Christine's Chronicles: Parents Speak Out

I missed posting on the blog last month, due to a much needed vacation.  My husband and I had the opportunity to leave Luke with his grandparents and spend a relaxing week in the mountains.  Besides hiking, swimming, and getting some fresh air, I also had the chance to catch up on some reading.  I read Parents Speak Out: Then and Now by Ann and Rud Turnbull, a collection of essays written by parents of children with disabilities reflecting on their journeys as their children come into adulthood.

After meeting and speaking with parents at the Inclusion Institute in July, this book picked up right where those conversations left off.  Of course every child and parent had their own story and each took a different path for a variety of reasons.  But as I listened and read their stories, I searched for common themes that could in the end help bring clarity to my own path and the decisions I have made and will make for Luke.

Most agreed that in theory inclusion is a wonderful thing.  But in reality, it doesn’t always fit for a given child or family.  There is a wide spectrum of environments that range from fully inclusive to self-contained.  Most families seemed to fall somewhere in the middle.  But what all families wanted, regardless of their own context, was a variety of options.  They wanted to have a role in defining those options and choosing which was best for their child. 

An enormous amount of groundwork has been laid for us new parents out there to make inclusion an option.  The law is on our side now and there are fewer battles against biases and attitudes.  Even so, just because it is an option, it doesn’t mean it is always the right one.  And as parents, we need to stay informed and be aware of our options.  Practitioners need to help us understand those options and keep in mind our family views when making recommendations.  What experiences have you had as a practitioner or parent in defining and choosing those options for a child with disabilities? How can we best help new parents to get all the groundwork information that can make inclusion an option?

I feel lucky that inclusion was an option for my son.  But after a year in an inclusive childcare center, I wasn’t exactly happy with how things were going for him.  But that brings me to another theme from the parents’ stories, one which I’ve mentioned in previous posts—collaboration and family partnerships.  And that important piece was missing for my family last year.  It’s been a few months since this realization and I’ve made some changes.  I’ll leave that for next month’s post, but know that Luke is doing great, and we’re set on inclusion—for now.