Johnny does not have school today, so he is chillaxin! As always, no matter the day, the season, when he went to bed, he is up by 6, at the latest! If he happens to sleep till say…6:30, he accuses us of letting him ” over sleep.” No alarm clock is required for this 6 a.m. revelee, because Johnny was born with an internal clock that the makers of Rolex and TAG Hauer would covet. If nothing, Johnny is prompt and accurate. His motto, “Time is of the Essence.” Or as he tells us, “The Early Bat gets the Worm.”
I should not be complaining about the 6 a.m. wake up call as early on in our trip, sleep deprivation was a major pothole and when I say MAJOR, I am not exaggerating…at all. There was one of these potholes about every half-mile and no one seemed to be able to find the correct material to fill the hole so that maybe it would only be a bump in the road.
Anytime I had the opportunity to speak with another Autism parent the first thing I would ask is, “Does your child sleep?” But I said it in more of a pleading tone, hoping that parent would know some secret that would unlock the mystery of my non-sleeping child. He literally would have dark circles around his eyes. I would tell the doctors: “Yes, he has a regular bedtime.” “Yes, he has a bedtime routine.” “Yes, he falls asleep but does not STAY asleep. As with most issues encountered on this autism road trip, there were no answers except to simply “adapt.” Easier said, than done.
Many a day I would call his teacher to let her know that I had no idea how long Johnny had been awake. At times “lack of sleep” would win and I would not even hear him in the morning. This would then start my morning off with a racing heart realizing I had no idea what he had been doing. Johnny was a master escape artist so I would only begin to breathe once I found him contentedly in front of the t.v. or cut him off at the pass as he ran his 100th lap around the living room, humming along to soothe himself. Each time I walked in on this scenario he would come to a screeching halt, take one look with a face and voice void of emotion and flatly ask, “what?” Having too many questions, a 5-year-old could never answer, I simply said, “nothing” and would then go contact his teacher.
Imagine a non-sleeping child, two brothers, and 2 tired parents trying to take any type of vacation. That’s right, you have a family of 5 sleep deprived individuals wondering why “every other family” can do something as simple as go away for a few days, but for us, a vacation was more like the road trip from hell. The pot holes were too many and we began to lose the desire to even fill them.
The stress began to grow on our family but as always, “comforted” by others always reminding me how “LUCKY” I was that he seemed to be “high-functioning.” Funny, and sadly, I did not feel, “lucky” but raised a non-whiner, quitter or complainer, I thought…”well, guess I am, so I better figure this out, because clearly no one is going to help.” Why would I need help? I didn’t even think I could ask, after all, wasn’t that for parents who weren’t as “lucky”.
By this time Johnny had an “educational only” diagnosis of autism but not a medical one. The medical one was a bit trickier because we were “so lucky” that he was “high-functioning”. And as I said before, Johnny did not test well. Growing weary and frazzled, I began to figure out how I could get some help. And how Johnny could finally get the ever “elusive” autism diagnosis so I could get some directions while traveling this road that seemed to be an ever-growing turn about with no exits in sight.
Traveling down this road, especially in the early years, has given me gray hairs, dark circles, and an addiction to caffeine. It has also taught me perseverence, compassion, acceptance, how to yell at strangers and how to laugh… really hard and embrace Johnny for who he is, who he was born to be…cause he is waaayy cool…and as I say about my life, I’m not sure about “lucky” but blessed…absolutely.
Want to hear straight from me? Of course you do! So, tune in. Tomorrow, April 16 at 11 a.m. est until 12 I will be a guest on the popular radio talk show, “Stop Raising Einstein.” with author and host, Tara Kennedy-Kline. Tune in to hear more about the road I have traveled, my life as a special needs parent and all the fun along the way! You can even call in! 877-864-4869