Tag Archives: autism & speech

Friendships

“Both of us writing this post is fine.  We are working together,”  Emma typed just now.

But first a short explanation is needed:  Twice a week Emma has an in person typed “chat” with her friend, Joey.  Yesterday’s chat was a little different because the person Joey usually writes with on Mondays was ill, so I asked Joey if he’d be okay with me holding the keyboard for both him and Emma.  He gave me the go-ahead and so I alternated between them, each taking a turn to type.

During their chat, Emma did what she often does, which is talk out loud.   Often she will talk about things that happened in the past, as in, “Maddy needs to sit down.  Maddy wasn’t nice to Emma” or it can be about the future as in, “chat with Joey,  get groceries, German, Math, Skype call with Granma, see Daddy, have dinner, sleep, wake-up, Skype call with Dr. C….” Emma wrote, “When my brain gets busy it remembers things that have been said to me or what I have heard.”  I wrote about this recently – Scripts – A Communication Bridge

As Emma and Joey typed with each other, Emma said aloud her nickname for Joey – JoeyAllison.  This is a nickname Emma came up with a few months ago when Joey unexpectedly appeared in the same place that someone named Allison had been, the last time we were in the building.

What follows is their chat, which they both agreed to share on this blog (I added punctuation to clarify with Emma’s approval):

J:  I begin this, you go next, not Monday schedule threw me.

(J. has a daily schedule and his and Emma’s “chat” wasn’t listed for Monday.)

E:  How was your thanksgiving?

J:  Good food I like, how about yours?

E:   Thanksgiving in two parts is the best way to celebrate holiday of gratitude.

(Emma kept saying out loud “JoeyAllison”)

J:  Liking nickname not much, but tolerating since hoping you will find another more likable.

E:   Joeyallison is etched into my brain, so hard to overwrite, but I will try.

J:   Knowing you make an effort helps, thanks.

E:  I don’t mean to hurt your feelings.   It’s meant in friendship.

Later Joey’s mom told me Joey’s middle name, which is oddly similar to the name Emma has taken to calling him.  I told Emma what his middle name was and she said it out loud several times, as though she were trying it out and then said, “good.”  Then she typed, “I will call Joey by his first and middle name to his face, if my mouth obeys, because he’s my friend while secretly saying JoeyAllison to myself.”

Friendship

A Look Back

When Emma was first diagnosed Richard and I decided to start noting her progress in a little leather bound book we entitled – Emma’s Hope Book.  The idea was that it would be just that.  A book filled with hope.  After the first few months of making sporadic entries, we wrote in it very little.  We were immersed in Emma’s “boot camp” of 35 hours of ABA, with therapists coming and going, then there was the speech therapy and the occupational therapy as well as the homeopath, the cranial sacral therapist and the DAN doctor.  In addition, I was caring for Emma’s older brother Nic, who we had decided to keep out of nursery school, (even toyed with the idea of homeschooling both the children) before we knew of Emma’s diagnosis.

A few months ago I came upon the original Emma’s hope book and flipped through the 27 entries spanning the time of her diagnosis – 10/2004 – April/ 2010 when I began this blog.

The first entry was written by Richard in October, 2004.  He wrote:  “Emma said, “Peek-a-boo-I-see-you!”  Pointed to her eyes when I said, “no eyes.”  I said – “Bertie hit you with his tail” and she immediately grabbed his tail.”

In the beginning we looked for any sign of understanding or attempt to communicate, no matter how small.  While other two-year olds know well over two hundred words, Emma said very little.  It was difficult to gauge how many words she really knew, as days would go by with no words spoken at all, then other days she would say half a dozen words that she never repeated.  I now wonder that those words weren’t things she’d heard and was echoing back, but didn’t really know or understand.

In any case, the first Emma’s Hope Book never got off the ground.  It was suppose to be a document of hope, something we desperately wanted to feel, but often had in short supply.  We would hear of some new treatment, a diet, biomedical intervention, or therapy and would feel a surge of hope, only to feel that hope dwindle as the months wore on and she made little if any progress. When we learned of the stem cell treatments in Central America, we felt another surge of hope, which was when I began this blog.  It was intended to show her progress from the stem cell treatments.  By the third treatment, we still hoped stem cells would be the thing that threw Emma out of her “autism” and into our world of “normalcy.”  But whatever progress she’s made from the stem cell treatments is not something we can pinpoint or even know with any certainty.  They may have helped, but they just as easily may not have.  We never saw such a massive uptick that we were left without doubts as to their effectiveness.  This has been our experience with almost everything we’ve tried.  All the biomedical interventions, all the behavioral therapies, all of them have done very little.   Or perhaps it is more accurate to say – None of them have had a huge impact.

But, call us crazy, we keep trying to find ways to help her.  We keep looking.  We try to keep an open mind.  We try to keep our hope alive.  There are days when our hope falters, though usually it is just one of us who feels particularly glum and the other is able to infuse some hope into the conversation.  Every now and then we both feel a lack of hope and that is when we will remind each other to look back.  We look at how far she has come.  The one intervention that has made a huge difference is Emma’s literacy program.  We remind each other that just one year ago, Emma couldn’t form all the letters of the alphabet, now she is writing complex sentences, uses the past tense and is often able to use the correct pronoun in answering a question. She did not know what a math equation was, let alone able to solve one or write one.  We are often exhausted, but even through our exhaustion we are able to enjoy and appreciate Emma in all her Emmaness.   Just as she is.

Emma found this old Halloween Costume of Nic’s and put it on saying – “I’m a monster!”

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

Day 6

Call me crazy… BUT I think we’re seeing some changes.  Okay, I know, I said this after each of the three stem cell treatments.  Though there really did seem to be a slight shift – a change in her speech, better eye contact, longer more complex sentences, a more grounded presence in the world and I don’t think we were wrong about any of that.  I’m pretty sure Emma really did make some progress.  However, here’s my latest theory  (Richard, please refrain from rolling your eyes) – what if the stem cell treatments were helped by the fact that she also wasn’t eating all the dairy she normally ate.  What if in addition to giving her a little boost, the fact that she ate very little and therefore almost no dairy and hardly any wheat contributed to the progress we saw?   What if these food intolerances really are making it difficult for her to concentrate, focus, stay on task, carry on a conversation, maintain eye contact?

Today is the 6th day on Emma’s modified gluten free/casein free diet.  I use the word modified because, according to Dr. D she can tolerate dairy products from sheep and goats.  However she is not allowed to eat anything containing soy, corn or potato.  Which pretty much eliminates all pre-made foods, no matter how organic and gluten free they are, they all, every single one of them, contain either soy, corn or potato and often all three.  In addition she cannot eat anything with chicken eggs as she cannot have the whites, yolks are okay, but not the whites.

I’ve been doing a great deal of baking.  Which is a bit ironic considering how little Emma is actually consuming, but I keep trying to find things she might like.  I also love a challenge.  My mother told me about one of those cooking shows she likes called Chopped or a name like that. I’ve never watched it, but she described how the chefs are given bizarre items such as (I can’t remember what the actual ingredients were on the episode she told me about, so I’m making this up) – sweetbreads, licorice and coca-cola – and told to create something edible.  The chef then whips up some amazing concoction using those ingredients as their base, which looks delicious and the judges proclaim it a work of art.

The list of Emma’s “CANNOT EAT” foods sits on our kitchen counter, where I refer to it, reminding myself that if someone can prepare a fabulous dish with lifesavers and sweetbreads (or whatever it was they were given) then surely I can create something Emma will eat with all the foods she CAN have.  Still it does seem daunting.  And I’ll bet Emma wouldn’t touch any of those dishes prepared by those fabulous chefs, no matter how talented they may be.  Emma is one discerning customer.  Or as my son Nic said in answer to my question as to why he didn’t like the girl who keeps texting him at all hours of the day and night, “I’ve got very high standards, Mom.”  He then went back to playing his video game, involving lots of blood, various weapons no one has ever heard of and screams of agony.

When I first told Richard about taking Emma to Dr. D, he asked, “So what’s the science behind this?”

And the truth is I cannot answer that.  Though the following non-biased paragraph from the website, about.com is a pretty good description of the theory behind foods, intolerances, GI issues and autism:

“Why Does GFCF Seem to Work?

GFCF diets are difficult and expensive to administer. They require a lot of dedication and knowlege, and most professionals suggest that the diet be implemented over at least three months. Given all of this, it’s possible that parents who desperately want to see improvement could report improvement that may or may not actually be present. In addition, many children do gain new skills over the course of three months, with or without special diets.But there’s more to the story than just wishful thinking. Allergies to gluten and cassein are not uncommon, and those allergies often manifest themselves in diarrhea, constipation, bloating and other symptoms. About 19 to 20 percent of autistic children seem to have significant gastrointestinal issues.

If these issues are caused by gluten and/or cassein, then they would certainly be significantly improved by the diet. By removing a source of constant discomfort and anxiety, parents may well be opening the door to improved behaviors, better focus, and even lowered anxiety.”

It may be that I am trying to find improvements that have nothing to do with the change in her diet.  It may be wishful thinking on my part.  It may be that what I’m seeing may have happened had we not started her on this radical new diet. But I began this blog as an honest documentation of Emma, the progress, the lack of progress and everything in between.  Since we began the diet I have seen the following:

Greater sustained eye contact.  Less spaciness and a more solid grounded presence.  An interest in her Dad and a desire to include him beyond what she normally displays.  This morning, when I told her we didn’t have time to finish her study room and that we’d finish it tonight, she said, “Study room later.  We get to show Daddy.”  Now this may seem insignificant to most, but I can tell you, to Richard this sort of acknowledgement is a long time coming.

Emma – last night – October 20th, 2011

For more on Emma’s journey through a childhood of autism, go to:   www.EmmasHopeBook.com

“I Am In Here” – Autism

There’s a terrific new book entitled:  I am in here:  The Journey of a Child with Autism Who Cannot Speak But Finds Her Voice by Elizabeth M. Bonker and Virginia G. Breen.  The title is a line from the poem  Me written by Elizabeth when she was 9.   The story is yet another example of a nonverbal child with autism who was helped by Soma Mukhopadhyay’s Rapid Prompting Method.  Elizabeth’s mother, Virginia has tried any number of therapies with the hope that something, anything will help her daughter.  It is not a story about a cure, but rather a message of hope in the face of continual struggle and perseverance.

Virginia writes about using a three pronged approach in her battle with autism – Mind (academics), body (biomedical interventions and diets) and Spirit (the more difficult concept of something greater than ourselves, which Elizabeth seems to have a solid grasp of.)  The mind, body & spirit concept particularly resonated with me as it was this very idea which captured my grandfather, Walter Paepcke’s imagination when he envisioned a place of contemplation and learning in his creation of what came to be known as the “Aspen Idea” more than 60 years ago in Aspen, Colorado.

I can claim full allegiance to the mind and body portion of this, however I must admit the spiritual piece continues to allude me.  Though a close friend of mine said to me recently that for a person who professes not to believe, I certainly spend a great deal of time thinking, reading and discussing the subject.  She then said, “It’s kind of like the wife who’s husband everyone knows is having an affair.  She’s the last to know.”  When I answered her with a perplexed look, she said somewhat exasperated, “Come on, Ariane.  You’re the most spiritual non-spiritual person I’ve ever met.”

I’m pretty sure she meant that as a compliment.

For more on our journey with Emma through her childhood marked by autism, go to:   Emma’s Hope Book

Asking – Autism

I remember the first time Emma’s older brother, Nic asked permission to do something.  He was about 14 months old and he asked if it was okay to take a particular toy with him to the playground.  It was noteworthy for a number of reasons, but as his mom, I remember thinking how incredible it was that this tiny child understood that if you asked, rather than just did something, chances were you would be able to do whatever it was.  The whole “polite” thing wasn’t part of the equation yet, but it soon came to be, shortly thereafter.

With Emma it was different right from the beginning.  For one thing, she didn’t ask questions as much as demand that her basic needs were met.  Because her language was severely delayed, she would often drag one of us to the refrigerator and indicate what she wanted.  As she didn’t “want” our attention, toys or many of the things other neuro-typical children do, there was less motivation to ask for things.

As Nic grew older his questions became more complicated and interesting.  Suddenly we were discussing such topics as religion, questioning the existence of God and if there was a God, who made him.  Could there be a heaven without a “God”, why did people die, was there life beyond our planet earth, how did we come to be and what was our purpose, where did the earth come from, how is it possible that the universe is infinite and what does that mean, exactly.  Nic also became curious about Richard and my experiences.  He wanted to know if I’d ever felt scared (yes!), whether I was nervous when in front of new people (often), when did I know what I wanted to be when I grew up (that concept continues to evolve), when did Richard and I meet, and the questions have never stopped.

Emma does not ask questions about life and the world.  She has never asked me a personal question.  But she has learned to ask for things that she needs or wants.  Often the question is a demand with an upward lilt added, making the demand more palatable, as in  – “Go to the zoo?”  “See the snake bite boy?” “Apple juice?”  However lately her questions have changed slightly.  It’s a subtle difference, but I have noticed it a number of times in the last few days.  This morning she came into the study (this in and of itself is startlingly new as in the past she would simply ask from where ever she was and then when no one responded because no one heard her, she would begin to scream until someone appeared) but today she found me and said, “Mommy?”  Then she waited for me to respond.  When I looked up, she said, “Can I have a caramel yogurt?”  Again she waited for my response.  This too is different.  In the past she might have asked if I was standing nearby and then after uttering the words she would have raced off, not waiting for a response.  The question was rhetorical.

“Sure Em.  Go have a caramel yogurt,” I said.

To which she ran off, only to reappear a few minutes later saying, “Okay.  Last one caramel yogurt?  Eat one more and then it’s all done.”

“Yeah.  Okay, Em.  That sounds good.  Go have another one.”

“Okay!”  She yelled as she went back into the kitchen.

Last night she found me in the bathroom, where I was brushing my teeth.  “Mommy?”  She waited.

“Yes, Em?”

“Can I watch Winnie-the-Pooh?”  Again she stood looking at me expectantly, waiting for my answer.

“Sure Em.  But first put on your nightie and brush your teeth.  Okay?”

“Okay!”  she said tearing off to change.

I cannot describe my surprise at her actually waiting for me to respond.  This is new and a welcome change.

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com

We Have to Keep Trying – Autism

When Emma was first diagnosed, she was four months away from her third birthday.  Since that fall, now seven years ago, we continue to show up for her in ways we could not have imagined.  As many of you with a child with autism know, engaging your child can be complicated.  Emma cannot have a “conversation” the way her neuro-typical brother, Nic can.  We cannot have discussions with her, there is no easy back and forth of ideas and opinions.  Because Emma is rigid in her desires, outings can become problematic if they are not kept to a strict schedule.  The central park carousel must be ridden and then we must go to the zoo, but only after we have watched the brass animals go around when the clock strikes every half hour.  Once in the zoo we must watch the seals being fed and then go see the penguins, followed by the aging and now blind seal, then the polar bear and finally a visit to the bats, before we can leave.  Often Emma will then insist on a visit to the petting zoo where she is more interested in patting the metal replicas of the animals, which then make the appropriate animal sounds, than the real animals.

When both the children were toddlers we were frequent visitors to the American Museum of Natural History on the upper west side of Manhattan.  During the winter months I often took the children four or five times a week.

“Once the kids are older, I hope never to go to that museum again,” I grumbled to Richard one afternoon after an exhaustive five hours spent there.  “And can we add every playground that exists?”  I added.

And then we got the diagnosis and everything was up for grabs.

My time with Emma now includes listening to music and dancing together, walks and yes, lots of playgrounds, amusement parks, the zoo, the various carousels the city has to offer, swimming, but also reading and her literacy program.  Richard still takes Emma to see “the snake bite boy”, which is Emma’s name for the American Museum of Natural History.  But it is during Emma’s “study room” sessions that I see her progress in real, identifiable and concrete ways.  It doesn’t matter whether I am feeling optimistic or not, the evidence is there, right in front of me.  We have kept a record of those first hours when she was learning to form the letter “a” to now, when she is struggling to write two and three sentences at a time.

This morning was a difficult session.  She was required to write three sentences from memory.  At a certain point I said, “We cannot give up, Em.  We have to keep trying.  I know it’s hard, but you can do this.”

Those words were probably more meaningful to me, than to her.  They would be an apt mantra for me to repeat to myself every morning.

No matter what, we cannot ever give up.  We have to keep trying.

For more on Emma’s journey through a childhood of autism, go to:   www.EmmasHopeBook.com

One Last Night

Sunrise

It’s hard not to feel the overwhelming beauty of life when seeing a sunrise over the mountains, like this one, as we did yesterday.

Emma has asked to go back to our little rustic one room cabin almost every night since we last spent the night there about a week ago.  Since we are leaving tomorrow, returning to New York, we decided last night was our final chance to spend in it.

“Hey Em, do you want to spend the night in the cabin?”

“YES!!!!” she shouted, jumping up and down.  Then she dashed upstairs, returning a little while later carrying her backpack.

Nic opted to stay with his Granma, so the three of us set out, Emma racing ahead of us up the little trail.  When we arrived and had settled in, Emma threw on her nightgown, despite the fact it was only 7:30PM and still light outside.

“Don’t y0u want to sit with us and watch the stars come up?”

“No, not going to sit outside.  Time for bed!”  Emma said snuggling under her sleeping bag.

Richard and I watched as the sun set, whereupon the bats came out.  Just as a bat whipped past us, less than two feet from where we were sitting, Emma appeared.

“Em, did you see the bat?”

“Bats come out.  Bats going to bite you!”  Emma exclaimed, looking up anxiously.

“No.  They eat bugs, Em.  They’re not going to bite you.”

“Okay, okay, sit with Mommy!”  Emma jumped onto my lap, pulling a blanket up around her shoulders.

When we got up this morning and began packing up to return to civilization, Emma said, “Spend tonight again in the cabin?”

“No Em.  We have to fly back to New York on Thursday.”

“Get on the airplane,” Emma said nodding her head up and down.

“Yes, we get on an airplane.”

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com

Empathy and Autism

My thinking on this topic has changed since I last posted about Emma and Empathy over a year ago.  I am not convinced that Emma “has a terrible time figuring out what another person is thinking or feeling.”  Today that is not something I would say.  I often wonder if Emma feels things in the extreme rather than not at all.  I have read a great many articles written by people on the spectrum who describe their feelings and responses to other people’s emotions as being too much for them.

One young woman, Dora, says:  “I often feel things too deeply or have too much empathy and have to run away, not because I am callous, but because I feel so strongly it causes my brain to shut down or freak out.”    Her statement is similar to another woman with autism, who’s amazing mother, Clara Claiborne Park wrote two books about her daughter, Jessy.  She describes how Jessy would cover her ears and could not tolerate certain words because they were “too good”.

When one of us is upset and Emma appears to completely disregard our emotional state, whether by ignoring it or making sympathetic comments, which to our ears strikes us as insincere, I have to question whether our interpretation is accurate.  How can we know what she is really experiencing?  We cannot.    I choose to believe Emma is deeply sensitive to her  own and our emotions, but just as she has trouble expressing herself verbally, she may express her feelings differently as well.

Dora goes on to point out:  “The notion that we don’t have feelings frees up people to commit atrocities against us without accountability.”

When I hear neuro-typical people discussing autism I am often surprised by the conclusions they come to.  How differently might we treat someone if we believed them to be fundamentally unintelligent?  How would we speak to them?  What things would we say because we believed they have a low IQ, lack empathy, could not understand us?  How would we treat them as a direct result of our assumptions?   If we decide a child’s behavior is a form of manipulation or because the child is “spoiled” or because they “think they can get away with it”, do we not treat them differently?  Isn’t it true we can behave in some pretty horrific ways when we make assumptions about other’s actions?  Isn’t it easy to rationalize our behavior when we’ve decided a person or child is “dumb”, “less than”, “inferior”, cognitively unaware”?  And what if all those assumptions we’ve so quickly and easily come to are completely wrong?  How does our response stand up under further scrutiny?  Have we not behaved with callous disregard?  Have we not completely “disregarded” their “feelings”?

For more on Emma’s journey through a childhood of autism and her relationship with her brother, Nic go to: www.EmmasHopeBook.com

Emma in Union Square Park – Summer, 2011

Building Blocks & Autism

Sadly, I have no new photographs of Emma petting Merlin.  After that one brief encounter she has returned to ignoring him.  He seems to take it all in stride, poor kitty.  But it leads me to another topic I keep meaning to write about – building blocks.  Not the literal kind, but the developmental kind.  Children typically go through a series of advancements in their speech, physical abilities, etc.  There are specific physical milestones –  lifting their head, turning over, crawling, standing walking, and on it goes.  A foundation is being laid down which further progress is built upon.

What I have seen with Emma is less a foundation and more a series of seemingly unrelated events.  We see her do or say things never to be repeated or if they are, not for many months or even years.  I’m not sure I would have noticed this, except that I’ve made a habit of noting everything she does and then writing about it.  She pets Merlin and then instead of tentatively reaching out to him again the following day, it’s as though she never spent those few minutes petting him.

It reminds me of when she was just over a year old.  She would learn to say something – “play catch” and we assumed that these two words would now be added to the other words she had, such as ba-bye, dada, ah da (all done), hi, okay and no.  We expected to hear them uttered again.  At the time, knowing absolutely nothing about autism, we weren’t looking for signs of anything being wrong.  When she didn’t repeat – play catch – we assumed it was because she didn’t want to play, not that it was a one time event, never to be spoken again.

When I look at her baby journals, (which I discontinued after she was diagnosed – more about that some other time) the first two and a half years of her life, I am struck by the words she knew by the time she was thirteen months old.  Including the ones I’ve listed above she said, Bertie (the name of our elderly cat), Ma-ma, Nic, and Ra-ra (our caregiver).  I was concerned with her lack of language, but it wasn’t as though she wasn’t speaking at all and then she’d come out with something like “play catch” and I would sigh a huge sigh of relief and push my concerns aside.  Except that she never said play catch again.  The full list of words she spoke as a thirteen month old were either salutations or proper nouns of the main people in her life.  Other than the one time she said, “play catch” she did not use any  verbs or nouns.  It was at around this time, between thirteen and fifteen months of age that she would seem to learn a new word or phrase – “play catch”, but also, “chase me” and “go out”.  Some of them, like “chase me!” she would say many times but at around eighteen months she suddenly stopped.  We never heard her say those two words again.  It was as though there were some sort of black hole sucking all those words and phrases away.

Still we fully expected to hear her say those words again, that she did not was something we didn’t realize until much later.  At the time we were sure it was because she chose not to, as opposed to something neurologically wrong.  Why would one assume something was terribly wrong when she would come out with a new phrase or word the next week?  It wasn’t until we were told she was autistic, and only after much research did I begin to look back on all those hopeful notes from her baby journals and see a pattern.  There was not the steady building of a foundation of words, ever added upon to become an extensive and diverse vocabulary.  Instead there were a few scattered words and phrases some repeated, some never heard again.  Arbitrary words, perhaps she heard us say and repeated, but the milestones were not being reached in the time frame one normally would expect.

What I see now is that Emma is slowly, slowly building a vocabulary, but it is at a snail’s pace and it does not follow a neuro-typical trajectory.  Still she is advancing in her own haphazard way.  Who knows, she may even pet Merlin again.

For more on Emma’s criss-crossing journey through a childhood of autism and my ongoing attempts to make sense of it all, go to:  www.EmmasHopeBook.com

The Bakery

Emma is fussy about what she will eat and drink.  The type of food is sometimes less important than the packaging.  If the packaging changes or varies, even a little the item is rejected.  As with so much in autism it is all about regularity and routine.  Emma is completely thrown by the unexpected when applied to things she is accustomed to.

For the past two years Vanilla Milk from Horizon has been on Emma’s top five list of favorites.  It’s the little milk in a white and purple box with plastic wrapped straw glued to the side.   Except Horizon changed the packaging about three months ago – the colors remain the same, as do the graphics, size, shape and even the little straw. What has changed is they no longer use a coating to make the little boxes appear ever so slightly glossy.  The boxes are now a bit flatter looking.  Honestly, it wasn’t until Emma stopped drinking them, that I realized they had changed.

When we arrived in Aspen, we had a case from Christmas in the mudroom with the original packaging and Emma immediately grabbed one.

“Vanilla Milk!”  she said with pleasure.

We are nearing the end of that case and so she will boycott them once again.  Not that I care much as they are one of the least healthy things she consumes, but I do mind that she won’t eat the Cheerios we buy here, haven’t figured out why.  We bring her special bread with us, which we cannot get out here and her jam, so it was with some dismay when she refused to eat any of those things this time out, as well.  Last night I asked her what she wanted for dinner.  I told her what I was having and asked if she wanted some.  She always answers no, so it wasn’t a big surprise when she again said, “No?” as though it were more of a question, than a statement.

“Okay, so what would you like?” I asked.

“Bread,” she announced and handed me two pieces of her bread, which she had buttered and placed together, like a butter sandwich.

“Oh!” I said with surprise.  “You don’t want it toasted?”

“Yes.  Toast.”  Emma said.  Then she handed the bread to me and said, “Put it in the bakery.”

“In the bakery?” I repeated, looking around, wondering what she meant.

“In the bakery?” she said again gesturing at the oven.

“Oh!  You mean the oven.  You want me to put it in the oven to warm.”  I am often amazed by Emma’s creativity in her choice of words.  She has seen me bake bread in the oven.  She knows bread comes out of the oven and more often comes from a bakery.

“Yes.  Make it nice and warm!” Emma said.

“In the oven,” I said.

“In the oven,” Emma repeated.

“We have to heat the oven first and then we can toast it.  But we have to get a cookie tray to put it on, otherwise the butter might drip out,” I told her.

When her bread was done, I opened the oven.

“You have to stand back,” Emma said sternly.

“It’s okay Em.  Here, I’ll take it out and you can take it to the table.”

After Emma ate her bread she said, “Another bread from the bakery?”

“Yes.   We can do that.  You make it and I’ll put it in the oven.”

“Make it nice and warm,” Emma said.

Tiny Steps

I keep waiting for the kind of miraculous progress you only find in movies or works of fiction.  Every now and then I’ll hear a story about a child who has recovered (or as they say in the field – lost their diagnosis) but these are so rare they fall into the category of fantasy in my mind.  Every now and then, when I find myself longing to wake up one morning and have Emma jump into bed with me speaking in full sentences, a look of cognition unmistakable on her face, I must remind myself of all the steps, the tiny steps of progress she makes everyday.  It isn’t just about making myself feel better, it’s about charting her progress.

Last night she went over to the phone in the kitchen.

“Hey Em.  Do you want to call Daddy?” Joe asked.

“Call Daddy?” Emma responded in her typically enigmatic way.

“I’ll say the numbers,” Joe prompted.

Emma dutifully found the right buttons to push and held the receiver up to her ear.  “Hi Daddy!”  Pause.  “Hi Daddy!”

I stood next to her, wondering if she’d gotten the answering machine.

“Hi Daddy!”  Emma said again.

I tried to listen to see if I could detect Richard’s voice.  I didn’t hear anything.  “Did he answer?” I asked Joe.

“Yeah.  He picked up.”

“I’m fine,” Emma said.

Silence.

“Yes.  Glenwood rec center.  Swimming, ice skating,”  Emma said into the phone.  A clear response to the question – What did you do today?  “Sledding, skiing…”

“No, you didn’t ski today,” I interjected.

“No skiing,” Emma said.  “Sledding.”

By this point I had my ear next to her cheek and could hear Richard’s voice.  “I miss you, Emmy,” I heard him say.

“I miss you, Daddy,” she said.

The conversation went on a bit longer, but I was so overcome by the fact she’d said – I miss you Daddy – in response to him saying, I miss you.  Usually when Emma repeats us she repeats us in total.  In other words she would say – I miss you Emmy.  An exact replica of his sentence to her.  But she didn’t do that.  She responded appropriately with the appropriate pronoun.  I was impressed.

I know this is small, but to us, it’s HUGE.  A huge step for Emma to express emotions regarding another person.

Later I said to Richard, “That was completely unprompted!”

“Really?” he asked.

“Yes!  I wasn’t prompting her to say anything,” I told him.  “She said it all on her own.  It’s the Aspen air out here,” I said, referring to our theory that there’s something in the air out here, which seems to inspire an uptick in her language and cognition.  We have seen it every time we come here.  Blame it on Aspen, blame it on all the exercise she gets out here, blame it on anything, we’ll take it.

Visiting

“It’s Mommy!  Mommy come to visit!” Emma said this morning when she saw me.  It’s an odd feeling to have one’s own child, a child one lives with and sees on a daily basis, exclaim with apparent happiness that I’ve come to visit, especially when I am in my own home.  My first thought was that as Richard and I went out the night before and I only saw Emma for a brief period before we left, she was indirectly expressing her feelings that I haven’t been around enough.  Then I began to feel guilty and consoled myself with the fact that I will not be going out again in the foreseeable future.  “You came to visit!” Emma said, cutting through my thoughts.

“Well it’s not really a visit, when I’m here all the time,” I said in an effort to clarify and unburden myself of just a little guilt.

“It’s Mommy!”  Emma repeated, as though she were surprised.

It reminded me of a time not long ago, when Emma on one of her perseverative loops of anguish, kept running through the house crying out something none of us could decipher.

“What is she saying?” we asked each other more than a few times.

Emma’s upset became more extreme and ended with her biting herself.

Someone (it may have been me) then asked, “Why is she doing this?”

I remember thinking, “Umm, because she’s autistic?  Do we really need to look much further?”  But I didn’t say it out loud, okay so maybe I muttered it under my breath.  The point is, applying my own reasoning to Emma’s behavior usually doesn’t get me very far.  And often it is counter-productive.

“You came to visit!”  Emma repeated again.

“No Em.  I live here.  You visit someone when you go to their house, a different house to see them for a little while or when they come here, to our house, but then leave, then they visit you.”  Okay, so it wasn’t the best explanation I’ve ever come up with, but it was the best I could do in the moment.

Emma stared at me for a moment and then said matter-of-factly, “Have breakfast now.”

“Right,” I said.  Too much information.  Got it.

When Emma and I were in her bathroom, getting ready to brush her teeth, she stood on her little stool and while looking at herself in the mirror, put her arm around my neck, pressing her cheek against mine.  “It’s Mommy!” she said, pointing to my reflection.  Then she gave me a kiss on the cheek.

It was one of the moments you wish you had a remote control to hit the pause button on.  I thought of how it was such a typical little kid thing to do, how wonderful it was to see her do something like that.

“Let’s go visit Nic,” I said after she’d finished brushing her teeth – meaning we should go find him, see what he was doing.  And I caught myself.  I understood how and why she said, earlier – I was “visiting.”   Emma was hearing the word used and applying it as best she could in a similar situation.

Intelligence

How can we know what’s really going on inside of a child’s mind who is unable to adequately express themselves?  For neurotypical children we have tests, we ask questions – all verbal or written ways of finding out what they know, whether they’ve learned whatever it is we are trying to teach them.  But what of non-neurotypical children?  How can we really know what they know?

It is this question which causes more confusion than perhaps any other.  Our methods of rating intelligence are deeply flawed.  IQ tests are notoriously incorrect when attempting to gauge the intelligence of a non-verbal person.  Over the years other tests have been created to gain a better idea of intelligence, but nothing we’ve come up with can adequately give us an accurate view of what these children know, what they may be thinking if they could only express themselves.

When confronted with a non-verbal person most of us immediately assume they do not understand and conclude they are not very bright.  Have you ever been to a country whose language you do not speak and noticed how you are treated?  Often it is as though you were an imbecile.  People tend to repeat the same words over and over again, turning the volume up in the mistaken belief your problem is one of hearing as opposed to understanding or being unable to verbalize a response.  We rate intelligence by verbal acuity.

Every now and then we hear of communication devices children have been taught to use, allowing them to communicate in ways they had not been able to previously.  We are astonished at what they say, how lucid and mature they sound.  I’ve read numerous accounts of sessions in which children “speak” to one another in complex sentences, children we would never assume had it in them.  Just because we cannot understand doesn’t mean the person we can’t understand isn’t intelligent or has nothing of interest to say.  All it means is we are not able to understand them.

When Emma was diagnosed with autism at the age of two years and eight months, much of the evaluation conducted by the therapist was directed at us. I remember at the time thinking the process a curious one.  They were evaluating our daughter by asking Richard and me questions which we often had very different answers to.

How many words does she speak?

“Between ten and fifteen,” I’d answer.

“No, no, she knows many more than that,” Richard would say.

And the truth was she did know a great many more than she was articulating, but the actual word count of recognizable words was probably closer to my answer.  So whose answer was more accurate?

Most of us want to feel understood and heard.  Can you imagine what it must be like to know that no matter what you said, it would be met with confusion?  Can you imagine trying to make your needs known only to have them ignored or misunderstood?  Can you imagine what it must be like to have a very complex thought process only to realize no one understands you?

I cannot imagine.  Everyday I am with Emma, I try to and I cannot.

What I do understand is how very lonely it must be.

Snow Day

Our son Nic has been anticipating this day ever since a month ago when a snowstorm was predicted, but never arrived.  When he woke this morning he had a huge grin on his face.  “It’s a snow day!?” he half asked, half shouted with glee.

“Yup!  It sure is,” I smiled at him.

“Yes!” Nic said, pumping his fist in the air.

“Hey Em,” I said, looking over at Emma who had returned to the comforts of her own bed, having gotten into ours earlier.  “Are you excited it’s a snow day?”

“No school bus,” Emma said in a worried tone.

“That’s right.  No school bus.”

“It’s a snow day!   Do you know what that means, Em?”  Nic asked.

“Yes,” came Emma’s reply.

“Really?  What does it mean?” I asked her, curious to know if perhaps she’d picked up on some of Nic’s excitement and had overheard our explanation that Mayor Bloomberg had declared it a snow day.

Emma snuggled deeper under the covers and said nothing.

“It means there’s no school today because of the snow storm,” I told her.

Interruption alert

I wish to take this moment to say – when we received the THREE phone calls this morning at 5:00AM informing us Mayor Bloomberg had officially declared today a snow day and as a result all public and private schools are closed, I muttered something derogatory about New York City being wimpish and if they wanted to see snow, they should really take a look at what constitutes a “snow storm” in Colorado.  And then fell back asleep feeling more than a little self righteous and indignant.  Upon waking later when Emma crawled into our bed declaring, “someone turned the lights on outside”, I learned Central Park received 19” of snow over night.

“Wow!  Really?  That’s almost a storm by Buffalo’s standards,” Richard commented peering out the window.

When I told him what I was writing for the blog he said, “Yeah, you might want to temper your indignation.  That’s a lot of snow.”

Interruption over

“Yes!” Nic said again.

“No school bus,” Emma confirmed, nodding her head.

“Exactly.  No school bus, no school, no…”

“Stay home,” Emma cut me off.

“Yes, stay home,” I agreed.

“So what do you guys want to do today?” I asked.

Nic said, “Stay home” just as Emma shouted, “Go sledding?”

“Okay.  Stay home first and then sledding,” I suggested.

“Snow day,” Emma said.

“No Braid!”

Combing through the tangled knot that was Emma’s hair this morning, she cried, “I don’t like hurt.  Ouch, use brush.”  She grabbed the brush next to her and began brushing her hair.  Only Emma’s “brushing” her own hair consists of placing the brush arbitrarily on some portion of her head and pulling down, which is fine if her hair isn’t tangled.  If her hair is tangled, as it was this morning, Emma’s attempts to brush it, only serves to make it more so.

“Okay, Em.  I’m sorry, I didn’t mean to hurt you,” I said, plying the brush from her.

“It doesn’t hurt,” Emma responded.  Which meant it did hurt.

“Here, I’ll use the brush, see?” I said, being careful to not pull on her hair.  How about I make a braid today?”

“NO!  No braid.  Ponytail!”  Emma cried grabbing the brush again.

“Okay.  How about I make pigtails?” I asked.

“Yes.  Pigtails!” Emma said.  She made her hand into a fist and put each fist on either side of her head, indicating where she wanted the pigtails.

“Perfect.  I’ll do that,” I promised.  After I put the pink frilly hair ties in place I said, “Let me see!”

Emma turned toward me and tossed her head from side to side making her hair whip around.  With a huge grin, she shouted,  “Pigtails!”

“Oh Emma you look great.  I love those pigtails.”

“You’re so pretty!” Emma said jumping up and down.

“Yes you are.  Now let’s go brush your teeth.”

When we went into the bathroom, Emma looked at her reflection in the mirror.  “Look at you!” she squealed, grinning at herself.  “You’re so cute!”

As we left to catch her school bus, Emma carefully put her hat on over her pigtails, only the pigtails were so high on her head it made her look as though she had little horns.  I smiled at her as we got into the elevator.

Emma jumped up and down and waved her arms while making a kind of whooping noise, something she does when she’s excited.

“Are you happy?” I asked, smiling at her.

“Are you happy?”  Emma repeated.   After a pause, Emma shouted, “YES!”