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In Their Own Words - The Conversation

Janet Edghill is the mother of a 4-year old son with severe autism. In addition to her autism insurance reform advocacy, she is also Vice President of the Hawaii Autism Foundation (HAF), a non-profit whose mission is to find and fund autism treatments for those who can't afford it, and to bring medical doctors with expertise in autism to Hawaii to treat affected children.

My husband and I are older parents…still I don’t believe we’re ready to kick the bucket just yet.  However, a car accident could wipe the two of us out together and I have started to think about who will raise Ryan should something happen to Tom and me.  This is a tough question all parents have to ask themselves, but autism adds a whole other level of complication.  Not everyone is cut out to raise an autistic child. 

I don’t mean just for the extra patience, tolerance, acceptance and sheer grit required.  It takes a level of energy that can be difficult to muster, even for younger people.  My older sister has generously offered to raise my kids, but I’m about to drop from exhaustion at the end of the more trying days; I don’t see how someone older than me could possibly do it. 

This issue resulted in a fairly awkward discussion with my 17 year old son—would he take his brother if something happened to us?  He’s young but mature, compassionate and very good with Ryan.  He understands the issues associated with autism, and he loves his brother half to death.  After the lead-in, describing how Tom and I had perished in a tragic accident, it went something like this:

Me: “Would you be willing to raise your brother—I can’t think of anyone else who could do it. You’d have resources.”

Eric: “Does ‘resources’ mean money?”

Me: “Yes.”

Eric: “Well, it would kind of suck. I want to go away to college.”

Me: “It would ‘suck’ worse for me and Tom ‘cause we’d be dead!”

The absurdity of asking a child to raise another child is something I never thought I’d have to contemplate…but here I am.  Autism derailed the life I thought I’d have…the one where I go to Tuscany for a month to drink in the culture and the wine, learn how to cook gourmet food, and luxuriate in the Italian sun (Alright--I admit this is just a dream!!).  But it’s OK, because this journey has introduced me to the most incredible, amazing people—my youngest son, who despite so many challenges always has a smile on his face, autistic children struggling to do things the rest of us take for granted, and their parents, with their endless hope and patience. 

I don’t have to live forever—just long enough to get Ryan on a path to independence. My teenage son is counting on it.