The Journey from Struggle to Strength

From the Director

April 18, 2011 Prism Newsletter
By Tonia Ferguson

Throughout the nation, parents of children with autism and other developmental disabilities face many struggles navigating the array of information and service systems available to them. For those who have just learned that their infant or toddler has special needs, the questions of when and where to begin these processes, who to contact, and whether services are available in their community can be overwhelming.

Parents whose children are already in the school system may well be aware of Individuals with Disabilities Education Act (IDEA), a federal law that provides special education for all children with disabilities. Yet they also may have many questions. For years, I have heard about families struggling through the special education maze. Because of the many intricacies of the special education process and occasional difficulties with working with individual teachers and districts to ensure that their children are getting the best service and education possible, many parents often feel confused, frustrated, perplexed, and generally lost in the system.

One thing that I have learned as a parent is that it is critical for any parent to be as informed and savvy as possible in order to negotiate these mazes of services and systems. Each family needs to become an expert at navigating the system and knowing your and your children’s rights in order to move from stumbling through a maze of systems to taking a leadership role in your child’s services.

Recently, the Center received a call from a parent who was preparing for her first transition planning meeting. In this conversation, this parent said, “I just don’t feel empowered to advocate at my meeting…. Will my daughter have a job when she graduates? Are there laws that guarantee her services and benefits as an adult?”

The Center directed this parent to our Autism NOW website – This website is a critical tool through which Autism NOW provides families, people on the spectrum, and professionals resources and information on issues across a lifespan that are relevant to people with autism and other developmental disabilities.

After several days, we heard back from that parent. After visiting the Autism NOW website, this parent told us, “I feel empowered NOW!”

While we here at Autism NOW provide insight into the many entry points, rules and regulations, and strategies and best practices for accessing and navigating of the maze of systems and services, the central goal for why we are here is for you and your journey from struggle to strength. We are here to empower YOU to make the best decisions for yourself and for your family.

So, look around You, empowered!

Tonia Ferguson is the Director of the Autism NOW Center.

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