This blog is about living with my son who has multiple disabilities caused by some whacked genes resulting in a form of muscular dystrophy known as an alphadystroglycanopathy. He’s currently enrolled in a study at the University of Iowa and we are awaiting the announcement of which particular genes are whacked. This process started in February of 2012, so yeah, it takes some time. Before that he had a diagnosis of Ataxic Cerebral Palsy. He doesn’t walk or talk and is entirely dependent on others for care. His official IQ is pretty low but we don’t believe it because he laughs at our jokes. Of course, I am the sort of mother who thinks all her children are geniuses of one sort or another. Given the differences in his neurology, his awareness of others and sense of humor are definitely signs of genius.
My family is artistic and geeky, except for the Oldest Daughter who didn’t inherit the nerd/geek gene. She is a fabulous hairdresser and definitely has a flair for design but, alas, is not a Whovian. Although she does know everything about the X-Men and Avengers because she grew up under the influence of Lovely Husband. She has her own family and has gifted us with BamBam, her young son who does nothing but throw balls at us all day. My Lovely Husband is the Main Caregiver in the family. He does an incredible job of taking care of Darling Boy but often thinks he doesn’t contribute enough to the family. Darn that pesky patriarchal system we live under that equates caregiving as a woman’s job. Darling Boy gets sick a lot and we need someone who can be available at all times to take care of him. And then there are the Twins. They are our youngest daughters and have definitely inherited the nerd and art genes. They love My Little Pony, Dr. Who, Pokemon and draw all types of anime. Their idea of a good day is to play on electronics, draw and oh, maybe a trip to the mall. Lovely Husband often says that Darling Boy chooses to be non-verbal so he doesn’t have to deal with all the estrogen floating in the air around here.
I called this blog Special Needs Reality TV because I think those of us living with children with special needs should have our own reality shows. It would feature different families and show what it’s like to go through a meltdown in public. Or maybe going to the E.R. after a seizure. You know, things that are actually real.
I do love certain reality shows. I loved Dance Moms until I figured I was contributing to child abuse by watching it. I can watch Guilianna and Bill for days, I have no good reason for this. Naked and Afraid is pretty fascinating. But my contention remains that living in the world of caring for special needs children is the ultimate adventure in drama and good times.
Hope you enjoy my little corner or reality.