eSpecially Ben

It's been a long day with little sleep - can't blame the kids or the husband (he yelled at 1am for me to come to bed). I'm not good at comebacks but later I did think, I should have said, "Did Mrs. Einstein yell, 'Hey Al, come to bed, it's getting late and that stuff you're working on can wait.'" I was up until 3am working on this blogsite. It has been in the works in my head for a long time. And for whatever reason, I had the courage to do it. Perhaps it was last night's book club discussion about "Loving Frank." Perhaps I was just ready. So thank you to anyone out there who has read some of my postings. It is encouraging to hear your comments, ideas and thoughts. This is all new and I will use the words of my good friend Tracy, "Trust the process."

When my son was three, he saw a psychologist for a consultation. She told me about a family who had a 27 year old daughter with Down Syndrome, living at home. After a discussion with the family and some observation, she determined that the daughter could be doing about 30% more on her own. At the time, I took the story at face value – a therapist sharing a story about another family to try to break the ice, make me feel comfortable. After the session, the psychologist’s words kept coming back to me. Was the story a gentle way of saying that my son too, could be 30% more independent? My mom shared a story with me several years ago about how my aunt asked about her parenting philosophy. My mother had responded that from the moment a child is born, it is a parent’s responsibility to help that child to succeed on their own. This comment has stuck with me. More than a year ago, one of my son’s teachers asked me what I saw Ben doing in the future. I was dumbfounded - he was 4 ½ at the

Going out with a child who has disabilities can be an emotionally, physically and mentally draining event. Where can I park? Do they have accessible restrooms? Will people stare at us? What if my child decides to make a lot of noise? How will I get my child around? Because of these questions and worries, I am not surprised that there are always so few children with special needs out at Discovery Place, Imaginon, Nature Museum and all the other places Charlotte has to offer. It can be a terrifying thing to do! The first few times I took Ben out in his walker, I fought tears the entire time – tears for being so proud of him and for being scared of the possibilities, good and bad. In the 6 years that we have been taking Ben places, we have had one uncomfortable situation where a parent did not address their child’s rude comment. Other than that, we have many children come up and ask questions about Ben, his walker and why he is the way he is. I always make it a point to thank the child