I don't mean to do it. I get tired of hearing myself sometimes. I can effortlessly guide any conversation back to the topic of autism and I know it must drive you nuts. It's kind of like when you have your first baby. You can't help but talk about that baby because your life is consumed with all things baby. You go on a date with your spouse and you spend the evening talking about your baby. It's kind of like that.
Alex and I have to make a concerted effort to NOT talk about autism when we socialize but we inevitably end up there at some point during the evening. I cannot tell you what a relief it can be when someone asks about it. It allows us that release and offers us a chance to explain a little bit about Kate. It is the constant over-explaining that I do that probably makes us less than popular at parties :). Let me give you an example:
Are you guys going to take the girls to see the fireworks tonight?
What I say: Fireworks! That could be a sensory nightmare. What kind of accommodations would we have to make to allow for that? I wonder if we could get her some headphones? Maybe she would love it? I would hate for Grace to have to miss out. How awful would it be to leave Kate home? Etc.
What I should say: I'm not sure. We might see you there. (Our friends get it. They have read every word of this blog. They ask questions. They pay attention. They don't need my constant extended answers, but they often get them)
Let's take the kids out to eat tonight.
What I say: Kate only eats a small number of foods. She certainly won't eat anything off a restaurant menu. She may have a hard time looking at the food we order. Maybe I could bring her meal with us? I am not sure I can handle both of them alone in a busy restaurant. Can we do it when Alex is free, so he can help? Can we sit in a booth because it is very difficult to keep Kate seated if she sees an escape route. I may have to leave early. Etc.
What I should say: Sure, I may need a little help, but let's do it. (Our friends already co-parent everywhere we go. So, if we have 6-8 kids with us at any given time the children know they any one of the adults is the authority and everyone helps out everyone else. Still, I tend to verbalize my fears.
Friend: Do you guys want to go see a movie on the weekend?
What I say: Maybe. We'll have to see if either of the grandparents are available to babysit because we can't exactly use a sitter. I am not sure there is a teenager in the neighborhood that would be ready for Kate. It would great if there was an agency that specialized in special needs sitters? Etc.
What I should say: Sure, let me try and arrange a sitter.
I guess I could go on and on about how we talk too much about the accommodations our family may need to make at times. I wish I could save it for this blog. After all the people that come here know what to expect. We often spend a good portion of our week managing therapies etc and you can read more about that here but for some reason we have a really hard time leaving it all behind when we socialize. I hope I don't drive you too crazy and I hope you understand that we are only a year in and we are still stumbling around trying to figure this all out.
Before I get some comments reminding me how important talking about autism is, please know that I know this. I dedicate a lot of time to this blog to keep that conversation going. I just think that in our real life we need to find a happy medium.
Thank goodness for patient friends.
Grace and Kate's mom. (Shanell)