Tag Archives: literacy

An Unexpected Response and The Importance of Trust

During my supported typing session with Emma Saturday evening we discussed Little Red Riding Hood.  I asked Em what she thought Little Red was bringing Grandma in her basket.  Emma typed “blueberries”, which seemed like a terrific guess, particularly as Little Red could certainly have picked them herself, placing each blueberry in her basket as she made her way toward her Grandma’s house.  We discussed the wolf and I asked questions I thought it likely Em knew the answer to, but that I wouldn’t expect her to answer verbally, just as Pascal, who is helping me, advised.  Eventually I asked, “Em, what would you do if you were asleep in your bed and woke to see the big bad wolf?”  To which Emma typed,  ”I would go to the three little pigs house”.  Though she paused after she’d typed, “I would go to the”.  I urged her, “Take your time Em.  Write what’s in your head.”  She looked at me and whispered, “three little pig’s house.”  She then typed the rest of the sentence with me.  ”I would go to the three little pigs house.”

I looked at that sentence.  It took me a second and then I laughed and said, “Wow Em.  That is such a great idea!”  After all the three little pigs have had run-ins with the wolf.   They know, better than anyone, how to deal with him AND they figured out how to build a wolf-proof structure after much trial and error that the wolf cannot break into and where they are safe.  Emma grinned at me and then, very sweetly, patted my cheek.  I took her loving gesture as a sign of her encouragement and patience with me.

Supporting Emma’s typing is not easy.  It is actually much harder than I imagined it would be.  I am pretty sure Emma spoke the last four words of that sentence because she was not able to trust that I was able to support her well enough to type that.  I think she sensed my hesitation.  I had no idea what she was trying to type and because I am not well trained and am very new to this, my support varies and is not consistent yet.  I am hoping I will learn and be able to give her the support she needs to flourish and eventually type independently.  What is fascinating about FC (facilitated communication, more on that ‘here‘ and ‘here‘) is that had I asked this same question of Emma and expected a verbal response, I do not believe she would have given me this answer.  If she had, I would have been absolutely blown away.  These are not the types of things we have been able to “talk” about.  Typing is giving her the tool she needs to be able to express herself in a way that has not been possible to date.

As an aside, two years ago we hired a woman who developed a literacy program for Autistic children.  While I have some serious misgivings about certain aspects of her program, the literacy piece is extremely well mapped out and it was what finally gave Emma the tools and practice she needed to learn to form the letters of the alphabet and began to read, write and type.  Now two years later as a result, Emma is reading and writing at a second grade level, though it is probably much higher.  Emma was not taught through phonetics, in fact we never even taught her the names of the letters in the alphabet.  For two years Joe and I worked with Emma every day on her literacy program.  For more about that program you can read ‘here‘ and ‘here‘ or put the word “literacy” into the search box and everything I’ve written on the topic will come up (just be aware my ideas and views have changed pretty dramatically since many of these posts were written.)

I mention all of this, because I want people to understand that Emma did not sit down one day and begin typing in full sentences.  She did not suddenly pick up an encyclopedia and begin quoting from it.  I know there are those who have.  I wanted to pursue supported typing with Emma after going to the Autcom Conference this past October and meeting Pascal.  He was kind enough to speak with me about Emma and gave me some advice.  I didn’t know if she would be a good candidate for FC.  After all she has some language and typed independently with her two index fingers.  But I want her able to converse on a more sophisticated level.  It seemed to me, FC might be the method by which she would be able to do that.

I am always in awe of Emma’s patience with this world, with all of us, with me.  Her inner strength and resilience are incredible.  She has been ignored, doubted, talked down to, spoken of while she stood right there listening as though she were deaf, she has been misunderstood and treated as though she were incapable of understanding.  Were I treated this way I would be in a state of near constant rage, alternating with debilitating depression.  If any one of us were treated the way so many view and treat Autistic (whether non-speaking, marginally speaking or fully speaking) people, most of us would want to retreat from this world and lose all faith in people, even people we love.

I do not know how or where Emma gets the strength to greet each day with such cheer or how it is that she is so good-natured, kind and loving after all she has been through in her short life.  But she has and is.  I began this blog thinking it would be a document of Emma’s progress.  But in fact, this blog is a document of my progression.  I look back on entries made just a year ago and see how completely my ideas about Autism and my daughter have changed.  So much of what I thought and believed I no longer agree with or feel.  I have resisted the urge to delete all those past posts, because as horrified as I am by so many of them, I also know they are what I believed at the time.  My own journey is a reminder that we neuro-typical (not otherwise specified) adults can and do change, sometimes it just takes some of us a bit longer.

Me, Pascal, Richard and Em during our first “training” session

The Problem With “Scientific Studies” and Typing With Emma

Last week the first part of my interview with Peyton and her mother, Dianne Goddard was published on the Huffington Post.  Click ‘here‘ to read it.  This portion of the interview was about the horrific abuse Peyton experienced at the hands of two people who were related to her and meant to care for her.   The interview is an astonishing example of forgiveness, but a couple of the commenters questioned whether Peyton had, in fact, written the answers to my questions herself and presumably those same people also doubted whether Peyton was the true author of her book, i am intelligent.  Disbelief, despite the fact that before the book was conceived, Peyton wrote about her abuse and it was confirmed by the two people who abused her.  An abuse that was done in secret; an abuse so horrific it defies the imagination; abuse that went on for a very long time and was known by  none, other than Peyton and those who abused her.

Last Friday I decided to devote a post to FC, you can read it ‘here‘ and while none argued against FC and those who use it here on this blog, one of the commenters on the Huffington Post piece wrote, “I am just relating the controlled scientific studies on FC.  I am saddened that people chose to publish personal information and discount scientific data to mislead the public.”  As I read this I thought, but therein lies, at least part of, the problem.  This IS personal to many, many people.  For those who use facilitated communication it is the difference between being able to communicate and being in this world in a way that is not available to them otherwise.  It means no longer living a life in silence and feeling isolated, it means connection and it can mean the difference between being institutionalized or not.  For those people and their families, FC makes all the difference in the world.

As I reflected on all of this and the swirling debate surrounding the legitimacy of FC as a “valid” form of communication I wondered about the term “scientific study”.  What exactly constitutes a scientific study, what is the criteria for such a study, what are the guidelines?  I found this site from the USDA and there’s this on Judging Criteria for Scientific Research and this, Understanding Scientific Studies where I read, “The scientific process is a road of discovery. It is the process of gaining knowledge about the universe through the observation of measurable evidence. Contrary to what many people  believe, this ‘road’ is not  a straight, smooth motorway: researchers may take different directions of exploration, going down routes that twist, turn, and sometimes even backtrack or come to a dead end, before the facts are uncovered. Even then, the facts uncovered may be only part of a larger, partially understood phenomenon, which requires further research  before we come to  more complete answers.

To return to the question of FC there is much more to be learned.  The studies that have been done to date -  Investigation of authorship in facilitated communication, Contested Words, Springlink an Evaluation of 8 Studies, Facts About Facilitated Communication, A History of Facilitated Communication and A Validated Case Study of Facilitated Communication show the wide array of “scientific studies” and the resulting conclusions which range from, FC is a hoax to Facilitated Communication is a valid form of communication.  Reading any one of the above links I’ve provided makes a compelling case for or against the use of FC.

And yet, for those of us who have personally seen FC used by people like Tracy Thresher, Larry Bissonnette and countless others I can say without a doubt that they are indeed speaking for themselves.  I can recount my own experience with my daughter who learned to write and type with hand over hand support that was gradually lessened with time as she showed a greater ability to write and type independently.  Today she no longer requires any support at all, types with her two index fingers, sometimes without looking at the keyboard and hand writes unaided as well.  However there are people who, because of their physical disabilities, cannot do this, may never be able to do this, and so for them, a facilitator will always be necessary.

For those who question the validity of FC, by all means, read the many studies, educate yourself.  As Amy Sequenzia once said to me, “it’s okay to be skeptical.”  However in the case of FC there are enough “scientific studies” that conflict and in the end only prove that some people are communicating using FC and their lives have been transformed as a result and others have not been as fortunate.

For any who are interested, here is a video of Peyton using FC that she and her mother sent me.

This was a typed “conversation” I had with Emma yesterday.

Me:  Hey Emma let’s type together!

Em:  Happy birthday der Emma.

 Me:  Em, your birthday is in January, but you are thinking about your birthday now, right?

 Em:  Happy birthday.

 Me:  We’ve been talking about your birthday a lot lately.  It’s exciting.  We are planning to go to a hotel with a swimming pool for your birthday and then to Elite Gymnastics for your birthday party. 

 Em:  And take a taxi.

 Me:  Yes, we will take a taxi!

 Em:  To go to that now howtel.

 Me:  Right!  We will take a taxi to a hotel and we will spend the night there.  All of us will go there together.

 Em:  Yes,  we will take a taxi to go to that new hotel has a pool.

 Me:  Yes.  We are going to find a hotel that has a pool.  I know that’s what you want the most; a hotel with a pool.

 Em:  Go in your room.

 Me:  Then what?

 Em:  Get are batigsot on take the elvalr up to the rof and go swimming in the pool.

 Me:  Yes!  We can go to our room, get our bathing suits on, take the elevator to the pool and go swimming in it.  That’s a great idea.  That sounds like so much fun!!

FC users Larry Bissonnette and Tracy Thresher (with his facilitator Harvey Lavoy) at the 2012 Autcom Conference 

Tracy types during the Q & A at AutCom Conference 2012

 

Movie trailer of Wretches and Jabberers

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A Typed Conversation With My Daughter

This is the typed “conversation” I had with Emma last night inspired by the wonderful comments left here yesterday.  This was done with very little talking.  Emma’s replies are in italics.

“Hi Emma.  I know one of your favorite songs is “Beat it”.  What other songs do you like?

Emma likes Fireworks.  Emma likes to go swimming.

Hey!  Did you go swimming today?

Yes, it cold go swimming.

Emma, was the water cold or was the air outside cold or both?

 Both cold outside.

It is cold outside now because it is fall.  I like the fall when the air gets colder.  Do you like the fall too?

 Yes, I do like the fall too.

What do you want to do this weekend?

 I want to have a weekend with Jackie at the Vanderbilt wiyemseeay.  And go swimming.”

This was HUGE for Emma and me.  Rereading it now I’m kicking myself that I didn’t ask better questions and follow her lead more instead of directing the conversation.  For example I wish I’d spent more time talking to her about swimming instead of going off about the seasons, which were of little if any interest to her.  I could have asked her a great many questions about the pool and swimming and the water temperature, but didn’t.  I was so surprised when she wrote, “Yes, it cold go swimming.”  I literally laughed out loud when she wrote that, because this is just huge for her to introduce a new thought, to volunteer new information when typing together.  Excitement doesn’t really sum up what I felt.  I was ecstatic!

Emma kept trying to read my typed words out loud, but I reminded her to read silently.  I made a huge number of mistakes while having this conversation with her.  I corrected her spelling a couple of times, and wished I hadn’t.  I never know whether it’s best to let her spell things and go over the spelling later, separately or whether its better to correct it right away or better to leave it alone.  I wanted her to feel encouraged, supported and cheered on, not criticized.  So that’s something I am still questioning.  I also get so excited when she says anything off the grid, I get overwhelmed and can’t think what to say other than – “OMG you just introduced a new topic and I’m so excited!!”  Maybe I can learn to relax a little and go with it a bit more.  I am also aware that my excitement is an example of my NOT assuming competence or rather it is me feeling euphoric that Em shows her vast intelligence in a way that my NT brain can grasp.  I really want to learn how to move away from that limited thinking on my part.

When Emma was diagnosed with autism I remember that first day when all the therapists came to our home to work with her.  I’d done my homework, read all the materials the agency provided me with and then some.  Yet, I remember how everything was “dumbed down”.  Things that I knew she knew were treated as though she didn’t know them.  Really simple things were suddenly a huge deal if she indicated she knew them.  I remember vividly my confusion.  I began to doubt everything I thought I knew or assumed about Emma.  I completely capitulated to some set idea about my daughter given by a group of people who had never met her but made assumptions based on a single word – Autistic.

I’m old enough and have enough humility to admit I don’t know what I’m doing a great deal of the time.  This is not a popular statement in our culture of bullshit reigning supreme, even if it’s all a lie, even if it means people who know almost nothing about a given topic, but who claim “expertise” are suddenly seen as having something sensible to say.  The art of bullshit has become a well honed skill by about the age of ten these days.  It’s amazing how quickly children learn to adopt it.  Add a little chutzpah and you’ve got a kid who will go far in this world of ours without being particularly knowledgable in anything.

However, the art of bullshit requires a couple of things –  a massive dose of ego and an ability to lie.  My daughter Emma has neither of these.  Still, I am feeling confident she will do well in this crazy world of ours.

The ongoing construction of the Freedom Tower

Look! She’s a Therapist, She’s a Teacher, No She’s a Mom

Sometimes it all feels wrong.  You know?  We’ve been working with Emma on her literacy, reading, writing, typing and then a couple of months ago I just couldn’t keep doing it.  I hit a wall.  I kept telling myself, you’re just tired.  You’ll get back in the saddle, give yourself a break, you’ll feel more energetic, you will.  You just need a little break.

But now it’s several months since I gave myself that little talk and I am no closer to “getting back into the saddle” than the day I said all of that.  And here’s the thing…  when Em was first diagnosed, we did what everyone advised us to do.  We fought and were given 40 hours of ABA, we were trained to continue the ABA after the therapists went home and during the weekends.  Emma was bombarded.  We called it baby boot camp.  It was horrible.  I hated it.  I remember saying to the diminishing few who’d listen, But I don’t want to be Emma’s therapist.  I want to be her mother.

I use to sit with Nic and Em in our big rocking chair, we still have it.  We still fight over who gets to sit in it, though these days, Richard has successfully commandeered it as his own.  But when the children were still little, it was mine, all mine and I’d sit in it with both children in my lap, holding them, rocking them.  Smelling their heads, that smell that only small children have, that smell that no one’s managed to bottle, but that if anyone did, they’d make millions off all us moms.  I loved my new role as mom and I wasn’t thrilled to trade it in for therapist/autism mom extraordinaire.

What was so wild about those early days was how all the “experts” I listened to, I believed they knew better than me.  Despite the fact I kept reading the masses of research saying how little we actually knew, how much we had to learn, there was never any shortage of people who seemed to think they knew it all.  Funny that I never thought to question them in the beginning.  Or more accurately, I did question them, but I tamped those questions down because I so wanted to believe, I needed to believe that someone somewhere knew what the hell they were talking about.

But they didn’t.  Not really.  They certainly didn’t know about Emma.  Every single thing anyone in the field of autism predicted about Emma has proven incorrect.  Everything.  It’s kind of astounding.  But it’s true.  ”Oh, she’ll be mainstreamed by the time she’s in kindergarten” they assured us, always with the codicil, “if you keep doing ______  (fill in the blank).”  ”You’re fortunate she’s so mild.  She’ll be one of those kids who loses the diagnosis,” they’d say with a tone of certainty.  And so we put our better judgment aside, we tamped down our questions, we trained, we worked with her, we questioned her, we showed her the flash cards with the bike and the green t-shirt and the yellow car, we played umpteen games of peek-a-boo and sang the ABC song and Head, shoulders, knees and toes for the nine hundredth time, never questioning why we were doing this.  Never asking ourselves, is this really the best way to spend our time with her?  Are any of these things remotely meaningful to her or are we doing this because this is what a neurotypical child would sing or play?  That Emma was not a neurotypical child was, evidently, not the point.

Now Emma’s ten.  If you ask her, she’ll tell you she’s nine.  I keep meaning to teach her the old, don’t-you-know-its-rude-to-ask-a-lady-her-age routine, thus letting her off the hook.  Because really, who cares?  We ask each other questions like “how old are you,” which is equivalent to the adult question, “what do you do?” but it’s really a way to fill in the silence.  A silence that can be painful.  A silence that doesn’t right the feeling that it’s all wrong.  So we fill it in with words and ideas and studies and tests, but we don’t stop to think, what exactly are we testing?  What exactly are we studying?  What exactly are we doing?  If we test someone and make conclusions based in neurotypical thinking aren’t we missing the point?

I spoke with an Autistic friend yesterday.  She told me she was given a standard IQ test where she proceeded to get every single answer right, so they kept giving it to her, trying to figure out how it was that she was getting all those answers right because she presented as having so many other “issues” and was clearly autistic, they concluded that something was wrong with the way the test was being given.  Meanwhile she thought it all great fun and each time they gave the test to her, she just dug in and cheerfully gave all the correct answers again and again, confounding them.

Which brings me back to all these therapies that require parents to become teacher and therapist.  I’m not a teacher for good reason.  I do not have the skills or the desire to be.  And while I’ve stepped up to the proverbial plate again and again to do what needed to be done, I don’t want to continue.  I want to be Emma’s mom.  I like being Emma’s mom.  I love reading to her and playing with her and dancing with her and being silly and making stupid faces and making up ridiculous sounding laughs and running around pretending to be a monster and cooking with her and showing her how to fold and sort the laundry and how to brush her hair and give her pedicures and manicures and run through the sprinklers together.  I don’t want to be her teacher too.

And maybe, just maybe I don’t have to be.  Maybe all those experts and autism specialists are wrong.  Maybe I can just be her Mom and that’s enough.

Emma is profiled on TPGA’s Slice of Life Series

Emma is featured on the blog – Thinking Person’s Guide to Autism today in their Slice of Life series that they’ve been running through the entire month of April.  For those unfamiliar with TGPA, it is a blog for and by autists and parents of autists.  On their website they write:  ”Thinking Person’s Guide to Autism (TPGA) is the resource we wish we’d had when autism first became part of our lives: a one-stop source for carefully curated, evidence-based information from autism parents, autistics, and autism professionals.”

As Emma couldn’t answer many of the questions, I put together a scrapbook of photos, an audio clip of Emma singing, combined with her answers to the questions she did answer either verbally or through typing.  A couple of the questions I did my best to answer with my own thoughts, whether Emma would agree with them or not, or how she might have answered them were she able to, I do not know.

In preparing the various “answers” for the Slice of Life series I read many of the other profiles TPGA has run everyday this past month.  It was through reading those other profiles that I felt compelled to write the Fear post last Friday.  I fell into that hell of comparing Emma to others, adult autists and other autistic children profiled.   Each and every profile seemed to me to show someone far more “advanced” according to NT standards than Emma.  Because of those feelings, I felt all the more determined Emma should be represented, even if her answers were through other methods of responding than by the more traditional verbal answers.

Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.”

There are so many things people believe regarding autism that I would like to help dispel.  Here are a few of them:

Just because someone cannot speak, does NOT mean they have nothing to say.  

Just because a person cannot say, “I love you,” does not mean they do not.  

Just because a person is not able to express their feelings in ways neuro-typicals can recognize, does NOT mean they do not have them.

Just because someone does not look at you, does NOT mean they do not see you.

Just because someone appears not to hear you, does NOT mean they do not.

Just because a person has been diagnosed with autism does not mean they cannot learn.  It may take longer or it may be quicker than a neuro-typical child, but they can and do.

Assume competence.

Thinking Person’s Guide to Autism is the site I wish had existed when Emma was first diagnosed.  It is the blog I urge anyone who is autistic or with a child who is, to go to.

*And if you haven’t already done so, do vote for your favorite Top Autism Blogs, (you can vote for as many as you like.) I hope Emma’s Hope Book will be one of them!

To read my most recent Huffington Post, click ‘here.’

To read my guest post on Special Needs.com, click ‘here


Fear = Feel Everything And Remain

Fear.  It creeps up on me, seemingly without warning.  Sometimes I get hit with it while brushing my teeth or waiting with my son, Nic, for his school bus or when I am walking to my studio.  Like a person suddenly appearing in front of me, it startles me every time.

There are phrases using fear as an acronym, such as:  F*ck Everything And Run, or False Evidence Appearing Real, or Failure Expected And Received, or Frantic Effort to Appear Real.  I like some of those, but the thing that I’ve found helps the most is to admit I’m feeling fearful out loud.  To “out” it.  To not allow it to sit, twisting and turning in my gut, while pretending it isn’t there.  Pretending it isn’t there rarely helps.  On the other hand, allowing myself to go into intricate detail about it often makes it worse, like feeding a dragon, or adding fuel to a fire, (pick a cliche) so it seems there’s a balance needed.  Feeling the fear, acknowledging it, and then trying to trudge along anyway, or do as my favorite saying regarding fear – feel the fear and do it anyway.  The “it” is often a moving target, particularly as this morning’s fear is all around future thinking involving Emma.

Which leads me to the two most detrimental things that lead me to despair faster than anything else when it comes to my daughter – future thinking and comparing her to others.  Compare and despair, they say.  Deadly.  It is deadly and it doesn’t matter whether I am comparing her to another autistic child or a neuro-typical, it is deadly.  I try to cut that one off at the pass.  If I see it coming I try to turn my back.  ”Don’t go there,” I tell myself.  Sometimes it’s impossible, large gatherings with other children are the worst and sometimes it’s impossible  to avoid.  Sometimes I have to sit and hope it just washes over me and leaves.  I hope there will only be a few waves of it.  I hope I’ll be able to stay upright.  I hope that I’ll be strong enough not to cave under the weight.

That’s the thing about fear, it can be so all encompassing, so random, so…  sprawling.

Make a list.  This is an action step I take when I feel as though I can’t breathe.  Make a list.  Prioritize.  What needs to be done?  This past month I have not been as diligent with Emma’s “study room” and she has not been progressing as rapidly as she had been, so I’ll need to figure out how to manage my time better to get back to that.  Emma’s literacy program is one that continues to fill me with hope and gives me energy.  Seeing her progress with her reading and writing has been the single most helpful thing in keeping the fear at bay.  When Emma was stalled out, not moving forward, those were the darkest times.  As long as she continues to progress, her self-portrait, her letter, her writing about going to the zoo, are examples and the things I cling to like so many scraps of wood in the middle of an ocean of fear.  Just keep my head above the water, just hold on, keep treading, keep breathing, it will be okay.  It will be okay.

Make a list.  Check.

Don’t pretend I’m not feeling the fear.  Out it.  Check.

Feel it.  Check.

Keep moving forward.  Check.

I know these things won’t remove the fear, I know they won’t completely eradicate it, but they are the things I know to do that will help, even if not in this next moment, but in the next few hours, the next few days, the fear will dissipate.  It always does.  Take a deep breath.

FEAR = Feel Everything And Remain

To read my most recent Huffington Post, click ‘here.’

To read my guest post on Special Needs.com, click ‘here

Handwriting and the Joy of the Yellow R Train

First off, you’ll notice to the right of these words a blue “badge,” which, if you click on it, will show you a line up of all the blogs nominated for the “Top Autism Blogs for 2012.”  To vote for Emma’s Hope Book, click on the “like” button.  At the time of this writing Emma’s Hope Book was in the #4 position!  Very exciting.

Below is the “story” Emma wrote yesterday morning in preparation for our much anticipated day.

I had to help Em with some of the words such as shower, Elite Gymnastics and she wanted to write – After lunch will go zoo – so I had to help her with that too, but otherwise Emma did most of this on her own.  To recap, a year ago Emma had just finished learning how to form all the letters of the alphabet and we were in the initial phase of beginning to work on reading, writing and typing actual short words.  She’s come a long way, baby!

As her writing stated, after lunch Emma and I went to the zoo.  ”Just Mommy and me, together,” Emma reiterated several times that morning. “Yes, just you and me,” I confirmed each time.  ”Going to take the yellow R train,” Emma said matter-of-factly.  Emma loves the R train.  She refers to it as the “yellow R train,” because the letter R is in the middle of a yellow circle.  All the subway trains here in New York City are designated with a number or letter within a colored circle.  Whenever possible, Emma requests the R train, which is fine, except that this is not the train closest to our home and a few months ago the R train wasn’t running on the weekend, much to Emma’s consternation.  As we made our way to the station, I cautioned Emma that we had to take whichever train came first.  ”Yellow R train!” she insisted.  The very prospect of riding the R train, almost more than she could cope with, caused her to bounce up and down.  She beamed at me.  ”Okay, but Em, if a Q or N train comes, then we’ll take either of those too.”  ”Take the yellow R train,” she responded.  ”Em…” I started, but before I could say more she cut me off and said, “Okay, okay, okay.  Maybe take the yellow R train, maybe not.”  Then quietly she muttered, “Take the yellow R train!”

Another train flew by on the express tracks, so fast I couldn’t tell which train it was.  But Emma knew with barely a glance. “Look, there’s the yellow Q train,” Emma said, pointing as the train whizzed by.  ”Yeah, that’s the yellow Q train with blue seats,” she said.

“What?”

“The yellow Q train has blue seats.”

This was news to me, not the sort of details I notice, but exactly the kind of details Emma notices.  As I was pondering this, Emma said, “Look!”  Then she grinned.  ”It’s the yellow R train,” she said with a kind of reverence, as though greeting an adored and much admired friend.  As the train slowed to a stand still, Emma found us both a seat and giggling said, “We’re sitting in orange and yellow seats!”

“Is that why you like the R train?” I asked.

“The yellow R train makes me happy,” Emma said, before peering out into the dark tunnel and grinning at her own reflection.

And so it does.

Coming tomorrow – The Central Park Zoo and The Puffin.

To read my most recent Huffington Post, click ‘here.’

To read my guest post on Special Needs.com, click ‘here

 

An Easter Party and An Excuse to Wear a Pretty Dress

Emma and I did some work yesterday morning, on her reading, writing and typing.  This is the “story” she wrote:

“I can’t wait for our Easter party!

I am going to wear a pretty dress.

I love to wear pretty dresses.

I am excited to see Max. I am excited to see cousin Alexandra and Jackie too.”

Sadly, I do not have a photograph of Emma wearing her pretty party dress because I got a late start on cooking, what with decorating Easter eggs to resemble farm animals…

and birds…

bird's nest

of all types…

There were chocolate eggs that needed to be hidden for the Easter “Egg” hunt, thankfully Richard did a superb job with that and came up with some very creative places to hide them, including inside one of our speakers, where they will remain lodged forever.  We invited 13 people over due to arrive at 5:00PM  and I was way behind schedule, hadn’t prepared the roasted vegetables, fixed the leg of lamb, prepared the biscuits, the appetizers or the berries and whipped cream and it was already 3:00PM. (Gulp!)

Emma donned her pretty party dress and whirled about while listening to a medley of her current favorites, MIchael Jackson, Dionne Warwick, The BeeGees and Led Zeppelin.  You have to hand it to her, the kid has a wide and varied taste in music!

Emma had been looking forward to our “Easter Party” for weeks.  We had gone over the list of people countless times.  She fixated on a few of those people, talking about them over and over again.  We did a countdown of how many hours until they would arrive.  And then when the first person arrived Emma squealed in delight and raced to the door.  When cousin Alexandra arrived, Emma could barely look at her, she was so overwhelmed.  The same happened when Jackie appeared.  It was as though it were all too much.  The very sight of these much anticipated arrivals was more than she could take.  ”Max is coming!” she said over and over again.  Max had called ahead to inform us that he would be late.
“Yes.  Max will be here in another 20 minutes or so,” we answered.

“Max is late,”  Emma stated, nodding her head and looking sad.

“But he’ll be here soon,” we reassured her.

When Max finally arrived, Emma put her hand in front of her eyes, as though he were as bright as the sun and the glare was too much for her.  Meanwhile I was busy getting the leg of lamb out of the oven and serving everyone a cheddar-chive biscuit.  ”Where’s Em?” I asked Richard at one point.

“She’s hiding,” he said.

I found Emma crouched behind the couch, her head down, almost touching the floor.  ”Emmy, what are you doing?”  I asked.  When she didn’t respond I said, “Come sit with us at the table.”  Reluctantly she sat down, next to Jackie and across from Max.  She kept her head and eyes lowered and wouldn’t look at either of them.

After an hour or so, Emma was able to raise her head and began playing various games with Max.  By the end of the evening she was beside herself with excitement, fully engaged and talkative.  She said good bye to each guest as they departed, and when Max left she walked him to the door and said, “Bye Max!”  and then she blew him kisses.

For more on Emma’s journey, go to:   Emma’s Hope Book

 

Crocuses, New York City Firemen and Emma

As Richard and I revel in Emma’s affectionate embrace, New York City is experiencing an extraordinarily, early spring.  Purple, yellow and white crocuses are peeking out from mounds of dirt in great bursts of color.

This weekend the weather hovered around 60 degrees, today it’s suppose to go up into the 70′s.  The firemen, always good indicators of the temperature outside, across the street from our loft, are wearing shorts.  People are smiling, daylight savings time is in effect and this morning Emma was still asleep when Nic and I left the house.  Short of pinching myself to make sure this isn’t all a dream, as we waited for Nic’s bus to arrive, I couldn’t help but wonder – What’s going on around here?!

In addition to Richard’s beautiful post from yesterday, Emma is making progress in countless ways.  So I’d like to take a moment here to take stock, a kind of inventory gathering of this past year, to highlight how far Emma has come.

One year ago, Emma was struggling with forming the letters of the alphabet.  (I’m not kidding, I just went back and looked at my old notes.)  Today Emma is reading at a first grade level or higher.  In addition, Emma is writing and typing full sentences in answer to questions posed.  Emma knows more than 200 words by sight, she understands punctuation and uses a period, question mark and comma appropriately.  Emma knows to use an upper case letter when beginning a sentence both when writing by hand and when typing.  Emma is learning to use the past, present and future tenses when speaking, writing and typing.  Emma has made a massive leap forward in her use of the correct pronouns.  In addition (no pun intended) she is able to write simple math sentences, adds and subtracts 1, 2 & 3 up to the number 30.  Emma loves doing mazes and connect the dot pictures.  Emma continues to enjoy favorite picture books, but is now reading them herself!  She is no longer simply flipping through the pages, but is actually pointing to the words and READING!  I know, I just said that, but I find this really, very, very exciting.

Emma’s greatest deficit is in her expressive language, but we have been working on that through Dr. Blank’s “Step into Stories” program and through a number of other exercises and work we are doing with her.  Emma is working with Joe after school for a solid two hours and is able to attend during that entire time, with just a few two to three minute breaks throughout.

For the past three weekends, we have taken both children out to brunch at a different restaurant each time and Emma has sat and eaten food from the menu.  Any idea how exciting that is?   We live in New York City, after all.  People here eat out more than they do in, but for us, it’s exhilarating.  She sits in her chair, waits for the meal to arrive, engages with us, and enjoys herself.  Eating out together as a family was not something we have, up until now, been able to do.  One year ago we were having to pack a separate suitcase with the foods Emma would eat whenever we traveled.  Going out as a family to a restaurant was not something we even considered doing.  Emma has slowly expanded what she will eat.  This past Sunday Emma ordered apple juice and made no fuss when it arrived in a tall glass with a straw.  A year ago, not only would she not have ordered apple juice that she was unfamiliar with, but had one of us ordered it, she would have refused to even take a sip without a great deal of protest.  This is the same child who would spend an entire day refusing to drink or eat anything, if it was not familiar and known to her.

In gymnastics Emma is beginning to be able to perform a cartwheel that actually resembles a cartwheel.  She is able to do a hand stand, does jumping jacks on the trampoline and has learned how to touch her toes during the stretching period.  I know, all of this sounds pretty rudimentary,  but for Emma these are monumental leaps forward.

As Richard so eloquently wrote, Emma spent Sunday walking with us, not running ahead, there were no grunting or squealing noises, no sudden bursts of arm waving while jumping about, just walking, arm in arm, sometimes reaching for one of our hands, sometimes stopping to give one of us a hug.  There was a great deal of laughter, playing and interacting while Richard and I floated along on a cloud of joy and gratitude.

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


Richard, Oxytocin, Literacy & Love – Not Necessarily in That Order

Today is Richard’s birthday.  No, really, it is.  That his birthday happens to fall on Valentine’s Day is, in Richard’s estimation, a boon.  The way he sees it, he gets to give to others on his birthday, and that makes him very, very happy.  Because that’s the kind of guy he is.  The way I see it – the whole world is celebrating his birthday AND love of family, friends, and life, most just aren’t aware of this fact.  I, however, am in the enviable position of being privy to the whole Richard’s-birthday-falls-on-Valentine’s-day thing.  So I have yet another opportunity to reflect on how much better my life is with Richard in it.  I can just hear him saying, “Oh go on!”  Pause.  ”No, really.  Go on.  Could you be specific?”

And I will be, just not now.

We began giving Emma a small dose of Intranasal Oxytocin spray on February 5th.  We have been cautiously optimistic, sure that we saw some immediate change – a lessening of some of her perseverative movements, such as whipping her arms around like a windmill and making odd squealing noises while doing so, and an increase in her desire to be with us.  Then we decided we were guilty of wishful thinking and that there really was no difference, only to change our minds and feel that perhaps there has been some small shift.  We intend to wait and see if the changes we think we are witnessing continue over a longer period of time.  (*Note:  we took Emma off the Oxytocin not long after this post, for a number of reasons – there is not enough scientific study to counter  the risks of giving her something we know very little about, coupled with the fact that we saw no change once we stopped.)  It has only been nine days, after all, not long enough to draw any conclusions, but Richard, who readies her for her school bus every morning reported that she went over to him, pulling his hands toward her and has been hugging him more each morning than ever before.  She has also been going over to Nic, trying to engage him in play as well as hugging me much more often.

It must be said, I am the fortunate recipient of most of Emma’s affection, she has always allowed me to hold her, will curl up next to me at night and cuddles with me in the morning.  Still, when I hug Emma goodbye in the morning, I have always had to coach her, “Arms all the way around and squeeze.  Count, one, two, three.  That was a great hug, Em!”  Lately, however, there has been no need to coach her as was the case last night when she came over to me as I was sitting at my computer, put her arms around me and, as she kissed me, said, “Mwah, mwah, mwah, mwah,” between kisses.

Over the weekend we worked on non-content words such as “just”, “still”, “another”, “now”, and the words “look”and “puppy”.  Throughout the day I made indirect commands, something children on the spectrum can find troublesome, such as “It would be great if you could set the table, Emma.”  Or, “I think taking a shower and washing your hair would be a good idea.”  Her response to all our work together was astonishing.  It didn’t seem to matter what I threw at her, she was able to get it.  She even carried a book over to me and while seated next to me on the couch read it from cover to cover.  At the end of our session,  I wrote her this note and gave it to her.

She read the note, tapping the word “proud” with her finger while trying to sound it out, “pra…  pro…”

“Proud.  It says proud,” I told her.

Then beaming, she threw her arms around me and buried her face against my neck.

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