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The Importance of Advocacy: I am our children’s keeper

Monarch Advocate Jeanette Wilhelm and parent of a son with a disability shares why advocacy is so important

Jeanette-Matt2I can remember all the details of the day the doctor said: “your son is not developing as he is expected based on the developmental growth chart.” We were given the news that cognitively he was impaired, and his ability to ever live alone or develop in a way where he would be independent was likely not to be possible.

His comments began a lifelong journey of searching and decision-making that forever impacts my son’s life. The feeling of loneliness was overwhelming and strange because there were so many “professional” opinions, referrals and suggestions. I could not keep up with all of the appointments.

In the midst of this chaos, I contacted The Arc and found a resource, a person who was on my side. Finally, we had the necessary guidance. From that point on, we received instruction on how to navigate the system. This person accompanied me to meetings, and not as an authority “to say you must do this” or “you know doing that is wrong.” This person, who was an advocate, would listen to my concerns, assist me expressing those concerns and explain the professional language used in all the meetings. It was no longer foreign. This was my first introduction to advocacy. Although my son is now an adult, I still contact this person for support.

Now, I attend school meetings with other parents just as my advocate did with me. I share vital information about changes in policies, help them to understand what their rights are and other key information. I even cry with them and provide a shoulder to lean on. Why? Because as parents, we are so emotionally involved with our child, it is often difficult to face the struggles or admit that our child needs assistance, especially when the feat seems impossible. The advocate is the champion who reminds everyone in the room that it is not only possible; there are protections for children with disabilities – and it is the right thing to do.

I never saw myself as a political person before I became a mother. Yes, I would vote, but did not give much thought to the “issues.” All of that changed, when my first child, Matt, was born. I follow issues, policies and laws for how this will impact not only my son, but all people with disabilities. There are many lawmakers in local, state and federal arenas who know my first name. Why? Because the legislative people making the decisions must understand their actions and how their decisions impact real people and families.

This is why advocacy is my passion. I believe that it is important to protect the rights of people with disabilities. My experiences caused me to want to assist and support other families. I want my voice to be the hope, support and encouragement for people with disabilities who receive support as well as for their families. I believe I am our children’s keeper. After all, someone shared their passion and gift of advocacy with me.

Jeanette's Advocacy Tips:
Begin a notebook of all testing, applications and information related to child or family member. I still keep this information because there have been times I am asked: “When did your walk begin?” It is difficult to remember all the milestones after many years.

Become a member of local, state and national Arc. This gives you a voice in legislative rules, changes and laws that impacts your family. Publications, Action Alerts, Twitter and Facebook pages keep you informed on the latest resources, news and laws that may impact your family. Visit or for details.

Make sure to be on all waiting lists, resource lists or find opportunities that may benefit your family now or later. It is much easier to say that you are not interested if your name/slot comes up versus to need the resource and be told you are on waiting list.

Pictured: Jeanette Wilhelm, who serves as quality management coordinator and advocate at Monarch, with son Matt. 

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