I know how hard it can be to know what to say to us about Tanner. I can understand that and sympathize. We often get "how is Tanner doing?" To which we usually reply with "he's fine". I will usually go a little deeper with certain people because even thought they may not know how to ask, they want to know if his seizures are the same, better or worse. Has he been "well" lately. Is he still enjoying school. So i'll give some details, even though it wasn't asked. knowing what to ask can be a challenge and I get that completely!! The topic of using or not using the word "retarded" has come up lately too and Brian and I have somewhat different thoughts on it as do some other special needs parents. But words can affect people in very different ways depending on the context in which they were used. I wish that word were erased from the dictionary completely, but it isn't. When we were growing up, it was ok to use that word in a statement such as "How can the Cheesecake Factory run out of plain cheesecake? That's retarded." FACT: those words came out of my mouth recently. I am not in favor of the word but when you grow up using it, sometimes it comes out of your mouth and you don't even realize it. I'm not going to cry myself to sleep because I used a word I shouldn't have. The fact remains that I was also raised to be kind and loving of ALL people and ALL ages. I would NEVER use that word in a derogatory way towards a person. Does that make what I said right or wrong....that's an individual opinion. I've had lots of things said to me while in the presence of Tanner that I found inappropriate and we've been stared at a lot because we have a "bid kid" in a stroller, but I can overlook all of that. Again, we are not here to get mad or start fights or cause scenes. We are here to educate and raise awareness. So I printed out informational business cards for Tanner that explain who he is and what his disorder is and we politely hand those out in certain instances. Last week something was said to me that I just can't get over though...
While at my companies National Sales Meeting, I ran into someone who I used to work with but she was transferred to a different part of our company a couple years ago. She knows all about Tanner, is not a mean spirited person and I'm sure meant no harm to this, but when asking about Tanner, she said to me "Is he still with you"?
I've been asked what the life expectancy is for kids with CDKL5 and personally, although that's a hard question to answer, it's still educating people about CDKL5, so I don't mind answering it. but THAT question was out of line. I was in such shock that I simply said yes and looked away and when she left, I continued to cry all night long. (until waking up the next day in the anger phase, wanting to punch her lights out).
I want to raise awareness. I want to educate on Tanner and CDKL5. I want to answer your questions. I know it's hard to always know what to say and 99% of the time we can let some dumb shit go. I've said some dumb shit myself and meant NO harm by it. BUT please....just think before you speak. Asking me if my child is basically alive or dead is NOT OK!