Tuesday, July 30, 2013

Tuesday Topics - Labeling Your Child

All last week I was in charge of games for our church's Vacation Bible School. It was so much fun! We played a human ring toss game, a game in which the kids had to hold hands in a circle and pass a hula hoop all away around, and a lot of tug of war! Plus, because it was so hot out and games were outside all the kids got a popsicle and water after each game! Most of the kids were thrilled about being there but there were a handful who just weren't having it.

I helped with the decorations as well as the games and general brainstorming with our church's secretary (who I love so much) so I overheard a lot of plans and "issues" being discussed about it. I wasn't eavesdropping! These conversations took place in the same room I was working. I knew for sure that we were to have one autistic child from one of these conversations and I was prepared for him. However, there ended up being three or four and their parents never said a thing about it.

I do understand not wanting to label your child with a disability to a certain extent. I do not understand not letting someone know that your child is autistic so we can better prepare ourselves to help your child cope during the week. For the sake of reference I'll call this kid Greg. When Greg showed up on the second day of VBS he didn't have any desire to play the game we were playing. I would never force someone to play if they didn't want to so I told Greg he was welcome to hang out in the shade and I'd give him a popsicle with the other kids when the game was over. I turned around to give instructions to the other 15 or so kids and when I turn back around Greg was gone! I look around and he's slowly walking towards the parking lot looking into the sky and mumbling something in an unidentifiable language. I ran over and tried to get Greg back under the shade and away from the street and I had to push him along because he wasn't moving. Later that morning Greg just walked away from the snack area on his own. I found him in the craft area and again had to push him back to his group.

After putting away all of the toys and such for games I was taking a break from the hot sun in the refrigerated air conditioning of the church office. The secretary was on the phone and what I heard went something like this:
"Well he doesn't seem to want to interact with anyone and he's getting a little angry when we try to interact with him. We were just wondering if there is anything we should know to help us make him happy or help him interact. Oh. OK. So he is autistic. OK, I will have one of our volunteers who is about to graduate with a degree in early childhood education watch after him."

Why wasn't this information given at the time of registration? We were fully prepared for a wide variety of special needs but we need to know which children have them and what the needs are.

I posted this to my Facebook and Tumblr to see if anyone disagreed with me:
"Question for anyone willing to provide an opinion: Do you think it is ultimately harmful or helpful to a child when his/her parent refuses to label him/her with a disability to avoid special treatment or negative connotation. For example, if the parent doesn't let caregivers/teachers/anyone watching their child know that he/she is autistic."

So far only two people disagree. One said that her ex never got special treatment for his heart condition and that made him a better person. I can see that but I think I'd still like to know if the child I'm watching has a heart condition just in case something happened. The best response I've gotten really tied into that. A friend of mine on Facebook said, "... if the kid is severe enough to be diagnosed, then teachers/caregivers need to know in the event of an emergency, or any other situation that could arise. They will need to know if the kid does need special treatment."

A teacher I've known most of my life says that not passing on the information to teachers can be the parent's way of testing the system. The parent, being in denial about the diagnosis, won't bother letting anyone know to see if the teachers notice something wrong with their child and bring it up to the parent.

On the opposite opinion is a distant cousin of mine. She has a 30 year old son who has been given the diagnosis of "profoundly mentally impaired." She feels that her son was able to receive a lot of assistance that was needed that he never would have gotten without that label but at the same time it does give a negative connotation. She even said that as she commented on my post he was watching videos online with us own laptop by himself. Obviously he isn't too profoundly mentally impaired if he is able to do that on his own. He can not feed himself, walk, or talk but he communicates through a touch talker and sign language.

What do you think? Do you think that parents should let teachers/caregivers/etc know about special needs including autism? Do you think the parents should let the child with autism know?

Also, here's some links I found interesting while writing this:

Should I Tell My Child They Are On the Spectrum?
Don't Let a Label Define Your Autistic Child
Autism Speaks
Truth in Labeling

Finally, just to lighten the mood a bit, here's a photo of Gibbie with Duke the horse and me with Duke the horse from Vacation Bible School:

Happy Tuesday!

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