Tag Archives: children special needs

Mommy & Me Class

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.

A Tribute To Stanley Greenspan

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

From Joe (Emma’s Therapist for the Past Five Years)

Joe, Emma’s therapist, who came to us five months after we received her diagnosis, was initially trained in ABA (Applied Behavioral Analysis).  As Emma regressed using ABA, Joe was the first to agree with us that we should find another methodology which might work better.  When we found Stanley Greenspan (who died April 27th, 2010 – next post will be a tribute to him) Joe was an eager participant in learning how to do Stanley Greenspan’s DIR (developmental, individual-difference, relationship-based) therapy with Emma.  Joe has since become the “Zen Master” of DIR.  He is brilliant at it and watching him work with Emma is a profound experience.  The following is a post by Joe.

“I was watching ABC’s Nightline last night, which aired a story about a pro-surfer who has autism. Watching his intensified focus on the waves certainly reminded me of Emma’s physical grace and all of her athletic talents – skiing in particular. They described the teenaged surfer as someone who’s “mastered the seas but still struggles on land.” On the water he feels relaxed, but on land he must face the pressure and anxiety of social interactions. Like Emma, the surfer has no physical indication of any disorder so his inability to respond appropriately to social interactions (or simply say hello) is often interpreted as rudeness. This is one of the dozens of catch 22’s of autism – wanting her to be seen and treated just like anyone else but also expecting others to be understanding/non-discriminatory once they find out she’s autistic.

The surfer’s story ended by crediting his autism for opening this door for his talents to shine: a door which may have otherwise remained shut.  While Emma’s autism has come with its vast array of difficulties and challenges, it has also opened similar doors for her talents to shine. While I feel many of Emma’s abilities are innate, I believe a stage needed to be set in order for them to be unveiled. So I end this story by crediting Emma’s parents, Ariane and Richard, for all of their endless efforts to open every door and set every stage possible for her. As for her athletic talents, giving her the opportunity to swing herself at 18 months, getting her into gymnastics at 2 years old, and strapping her into skis at 3 years old is just a fraction of all of the sensory input she was constantly provided with at such an early age. While Emma continues to shine in the spotlight, I credit her director and choreographer, Ariane and Richard, for making it happen.”

Misconceptions Regarding Autism

Denis Leary made a stir in 2008 when he made public his belief that autism was caused by “inattentive moms and competitive dads”.  His comments echoed Bruno Bettelheim, who in the 1950’s posited autism was caused by emotionally distant mothers whom he referred to as “refrigerator moms”.   While Bettelheim’s theories were largely rejected in the 1960’s, there remains confusion by many people when confronted with an autistic child.   My guess is many people believe autism is a psychological problem as opposed to neurological.  As my mother so beautifully wrote in her post From Emma’s Granma autism is largely invisible.  Because of this, people often assume the child is behaving badly because they are spoiled and the parents are unaware or worse, condone the bad behavior.

Several years ago, Joe, Emma’s therapist, was with Emma in the park when she fell to the ground screaming she wanted to ride the carousel one more time.  Joe, knowing Emma needed to be back home, told her it was time to go.  Emma refused and sat in the mud in her pretty dress crying and screaming.  A group of women stood nearby, watching with looks of shock and concern.

Emma continued in full melt down mode repeating over and over again, “I want to ride on the carousel!”

One of the women asked Emma if she was okay.  When Emma didn’t respond, Joe tried to physically pick her up, thinking she might calm down once he was holding her.

Another woman in the group yelled at Joe, “Don’t touch her!”

“You have no idea what’s going on here,” Joe said, trying desperately to get Emma to cooperate.

“I’m calling the police,” the woman said, pulling out her phone.

Figuring there was nothing he could say or do to make the women understand, he finally was able to pick Emma up and carry her out of the park.

The group of women followed Joe for the next ten to fifteen minutes.  At which point Emma was calmer and Joe was able to get her into the subway and home.

When Joe arrived back at the house, he was visibly shaken.

All of us who have spent time with Emma over the years have experienced versions of Joe’s experience.  I remember being in a playground in Central Park with Emma one weekend.  It was crowded and Emma was having a tough time waiting for her turn on the swing.  Each time one became empty she rushed forward, trying to grab it.  I ran after her, explaining that it wasn’t her turn yet.  Finally one of the father’s of another child turned to me and said, “Hey!  Can’t you control your kid?”

“She’s autistic”, I said.

Before I could explain further he interrupted me and said, “Yeah?  Well my kid likes to paint too.  Who cares?!”

Confused, I said nothing, but as I led Emma back to her place in line I realized he had misunderstood me and thought I’d said, “artistic”.

It became a running joke at our house whenever any of us didn’t want to do something we’d say, “Hey, I’m artistic.”

From Emma’s Granma

“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

The Big Piano

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.”

Toys

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.

Talent Show

I was listening to Emma and Lee singing ‘Que Sera, Sera’ after Ariane posted it and was moved to tears as I always am when I hear how heartbreakingly pure and sincere her voice is. It is so sweet that I can’t think of any word to describe it other than angelic.

I first played her ‘Que Sera Sera’ on You Tube about two years ago after hearing a slow and somewhat melancholy version of the song in a Francis Ford Coppola film. I’ve always loved this song, even in the brighter Doris Day version, which Emma prefers, though the way she sings it brings out the poignancy of the lyrics and melody in a way Doris could never even dream of.

Emma has near-perfect pitch and a set of lungs an opera diva would envy. But so much more powerful and affecting than those qualities is the sheer sweetness of her voice, like everything that was good and kind and happy and wonderful in the world was distilled in a golden elixir that pours out whenever she sings that song.

Most of the time, her singing is loud and raucous, though no less heartfelt and touching in its own way, at least to my ears. Emma loves to perform, though there isn’t any trace of ego in her desire to strut her stuff. I guess that’s part of her condition to some extent, a reduced sense of self.

Last night before bedtime she said, “Talent show?” very loudly while I was playing chess with Nic.

“Sure Emma, we’d love a talent show,” I replied, smiling at Nic who smiled back with a “here we go again” sigh and headshake that seemed to sum up all his conflicting feelings – amusement, love, frustration, exhaustion, mild embarrassment. There was no one else in the house, so I’m not sure he felt any embarrassment, other than perhaps a conditioned response to similar, more public displays.

Myself, I was very much looking forward to the show, which turned out to be a medley of Carole King songs for children, culminating in ‘Chicken Soup with Rice’, which she belted out like a Broadway veteran. She always goes for the big finish and this particular song jumps up an octave or two at the end. She totally nailed it. Nic and I laughed and I applauded as loudly as she sang.

People often ask me whether Emma has any special talents. When anyone asks a question like that I figure they’ve been watching “Rain Man” and want to know if she has any savant abilities. I usually say that those types of abilities are associated with what has traditionally been called Asperger’s Syndrome – though I recently read that the medical community wants to abolish that term and use ‘Autistic Spectrum Disorder’ for everyone.

After that disclaimer, I will typically add that she does have an incredible memory and will mention things that happened to her when she was two or three years old. She can also remember very specific catalogues of objects, particularly photos. She really likes photos and home movies – I think they help her talk about and identify people, things and activities she enjoys. She has a shoe box with 100 or more photos inside and she will know instantly if one is missing, setting off a frantic household hunt for the lost picture in order to stave off a total meltdown or some self-injurious behavior, like biting her arm as hard as she can.

She is also extremely advanced in a wide variety of physical activities: skiing, climbing, balancing, jumping, swimming.
And of course, she loves to sing and dance.

There was an award-winning documentary that came out a while back called ‘Autism: The Musical’. It was a very inspiring movie and we thought this might be something Emma would enjoy given her showbiz leanings. When they started a program called ‘The Miracle Project’, based on this concept at her special ed school, we enrolled her and are very excited to see what might come out of it.

Every year at her school they have a talent show and every year, Emma has been the star of the show, soloing in ‘A Spoonful of Sugar’ from Mary Poppins in her debut performance.  Since then she has referred to any of her singing performances as a talent show, which I love. I bought her a number of karaoke video games with microphones but she has been much more enthusiastic about singing along from memory to a DVD or You Tube clip. She has quite an impressive set list for her concerts now, which routinely take place at birthday parties or dinner parties (which are also birthday parties as far as she’s concerned), or whenever the mood strikes her. An audience of one or two is enough, though like most performers she likes to play a full house.

I’ve always thought that she’s a total rock star and someday she’ll be cranking it up on a big stage – leaving our ‘dinner theater’ circuit far behind. Time will tell. For now, I revel in her impromptu serenades and every time she says, “Talent Show?!” my heart skips a beat in happy anticipation.

The Beginning (Cont’d)

Some of the books I read:

Let Me Hear Your Voice: A Family’s Triumph over Autism by Catherine Maurice

*Nobody, Nowhere by Donna Williams

*Emergence:  Labeled Autistic by Temple Grandin

*A Slant of Sun: One Child’s Courage by Beth Kephart

*An Anthropologist on Mars by Oliver Sacks

Maverick Mind by Cheri Florance

A Parent’s Guide to Autism: Answers to the Most Common Questions by Charles A. Hart

The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders by Bryna Siegel

Handbook of autism and Pervasive Developmental Disorders by Donald J. Cohen & Anne M. Donnellan, ed.

Biological Treatments for Autism and PDD by William Shaw, Bernard Rimland, Pamela Scott, Karyn Seroussi, Lisa Lewis & Bruce Semon

Special Diets for Special Kids by Lisa Lewis

*Sensory Integration and the Child by Jean Ayres

Teach Me Language: A language manual for children with autism, Asperger’s syndrome and related developmental disorders by Sabrina K. Freeman, Lorelei Dake & Isaac Tamir, illustrator

*Engaging Autism by Stanley Greenspan

*The Child with Special Needs by Stanley Greenspan

*Denotes books that were very helpful and continue to be

When I wasn’t reading books on autism and canvassing the internet reading the endless array of therapies being offered, each with it’s own little morsel of hope attached –  perhaps this will be the thing that she responds to – I was scheduling Emma’s early intervention therapists.  There were often 7 therapists in a single day, coming and going.

I look back on that period and wonder what it must have been like for Emma.  How odd it must have seemed to her, but she took it all in stride.  There were a few exceptions, the days when I would sit outside her bedroom door during her therapy, leaning my head against the wall listening to her scream as she tried to leave the room, but the therapist would patiently tell her she could not until they had finished and I would cry, fighting the urge to let her out – all that separated us was the four inch wall of her bedroom.  I remember feeling that everything I thought I knew as a mother – all my maternal instincts were useless.