Saturday, September 26, 2009

Our Choice of Frame

Another seminar-Friday has gone by for the LEND program, so of course my brain is full once more.

One of yesterday's seminar topics involved delivering developmental screening results to parents, when the screen had turned up some areas of concern that needed a more thorough assessment.

The angle that was echoing in my mind:
What if that screen were an autism screen, and the family's image of autism had been informed by THIS:

This celebrity-directed video (Alfonso Cuarón, of Harry Potter and the Prisoner of Azkaban fame) was released by Autism Speaks on September 22, in an attempt to raise autism awareness. As Autism Speaks co-founder Suzanne Wright put it, "We will all help shine a bright spotlight on autism."

I find nothing bright about this video. It portrays autism, as exemplified in images of people (mostly children) with autism, as a relentless monster that will inevitably destroy the lives of the families of those in its clutches, unless those families devote every waking moment to its defeat.

A sample from the transcript:
I am autism. I'm visible in your children, but if I can help it, I am invisible to you until it's too late...

I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don't sleep, so I make sure you don't either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain...

I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering 'who will take care of my child after I die?' And the truth is, I am still winning, and you are scared, and you should be. I am autism. You ignored me. That was a mistake.

The second half of the video portrays families surrounding their children and vowing to defeat autism, for example, "We will spend every waking hour trying to weaken you."

I know that this reflects the feelings of a sizeable group of parents.

Let me say very clearly (in case you don't already know something of us and our experiences with Joy):

We do not live in this fearful, desperate frame. And we do not believe that this is all there is to look forward to!

Joy's challenges are substantial enough that we could have chosen a path of fear and anger and blame. She does not speak. She is not toilet-trained, and would play with her feces if we did not keep her wearing onesies. She does a lot of protesting these days, and grabbing, and throwing. She needs a constant watchful eye.


Our marriage is strong. We have the money we need, though we have never been wealthy and times are of course tight. We generally get the sleep we need too. We laugh much, much more than we cry. Joy goes to daycare, to church, to the zoo, to restaurants, camping, swimming, and much much more.

And meanwhile, she is learning, growing, smiling, kissing, and enriching our lives so very, very much.

We enable this richness through our choice of frame, our choice of how we will view Joy and her uniqueness and her strengths as well as her challenges.

How much harder it would be to make the positive choice if all we heard were the messages of the tenor of the "I Am Autism" video!

One of the suggestions that was conveyed during the seminar presentation, for all the future leaders in developmental disabiities who were present, was this (not an exact quote but the basic idea):

Remind parents, whether you're delivering a concerning screening result or talking about an actual diagnosis, that their child is still the same person that he or she was yesterday. All the things you love about your child, everything that was wonderful about your child yesterday, is still true today.

I'll leave you with a link to a different recently-published resource, this one from the Natural Supports Project that I blogged about earlier.

It's a booklet published at the beginning of 2009, called The CORE of a Good Life: Guided Conversations with Parents on Raising Young Children with Disabilities. The link goes to a page about natural supports in early childhood, where you can find a futher link to the actual 62-page PDF document (which is over 33Mb in size, just so ya know). It's aimed at both providers and parents, to guide conversations that explore what is important to families around ordinary experiences and relationships, beyond therapy and treatments. The approach is designed across developmental disabilities.

CORE stands for:
- Community connections and participation
- Opportunities to explore and pursue our interests
- Reciprocity in our relationships
- Enjoyment in our lives
Here's how the guide starts:
We begin here, in the early years, to empower parents to create a vision for their child's life and explore opportunities in the community that begin to build that vision.

The strategy is called Guided Conversations, described in the book thusly:
Guided Conversations are an invitation to think about;
- How to talk about children and influence how others perceive them;
- How parents identify the ordinary experiences of being a family; and
- How parents sort through the relationships that may be available to them and their child that they have not yet considered.

How to talk about our children and influence how others perceive them.

I submit that the proper use of the Autism Speaks video is as Exhibit A about how NOT to talk about our children. 'Nuff said. Let's move forward.

And the next move in this household is that we have to make a grocery list so we can take our daughters shopping, and then if the weather holds, get ourselves organized for the church campout tonight. Yes, that would include Joy. Of course.


Tim said...

JoyMama, I see what you were talking about yesterday. Definitely not a person first, diagnosis second viewpoint. The video was all about the diagnosis, and the challenges it brings, and not about the child and their uniqueness/gifts.

Niksmom said...

Excellent post! I really like the analogy of framing apt.

JoyDad said...

My take on the video is somewhat less charitable than JoyMama's, and hers wasn't especially charitable to begin with. I used terms like "shockingly offensive" and "head-explodingly awful."

Yes, there are challenges involved in raising Joy that directly result from her having autism, and those challenges have on occasion reduced us to tears. But fer crying out loud, she has so many wonderful gifts that bring us so much joy, it's hard for me to fathom an outlook like that expressed in the video.

I was reminded of something Samuel's mother said in the "Including Samuel" video. It was something along the lines that if she spent all her time trying to be Samuel's therapist it wouldn't leave time for her to be his mother.

Yes, we are advocates for Joy and we take that role seriously, but we are first and foremost her parents. And she is a kid who happens to have autism, with "kid" being the primary focus. If we spent all of our time being "warriors" against autism as they suggest in the video (and ignoring for the moment the way a term like "warrior" plays in a household where we are raising children in the Mennonite faith...) it would leave no time for us to be Joy's parents. And I think we would all be worse off for it.

jess wilson said...

Amen - to both joyparents.

I'm right there with you and grateful for your clear, strong, loving voice of reason.

datri said...

It's like those Jerry Lewis telethons -- using fear and pity to raise money. (disclaimer: didn't watch the video, but I've heard a lot about it. Right now I'm trying to avoid negativity in my life!)

Casdok said...

Lovely post - well said.

therextras said...

I can see I'm in good company here. My response was to the video was - bizarre. It reinforces what I think of 'media types' and 'awareness campaigns'. I take hope in the fact that it is dated 2006. Hopefully, AS has moved past this frame. Is there any way to take away the life of a video like this?
Good for you, datri for not watching it.

I see some blogger-mothers still refer to their child's diagnosis as a 'monster' and take on a warrior mode. I have to allow them their choice of coping mechanism. I'm pleased that is not the frame of choice for Joy's family. Barbara

JoyMama said...

Hi Barbara, I'm not sure where you saw the date 2006, but here is the text from the YouTube sidebar: "I Am Autism," a video by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann, debuted on September 22, 2009 at Autism Speaks' Second Annual United Nations World Focus on Autism at the United Nations."

This is brand new, released for international exposure... not something Autism Speaks has moved past, but something they are touting now.

I did have some hesitation about propagating this video further. But I'd rather be proactive and have people seeing it with my opinion attached... than having them confronted with it some other how.


rhemashope said...

So well said. Add this one to my long list of favorite Elvis Sightings posts. I recently read a quote on another blog from "Ten Things Every Child with Autism Wishes You Knew" that ties in with your choice of frame:

"All that is autism is not in and of itself awful, although some components of it most certainly are, and some days will be infinitely more dreadful than others. But in the long run-and it is a long run-what you choose to believe about a child's autism may be the single biggest factor affecting his ultimate outcome. You are the possessor of a super-power: perspective. Consciously or otherwise, you make decisions based on your chosen perspective hundreds of times a day. Choosing to work towards changing an unproductive perspective is wildly courageous, empowering and doable."

Lynda said...

Wow! I have no words for that video.
But it did bring to mind something a therapist said to me years ago that I took to heart. The kiddo had had a particularly challenging PT session. Lots of new stuff while still working on the old. The therapist had just run through a list of things to work on. Then he took a breath and said, "Do what you can, but remember you still have to live life."
I admit someetimes I can caught up in how the child should be positioned, how many reps of something she should do, how she should hold a tool, how many attempts at whatever she did... and forget about just enjoying the child. When that happens, I remember that quote, regain the balance, and live life. And often times I see that fun and wonderful things happen when you aren't "working" on them.

K said...

Great Thoughts

Dominique said...

Ditto to JoyDad's comments on the video. I was so offended that I lost all ability to have any perspective on that video. What the hell are they thinking? I can't believe they think they are 'raising awareness'. Ughh!!

JoyMama said...

rhemashope - lovely quote. Thanks so much! I've been meaning to read that book... in all my spare time and all...

Dominique - welcome & thanks for the comment! I think that one aspect of what's so disturbing about the video is that does represent how some - maybe a lot - of parents feel. For the leadership of Autism Speaks to be sufficiently bought-into that frame as not to see how offensive this thing would be to so many of us... It's terribly disheartening.

therextras said...

Word Verification: gloof

(Maybe I shouldn't comment?)

I just read this post on the same video. Came back to share it.