The Genesis of Autism Parents Connect

I am often asked “what was the inspiration for the development of Autism Parents Connect?” The answer is both complex and simple.

I knew that I wanted to share and “pay forward” what I had learned in the nearly 8 years I homeschooled Matthew and the 18 years (at that time) that I had been raising him. The complex part has to do with the work I did in graduate school, the parents I interviewed, the marketplace research and parenting stress research I did, and so many more inputs.  But the simple answer is that there was a specific experience, a moment really, when I knew that I had to do this.

I was sitting with a group of mothers of older teens with special needs.  I had had an experience several weeks before that was weighing heavily on me and I was trying to decide if I had the guts to share it.  I was feeling terrible shame about the fact that we “lost” my son who was then 16 for a completely horrifying 10 minutes when we were on vacation. I lowered my eyes and quietly started to confess my dark secret.

One mother shouted out “Are you kidding me? Is that the first time you lost him?” She threw her head back, laughed and hit the table. One by one the mothers started sharing stories about multiple times they each lost their children.  The emotions I felt in that moment were overwhelming. Tears welled up in my eyes from relief that my experience was so common. I felt unburdened from the shame I was carrying. I was so grateful to the mothers who shared their stories. I realized how much we can learn from each other even when we are not intending to teach.

In that moment, I knew I wanted to provide access for all parents to a community to share and learn. The analysis of what that forum would look like, the practical and emotional issues we would address, and all of the details surrounding the formation of Autism Parents Connect proved quite complex.  But the underlying goal – the learning, the warmth, the power and value of the bonds that parents of special needs children can make is actually quite simple.