What I’ve learned about being an advocate

Our son, Adam, was diagnosed with autism in 2002, just after his third birthday. We have come a long way since then, and we still have a life-long journey ahead of us. I would like to share what I have learned about being a strong advocate. Here are some of the tools that keep "Team Adam" running strong.

First, a great pediatrician. We consult her on all methods of treatment. She tells us about the research and what is considered safe for Adam's situation. This relationship is one of the cornerstones of his care.

Second, communication with care providers. Adam has been in the day treatment program at Fraser Child & Family Center since the summer of 2002. We have a strong confidence in this program and in the staff that make it function. Getting to know the staff and having a physical presence at Fraser have been critical in Adam's continued progress. We feel comfortable asking questions and that our input is welcome. Sometimes we ask uncomfortable questions-we have to be direct and be careful not to waste his time for learning. My husband or I try to communicate with Adam's treatment team at least once a week, if not daily. We watch him in class and use the examples at home. The relationship with Fraser has been one of the greatest gifts we have ever received for our son.

We feel that the staff understands our challenges and joys.

Third, getting to know other families. We attend parent support groups as often as we can. We have gotten to know several families through Fraser, and this has been a great comfort. We also love to volunteer with the facilities that work with Adam. This is a great way to get to know all of the people involved and to meet other families.

Fourth, a strong support system. There are many terrific people in Adam's life. We are fortunate to have a supportive family. We have friends who understand and some that do not but try. Adam has great personal care attendants and a private tutor. We have found that the better Adam gets to know the person working with him, the farther and faster his progress travels. We are constantly trying to keep people in place for as long as possible. If you can make changes gently, you can avoid some of the regressive behaviors that surface during these transitions.

Fifth, taking advantage of opportunities. This year, I have had the opportunity to return to school. Since my main motivation in doing so is to help our son, I have selected an education path with a major in psychology. This will help me to better understand the information that goes into making decisions for Adam.

I guess the one thing that we try to keep in the front of us every day is that Adam is a little boy with a bright future. He is not autism or a bunch of behaviors to be controlled. We plan for him just like any parent, maybe even more carefully because of the challenges he faces. We would do anything for him. We have learned to be thankful for all the wonderful people he has brought into our lives.

Reprinted from and courtesy of the Fraser newsletter.

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