Tag Archives: children with special needs

Siblings – Autism

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

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

Literacy and Autism

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

Hope – Autism

For those of you planning a trip to New York City, you must take in the High Line, New York City’s most creative and interesting park, built on the old elevated tracks on the west side of downtown Manhattan.  The High Line spans more than twenty blocks and eventually will end at 34th Street.  Last Sunday we came upon this art installation at the bottom of one of the High Line’s many entrances/exits.

On each of the little red and yellow tags people had written what they hoped for.  One said, “Cure Ann of her cancer” another said, “I hope I will love Miquel forever”, and still another read, “Please make Mom get better”.

Love and health were the most popular “hopes”.  I would have written one of my own had I’d thought to bring a pen with me – Let Emma live an independent, happy life, filled with loving relationships.  I guess the thing about hope is it keeps us moving forward.  Hope allows us to get through tough times.  I am reminded of the prayer of Saint Francis of Assisi:  “Where there is hatred, let me sow love; where there is injury, pardon; where there is doubt, faith, where there is despair, hope…”  Regardless of ones beliefs, these words have given solace to a great many, myself included.

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

Deficits and Assets – Autism

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

Sunday in Aspen with Emma

Yesterday I spent the entire day with my family.  This was a first since they arrived a week ago.  In the morning I took Emma on the 4-wheeler.  I couldn’t remember how to put the thing in reverse so I made sure we went places which only required forward movement.  The whole shifting gears thing was a bit tricky, so Emma learned quickly that she needed to hold on to me as we galumphed along – something she doesn’t usually do when riding with Richard.

After our ride we took the dogs for a walk.

And on the way we saw this…

Upon further investigation, it turns out it was the desiccated pelt of a coyote or perhaps a deer, hard to tell at this late stage.  My mother evidently found it lying on the path several months ago and hung it on this shrub so the dogs wouldn’t drag it around.  Emma was utterly uninterested and walked right by.

After our walk, we went up on the gondola to the top of Aspen Mountain where a blue grass band played.

On the ride up the mountain, Emma played a game where she went through a list of all our various relatives and added, “cousin” or “uncle” or some other title before their name.  Then she got a little creative and said, “Jungle Andy!”

“No Em!  Not jungle Andy, Uncle Andy,” we said, laughing.

“Uncle Andy,” she responded, then very quickly added, “Jungle Andy!” as we screamed “No!  Not jungle Andy!”  Emma thought this so hilarious that she kept it up for the entire 20 minute ride.  And in truth, it was pretty funny.

After our lunch on the top of the mountain, Emma stood in line to bungie jump.  The weekends are particularly crowded and so we ended up waiting…  and waiting…  and waiting.  For 45 minutes or more, I lost track of how long we waited.  But finally it was Emma’s turn.

After Emma finished bungie jumping we drove out to the Snowmass Recreation Center and swam in their outdoor saline water pool.  Finally we drove home, changed and went to Takah Sushi for dinner.

Emma was terrific.  Not a single meltdown.  She waited the interminably long wait to bungie jump, she went along with all the plans, even when they changed at the last minute due to things beyond our control.  And at the pool, she showered, washed her hair and then for the first time ever, brushed her own hair, completely, without any help from me.  When we went out for dinner that evening, we brought along her food, she ate with us, then played, making faces and being silly.  When it was time to leave, she ran ahead toward the car, never a protest.

Now that’s a great day!

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

Learning

Since the family is now here, I’ve been getting up with Emma, so everyone else can sleep.  Emma typically wakes by 6:30AM and often a bit earlier.  Usually we go downstairs and sit together on the couch.

“Go to other pool?” Emma said this morning.

“Okay, but Joe just drove in from Denver last night, so maybe tomorrow.”

“Go to Glenwood pool tomorrow,” Emma said, nodding her head.

“Yeah.  Maybe tomorrow.  Joe’s probably pretty tired today.”

“Joe’s coming,” Emma replied.

“No.  He’s here!” I said pointing upstairs.  “He got in late last night.   He’s sleeping,” I explained.

“Joe’s sleeping.  Joe!  Can we go to the other pool?  I want to go to the Glenwood pool!”

“Okay, Em.  We’ll ask Joe when he wakes up.  How about doing our work in the study room?” I asked.

“Do study room in Mommy’s bed,” Emma said.  Before I could answer she added, “No, not going to do study room in Mommy’s bed.  We have to go to Mommy’s office just with Joe!”

“Exactly, Em.  We have to show Joe what we’re doing.” I told her.  “We have to wait until Joe wakes up.”

“We have to wait,” Emma said.

After Emma made her toast and ate it, she said, “Go see Joe.”

“We have to wait, Em.  He’s tired.  We need to let him sleep.  Okay?”

“We have to wait,” Emma said sadly.

Eventually Joe appeared and Emma jumped up and down, “It’s Joe!  Joe’s here!  Go to study room with Joe?”

Emma and I are doing the next level of her literacy program.  It’s a big step from what we’d been doing and it’s difficult for Emma.  We watch a video and then do some computer work spelling one word.  It is the same word repeated over and over in the story.  Emma then must find the right letters on the keyboard to spell the word as well as find the word within the story.  Emma does pretty well with all of that, but when we go to handwriting, it’s as though Emma has forgotten all her letters that we’ve been working on over the past few months.

The first day I found myself becoming frightened and by yesterday I felt abject terror.  Terror at the idea she won’t be able to do this next level, frightened that it’s more than her mind can retain.  I imagine she senses my fear in addition to her own anxiety and the whole thing snowballs, making it even more difficult for her.  I am relieved Joe is here, so that he can work with her a few times.  Perhaps his calm demeanor will have a positive effect on her, allowing her to relax enough that she can just concentrate on the work.

“Your fear is palpable,” Richard observed last night.

“I know it is,” I answered.  “I am terrified she won’t be able to learn this.  And then I go off to the next thought and the next, it’s horrible.”

And it is.  But it’s my fear and has little to do with anything that is actually happening.  I must learn to manage this fear as it’s getting in the way of Emma’s learning.  I must compartmentalize it.  My worries are not helping Emma.  I say this in my head while I am working with her – these are my fears, they are not real, they are just thoughts.  They do not mean anything, they are just fears.  They are not real, they are not real.

Repeat as necessary.

The World of Autism

This morning we are going to an open house of yet another special ed. school.   The first time I toured a school for autistic children, Emma had been diagnosed a few months before, in the fall of 2004.  We were still in shock and reeling from the new world we suddenly found ourselves in.  The school had locked doors and a security guard at the front desk.  It was clean with walls painted in cheerful colors.   The unmistakable high-pitched keening cry, a sound one only hears coming from an autistic child in distress, emanated from a number of the classrooms.  I remember fighting back the urge to flee.  All the parents were herded into a little room with cafeteria-style tables and chairs.  No one sat down, as though to do so was more of a commitment than any of us were willing to make.

It was my first foray into the world of special education schools where the parents do not speak to one another with the cheerful optimistic small talk one finds in a regular school setting.  The question and answer period is often marked with parents breaking down in tears mid sentence.  There is an overlay of sadness, often despair, parents (and I am describing myself as much as I am of others) who are still in a state of profound disbelief.  There are always a couple of parents who seem to have made it through the mourning process a bit quicker than the rest of us, the ones who seem to have found a level of acceptance, which the other parents have yet to realize.

Visiting various schools now, is different in that Richard and I know what to expect.  We have gone to so many in the intervening years since Emma’s diagnosis, we are better prepared.  And yet, I am still caught off guard, on those rare occasions when I find myself unable to contain my emotions in the middle of an interview.  The tell tale break in my voice, the constriction in my throat, the flood of tears, which inevitably follow and the attempt to pull myself together.   The admissions directors are so used to this they all have Kleenex boxes prominently placed on their desks.  They take it in stride and are almost always sympathetic, brushing aside ones apologies.  Nothing like a child with special needs to make our facades crumble.  Talking about the weather just doesn’t hold much appeal when your child’s life is on the line.

“But I didn’t realize it was so serious,” someone I know said to me once when I said I couldn’t donate to his charity, citing Emma’s autism as the reason our finances were stretched so thin.

Perhaps when compared to other childhood afflictions, autism seems like lightweight stuff, but talk to a parent with an autistic child and you’ll come away with a different sense.  We are all desperate.  I have yet to meet a parent who isn’t.  Some of us have more acceptance, have managed to find ways to deal with our endless stresses better or are better at putting on a cheery front, dig a bit and the darkness, the pain is always there.

I have a great friend who said to me once, “Don’t take this wrong, but whenever I’m really down about something going on in my life, I call you and feel much better. “

I know what she means.  I have a good friend who’s going through a truly horrific divorce at the moment, everyone’s behaving badly, their child caught in the middle and I feel such relief, because in addition to what we are going through with Em’s autism, we could be in the midst of that as well.  Thankfully we are holding onto each other, leaning into one another with the full weight of our emotions.

“You’re like an ox,” Richard said to me once referring to my healthy constitution.  Then he broke into a rousing rendition of – “She’s a brick… (beat) house, mighty, mighty…” making us both collapse with laughter.

Richard and I are strong and as a team we’re even stronger.  It’s going to take more than autism to bring us down.

Progress

At 2:30AM this morning, Emma appeared at the side of our bed.  “Carousel photos?” she asked, her voice tense with agitation.

“Em,” I began in a quiet voice.

“It’s okay,” she interrupted me.  “Take a deep breath, it’s going to be okay.”

“Yes, Em.  That’s right and right now it’s time to go back to sleep.”

“Photos!” she said with urgency.  It was clear, she felt I was not taking her seriously enough.

“Yes, I know Em.  We will find them tomorrow, I promise, but right now you have to go back to bed,” I said getting up.

“It’s okay,” Emma repeated as she took my hand and allowed me to lead her back to her bedroom where both the lights were on as well as a lit flashlight, lay on her bed, amidst piles of books and photographs.

It looked as though she’d been up for quite some time, before making her way into our bedroom as a last ditch effort to find the missing photograph.

She carefully took her blanket from it’s designated pouch and pushed all the books and pictures from her bed to the ground.  “Time to go to sleep,” she said.

“That’s right Emmy.  It’s going to be okay.”

“No school bus,” she said.

“Yes, you have school in the morning, but it’s time to go to sleep now and we’ll find your photo in the morning,” I said, turning out the light.  I sat with her for a second, listening to her breath.  “I love you Em,” I said and then I left.

As I made my way back to our bedroom, I marveled at the fact Emma was not screaming, not even a whimper could be heard from her room.  She had returned to her own bed, having obsessed about a missing photograph, which months ago would have been enough to set her off for a good two or more hours.  Perhaps even more incredible was the fact she went back to sleep, not to rise again until after the rest of us had awakened.

These are the seemingly small events, which added together create a larger picture of progress.

This morning when I got up I noticed a pile of her photographs on the seat of the armchair in our bedroom.  I picked them up and put them near Emma’s bedroom door.  About ten minutes later Emma appeared, carrying the pile of photographs.  “You found them!” She exclaimed.  Though I knew she meant that she’d found them and her relief was all too apparent.

The Comedian

Emma is a bit of a clown if she’s given any encouragement.
The other night, Emma nodded her head, while pursing her mouth in a kind of lopsided pucker and said, “I know.  You can’t go on the bike carousel.  It’s closed.”  Her tone was one of sorrow, as though she were sympathetic to the situation, but that it was ultimately beyond her control.  “I know,” she repeated.  “You have to wait.  It’s too cold for the bike carousel.”

Forget that I don’t know what “bike carousel” she was referring to.  The only one I know of is in Battery Park and it most certainly was too cold and snowy to go there.

Emma often carries on whole conversations with herself playing the role of child wanting to go somewhere and benevolent authority figure telling her she cannot do whatever it is.  There is a kind of mimicked sadness as she tells herself she cannot do something and even provides herself with perfectly plausible reasons why whatever it is, can’t be done.  It’s what they call in tennis, playing both sides of the net.

“I want to go on the bike carousel!”  Tone high-pitched, demanding, her face animated even lit up with anticipation and then the response, “I know.”  Sadness, apologetic, followed by the reason why this is impossible,  “You cannot go on the bike carousel, it’s too cold outside.”  Then she adds the facial expression with her mouth twisted to the side, puckered lips and the nodding of her head – it’s almost impossible to witness this performance and not see the comedy in it.

The other day we were all in the elevator with Emma when she went through a similar routine,  “I’m sorry,” she said.  “You cannot go on the swings.  That swing is for babies.  You’re too big.”  This last was said with a stern, though sympathetic tone.  “I want to go on the big swing,” this was uttered in a higher pitched voice.  “I know,” she said, nodding her head and giving the look, which made all of us start laughing.

“Emmy, you can’t go on the baby swing!  It’s too cold!” we said.

“I know,” she said sadly, nodding her head again.  It seemed there was a tiny hint of a smile though as she said it.  “You’re too big!”  Then she laughed.

“Em, make that face,” Nic prompted the other night.  He was referring to her puckered lopsided nodding of the head face.  But instead she just looked at him.

“Nicky!” she said sternly.  “Nicky!  Stop talking!”

“Hey Emma, go like this,” I encouraged, mimicking her expression.  When she finally complied she did it and then seeing all of us laughing she joined us and began laughing too.  “I love that expression, Emma.  You’re funny,” I told her.

“It’s funny,” she said.

On another occasion Emma burst into hysterical laughter for reasons none of us could decipher.  “Hey Em.  What’s so funny?” I asked.

“Justice!  Justice slammed the door,” she said before collapsing into peals of laughter.

“Was Justice being funny?” I asked, hoping to get more out of her.

“Yes!” But the moment was over and she wandered off.  Whatever scenario she was remembering, it was one we couldn’t share with her.

A few weeks ago when Richard and I went to her classroom with cupcakes to celebrate her birthday with her classmates we met Justice.  He and Emma sat together during story time.  On occasion one of them would reach over and stroke the others hair.  It was adorable.  Clearly they feel tremendous affection for one another and it was wonderful to see.  Then Justice began singing in a high pitched gravelly voice, making the teacher admonish him for making her ears hurt, as he and Emma laughed and laughed.

Kisses

It was 1:48AM when Emma appeared at the side of the bed this morning.  Ever cheerful she said, “You have to ask Mommy.  Mommy?  Can I come get you in the other room?”

“But Emmy, it’s the middle of the night.”

“Good job asking Mommy!” Emma said brightly.  Then in a more subdued tone she said, “You have to wait til it’s light out.  Is it light out?  Yes!”

“Em, it’s not light out.  Look.  It’s dark.  It’s pitch black,” I said grumpily.  “You have to go back to your room and go to sleep.”

I felt Emma’s face near mine, her breath on my cheek as she bent down and kissed me.  “Kiss Mama,” she whispered.

“Ah, Emmy.  Thank you.  Come on.  Go pee and then you have to go back to your bed,” I said holding her body close to mine.

“You have to go pee,” Emma said as she ran off to the toilet.  As we made our way back to her bedroom she said, “You didn’t wake Nic.  You have to ask Mommy!”

“That’s right Em.  You didn’t wake Nic.  Thank you.  He needs to sleep.”  I held her hand as we walked toward her bedroom.

She hopped into bed, “Mommy!  Can I get you in the other room?”

“No, Em.  You have to go back to sleep in your own bed.  Remember?  You have to try to sleep now.”

Wide-awake and fully alert Emma sat up in bed.  “Mommy?  Mommy?”

“Yes Em?”

Emma leaned over and gave me another kiss.   “Emma kiss Mommy,” she said, proudly.

“Emmy, that is so nice.  I love when you give me kisses,” I stroked her head.  “Now come on, let’s lie down.”

“Mommy stay with Emma?” she asked wriggling down under the duvet.

“Yes, I’ll stay with you for a little while, but you have to go back to sleep.”

“The flushing carousel is closed,” Emma said sadly.  “The horses are sleeping.  Shhhh, you cannot go there.  You have to wait.”

“Are the horses sleeping, Em?”

“Yes.  The horses are sleeping now.  It’s broken,” she said.  Then she leaned over and kissed me again.  “Kiss Mommy.”

An hour and a half later and after many more kisses, Emma finally fell back to sleep, one leg draped over mine, an arm wrapped around my body, her face so close to mine I could feel every exhalation on my face.  As I lay there with her, I remembered how as a baby Emma was so uncomfortable with human touch.  It was as though it was physically painful for her to have skin-to-skin contact.  Now, Emma seeks out what once repelled her.

I read once years ago of a doctor who theorized all children, no matter their cognitive issues had to develop through a specific set of behaviors or would suffer the consequences later on.  For example if the child didn’t crawl, it would show in their development in other unexpected ways, learning disabilities, fine motor issues, etc.  He hypothesized the reverse was therefore true as well.  If a child no matter how delayed, was encouraged to go through a missed stage or came to it on their own, the child would show signs of positive cognitive development elsewhere.

Hope.  One must always hope.

Desperation & Coping (Part Two)

For the first two years after Emma was diagnosed we did an aggressive intervention of ABA (Applied Behavior Analysis) therapy – 40 hours a week with additional speech therapy and Occupational therapy.  Advocates of ABA believe it is the only therapeutic intervention for autism that has any scientific validity.  Others have questioned those studies, claiming Lovaas used only the highest functioning children to obtain his results, which were published in 1987.

Regardless, ABA did not help Emma.  In fact, she “flat lined”.  We were called into the principal’s office of the pre-school she was then attending and were told Emma’s lack of progress was a “red flag”.   While other children at her pre-school flourished, going on to be mainstreamed even, Emma stalled out, unable to generalize the things she learned in the classroom setting, unable to make progress.  I have spoken to dozens of parents whose children have been helped using ABA, parents who swear it was the single most important thing they did for their child, and yet, for Emma, ABA did not help.  It is easy to feel angry, blame the therapy, blame the child, blame something rather than acknowledge how baffling and insidious autism is.

It was around this period when we found Stanley Greenspan and began his DIR/Floortime therapy with Emma.  For more on Stanley Greenspan see “A Tribute to Stanley Greenspan”.

While Emma responds much better to the DIR model, she still continues to confound experts in the field.  She has not progressed as quickly as any expected or hoped.

When Emma was first diagnosed we were given a diagnosis of PDD-NOS.  We were told to watch her, that perhaps she would “grow out of it” or if not, then at least we would have begun an aggressive early intervention program which would undoubtedly have her mainstreamed by the time she was in kindergarten.  This was not to be, however.  Emma was not mainstreamed when she reached the age to enter kindergarten.  In fact, her diagnosis changed to “Autism” and though she was considered “mildly” autistic, by the time she was 7, she was categorized as moderately so.  How to explain this?

We cannot.  None of the “specialists” we’ve seen can either.  The only thing that has really changed is all those “specialists” no longer offer their long-term view of where she’ll be in another few years.  Gone, are the comforting talks of how she’ll soon be mainstreamed, no longer do we hear the cheerful prediction that she’s – “on her way”.

Desperation can make for odd decisions, but for those of us who have attempted to manage our feelings of overwhelm as we do our best to live our lives with an autistic child, it is a feeling we are all too familiar with.  Richard and I have tried any number of remedies. Were I not the mother of an autistic child I would respond to many of the very things we’ve tried with an incredulous shake of my head.  When someone tells me their child has had several hundred treatments in a hyperbaric chamber, I do not think – Poor fools, they really are clutching at straws – I take notes.  How could anyone believe ____________________ (fill in the blank) would work?  We don’t believe as much as we hope.   We will do anything we can to help our daughter.

Desperation?  Probably.

Coping?  Absolutely.

Emma – August, 2010

Emma’s Art

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

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

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

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

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

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

This morning Emma asked, “Paint?”

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

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

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

Hope For Emma?

I have spent several hours starting different blog posts over the weekend and this morning, but have been unable to finish any of them.  I am still raw after the phone call Richard and I had with the director of the Stem Cell transplantation program at Children’s Hospital in Boston and the director of the Stem Cell Research Program also at Children’s Hospital in Boston.  See the previous post below, written by Richard on Friday.  An hour after our phone conversation in which they both expressed their concern with the stem cell treatments we have taken Emma to in Central America we received an email from them saying:  “We know that you are trying to do the best for your daughter, but given the issues we discussed, George and I think that you should not go back for stem cell treatment.”

I am feeling overwhelmed with emotions at the moment which is why I am having such a difficult time writing a post.  This blog is about Emma, not my fragile emotional state and though I have certainly written of the difficulties in parenting an autistic child I have tried to always keep Emma front and center – she is the star of this blog.  And yet, it is hard for me to write about anything at the moment because this blog is also about our hopes for Emma.  At the moment my hope is in short supply.

Research

I’m feeling stunned. Early this morning, Ariane and I spoke at length with two of the pre-eminent doctors in the field of stem cell research out of Boston Children’s Hospital. They not only called into question the theoretical basis of what we had been told about the scientific rationale for the stem cell treatments we gave Emma, but warned us that they had the potential to be “extremely dangerous.”

It is possible that this could be another case of “he said, she said,” and that the doctors who recommended the treatment we have been following are every bit as knowledgeable and experienced as the doctors who were warning us not to undergo another such treatment, but frankly, these particular doctors are so highly credentialed that I have to give their opinions more weight – at least until we have gathered more information from others who are universally regarded as experts in both autism and stem cell research.

They gave us the names of two doctors in the Boston area who are considered to be experts in autism research and (perhaps?) stem cell research as well. It wasn’t clear to me from our phone call that the doctors being recommended were definitely doing research with stem cells, but they are involved with autism research as well as a variety of other neurologically based disorders. I made a promise to myself after the phone call today to stop making assumptions, so until we speak, I’ll just say that I’m looking forward to learning more. I visited both their websites and they have impressive credentials. They are both involved in genetic research so even if stem cells aren’t part of their programs perhaps they have other promising treatments under development.

Perhaps. Maybe. Possibly. I’m filled with doubt and uncertainty as to where we go from here. I do know that we have to keep doing more research, and since the entire field of autism is rife with contradictory theories from highly regarded researchers, we have our work cut out for us. More to come.