Last week Pia Prenevost -- blogger, developmental psychologist, NICU nurse, and full-time advocate for her son -- posted "
An Open Letter to Special Needs Professionals" on a blog called
The Thinking Person's Guide to Autism. If you are a parent, teacher, therapist, or anyone who knows someone with a family member with special needs, I encourage you to read her letter. It's particularly appropriate as the school year begins. It reads in part:
"I just wanted to...caution you. Or warn you. Please, tread carefully. You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well ... you see that heart? The slightly broken, definitely bruised one? Yeah, that’s my heart.
"Now, I realize that as you look at me you might see a confident parent, or an angry parent, or a happy-go-lucky parent. You might think that I understand everything, or nothing, or that I have all the experience in the world because I have done this before, or that I know the rules, or that I don’t know the rules and that is for the best. You might believe that I am high maintenance, or overreacting, or maybe neurotic, or disengaged and uninterested. Or that I don’t really care, or maybe I care too much...
"Some of 'us' parents -- the ‘special’ ones -- can be a pain in the ass. I know that. We know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things."
Yesterday Pia posted a summary of reactions to the piece on her blog,
The Crack and the Light. Thanks for sharing, Pia.
A recent article from Agence France-Press explores how Facebook, email, online chats, and other technology are helping to crate :a virtual world of equality" for people with disabilities. Pacific Diversified Services, an organization that promotes inclusion, trains clients in basic computer skills and to safely use social networks. "It really adds to their sense of acceptance in the community," the program's director says.
