|I love this picture of Ben doing the zip line at a birthday party. It's a great example of what can be achieved with a little bit of support.|
At first glance, the words acceptance and advocacy seem to have opposite meanings.
In fact, the words are more like two sides of the same coin.
I accept that Ben’s autism is a part of who he is. I don’t believe that I can remove the autism without also removing the essence of who he is.
I advocate for services and supports to help Ben to be successful, confident, and independent.
I accept Ben’s differences, his quirks, and his unique view of the world.
I advocate for training opportunities that will allow teachers, his classmates, and other adults in the community to understand and celebrate these differences and to recognize the many ways that we are all the same.
I accept that Ben will learn at his own pace and in different ways from other children.
I advocate for supports in his IEP that will allow him to demonstrate his learning at his pace and in the ways that meet his needs.
When Ben was first diagnosed with autism, I will never forget what one of the evaluators said to me.
She told me that I am in a unique position to be an advocate, not just for my son, but for many, many children who are like him.
I never would used the word advocate to describe myself.
I am by nature a quiet person.
I was the type of child growing up who hated confrontation. I found it easier to agree with others rather than voice my own opinion. I often swallowed my own point of view rather than cause any potential conflict.
I thought I was being polite when I kept quiet, but I know understand that, really, I was actually being compliant.
I’ll say it again. We think we are being polite when we agree with a differing point of view but we are actually being compliant.
Our silence is actually our tacit agreement.
Compliance does not bring change.
I was never taught the fine art of advocacy in school.
I have grown into my role as an advocate over time.
Luckily I’ve had plenty of practice advocating for other people’s children as a teacher long before I needed to become an advocate for my own son.
Here are some things that I believe about advocacy-
I believe that advocacy does not need to be adversarial.
I believe in a team approach where every voice is heard.
I also believe that I can listen but also respectfully disagree.
I believe that healthy teams bring up varying viewpoints that lead to positive change.
I believe that almost all adults want what’s best for the child and are doing the best they can given their level of understanding and the parameters that they must work within.
I also believe that just because something has been done a certain way for years doesn’t make it the right way.
I believe in thinking outside the box in order to find solutions that are best for kids, not simply convenient for the grown ups.
I believe in asking the tough questions when necessary.
I believe in the power of good data.
I believe in researching the law and understanding my child’s legal rights in order to ensure that accommodations are being implemented fairly and with fidelity.
I believe in being an active member of my son’s IEP team.
I believe in calling meetings when necessary to make plans or to make sure everyone is on the same page.
I believe in being the voice for my child until the time when he can become an advocate for himself.
I believe in the power of listening and truly hearing what others have to say.
I believe in taking my time before making any decision that will impact my child.
Beyond advocating for Ben, I also believe in advocating for the needs of all children and autistic adults. So much needs to change.
It is not okay that children are being forced by their “friends” to eat sticks and twigs.
It is not okay that children are being subjected to inhumane “cures” such as bleach treatments.
It is not okay that children are being locked up in cages.
It is not okay that children are being thrown off bridges to their deaths by their parents.
It is not okay that adults are treated as “less than” or invisible or made to feel as if their very presence in this world is a burden, especially by organizations that should be helping them.
So much still needs to change.
I accept the person who my son is.
I advocate for his rights and the rights of others.
I hope you will join me.
Together we can do more than I can do on my own.
It’s not just about my children.
It’s about all of our children.
It’s about changing our world.
It begins by having the courage to speak for what is right.
I pray that you will find your voice and inner advocate.