The Way I Am

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My last post was about disagreements with NTs that leave me feeling inadequate. Today, I had a great conversation with a wonderful set of moms who I don’t always agree with and who sometimes don’t agree with me. To me this is significant because it was a support & networking meeting of other parents with kids on the spectrum. I like to go because I do my utmost to show respect their view points as they often show the utmost respect to mine. I want to thank them for this because in the Autism community, as we all know, there are so many sides, that if there is constant in-fighting, we never can show others what we all know.

So today, I want to address the people who don’t always show that respect, for whatever reason. I’m doing this because I’ve been trying to pinpoint for so long what it is that causes these rifts among our groups.

  1. I am not disagreeing with you because I don’t care. In fact, we all very much care about the future for ourselves and our children. If we did not, then we would not be so involved. The people who do not care so much are not the ones present, but those who remain outside the circle for whatever reason. I care so much about the future of those with Autism because I have been where they are at now, and do not want to see the heartache in their lives that I experienced in mine. I was homeless. I dropped out of college. I became a single pregnant woman. I went in and out of mental wards. And I have 2 years of my adult life that I don’t remember over the 11-12 yrs of my childhood that I have no memory of. I have been there, done that, and I will do everything in my power to make sure that doesn’t happen to a single other person. I don’t talk about these things because they are hard memories (or sometimes the lack thereof) to handle. But if you were in my position, having gone through what I’ve gone through, wouldn’t you do the same thing?
  2. I am not arguing with you because I like to argue. I hate arguing. It’s emotionally, mentally and physically draining. I argue for the greater good, because I feel all the pain and suffering I go through arguing, if I can make one person understand, I have done my job. My husband has had to cradle me in his arms on numerous occasions because I literally cannot handle the after affects of these disagreements. If I had no support, I would be in a ball in a corner, but I’m lucky to have what so many others like me don’t have. Support. I wish I could thank my husband enough for what he gives me. And I know that this doesn’t excuse the arguing. In fact, if I knew how to, I’d stop the arguments. I just don’t have that, and as much as I try to learn that skill, it’s just not there yet.
  3. Be understanding that I don’t have your theory of mind. If you can forgive your own child’s differences and difficulties, please try to do the same to me. I know how difficult that is as we all try to fight with professionals, and teachers, and administrators each day to make them understand our children’s invisible disability. It’s hard to look past my typing and demeanor, my physical appearance of togetherness, to see that there is a disability in there. I stay in my comfort zone, where I  know that with the supports I have in place, we can pick up the pieces.
  4. Please don’t tell me what path I should take with my kids.We are all different, and we all do our best. I’d especially like to ask that you don’t keep telling me what path to take when you can see my path is working for my kids. I chose the path I did because of what I said in #1. If you would like to understand more about what we do each day for my two boys, and can see the progress they have made, please do ask. If you chose not to take that path, that is fine. But in the end, your path is not working like you expected, please refer back to #3. I cannot understand why you continue to tell me to chose a different one, when my path is working and yours isn’t. I’m not saying you’re not doing enough, or that you need to switch to my path, I’m just suggesting you look at what you’re doing to figure out why it isn’t working.
  5. Helping Autism is not a sprint, it’s a marathon. Someone I know keeps using this phrase, and I keep picking it up. But it really is. The needs of an Autistic individual are always changing, and you need to keep looking at what you’re doing so that you can change accordingly. If your path (#4) isn’t working, find people who HAVE been successful on your path and get their feedback. I know that this is not what I’m ‘supposed’ to say. I’d much rather everyone take my non-evasive way, yes. But if you chose not to, there are those who have been where you are, and have had children come out on the other side with good, great or brilliant results. Find those people. They can help guide you on your road. And if at once you don’t succeed, try try again. But always remember, the sign of insanity is doing the same thing the same way every time and expecting a different result.

I hope this has helped some of you understand me. And for those who are parents on the Spectrum, I do apologize that this was not as useful to you as it was to those from the outside looking in.

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