PURPOSE
In 1990, our oldest son was diagnosed with autism.
That moment in time will forever be burned into my memory ... not because of the diagnosis, rather, for the seemingly endless, but necessary, gauntlet of denial, sorrow, depression, education, research, empowerment and advocacy which it heralded. It was a confusing time, a frustrating time ... few resources were readily available, and the "experts" were all too willing to dismiss my son and I with little or no hope and even less help. I learned quickly that if anything remotely positive was going to happen, that it would have to be self directed.
In 1993 our youngest son was also diagnosed with autism.
My wife and I have managed to forego the denial, sorrow and depression stages this second time around, and haven't slowed down yet on the rest.
We couldn't be more proud of all three of our children; they have all climbed developmental mountains, are all changing their and our world, and have taught us much more about life than we will ever be able to teach them.
We've also come to learn that most professionals want to be helpful. They, too, are often at a loss for resources and often assume that parents expect them alone to perform miracles, when simple collaboration is usually all that's required. "Role-playing" is never productive, and honesty always is.
Probably the most important lesson that we've been allowed to understand is this:
"You can't set aside a portion of the world for just YOUR kids to be safe and to live in; you have to make the world a safer place for ALL people to live in".
Yeah, we know... that's a pretty idyllic statement, but not only is it possible, we believe it's the ONLY way it can ever work. And it is working ...
Surviving the "gauntlet" of nay-sayers, advozealots, spin doctors, bureaucrats and "missionaries" for the latest "cure du jour" is both difficult and exhausting. Surviving takes time and it takes knowledge. No one can "give" those two things to you, you have to acquire them yourself. Moreover, everyone's concept of "knowledge" may not necessarily concur with your own version.
Hopefully, you will find those resources which will make your gauntlet shorter and less exhausting. I offer no recommendations; no endorsements. Simply read all that you can .... and trust your own judgement. Never worship at the altar of anyone's knowledge, and collaborate with ALL those whom you trust, and are open.
I asked God to take away my pain.
God said, "No, it is not for me to take away, but for you to give up."
I asked God to make my handicapped child whole.
God said, "No, her spirit is whole, her body is only temporary."
I asked God to grant me patience.
God said, "No, patience is a by-product of tribulations; it isn't granted, it is earned."
I asked God to give me happiness.
God said, "No, I give you blessings; happiness is up to you."
I asked God to spare me pain.
God said, "No, suffering draws you apart from worldly cares and brings you closer to me."
I asked God to make my spirit grow.
God said, "No, you must grow on your own, but I will prune you to make you fruitful."
I asked God for all things, that I might enjoy life.
God said, "No, I give you life so that you may enjoy all things."
I asked God to help me love others as much as he loves me.
God said, "Ahhhh ... Finally you have the idea."
( Author unknown, with thanks to NancyLynn )
Knowledge starts small ...
It starts right now ...
