Monday, September 19, 2011

The Silent Child

One of the statements that Anne made in her video that really hit home with me was this:

As a person with a disability, you are often ignored in society.  If you are able to speak, you can at least have a come back, defend yourself.  

I would also add that if you are able to speak - you are noticed.  It's the disabled or sick child who can talk that is chosen to be the "poster child". Their stories are shared on television, websites and Facebook pages - stories of children who are fighting cancer, who have incurable diseases, who have received new hearts and lungs, or who are pioneers in the use of new medical technology. I recognize that "feel good" stories with cute and articulate kids are both good for publicity and heartwarming for people to hear. They are valid and important stories that should be shared.  But, what about the cognitively impaired child who cannot talk?  Their faces and smiles need to be shown and their stories need to be shared as well. The lack of recognition of the "silent child" really gets to me sometimes.  While I completely understand why it's difficult for people to connect with a child like Jack, it's still hurtful that he is often ignored.

I "like" and follow St. Louis Children's Hospital on Facebook.  Stories of the children that SLCH cares for are shared on a daily basis on its Facebook page.  Several months ago, I sent an email to SLCH's media relations person offering my perspective for her consideration.  Here is a portion of what I wrote:

I'd like to challenge you to also recognize the stories of children like my son.  A child who isn't a "poster child" because of the disease that has ravaged his body and stolen his ability to communicate.  A child who will never be cured despite the top notch care provided by SLCH.  I'd like to see someone write an article, share a story - even a picture - of the child who isn't necessarily a "success" story, but who represents another population of patients that SLCH provides care for - the silent, chronically ill, developmentally delayed child.  A child who is equally as beautiful, and whose story is equally worth sharing.  While there is no question that the physicians, nurses and staff at SLCH recognize the value of our children's lives as evidenced by the compassionate care they provide, I would love to see this recognition extend beyond the four walls of the examination room.  Every once in a while it would be nice to see a story about a child like mine.  A story about how the care provided by SLCH - while it may not cure his disease or save his life - it does enhance his quality of life, for however long that may be.  It's not a sensational story, but it's ours.  And, I believe, it's your story too.  

I received a very nice response, that provided in part:

I couldn't agree more.  Caring for children like Jack is a critical part of what we do, and provides tremendous fulfillment and inspiration to the nurses, doctors and therapists who follow these brave heroes every day. 

As the parent of a "silent child", I feel strongly that I need to raise awareness whenever I can.  It's important for people to know that just because a child can't talk, doesn't mean he has nothing to "say".


worthy said...

Amen Ann!

Christy said...

Very well written! I'm so glad you wrote to them and that you got a response.

Great job, Ann!

Susan said...


Anonymous said...

Excellent letter to SLCH and great response. I hope they decide to feature Jack some day soon!

Katie said...

Very well said Ann. And sadly so so true.

bettyd said...

Very articulate letter, Ann. Bravo! I hope you see a post soon to go along with the encouraging reply!