Friday, June 16, 2006

Need Your Input

Sorry I have not been as regular with this blog as normal. I have been fighting a flu bug and working on a big project.

In a prior post I wrote about my sense that awareness of what we experience in day to day life would help bring about acceptance and better support for our families. I was surprised by the reactions to the dvd Autism Everyday by Autism Speaks. I am trying to understand this controversy.

I did an interview recently with a reporter who is doing a piece about how the media can do a better job of covering disabilities. My position was that the media could help bring about awareness and acceptance. With the above controversy, I am not sure that would be desirable to all parents.

I would like to hear what you think. Please either comment to this post or email me privately (if you prefer).

Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Parenting Your Complex Child Yahoo Group

3 comments:

Anonymous said...

Liz here from I Speak of Dreams. I just looked into my email box and realized I had drafted a reply that I never sent.

My IEP Season post has links to a lot of blogs about kids with Down Syndrome. It also talks about using language properly -- technically, Down Syndrome and other forms of developmental delay aren't "learning disabilities", but are often called such in the press.

You might want to visit Kevin Leitch's blog, where he responds to the Autism Everyday movie with a movie starring his daughter, "Beautiful Autism" (link is at the bottom of his post) and a further post about Katie McCarron (with pictures and a message from Katie's grandfather.

K.C.'sMommy said...

Hi Peggy Lou,
I think it all depends on how the child's disability affects him/her. K.C. being a lower functioning kiddo there are many, many stresses. The Autism Everyday Video was nearly exactly what we deal with on a daily basis. Then again if there is a kiddo who is high functioning Autistic, the parents may not feel as the lower functioning child's parents feel. I think it's a very touchy subject because the children can be so different and affected differently. Finding a balance between them both is going to be a great challenge. In our house Autism isn't viewed as "Beautiful." I have seen Kevin's movie and indeed his daughter sure is beautiful:) Autism in our home equals, headbanging, frustration, not being able to communicate and one unhappy little boy.
That's just my 2 cents:)

Tina

Kev said...

Hi Peggy Lou (and Tina),

My child is, like Tina's, diagnosed as low functioning. All the behaviours you list Tina are behaviours she either used to display or still does on occasion. I try hard not to let that imposed distinction bother me but I'm afraid it does.

Megan doesn't speak at all (although that is improving very slowly but very surely). She's going through a good sleep period right now but doesn't always. She has meltdowns. She gets frustrated. I also find it frustrating that I have to describe her in such negative ways in order to address a difference that simply isn't there. Its too easy to brush aside any concerns people have with assumptions about the functional level of peoples kids. Its also disrespectful to the issues the child in question faces.

She, and that which forms part of who she is - autism - are still beautiful. On the days she's a joy and on the days she's miserable. Autism gives as well as takes.

The Autism Speaks video was not representative of what any parent deals with I think. I simply don't believe that there are any parents who never see anything to smile about with their kids. The Autism Speaks video showed unrelenting negativity and most troublesomely, seemed to excuse thoughts or acts of violence towards one's disabled child.

There is a documented link between violence towards disabled people and media stories that seem to condone it. That needs addressing, not perpetuating. The Autism Speaks video did not do that. The producer admitted that a lot of it was stage managed.

I would rather have seen a film which depicted that actual reality - both good and bad - of parenting an autistic child. I would also expect input from autistic people in a video from an organisation called Autism Speaks.