“Have you lived here long?” new visitors to my house often ask.
To the untrained eye, I have to admit, it looks pretty bleak.
Living room – two leather sofas, one leather recliner, covered each day with washable and brightly coloured throws. One display unit, stripped of display items. One huge tv, situated high above the hearth, as high as possible, yet still daubed with yogurt finger prints. Spinach green carpet, freshly cleaned. Cleaned once every three weeks or so, as it goes. I’m on first name terms with my carpet cleaner (Anthony…black coffee one sugar).
To the dining room! A corner suite in pale green leather, bolted to the wooden beams. A dining table, similarly bolted to the floor. Six fold away dining chairs, folded away when not in use, stored in a built in cupboard, locked. A reinforced curtain pole with heavy blue curtains, lovely to swing on, most often to be found in a billowing crumpled mass on the floor. Family photos and home produced paintings, framed but with no protective layer of glass to preserve them into antiquity.
The kitchen. Standard, though locked with a number combination that is changed every third day or so.
Yes, fairly bleak. But all of this empty space is filled with love. As much room as we can spare for our children to run, bounce, roll, jump and scatter various substances (‘sensory play’ is the new nicety) without breakages or injury. A home brutally customized in order that our children can remain as residents, basking in the love of a united family.
My husband, Richard and I are deeply proud of all three of our unusual children. This empty house, full of love, strikes me sometimes as a greenhouse for exotic plants. Orchids, perhaps. Uncommon, exquisite, and requiring ultimate care and attention in order that they may thrive.
Twelve year old Lenny (Leonard officially, if ever he were to become a doctor…a destiny that seems less and less likely with each passing year) has classic autism. With no language skills and extreme sensory issues, life presents many challenges for him. Throw rapidly progressing puberty into the mix and you have a recipe for malfunction. However Lenny continues to thrive, to enjoy life through his finely honed senses, if not through intellect or communication.
Right now he sits awkwardly on my lap, his man-sized body squeezing into this preferred babyhood position. He runs calloused hands (bitten, licked and sucked since infancy) through a dish filled with soft petals of edible confetti. This activity will engage him for as long as it is allowed to continue. Lenny’s concentration is required not only to process the delicious sensory feedback, but also to keep his older sister, Daisy, at bay. An unguarded moment could result in fistfuls of his pastel treasure being pilfered.
Daisy is fourteen, and her love of the sensory rivals her brother’s. Physically, though, she is his opposite. The majority of each day for Lenny is spent in a state of muscular tension, and his body builder’s physique bears witness to this. Daisy is soft and pudgy like a twelve month old baby. She has severe learning disability, no language or understanding of language, a rare genetic condition (Kabuki Syndrome) and a physical beauty which melts the heart of all she meets. A cascade of golden curls, china blue eyes and a tiny pink bow of a mouth (when she was a toddler, I fed her with a doll’s spoon. Even the tiniest of baby spoons could not be accommodated.)
Doll-like and gentle as she looks, Daisy is now riding a roller coaster of hormones into her mid-teens, and has developed teenage attitude accordingly. What she wants, she eventually gets. If traditional methods (sweet smiles, sloppy hugs, crying….biting parent’s face) do not deliver, then she is happy to resort to a new and far more effective form of persuasion. Bashing her head repeatedly against a hard surface is a surefire way to gain immediate control of a situation. The next step is a padded helmet in which to squish her golden curls. None of us want that.
And then there is our eldest daughter, Rose. Rosie is the reason we are here today, providing a guided tour of our empty home and its strange inhabitants.
At sixteen, Rosie is small in stature with an hour glass figure to die for. Her half shaven hair is turquoise in colour, the latest in a variety of experimental shades to celebrate her graduation from school to college. A self-diagnosed (later medically confirmed) Aspie (Asperger’s Syndrome), Rosie has a depth of intelligence and wisdom that is uncommon in humans, and almost unique in one so young. EMMY winning presenter, writer, illustrator, political campaigner and lately standing ovation commanding TED speaker, she has made her parents very proud. It has been a fascinating journey for Rosie who has come so far so fast. It has been a journey that her parents have been privileged to share with her, and one that her siblings are completely unaware of.
Welcome to my bleak home, and to my wonderful family. My pride in all of us makes it very easy to share this unlikely story of success.