Wednesday 2:34am.
I am Sleeping soundly.
I am startled when the silence of the night is shattered by a small voice.
"Mommy? Mommy wake up. Is it Christmas yet?"
So starts my day.
This sweet boy, the one that generally sleeps well is awake with no sign of going back to sleep.
It is pretty widely known that many children on the autism spectrum have difficulty with sleep. Such has been our experience with Jerald.
(and Parker, though he does not have an autism spectrum diagnosis)However, Aaron has been in the small group where a good nights sleep is appreciated.
Most nights his sleep schedule is like clockwork. He's ready for bed at 8pm, though it's often closer to 9 before he's tucked in and he's out in minutes. Sometimes,in mere seconds with the light still on and brothers wrestling around we can hear his soft snoring. He sleeps soundly all night and promptly wakes and starts his day between 6 and 7am.
On occasion there is a disruption, a shift in this schedule.
Those nights when Autism, anxiety, OCD and sensory issues shout from the rooftop that they are alive and well in our house. Together, they walk the halls attempting to disrupt the entire balance of our home.
Those nights when I must play detective to decipher what's going on.
Surely, a shift like this doesn't just happen. There is always a root.
Something bubbling under the surface, exacerbating issues that are always there, but often more subtle.
Sometimes the root really is anxiety.
Something has changed
or
Something is coming
or
a bad dream triggers an onslaught of obsession that he just cannot reign in and manage.
Sometimes its an indication that an illness is coming.
Sometimes for whatever reason he just needs more of mommy and less of sleep.
Rarely is he able to understand this himself, let alone explain it to me.
That leaves me standing in my pajamas, in the dark, hunting through the closet for my detective hat.
I have never wanted to be a detective.
I'm not given a choice.
As he chatters for hours about Christmas, asking at least a dozen times "is it Christmas yet?", I suspect that's not why he's really awake. At least, that's not all of it.
He snuggles, but not too close because "it feels weird."
He shares my pillow until he decides my breath is "hot and smelly" so he flips himself around.
Now, his feet touch my pillow. He apologizes for getting my pillow germy.
I say, just be careful because I don't want to get kicked in the nose.
He says "getting kicked in the nose is not as bad as getting germs on your pillow."
Another piece of my heart chips off.
A seven year old shouldn't be so concerned about germs. Especially in the wee hours of the morning.
He tosses out comfortable and scripted words:
"He flew into my food, fancy that" (from a Cat in the Hat episode)
"or purple like a, like a, like some weird guy" (from Gnomeo and Juliet)
Half a dozen others that I'm fairly sure are all from Backyardigans episodes.
The clock ticks.
Time fades.
Shades of night turn to the light of day.
Eventually, I give up and toss the detective hat. In the end, it doesn't matter why he's awake as much as it matters that I listen to him, snuggle with him and prepare to help him navigate the day.
See, not only is our night completely disrupted, but now our day will be as well.
Tired, schedule disrupted, anxiety on high are all ingredients for a rough day.
I must shift gears.
No longer am I a detective deciphering what's going on. No, now I must grab my rescue gear. I must be prepared to control damage, to watch for pitfalls in the day and avoid things that could lead us down the rabbit trail of meltdowns and more anxiety. He's on high alert and so I too must be on high alert.
It's a long day. It has rough patches. Even a couple of meltdowns, but he's able to recover fairly quickly from all but one of them.
In the end, we are able to make it to the Christmas caroling and tree lighting event we'd been planning on. The day was not as disastrous as I anticipated and I'm thankful.
We arrive home, he doesn't even change into pajamas. He collapses into his bed- clothes on, shoes on, bedroom light on and he's out-it's 9pm exactly.
Thursday 2:28am
(even his sleep disruption schedule is like clockwork apparently)I am Sleeping soundly.
I am startled when the silence of the night is shattered by a small voice.
"Mommy? Mommy wake up. I think maybe that hornet stinger is still in my ear."
I'm confused and ask him to repeat 2 or 3 more times before I'm awake enough to process what he's saying.
This summer, he experienced a hornet sting on his earlobe, that must be what he's talking about. I tell him that happened a long time ago and that he must have just had a bad dream. He finds a spot to snuggle in close, but sleep never comes.
It's a repeat of the night before. Except this time the anxiety is worse, the obsessions are more consuming and the tears are flowing much more freely.
He cannot let go of the idea that the hornet stinger must still be in his ear. I stumble into the bathroom and try to assure him there is no stinger as my eyes adjust to the light. I scratch the area he's pointing to and tell him if it was there, it's gone now. We go to the kitchen for a drink and I rub ice on his ear for a few minutes.
As night fades to morning, we will have repeated the above scenario multiple times. At some point I fall asleep and he wakes me to say "I'm going back to my own bed because you are touching me and I don't want to be touched."
Yet, he really needs his mommy so he comes back every 5-10 mins to ask about the stinger, to tell me he loves me or just to say "are you awake?"
At 6am he heads to the bathroom. A few minutes later he screams for me and I'm not sure my feet even hit the floor before I'm there next to him. He feels like he's going to vomit. Anxiety starts to rise even higher, if that's even possible, because he really really really dislikes vomiting. I try to calm him down. I know that he will vomit if for no other reason than the anxiety if I can't talk him down from the ledge.
Eventually I get him back to my bed with a bucket "just in case" and we start the stinger in my ear scenario all over again.
I've asked him several times if his ear hurts and he says no. He claims it doesn't hurt inside and the outside just feels weird from the stinger. As the morning wears on, he tells me that his ear feels weird and that he's hearing weirdish things. He's exhausted, he's crying and now he's decided since I can't fix it maybe Dr. W our pediatrician can "use his clapper thingy just to see if I can hear".
What's been bubbling under the surface has now spilled over. He's not feeling well and that's causing everything else to ramp up.
I call to see if we can get an appointment.
It's an awkward conversation.
The nurse asks why he needs to be seen. I say, "I'm not really sure. He's been up all night worried about a hornet stinger in his ear and I'm guessing maybe he actually has an ear infection. I really don't know."
I can see her shrug through the phone line, but in the end we have an appointment in a couple of hours. Hopeful that either he does have an infection we can treat or that Dr. W will have the magic words to assure him that all is fine and we can stop worrying about the hornet sting from months ago.
So it goes, this life of mine, this balancing act of wearing so many hats...mom, teacher, detective, nurse and so many others.
In our family Autism is often invisible, but it's never gone.
It roams the halls at night and it jumps on the scale all day trying to upset the balance of our life. Sometimes it succeeds and life is hard. Always we get through it and keep going. Autism might disrupt, but it doesn't destroy. It digs some pretty big potholes in the road, but there's always a way to stay on the road. Perspective is everything, even in the midst of the difficulty, there are always gifts and joy to be found.
***Update*** Aaron does in fact have an ear infection. He slept well last night, mostly due to fever and exhaustion. This morning he says his ear still feels "weirdish the same like yesterday", but his fever is gone.
