Tag Archives: children special needs

The Performance

Posted on August 19, 2010 | 1 Comment

Emma loves nothing more than a birthday party.  And so it was with great excitement that she descended the staircase wearing her party dress with a pair of lime-green and black crocks on her feet last night.

“Oh Emma!  You look so beautiful!”  I said when I saw her.

“It’s Mommy’s birthday,” She said in response.

If we are having a few people over for dinner, Emma will say, “It’s a birthday party!”

“No, we’re just having some friends over for dinner,” I will try to explain.

“Party,” Emma will say, nodding her head and then she’ll add quickly, almost under her breath, “Birthday party.”  As though by saying this it will make it so.

It doesn’t matter how often we explain that any given holiday such as Christmas is different than a birthday it becomes a  - “Christmas Birthday party.”  If we are having family and friends over for Thanksgiving – it becomes a “Thanksgiving Birthday party”.  My mother’s birthday falls on Thanksgiving every seven years, which has only compounded the problem, making our explanation all the more inexplicable to Emma.  How is it that just two years ago we had a huge birthday celebration on Thanksgiving for my mother with relatives flying in from all over the US and now this year it’s a regular Thanksgiving.  As far as Emma’s concerned we are making things far too complicated.  A party is a birthday party no matter what we say.  And yet, now after the other night’s monologue I wonder if this is true.  Perhaps the subtleties are not lost on her, perhaps she simply is unable to express herself well enough to tell us how she feels and it’s the excitement she is trying her best to convey.  The kind of excitement we can understand and which we are able to share with her derived from a birthday celebration.

So it was last night as I celebrated a half-century of life, which does seem an awfully long time.  But age carries little importance to Emma.  Often when asked, “Emma, how old are you?”  She will answer, “Three!” or “Five!” as likely as what her real age is, “Eight!”  These are words, which she tries to remember but sometimes forgets.  When I hear her answer, it seems to me the number holds no meaning to her.    As it should be, I say.

Last night after the birthday cake was served and my mother had given a toast, Emma ran up to the front of the room, grabbed hold of a pretend microphone and proceeded to say in a loud voice, “Ladies and Gentleman!  Enjoy the show!”

Richard and I exchanged a nervous look.  Emma has been known to get up in front of an “audience” whether it’s on the subway and they are involuntary and captive or at any dinner party to sing.  Often Emma will sing the same song over and over until she is told to stop.  When we are home and it’s just us we will allow her to sing the same song repeatedly.  However even then we will try to redirect her and encourage her to sing a different song to break her out of the increasingly perseverative loop she can get herself in.

“Emma!  Would you like to sing?”  I asked.

“Yes,” Emma said, bouncing up and down.

“Okay, one song,” I said holding up an index finger.

Emma nodded her head, “Okay.”

“What would you like to sing?” I asked.

“It’s My Life,” Emma said.

It’s My Life by Gwen Stefani is Emma’s favorite song, hands down.  Not only does Emma know the lyrics by heart, but she has all the instrumentals down and does her best to make noises replicating them.  Our guests, all 50 plus of them gave her their attention as Emma began.  It was a flawless performance, which began somewhat timidly, for Emma is usually not shy in either pitch nor volume, picking up in intensity after the first few bars.  By the end she was dancing and singing with abandon.  When she finished everyone cheered and applauded as Emma beamed.  She ran over to me.

Looking into my eyes she said, “Daddy’s turn and then Emma sing again?”

That’s our beautiful girl – a Gwen Stefani wannabe, rock and roll princess who loves an appreciative audience.  I’m just hoping someone recorded it.

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Posted in Aspen, Autism

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Questions

Posted on August 3, 2010 | 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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Posted in Autism, Parenting, Stem Cells

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Theories

Posted on July 16, 2010 | Leave a comment

Autism is nothing without theories.  Specialists, doctors, scientists, geneticists, parents, everyone has a theory when it comes to autism.

Richard claims I have more theories regarding autism than the most versed specialist.  And he’s right, I do.  The only difference is, I freely admit 95% of them turn out to be wrong and the remaining 5% have no validity because while they may prove right for Emma on any given day, they do not hold up long term or within the larger autism population.

Richard and I have a running joke about my desire, my need for theories.  When we are confronted with any new behavior from Emma, Richard will look at me and say, ”And your theory is?”

The beauty of having theories is, autism remains an enormous question mark and so the most impractical of theories hold weight if for no other reason than because they are difficult to prove wrong.  There is so much more we do not know than we do.  The other thing about theories is they give us  (me anyway) hope.  Hope that we’re moving forward.  Hope that maybe this line of thinking is going in the right direction.  Hope that the theory will lead to another theory, which in turn will prove to be true, leading us to a cure, a cause, something, anything…  No matter how crazy, the theory stands until proven otherwise and with autism that may be for a long time.  It’s something, anything, to go on amidst the great expanse of unknown.

Richard usually leaves the theorizing to me, so I was surprised when he said to me last night, “I have a theory.’

“Really?” I said looking at him to be sure he wasn’t making fun of me.

“Yes,” he said.

“Great!  Tell me more.” I said.

“Emma is doing great. “

“And your theory is?” I prodded.

“That is my theory.  She’s doing great.  The other day she and I were walking down the street.  I passed her and stepped off the curb to hail a taxi, but she didn’t see me.  She looked around, her eyes got really big and then she said something, I can’t remember what.  But she was scared and didn’t know where I was.  I called out to her – Emma!  I’m right here!  When she saw me, she cried out – There’s Daddy!  There’s Daddy!  I found you!  That’s never happened before,” Richard paused.  “She was really frightened when she thought I wasn’t there,” he said.

Suddenly I remembered when Emma was three and we went to New Paltz for the weekend.  We stayed at a huge rambling hotel right out of The Shining.  Richard and I in one room, the children with Joe in an adjoining room.  At around 2:00AM I heard a door slam, thinking nothing of it I started to go back to sleep.  Five minutes later our door opened and Joe said, “Is Emma with you guys?”  In a panic all of us threw on clothes and began searching the labryinthian hallways calling for Emma.  We split up hoping we might cover more ground that way, I ran to the front desk and reported her missing to the hotel staff.  It was the dead of winter, snow drifts piled up around the hotel, I was terrified Emma might open one of the self locking doors to the outside and not be able to get back in.  She was bare foot with just her nightgown on.  After about 20 minutes when panic had turned to ice – when your body no longer feels it is your own – one of us found her.  It was either Joe or Richard, I can no longer remember, but I know I began to cry in relief.  She was holding hands with some man who worked for the hotel.  He was quietly talking to her – at that time she had almost no language – and leading her back to the front desk.   I was in tears, thinking of all the horrible things that might have happened to her.  But Emma acted as though nothing unusual had occurred.

Richard continued, “Her sentences are becoming more complex, she’s become much more engaged, she talks all the time now and it’s not just because she wants something.  She’s talking to connect with us.  She wants to connect with us.  And except for the other night, she hasn’t wet the bed in almost a month now.”  He looked at me and then added, “She’s doing great.”

I remember when Emma turned four we had a big birthday party for her, hired a musician to come and play the guitar and sing kid friendly songs.  Emma was dressed up in one of her “party” dresses with a tiara on.  She spent most of the party trying to lie down inside of the musician’s guitar case, ignoring all the other children and the music.  I remember plastering on a smile for our guests, at one point I excused myself and wept in the back, giving myself two minutes to cry before returning to the party and pretending everything was fine.  I didn’t fully understand her sensory issues; I hadn’t developed any theories at that point.  I was still in the process of reading everyone else’s theories regarding autism.

“It’s a good theory,” I said to Richard.

“Yup.  I like it,” he said.

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Posted in Autism, Bedwetting, Marriage, Parenting, Speech, Stem Cells

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An Addendum

Posted on July 13, 2010 | 1 Comment

Last night Emma thoroughly soaked the bed at around 4:30AM.  It was a grand gesture.   Of course, as Richard had pointed out on more than one occasion, I was ‘flying without a net’ and therefore utterly unprepared for the great flood.  In fact, did not even realize she wet the bed until about ten minutes afterward when I felt her naked body snuggling up against mine in a desperate attempt to flee the growing pool of urine soaked sheets.  Her soaked nightgown tossed on the floor lay in a heap.

“Oh dear!” I said to no one in particular when I realized what had happened.

“Emma wet the bed,” Emma responded, nodding her head up and down.  Then she leaped up and turned on all the lights.  Whether this was an indication that she was now wide awake or as a means of further investigation, I could not be sure.

“No, no Emma.  We are going to go back to sleep,” I said, pulling soiled sheets from the bed and throwing random towels and ‘water proof’ pads down.  In my head I imagined Richard’s voice admonishing me, “Oh, so now you decide to use the waterproof pads.”

Emma watched me.  “Turn off the lights?”  She asked.

“Yes,” I said.  “Let’s go back to sleep.”

“Time to go to sleep,” She agreed, before turning off the lights.

A few hours later when it was time to wake up, Emma said, “Hi Mommy!”

“Good morning Emma,” I said giving her a kiss.

“Have to use the toilet,” Emma said.  “You cannot pee in the bed!”

“It’s okay, Em.  You had an accident.  But we’ll put the alarm on before you go to sleep tonight,” I said.

“You have to wear the alarm.  You have to put the alarm on,” Emma said.

“That’s right.  No big deal, Em.”

“No!  You have to pee in the toilet!”  Emma said sternly as though she were taking on the role of the bad cop in “good cop, bad cop”.

“That’s right.  We pee in the toilet.”

And then I remembered I had forgotten to have Emma “double void” last night before she went to sleep.  “Double void” is an expression used in the  “Seven Steps to Nighttime Dryness” booklet.  It refers to the process of peeing once before bed, then brushing teeth, washing ones face, going through ones regular bedtime routine before peeing once more just before getting into bed to go to sleep.  The booklet instructs, “Many parents, upon learning about the benefits of urinating twice before bedtime, report they have consistently done this for years.  You can teach you child to make “double voiding” part of his lifelong bedtime routine.”

“I forgot to tell you to go pee before you went to bed last night,” I said.

Emma looked at me and said, “It’s okay.  It’s okay.”

As I was shoving the sheets into the washing machine, Emma pointed to them and said, “Now the sheets take a bath.”

I laughed.  “That’s right Em.  The sheets need to be washed.”

Emma nodded her head and smiled at me. “Bye, bye sheets,” She said.

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Emma’s School Bus

Posted on June 25, 2010 | Leave a comment

Emma came home this evening and said, “Sad.”  This was in answer to my question, “How are you?”

“Why Emma?  What happened?” I asked.

“Emma have to go on the school bus.  Emma make you sad,” she said, frowning and nodding her head.

“What do you mean?” I asked kneeling down so my eyes were on the same level as hers.

“You have to wait!  You have to sit!  Emma cry.  Emma bite yourself,” Emma looked directly at me as she said this.

“Why do you have to wait, Emma?” I asked.

“Want to go to Becky’s class.”

“Did your bus come to school early?”  I asked trying to piece together what Emma was trying to tell me.

“You have to wait.  Want to go to Becky’s class.”

“Did someone tell you, you had to wait?” I asked.

Emma nodded her head.  Shouting and pointing her finger she said, “I told you! SIT DOWN!”

At this point I was more than a little alarmed.  “Emma, who said that to you?”

Emma didn’t answer at first, then nodded her head.  “Yeah,” she said in a sad voice.

These kinds of responses from Emma only highlight how difficult it can be to communicate with her and understand her.

“Did the bus driver say that to you or the bus matron?” I asked, knowing these were the only two people on the school bus.

“Bus driver said – I told you NO!  Sit down!”  Emma said in a loud stern voice.  Then in a quieter voice she said, “Emma cry.  Emma so upset.”

I think it was at this point in the conversation when I went to the computer and wrote an email to our lawyer, ccing Richard and Emma’s head teacher, the head master and social worker.  I have no idea what kind of recourse is available to us and so we need advice.  What I do know is that we have had to deal with the Office of Public Transportation since Emma began going to school five years ago.  Emma’s bus arrives between 7:20AM and 7:40AM to take her some fourteen blocks to her school, which begins at 8:30AM.  When I called to complain about the early pick up time, insisting that it cannot possibly take an hour to drive fourteen blocks even if three of them are cross town blocks, I was told the bus picks up many other children who go to several nearby special education schools before Emma is eventually dropped off at her school.  In other words, Emma is driven around the city for close to an hour.  For years now I have questioned the logic in this and have been:  hung up on, yelled at or told this is the way the route is mapped out and there’s nothing that can be done.

A few years ago I was determined to have the bus change their pick up time from 7:15AM to something later.  For two months I went back and forth with various people at the Office of Public Transportation, sometimes calling three and four times in a single day.  By the time they finally agreed to change Emma’s pick up time the semester was coming to an end and we started anew with a new bus company and driver after the break.  Which is another bizarre thing.  Are special needs children the only ones who have a new bus company, new bus driver, new bus route every three to four months?  How is it that neuro-typical children in New York City have the same bus for the entire school year, often for several years in a row?

In the past few weeks I have noticed when the bus pulls up that there seem to be only one or two other children on the bus as was the case Thursday morning, no other children.  Emma was the only child.  So unless the bus is picking up children after Emma, it is driving fourteen blocks (which should take about ten minutes depending on traffic.  If the bus arrives early, (picks Emma up at 7:25AM drives ten minutes to her school, getting there by 7:35AM) it sits idling outside the school until the school’s doors open at 8:25AM.  Which means (if I am correct) Emma is waiting in the bus alone for almost an hour.

What makes all of this particularly horrifying to me is we put Emma on the school bus and cross our fingers she will be treated well and with respect, she will arrive safely at her school in a timely manner, but we cannot know what really goes on because Emma cannot tell us.  We have to trust.  And at this moment I no longer trust.

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Posted in Autism, Parenting, Rebecca School

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Rules

Posted on June 2, 2010 | 1 Comment

Emma can be very strict.  She is a stickler for rules.  Merlin (see yesterday’s post) is not supposed to jump up onto the counters or dining room table.  If he does, Emma shouts, “Merlin!  Get down!”  Even if he hasn’t jumped up on the counter (yet) Emma will remind him, “Merlin!  You may not get up on the table.”

If we have a vase of flowers on the dining room table Emma will repeatedly warn Merlin (whether it applies or not) “Merlin, kitty, you cannot eat the flowers!”  Then she’ll laugh.

These are all things she has heard us say at some point and Emma is a terrific mimic.  She will not only repeat the things she hears us say, but she will mimic the tone.  There’s a word for what she does.  It is – echolalia – common among autistic children.  Echolalia is the parroting or echoing of sentences and phrases heard.   Emma does not make the sorts of linguistic mistakes commonly heard in young children.  She does not say things like – I bringed it to her – something often heard from young neuro-typical children as they try their best to navigate the English language.  On the other hand Emma will say – Bye Emma! When saying good-bye to someone, whose name is definitely not Emma.  It is what she hears them say to her when they or she is leaving.  Why would she say anything else!?  To Emma “Bye Emma” means a parting of ways.  Or, as in the case of a dinner party we had a few months ago, Emma felt it was time for everyone to leave, she announced – “Dinner is all done!  Bye Emma!”  When our guests, understandably confused, said, “Oh!  Are you going now?” but did not themselves show any sign of leaving, Emma began bringing them their coats, saying, “Bye! Bye Emma!”  while vigorously waving her hand good-bye.  Needless to say she cleared the place out within minutes, despite our reassurances that it was not time to go yet and wouldn’t they like to stay and have some coffee or tea.

For Emma, however, we had eaten, she had patiently waited while this occurred.  She knew there would be dessert after which she would be allowed to blow out the candles on the dinner table while singing “Happy Birthday” (Any party is a birthday party and remarkably some guest almost always is about to have or has just had a birthday – so it confirms Emma’s ‘party = birthday party’ theory.)  Once Emma has sung Happy Birthday, usually several times and with all of us joining in for the third or fourth “last time” rendition – it is time to go to bed.  Emma has a difficult time understanding that we may not be ready for bed.  We may want to move into the living room to talk, have some tea or coffee and enjoy each other’s company.  This, for Emma, is not how it should be, it is her bedtime now and so it should be everyone elses too.  This sort of flexibility does not fit into her “rules”.  The guests should leave and if they do not, then Emma must remind them.

When Emma was beginning to talk she did not say single words, but whole sentences.  See previous post – “Emma at Ten Months Old”.  As Emma grew older, she would repeat things she heard others say.  But the things she latched on to were things said with a great deal of emotion, or, as Stanley Greenspan used to say, “high affect”.  Sometimes these comments were in context, but other times they were arbitrary.  A dear friend of mine who has two children just a bit younger than mine admonished her son in the playground one day while we were there.

“Rogan NO!”  She shouted, as her son dashed toward the gate leading out onto 10th Avenue.  Emma, for the next four years mimicked her in all sorts of situations.  Often it was when she wanted to go somewhere, but knew she shouldn’t, but just as often it was arbitrary.  Emma would shout, “Rogan NO!”   Sometimes she would add  “You have to come back!”  And sometimes she would just use the short hand version  “NO!”  But we knew from the way she said it, the tone she used who she was mimicking.  She had captured the voice perfectly.  A few years ago we ran into my friend with her children in the park and Emma upon seeing her, immediately said, “Rogan, NO!”  Fortunately my friend has a good sense of humor and didn’t take offense.

Emma does the same thing with another friend of ours.

“Jack!” Emma will shout in a stern voice.  Then “Jack!  Jack!  Jack!”  Said in rapid succession.  She captures the child’s name and the anxiety ridden pitch perfectly.  At Nic’s birthday party a few years back, Emma, upon seeing Jack’s father, started shouting – Jack!  Jack! Jack!

“I guess that’s how I sound, huh?” The father said, looking slightly embarrassed.

How to explain?

For Emma, rules help her cope in a world run riot.  Rules provide sameness and from that, Emma derives comfort.  Though Emma has been known to question some of the rules she does not like.  “We cannot make pancakes,” Emma will say, knowing it is a school day.  She hopes maybe we will make pancakes anyway and this is as close to a question as we often get.  But once confirmed, “No we cannot make pancakes this morning.  It’s Wednesday,” one of us will say, Emma will begrudgingly accept this.  It is our rule after all.

“Sleep, wake up, sleep wake up, sleep wake up, pancakes!” Emma will respond.

“Yes.  That’s right.  Pancakes on Saturday and Sunday.”

“Make pancakes with Mommy?”  Emma will say with a sly grin, trying one last time to see if this ‘rule’ can be suspended if for only one day.

“Pancakes with Mommy on Saturday.  Today is Wednesday.”

“Okay,” Emma will say.

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Posted in Autism, Parenting, Speech, Stanley Greenspan

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The Search

Posted on May 10, 2010 | 1 Comment

One of the things I realized early on in my search to help our daughter was, there are a number of people who believe they know what causes autism and many more who believe they can cure it.  There is also a tremendous amount of money to be made from desperate parents, like myself.   I cannot tell you how often I took Emma to an alternative “healer” who claimed, if I just kept going and paying them their enormous fee, Emma would be cured.  I do not believe these people meant to deceive, I think they really have convinced themselves their method will cure a child and if it does not, it is because we didn’t give it enough time.

In many ways Bruno Bettelheim’s refrigerator mom is alive and well even if it has taken on a new twist in today’s world.  While no one came right out and said – You are to blame for her autism (and to blame if whatever method they were pushing didn’t cure her) – it was inferred by the questions they asked.  What follows is a sampling of a few of the questions I have been asked over the years.

Did you drink caffeine during your pregnancy?

No.

Did you or do you drink alcohol?

No.

Did you take any sort of medication during your pregnancy or labor?

No.

None?

No.

What about aspirin?

No.

Did you sun bathe?

No.

Did you have an epidural during labor?

No.  No drugs, natural childbirth.

How long did you breast feed?

9 months.

Just nine months?

Yes.  Emma didn’t want to breast feed, she weaned herself.  I wasn’t going to force her to breast feed when it clearly distressed her.

Ahhh…  Did you eat fish?

A couple of times.

What kind?

Grilled swordfish.  I didn’t know about the mercury levels in fish when I was pregnant with Emma.  It was only a few times when we were in Cape Cod.

Uh-huh…

There it was, finally, the answer they were waiting for.  Depending on the practitioner, the questions changed and as a result, my answers, but there always came a point when I gave the “wrong” answer. It always ended the same way with the same look – eyes downcast, a slight sad shake of the head.  I came away from these ‘interviews’ feeling angry, but I also wondered if there was any truth to it.   Maybe the two times I ate grilled swordfish while we were in Cape Cod, really was enough to cause her autism…  I think as a mother, it is second nature to wonder if something one did during pregnancy horribly effected the baby.  To this day I feel tremendous guilt for having unwittingly eaten swordfish during my pregnancy with Emma.  I honestly did not know how toxic our oceans had become.

I have become particularly wary of those who are adamant autism is caused by any one thing.  My guess is, it’s multi-causal, but who knows?  I am also wary of those who speak with absolute assurance they know how to “cure” autism with diets, behavioral therapies and alternative remedies.  Autism is a neurological disorder and while all of these things may play prominent roles in children getting better, I have yet to meet a child who has been cured, in fact, I have yet to meet anyone who has met a child who has been cured.

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Posted in Alternative Therapies, Autism, Parenting

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Mommy & Me Class

Posted on May 4, 2010 | 2 Comments

One of my girlfriend’s and I decided to enroll our daughters in a Mommy & Me class at the Children’s museum.  Emma was walking, so it must have been when she was about eighteen months old or so.  Our daughters were born four weeks apart and it was a way for us to see each other in a city where one routinely must make appointments months ahead to see even close friends.

During the first class Emma became fixated with the guitar, which the young woman who was leading the class played periodically through out the hour and fifteen minutes.  When Emma wasn’t trying to grab the guitar out of her hands, she was dashing up the wooden ladder, crawling through a series of tunnels and sliding down the inflated slide, over and over and over again.  Meanwhile my friend’s daughter was listening to the stories, happily creating all sorts of “art”, interacting with the other children and seemed content to go along with what was being offered.  I laughed it off at the time, but I remember on the subway ride home feeling ashamed and lonely.  They weren’t feelings I could logically explain.  I mentioned to Richard when he returned home from work in the  evening that Emma didn’t seem to like the mommy and me classes.  Beyond that I was unable to put the feelings into words.  I just felt an inexplicable heaviness.

As was typical, I persevered, hoping she would grow out of it, whatever “it” was and kept showing up for the weekly classes that spanned three months.  While other children seemed to develop relationships with one another, albeit rudimentary ones, Emma continued to show no interest in any of the children or adults, for that matter.  I remember clinging to the idea that she was independent.  Looking back to that time, even now, is painful.  I realize we were in limbo, a sort of odd “in between” place which I was unable to recognize, much less express.

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Those Early Days (Continued)

Posted on May 3, 2010 | Leave a comment

“Sounds like classic colic,” the pediatrician said, when I brought Emma in for her check up when she was a few weeks old.

I had just finished describing how Emma didn’t fall asleep until 2:00AM.  How at around 4:00PM she became increasingly irritable, scrunching her face up at some internal horror we could not see.  Her discomfort progressed by the hour, nothing we did alleviated it.  By midnight she was screaming and somewhere around 1:00AM, just as Richard and I thought we were losing all semblance of sanity, whatever plagued her abated.  Between 2:00AM and 3:00AM she felt better or was so exhausted she was able to finally fall sleep.

The pediatrician nodded her head, patiently listening.  “She’ll grow out of it,” she said.

“Is this normal?” I asked.

“It’s not uncommon,” the pediatrician assured me.  “She’ll grow out of it,” she repeated.

“But when?” I asked.

“Usually after about three months,” She said.  “Hang in there, it won’t go on forever.”

I reported all of this to Richard when I returned home.

“I don’t know how much more I can take,” He said.

I nodded.

In the morning Richard needed to get up for work, Nic was waking up at 6:00AM wanting breakfast, and for the first time I really understood why sleep deprivation is used as a form of torture.  I remember being forgetful, losing things, I couldn’t remember what month it was, much less what day it was.  I forgot to bring wipes and snacks for Nic to the playground one day and sat on one of the wooden benches in the playground and wept.  Our building shut the water off for a few hours for maintenance and it felt as though I had been told the building was condemned and we needed to evacuate.

“I would give up state secrets within hours,” I said to Richard one evening in describing how tired I felt.

“Seriously?!” he asked laughing.  “I don’t think you’re a candidate for state secrets to begin with.”

Then one evening after about three months, Richard and I were having dinner.  He looked at me and said, “One more night of this and I’ll have to check into a hotel.”

Emma fell asleep at 8:30PM and slept through to the next morning.

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A Tribute To Stanley Greenspan

Posted on April 30, 2010 | 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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