I had a horrible horrible dream last night. The kind that wakes you up with a start in a cold sweat – the bolt upright in bed kind of dream that you see in the movies. The kind where you’re afraid to go back to sleep, because you fear the dream will start back up again where it left off.
I won’t go into the details, but it was in the genre of “every parent’s worst nightmare” kind of dream. I laid there in bed for a while wide awake, mostly because I was afraid to go back to sleep.
For as long as I can remember, I’ve always had anxiety dreams. My college roommate’s dreams were these grand “good versus evil” extravaganzas, where the players dressed in medieval garb and fought with swords and serpents. In my dreams, the players are familiar faces, acting out some twisted scene from my subconscious. I’m a firm believer that my dreams have some sort of message to me, something I’m supposed to do or understand. It was clear this particular dream was sending me this message:
It could be so much harder
Let me be clear, I am in no way minimizing how hard life is with a kid on the autism spectrum. I know that every day, and even every moment, is a struggle sometimes with our kids. I know that many of us live on the edge, waiting for that moment when our kids will say their own name or give us some recognition that they understand the world around them. I know the fear and worry that so many of us have about the future for our children, wondering if they’ll be able to grow up and survive in the world without us someday. But this dream reminded me of the alternative – the horror of making life and death choices about our kids and the unspeakable pain of outliving them. I know there are parents out there that suffer with this everyday – holding their own lives together while they care for their children who can’t walk, or eat, or breathe on their own.
So there in bed I laid with all these thoughts swirling around my head. I spend hours of my day in constant active autism mode. From the moment we wake up (and even during the night) I’m managing, planning, scheduling, observing, re-planning, and organizing our lives around Howie’s sensory needs. Activities are planned and timed with these needs in mind in order to minimize tantrums and outbursts. We avoid certain foods and smells so we don’t set him off. Our house is full of timers and schedules and body socks and social skills scripts so we can always bring him back to the moment when he’s overloaded.
While these are all things necessary to help him cope and understand his world, there are days when I feel like it’s all we do. When Howie’s running through the house, jumping over pillows with Lewis chasing him, in my head I say “he’s getting his energy out because his engine is running high”. When Howie asks to be pushed higher and higher on the swing, in my head I say “he’s getting the sensory input he needs”. When he’s sitting at a table with his friends having a snack and telling jokes, in my head I say “he’s developing good social speech skills”.
Why can’t I just look at these situations and in my head say “Look at my Howie. He’s having fun being a kid”? Is it because I know too much now? Have a become so mired in all-things-autism that I can’t look at a situation without identifying what IEP goal is being met at that time?
If my dream was showing me anything, it was that I need to be more appreciative of the moments that I have with him and all my boys. I need to stop always focusing on how Howie’s interactions with us all meet his sensory needs, and just let us…play. I need to laugh along with Howie and Lewis as they run and crash into the pillows with reckless abandon. I need to push Howie as high as I can on the swings because he wants me too, and because it’s fun. I need to sit down at the table with Howie and his friends and tell jokes that only make sense to four year olds, because that’s what four year olds do.
My dream showed me that the alternative is unimaginable to me.
I finally calmed myself down and fell back to sleep around 3am, about 30 minutes before Howie tried to climb into my bed as he has done on so many nights. Usually, I take him back to his bed and lay there with him until he falls back to sleep, and then I return to mine. This time, I pulled him into bed with us. Tim told me this morning that when he left for work at 5am, I was snuggled up tight against Howie with my arms around him.
Doesn’t surprise me. My dream told me to savor any and every minute I have with my kids, no matter how hard it is in that moment. Because it could always be unthinkably and unimaginably harder.
“These dreams go on when I close my eyes.
Every second of the night, I live another life.
These dreams that sleep when it’s cold outside,
Every moment I’m awake, the further I’m away.” – These Dreams by Heart