limiting the assumptions

When I am asked about Rachel and Janneke with reference to their special needs, I am often asked about their comprehension.  How much do they understand? Do they understand you?

Truthfully, I am not certain.

I am certain she loved hearing her cousins sing Happy Birthday to her over the phone.

And I am certain that Janneke loved meeting these chickens.  She was yelling and laughing the entire time.

Yet lately, I have been challenged to consider that maybe they are understanding more than I would assume.


Not a great word.

When we look at the outward appearance of someone like Rachel, it is easy to assume that her physical limitations mirror her cognitive limitations - that she probably doesn't get it.

Yesterday I took both Rachel and Janneke to the eye specialist in Kitchener.  As we drove, Rachel became agitated.  I stopped along the way to talk to her and comfort her.  I couldn't be certain what was causing her distress - bowel discomfort? illness?, but I also began to wonder if she was actually nervous.

When we arrived at the clinic and met our doctor, she began to bang her arms on the wheelchair.  Her face became very serious, and she began grinding her teeth.  When the doctor moved closer to her to check her eyes, her hands went up to push him away.  She kept her face bent into her bib, making it difficult for anyone to see her eyes.  When I picked her up to hold her, she squeezed me and then looked at the door.

I think she wanted to leave.

There's a book that we are reading here at home called Out of My Mind.  It's written from the perspective of a ten year old girl who has cerebral palsy and is finally able to communicate with the use of a talking device.  It's written by Sharon Draper for youth, and I recommend it for youth and adults.  I think it would be a powerful book to study in school or as a family.

The story challenged me as a parent to reconsider how I talk and treat Rachel and Janneke.  For all of us, disability can muddy the waters of our relationships.  When we see someone with a disability, do we talk normally to them - or do we change our tone and volume of voice?  Are we quick to do things for those who are affected by disability- without asking if they would actually like the help?  Sometimes I find that as a family, we are treated differently, as if Rachel and Janneke's limitations have dis-abled all of six us.

I can't be certain that Rachel and Janneke comprehend everything I say, but I am thankful for books, people, and articles that challenge me to reconsider and adjust my expectations.  I try to talk to Rachel and Janneke as if they do understand, and I guard my nonverbal behaviour.

I am also especially thankful for kids who ask questions.  Recently at a birthday party, a new friend named Tessa pulled on my arm after meeting Rachel.  She was indignant: "I'm saying hi to her and she isn't saying hi back."  We had a good conversation about limitations, love, and acceptance.

I know I may never know what Rachel and Janneke understand.  They may understand very basic instructions and simplistic ideas, or... for all I know, they might be stuck in their bodies - their minds are ready but trapped.  Either way, I must remember dignity and respect for who they are and for His Image they mirror.

I can't easily articulate the guilty feelings that come when I think that maybe I've assumed less of my children, but I know that I am learning with each experience.  I don't want to be a disability militant, but maybe we can take more time to reflect on our own assumptions and feelings with regards to children with special needs, families with special needs children, and adults who live with disability - mental, physical, emotional, etc.

Peace to your homes tonight.

As a side note: With reference to limitations and the danger of assuming, I came across this new icon being shared, to replace the former "handicapped" symbol:

The icon was changed to indicate movement, progress, and ability.... in spite of the obvious limitations. Read about it in New York City here.

Pretty cool.