Someone had the gall to say to me recently that the real tragedy of autism is revealed in the lost hopes and dreams of the of the families involved. As evidence to support her case, she spoke of lost incomes and broken dreams. Diminished lives. Soured futures.
This sentiment seems to be taking root and spreading across the mainstream media. Even a portion of the "cure autism" community has jumped on board. A recent film was released by one such organization which hammered home the horrendous difficulties families suffered by caring for children with autism.
Granted, this life has its hard times, often to the point of grueling. If one chooses to dwell on the negatives, the shattered dreams can surely seem countless.
Having birthed and raised two lovely boys with autism, I've had cause to put many a gilded dream aside. Because my son's have autism, we've certainly known disasters, disappointments, and financial challenges that most families could not begin to comprehend. There have certainly been days after weeks of sleepless nights when I have contemplated quitting, leaving, dying, anything to simply get some rest. And I am deeply ashamed of each and every one of those moments.
From what I've observed, living with the diagnosis of autism in a child can also give rise to miracles. Loving someone with autism holds the power not to defeat, but rather to transform a caregiver's dreams for their own lives.
I have seen this transformative power lift parents from the ashes of hopelessness with nothing more to carry them beyond a passionate love for their children and a desperate desire to make a positive change from which all people with autism will ultimately benefit.
I have watched single moms successfully take on educational systems that often seem to work only to diminish opportunities for positive outcomes for students with autism. I have known fathers to publish books in support of their cause, and uncles to make movies designed to broaden awareness. I have known couples who have challenged legislation and who have changed laws. I've met grandparents who have come out of retirement to organize meaningful non-profit organizations. I have watched my own daughter, at the tender age of six, make a televised plea for appropriate early intervention for her brothers. I have watched the kind of miracles unfold that must leave our awestruck Creator grinning from ear to ear.
Call me blind if you want, but I don't see many families who would say that their lives have been laid to waste by autism. I do see many lives transformed into something more meaningful through accepting the call to advocacy. I see in this community a legion of heroes who have abandoned more materialistic pursuits to fight for their children's most fundamental human rights. I am proud to stand alongside these family members of people with autism who do their utmost to build a better world, and to sow new dreams for their children's futures .
If I dwell on it, I might find it strange that I seldom see the families of typically developing children doing their utmost to leave their children a better world. But then again, why would they feel they had to?
I can truly say that I am a woman redeemed by the needs of her children. And what of all the hopes and dreams that I entertained before autism entered mine and my children's lives? You know, beyond writing, what few aspirations I can recall just don't seem worth reclaiming, even if I could.
Saturday, July 22, 2006
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