Funny thing about being on the ragged edge of exhaustion, it gives you the super power to say out loud what you should probably keep inside your head. It was one of the first days back to summer school for Claire. Chloe and I were walking with Claire and her aide to the back of the campus where her class was. On the way, one of the adults who knew her from the previous school year said hi to Claire. When Claire looked at the lady who was greeting her the lady said, “Good looking Claire!” and in that moment the little filter that keeps the thoughts inside my head broke. I kindly looked at the lady, smiled and asked her to never again praise Claire for looking at her. I explained that it is something that she does easily as long as her body is letting her control it. She is 6 years old and you would never say to a typical 6 year old “good looking”. All of the staff from all of the different special ed classrooms stood silently as if some superhero had just frozen everyone except for me. Claire’s aid looked down and Claire looked up at me with the biggest grin, even Chloe help still as I spoke. I quickly tried to back pedal and also told the kind lady that I knew that she meant well and reiterated that I just don’t want people to treat Claire below her level. When I go order coffee and pay, nobody pats me on the back for remembering my money, it is expected. I know that the children affected by rett syndrome aren’t the most consistent group of people. We rarely have the same successes two times in a row. None the less, I am now insisting that we raise the bar for Claire. I have always tried to advocate for Claire to be treated as somebody who was severely physically impaired as I feel that is the best way to describe her. Yet, I have stood on the sidelines as people have cheered her on for every time she has peed while sitting on a toilet for three years. Maybe it was the good stuff from conference or the mental breakdown in the airplane. Maybe it was Claire rolling her eyes at me for the umpteenth time as I praised her pooping when I put her on the toilet. I just think that I need to have bigger dreams for Claire. Not just that she might be able to look pretty and smile when it is requested. Rather that I honor her by talking to her just like I would any other girl her age. Also that I will honor her by teaching her everything that I hope to teach her sister when she is 6. The world is really big and I think that I am finally ready to risk it a bit, to put it out there and expect that she will be able to achieve the unachievable, that’s only fair, right?
I absolutely loved the opening talk at the congress that was given by a parent, Mickie McCool. You can link to it here, it will ask you for a name, you can type in anything and don’t need to fill the rest of it out. It is 18 min. of inspiration. In her talk she tells the people good eyes, good looking and then assumes that they just must not be that smart. That is what happens every day to our children and it is just not alright.
Note: After I posted this I was rereading it as I heard Claire belch at the breakfast table in the other room. Jared said, “That was a good one Claire” as her burping keeps a host of other, less fun problems away. Chloe quickly piped in, ” No Dad, she has to say excuse me!” which is the response that we would expect from anyone when they burp. This to say, I am speaking as much to myself with this post as I am to the rest of the world. The only people who might not find anything interesting with this concept of higher expectations would be the amazing siblings of special people, they already get it.