Systems Unchanged

Soon after I adopted Ashley 17 years ago and began my journey into the world of special needs, I decided to work as hard as I could to make things better for her and other children with disabilities.  I served on advisory councils for organizations supporting children with special needs – I was on steering committees whose goal was to make the educational experience better for those children – and I presented on the subject to anyone who asked me to.  The main theme I heard from all the experts in the field was ‘systems change.’

To make things better for children with disabilities, we needed to affect ‘systems change’ – change in our educational institutions, change for medical professionals, and change for all the other people who provided support to our special children. 

I bought into that concept for many years – thus the reason I always agreed to serve on those advisory councils and steering committees.  I truly wanted systems to change – I wanted my daughter and others like her to get the education to which they had a right – I wanted doctors and nurses and therapists to understand my family’s challenges and adjust their thinking on support – I wanted any ‘system’ with whom my child had contact to respect her, challenge her, and believe in her.

Sadly, those 17 years have passed and I haven’t noticed or experienced any significant systems change.

But that doesn’t mean that everything has been bad for Ashley.  Yes, the elementary and middle school years were bad, but high school has been wonderful.  Since I haven’t really seen any systems change (my school district is back to sending all the deaf children to the same school, all the children with autism to the same classrooms, etc.), I wanted to figure out why things have been good for Ashley in high school.  And I think I have.

We haven’t affected any changes in our systems as a whole, but what we have done is touch the hearts of some of our teachers, and in the process affected positive change in that way.  What has made the high school years great for Ashley and for my son, Ronnie, is that they have teachers who believe in them, teachers who want them to succeed, and teachers who are willing to go that extra mile to understand their unique learning needs.

I no longer serve on the advisory councils and steering committees.  I have very few conversations with the ‘systems’ and organizations that support my children and other children with disabilities.  What I do have in open, honest conversation with my child’s teachers.  As a result, the teachers also do not see a ‘system’ of children in their classroom – they see individuals with unique qualities – individuals that need to be taught in individual ways.  They see Ashley…and Ronnie….and all the other children in their classrooms and they are committed to doing the best job possible for those students.

That, dear readers, is positive change, change that will make a wonderful difference for my children and the children that come after them.   While I want my children to be seen as individuals, I believe teachers also want to be seen as individuals, not lumped into systems which may be flawed, but unique individuals who want what is best for their students.  Those teachers will be the ones who lead our systems forward, and I am so very grateful to have met some of them!