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. For proof of this, I asked some mothers, who are further along on their parenting journey, to give some sage advice to newer moms. 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?
I got so much good advice from moms, that I made this a 2-part series. Click HERE for the first part!
If you haven’t listened in on Charmaine Thaner’s Facebook Live posts, you’re missing out. Every week, Charmaine hosts an advocacy guru or gives timely advice on IEPs. Check it out here. Her son, 29-year-old Dylan, rents his own house with a roommate, attended the University of Colorado Springs, currently works at Red Robin restaurant. Charmaine credits all of this to full inclusion in K-12.
Charmaine’s advocacy tip for new moms is to focus on your child’s strengths. “At the beginning of an IEP meeting ask each person sitting around the table to share a couple strengths your child has. It creates a positive tone and helps everyone see your child as a person with gifts to share,” Charmaine says.
To prevent advocacy burnout she recommends to build relationships. “The 3 Rs of Advocacy are Relationships, Relationships, Relationships. Get to know the staff as people, what they’re interested in, about their family, what you have in common with them. Help teachers build positive relationships with your child. When a teacher knows your child on a personal level they will go the extra mile for him/her.”
Stephanie Smith Lee and her late daughter, Laura, are the pioneer advocates for inclusive higher education. When Laura asked her mom back in 2000, why she couldn’t go to college like all her friends, Stephanie said “Why not!” That started an amazing journey that has help lead to more than 260 inclusive college programs for people with disabilities. Laura went on to graduate from George Mason University’s LIFE program, work at the World Bank, volunteering at a food bank, and becoming a nationally recognized self-advocate giving speeches nationwide with her mother by her side.
Stephanie’s advice to new moms: “Understand that you really can make a difference, and that there are many of us who have been working on advocacy for decades years who will help and support you.”
Stephanie says to “do the best you can with the time and resources you have available. Don’t feel guilty when you need to take time for yourself, your family, and your work. Come back at it refreshed and ready to make a difference!”
Senior Education Policy Advisor for the National Down Syndrome Congress, Ricki Sabia, has also been at the forefront of political advocacy and disability rights. She was instrumental in securing educational rights for students with disabilities in the new Every Student Succeeds Act (ESSA). Her son, 25-year-old Steve Sabia, lives independently with a roommate, attended Montgomery College, and works at Holy Cross Hospital.
Ricki’s top advocacy tip for new moms: “The ability to collaborate and see issues from other perspectives is as important as knowing your rights under the law.”
Ricki reminds parents to “pick their battles, join forces with others, pay attention to your health and well-being, and don’t forget to take time to simply enjoy your child.”
Amy Allison may not have a child with a disability by birth, but she has served hundreds through advocacy. As the Chief Operating Officer of the Down Syndrome Guild of Greater Kansas City, Amy has visited over 800 families receiving a diagnosis for Down syndrome, and currently serves 1500 people with Down syndrome. Attending the KCDSG’s annual, winter conference is a must. I learned how to potty train my own kiddo with Down syndrome, and will never forget the fabulous siblings workshop. Click here for more on that.
Amy says parents should “trust their gut and instincts. If something feels off about one of your children follow that voice in your head and keep pushing for answers regardless of what the “experts” may say to you. Allow your child space and grace to try, fail and make mistakes even though you can see the pain and heartache coming. If you overprotect your child and shelter them from the consequences of their actions, you set them up to fail as adults.”
As for preventing advocacy burnout, Amy says “be sure to surround yourself with a good group of friends and family members who will go to the mat for you or your kids. And DO NOT be afraid to ask for help or admit you are tired. Advocacy is a marathon not a sprint. Pacing yourself and choosing your battles will take you help you cross the finish line!”
I met Carolyn and her son, Walter May, of Ohio from a Self-Advocacy Communications Workshop I co-taught for adults with Down syndrome in our area. Carolyn says things have changed drastically since her son was born 45 years ago. Walter told me how he was bullied and taunted in school. Still, this mother-son duo thrived despite the prejudices they faced. He’s an extremely well-spoke self-advocate who works locally for the famous “Homies with Extra Chromies” t-shirt company, as well as a local tennis club. He spouts off sports trivia like no one’s business, and loves to joke around.
Carolyn’s advice is simple, yet true: “Never give up!” and “Always take time for yourself.” Thanks Carolyn and Walter for showing me what I have to look forward to. I’ll miss you guys!
Happy Mother’s Day to all you brave, wonderful mothers! Celebrate you today!
