I have not exactly been private about our experiences in the autism arena. For example, I write down every thought that crosses my mind in this blog. Even still, being in the newspaper seemed a little scarier to me. Even though I check our stats and I know this blog has tens of readers :), I was feeling very exposed while I waited for the article, we were interviewed for, to come out. I adored the reporter and that wasn't my worry but I was worried that people might see the article as a 'woe is us' type of story, where we complained about how difficult it was to raise a child with autism. This is certainly not the impression we wanted to make and I think the article does a good job of painting a fair portrait of a day in our life. We sat down with the reporter for over two hours in Alex's office. Looking back, we likely overwhelmed her with all that we had to say. It was almost as if it was bursting out of us. "Autism is NOT a mental illness. Autism does not equate violent behaviour. The sky is the limit for Kate and all children with autism. It is ludicrous that our province would posit that there is only one 'evidence-based research' approved therapy." And on and on and on. The reporter asked for 'a day in our life' and we found it almost impossible to talk about a day in our life without talking about all these emotionally charged and inherently political topics. She was kind and patient and she listened to us talk over one another trying to get the information out. It would be impossible for any one piece of writing to detail the highs and lows of this ride. I guess that is why I am keeping track here. Ultimately, I know that any attention drawn to the cause is good. We can't afford to have misinformation out there. We need to set the record straight. And, while it is true that even those of us raising children on the spectrum disagree on many issues (see Hey ABA, and She's Flappy When Happy) we would all agree that the world should know how amazing our children are. This issue is so personal to each family and it can be difficult to talk about. Every experience is unique. Every family is on a different path. Well-meaning people can sometimes say the wrong things. (I once brought up the Red Sox dismal post-season at a funeral because I didn't know what to say.) For example, recently, when I was in the hardware store picking out paint for Kate's therapy room the nice lady working was trying to sell me on purple. I explained to her that it was not for a little girl's bedroom but her therapy room and the colour was meant to be soothing because she has autism. Her reaction was pretty intense. She told me what a tragedy and a shame autism was. I had to ask her if she thought I had said cancer? Don't get me wrong, it isn't easy for any of us. Some struggle more than others but priorities please! If you get to tuck your babies in at night then you have not experienced tragedy. See Rockstar Ronan to get your priorities straight. I visit every single day. So, all in all, we are happy with our newspaper debut and we hope people see that Kate is not a set of behaviours to be dealt with but a real little girl with an amazing big sister and a family trying to pave the way for her.
Happy Mail to:
27 Wellington Row
Saint John, NB
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Grace and Kate's mom. (Shanell)