A Discussion About Guardianship (and some girlies)

Kathleen and I are excited to announce that our video show, The Blog Ladies, is being rolled out this week on The Autism Channel on Roku. We've been trying to get things quiet enough at both our houses at the same time so we could film our pieces, and then we realized, well, come on-we're moms with kids who love the camera and think that when we're on the computer and filming, it's time for a skype playdate. We gave up on quiet. We said the heck with no kids. We even decided to embrace the noise and chaos that is our lives. There will be animals. Even chickens. There will be children. You get us uncensored (mostly) and off-the-cuff. There will be tiaras and fairy wings and wigs and giggle fits.

One of the segments we wanted to do was guardianship--it's such an important and serious thing that parents of children with disabilities may have to consider, and it's fraught with pain, sadness, worry, uncertainty at the outset. It is a major wake-up call that autism doesn't end at 18, that our job as parents to be there to assist our children, to look out for them, to teach them to look out for themselves isn't over just because of a magic number.

While this is difficult for parents, it is also difficult for our children who are becoming adults. What will guardianship mean for them? How will it impact their ability to drive, to work, to vote, to spend money, to date, to marry?

When we took guardianship of Bobby, Rick and I intentionally shifted our focus on our relationship with Bobby. Yes, we are his parents, but we are his guardians, and that means our job as his guardians has to be separated from our emotions parents, our fears and concerns. We have to avoid being overprotective. We need to avoid infantilizing him. It is our job as his guardians to help him make his own decisions, to provide feedback and advice, and to respect his wishes and goals.

It's not always easy, but it is, to me, essential. It is, in the end, his life. His life. Not mine. Not Rick's. His life. His choices. We're honored to be there for him. And trust me, when you let go of preconceived expectations and embrace the life you have, it gets easier, it hurts less. When we learn to measure our lives not on how they compare to other people's but on whether we are happy, whether we have good work, good friends, and laughter and love, things change drastically.

The best part, my favorite, at least, is in the 40 seconds I had to cut!:


Kim Stagliano: http://www.huffingtonpost.com/kim-stagliano/autism-research_b_1926901.html

Kim Wombles: http://kwomblescountering.blogspot.com/2012/10/have-little-faith-standing-together-or.html

Susan Senator: http://susansenator.com/blog/

Liane Kupferberg Carter: http://www.huffingtonpost.com/liane-kupferberg-carter/adult-child-autism_b_1390123.html

Autism After 16: http://www.autismafter16.com/content/huic-nostrud-typicus-ratis-quadrum

Lucas Works: http://www.lucasworks.org/autism-preparing-adulthood.html

If you know of other articles or essays on guardianship, especially from an autistic's point of view, please link in the comments.


melbo said...

Really, the everyday life creeping in from the side only enhances the viewing experience. It's so good to actually see and hear you after reading about you and your family for so long. Great work!

Stephanie said...

I do hope the segments are available online. I believe Kathleen said they would be, and I hope these videos are it, but for some reasons they're not loading at the moment. I'll try back later (or if you have a different link, please share).

I want to congratulate both you and Kathleen on your show! I look forward to watching (if I can do so via the Internet).

K Wombles said...

Thanks, Mel! :)

Stephanie, The Autism Channel is still rolling out episodes. I think our interviews with Dan Heinlein were coming out today on the channel on Roku.

These segments here will air later. I wanted to make sure everyone would have a chance to see these on guardianship. I just tried the videos and they worked, but this will take you to them on youtube:

Stephanie said...

Thanks, Kim. They are working now. It must of just been a temporary problem.