To Sleep or Not to Sleep; That is the Question

"Twilight"

Oh how I love my sleep and for me that is the irony of being the Doodle’s mom.

Seriously, I have not had a good night sleep since before the Doodle was born. The last trimester of pregnancy I was so uncomfortable and had to pee so much that solid, uninterrupted sleep was not in my forecast. Then he was born. And he was never a good sleeper. He would wake himself up all night long with these weird-falling-bad-dreams and startle himself awake. I couldn’t wait for him to grow into becoming a good sleeper. That never happened. Just to get a few hours of sleep I allowed him to sleep with us. Because God forbid I moved him or even sneezed, he would wake up and be awake for hours, crying.

His entire infant life he would hold his breath and stop breathing while he slept, for up to 25 seconds. I would shake him to wake him up so that he would start breathing again…then he would gasp for air; which most of the time woke him up. I found out later after several doctors’ appointments that he had severe sleep apnea at just age 2. Part of what they thought caused the sleep apnea were his enlarged tonsils and adenoids. This made sense because he was constantly sick with upper respiratory issues and colds. So again, sleep apnea was interfering with his sleep (and ours).

Then at about age 2 1/2 the seizures started. The big, scary grand mal seizures—if you’ve never seen one it’s about the worst thing you could ever watch someone you love experience. It’s the most awful and helpless feeling I’ve ever had in my life. So the doctors thought maybe the sleep apnea and lack of oxygen to the brain could be a contributing factor to the Doodle’s seizures—so we elected to have his tonsils and adenoids removed immediately; hoping that would solve everything. Nope. While having them removed has helped with him not getting sick so much, the seizures kept on coming. And the sleeping never really got much better either. He’s still a light sleeper who wakes at least 5 times a night.

So to monitor the Doodle’s many seizures and try to get him the best sleep possible, I would sleep with him and cuddle beside him. Which, besides being a light sleeper, he now cannot sleep on his own. He’s now become so dependent on someone sleeping next to him—he can sense when he is left alone in the bed—even if it is just in the middle of the night for me to get up to go pee for 3 minutes.

We’ve done everything we can to accommodate his sleep issues. We even bought a King bed because he’s pretty big and likes to crowd me to the edge. Yes, he’s been known to push me out of bed a few times. Lately, he’s been having more and of the scream out, stiffen up seizures. It might look like a bad dream but his eyes roll back in his head and he usually stiffens his legs or arms. These last only 3-10 seconds but leave him a little disoriented (and me too) and then he usually goes right back to sleep.

Last night he had around 10 of these episodes. We really need to get him into Stanford to do another sleep study but that will be brutal on him. Immobile and stuck in a bed for 48-72 hours. The thought of it gives me a panic attack.

Laying there last night, listening to my hair grow because I could not get back to sleep, I couldn’t help but remember how sleep used to be one of my favorite things to do. I cherished my sleep and sleeping in. I could easily sleep until noon. The last time I had really good, uninterrupted R.E.M. sleep was in 2007 when I underwent hours of sedation dentistry. 

I had just returned from a 3 night trip to San Diego in a plush 4 star hotel with a King bed all to myself…crisp white sheets, a down comforter and black out curtains and do you think I was able to get any sleep? Nope. Now, I cannot sleep without that little back-kicking-sweaty-head assaulting me all night long. I actually missed his Doritos breath blowing my hair back and his one leg draped over me. That’s my ironic sleep story and I’m sticking to it.

The Witching Hour

It's 11:30, do you know where your little witch is?

One of the little gifts of autism that keeps on giving for us is the insomnia and bad sleep patterns.

We've been through it all in the middle of the night:  sleep apnea, night terrors, infantile spasms, teeth-grinding, bed wetting, seizures. 

Sleep is no longer restful for me; not when you wrestle a 48 pound back-kicker all night to give you an inch of your pillow back.

It's hard to get this little guy in bed and asleep by 11:00pm.

The 7:30pm and 8:00pm catnaps don't help either.

If he goes to bed, say 9:00pm, he's up at 11:00pm and it's even worse than keeping him up late.

"He walked into the party, like he was walking on to a yacht.

His (witch) hat strategically dipped below one eye, his jammies were apricot.

He's so vain.  He probably thinks this post is about him, he's so vain."

Keeping Him Awake

The new thing is keeping the Doodle Bug awake for as long as possible at night. No more of this 8:00 or 9:00 pm bedtime...
and no more late afternoon naps.

It is our mission to wake him up and keep him going like the energizer bunny until at least 10:00 or 11:00. If we don't, and he happens to fall asleep for one of his power naps then we're in for a world of hurt around the witching hour.

The Doodle has never been a good sleeper. Ever. I can honestly say since he has been born I have not had a good night's sleep. Not the kind of deep REM sleep where you wake up and forget where you are. I feel like I'm sleeping with one eye open; whether it be the fear of him having a seizure or falling out of bed or peeing the bed and having to get up in the middle of the night, sleep does not come easy around here. And, sleeping in is also not an option. Even if the Doodle is sleeping in the morning, we have to wake him up to give him his anti-seizure medication by a certain time. Anti-seizure medicine is something you need to really regulate as far as being consistent.

If that's not bad enough, he's a really light sleeper too. He wakes up with the sound of a cough or a subtle creak of the bed. If the phone rings or the alarm on a door chimes, forget about it...we have to start the whole going to sleep process over and pray for a miracle.

One way I used to be able to relax and unwind after a busy day of working and being a mom would be to watch one of my grown up shows after the kids went to sleep...the Doodle, now a control freak of sorts, only tolerates certain shows on the television. His shows. So I'm only getting to watch things like Yo Gabba Gabba, Dora the Explorer and the Upside Down Show at night. No more watching things like American Idol, Grey's Anatomy, The Good Wife, Celebrity Rehab and all of my favorite trash t.v.

Oh the sacrifices we make as parents...

Definite Seizure Activity

This is what a Doodle Bug looks like on anti-seizure medicine bouncing off the walls--around midnight because the anti-seizure medication which is a sedative has the opposite effect on our already ADHD bad sleeper. Our poor drugged out baby.

One thing our entire family shares is dark circles under our eyes from lack of sleep.

The Doodle has never been a good sleeper since the day he was born. He would never sleep more than an hour or so and do that startle jerk thing you do when you feel like you're falling when you first start to fall asleep...well, he would do that all night long. Naps were 20 minutes. We used to call him the cat napper. Looking back and after talking with Doctors, we have determined that those were some kind of a seizure.

Flash forward (or is it backward?) to last January. The Doodle's seizures began while he was sleeping. Always while he was sleeping, these were the grand mals--the big ass kicking ones and they always happened between 4:00 and 8:00 am.

Meanwhile, still a bad sleeper. Still wakes up startled and scared all night long. But now that I am watching and looking for seizure activity I can tell and it was confirmed by our nurse that these weird wake up screams in the middle of night ARE definitely a form of a seizure. He startles himself and jumps out of skin, then he cries for a second or yells, his body stiffens and his eyes are wide open but his eyes are kind of rolled back in his head and you can't wake him or get his attention. His breathing pattern also quickens. These things only happen when he's sleeping and I can't detect what kind of seizure they are or how long they last unless we go back to Stanford for another sleep study EEG and actually record them.

When the Doodle had the last sleep study EEG in May, it was determined that he had seizures all night and all day long. I was supposed to hit a button when I saw what looked to be a seizure. There were a ton of seizures that I couldn't tell were seizures and I never hit the button on those.

So scary.

Because of the seizures (and previous sleep apnea) the Doodle sleeps with us. And since he refuses to go to sleep until after 10 or 11 pm, because he's all jacked up on antiseizure medicine, no one in our room is getting any sleep. I've been groomed now to sleep with one eye open; watching and waiting. I've only had 4 nights of sleep completely Doodle-free. Oh what I wouldn't give for one night in a hotel in a Tylenol PM induced sleep coma; where I could sleep the entire night without waking or worry. Real REM sleep. Sigh.

Thank goodness only one of us operates heavy equipment, at least Jim can sleep through most of the Doodle's outbursts.