My child is struggling 
Now that my child has 
Can a busy parent with a full-time job be an effective advocate?
Suzanne Heath: Yes, yes. They definitely can. I have put anything I wanted a parent to have on the Web site of the New Hampshire branch of the International Dyslexia Association. You can take those flyers and put them anywhere. Mail them, and send them to a group of your friends; people who might use it and also pass it on to three more people.
There really isn't a wasted effort. People need to see things a few times, before they take a real look at it. I might talk to somebody five or six times, and I might get the brush-off. But then that person might read a magazine article, and then it won't be about a foreign subject. It will be about something they've heard about. Even using the correct vocabulary when you are at an IEP meeting is critical. When they talk about "best practices," you talk about "research based." When they talk about "measurement," you talk about "objective measurement." It's just little things that you throw out there. Just don't quit. It helps if you're an obsessed person, but even if you're not, there are things you can do.
So what is it that you do now?
Suzanne Heath: Well, I'm on the board of directors of the New Hampshire Branch of the International Dyslexia Association (http://www.nhida.org). I served on the board of directors of the Council of Parent Attorneys and Advocates. I do some writing for Wrightslaw.com, and I've written a book with Pete and Pam Wright about the No Child Left Behind Act.
Is it important to work through an organization?
Suzanne Heath: I think you have to belong to an organization that is well connected with the disability you are trying to learn about. Get information about their Web site, their conferences, their publications. They usually have a newsletter and put out some information about training. I would do this even if I could not afford to go to the conferences or the trainings because you need to know what's out there. Membership costs are low, and you need the contacts and the information. A lot of times conference presentations are available on audiotapes that you can buy from their Web site after the conference. Sometimes you can send for the materials that were used at the conference. Several parents can get together and drive to a conference instead of flying. But you need to know, from an independent source. You need to become an expert. To do that in any other field, you would do research and get training, and you need to do it in the parenting field too.
At this point, are you close with legislators? Or are you still removed and you keep on sending information?
Suzanne Heath: I keep sending the information. That's another reason I think people should be members of a national organization. Here are lots of resources for free newsletters and legislative alerts (including NCLD's LD News and Legislative Action Alerts). They tell you what the issues are, so that when you write, you're not just responding to what was on the nightly TV news, you've got the whole outlook of how this situation is being looked at by disability organizations all around the country.
Do you put personal experiences into your letters?
Suzanne Heath: Occasionally, if I think that there's a personal experience that ties directly into the issue, I will. I always tie what I want done to something. Sometimes it's national statistics; sometimes it's a personal story. There are enough national statistics out there, that instead of telling your child's story, you could tell the story of 5,000 children in your state, just by telling that statistic. But I do see a value in tying it to something personal, because when you are in it, you have the knowledge of how that statistic got to be that bad.
What is the most satisfying part of the advocacy aspect for you?
Suzanne Heath: Well, the task I took on was to raise my child first, which required getting him a good education and protecting his self-esteem. And in accomplishing those things for him, I learned other things. I also learned how many other people are in my exact same shoes. And how many children are in the exact same shoes. And it would just seem wrong to me not to pass that information on to other people who can use it.
You look at the drop-out statistics, and the prison statistics, and drug use and suicide, poverty, homelessness, incarceration, and you look at the corresponding numbers of those people who have learning disabilities, and the connection is incredible, and that needs to be stopped. It's kind of a background belief of mine — people can accomplish a lot if they do what they can, when they can.
How do you measure success?
Suzanne Heath: My big win is that my son is happy now. And he is proud of himself. He can do the work, and he knows he can do it.
The only real victory will be when we can go through the prison population, the homeless population, the unemployment population and not see that a huge number of those people have learning disabilities. You can also go through the Fortune 500 companies and pull out chief executives who have learning disabilities. A learning disability means you learn in a different way from the mainstream, and that's about all it means.
This Profile in Advocacy originally appeared in the LD Advocate's Guide.
