Category Archives: Stanley Greenspan

Overwhelmed

Posted on May 15, 2012 by | 20 comments

Overwhelmed.  That’s how I’m feeling at the moment, with no real right to be.  Nothing has happened, Emma continues to make nice strides, yet even as I say that, a little voice is muttering, “Really?  Is she really making strides or are you just grasping at straws to make yourself feel better?”

Sometimes I just want to rant and whine and complain, yet as I write this, I know that’s not really what I want.  Okay, maybe a little. But it’s more the feeling of wanting to turn the volume down in my head.  If they had a worry lobotomy I think I’d sign up.  Or maybe that’s what a lobotomy is.  I just don’t want all that other nasty stuff that comes with a full lobotomy, just take the worries away, thank you very much.  What I really want is to not feel this way.

When Emma was diagnosed and still two-years old I remember after a long training session in which Richard and I were supposed to continue with her ABA program after the seventh or eighth therapist left our home for the evening, I thought – I don’t want to be my daughter’s therapist.  I want to be her mother.  Being her mother doesn’t seem to rate high on the importance scale of most of these methodologies.  A few years later when Richard and I went down to Bethesda and trained with the late Stanley Greenspan in his DIR/floortime, I felt the same way.  After Stanley advised us that we should each be doing seven or eight 20 minute floortime sessions with her a day, I thought – I don’t want to run interference, constantly launching questions at her to encourage language like rounds fired from a .44 magnum.  (Yeah, I just googled that, because I’m completely insane AND a stickler for accuracy in the similes I use.)

The point is – if I’m being perfectly honest – I’m feeling a little lazy at the moment.  But laziness with an autistic child is really not something I can afford to be.  I mean her life is hanging in the balance while I’m whinging about how I don’t want to take the time to map out her next study session.  (Don’t you love it when people use words such as “if I’m being perfectly honest,” and “frankly” and “truthfully” or my personal favorite, “if truth be told” ?  To preface a comment with “Truthfully” implies that one is NOT usually truthful, which, for some reason, strikes me as hysterically funny.  Okay.  I’ve had my moment..)

I know that feeling of overwhelm is like fear, or worry or any number of other emotions that do nothing positive, in fact serve only to keep me deeply embedded in the stagnating cycle of fear and worry, like air that’s being recycled through a dirty filter.  (Stop with the similes!  This should be said in a high pitched Monty Pythonish voice.  But I can’t help myself!)  I know the only way to break out of this is to do the thing I keep putting off doing.

Just do it.

I know.  I know.

I think I’ll go make a list.

It will be a very long list.

I hate long lists.

Ugh.

To read my latest piece, Emma’s New Shoes, in the Huffington Post, click ‘here‘

And if you haven’t already done so, do vote for Emma’s Hope Book by clicking this ‘link‘ and clicking on the “like” button opposite Emma’s Hope Book.

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Posted in ABA, Autism, Parenting, Stanley Greenspan

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Family

Posted on August 24, 2010 by | Leave a comment

When Richard, Joe and I took Emma to Costa Rica for her first round of stem cell treatments this past March, we arranged to have Alycea stay with Nic.  Alycea is one of those people who is multi-talented; a musician-singer- songwriter, terrific with both children, with an unbelievable upbeat-can-do attitude.  So when we explained to Nic he could either come with us to Costa Rica or stay in New York with Alycea, he didn’t hesitate in saying, “I’d rather stay with Alycea.”

And he had a blast, though there were logistical hoops we had to go through to get him to Denver where we met up with him and Alycea before we continued on to my mother’s.

Upon our return from Costa Rica, my mother said, “Next time you must leave Nic with me.” She said it more as an announcement than anything else.

“But Mom, are you sure?” I asked.  After all she is 81 years old with degenerative disk disease and though she and Nic have a special relationship, I wondered just how she would manage.

“Yes.  I’m sure,” she said, with the authoritative tone used by someone of a certain age – in other words – there would be no further discussion.  “He might like to go visit your sister Toni,” she added brightly.  “I thought we’d drive down with the dogs after you leave,” she said.

My sister operates a working ranch with free-range pigs, sheep, lamb, chickens, a number of ornery roosters and that’s just naming the non-domesticated animals.  In addition she has four dogs, horses and I’m sure, upon this post she will have acquired new animals I have failed to mention.  I can just hear her as I write, “Ariane!  I can’t believe you forgot the __________________!”  (Fill in the blank of some rarely heard of species belonging on a ranch.)  In summary her ranch is a ten-year old boy’s version of heaven.

About a month after it was decided Nic would stay with his Grandma, I heard from one of my three brothers, Victor.  He and his wife, Susan had decided they would also come out, “to help with Nic”.  As it turned out another brother, Andy and his fiancé were planning a trip to Colorado during the same period.  Andy is on Nic’s top ten list of favorite people.

So it was with a certain amount of mental freedom that I boarded the first airplane on my way to Panama to meet up with Richard, Emma and Joe three weeks ago.  I knew Nic would be well taken care and the removal of that particular concern was deeply appreciated.

When we returned from Panama, Nic greeted us with countless tales of Wilbur the several hundred pound boar, the pigs, the lamb, the dogs and all the various adventures he had had while we were gone.  Not once did he mention missing us.  Why would he?  He had been surrounded by my siblings, their significant others and my mother – who should be sainted – for the entire week.  If anything, Nic had a difficult time adjusting to our return as his carefree week of animals and family came to a screeching close.

Victor and Susan extended their stay so they could be here for my birthday festivities, which meant Emma was able to spend a week with them upon our return from Panama.  Emma has always loved Victor and Susan and they return her love. During the winter we over lap for the Christmas Holidays and Victor and Susan make sure they spend a few days skiing with Emma.  When we return to New York Emma asks after them for several months.  We know she misses them.  To also spend time with them during the summer was an added bonus.  Emma was overjoyed, as was I.

“Victor and Susan tomorrow!” Emma said after they left a few days ago to return to their lives in Illinois.

“No, Em.  But we’ll see them over Christmas,” I said.

“See Victor and Susan later,” Emma said. Her way of conveying how much she wants to see them and wishes they were still in Colorado with us.

“Yes, over Christmas.”

“Ski with Victor and Susan,” Emma said, showing she understood.

“That’s right, Em.  You can ski with them.”

“Victor and Susan tomorrow?”  Emma said sadly.

“Do you miss them?” I asked.

“Yeah,” Emma said.

Later that day as my mother, Emma and I were out walking the dogs, Emma said, “Say hi to Victor?”

“Sure Em, good idea.  I’ll send him a text and you can say hi to the camera, I’ll text the photo to them.”

Below is the photo I took as Emma said, “Hi, Victor!”

Richard and I realized early on we needed help if we were going to give Emma the support she needed to make ‘meaningful progress’ as Stanley Greenspan use to say.  We realized her needs were greater than our ability to provide them on our own.  When we made the decision to start doing stem cell treatments, the help we required multiplied.  My family jumped in unasked, voluntarily and cheerfully.  My siblings and mother joining forces so Richard and I could take Emma for her second round of stem cell treatments without worrying about our son was an act of kindness above and beyond the call of familial duty.  It is my family and our close friends who have helped us help Emma.  We could not have done or continue to do as much were it not for them.  Because of my good fortune in having such an amazing family and friends who have given of themselves so selflessly time and again, I feel all the more determined Emma should be given the opportunity to have a life, which includes deep friendships.  That she may one day know the indescribable joy of connecting with family and friends is my hope for her.

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Joe

Posted on July 26, 2010 by | 4 comments

Yesterday Richard, Emma, Nic and I went to a post wedding party for Joe, Emma’s therapist and Joe’s wife, Angelica.  It is always interesting going to a function together as we never know how Emma will behave.   Will she have a meltdown?  Will she insist on leaving right away?  Will she be so utterly unmanageable that we spend the entire party racing around after her?  When it is a dressy affair, one with speeches and food, which she will have no interest in, it becomes all the more worrisome.  We knew we had a better chance things would go well by the very fact that this was a party for Joe and Emma adores Joe.

Still, we did our best to prepare her before we left.

“We are going to get dressed up, then take a taxi and see Joe!” We told her.

“See Joe!” Emma repeated, nodding her head and twirling in place.

“That’s right Joe and Angelica,” I said.

“It’s a birthday party,” Emma concluded.

“No.  It’s Joe and Angelica’s party celebrating their marriage,” I said, not sure how else to describe a post wedding brunch.

“A wedding-birthday party,” Emma said.

“Well, sort of.  But it’s to celebrate their getting married,” I explained.

“Okay,” Emma said.

“There’s going to be food there and lots of people…” I said.

“And Joe and Angelica!” Emma interrupted me.

“That’s right.  Joe and Angelica will be there.”

“Angelica!  Angelica!”  Emma sang as she twirled in place.

“And there will be a few speeches and we will see a video and then we will come home and change,” I continued.

“Go to Chelsea gym bowling,” Emma said.

“Yeah.  Okay.  We can go bowling at Chelsea Piers afterward,” I said.

“Go with Mommy and Nickey and Daddy,” Emma said.

“Exactly,” I said.

“Okay!  Emma put on a party dress,” Emma said.

“Yes,” I said.

The party was lovely and Emma was terrific, on her best behavior.  Joe’s niece was there, an adorable two-year old in a party dress similar to Emma’s.   They ran around together, though in truth it was Victoria’s exuberant friendliness, undeterred by Emma’s less than attentive response to her, which kept their interactions going.  If Emma sat down, Victoria sat down next to her.  When Emma took her shoes off, off came Victoria’s shoes.  When Emma ran around the room waving her arms, Victoria followed waving her arms as well.  It reminded me of how neuro-typical children behave.  They follow the older child and often mimic them.  Emma never did that.

People ate and chatted with one another.  Both Nic and Emma ran around with the two other children there.  Then Joe stood up to give his speech.  Emma sat down and remained quiet as he spoke.  It was a heart felt speech, incredibly moving and left many of us in tears.

When it was my turn to give a speech, I pulled out my notes.  I had decided, when considering what to say, that perhaps I would use at least some of my time explaining exactly what it is Joe does.  I think it’s easy for people who know nothing about autism to assume he is a glorified babysitter.  Someone who hangs out with Emma and takes her to the park.  This could not be farther from the truth.

When Richard and I went to Bethesda to train in the DIR/floortime method with Stanley Greenspan, who invented it and his son Jake, we were exhausted before the day had ended.  Attempting to engage and evoke language from an essentially non-verbal child who is uninterested in any form of interaction is like nothing I have ever done.  It is physically and emotionally exhausting.  It requires a creativity, quick-thinking, concentration, focus and patience most people simply do not have.  Richard and I have met hundreds of therapists over the years, some have it and many more who do not.  The idea that anyone can effectively work with autistic children is just not true.

Joe is the ninja master, the autism whisperer.  He has a talent for it, an intuitive sense, which I have had the pleasure of observing many, many times.  Joe is not just a gifted floortime therapist, he is also a well trained one.  It is a formidable pairing.

And yet, what I have witnessed time and time again is how Joe and others like him are undermined, their work is seen as little more than babysitting, their profession consistently undervalued.  Devoting ones life to helping children with special needs is a noble calling.  Joe is royalty among the noble.

It was with these sentiments that I rose to give my speech.  I cannot say I got through it flawlessly because I did not.  I stumbled and I had to refer to my notes, I choked up several times and at one point had to stop speaking, as I was completely overwhelmed with emotion.  But mostly I wanted others to understand the importance of what Joe does everyday.   Joe has transformed Emma’s life in untold ways.  His commitment to her, his dedication to her has formed who she is and who she will become.

One story I forgot to mention yesterday was when we were having a hearing with the Board of Education.   Joe had testified as to what he does with Emma.  Richard and I had also testified regarding Joe’s contribution.  During the final cross-examination by our attorney of the attorney for the Board of Education regarding some of her arguments, she looked up from her notes and said, “Well I don’t know.  I’m not a Joe Kennedy.”

When I am with Emma during one of her legendary meltdowns I am fortunate if I have a momentary reprieve when I am able to ask myself – what would Joe say or do in this situation?  The times when I am able to emulate Joe are the times I know I’ve done the right thing.

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Posted in Autism, DIR - Floortime, Parenting, Siblings, Speech, Stanley Greenspan

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

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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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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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