Our journey in the Autism Spectrum

Sleepless in St. Louis

Having a child that does not require much sleep and gets up frequently throughout the night can  be very tiring, literally speaking! My son is five years old and for five years we have had countless nights with little to no sleep.  We know well the path of walking through our days weary, bleary-eyed, and in a fog. We have spent many days beyond exhausted! 

We don’t usually know when it is going to be one of those sleepless nights as Henry goes to bed usually quite well now. Though getting him to bed fairly easily was a long time in coming and quite a spectacle! (And probably warrants a blog post all on its own!) No, Henry and Lucy went to bed as usual last night with what we would consider some typical 5 and 4-year-old antics  but they did settle down and seemed to fall asleep soon after we tucked them in.

When sleeplessness occurs, Grant generally gets the “first” shift  and we always hope for that being the “only” shift. Let me add in here that Grant also does not require a lot of sleep and can fall back asleep in about 2 seconds. I, on the other hand, require much more sleep and it takes me much longer, sometimes hours, to be able to get back to sleep. So over these years Grant has taken on most of the burden of the night shift.  But even he has his limits.

Here is how these sleepless nights go with last night being no exception: Henry wakes up about 3 hours after he has fallen asleep calling for Daddy. Grant will go in and check to see if Henry needs to use the bathroom, tuck him back in bed and sometimes lay down with him. Sometimes for a few minutes, sometimes for more than an hour. Did I mention that Grant can fall asleep in about 2 seconds? Grant will finally crawl back into our bed at some point. Henry will lay in his bed alone for a short bit but if he doesn’t fall asleep he will be back up calling for one of us. On occasion I do get up to take the first shift but most often Grant tries to let me sleep as much as he can until he just can’t take anymore and then I get called in.  

Now, here is the fun part,  repeat the above actions 3-4 times a night. Yes, you read correctly: three to four times a night!

Sometimes Henry will doze off in between these times, but generally it seems that he is up for the duration, eyes wide open, staring at the ceiling, fiddling with a toy or book or his bear. 

For a long time we just could not keep him in bed on these nights or a screaming meltdown would ensue. No one wants that at any time of day but I for one, REALLY do not care for this at 2AM! And 3:30AM…and so forth. Most times Henry would just want to wander/pace the house or go down to the family room to watch TV. To avoid meltdowns, one of us, usually Grant, would go with him and try to doze on the couch.

Now for added fun imagine doing this not only 3-4 times a night but SEVERAL times a week! Yep! From about the time he was a year old until almost 3 yrs, this was a regular routine most nights of the week. And as bonus when Henry was about 17 months old, we added his newborn sister to the night shift. Grant and I have lost about 3 years of our lives!

Over the last 2 years these episodes have finally decreased to one or two nights every few months or so. Usually now Henry will go back to his bed. Sometimes he is able to get up, go to the bathroom and back to bed and asleep on his own!

What is amazing about these sleepless nights is that most often the next morning Henry won’t really “sleep in”. He gets up about the same time he does usually and is good to go for the day with just maybe a few hours of sleep! I can count exactly 3 times in the last year when after pulling an all-nighter that Henry did actually fall asleep later the next day.

But not today. Have I mentioned how tired I am today?

Grant and I have tried many different things over the years to help get Henry to sleep and STAY asleep. Some helpful, some not so much. Last year I went to hear a nurse practitioner specializing in sleep disorders from a local sleep clinic give a talk about young children and sleep issues. I enjoyed her talk and felt really good that Grant and I had tried a lot of the tactics she recommended. Some worked. Some, again, not so much. At the end of her talk she opened the floor up for questions. I spoke up and asked if she had any good suggestions or books or resources for dealing with sleep issues for a child on the Autism Spectrum and with ADHD.

After a brief pause she said, “None that I like.”

Another pause and then she added, “If it is any consolation, I have found that many children on the Spectrum do seem to grow out of their sleep issues.”

I thought, “Really, Lady? That’s it? No. No, I don’t find any consolation in the hope that he hopefully will out grow this! I am TIRED! Mentally, physically, emotionally. I can barely see the nite-lite on in the kids’ room at 2AM because I am so exhausted let alone some possible light at the end of what seems an endless tunnel!”

 We have continued to stumble forward since then and Henry really does seem to be growing out of this sleeplessness. Every few months he will be up again, and again, and again….and we are tired again. Tired still.

Perhaps one day we will look back at these times, those many sleepless nights  and “lost” days and laugh. But quite frankly, I think I would rather take a nap!


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