A Call for Unity
“There is one thing stronger than all the armies of the world; an idea whose time has come.”
- Victor Hugo
For several years now since my youngest son was diagnosed with autism, I have volunteered my time to help inform and unite parents of children with autism spectrum disorders. I know how lost and alone I felt during those “rookie” years of autism, and so it has been my mission to be there for other parents just starting out on this journey. Many parents inspired me to keep on keeping on, but it was one parent in particular who motivated me to write this.
I recently had the privilege of attending a policymaking class where speakers from around Texas and the nation shared their knowledge and expertise. Derrick Dufresne has been the most inspirational to me.
I share with you some of his key principles, hoping it will inspire you as it has inspired me; inspire you as a person, as a parent, and most importantly, as an advocate for yourself or for your child, with a sense of urgency and passion as never before.
As a parent of an 11 year old son, one of the quotes I love from the session is, “The only way to predict the future is to create it.” The only way to ensure that my son has the supports and services and freedom of choice when he is an adult is to work my hardest to create that now, today. I can’t sit at home and hope for the best, wondering what services and supports will be available for my child when he is 21. I need to work now to show my legislators the need to create those services!
Advocating now to create the best future I can for my child is required because “Due to budget cuts, the light at the end of the tunnel has been turned off.” Texans, we need to form a united army and advance our way to a better future for our children so that light can be turned back on! If, as I learned, a bunch of parents can get a school to reverse a ruling against cupcakes at lunch, then surely we can unite to achieve something a bit more substantial!
In January 2005, a new legislative session will begin in Texas. This is our chance to channel our many different voices and views for a common purpose. It seems to me that the common thread is what’s best for the individual; housing supports for individuals to choose where they believe is most appropriate – whether that be an institution, state school, community based housing or at home with parents. We can collectively advocate that the funding, supports, and services follow the individual, allowing them freedom of choice.
But the only way to get that message across is to unite to make our voices heard. The families of 9/11 victims have shown how it can be done. Not all of us can go to Washington, but thanks to technology, our voices can be heard in many ways from the comfort of our homes. Call, fax, e-mail, and write your legislators and urge them to support freedom of choice!
The question is not “can changes be made,” but rather, “how badly do we want change?” In Lewis Carroll’s in Alice in Wonderland, Alice came to the fork in the road. “Which road do I take?” she asked. “Where do you want to go?” responded the Cheshire Cat. “I don’t know,” Alice answered. “Then,” said the cat, “it doesn’t matter.” But we parents must know what we want for our children in the future, and what THEY want for themselves, and work tirelessly until we get it. If we don’t, someone else sure is ready to step in and decide that for us.
“But I’m tired, overworked, and stressed to the max with just everyday survival!” you may be thinking.
We all are, but a great quote from Wright’s Law says, “When you are wrestling with a gorilla, you don’t stop when you are tired; you stop when the gorilla is tired.” Find the time, make the time, steal the time to make your voice heard! Know what you want for your child – and do not stop until you get it.
Utilize this gem from Derrick: “NO: A temporary sign of instability that requires additional pressure for someone to change their mind.” Create a new way of thinking about the word “No” as it applies to your child’s freedom of choice and rights. Do not accept “NO, your child can’t live there; NO, we can’t fund that; NO, your child can’t be included; NO, you don’t qualify for that….”
Derrick described service providers, schools, agencies, departments and legislators that say “NO,” as unstable. How can they make informed decisions when they aren’t in our shoes? Therefore, “NO,” just means that we need to go back, regroup, reorganize, and put more pressure on the system to change. No need to get mad at them, because they are just unstable and ignorant. Just pursue until you get what you need!
Derrick also used the illustration of a deck of cards, saying we were each dealt the cards we have. (I choose to believe that I was blessed by the cards I have!) Nevertheless, we do not have the option of exchanging our cards with someone whose life is better or easier. We cannot exchange them for more money, time, or power, and can’t afford to waste time wishing for better cards. These are our cards and we need to play our hand the best we can. Just ante up and play your cards for all they’re worth! The issues we have to deal with daily and in the future can be horribly depressing, but please hear the passion in these words – THERE IS HOPE. We can change things.
How do we do that? Join a local advocacy organization or listserve to stay informed on the issues. When there is a public gathering or rally, be there! Form a relationship with your elected officials – write them, call them, fax them, e-mail them, visit their office. Not just once – but regularly.
Join local/state advisory committees. When you receive an action alert, ACT! Don’t assume that everyone else will, and that you don’t need to. Elaborating on the idea that the only way to predict the future is to create it, when we sit around and simply try to predict or complain about what is or is not available for our loved one, we are the victim. But when we actively work to create a better future for our loved one, we are the victors.
Which are you going to be? The time to decide is now. The time to act is now.
“If we wait for the moment when everything, absolutely everything, is ready, we shall never begin.”
- Ivan Turgenev.
Written by Michelle M. Guppy
MichelleMGuppy@yahoo.com
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Ways to unite in Texas for Autism Spectrum Disorders:
http://health.groups.yahoo.com/group/Texas-Autism-Advocacy/
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