Nowhere in the Special Needs Parenting Handbook will you find a chapter on laundry. The red, cloth-covered book worn from years of service and held together with a once crisp black binding is thick and full of information. The simple Catcher in the Rye kind of cover calms the reader; it does little, however, to prepare her for the complicated systems a special needs parent will spend their life navigating, often without a compass.
Words tumble over each other and meld together as the reader learns of Special Needs Trusts, Life Care Plans and various social programs -- Social Security, Medicaid and the like. In surveying the sprawling Table of Contents, not a hint of a chapter on laundry can be found. How does a young parent prepare for the mountains of dirty clothes destined to spread over the days and decades of their life? Some preparation, a bit of forethought or insight would have been helpful.
Then again, if I knew the constraints that laundry would have on me, how it would choke countless hours of free time from my life, would I have been able to get out of bed in the morning?
Decades have passed since I first opened my eyes to the reality that I continue to face like an oncoming freight train. I prepare myself every day for the basic task of doing Mikelle’s laundry.
Standing in front of her closet, I survey the simple wear and tear of living life with a wheelchair. The painted white wood trim is stripped clean from the wall where a closet door once hung. The drywall is pock-marked with dents and gouges from the steel brackets holding the small rear wheels of her sturdy chariot. The wheels are small, but the marks they leave are large as they deeply cut into the powdery chalk, leaving a trail of small white dust clouds on our polished cement floors. The abandoned trim, replaced three times now, stands in the corner of her room, a lonely reminder that our home isn’t quite big enough or tough enough for a 300-pound wheelchair.
A few years ago, we decided to fight steel with steel by lining the hallway walls with sturdy metal wainscoting. Screws hold the industrial strength polished metal corners snuggly, bolted to the walls. This protection helps reduce the wear and tear somewhat. The white trim around the bathroom, pantry and linen doors, however, cannot escape the unintended abuse they encounter, bearing their scars bravely. The steel walls stop at the entry to Mikelle’s room, the door removed to allow for a less restricted access. The broken handle