by Lillian Csernica on May 6, 2013
Day 6, Monday: If you couldn’t answer with your job, how would you answer the question, ‘what do you do’?
The answer to this is simple. I oversee the education and medical care of my two special needs teenage sons.
For the benefit of the folks who are just joining us, let me tell you about my boys:
Michael just turned seventeen. He has cerebral palsy and seizure disorder, both complications resulting from an emergency C-section at only twenty-three weeks. He is an invalid, requiring R.N. level care, and he spends his time in his wheelchair or in his hospital bed here at home. Michael takes seven different medications, takes Ket0-Cal as a liquid diet via a G-tube and Mic-Key button, receives Baclofen through an intrathecal pump, and had his scoliosis corrected by an eleven hour surgery than wired steel Harrington rods on either side of his spine. He also gets pulmonary treatments two to three times a day involving both a nebulizer and a percussive therapy vest.
John went full-term, but after his delivery via C-section (I told my OB/GYN to put in a zipper the first time, but did he listen?) John refused to breathe. The neonatologist standing by got John going, but that brief bout of hypoxia may have been the cause of John’s speech delay. We got him into speech therapy right around the time some interesting behavior patterns had begun to emerge. At the speech therapist’s suggestion, we had John evaluated by Michael’s neurologist. Guess what? John has autism. He’s low on the spectrum and he’s outgrown a number of the phases that some autistic kids go through. Now he’s fourteen, six feet tall, two hundred pounds, and I’m the only one in the house that can make him knuckle under when we have what I will euphemistically refer to as a “discipline situation.” John takes Adderall.
I am very fortunate. Unlike many parents in my position, I have R.N.s paid by a state agency and aides for John paid by a county agency. Given my own diagnosis of Major Depressive Disorder, I need all the help I can get, and that’s no joke. So yes, I am a professional writer, but in many ways that’s my escape, my occupational therapy. My true vocation in this life is being the primary caregiver, the front line advocate, the ringmaster, amateur pharmacist, diagnostician and therapist to my two wonderful, talented, funny and stubborn and brave sons.