This really got to me

Yesterday I was at a meeting.  There was a person attending that I did not know.  He was new to our congregation, but someone that our pastor has known for many years.  He is young, unmarried, and has no children (I think this is important later.)  I instantly liked him.  He fit in very well with our group and I thought what an asset to our church.

I found out that he had worked as a teacher’s assistant with autistic children.  Of course my immediate thought was, “WONDERFUL!”  Our pastor asked what is autism.  (Remember  I lead a parent support group at my church for parents of children on the autism spectrum and ADHD.  I had no idea he didn’t know specifics.)  I was going to go into my explanation, but my new friend did it for me.

His answer,  “They are socially retarded.”

My mouth dropped open.  My day changed.  My brain couldn’t wrap itself around this at all.  Maybe I am just  politically correct or naive. 

My friend Beth quickly spoke up that my son has autism and that maybe that isn’t the best way to explain it.  I believe he apologized.  I know he said that was how a teacher explained it to him (remember I said he is young, very young.)  I believe at this point the feel of the meeting changed, but maybe just for me.

I have to be honest I don’t know what I said.  I know my brain seemed to go fuzzy for the rest of the meeting.  Then I find myself apologizing to him for getting worked up about this after the meeting. 

It took me three years to be able to say that my son has autism.  I can’t accept that definition.  It is way more complex than that.   I hate those words. 

My son is brilliant, sweet, kind, loving, and hilarious.  I also know that he is not a text book case of autism.  He has baffled all the doctors both in Iowa City and Des Moines.  They say over and over that he is a contradiction.

I can’t process this.  It’s haunting me.  I am going to have to do some serious praying about this.


6 thoughts on “This really got to me

  1. Talk to me or talk to us. Why is this haunting you? You did nothing wrong, and this isn’t really about E. We ALL know autistic children who are beating the odds and redefining what it is to be “autistic” — I have 3 autistic young men in class this year. All are lovely, and not at all “socially retarded”.

    If you look at what you’re doing, compare it to a famous parent like Jenny McCarthy, you KNOW that what you do with your child and how you advocate for your child makes a WORLD of difference in their progress/diagnosis. You’re just doing it as a non-celebrity in a church setting. Your advocacy is the key to changing attitudes like this one.

    I think a good course of action would be to invite this young man who works with this special population to attend your support group. Obviously he was delivered to you so that he could redefine his thinking and to become the advocate he’s meant to be. With your guidance and that of other parents, he will see what it means to work with the parents of this population. He will change his way of thinking. He just needs some help (or a push…).

  2. SERIOUS: I forgot to add how much I feel for you during this time. I can feel your sorrow and sadness. It seems much like he opened a wound that was beginning to heal. As a mother, you take this so much to heart and “bear” the responsibility of your child.

    SILLY: Do you want me to beat him up for you? I would you know.

  3. I think what is haunting me is the bluntness of it all (and you are right about the wound healing thing), but also that I was dumbfounded. I wasn’t prepared to counter that at that moment. It took me by surprise.

    I am going to talk to him about it. He is going to be leading our youth group and we have autistic youth. He will need to understand them.

    You are right about how this has nothing to do with E.

  4. I don’t know what I would have done if I had been in your meeting – perhaps I would have been so busy with my jaw hanging open I wouldn’t have said anything at all. I don’t know. I have to say that there are intelligent and caring people out there using words that they have NO IDEA are as hurtful and inappropriate as they are. But if redirected, they will commit to new words, new phrases, and more appropriate communications. They just need a ittle re-educating. For example, I am in Human Resources. A co-worker of mine, a well respected HR Manager, jokingly used the word “retarded” a few times to describe something not-so-smart that someone had done at work. I told her that that word was offensive to me (but didn’t detail why – as she knew I have a son with Autism) and to please choose some other word if she needed to. She looked shocked. I think she had no idea how that word might offend someone. And I know she didn’t mean to hurt me or my son or anyone else. It was just a word used as slang that she didn’t think anything of. She needed some gentle redirection. Sounds like this guy needed the same. Remember that “retarded” and even “Mongol” was a common medical term at one point – he really needs to keep up with the times.

  5. You did better than I did and now I am curious but please don’t tell me because I don’t want to prejudge anyone without meeting them beforehand but I would have been offended out of defense for my child. I don’t know if you were simply talking about autism or special needs in general but I also think that the word “retarded” has such a negative conotation in society that even if I had a child you was mentally or socially challenged I would have slapped anyone who called him retard. Besides, I have never seen E as having any social issues, not really. Just because things don’t go the way people say they should doesn’t mean that there is a lacking.

  6. This was definitely a “Forgive them Father” moment. I think that you were put in his path to educate him. It sounds like his heart is in the right place which is half the battle. I have a feeling that after being around you that he will become the greatest advocate for children with special needs.

    This also reminds me of something that I went through with Evan. I wrote a post called “In Her Shoes” a few months ago. In hindsight I really believe that God exposed me to Lisa and her son to prepare me for life with Evan. It’s funny because now I am so well versed on his needs that I am probably his greatest spokesperson. I won’t rest until we know what’s best for him and learn to understand the wiring of this unique child. I am determined that everyone else, including his school, will see him in this manner as well.

    As you pointed out, the young gentleman has no children as of yet, and you never know if you two were placed together for something greater later.

    Be blessed, my friend!

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