The Birth of an Advocate

By Larina Pierce

It started just over ten years ago with the birth of our first daughter, Camille, who has Down syndrome. When a child with special needs is born, a parent-advocate is also born. I’m sure you can remember that day, if that day is part of your story. I’m also sure nobody told you about your new role as your child’s advocate. Sooner or later, though, it becomes obvious that this isn’t just ordinary parenting. (Darn it!) This child needs more. This child needs different. This child is a bit complex, maybe even overwhelming at times. This child is beautiful and intriguing, too, and a parent’s heart is ready for this new role, at least. (Whew! Love. The central component of advocacy is immediately checked off your list.)

So… what IS advocacy? Merriam-Webster defines it as “the act or process of supporting a cause or proposal”. That begs the question: What is our cause, friends? We actually have many causes, including making sure that our children have their medical, emotional, and educational needs met throughout their lives. That’s also true if you are parenting a typical child; you will have to be his or her advocate, as well. But advocating on behalf of a child with special needs is a whole different ball game, I dare say, and it’s worth thinking about how you, as a parent, actually become an advocate for your child. It doesn’t happen overnight but, thankfully, there is a bit of a method to the madness.

As I mentioned above, loving your child is step one and you get to check that one off the list right away. Step two is understanding your child. From personal experience, this may actually be the start of a parent’s discomfort; I spent many years and countless hours trying to understand who Camille was and why she did what she did. I found it difficult to understand what was driving her behaviors; I found it impossible to truly reason with her until she was almost eight years old; I felt like maybe I was destined to raise her without ever actually getting her. But I kept at it. I read books on behavior, I went to conferences, I listened to webinars, I bounced ideas off my friends (love you, Facebook Messenger!), I called my parents every few hours, I prayed, I spent a lot of Friday nights mulling things over with my husband (good times right?), and I observed my child. I observed Camille ALL THE TIME. I thought about her. I talked to her. I listened to her. Exhausting? Beyond words. But I understand her now. And because I understand her, I can advocate for her.

Step three? Refining your communication skills, if need be. When you go to write that email, or speak up during that IEP meeting, or call that doctor, you need to have your brain and your mouth under wraps. Invite some deep breaths, write down your questions and your main points, and speak respectfully. Have I done that every single time? (Oh, how I want to lie to you!) No, I have not. But I’ve done it 95% of the time, including under duress and in the throes of some highly charged meetings. You are only human; you are going to get angry; you are going to get frustrated and tired. But you must get and keep yourself under control, which brings me to what advocacy is NOT: it’s not unhinged. It’s not lashing out. It’s not speaking out of turn. It’s not aggressive. At its best, advocacy is eloquent, and elegant. It’s well informed and purposeful. It’s calm and effective.

Step four? Knowing the world you are navigating. For most of us, that involves understanding the particular medical challenges that our child faces and confronting the vast realm of special education. (I’m going to stick to the latter here, as that’s what I’m trained to do.) Special education operates via laws, regulations, policies, and guidelines, and that list right there would be enough to scare any well-meaning parent away. But you can’t be afraid; your child needs you to step up. The way you approach special education depends on where you are in the journey; if you have a very young child, you might start with the Wrightslaw book, All About IEPs. You might attend a friend’s IEP meeting as a note taker, just to see what IEP meetings are all about. You might head out to a DSAGC dinner and make some new friends who are walking the same path.

If your child is transitioning to Kindergarten, you will probably start to tour schools and meet with teachers and administrators. You might want to attend local or regional conferences. You should keep reading relevant books and watching webinars that seem on point. You will likely encounter at least a few (million) challenges with the school system as your child advances through elementary school, where the environment and demands change rapidly. Perhaps you will start to see behavior issues arise, or sensory issues, or emotional struggles. Or all of those, which is not uncommon! Just try your best to stay one step ahead of — and informed about — the most pressing concerns. Prioritize and tackle one or two at a time. That’s how you survive.

Step five? Honestly, it’s just repeating step four over and over again. Keep learning, however you can. Does it take a lot of time? OH, MY. Indeed. Is your child worth it? Of course!

Step six? Whether you just need a place to start, or you are in a true pickle, there are professional advocates who can help you move forward. I will be one of them, beginning in 2019. I’m refining my plan and how I can best serve our community, so hang with me!

I worry about special needs families and how they are coping with the enormity of what’s on their plates. I also think about teachers and other professionals who are so often called to do more than what is fair, given the limited resources they have. I dream about IEP meetings where everyone is working toward the same goal: figuring out what is best for the child, period.

Advocacy is everything, really, so jump in without fear (or with fear + a good friend or twenty on standby) and make it happen for your person! You know your child, you have a village behind you. You got this.

Larina Pierce, B.A., M.A., J.D., has an extensive background in communications, law, and educational consulting. She truly enjoys working with families who are navigating the world of special education. She recently completed a six-week course with Catherine Whitcher on IEP Coaching.