The Mom’s Advocacy Game
by Sarah Lopez, OCPS ESE Parent Liaison

First Quarter:
It has been my experience, that we – mothers of children with disabilities – get involved in advocacy to better the current situation of our own child. This is an excellent place to start. This particular point of origin provides us with the inspiration and passion to move forward.

What could be more motivational than helping your own son or daughter? Or, in many cases like mine, your own children? We get involved initially because we want to protect our babies. We want to ensure their future success. We want to do it for them. We somehow found out that they have rights, and you better believe we are going to make sure no one violates them.

So what do we do? We go to trainings. We go to conferences. We surf the net. We consume every piece of information we can get our hands on regarding our child’s disability, the Individuals with Disabilities Education Act (IDEA), and more recently No Child Left Behind. We become one-woman promotional campaigns for Reed Martin and Pete Wright. And of course, we can recognize all of our children in The Out of Sync Child.

We ride the emotional teeter-totter between our children being “fixed” and “cured” and growing-up to lead lives without disabilities, to seeking the advice of financial counselors for special needs trusts because we know our children will never be able to handle their own affairs. One day, we tie their shoes for them because we feel sorry for them. And the next, we ask them to tie their own shoes because when they grow-up, no one will be there to do it for them.

Second Quarter:
Then it happens. When the timing is right, and we realize one more bumper sticker on our car would look ridiculous, we hear the magic words – systemic change. Eureka! The clouds open and we hear trumpets calling from the heavens. We finally have found the one thing in the world to solve all of our child’s problems. Or better yet, the world’s problem with our child.

Creating a better place for ALL children with disabilities will in effect, help ours. This is the key. This is the secret weapon. This is what will stop me from having to worry about the next teacher or the next therapist, and fighting the same battles all over again, and again, and again. And our children are going to be adults one day, so we surely can not stop at IDEA. We then begin to advocate for the transportation disadvantaged, supported employment and consumer directed services.

Our world changes from being homeroom Mom, to attending Individual Education Program (IEP) meetings with other Mom’s, who have yet to discern the big picture. The world needs us. Our child just went from being our child with disabilities, to being only one of the ka-jillions of children with disabilities that require our immediate assistance.

Half Time:
Someone, typically a spouse or another family member, points out the irritating fact that we do not spend as much time with our children as we used to. They tell us that we are missing the trees for the forest. My personal favorite is when a wee voice says, “Mommy, will you be home tonight to tuck me in? Or do you have a meeting?” Or better yet, “Mom! Why didn’t you bake the cupcakes for the party we had at school today? Mom? Like you said you would last week when you were on the phone and I asked you? And you said you would then Mom? Remember?”

Third Quarter:
For the first time, we begin to see the adults with disabilities that sit with us on committees as something more than our child in a big person’s body. We listen for the first time to “Nothing about us without us!” instead of just hearing the words. We ashamedly learn that adults with disabilities might have more insight into our child’s future than we do. If nothing else, they have a perspective on it that we will never understand. And for the very first time we realize the truth, we do not have a disability.

Is this new reality any justification to stop helping the community? NO! Is it reason to stop trying to create systemic change? NO! But we take a step back, and stop positioning to head the committee. We now want to be a supporting member to the adults with disabilities who are the only ones who really know.
For once, we can take a breath. The burden has been lifted from our shoulders. We can help and do our best, but there are others already there doing it, and there will be others there doing it when we are gone. It doesn’t have to be all about us anymore.

Fourth Quarter:
What began as a goal is suddenly met. Plans we work on actually come to be product. That legislator we campaigned for really was voted in to office. The people at the school actually smile when you visit. During this game, your best cheerleader learned to tie their own shoes.

When did that happen? Who taught them that? And, aren’t I the worst Mother in the world for missing it? So what do you do? You stay up until midnight to bake cupcakes for school. And tomorrow, you volunteer to be homeroom Mom. And, you reintroduce yourself into your own child’s life.

You finally take the well deserved rest you need, because you and I both know what happens next week… another game starts.

Sarah is a MOM - Mother On a Mission. She has three perfect children, Jose, Eleana, and Isabel. And, she sits on as many committees as her children allow. It’s important to Sarah that you understand, although she may be in the first, second, third or fourth quarter, and sometimes halftime, she is always in the game.