by Lillian Csernica on April 2, 2014
Hello. My name is Lillian, and I am the mother of an autistic child.
Went to see my therapist this morning. Told her how tired I was of living this life. This week is Spring Break, and so far every single day has been totally FUBAR. (For those of you who don’t know what the acronym means, please take a moment to Google it. Thank you. I’ll wait.)
Monday — No aide for John. Car trouble.
Tuesday — No aide for John. Different aide. Health issues.
Wednesday (today) — No nurse for Michael! That was a nasty surprise that took four phone calls to sort out. My husband had to watch Michael (Chris normally sleeps late due to his work shift) while I kept my therapy appointment. My mother was driving, so I took John with me. No aide for John today. When I got home, I had three hours of Just Me & The Boys. I’m not used to that. Then the afternoon nurse showed up.
Thursday — The nurses are all sorted out. Will John have an aide? That remains to be seen. Same for Friday.
Is it any wonder I can’t stand living in a constant state of crisis, of my support staff flaking out on me, of John being disappointed and his routine disrupted, of Michael not getting his medication on time and having a seizure? I haven’t been sleeping more than about four hours a night lately because I ran out of one of my insomnia meds and getting the refill was the usual complicated mess. There’s nothing like sleep deprivation to make even the smaller glitches seem like a few more anti-personnel mines thrown into my path as I struggle through the day.
Autism. It’s taught me a whole new vocabulary, words like “neurotypical,” “noncompliant,” and “perseveration.” I’ve learned about the Praise-Prompt-Withdraw method, the Prop-Rule-Role method, and the importance of preventing the anxiety spiral from gaining momentum. You have to catch that when it starts or you’re in for what a boss I once worked for called, “weeping and wailing and gnashing of teeth.” Yes, it’s a Biblical reference, and well it might be. The Seven Plagues of Egypt have nothing on John when he’s well and truly in the grip of a full bore meltdown.
Autism has also taught me tolerance. The ability to see people as individuals, each possessed of their own unique strengths and weaknesses. The importance of not making assumptions, of not being judgmental, and of lending a helping hand at any and every opportunity. I am no saint. I have a bad temper made worse by depression and lack of sleep. I get very frustrated when all the staffing crises and school problems and medical issues drag me away from my writing. I can’t wait to run away to the next convention where I can leave this life for a few days and wallow in the companionship of my fellow writers, readers, and dreamers.
Part of me feels really guilty over not feeling guilty about that.
Autism is a spectrum disorder. You know what? BEING HUMAN IS A SPECTRUM DISORDER!
I don’t have any profound wisdom about this. I have no eloquent, compassionate statement to make. My one son is crippled for life physically, and my other son may well be suffering learning disabilities more serious than I had previously realized. Life is tough for us. The bottom line remains the same. I love my sons with all my heart. I will live this life seeing to it they both enjoy the greatest quality of life they can possibly achieve.