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The Call to Advocacy for Your Child with Autism

Becoming an advocate will never change the condition, but it can utterly change your perspective and that of everyone you come in contact with. As you gradually release the dreams you had for your child before the diagnosis, you will move through the difficult stages of grief toward the calm of acceptance. Then you will be ready to take on the new role that this diagnosis asks of you.

"We need you," Jim Sinclair said in his plea to parents. "Your world is not very open to us, and we won't make it without your strong support. . . . Take a look at your autistic child again and . . . [t]hink to yourself:

"‘This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But I know it's a child, stranded in an alien world, without parents of its own kind. . . . It needs someone to care for it, to teach it, to interpret and to advocate for it. And . . . that job is mine if I want it.'"

As the mother of an autistic child, I know how much this new job asks of a parent. I have felt for myself what a blow this diagnosis can be. Despite my deep, unqualified love for my son, it has literally forced me to find a new strength inside.

Learning how to advocate for my son has been the biggest challenge of my life. But now Marty is ten years old. In the years since his diagnosis, I've spoken with hundreds of parents who have children with special needs. It's been a wonderful opportunity for me to help. Along the way, I've become a recognized expert myself.

As a result of standing up for my own child and standing up for the children of my clients, I know exactly what it takes. I can clearly describe the road ahead — pointing out many of the pitfalls and showing you how to avoid them, explaining definitively what works and what doesn't.

Because I was so frustrated myself at the lack of clear information when I needed it most, you will be given concrete tools for navigating the laws, institutions and decision makers that so greatly affect your child's life. In the very next chapter, "Advocacy 101," you'll be introduced to the skills you need to become a powerful advocate for your child.

If I can move from anguish to advocacy, so can you. It isn't easy, but I'm going to show you how. Now let's roll up our sleeves and get down to business.

More on: Autism


Excerpted from The Everyday Advocate: Standing Up for Your Child with Autism or Other Special Needs.
Copyright © 2011 Penguin Group.
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