In my personal life, discussing disabilities is resigned to mostly family. When I’m with my friends, it’s hard to discuss blindness and autism and how it affects me, Eddie, and our family. When I’m sitting on the bleachers at my daughter’s basketball game, and someone asks about Eddie, I often say, “He’s OK.” Or maybe I’ll swap out “OK” with another generic adjective like fine or good. Then, I’ll quickly change the subject.
The reason I don’t typically go into too much “Eddie” detail is because my daughter’s game isn’t really the place. I spend a lot of my time NOT discussing blindness and autism, because it isn’t fair to my friends. They want to talk about the things we have in common; children in the same classes, the local sports, and who’s going to book club. Those are things I care about to, and those are conversations I enjoy having.
However, probably half a dozen times a day, I just really want to take about Eddie in great detail. Even my husband cannot handle how much I want to talk about Eddie…and blindness…and Autism. That’s why I write for FamilyConnect and that is why I live for conferences like the AFB Leadership one that is coming up the end of the month.
This week, I was blessed with two opportunities to discuss Eddie, and it was certainly the place for it. First, I was asked to be on a panel of parents raising children with disabilities, and also adults who were impacted. I was able to speak openly and honestly, and not fear how it made me look, or sound, because these people were there to listen to us simply talk about our lives.
The second event was a dinner and auction called A Knight of Hope that is for The ISAAC Foundation. It’s a local charity that gives grants to families affected by Autism to pay medical expenses that insurance does not cover. We are luckily recipients of their generosity. Other friends of ours raising a child with Autism introduced us to the organization, and many of our friends attend this event every year.
A woman spoke about her journey through diagnosis and intervention for her daughter who is Autistic, and it was extremely touching. It also opened a dialogue for me to talk about our own journey with my friends. Because it was the place for it, I could share without apology, awkwardness, or insecurities. Autism was the topic of the night, and I needed to talk about it with my friends…even if it was all about me.
We do have great friends and they are very supportive. So supportive that my best friend allowed me to steal her husband all night to complete a scavenger hunt at the auction. My husband was out of town, and I can’t resist a fun game, especially for an awesome charity. As I’ve shown in this picture of us with a knight statue, we were having a lot of fun…and it was the place for that, too.