Tag Archives: autism and sleep

Waking Nic – Autism

Posted on October 5, 2011 | 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”.

→ Leave a comment

Posted in Autism, Parenting, Sleep Issues

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

Wake Up Calls

Posted on January 14, 2011 | 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.

→ Leave a comment

Posted in Autism, language, Sleep Issues

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

“Do You Think She’s Okay?”

Posted on December 3, 2010 | 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…

→ Leave a comment

Posted in Autism, Parenting, Sleep Issues

Tagged , , , , , ,

On The Right Track

Posted on December 2, 2010 | 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.

→ Leave a comment

Posted in Autism, Parenting, Sleep Issues

Tagged , , , , , , ,

The Bedwetting Saga Continues

Posted on July 21, 2010 | Leave a comment

Last night several interesting things occurred.  To begin, Emma asked to sleep in her own bed.  This was terrific news as you can imagine the difficulty a child sleeping in the parent’s bed presents, while one of the parents (Richard) is delegated to the child’s bed.  Forget about getting adequate sleep, the very arrangement is cause for grumpiness to all parties.   So Emma demanded she sleep in her own room.  Down went the ‘water proof” mattress cover, on went the alarm – she had wet our bed the past two nights in a row – and off Richard and I went to sleep in our own bed, even if for only a few hours.  Sure enough, Emma appeared by my bedside at 2:00AM.

The difference was, we were not woken by her screaming, “Mommy come! Mommy come!” which is typically what happens when she wakes in the middle of the night.  The wails increasing in volume and frequency with every second until one of us goes to console her.  If left ignored she will simply scream louder until Nic has woken up too.  No one could ever accuse Emma of being incapable of problem solving on a grand scale.

Last night, however, was different.  There were no screams, no tears, just a small body appearing at my side.  “Hi Mommy!”  She said when my eyes opened.

“Hey Em,” I said.

And then she ran off to go pee in the toilet, unprompted, while Richard made his way out of our bed and into hers.  Emma slipped under the covers next to me and eventually went back to sleep without soiling the sheets.

In the morning Merlin, no doubt, taking his revenge on Emma for threatening him with the washing machine yesterday woke her by meowing loudly in her ear and pawing at her nose to ensure she was fully awake and aware he required some attention.  Emma carelessly pushed him off the bed before rolling over and attempting to go back to sleep.  Merlin, not the least undone by her lack of affection, leaped back onto the bed and sat on top of her hip.

“Come on Em.  Time to get up and get ready for school,” I said.

“No,” Emma said, burrowing deeper under the covers.  “Make pancakes,” Emma said, hopefully.

“No pancakes today Em.  You have to get ready for school.  We don’t have time,” I said.

“Pancakes,” Emma said, whimpering quietly.

“No pancakes. How about cereal?” I asked.

“No, pancakes,”  Emma grumbled.

“Don’t you want some cereal?  I have to go to work soon, but I have time to get you some cereal,” I said.

“No!”

“Okay,” I said.

Five minutes later Emma appeared in the kitchen.  “Cereal?” She asked looking at Richard.

“Sure Emma.  Coming right up,” he said.

Before I left for work I looked at the bedwetting chart we’ve been keeping since June 9th when we began this whole thing.  After a rocky first two weeks, Emma has wet the bed three times in the last month and a half, with two of those times being this past week.

Go figure.

I’m all out of theories.

→ Leave a comment

Posted in Autism, Bedwetting, Marriage, Parenting, Siblings, Sleep Issues

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

Sleep

Posted on July 15, 2010 | Leave a comment

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.

→ Leave a comment

Posted in Autism, Parenting, Sleep Issues

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

Bedwetting (Part III)

Posted on June 30, 2010 | Leave a comment

The night before I flew with Emma and Nic to Aspen, Emma had her first completely dry night since we undertook our anti bedwetting campaign, (June 9th) complete with alarm, waterproof cover sheets, her progress chart and gold star stickers.  Since we arrived Emma has not had a single accident.  This is nothing short of miraculous.  I am looking at her chart filled with notations, gold stars and she has managed five consecutive nights with no bedwetting.

Richard took over when I arrived, giving me a much needed break.  Each morning when Richard reported Emma had not set off the alarm, in fact had waited to pee until the morning or had woken up in the middle of the night, dashed off to pee in the toilet, then came back to bed and fallen asleep again…  I have to admit, I was a bit skeptical.

“Really?” I asked.

“Yeah!  She did great!”

“And she didn’t pee at all in the bed?”  I asked.

“That’s what I’m telling you.  Another dry night!  Amazing!!”  Richard could hardly contain his excitement.

“Wow!”  I said.  So last night I took over as I am taking a seminar beginning on Friday and thought I’d try to do a few nights before handing the reins back to Richard over the weekend.  I spent the night next to Emma.  Every time she stirred I woke up , ever vigilant and wondered whether she would set off the alarm.  But she didn’t.  At one point, it must have been around 2:30AM she stirred, rolled over and I said, “Do you have to pee?”

“No!” she said.

“Are you sure?” I asked.

“No, Mommy!”  Emma muttered and fell back to sleep, as I lay awake watching her.

Someone once said to me during a difficult period in my life, “You have to get out of your own way.”

Now it seems I must learn to get out of Emma’s way.

→ Leave a comment

Posted in Aspen, Autism, Bedwetting, Parenting, Sleep Issues

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

Pee Patrol

Posted on June 18, 2010 | Leave a comment

Dad here, reporting from the front lines of the anti-bedwetting campaign. Ariane had been doing bunkmate duty with Emma for the first six days, and though I had repeatedly offered to relieve her, she hung in there doggedly until I had to stage an intervention after Emma had her worst night since we started (with three changes of bedclothes). Another urgent factor behind me taking the reins was that I’m off to Colorado for a week before Ariane and the kids join me — and she’ll be flying solo every night while I’m gone.

“Take the help while you can get it,” I told her once again.

No argument this time.

The drill during the night is the same as Ariane wrote about earlier – the alarm is attached to her underwear before she falls asleep, and then at some time during the night she and I are awakened by my prerecorded voice shouting, “Emma, it’s time to go pee!” Then I groggily scramble around to her side of the bed, try to get her up and out of the bed asap to minimize the collateral damage. She gets the top sheet wet about half the time along with the blanket we put under her waterproof (not quite!) bedcover. The worst is when she wets the duvet. Lots of time in the dryer.

After the first two days on pee patrol I could really see why Ariane was so sleep deprived. It’s hard to have a decent snooze with one eye open waiting for the alarm to go off.  It made me think of a fireman sleeping in his big rubber boots ready to slide down the pole when the bell starts clanging.

Bottom line, I think Emma is doing great. All three nights she got up once and then didn’t have to go again until the morning. Wake-up time is even earlier than usual – between 4-5:30AM. But she takes off the alarm by herself, goes to the bathroom (with some urging) and then lays around in bed singing until she gets hungry.

She’s a real sport about the alarm and the bathroom scramble during the night too. No complaints, no crying or tantrums, though she does get upset if we can’t get the damn alarm to stop and we both wince from hearing my voice shouting over and over. After we change her bedclothes, nightshirt and underwear, the alarm has to be reattached to her underwear and I must admit I’m still pretty klutzy with it. Sometimes it’s taken me six or seven attempts before getting it on without reactivating the alarm. Interestingly, she took it away from me last night and got it right on her very first try.

Maybe she’s a savant with this stuff. The Princess and the Pee.

→ Leave a comment

Posted in Autism, Bedwetting, Sleep Issues

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

The Bedwetting Saga

Posted on June 15, 2010 | Leave a comment

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.

→ Leave a comment

Posted in Autism, Bedwetting, Marriage, Parenting, Sleep Issues

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

Bedwetting Part II

Posted on June 11, 2010 | 1 Comment

Last night Emma slept through the night without peeing!   (See yesterday’s post.)  In brief we are using a device much like those irritating car alarms except that this alarm is smaller and secured to the shoulder of her nightgown.  I am coming around to the belief it serves a dual purpose and would be an excellent method of torture in warfare against the enemy.

I barely slept in anticipation of the alarm going off at any second and when it didn’t, began to question whether it was in fact working.  To verify, every 15 to 30 minutes I “checked” the sheets underneath Emma to be sure she had not wet them yet.

At 5:30AM the alarm sounded (Emma had inadvertently set it off in her struggle to remove the sensor from her underwear) and since I was fully awake and had been for a good portion of the night, was a bit better at helping her remove the sensor than yesterday’s almost comical attempts.  Only this time, having successfully unclasped the sensor still attached to the alarm, which was pinned to the shoulder seam of her nightgown, I could not shut the alarm (ie my voice) off.  Being confronted at 5:30AM by ones own voice repeatedly shouting – Emma!  Wake up!  It’s time to pee! – was brutal.

Poor Emma having done her part, (peed in the toilet) said to me in an irritated tone, “Turn it off!”

“I’m trying!” I cried.

“Ach!” Emma responded.  It was an utterance of profound exasperation.  Either that or her German heritage is taking hold in ways we could not have anticipated.

I was eventually able to dry the sensor sufficiently to turn the alarm off.  Emma had long since returned to bed, shouting out to me, “No!” when my recorded voice continued to irrationally demand she get up and go pee.

The alarm is certainly doing its intended job and so much more.   We continue –  11 weeks and 5 nights to go!

→ 1 Comment

Posted in Autism, Bedwetting, Parenting, Sleep Issues

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