Where in the Special Needs Parenting Handbook is the Chapter on Laundry?
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 of the white plastic laundry basket is hanging on by a thread as the remains of yesterday overflow its boundaries. Rainbow-striped, black-with-ribbons and leopard print fleece ponchos accumulate one meal at a time. They twist and turn, wrestling for dominance over pink- and gray-striped jogging pants, while black and purple polka dot knee high socks cling to them as companions. The ponchos are a more elegant and stylish option than the institutional white terry-cloth bibs often used in other settings.
Looking at the mounds of laundry, I remembered moments when I considered laundry reduction strategies. I could feed Mikelle, but would that really save time? And even if it did, would that process rob her of the dignity and control of feeding herself?
When I was a young married mother raising two children, living in a sprawling ranch style home in the southern suburbs of Denver, I had my white side-by-side washer and dryer just off the kitchen. After the divorce, the simple ritual of doing laundry stretched and grew just like the kids. We left the suburbs and moved downtown into a three bedroom condominium about half the size of our former home. The washer and dryer were now stacked on top of each other in a small closet at the end of the hallway outside our unit and we shared it with the residents in five other units on the second floor. If my timing was just right and I avoided Saturday mornings and Sunday nights, I could get three or four loads done in a few hours. For nearly a decade, we did laundry like this.
When my son moved out to seek his own future, at a time when I believed life should become easier, it became more intricate. Shortly after graduating from high school, Mikelle moved into her own home. Like her brother, she, too, was ready to feel the breath of freedom and seize the opportunity to live somewhat on her own.
After living with a roommate for a year in a rental property, she bought her own condo not far from mine. In her new three bedroom condo, she had room for two roommates; I had dreams of finding my lost free time. While the girls helped to care for her and provide lots of companionship, girl- talk and giggles, their homemaking skills were still developing. With loving care, I worked to balance the need for freedom and the necessity of a clean home, visiting every few days to the heavier housework, some chores and, of course, do the laundry. It worked well for years, then it didn’t.
After two roommates were dismissed within four days of each other, I sold my small oasis in the city and moved into Mikelle’s home. Today, we share six washers and six dryers with the residents of the eleven floors in her mid-century, mid-rise building. Each laundry load travels down two floors, through the glass-and-birch framed door to the laundry room. Once the door is unlocked, credit cards and quarters become the ticket to cleanliness; the price to wash each load is $1.25, to dry each load is $1.00. Last month, we spent $95 washing and drying our way to tidiness.
The laundry basket is like a cup which never empties, and reminds me of a scene from one of my favorite holiday movies, “The Bishops Wife”. In that 1940’s black-and-white classic, Cary Grant plays Dudley, an angel sent from heaven to answer the prayers of the local bishop, Henry, played by David Niven. Loretta Young plays the beautiful Julia, the bishop’s wife. One day, Dudley and Julia have set out to do some last minute Christmas shopping when they encounter an old friend, Professor Rutledge. As they chat, the Professor invites Julia and Dudley to his apartment for a glass of sherry. The Professor enjoys his drink, yet his glass never empties, thanks to the angelic powers of Dudley. Our laundry basket is like that glass of sherry, it is always full. Still, there has always seemed to be an angelic presence in our lives. I believe it is the miracle and magic of Mikelle.
Orphaned by three out of four parents, raised by a single mother and her brother, Kasey, she has exceeded everyone’s expectation despite the significant impact of her cerebral palsy. Yes, sometimes I wish I never had to do laundry again. But then I ponder, “Would that mean no Mikelle or no me?”On further reflection, I think perhaps it means asking for a little more help. We now have a new roommate, Taylor, and she is a great help to both Mikelle and me. I still do laundry, just not as often.