So as I mentioned in my last blog post I was in a meeting with someone I respected that was more than an acquaintance and less than a friend. We were talking about mobilizing parents in our states early intervention system which is called EarlySteps. This includes children with Autism and with other disabilities.
I will take the blame for part of this because I don’t remember exactly how I said what I was trying to get across at the beginning. Whatever I said I gave this person the impression that I was talking about parents of children with Autism being in ‘denial’. Specifically children in the zero to 3 age group. I hate that tern. The only term I hate more than denial is ‘non-compliant’.
I got a little upset because I don’t believe I or many of the young parents I meet know that their child has a Autism and choose to ignore it. I realized my child had a disability but did not understand how serious it was for many years.
I believe that many of the young parents I meet are in the same situation. They may or may not realize their child has a disability. Not because they choose to ignore what is going on but because they may not realize their child is not in the range they should be in.
Other parents know there is a problem but do not realize how large of a difference there is between what their child should know and be able to do and can perform. It’s not a choice it’s a lack of knowledge and maybe even a lack of being able to prioritize the significance of what is going on in their lives.
Well later after the meeting my friendly acquaintance and I had a chance to talk. He doesn’t see denial as an action on a parent’s part to ignore what is happening. He sees denial as a situation when everyone else can see the difference and the parent cannot.
That was definitely a paradigm shift for me. The majority of the time when I hear professionals say denial it is said with what seems to be sarcasm. But…taking ownership for my role in the world maybe not all professionals mean a parent is deliberately ignoring the problem.
I’m also thinking of how many people I have been annoyed with when speaking of denial. Wow….
How about you?
Which way do you think of the term ‘denial’? Does that word upset you too?
Monday, July 16, 2012
Thursday, July 12, 2012
I had a conversation with a person I respect that I will get into on a later post. Right now I'm trying to figure something out. What do you call those people that are quite a bit more than an acquaintance but not really a friend? People you may meet through work or who are providers of services to your child with autism or who are providers in other areas of your life. There should be a name for that person, not yet friend but more than an acquaintance. To just call them a friendly acquaintance seems demeaning. My social worker friend tells me that's why you should have clear cut roles that should not cross. If it were only that easy... What do you think? Please comment as I'm really curious.