Showing posts with label No sleep. Show all posts
Showing posts with label No sleep. Show all posts

Wednesday, September 21, 2022

What It Takes

40% of parents of autistic children suffer from sleep sleep disruption due to fear of elopement

I have over 90 hours of respite every 3 months. I have not been able to use it in over 7 months because there are no workers I can trust to be with my son. I have gone through 2 agencies and asked my regional center for help and still I cannot use my respite hours. 

I am lucky that we have ABA - literally thanks to Feda and other Autism Mom advocates - and a great school (who sponsored a symposium where I was able to meet and speak briefly with Feda). Also the support of family and friends. But still I am way short of sleep and time for myself.

Elopement seems to ebb and swell with my guy. So far this year, it's been on high for extra long. The sofa has become my bed and have signs and bells on my doors to deter eloping. Many nights I feel like I am holding my breath in case I miss hearing something. I made sure my kids both had swim lessons until they knew how to swim and made sure to introduce them to the river and ocean so they know how to respect them. I memorize what he's wearing before he goes out the door and have photos on my phone to show in case he does elope.

My guy is generally sunny. He has a good sense of humor, and can be sneaky.  He is kind to our kitties and helps with the chores. He is also 17 and wants to get out and explore.

I am still sleep deprived and have been for years. But so far, he is safe. Through fires, moves, divorce, upheavals, awful school settings, COVID-19 isolation, we are still here. Not everyone is so lucky. 

Please take a moment to view this Autism Safety Awareness video to get to know more about autism. Then visit the September 26th site and read about tools and information you can use. It can literally save your life.

Sunday, November 05, 2017

Falling Back, and Back, and Back

So, have you set your clock back yet, all you Daylight Savers? Oh how I look forward to this: Reclaiming some lost sleep. In theory. I have learned to temper my hopes.

This year, recalling past early morning halls of OMG fame, James woke me up at 3:something, 4:30am, 5:15am, 5:35am .... and then I lost count.

The first time, he merely announced he was awake. Second time, I heard his stomach growling as he prowled the hallway. I directed him to go make himself some waffles, and he did.

Interlude.

One of the next times, I was roused to the sound of someone jumping on his bed, which has no frame. A quick knock-knock quieted that fun.

Then the pacing and marathon of door opening and shutting. I forget what time that was. Provided clear direction to go to his room and use his Kindle quietly and STAY there for at least an hour.

Turned over to try and rest some more.

Then the neighbour with the horribly effective subwoofers turned on his TV.

OMG.

The apartment is still throbbing as I type.

Sleep deprivation: always fun. Not.

Saturday, July 19, 2014

Sleep Deprived Morning# 2,842

Four thirty am wakeup. Augh. Colour me cranky and wilted.

Dude. You've got some
serious 'splaining to do - yarrr!
I was rousted from sleep and bed when James spilled water on his blankets, prompting howls they dry out Right. Now. Helped him rearrange his blankets and he refused melatonin, which would have helped him fall back asleep. He spent the next two hours humming & talking to himself in bed, punctuated with prolonged trips to the bathroom (that I had to get up and end when they ran past the 10-minute mark).

Past the usual time, he asked politely to play on his iPad ... which lasted twenty minutes before he started yelling at the new Angry Birds Game. Couldn't get him to stop yelling or change games. Finally took the iPad away, which resulted in a howling meltdown. HOWLING.

This is not like James. I know he is tired and fighting off a cold, but that is a distant thought when I need sleep as much as I did this morning.

Thanks, Steve!
So the way to deal with howling meltdowns recently: stay close by quietly and let him vent for a short amount of time. Talk soothingly. Let him know I hear him and get that he's frustrated and angry. Wait for him to calm a bit and then ask if I can give him a hug. Break the behaviour with a distraction, which this time was to come out and watch the video he'd gotten from the library: Blue's Clues. He had some breakfast.

James is doing much better now. He even came over and apologised twice for waking me up so early.  I am on my second pot of coffee. We're about to do the grocery shopping soon and he's looking forward to helping out. I am looking forward to a nap and an extra-happy Happy Hour this afternoon.

Epilogue: James just came over and felt my forehead, diagnosed me with the flu, and told me I should stay home from work and REST. Then danced away. Saved again by a sweet bedside manner!

Tuesday, May 27, 2014

Who Needs an Alarm Clock?

Between the neighbours who gun their cars at 5:00am, and their cars' noisy engines, which in turn wake James, I will never need an alarm clock again.

Fortunately, I have had a constant presence of cats in my life. Over time, they trained me to early morning wakings and corrected my habit of sleeping in.

Even more fortunately, James wakes up happy. He is infectiously gleeful, almost instantaneously upon waking. There are worse ways to start the day.

Saturday, June 29, 2013

Haiku Fever

It's been a rough two weeks of viruses robbing us of sleep and health. I am somewhat punchy, as a result. This is not how to spend a summer vacation.

I think I have Haiku Fever:


Stabbing pains cause moans
that rip sleep and peace apart
stop, oh stop, oh stop!
....................

Skin burning, eyes red,
run all night like the Undead - 
Mom's a vampire now
....................

Noun, noun - who's got the
noun? Not I, evidently;
try again later
....................

Mt. Washme rises
from the floor in our garage.
No more eruptions!
....................

Housebound, an island
Where is Mindy Roberts now?
Miss her haiku fun
....................

Medicine in white,
so milky, and more desired
than vile fruit punch taste
....................

Summer - is it really?
Seem to spend way too much time
huddled in blankets
....................

Monday, May 27, 2013

Rough Night

James and I had a rough night last night. Both kiddos got me up with bad dream trauma. The first time, around 3am, they both woke up at the same time. There were huggings and calmings. James asked me to sing the lullabye from Tarzan to him. I could hear his innards churning, but he calmed down enough to ask to go back down to sleep.

Half an hour later, the moaning began. Oh no. Not again.

I sat up with him and told him stories. He got louder. I got out the towels. The inevitable happened, but it was short-lived.

James asked me to leave the light on in his room, which I did. About 4:50, I thought the worst was over and went back to bed, one ear as open as possible. James got me up again around 7, with a happy "It's morning! Is it morning, Mommy?"

Yes, yes it was. By the time I made it into his room, he was on the floor, playing with his Leapster. One look at the bed showed me how he'd spent the rest of his night:

Math cards, alphabet puzzle, and Leapster.
iPad served with breakfast, which he ate.
That's my resourceful guy.

Sunday, April 28, 2013

I've Got My Work Cut Out For Me

Well, I'll know what I'll be doing today:

Note: Allergies and stomach flu do not mix well.

I had to give James some of the anti-nausea pills that the ER doc gave me the last time he started yammying and could not stop, once started. The climax after that was pretty awful.

Then we both got 3 hours of sleep.

This morning he's taking on electrolyte water (I love you, Trader Joe's), blowing up the Death Star (go, you Angry Birds!) and has kept down 2 yogurt tubes.

Meanwhile, I love my washer and dryer.

Thursday, January 17, 2013

Morning at the Med Center

After another rough night and early morning, I brought James in to see the doctor. I wanted to rule out everything else (e.g., ear or throat infection, stomach bug). Because I wanted one of the first appointments of the morning, we saw a new doctor. She introduced herself to us and told me she'd reviewed James' chart as well as the information coming in for today's visit before asking me about my concerns as she checked James' breathing, ears, and throat. She was very calm, thorough, and quick. She did however, have concerns it might be appendicitis.

Oh God. 

This, this, this, and this flashed through my mind, and I teared up.

I explained as calmly as I could to the doctor that we'd been this route before, and it was rather traumatic and we really didn't want to do another ER stint unless it was absolutely necessary. I give her all kinds of kudos because she did make it a much more positive experience for us, while still taking steps to make sure we were not dealing with appendicitis.

First, she ordered an x-ray of James' digestive system, which could be done on the same floor of the building. She had a wheelchair brought so that James would not have to walk. The x-ray was quick and efficient. James even perked up because he thought the technician was cute. We were soon back in the waiting room, and the new doctor saw us before I could get halfway through a short Winne-the-Pooh book.
This makes sense if you read down to the end.

Next, she showed us BOTH his x-ray, and answered our questions. Because yes, James was interested and asked "Is that me?" I loved how she communicated with us. The image showed some constipation and air in his intestines, as well as a stomach full of even more air. So the diagnosis now leaned more towards constipation. The doctor offered having an enema done down the hall in the Treatment Room and then recommended getting blood drawn to definitely rule out appendicitis. That being far preferable to an ER trip at another facility a mile or so away, I agreed.

Well, the enema triggered nausea and yammying. Not much happened at the other end. I did, however, manage to get a urine sample. There was a bit of a mess. How weird am I to be happy that it happened in a med center and not the car or our house? After it was over, we had no BMs, but a much more relaxed guy.

I did a quick emergency call to his Nana to please bring clean jammies and underwear. While we waited, James was able to lie on a padded gurney and watch a movie, covered by a beach towel from home. The doctor came back to check in. She told me the urine sample had no indicators for appendicitis and asked James to jump up and down on his toes, which he did. She then told me she didn't need a blood test, that James would not have been able to do that if he'd had appendicitis.

I almost kissed her feet, I was so happy. Everything was checked out with a minimum of fuss and delay and a maximum of compassionate assistance. James could go home to rest, and they even sent some suppositories home with us to try later tonight and tomorrow. Good Lord, I hope they work!

This looks like a cool x-ray app for the iPad - I think we'll check it out. Click the image above for more info.

Thursday, November 24, 2011

Too Early

James woke me up at 5-frickin'-ack-emma. And I really needed to sleep in, because I've been touched by a tummy bug. And I have to cook some dishes for Thanksgiving.

He is so lucky he is cute.

Slowly drinking coffee and coming up to speed. Luckily my good friend was up for some early morning texting. She's recovering in the hospital.

Family and friends, for you I give thanks (we can skip those 5am wake-ups & sick bugs).

Sunday, November 13, 2011

A Transcendental Day (& Night)

After 2 full days (and 3 nights) of James being sick and crying, I decided it probably wasn't the flu that was making him so sick. I called for a weekend appointment. Unfortunately, the earliest one was nearly 4 hours away.

Deciding to make the best of a rather crappy morning, I bundled up James and put him in the van, telling my husband that I'd take him for a drive until the appointment, so at least he and our daughter could get some rest. My head ached from lack of sleep, stress, and the prospect of several long, bleak hours to kill on the road with a sick, wailing child strapped in behind me.

And you know, instead I had a morning that I will remember for years to come. Absolutely amazing and gorgeous. The mist was slowly rising up off the vineyards, whose leaves ranged from light green to gold to flaming oranges and reds as they rolled over hills and filled the flatlands. The redwoods and evergreens were towering and dark green on either side of the road. The rising sun would cut in through the fog and light up dead moss and yellowing vines and leaves in the foreground. Despite worrying about James and being slowly driven mad by his toneless stimming, I enjoyed the heck out of all that beauty.



We stopped for a few minutes by the River, and I was able to take some photos. I held James for a bit in my arms, and we watched a commune of ducks as they flocked to food underneath a tree, quietly quacking to one another as they mingled and munched. We drove across the River on a beautiful little bridge and down a side street that was slowly being taken back by the redwoods. And darned if we didn't see ... a splatty witch, one of James' most favourite Halloween things ever.
Duck brunch.

On a bridge to Nowhere ...

Watch out for that tree!
We meandered down to Jenner and up the coast for a bit, then turned around and headed back inland to the med center. We arrived very early, and I used our steadfast double stroller to transport James. To keep him from driving the other patients in the waiting room mad, I strolled him gently up and down the corridors until our appointment came. Once installed on the exam room table, James' turned to exhaustion and he nearly fell asleep before the doctor arrived.

The on-call doctor was very kind and seemed to size up the autism and health situations with James very quickly, even though I am pretty sure he'd never seen him before. I was rather surprised to hear that James did not have the flu or tummy bug, rather the yammying was due to excess of phlegm, bronchitis, and the beginnings of infections in both ears. The doctor was very kind to me as well, saying that unfortunately, James had to kind of get to this point before he could be helped by antibiotics so I did well to bring him in today, rather than earlier or later.

So we got his antibiotics, pain reliever (suppositories, just in case), and albuterol inhaler and headed back to the van. As soon as James was loaded into his car seat, I gave him the antibiotics. Over the course of the afternoon at home, I was able to also administer the albuterol and some food (the doctor said he could even have dairy products). He rested on the sofa and I noticed he'd stopped moaning and doing the verbal stims. He told me that his throat had stopped hurting. He took a nice nap and took more food. Within half and hour of the food, he was sitting up and talking again. As I type this entry, he is singing along (in his own words)to a Baby Einstein video.

From my big purple armchair I salute Alexander Fleming, Edward Abraham, Clodomiro Picado Twight, and others who brought us antibiotics. The difference between James of this evening and this morning is literally like that of night and day. Between James feeling so much better and the unexpectedly transcendent morning, my day has undergone a transformation for the better as well.
 

Thursday, June 04, 2009

A Bad Idea

Note to anyone putting James to bed: Do not put shape sorters into bed with him!

He will stay up later than normal, playing with all the pieces in the dark. He will cry as he gradually loses said pieces in his bed and call quite insistently for "Mommy!!! HEP!!!!!"

This will repeat throughout the night, as he rolls over in his sleep and encounters the scattered plastic shapes all over his person.

Exhibits: midnight, 2:30am, and 5am.

Yours sternly, very tired Mommy.



See this? No-no-no-no-no!!!!!! (in James' bed)