I read a lot. Books, blogs, magazines, pretty much anything. Since beginning our adventure, I seem to read obsessively about all things related to autism. There is a lot written about the loneliness being an autism parent. I didn’t really understand this in the beginning. I felt like everyone was so kind and so understanding, no one was isolating us, or distancing themselves because of R’s diagnosis. Now, about 2 years in, it is starting to make more sense to me. Its not about losing friends, its about the lack of understanding. Your friends and family are still there and still trying to be supportive, wanting to be there for you but they don’t always know what you need to keep an even keel.
R wanted to play sand volleyball with a friend/teammate last night. We had never been to this particular club’s sand volleyball events. My friend had and suggested that the girls do it together. I asked questions so that I could give as much detail to R as possible, as she does not like to try new things. Or things that are not part of our normal routine, court volleyball is, sand volleyball is not.
Well- I apparently did not ask all the right questions. The event was not what R ( or dad & I ) thought it was going to be. You could see the discomfort on R’s face. It was painful to see. She was so uncomfortable. We all thought that the point of the girls doing it together was so that ourgirls would stay together. They in fact got split up and R played with people she did not know. I know that she needs to get used to doing these types of things were she may not always be comfortable but this was not how it was sold to us. I would have prepared her for that possibility had I known. I casually said something to my friend about them being split up and she said ” oh yeah-I knew they would do that.” I tried to conceal my anger, frustration and disappointment while saying to her “that it would have been nice to know that.” I calmly explained to her that these are the kinds of things I need to know. I need to prepare R that I don’t know if its going to happen but that it is a possibility.
We don’t have the luxury of having things be a surprise. There is no place in our lives for that. Everything must be well researched and well thought out. I have to think 20 steps ahead and prepare R for as many possible outcomes as I can think of. I know you are thinking that that is not realistic and that she is going to have to learn to adjust. I know that,but right now wouldn’t you do anything to make your childs life as easy as possible?
This is not meant to be about throwing my friend under the bus but it is an eye opening realization of how unless you live everyday with autism, you just cannot understand what we go through on a daily basis. My friend doesn’t know that any tiny discrepancy in R’s understanding of the way she thinks somethings going to be, is catastrophic to her. How could she? All I can hope for is that moving forward she understands what R needs and thinks to give me all details even if she doesn’t think they are important.
I see where the loneliness comes from now. Its lonely because no one really can understand what the day to day is like. Its not that they don’t want to understand – I truly believe that they do, they just can’t.