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Posts Tagged ‘Anderson Center for Autism’

once and for (edited) all

Posted in Uncategorized, tagged , , , on June 9, 2014| 9 Comments »

This post is in response to a comment I received on yesterday’s post, and in response to all the silent lurkers asking the same question:

If Jonah is so much better, why not bring him home?

First of all, Jonah does not live in an institution.  He lives in a house with 7 other kids and round the clock caregivers who love him.  He has a regular schedule & routine.  He goes to school on campus with wonderful teachers who nurture and educate him in a way that no one else could.  These people live and breathe autism.  Boo would never, ever have come as far as he has without being at the Anderson Center for Autism for the past three years.

Anderson also has pre-vocational and independence training, with mock apartments and mock work situations depending on each child’s ability.  The children learn to make beds, do laundry, help cook, etc.   The caregivers  take Jonah out in the community and teach him how to behave appropriately in the grocery store, at the movies, bowling, etc.  They have a huge pool on campus and Boo loves to swim.

Jonah is not “fixed.”  They have not cured him of autism.  I called it a “mini” major milestone for a damn good reason.

In fact, just last night Andy called and told me he’d taken him all day (which he does often, whenever he can, because Andy moved just 5 minutes away just to be close to his son)… and that Jonah was “squirrely” — he’d had an aggression just that morning because another kid came in his room and Jonah didn’t want him there.

Jonah ended up attacking a caregiver and pulling some of her hair out.  Now, that’s not a “two-person take-down” – the stuff I’ve been speaking of that has been mitigated to once a month or so — but it is aggression and he still needs to work on that.

I am still afraid to be alone with my son, Andy suggested I add once he read this.  I don’t like to type it but it is true.  Jonah cycles through his behaviors (what I’ve called the pendulum) and at any time he could really hurt someone during an aggression.

Andy also suggested I not answer flamers, so I took a lot of other stuff out.

‘Nuff said.

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what no one knows

Posted in Uncategorized, tagged , , , on May 8, 2014| 4 Comments »

There’s a portion of the autism population hiding in their homes afraid.  I always thought we were the only ones when it was happening to us.  The severe autism groups on Facebook tell their stories, and I have joined them even though my own journey through the aggressions and the helplessness and fear is largely over.

On the other side there is mostly peace for me now, especially nearly 3 years after admitting Jonah to his residential school, because I know my home and my body and my child are safe, that we are getting better, that I have no other children to worry about or care for.

What I never knew is how I was one of the lucky ones…the one who found a great residential school with an opening for my poor Boo, and quickly enough so that I did not completely disappear into despair before it happened.

I want to help these people who are tired, who are so strong but feel broken, who have no idea how or where they are going to find help.  Who buy drive-thru food for their child only for the child to throw it out the window….who clean up smeared shit, and cover up patches of bruises and scratches and bites incurred by their very own Tasmanian devil…who put on masks they don’t want to wear and face judgmental people who have no fucking idea what they are going through.

It’s like Andy DuFrane from The Shawshank Redemption, crawling through 500 yards of foul sewer shit to find the freedom on the other side, only there is no other side and they’re trapped in the sewer.

There are so many places the people in the severe autism group tell about, where their child was sent and abused, or neglected, and so they brought them home again.  There are so many areas of this country that offer no help at all.  The police have no idea what to do and the psych centers won’t take kids who can’t communicate effectively and the psych drugs are a sick, sad game of roulette.

I find myself holding back lest I become a residential school advocate.  I remind myself that just because it worked for us does not mean it is the right path for someone else.  I need to remember all residential schools are not as excellent as The Anderson School for Autism.

I can only comfort, and cheer-lead, and celebrate the joys, and give virtual hugs and love wherever I can.  I can talk about the Anderson School and offer this blog as a written account of the journey to the decision to place him there – particularly 2010-2011.  Read it and weep.  Or learn.  Or judge.  Or laugh.  As I’ve said before, if it helps one person it is worth everything to me.

What no one knows (except those of us who have lived it) is there is a giant portion of the autism population who are desperate for help.  They need that help and they need it NOW.  It all feels so insurmountable.

I’m still on 3 psych meds to get through the day.  I still hate Mother’s Day, because it feels like a fake celebration.  How can I be a good mother when I am not mothering?  As wise a choice as it may have been, what, exactly, is there to celebrate, but my own poor mother, who only wants to love and hold and spoil her only grandchild?

I want to send every one of these autism mothers a card, a gift, some reassurance.  I want to convince someone very very rich to build 10 or 20 or 50 residence schools — fantastic ones — however many it takes so people no longer have to live on the edge, fingernails digging in to the cliff.

As for Jonah, he is well and he has been happy, running around outside on the school’s playground, eating like a horse, his growth spurt starting so he is 5 feet tall now.  He has learned his simple sentences:  “I want cranberry soda please” and, still, the oft-repeated phrases:  “car ride?”  but if he is upset with us now he cries instead of attacks and he requests “quiet time” (usually lying down on the bed with him) instead of bursting forth in lightning-flash anger.

Jonah and grandma

Jonah (with his crackers lined up) and grandma

happily patting the chips

happily patting the chips

...and the cookies

…and the cookies

and a happy car ride

and yet another car ride

I have so much to be grateful for.  I want that for everyone in the group.  Someone needs to pay attention to us.   Not only are we not going away but we are increasing in number.

Here are a bunch of sweet Jonah pictures from our last few visits –  in several of which he is pat-pat-patting the package of crackers or chips or whatever, because he thinks it’s funny – and although we’d like whole chips and crackers, the giggles are worth everything.

My prayer today is a strong and fervent one – that the other parents like us find the help they need and that awareness is increased to the point where we can no longer be ignored or judged or swept under the rug.

Please, God, and thank you.

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a year ago today

Posted in Anderson School, autism, The Anderson School for Autism, tagged , , , , on August 16, 2012| 4 Comments »

A year ago today, Andy and I dressed Jonah in a green “Hi!  My name is Jonah” shirt, drove him to the Anderson Center for Autism, dropped him off, and left him to live and attend school there.

I have a good memory for dates, so this was an easy one to remember – aside from the fact that it’s the day Elvis died (35 years ago today).  I woke up this morning with a strange feeling of dread, as though I were going to have to go through the whole thing all over again.

And yet something saved me from turning into the weepy self-pitying woman I, left unchecked, have the tendency to be.

That something was a boy.  And a box.

Someone on Facebook commented on the Scare Me Nots page (I am their facebook “mommy”) – and when I saw the name, I was compelled to look at their page.  The page is for a little toddler who enjoyed 3 months of health before seizures led to a discovery that his little brain is essentially degenerating – and there is nothing they can do.  I wrote to the boy’s mom and asked for her address so I could send her the Scare Me Not she liked.

Then, last night, I spent hours filling and decorating the box, all sides of the box, with pictures from books and magazines and calendars in my crafting basement.  I used a whole roll of packing tape and carefully adorned the box as though it were a gift in and of itself.  The process distracted me from thinking about how I haven’t had my Boo with me for a year.

This mama may not have her little boy at all for much longer.  There’s nothing like perspective to keep you from self-absorption.

When I got to work with the box in my passenger seat, I felt an urgency to get the box to her for her boy.  So I left work and stood in line when the post office opened, and I mailed it the fastest way I could.   Now I feel like I love her boy as well as my own.  I pray for him as I pray for Boo.  And after I mailed that box, I was no longer so worried, so pained, so obsessed with thinking, wishing, complaining, crying about my own boy — and I let go of holding myself bow-string tight.

Instead I felt humbled, and no longer alone in my sadness.  Pain is pain.  Loss is loss.  Everyone has to have some.  None escape grief and trouble.  We all have crosses to bear, some of them terrible.  Unimaginable.

Yet there is a hope we all must hold, that things will get better, that the light at the end of the tunnel is not an oncoming train but rather a beacon of sunshine.

That on the other side there is beauty — and others – even strangers – who really do care.

“All that matters is what we do for each other.”
  ~ Lewis Carroll

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fearless fred & jonah russ

Posted in Anderson School, autism, behavior, grandma, hospital, snow day, The Anderson School for Autism, Uncategorized, tagged , , , , , , on January 21, 2012| 1 Comment »

It was crappy, very cold, fine-snowy weather when my mom and I left early this morning to meet Andy at his apartment and then collect Jonah.  The kind of weather where if you just avoid the first few hours of driving in it, you’ll be fine.  Well we were the ones on the road during the slippery beginning of the storm.  My mother wanted to drive us down in her car so that’s what we did.

Nothing can stop her from visiting her grandson.  Nothing.

I believe she’d trudge through a blizzard in boots all 90 miles if she had to.  I was laughing to M about how this would be my death day, walking around the house singing “and when I die…and when I’m gone, there’ll be one child gone in this world, to carry on, to carry on…”

“Stop that,” said M.

But we survived the small storm and got our visit with Jonah.  I brought Fearless Fred, one of my Scare-Me-Nots, down with me.  He wanted to serve and protect us on our slippery way – I imagine because he’s not afraid of anything;  he really is aptly named.

Here are some pictures from our adventures today:

First Jonah got his boots and coat off, and jumped on daddy’s bed.  When he’d calmed down enough to sit, I brought in Fearless Fred.

I handed him to Jonah.  Jonah pulled Fearless Fred’s face in to his own and gave him kisses!

Jonah and Fearless Fred, making friends…

Then it was — you guessed it –bath time!

…and more fun with Fearless Fred

Then lunchtime.  (Fearless Fred tries hard to look busy while stealing a wedge of orange with his tail).

Jonah wanted to take Fearless Fred on our snowy walk.

Then Jonah and Daddy started to run ahead, but Fearless Fred didn’t mind so much.  He wanted to play in the snow,

and hang from branches…

and climb twisty vine-embraced trees.

Show off!

I love my boy so much.  I just want to turn the heated blanket up and crawl into bed.  I have all my adopted Scare-Me-Not “kids” to tend to (only someone as kooky as I could pretend to believe that I mother plush monsters).

No, there is work to do.  And I’m fighting the urge to completely abandon reason, geek out, and send a care package to Guster.

Then again, there’s always tomorrow.

So anyway once again I ask you to make Fearless Fred and his friends go viral by LIKING the Scare-Me-Nots’ facebook page.  I am the cartoon Mommy cyclops monster with dual-lensed glasses, who administers the page and occasionally holds contests with cool prizes.

Should I organize a Scare-Me-Not flash mob?

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our other options

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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