movement that seems to help them self-regulate.  Jonah doesn’t stim a whole lot (though when he was younger he loved to spin), but ever since he was in the womb – even in the ultrasound picture –  he’s sucked his thumb.

I sucked my thumb myself when I was a kid.  I remember how soothing it was, what a wonderful thing to have quite literally at hand…an oral fixation deliciousness with which Freud would’ve had a field day.  If I remember correctly, I sucked my thumb until I was 6 or 7, at least at night.   I don’t remember if my parents deliberately broke me of the habit or if I just gave it up.

Sometimes I watch Jonah suck his thumb and I wonder if I should care whether or not he does it, and for how long.  But there is always something more important to care about.

For instance, I’d rather work on potty training, or getting his negative (swat!) behaviors under control.  I swear I can handle just about any other aspect of his autism with relative aplomb when compared to how I handle (and hate) his hitting.

I hate that he hits.

Hate that he hits.

Hate it.

Did I mention I strongly dislike when Jonah hits?

Sigh.  I have a meeting with his teachers at his new classroom at Wildwood School this week; we’ll talk some and likely brainstorm about this problem.

I am grateful to Jonah’s school, its teachers and staff, its benefactors…its very existence.  Thank you, Wildwood. For so many reasons.  For providing a place where we are welcome, first of all.  Inside your walls we are like everyone else, yet different from one another too, and it’s okay, and it all somehow makes sense.  Thank you, staff, for teaching Jonah, for changing his diapers, for withstanding his swats and hits and kicks and whining and screaming.  Thank you for playing with him and singing with him, for letting him sit in your lap and spill paint on you and splash you with water.  Thank you for giving him a safe environment.  A voice.  A whole bunch of different ways to play, to learn, to grow.  Thank you.

Once a year, there is a Walk for Wildwood.  The walk supports Wildwood Foundation and Wildwood Programs:  Working collaboratively with families and community, Wildwood Programs empowers and enables children and adults with neurologically-based learning disabilities, autism, and other developmental disorders to lead independent, productive and fulfilling lives.

If you can help support the walk, click here.  And thank you!

If not, no problem.  Jonah will suck his thumb in your honor either way.

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