By Catherine H. Knott, Ph.D.
The desire to advocate for one’s child comes naturally to most parents – as naturally as a protective instinct comes to a mother grizzly bear seeking to defend her cubs and forage food to feed them. Parents today operate in a complex world that includes medical and legal bureaucracies much more difficult to navigate than the wildernesses grizzlies inhabit.
It is critical for parents advocating for their child with autism to learn as much as possible about these different systems and the best ways to deal with them. To navigate the bureaucratic wilderness is just as important to have the right supplies and preparation for a trip into the physical wilderness of the grizzly bears.
TAKE ADEQUATE PROVISIONS: Build Support Networks for Yourself First
Parents limited time. Many have jobs demanding more than forty hours a week and most have other children or family members needing attention.In addition, a household needs constant management to function adequately. Advocating effectively means committing even more time to understanding and operating in the systems affecting your child.
Starting a conversation with your child’s teachers with a burst of energy is ineffective if you are unable to follow through on their suggestions and requests for information. The first step for parents wanting to advocate effectively is building support networks. If you are comfortable sharing your needs in your primary networks, including your extended family, friends, colleagues, religious groups, social groups, etc., you may be pleasantly surprised by the amount of support you get. Also, input from other parents and relatives of special needs children is extremely valuable.
Come up with a list of specific tasks and items that would help you most, such as additional childcare, a prepared dinner once a week, or contacts with a wide range of special education teachers and counselors. Then when friends, family, and colleagues ask what they can do to help, you know exactly what to say.
Remember to include time to take care of yourself physically and mentally. Working with complex bureaucratic systems often presents parents with extra challenges and frustrations, such as periods of time when nothing seems to be happening despite all your efforts.
TRAVEL LOG: Create Documentation Systems and Keep Records
Since time is of the essence, it is important to organize and document your research efforts and contacts with people at the school, doctors’ offices, support personnel, or the legal system. The record you create saves you from wasted time redoing research. It also provides your best tool for advocacy – documentation shared with professionals from any field. A good filing system, whether on paper, computer, or both, is essential. Be sure to include, at a minimum, separate files for school information, outside agencies, family information, medical information including developmental records, contacts, and expenses.
A notebook for tracking and recording all telephone contacts and meeting notes is even more important. Date and label notes on all phone conversations and include the full names and professional titles of everyone involved in your child’s progress. It is much more effective in a school meeting, for example, to be able to say, “On (date), Dr.______ told us that our child would need special support in ________” than to say, “A while back, someone told me . . .”
In addition, when you think progress is too slow, tell an administrator, “We called five times and spoke with the following staff people about the issue on these dates,” than to say, “We have been calling and calling and nothing ever happens.”
FIND GUIDES: Seek Assistance on Your Journey
If you were climbing a mountain in the wilderness, you would seek a guide or experienced person to talk to before setting out–or a guidebook to the area. Advocating for your child with special needs, whether Asperger’s or any other need, is a similarly challenging task, and you should not hesitate to ask others for advice. There are other parents who have dealt with school bureaucracy and the medical and legal systems affecting your child. Seek them out by spreading the word in your extended networks or by attending parent support groups. Try asking your medical provider or school counselor for suggestions. Make sure to spend enough time with them to hear how they have navigated, successfully or unsuccessfully, the challenges these systems pose for children with Asperger’s or other special needs.
This may mean inviting them for a meal or coffee or finding a time for an extended phone conversation. Their advice is vital because it is local. Nothing in a book will tell you which administrators or counselors in your school district are particularly helpful, or which local therapist has the best approach to dealing with Asperger’s. Parents in your community who have been advocating for their children are often eager to share their experiences and knowledge. Be particularly alert to learn the best local sources of support.