Tag - sleep

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July 19: A Little Oops Goes a Long Way
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July 14: Another Day
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Not Sleeping
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Star Date: Jan. 2010
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Stalking Sleep
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Home
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The Nights
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Sleep is What I’ll Do Next Year
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Sweet Sleep
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Worshipping at the Temple Grandin

July 19: A Little Oops Goes a Long Way

After five nights of being on the risperdal, we are seeing some amazing things.

He hopped off the couch, went to Twins Dad and said “Go Potty? Okay.” marking the very first time he’s ever initiated at home. I don’t think I can overstate how huge this is: 90 percent of what I say to John has to be: “Do you have to go potty? John, potty? Potty?” If the answer is yes, then he repeats the word “potty,” if no, his answer is to ignore me. It is a reliable method of keeping him dry, except when it’s not. Being ignored is not a satisfying answer when I see him doing the potty dance.

And just hearing myself ask him over and over makes me feel that one day he’ll be telling a therapist “…all she ever cared about was if I had to go potty.” Wait — that would be great, right? I digress.

He told someone he had to go! which means he’s recognizing the signs in his body, which means he’s a little more focused. Yesterday while at the pool, he told me too —”Go potty? Okay.” We rushed to the bathroom, arriving just a little late. He looked at me and said, “Oops!

He said “Oops!” It made my day. Oops tells me that he knew he made a mistake (a forgivable one since I showered him with praise for telling me he had to go). Oops also tells me he wanted me to know he made a mistake, that it’s not what he intended. I don’t know if or when he’ll independently take himself to the bathroom, but I am so hopeful now that he’s made this leap.

There has also been glorious sleep. The first four nights, he still awakened and rushed to our bed, but instead of hysterical laughter there was silence, instead of manic jumping, there was peaceful slumber. I don’t know if it’s here to stay — I feel like tossing salt over my shoulder just for sharing the words…

Last night, John stayed in his own bed.

July 14: Another Day

I’m so grateful for this community. Thank you for your messages (and calls!). As they say, tomorrow is another day — and today was a better one.

We met with John’s neurologist and after much discussion, have decided to try risperdal to see if it will decrease his manic night-time episodes and maybe even lessen the daytime stims. It feels like this awesome decision though, which is why I made Twins Dad come home in the middle of the day just to talk through my fears of anti-psychotics with the neurologist. We are assured the dosage is small and may or may not help, it’s all a shot in the dark. Not the vote of confidence I’m hoping for, but…

I am desperate. Desperate. And I know medication has helped many of you. Our neurologist assures us the dosage is tiny and it might actually do wonders. Please, please, please. Please sleep.

I worry that he’ll turn into a different boy. Yes, the stims are excessive and often prevent him from focusing and learning, but he’s so exuberant otherwise, so alive. Part of me fears that will be tamped down. I don’t want him to change, I just want him to sleep.

Not Sleeping

In my humble albeit exhausted opinion all autism research should focus on sleep and the lack thereof.

Ohmygodohmygodohmygod. There has to be some medication that will keep my child asleep at night. John has been on clonidine for months now and our nights used to look like this:

  • medication slipped into a small bowl of yogurt one hour before bed
  • one hour later: asleep
  • 2 a.m. running and crashing into our bed
  • 2:15: asleep until morning

Then about a month ago John started waking up absolutely drenched in sweat, like his body was afire. I’d change his pajama top and put him back to bed. An hour later he would still be awake. Had it stopped working? It seemed to me that the clonidine was now having an adverse effect. I called the neurologist, told him my fears and he said we could start weaning him off of it.

We’ve halved the dosage and are experiencing manic nights again — just like the good ol’ days. He hums in the dark, a new vocal stim. He yells “Downstairs?” and “Mommy’s itouch?” while pounding the pillows and pressing his cold feet into my back. He holds his hands tightly over his ears. I strain to hear what he’s hearing… a clock ticking, a fan gently whirring…I barely notice it, but it’s assaulting his senses here at 4 a.m. in the dark.

With an average of three hours of sleep a night, I am the saddest, angriest, clumsiest, barely functioning ball of nerves. I have zero patience and what feels like zero control over my life. Melatonin is like popping candy for all the good it does these days. Where is all the research on this problem? I can deal with autism, really, but this? This is my kryptonite.

Star Date: Jan. 2010

These are the voyages of sleepless John, as told by his exhausted mom.

Night comes and we start off hopeful. The boys go to bed with minimal fuss and we settle in for some tivo’ed show, like House or Ace of Cakes, or even a game of Boggle. We sigh, content for the moment, the day and its hurried pace behind us. The clock gets closer and closer to midnight. Husband goes to bed at 11 and the mom, who is just a little greedy, hangs back — loathe to leave the quiet, her glorious time alone.

And every night, of course, she thinks This is the night it will be different. But we are under siege.

January 7, 2010, 1 to 6 a.m.: John is up and ready to go! Five hours straight! His endurance is remarkable, his commitment to the same laugh track, earsplitting.

January 8, 2010, 1 a.m.: John dives into our bed and conks out, sleeps through the night! Is there a full moon? Which planets’ alignment produced this miracle? Please, dear god, how do we replicate these conditions?

January 9, 2010, 12:45 to 5:00 a.m.: John is up and jumping! Tonight’s entertainment features Elmo and silly talk, but then he crashes after a mere four+ hours until nearly 10 a.m.

January 10, 2010, 1 a.m.: It’s 1 a.m., folks, John doesn’t want to be late! But inexplicably, he falls back to sleep until 2:30. Another energy burst hits and he is up until 6 a.m. And then crashes until 8:30. Mad dash to school.

Crazy times around here. People tell me I look great for not getting any sleep. The truth is the body adapts to sleeplessness. It doesn’t function very well, but it adapts. We’re getting back in to see the neurologist and looking into a sleep study. Thanks everyone who commented and emailed me with suggestions.

Stalking Sleep

He flicks his fingers close to his eyes in the dark. The shadows in the room make it seem like an attack of butterflies around his face. They come hard and fast and are followed by head shaking and loud outbursts — not like he is scared, because then he laughs — but more as if he is excited and retelling some complicated tale in the dark.

He has joined us here in our king-sized bed, the one we so wisely upgraded to when we moved home last year, because 2+ hours of loud shouts and maniacal laughter have already woken his brother once. He volleys between his dad and me, seeking us out with tight hands and cold feet. I glance at the clock: 3:30, he’s been at this for more than two hours. His body nearly hums with energy, with something new — I don’t know what it is, but tonight it scares me because it has a different quality — it’s an involuntary compulsion.

I envelop him with my arms and hold him close. “Shh…” I say, stroking his forehead, trying to get him to stop. He is so strong for just five, for such a skinny boy. He pulls away and turns onto his stomach and starts hammering out a beat with his hands on the mattress: b’dum, b’dum, b’dum-b’dum-b’dum, b’dum, b’dum. Over and over.

I try again, whispering a song to try to snap him out of it: “Row, row, row your boat, gently down the stream…”

“Bed!” he yells suddenly.
I say “John’s bed?”
“John’s bed!” he repeats.

Thrilled he’s communicated something (which I immediately expand in my head to Gosh, Mom, I just wanted my own bed, do I need to mime it out for you?) I carry him to his room, hopeful that he will lie down and fall back to sleep at last.

Instead, he stands in his bed and throws stuffed animals around, yelling to me: “Lullaby songs?”, his favorite music CD, one he’s been falling asleep to now for years. Lately, however, he’s asked for it even in the middle of the day — retreating to his room, alone, pushing me out the door. Bye? he urges, then closes the door. I’ve peeked in to see him organizing his stuffed animals in a circle: first the cast of Sesame Street, then the Backyardigans, then all the miscellaneous penguins (there are many). Obviously in John’s world 3:30 a.m. is no different from 3:30 in the afternoon.

But this — this energy, this yearning for something — the push and pull of his body, the drumbeat on the mattress, the finger flickers, these are things he may do during the day, but at night are magnified a thousand times. We’ve had MRIs, EEGs, we’ve expressed concerns about possible seizures — MRIs have been clean, no sign of seizure activity.

And still: something seems wrong.

He’s been on clonidine for three weeks now, but you would never know. When the neurologist said he had a medication in mind for John, it was all I could do to not jump into his arms and kiss him. I first heard about clonidine from Christine over at Day Sixty-Seven. Oliver’s early success on it thrilled me and made me hopeful that it would be the magic bullet we needed for John.

Lesson 1 — there are no magic bullets.

Lesson 2 — if we know John will be up at least every other night from 1 a.m. on, we really should go to bed ourselves before midnight.

Happy New Year, blog friends.

Home

After sixteen weeks and four days, we moved back home. It took nineteen weeks and four days for the first uninterrupted night’s sleep. It’s happened twice so far, and while I’m not holding my breath, each day we’re back it seems a little easier, the boys seem a little more sure we’re home for good.

I know I’ve been gone from my blog for far too long. Getting settled again has taken time — boxes and boxes to unpack and resort. Every article of clothing we owned was whisked away after the fire and professionally cleaned. It all returned neatly pressed on hangers under plastic. I’ve had to come to grips with the fact I’ve been carting 30 pairs of jeans around for the last 15 years. Will I really ever fit back into those size 10s? Lots of purging going on, and I’m happy to say I’m down to just three pairs.

There are many things I discovered about myself over the last four months. One is that I can survive on a lot less. We have made three trips to the Salvation Army already and are still purging. I literally feel lighter as all of these things leave our house.

The boys. So much to talk about with the boys. Sam is really doing great in his typical preschool and is besotted with a boy who possesses the name of one of the Thomas and Friends engines. If this were not compelling enough, they both share a love of the trains themselves. However, the other boy is a bit of a bully and can barely tolerate Sam’s adoration. Every time I pick him up, Sam shouts as we are leaving: “Bye, Gordon! Thanks for playing with me!” while Gordon barely acknowledges Sam’s effusiveness. However, after our first parent-teacher conference, I was told that he is one of the easiest children in the class and also one of the most self-aware four-year-olds they have met. The consensus seems to be that he should be fine in kindergarten next year. We are crossing our fingers. At the same time, the county is getting ready to move Sam up to a less restrictive special ed preschool class in the next few weeks.

John is both more engaged and more autistic. There never seems to be an hour when he is not stimming with his hands, flicking them about with silly talk. According to his teacher, the biggest barrier to him learning is this stimming. It really troubles me and makes me want to try to eliminate wheat or dairy or something to see if he eases up on this. It interferes with everything, not the least of which is his interactions with us. And yet — there are moments, albeit brief, when he is engaged and laughing and just there. Actual pretend play: bringing my head down to his level and saying, “Sleeping” as he demonstrates with the cutest pretend snore.

Lots to share. Hope to be back blogging more regularly.

The Nights

Twins Dad is gone for the week — on business. This means that I’ve been on 24/7 mom duty to two boys who WILL NOT sleep through the night in this hideous apartment. Last night we were up from 2 until 6. I awoke to two boys jumping around on my bed, vying for the spot closest to me. They snuck in, no cries for me to come running — it’s become their late-night act. I marched them both back to their room and attempted to squeeze myself between them on the floor. Crying from one, maniacal laughing from the other. I tried music. I tried rubbing backs. I tried threats and bribes. I offered juice, changed a diaper, THEN changed wet sheets. I yelled, I’m not proud, I have no patience anymore. I threw things across the room — soft things at least, pillows, stuffed animals. There is no fury like that of a mom going on no sleep. And then, I hate to say it, I wanted nothing more than to walk out the door. Just leave. Let someone else do this because I am losing my mind. What kind of mother does that, thinks that. Well, I’m sure I’m not the first. I hope.

At last, Sam was out. John continued his silly talk and puzzle fingers until I held him tightly to my chest, feeling his breath rise and fall as he gave in to sleep, just as the sun started peeking through the edges of the blinds.

Sleep is What I’ll Do Next Year

Thank you to everyone who emailed or posted suggestions about our sleepless nights. We are still sleepless ’round these parts but have fallen into a better rhythm. We increased the melatonin dosage after consulting with our pediatrician. It still is magic getting them to fall asleep, but John continues to wake every night between 1:30 and 2:00. What’s new is that instead of the manic hours spent wide awake, he has started coming straight to our bed, climbing in between us, and going back to sleep — probably two nights out of three. I can’t help but wonder if this is now turning into a behavioral problem (i.e., he can’t fall back asleep without us).

But hey! Sleep is sleep! Who cares if there’s a four-year-old fighting for covers?

Of course last weekend, we spent one extra-miserable sleepless night when the apartment we’re staying at flooded. Yes, it really did. Flooded. After noticing how fast both boys seemed to be having “accidents” while playing in the living room, I sat down on the floor next to them and quickly realized they were playing on saturated wall-to-wall carpeting. We were moved to an upper floor apartment while they brought in fans and hauled out soggy carpet pads.

I don’t think I could have written this past year.

Repairs on our house have progressed but not nearly quick enough. We have walls and a ceiling and fresh coats of paint… but still no floors and to add to the mess, newly discovered water damage in the basement. When extinguishing the fire, the fire department was able to keep water damage mostly to a minimum, but not enough to prevent it from trickling all the way down two floors. Now the basement ceiling will have to be removed and aired out.

End of October. Maybe.

Sweet Sleep

When it’s good, it’s very good: a solid twelve hours. When it’s bad, well, it’s pretty awful. Sleep, that is. Last year there was a four-month period that I didn’t think I’d survive. When you’re struggling, it’s hard to imagine that it will ever get better — that it does.

Last summer, when the boys turned three, we decided to try transitioning Sam out of his crib and into a big boy bed. At the time, there was no way that John was ready and we wanted to see whether the bed we chose would even work.

Their birthday seemed the perfect occasion (Let’s make a big fuss! You’re THREE!, See all the presents? — LOOK, you have a new BED!) Sam grinned ear to ear and immediately just got it. At the appointed hour, he jumped under the sheets and shouted out instructions:
“Turn off lights!”
“Turn on music!”
“John in crib!”
“Mommy, Daddy: Kitchen!”

We never expected that he would go right to sleep (he did) or that he would wait for us to get him the next morning (he did).

After two weeks of this arrangement, I started to feel guilty. Poor John, still being plopped into his crib! So not fair! We went out and got the second bed, set it up, and got ready to move him into it. Look John! Your own big boy bed! We crossed our fingers and prayed it would be easy.

The first crash was followed by loud racing and happy talk. For the first three nights, we decided we’d let him explore, let him enjoy this new freedom. Before retiring, I would go in and scoop up his sleeping body off the floor and deposit him back in his bed. Not easy, not Sam certainly, but we were getting there, right?

Well on the fourth night, Sam revolted: when John got up, so did he. The running, the diapers strewn all over the floor, the drawers upended. Then the sobbing began, the tearful wails for Mommy and Daddy, which is how we got sucked into the No One Will Be Sleeping In This House Tonight vortex. Nobody handled it well — I’m pretty sure I yelled. A lot. Routine is the law for kids with autism. Routine is the law for exhausted parents of kids with autism.

So John returned to his crib and everyone — especially Sam — was relieved. He was once again able to fall asleep. John, for the most part, seemed content to return to his too-cozy crib as I squashed my feelings of guilt. Several months have passed and I’ve watched how tall he’s become — 41 inches! — he so clearly has outgrown it. There’s no doubt he needs to move to a bed, but how? God help me, I really don’t have the energy.

Well, John had his own timetable.

Last week he had a night terror. I tried to calm him but he bucked and screamed and was wide-eyed with fear — I’ve never seen him so agitated. Every time I tried to put him back in the crib, he’d arch his back and scream. Finally, out of exhaustion and because Sam was now awake, I lay down with him on his big boy bed, the one that’s been waiting for him, all made up in a room made small by two beds and the lingering crib. I lay there with him and slowly, at last, he fell asleep.

The next morning, I held my breath as I went in to get them up for school. John was sitting in his bed, smiling. If a smile could light up a room, this smile was sunshine itself.

We didn’t want to lose this opportunity, so the next night we put them both to sleep in their big boy beds. I told John, very sternly, You must stay in your bed, John, okay? You’re a big boy now and we stay in our beds until morning. I was prepared to go in a maximum of three times before giving up and returning him to the crib.

I didn’t go in even once.

He slept through without a peep. He doesn’t have many words and isn’t able to verbally express himself yet, but the look of utter happiness and pride on his face the next morning made me cry.

Six straight nights.
When it’s good, it’s very good.

Worshipping at the Temple Grandin

This past week I went to hear Temple Grandin speak. Ever since entering the world of Autism, hers is a name I’ve heard a lot about and I was curious to see what she had to say about growing up autistic. Even though the title of the lecture was “Animals in Translation: How Animals Think and Feel,” I found her mesmerizing. Rarely have I attended an event where the speaker had my complete attention. She spoke easily and authoritatively on her autism and seeing the world from an animal’s point of view. (you can hear her webcast here)

In addition to this gem: “Aspergers is just a medical name for a nerd,” (she really was funny…ah, would that it be so), she talked about horseback riding therapy and said she has heard many a nonverbal child utter their first word atop a horse. (Is two too young to start?) I got the chance to speak with her briefly afterwards and found she’s a big proponent of the GFCF diet. I’m seriously considering this as John’s stimming has become more and more constant.

The more she spoke about being able to see the world from the point of view of animals, the more I thought about John’s sleep issues and wondered if I could somehow “see” what he’s seeing when he awakes so loudly, so abruptly. Is it too dark? Is it too bright? Is he cold? Is he hot? Is he scared?

That is how I came to change the nightlight in their room to a smaller one with a softer glow.

That is also how I found myself at my dusty old sewing machine creating a weighted blanket with beans (the first, at 5 pounds, was way too heavy; the second, at 3 pounds: just right) that has really seemed to make a difference. Three straight nights without a wakeup…!

(crossing fingers now)

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