Tag Archives: autism spectrum

A Work In Progress

Posted on September 14, 2011 by | Leave a comment

As we have added more work to Emma’s already busy schedule, I have had to adjust my own schedule to accommodate.  Since her new school year began this week, I am now doing her literacy session before the bus comes to take her to school in the morning, while Richard gets Nic ready.

This morning we worked on the word “boy”.  Emma wrote this in answer to my question – “Are these boys?”

“What are they?”

Wait for it…

Yes, they most certainly are!

The beauty of this is that all of it is done non-verbally.  Emma is able to concentrate fully on answering the questions posed by either writing or typing the sentences on the computer.  Today she learned how to use the shift key while hitting the appropriate letter to create an upper case letter to mark the beginning of a sentence.  The grin on her face when she wrote:  “Here are some boys.  They are sitting.” complete with punctuation and upper case letters for the “H” and the “T” was as close to euphoria as one can get.  She even giggled when she was finished and beamed at me with pride.

This is the dress Emma chose to wear to school today.

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

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Tolerance, Despair and Hope – Autism

Posted on September 13, 2011 by | 5 comments

A follower of this blog emailed me this morning about a new app for the ipad called, Pop It.  It’s a “book” that when one shakes the ipad, the perspective of the story changes.  The creator, an artist named Raghava, gave a talk on Ted.com, which is terrific – about perspective and tolerance of others and the role of art and creativity.  Listening to Raghava made me think of a book I am currently reading by the extremely talented and insightful theologian, James H. Cone.  His book – The Cross and the Lynching Tree is a deeply touching and powerful investigation of suffering and hope.  James Cone writes at length about the nature of faith, how God “could make a way out of no way”, how “hope could remain alive in the world of Jim Crow segregation.”

I do not claim to know of the existence, nor can I claim to know of the non-existence of a god.  I cannot even define that word.  It is not a word that holds any meaning for me.  But I do know what it is to struggle with hope.  Hope for Emma, hope for all our children who will grow up to become adults, who many will fear, ignore or just wish would go away.  Our children with autism are often misunderstood, in their inability to fall into line with societal norms they are in turn rejected by society.  The continued negligence and worse, abuse, of people with disabilities is rampant.  Their abuse is done by people who have deemed them incompetent, imbeciles and without value.  This is the common thread that exists in the abuse of all groups of people throughout history.  It is our intolerance of those we believe to be “less than” that makes us believe we have the “right” to punish, shun, ignore, hurt, torture and kill.

James Cone writes:  “The cross is a paradoxical religious symbol because it inverts the world’s value system with the news that hope comes by way of defeat, that suffering and death do not have the last word, that the last shall be first and the first last.”

When I was in my late teens I began using food as a way to quell anxiety and emotions I felt incapable of dealing with.  My overeating turned to full blown bulimia and the bulimia became a way of life – for 22 years.  I remember when I finally stopped, the idea of “surrender” seemed antithetical to all I had, up to that point, believed.  I thought that if I just had more will power I would be able to stop the destructive behavior.  I believed that the bulimia was something I could control.  I believed that my lack of control simply proved how despicable I was, which only served to fuel more of the same behavior.  It wasn’t until I took a leap of faith – really took in that I was, in fact, out of control, that I received a respite from the behavior.  Early in my “recovery” from bulimia someone said to me, “don’t you think that if you could have controlled the bulimia, you would have by now?  Isn’t it true that in fact you have tried to control it all these years and this is where that control has gotten you?”  With a great deal of support from others who had eating disorders and had come out the other side, was I finally able to find a way out from under it.  In surrendering to the fact that I was unable to control it, was I finally able to find freedom from it.

I’m all over the map with this post, but perhaps some of these thoughts will prove helpful to someone else or if not at least encourage thought and conversation.

For more on Emma and our journey through her childhood of autism, go to:   www.EmmasHopeBook.com

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In the Playground – Autism

Posted on September 12, 2011 by | 2 comments

Yesterday while at the playground, Emma pushed a little boy off of a roundabout.  It wasn’t clear why she did this, though it reminded me of a game they played at camp where the little girls stood in line by the pool and then pushed the girl in front into the water.  (I can hear the defensiveness in this sentence, I know. But let me continue.)  The boy was seated on the edge of the spinning circle, like a giant saucer, filled with a dozen other children.  A few children were on the ground pushing, while running to make it go faster.  The children seated within the saucer were shrieking with laughter and then the little boy went flying off.  The child’s mother, understandably upset, was furious with Emma and yelled at her that this was unacceptable behavior.

I was seated with a friend of ours whose son was playing with Nic.  I noticed Nic staring at me with a horrified expression and making gestures with his hands for me to come.  When I reached him he told me what had happened.  “She just pushed that kid off, Mom.”

“Which kid?” I asked Nic.

“That one,” he pointed to a young child being led away by his mother.  “We were all just playing and this one kid was spinning the thing around really fast.  Emma was laughing and that boy was sitting pretty close to the edge and then Emma just pushed him and he went flying.  The mom got really mad and started yelling at Emma.”

“Okay.  Thanks Nic.”

I made Emma get off and had her sit on a bench next to her father.  I told her she was to sit still until I returned.  I then ran after the mother and her son, apologizing and explaining to her that Emma has autism.  I told her how very sorry I was and inquired after her son, who seemed frightened and confused.  I told him Emma hadn’t meant to hurt him.  The mother told me, with an apologetic look that Emma’s behavior wasn’t okay.  I nodded my head and agreed with her.  She then said, “Oh dear, I didn’t know.  I hope I didn’t scare her when I yelled at her, but I was so upset.”

I assured her that Emma was fine and again apologized for Emma’s behavior.  When I returned to where Emma was seated I said, “Emma.  You cannot push other children.  It is not okay to do that.  You could have hurt him.  Do you understand that, Emma?”

“You cannot push,” Emma said, nodding her head.

“That’s right.  You cannot push.”

“Go back?”  Emma asked, pointing to the spinning saucer.

“No.  You can sit here next to me.”

“One minute,” Emma said.

“Ten minutes.  You will sit next to me for ten minutes Emma.  And you may not play on that again.  You can run around and do other things.  And Em, if you push again, you will go home.  It’s not okay.  You could have hurt that little boy.”  Emma looked down at her hands.  “Do you understand, Em?  It’s not okay to push.”  I watched her for any sign of understanding.  She continued to stare down at her hands, which were in her lap.  “Em.  Do you understand?”

“Yes, mommy.  You cannot push.  It’s not okay.”

It is times like these that I feel at a loss.  We so rely on communicating through speech that these sorts of situations feel impossible with Emma.  She showed no sign of understanding, she wasn’t angry, she didn’t seem particularly upset, if anything she seemed completely baffled by the whole situation.  “Emma.  Why did you push him?”  I finally asked.

“You pushed.  It’s not okay to push,” was her response.

One hears about aggression in children with autism all the time.  Emma, when upset, frustrated or angry, usually hurts herself.  Biting her arm or hand is her most common reaction, but a few times she’s thrown something or punched herself in the face.  It is difficult to witness these acts of violence against herself.  It is even more difficult to make her understand why it’s not okay to hurt herself.

But this episode in the playground was different.  Emma wasn’t acting out in anger, evidently she’d had no interaction at all with the little boy she pushed.  What was going through her head?  Why did she push him?  It’s impossible to know.  But I do have a few ideas, none of which dismiss her behavior, but they do explain what may have happened.  Emma craves sensory input.  Often children who crave vestibular movement can be calmed by having ten minutes or so of it.  Emma appears to never be satisfied no matter how much she gets.  Richard and I have had countless conversations with her various therapists about this.  In our neuro-typical world we call people like this “thrill-seekers”.  In the world of autism it’s called sensory integration disorder –

Someone once explained to me that it’s a bit like having a body part fall asleep and the desire to stomp, pinch or hit that body part in the hope of “waking” it. Roller coasters, swings, trampolines, carousels, anything that moves quickly and erratically are Emma’s way of “waking”.  Pushing the boy was not an act or display of aggression as much as it was an unconscious response to her craving more movement.  It may be that he brushed against her by mistake or perhaps he was too close to her or she may not have been aware of him at all.  Unfortunately none of this helps the child who was pushed or his mother.

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

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Asking – Autism

Posted on September 8, 2011 by | Leave a comment

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

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Siblings – Autism

Posted on September 6, 2011 by | 1 comment

Nic is Emma’s older, neuro-typical brother.   Nic is eleven, about to enter the sixth grade and an all around amazing kid.  Having Emma as his younger sister is often difficult for Nic, though he usually doesn’t complain.  The siblings of children with autism are often burdened with responsibilities far beyond their years.  Despite our attempts to encourage Nic not to take on the role of her personal body guard, supervisor and parent, he often does on his own accord.  He can’t help himself.  He worries about Emma.

Nic has witnessed horrific and violent melt downs.  He has seen Emma punch herself in the face, bite herself repeatedly on the hand or arm.  He has stood by helplessly as she screamed and shrieked her frustration at not being understood.  He has joined in countless searches for such bizarre and arbitrary items as a missing balloon string, a piece of packing tape, a scrap of paper, a specific photograph or a microscopic shred of what is left of her blanket.  He has panicked with us when one of us uttered the dreaded words:  “Where is Emma?”

Nic is older than Emma by 21 months, yet he is very much the adult to her childlike innocence.   In an effort to give Nic time to enjoy himself without the stresses that can come with Emma, Richard and I spend at least one day a week with Nic, alone.

So yesterday, instead of going into my studio I asked Nic if he wanted to hang out with me.

“I’d love that Mom,” he said, nodding his head.  “We’ll have some Mom and son time.”

We ended up going to Elephant and Castle (a place that’s been around for almost forty years and where I used to love going when I was in college because of their bowls of latte) for lunch.  We discussed the coming school year, who he hoped would be in his class and what teachers he hoped to have.

“What are the top five things you like best about yourself?” I asked.

“I like that I’m a good person, I’m kind, thoughtful, I care about people, I want to help people and I work really hard.”

“You do!  That’s all so true,” I said.

“I like that I’m an average skateboarder,” he added.

“You’re a really good skateboarder.  What do you mean by that?”

“I like that I’m okay, but not great yet, it gives me something to work toward.  Cause like if I was really great and already knew everything, that wouldn’t be as much fun,” he took a bite of his cheeseburger.  “Mom, you’ve got to try this.  It’s amazing!”  He offered me a bite of his burger.

“Okay, if you could change anything about yourself, what would it be?” I asked.

“I’d be a genius,” he answered without hesitation.  “What about you?”

“I’d be more patient and not so quick to anger,” I said.

“I think you’re perfect just the way you are, Mom.  I don’t think you have to change a thing,” he said, patting my arm.

“Wow, Nic.  That’s such an incredibly kind and lovely thing to say.”

“It’s okay Mom.  It’s true,” he said looking at me and smiling.

That’s Nic – kind, supportive, incredibly loving and thoughtful.

After we had lunch we went to the movies, then took a walk and talked some more.

“This was a great day, Mom.  Thanks for suggesting it,” Nic said as we made our way home.

“I loved it, Nic.  I loved spending today with you.”

“Yeah, me too.”

We walked together in silence for awhile, then Nic said,  “Mom?”

“Yeah Nic?”

“Do you think we could get a dog?”

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

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We Have to Keep Trying – Autism

Posted on September 2, 2011 by | Leave a comment

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

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Literacy and Autism

Posted on September 1, 2011 by | Leave a comment

We have been working intensively with Emma on her reading, writing, typing and more recently math and verbal skills.  The reading, writing and typing program we began in January.  It was at this time that she painstakingly learned how to form each letter of the alphabet.

This morning Emma wrote this, in answer to the written question – Did the cat jump? – after I had made the cat jump.

In answering the question – Did the boy jump? (the boy as seen in this photo was lying in a bed) Emma wrote:

In accessing Emma’s progress, I need to compare her to herself and not other children.  I have seen over the years how easy it is to become discouraged when I compare Emma to her brother or any neuro-typical child or even other children on the spectrum – unless they are much more severe.

“This isn’t going to be a sprint,” Richard once observed, after seeing yet another neurologist.

And it isn’t.  Emma is making slow and steady progress.  We work with her for about three hours every day on her literacy, math and verbal exercises.  There has been no instantaneous miracle.  She has not begun to write on her own in complete, complex and revealing sentences.  She has not gotten to the point where she is able to tell us what it is like for her to be her.  She cannot answer questions regarding anything remotely abstract.  (Which doesn’t mean I don’t continually hold out hope that one day she will.  I do.)  But at the moment, I am happy to reflect on her slow, steady progress and it fills me with joy to work with her each morning and to see these beautiful sentences that she constructs on her own.

Someone once asked me – Is it good enough?

The idea being that I had a preconceived notion of how I wanted something to be and anything short of that meant it was an utter failure.  Sometimes being “good enough” is still pretty fabulous.  So yes – Emma’s progress is good enough.  In fact, it’s better than good enough, it’s wonderful.

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

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Do We Have An Obligation to People With Autism?

Posted on August 30, 2011 by | Leave a comment

The scene in the airplane last week involving the man with autism, has stuck with me.  I keep wondering what the airlines would need to help them cope with situations such as the one we witnessed.  Of course I am approaching this question with the assumption that they are interested in mitigating the damage and distress such a scene may cause, not only for the man with autism, but for the other passengers seated nearby, as well as the flight crew.  At the very least – the airlines and all such companies who may come into contact with persons with autism should be educated enough to know how best to deal with most situations that might arise.  Given the current rise in autism, it seems scenarios such as the one I described last week will occur with increasing frequency.  At the very least, it does seem obvious that when a person with autism has requested a window seat they should be accommodated, just as someone who requires a wheelchair is given an aisle seat.

Why is it that neurological differences are treated any differently than physical?  The answer is –  for the most part neurological issues go unseen.  We cannot see inside the person’s brain and so we make assumptions.  Assumptions that the person has a psychological “problem” or are simply behaving badly because they are – poorly brought up or have emotional problems.  We have words for people like this, most of them cannot be written without using a lot of keyboard symbols.  We have little tolerance for those who seem to indulge their worst desires and allow themselves to act out on those selfish interests.  But what of the people who, like the man we encountered last week, have autism?  Do we not, as a society, have an obligation to these people?

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

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Autism and Traveling

Posted on August 26, 2011 by | 1 comment

Yesterday we flew back to New York city.  Emma is a terrific traveler, content to stare out the window, look at her books and sing songs.  As long as she is able to sit in a window seat, she is happy.

On the flight from Denver to New York, which was already delayed by about a half an hour, we noticed a man speaking in a loud voice to one of the flight personnel.  He was a large man, well over six feet tall, with close cropped greying hair.  I couldn’t hear what he was saying, but it was clear he was unhappy about something, not unusual given the rigors of traveling nowadays.  But as he went on, I noticed a cadence to his speech that was familiar to me.

“Mom, what’s wrong with that guy?” Nic asked me as I watched the scene unfold.

“Don’t know, Nic.”

“Is he autistic?”  Nic asked.

“Maybe.  I’m not sure.”

It was at this moment that we were called to board.  The man, visibly upset and walking with a cane, boarded first.  When we finally settled into our seats, I noticed that same man was seated directly in front of me – in an aisle seat.   The usual parade of harried travelers filed along, as exhausted flight attendants urged everyone into their seats so that we could take off without further delays.  By the time the plane was airborne, we all began to relax.  At a certain point the man in front of me yelled out, “I can’t see out the window!  I can’t see out the window!   Excuse me miss, I can’t see out the window!”

It wasn’t clear who he was speaking to, but it seemed that the woman seated near the window in the row in front of him had pulled the shade down.  Someone then said, “It’s her seat, she can do what she wants.”

To which the man shouted, “I can’t see out the window.  I hate these aisle seats.”

For another hour or so all seemed to calm down until about an hour from our landing when the pilot announced we were in a holding pattern over Pennsylvania and would be for an indefinite period of time.  The pilot then went on to assure us that we had enough fuel for several hours so everyone should relax and he would keep us updated.  But the gentleman in front of me began to get agitated, asking the flight attendant what was happening, what time would we actually land etc.  She explained that we were in a holding pattern and couldn’t predict what time we would actually land.

After she left the man began to shout, “I can’t see out the window.”  People were muttering and saying things under their breath, while the poor man became increasingly upset.  At this point I leaned forward to the woman in his row seated next to the window and asked her if she would mind changing her window seat for his aisle seat.  I explained to her that I thought he probably had autism and was becoming increasingly upset by all the delays and needed to be by the window.  I told her my daughter (happily gazing out the window directly behind her, also had autism and needed to sit in the window seat too.)  The young woman complied and I asked her if she minded if I intervened by telling the flight attendant.  She said that would be fine.  I went to find the flight attendant who was discussing the situation with another flight attendant in first class.  I explained that I thought the man had autism and that my guess was he would feel much calmer if he could sit in a window seat and that the woman to his right had agreed to change her seat with him.

The flight attendant then returned saying to the man, “This nice woman has agreed to change seats with you.”

“I hate these aisle seats.  I told them at the gate I hate these aisle seats.  I was suppose to have a window seat.  I told them I was suppose to have a window seat,” the man said, now standing in the aisle of the plane.

Once he had reseated himself by the window, all was quiet with no further mishaps despite our over an hour delay in landing.

What I find most upsetting about this, is how it all could have been avoided.  The airlines, like so many, do not have any understanding of autism.  How hard would it have been to give this man a window seat as he requested at the gate?  When I went to the flight attendant and suggested he might have autism, she said, “Oh, yes.  He does.”  So it’s clear the airline had been made aware of this and yet, chose to do nothing to help this man.

Sometimes I feel as though I am yelling from the top of a very large building.  WHAT IS IT GOING TO TAKE ?   The lack of understanding around a condition that affects hundreds of thousands of people is mind boggling.   The scene we witnessed could have been avoided had the airlines and it’s personnel had even a vague understanding of autism.

For more on autism and traveling with Emma, go to:  www.EmmasHopeBook.com

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One Last Night

Posted on August 24, 2011 by | 1 comment

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

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What Matters

Posted on August 23, 2011 by | Leave a comment

We are leaving soon.  Back to New York City where our other life awaits us.  The children need to get ready for a new school year, medical forms need to be filled out, bus companies need to be contacted and confirmed, school supplies need to be bought.  Nic will be entering 6th grade and there’s a certain excitement in that.  Emma doesn’t enter a “grade”.  She will be placed in a class with other children on the spectrum, who are near to where she is academically.  I am always filled with trepidation at the start of a new year regarding Emma.  It is difficult not to give in to fears and worries.  Will she excel?  Will her new teacher and classroom be a good fit?

The truth is, Emma has progressed more in the past seven months than she has in five years.  We attribute this to the literacy program we began in January of this year.  We have now added a math program as well as a verbal program.  Emma is working each day for about three hours on these various programs.  It has been amazing to witness.  Progress.  This is the word every specialist we’ve ever spoken to has used.  Is she progressing?  And the answer to that question is a resounding – Yes.  We cannot predict what the future holds for Emma.  We cannot know how far she will go.  But as long as she continues to progress we know we are on the right track. I heard someone say once – Progress, not perfection.  It’s an apt thought for any of us.

Emma at dusk last night

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

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Deficits and Assets – Autism

Posted on August 19, 2011 by | 2 comments

It is easy to see what’s wrong – with the world, with other people, with ourselves.  When Emma was diagnosed with autism we were told about all that was “wrong” with her.  Her deficits were listed with great care:  Her eye contact was weak.  She showed little interest in interaction with others, she didn’t point, she didn’t ask questions about others, she showed little awareness of others, she seemed oblivious to others pain or feelings.  Her verbal skills were delayed, her fine motor skills were delayed, her ability to play, to project, to engage in any sort of fantasy or pretend play was almost non-existent.  The list went on and on.

But what of her assets?  What about all the things she did that showed tremendous creativity and intelligence?  Where was the balance in her many and varied evaluations?

When Emma went to a Special Education Pre-School I met a little boy who couldn’t have been older than three.  He was pointing to all the signs in the building and reading them.  I exclaimed to one of the therapists standing nearby how incredible this seemed to me.  She then told me he was hyperlexic and that they discouraged him from reading as it wasn’t “normal”.

I have never forgotten that.  Here was a child with an unusual ability.  A talent that could be used to further his education and perhaps interests and yet it was being discouraged.  Is that what we want from our children – to be “normal”?  What do we sacrifice in our attempts to “fit in”, to adapt, to be like everyone else?

Emma has a beautiful voice and a love of performing.  If we have guests over she asks to “sing a song” for them as she did last night.  Sometimes she needs to be reminded that the song must eventually end as she can get into a loop, singing the same refrain over and over again.  She hasn’t mastered the whole concept of “losing ones audience”.  But we encourage her singing and desire to perform just as we encourage Nic to practice his Alto Sax and the piano.  Emma has a great many assets, things she loves doing over and over again.  With Nic we use the word “practicing”, with Emma we say she is “perseverating.”  Yet in her perseveration Emma is practicing as much as Nic is.  The difference is, Emma will do the same thing over and over again for hours, whereas Nic will practice for 20 or 30 minutes and move on to something else.

Last night as guests began to arrive, Emma was upstairs in her “study room”, sitting on the floor in her party dress writing.  When I went upstairs, this is what I saw.

She was talking to herself and picking up each piece of paper then reading it before placing it back down and moving to the next.

As we had run out of lined paper, she had made the lines herself, before writing the sentence – The kids can hug.

Now this scene isn’t exactly “normal”, on the other hand very little in our household is.

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

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Emma’s Rainbow

Posted on August 11, 2011 by | 2 comments

One of the wonderful by-products of this mess at work is that I am spending every day with my family.  Yesterday we ended the day with Emma saying to me during dinner, “Go outside with just Mommy?”

“Yeah okay, Em.  We can go outside together as soon as everyone’s finished eating their dinner,” I told her.

Once outside, Nic was already there throwing the frisbee for the dogs.  Emma said, “Hold hands with Nicky?”

“Sure Em,” Nic said.

“Run through the sprinklers with Nicky?”  Emma said, jumping up and down.

“I’ll run through the sprinklers with you, Em.  Here,” he said, holding out his hand.

And then they began to run together.

Through the sprinklers…

And then Emma changed into her bathing suit and they ran again, this time through a rainbow…

And out the other side.

Laughing and together, just the way any brother and sister might.

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

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Posted in Autism, Parenting, Siblings

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Work and Family

Posted on August 9, 2011 by | Leave a comment

Things have been horrific at work.  Tremendous stress and upheaval, but despite it all, my children and family keep things in perspective.  I remember when I first heard the word “autism” and later read how those with this diagnosis tended toward anti-social behavior  I felt terribly sad.  Sad because I thought at the time it meant that Emma would miss out on the things that have made my life most meaningful.  My happiest moments have all been with my family, my favorite memories are all involving family and friends.  But so are Emma’s.  She still asks to go back to California to – “Uncle Andy’s wedding.”  When we’ve told her he won’t be getting married again or at least everyone hopes this to be the case, she says -“Go to California.  Andy’s wedding again?”

We’ve tried to explain that weddings are unusual celebrations, not the sort of thing one does every few years, at least for most of us.  But nothing we say fazes her.  She had such a wonderful time in Napa Valley at my brother Andy’s wedding, she wants to go back, be among my extended family.

My fondest childhood memories are of coming out to Aspen to visit my grandmother.  Her house was brimming with relatives, her brother, my Great Uncle Paul, a number of his children would come for tea every afternoon after skiing.  She had dinner parties, more relatives would descend and close friends were called, “Aunt” and “Uncle” even if they weren’t technically speaking.  The smells of cooking, burst forth from the kitchen, the upstairs always had the distinct smell of moth balls.  I loved going up to her attic and rummaging about through enormous steamer trunks filled with clothing and photographs from another time.

Emma is like me in this way.  She has a phenomenal memory and it is always about people and family that she refers to when she is recalling something she wants to do again from the past.  “Go back to Cape Cod” is one of her more recent requests.  Every summer Richard and I used to go to North Trurro.  We always had friends come and join us, a kind of revolving door of people – there was Kat and Randy, Christian and his girlfriend at the time, Anna.  Emma asks for these people by name, she hasn’t forgotten any of them.

So when things become difficult with work, problems arise, no matter how dire things can seem, it is my family who always bring things back into perspective.

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

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Emma’s Party

Posted on August 5, 2011 by | Leave a comment

Last night we had some guests over for dinner.  Emma, upon hearing guests were arriving, announced, “It’s a party!” before dashing off to her bedroom to don the appropriate attire.  When she returned, wearing a dress my mother wore to dancing school in the ’30’s, we all oohed and aahed.

“Emma!  What a pretty dress you picked out.”

“Look!  It’s so beautiful!” She said bouncing up and down and twirling around.

My mother told us it was a Hungarian dress that had a velvet vest and a faux fur hat, which evidently Emma had chosen to forego.

Emma seated at the dinner table wearing her party dress

Emma loves a party.  She always has.  She has no inhibitions, loves nothing more than to sing and dance in front of a crowd – the more the merrier.   Her love of parties is something I am always surprised by, as both Richard and I were so very shy at her age.  It’s one of those things, like her talent for holding a tune that we joke about.  “She must get that from you,” I tell my husband.

“Not me.  Don’t know where that came from,” Richard will respond.

And if my mother’s in the room, she’ll usually get the credit.  “Must be Mom,” I’ll say, looking over at her as Nic rolls his eyes.

So after dessert (Nic and his Granma made a fabulous cheesecake, which Nic decorated) and the plates had been cleared, Emma ran downstairs in her pajamas and said, “Ready for performance!”  She gestured with her hands for us to gather in the living room and take a seat.  She waited until everyone had sat down before launching into a song, neither Richard nor I had ever heard.  The song whose lyrics at one point are – “I am the thunder, you are the lightening” was sung in a loud voice while she did a little dance.

Emma singing and dancing

When she’d finished she said, “Sing it again?”

“A different song, Em.  You can sing one more song, but it has to be different.”

So she chose an old stand-by, Gwen Stefani’s “It’s my life”.

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

Nic’s cheesecake

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