INSIDE OUT AND BACKWARDS
There were so many occasions that I had wished that the ground would just open up and swallow me whole. As a result of the chronic stress, worry, advocating, research, and just generally being on alert 24/7 I became ill. Eventually it became hard to keep regular employment, my marriage was rocky at best and bills continued to pile up. My son was not alone in receiving diagnosis after diagnosis. Chronic Fatigue, Fibromyalgia, and memory deficits topped my list. I even visited a neurologist who told me "It's stress. Don't multitask." How you say that to any mother let alone one who has a child with disabilities is beyond me...
I remember sitting on the hallway floor, tears streaming down my face, as I held on the door knob of my son’s room. He was on the other side of the door screaming, having a meltdown. The only way I knew to ensure his and my safety in that moment was to put him in his room and make sure he didn’t come out. I would hold the handle and listen both to make sure he didn’t hurt himself and to listen for any signs that he was calming down. What kind of mother does this to their own child I wondered as I listened to him scream as if he was in mortal danger. If I let him out he will continue to scream, throw things, hit and kick. I was never entirely sure what set him off to begin with so I had no way of knowing how to prevent it. I had been told by so many family, friends and so-called professionals that I should parent differently, that he was spoiled, that he just needed a good spanking. I tried everything, including the parenting workshops that were mandatory before gaining access to local specialists. No one believed that something was wrong with my son, not even my husband. I was totally alone, exhausted both mentally and physically and I was fighting for my son’s life.
I was the only one who could do it. I barely slept, ate poorly and failed to take notice of my own needs. I was not only mother, wife, daughter, sister, employee, and friend, I was advocate and researcher. I became a specialist in the subject of my sons every waking and breathing moment. I documented and investigated. I was bringing information to the medical professionals. I specialized in different stages of child development, difficult hard to manage behaviours, crisis intervention and unforeseen healthcare issues, Tourette Syndrome, OCD, ADHD, Asperger Syndrome, Learning Disabilities, P.A.N.D.A.S. Asthma, Advocating, Mediating, Household management/organization, Scheduling, Report writing, Record keeping, Budgeting, Bill Payments, Special diet concerns including food intolerances and/or allergies, Physical fitness, Prescription and alternative medications and therapies, Haircutting/styling, Skin care, Beauty techniques, Food preparation, Event planning, Hostessing, House Cleaning, and Grass cutting. I did all of these things under the guise that everything was perfect because no one believed me when I told them something was wrong. I was alone and afraid drowning in a constant state of panic and overwhelm, barely hanging on. My life had been turned Inside Out and Backwards and no one knew.”