Tag Archives: autism children

Autism and Jaundice

I have a photo shoot this morning so this post will be brief.

My mother reminded me the other day that when Emma was born her eyes were slightly yellow.  I remember asking the mid wife about it and being told not to worry too much.  Within 48 hours Emma was fine.  A new study has come out suggesting there may be a link to babies born during October – March with jaundice and autism.  Emma was born in January.  Dr. Sandy Lowe told us several years ago he thought autism maybe due, at least in part, to a virus contracted by the mother during pregnancy.  I had a cold I could not shake for almost six months while pregnant with Emma.  I have also read articles speculating more children who are diagnosed with autism are born during the winter months.   For those who are interested, Google autism & jaundice for a more thorough review of the Denmark study.

Societal Subtleties

Emmy, I’m leaving.  Have a good day with Joe,” I said, as I was getting ready to go.  I went over to where Emma lay under the duvet in our bed with her earphones on listening to one of her favorite songs, The Beatles – Happy Birthday.  “I love you, Em.” I said as I bent down to kiss her.  She turned her head, as she almost always does, so that I kissed her forehead.

“So much,” Came Emma’s muffled answer.

“I love you so much,” I said, kissing her cheeks.  Emma said nothing in response.  I waited for a few seconds, “Em, you say – I love you Mommy.”

“I love you…” Emma looked at me as I pointed to myself.  “Emma,” she added smiling.

“Not Emma!” I said, kissing her again.  “I love…” I pointed to myself.

“Mommy!”  Emma finished.

“That’s right Em. I say – I love you Emma and you say – I love you Mommy!”

“I love you Mommy!” Emma echoed, before ducking her head down under the covers.

I went out to the living room.  “Bye Nic.  I love you.”

“I love you too, Mom,” Nic said without hesitation.

Just another morning in the Zurcher-Long household, such simple things we so easily take for granted, are stumbling blocks for Emma.  It’s not only pronouns that trip her up.  It’s the simple human niceties we do and say to one another that mystify her too.

After months of prompting, Emma now will say, “I’m fine” in answer to, “How are you?”  She understands the rote answer is what is expected and what will suffice.

“Most people really don’t want to know how you really are,” a friend of mine said to me once.  “They’re just asking because it’s expected and they don’t want to seem rude.  But can you imagine if you answered them honestly.  You know, by saying something like:  Not so well.  I’m struggling with some thorny issues I’d like your advice on.”

I interjected,  “Or – let’s sit down, this may take a few minutes.”

“Exactly, I mean that’s why everyone goes to a shrink,” my friend said matter-of-factly.

A Cry For Help

“Mommy!  I need help!” Emma said last night at 3:30AM.  Her cheeks damp with tears, her face conveyed the discomfort she felt.

“Here Em, try to yawn.  Go like this,” I said opening my mouth wide and moving my lower jaw from side to side.  We’ve been over this, countless times in the past week.  It was the same dialogue, just a different day, different hour of the night.  I became aware of the pressure in my own head, making my ears pop.  The air pressure outside must have changed during the night I thought.

Emma has become hypersensitive to any slight change in air pressure.  She tries to pop her ears by holding her nose and blowing, turning her face red until the pressure is alleviated.  Sometimes her method seems to even work.  One of us taught her to do this on an airplane once, I can no longer remember when or which one of us.  But it served its purpose and now she’s convinced it will help any time she feels any pressure.  The problem is, it also appears to cause the uncomfortable sensation and exacerbates the pressure when we are firmly on land and not flying in an airplane.  Explaining this to Emma has not proven helpful.  She cannot understand the subtleties of the situation.  When in an airplane hold your nose and blow out, when on land try to yawn.

“Mommy!  Mommy!”  Emma cried.  Her eyes searched mine, panic rising.

“I know baby, come here,” I said.  I tried to massage her ears by pulling gently on the lobes.  I pretended to yawn hoping this would produce a yawn from her.  It did not.  Emma does not yawn in response to seeing someone else yawn the way most of us neuro-typicals do.  When I yawn, Emma watches me and continues doing whatever it is she was doing before I yawned.  I found my mind going off on a tangent about what this means, mirror neurons and the like.

“Mommy!  I need help?” Emma said this last as though it were a question.  As though she were asking – Do you need help?  Instead of what she means, a demand for some assistance, a plea to have her mother make the pain go away.  Except I cannot make the pain go away, I can only try to get her to yawn.  I tried again.

“Do this Em,” I pretended to yawn, only this time I actually did yawn.

Emma watched me intently.  She opened her mouth and breathed out.  She could not make the connection.  She wasn’t able to make her ears pop, she was unable to reduce the pressure even if only momentarily.  Emma held her nose and breath, pushing her cheeks out, like a trumpet player.

“There.  That’s better,” she said.  A second later she was at it again, crying and requesting help.

I stroked her head and tried to talk in a soothing tone.  “It’ll be okay, Em,” I said, unsure what else to say or do.

Emma nodded her head.  “You have to yawn,” she said.

“That’s right Em.  Try to yawn,” I agreed.  I waited a few seconds then asked, “Is it better now?”

“Yes.  Better,” she said.  “Time to go to sleep.  It’s okay,” she said, snuggling down under the sheets.

“Yes.  Good idea.  Try to sleep,” I said.

As I write this I am aware of the continued pressure in my head.  I wonder if I have this feeling all the time, but just shut it out.  Now I too am hyper aware of the sensation.  Not painful exactly, but uncomfortable.  I imagine what it would feel like if I didn’t know it was due to the changing weather, the fluctuating air pressure.  I do not panic when I feel it because I know it will go away of its own accord and it’s not intolerable.  But what if I couldn’t understand what it was?  What if I couldn’t understand the explanations given to me?  What if it was just something that happened, seemingly arbitrarily, with no remedy?

Would I panic?  Would I cry out for help?

Yes.  I would.

Exhaustion

The vicissitudes of our daily life with Emma require a certain degree of hope in order to stave off the depression lurking in the background.  I need a plan of action, something I can refer to when I am tired, when my defenses are down, when I feel my grip on that tenuous thread of hope beginning to loosen.

At the moment I am reading about RPM – Soma Mukhopadhyay’s Rapid Prompting Method for autistic children, which gave her non-verbal son Tito a voice.  I have watched the videos, have read her book and am now rereading the book while taking notes.  I am on a waiting list to go with Emma to Texas to have a four-day session with Soma.  In addition I have just started reading Dr. Howard Shane’s book – Visual Learning.  I need to be alert while reading as the subject matter is dense and I have difficulty taking it all in.

Emma continues to wake the entire family at all hours of the night, resulting in all of us being exhausted, relying on caffeine to get us through the day with no end in sight.  Poor Nic, who is not allowed to drink caffeine, has to muddle through as best he can.  It is certainly affecting his ability to concentrate at school.

“We don’t have a plan,” I said to Richard this morning.  “We need a plan of action.”

But the truth is, I need an infusion of hope.  Like an IV – hook it up and let it drip into my veins.  Hope is the thing, more than anything else motivating me to keep pushing ahead.  Hope is the lens through which the world can seem grey and dull or bright and cheery.  I need hope.  So I think about the phone call Richard had yesterday regarding Emma’s last QEEG.  We had the brain scan done the day before we left for Panama for her second round of stem cell treatments.  Our conflicting schedules have made it impossible to meet to go over the results.  Richard is meeting with one of the doctors this Friday.  The doctor told us he thought there were some interesting things going on with that last scan.

So we wait and we hope.

Autism and the Family

“Mom! “ Nic’s cries could be heard throughout our home.

“What is it, Nicky?” I asked.  It was 1:00AM.  I could hear Emma whimpering.

Nic began to cry.  He stood in the middle of the living room, pointing toward his bedroom.  “She’s in there, she woke me again,” he said before bursting into tears.

“Oh, Nicky.  Come on.  I’ll get her out of your room,” I took his hand and led him back to his bed where Emma lay.

“Emma!  This is not okay.  You may not wake up Nic!”

“Nic’s room, bye-bye!”  Emma said cheerfully.  Then she began to whimper.

“That’s right.  You may not wake up Nic.  Go to your room,” I said.

“No.  Not going to wake up Nic,” Emma said.

The night before Emma woke everyone by screaming in the middle of the night.  It was similar to being woken by an air raid siren, jarring, disconcerting.  The shrieks were deafening.  We punished Emma by not allowing her to have her beloved pancakes the following morning.  Even so, she seemed not to fully understand the connection.

Emma’s nocturnal awakenings affect all of us, but so do her public melt downs, her inability to communicate, her inability to understand and empathize with others, her limited food choices, her inflexibility.

Perhaps of all of us, it is hardest on Nic.  He is the one who gets the brunt of our impatience.  It is Nic who feels the weight of being expected to be the “normal” one, who understands and feels our stress, who feels fury with Emma for her very public displays, which he finds increasingly intolerable and embarrassing.  He longs for a “regular” sister, one he can play “hide and seek” with, one who will play card games with him.  One he can talk to.  As exhausted as Richard and I are by our sleep- deprived nights, we do our best to plod along.  We talk with one another, lean on each other.  We rely on gallows humor when everything seems bleak.  And while we encourage Nic to talk honestly about his emotions, I wonder whether he really feels he can.  I wonder whether he doesn’t feel he is placing yet another burden on us, and censors his thoughts and feelings.

For several years after Emma’s diagnosis Nic went to see a child psychologist.  A year ago he requested that he not go any longer.  We spoke with him at length and promised him we would not force him to continue seeing her if he didn’t want to go back.  Since then, I have asked him several times whether he’s sure he wouldn’t like to return or find a new therapist, he has continued to say no.

I have learned over the years, that as bad as things are or seem:  a) they can always get worse, b) they can seem worse than they are and c) one can always shift ones perspective ever so slightly enabling one to see things differently.  I have found when I am able to achieve a more balanced perspective I am better able to cope.

Emma has changed all of our lives dramatically.  She has pushed each of us.  Sometimes it feels to our breaking point, but we have all survived thus far.  Emma forces me (I will not presume to speak for any of the other members of my family) to pay more attention.  I appreciate small gestures, small acts of kindness more than I did before Emma’s diagnosis and it inspires me to do the same for others.   For instance, I am constantly aware of how hard my husband, Richard works to help her, to help Nic, to help me.  He is a rare breed, fiercely ambitious, a visionary and yet places his family firmly first, not just in thought, but in his actions.  He believes in equality and behaves in accordance to those beliefs.  He is as strong a man as I have ever met, giving both emotionally and physically of himself.

Emma has taught me to see the world differently.

And it is beautiful.

“It’s Light Out”

Good job waiting til it’s light out.  You didn’t wake up Mommy.  High five!”  Emma said this morning as I was getting dressed.

“But Em, you did wake up Mommy.  Remember?  You were crying in the middle of the night for Mommy,” I said.

“You have to pull on Mommy’s robe.  Mommy!  Can I come get you in the other room?”  Emma said looking at me sadly.

“No Em.  You have to try to stay in your own bed at night.  You have to wait until it’s light out,” I said, peering out the window at the decidedly unlit grey sky.  Rain pummeled the sidewalk below.  How confusing this must be to Emma.  After all it was not light out this morning at 6:30AM when all of us needed to get up and begin our day.  In fact, it was extremely dark.

Last night in addition to her ears bothering her, Emma managed to lose her scrap of what was once a blanket, which she calls “Cokie”.  The 2:00AM wake up call reverberated throughout our home.  I have a vague memory of waking up, confused and saying to Richard, “Is that Emma screaming?”   When we are in Colorado Emma’s middle of the night screams sound similar to the coyote, who kill their prey out in the field below our bedroom window.

“Yup,” Richard said wearily.

“Okay.  I’ll get her,” I said, donning a bathrobe.

“You sure?”

“Yeah.  I’ll try to get her back to sleep,” I answered.

When I went into Emma’s room she was sitting on her bed with all the lights on crying, “Cokie!  Cokie!”

“Okay, Em.  It’s okay,” I said.

“You have to look,” Emma said, helpfully.

“Yes.  We have to look.  I’ll help you,” I said, digging around under her bed.  “Here it is, Em,” I said holding up a tattered strip.

Emma grabbed her Cokie from me and began sucking her thumb.  “There you are!  There’s Cokie!”

Last night Richard and I, having missed the unusually early starting time of Bloody, Bloody Andrew Jackson, managed to get tickets for Next to Normal.  Knowing nothing about the play, we took our seats with no expectations.  The play was brilliant.  The subject matter though surprising, about a mother who is bi-polar and the burden this places on the rest of the family, is beautifully depicted.   Throughout the play I thought of Emma and Nic.

During the first act the mother goes to her psychopharmacologist who tells her it’s an inexact science and later when she again complains about the drugs she has been given, he tells her there is no cure, but asks her to stay with him and not give up on the meds.

While we have not put Emma on medication, we have tried any number of other things.  Always with the assurance, whatever it is will help, always with the slight retraction when it has not.

“Sleep, wake up make pancakes?”  Emma said this morning.

“Yes, Em, tomorrow we can make pancakes together,” I said.

“It’s Nic’s Mommy,” Emma said pointing to me.

“I am Nic’s mommy.  And I’m your mommy too,” I said.

“It’s Mommy,” Emma said, kissing me on the cheek.

I held her to me and said, “That’s right, Em.  I love you.”

“It’s light out,” Emma said pointing out the window.

“Yes, Em.  It’s light out.”

Unreliable Witness

Yesterday I received a call from Emma’s school saying she was crying and her ears hurt.  She was inconsolable.  By the time I arrived to pick her up, she was cheerful and eager to, “Go see Doctor, you have to say ahhhh.”

“No I don’t think so, Em.  I think she’ll want to check your ears, make sure you don’t have an ear infection,” I told her.

When we were ushered into the doctor’s office, Dr. K. said to Emma, “Emma, can you shut my door?”  To which Emma immediately got up, ran over to the door and shut it.

“Thank you, Emma,” the doctor said.  She then proceeded to check Emma’s ears, which were fine.  After the exam I discussed some of our concerns regarding Emma’s progress.

“But she’s doing really well,” Dr. K. said.  “Her language…  She’s speaking more each time I see her,” she added.

I thought about a conversation I had with my brother, Andy a couple of weeks ago.  Andy is a physicist, whose thoughtful opinion I have come to rely on.  He called one morning, as he often does, while on his way to work.  I began crying as I told him how worried I was about Emma.  “I just don’t know that increased eye contact is enough to warrant another round of stem cell treatments,” I said.

Andy reminded me eye contact was the manifestation of a great deal more than “just eye contact”.  He went on to say that an increase in eye contact was significant as it suggested an increase in relatedness as well as cognitive awareness.  He told me he saw it as extremely positive and advised me to not be quite so easily discouraged.  By the time we ended our conversation, I felt much better.  I felt a tremor of hope.

As I sat listening to Dr. K., I realized – I am an unreliable witness.  Whether it is because I am impatient, have high expectations or am too emotionally caught up in the daily struggle to see the improvements others see, it is clear to me, I cannot entirely trust my perceptions of my daughter.

I have mentioned this before, but whenever we go to Colorado, about four times a year, my mother can be counted on to say, “You know, she’s better.”

To which I predictably respond, “Really!  Do you think so?  In what way?”  I cannot say how many times my mother and I have had the above conversation.  One that is repeated with many of our close Coloradoan friends as well.

I am reminded of my recent post regarding Emma.  How my favorite times spent with her are when I have no agenda, no expectations.

How’s Emma?

Emma is.

The Elusive Pronoun

Autistic children are known to have trouble with pronouns.  It is not simply mixing up “you” and “me”, but all pronouns; he, she, her, his, I, you, me, we, us…  There are theories regarding this confusion.  One such theory from Simon Baron-Cohen who coined the phrase “mindblindness” suggests autistic children have trouble self differentiating and therefore become confused when confronted with pronouns.  He has since amended his theory, suggesting autism is a form of “male brain” or empathizing-systemizing (E-S) theory.  He goes on to explain that autism is a series of deficits and delays in empathy.

As with all things “autistic”, it’s a theory.

Last night Emma came into our room at 2:30AM.

“C’mon Em.  You have to go back to your bed,” I told her.

“Mommy come.  You have to ask Mommy.  Mommy can I get you come into the other room?” Emma said, sadly.

“I’m going to go with you.  Come on.  Let’s go back to your bed,” I said, holding her hand.

I tucked Emma into bed and sat next to her, stroking her head.  “Now Em, you need to try to go to sleep.  You need to go to sleep and stay in your own bed until it’s light out.  Then you can come into my room.”

Emma took her hand and gently pressed it to my cheek, “You,” she said.  Then she took my hand and pressed it to her cheek, “Me,” she said.

“That’s right, Emmy!  You,” I pressed our hands to her mouth, “and me,” I said, holding our hands to my face.  This is going better than I expected, I thought. “I’m going to go back to bed, Em.  You have to stay here and try to go back to sleep, “ I explained.

“Okay,” Emma said.

I stood up.

“No!  You and me!” Emma cried.

And then I understood.  She was telling me she wanted me to stay with her.  I had assumed she was showing me she understood the correct use of the words, “You” and “Me.”  It was an interesting moment, with me taking her words literally, and Emma trying desperately to convey her upset and desire for me to stay with her.

“Okay, Em,” I said.  “But I’m really tired.  I have to get some rest,” I tried to explain.

“It’s okay,” Richard said, appearing at the door.  “You go ahead.  I’ll stay with her.”

“Mommy stay with Emma!” Emma said tearfully.

“Mommy has to go to sleep, Em,” I reminded her.

“Okay,” Emma said.  With that she got up and raced past both Richard and me to our bedroom.

“It’s okay,” Richard said with a resigned tone.  “Go with her, I’ll stay here.”

This morning as we went through the motions of getting breakfast for the children, checking backpacks, I said to Richard, “And how long did it take you to fall back asleep?”

“Oh, about an hour and a half,” he said.

“Yup!  Em and me too,” I answered with feigned cheeriness.

“Looks like a beautiful day,” Richard commented, glancing out the window.

“Another gorgeous day,” I agreed.

“Fake it til you make it,” Diane Von Furstenberg told an audience member at the WIE Symposium a few weeks ago.

It’s all in ones perspective.

A Zen Koan

Living with an autistic child, forces one to “think out of the box.”  Emma’s mind is, to a neuro-typical person, a tangled web of odd phrases, misplaced pronouns, questions posed that may be statements or may be questions, interchangeable tenses, words used literally within non literal contexts.   I often find myself feeling I have been given a Zen koan when I’m with Emma.  For those who may not know what a koan is, it is a non-answerable verbal puzzle.  One of the most famous Zen koans is:  Two hands clap to make a sound.  What sound does one hand make?  The answer is – there is no answer and if you attempt to verbalize one you miss the point.

Emma’s behavior is often perplexing, her speech difficult to decipher, her desires often impossible to understand.  And just as with a Zen koan, if one attempts to apply intellect and reasoning to Emma’s actions, one will have missed the point.  My best, most joyful moments with Emma are when I am simply present.  No agenda, no preconceived plan of action, no desired outcome, just present in her company, enjoying her without judgment.

Here are some of my favorite photos of Emma when she was young before all eye contact went away and one taken over the weekend now that her eye contact has returned.

Emma and Lists

Whenever I am feeling discouraged, I make lists.  I have a number of lists going simultaneously.  I have one for my jewelry business, one for my jewelry e-commerce site (yet to be launched), I have another, which is a general To Do List and then there are the lists for Emma.  Emma – research is one, Emma – goals, is another.

Several days ago, when I posted “What Now?” I was feeling particularly down.  Out came the paper and pen.  A list was created with the simple heading:  Emma.  Below the heading I began to make an action plan.  As I worked on my list Emma appeared caring my Ipad.

“Mommy go to bed?” Emma asked.

“Do you want to sit in my bed with me, Em?” I asked.

“Yes.  You have to ask Mommy.  Mommy come to your bed with you?”  She pulled on the sleeve of my robe.  “Mommy can you come to my bed sit with you?”

“Yes.  But you say – Mommy, can you come with me?” I said standing up.

“Mommy can I come with me,” Emma said, struggling with the ever elusive proper use of pronouns.

“Okay.  Come on!  Let’s go.” I said taking Emma’s hand.

Emma loves the Ipad app – Interactive Alphabet – ABC Flash Cards.  She loves the music, which plays as she taps on different letters, each letter coming to life as she touches it.  This app has become such a favorite, Emma requests it each night before she goes to bed.

EE IS FOR EGG,” the female voice said, when Emma tapped on the egg.  She tapped again and watched it cracked open, a raw egg splatted down next to the first one.

“Hey Em,” I said, “What letter is that?” I asked pointing to the E.  Emma said nothing and tapped on the A.

AA IS FOR APPLE,” the voice said.

Emma tapped on the picture of the apple and watched as the apple was eaten with accompanying crunching noises.

“What about this letter, Em?  What letter is this?” I asked pointing to the B.

Emma ignored me and pressed the B.  We continued in this way for a few more letters, with me watching her as she listened to a letter and then when asked what that letter was, she could not answer.

“Press U Em,” I said.  Much to my surprise, Emma immediately pressed U.

UU IS FOR UMBRELLA,” the voice said.

“Hey Em, press P,” I said, holding my breath.

Without hesitation, Emma pressed the letter P.

“Em what letter is that?” I asked, excitement creeping into my voice.

Emma said nothing and pressed P again.

PP IS FOR PLANT,” the voice intoned, as Emma bopped her head up and down keeping time with the music.

“Okay, how about B?  Press B, Em,” I said.

Sure enough, no hesitation, Emma tapped on the letter B.

BB IS FOR BEACH,” the voice said.

I repeated this with more than a dozen letters, picked at random with never a hesitation on Emma’s part, until I asked her, “What about W.  Press W,” I said.

Emma held her finger over W and then tapped on V, just to the left of it.

“Em!  That’s not W,” I said.

“No.  Not W,” Emma said laughing.

“Come on Em.  Press W,” I said.

Again Emma tapped on V and laughed.

V. V IS FOR VOLCANO,” the voice said.

“Okay, what about R?” I asked.  “Press R.”

Emma looked at me, smiled and tapped on Q, again the letter just to the left of R.  After this had gone on for three or four more times, it was clear Emma was choosing the letter to the left on purpose. Each time she did so, she laughed.  It reminded me of all those therapy sessions when I would be called in to discuss Emma’s progress.  The puzzled therapist would then describe a session with Emma regarding something she thought Emma knew, only to question whether perhaps she didn’t.

“So it’s a processing issue,” Richard said later that night when I described my session with Emma.

“Yes, it’s really interesting,” I said.  “She knows every letter of the alphabet if I ask her to point to it.  I think she even knows almost all the sounds they make, but if I ask her to name a letter, she can’t.”

Of course the implications are exciting.  Up to this point I have wondered whether Emma could learn to read or write. I wondered if the wiring in her brain was too jumbled to be able to, just as many autistic children who can read and write, cannot speak.  The other night convinced me; reading and writing are achievable goals.

I spent several hours researching other apps for the Ipad and will be previewing a number of the free ones recommended by other parents of autistic children.  In addition, I have watched the first video from Soma Mukhopadhyay regarding her Rapid Prompting Method and intend to watch the second tonight.

I looked at my list just now.  Below the heading – EMMA – I had written Help Emma with Reading and below that Help Emma with Writing.

Maybe, just maybe, I will one day be able to cross those off my list, just as I have been able to cross off:  Toileting & Bedwetting.

By the way, have I mentioned Emma slept the last TWO nights in her own bed without waking anyone, coming into our room at 6:30AM and 6:45AM?

Jessie & “Dolls”

Autistic children are known for their inability to engage in imaginary play.  A defining moment for my husband, Richard and me was when it was pointed out Emma did not seem interested in any form of pretend play.  Until then I had reasoned:  she was too much of a tomboy, she didn’t like dolls, she was like my sister, it ran in the family.  But the truth was; not only did Emma lack any interest in dolls, she showed no interest in stuffed animals or toys of any kind including horses, a favorite of my sister’s when she was small.

When Emma began playing with her monster, Muzzy, we were elated.  Despite the comments other children, especially little girls who saw Emma, made.  “Mommy, why does she have a monster in her stroller?” One such child asked in puzzled wonder this summer.

“I don’t know honey,” the mother said, looking from me to Emma with a speculative glance as she grabbed her child’s hand and hurried away.

Comments aside, we were ecstatic.  Muzzy was the first toy Emma had shown any sustained interest in.  Granted she played with Muzzy in an odd way – tossing him in the air while laughing, throwing him on the ground so he would, “hurt his head” – it was play however unusual, which suggested tremendous progress.  See Em & Muzzy, Emma’s Pal Muzzy & The Porkmepine and Panama – Day 3.

Last night when Emma disappeared into her bedroom only to emerge moments later carrying not one, but two of her dolls, I was again ecstatic.

“Richard!” I whispered.  “Look!”

Emma sat on the couch holding Jessie who had on a fabulous green coat over her chaps and another doll I’d forgotten we even had.  Granted the doll’s hair looked like a “bad hair day” poster child, but Emma seemed unaware and proceeded to hold each in one hand making them bop up and down.

“It’s Jessie,” Emma said, surveying her red cowboy hat with a discerning eye.

“And what about her?  What’s her name?” I asked gesturing to the other doll.

“Dolls”, Emma said.

“But what’s her name?” I asked again.

“Her name Dolls,” Emma said, turning her back to me.

Emma with Jessie and “Dolls”

Emma did not engage in much language as she played and rebuffed our attempts to “play act”.   But she said hi to Jessie and observed Jessie was hot and needed to take her hat and coat off.  She repeated this with “Dolls”.

Emma Taking Off Jessie’s Hat

At a certain point she looked over at Richard with an impish grin and said, “Dolls fall down?”

“Is the doll falling down?” I said.

“Uh!  Uh!  Uh! Uh!” Emma laughed before flinging the doll to the floor.  Then she pretended to cry and said, “Doll crying, doll hurt.  Doll hurt her head.”

“Oh no!  Did she fall?  Is she alright?”

“Down, down, down!  Help you up, help you up!” Emma said in a sing songy voice.

“Who’s going to help her up, Em?” I asked.

“Help you up,” Emma said again.

“Are you going to help her?” I asked.

“Doll, Doll, come!” Emma said.   Emma leaned down and made the doll pat her head while saying, “Doll hurt her head.”

Emma became stuck in a verbal loop with the above dialogue, repeating it over and over again.

Richard and I suggested she be the one to help Doll up, which she finally did.

“Thank you!” Emma said as she lifted Doll up and gently placed her on the couch.  “Doll crying, Doll see Mommy, Doll hurt her head,” Emma said.

“Oh, no!  Let me see,” I said.

“Hi Mommy, time to go home,” Emma said without giving me Doll.

“Can I hold her, Em?” I asked.

“Time to go home,” Emma repeated, ignoring me.  Then she put Doll’s coat back on and laid her carefully on the ground.  “Good night,” she said, pretending to be the doll.

“Good night Dolls,” Emma said, in response.

Hey it’s play, no matter how bizarre.  It is imaginary play.  Each tiny step of progress, no matter how small, is progress.

“Let’s Talk to Her”

Making the decision to talk with Emma about something has not been a consideration until recently.   For those of you who are loyal followers of this blog you might be caught off guard by the hopeful tone to this first sentence.  If so, you’re right.  It’s all part of the roller coaster ride we’re on.  Feeling despair, feeling hopeful, feeling despair, feeling hopeful…  Like some sort of Möbius strip, we twist and turn.  Someone said to me once:  feelings aren’t facts.  I try to remember that when I am feeling gloomy and attempt to forget it when I’m optimistic.

Fact:  Emma waking in the middle of the night disrupts the entire family.   Richard and I decided a few weeks ago we would try talking with her about it with varying degrees of success.  See What Now? , Wake Up and Good Bye Diapers! The fact that we had even one night without the sound of her mind-numbing shrieks or her stealthily crawling into our bed at 2:00AM was progress.  So last night I decided to spend some time going over what I hoped she would be able to understand.

“Em, it’s time to get ready for bed,” I began.

“Go to sleep now,” Emma said, nodding her head.

“Yes, and when you go to sleep you stay in your own room,” I waited for a response.

“Okay, Emma?  You have to stay in your bedroom all night.  You cannot wake Mommy and Daddy,” I waited for some indication of understanding.  When there was none, I added, “You have to wait until it’s no longer dark.  If you wake up in the middle of the night you look out your window.  If it’s still dark you stay in your own bed and go back to sleep.”

“Go into Nic’s room,” Emma whispered.

“No, Em.  You stay in your own bed,” I explained.

“You have to wait,” Emma said, nodding her head up and down.

“That’s right, Em,” I smiled at her and kissed her forehead.

“You have to pull on Mommy’s robe.  Mommy can I come get you into the other room?”  Emma said.

“No, Em.  You wait until it’s light out.  Then you can come into Mommy’s room.”

“You have to wait,” Emma said again.

I continued to go over the plan with her, step by step.  I attempted to explain the need for her to try and go back to sleep if she woke up in the middle of the night, the importance of staying in her own bed.  I even went over breathing techniques to help her if she began to get upset and wanted to wake us.  Emma nodded her head throughout all of this and interjected with things like, “Mommy’s so upset” and  “You cannot wake Mommy”.

“You’re beating a dead horse,” Richard would have said had he been there to witness the ‘conversation’.  I stopped talking, unsure if any of what I said had been understood.

When it was 6:30AM and Emma had not appeared, I smiled as I readied myself for the day.  By 6:50AM and still no Emma I congratulated myself on a job well done.   As I made my way out to the kitchen I paused at Emma’s room and peeked in.  Her bed, a crumple of sheets, duvet tossed on the floor, pillows scrunched into the corner, looking as though a brawl had broken out, was empty.  I opened the door to Nic’s room and saw Emma snuggled up to her brother fast asleep.

Nic woke with a start and groaned.

“Hey Nic.  Are you okay?” I asked.

“No,” he moaned.

“What happened?” I asked.

“Emma!  She kept me up all night.  I’m so tired,” he said.

“Oh, Nic, I’m so sorry.  Was she awake a long time?”

“I don’t know, she kept going like this,” he said putting his hand over my mouth.  “And then when I ignored her, she’d do this,” he demonstrated by pushing my forehead with the palm of his hand.

“Nicky, I’m so sorry.  I told her not to wake us, so she woke you instead.”

“It’s okay, Mom,” Nic said looking up at me blearily.

“Ach”, I muttered under my breath.  “Next time come get me, okay?  I’ll get her out of your room,” I said.

“Yeah, okay Mom,” Nic said.

As I rode the subway to my studio I consoled myself with the thought that even though I feel terrible for Nic that Emma woke him, it is an enormous sign of progress she understood at least part of the message I tried to convey to her last night.

I will speak with Emma again tonight.  Maybe she’ll understand the entire message.

Who knows?  .

As my brother Andy says, “Who knows anything?”

What Now?

Richard and I have both been worrying since we returned to New York City.  We worry Emma has flat lined or worse begun to regress.  She seems more irritable, for the past three nights she has gotten up at 3:45AM, 4:00AM and last night at 2:30AM.  She seems more easily frustrated, quicker to tantrum, less able to tolerate anything she is not able to directly control.

I must add; I am tired, which always affects my outlook, casting everything in a grey laden tone.  I do not know whether I can trust my perceptions.  Is Emma really regressing or am I just tired?  She woke us at 2:30AM last night and though I was not the one returning her to her own bed until she fell back asleep, I felt guilty.  Richard was with her and would be facing a full workday as well.  He had also covered for me, “flying solo” as he put it on both Sunday and Monday morning, as I was an attendee and exhibitor at the WIE Symposium with my jewelry.

I stayed up for over an hour tormenting myself.  Is she regressing?  Have the stem cells had any impact?  What will we do now?  What if none of this works?  What will happen to her?  How will we continue?  My thoughts devolved as the minutes ticked by.

The stem cell treatments have, until recently, provided me with such hope.  I hoped they would make a significant improvement cognitively, in her speech, in her ability to tolerate frustration.  I hoped they would allow us to have a conversation with her.  I hoped they might even help her attend at school, learn eventually to read and write.  Now I am not so sure.  I am feeling beaten down.  What will become of Emma?

I do not know.

We are in uncharted waters.  No one can predict what our autistic children will be like in five years, ten years.  No one can show us autistic children, now adults and say to us – if you do this, this and this, your child will be like this adult.  Functioning, living independently, able to hold a job, have relationships with people who genuinely love them for who they are and not because they are being paid to care for them.

I spent yesterday at the first annual WIE Symposium  (Women, Inspiration, Enterprise).  The day was sponsored by the White Ribbon Alliance, a non-profit, attempting to help pregnant women all over the world have a safe pregnancy and childbirth.  I listened to women who have traveled the world tell horrifying stories of the women and children they have met and are trying to help.

One of the speakers spoke of how all children are our children.  She said it is up to all of us to ensure all children are given opportunities, food, medicine etc.  And I thought about Emma.  Richard and I both hold jobs.   We were both born and raised in the United States.  I have a family who is involved.  We have been given opportunities which vast portions of the world’s population do not have available to them.  And yet, we both have felt the profound isolation which comes with having a child with special needs.  And it is profound.

Mellody Hobson, President of Ariel Investments on a panel – “Business as Usual” told a story of a moment when the market crashed, she called her boyfriend in despair.  He reminded her she was from Chicago.  Not sure where this was going, she said something like, “And?”

“What do you do when there’s a blizzard?” He asked.

She was exasperated, couldn’t figure out the point to his line of questioning and began getting impatient.

“You look at your feet, you don’t look up, because you’ll fall.  So you look at your feet and you keep walking,” he said.

Later, each panelist was asked what advice had proven most helpful to them over the years, Mellody said she’d been told to smile.  Mellody is an African-American woman who said she made the decision she did not want to be “an angry black woman.”  She spoke of how it was important to her to carry on her life with elegance.  She told another story about conducting a meeting at her office only to have the first gentleman who arrived hand her his coat.  She said nothing, hung it in the closet and proceeded to sit at the head of the conference table where she began the meeting.

The last panel was on Philanthropy and Advocacy.  A young African girl, Nthabiseng Tshabalala was on the panel and spoke last.  She looked to be about Emma’s age, perhaps a few years older.  She spoke beautifully about her experiences and ended with, “I am here because I am educated, you (gesturing to the moderator Sarah Brown) are here because you are educated, all of you are here because you are educated”, and again I thought of Emma and all the children in this country who are not “educated”.  Where does that leave us?  Where do we go from here?

For today I am going to look at my feet and keep walking.

“Do something for someone else,” Diane Von Furstenberg told a young audience member, seeking advice.  “And fake it ‘til you make it.”

I’ll try that as well.

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

Desperation & Coping (Part One)

Desperation is the shared feeling almost all parents of autistic children feel at some point.  It may be fleeting, but I have yet to meet a parent who did not feel some degree of desperation as they tried to make sense of what it means to their child and entire family when autism is diagnosed.

Since Emma’s diagnosis, many people have recommended all kinds of things.  Books to read, vitamin supplements, therapy programs, diets, doctors, specialists, DAN (Defeat Autism Now) doctors, Gastro-Intestinal Pediatricians, Neurologists, Developmental Pediatricians, Psychics, Nutritionists, healers, Shamans, Homeopaths, massage therapists, Qi Gong Masters, I could go on, but I won’t.  When I look back on those first few months after Emma was diagnosed, everyone I ran into seemed to know someone with an autistic child whom they wanted me to speak to or who was doing something they felt might be useful.  See Our Emma, The Beginning and The Beginning (Cont’d) for more.

Many of these suggestions turned out to be extremely helpful.  But in the beginning it was overwhelming.  I simply could not process my emotions as well as organize her therapies quickly enough to make good use of the plethora of information I was being given.   I made a file, which I labeled “Emma” and threw everything into it.  For months I was unable to look in the file.  During that initial period, when I wasn’t taking Emma to various doctors and overseeing her therapists, often seven in a single day, I was reading books and on the Internet trying to learn all I could.  Only then was I able to start going through the file filled with suggestions.  It was a difficult period for all of us.

Emma – Summer, 2006 – Two Years After the Diagnosis

As time went on and we adjusted to our life with autism, I found it easier to take the time to investigate a suggestion made.  Now when I receive a suggestion and if it seems even vaguely helpful I will pursue the suggestion with more vigor.  There have been times when people suggest things, which I have already tried or seem very close to something we’ve already tried and so I dismiss it.  And then there are the times I have dismissed something, only to revisit it later.  I try to maintain an open mind while being aware that unfortunately there are many people who see autism as an opportunity to make a great deal of money from desperate parents like myself.  Anyone can claim anything with little or no proof of its efficacy.

Like the many doctors we have spoken to, parents of autistic children have very strong feelings regarding autism and what will or will not help.  With few guidelines and only anecdotal evidence to go by, it is easy to become mired in a stew of conflicting information or as in most cases, not enough information, studies or clinical trials to make a decision, which doesn’t carry some doubt.

I remember speaking to one mother of an autistic boy who was becoming increasingly violent.  She had bite marks on her chest and arms from his latest tantrum.  She was frightened of her child and said to me, “I don’t want to put him on meds, but there are days when I dread going home.  As he gets bigger and stronger I become more afraid. I don’t know what to do, anymore.  And how do I know the meds won’t harm him in the long run?  Our kids are guinea pigs.”

She was but one of many parents faced with the realities of caring for an autistic child.