When Jennifer wrote in her last blog about Caden never getting to take a break from autism, that got me thinking. She’s right, as parents of a child with autism, we have the chance to take a mental (or physical) timeout from the struggles of autism knowing that the other will be there to shoulder the load. Caden doesn’t have that opportunity. As Jenn said, even sleep is a challenge for him.
Since Caden was a baby, getting him to sleep and stay asleep has been a nightly battle, and we have brought out every weapon in the arsenal over the years. For the first 6 months or so, we found that the tag-team approach worked the best. One of us would start out holding him in the recliner until inevitably one body part or another would go to sleep, spasm, ache, or otherwise give up, and then reinforcements would have to be called in, and the other one of us would take over.
After about 6 months, we had to start the divide and conquer method with getting our kids through the nightly medicines and bedtime rituals, and so it came to be that Jenn would take Ryley and I would take Caden. Many nights, from age 1 to about 3, I would wind up wrapping Caden in a blanket, putting him in the van, and driving him around the country roads for anywhere between 15 minutes and 2.5 hours. He would eventually fall asleep, and I would then have to figure out how to get him out of the van, unbundled, and into his crib without waking him up again. More times than I care to remember, his eyes popped open just as I would close his bedroom door, and the process would start all over again.
The last 2 years have had us try various lotions and potions, big boy beds, blankies, lights on, lights out, until we finally settled ourselves on the nightly ritual of Caden and I making a temporary bed of blankets on the family room floor, reading a book, having a night-night snack, watching part of a show on how to build something or other, and then eventually him drifting off to sleep. Sometimes that process takes 15 minutes, sometimes two hours, but it works for us and it is our routine now.
And it’s at this point in the evening that I start to wonder, does he get to be “just” a boy now? Does sleep, that thing that we have struggled to get him to and keep him in for 5 years now, loosen any of the hold that autism has on his mental and physical being? I know, know, of course he always has autism, but is it wrong to hope that for those couple of hours that he is deeply asleep that autism gives him a break? Is it wrong to hope that when he dreams, he gets the chance to just be a kid?
Before I get up from the family room floor every night after I am sure he is sound asleep, I lean over (carefully so not to crush Elf who is always sleeping next to him), kiss him on the forehead, and say “I love you.” That kiss is my wish, my hope, that he is with his friends laughing and playing and running, and that he doesn’t have a care in the world.