Tuesday, October 12, 2010

Consistently Inconsistent

I read this subject title on an email today and immediately thought of our Andrew. He has had various therapies over the last 2 years as well as school. Every thing we have attempted to teach Andrew over this time has relied on data, evidence basis to prove that he understands or can complete a task. We have had a hard time proving to educators and therapists that Andrew is really still inside this little wandering body and knows more than what he shows. Most people are not as positive about Andrew's skills as we his parents are. I guess it's only natural but it really doesn't help in that the data collected on our sweet boy looks like a bunch of mountains. He has days where he is spot on- performing well, eye gaze great and leading us to believe- he knows so much. And then the next day or next few days he is non responsive, bored and data is 50% or just a chance that he got the correct answer or performed the task correctly. So frustrating!!! With Andrew I try to think about how it would be if I struggled with breathing- alternating between hyperventilation and breathholding while my hands kept moving even though I am trying to make them stop. I don't think I could concentrate long enough to make choices , pay attention at school or answer questions through eye gaze. More than anything I just want educators and therapists to give Andrew and other children/adults with disabilities the benefit of the doubt. It's when you least expect it that these folks really shine.