Advocacy: On Being Public About Our Children’s Differences

As all of us parents know, children do not come with an instruction book. We learn so much about how to parent while in the thick of it. For the most part, raising our kids has not involved many extraordinary parenting skills, and my husband and I never had to aggressively advocate for them. They have not had major illnesses. They are average, academically, so they have never needed special services at school. All of my advocacy efforts had been super low key: sending an email to the school about a random bullying episode, talking to a teacher about missing assignments…easy stuff.

When my child came out as transgender, all of that changed. This was new territory for us and for almost every other adult with whom my child regularly interacted. Suddenly in one fell swoop, I have had to speak out for my child’s interests—and not just on one front, but on several: school, medical, and even in the public arena. 

Recently, a transgender child was featured on the cover of National Geographic. The mother of this child was called out by some as an attention seeker. Other parents speaking out for their children with different challenges have received similar comments. But personal attention is not what the majority of parents who speak out seek. Actually, we are seeking improvements for our children.

We advocate for care. We advocate to educate. We advocate for acceptance. We advocate for change. Thankfully, we are not alone in this exercise. Other parents are also out there doing the same thing. Together, we fight against stereotypes, misinformation, and lack of education on the issues transgender people—and, in particular, transgender children—face. At the same time, there are parents advocating for their children with other differences and special needs every day. They are doing the same thing we are—battling incorrect labels and assumptions as well as lack of research, knowledge, and education—for different causes.

We all do this because we want our kids to reach their maximum potential and, without advocacy, there are roadblocks to them doing this. We can’t eliminate all of the roadblocks, but we know that getting rid of some and supporting them through the others will help them on their journeys. The obstructions that parents advocate to overcome vary from situation to situation, but all advocating parents have the same goal: to help their children.

Obviously, any advocacy we do helps our child, but when we chose to be public about our journey we help other families as well. This openness takes the form of blogging, lobbying, speaking to the media, completing trainings for educators, speaking with anyone and everyone who will listen and/or share knowledge, participating in support groups, etc.

My friend Joscelyn has taken her son’s battle with cancer public. She blogs. She shares other families’ stories on her Facebook page and her blog’s Facebook page. She participates in fundraisers for cancer research. Initially, educating other people about childhood cancer was not on her radar, but she later realized how little other people knew.

“At some point I realized I had a platform and people wanted to listen,” she says. “I alone can’t make a change happen, but I feel like the more people know and learn, the more likely it is we’ll see a change. My child will always be the most important life, but it will never be only about him. At the end of all this, he will be fine or he won’t. Period. But if he’s not, I wouldn’t want his ending to be in vain. I’d hope someone learned something from it. And I guess I see his whole journey like that. Everyone has something to learn from him, whether or not they’ve been touched by cancer. I will advocate for my child and kids like him until I can’t, or until I don’t need to, and I never see that happening. I will educate people for as long as I live, because education DOES save lives—sometimes it just takes awhile.” Joscelyn knows that recognition and understanding of a difference or an illness can affect perceptions, financial support, and commitment to solutions.

Families who advocate publicly want people to see that everyone has differences or faces challenges, but that does not limit who he/she can be. “When our daughter [who happens to have autism] was in the school play and rocked it, it showed everyone that the kids with special needs can do so much more than some people expect and will exceed our expectations if given the chance,” says my friend Candice.

As Dawn, another friend, said, “I truly think ‘normal’ (whatever that definition is—those without differences/challenges) isn’t the norm anymore.” Getting out there and sharing our stories helps people understand that.

Openness also takes away the shame about being different. It builds children’s self esteem, which helps them succeed in life. “We’ve been public about [our daughter’s] autism from day one. We feel like keeping it a secret was going to make her think that something was wrong with her. We chose to make it her super hero power and celebrate it,” says Candice.

“I also think that being so open about it has opened up her classmates to what being special needs really looks like. The kids that have been in class with her over the years have learned a ton about autism from our family and from [her]. I think it’s given parents an opening to talk to their kids about it and have an example they feel they can use to talk about it openly without hurting anyone,” adds Candice. “Parents and students don’t have any reservation about talking to her or us about autism.”

This advocacy at the school also helps the teachers and administrators understand as well. Fellow blogger Christy says, “This extends to less frequent disorders/illnesses, like cystic fibrosis and sickle cell. Often, the teachers and school administrators know nothing about [these disorders], which can create barriers for the child as well.” Education helps eliminate these barriers.

Sometimes a parent’s public discussion of an issue is specifically to help other parents going through the same thing. “My blogging and advocacy is not so much about autism, as about helping families with kids who are bright but different and are not being served in typical education settings. They need more information and more good quality choices. Our tribe includes kids with dyslexia, ADHD, anxiety, profound giftedness, and more,” says Inga. “What got me into blogging was that I wanted to spread the word about a handful of new schools [that support these kids] and realized I needed a bigger megaphone.”

Similarly, advocacy can take the form of in-person or online support groups where many parents of children with differences find guidance and encouragement while navigating their journey. Parents who cannot find other resources often start these support groups. A support group for families with transgender children exists in San Antonio because a few parents looking for information (disclaimer: I am one of them) found each other and created a place for parents like them to come together.

Many parents also take the step to talk to the media or legislators about the issues affecting their children. Not everyone is comfortable doing this, but doing so can reach a wide audience and/or affect legislation on the state and national level that benefits their kids.

Public advocacy on whatever differences your children might have may or may not be for you, but it does make a difference. The strides we have made for our children who are outside the “norm”—kids with educational, emotional, physical support, or medical needs—is all because someone advocated for them. We have educational regulations, new medical treatments, and safety features on things we purchase and use every day because parents just like you and me stood up and shared.

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2 Responses to Advocacy: On Being Public About Our Children’s Differences

  1. Katrina Stewart January 17, 2017 at 12:26 pm #

    As a transgender women who has been an advocate and activist for years, your blog entry has touched my heart. You rock, the witness you provide for your child helps all of us who are transgender and all of society in ways unseen but real. Thank you for you!

    • Ginger January 18, 2017 at 2:16 pm #

      Thank you so much, Katrina. We are doing what we would hope any parent would do for their child. I hope by being open we can help other families.