By Kodey Toney
It’s Hard To Be A Saint
We had a great speaker last weekend at the Partners in Policymaking class. Michael A Mayer, PhD, spoke to the class about behavior or and communication with children with disabilities. There are many points he made throughout the morning, and I will try to write about them in future columns. This week I want to share something that he talked about called Saints vs. Experts.
So many times when dealing with a child on the spectrum I hear people say things like, “Wow, you’re a saint,” or, “Man I don’t know how you do it. I couldn’t deal with that.” When I hear this I appreciate their confidence, but there are many problems with these statements.
1. I’m no saint. In fact probably far from it.
2. It’s something you only know when you are faced with it.
As a father, or a person for that matter, I’m not a saint. I make mistakes. I yell at my children. I tell them to do the wrong things. I don’t have the necessary patients that it takes to deal with children most of the time, and I don’t know all the answers so I make things up as I go. I’m no different than most. I tend to let them play on the computer or iPad more than they should. The list could go on and on, but you get the point.
What I do is work hard to give my children a good foundation. This is why I do all the research. I read books. I surf the internet for answers. I work close with my local parent support group. I take a trip to Oklahoma City one weekend every month. It is the whole reason I started this column.
That doesn’t make me a saint. It makes me a parent who wants the best for my child.
I can’t say that every parent would do that. Trust me, I’ve known many parents who have left with children who have no physical or mental disabilities. I don’t know what their issues were, but I do know that I love my children enough to work hard to be a parent. It is work. It’s very hard work. For those parents out there who are single-parents; you are closer to saints then I ever will be.
The only difference between me and those other parents who don’t’ have a child on the spectrum is that I have to do well. I have to deal with my child’s meltdowns. I have to deal with bowel problems and OCD tendencies. I have to deal with IEP meetings and delays in speech. I have to deal with these things because if I don’t I fail. If I don’t I won’t be giving my child the best life he deserves.
That is the only difference.
This was not my choice. It sometimes seems that people want to say, “Oh, god gave you this child because he knew you could handle it.” Maybe so, but it was not my choice. That may seem harsh to some, but as I’ve said in the past, I wouldn’t change Konner. I wouldn’t do anything to make him different because this is what makes him who he is as a person. But, I wouldn’t have asked for a child with autism. This is why so many people are in denial when they get the diagnosis. You never ask for it. You never think it will happen to you. When it does though, and once you get into the parenting issues and get past the shock, you realize that it’s one of the greatest things that could have happened.
It doesn’t make me a saint that my child has autism. It does make me a better parent and a better person. If Konner hadn’t been diagnosed I would still believe that people with disabilities are just poor, helpless people. I would still believe that Asperger’s was just a funny word. I would still think of those loner kids as weird. And, I would still think that parents who deal with children with disabilities are saints.
Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at firstname.lastname@example.org