With Mother’s Day just days away, I thought it would would be fun to share advice from mothers further along on the journey of advocating for a child with a disability. Mothering any child requires patience, endurance, and commitment. We advocate for all our children, both typical and differently abled. None come with an instruction manual, and everyone’s situation is different. Still, it’s comforting and enlightening to receive advice from others who have walked a similar path.
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This mother’s day I hope that you take some time for yourself, and realize that you’re doing the best you can for your child. Drink the wine, eat the chocolate. Kick back, and know you and your child will be ok. The following moms are proof of this. I asked all of these rockstar advocate moms the following questions:
- What advocacy advice do you have for moms just starting this journey?
- What advice do you have for new moms to prevent burnout?
Denise Gehringer of Nebraska has a 22-year-old son with Down syndrome. Jacob was named National Down Syndrome Society’s Champion of Change in 2017, and just started taking continuing education classes after working as a teacher’s aide.
Denise wants new moms to remember they’re the expert of their child. “You know them best, have spent the most time with them and have experienced what has worked and what hasn’t for them. Know that YOU are the most important member of the IEP team, the most important resource at a doctor’s visit, and have the lived experience to share with your legislators,” Denise says.
Denise says she has yet to master the burnout prevention, but she says “taking breaks from what seems like a never-ending need to advocate on behalf of your child is necessary to keep up the energy and wherewithal needed to be an effective advocate . Scheduling an activity that has nothing to do with “disability world”, a dance class, art class, cooking class, book club, etc. where you allow yourself to focus on something you enjoy, even for a short time, helps tremendously.”
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Beth Foraker of California is the founder of the National Catholic Board on Full Inclusion. Her son, Patrick, is headed across country to attend George Mason University’s LIFE program.
Beth encourages new moms to develop a Circle of Support for your child beginning in 3rd grade (a strategy she learned from another rockstar advocate, Janice Fialka-Feldman. Click here for more). “What this means is a group that includes typical friends, special adults in the child’s life and a friend that has a disability. These people meet once every 4-6 weeks to talk about how things are going and brainstorming any trouble spots or ideas the person wants to work through. I wish I had known about this for Patrick. I think it would be awesome! And very cool to continue in young adulthood,” Beth explains.
“Believe it or not, your child will grow up and need you less and less. The goal is independence but who really knows…my goal is actually interdependence for Patrick…so, work to nourish your marriage and your friendships…those will sustain you when your child needs less and less of your attention,” Beth explains.
Amy Van Bergen of Florida recently retired as Down Syndrome Association of Central Florida’s Executive Director, and now helps raise money for the Global Down Syndrome Foundation’s special projects. Her 27-year-old son, Wils, works as an office assistant at a law firm, and is an ambassador for the Best Buddies Citizens program in Orlando.
Amy says advocacy is “all about playing the long game, meaning approach all of your efforts with your long-term goals in mind. And one of the best advocacy tips related to that is this: always reach out to the losers after an election. Thank them for their willingness to run for public office, for running a campaign with integrity, etc. I can almost guarantee that today’s losers will run again or get appointed to leadership positions in the future and they will remember the folks who connected with them when they were down.”
“As for burnout, moms and dads always need to take care of themselves first. If you are new to advocacy and overwhelmed by trying to figure out legalese and policy doublespeak, identify a few advocate mentors. Look to them for guidance as you grow and learn. They will help you identify what’s truly action-alert worthy,” Amy says.
