Demanding a Seat at the Table

When my son was diagnosed with autism, I remember this almost immediate pressure to become part of the club. To advocate. To take a stance for or against something.

And this mama wanted nothing to do with any of it.

My son was three years old. We were still trying to wrap our heads around autism and figure out what worked for him. We didn’t know what was wrong with the system. We were just surviving.

Our lives were hard. Our days were long followed by even longer nights. And like many other parents, we were completely isolated. We didn’t know any other parents that were going through what we were going through.

So, I started looking. I searched online. I looked for people like us.

Then, I joined a support group. I remember I was so scared to go. I didn’t know what to expect.

I went. And I vowed to to never go back again.. The parents seemed so angry. They were mad at vaccines or doctors or the system or whomever.

At that time, and even still today, the anger was too much for me. It felt like a witch hunt.

I just wanted to help my son. I wanted him to succeed. I wanted to find him the best help and services possible.

Simply put, I just wanted to make it okay.

As Cooper got older, I realized there were holes in the system. A lot of them actually.

Like so many other children, public education didn’t work for him. Healthcare was a challenge. He wasn’t an easy patient and therefore didn’t seem to get the best care. Insurance companies didn’t understand what we were going through despite the fact that I seemed to be calling them weekly.

Inclusion was a word, not always a reality.

I felt like I was always fighting with someone. I was pushed to this ugly place just to get his basic rights met.

I realized it was time.

I wanted to get involved. I just didn’t know where or how though. How does one mom make a difference?

I first started with this website. Then I started public speaking. Then I joined Partners in PolicyMaking, which I highly recommend.

Something very powerful stood out to me at one of the meetings. Sentence that has stuck with me.

And here it is:

Demand a seat at the table. Many of your children don’t have a voice yet. And some may never have one. You are their champion. Their advocate. Their voice. You need to stand up for them. But remember, you can make a lot of noise and never make a difference if you don’t have the right audience.

Until you have a seat at the table, and start talking to the right people, change will never happen.

How true is that?

Your table could be at the federal level. Or the state level. It could be for housing. Or the healthcare system. Or for Medicaid. You could want better bathrooms for people with disabilities. Or a swing for your child’s park. It doesn’t matter what it is.

Pick your thing. Take a stance. And make a difference.

For me, right now, I am choosing healthcare.

I have a very hard time understanding why my BIG health insurance company does not cover the costs of many autism related services. Speech devices and Applied Behavior Analysis Therapy to name a few. I’m not a dumb person. I know that it’s expensive. I know that they ‘assume’ the state (Medicaid) and schools will cover the costs. They are assuming wrong.

I’ve argued. I’ve pleaded. I’ve cried.

I got no where. I was just one mom.

So, last month, I got smart.

I applied to be part of a Health Care Advisory Group ran by my health insurance company. I went through the interview process and was accepted for a two-year term.

Last night, at my first meeting, I sat face-to-face with the people that I needed to talk too. I finally had a seat at the table.

I spoke on behalf of Cooper and all the other families out there.

I told them they have to make health care better.

They have to start taking a holistic look at healthcare. My son has 20 doctors. None of them talk to each other. There isn’t one ‘case manager’ that looks at his overall care. We go to a GI doctor, then a neurologist, then a therapist. And it continues. No one is looking at this kid’s whole health picture.

It’s ridiculous.

I told them they have to make it easier to manage healthcare. My son gets a minimum of ten EOB’s a week. So many bills. So much correspondence from different places. It gets to the point where I just pay. I don’t even know what I am paying for anymore.

I told them they have to change the way they provide healthcare. Not every kid, or adult, can sit in a waiting room. They can’t always physically go to the doctor. And they still deserve good healthcare.

I had the best discussions last night. This is how it starts.

Once you are ready, I want to encourage you to get involved. This may mean calling your elected officials. Joining the Special Education Advisory Council or PTA at your child’s school. Join a group. Take a stance. Whatever you want to do.

You have a voice in a world where so many don’t. For so many years, families like mine and yours were forced to keep quiet. We were shamed for having children with disabilities. We kept quiet.

It doesn’t have to be like that any longer.

And remember, we live in a secret world. Doctors, insurance companies, and our elected officials have don’t know what they don’t know. If we keep quiet, they may never.

The more we can humanize our stories and give a face to our issues, the bigger difference we will make.

Start talking friends.

Demand a seat at the table.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.