A parent's voice...

Autism Awareness month is almost over, but that doesn't mean that autism awareness should stop.  We still have so much work to do to improve the community acceptance of individuals with ASD.  So the hard work continues.  We work very hard in our organization to support families and I have been thinking about it a lot over the past 2 weeks.  Why do we work so hard to support families?

Our practice has evolved over the past 10 years, but what remains the same is our commitment to family centered practice.  Why have I always felt so passionate about the family's involvement?  I think it goes back to the very first family I ever worked with.  When I was in my second year of my undergrad degree at the University of Ottawa (an indefinite amount of time ago...), I was asked to work in a home program with a 4 year old with autism.  In the early 90's, very few people knew what autism was!  It was then that I met a mother who impacted my perspective permanently.  She was an amazing mother.  She put together a 'home program' before home programs even existed!  She worked closely with me and we tried many different things!  We worked so hard with this little guy and we were a team.  She taught me that a parent's voice must be respected and that the parent is a collaborative partner.  She never let anything get in the way of us moving forward.  When Frost and Bondy's article first came out about PECS, she got them on a conference call with the two of us to ask "what this PECS thing was all about"!  She was a woman full of strength and resilience and I will be forever grateful for all she taught me. 

Since then I have met so many families!  They have the same strength, resilience and persistence in helping their child.  Parents are their child's first and most important teacher.  They will support their child throughout childhood and well beyond (*my mother is still a huge support for me!).  THEY are their child's voice when the child doesn't have a voice.  They are their child's best support to help them learn how to speak for themselves!  They live the daily struggles and they want the best for their child.

A parent's voice needs to be heard.

"Once you are in a relationship with a child, you are also in a relationship with the child’s family" -B.Prizant: Creating a Culture of Family-Centered Practice for the Autism Community

While it has long been widely acknowledged in the field that "parent involvement" is essential (NRC 2001), the meaning of 'parent involvement' is not consistent.  For me, it means they are not only an essential partner, they are the only permanent support for their child.  We as service providers are simply there to join them on their journey for a time and do the very best we can to support them to be successful in the future.