One role that I quickly learned after Brian's diagnosis was that of an advocate.
I joke with my sisters and tell them it's because I don't know how to shut my mouth.
Typically though I'm a shy and reserved person.
But bring up autism or make me think you did wrong by one of my children and there's no stopping me.
Last month Brian fell and ended up in the ER needing stitches. I was not impressed with the way they were unprepared for an individual with autism, especially with the rate of autism being so high (here in Maine it is actually 1 in 67).
I complained on facebook. I complained on here. I complained to family. Lots of parents reached out to me that they had very similar experiences with their own children on the spectrum. And that's when I realized just complaining would never make a difference, other than letting me blow steam when I needed to.
So I wrote a letter to the hospital detailing our visit and what could of made the visit easier for Brian. I tried not to point fingers, I just tried to educate them on autism and the difficulties that come with it.
In the past I would've just let it go. However, what good does it do for Brian and for all of the other individuals with autism if I don't say something? How will things change if we don't try to educate and advocate?
I received a reply very quickly from a patient relations coordinator who said she took my letter very seriously and would contact the Director of the Emergency Department. I was pleased with the reply and I wrote back reiterating that I was very pleased with the response time.
Today I received a letter in my mail from the hospital once again thanking me and telling me the steps they did following my original letter. The few emergency nurses who are trained in autism are presenting an educational program at the department's staff meeting, the emergency physicians are having a meeting on the topic, and the pediatrics office will be providing materials. Materials and resources will also be made available to all units at the hospital.
At the end of the letter they wrote, "You are an excellent advocate, not only for your son, but for all those with autism".
Advocating is a huge part of being a parent of a child with special needs and when done right is probably one of the most important roles we have. We're not just trying to make the world a better place for our own child but for all of the families that follow our path.