Tag Archives: DIR/floortime

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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From a Mom in Melbourne

Posted on January 24, 2012 by | 2 comments

The following is a comment from the “Redefining Autism” post written by an Australian mom with two children on the spectrum.

“It is what our education department in Victoria does.  They make it so hard for children to qualify under their own made up criteria for what they will actually fund as being autism.  One of those being a severe language delay.  Problem solved, then they just don’t count all the students with an actual diagnosis of autism only those they will fund at school.  They also don’t count the children in my region ( my own 2 included ) who have severe autism, but attend schools for the intellectually disabled.  If you attend such a school you are funded as intellectually disabled and not autistic and so they do not count you in their figures as autistic, never mind where we live, unlike the rest of the City, there are no autism specific schools beyond the age of 9.  Such schools are zoned, so even if we could travel there we wouldn’t be accepted as the schools are so full.  If you can’t survive in a mainstream school with minimal support you wind up in a special school for the intellectually disabled or homeschooled.

We just had a review of autism education provisions for our region, which I was involved in instigating and the Education Department again only released the figures of those students who recieve funding for autism.  It is wicked, given that this region of Melbourne has the highest incidence of autism, but we will never know just how frighteningly high because they only count some students not all those with a medical diagnosis.  One local politician described it as a tsunami.

I read the article you mentioned a few days ago and it is just more of the same.  There is an epidemic – I can see it.  My husband has work mates who have children with ASD, we have friends we knew before they had kids who now also have children with autism, we have a neighbourhood full of kids with ASD, wherever I go – restaurants, swimming pools, shopping, the library – I see children who are obviously autistic.  They can call it what they want, but it isn’t going away.”

Emma was diagnosed with PDD-NOS  (Pervasive Developmental Disorder – Not Otherwise Specified) at the age of two years and nine months.   Given the new criteria proposed, Emma would not have been eligible for the services she was given, which included speech therapy, occupational therapy and Applied Behavioral Analysis (ABA) as well as Verbal Behavior  (VB).  While I take issue with the standard form of early intervention – ABA & VB – as it did not help Emma, we were able to find an early intervention therapist versed in Stanley Greenspan’s DIR (Developmental, Individual-difference, Relationship-based) model, which was at least a bit more helpful.  I have no idea whether Dr. Marion Blank’s program for children would have been covered had we known about it, but it might have been.  Had we begun Emma on Dr. Blank’s program when she was first diagnosed, we would undoubtedly have a child who was now mainstreamed, saving the state and ourselves an enormous amount of money, not to mention heartache, stress and emotional trauma (hers, as well as ours).  I say this with confidence because now, at the age of ten, Emma has made more progress in the past year that we have been working with Dr. Blank than she has in six or even seven years put together.

My distress is two-fold regarding this new proposed criteria and the ongoing discussion regarding autism.  The first is that shifting numbers will not change the fact that the rate of autism has far outpaced our ability as a society to cope with it, and secondly, the standard way of treating autism – ABA and VB being the gold standard, needs to be reanalyzed with better and more stringent studies.  There are a great many children whom ABA/VB have not helped who can be helped with other methodologies.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

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Posted in ABA, Autism, Dr. Marion Blank

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Desperation & Coping (Part Two)

Posted on September 10, 2010 by | Leave a comment

For the first two years after Emma was diagnosed we did an aggressive intervention of ABA (Applied Behavior Analysis) therapy – 40 hours a week with additional speech therapy and Occupational therapy.  Advocates of ABA believe it is the only therapeutic intervention for autism that has any scientific validity.  Others have questioned those studies, claiming Lovaas used only the highest functioning children to obtain his results, which were published in 1987.

Regardless, ABA did not help Emma.  In fact, she “flat lined”.  We were called into the principal’s office of the pre-school she was then attending and were told Emma’s lack of progress was a “red flag”.   While other children at her pre-school flourished, going on to be mainstreamed even, Emma stalled out, unable to generalize the things she learned in the classroom setting, unable to make progress.  I have spoken to dozens of parents whose children have been helped using ABA, parents who swear it was the single most important thing they did for their child, and yet, for Emma, ABA did not help.  It is easy to feel angry, blame the therapy, blame the child, blame something rather than acknowledge how baffling and insidious autism is.

It was around this period when we found Stanley Greenspan and began his DIR/Floortime therapy with Emma.  For more on Stanley Greenspan see “A Tribute to Stanley Greenspan”.

While Emma responds much better to the DIR model, she still continues to confound experts in the field.  She has not progressed as quickly as any expected or hoped.

When Emma was first diagnosed we were given a diagnosis of PDD-NOS.  We were told to watch her, that perhaps she would “grow out of it” or if not, then at least we would have begun an aggressive early intervention program which would undoubtedly have her mainstreamed by the time she was in kindergarten.  This was not to be, however.  Emma was not mainstreamed when she reached the age to enter kindergarten.  In fact, her diagnosis changed to “Autism” and though she was considered “mildly” autistic, by the time she was 7, she was categorized as moderately so.  How to explain this?

We cannot.  None of the “specialists” we’ve seen can either.  The only thing that has really changed is all those “specialists” no longer offer their long-term view of where she’ll be in another few years.  Gone, are the comforting talks of how she’ll soon be mainstreamed, no longer do we hear the cheerful prediction that she’s – “on her way”.

Desperation can make for odd decisions, but for those of us who have attempted to manage our feelings of overwhelm as we do our best to live our lives with an autistic child, it is a feeling we are all too familiar with.  Richard and I have tried any number of remedies. Were I not the mother of an autistic child I would respond to many of the very things we’ve tried with an incredulous shake of my head.  When someone tells me their child has had several hundred treatments in a hyperbaric chamber, I do not think – Poor fools, they really are clutching at straws – I take notes.  How could anyone believe ____________________ (fill in the blank) would work?  We don’t believe as much as we hope.   We will do anything we can to help our daughter.

Desperation?  Probably.

Coping?  Absolutely.

Emma – August, 2010

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Posted in ABA, Autism, DIR - Floortime

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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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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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Posted in Autism, DIR - Floortime, Rebecca School, Stanley Greenspan

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The Beginning (Cont’d)

Posted on April 8, 2010 by | Leave a comment

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.

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Posted in Autism, Parenting

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