I am feeling down tonight. I know I will have to run into some of you readers in the grocery store and it really makes me not want to write this because I don't want to people to think I am always feeling this way. There are moments when I feel down. I think that is fair to say about everyone in some way. Today is one of those days for me. I may not even publish this post. I am looking around the house and making note of how autism has taken over our lives in so many ways. There is a stack of books on my beside table with titles like "The Autism Revolution" and "ChallengingThe Myths of Autism", among others. Gone are the stacks of books I would pick up on a friend's suggestion or while browsing the bookstore." Our calendar is covered with Kate's upcoming appointments. Much of our conversations are centred around who will be able to take the time off work to take Kate to these appointments. Gone are the notes about swimming lessons and playdates. Our cupboard is full of vitamins and supplements and gluten-free and casein-free foods that we are trying desperately to get her to eat (autism parent's, you know their diet is limited on a good day.) God, do I sound like I am complaining about helping my little girl? Even as I re-read what I just wrote I am feeling guilty because I am essentially saying that Kate's autism is taking over our lives and it is making me sad. How awful is that? How sad she would feel if she knew I was thinking like this. I really don't mind reading and researching and fighting for Kate all day long. I guess, in some ways, I wish I didn't have to. I think the neurodiversity movement will jump down my throat when I say this, but I wish Kate could recover. I wish she didn't have these challenges. Yesterday when Alex and I were driving with Kate he told me how when he is driving her to daycare in the morning she will yell out "GO" when he gets to the stop sign at the end of the road. I made a joke about her getting her licence someday and being a crazy driver. He didn't laugh and when I looked at him I could see his face was so sad. I knew what he was thinking. Will Kate ever get a licence? Will she ever be independent? Kate has some language and we are so grateful for that. But, how far will she go? How come no one will say the words high-functioning to us? We have been throwing that term around at therapy and doctor appointments waiting to see hear it said back to us and it hasn't happened. What does that mean? I am too new in the game to understand all the semantics that are tossed about on the autism blogs, groups and sites. I am getting a sense that people are very emotionally tied to some terms used in connection with autism. I guess 'high-functioning' is that term for me right now. Kate is still so young. We are hopeful that she will gain the skills, once treatment begins, to live a 'normal' life. We struggle with thoughts that she won't. One of the shittiest things about autism is that you are robbed of the comfort you get in assuming your child will grow up and become independent and start a family of their own. I didn't even realize that this idea was a luxury. I know that not all neurotypical kids grow up to become independent members of society with little families of their own but I do know their parents at least can make that assumption when they are staring in their little toddlers face. They can take some comfort in the fact that they are born with the things they need to do this. I'm jealous. I know I should not be wasting time feeling sorry for myself and get back to working on organizing her treatments but it is just kind of pouring out of me now. I definitely have some weak moments and this is one. And now that I have brought you down I am going to cheer you up with this little slideshow of really cute baby animals. You're welcome. *Update: After I wrote this I came across another post in a great blog called "Life His Way". Check out that post here. It answered me in the nicest possible way.
Happy Mail to:
27 Wellington Row
Saint John, NB
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Grace and Kate's mom. (Shanell)