Category Archives: Sleep Issues

That Pesky Issue of Death and The Desire For a Sleepover

Posted on May 24, 2012 by | 4 comments

“Have a sleepover with Susan and Peter?”  Emma mumbles.  It’s early.  I’m tired.  I  didn’t sleep well, blinding headache, and it’s 6:07AM.

“What time is it?” Richard asks in that groggy-first-words-spoken-in-the-morning kind of voice.

“Six ten,” I reply, optimistically rounding up, hoping those added three minutes will serve to soften the blow.  In case any of you are wondering, Richard is NOT a morning person.  Anything earlier than 7:00AM causes him tremendous pain.  I can hear Richard’s slow intake of breath.  I imagine I can feel his exhaustion.  No wait, that’s mine, never mind.

“I want a sleepover,” Emma says, more loudly this time in case we hadn’t heard her the first time.

I know why Emma is saying this.  Nic has been invited to spend the long Memorial Day weekend with his friend.  He’s leaving Saturday morning and won’t be home until Monday.  Emma overheard Richard and I discussing this.  Emma overhears a great deal.  Emma pretty much knows more about what goes on in our house than I do.  She’s got her finger on the pulse of what’s happening.  And she wants in.

My heart feels as though it’s in a vice grip and simultaneously I feel euphoric.  It’s that bizarre feeling of holding two opposing feelings at once.  This is a rough version of my panicked inner dialogue:   What am I going to say?  This is so great!  How do I tell her my cousins will not be inviting her for a sleepover at their house?  We’ve been through this before.  How do I explain why it is that her brother, Nic, gets invited to sleepovers all the time, but she has never been invited to one?  But she’s asking to have a sleepover, which is fantastic and heartbreaking at the same time.   What can I say that’s honest, but not so honest it will hurt her feelings?  How do I explain what a sleepover entails?  How do I explain the intricacies of sleepovers, that it’s not just sleeping in a strange bed and then coming back home, that there’s so much more to it?  Maybe I don’t need to.  Maybe I need to figure out a version of a sleepover.  Does she understand that I don’t accompany Nic on his sleepovers?  I think she does, but I’m not sure she cares.  

“How about this?” I finally say, measuring my words.  “How about we have a sleepover at Granma’s in June?”  I wait as she stares at me.  She doesn’t say anything.  It’s as though she’s thinking – are you kidding me?  That’s not a sleepover.  That’s a visit.  We do that all the time.  What, you think I don’t get that?  I smile at her, encouragingly.

“Sleepover at Peter and Susan’s.”

Oh boy.  “Um.  Well.  No.  We can’t do that, babe.”

“In August,” Emma says with the tone of one who has tired of the conversation.  There’s a finality to her voice.  Case closed.  There will be no more argument.  She turns her back to me.

Should I let this drop?  Just leave it alone?  But I know there won’t be any sleepover at my cousin’s house in August.  Shouldn’t I tell her that?  I’m reminded of friends of ours who have two, now grown, adult children.   This was when Nic, then four years old, wanted to know about death.  As in – would we die?  What would happen when we died?  Who would take care of him? –  Our friends advised us to lie to him.  “Just tell him you’re never going to die.  He needs reassurance.  He’s just a little kid.”

“But that’s dishonest,” one of us responded.

To which they replied, “Yeah, but if you both die, he’ll be worried about a great deal more than your dishonesty, trust me.  That will be the least of his concerns.”

So…  We didn’t take their advice.  Instead we patiently and carefully explained to Nic that everyone dies, but assured him that we were not going to die for a very long time.  Richard went so far as to say that he was pretty sure medicine would soon solve the whole “death problem” and was convinced that he, anyway, would never die at all, ever.  Eventually Nic, either tiring of our tedious and spurious claims, or just as likely, deciding our responses were so lame he couldn’t cope with them anymore, stopped asking us about death.

I thought about using a similar technique with Emma, but I’m pretty sure she’s made up her mind, regardless of what I may have to say.  She’s very determined.

Emma’s “sleepover” at our cabin

My latest piece My Fear Toolkit published in the Huffington Post

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Waking Nic – Autism

Posted on October 5, 2011 by | Leave a comment

Last night Emma woke Nic up – again.

“No Mom, it was really bad.  She woke me up like five times. I swear Mom, FIVE times,” he held up one hand and wiggled all five fingers at me.

“What did you say to her?” I asked, stroking his somewhat greasy hair, while wondering if I should insist he wash it before school, then deciding he would be late for his bus and anyway it wasn’t all that bad.

“I told her she had to leave.”  He leaned against me, and said, “I told her – Emma!  You have to go back to your own room.”

“What did she do?” I asked.

“She went back to her room.  But then she came back. Like at three, then five, then six.”  He looked at me and pretended to fall asleep, collapsing in a heap on my lap.

“Hey Emma!” I called.  “You cannot wake up Nic.  It’s not okay to wake up Nic.”  But if I’m telling the truth, I was just a tiny bit relieved that she woke up Nic and not me.  I rationalized this “bad mother” thought with – He’s young and can handle sleep deprivation much better than I can.   Meanwhile Nic continued to mime sudden unconsciousness by falling on the ground, back on his bed, then into my arms, like some sort of narcoleptic preteen.

“You cannot wake up Nicky!”  Emma parroted, using her stern voice.

“Yeah, Em.  That’s just not cool,” Nic said.

I told Emma that since she woke up her brother, she couldn’t bring her  beloved “string” (a piece of packing tape) out of her bedroom.  She was very upset by this and said, “You cannot wake Nicky.  But listen, if you wake Nicky no string.”  Then she began to cry.

By the time it was time to go down to wait for her school bus, Emma was calm and said, “It’s okay.  Next time you cannot wake Nicky.  Then string can come out of the bedroom.”

I gave her a hug.  “That’s right Em.  It’ll be okay.”

Emma waiting for her bus this morning wearing a “pretty dress”.

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Wake Up Calls

Posted on January 14, 2011 by | Leave a comment

Last night Emma came into our bedroom every few hours.  The first time was just after midnight, then again at 2:30AM or thereabout, again sometime after 3:00AM and once more, only I was so tired, I can no longer remember what time it was.  The last time she came in, standing beside the bed and looking at me, we told her she had to go back into her room and that we would come get her when it was time to wake up.  When she left, whispering, “Mommy, Mommy come into the other room,” I stayed awake waiting for her return.  Only she didn’t return.  She went back to her room and managed to fall back asleep, something I was unable to do.

So I’m tired.

And when I’m tired things can look a bit bleak.

I know this about myself.

This post is therefore about countering that exhaustion induced bleakness with a more balanced view of Emma and how far she’s come in the last year.

At this time last year, Emma was still wearing a diaper at night.  She was often awake in the middle of the night, unable to go back to sleep without one of us, usually me, lying next to her for the remainder of the night.  Or she would come into our bed, forcing Richard to sleep in her twin bed in her bedroom.  The feeling of utter exhaustion I am currently experiencing was commonplace a year ago.

In addition to the nocturnal awakenings, Emma had a habit of sucking on a strand of her hair, returning home with an encrusted lock, which I had to soak in lukewarm water before brushing out.  Emma was unable to shower by herself, brush her teeth, floss or brush her hair and needed reminders to go to the bathroom. Emma showed no interest in most toys and her language was not as complex as it is now.  Her utterances were in the three to five word category and often were difficult to understand.  Her difficulty distinguishing between pronouns such as “you”, “me”, “I”, “him” and “her” was all too apparent.  More often than not she referred to herself in the third person and often referred to others by calling them – “Emma”.

In the last few months, Emma has become enthralled with one of her baby dolls.  Each night for the past week, she comes home, bathes and washes her baby doll’s hair with shampoo, then wraps her in a towel and puts her to bed.  Her pretend play continues to be somewhat literal, in other words she doesn’t pretend to talk for her doll, she isn’t able to “name” her dolls beyond calling them things like:  doll, girl, baby, etc.  But Emma is showing an increased interest in playing with them, taking on the role of “mother” and spends longer periods doing “motherly” things with them.
This is the first year Emma has shown even a remote interest in Christmas and likewise with her birthday.  She has been talking about her birthday and the party we are giving her for over a month now.  Sadly, few children are able to come to her party, as it falls on a three-day weekend and almost everyone is busy or away.  But despite this, we are making sure she and her birthday are celebrated.

Sometimes it takes exhaustion and numerous wake up calls to remind me of just how far Emma has come.

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“Do You Think She’s Okay?”

Posted on December 3, 2010 by | Leave a comment

This morning I woke as usual at 6:25AM. Merlin, whose internal clock tells him it’s time for loud purring and affection typically paws at my nose somewhere between 5:00 & 5:30. I have always viewed my nose as “distinctive” however to Merlin it apparently resembles a mouse. By 6:40 I was out of the shower and by 6:45 in the kitchen, which was curiously dark and empty. Richard was in Nic’s room waking him, I could hear their voices speaking softly to one another, Merlin mewed at me, demanding to have a treat and Emma’s bedroom door remained firmly closed.
“Do you think she’s okay?” I asked Richard when he reappeared.
“Has this ever happened before?” Richard asked in answer.
“No.”
“Maybe she wants to spend some down time with Cokie,” Richard said, though he sounded unconvinced.
“You think?”
“I don’t know.”
“I’m getting worried.”
“Well what do you think could have happened?” Richard asked.
“I don’t know. She fell out of bed in the middle of the night, knocked herself unconscious or…”
“God, I thought I was the only one who had those kinds of morbid thoughts,” Richard said.
“Think I should go in and look?” I looked over at him. “I don’t want to wake her if she really is just sleeping. Maybe I should give her another ten minutes? Or I could just go in and peek, very quietly. But maybe it’s better to let her sleep…”
Richard, all too familiar with this kind of answer where I am essentially playing both sides of the net, nodded and wandered off.
Nic appeared wearing a short sleeved t-shirt, a shirt he loves and would wear to bed if allowed.
“Nic – it’s not even 40 degrees outside.”
“Yeah, but it’s really hot at school.”
“Please change your shirt.”
Nic returned wearing a long sleeved shirt, the short-sleeved shirt poking out from underneath the bottom. The whole outfit had a kind of disheveled, rumpled chic to it. Definitely not okay for school, however, even though it was “Casual Friday”. “What?” he asked, when he saw the look on my face.
“You’re kidding, right?” I asked him.
As Nic turned to go, muttering under his breath, Emma shot into the study on her scooter.
“Hey! Good morning Em!”
“Good job waiting ‘til it’s light out!” she said.
“You’re not kidding!”
Emma has never slept later than the rest of us, other than a couple of times at her Granma’s house in Colorado and then only after a full week of skiing all day, every day. It has never happened in New York. The wonders do not cease…

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On The Right Track

Posted on December 2, 2010 by | Leave a comment

This morning Emma’s scooter could be heard shooshing through the hallway toward our bedroom. “Hi Mommy!” she said as cheerful as ever, despite the fact it was 4:20AM. I groaned inwardly but managed to meet her cheerfulness with a somewhat less convincing, “Hi Em.” I looked over at her, “It’s too early. You have to go back to your bed.”
Without missing a beat she made a u-turn on her scooter and could be heard to say as she retreated, “You have to go back to sleep now. You have to wait til it’s light out. Then you can see Mommy!”
I literally held my breath, waiting for the screams to shatter the early morning quiet. “Do you think this will really work?” I asked Richard who appeared unconscious.
“Yeah,” he muttered, not moving a muscle.
I watched him for a few seconds for any sign of movement, any sign, which could be taken as encouragement for more conversation. When none came I stared at the ceiling marveling at the silence. Was it really possible? Could it be that she had returned to her room and was lying in her own bed quietly waiting for it to be “light out”? It seemed impossible. This was the last thought I had before surrendering to a fitful sleep. Every 20 minutes or so I woke up, listening for the cries, which never came.
At 6:30AM I rose. As I went into Nic’s room to wake him, I peered around the corner into Emma’s room. It was still quite dark so I didn’t trust what I was seeing at first. There she was, sound asleep in her own bed. I was astonished. So much so that I stood there for several seconds. By the time I’d woken Nic, turned on the lights in the kitchen and dining room, Emma shot out of her room on her scooter looking groggy, but pleased with herself. “Now you can see Mommy! Good job waiting til it’s light out,” she said, congratulating herself.
“That was really terrific Em,” I told her. “Not only did you go back to your own bed without crying, you went back to sleep!” I knelt down to give her a hug. She wriggled away from me, but I caught the smile on her face. “I’m proud of you, Em.”
This is the FIRST time Emma has gone back to bed without –
a) insisting one of us accompany her,
b) screaming when one of us dared not accompany her
c) coming back to our bedroom repeatedly.
“Did you notice she didn’t have Cokie with her when she came into our bedroom?”
“I didn’t think you were even awake, let alone noticing things,” I said.
“Of course I was awake.”
“She’s never done this before. It’s really incredible!”
“We’re on the right track,” Richard said.

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Kisses

Posted on November 2, 2010 by | 2 comments

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

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

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

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

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

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

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

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

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

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

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

“Yes Em?”

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

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

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

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

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

“Are the horses sleeping, Em?”

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

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

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

Hope.  One must always hope.

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A Little Gratitude

Posted on October 15, 2010 by | Leave a comment

Emma stealthily crept into Nic’s bed last night, without waking him and was found by Richard when he went to wake Nic at just minutes before 7:00AM this morning.

“Good job waiting!” Emma said as she bounded into our bedroom and snuggled under the sheets.

Richard, having spent well over an hour with her in the middle of the night getting her back to sleep, was in the other room.  I was getting dressed and said nothing.  I was at a loss for words.  She sounded so proud of herself.  Did she not understand that in fact, she had not slept in her own bed, had gotten up at just past midnight to come into our bedroom where she woke both of us up?  Did she no longer remember Richard went back to her bedroom with her and stayed there until after 1:00AM, making sure she was asleep before returning to our bed?  At some point after Richard left her she must have woken up once more and snuck into Nic’s bed, being sure not to wake him.  After all we told her she mustn’t wake Nic.  Technically she did not wake him, but she didn’t stay in her own bed either.

The night before she was up screaming, “Mommy!  Mommy!  Come!  Mommy come!”  Heart-rending cries, unbearable, the guilt in not responding overwhelmed me.

“I’ll get her,” Richard said, grimly.

For the past couple of nights now, Richard has gone to her before her screams woke Nic, sitting with her for more than an hour in the middle of the night.  Trying to calm her, trying to get her to understand we need to sleep, she needs to sleep, she cannot wake us.  Yet, she does anyway.  It is easy to feel discouraged, despair even, but the truth is, she is making progress.  The 2:30AM wake-up calls are now occurring just after midnight.  She is not wetting her bed.  She is (until last night) staying in her own bed, after Richard returns her to it.

“Mommy!”  Emma cried.  Five years ago, I would have given anything to have her cry out for me.  I would have given anything for her to acknowledge me at all.  Now she does and I groan.  It is Richard who bears the brunt of these middle of the night pleas.  It is Richard who suffers the next day, trying to defog his brain enough to make sense of the work before him.  It is Richard who stumbles through the day, trying to maintain a placid demeanor, not giving in to the impatience, despair and fear that lurk on the edge of his thoughts.

I must get my work done and leave the studio early today so as to be home in time to greet Nic’s bus at 3:45PM this afternoon, allowing Richard to go out with friends who are in town.  It is the least I can do.  I sit here in my studio gazing out at the Chrysler Building, feeling immense gratitude, gratitude for having a husband who places his family first, who demonstrates his love for us on a daily basis.  I am incredibly fortunate.

I have the luxury of enough sleep and a mind clear enough this morning (thanks to my husband) that I am able to remind myself, Emma is progressing.  It’s two steps forward, one step back, but she is making progress.

I don’t know how people do this without an active participating partner.

I cannot imagine.

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Exhaustion

Posted on October 5, 2010 by | Leave a comment

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.

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Autism and the Family

Posted on October 4, 2010 by | Leave a comment

“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.

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“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.”

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The Elusive Pronoun

Posted on September 29, 2010 by | Leave a comment

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.

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“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?”

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Wake Up

Posted on September 15, 2010 by | Leave a comment

5:18AM – High-pitched screams emanated from Emma’s room waking us.

“I cannot believe this,” I said.

Richard groaned in response.

“Sometimes I think she reads our blog,” I said, referring to yesterday’s post.

Richard groaned again and turned over.

“Emma!  You cannot lie in here screaming,” I said when I went into her bedroom.

“Emma bit.  You cannot bite.  It’s not okay,” Emma cried.

“Emmy, did you bite yourself?”

“Yeah,” Emma said, sadly.  “You make Mommy so upset.  Mommy is angry.”

“Oh Em.  You can’t lie in your room screaming,” I said, stroking her bitten arm.

“You have to get Mommy.  Mommy, can I come into the other room now?” Emma asked.

What was incredible about this conversation was not only did Emma identify emotions (mine, not hers), she also asked whether she could come into our room.  I do not remember her ever asking before.  Typically she says, “Mommy come!” or “Mommy go in other room” or some variation of the two.

As we made our way back into Richard and my bedroom I reminded myself that at least she slept through the night until after 5:00AM.  The 2:00AM wake-up calls are, by far, the worst.  In addition Emma did not wet the bed, an added bonus I am grateful for.

After breakfast Emma took my breath away by saying, “Mommy take Emma’s picture?”

“Really?” I asked.  “You want me to take your picture?”

“YES!” Emma shouted, jumping up and down.

“Okay, Em,” I said laughing.  “Do you like having your picture taken?”

“Yes!”  Emma said again, smiling at me.  “Say cheese!” she laughed, posing for the camera.

For more on just how extraordinary this is, go to: Emma and The Camera

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