Tag Archives: Sleep Issues

Wake Up Calls

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.

On The Right Track

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.

Sleep

It has been reported 70% – 80% of children with autism suffer from irregular sleep patterns.   No one seems to know why autistic children have such a high rate of sleep disturbances, though there are some theories.  One theory is the hormone, melatonin is either lacking or in abundance in autistic children compared to their neuro-typical peers.

Over the years, Emma has had a variety of sleep difficulties.  These include everything from being unable to fall asleep until very late, to waking up at 3:00AM unable to fall back asleep until 5:30AM.  (I’ve written about many of these in previous posts. See Sleep and Sleep Issues Part II.)  For the last month we have been giving her melatonin at night, recommended by the neurologists we take her to.  It has been extremely effective in getting her to sleep at a reasonable hour and until last night, seemed to be helping her stay asleep as well.  However, last night broke all records.

Emma fell asleep at just after 8:00PM and then abruptly woke at just after midnight.  It wasn’t one of those groggy-fall-right-back-to-sleep awakenings, but a time-to-turn-on-all-the-lights-and-do-something awakenings.  Alert and ready for action, Emma first began to sing and then demanded pancakes.  In my exhausted state I had a moment when I actually wondered whether she had read my last post – Pancakes – on this blog.  Then I reminded myself she cannot consistently identify the letter p, much less read.

“Emma, it’s not time to get up,” I said.

“Go get Daddy, make pancakes?” Emma asked, though it was said as more of a statement than question.

“No pancakes, Em.  Sleep,” I said, at which point she began to whimper.

“Em, it’s really late.  It’s not time to get up.  It’s time to sleep,” I said.

“Take off alarm?” Emma said handing me the alarm I had pinned to her nightgown after the other nights deluge.

“No Em.  We need to keep the alarm on,” I said, fumbling with the safety pin and trying to put it back on as she fought me.

“No!  No alarm.  Go pee in the toilet,” Emma said and raced off to the bathroom where she peed.

As with so many things autistic, there was the good news and the bad news.  The good news was –  she woke up in the middle of the night and went to pee without prompting.  The bad news was she woke up in the middle of the night and was thoroughly awake, unable to go back to sleep.

“Great job peeing!” She prompted me as she got back into bed.

“Yeah, Em.  That was really great.  Can we go back to sleep now?” I asked.

“Time to turn on all the lights?” Emma said looking at me with a sly grin.

“No.  Definitely not time to turn on the lights.  Time to sleep,” I said.

At some point I must have dozed off as an hour later when I woke, Emma was sitting bolt upright on the edge of the bed, singing softly to herself.

“Pancakes?” Emma asked when she saw my eyes open.

“No Em.  Not til morning.  When it’s light out,” I added.

“Okay,” Emma said.

“How about some melatonin?” I asked.

“Okay,” Emma said.

I gave her half a dose, expecting her to fall back asleep, only she did not.  The melatonin, for once, did not seem to have any effect on her at all.

Eventually at 4:00AM Emma fell back asleep.  It was an exhausting night.

The good news:  she did not wet the bed, despite having removed the alarm and dumping both ‘water-proof’ mattress covers on the floor.

The Bedwetting Saga

Over the weekend Emma had another successful night with no alarm sounding.  We celebrated her progress with stickers and lots of cheering.   However last night, for reason’s unknown, Emma peed, setting the alarm off twice at 1:28AM and again at 3:30AM only to rise fully awake and energized at 5:00AM.   At which time she insisted on listening to Mary Poppins on her Ipod while singing along to Chim Chimeree, Supercalifragilisticexpialidocious among others and clapping.   Thankfully she has an angelic voice.

The challenges of parenting are always interesting, but the challenges in parenting a child with “disabilities” or as I like to think of them – different abilities – are that much more interesting.

I have a friend who had a child born with a wide variety of complications.  He was unable to lift his head, let alone walk or talk.  She used to tease me that I would call her to have lunch when I was feeling depressed.  And I would answer – You’re right!

As trite as it is to write – someone always has it worse.   Reminding myself pulls things back into perspective.   Yes I’m tired, but getting Emma out of diapers is something that will bring her one step closer to her neuro-typical peers.

Richard, who every night since we began this ‘project’ has volunteered to take over the bedwetting monitor position, will be taking the reins for the next few nights.  I cannot imagine trying to do this on one’s own.  And I am referring to all of it.

Sleep Issues (Part II)

When Nic was almost a year old we “Ferberized” him.   Dr. Richard Ferber, a pediatric sleep specialist out of Children’s Hospital in Boston wrote a controversial book – “Solve Your Child’s Sleep Problems”.    The method is to follow a regular bedtime routine, then put the child to bed while still awake.  One is advised to leave the child for increasingly longer periods until the child falls asleep on their own.  Some feel it is traumatizing for the child, leaving emotional scarring.   We tried a number of methods to get Nic to sleep in his own bed, but none worked.  When we Ferberized him it took about ten days for him to be able to sleep on his own.  Nic has had no sleep issues since.

Richard and I decided we would try this method with Emma so we dusted off our copy filled with pencil notations and charts from our time with Nic and put it’s concept to work.  Emma seemed to respond well, within a few days she was falling asleep on her own.  We both sighed a huge sigh of relief and shoved the book back on the bookshelf.  After a few months of calm, Emma began getting up in the middle of the night again.  We tried putting her back to bed and leaving.  Within seconds her shrieks could be heard throughout our loft followed by the sound of her feet running over the wooden floor heading into our bedroom.  Over the years we have tried a number of different methods, but nothing seems to last for more than a few months.  Inevitably Emma returns to her irregular sleep patterns.

In the past year, if left to her own devices, Emma falls asleep between 9:00 and 9:30PM, waking at 5:00AM.  We consider ourselves lucky when this occurs.  We have had months of her falling asleep by 9:30PM only to wake at 2:00AM, unable to go back to sleep until 5:30AM.  We then have to wake her at 6:30AM so she will catch her school bus on time.  Meanwhile neither Richard nor I have been able to fall back asleep and are operating on about three hours of sleep.  A couple days in a row of this and I, for one, am grumpy, jittery and relying heavily on increasing amounts of caffeine to get through a day at work.

Richard and I think Emma’s sleep pattern is exacerbated by the fact she still wears a diaper to bed and does not seem able to wake herself to pee in the night.  We do not allow her to drink any liquids after 6:00PM, have her urinate before going to sleep and yet she still pees between 1:00AM and 2:00AM. Because she’s so big, our choice of diapers have become limited and so she pees through the diaper and into the bed every night.  (Emma is toilet trained during the day.)

We have done some research and her condition appears to have a name:  nocturnal enuresis, which apparently affects some 5 – 7 million children in the United States alone.  Evidently a bed wetting alarm system has had the highest success rate in treating this problem.

Whether solving her bed wetting issues will also solve her sleep issues is questionable.  We intend to tackle the bed wetting first and see what we can do regarding the sleep.  (To be continued)

How about a little humor here?  I’m all out, but if I think of something or hear something I’ll post it.

Sleep

When Emma was an infant she slept an extraordinary 22 hours a day for the first four days.  As her internal discomfort increased, her sleep in direct correspondence decreased.  I remember the first day she refused to nap.  She was just over a year old.  I brought her home from the playground, placed her in her crib and tiptoed out. Within five seconds howls emanated from her room.  I raced back in to see her plump little legs kicking the air, her cherub face beamed at me.  Okay so there was to be no more napping.

Thankfully Emma slept through the night and other than seeming to need much less sleep than other children her age, she slept a “normal” amount of time.  As with all of her “autistic” behaviors (for lack of a better word) as they began to intensify at around 13 months of age, her sleep patterns became increasingly erratic.

While Nic was falling asleep at around 7:30PM and waking at 6:00AM, Emma did not fall asleep until 8:30PM.  Each year she required less sleep, going to bed a bit later and waking just a bit earlier.  I cannot remember when she began waking in the middle of the night.  I think it was four or five years ago.  She woke as though it were morning, fully awake and ready for all of us to DO something.  Usually she was happy, even excited to welcome in a new day.  And utterly unaware of the hour – 2:00AM – or that no one else felt the same unbridled jubilance she was experiencing.  She ran into our bedroom squealing in delight, usually carrying an armful of picture books, photographs spilling from her hands onto the floor.  She plopped her books down onto our bed before turning on all the lights and climbing on top of us.

I remember thinking this was an unfortunate phase, which undoubtedly she would grow out of.   But when days slipped by and our level of exhaustion increased we felt we had to do something.  But what!?

(To be continued)