Sunday, December 21, 2014

People Are Crazy

(Disclaimer: I truly hope none of you take this personally or as an insult. I'm just venting and reflecting on my experience, and, well, people are crazy!)

When it comes to ASD, there are so many people who just don't know what it looks like. They could have read an article here or watched a movie there, or known some kid who is ASD. But they still don't honestly have a clue what ASD is or looks like. 

I felt a lot of judgement when I was talking about being diagnosed. People just simply didn't think that I had ASD. They really didn't. They wouldn't believe me at all ("You couldn't have ASD! You make eye contact! You have friends! You are married!"), they gave me excuses, ("Well, everyone is a little ASD in one way or another") or they would completely blow it off and not even address it.

With myself I found that few blew it off, but more often I was faced with all these excuses and disbelief! I knew something about myself, I researched it before I was certain, and I knew what I was talking about! Until you've actually been in the head of someone with ASD, you don't really have a right to say whether they do or not.

With my B, however, I have found more people to be blowing it off. I don't know what to make of it. I guess I haven't been up front with every single person about it, its a bit more sensitive because this is B's journey now. So out of respect for him as a young person, I am trying to be discreet and sensitive to how he may feel about me talking about him or whatever. It is difficult for me because I usually lean more toward being open and transparent. I don't typically like to hide anything, or to not share. But this isn't about me right now. This is about him. 

Anyway, those who do know haven't really commented on it. Is this because they don't know what to say? Is this because they don't want him to have a label? Is it because they doubt my parenting somehow? (Yes, insecurity is a part of the deal here.) 

When someone you know is going through the diagnosis progress, find out where they are at with this. Some people may be like me, and want to share with people they trust. Ask them questions and express your concern for them and their lives and journey! Most of all though, I don't think anyone would want you to just brush it under the rug and ignore it. I mean, if you find someone who does want you to ignore it, obviously respect their wishes. However, to me, it feels more as if you are denying that part of me, or my son, and that you either don't believe me or you don't believe that diagnosis is important or necessary. Those are your personal feelings, and you're welcome to them, but that doesn't mean you have to ignore this journey because you feel differently about it. This isn't about my parenting, this is about my son having a genuine brain difference, and we are searching out help for him to grow and learn and be happy and be able to deal with things like change and surprises or whatever it may be. We need these resources because my ASD is not the same as his ASD. My interests are not the same as his interests. You can't communicate with someone in Russian when they only understand Greek. So that's what we are doing. I hesitated a long time on diagnosis. I didn't want my child to be "marked" in such a way, and I figured I could deal with this on my own. (Once again, my independence is really strong here and I don't want to have to have help.) I thought that because I'm ASD, that I would understand his brain and be able to handle it. Sometimes I can, sometimes it is very easy for me to say "oh, thats just because hes ____ and thats ASD, and it's okay."

Anyway. Our first meeting went well! Brody was his splendid self, first shy and introverted, then he kinda went wild with the toys and everything else going on. I think he was running on nerves and the room was hot and new and everything. So I don't have to worry about him being anything but himself, and this is exactly what it's like always. It's also reassuring that he won't ever be anyone except himself, even around people he just met. That kind of thing is always encouraging, at least to me.

Can't wait to continue more on this journey. A week from Wednesday we start the "official" testing. Fun stuff. I remember it well. I can't wait to see the testing from an outside perspective instead of it being for me. 

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