January 31, 2018 Mom

Adjusting to our adventure with Aspergers

I have decided that my New Years resolution is going to be updating this blog more. Maybe so that it helps others and maybe because it helps me. Either way I want to commit to sharing our adventures with aspergers more often.

It’s been a while, so let’s catch up. I feel like a lot has happened since I last posted.

As Dad mentioned last week, we had a bit of a tough week, when someone she trusted with very precious information, felt the need to tell other kids at school that R had Autism. I am not sure I have ever been more proud of R than I was then. Having a group of mean middle school girls taunt you with that information had to be difficult but she handled it well.

R, obviously,now knows about her Aspergers. The time came that we felt it was important for her to know. We, as her parents, had adjusted to our adventure and there were some things happening in her life that made me fearful she was going to find out from someone other than us. ( That’s a whole separate post!)

That may have been one of the hardest conversations I will ever have. Her reaction was what I thought it would be. Confused and upset, there is no easy way to tell someone that information without making it sound like something horrible.  Once she sat with it and got used to it, she embraced it. She asked for books to read about Aspergers and she asked questions. She devoured those books. She’s not a big reader, but she devoured those books.

One afternoon she was particularly quiet and I found her hiding in her closet with one of the books, sobbing. My heart dropped. I asked her what was wrong, had something happened? She kept sobbing and it was hard for me to understand what she was trying to say. Eventually, I heard “ Why do I have Aspergers? Why did I have to get it. It’s not fair” I don’t think I knew how bad a heart could break until that moment. Mine was shattered. I tried to comfort her but she doesn’t like to be touched, especially when she is upset. I explained to her that we did not know why she had Aspergers but that it was nothing to be ashamed of. It meant that she while had things that were hard for her to do, it also meant she had things that she could do better than other people. At this point we decided that we needed to take a break from the books. I don’t think she has picked one up since but I know she reads things on the Internet.

I think the best thing that has come of her knowing is that she is more in touch with how she’s feeling about things and is able to recognize things that are difficult for her. Like talking to new people. She has told me that she wants to but that’s she just can’t do it. She needs someone else to talk to her first. She used to want to always shop in Forever21 and I would dread it as I knew it wouldn’t end well. It’s too crowded with way too much stuff and the music is too loud. She now understands why she can’t shop in there and she doesn’t. She refuses to step foot in there. She is figuring out how to adjust different areas of her life to Aspergers,without letting Aspergers define her. She is  figuring out that works for her and what doesn’t work for her. Its nice to be able to be open and frank about it, that allows us to point things out to her and teach her some social skills in the moment.

Last week R told me that she wished she didn’t have Aspergers. She wished we had never told anyone, including her teachers. R feels that people who know that she does underestimate her or think shes dumb. I explained to her that no one thinks she is dumb. That when people are constantly underestimating you, you have such a great opportunity to prove them wrong everyday. In my opinion, the best thing we could have ever done for her is to tell people, to educate them. I hope someday she understands that. I hope someday she realizes how hard we fought to help  not only her but anyone else facing a similar adventure.



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Comment (1)

  1. JB

    You’re doing a great job of educating, not only others, but your daughter as well. I have definitely learned from your experiences and have tried to use that knowledge when I interact with others on the spectrum. Please keep the blog going. It’s really helpful to have a small bit of insight into your lives.

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