The absence of speech in many individuals with Mowat-Wilson Syndrome makes the need to advocate for them so great. Individuals with MWS will need to be advocated for and/or supported in self advocating for their entire lives.
What is an advocate? The definition of advocate is one that pleads the cause of another, one that defends or maintains a cause or proposal, one that supports or promotes the interests of another (Some synonyms of advocate: defender, supporter, champion, friend, true believer). Naturally advocacy is the act or process, “the doing” of being an advocate.
At some point or another just about every parent has been an advocate for their child regardless of whether or not they have disabilities. At the doctor’s office, at school, in the community there are many ways we advocate for children. However, when you have a child with disabilities the need to advocate becomes more involved. Why is the need to advocate for individuals with disabilities so great? Because they have rights, rights that need to be exercised and protected.
Congress finds the following:
Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society. Improving educational results for children with disabilities is an essential element of our national policy of ensuring equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities.
IDEA, 20 USC 1400 (c) (1)
Additionally, mandates from IDEA(Individuals with Disabilities Education Act of 2004) direct each state to provide programs and services so that students with disabilities receive an appropriate education. As a parent of a child with disabilities you may find times when you need to advocate to ensure your child is receiving the appropriate and mandated services.
Parents make amazing advocates, and here’s why:
- You know your child best
- The law gives you the power to make educational decisions for your child
- You have your child’s best interests at heart
- Parents are an integral part of the disability rights movement
However, parents also face obstacles as advocates. Some being: emotions, inaccurate information, failing to prepare, as well as external obstacles (school culture, beliefs, OSFA programs, school or system seeing parents as problem vs. partner).
Here are some basic tips to help parents as they begin to advocate for their children:
- Prepare your information ahead of time
- Do your research
- Be calm and confident
- Dress professionally
- Be polite
- Don’t go it alone
- Work as part of the team not against it
- Develop a file of child’s records (Suggested records to keep: provider list, medical information, results from testing and assessments, current IEP, progress reports, grades, report cards, discipline reports, notes and other important communication
Access RESOURCES. We are wise to seek help when we need it. We are not alone on this journey. Besides other families there are organizations and agencies who want to help individuals with disabilities. Look for local support in your area as well as nationwide organizations.
The need to advocate is great. It’s challenging but we all have a child who needs us to speak for them. And the need is not just for our OWN children but for ALL individuals with disabilities. Consider reaching out to your local and state representatives and expressing your needs and asking questions. Find out what laws are being developed to help individuals with disabilities. Speak to those issues with your neighbors, in your community, to local leaders.