Why We Try

Photo unrelated to post; Brad took this recently, and I just love it.

I've written a lot lately about Claire's communication. We are excited about the developments we are seeing, but we also recognize them for what they are. 

We have no expectation that Claire will one day start talking, or even communicating.  Hope and faith, yes; but expectation, no.  We likewise recognize that just because Claire understands some things doesn't mean she understands everything, or that she has (or will ever have) age-appropriate cognition.

Nevertheless, I continue to hope she will be Validictorian of her Harvard class and will spend the following years studying at Oxford under a Rhodes Scholarship.  The reason I do so is that the moment I stop hoping for these goals for Claire is the moment they cease to be possibilities.

Recently, I stumbled across an article that reinforces why Brad and I treat Claire like a typical child and why we try so hard to develop her communication skills.  The article, which is on an entirely different (and controversial) subject, was written by an Australian woman named Anne McDonald and is available here. 

What you need to know about Anne McDonald is this:

Anne was born in 1961 with severe cerebral palsy, developed as a result of oxygen deprivation at birth.  She is non-mobile, non-verbal, and physically incapable of self-care.  As an infant, she was institutionalized and remained there for sixteen years.  Growing up, doctors assessed her as "severely mentally retarded" (meaning she had an IQ of less than 35), then a few years later as "profoundly mentally retarded" (meaning she had an IQ of less than 20). 

When she was sixteen, a undergraduate student doing research at the institution encountered Anne and invested time into teaching her how to point to letters on blocks to spell out words and make her needs known.  To the surprise of doctors, Anne had a lot to say!

She ended up leaving the institution (but only after a lengthy court battle in which she was made to establish that her communication was "real"), earning her high school diploma, and graduating from university with a Bachelor's of Philosophy.  She traveled the world and befriended many interesting and influential people.  She worked as an activist for individuals with disabilities, maintaining a particular focus on access to communication.  A few years ago, she was recognized by the Australian Parliament for her social contributions.

Anne's fascinating experiences, which are chronicled here, here, and here, demonstrate why I persist with Claire's language development.  Although Claire's disabilities may have a different root cause (brain malformations as opposed to oxygen deprivation), I am unwilling to assume this difference means Claire is incapable of learning to communicate.  And, although it is unknown whether Claire will ever have the same intellectual capabilities that Anne possessed, I will continue to believe she does until she shows me otherwise.

For those that may perceive my hopes as delusional or my efforts as a waste of time (not suggesting that anyone does, or if they do, that they read this blog), I am confident Anne's words will change your mind.