As a parent to two girls with special needs, I find that there are certain areas of their lives I handle better than others.
For example, because of the work I do as a writer and a speaker, I've taken both of my kids' communication goals very seriously throughout the years. I learned basic sign language with gusto, and now enjoy reading to the kids at home and drilling my older daughter on her sight word flash cards.
There are other areas of the special needs life I find ominous and, at times, exhausting. The biggest of these is advocacy.
I'm not alone.
“I will do whatever I need to advocate for Tinley,” Chicago mom Sarah Britton says about her daughter with Apert syndrome. “I am in an appeal right now over dental care. I spent hours researching it all, and I'll keep going.”
I get it. I really do. If we don't advocate, who will?
The definition of an advocate is a person who publicly supports or recommends a particular cause or policy. This is where it gets tricky for me. My kids are simply that, my kids. I don't think of them as a cause or a policy in need of support. I know advocacy is important, and I know it is one of my responsibilities as a parent.
Have you experienced the tension between wanting to advocate for your child and getting overwhelmed by everything else in your life? If so, here are a few ideas about advocacy that might help us all:
Remember why you advocate
You love your child. You know he deserves a fulfilling life as a contributor to society at large. He deserves all the freedoms anyone else does, and as much opportunity as he can handle. You are his advocate because you care.
Whatever you do in order to advocate, keep that in mind. With the proper agenda comes a proper focus on areas that are most important to your family.
Advocacy has different forms. There is community and nationwide advocacy, but there is also daily, personal advocacy for your child in the classroom and at the doctor's office.
You won't be able to do everything you think you should to advocate for your child.
Check out books like “From Emotions to Advocacy: The Special Education Survival Guide Paperback” by Peter W. D. Wright and Pamela Darr Wright. It will help you figure out important issues and differentiate between ideals you have for your child and what is really needed at this point in her life.
We parents know what is “best” for our children, but sometimes emotions cloud judgment. When it comes to advocacy, you have to be open to compromise with teachers, therapists and medical professionals, and attempt to distance yourself a bit from your parent emotions.
Don’t advocate alone
Susan Badeau, a mom to several children with special needs, says that advocacy is often best accomplished within the context of groups. That way, people can play different roles–one takes notes, one does research, one speaks out. Other parents are some of your best resources. Take another parent with you to an IEP meeting. Bounce ideas off of each other and compare notes.
None of us have time to reinvent the wheel. And when you get burned out, you have people around you to spur you on.
Break large tasks up into small pieces
Adding your advocacy efforts to a large agenda can seem overwhelming. Break it up into small pieces. If you want to help educate people on the recently passed ABLE Act, think of measurable ways you can do that in your life. Can't take on Congress? No problem. Speak to your child's class about disability. Share advocacy posts on Facebook. Volunteer for an event that supports your cause. Anything you do to advocate for your child helps.
Take a break
Some days, we're not thinking about advocacy; we're thinking about survival. We can't always advocate for our kids on a larger scale. Give yourself permission to take a break, or to sit out on a cause or a planned activity.
“We all have a responsibility to take our turn at community advocacy, but it is absolutely OK to take a break if you are overwhelmed,” says Anne Grunsted, a Chicago mom to a boy with Down syndrome.
Choose your battles
Educate yourself to know what battles matter. Prepare to advocate for your child when and if it is needed. Your family is helping to change the world. Remember that advocacy benefits your family, too, by teaching them to advocate for themselves.
Just do something
Mother Teresa said, “Never worry about numbers. Help one person at a time and always start with the person nearest you.” Perhaps the best way to advocate for our kids is by loving them well and enjoying them immensely.
“I like you best,” my daughter says to me first thing when she wakes up in the morning.
Advocacy on a larger scale will happen. And we will join in as best we can, when we can, because we want to see change occur. We want everyone to see value, purpose and dignity in people who are differently-abled.
But hold this thought close: As frazzled parents, sometimes the most important advocacy is to simply love our children, showing the world not only that kids with special needs can be valued, respected and loved, but that they are.
Gillian Marchenko is a Chicago mom and freelance writer. She has penned a memoir about special needs, Sun Shine Down.
Let us plan your weekend with the best family events and activities in Chicagoland.
Start the week right with deals, prizes, parent life hacks and more delivered straight to your inbox.
Need last-minute ideas for a weekend of family fun? No worries. We've got you.
Get the inside scoop on the people, places and things we are loving right now.
Resources, tips, inspiration and more for parents of children with special needs.
Score exclusive offers from our fabulous advertisers.