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Archive for the ‘placement’ Category

residential educational facility

Posted in Anderson School, autism, behavior, doctor, placement, The Anderson School for Autism, Uncategorized, tagged on December 30, 2011| 4 Comments »

“Jonah lives at a residential educational facility for kids with autism” is how I say it.

Innocent conversation-starter questions at networking events or out in this bad, bad world*:  So Jonah is 9?  Is he in 3rd or4th grade?

I almost always tell the truth, and it sounds like a carefully phrased script constructed to confuse with alliterative, technical-sounding words that hopefully distract the listener while I try to usher the conversation elsewhere. 

Jonah’s at a residential educational facility for kids with autism. 

I’m not trying to be politically correct here, though of course it must seem it.  It’s just that any alternative phrasing feels awful. “Jonah lives an hour and a half away from me, cared for by strangers I have no choice but to trust because his kind of autism comes with behaviors so severe it was unsafe for everybody to keep him at home.”

What else could I say?  “My son’s at a school for kids with autism,” I guess would be okay, but it lacks that alliterative technical-sounding distraction technique and, instead, seems to always invite more questions.

Luckily most folks then let me take us on to “so you went to school for marketing?”

And then, later, I allow myself to wonder what Jonah would be like if he were in 3rd or 4th grade, just a regular kid at a regular school.  Would he still love the water, and celery, and tight hugs and car rides?  Would he be good at different things?  Would we go places and do things together?  Bake and hike and play games?  I get the feeling I’m over-romanticizing regular kids.  You get what you get.  And everybody gets their share of shit.  It’s just sometimes I feel like mine’s smeared all over me.

There are times I don’t talk about because I’m ashamed of them, the times when I forget.  It used to be for a minute, then an hour, then a day.  What I forget is how bad it was, how scared I was all the time, what despair and dread we lived with day after day after God-awful day.   I forget, and then I feel relief, and I tell myself that Jonah is well taken care of and in the best possible place, with his father just 5 minutes away.

I forget, and I am relieved, and I am ashamed.

If I were a born-to-be-a-mother-mother, one of those special people some folks say I am, I’d have found a way to keep him home with me, protected and loved.  No matter what I had to do, no matter how expensive.  No matter if I had to get a second job to pay for a 24-hour personal aide, an autism service dog, a kick-ass nutritionist.  A behavior analyst – Harvard valedictorian, class of 1988.  Some Superdoc who will fix all his violent behavior.

Not everyone should have kids.  It shouldn’t be an expected order of things:  High school.  Then college.  Job.  Engagement.  Marriage.  Buy house.  Have 2.5 kids.  Work until you retire.  Wish you had something to do, wish you still felt important to the world.  I may not understand it fully but I feel it coming, all this being pushed off the planet by the next generation and the generation after that and the generation after that.  Everything starts to confuse you and technology feels exponentially rapid now.

So maybe I shouldn’t have had kids.  The truth is I just really, really wanted some unborn child to have Andy for his/her father.  Unfortunately I was also selfish enough not to realize it probably shouldn’t have been with someone like me.

I don’t mean to sound whiny or crazy.  UGH.  Should I post this mess?

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the two-person takedown

Posted in Anderson School, autism, behavior, grandma, placement, singing, The Anderson School for Autism, Uncategorized, tagged , , on October 19, 2011| 5 Comments »

Yesterday Jonah required a “two-person takedown” at school. 

Whenever there is a “two-person takedown,” they are required to call a parent to explain what happened.  When my cell phone rings at work and I see their area code, my heart always jumps and then sinks, diving down into a numb place before I answer.  I don’t want to hear it.  I don’t want to know it.  I want to be ostrich-mom and I can’t, and I want to believe he doesn’t hurt anyone anymore, but he does.  Not nearly as often as before, they tell me, but I hate it just the same.  For me it is the worst aspect of his autism, by far. 

He was in music class, which I would imagine he’d love.  I don’t know what upset him but he became frenziedly violent.  He was removed from the music class and they attempted to bring him back to his regular classroom, but to no avail.  Hence “the two-person takedown.”

He breaks glasses and hits, scratches and tries to bite.  He fights dirty, no holds barred.  Then they calm him and he gets his proverbial shit together, but it is impossible to say for how long. 

The time bomb ticks.

People ask me how Jonah is doing.  A lot of people.  I appreciate it and their concern means so much to me, but more often than not I ask them to please read my blog.  I know that might sound insulting, or even mean, and I try to explain:  I can’t live this every hour of my life. 

If I tell the same story over and over again, I become depressed and anxious.  If I worry and perseverate on the craziness of it all, I can’t function.  So I set aside blocks of time to tell the tale through writing, which is easier, and better, and usually much more articulate anyway.  I apologize to the people who want to know about Jonah when I just don’t have it in me to talk about it, but I get the feeling they are hurt and insulted anyway.

I hate that I can’t hold my boo in my arms and rock him back and forth, singing to him and calming him.  But he is 9, not 2, and the whole point of the school is to increase independence and learning, so kids are not treated like babies just because their cognitive ability may be low.  I have to admit I would have continued to baby him had he not gone off to school.  I love him more than most people in my life know or understand.  But hearing about his anxiety, his meltdowns, his aggressions – it’s too much sometimes.  I don’t know what he understands and I don’t know what to do most times. 

I trust his teachers and caregivers to nurture and love him, but is that too much of an expectation?

The effect it has had on my mother, and on my relationship with my mother, is significant, to say the least.  Jonah is the only child of an only child, and to my mother he is the sun, moon, and sky.  He is her everything.  It makes me feel like I must compete with her to prove he is my world as well, but it’s so different for me.  For me, there is also deliverance from a life I couldn’t live anymore. 

I believe with my heart this is the best thing for my son. His best opportunity at independence – at freedom from whatever it is inside him causing him distress. At competency in life skills…at learning.  At life.  I assert this a lot in my blog posts, I know.  I have to.  I need it to be true.

But what if I’m wrong?

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jonah’s best chance

Posted in Anderson School, autism, placement, The Anderson School for Autism, tagged , , on October 5, 2011| 4 Comments »

For those of you who don’t read the Capital District Parent Pages, in which I write an article every month (even though it’s undoubtedly the “bummer” of the monthly magazine, surrounded by articles about harvest and hay rides and Halloween fun), here’s my October article.  I wrote it in early September; the deadline is the 10th of the month for the next month’s issue (which means I’m working on November’s article right now):

Normal is a Dryer Setting – October 2011

As I write this, Jonah’s been living at an educational residential facility for children with autism (what they used to call a “home”) for almost a month.  The day we dropped him off and drove away was perhaps more agonizing for us than it was for him.  At least that’s what everyone kept telling me.  At least that’s what I needed to believe.  The last glimpse of my boy’s shirt was the most difficult thing to see; the impulse to run after him was the most difficult thing to fight.

Of course we called that first night to ask how he was.  I wonder if the staff hides the worst of the news when they tell parents what happens after they drop off their child.  “He cried for a little while, but then he was fine,” they say, probably perceiving we don’t really want to know the details anyway.  We’ve played out the details in dozens of different scenarios since the day we found out he’d been admitted.

Honestly, the anticipation of Jonah’s leaving was by far the worst part for me.  The countdown.  Once he was there, I hoped he’d get more comfortable and acclimated every day.  He even talked to me on the phone the day after he’d been admitted; “I love you mommy,” he said. “I miss you.”  I could hear a care worker in the background prompting him, but it was so good to hear his sweet little voice that I just relished the words.  Jonah’s never been a phone kid and, at best, tolerates whatever you’re singing or telling him for maybe six seconds before handing off the receiver.  It’s not like he will hold a conversation anyway.  We’re just now celebrating the fact that he’s starting to say “yes” when he wants to answer in the affirmative instead of merely parroting back what you’re offering him. 

I miss him.  I remember his hugs and kisses, his scent.  I remember how his eyes lit up when he saw a train go by.  I remember chasing him down a path in the woods and letting him throw woodchips and tiny pebbles into the air. Gleeful Jonah.  Unable to bother anyone, and away from all the rules.

I have to remind myself of the bad things.  We couldn’t help him on our own.  He was going to hurt someone, or himself.  Bad.  He’d already kicked his leg through a glass window during a tantrum.  Scratched and bitten and bruised Andy and me, over and over.  Screamed in our ears.  Broke our glasses repeatedly.  Threw plates and spit soda, escaped from his car harness to attack us when either of us was driving alone with him.  Shoved my mom’s TV over, smashing it to pieces.   I have to remember.

Andy or I call every night to see how his day went, and for the first few days Jonah was unsettled, but now he seems to be getting on board with the routine of the place.  His caregivers seem like genuinely caring, invested individuals.  They say he eats very well, works puzzles, smashes clay around, and is fitting in at the house, where his room is blue and he has two windows overlooking the pretty grounds. 

 He likes to take long walks around the entire campus, they tell me, and he adores the playground.  They e-mailed me two pictures of him with big smiles.

He’s been swimming, of course, and has had only a few aggressions (and one dinner-throwing incident). 

So far I’ve been to visit him twice, and as heartbreaking as it is to leave him behind, it is wonderful to look forward to seeing him again the next time.  I trust we’ve done the best thing.  Not for us; for Jonah.  To give him the best chance for independence, growth, wellness, and learning. 

 And, most importantly, for happiness.

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something wonderful

Posted in Anderson School, autism, behavior, placement, singing, Uncategorized, tagged , , , , on September 25, 2011| 4 Comments »

My father and I went down to see Jonah today.  Armed with lunch, a couple of DVDs, a bag of toys and books for Jonah’s house, and one last donation to the upcoming fundraiser gala, dad and I set forth.  We talk easier than ever before, and share stories, and if the talk gets heated, or charged with emotion, it is okay.  It was not always okay, but it is now.  Now my relationship with my father is very good.  We chatted the whole way down and arrived just a few minutes before noon.

And so I give you this week’s “black soda” face, complete with crumb-on-lip:

And, of course, Jonah’s chosen swing:

“Mommy push?”  He asked, grinning.

I think his caregivers and teachers call me mommy, so that’s what he calls me now.  I still slipped and said mama, but I can get behind mommy – it’s a ‘nomenclature graduation’ of sorts.

His school encourages as much independence as possible, and they’re right to do so.  It was too easy for me to continue to talk to him (and treat him) more like a baby than a nine-year-old kid.  At his new school he helps do his own laundry, is almost completely potty trained already, and can attend to tasks in the classroom.  They really seem to like him.  It feels good, especially when they tell me about it.  His teacher wrote to me, in part:

“Jonah’s been doing very well adjusting to the classroom and staff…we all enjoy his presence a great deal. He’s a lot of fun to have in the classroom and VERY bright!  Yesterday was the first day we had some aggression since we’ve been back!!

 When we do group work, most of the time, he sits well and seems to enjoy the lessons. We’re all still learning so much about him and part of that is realizing when he needs to take a break from work.

Although he can sit and work with us for a while, there are times when he will get teary and asks all done work?  So now, we’re trying to figure out when he needs a break before he gets to that point.

When he does get a break, he is always good about coming back to the table and finishing the lesson.

 I can’t stress enough how much we all enjoy having him in the classroom!”

This was great to hear, aside from the aggression;  I enthusiastically forwarded her message to Andy.

I’m glad to know they are trying hard to understand what makes him tick.  I’m so happy when I get to see him — and I kiss, inhale, hug, hold him as tight as he’ll allow it – to carry with me until I can see him again.

It was hot on the playground today.   After we had our lunch at the picnic table, we went to the swing set and had  fun together, Jonah wanting to stay on his favorite swing.  Mommy push.  And push and push and push, higher and higher, singing Guster and pushing, Jonah sailing high in the summer-like sun.  Finally I snuck away to the shade and Pa kept him smiling:

One of his caregivers came out and said the best way to transition him when we leave is to go back inside the house with him.  It sounded reasonable to us, so this time when it was time to go, we said goodbye in Jonah’s room and then a careworker moved in and engaged him as we walked out.  Quickly.  Trying not to look back.

(Ripping the band aid off, as it turns out, was much easier than tearing it bit by bit).

On the drive back, my dad insisted on filling up my gas tank, even though I didn’t really need it yet.  Now that he’s gone and I’m home and it’s hours later, I’m reflecting on him and how, even when I’ve been mad at him, I’ve had to admit he’s a man of integrity.

An earnest, hard-working, genuine man.  A secret-keeper.  History lover.  A man with a work ethic.  A saver.  A man with an inner moral compass always pointing in the right direction – who’d always stop and defend another against hurt or hate.  Proud of his ancestry and family history.  A man who’d help you move and never take a dime for doing it.

A man who believes in giving people a chance and, if need be, a leg up.  He roots for the underdog and wants always to do the right thing.  When he says just try your best, he means it.  I think because he always tried his best.

He always tried.

If I had to pick a song to express him, inasmuch as you can ever encapsulate a person that way, I’d pick “Something Wonderful” from The King and I.

“This is a man who thinks with his heart,
His heart is not always wise.
This is a man who stumbles and falls,
But this is a man who tries.

This is a man you’ll forgive and forgive,
And help protect, as long as you live…

He will not always say
What you would have him say,
But now and then he’ll do
Something
Wonderful.

He has a thousand dreams
That won’t come true,
You know that he believes in them
And that’s enough for you…”

I’m grateful to have such a man as a father, and as a grandfather for my little Boo sweet boy.

I love them both very much.

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the push of the divine

Posted in autism, placement, The Anderson School for Autism, Uncategorized, Wildwood, tagged , , , , , on August 11, 2011| 4 Comments »

I’m at the point where I just want it to be Tuesday.  I want to go, get it over with – to do it instead of dread it.  I’m tired of being sapped of life and joy, breath and motivation.  It’s starting to feel like I’ve chosen this misery.

Today was Jonah’s last day of school at Wildwood. Thank you so much, Wildwood.  No words can express our appreciation that there is such a wonderful school; Jonah was so lucky to be there for 6 years.

I have so much to be grateful for – there are so many people who care.  Yesterday I got a package from a business networking guy I know.  Inside was a card from him and a beautiful hand-crocheted twilight-blue stole from volunteers at his church.  My hands shook as I read his card and the church’s handmade card and message.  Feeling something almost like shame, I clutched the stole and cried into it.

Then, a lady I am in contact with only by phone and e-mail sent me a long letter about how her son has autism too – something I’d never known.  The letter was full of encouraging, positive sentiments and suggestions for Bible verses for me to read.

My friend H continues to generously offer her pool, and friend K gave me hope – and e-mails me SNL skits to make me laugh.  M encourages me with loving words, and today he also e-mailed me a verse:  Jeremiah 29:11:  “For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”  My aunt texts me messages telling me how much she loves me, to call her anytime, that she is praying for me.  New online friends and past acquaintances, family, friends, everyone envelops me in love and light.

Seems like Divinity is yelling at me from all directions:  Have faith!  Have hope!  I’ll take care of everything.  There is no denying the push of the divine – it’s all around me.  I’m grateful for it.  Every morning I wake and cry, my throat so tight I am almost gasping to breathe –and as the day progresses I become calmer.  I can smell the rose and blow out the candle, and there are long moments of peace.

The push of the divine is gentle but firm, like a tight hug.  I am hugging back, hanging on.

A few more pictures:

happy boo

chillin’ in the pool

water boy

…baby boo,

Mama loves you.

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a week and a day

Posted in Anderson School, autism, behavior, placement, Uncategorized, tagged , , , , on August 8, 2011| 2 Comments »

I’ve gone through a time bending worm-hole.  It was six weeks away, and now it is a week and a day.  I will pour myself into work, twice as much as usual, for I’m taking next week off to do this thing and then process it best I can without having to think too much. 

I keep calling it this thing like it doesn’t deserve recognition in any other terms.  My God, I’m going nuts.  Off the charts.  Just mailed the direct care workers at Jonah’s residence letters and pictures and my blog address, cell phone number – as much information as I could muster about my precious, barely-verbal boo. 

Also I sent thank yous – expressions of gratitude for what they do and deal with every day, for choosing to help these children and face injury and shit smears and God knows what else – all for less money than they deserve, undoubtedly – for what they do is priceless.

I hope this week and next week fly by.  I hope I can go far inside my head, into a Novocain-place, into numbness and ennui, even when I must be awake to work & think.  As oxymoronic as it sounds, I want the foundation of my days to be a state of sleep from which I can wake later, later.  Some other time.  Some other place.

I don’t want to live through this.

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the august article

Posted in Anderson School, placement, tagged , , on August 1, 2011| 8 Comments »

I’ve been writing monthly articles in the Capital District Parent Pages for almost a year now and the August column was the hardest one I’ve had to write yet.  How do I say what’s happening?  I edited it about ten thousand times.  The issue came out today.  For those of you who don’t get the Capital District Parent Pages, here’s what I said:

Normal is a Dryer Setting

August 2011

Well, here we go.  Sometime during the week of August 15th, Andy and I will drop Jonah off at an educational residence for children with autism; he’s been accepted in both an appropriate house and classroom there. 

It’s a beautiful campus.  Really. The classrooms are cheerful, the staff is engaged, the kids look happy, and the children’s residences are real houses – immaculate duplex-like homes where Jonah will even have his own room.  There’s a recreation center and a big pool, and Jonah will be able to go out into the community, to movies and restaurants, playgrounds and museums.  He can’t do those things anymore here.  I know in my heart that Andy and I can’t provide the therapies he needs; this is Jonah’s chance to truly thrive.

I must sound like I’m trying to justify our decision, to convince you we’re not throwing our child away.  The truth is I have no idea how to do this thing.  I have to believe Jonah will be protected and happy.  I need to imagine him learning and laughing.  There is no other option if we are to drop him off and drive away.   In the meantime, I cry.  I have nightmares, nagging thoughts of negative scenarios.  My head fully understands the necessity and wisdom of moving him there, but God, my heart.  Each day is another day closer to that inevitable day, and my heart mourns.  I’m grieving for him even though he isn’t yet gone.

I’m going about it all wrong, I know.  What you focus on expands, they say, so I’m going to stay focused on the good stuff – like giggling when Jonah, apropos of nothing, invents a goofy phrase.  Or hearing him shriek with delight when his lithe body hits the surface of the swimming pool.  And chasing him around his bedroom with a towel to wipe away bath bubbles still clinging to his body.  Watching him sleeping, tranquil, his breathing slowed and deep…pressing small kisses into his cheeks…inhaling the little-boy-scent of his tousled hair. 

I‘ll concentrate on shopping for things he needs for his room.  I’m splurging on the best of everything there is – Egyptian cotton sheets and thick, luxurious bath towels in bright, primary colors.  A late-afternoon-sky colored comforter with a floor rug to match.  The softest blanket I could find.  I want him to be comfortable. 

I’m making him photo albums he can’t rip and filling them with pictures of all his relatives, the people and animals he knows, and the places he’s been.  I want him to remember his loves.  I want to be able to explain to him what is happening: mom and dad will be back, and this is a new and exciting place to grow, play, and learn.  I’ll write a social story – something often utilized to explain a concept to kids with autism using short sentences accompanied by pictures. 

Everything changes.  This is a new chapter in a new book.  Maybe even a whole new library.  I’m grateful to everyone who has made places like this available – and so much better than they once were.  I’m grateful to those families who’ve endured tragedies and had the courage to turn them into advocacy for things like access-to-information laws and changing the system for the better, to protect my son and others like him.  I’m grateful I live in a country where services are provided for people with disabilities, and a state in which lawmakers now recognize the importance of ensuring safe educational residences for people who need them.  I’ll never complain about taxes in New York again.

Still, though, it’s all so surreal and unthinkable.  I want to be a parent advocate for other people going through this process.  If I can be a comfort to just one other family, it will help.  The knowledge that you are not alone in something is invaluable; I know I’m buoyed by the parents I’m in contact with who’ve had to do this too.  

As Jonah goes away, I will be visiting him as much as possible, ensuring he is happy and safe, and loving him with more strength than I ever have before.  So goodbye for now, little boo.  Once you are in the hands of a round-the-clock team of specialists, you will bloom into the best boy you can be.  Your mama knows you are bright and silly, fun and eager to learn.  You show ‘em, sweetheart.  They’re going to love you.  I just know it.

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buddha, mary, kurt vonnegut, gandhi, & w.w.

Posted in autism, grandma, placement, tagged , , , , , , , , on July 26, 2011| 3 Comments »

“The seed of suffering in you may be strong, but don’t wait until you have no more suffering before allowing yourself to be happy.”
— Thich Nhat Hanh (The Heart of the Buddha’s Teaching)
 
I am losing a lot, like it or don’t, as P would say.  But I’m tired of myself, tired of carrying on in my grief, so I’m turning (as you may have noticed) to Thich Nhat Hanh, one of my favorite Buddhist monks, for guidance and peace.  I’m turning to the Buddhist view of impermanence – that which says nothing has permanence, that permanence is an illusion we cling to.
 
Well I’m a Buddhist by circumstance, then. Yet I am also many more things: raised Catholic, I still go to Mass on occasion and cling to my roots, finding solace in the ritual of the Mass.  I may be other things I haven’t even discovered yet.  So it goes, to throw in some Vonnegut.  This is my favorite little story about Kurt Vonnegut, taken from Wikipedia:
 
In the mid 1950s, Vonnegut worked very briefly for Sports Illustrated magazine, where he was assigned to write a piece on a racehorse that had jumped a fence and attempted to run away. After staring at the blank piece of paper on his typewriter all morning, he typed, “The horse jumped over the fucking fence,” and left.[17] On the verge of abandoning writing, Vonnegut was offered a teaching job at the University of Iowa Writers’ Workshop. While he was there, Cat’s Cradle became a best-seller, and he began Slaughterhouse-Five, now considered one of the best American novels of the 20th century, appearing on the 100 best lists of Time magazine[18] and the Modern Library.[19]

The lesson I take away from all of this is I can’t abandon life by sitting in my soiled self in the sorrowful, shallow end of the pool.  I have to keep writing because it saves me.  I can come out the other side of this, make myself into someone good, be Jonah’s mother as best I can, be the change I want to see in this world (thanks, Gandhi) instead of complaining about the changes that aren’t happening.  I may moan and rave, cry and bitch, but I’m not going down without a fight.  I am recharged with people all around me, some who don’t even know me.  They care and they tell me so and it helps like they will never know.  I am not alone, I tell myself, mantra-like.  I am not alone.

Mary helps me too.  Yes, that Mary.  The mother of God Mary.  She sure had a difficult child, an only child (it seems) and she lost him too, in many ways, before she really lost him.  She understands. 

  • St. Josemaria Escriva: “Love our Lady. And she will obtain abundant grace to help you conquer in your daily struggle.”  “When you see the storm coming, if you seek safety in that firm refuge which is Mary, there will be no danger of your wavering or going down.”

How can I believe all these things simultaneously? 

“Do I contradict myself?  Very well, then; I contradict myself.  I am large – I contain multitudes.” ~Walt Whitman

(I’m actually quite scrawny, but I think Walt was being metaphorical). 

I am going over to see Jonah-boo tonight, to take him on the “Groundhog Day” tour of his favorite things:  the train, car ride, maybe grandma or a peanut butter roll.  If it is warm enough, swimming and splashing. 

I am looking forward to it, whatever it brings.  I love him so much.

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counting, breathing, bye bye mama

Posted in Anderson School, autism, doctor, placement, swimming, tagged , , , , on July 25, 2011| 7 Comments »

“For things to reveal themselves to us, we need to be ready to abandon our views about them.”
— Thich Nhat Hanh (Being Peace)

Thank you for everyone who voted for me – I seem to be see-sawing back and forth between #20 and #19, and I don’t expect to stay this far up on the list, but I cracked the top 25.  I appreciate your votes, all of you. It’s funny – Elizabeth Moon has a blog on the list (I haven’t looked at it yet) – but she wrote a fantastic book about autism, The Speed of Dark, set slightly in the future, which gave me the idea for the name of my blog; one of her characters said it in the course of a conversation.

So I am relentlessly counting.  Twenty two days – three weeks from tomorrow – we pack up Jonah and all the things they’ve asked us to bring for him, and we drive him away to live at an educational residence for kids with autism.  It’s like a movie I am watching, or a book I forgot what chapter I’m on…a dream I am consciously trying to end.  Sometimes I literally can’t even breathe… I can feel the pressure in my lungs, my heart, my bones, my center.

Tomorrow Andy and I go for our free consultation for divorce mediation.  M is tired of me being miserable and often “snippy” as he calls it.  He helps me watch Jonah 4 times a week and it is wearing on him – he has his own children and he wants time to relax.  My sadness wears on him too; he says I am not the same person I was.  That it true – I am not and never will be again.  It is not his fault that I am a mess.  I wear this like a cloak and I shed the cloak sometimes but then I wrap it around me again.  How many metaphors can I use to describe this kind of helplessness, this form of pain?

Maybe I should be alone.  Maybe I should be done.  The counting won’t stop, this ticking ringing in my ears (I go next Friday for a hearing exam but it won’t stop the clock).  I hold my breath and hold my breath and pray I don’t burst out crying at the gas station or the grocery store.

I try to hold my son tight and he says bye-bye mama, bye-bye mama…

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i will always be your mother

Posted in Anderson School, autism, behavior, placement, swimming, The Anderson School for Autism, Uncategorized on July 19, 2011| 3 Comments »

I don’t consider myself much of a poet, but I wrote some poems for Jonah when he was a baby, when I expected something far different than what my life has become…when I saw a path clearly before me and walked it with something like confidence… 

…when I expected to be sitting in the bleachers now, cheering him on at his little league game.  When I expected to be friends with other mothers whose kids played with and shared activites with Jonah.  When I expected to be able to bring my son to a child’s birthday party and watch him scream with joy as all the candy came pouring out of the piñata, instead of hovering over him as he opened and closed the host’s sliding glass door incessantly. 

Instead of taking him to the park by myself, pretending other parents and kids weren’t staring, wondering, maybe judging, but never approaching us except when some child would ask with curiousity, “Is he a baby?” or “why can’t he talk?” – and me choking on my tears as I tried to explain.

…instead of losing touch with most of my friends because I became a hermit and uncomfortable around (and often unfairly resented) NT families.  And all this before any aggression and violence.   And all that before checking myself into a mental health facility.  And all that before making the decision to take him to live at a residential school.  And all that before ending my marriage. 

Do I sound like I feel sorry for myself?   Sometimes I do.  My therapist even gave me permission last night, so long as I don’t martyr myself or wallow.   In 4 weeks my son will be gone and my legal separation will be taking place.  Doc tells me I have osteoporosis with a lower vertebrae fracture.  I’m waiting on results from two biopsies, can’t keep weight on, have this strange ringing in both my ears, and sleep as much as I possibly can.  (I”m definitely not Darwin’s poster child).  I’m so tired of crying and feeling anxious, missing parties and weddings and picnics I am invited to because I can’t bring myself to go; if anyone asked me anything at all about Jonah, I feel like I’d lose it and ruin all the fun. Plus for me right now there is nothing to celebrate except “I am doing the right thing” with Jonah, so people tell me. 

Some people insist they couldn’t do it, “put their child away.”  You can when you have to.  You can do anything when you have to, I guess.  I know this is just a hill I have to run up and over, but my legs are cramping and I have no breath.  I don’t know what’s on the other side of the hill, and that scares me too.  Weakling, a voice inside me whispers.  Worthless.  You are superflous now.

I’ve revisited my poems from Jonah’s babyhood, and I thought this one strangely prophetic:

I am your mother.

I may hold you clumsily close, my
sharp angles & skinny arms awkward,
but I hold you close anyway.

You find a comfort in my bones
as walls of a former residence;
as familiar pillars echoing womb whispers…
as fetal backdrop for acrobatic feats.

I may sing you nonsense, silly snippets
of all kinds of songs, lazily off-key
but I sing them to you anyway.

You find a diamond in my song
as the voice you heard awash, internal;
as divinity, a speaker in the sky…
as soundtrack to gestation’s miracle.

I may love you with a racing heartbeat
composed of odd & syncopated rhythms,
but I love you with every heartbeat anyway.

You find a living element in my love
as the cycling pulse of ocean tides;
as habitat for emotion magic, undefined…
as something inside you that can never die.

I will always be your mother.

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