Tag Archives: Parenting

“It’s Light Out”

Posted on October 1, 2010 by | 4 comments

“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.”

4 Comments

Posted in Autism, Parenting, Sleep Issues

Tagged , , , , , , ,

Jessie & “Dolls”

Posted on September 23, 2010 by | Leave a comment

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.

Leave a comment

Posted in Autism, Pretend Play, Speech

Tagged , , , , , , , ,

“Let’s Talk to Her”

Posted on September 22, 2010 by | 1 comment

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?”

1 Comment

Posted in Autism, language, Parenting, Sleep Issues

Tagged , , , , , ,

What Now?

Posted on September 21, 2010 by | 4 comments

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.

4 Comments

Posted in Autism, Parenting

Tagged , , , , ,

Emma & Music

Posted on September 17, 2010 by | Leave a comment

My studio, where I design my jewelry has windows facing west into Manhattan and north looking out onto the 59th Street Bridge.  The flow of traffic making its way to and from Manhattan is oddly soothing to me, though I never take anything other than the subway to and from work.

Many autistic children are fascinated by some mode of transportation.  I remember at Emma’s preschool there was a little boy who was high functioning. He would recite all the stops on every subway line in New York City.  When he was on the carousel in the park he would shout out the stops.  “Next stop, 59th Street, Columbus Circle,” he’d yell.  “Connections to the A, B, C, D and 1 trains!”

Richard was standing next to the child’s father as this went on.  “He forgot 50th Street,” Richard said at one point.

“No, 50th Street is under construction this week,” the boy’s father replied without taking his eyes off his son.

Emma doesn’t keep tabs on the subway system, if she did, I wouldn’t need my iTransNYC app on my iphone.  However she does prefer taking the subway and can lead anyone through its maze of exits and entrances like the seasoned subway rider she has become.  She knows which train to take and will say things like, “No take the red train.”  Meaning she wants to take the train running under 7th Avenue leading from our house to Central Park or she’ll say, “Take the yellow train?”  Which typically indicates she wants to go to the zoo in Central Park or FAO Schwartz and the Apple store.

Emma is an adept traveler on airplanes, trains of any kind and even in cars, she will sit quietly gazing out the window, humming.   Emma’s memory comes into play with events which happened often years ago – as demonstrated when she says things like, “Amy all gone.  Amy move away.”

This is in reference to her preschool teacher now almost five years since she last saw her.  In addition, Emma has an uncanny ability of remembering the tunes to songs.  She is able to hear a song once and then we will hear her sing it note for note sometimes a week or two later.  The lyrics are often garbled and when she doesn’t remember the exact words or cannot pronounce them she’ll sing an incomprehensible version or will fill in by humming, keeping the tune intact.  I am in awe of Emma’s ability to hold a tune and her memory of lyrics, particularly when she usually does not understand the words.  This is an audio recording of Emma singing “The Mambo” one of her favorite songs from an Elmo Video in which Linda Ronstadt, dressed up as a mariachi band member sings.

Emma Singing The Mambo

Leave a comment

Posted in Autism, Parenting

Tagged , , ,

“But She Looks So Normal!”

Posted on September 16, 2010 by | 2 comments

Is what someone said to me the other day when I mentioned the reason Emma wasn’t responding immediately was because she’s autistic.  And when Emma finally did respond, it was with a reply which had no application to the question asked.

If we went on looks alone, we would all be in trouble.  However in Emma’s case it both serves her as well as complicates things.  People look at Emma and assume she’s “normal”.  They see an athletic, cheerful child.  It is difficult for people to believe she cannot communicate as other children her age do.

I have had the experience of being told on more occasions than I can count, “Oh my toddler does that too!”  or “She sounds just like my son!” and then they go on to tell me stories about their impish child’s antics which remind them of Emma.  Except that Emma is not an extremely tall two-year old who is acting out.  She is an autistic eight-year old who’s verbal skills continue to progress at a snail’s pace.  When people comment she is like a two-year old, they are right in some ways, but in most ways it is an incorrect assumption.  Emma is not “delayed”, she’s autistic and there is a vast difference between the two.

Explaining Emma to our son Nic, has forced me to become aware of just how complicated it is to describe her.  To say that she is doing something – biting herself, for example – as a way to get attention, would be incorrect.  Emma is not seeking attention.  I believe she is trying to gain control around a situation, which is uncontrollable.  The pain she causes herself is more tolerable than the pain she feels from a situation she has no power over.

When I look at her brain scans and see the lack of symmetry, the bright colors, which should be dark, like a strange Rorschach test gone wildly awry, I try to detect patterns.  I try to make sense of what I’m seeing, but cannot.

“Emma’s brain is not like ours,” I tell my son and myself in times of upset.  She does not think, feel, see or hear as we do.  She is decidedly “other”.

But how to explain this to the family on the airplane we recently took when asked if they wouldn’t mind sitting across the aisle from their grown children so that we might sit next to Emma?

When they refused, the father added, “I don’t see what the big deal is, you’re sitting near her, just the aisle’s between you.”

How does one then explain how agitated Emma will become?  How can one really make people understand, who have little or no contact with autistic children or if they have, one unlike Emma?  Of course Emma did become agitated and eventually we found two kind souls many rows back who were happy to take our seats so we could sit next to Emma, disaster narrowly averted.

“I can’t imagine what it must be like to parent an autistic child,” a friend of mine said a few weeks ago.

“I can’t imagine what it’s like to have two neuro-typical children,” I responded.  Afterwards, I thought about our conversation.  I really cannot imagine.  Emma informs every aspect of our lives.  When Emma says or does something new we record it.   Every milestone, each new word uttered is met with astonished elation.

I remember when Richard and I were planning our wedding.  A friend of Richard’s told us to take a few moments to absorb everything that was happening because it would go by so quickly.  We took his advice and to this day I can remember the beautiful floral wreath arrangements hanging from each lighting fixture, the candles casting their golden shadows across the room, Richard’s handsome face as I walked down the aisle toward him.  I remember because I stopped for a moment and took the time to take it all in.

Emma has provided us with something similar.  Her progress is so slow.  We celebrate each and every tiny step forward.  Of course we are also forced to spend much more time than we’d like, being present for the steps not taken, the fumbles, the excruciating process of growing up in a world where people do not understand, who judge Emma and us, assume she’s a “normal” child who is just being obstinate, difficult or “spoiled”.

The trick is to savor it all, I suppose.  A trick I continue to work on.

2 Comments

Posted in Autism, Parenting, Speech

Tagged , , ,

Transitions

Posted on September 13, 2010 by | 1 comment

Transitions can be difficult for all of us, but particularly troubling for autistic children.  One of the defining characteristics of autism is an insistence on sameness and routine.  When a routine is disrupted the autistic child suffers.  Anything I write regarding this will be an understatement.  How can I describe the abject terror in Emma’s eyes when she cannot adequately communicate her fears and anxiety?  I cannot.

Emma has had meltdowns, several in a day since we returned home.   They tend to increase in intensity in the late afternoon, early evening when she is tired.  When I examine the behavior it continues to baffle.  Last night was a perfect example.  I was preparing to go out when Emma who was listening to a music video suddenly screamed,  “I need help!”  And then bit herself on her forearm.  The bite didn’t draw blood, but it was hard enough that we could see the teeth marks and it immediately began to swell.  She tends to switch arms and so both of her forearms have bruises on them from previous biting.

“It’s not okay to bite, Emma, I said, kneeling down.  “What’s going on?” I asked,

“No biting!” Emma yelled and then said, “I need help!”

“What do you need help with?” Richard asked joining us.

“You have to ask Mommy.  You have to pull on Mommy’s shirt,” Emma said, mimicking Joe.

“Do you want to listen to a different video?” I asked, confused.

“NO!”  Emma wailed.

“Okay. Emma, you have to take your thumb out of your mouth, so that I can understand you,” I said.

“Mommy, I need help to look for it,” Emma said.

“What are we looking for?” I asked.

Emma got down on her hands and knees and began crawling around on the floor.

“Em, tell me what we’re looking for?” I asked, joining her.

“I think she lost the foam to her earbuds,” Richard said.

“Em, are we looking for the foam?” I asked.

“Yes!” Emma wailed.

It turned out Emma had thrown the foam covering one of the ear buds onto the ground, for some unknown reason.  Once the foam was found, I joked to Richard as I left, “I’m leaving, I may not come back.”

“I don’t blame you,” he said.

“My phone will be turned off, text me if you need me,” I said. When I returned home Richard looked exhausted.

“How bad was it?” I asked.

“Bad.” Richard answered.

After I left Emma went from one upset to the next, she cried about the video not downloading quickly enough, once that was fixed there was a missing photograph.  See “Photographs” for more on this.  And on it went through out the night until she finally fell asleep around 8:00PM.

Looking at my husband, I knew how he was feeling.  There’s the thought of – I just need to get through this next hour.  And once Emma’s fallen asleep the sense that the tenuous shred of hope we both desperately cling to is fraying.

“Do you want to talk about it?” I asked.

“I really don’t,” Richard said.

I nodded.

For more on Marriage go to:  “Marriage (Part 1)” & “Marriage (Part 2)”.

1 Comment

Posted in Autism, Marriage, Parenting

Tagged , , , , ,

Desperation & Coping (Part Two)

Posted on September 10, 2010 by | Leave a comment

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

Leave a comment

Posted in ABA, Autism, DIR - Floortime

Tagged , , , , , , ,

Desperation & Coping (Part One)

Posted on September 9, 2010 by | Leave a comment

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.

Leave a comment

Posted in Alternative Therapies, Autism, Parenting

Tagged , , ,

Emma’s Art

Posted on September 8, 2010 by | Leave a comment

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.

Leave a comment

Posted in art, Autism, Parenting

Tagged , , ,

A Conundrum

Posted on September 7, 2010 by | Leave a comment

We are often baffled by words Emma says which we do not understand the context or meaning of.  See Emma’s Language and Sunday Morning’s Conversation for more.   A few weeks ago we were dumbfounded by the utterance, “cheese-solos” which Emma requested over and over again.  Prior to that it was something that sounded like, “atta-tah”.  It turned out the first was cheese doodles, evidently given to her as a snack at her school, but since we never bought them, it took a moment of sheer genius on Joe’s part to make the connection.  The latter turned out to be, “go to town” as in “No we’re not going to go to town.”  Except Emma would say, “No, we’re not going atta-tah.”  Even as a baby, Emma’s first words were, “All done!” though it sounded more like “ah-dah”.  As she has grown older the words continue to confound us, but even when they are intelligible they often do not make sense to any of us.  For the past few weeks in answer to the question – what would you like to do today? – Emma has responded with, “Go to downtown Aspen, push the button game?”

One day last week Joe, determined to get to the bottom of this, spent some two hours in town with Emma trying to figure out what she meant.  He came home as perplexed as when he’d left.

So when Emma said to me, “Downtown Aspen?  Push the button game?”

I inwardly groaned as I knew we would be spending a great deal of time wandering around town trying to find a game which I no longer was convinced she even knew what or where it was played.  But Nic was at the skateboard park with my friend Claudia, so I figured I would go wherever Emma pointed me and see where our adventure took us.

“Go this way,” Emma said from the back seat of the car, pointing in the direction leading toward Independence Pass.

“But Em, that will take us out of town,” I said.

Emma nodded her head.  “Go downtown?” she said with the inflection making it sound like she was posing a question.

“If I turn left Em, we will be heading out of town,” I said, hoping this would clarify things.

“Yes,” Emma said.

“Okay,” I said, taking the next left leading us out of town.  “Is this the right way?” I asked after a few minutes.

“Yes?” Emma said.

“Okay, Em.  You want to go out of town.  This is not downtown, this is leaving town,” I said.

“Leave town?” Emma repeated.

“Where should I go now?” I asked as we passed the turn off to the Aspen Club.

“Go this way?” Emma said.

“Which way, Em.  You have to point,” I said looking at her in the rear view mirror.

“Go this way?” Emma said pointing to the turn off for the cemetery where both my grandparents are buried as well as my father and a number of family pets.

“Oh, do you want to go to the cemetery?” I asked.

“Cemetery?” Emma repeated.  “Push the button game?”

“Okay, Em,” I said as we neared the padlocked gates.  I stopped the car.  “Is this where you play push the button game?”

“No!  Downtown Aspen!” Emma cried.

“But Em, I’ve been asking you where you want to go and you told me to come here. I’ve gone exactly where you wanted, I just can’t understand where it is you want to go,” I said, exasperation and exhaustion crept into my voice.

“Go downtown Aspen?”  Emma managed to say in between tears.

“But Em we just were downtown, remember?  We spent at least 45 minutes downtown with Muzzy in the stroller,” I said.

“Go downtown, push the button?”  Emma repeated sobbing.

“Em.  I give up.  I don’t know where you want to go.  Should we go back to Granma’s?”

“Push the button,” Emma, now inconsolable, cried.

As I turned the ignition on, Richard called asking how things were going and where we were.  He agreed to come meet us at the skateboard park and said he’d take Emma.

The entire way back into town, Emma cried in the back seat, “Push the button!”  Then she paused and said, “Shhhh!  You have to be quiet.  Stop screaming.”  Listening to her I could hear the echo of other people in her life, speaking to her.  Not only was she repeating what had been said to her, she was also adopting the tone and inflection of the many people in her life who have cared for her over the years.

Hours later, while Nic, Claudia and I sat outside the fountain in the middle of town, Richard and Emma appeared.

“Hey!  How did it go?” I asked.

“Well, my theory regarding the push the button game was correct,” Richard said triumphant.

“What theory?” I asked.

“I told you the other day,” Richard said.

“You did not!” I said.

“I did.”

“Tell me.”

“It’s a water sculpture and fountain on the other side of the mall.  If you look at it from a certain angle it kind of looks like a hot tub and she pretends to push a button to make the water jets come on.”  Richard looked at us.

“I cannot believe it,” I said, looking at Emma who was happily sitting on the chair across from me.  “You’re a genius,” I said to Richard.

“The only problem with being a genius is no one recognizes it,” Richard said.

Leave a comment

Posted in Autism, Parenting, Speech

Tagged , , , , , , ,

Emma’s Pal Muzzy and the Porkmepine

Posted on August 22, 2010 by | Leave a comment

While Ariane was taking a break, I took Emma for a ride on the ‘four-wheeler’, a small ATV that’s good on the unpaved roads here and the big fields beyond. We like to go early in the morning and late in the afternoon after a long day of swimming, walking, bowling, bungee cord jumping — in other words, all things physical and fun.

On our 4-wheeling adventures, it’s not uncommon to spot a variety of wildlife; deer, foxes, a family of coyotes (with four baby cubs!) and unexpected surprises, like today’s sighting of a large, chubby porcupine who was wobbling around behind the barn. Like most of the animals here, he/she? was fairly inured to human contact, but when we approached within fifteen feet I cut the engine, to see if he might stick around long enough for a good visit.

“Look Emma, see that? That’s a porcupine!”

No response.

He started wobbling in the opposite direction, crawling beneath the barn, which I assumed was his new living quarters from the practiced ease with which he hid away. Before he vanished I pointed to him again and said, “Emma, can you say porcupine?”

“Morepickpine,” she said, or something to that effect.

“No Emma, PORC-U-PINE,” I slowly enunciated.

“Porkmepine,” she replied.

“No Emma, not porkmepine, porc-ya-pine!” I smiled, shaking my head, changing my pronunciation of the second syllable so she didn’t think I was somehow talking about her (“you”) when identifying the animal.

“Porkapine,” she said.

“That’s right Emma,” I said, starting up the engine.

It was pretty funny, a little frustrating and a little encouraging. Frustrating because she still has such a hard time making distinctions in simple labeling. Encouraging because she was at least grasping the distinction between the words “you” and “me” when it came to identifying herself. Most of the time, she still talks like Elmo when she speaks of herself.

“Emma go on four wheeler?”

Sometimes I’ll just nod and answer, “sure Emma, let’s go for a ride.” But it’s better if I remember to correct her and suggest a more appropriate response:

“Emma, you can say, ‘Daddy, I want to go on the four-wheeler.'”

She will usually echo that response and occasionally (very occasionally) remember to phrase a question correctly. She has the same trouble with “you, I, me, she, he.” So we will often correct her when she says “you” when she means “me”, or “he” when she’s talking about a girl, etc.

Later in the afternoon, Joe took her out to play. She insisted on bringing her stuffed animal Muzzy along. See the attached photos Joe took after Emma buckled Muzzy’s seat belt in the car and then strapped him into a jogger, pushing him down one of the local bike paths. This new affectionate attachment to her stuffed monster-animal pal is another very encouraging sign. Muzzy recently accompanied her in a hospital bed, and now that he seems to have fully recuperated, she’s taken him for an outing in the countryside.

Emma may not care much about prickly porkmepines, but she sure does love her fuzzy Muzzy. And that’s just fine with you.

Leave a comment

Posted in Aspen, Autism, Speech

Tagged , , , ,

The Washing Machine

Posted on July 20, 2010 by | Leave a comment

“Should we put Emma in the washing machine?!” Emma asked, while pointing to the washing machine filled with clothing.  Then before I could answer, she shouted gleefully, “NO!!   We cannot put Emma in the washing machine!”  At which point Emma began to laugh hysterically.  “Should we put Mommy in the washing machine?” Emma asked, still laughing and pointing at me.

“Good idea, Em.  But will I fit?” I asked.

“NO!”  Emma shrieked with laughter.  “You cannot fit in the washing machine.  Mommy’s too big!”

“But maybe I could squeeze inside if I scrunched down into a teeny little ball,” I said, sucking my cheeks in and curling my arms up next to my sides.

“NO!”  Emma shouted.  “You cannot fit inside the washing machine.  Emma’s too big!”

“Emma’s too big?  Or Mommy’s too big?”  I asked, laughing along with her.

“Emma AND Mommy too big!  We cannot put Emma in the washing machine,” Emma said.

This went on for quite some time, with me asking if we should put a whole variety of people in the washing machine:  Daddy, Nic, Granma, Uncle Andy, Uncle Victor, Aunt Toni, Uncle Chris…  the list went on.

Each time Emma would answer, “NO!  We cannot put  Nic in the washing machine. Nic is too big!” or “NO!  We cannot put Daddy in the washing machine.  Daddy’s too big!”

“What about Merlin?  Should we put Merlin in the washing machine?” I asked, expecting the same answer from her.

But Emma surprised me by saying, “Yes.”

Taken aback I didn’t say anything for a second.  Then I repeated, “We should put Merlin in the washing machine?”

“Yes!”  Emma said.

“Are you sure?” I asked buying for time and trying to figure out how to save poor Merlin from such a murky fate.

“YES!”  Emma shouted.  “We can put Merlin in the washing machine!”

“Nooooooo!  We cannot put Merlin in the washing machine,” I said.

Emma threw her head back and laughed and laughed.  I don’t know that I have seen her derive so much joy from anything in days.

Poor Merlin.

Leave a comment

Posted in Autism, Speech

Tagged , , , , , , , , , , , , , , ,

Theories

Posted on July 16, 2010 by | Leave a comment

Autism is nothing without theories.  Specialists, doctors, scientists, geneticists, parents, everyone has a theory when it comes to autism.

Richard claims I have more theories regarding autism than the most versed specialist.  And he’s right, I do.  The only difference is, I freely admit 95% of them turn out to be wrong and the remaining 5% have no validity because while they may prove right for Emma on any given day, they do not hold up long term or within the larger autism population.

Richard and I have a running joke about my desire, my need for theories.  When we are confronted with any new behavior from Emma, Richard will look at me and say, ”And your theory is?”

The beauty of having theories is, autism remains an enormous question mark and so the most impractical of theories hold weight if for no other reason than because they are difficult to prove wrong.  There is so much more we do not know than we do.  The other thing about theories is they give us  (me anyway) hope.  Hope that we’re moving forward.  Hope that maybe this line of thinking is going in the right direction.  Hope that the theory will lead to another theory, which in turn will prove to be true, leading us to a cure, a cause, something, anything…  No matter how crazy, the theory stands until proven otherwise and with autism that may be for a long time.  It’s something, anything, to go on amidst the great expanse of unknown.

Richard usually leaves the theorizing to me, so I was surprised when he said to me last night, “I have a theory.’

“Really?” I said looking at him to be sure he wasn’t making fun of me.

“Yes,” he said.

“Great!  Tell me more.” I said.

“Emma is doing great. “

“And your theory is?” I prodded.

“That is my theory.  She’s doing great.  The other day she and I were walking down the street.  I passed her and stepped off the curb to hail a taxi, but she didn’t see me.  She looked around, her eyes got really big and then she said something, I can’t remember what.  But she was scared and didn’t know where I was.  I called out to her – Emma!  I’m right here!  When she saw me, she cried out – There’s Daddy!  There’s Daddy!  I found you!  That’s never happened before,” Richard paused.  “She was really frightened when she thought I wasn’t there,” he said.

Suddenly I remembered when Emma was three and we went to New Paltz for the weekend.  We stayed at a huge rambling hotel right out of The Shining.  Richard and I in one room, the children with Joe in an adjoining room.  At around 2:00AM I heard a door slam, thinking nothing of it I started to go back to sleep.  Five minutes later our door opened and Joe said, “Is Emma with you guys?”  In a panic all of us threw on clothes and began searching the labryinthian hallways calling for Emma.  We split up hoping we might cover more ground that way, I ran to the front desk and reported her missing to the hotel staff.  It was the dead of winter, snow drifts piled up around the hotel, I was terrified Emma might open one of the self locking doors to the outside and not be able to get back in.  She was bare foot with just her nightgown on.  After about 20 minutes when panic had turned to ice – when your body no longer feels it is your own – one of us found her.  It was either Joe or Richard, I can no longer remember, but I know I began to cry in relief.  She was holding hands with some man who worked for the hotel.  He was quietly talking to her – at that time she had almost no language – and leading her back to the front desk.   I was in tears, thinking of all the horrible things that might have happened to her.  But Emma acted as though nothing unusual had occurred.

Richard continued, “Her sentences are becoming more complex, she’s become much more engaged, she talks all the time now and it’s not just because she wants something.  She’s talking to connect with us.  She wants to connect with us.  And except for the other night, she hasn’t wet the bed in almost a month now.”  He looked at me and then added, “She’s doing great.”

I remember when Emma turned four we had a big birthday party for her, hired a musician to come and play the guitar and sing kid friendly songs.  Emma was dressed up in one of her “party” dresses with a tiara on.  She spent most of the party trying to lie down inside of the musician’s guitar case, ignoring all the other children and the music.  I remember plastering on a smile for our guests, at one point I excused myself and wept in the back, giving myself two minutes to cry before returning to the party and pretending everything was fine.  I didn’t fully understand her sensory issues; I hadn’t developed any theories at that point.  I was still in the process of reading everyone else’s theories regarding autism.

“It’s a good theory,” I said to Richard.

“Yup.  I like it,” he said.

Leave a comment

Posted in Autism, Bedwetting, Marriage, Parenting, Speech, Stem Cells

Tagged , , , , , , , , , , , , , , , ,

Pancakes

Posted on July 14, 2010 by | Leave a comment

Emma loves pancakes.  Until recently she was a purist, adamant that the pancakes not contain any other items.  Ours were not the pecan-raisin pancakes or the macadamia-banana pancakes, just pancakes, plain, drenched in pure maple syrup.  One weekend in a moment of elated inspiration I dumped a container of blueberries into the batter only to watch Emma’s face crumple into sobbing tears of despair by my act of betrayal.  I tried, on a few more occasions, to add something to the batter, hoping to expand her limited repertoire of foods.  Each time Emma refused to touch the pancakes and I learned my lesson.  Don’t mess with Emma’s pancakes.

And then we had my cousin and her two girls over for a slumber party one weekend.  We had discussed the “weekend pancakes in the morning routine” prior to their arrival.  When Liesl and Lily arrived they produced a plastic bag filled with chocolate chips.

“We brought chocolate chips for our pancakes,” Lily solemnly informed me.

“Great!” I said.  I looked over at Emma.  “Look Em, Liesl and Lily brought chocolate chips for our pancakes tomorrow morning!”

Emma peered suspiciously at the bag.

“We can make some with chocolate chips and some plain,” I said cheerfully.

Emma said nothing, but there was no mistaking the look of despair on her face.

The next morning we heated up the griddle and the girls and I got out the pancake mix, milk, a whisk, bowl and the chocolate chips.  The girls crowded around, taking turns pouring the milk into the pancake batter and stirring everything together.  I poured some of the batter onto the grill, making sure Emma would have two pancakes before Liesl and Lily dumped most of the contents of the baggie into the remaining batter.  Emma watched in resigned silence.

“It’s okay Em.  I’ve made you some without the chocolate chips,” I said.  “Look, they’re right here.”  I prodded the plain pancakes with the spatula.

When the pancakes were all cooked I said, “Hey Em, how about trying just one pancake with chocolate chips?”

“No!” Emma said loudly in her sing songy voice, edged with panic.

“Okay.  How about one bite?” I offered her the corner of one pancake sullied with a chocolate chip.

“One bite, Emma?”  Emma said, looking as though I’d just offered her someone’s intestine.

“Yes.  Just one bite,” I said.

Emma reached out and took the offered piece, very reluctantly she smelled it, then placed a tiny piece in her mouth.

“Is it good?  Do you like it?”

“Yeah!”  Emma said.  “Okay, okay, one more bite?”  She looked at me expectantly.

“Okay.  Sure,” I said offering her another piece.

Again she ate it.

“Hey Em, how about you take the rest of this pancake and eat it with the Liesl and Lily?”  I said, going over to the dining room table and placing her plate down next to her two cousins.

Emma then proceeded to eat the entire pancake along with the other two plain pancakes.

The next weekend Emma said, “Pancakes with Mommy?”

Yes!  Come on.  Let’s make pancakes,” I said.

“Pancakes with chips?” Emma asked, rooting around the cupboard for a bag of chocolate chips.

“Let’s see if we have any,” I said.  “Otherwise we will go to the store and buy some.”

“Have to get some chocolate chips,” Emma muttered, still searching.  “Here they are!” She exclaimed holding up a bag.

Emma looks forward to Saturday and Sunday mornings with unadulterated excitement and anticipates our pancake mornings by saying on a Wednesday morning, “Sleep wake up, sleep wake up, sleep wake up, pancakes with Mommy!”

“Yes!  We will have pancakes Saturday morning,” I answered.

“Sleep wake up, pancakes with Mommy!” Emma said the other day, hoping to trick me into making pancakes with her on a non-weekend morning.

I was tired and not paying attention,  “That’s right,” I said.

Emma jumped up and down.  “Pancakes!”

Then the realization I’d made a terrible blunder hit me.  I explained why we couldn’t make pancakes; it was a school day, we wouldn’t have time, the bus was coming, etc.

Now it is a given the pancakes we make will include chocolate chips.  Last Saturday morning I asked, “Hey Em!  What about adding sliced bananas with the chocolate chips?”

“No bananas,” Emma said.

On another Saturday I asked, “Should we add some blueberries?”

“No blueberries,” Emma said.  Then offering an alternative she added, “Do you want pancakes with chocolate chips?”

“Sure, Em,” I said.

“Yes, pancakes with chocolate chips!” Emma said.

Leave a comment

Posted in Autism, Parenting

Tagged , , , , , , , , , , , ,