Tag Archives: living with autism

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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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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Soma Mukhopadhyay’s Workshop

Posted on June 7, 2010 by | 2 comments

A number of people contacted me regarding the documentary – A Mother’s Courage – the documentary about an Icelandic woman’s search to help her autistic son.  The documentary tracks the journey of a mother who interviews many and eventually goes to Austin, Texas where Soma Mukhopadhyay has created the Halo Clinic.  Soma is the mother of a non-verbal autistic child, Tito.  (Tito is no longer a child.) Soma developed a program, Rapid Prompting Method, to teach her son to read and write.  Tito has gone on to write several books, despite being non-verbal.

Joe, Emma’s therapist and I drove out to the Bronx this past Saturday where Soma was leading a workshop.  Soma described RPM as a method to “empower the student and express himself.”  Soma’s method takes a non-judgmental view of self-stimulatory behaviors.  She believes they are clues that can help us interact and teach the autistic child.  Soma never once implied nor does her website that her method is a “cure” for autism.   RPM is a means by which autistics can learn to communicate.

For those of us who parent an autistic child, that is an amazing and wonderfully hopeful prospect.  There is not a day that passes when I do not have the thought – I wish I knew what Emma was thinking.  I wish I had a window into her world.  The idea that Emma might one day be able to read and write is something I have hardly dared to wish for.

Toward the end of the workshop, Soma’s son Tito wrote on the large pad of paper Soma had propped up on an easel:  “I think you are talking too loud.”  Soma had been speaking into a microphone.  She held the microphone to his mouth so he could hear how he sounded as he made a noise into it.   It was a light hearted moment, a moment of a teenager commenting on his mother.

Tito writes in his book – The Mind Tree:  “One day I dream that we can grow in a matured society where nobody would be ‘normal or abnormal’ but just human beings, accepting any other human being – ready to grow together.”

I have ordered Soma’s book describing in detail her Rapid Prompting Method.  I am guardedly optimistic.

For more information on Soma and her work with her son Tito, go to:  www.halo-soma.org

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Posted in Alternative Therapies, Autism, Parenting

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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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Posted in Autism, Parenting, Speech, Stanley Greenspan

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Sunday in the Park with Emma

Posted on May 31, 2010 by | Leave a comment

Most Sundays we all play around the house until noon and then Ariane will do something with Nic while I take Emma on an outing, usually to the “big park” – Central Park. Emma knows what she likes and likes her routines, so most of the time our forays are predictable, except when I try to mix things up deliberately just so she doesn’t get too OCD about it. In the Spring, Fall and Winter months, the routine begins with a visit to the “big carousel” followed by the zoo, the children’s zoo, FAO Schwartz and the Apple store. Sometimes we start with a trip to the Natural History museum and then do one or two items on the other itinerary.

In late Spring, Emma will begin talking about how “the ice skating’s all gone…ice skating over”, in a very sad voice with a very concerned frown. In truth, she’s much more excited than sad, because she can’t wait for Memorial Weekend when an amusement park opens up where the ice skating rink used to be. It’s called Victorian Gardens and Emma has been talking about it and going over to the rink to see if it’s open every weekend for the last month.

Hooray! It opened this weekend and she went on Saturday with Lee and Sunday with me. We spent a few hours there and then we changed into her bathing suit and went to one of the playgrounds inside the park that has a nice sprinkler and a series of little pools she can sit in. We spent a couple more hours there, Emma playing in the water and in the sand and climbing and sliding.

When it was time to go home, Emma did a really good job of rinsing the sand off as soon as I asked her to – something that used to be incredibly difficult to get her to do without a complete tantrum. On the way to the train we stopped for a snack and sat on a park bench. While she was sitting there, happily munching away on her Pirate Booty, she pointed to a butterfly and said, “butterfly.” She pointed again when a woman walked by pushing a carriage and said, “baby asleep in the stroller.”

This is the second weekend in a row that she has pointed repeatedly at different things and labeled her sightings. I’m sure this won’t seem very significant to most people, but it was her lack of pointing and labeling that finally ‘clinched’ her diagnosis with ASD and cut through our last shred of denial. To see her pointing at things while looking at me for my reaction fills me with great joy – and hope.

Years ago we started a diary book that we called Emma’s Hope Book, where we listed every little advancement she made as a way to focus on the positive aspects of her recovery and to bolster our spirits as we repeatedly slid into despair at just how slow her progress has been compared to normal children her age. “Compare and despair” is a recipe for hopelessness and so we still cling to every new achievement as a victory flag placed on top of a mountain.

Emma’s Hope Book is alive and well here (and now open to the public) and more than ever does it serve it’s intended purpose for us – to cut through the other side of our denial — our denial of her gradual but indisputable progress. She is getting better, slowly but surely, more slowly than we would want of course, but moving forward one day at a time. We have hope – and the evidence documented on these pages – that she is getting better a little bit at a time, day after day.

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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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Posted in Alternative Therapies, Autism, Gastro-Intestinal Issues, Parenting

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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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The Kiss

Posted on April 28, 2010 by | 5 comments

Last night, after Richard and I realized Lost was NOT airing a new episode, we decided to watch the amazing documentary “A Mother’s Courage”, which a number of people saw and contacted me about.  Emma was sitting in bed next to me, (she does not go to sleep much before 9:00PM, despite waking at around 6:00AM).  I was propped up on some pillows with my knees bent.  Emma ran her index finger up and down my arm, saying, “You may NOT hit Mommy.  You have to be gentle.”

Emma wants to hit the people she is most fond of.  All of us tell her when she does this, “You may NOT hit, Emma.  You have to be gentle.”

Sometimes I’ll add, “Look, Emma.  Like this,” and then I’ll stroke her arm or face.  So last night Emma was parroting this and, it seems to me, practicing.

I laughed when she ran her finger up my arm.  “That tickles,” I said.

Emma laughed, “Be gentle.”

I nodded my head, watching the television as the documentary began.

And then Emma leaned over, with a enormous grin on her face and kissed my left knee.  Emma has never initiated a kiss like this.  She kisses me good-bye or when I get home from work.  She’ll kiss me back when I kiss her or when I ask her to.  To kiss me as she did last night, for no apparent reason other than because she wanted to – it was one of those moments – a indescribably beautiful, touching, magical, moment.  I looked over at Richard.  “Did you see that?  Did you see that!?  She kissed me!”

I looked back at Emma, “Thank you Emmy.  I love that!”

She beamed at me and said, “Kiss Mama.”

And then I held her and I wept.

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The Playground

Posted on April 26, 2010 by | 1 comment

I use to take the children to a number of playgrounds in the city when they were young.  We went to Union Square Park (before the renovation), Washington Square Park, Seal Park which is way over on 10th Avenue between 22nd & 21st Streets, Madison Square Park and Triangle park (a little playground nestled in the triangle created by Hudson becoming 8th Avenue.  There were others, but these were the ones we went to more often than not.  Washington Square was a particular favorite because of the large sand box and there was a smaller playground close by for younger children, where we would stop, on our way home.  In addition there was the huge water fountain in the center of the square and when the weather was very hot, the children loved to splash around in it.

One summer day while at the playground in Washington Square, Nic was playing in the sand box with his trucks and Emma wanted to swing.  Typically there were lengthy lines for the swings, particularly in the mid morning and mid afternoon.  I learned to repeatedly remind Emma she would have to wait for the swing, something she seemed increasingly unable to do.  More and more frequently I would have to pull her from the ground where she had crumpled in a sobbing heap and strap her into her stroller kicking and screaming to leave the playground with Nic, reduced to tears, in tow because she refused to wait in the line.  Anyone who has spent time with small children in a playground knows cutting in line for the swings is tantamount to declaring war on the other parents and children.

On this particular day we were waiting I counted each time a child vacated a swing.  “Okay, Emma, five more children ahead of us.  Remember we have to wait.  Let’s count. “  And then I would count while Emma stared fixedly ahead.  Eventually when it was Emma’s turn she leaped onto the swing and waved me away so that I couldn’t push her.  I stepped back, wondering what she would do.  Then with her feet scuffing the ground she pushed off and began to pump her legs.  It was amazing to watch such a little girl able to swing herself.  A small crowd of moms and caregivers gathered around, watching.  One of them asked, “How old is she?”

“Eighteen months,” I replied, as Emma soared high in the air and back down again.

Much later I learned many autistic children have what are termed splinter talents.  Things they are good at, though they remain delayed in most other things.  Emma has always been coordinated even though she began walking late – at fourteen months – and needs more time than a normally developing child to learn things.

But on that warm summer day, Emma found something she was able to do, and do really well.

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From Emma’s Granma

Posted on April 17, 2010 by | 6 comments

“I have four grandchildren, and the youngest is Emma.  She is a beautiful blond with blue eyes and a sparkling smile, she skis like a pro, she swims, she climbs the climbing wall at the rec center, she balances on the back of the sofa (while her granma shudders in fear that she might fall), she sings with near perfect pitch, and she is autistic.  When I was growing up such children would have been hidden away.  Anyone who encountered them would have avoided them, other children would have teased them, or worse still, abused them.

My husband spent the last ten years of his life in a wheelchair.  He told me that in social gatherings people avoided him because they didn’t know what to say to someone who was so obviously disabled.  Today men and women in wheelchairs compete at the Olympics.  They race on prosthetic limbs, those who are blind ski with Challenge Aspen.  I have a friend, one of the founders of Challenge Aspen, who skis in a specially designed chair.  She tells me that she skis better now in that chair than she did eighteen years ago when she had full use of her limbs.

Scientific research, skilled therapists and loving families have helped all these people achieve a potential that would have been denied them eighty years ago when I was born. These people are actually lucky because their disabilities are visible, and so scientists and skilled therapists have been funded with the means to investigate all avenues that might lead to improving their lives.

Autism is not visible, but inside of Emma there is also a person yearning to be understood, to be able to communicate, to tell us of her fears, her frustrations, her desires.  She too wants to be  treated with understanding and compassion.

In the family room we have a stage with a curtain.  Emma loves to draw back the curtain and sing and, as her father says, strut her stuff as if to an enormous audience.  One day she too will reach her potential.  One day she will step down from that stage, her inner person will emerge, and she will still sing like an angel, but also she will speak with clarity, she will laugh with us, play games with other children and be able to step off into the future with confidence.

Such is our hope.

But even if none of that turns out exactly as we might wish, one thing is certain, wherever she goes, however she behaves, she will walk in beauty, surrounded with love.”

To see a survey that my mother participated in on the effects of autistic grandchildren and their grandparents, go to:  http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_apr_2010

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The Big Piano

Posted on April 14, 2010 by | 1 comment

I was just reading Ariane’s post about the toy store and it made me think of some of my own experiences. When we go to the big Toys R Us store in Times Square it’s the same deal — she can walk by aisles of Barbie dolls and Dora the Explorer toys without even a glance at anything. Instead she’ll head straight to the big ferris wheel.

FAO Schwarz is one of her favorite (and compulsive) stops on any trip to Central Park.

“Go to carousel. Go to zoo. Go to FOShwarz. Go to Apple store. Take the train, go home,” she’ll say on our way out the door on a Sunday afternoon, reciting her agenda and expectations for the day. At FAO she will immediately head to the hackysack kiosk, not to play with anything or watch the other kids playing, but to watch herself in the video monitor.

From there we head upstairs to the big piano and she’ll easily spend an hour running back and forth across the keys. Occasionally she’ll look at a train set afterward, if she can control the button that makes it stop and start.

We passed a toy counter filled with stuffed Sesame Street characters and I tried to engage her interest.

“Who is this Emma?”
“Cookie monster.”
“And who is this?”
“Big Bird.”

She had no interest in any of it but at least she answered the questions. And so it goes. The one exception:

Sometimes when we pass the section with the frilly princess dresses, she will stop and hold one up and say, “Pretty dress.”

And if it’s really pretty, she might add, “Get it daddy.”

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Toys

Posted on April 14, 2010 by | Leave a comment

When Nic was a toddler, I would frequently take him to our favorite local toy store, Kidding Around, where he would play with the elaborate train set, Tina, the owner, had in the back of the store.  Very popular with the four and under crowd, particularly in the afternoons, we would go in the morning and often, Nic would have the train set all to himself.  Each day of our visit when Nic was just beginning to talk, he would point to something as we were leaving, “That!” he would say, which meant he wanted to take it home with him.

When Emma was about the same age, I took her to Kidding Around, but nothing caught her attention.  I tried to entice her, “Look Emma!  What a pretty doll!  Do you like it?”

She ignored me and wandered off.

Undeterred I went over to the two wooden tree stands filled with large plush hand puppets.  They were lovely and soft, in bright colors and came in a variety of different species, toucans, leopards, dogs cats, horses, as well as mythical creatures and monsters – a favorite of Nic’s.

I thrust my hand in one, a beautiful white unicorn with flowing mane and purple horn, “Emma!  Look!  I’m a unicorn,” I said, in what I imagined a unicorn’s voice would sound like if they existed and could talk.

Emma showed no interest.

The one toy Emma was attracted to was the miniature doll’s stroller, which came in pink and blue.  I placed a baby doll in one of them when I saw her looking at it.  “Look Emmy it’s for the baby doll,” I said.

Emma pulled the baby doll out of the stroller and proceeded to try and sit in it herself.  Terrified that she would break it, I said, “No Emmy!  That’s not for you!  It’s for the baby doll.  You’re too big for this stroller.” Again I placed the doll into the stroller.

Emma threw the doll onto the floor, took hold of the doll’s stroller and careened around the store, heading toward the door.  I chased after her and herded her back inside, admonishing her that she couldn’t go out into the street.  Each time we returned to Kidding Around, out the door she would tear, steering the doll’s stroller around, and a few times into people who were in her path.  It got so that I would block the front door while Nic played in the back, every now and again his little voice calling out, “Mommy!  Emmy’s taken the stroller again!”  I would position myself in front of the only exit, while she would try to maneuver around me, fixated on getting that stroller and herself outside.

“She just doesn’t like toys,” I reported to Richard that evening.  “My sister never played with dolls,” I said when he didn’t say anything.  “Emma’s athletic, just like my sister,” I finished, unsure of why I suddenly felt so defensive.

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The Beginning

Posted on April 7, 2010 by | Leave a comment

“Does she ever point?” the evaluating psychologist asked us one day toward the end of another grueling session where Emma was suppose to play with a series of plastic ‘nesting’ cups.  Emma showed zero interest in the nesting cups or, for that matter, in any of the other dozens of toys the woman had brought with her.  Richard and I looked at each other and slowly shook our heads, no.  “Is that important?” I remember one of us asking.  “Yes, a typically developing child will always point to things that they are either interested in or want to know the word for.”  I will never forget that instant as it became a defining moment in the evaluation.  The evaluation that ended in a diagnosis of PDD-NOS when Emma was two and a half .

It had been only a month before – August of 2004 when Emma stopped speaking almost completely.  She had begun to slide more and more into her own world which did not seem to include any of us.  Her interest in anything ‘outside’ diminished. But she seemed to have a busy internal life, one that we were not privy to, nor able to share with her.  I dealt with the diagnosis with my usual pull-up-your-boot-straps-let’s-figure-this-thing-out-and-fix-it attitude.  I come from a long line of strong, independent women and this was the mode I fell into.  The first thing to do, I thought, was find out what autism was.  I had no idea, my only reference was a mixture of “Rain Man” and some books I had read as a young adult, which posited that the mother was ultimately to blame and that autism was the child’s emotional response to an unloving, controlling mother.  Undaunted, off I went to the book store where I spent hours reading.  The first book was about a woman living in New York City whose child was diagnosed with autism and so she adopted a vigorous program of ABA therapy, hired a young girl to help her and after a few years, the child was normally functioning and off to a main stream school.  Another book recommended a casein/gluten free diet.  I remember talking with one of Emma’s early intervention therapists who said she thought Emma would be mainstreamed by the time she was in kindergarten.  I had it in my mind that we were in for a few tough years, but with perseverance and a great deal of hard work, we would see this thing through.  I can do this, I thought and when it was all behind us, we would look back with a smile and say, “oh remember when..”

But ABA did not help Emma.  She has a phenomenal memory and memorized all 400 of the ABA flash cards, but when presented with a similar object, one that she knew from the flash card – such as a blue t-shirt – yet if I held up a blue blanket or one of her blue shirts, she could not tell us what the color was.  It became frighteningly clear that Emma could not generalize the information.

Back to the book store I went, returning home with an arm load of new books on autism.

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