Feeds:
Posts
Comments

Posts Tagged ‘autism’

doctors to donuts

Posted in autism, doctor, glaucoma, haircut, singing, Uncategorized, uveitis, tagged , , , , , , , , on June 19, 2013| 7 Comments »

This has been an extraordinarily fantastic day.  My blog is usually so filled with frustration, sadness and despair – but not today.

First, it is a warm, slightly-breezy, summer-calm, bright, quiet, Paul-Newman-eyes-sky June day.

Now take a deep breath for this wondrously lengthy run-on sentence:

Since I no longer work in a building dressed in office clothes in a windowless area where I am isolated at a facing-a-corner desk, under pressure must-make-money selling advertising over the phone, BUT, rather, am now employed as a writer – typing tip tap tip in my hippie skirts and comfy t-shirts, from home, on the couch, for a charity I love, with the TV tuned to “light classical” 1270, all windows open, house clean, food & drink for whenever I feel like eating, Almanzo-kitty and Jack-dog at my side or in the yard, breezes and birds calling me outside where I stretch and break from work to water plants, walk barefoot to the park, garden a little…whatever I want so long as the work gets done, I am grateful because this alone makes every day like a fantasy-dream come true.

I can’t really express how I feel the need to pinch myself each day.  I wake when I want and I don’t have to go anywhere at all.  The work I do feels like painting a picture or making nature art by a stream.  Creation.  It’s a joy for me to write.  And I am unbelievably blessed.

What a deliverance. 

As the shock begins to wear off I am finding myself breathing slower, feeling more relaxed, smiling inside and out.  I sit in meditation easily.  My head and heart are clearer.  I’ve befriended new neighbors and gotten closer to old ones, and when I do not have writing work, I love to spread the word about Modest Needs, the foundation for which I am now director of communications.

But that’s just the groundwork for this awesome day.

Jonah’s caregivers, P and N, drove him up to this “second chance eye doc visit” (after the failed appointment-cut-short exactly a week ago today).  I met them at the van and Jonah came bounding out, smiling wide and with a fresh new hair cut.  We walked around outside and in the lobby for a good 20 minutes before they called P’s cell to tell us to come up and into an examining room.  Usually I underscore every last detail of all this, but today I will simply tell you Jonah was an angel.  A “normal” kid could not possibly have been more cooperative or have amused him/herself any better.  After waiting those 20 minutes downstairs, we waited again from 10:30am (when they called us in to a room) until 11:30am (when the doctor finally came in) and I tell you he was the picture of patience.

He walked in tight circles and we played “high five” and sang songs – everything from “I’ve Been Working on the Railroad” to Guster’s “Keep it Together” to “B-I-N-G-O” to “Bye Bye Blackbird.”  I gave him a green octopus and many white tic-tacs.  He asked for hug and more hug and kiss eye and more kiss, over and over, his repetition sweet music.  I held him tight and kissed his eye, the top of his head, his shoulder…we made a game of it — we made a game of everything — he was happy and giggling, asking for donut? even as I made up a song about him asking for donut.  N and P are incredibly cool and we were able to talk and laugh among ourselves and along with Jonah.  

Donut?  Donut? he asked several dozen times, lest we forget.  He knows the drill: Number one: doctor.  Number two: donut.  Donut?  Donut?  “Yes, Boo, of course!”

He never fell apart, and we checked out and walked back downstairs.  I hugged P and N goodbye before kissing Boo soundly and sending him off to get his beloved donut.

I’m not going to ruin this post with details about Boo’s eye.  Later.  For now, just pictures.  I took several – here are some good ones:

First I opened the door of the van and gave him green octopus

First I opened the door of the van and gave him green octopus

happy boy, waiting in the lobby

Happy boy, waiting in the lobby

walking into the eye doc office

Walking into the eye doc office

...and being a really good boy for his ultrasound! ...and being a really good boy for his ultrasound!

…and being a really good boy for his ultrasound!

It was damn near a miracle.

Today I pray one of my two main prayers (the other is please): 

Thank you.  Thank you.  Thank you!!!

Read Full Post »

no mama

Posted in autism, books, grandma, Uncategorized, tagged , , , , , , , , , , , , , , , on April 22, 2013| 3 Comments »

“If you can’t make it better, you can laugh at it.”
~ Erma Bombeck

There remains inside me, despite every effort to squash its useless purpose, an ugly envy when I see beautiful photos of families – husband, wife, child/children, smiling, caught in a snapshot of happiness.  The knowledge that these parents may tuck their little ones in at night, or cheer them on at sports games, or watch them proudly in the spelling bee.  The realization that they have the opportunity to guide and teach and comfort their kids, to gather together in their own family unit, tucked into time itself with undying memories.

Of course this is foolish, imagining idyllic problem-free lives.  It is never so.  Behind every smile is pain, and in every life falls the rain of sorrow.  Yet I have but one child, too far away from me, and I am unable to guide him anywhere against the wilfulness of autism itself which cages him in its unrelenting grasp.  Jonah’s father is gone from me – and as necessary as it was, it is too often cause for feelings of inadequacy, of failure, of loss.

The mornings are hardest.  Awakenings.  In sleep we are all embraced by the quiet wellspring of a dark, unknown possibility and promise. Saturdays are question marks, when every week my mother and I punctuate the ride to Boo with silent queries and fervent prayers.

When we first picked him up at his residence, he was happy and excited.  The caregivers told us he ate two breakfasts and was behaving well.  He was calm on the ride to Andy’s apartment.

Jonah and his "octopus."

Jonah and his “octopus.”

Just a few days ago I phone-conferenced in to his IEP (individualized educational plan) meeting.  I heard encouraging news about his progression in verbal communication – he is learning to say “I like” and “I see” (etc.) to begin sentences, instead of just “I want.”  He is not yet generalizing this beyond the classroom, but I am confident he will.  They tell me he is most anxious (and therefore likely to aggress) when he is in large crowds or feels encroached upon by someone sitting too close – which is most likely why he only tolerates anyone in backseat for the short duration of the ride to Andy’s apartment.  Often he will ask for daddy in backseat, but I can’t drive Andy’s stick shift and neither can my mom.  I suppose I should learn.  How hard can it be?

They told me he has a rash on his penis which they are treating, and they are beginning to recognize it as a recurring cyclic seasonal thing.  He will have been there for two years in August.

The mind reels.

This last Saturday brought change, as Saturdays often do. He ate lunch on his garbage can perch, and had his bath.

???????????????????????????????

Whereas usually Jonah will ask for mama to ride with daddy to transfer station, instead he held his palm up to me when it was time to go.  No mama, he declared.  Mama stay here.

I smiled weakly and stayed behind, briefly playing with Andy’s landlord’s kids, Manny and Isabella.  They are cute kids, and Andy’s landlord looks like George Clooney:

I call him George

I call him George

Sweet Isabella with Protector Patty, a ScareMeNot.

Sweet Isabella with Protector Patty, a ScareMeNot.

I pulled Andy’s copy of Clan of the Cave Bear off his bookshelf and read a few pages about Brun and Broud, Creb and Ayla, until they all returned.  Jonah came flying in the door, and my mother and Andy said he did not want to come back to the apartment at all.  He wanted park.

We were all glad, since usually he only wants car ride. But once again he wanted no mama.  My mother felt so bad for me.  “Mama is coming too,” she told him.  “No…no,” he answered.  My mother decided to be the one to stay behind anyway, and I brought along some root beer for Jonah to sip in the backseat of the car, as incentive for him to let me come along.  He was not appeased.

OLYMPUS DIGITAL CAMERA

“I hold it,” he declared as soon as he was strapped to his safety harness.  Andy opened the can and poured most of it into a cup, which he gave to me, then he handed Jonah the small can with just a bit of soda inside.

Laughing, Jonah chucked it at us, splattering the dash and control panel of the car’s radio.

sticky mess

sticky mess

I cleaned up while Andy removed Jonah from the car and took off his harness, telling him “You blew it.  No park.  Quiet time.”

looks like an arrest

looks like an arrest

After this we went back inside, where Andy and I got Jonah to lie down on blue bed and each of us lay on either side of him.  He was quiet for a few minutes and then turned to me and held out his little hand.  I kissed his palm.  He lifted his leg out from under the covers and I held his little foot and kissed a toe.  More kiss?  he wanted.  Of course more kiss.  I kissed each toe, his ankle, his fingers…the softest place on his neck.

“I love you,” I  whispered.  “I love you.”

And then it was time for my mother and me to drive home.

Yesterday Andy asked me to play an online Texas Hold’em poker tournament he had won an entry into but could not play (actually he’d had to place high in several tournaments to get into this one).  There were 750 people in the tournament and nine prizes, the top prize being either $2,000 or an entry into the World Series of Poker in Las Vegas (which usually carries a 10k entry fee).  After two hours of playing I came in 6th place and won a whopping $40.  I do like to play and am fairly good at it.  It was a fun distraction to my weekend.

The world events of this past week are a shadow-cloud over my microcosmic thoughts.  Too much too much.  My therapist tells me not to listen, but it is impossible not to hear.  While I was sitting on the steps outside his office the day before, reading and waiting for my appointment, a blonde woman with a gold cross necklace asked if I minded if she set her coffee cup down.  I told her it was not my building and even if it was, of course she could.  We chatted a bit as she pulled out a cigarette and lit it, telling me things about herself – she was from NYC.  She didn’t like Albany.  She had been mugged twice.  A man from the Troy Record newspaper approached us to do a “man on the street” interview about the Boston marathon explosions.  I politely declined, but the woman was all excited to talk and have her picture taken for the paper.

“It’s those damn Moos-lums,” she declared.  “We have to ship them all back to their own country.  (And what country would that be? I thought to myself).  “It’s going to keep happening,” she added with certainly, pointing her cigarette at the dark-coffee-skinned interviewer.  He grew visibly uncomfortable and told her he could not use her comment about the Muslims.  She was unhappy about this, accusing him of being part of the liberal media agenda.  When she walked away, he and I talked for a bit.  I could tell he wanted to interview me instead, and again I declined, saying “I think it’s sad that the only time we seem able to be able to come together in solidarity is when there is terrorism or disaster.”  He nodded in understanding, and I stood up and went inside.

Boston.  Texas.  Seattle.  Denver.  China.  India. Japan…North Korea…etc. etc. etc.  The suffering is everywhere now, every day.  If nothing else, it helps remove the envy I spoke about at the beginning of this post, replacing it with gratitude and sympathy.  God help us all.

“One way or another, this darkness got to give.”  ~The Grateful Dead

Read Full Post »

in the middle in the middle in the middle

Posted in autism, behavior, grandma, Uncategorized, tagged , , , , , , , on April 15, 2013| 2 Comments »

“Never be afraid to trust an unknown future to a known God.”
~ Corrie Ten Boom

On Saturday Boo was his reliable, predictable self, and yet he never ceases to amaze me.  Andy had taken him overnight and so he was there when we arrived.  He had been asking for “grandma” and “mama” all morning, yet when we arrived he was more interested in the food my mother had brought him.  This time she’d added a new item:  a small container of mini-Oreos.  Jonah’s not the type to eat things in what others might consider a “logical order” – food, then dessert.  His banquet must be presented all at once, and though he did eat most of his sandwich, the Oreos were a big attraction.

Jonah enjoys the stuff in the middle — the meat and cheese inside the bread, his fingers first tap-tap-tapping against the sandwich and then, usually, discarding the bread altogether to get to whatever is the middle.  It was no different with the Oreos.  He held each mini Oreo carefully in his little hands and pulled it apart, scraping the creamy white stuffing out of the middle, then discarding the two outer cookie pieces.

cookie fun

cookie fun

He gleefully attacked his lunch with fervor.

cookie mouth

cookie mouth
YAY!

YAY!

We are waiting for warmer weather but offered to take him to the park anyway, or the train, or the Poet’s Walk.  When we asked him if he wanted to do any of these things he answered “no,” sweetly but firmly, to each one.  “Transfer station?” he asked, which is a recycling facility where Andy takes his paper and cans, etc. every Saturday.  It is car ride Jonah wants, and he almost always says “grandma stay here.”  I think it’s because he wants the whole backseat to himself.  So my poor mother is stuck watching QVC and Fox News on Andy’s TV until we return for a bath and then another request for car ride.

I found out about an open swimming program at Bard College on the weekends, but Andy seems reluctant to take him, lest he throw a fit.  I want to try, though.  Perhaps M will come down with me some Sunday and we can take him.  Jonah loves the water so much!  I was ready to book a 3-night stay in Cape Cod this summer, to take him to the ocean with Andy, to watch him frolic in the waves, to hear his little voice cry gleefully for ocean!  It is a word we do not use, for if we cannot take him it would be mean to plant the idea in his head.  Now it looks like I may be hard-pressed to take him at all.  I will find a way, for I am a determined mom and want to give the gift of ocean to my Boo.

I would like to end this post with some quotes and passages upon which I have been reflecting.  There are discoveries to make, and self-improvements to make, and faith to build.  There is self-awareness and I am attempting to step away from myself and see myself as others see me.  I am looking deep into a metaphorical mirror to ensure I can remain true to myself and to everything I have ever wanted to be…a great mother, a loyal friend, a good person.  Most of all I am seeking to be kind to all I encounter, to forgive, to understand (and not only to be understood),  as in the prayer of St. Francis, perhaps my favorite prayer/hymn.  I am praying it with everything inside me and turning things over to the certain God in which I believe.

Lord, make me an instrument of your peace.
Where there is hatred, let me sow love;
where there is injury,pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
and where there is sadness, joy.

Oh Master, grant that I may not so much seek
to be consoled as to console;
to be understood as to understand;
to be loved as to love.
For it is in giving that we receive;
it is in pardoning that we are pardoned;
and it is in dying that we are born to eternal life. Amen.

– – –

“Experience: that most brutal of teachers. But you learn, my God do you learn.”

~C. S. Lewis

– – –

Matthew 5:44-45 says, “But I tell you: Love your enemies and pray for those who persecute you, that you may be sons of your Father in heaven. He causes his sun to rise on the evil and the good, and sends rain on the righteous and the unrighteous.”  Thus, now go on your knees and pray for the person who has hurt you.
– – –

“To enjoy good health, to bring true happiness to one’s family, to bring peace to all, one must first discipline and control one’s own mind. If a man can control his mind he can find the way to Enlightenment, and all wisdom and virtue will naturally come to him.”

~ Buddha

– – –

“Silence is one of the great arts of conversation.”

~ Marcus Tullius Cicero

– – –

“To thine own self be true,
and it shall follow, as the night the day,
thou canst not then be false to any man.”

~Shakespeare

Read Full Post »

not really, nietzsche

Posted in Anderson School, autism, behavior, doctor, grandma, placement, The Anderson School for Autism, Uncategorized, tagged , , , on March 5, 2013| 5 Comments »

“Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.”
~ Albert Einstein

Okay so I promise to not quote any more Nietzsche in rash moments of angst.

I’ve just come to the conclusion that if I want to get to the bottom of my son’s aggressions I’m going to have to do it myself.  Should that have been exceedingly obvious to me a long time ago?  Here I am waiting for the professionals to put all the pieces together.

For years, the schools have tried to chart his behaviors, to associate actions with causes, to figure out why he acts out and when – sometimes, even, he aggresses right after he has just been given a reinforcer (reward) or is in the midst of a preferred activity.  And he’s gotten worse.  And he’s getting older – he’ll be 11 on Thursday.  Now he’s figured out that he has an arsenal of weaponry at hand 24/7: a built-in play-doh factory of crap to sling and smear.  All of this everything that makes no sense HAS to make sense to somebody.  I just have to find this person, these people, the neurologist somewhere who will discover a medical, fix-able reason for all of it.  Or do I?

There has to be a reason. Or does there?  I know autism itself doesn’t really make a lot of sense, but there is usually consistency within its world.  Or is there?  I’m questioning everything I think I know.   I need to figure out where to start, to really start helping my son.  If I can help.

Always I secretly judged the autism parents who flew their kids to doctors all over the country, searching for an answer.  I assumed they wanted to “fix” their child or “cure” them of autism.  Maybe they are just like me.

When Jonah was at a day school for kids with autism, I secretly judged the parents who “shipped their kids off” to residential facilities because they “didn’t feel like” taking care of the child anymore.  Now Jonah is at a residential facility.  And of course before I had a child, I had a million notions of parenting that were better than yours. 

God does hath a sense of humor.

Now I have to do something or go crazy with the merry go round of hope and despair.  I want to help my son.

This past Saturday, Jonah was pretty good:  he only slapped me in the face once with a soapy backhand and, minutes later, got out of the tub and ran dripping to grab at my mother, who was sitting in the kitchen.  No real harm done in either case, and neither incident lasted very long.  Of course, we couldn’t figure out a reason for any of it.  We rarely can.

Here are some pictures from Saturday.  And a video.  I welcome all comments.  Suggestions.  Judgement.  I’m evidently working off some karma.

Jonah and his birthday present Scare-Me-Not, Fearless Fred

Jonah and an early birthday present Scare-Me-Not, Fearless Fred.  Boo will be 11 on March 7th.

I love the top of his hair in this picture!

I love the top of his hair in this picture!

Jonah’s wisdom at the end:  More brownie?

Read Full Post »

97X. Bam!

Posted in behavior, echolalia, grandma, language, Uncategorized, tagged , , on November 23, 2012| 2 Comments »

Raymond:  97X. Bam!  The future of rock ‘n’ roll.   
97X. Bam!  The future of rock ‘n’ roll.  
97X, Bam!  The future of rock ‘n’ roll.

~ Raymond Babbitt in Rainman

Oh, my sweet, precious little boy.  What a wonder you are!

This is the third Thanksgiving I’ve described in this blog.  Hard to believe..  The first was awful – so awful, in fact, that just days later I would check myself into a mental health facility, the second was fun (and was paired with two Guster shows, so how could one go wrong?), and yesterday, Thanksgiving 2012, which was easy-wonderful.

Andy was nice enough to drive Jonah up to Grandma’s house, and I met them there.  My boo came crashing through the front door, shrieking with happiness.  We ate turkey sandwiches; Jonah ate one and a hot dog as well, and chips, and bacon, and “white ice cream.”  He asked for train and we drove him there even though we knew Thanksgiving trains are few and far between.  All the way there my mom sat in the backseat with Jonah, but he kept asking mama in the backseat?  And my mother told him, “yes, sweetheart, as soon as we stop for the train.”  It made me feel good; usually he wants grandma in the backseat.

He also wanted music, and daddy turned up this station that he and Jonah enjoy: 92.3 FLY.  After one of the songs they announced the call station with snazzy-jingle-music and the deep voice and all.  Jonah immediately parroted it, really well, too, if I don’t say so myself.  92.3 – WFLY!  92.3 – WFLY!  92.3 – WFLY!  None of us could help laughing, which only encouraged him.  Giggling, he kept at it for a while, just like Rainman.

So there was no train, but I got to sit in the backseat with my Boo – and instead of telling me move (which means get as far away from me as possible and do not even look at me), he asked for hugs.  Over and over again he wanted hugs.  Bear hugs, he even said.  And so I reveled in this, moved close to him, wrapped my arms around him, and hugged tight, raining kisses on his Beatle-length hair.  More bear hug?  he pleaded, looking up at me sweetly.  Yes, Boo, I replied, hugging him closer, tighter, until it felt like we were one.  Oh thank you, I said silently.  Thank you.

And this week I get to see him again – tomorrow, which I hope will be as beautiful as today – and Jonah as lovey.

daddy-hugs

Before Andy and Jonah left, they came inside to get their share of a Thanksgiving dinner my mom had made just for the few of us.  So she had a bag with all their food in it, and Jonah and Andy were saying goodbye, when Jonah opened the freezer, snagged the rest of the bacon, put it into the bag of food, then looked up at us all as if to say “k, let’s go.”  Of course grandma let him take the bacon.

Mom and I had coffee afterwards and laughed at Boo’s adorable little ways.  We both had tears behind our laughter, but they were mostly good, happy, thankful tears.

We’ve plenty to give thanks for, that’s for sure.

Read Full Post »

the dreaded area code

Posted in Anderson School, autism, behavior, The Anderson School for Autism, tagged , , , on April 18, 2012| Leave a Comment »

I’m at work and my cell phone rings.  (If it’s the area code where Jonah lives now, my heart goes into my throat, even though they’re usually “only” calling to notify me, as they must, that Jonah was involved in an incident.  That means he probably scratched, bit, kicked, and pulled God knows how many people’s hair.  It means they had to physically restrain him to prevent him from hurting himself or others).

It is the area code, and they are calling me to relate an incident.  When we hang up I call Andy and tell myself to just go back to work.  There isn’t anything I can do.

For years, behaviorists and teachers, psychiatrists, Andy, me – everyone – has been searching for a pattern to Jonah’s aggressions, a cause.  A reason for all this.  It isn’t who he is, the violent kid trying to scratch your eyes out.  It isn’t who he is.  It is as frustrating as anything I’ve ever known.  I don’t want to think about it today.  I want to know my son without having to fear him as well.  Thank God the world is catching on and more & more is being done for people with autism.

They say Jonah loves the new temporary house.  He can see the river and the railroad tracks, and right there you’ve got two of his favorite things:  water and train.

Jonah, at the glaucoma appointment, wearing J's sunglasses, playing it cool

I’m taking a couple days to go offline and see Guster (again) for my last concert this tour.  If I’m lucky, the dreaded area code will not appear on my cell phone until I return.  Be well, Boo.  Your mama loves you.

Read Full Post »

july 30th

Posted in autism, grandma, singing, singing, Uncategorized, tagged , , , , , , , , , , , , , , on December 26, 2011| 3 Comments »

On Christmas Eve I went with M to return a fixed computer to a man’s apartment; the guy had autism and softhearted M had done the work for free.  The man had all these vinyl albums hung on the walls, and each album had a painting or design on it.  In another room he’d constructed 3-D sculptures from popsicle sticks and fuzzy dots and crafty pieces of all kinds of things.

It was all very cool.  He had so many books and so much music.  Joseph Heller and J. R. R. Tolkien, Mario Puzo and Thomas Hardy.  His music was eclectic:  Eric Clapton, The Beach Boys, Gordon Lightfoot, the Soundtrack to Grease.   And he was very happy to have his computer back in time for Christmas.

He would ask random questions of us, and he could make good conversation.  I asked him if he had brothers and sisters, and then he asked me.  M and he were both the youngest, they discovered.  I  asked him about his music and books, and the artwork all over.  “Oh, yeah,” he said enthusiastically.

“Were you born on July 30th?” he asked me.  “1969,” he added:  statement, not question.

I smiled.  “No, but close.  September 2nd.  The 1969 part is right.”  Then I asked, “When is your birthday?”

As if thinking weren’t you listening? – he said “July 30th, 1969!”

I liked him.

While we were there his mother called.  Then he said his counselor was due to come over soon, so I asked him directly, “are we all done or do you need any more help?”

“Oh, yeah,” he said in the same enthusiastic voice.  “We’re all done.”

Good thing I’ve read The Speed of Dark by Elizabeth Moon, because I don’t have a lot of experience with adults who have autism, and that book helped me see things through his eyes.  You have to be pretty direct; subtleties and metaphors get lost.

That sounds like a Paul Simon song:  Subtleties and Metaphors.

Andy brought Jonah up to my mom’s house on Christmas Day and then kept him for a long time after that.  Jonah was very good at my mom’s, even though he paced a lot and wanted sandwich and bath and car ride in rapid succession, caring nothing for the presents.  He is indifferent to everything related to Christmas except perhaps the lights and songs.

Definitely the lights and songs.

I am kind of okay, but for a while I couldn’t write because I was re-visiting the necessity, safety and camaraderie of last year mid-December, when everything changed forever.   I love those peeps, even if I did only know them (in person) for 8 days.

Thank you to everyone who has written.  I just don’t get to my e-mail as much as I want to.  I read them but then I can’t reply.  I hate bitching about shit, and I’m always bitching about shit.  Today my mom and I spent hours sorting through like 15 bags of clothing into donation and keep piles for Jonah.  I was agitated and tired.

I wanted to clean today.  I cleaned and cleaned and organized and cleaned.  There is still too much.  I keep thinking of the man who was born on July 30, 1969.

It occurs to me that we are equidistant from Woodstock.

Read Full Post »

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.

Read Full Post »

lessons and blessings

Posted in Uncategorized, tagged , , , , , , , , on August 21, 2011| 8 Comments »

It’s been almost 6 days since I have seen my boo.  I’ve learned a lot of things in those 6 days – a quick, hard, University of Life experience I never applied for and didn’t want to attend.

In 6 days God created the world, they say.  Well, I did too, in a way.  A new world for me.  And a new world for boo.

My world is now near-free of dread.  I don’t mean the “damn, tomorrow is Monday and I have to go to work” dread.  I mean the dread that lives inside you and owns you.  The kind that makes you steel-stiff & come unglued – the kind that’s unrelenting, ubiquitous – there all at once, all the time, even in your dreams, for whatever the reason. ‘Capital D’ Dread.  It’s gone.  I am not going to randomly show up at work with scratches on my arms & face and I am not going to trudge into LensCrafters again and again with broken glasses to have them repaired by S, who I’ve seen so many times we are almost-friends.  She told me she uses my story at work as an example of what their optional “protection plan” can be like, and for whom it can be downright necessary.

And of, course, no more dread of Jonah going away – of counting weeks, days, clinging to him even as he tries to bite or hit me, longing to keep him at our side.  That dread is gone too, and it’ feels like setting down a load of bricks I’ve been carrying, sharp and hot in the summer sun.

From what Anderson School has told me, Jonah is acclimating well and more quickly than expected.  He adores their playground, their pool, and all his caregivers.  They e-mail, talk to us on the phone, send pictures (here’s another one),

and communicate with compassion and understanding, even though you know their days have to be difficult and tiring at best.  Some have told me how they have already grown to like him a lot.  I am grateful.  How happy he looks in the pictures they send!

And all this support, from everywhere – people I know, people who read my blog, teachers and friends, co-workers and relatives — it is overwhelming and humbling.

A mystery person even left flowers for me and a bottle of water for the flowers on top of my air conditioner outside the apartment:

That was pretty cool.

I miss my boo, but I know I have made it over the mountain.  Jonah will too.  And Andy. I know it.  I feel very blessed.

If I were asked to give advice based on other things I’ve learned quick & hard, I would say:

1) Don’t get all mercenary and clingy with possessions, money, or anything else.  Watch “The Gods Must Be Crazy” (even if you’ve seen it before) and it will remind you why.

2) Everything is impermanent.  True story.

3) Judgment of others is wasteful arrogance, and the judgment almost never assesses its target correctly.

4) Kindness is never a mistake.  When in doubt, be kind.  Choose it every time and you will never be wrong.  Do kindness.  Not just when the opportunity crosses your path.  Practice conscious kindness.  It comes back to you.  Trust me.  In amazing, incredible, miraculous ways -often when you least expect it and most need it.

5) Calm the hell down when driving, running, working, going shopping, dealing with children, people you like and dislike.  Just calm the hell down.  Breathe deeply.  For God’s sake, breathe.

6)  Love.  Love as much and as hard and as completely as you can.  If you have lost someone and still care for them, love them anyway – even if they’ll never know it.  Love the seasons, the cold and the rain as well as the sun and the warmth.  Help someone.  Do something.  Care!  Don’t watch the news and shake your head and say that’s too bad.  Find ways to make a difference, even if it’s just to one person.

Before I get carried away, and I suppose I could type all day, I want to say I have not conquered these lessons – only that I believe them to be true and my goal is to follow them, as much as possible, from now on.

Oh – and one from my dad:

Before you say something to someone, ask yourself if it is true and if it will benefit the other person in any positive way.  If not, don’t say it.

That’s a good one, dad.

My father’s doing volunteer work now; he drives people to the food pantry in a van, which makes me prouder of him than anything else he could do.  He also is letting me live my life and make my own decisions, something which must be difficult for him, because he loves me and doesn’t want to see me hurt.  He has had to trust my smarts and my own judgment, and he’s doing it all while still remaining supportive.

My mom is counting the minutes til we go see her precious grandson – I think we’ll go for a picnic next Saturday with him if it is nice, and Jonah can play on the playground.   She has been an enormous support, especially for Andy, when no one else was.  She has opened her home to Jonah (and whomever is watching him) over and over and over again, withstood a broken TV and other household items, scratches, tantrums, bathwater splashed everywhere, and toys scattered about.  She is a true testament to the love between a grandmother and her grandson.

Andy is proving both courageous and Superdad by moving so close to Jonah, so he can see him (and oversee him) as much as possible.  Although we are separating, I will never choose to remember the bad things.  Only the good – his kind heart and earnest, helpful spirit that always, unfailingly, reaches out to others when they need anything at all.  Here is a man who, quite literally, would give you the shirt off his back, and I will always love him.

I don’t know how this turned into an awards ceremony but if I am going to spend paragraphs giving mom, dad, and Andy kudos, then I certainly cannot forget M – the manwho took so many days off work to be there, with or for me, time and time again…the man who slept between Jonah and me on a cold hard floor at a psychiatric center for three nights just to protect me…the man who drove 40 minutes to visit me every day at yet another psychiatric center, bringing colorfully beautiful flowers when I’d gone suicidal…the man who came with me several times a week for months to help me watch Jonah, taking on the tantrums and scratches and screams of a child not his own…  The one I go places with, read to, watch movies and take long rides and visit the Almanzo Wilder Farm with.

Here are some pictures from when we visited the farm one day this week, just for respite, traveling slowly through the Adirondacks until stepping reverently over the threshold of Laura‘s husband’s childhood home (yes, I am that into them):

Me, grinning under the historical sign

This massive tree is thought to be 200 years old.  Almanzo climbed it!

…and his home, restored.

I have a dozen or more pictures but I mustn’t forget that I can always start a Laura Ingalls Wilder blog and ramble on about her there.

It was a peaceful, pleasant day. Some weird part of me feels like this week off work is over and so not only will I be going back to work but to the Jonah routine too.  This has not really hit me quite yet, I think.  And there are definitely two sides to this coin – loss/pain and relief/freedom.  I hadn’t even thought about the second side, really, in a positive way, but my therapist has helped me with perspective, so finally there is very little associated guilt, which I was full of…thoughts like “I shouldn’t be having a good time since I sent my boy to live in a home.”  No.  We should all be having a good life.  We all deserve to be happy.  Jonah too.  Jonah especially!

Please continue to send good energies and prayers to my little Boo.   (I can’t wait to hug him)!

And once again, my prayer is simply thank you.

Read Full Post »

mangled – the perfect storm

Posted in autism, behavior, Uncategorized, tagged , , , , , , on November 23, 2010| 7 Comments »

It’s 7am and Jonah’s already attacked me – he asked for “train-a” (he’s been putting an “uh” sound on the end of a lot of his words lately) so I told him it was a school day but we could go to see the train after school.  This is a pretty standard conversation in our house so I didn’t expect it when he tore at my face, scratching me near the corner of my eye and mangling my glasses.  For the second time since I bought them on October 23rd, I’ll be at Lenscrafters today to get the glasses fixed.   I think I’m going to be their best customer.  Now the almost-brand-new glasses are really mangled – no matter how I try to push and pull them back into shape they sit crooked on my face.  I look and feel like a broken doll.

It’s “special persons day” at Jonah’s school which means both my mother and father will be there, and Jonah’s classroom is preparing a special Thanksgiving feast; I pray to God and little baby Jason that Jonah’s a good boy, at least for most of the time.

This past weekend Andy took care of Jonah (with help from my mom) while I went to NYC for an adoption conference for work.  Because I am adopted I especially enjoy talking to the prospective adoptive parents, agencies, and attorneys – I was an exhibitor at the conference because we facilitate adoption advertising, and because I did not have Jonah for a day and a half I enjoyed the guilty pleasure of freedom.  In addition to manning an exhibitor table, I was on a panel of parents who spoke about “raising a challenging child.”

All the other parents on the panel had adopted special needs kids – the kids had separation trauma, fetal alcohol syndrome, bipolar disorder, you name it.  One couple had actually adopted 15 kids (!), 3 of which they had to place in a home because of violent or out of control behaviors.  Jonah’s all I’ve got, and to place him is something so hard to comprehend that I’m wild to try everything/anything else we can, as quickly as we can, to seek another way.

Would I have deliberately adopted a special needs child?  My first reaction is to say hell no, but when I was pregnant I told God (naive little big-bellied me) that He could give me a disabled child or a gay child, that I would be okay with either.

My running joke now is that Jonah is probably both disabled and gay.

Someone I met on an autism group on Linked In sent me an obviously self-published book they wrote about their “journey home from autism” – and a children’s book they’d written as well.  Very kind, to send me the books for free, and I haven’t read them yet, but I’m going to use this as an opportunity to bitch that I’m tired of the whole Jenny McCarthy “you too can rescue your child from autism” schtick.    Most of the time I think these “rescued” children were mis-diagnosed in the first place.  I believe that 50 years from now it will be apparent that what we now call “the autism spectrum” is actually about 10 different things.  Jonah was unquestionably born with autism- our family physician noticed issues before he’d even had his first immunization, and in hindsight I can easily see how he was very different from neurotypical babies.  How can that be the same thing as the child who develops normally for however many months, gets a shot, and suddenly “falls off the planet,” losing all his or her social, verbal, and other developmental accomplishments?  It can’t. The symptoms might mimic each other but the underlying cause and condition isn’t the same.

If anyone had figured out a real, viable way to “rescue” these kids from autism, we’d all be on that fucking bandwagon, trust me.  But what works for one child doesn’t work for another, and the “here’s our amazing story of how we  pulled our precious child out of the bowels of the hell that is autism” books are a dime a dozen nowadays.  You can’t throw a stone at a bookstore without hitting something written by people who want to share the inspirational tale of tirelessly helping their child become “normal” again.

The parents of kids with autism don’t need to feel guilty about what the Superparents accomplished that for some unknown reason the rest of us haven’t been able to.  Since the market is flooded with these Superparent success stories, I think what parents need is for someone to write: this sucks, and I don’t know what to do either, and I’m trying hard, and I’m afraid, and I understand, and I’m in the same boat, in the same perfect storm.  I’m drowning too.

I understand.  I’m drowning too.

Read Full Post »

« Newer Posts - Older Posts »