The 3 AM Yoga Mat Incident

“I had it good.

“My son was sleeping through the night on a regular basis. That meant that I was getting a full night’s sleep every night for the first time since I became a dad. It felt wonderful to wake up feeling refreshed every morning.

"And then we changed Kai’s medication. He has not slept through the night since…”

This week’s column in the Patch describes the strange things that can happen in the middle of the night when your son cannot sleep.

Click here to read the whole story.

Return of Sleepless Nights

With our fresh start with a new psychiatrist, my son has been off meds for a week now. He seems mostly happy these days, and is his old jovial self more often than not.

So we are glad about that.

Unfortunately, that is not the only thing that has changed back to how things were before we started the drugs.

Kai has returned to waking up in the middle of the night.

It is apparent now that the Risperidone and Seraquel had helped immensely with his sleep. Because without the drugs, for the past week, Kai wakes up in the middle of the night, gets out of bed, and knocks on our door.

The other night, he came by at about midnight. I walked him back to his bed and tucked him in. I’ve resumed sleeping in the extra bed in his room as he would keep coming out of bed otherwise. Sometimes he falls asleep quickly after I lie down. But on this night he did not.

“Dad, my lips are sore.”

I went over, put balm on his lips, and then returned to the spare bed.

“Dad, my leg hurts.”

I had no idea what the problem was. But after a minute or so of rubbing his leg, he seemed okay.

“Dad, can you scratch my back?”

This went on for about an hour. He was wide-awake. He wanted one thing after another.

Finally, at about 1 AM, I thought of giving him some melatonin. And after he ate it, he quieted down. He must have fallen asleep. Finally!

But at 4 AM, he was awake again.

“Dad, can I wake up now?”

Grumble, grumble. No, Kai, it’s too early.

“Dad, can I have some water?”

I got him a cup of water.

“Dad, I can’t sleep.”

Yes, Kai, I realize that. Close your eyes and try to stay quiet.

I was really irritated. But I knew he wasn’t doing this to irritate me. He just could not sleep. And that means he was miserable, too.

Over the past few months, I had gotten used to getting a full night’s sleep. So this change is really hard. And I’m sure it’s as hard for my son as it is for me.

At 6:30 AM, I finally told Kai that he could get out of bed. He started to cry. I asked him what was wrong but he did not answer.

The new doctor will soon recommend her approach for medication. Hopefully, it will include something to address Kai’s sleep issue. He * yawn * and I need it.

Daylight Saving Time – Grrrr

After four years of my son waking up in the middle of the night on a regular basis, Kai finally started sleeping through the night more often in January. We initially wondered how long this new pattern would last, and was thrilled that it actually became even more consistent in February and into early March.

Then, this weekend, we had to change the clocks for Daylight Saving Time.

At 3:15 on Monday morning, I heard the familiar knocking on our bedroom door. Uh oh. My son was awake.

Last night, he knocked at 2:00 AM. He was very chatty.

Here we go again.

We are hoping that his awakening in the middle of the night is only a matter of adjusting to the time change. But, with Kai, who knows?

Why did we have to create a disruption in his sleep pattern just when we finally had things going good?

They say that more daylight helps to brighten people’s mood. Maybe that will turn out to be so. But, right now, I am just grouchier.

Daylight? Bah humbug. I’d rather have sleep instead.

The Streak Ends

Joe DiMaggio’s 56-game hitting streak;

Brett Favre starting 297 games in a row;

Cal Ripken playing in 2,632 consecutive games;

My son sleeping through the night for eight straight nights;

These are the greatest streaks in history.

Okay, so that last one doesn’t quite match up to the other feats. But, in our household, this streak was a big deal. It was Kai’s longest stretch of sleeping through the night in nearly four years.

Unfortunately, like the other momentous streaks, this one came to an end. At 2AM this morning, I heard the familiar knocking on our bedroom door. When I went out to see him, Kai began talking to himself in a very chipper voice. I was not in such good humor.

Still, it was a great run; more than a week of good sleep. For me, I mean.

What is frustrating, though, is that we can’t figure out why he slept so well. Being the analytical type who loves to dig into data about barometric pressure and compression shirts, it drives me crazy that we cannot come up with a good correlation for why Kai slept for eight nights, and now why he woke up last night.

Our son’s DAN (Defeat Autism Now!) doctor has been advising us on supplements to address Kai’s sleep issues for a long time now. Did the cumulative effects make a difference?

We started seeing an Applied Kinesiologist three months ago. Did his work kick in this past week?

Perhaps it was just the cold weather.

Not only did Kai sleep through the night, but, on many mornings, it took a lot of effort to wake him up. This kid, who for years was constantly waking me up much earlier than I wanted to get up, often told me, “Daddy, I want to sleep more.” Sorry, son, you have to get up now or you’ll be late for school.

The other day, as I pulled the blanket off his bed, he said, “Dad, you’re annoying me.” I was surprised how well he expressed himself. Hah, what a positively normal thing to say.

I would gladly take the tradeoff of struggling to get him to wake up versus having him awaken in the middle of the night.

Joe DiMaggio hit in 16 straight games right after his 56-game streak was broken. Let’s see if Kai can start another streak of sleeping through the night.

He Slept? He Slept!

My son slept through the night last night.  That makes three nights in a row. 

For most kids, that is no big deal.  But, as I wrote before, Kai frequently wakes up in the middle of the night.  Tests have shown that he has very high glutamate levels which can result in disruptive sleep and bring on high levels of anxiety.  Over the past three years, it has been rare for him to sleep through the night more than two or three times a month.

On those occasions when he does sleep, the next morning my wife will ask me if he really did sleep through the night.  Since it is such a rare occurrence, we can hardly believe it. 

This current three-night streak is the most consecutive nights Kai has slept since mid-October when he had a stretch where he slept through the night for five nights in a row.  That was his best streak since he was three years old.  The October streak occurred just after we had started seeing an Applied Kinesiologist to work with Kai, so we had hopes that his sleeping issues were finally solved.  But, soon after that, his sleep patterns reverted back and he’s had only about one good night of sleep a week since then. 

We’re not sure what might be causing this latest good period of sleep.  We recently stopped giving him a supplement which relieved adrenal fatigue. On yesterday’s visit with Kai’s DAN doctor, he reported that Kai’s cortisol levels have rebounded a bit so additional adrenal support may have stimulated his adrenaline too much.  So, the supplement could have been contributing to his sleep issues.

We shall see if the effects last.  In the past we have had other periods where his sleep improved for a few nights, only to return to sleeplessness again.

But, for now, I’m not going to lose sleep over how long this may last. 

Anxiety Over Sleep Issues

We have been doing biomedical treatment with our son since shortly after he was diagnosed with autism when he was two years old. Kai has made a lot of progress in many areas, but sleep remains a persistent issue. His two-night streak of sleeping through the night when we went camping this past weekend was an extremely rare occurrence. Now that we’re home, he has resumed waking up in the middle of the night.

Many kids with autism have sleeping issues. Kai usually wakes up some time between midnight and 3AM. He will come knocking on our door and I’ll go out to see him and put him back to bed. Sometimes he will just say, “good night” and lay down in his bed. Other times, he will start talking to me about all sorts of different topics including planets. And, then there are times when he seems really anxious, and he may tell me he had a bad dream and can’t sleep. When he is more talkative or when he says he can’t sleep, it is almost certain that he will come knocking on our door again. On those nights, I often end up sleeping in the extra bed in his bedroom.

Before, I never wanted to stay in his room as I thought that it was just an emotional over-dependency on his part to want to see me or my wife in the middle of the night. I thought we would just be coddling him if we stayed in his room. A tough love approach would teach him to be more independent.

But, tests done by our DAN (Defeat Autism Now!) doctor show that Kai’s neurotransmitters are not functioning correctly, and his glutamate levels are particularly high. Glutamate is the most excitatory neurotransmitter in the nervous system. Abnormally high amounts of glutamate can result in disruptive sleep and bring on high levels of anxiety. As Kai is fearful of so many things, it is likely that his glutamate level is at least partially responsible.

Knowing that his anxiety and sleep problems are the result of a physical condition rather than simply an emotional issue, I’ve softened my stance about taking a tough love approach. I’ve tried to place myself in his shoes. How would it feel to wake up in the middle of the night, feel very anxious about something, and not be able to fall back to sleep?

Is it bad to soothe your six year old child in the middle of the night? Would it be better to take a tough love approach and leave him alone, even if he is unable to fall back asleep?

When I stay in his room, he usually becomes calm, stays quiet, and eventually falls back asleep. But, at some point, he may wake up again after I have fallen back asleep.

Three nights ago, some time after I fell asleep in his room, he woke me up. “Dad, stop snoring!” Apparently, I was sleeping too noisily for him.

Two nights ago, some time after I fell asleep in his room, he woke me up. “Dad?” “Huh?” “You can go back to sleep.” Apparently, I was sleeping quietly and he was just checking to make sure that I was still in the room.

Then, earlier this morning, he again woke me up. “Dad?” “Huh?” “You can sleep for 15 more minutes.” “Uh, thanks, Kai.”

And then, 15 minutes later, the human alarm clock went off. “Time to wake up, Daddy!” “Grrrumph.”

You know, on second thought, maybe that tough love approach is not so bad.

* * * * *
This post was submitted for S-O-S Best of the Best, Edition 8: Sleep Issues & Bedtime and Kids with Special Needs, which will be published on July 15th, 2011. You find more information and read other submissions here.

The Soothing Roar of the Interstate?

On our recent camping trip, our son slept better than he usually does at home.  Unfortunately, the same did not apply to me and my wife.

Yesterday, I mentioned the huge crowds at the Burgoo Festival as we attempted to drive through small town Utica to get to Starved Rock State Park.  Well, I neglected to mention that there were a lot of people at the State Park as well.

The main parking lot there is quite vast, but, even so, it was overflowing with cars parked in all sorts of places that were not intended for parking.  We did the loop around the lot hoping to get lucky and be in the right spot when someone else was pulling out.  After sitting in traffic for so long just to get to the park, we were in no mood to do the Parking Lot 500.  Fortunately, we found victory lane after only a few laps as a minivan pulled out at just the right time.

With all those people there, it was no surprise that the campground at the State Park was completely booked.  But, I called a private campground a few miles away and secured the last campsite.  I had some trepidation about staying in a private campground, but it turned out to be quite nice.  It had lots of large trees and was arguably more picturesque than the campground in the State Park itself.  The only potential issue was that it was kind of close to the interstate highway, about a mile away.  But, when we arrived, the highway sounds did not bother us at all. 

Or, so we thought.

Kai fell asleep soon after we turned the lights off in our tent at 9:00 PM, and did not awake again until 6:00AM.  For a kid who gets up in the middle of the night ninety-nine days out of a hundred, this was highly unusual.  I don’t know if it was the cool night air, having less anxiety because he was sleeping in the same tent as Mom and Dad, or because he was tired out from all the hiking, but, for whatever reason, he slept great.  He slept well again the second night, so it wasn’t a fluke. 

My wife and I, though, had more of a restless sleep.  The sounds from the highway that we did not notice at all during the day became annoyingly loud once all else was quiet and we wanted to sleep.  It was a distant, but persistent roar of trucks and cars as they sped past. 

As I was lying awake, I wondered if that is how all sounds are for my son.  I’ve heard that children with autism can be hypersensitive to various stimuli, including noises.  It can be hard for them to maintain focus and attention because they can be distracted by sounds that most people do not notice.  For Kai, I imagine that it would be like hearing these highway sounds all day long in his head while he was trying to listen to other things.

Once we returned home, my wife and I slept more soundly in our quiet home.  Our son, on the other hand, resumed waking up in the middle of the night.  Maybe I need to pitch a tent in our backyard for him.  Perhaps, I need to take him for more hikes before dinner.  Or, maybe he needs more “highway sounds” at night to match those in his head all day.