Category Archives: Parenting

A Zen Koan

Posted on September 28, 2010 by | 3 comments

Living with an autistic child, forces one to “think out of the box.”  Emma’s mind is, to a neuro-typical person, a tangled web of odd phrases, misplaced pronouns, questions posed that may be statements or may be questions, interchangeable tenses, words used literally within non literal contexts.   I often find myself feeling I have been given a Zen koan when I’m with Emma.  For those who may not know what a koan is, it is a non-answerable verbal puzzle.  One of the most famous Zen koans is:  Two hands clap to make a sound.  What sound does one hand make?  The answer is – there is no answer and if you attempt to verbalize one you miss the point.

Emma’s behavior is often perplexing, her speech difficult to decipher, her desires often impossible to understand.  And just as with a Zen koan, if one attempts to apply intellect and reasoning to Emma’s actions, one will have missed the point.  My best, most joyful moments with Emma are when I am simply present.  No agenda, no preconceived plan of action, no desired outcome, just present in her company, enjoying her without judgment.

Here are some of my favorite photos of Emma when she was young before all eye contact went away and one taken over the weekend now that her eye contact has returned.

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Emma and Lists

Posted on September 24, 2010 by | 5 comments

Whenever I am feeling discouraged, I make lists.  I have a number of lists going simultaneously.  I have one for my jewelry business, one for my jewelry e-commerce site (yet to be launched), I have another, which is a general To Do List and then there are the lists for Emma.  Emma – research is one, Emma – goals, is another.

Several days ago, when I posted “What Now?” I was feeling particularly down.  Out came the paper and pen.  A list was created with the simple heading:  Emma.  Below the heading I began to make an action plan.  As I worked on my list Emma appeared caring my Ipad.

“Mommy go to bed?” Emma asked.

“Do you want to sit in my bed with me, Em?” I asked.

“Yes.  You have to ask Mommy.  Mommy come to your bed with you?”  She pulled on the sleeve of my robe.  “Mommy can you come to my bed sit with you?”

“Yes.  But you say – Mommy, can you come with me?” I said standing up.

“Mommy can I come with me,” Emma said, struggling with the ever elusive proper use of pronouns.

“Okay.  Come on!  Let’s go.” I said taking Emma’s hand.

Emma loves the Ipad app – Interactive Alphabet – ABC Flash Cards.  She loves the music, which plays as she taps on different letters, each letter coming to life as she touches it.  This app has become such a favorite, Emma requests it each night before she goes to bed.

“E.  E IS FOR EGG,” the female voice said, when Emma tapped on the egg.  She tapped again and watched it cracked open, a raw egg splatted down next to the first one.

“Hey Em,” I said, “What letter is that?” I asked pointing to the E.  Emma said nothing and tapped on the A.

“A.  A IS FOR APPLE,” the voice said.

Emma tapped on the picture of the apple and watched as the apple was eaten with accompanying crunching noises.

“What about this letter, Em?  What letter is this?” I asked pointing to the B.

Emma ignored me and pressed the B.  We continued in this way for a few more letters, with me watching her as she listened to a letter and then when asked what that letter was, she could not answer.

“Press U Em,” I said.  Much to my surprise, Emma immediately pressed U.

“U.  U IS FOR UMBRELLA,” the voice said.

“Hey Em, press P,” I said, holding my breath.

Without hesitation, Emma pressed the letter P.

“Em what letter is that?” I asked, excitement creeping into my voice.

Emma said nothing and pressed P again.

“P.  P IS FOR PLANT,” the voice intoned, as Emma bopped her head up and down keeping time with the music.

“Okay, how about B?  Press B, Em,” I said.

Sure enough, no hesitation, Emma tapped on the letter B.

“B.  B IS FOR BEACH,” the voice said.

I repeated this with more than a dozen letters, picked at random with never a hesitation on Emma’s part, until I asked her, “What about W.  Press W,” I said.

Emma held her finger over W and then tapped on V, just to the left of it.

“Em!  That’s not W,” I said.

“No.  Not W,” Emma said laughing.

“Come on Em.  Press W,” I said.

Again Emma tapped on V and laughed.

“V. V IS FOR VOLCANO,” the voice said.

“Okay, what about R?” I asked.  “Press R.”

Emma looked at me, smiled and tapped on Q, again the letter just to the left of R.  After this had gone on for three or four more times, it was clear Emma was choosing the letter to the left on purpose. Each time she did so, she laughed.  It reminded me of all those therapy sessions when I would be called in to discuss Emma’s progress.  The puzzled therapist would then describe a session with Emma regarding something she thought Emma knew, only to question whether perhaps she didn’t.

“So it’s a processing issue,” Richard said later that night when I described my session with Emma.

“Yes, it’s really interesting,” I said.  “She knows every letter of the alphabet if I ask her to point to it.  I think she even knows almost all the sounds they make, but if I ask her to name a letter, she can’t.”

Of course the implications are exciting.  Up to this point I have wondered whether Emma could learn to read or write. I wondered if the wiring in her brain was too jumbled to be able to, just as many autistic children who can read and write, cannot speak.  The other night convinced me; reading and writing are achievable goals.

I spent several hours researching other apps for the Ipad and will be previewing a number of the free ones recommended by other parents of autistic children.  In addition, I have watched the first video from Soma Mukhopadhyay regarding her Rapid Prompting Method and intend to watch the second tonight.

I looked at my list just now.  Below the heading – EMMA – I had written Help Emma with Reading and below that Help Emma with Writing.

Maybe, just maybe, I will one day be able to cross those off my list, just as I have been able to cross off:  Toileting & Bedwetting.

By the way, have I mentioned Emma slept the last TWO nights in her own bed without waking anyone, coming into our room at 6:30AM and 6:45AM?

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“Let’s Talk to Her”

Posted on September 22, 2010 by | 1 comment

Making the decision to talk with Emma about something has not been a consideration until recently.   For those of you who are loyal followers of this blog you might be caught off guard by the hopeful tone to this first sentence.  If so, you’re right.  It’s all part of the roller coaster ride we’re on.  Feeling despair, feeling hopeful, feeling despair, feeling hopeful…  Like some sort of Möbius strip, we twist and turn.  Someone said to me once:  feelings aren’t facts.  I try to remember that when I am feeling gloomy and attempt to forget it when I’m optimistic.

Fact:  Emma waking in the middle of the night disrupts the entire family.   Richard and I decided a few weeks ago we would try talking with her about it with varying degrees of success.  See What Now? , Wake Up and Good Bye Diapers! The fact that we had even one night without the sound of her mind-numbing shrieks or her stealthily crawling into our bed at 2:00AM was progress.  So last night I decided to spend some time going over what I hoped she would be able to understand.

“Em, it’s time to get ready for bed,” I began.

“Go to sleep now,” Emma said, nodding her head.

“Yes, and when you go to sleep you stay in your own room,” I waited for a response.

“Okay, Emma?  You have to stay in your bedroom all night.  You cannot wake Mommy and Daddy,” I waited for some indication of understanding.  When there was none, I added, “You have to wait until it’s no longer dark.  If you wake up in the middle of the night you look out your window.  If it’s still dark you stay in your own bed and go back to sleep.”

“Go into Nic’s room,” Emma whispered.

“No, Em.  You stay in your own bed,” I explained.

“You have to wait,” Emma said, nodding her head up and down.

“That’s right, Em,” I smiled at her and kissed her forehead.

“You have to pull on Mommy’s robe.  Mommy can I come get you into the other room?”  Emma said.

“No, Em.  You wait until it’s light out.  Then you can come into Mommy’s room.”

“You have to wait,” Emma said again.

I continued to go over the plan with her, step by step.  I attempted to explain the need for her to try and go back to sleep if she woke up in the middle of the night, the importance of staying in her own bed.  I even went over breathing techniques to help her if she began to get upset and wanted to wake us.  Emma nodded her head throughout all of this and interjected with things like, “Mommy’s so upset” and  “You cannot wake Mommy”.

“You’re beating a dead horse,” Richard would have said had he been there to witness the ‘conversation’.  I stopped talking, unsure if any of what I said had been understood.

When it was 6:30AM and Emma had not appeared, I smiled as I readied myself for the day.  By 6:50AM and still no Emma I congratulated myself on a job well done.   As I made my way out to the kitchen I paused at Emma’s room and peeked in.  Her bed, a crumple of sheets, duvet tossed on the floor, pillows scrunched into the corner, looking as though a brawl had broken out, was empty.  I opened the door to Nic’s room and saw Emma snuggled up to her brother fast asleep.

Nic woke with a start and groaned.

“Hey Nic.  Are you okay?” I asked.

“No,” he moaned.

“What happened?” I asked.

“Emma!  She kept me up all night.  I’m so tired,” he said.

“Oh, Nic, I’m so sorry.  Was she awake a long time?”

“I don’t know, she kept going like this,” he said putting his hand over my mouth.  “And then when I ignored her, she’d do this,” he demonstrated by pushing my forehead with the palm of his hand.

“Nicky, I’m so sorry.  I told her not to wake us, so she woke you instead.”

“It’s okay, Mom,” Nic said looking up at me blearily.

“Ach”, I muttered under my breath.  “Next time come get me, okay?  I’ll get her out of your room,” I said.

“Yeah, okay Mom,” Nic said.

As I rode the subway to my studio I consoled myself with the thought that even though I feel terrible for Nic that Emma woke him, it is an enormous sign of progress she understood at least part of the message I tried to convey to her last night.

I will speak with Emma again tonight.  Maybe she’ll understand the entire message.

Who knows?  .

As my brother Andy says, “Who knows anything?”

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Posted in Autism, language, Parenting, Sleep Issues

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What Now?

Posted on September 21, 2010 by | 4 comments

Richard and I have both been worrying since we returned to New York City.  We worry Emma has flat lined or worse begun to regress.  She seems more irritable, for the past three nights she has gotten up at 3:45AM, 4:00AM and last night at 2:30AM.  She seems more easily frustrated, quicker to tantrum, less able to tolerate anything she is not able to directly control.

I must add; I am tired, which always affects my outlook, casting everything in a grey laden tone.  I do not know whether I can trust my perceptions.  Is Emma really regressing or am I just tired?  She woke us at 2:30AM last night and though I was not the one returning her to her own bed until she fell back asleep, I felt guilty.  Richard was with her and would be facing a full workday as well.  He had also covered for me, “flying solo” as he put it on both Sunday and Monday morning, as I was an attendee and exhibitor at the WIE Symposium with my jewelry.

I stayed up for over an hour tormenting myself.  Is she regressing?  Have the stem cells had any impact?  What will we do now?  What if none of this works?  What will happen to her?  How will we continue?  My thoughts devolved as the minutes ticked by.

The stem cell treatments have, until recently, provided me with such hope.  I hoped they would make a significant improvement cognitively, in her speech, in her ability to tolerate frustration.  I hoped they would allow us to have a conversation with her.  I hoped they might even help her attend at school, learn eventually to read and write.  Now I am not so sure.  I am feeling beaten down.  What will become of Emma?

I do not know.

We are in uncharted waters.  No one can predict what our autistic children will be like in five years, ten years.  No one can show us autistic children, now adults and say to us – if you do this, this and this, your child will be like this adult.  Functioning, living independently, able to hold a job, have relationships with people who genuinely love them for who they are and not because they are being paid to care for them.

I spent yesterday at the first annual WIE Symposium  (Women, Inspiration, Enterprise).  The day was sponsored by the White Ribbon Alliance, a non-profit, attempting to help pregnant women all over the world have a safe pregnancy and childbirth.  I listened to women who have traveled the world tell horrifying stories of the women and children they have met and are trying to help.

One of the speakers spoke of how all children are our children.  She said it is up to all of us to ensure all children are given opportunities, food, medicine etc.  And I thought about Emma.  Richard and I both hold jobs.   We were both born and raised in the United States.  I have a family who is involved.  We have been given opportunities which vast portions of the world’s population do not have available to them.  And yet, we both have felt the profound isolation which comes with having a child with special needs.  And it is profound.

Mellody Hobson, President of Ariel Investments on a panel – “Business as Usual” told a story of a moment when the market crashed, she called her boyfriend in despair.  He reminded her she was from Chicago.  Not sure where this was going, she said something like, “And?”

“What do you do when there’s a blizzard?” He asked.

She was exasperated, couldn’t figure out the point to his line of questioning and began getting impatient.

“You look at your feet, you don’t look up, because you’ll fall.  So you look at your feet and you keep walking,” he said.

Later, each panelist was asked what advice had proven most helpful to them over the years, Mellody said she’d been told to smile.  Mellody is an African-American woman who said she made the decision she did not want to be “an angry black woman.”  She spoke of how it was important to her to carry on her life with elegance.  She told another story about conducting a meeting at her office only to have the first gentleman who arrived hand her his coat.  She said nothing, hung it in the closet and proceeded to sit at the head of the conference table where she began the meeting.

The last panel was on Philanthropy and Advocacy.  A young African girl, Nthabiseng Tshabalala was on the panel and spoke last.  She looked to be about Emma’s age, perhaps a few years older.  She spoke beautifully about her experiences and ended with, “I am here because I am educated, you (gesturing to the moderator Sarah Brown) are here because you are educated, all of you are here because you are educated”, and again I thought of Emma and all the children in this country who are not “educated”.  Where does that leave us?  Where do we go from here?

For today I am going to look at my feet and keep walking.

“Do something for someone else,” Diane Von Furstenberg told a young audience member, seeking advice.  “And fake it ‘til you make it.”

I’ll try that as well.

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Emma & Music

Posted on September 17, 2010 by | Leave a comment

My studio, where I design my jewelry has windows facing west into Manhattan and north looking out onto the 59th Street Bridge.  The flow of traffic making its way to and from Manhattan is oddly soothing to me, though I never take anything other than the subway to and from work.

Many autistic children are fascinated by some mode of transportation.  I remember at Emma’s preschool there was a little boy who was high functioning. He would recite all the stops on every subway line in New York City.  When he was on the carousel in the park he would shout out the stops.  “Next stop, 59th Street, Columbus Circle,” he’d yell.  “Connections to the A, B, C, D and 1 trains!”

Richard was standing next to the child’s father as this went on.  “He forgot 50th Street,” Richard said at one point.

“No, 50th Street is under construction this week,” the boy’s father replied without taking his eyes off his son.

Emma doesn’t keep tabs on the subway system, if she did, I wouldn’t need my iTransNYC app on my iphone.  However she does prefer taking the subway and can lead anyone through its maze of exits and entrances like the seasoned subway rider she has become.  She knows which train to take and will say things like, “No take the red train.”  Meaning she wants to take the train running under 7th Avenue leading from our house to Central Park or she’ll say, “Take the yellow train?”  Which typically indicates she wants to go to the zoo in Central Park or FAO Schwartz and the Apple store.

Emma is an adept traveler on airplanes, trains of any kind and even in cars, she will sit quietly gazing out the window, humming.   Emma’s memory comes into play with events which happened often years ago – as demonstrated when she says things like, “Amy all gone.  Amy move away.”

This is in reference to her preschool teacher now almost five years since she last saw her.  In addition, Emma has an uncanny ability of remembering the tunes to songs.  She is able to hear a song once and then we will hear her sing it note for note sometimes a week or two later.  The lyrics are often garbled and when she doesn’t remember the exact words or cannot pronounce them she’ll sing an incomprehensible version or will fill in by humming, keeping the tune intact.  I am in awe of Emma’s ability to hold a tune and her memory of lyrics, particularly when she usually does not understand the words.  This is an audio recording of Emma singing “The Mambo” one of her favorite songs from an Elmo Video in which Linda Ronstadt, dressed up as a mariachi band member sings.

Emma Singing The Mambo

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“But She Looks So Normal!”

Posted on September 16, 2010 by | 2 comments

Is what someone said to me the other day when I mentioned the reason Emma wasn’t responding immediately was because she’s autistic.  And when Emma finally did respond, it was with a reply which had no application to the question asked.

If we went on looks alone, we would all be in trouble.  However in Emma’s case it both serves her as well as complicates things.  People look at Emma and assume she’s “normal”.  They see an athletic, cheerful child.  It is difficult for people to believe she cannot communicate as other children her age do.

I have had the experience of being told on more occasions than I can count, “Oh my toddler does that too!”  or “She sounds just like my son!” and then they go on to tell me stories about their impish child’s antics which remind them of Emma.  Except that Emma is not an extremely tall two-year old who is acting out.  She is an autistic eight-year old who’s verbal skills continue to progress at a snail’s pace.  When people comment she is like a two-year old, they are right in some ways, but in most ways it is an incorrect assumption.  Emma is not “delayed”, she’s autistic and there is a vast difference between the two.

Explaining Emma to our son Nic, has forced me to become aware of just how complicated it is to describe her.  To say that she is doing something – biting herself, for example – as a way to get attention, would be incorrect.  Emma is not seeking attention.  I believe she is trying to gain control around a situation, which is uncontrollable.  The pain she causes herself is more tolerable than the pain she feels from a situation she has no power over.

When I look at her brain scans and see the lack of symmetry, the bright colors, which should be dark, like a strange Rorschach test gone wildly awry, I try to detect patterns.  I try to make sense of what I’m seeing, but cannot.

“Emma’s brain is not like ours,” I tell my son and myself in times of upset.  She does not think, feel, see or hear as we do.  She is decidedly “other”.

But how to explain this to the family on the airplane we recently took when asked if they wouldn’t mind sitting across the aisle from their grown children so that we might sit next to Emma?

When they refused, the father added, “I don’t see what the big deal is, you’re sitting near her, just the aisle’s between you.”

How does one then explain how agitated Emma will become?  How can one really make people understand, who have little or no contact with autistic children or if they have, one unlike Emma?  Of course Emma did become agitated and eventually we found two kind souls many rows back who were happy to take our seats so we could sit next to Emma, disaster narrowly averted.

“I can’t imagine what it must be like to parent an autistic child,” a friend of mine said a few weeks ago.

“I can’t imagine what it’s like to have two neuro-typical children,” I responded.  Afterwards, I thought about our conversation.  I really cannot imagine.  Emma informs every aspect of our lives.  When Emma says or does something new we record it.   Every milestone, each new word uttered is met with astonished elation.

I remember when Richard and I were planning our wedding.  A friend of Richard’s told us to take a few moments to absorb everything that was happening because it would go by so quickly.  We took his advice and to this day I can remember the beautiful floral wreath arrangements hanging from each lighting fixture, the candles casting their golden shadows across the room, Richard’s handsome face as I walked down the aisle toward him.  I remember because I stopped for a moment and took the time to take it all in.

Emma has provided us with something similar.  Her progress is so slow.  We celebrate each and every tiny step forward.  Of course we are also forced to spend much more time than we’d like, being present for the steps not taken, the fumbles, the excruciating process of growing up in a world where people do not understand, who judge Emma and us, assume she’s a “normal” child who is just being obstinate, difficult or “spoiled”.

The trick is to savor it all, I suppose.  A trick I continue to work on.

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Transitions

Posted on September 13, 2010 by | 1 comment

Transitions can be difficult for all of us, but particularly troubling for autistic children.  One of the defining characteristics of autism is an insistence on sameness and routine.  When a routine is disrupted the autistic child suffers.  Anything I write regarding this will be an understatement.  How can I describe the abject terror in Emma’s eyes when she cannot adequately communicate her fears and anxiety?  I cannot.

Emma has had meltdowns, several in a day since we returned home.   They tend to increase in intensity in the late afternoon, early evening when she is tired.  When I examine the behavior it continues to baffle.  Last night was a perfect example.  I was preparing to go out when Emma who was listening to a music video suddenly screamed,  “I need help!”  And then bit herself on her forearm.  The bite didn’t draw blood, but it was hard enough that we could see the teeth marks and it immediately began to swell.  She tends to switch arms and so both of her forearms have bruises on them from previous biting.

“It’s not okay to bite, Emma, I said, kneeling down.  “What’s going on?” I asked,

“No biting!” Emma yelled and then said, “I need help!”

“What do you need help with?” Richard asked joining us.

“You have to ask Mommy.  You have to pull on Mommy’s shirt,” Emma said, mimicking Joe.

“Do you want to listen to a different video?” I asked, confused.

“NO!”  Emma wailed.

“Okay. Emma, you have to take your thumb out of your mouth, so that I can understand you,” I said.

“Mommy, I need help to look for it,” Emma said.

“What are we looking for?” I asked.

Emma got down on her hands and knees and began crawling around on the floor.

“Em, tell me what we’re looking for?” I asked, joining her.

“I think she lost the foam to her earbuds,” Richard said.

“Em, are we looking for the foam?” I asked.

“Yes!” Emma wailed.

It turned out Emma had thrown the foam covering one of the ear buds onto the ground, for some unknown reason.  Once the foam was found, I joked to Richard as I left, “I’m leaving, I may not come back.”

“I don’t blame you,” he said.

“My phone will be turned off, text me if you need me,” I said. When I returned home Richard looked exhausted.

“How bad was it?” I asked.

“Bad.” Richard answered.

After I left Emma went from one upset to the next, she cried about the video not downloading quickly enough, once that was fixed there was a missing photograph.  See “Photographs” for more on this.  And on it went through out the night until she finally fell asleep around 8:00PM.

Looking at my husband, I knew how he was feeling.  There’s the thought of – I just need to get through this next hour.  And once Emma’s fallen asleep the sense that the tenuous shred of hope we both desperately cling to is fraying.

“Do you want to talk about it?” I asked.

“I really don’t,” Richard said.

I nodded.

For more on Marriage go to:  “Marriage (Part 1)” & “Marriage (Part 2)”.

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Desperation & Coping (Part One)

Posted on September 9, 2010 by | Leave a comment

Desperation is the shared feeling almost all parents of autistic children feel at some point.  It may be fleeting, but I have yet to meet a parent who did not feel some degree of desperation as they tried to make sense of what it means to their child and entire family when autism is diagnosed.

Since Emma’s diagnosis, many people have recommended all kinds of things.  Books to read, vitamin supplements, therapy programs, diets, doctors, specialists, DAN (Defeat Autism Now) doctors, Gastro-Intestinal Pediatricians, Neurologists, Developmental Pediatricians, Psychics, Nutritionists, healers, Shamans, Homeopaths, massage therapists, Qi Gong Masters, I could go on, but I won’t.  When I look back on those first few months after Emma was diagnosed, everyone I ran into seemed to know someone with an autistic child whom they wanted me to speak to or who was doing something they felt might be useful.  See Our Emma, The Beginning and The Beginning (Cont’d) for more.

Many of these suggestions turned out to be extremely helpful.  But in the beginning it was overwhelming.  I simply could not process my emotions as well as organize her therapies quickly enough to make good use of the plethora of information I was being given.   I made a file, which I labeled “Emma” and threw everything into it.  For months I was unable to look in the file.  During that initial period, when I wasn’t taking Emma to various doctors and overseeing her therapists, often seven in a single day, I was reading books and on the Internet trying to learn all I could.  Only then was I able to start going through the file filled with suggestions.  It was a difficult period for all of us.

Emma – Summer, 2006 – Two Years After the Diagnosis

As time went on and we adjusted to our life with autism, I found it easier to take the time to investigate a suggestion made.  Now when I receive a suggestion and if it seems even vaguely helpful I will pursue the suggestion with more vigor.  There have been times when people suggest things, which I have already tried or seem very close to something we’ve already tried and so I dismiss it.  And then there are the times I have dismissed something, only to revisit it later.  I try to maintain an open mind while being aware that unfortunately there are many people who see autism as an opportunity to make a great deal of money from desperate parents like myself.  Anyone can claim anything with little or no proof of its efficacy.

Like the many doctors we have spoken to, parents of autistic children have very strong feelings regarding autism and what will or will not help.  With few guidelines and only anecdotal evidence to go by, it is easy to become mired in a stew of conflicting information or as in most cases, not enough information, studies or clinical trials to make a decision, which doesn’t carry some doubt.

I remember speaking to one mother of an autistic boy who was becoming increasingly violent.  She had bite marks on her chest and arms from his latest tantrum.  She was frightened of her child and said to me, “I don’t want to put him on meds, but there are days when I dread going home.  As he gets bigger and stronger I become more afraid. I don’t know what to do, anymore.  And how do I know the meds won’t harm him in the long run?  Our kids are guinea pigs.”

She was but one of many parents faced with the realities of caring for an autistic child.

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Emma’s Art

Posted on September 8, 2010 by | Leave a comment

Emma has never shown a great interest in painting, unless it meant stepping in paint with her feet and rubbing paint on her body.  A few summers ago Emma demanded, “paint” and when I brought out all the supplies; butcher paper, an easel, paintbrushes, she ignored all of it and proceeded to rub paint all over herself.  Within minutes my mother’s family room resembled a giant canvas, with me frantically running around with wet sponges trying to keep the mess to a minimum.  This was then followed by about an hour of bathing, cleaning Emma’s body, washing her hair and face all of which were covered in paint.  (Not to mention the inside of her mouth as she had licked the paintbrush several times before I was able to stop her.)  Once Emma was clean, the tub then needed to be scrubbed.  It reminded me of The Cat in the Hat when the parent’s leave and the demonic Cat shows up to wreck havoc on the otherwise tidy home, much to the children’s horror.

For Emma the entire activity was less about “painting” and more about the sensory pleasure derived from having wet paint on her feet and body.  I reasoned that this was a good way for her to express herself and attain fine motor mastery as well as have fun.  But after the third morning of “painting” I had to take all the paint away because Emma became so perseverative – she had to have certain colors on certain parts of her body – making her increasing anxiety palpable.  It hardly seemed worth whatever pleasure she obtained from the original pursuit.

Last night we had friend’s over for dinner.   Both Jody and Michael are artists and so there was a great deal of conversation about art and studio visits, painting etc.   Nic, who has been an avid artist since he was about two, announced he was going to paint something.  Whether his sudden inspiration was in part due to our conversation or from the fact that another friend had recently asked to purchase one of his paintings cannot be known.  Regardless, out came the paint, paintbrushes, glass of water and paper.  Emma wandered over to the easel where he was working and said, “Do art?”

Nic magnanimously agreed to let Emma paint too.   We produced fresh paper for the easel and Nic and Emma painted together.  After awhile, Nic came back to the dining room table, as Emma continued to paint.  Below is a photograph of Emma and Nic’s work.  It shows one of Emma’s favorite subjects – Birthdays and Birthday Cake.  Nic wrote “Happy Birthday” and made Emma’s name darker than the light blue she had written it in.

Periodically as Emma worked, she would say, “Art!”

Not only was this significant and exciting because Emma was keeping paint on the paper and not on her body, but also because she collaborated with her brother, wrote her own name independently without help or prompting, as well as continued to paint on her own.

This morning Emma asked, “Paint?”

We produced the necessary supplies and again, Emma painted, with a brush putting paint to paper.

Art has informed my life.  Being a jewelry designer, having found the medium I love and being able to express myself while creating a thing of beauty is as close to perfection as I have experienced.  I have up until now, assumed Emma’s “art” took the form of music and singing.  See “The Performance”, “Talent Show” and to hear Emma singing, listen to the audio clip “Emma Singing”.

That Emma may find joy in other types of art is something I have often hoped for, but not dared expect.

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A Conundrum

Posted on September 7, 2010 by | Leave a comment

We are often baffled by words Emma says which we do not understand the context or meaning of.  See Emma’s Language and Sunday Morning’s Conversation for more.   A few weeks ago we were dumbfounded by the utterance, “cheese-solos” which Emma requested over and over again.  Prior to that it was something that sounded like, “atta-tah”.  It turned out the first was cheese doodles, evidently given to her as a snack at her school, but since we never bought them, it took a moment of sheer genius on Joe’s part to make the connection.  The latter turned out to be, “go to town” as in “No we’re not going to go to town.”  Except Emma would say, “No, we’re not going atta-tah.”  Even as a baby, Emma’s first words were, “All done!” though it sounded more like “ah-dah”.  As she has grown older the words continue to confound us, but even when they are intelligible they often do not make sense to any of us.  For the past few weeks in answer to the question – what would you like to do today? – Emma has responded with, “Go to downtown Aspen, push the button game?”

One day last week Joe, determined to get to the bottom of this, spent some two hours in town with Emma trying to figure out what she meant.  He came home as perplexed as when he’d left.

So when Emma said to me, “Downtown Aspen?  Push the button game?”

I inwardly groaned as I knew we would be spending a great deal of time wandering around town trying to find a game which I no longer was convinced she even knew what or where it was played.  But Nic was at the skateboard park with my friend Claudia, so I figured I would go wherever Emma pointed me and see where our adventure took us.

“Go this way,” Emma said from the back seat of the car, pointing in the direction leading toward Independence Pass.

“But Em, that will take us out of town,” I said.

Emma nodded her head.  “Go downtown?” she said with the inflection making it sound like she was posing a question.

“If I turn left Em, we will be heading out of town,” I said, hoping this would clarify things.

“Yes,” Emma said.

“Okay,” I said, taking the next left leading us out of town.  “Is this the right way?” I asked after a few minutes.

“Yes?” Emma said.

“Okay, Em.  You want to go out of town.  This is not downtown, this is leaving town,” I said.

“Leave town?” Emma repeated.

“Where should I go now?” I asked as we passed the turn off to the Aspen Club.

“Go this way?” Emma said.

“Which way, Em.  You have to point,” I said looking at her in the rear view mirror.

“Go this way?” Emma said pointing to the turn off for the cemetery where both my grandparents are buried as well as my father and a number of family pets.

“Oh, do you want to go to the cemetery?” I asked.

“Cemetery?” Emma repeated.  “Push the button game?”

“Okay, Em,” I said as we neared the padlocked gates.  I stopped the car.  “Is this where you play push the button game?”

“No!  Downtown Aspen!” Emma cried.

“But Em, I’ve been asking you where you want to go and you told me to come here. I’ve gone exactly where you wanted, I just can’t understand where it is you want to go,” I said, exasperation and exhaustion crept into my voice.

“Go downtown Aspen?”  Emma managed to say in between tears.

“But Em we just were downtown, remember?  We spent at least 45 minutes downtown with Muzzy in the stroller,” I said.

“Go downtown, push the button?”  Emma repeated sobbing.

“Em.  I give up.  I don’t know where you want to go.  Should we go back to Granma’s?”

“Push the button,” Emma, now inconsolable, cried.

As I turned the ignition on, Richard called asking how things were going and where we were.  He agreed to come meet us at the skateboard park and said he’d take Emma.

The entire way back into town, Emma cried in the back seat, “Push the button!”  Then she paused and said, “Shhhh!  You have to be quiet.  Stop screaming.”  Listening to her I could hear the echo of other people in her life, speaking to her.  Not only was she repeating what had been said to her, she was also adopting the tone and inflection of the many people in her life who have cared for her over the years.

Hours later, while Nic, Claudia and I sat outside the fountain in the middle of town, Richard and Emma appeared.

“Hey!  How did it go?” I asked.

“Well, my theory regarding the push the button game was correct,” Richard said triumphant.

“What theory?” I asked.

“I told you the other day,” Richard said.

“You did not!” I said.

“I did.”

“Tell me.”

“It’s a water sculpture and fountain on the other side of the mall.  If you look at it from a certain angle it kind of looks like a hot tub and she pretends to push a button to make the water jets come on.”  Richard looked at us.

“I cannot believe it,” I said, looking at Emma who was happily sitting on the chair across from me.  “You’re a genius,” I said to Richard.

“The only problem with being a genius is no one recognizes it,” Richard said.

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Questions

Posted on August 3, 2010 by | 3 comments

“Do you think Emma will ever ask us a question?”

When Ariane asked me that question, I had to pause and think about it. Had Emma ever asked us any questions? After a few more seconds of scouring the memory bank, I answered.

“She asks us questions all the time,” I said. “They’re just simple questions.”

“Go to snake bite museum?”

“Watch Elmo movie?”

“Take a plane, see Grandma?”

“Have some apple juice?”

As far as I can remember, all of her questions are requests to have her needs met or requests for information or clarification, which are also needs-related.

“Go to snake bite museum?”  Request for needs to be met.

“Take a plane, go see Grandma?” Request for information related to needs.

She will also frequently make statements that are stealth questions, often with her voice rising up slightly at the end of a sentence like you do when asking a question.

“No see Becky today. No school bus.” Then she will look up at you expectantly, requesting an affirmation.

“That’s right Emma, today’s Saturday, there’s no school today.”

We probably say “That’s right Emma” more than any single phrase to her. As a consequence, she also says “That’s right” all the time.

“No take the bus.”

“That’s right Emma, no school bus today.”

“That’s right! No school bus today!”

“So what do you want to do Emma?”

“Make pancakes?”

“Sure Emma, let’s make pancakes.”

“Yaaaaaaay!”

When Ariane asked me the question about Emma asking a question, I instantly knew what she really meant by that. That’s why I had to pause a few seconds and think about whether she had or not.

“Why does Grandma live so far away?”

“How do they get all the music into an iPod?”

“Where is California? How long does it take to get there?”

“Why are the buildings so tall here?”

“How come they keep all the animals in cages at the zoo?”

“When am I going to be a grown-up?”

These are all simple questions you might hear from any four-year old child. They seem light years away from Emma’s capabilities right now. Why? When? How? Where? What? These questions never seem to materialize, at least not in that form.

“Can I?” “Have some?” “Go there?” Yes, they are all questions, but not the kind you expect to hear from a girl who is eight years old. Her teachers at school have told us she has made progress in asking questions, and will even tell us examples of the what, where, when, how and even some why questions she has asked. I can cite some examples too, though they don’t use the actual W words.

When and where questions are the easiest:

“Get on a plane, go see grandma?” That’s a when question in disguise. She wants to know when we are going.

If we are in an unfamiliar area she might ask a where question like, “Go find swimming pool?” Most kids would ask, “Where can we find a swimming pool around here?”

“Get on a plane, go to hospital (hosspull)?” That’s a when and sort of a where question. She wants to know when we are going for the stem cell treatment and where are we going, which foreign country do we have to fly five hours to reach because our government can’t get it together to have these treatments available here. Ha. Ha.

“Daddy, movie is broken. Daddy help?” That’s a when and how question. How can you get this thing working again? When can I watch Mary Poppins?”

What questions are a rare breed, at least the kind of what questions normal kids ask that stem from curiosity about something unfamiliar. She doesn’t seem to have that curiosity for more information about what something is, how it works, or why it is the way it is.

The rarest of the rare are why questions, and the rarest of the why questions, the albino elephants of the question world, are why questions related to abstract thought.

“Why do bad things happen to good people?”

If we ever hear Emma ask a question like that, we are home free!

Presto, chango. “That’s a normal kid you got there mister!”

Why questions related to feelings are the low hanging fruit we strive to harvest, planting the seeds for them by asking her why she feels the way she feels, usually when her emotions are very intense – intensely happy, or intensely upset.

“Why are you so upset Emma? Why are you so sad (or angry, or frustrated)?

“Emma is so upset (…because…) Emma can’t find cokie.” (her blanket).

If she can truly understand a why question like that, and she does hallelujah, then she can ask one too. Since her receptive language (comprehending what we say) is stronger than her expressive language (communicating her thoughts), this is how we practice with her.

I know she asked me a why question once, related to my feelings. Probably something like “Why is daddy upset?” but I can’t remember exactly what it was.

Maybe Ariane, Joe or one of her teachers or therapists could add more examples they have witnessed in the comments section below. The more we can list, the more hope we have. Hope is the name of the game here (and the name of the blog).

I’d be lying to you if I didn’t have a great deal of hope that this next stem cell treatment will yield a few how and what questions.

If we get a few whys?  Gravy.

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The Path of Most Resistance

Posted on August 2, 2010 by | Leave a comment

“No more camp,” Emma said, sitting near my face on the bed. It was sometime between 5:30 and 6:00 AM — my morning wake-up call.

“Camp all gone. Get on the plane, go see grandma,” she added hopefully.

“No Emma. One more week of camp, then we get on the plane and go to the hospital, meet mommy, then go to grandma’s house,” I corrected her.

Then came her inevitable follow-up: “Pancakes?”

I’m guessing she really misses mommy and Nic from her first-thing-in-the-morning declaration that camp needed to be over right now, and it was time to get on a plane. I’m flying solo with Emma this week. Actually Joe is my copilot, working the day shift, taking her to camp until we fly to Panama Sunday and meet up with Ariane.

We spent the morning après pancakes getting ready for our Central Park outing. I’d offered to take her to Coney Island but she surprisingly passed, opting for Victoria Gardens instead. We rode the rides, had lunch and then Emma wanted to “go to the sprinklers” – which meant a nearby playground with a water spray.

On the way over we passed by the carousel, which was closed for repairs. She took it well, no crying, no screaming, no meltdown – she seemed to ‘get it’ that it was closed and that was that. I thought of all the times I’d been in the park with her and she had one of those spectacular tantrums because she wanted to do something and I said no, because we had to do something else or go home. She was so well behaved this time, and we had such an easy day in the park thus far that I wondered if maybe those tantrums were a thing of the past now – that she had mastered another level of growth and maturity — that she had learned how to cope with frustration and disappointment without going haywire.

We went to the playground. She splashed and romped for quite a long while then said she wanted to go home. As we left she started walking north toward 72nd street. “No Emma, we’re going this way,” I said, pointing downtown.

“No this way!” she shouted, almost instantly frantic. “Take the orange train!”

“Emma, the orange train doesn’t run on weekends, we have to take the red train,” I said, trying to sound as reasonable as I could, but already feeling a tsunami of dread cresting above my head.

“NOOOOOOOO! TAKE THE ORANGE TRAIN!” she screamed, then followed it up with an instant cascade of crocodile tears followed by ear-splitting screams when I said, once again as calmly as I could, “Emma there’s no orange train today.”

And so it goes.

That was always one of my favorite Kurt Vonnegut lines. Such a perfect synopsis of life’s ceaseless challenges, fleeting success and predictable disappointment.

She kept screaming for the next half hour while I weathered, for what seemed like the millionth time, the looks of panic, concern, confusion, irritation and scowling judgment, or more accurately, indictment. Why was this pretty little girl screaming like that? What is that awful man doing to her? Who is he? Why isn’t he comforting her? Is she crazy? Some kind of spoiled brat?

And on and on and on. I could have ended it all instantly by simply doing what she wanted, walking where she wanted to walk, doing what she wanted to do, whether there was an orange train running or not. It sure would have made both our lives easier, not to mention the lives of all the traumatized onlookers.

And then what? Emma is a smart little girl who wants what she wants, like any other kid. But if I rewarded her tantrum with the gift of doing exactly what she wanted when she wanted it, the only lesson that would be learned was that screaming works, and the louder you scream, the more you cry, the better it works. I could have taken the path of least resistance, and believe me, I would have definitely preferred to — if my comfort were the only thing that mattered. But my comfort was as expendable as my desire to look virtuous or shield myself from embarrassment. I had to do the right thing for her and for me, regardless of the incriminating glares and withering head shakes.

I went to the nearest bench and sat down. Eventually Emma followed and sat next to me, still crying and screaming. I asked her if she wanted to take a taxi or the red train. More screams and crying. I explained over and over that the orange train wasn’t running and it made me wonder whether she is capable of understanding something even that simple. Ultimately she calmed down and said, “Take a taxi?” Part question, part capitulation.

“Okay Emma, we’ll take a taxi. Do you want to listen to your iPod?”

“Yes daddy.”

And so it goes.

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Camp

Posted on July 28, 2010 by | 1 comment

For the past two summers Emma has gone to camp for a couple of weeks.  She attends the same camp her older brother Nic goes to.  It’s about an hour outside of the city with two lakes where the children can go fishing, boating and kayaking, a climbing wall, swimming pool and log cabins.  Last year when we signed Nic up we drove up to see the camp and meet the owner.  Emma was ecstatic when she saw the lakes and the owner said, “Do you think she’d like to come too?”

We discussed her autism and agreed Joe would need to shadow her and facilitate interactions with the other children if it was going to work.  The owner was amenable to everything and willing to take a chance.  The camp also had a strong anti-bullying policy, which appealed to us and so after further discussion we signed her up, agreeing that she should take the bus with the other neuro-typical children.

Last summer turned out to be a huge success.  The other girls in Emma’s unit were kind and inclusive.  Two little girls even took a special interest in helping Emma out with things she didn’t seem to understand and held her hand as they went from one activity to another.  Joe reported to us each afternoon as did the camp manager.  I am, to this day, incredibly grateful to those two little girls in particular who took it upon themselves to help Emma and include her in the group.  Children can so often be cruel to one another particularly if one child is “different” so it was particularly heart-warming to hear of children being so generous and kind.  As a result we signed both Nic and Emma up again for this summer.  Emma began asking about camp in April.

By May, unable to contain her excitement she said to me one morning, “Sleep, wake up, sleep, wake up, go to camp by the lake!”

“No, Em.  Not yet.  The water in the lake is too cold.”

“It’s too cold,” Emma said.

In June Emma said, “No not going to go on the school bus.  Sleep wake up go to camp!”

“Not yet, Em.  In another month and a half,” I said.

“It’s too cold,” she said.

“Well, probably not, but it’s not open yet.”

“It’s closed.  Daddy has to fix it,” Emma said.

“No.  You have to wait.  After we get back from Colorado,” I said.

“You have to wait,” Emma repeated.

When we returned from Colorado each morning she woke up and said, “Sleep wake up sleep wake up, sleep wake up, go to camp!”

“Not for another two weeks Em,” I said.

To which she revised her script, “Sleep wake up sleep wake up sleep wake up sleep wake up sleep wake up sleep wakeup sleep wake up sleep wake up sleep wake up,” she said as she counted out on her fingers how many sleep wake ups there were before the blessed day.  When there were too many or if she forgot where she was in her counting she began to laugh and said very quickly, “Sleepwakeupsleepwakeupsleepwakeupsleepwakeupsleepwakeupsleepwakeup…” until I would stop her.

“Em I can’t keep up!” I said.

She laughed, “Whoa!  Whoa!  You’re gong too fast!”

“That’s right, Em.  You’re saying it so quickly I don’t know how many you’ve said.”

“Pancakes?” Emma said with a sly grin.  As if by squeezing in “pancakes” among all the “sleepwakeupsleepwakeups” she thought I might not notice and actually make them with her.  “Noooooooo!  We cannot make pancakes!  We don’t have time,” She answered herself before I was able to say anything.

Pancakes and camp became a running theme. Entangled in her mind – they are her two most anticipated activities other than going to see her Granma in Colorado.

“Camp?” Emma said as she opened her eyes Monday morning.

“Yes!” I said.  “You’re going to camp with Nickey and Joe!” I said.

“No not going to go on the school bus,” Emma said just to be sure she had the correct information.

“No you’re not going to go on the school bus.  What bus will you take?”

“Going on the bus with Joe and Nickey!” Emma shouted.

“Yes!  And where are you going?”

“You’re going to camp, go swimming in the lake!” Emma said jumping up and down on the bed.

“That’s right!” I agreed.

When Emma returned home from camp the first day I asked her, “So Em.  How was camp?”

Emma didn’t answer.

“Hey Em, did you have fun at camp today?”

“YES!”  Emma said bouncing up and down.

“What did you do?” I asked.

“Swam in the lake!  Emma had so much fun!”  Emma said.

“I’m so glad, Em.  Do you want to go back tomorrow?”

“YES!”  Emma shouted.  “Sleep wake up get on the bus with Nickey and Joe go swimming in the lake!”  She said very quickly.

“Sounds like an excellent plan,” I said.

And that’s exactly what she did.

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A Wish

Posted on July 27, 2010 by | 1 comment

The parent of a severely disabled child asked me a few weeks ago what I wanted for Emma.  She was referring to the long term, the far off future.

“I’m assuming you’re not expecting her to go to Harvard,” she said.

Well no, I thought.  That has never been a goal for either of my children, but I didn’t say that to her.  Instead I said, “I want her to be able to live independently.  I would like her to have friendships, to be able to find something she loves doing and takes pride in.  I would like her to be a kind, thoughtful person who is able to contribute in some way to society and our world,” I stopped for a minute.  “I guess I want her to feel good about who she is in the world.”

She nodded her head.

When Richard and I decided we wanted to try to have children we spent many hours discussing our views on parenting and childrearing.  We were in agreement with almost everything.  Neither one of us cared what college our child went to or even if they went to college.  We both agreed we were more concerned with our children finding a career they loved.   We agreed we wanted them to be kind, to be generous, to consider others and to behave in ways which foster that.  We agreed we did not care what their sexual orientation turned out to be and we did not own them.  We both felt strongly our children, if we were lucky enough to have any, were not an extension of ourselves, but independent beings.  We agreed it was our duty to guide and advocate for them until they were old enough to advocate for themselves.

When I was pregnant with Nic I asked my mother if she had any advice for me.  She said, “Love them with all your heart, tell them how much you love them as often as you can and one day they’ll forgive you.”

It was the single best piece of advice anyone has ever given me.  We as parents will make mistakes, we will use a harsher tone than we meant to or are even aware of, we will say things in anger we didn’t mean, we will model behavior that is not always exemplary, we will do things we wish we hadn’t.  But we can say – I’m sorry.  I made a mistake.  And we can convey our love for our children as often as we are able to.

When Richard and I first received Emma’s diagnosis we were given a barrage of information.  We were told to get Emma between 35-40 hours a week of ABA therapy.  We trained with the ABA coordinator so we could continue using ABA with Emma after the therapists left.  I remember thinking after the hundredth flashcard maybe I should just hold her.  Emma wouldn’t let anyone else hold her, but if I sat in the rocking chair she would crawl into my lap.  I would put my arms around her with her head resting on my chest and we would sit like that together for up to an hour sometimes more.  During that early period it was the one thing I felt I could do with Emma, which no one else was able to do.  It seemed more important than forcing her to do yet another puzzle or one more sequencing game.  I reasoned, for a child who appeared emotionally cut off from other human beings, holding her was a kind of therapy too and perhaps as essential if not more essential than any of her other therapies.

Those hours spent with Emma in my lap were bliss.   Whether the physical affection made a difference or not I cannot know for sure.  My guess is it did and continues to make a difference.  To this day I remember as a little girl sitting between my mother’s legs by our swimming pool and leaning my small body against hers, her arms wrapped around me.  There is something about physical touch, which promotes a state of well being unlike anything else.

It is that state of well being I wish for both my children.

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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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