by Joan Burton
For a library that is ambling nicely into its third year it would seem outdated to have holdings dating back to the 60*s, but interspersed among the clever catchy new and best on the market are a fine showing of oldie*s.
Disorders are not new but the way we handle them and are challenged by them may very well merit a closer look. Have we really come a long way? Has society become more generous in its outlook and cash flow towards its most needy members? One only has to poll a handful of people who would quickly say,* Oh my Gosh. Yes we*ve come along way.* There is less institutionalizing of severely handicapped, more programs, more money. No word of a lie this is true. Historically children with severe disabilities or even mildly disabling conditions were put away out of site. Minds were not engaged and true or optimum potentials never reached. Further crippled by a system that could not provide for them, families pressed on consumed with guilt but free from the burden that no one would or could help them carry. This however is not the case for, Nicola Schaefer, 1978 author of Does She Know She*s There? Nicola and her family doggedly avoid the institutionalization of their severely handicapped daughter. Her timeline doesn*t march with ours but her tenacity, ingenuity, and creativity are an inspirational model for modern day proactive families. The chronology of events is however encouraging when one looks into her world and realizes that indeed we the people and the government have come a long way. Witty, poignantly honest and alarmingly absurd she brings one to the conviction that life with a severely handicapped child can be lived within the home and community no matter how few the services or how tiresome the battles are.
The Siege, by Clara Claiborne Park written in 1967, is so rich in determination and family bravado that one would want to take on the challenge of absorbing the writers attempt to portray the first eight years of an autistic child*s life. Completely unaided and shall I admit unhindered by the offering of inadequate or non existent programs for her daughter, Clara begins to attack the protective world her daughter resides in. What possibly can one learn from her story from way back then? The answer is plenty. This parent*s journey did not stop at the age of six as current government initiatives for autistic children say we ought to. The window of learning was never shut for young Elly, as the persistence of her family held it up, propped it open and consistently stuck there head through it. Time and again no matter what the adversity of their era was handing them by way of , apathy, non existent therapies, inconsistent diagnosis, lack of knowledge or understanding of autism this family forged ahead. Clara*s story however, smacks of the familiar. If the truth be studied, if research was compiled the face of this stories trials and triumphs could be penciled in as a 2003 portrait. It would bear the markings of any portrait of a family raising a child with a disability. A worry line here, and weary line there, a wrinkle marking the times of joy and one not far off etching out the pain, one or two depicting worry, fear, and hurt, and then a final obvious line far more visible than the rest. The line etched historically in every parents face. The mark of time. Yes these are fabulous reads. They tell us where we have been and yet they also tell us to continue. To wait ,for in good time something good something sincerely stable will come of the patient persistant plodding along all parents do when faced with the many challenges of raising a special needs individual.