Sunday, August 12, 2012

Like the First Time

As promised I’m going to bring you an update from my first day at the Partners in Policymaking program from Saturday. Let me start by saying that I’m sure this is going to be a great experience. The group of administrators seem like an informative and no-nonsense group that are passionate about their jobs. They are extremely knowledgeable about the subject of disabilities advocacy, and I’m looking forward to the next eight months.
One thing that was interesting was the diverse group that is involved. The students include about 50 percent parents of children with disabilities, about 30 percent where students with disabilities, and a few people who are just interested in helping others. This will help us all understand issues on different levels.
While I don’t remember all of these lessons learned, I will share what I remembered to write down.
One thing that was said was, “You need to be careful of the way people perceive yourself.“ We need to get over the fact that we are parents of someone with a disability and just remember that we are parents. It just happens that our child has a disability. I know this is confusing a little, and hard to do. Erin Taylor, the presenter, was much better at explaining this, but the point was that we all have issues, get over it and help your child with a positive attitude. So when we talk about this we tend to say things among others that could actually be hurtful. For instance, Konner is at a very high-functioning level of autism. However, if I’m talking to other parents about him who have autistic children, when I say that he is “high-functioning” does it mean that their child is “low-functioning” just because they are not as verbal, mobile, or social as Konner? This is a hurtful term to some parents, especially those you have a recent diagnosis.
Be careful of what you say and who you say it to.
You should also be careful of what you say around your child. Many of us are probably guilty of this, though I’m not sure that I’ve ever said anything hurtful, I’m also not sure I haven’t. If you say things out of frustration you sometimes forget that your child is there. Especially when your child is usually quiet. What you need to remember is that regardless of whether your child is verbal or not they do understand what you are saying. Many people forget that our children are extremely intelligent and perceptive. If we talk about how much of a burden they are on our lives that’s not going to be good for their self-esteem. This included talking about taking them to therapy, financial issues, IEP whoas, etc. Just be cautious.
“All parenting is a challenge!” This was a comment by Taylor that hit me. She’s right. This is something that we all tend to forget. If I’m being honest Kruz, my three-year old neurotypical child, presents more of a challenge everyday than Konner does. Konner can have his moments and meltdowns, but Kruz is a non-stop bundle of energy. Taylor explained that she has five children, each day she knows that one of them is going to annoy her; it just depends on the day which one it’s going to be.
I really wish that I could share the information the way it was presented, but it’s going to be hard to get all this information to you.
I know that this is only the first day, but I’ve already learned some things. I just hope that I will be better at sharing the information in the future.

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