In his letter, Sukrungruang reflects on the loss of a specific writing program, but also on the dwindling support for arts and humanities in general—an issue that I now must grapple with as my community’s Poet Laureate. I read his words and was reminded, once again, that the most powerful advocacy is that which is fueled by the heart.

No matter what the issue, passion is what truly makes advocacy sing. Yes, Sukrungruang is a writer—a clearly gifted one—but heart and passion are the fuel that sets his advocacy on fire.

As the parent of a special needs child, I know all to well that heart and passion are often a double-edged sword. There is nothing we as parents are more passionate about than our kids. We need to channel that passion in order to become effective advocates. Because with passion comes strong emotion.

Strong emotion is like a stranglehold on the mind and the throat. It can make someone panic or go crazy with fear. Some parents fight. Some shut down. Others flee. When our child’s future is at stake, it can seem like a life or death struggle of epic proportions.

So what can we as parent advocates do?

Most importantly, we need to harness our passion and keep it in check. This is a tricky balancing act. For me it’s often helpful to bring a trusted family member or friend to Individualized Education Plan (IEP) meetings, particularly when I was beginning my advocacy journey. The friend served several purposes: witness, note talker, bad cop (to my good cop), brainstormer, and sounding board. But most importantly, she kept me calm and centered. This is more of a psychological or emotional benefit, but as a single parent without a partner, it was crucial to not go in alone. A friend also typically has more emotional clarity and detachment, which is why I recommend this strategy so often to parents.

I had a friend who came with me to numerous IEP meetings early in my daughter’s school career, and I owe Karen a debt I can never repay. After she moved to another state, I began to bring Barb, another close friend who is a retired special education teacher and my daughter’s reading tutor. In the past I’ve brought in-home therapists and case managers as well. I hope one day to get to the point that I don’t need to bring someone with me to my daughter’s IEP meetings, but maybe I never will. That’s okay. Because the point is to discover what works (and doesn’t work) for you the parent, as well as for your special needs child.

The bottom line: use your passion and love for your child to supercharge your advocacy efforts. Just remember to keep your emotions in check.

Enjoy!

My daughter has autism. There, I said it. It’s not like I’m ashamed or anything. Mom thinks that’s because my daughter is adopted. In other words, it’s not my fault. She believes I’d feel differently if Katie was my biological child, but I don’t think so. Most days I forget I was never pregnant. Women with biological children always think they misheard when I say that aloud. But it’s true. I skipped morning sickness, stretch marks, and breastfeeding classes and plunged straight into the deep end of the parenting pool.

Was it stressful? Of course. Would I do it again? Most definitely. But it doesn’t make me any different than the other mothers out there. We’re all just doing the best we can, with the tools we’ve got on hand. And sometimes all we have is a pair of warped plastic safety scissors and a stained oven mitt.

It helps in this line of work to be a good problem-solver.

For those of you who don’t already know me, my name is Cynthia Patton and I’m an author, attorney, and autism mom. I have a blog on my author website called An Unplanned Life (you can find it here). I’m also a public interest attorney. I used to practice environmental law, but these days my focus is special needs advocacy. I have a blog on that website as well. It’s called the Special Needs Advisor and focuses on less personal, more technical subjects such as IEPs and how to advocate for your exceptional child (you can find it here).

I have a plan in my head (and even on paper!) for how to keep these three blogs distinct and separate, but that’s just in theory. I’m sure the reality—like life—will be messier. That’s okay. This is a place where it’s safe to be messy.

In the autism world, it’s okay to color outside the lines.

In addition to autism and adoption, there are many interesting A-words in my life: addiction, alcoholism, abandonment, anger. I have what many would call a colorful life. Some might say crazy. Personally I think it’s a good thing I’m a writer. Even if my life becomes dull as a worn butter knife from here on out, I’ll have an abundance of material. More than I can ever use. But trust me when I say the material keeps pouring in. Even without the other A-words, autism virtually guarantees a life of adjustment and accommodation, a life of chaos and change. Unlike most, I’m okay with that. A specialist once told me I needed to cultivate a tolerance for fringe behavior. “That’s easy,” I said. “I’d much rather my daughter be eccentric than boring.”

Autism is many things, but boring it is not.

It’s also nothing to fear. Like all of the “interesting” A-words on my list, I used to fear autism. I don’t anymore. I didn’t get there overnight, but now it’s just a word, like awesome, awkward, and amazing.

And just for the record, I don’t think Katie’s autism is the birthmother’s fault. I don’t think it was caused by vaccines either, although I suspect they didn’t help the situation. To be honest, I don’t know exactly what I think on this subject except that I’m convinced autistic children are the proverbial canaries in the coal mine. Something terrible and life-altering is happening in our environment, and we are ignoring (or possibly avoiding) the warning signs.

I want this blog to be a place where parents can talk about the things that scare and overwhelm them. I want it to be a place where people are honest, helpful, and most of all, authentic. Together we’ll create a chain of love and hope that leads us out of the dark.

Follow me to the best A-word of all: acceptance.

I’m glad you’re here.
Cynthia