Monday, September 27, 2010

The Eyes of the Heart

One of the things that became evident early on in our journey with autism was the fact that we were not going to be able to do this alone. Fortunately, in this country, there are several services funded by the government like speech therapy, occupational therapy, resource teachers, EAs, among others. (I won't address the frustration of the waiting lists at this point) Suffice it to say, from the moment we received our diagnosis, we have had the privilege of allowing several new people into our lives, all with their specific ways of handling situations, behaviours etc. It didn't take us long to realize that not all professionals are created equal. All therapist, though no doubt mostly all well-meaning, fall into the category of visionaries or realists. My encounters with the realists have always been fraught with jagged emotions. Once these emotions are processed they give way to a quiet determination that Scarlet will not meet with their low, unfeeling calculations. These types of professionals are hurricane force winds blowing our little fishing boat entirely off the course of hope. Even now, three years into this process, these realists are difficult for me to navigate.

The other type, the visionaries, well they are the ones that find our little boat floating and point us in the direction facing the sun and show us a better way to steer. My friend, Tony Elenburg, wrote a song called "The Eyes of the Heart" in it he says, "when you see through the eyes of the heart, you can see a rainbow, when others see the rain, when you see through the eyes of the heart you can see more than eyes can ever see" I am so thankful for the professionals in our lives who are able to see through the eyes of the heart. And, indeed, when they describe my daughter and her possibilities, I feel like they know her like I do. S.T.E.P.S. has been one such organization (our IBI providers) who have been a constant source of encouragement. Recently, when we received funding from the government for IBI, we changed Clinical supervisors with S.T.E.P.S. to a lady in Whitby named Sandee-Lee. Part of the red tape associated with such a funding agreement from the government is an assessment by the new Clinician in charge. This clinical supervisor then writes up the programming for IBI... writes out the things that Scarlet should be focusing in in her therapy and provides instruction on how these things should be done.

After our last visit to the Kinark provided psychologist who did the cognitive assessment, I was a bit raw at the thought of yet another assessment that lined Scarlet up against all the other kids with autism and rated her in comparison to all the "others" with no thought to her capability to learn and improve. I was in for an entirely different experience with Sandee-Lee. Laura, the owner of S.T.E.P.S. accompanied Scarlet and I to Whitby. She prepared me for the fact that Sandee-Lee might decide that pursuing language development with Scarlet was a mute point. She also reassured me that if anyone would see the possibilities it would be Sandee-Lee. You can imagine my surprise when Sandee-Lee said that in her opinion we shouldn't give up on pursuing more words from Scarlet. She explained that Scarlet is making all the necessary sounds to form the earliest words that appear in an infants vocabulary. She explained that when babies start making these sounds, the way they learn to form them into words is based on the responses they receive from the people around them. For example when a baby says "mamamama" everyone, especially mama, goes crazy saying things like "she just said mama etc." She thinks we should try similar strategies with Scarlet, so that when she makes a sound like "ba" then we go crazy saying, Scarlet you just said ball, bring her the ball and play with her. After years of thinking that I should likely resign myself to living with a non-verbal child, her words were like fresh air rushing into a sealed tomb.

Scarlet's programs in IBI have now changed to focus on her attending to instruction, making sure she makes eye contact and follows through with instruction before being provided with a reward. I am so thrilled with the direction Scarlet's therapy is taking and feel optimistic about Scarlet's vocabulary. Also, Scarlet, continues to amaze us with her voice output device as she requests food and books and TV. As we choose to see the future through the eyes of the heart we look out at the palm trees jutting out on the horizon and hear someone shout "land ahead".