Tag Archives: Parenting

M

Posted on July 6, 2010 by | 1 comment

I took Emma whitewater rafting today, while Ariane attended a seminar. Emma asked me to go rafting a few days ago, so I booked it for today and we slathered on the sunscreen. We went rafting last summer, all four of us, with Nic and Emma riding in the front of the raft, getting soaked and laughing like crazy. Nic was attending day camp today, so he didn’t join us. Just me and Em.

I assumed that Emma would want to ride in the front again and asked the guide to accommodate us (and perhaps prevent a meltdown if she was denied her preferred seat selection). The guide said sure, but when we climbed in the raft Emma wanted to ride in the middle instead. I was surprised and a little disheartened to be honest, thinking she had lost her gung-ho enthusiasm.

It was a gorgeous, crystal clear, blue-sky day. The river was running fast with lots of great rapids. Emma sat in the middle of the seat in the middle row. I was behind her to the left, the guide in the stern to her right. In the formerly coveted front row was a mother and father and their daughter Sydney, who looked about three years younger than Emma, but who of course, was talking like she was three years older. They were all laughing and screaming and squealing as they got soaked to the bone in the 40˚ mountain-fed water — acting pretty much like Emma and Nic and Ariane and I did when we rode together last summer.

Emma sat silently for most of the hour long ride, looking around, or maybe not looking around at all. Maybe just staring off in space. It’s hard to tell. I tried to get her more engaged and excited by alerting her to upcoming waves and waterfalls, whooping it up. She seemed to get slightly more jazzed, but not enough to laugh or scream like she would on a carnival ride, or like she did in our last raft ride. I got a little bummed but then I thought about how much Nic’s and Ariane’s company means to her — how much she laughs when we all play together.

“She misses Nic,” I thought. “Misses mommy too.”

It made enough sense that I stopped worrying about her autistic detachment and just enjoyed the ride, which was about as perfect as a raft ride could be. When we hit a calmer stretch, Emma started singing and grabbed the strap they gave her to hold, leaning way back until her head was resting on the seat next to me, whereupon I tickled her chin and elicited those squeals I wanted to hear. This was repeated many more times between the rapids.

I asked, “Are you having a good time Em?”

She replied, “Yeah,” with a smile as convincing as the eager tone of her voice.

“Me too Em,” I said, smiling back at her.

I noticed how much I’d been calling her ‘Em’ lately, instead of Emma. For some reason, the thought popped into my head that Em should be her stage name when she becomes a huge rock star a few miles further downstream. Then I thought ‘M’ would be even better, out-abbreviating Madonna and Cher and other one-named divas — assuring her charismatic status with a single letter. I pictured what the T-shirt ‘M’ logo would look like – maybe a graceful art nouveau scroll – then I got concerned that Bette Midler, ‘The Divine Miss M’ might claim trademark infringement.

SPLASH! My daydreaming came to an abrupt end as I got soaked head-to-toe by a big wave that blasted over the side. Emma sat upright, placid and unconcerned in her self-selected (and very dry) seat in the middle of the boat. “Em, you’re not even wet!” I laughed and the guide laughed too.

“Yeah, looks like she picked the right seat after all,” he added.

Mmm hmm. I guess she did.

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Posted in Aspen, Autism, Parenting, Siblings

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Zurcher’s Folly

Posted on July 5, 2010 by | 3 comments

Yesterday I asked Emma, “Do you want to go to the indoor pool?”

To my surprise she answered, “No.”

“Do you want to go for a walk?” I asked.

She said nothing, which could mean she wanted to or it also might mean she didn’t.  It could go either way.

I needed to be more specific.  “Do you want to go to the cabin?”

“Yes!” She replied.  She ran into the mudroom and grabbed a leash, which she attached to my shorts.  There is a history (as there is with almost everything she does) to the leash.  When she was a toddler, she became absolutely terrified of dogs, all dogs.  We would explain to her that the dogs wouldn’t hurt her and anyway they would be on a leash.  The only way she could be convinced to go on a hike was if she could hold the leash.  Over time that led to putting me on a leash and now it is a given that the dogs run freely, but I am on a leash that Emma holds and occasionally tugs on if I am not going quickly enough or conversely, am going too quickly to force me to slow down.  In any event, it works.

Off to the cabin we went, the dogs racing around fighting over various sticks they found along the way and Emma and I leashed together.

The cabin, one room, no hot water, no electricity, a wood burning stove and fireplace, was nick named “Zurcher’s Folly”.  My immediate family built it log by log and at the time, my father, in particular wondered if it would sit unused.   In the 1970’s the ranch had no houses on it, just fields, shrub, irrigation ditches some beaver dams, herds of elk roamed through each winter, bears and coyote took over in the summer.   The only structures were a barn and the ranch house at the edge of the property where a revolving door of people lived in return for taking care of the irrigation ditches, sometimes boarding horses on the land.

Since the cabin was built various family members have slept in it.  During a brief break between colleges I even lived in it for four months, packing my food and water in, sitting out on the deck looking out onto the Rockies and contemplated life.  The cabin has always held a special place in my heart, a place my family built with their own hands and hard work, a place of solitude, removed from everything else.  Unless an airplane flew overhead one would not know what year it was.  We go out to the cabin at least once every time we come to Aspen.  A pilgrimage of sorts, it is a reminder of what is important in life and what we all love about being in this part of the world.

My two children have been going out to the cabin ever since they were born.  So it was with a certain degree of excitement that Emma and I made our way through the grass and fallen trees before rounding the bend and caught our first glimpse of the cabin’s roof.

Emma immediately began to run.  After I’d unlocked the door, she dropped the leash and fell onto a mouse dung covered platform, which serves as one of two beds.  We stayed there for a few hours, me rereading the journal we keep where everyone who has visited the cabin over the past thirty plus years is encouraged to make an entry, and Emma singing and dancing.

On the way home Emma grabbed the leash once again and tugged on it.

“What?” I asked.

“Go to the indoor pool,” Emma said.

“But it’s too late now, Emma.  We have to go home and get dressed for the picnic we’re going to,” I said.

Emma pretended to cry with an exaggerated facial expression.  Sometimes this leads to Emma actually crying, what begins as a kind of joke can soon turn into the real thing.

I began to sing, “We can’t go to the indoor pool.  We’re going to a picnic.”

Emma picked up where I left off, “I want to go to the indoor pool,” she sang, then looked at me.

“We can’t, we can’t, we can’t,” I sang back.

Then Emma sang, “Tomorrow, tomorrow, tomorrow.”

We went on like this making up verses and melodies, sometimes overlapping each other, sometimes stopping mid “verse” until the other picked it up.

“I could hear you two singing all the way up the trail,” Richard said when we eventually returned to the house.

“Wasn’t that great?” I asked.

“She’s doing great, Ariane,” Richard replied.

And he’s right.

She is.

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Posted in Aspen, Autism, Parenting, Speech

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Cutie

Posted on July 1, 2010 by | Leave a comment

Ariane and Emma were just dancing in the bedroom, no music, just a lot of finger-snapping and hip shaking. She was so cute, laughing like crazy the whole time, rocking back and forth, proud of her new-found finger-snapping ability, looking at Ariane and me with her million megawatt smile. Ariane tried to get her to do ‘the bump’ which made her laugh even more, though she didn’t quite get the hang of it…yet.

I’m sure she’ll be bumping all over the place in a few days.

Emma has been singing all the time lately. I take her for rides around the ranch every morning and late afternoon on a small four-wheel all terrain vehicle. She sings the whole time. She likes it when we drive out into an open meadow behind the barn. I like it too because a family of coyotes lives there. They romp around, looking for mice to chomp on, or sit in the field catching some rays. They are pretty fearless so we can drive right up to them until we’re about twenty feet away. They just lay there blinking, mostly ignoring us.

Unfortunately, Emma mostly ignores them too. I’ll shout out over and over, “Hey Emma, look at the coyotes!” but she barely gives them a glance, preferring to keep warbling while I point and shout. This morning, we went into the field and I saw the coyotes up ahead, so I drove toward them. As I got closer, I saw these little brown fluff balls bouncing up and down, their heads barely visible above the tall grass.

“Look! Marmots!” I shouted, pointing ahead, trying to get Emma to watch as they bounded along the tire tracks I’d made the previous day. Then I realized they weren’t marmots at all, they were coyote cubs, three of them, about a foot long from nose to tail. They were so cute I could barely stand it, hollering at Emma, “Look! Look at the puppies Emma! Look at the coyote pups!”

She looked at them without any reaction, still singing away as they ran up to Ma and Pa coyote. They circled around them, then headed over to a nearby irrigation ditch to lay low while we putt-putted past them. “Emma look! Look at the little puppies! They’re so cute!”

Still no reaction, except for a polite glance in their direction, probably just to appease me or get me to stop yelling so she could sing without any more interference. It bummed me out she didn’t care about the cute little pups. I was so excited I couldn’t wait to get home and tell everyone, but she couldn’t care less. I thought about her autism, how hard it was for her to engage with living beings or her surroundings, and I could feel a little air hiss out of the tire of my joyfulness, my hopes deflating because she’s been doing so well and has been so engaged lately, with Ariane and Nic and me and Paula and even her other young cousins who came over for a super-soaker gunfight the other night.

When I got back and told Paula, moping a little because of Emma’s lack of interest and excitement, she said, “Well you know how Emma is afraid of dogs…maybe she didn’t like seeing them or they scared her.”

“Yeah, that’s it,” I thought, looking at the glass half-full. She was nervous, she doesn’t like dogs. Maybe that’s why she didn’t care.

Or maybe she was thinking, “Puppies, schmuppies, they might be cute…but they got nothing on me.”

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Dedication to a Rock Star

Posted on June 28, 2010 by | Leave a comment

Ariane arrived in Aspen Saturday with Nic and Emma. I’ve been here for a week already, attending the Literary Festival. Ariane’s mom Paula Zurcher (who I adore!) lives here and we come out about four times a year because we love to see her but also to some extent, because travel anywhere else is too difficult. Emma only eats about nine different food items and she only likes to do physically oriented pleasure activities like swimming and skiing. While I think it’s pretty safe to say that Nic wouldn’t hold up too well on a four hour tour of the Louvre, he would at least enjoy other sightseeing activities and have the thrill of visiting faraway places he’s read about or heard about.

No sightseeing for Emma. Unless the sight is a roller coaster or a water slide, which we fortunately have close by in Glenwood Springs, where Nic and Emma went yesterday. Ariane arrived here in time for the reopening of the newly renovated Paepke Auditorium, named after Ariane’s grandfather Walter Paepke, who founded the Aspen Institute,  Aspen Music Festival and Aspen Design Conference, which is now known as the AIGA – the professional association for design. He was a true visionary, a man who accrued his wealth making cardboard boxes, yet had the audacity to run ads for his company that featured art by Herbert Bayer and sayings by Lao-Tzu  — not one word about boxes.

The auditorium opening was amazing, particulary due to the hugely talented Anna Deveare-Smith who performed a reprise of her impression of Paula and her sister Toni DuBrul having lunch with her, which is profound and poignant and one of the funniest things I’ve ever seen.  She ends her brilliant performance with a story told to her by the Paepcke daughters.  Elizabeth Paepcke, their mother, planted a young sapling in her backyard.  Afterward she said, “It will be beautiful in 50 years.”  At the time she was in her 70’s and when it was pointed out that she would not be around to witness that she replied, “I know.  But others will.”

Paula and Ariane would never mention any of this family history stuff on this blog, but there is a legacy to be celebrated that is inspirational and it impacts Emma as much, if not more, as any of us.  After all Emma is the great grand-daughter of those two powerhouses.

Claudia Cunningham is a dear friend of ours who has been incredibly supportive to all of us – the children adore her and when she stays with us in New York, it’s pajama party time. She and I always talk about our firm, no intractable belief that Emma is going to be a huge rock star (and maybe already is). We don’t say this in a half-kidding tone. We mean it. Emma is a natural born performer. She loves an audience, she has an incredible pitch-perfect voice, a set of pipes that can blow the doors off a taxi cab, a gift for the grand gesture and the big finish. And she is staggeringly beautiful.

Why not? Why shouldn’t she be a rock star? She was raised on Gwen Stefani. She loves singing and performing more than anything – even a carousel ride or an all day trip to the water park, and that’s saying something. Should we not dream big dreams for her? Are we over-reaching, not being practical, have our heads in the clouds, our feet off the ground? Are we kidding ourselves? Are we in denial?

Hey, if a business man from Chicago can turn his father’s lumber company into The Container Corporation of America and then go on to create the Aspen Institute, why can’t a beautiful, talented eight year old autistic girl grow up to be a rock star?  She certainly has a head start by having the ambition and vision in her genes.

Here’s to you Emma! You are awesome. And when you read this ten years from now in the back of your limo heading to a sold out show at Madison Square Garden you will always know we believed in you – and never settled for anything less than encouraging your dreams and fueling your heart’s desire every step of the way.

Rock on!

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Emma’s School Bus

Posted on June 25, 2010 by | 2 comments

Emma came home this evening and said, “Sad.”  This was in answer to my question, “How are you?”

“Why Emma?  What happened?” I asked.

“Emma have to go on the school bus.  Emma make you sad,” she said, frowning and nodding her head.

“What do you mean?” I asked kneeling down so my eyes were on the same level as hers.

“You have to wait!  You have to sit!  Emma cry.  Emma bite yourself,” Emma looked directly at me as she said this.

“Why do you have to wait, Emma?” I asked.

“Want to go to Becky’s class.”

“Did your bus come to school early?”  I asked trying to piece together what Emma was trying to tell me.

“You have to wait.  Want to go to Becky’s class.”

“Did someone tell you, you had to wait?” I asked.

Emma nodded her head.  Shouting and pointing her finger she said, “I told you! SIT DOWN!”

At this point I was more than a little alarmed.  “Emma, who said that to you?”

Emma didn’t answer at first, then nodded her head.  “Yeah,” she said in a sad voice.

These kinds of responses from Emma only highlight how difficult it can be to communicate with her and understand her.

“Did the bus driver say that to you or the bus matron?” I asked, knowing these were the only two people on the school bus.

“Bus driver said – I told you NO!  Sit down!”  Emma said in a loud stern voice.  Then in a quieter voice she said, “Emma cry.  Emma so upset.”

I think it was at this point in the conversation when I went to the computer and wrote an email to our lawyer, ccing Richard and Emma’s head teacher, the head master and social worker.  I have no idea what kind of recourse is available to us and so we need advice.  What I do know is that we have had to deal with the Office of Public Transportation since Emma began going to school five years ago.  Emma’s bus arrives between 7:20AM and 7:40AM to take her some fourteen blocks to her school, which begins at 8:30AM.  When I called to complain about the early pick up time, insisting that it cannot possibly take an hour to drive fourteen blocks even if three of them are cross town blocks, I was told the bus picks up many other children who go to several nearby special education schools before Emma is eventually dropped off at her school.  In other words, Emma is driven around the city for close to an hour.  For years now I have questioned the logic in this and have been:  hung up on, yelled at or told this is the way the route is mapped out and there’s nothing that can be done.

A few years ago I was determined to have the bus change their pick up time from 7:15AM to something later.  For two months I went back and forth with various people at the Office of Public Transportation, sometimes calling three and four times in a single day.  By the time they finally agreed to change Emma’s pick up time the semester was coming to an end and we started anew with a new bus company and driver after the break.  Which is another bizarre thing.  Are special needs children the only ones who have a new bus company, new bus driver, new bus route every three to four months?  How is it that neuro-typical children in New York City have the same bus for the entire school year, often for several years in a row?

In the past few weeks I have noticed when the bus pulls up that there seem to be only one or two other children on the bus as was the case Thursday morning, no other children.  Emma was the only child.  So unless the bus is picking up children after Emma, it is driving fourteen blocks (which should take about ten minutes depending on traffic.  If the bus arrives early, (picks Emma up at 7:25AM drives ten minutes to her school, getting there by 7:35AM) it sits idling outside the school until the school’s doors open at 8:25AM.  Which means (if I am correct) Emma is waiting in the bus alone for almost an hour.

What makes all of this particularly horrifying to me is we put Emma on the school bus and cross our fingers she will be treated well and with respect, she will arrive safely at her school in a timely manner, but we cannot know what really goes on because Emma cannot tell us.  We have to trust.  And at this moment I no longer trust.

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Marriage (Part II)

Posted on June 17, 2010 by | Leave a comment

When Emma was diagnosed I threw myself into researching autism.  I was determined to find out everything I could.  I quit my job and devoted every spare second to reading books, trolling the internet for information, talking with specialists, etc.  It was Richard who, one night said to me, “Ariane this isn’t healthy.”

“What are you talking about?” I said indignantly.

“You can’t even see it…  this searching, every second spent reading about autism.”

I remember I was furious with him.  Here I was devoting every second of my free time trying to help our daughter and he was telling me it wasn’t healthy?!

Richard took a deep breath and continued, “You have to go back to work, do something with your creativity. Do something that has nothing to do with autism.”

He was right.  My life had lost all semblance of balance.  And so I did.  I found the career and creative outlet I had been looking for my entire adult life.

The summer after the diagnosis Richard was under tremendous pressure at work. I told him I would take the kids with me to stay with my mother in Colorado for a few weeks so he could have a break and not worry about showing up for the children and me.  The point is we watch out for each other and we encourage each other to have some balance in our lives.

Early on we realized the importance of down time.  Because with an autistic child, all the therapies, no matter which one works for your child, emphasize constant involvement with your child during their waking hours.  I cannot remember ever, in the last six years, sitting down to read the paper without feeling a tiny tremor of guilt.  I should be engaging Emma in some sort of “play” no matter how tired I am.  In addition, not only are you suppose to interact with your child every waking moment, but you are suppose to interact with a child who often does not want to be interacted with.  Despite this, you must pursue them or as Stanley Greenspan used to coach, seduce them.  Add to the mix the lack of sleep, a full work week with all the stresses which come with owning several businesses and… okay you get the picture.  It’s tough.

So Richard and I decided we each needed an evening out.  We picked a night, mine is Tuesday, Richard’s Friday. On my night off I go out with a friend, see a movie or often, just stay at my studio and work late into the night.  We also have a standing date night.  It is sacrosanct.   We have a caregiver booked for the same evening every week.  Both of these nights have been crucial to the well being of our marriage and family.

Over a decade ago during a particularly difficult time in my life I took a walk along 23rd Street where I lived.  It was a clear beautiful spring day and a single crocus had pushed its way up and out of a crack in the sidewalk, a single flowering plant amidst concrete.  I remember thinking how strange it was I hadn’t noticed it before.  After all it was right outside the front door of the building I lived in.

Last week, as I was taking Nic down in the elevator to catch his school bus, he was grumbling about Emma waking him up in the middle of the night.  I reached over and affectionately tousled his hair.

“Mom!  Stop fluffing me!” he said.

I smiled, “I am not fluffing you.”

“You’re trying to make me look like a daffodil,” he laughed, shoving his hoodie over his head.

And I thought of that crocus so long ago pushing up through the great expanse of concrete against all odds.

At a dinner party years ago someone asked each of us to use one word to describe our partner/spouse.  When it was my turn I said, “Kind.”  Richard is of course many things, but that is the word I still think of which sums him up better than any other.

I am a better person as a direct result of being with Richard.  I am pretty sure he feels the same.  We push each other to do the right thing.  We encourage each other to stretch beyond what is comfortable.  We challenge each other.  I can say the same thing about both Nic and Emma.  Each of them pushes me to show up in ways I could not have imagined.  Each of them challenges me to dig deeper, to practice more patience, to stretch, to work a bit harder.  Emma has taught me to appreciate seemingly insignificant things, a hug, a kiss, the unexpected laugh and my life and marriage are the better for it.

A few weeks ago a friend of mine, who is going through a stressful time in her marriage said, “Life is hard, suffering is optional.”

Being able to see the crocuses makes it a bit less so.

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Posted in Autism, Marriage, Parenting, Siblings, Stanley Greenspan

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Marriage (Part I)

Posted on June 16, 2010 by | 1 comment

(*I have come to regret beginning this post with these statistics as I think it takes away from the main point.  ALL marriages will inevitably encounter stresses that will place a strain on the best of marriages.  It is not about blaming autism.  It is life.)

The divorce rate of parents with an autistic child is said to be 80%.  However I have found no studies to support this statement or even any articles showing where this seemingly arbitrary number came from.  Challenges of any kind can strain relationships.  As the parent of an autistic child in addition to the stress and financial strain, there are the legal hoops one must jump through to get ones child basic services with the Board of Education, the Board of Public Transportation, insurance companies, the lawyers, the hearings, the paper work and the sheer bureaucracy of advocating for your child.  It is the workload equivalent to running a small business if not more.  When you add the fact that many autistic children have disruptive sleep patterns causing further complications to a family already struggling to cope, you have a situation that will test the strength of any marriage, no matter how solid.

Richard and I have certainly had to weather our disagreements, though fortunately around the big issues:  methodologies, treatments, our vision and hopes for Emma – we agree.  I know of a couple of instances in which one of the couple just couldn’t cope any more and the diagnosis pushed them over the edge and out of the marriage.   I remember early on after we had received Emma’s diagnosis I looked at Richard and said, “How are we going to get through this?”

Richard replied, “Together.”

And for us in many ways it’s that simple.  (Though I need to be reminded of this from time to time.)  We don’t do it alone.  When I am having a moment usually in the middle of the night perseverating on some worry about something I have little control over or which simply hasn’t happened yet – will Emma ever live independently or who will take care of her when we die or will she ever be able to read and write or will she need tens of thousands of dollars worth of dental work because she still sucks her thumb (yes) or will she ever be out of diapers (these are a few examples from my current playlist) or any number of concerns ricocheting around in my head like a pinball, Richard will reassure me, “It’s going to be okay, we’ll get through this.”  There are times when I feel as though I am trying to claw my way out from a dark abyss of fear that ambushes me, pulling me down.  Richard and I have a kind of short hand for this.

“You’re spinning out,” he’ll say after listening to me for a while.

“I know,” I will reply and I do know.  The knowledge doesn’t help me stop myself.

And then he talks me down or if that fails, because I can be stubborn, he will listen a while longer before finally interrupting me with, “Okay, my turn.  You’re totally out of control.”  His is the blunt, direct approach.  It can be quite productive.  He will then go on to point out why my thinking is deranged.  90% of the time I can listen to him and calm down.  Richard has his own version of spinning out, but it’s usually work-related.  Which isn’t to say he doesn’t worry about Emma or Nic, he does, it’s just he is better at having some perspective on them and doesn’t get as easily thrown into the “doomsday pit” of despair.

When Emma is having a melt down, which can go on for quite some time, we pitch hit.  One of us will try to soothe her and when the other sees it isn’t going well – our patience is fraying – the other will jump in.  Most of the time one of us is able to maintain a calm the other is lacking.  Of course this leaves poor Nic fending for himself.  Though Nic, too, has gotten quite adept at calming things down.  “Here’s what you guys need to do,” he’ll say, looking up from his latest drawing of some fanged, blood dripping, all powerful monster.  “You can’t let her get away with this.  She won’t stop and she needs to learn she has to stop.”

Richard and I look at each other with raised eyebrows.

“You need to choose the thing that’s most important and work with her on that first.  Because otherwise it’s just too much,” he’ll add.

Smart kid.  (A post devoted to siblings of autistic children next week.)

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Emma’s Language

Posted on June 8, 2010 by | Leave a comment

I am lying in bed reading.

Emma comes running in looking for me.  She stops when she sees me.  Huge smile.  In her hand she has two pieces of what are left of her blanket she calls“cokie”.   She drapes the smaller piece on my arm and says, “That one Binky, mine!  Ohhhhh!” She runs to the other side of the room.

“Emma!” I say in an animated voice.  “Are you letting me have your cokie?!”

“Wait a second.  That one cokie,” she says holding the larger piece of her old blanket in her hand.  She jumps up and down.

“Is this piece mine?” I ask.

“That one Binky.  Awww…” She says in her sing-songy voice.

“I have Binky and you have Cokie?” I ask.

Emma twirls around holding her blanket.  “What’s boy?”

I put my ipad away and sit up.  “What is boy, Emma?”

Emma seems to not hear me.  “What’s ee- day? Boy gone.  Yes!” She says while continuing to twirl in place.  “Booooooy..” She says the word as though it were several syllables.  Her voice rising in the middle of the “o” sound and coming down at the end, stretching it out, playing with the sounds.  She pauses and stops twirling.  “Ee-day is gone.” She begins to twirl again.

“Who’s ee-day? “ I ask.

“Ee-day move away.  Ee-day is gone.”

“Emma, do I know ee-day?

“Ee-day move away.”  She begins to jump up and down.  “That’s right.  Boooooy, ee-day gone.  Ee-day is gone.  Ee-day is gone.”  Emma stands still and continues twirling a piece of her hair around her finger.  “What’s watch your finger?  What’s boys?  What’s watch your?  What’s watch, wash your finger?”

“Are you saying watch or wash, Emma?”

“Booooy – wash your finger’s gone,” Emma sings the words.

“Emma, is it wash – like washing soap or watch, like you watch Elmo?”

Emma says nothing.  She stands still with her head cocked to one side and twirls the lock of hair. Twirl, twirl, twirl.   She stares at the piece of hair as she twists it around.

“Or are you saying watch out!” I ask.

Emma looks at me, “WATCH OUT!  WATCH YOUR FINGER!  BE CAREFUL!!”  She shouts while jumping up and down.  Then she begins to laugh.

“Did someone at school tell you to watch your finger because it might get caught in something?” I ask.

“You have to be careful.  Watch your finger!” Emma says.  She runs over to me and yanks away the piece of her blanket still draped on my arm.  She runs away and then comes back and gently places the scrap on my head.  “Ahh, it’s your Binky.”

Earlier that day Emma was taking a shower.  “Emma make sure you use the soap,” I tell her.

She dutifully washes her body with soap.

“Now make sure you rinse your body off.”

Emma stands just to the side of the spray, soap covering her.

“Wash the soap, Emma,” I say.

Emma holds the bar of soap under the water.

Okay, that makes sense, my mistake, I think.  “No not the bar of soap, the soap on your body,” I explain.

Emma moves under the spray and proceeds to wash the soap off of her body.

I don’t know what Emma hears or what goes on for her when she is being spoken to.  I do know she takes things literally, as when I told her to wash the soap, meaning wash the soap off her body.  Often, as in the first conversation, Emma seems to be working through something, though it’s not clear to me what.  Either that or she likes the sounds and is playing with the sounds of the words and their various meanings.  My guess is there is much more going on than I am able to figure out.  I am almost always perplexed by Emma’s language.  It is foreign to me and while I am learning to speak a little of it, I have a long, long way to go.

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Rules

Posted on June 2, 2010 by | 3 comments

Emma can be very strict.  She is a stickler for rules.  Merlin (see yesterday’s post) is not supposed to jump up onto the counters or dining room table.  If he does, Emma shouts, “Merlin!  Get down!”  Even if he hasn’t jumped up on the counter (yet) Emma will remind him, “Merlin!  You may not get up on the table.”

If we have a vase of flowers on the dining room table Emma will repeatedly warn Merlin (whether it applies or not) “Merlin, kitty, you cannot eat the flowers!”  Then she’ll laugh.

These are all things she has heard us say at some point and Emma is a terrific mimic.  She will not only repeat the things she hears us say, but she will mimic the tone.  There’s a word for what she does.  It is – echolalia – common among autistic children.  Echolalia is the parroting or echoing of sentences and phrases heard.   Emma does not make the sorts of linguistic mistakes commonly heard in young children.  She does not say things like – I bringed it to her – something often heard from young neuro-typical children as they try their best to navigate the English language.  On the other hand Emma will say – Bye Emma! When saying good-bye to someone, whose name is definitely not Emma.  It is what she hears them say to her when they or she is leaving.  Why would she say anything else!?  To Emma “Bye Emma” means a parting of ways.  Or, as in the case of a dinner party we had a few months ago, Emma felt it was time for everyone to leave, she announced – “Dinner is all done!  Bye Emma!”  When our guests, understandably confused, said, “Oh!  Are you going now?” but did not themselves show any sign of leaving, Emma began bringing them their coats, saying, “Bye! Bye Emma!”  while vigorously waving her hand good-bye.  Needless to say she cleared the place out within minutes, despite our reassurances that it was not time to go yet and wouldn’t they like to stay and have some coffee or tea.

For Emma, however, we had eaten, she had patiently waited while this occurred.  She knew there would be dessert after which she would be allowed to blow out the candles on the dinner table while singing “Happy Birthday” (Any party is a birthday party and remarkably some guest almost always is about to have or has just had a birthday – so it confirms Emma’s ‘party = birthday party’ theory.)  Once Emma has sung Happy Birthday, usually several times and with all of us joining in for the third or fourth “last time” rendition – it is time to go to bed.  Emma has a difficult time understanding that we may not be ready for bed.  We may want to move into the living room to talk, have some tea or coffee and enjoy each other’s company.  This, for Emma, is not how it should be, it is her bedtime now and so it should be everyone elses too.  This sort of flexibility does not fit into her “rules”.  The guests should leave and if they do not, then Emma must remind them.

When Emma was beginning to talk she did not say single words, but whole sentences.  See previous post – “Emma at Ten Months Old”.  As Emma grew older, she would repeat things she heard others say.  But the things she latched on to were things said with a great deal of emotion, or, as Stanley Greenspan used to say, “high affect”.  Sometimes these comments were in context, but other times they were arbitrary.  A dear friend of mine who has two children just a bit younger than mine admonished her son in the playground one day while we were there.

“Rogan NO!”  She shouted, as her son dashed toward the gate leading out onto 10th Avenue.  Emma, for the next four years mimicked her in all sorts of situations.  Often it was when she wanted to go somewhere, but knew she shouldn’t, but just as often it was arbitrary.  Emma would shout, “Rogan NO!”   Sometimes she would add  “You have to come back!”  And sometimes she would just use the short hand version  “NO!”  But we knew from the way she said it, the tone she used who she was mimicking.  She had captured the voice perfectly.  A few years ago we ran into my friend with her children in the park and Emma upon seeing her, immediately said, “Rogan, NO!”  Fortunately my friend has a good sense of humor and didn’t take offense.

Emma does the same thing with another friend of ours.

“Jack!” Emma will shout in a stern voice.  Then “Jack!  Jack!  Jack!”  Said in rapid succession.  She captures the child’s name and the anxiety ridden pitch perfectly.  At Nic’s birthday party a few years back, Emma, upon seeing Jack’s father, started shouting – Jack!  Jack! Jack!

“I guess that’s how I sound, huh?” The father said, looking slightly embarrassed.

How to explain?

For Emma, rules help her cope in a world run riot.  Rules provide sameness and from that, Emma derives comfort.  Though Emma has been known to question some of the rules she does not like.  “We cannot make pancakes,” Emma will say, knowing it is a school day.  She hopes maybe we will make pancakes anyway and this is as close to a question as we often get.  But once confirmed, “No we cannot make pancakes this morning.  It’s Wednesday,” one of us will say, Emma will begrudgingly accept this.  It is our rule after all.

“Sleep, wake up, sleep wake up, sleep wake up, pancakes!” Emma will respond.

“Yes.  That’s right.  Pancakes on Saturday and Sunday.”

“Make pancakes with Mommy?”  Emma will say with a sly grin, trying one last time to see if this ‘rule’ can be suspended if for only one day.

“Pancakes with Mommy on Saturday.  Today is Wednesday.”

“Okay,” Emma will say.

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Entering Emma’s World

Posted on June 1, 2010 by | 1 comment

Early on I knew if I wanted to have a relationship with Emma I needed to enter her world as much as possible.  I tend to project – feelings, thoughts, abstract concepts – none of which are helpful.  Emma’s world does not include the kinds of “feelings” I tend to apply.

For example, upon much urging from Emma, we adopted a cat last November.  Emma rarely expresses a desire for things and so when she began asking to go to various animal shelters and saying, “Now take kitty home,” we felt we needed to oblige.  We went to a rescue shelter together and after about three hours left with Merlin, a black male, just under a year old.  I know Emma enjoys Merlin and is glad we brought him home.  She stopped asking to go to animal shelters or the pet store.  So whatever it was she wanted from having a cat of her own, Merlin has accomplished.  Yet it remains a mystery to the rest of us as to why she was so insistent on having a cat.  Particularly as now that we have one, she seems content that he has been brought into the fold, but by no means appears enamored by him as the rest of us have become.

If Merlin is sleeping in his favorite spot – the rocking chair – the single most coveted piece of furniture in our home, Emma will simply tip the chair over until he falls out.  Nic is horrified by her matter of fact actions and always cries out – “Poor Merlin!  She’s doing it again, Mom.”

Having removed Merlin, Emma then plops down into the rocking chair and proceeds to happily suck her thumb.  We attribute all sorts of “feelings” to her actions.  She doesn’t care about Merlin.  She doesn’t love him as we do.  And in Nic’s case – he feels she is “mean” to Merlin.  But to Emma, Merlin is occupying the place she wants to be and so he must be removed.  It’s pretty simple.  I don’t think she is thinking of Merlin’s feelings.  My guess is she cannot understand why the rest of us react the way we do.  “Poor Merlin!” we say and now she laughs and tips the chair at an even more precarious angle.

When Emma “plays” with Merlin she will whip his toy around her head, rather than try to engage him in play.  His toy is interesting to her, but the idea that it is his toy and one to be used to play with him is something Emma doesn’t seem to understand.  If one considers that “playing” for Emma is an abstract concept, one she does not come to easily then all of this starts to make more sense.  And yet, Emma continues to surprise us.  There are times when Emma clearly is playing with Merlin and enjoying it.  She will grab one of his “mice” which is attached to a string and run through the house, the mouse rocketing along behind her with Merlin hot on her heels.  She squeals with laughter as do I while watching her.  Emma is taking pleasure in something she loves to do – running – but is also taking pleasure in Merlin running too.  It suggests an awareness of “other” which denotes tremendous progress.

Friendships with her peers are not easy for Emma.  They are something she needs help with.    I believe she desires the interactions, but people are unpredictable, particularly young children.  Her head teacher recently sent home this photo of Emma holding hands, (unprompted by any adult) with her classmates while out on an outing.  It is wonderful to see.  (In this photo Emma is wearing a weighted dress, which her school encourages her to wear, as it calms her.)

Emma has a number of “friends” now, much to our pleasure and dismay.  But Emma does not play with her friends as a neuro-typical 8-year-old girl would.  There are no whispered “secrets” or friendship bracelets being exchanged.  She clearly cares deeply for a number of friends, but when they are thrown together she isn’t always sure what to do with them.  Her “best” friend is an adorable little boy named Ben and they often sit together during lunch, sometimes even hold hands.  I cannot begin to express the joy it gives me to know that Emma has a special friend, one whom she looks forward to seeing and wants to sit next to.  How she feels, what she thinks, I cannot begin to know.  What does “friend” mean to her?  I do not know.

In order to know Emma, one must try to toss aside any preconceptions about intent or feelings.  In fact, I have learned over the years, I must put aside all of what I think I “know” about human behavior and enter a state of “what is”.  “What is” =  my description of Emma’s mind.  There is no “good” or “bad” – it simply is.  If  one has ever attempted meditation one will know how difficult it is for most of us to enter a state of non-judgement.  A state of just being present.  People spend thousands of dollars and years of their life attempting to gain mastery over this “practice”.  Emma comes to it naturally.

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The Search

Posted on May 10, 2010 by | 1 comment

One of the things I realized early on in my search to help our daughter was, there are a number of people who believe they know what causes autism and many more who believe they can cure it.  There is also a tremendous amount of money to be made from desperate parents, like myself.   I cannot tell you how often I took Emma to an alternative “healer” who claimed, if I just kept going and paying them their enormous fee, Emma would be cured.  I do not believe these people meant to deceive, I think they really have convinced themselves their method will cure a child and if it does not, it is because we didn’t give it enough time.

In many ways Bruno Bettelheim’s refrigerator mom is alive and well even if it has taken on a new twist in today’s world.  While no one came right out and said – You are to blame for her autism (and to blame if whatever method they were pushing didn’t cure her) – it was inferred by the questions they asked.  What follows is a sampling of a few of the questions I have been asked over the years.

Did you drink caffeine during your pregnancy?

No.

Did you or do you drink alcohol?

No.

Did you take any sort of medication during your pregnancy or labor?

No.

None?

No.

What about aspirin?

No.

Did you sun bathe?

No.

Did you have an epidural during labor?

No.  No drugs, natural childbirth.

How long did you breast feed?

9 months.

Just nine months?

Yes.  Emma didn’t want to breast feed, she weaned herself.  I wasn’t going to force her to breast feed when it clearly distressed her.

Ahhh…  Did you eat fish?

A couple of times.

What kind?

Grilled swordfish.  I didn’t know about the mercury levels in fish when I was pregnant with Emma.  It was only a few times when we were in Cape Cod.

Uh-huh…

There it was, finally, the answer they were waiting for.  Depending on the practitioner, the questions changed and as a result, my answers, but there always came a point when I gave the “wrong” answer. It always ended the same way with the same look – eyes downcast, a slight sad shake of the head.  I came away from these ‘interviews’ feeling angry, but I also wondered if there was any truth to it.   Maybe the two times I ate grilled swordfish while we were in Cape Cod, really was enough to cause her autism…  I think as a mother, it is second nature to wonder if something one did during pregnancy horribly effected the baby.  To this day I feel tremendous guilt for having unwittingly eaten swordfish during my pregnancy with Emma.  I honestly did not know how toxic our oceans had become.

I have become particularly wary of those who are adamant autism is caused by any one thing.  My guess is, it’s multi-causal, but who knows?  I am also wary of those who speak with absolute assurance they know how to “cure” autism with diets, behavioral therapies and alternative remedies.  Autism is a neurological disorder and while all of these things may play prominent roles in children getting better, I have yet to meet a child who has been cured, in fact, I have yet to meet anyone who has met a child who has been cured.

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Mother’s Day

Posted on May 7, 2010 by | Leave a comment

Every year when Mother’s Day rolls around I think about buying a trophy for Ariane. But if you’ve ever seen the kind of “World’s Best Mom” statuettes they sell in gift shops, you’ll understand how easy it becomes to resist that impulse. To do full justice in honoring her ceaseless sacrifices, her boundless commitment, and her indomitable courage in the face of repeated heartbreak, I’d have to commission a giant gold statue of her in full Viking Goddess mode, hair blowing in the wind, fist outstretched in an upward and onward call to arms as she stands atop a mountain of diapers, empty vanilla milk cartons and pancake batter, Emma perched on her shoulder with her thumb in her mouth, her other hand clutching her blanket Cokie as it flutters behind them like a triumphant flag.

Maybe next year. God knows she deserves it.

It’s hard being a mom. It’s hard being a mom for a normally developing child. Harder still raising two normally developing children, which is what we both thought we were doing in Emma’s first year of life. She logged in countless hours in countless playgrounds, bookstores, zoos and museums – with more than a gazillion trips to the Museum of Natural History alone — which Emma still calls the Snakebite Museum because she obsessively goes up to the third floor on each visit to see the diorama of a boy laying on the ground that’s been bitten by a snake.

And it’s hard…really, really hard…to be the mom of an autistic child. It’s hard being the dad of an autistic child too, but not as hard as it is for Ariane. For one thing, Emma can only bond physically with one person in the world, and that’s mommy. She might sit next to me, or lay in bed next to me, but we can’t cuddle. She likes to stroke my arm and she really likes to slap it. But I cannot hug her for more than a few seconds, I cannot hold her in my arms, I cannot sit with her in my lap in the rocking chair, not for long anyway.

She is not daddy’s little girl. She is mommy’s little girl. And along with the joys of that affection comes a world of responsibilities that are extremely difficult to bear when they rest on one person’s shoulders. Only mommy can comfort Emma when she stubs her toe, or gets a cut. Only mommy can hold her and say, “It’s okay.” I cannot count how many times I’ve run to Emma’s assistance when I’ve heard her screaming, only to have her run right past me and into mommy’s arms. And when Ariane is out of the house and she injures herself, there isn’t much I can do but try and calm her while I get a bandaid.

This next part is difficult to talk about, but I think it needs to be said in order to fully appreciate what this has been like for Ariane. Emma has only been able to poop in the toilet by herself for the last year. She has had chronic constipation we have tried everything to relieve for as long as I can remember. Ariane, being the only one who could really hold her, had to hold her on the potty while Emma screamed in agony, trying to relieve herself. This could go on for more than an hour. Every day. For years. Think about it. Now add to this the fact that Emma screams louder than a jet plane on takeoff. Nuff said.

Mothers of autistic children have to cope with another burden that never seems to fully go away, not that I’ve seen anyway. Guilt. Ariane is not alone in this respect, every mother of an autistic child that I’ve ever spoken to about this has said pretty much the same things: “I shouldn’t have eaten so much fish when I was pregnant. Or exercised. Or done those leg lifts the midwife told me to do because they said she was breached – and she wasn’t. I shouldn’t have gone down to the World Trade Center after they blew it up and all that smoke was in the air. I was too old to have another child. That’s what did it. That’s what made her this way.”

I’ve never heard the father of an autistic child wring his hands over his role in ‘causing’ their child’s autism, even though some studies have said that one possible factor in the disease is the age of the father, not the mother. But the mother bears the child and that seems to lead to countless recriminations and self-blame that doesn’t even end after the child is born. “I shouldn’t have given her that MMR vaccine. I shouldn’t have given her any vaccines.” And so on.

I once said to Ariane, “If you were talking to another mom with an autistic child, would you blame her? Would you tell her it was all her fault?”

Of course not. But I wonder how much these thoughts have faded even after all this time.

As soon as we got the diagnosis, Ariane must have read every book on the subject. While I consider myself to be a pretty good dad, equally concerned and committed to healing our daughter, I have still never read a single book on the topic, not cover to cover. Maybe I’m just being a guy, but my initial response was to Google everything I could discover about possible causes and treatments in the most concise descriptions possible. I couldn’t take the pain of all those details, of all those suffering voices. “Bottom line it for me.”

Ariane tried every possible treatment she had heard about on the internet – from other mothers, of course. She has documented many of these efforts on these pages. For example, she mentioned here that she once baked a casein-free/gluten-free cake for Emma’s birthday that took her hours and hours to make. No flour, no yeast, no dairy, no sugar. I couldn’t believe how good it tasted. “What’s in here, fairy dust?” I asked, reaching for a second slice.

Emma never took a single bite of it. That trophy I was talking about should have been awarded for this feat alone. I might have to commission one after all.

Happy Mother’s Day Ariane. I love you. Nic loves you. Emma loves you.

You are amazing.

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Emma At Ten Months Old

Posted on May 5, 2010 by | Leave a comment

I sat in the pediatrician’s office with Emma squirming on my lap.  “She’s not really talking.  I mean she says words grouped together, but not single words.”

“Like what?” the pediatrician asked.

“Ba-bye, Da-da, Ah-done… things like that.”

“Smart kid,” the pediatrician said, checking Emma’s reflexes.

“So there’s nothing to worry about?” I asked.

“She looks great,” the pediatrician laughed, as Emma scooted across the room one leg jutted out in a crab-like crawl.

Thirteen Months

“So I shouldn’t worry, right?” I asked the young master’s degree student, studying speech therapy, who was Nic’s ‘teacher’ at his pre-school.

She nodded, “Some kids, especially the ones who are more athletic often have delayed speech.”  She looked at me with a smile.  “And her brother is pretty precocious, sometimes their younger siblings are slow to speak.  I’m sure it’ll come in time.”

I was turning into one of those neurotic New York moms.  It was classic.  I needed to stop worrying, Emma was fine, I told myself as Nic and I walked home from his pre-school.

Twenty-two Months

“Do you think she might have a hearing problem?” I asked my girl friend.

“But she looked up when that siren went by,” she reasoned.

“Yeah, I know,” I said, watching Emma push an empty swing.  “Watch this.  Hey Emma!” I called out.

No response.

Louder, “Hey Emma!”

Nothing.

Now shouting, “Emma!  Emma!  Look at Mommy!”

But Emma continued to play with the empty swing.

“Okay, but half the time my kids don’t look at me when I call them either.  Kids do that,” my friend said.  “Don’t they?”  She looked at me with half a smile.   “Anyway who wouldn’t be mesmerized by that swing?” she added, putting her arm around me and giving me a squeeze.

Thrity-One Months

“When was the last time you heard Emma say, Chase me?” Richard asked.

I thought for a few seconds.  “When was the last time you heard Emma say anything?” I asked in answer.

This was the conversation that poked the final hole in my bubble of denial.   It was August and we had rented a house in Cape Cod.   I remember standing in the living room, looking outside, watching the children.  Nic and Emma were on the porch in their ‘swimming pool’ a make-shift plastic tub we’d filled with water.

The mask I had so meticulously constructed for myself and my family fell away revealing something I couldn’t identify and could not understand.  I remember telling myself to breathe through the rising panic that threatened to consume me.   And then I remember feeling the feeling that I would feel many times in the ensuing years.  Failure.  Something was terribly wrong with my child and I had failed to see it, failed to do something about it.

As often happens when I feel overwhelmed, I began to make a mental list of actions I would take the instant we returned to New York.    The first two items on my list were:  get a hearing test done and get an evaluation.

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Mommy & Me Class

Posted on May 4, 2010 by | 2 comments

One of my girlfriend’s and I decided to enroll our daughters in a Mommy & Me class at the Children’s museum.  Emma was walking, so it must have been when she was about eighteen months old or so.  Our daughters were born four weeks apart and it was a way for us to see each other in a city where one routinely must make appointments months ahead to see even close friends.

During the first class Emma became fixated with the guitar, which the young woman who was leading the class played periodically through out the hour and fifteen minutes.  When Emma wasn’t trying to grab the guitar out of her hands, she was dashing up the wooden ladder, crawling through a series of tunnels and sliding down the inflated slide, over and over and over again.  Meanwhile my friend’s daughter was listening to the stories, happily creating all sorts of “art”, interacting with the other children and seemed content to go along with what was being offered.  I laughed it off at the time, but I remember on the subway ride home feeling ashamed and lonely.  They weren’t feelings I could logically explain.  I mentioned to Richard when he returned home from work in the  evening that Emma didn’t seem to like the mommy and me classes.  Beyond that I was unable to put the feelings into words.  I just felt an inexplicable heaviness.

As was typical, I persevered, hoping she would grow out of it, whatever “it” was and kept showing up for the weekly classes that spanned three months.  While other children seemed to develop relationships with one another, albeit rudimentary ones, Emma continued to show no interest in any of the children or adults, for that matter.  I remember clinging to the idea that she was independent.  Looking back to that time, even now, is painful.  I realize we were in limbo, a sort of odd “in between” place which I was unable to recognize, much less express.

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A Tribute To Stanley Greenspan

Posted on April 30, 2010 by | 7 comments

We first heard of Dr. Stanley Greenspan and his work through another parent who had seen some success using his DIR/floortime methodology with their autistic child.  I read his book:  The Child With Special Needs, which led to our appointment for a floortime training session with Emma.  We drove to Bethesda, checked into the hotel, took Emma swimming and hoped we might all get a good night’s sleep for what we guessed would be an exhausting day.  In preparation for the meeting, Richard and I watched some of Stanley’s training videos.  We felt we had a vague idea of what was expected of us.  Whether we would be able to engage and interact with Emma in the DIR way or not, we were not so sure.

So it was with some trepidation that we were ushered into Stanley’s office – a small dingy room with some toys, a few broken, Stanley’s desk and piles of papers and books.  Stanley asked us a number of questions, all the while watching Emma intently.  “Okay.  Mom, why don’t we start with you?” He said, still watching Emma.

“Hey Emma!” I said, huge smile, high affect.  “What should we play with?!”

Emma ignored me and wandered over to the couch where Richard was sitting.  I ran over to her, tried again to engage her, “What do you want to do?  Do you want to play with this,” I asked, thrusting an armless doll at her.

The office was hot. I could feel perspiration beading on my upper lip.  After about twenty minutes Stanley said, “Okay Mom.  That’s fine.  Now I need you to take that energy and up it by about 100%.

“You’ve got to be kidding!” I exclaimed.

Stanley smiled at me,  “You have a nice connection with her. “

As he spoke, Emma was busy trying to open the door to leave the office.  I tried to pull her away.  “No, no Emmy, we can’t leave yet, “ I said.

Emma resisted me and continued to turn the door’s handle.

“Em, it’s not time to go yet.  We have to stay here,” I said, pulling on her arm to come with me.

“Block her!  What will she do if you put yourself in the way?” Stanley asked.

I wedged my body between the door and Emma.

Emma tried to reach around me.

“What do you want me to do?” I asked.

Emma tried to push me out of her way.

“Oh!  You want me to move?”

“Don’t make it so easy for her.  Make her tell you what she wants!” Stanley coached.

“Emma, what do you want?” I asked, sure that this was leading to a melt down.

“Open it!” Emma said.

Richard and I gasped.  WOW!  We hadn’t heard Emma say that since she was 13 months old.

Stanley was brilliant.  Keenly observant, unfailing in his critique, he encouraged us to follow Emma into her world.  To interact with her, “playfully obstruct”, “entice her”, were a few of the things he encouraged us to do.  “The worst thing you can do is nothing at all,” he said, as our session came to a close.

When we returned home his insight and words stayed with us. We enrolled Emma in the Rebecca School in New York, which uses the Greenspan DIR approach. It is the only school in New York City using this model.  Richard and I undertook additional floortime training sessions at the Rebecca school and hired their DIR training specialist to work with us at home.  Alex trained Emma’s therapist, Joe as well.  Hence the “Zen Master of DIR” label in the last post.

Dr. Greenspan had a consulting relationship with the Rebecca School and we were privileged to have two sessions with him over the last three years. The entire school faculty was in attendance and Stanley was conferenced in by telephone. Richard and I began each session by updating everyone on Emma’s home life, her progress and problems and our questions on what we could do to help her.  This was followed by her teachers’ review of how Emma was doing at school. Whenever they addressed an area of difficulty, such as Emma’s self-injurious behaviors like biting herself, instead of giving his recommendations immediately, he asked the faculty for their ideas. He listened patiently and then offered his own suggestions, which were always so intelligent and insightful that Richard and I would look at each other with an expression of awe – and gratitude.

Dr. Stanley Greenspan’s ideas and methodology changed everything for us.  His belief in the intelligence and abilities of each and every child were a profound change from the kind of rote “training” we had heard and received in the past. To say that his presence and guidance in our lives will be missed is a vast understatement. It is a great loss for us and for all the parents and children who will never have the opportunity to experience his keen analysis and problem solving ability on an individual basis.  Yet his legacy will live on through his books and videotapes, his DIR Support Services under the brilliant stewardship of his son Jake, a floortime genius in his own right – and with schools like Rebecca School, which have adopted his teachings as their principle therapeutic model, helping countless autistic children and their families like ours move forward one day at a time.

For more information on Stanley Greenspan and his work with Autism read:  Engaging Autism & The Child With Special Needs and go to his web site:  www.stanleygreenspan.com

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