When I found out that I was pregnant with twins one of the first things I did was ask my sister if she would be their guardian if something ever happened. I know that is not the first thing most people do, but I am an estate planning attorney and my sister is also an attorney so we had a little sister/attorney bonding moment. It helped me to know that if the unspeakable ever happened, that my children would have a home and someone to care for them. So, I updated our wills to name my sister as guardian and to include trusts for our future children — so that my sister would have additional resources to meet their needs.
When the twins were born, they were early and fragile. My son’s initial hospital stay was 167 days and he came home on oxygen and with a feeding tube straight into his stomach (past it actually!). My daughter did well after the first few hair-raising weeks, but my son was medically fragile and very complicated. Among my many concerns was whether my sister would still want to care for him and whether she would be able to do so. I was afraid to burden her with the needs of my son if I were to die.
Eventually I asked my father if he and my mother would serve as guardians. He took a deep breath and said, “no.” That was hard to hear but it was the right thing for him to day. I still have a hard time understanding that my parents have gotten older, that they tire more easily. He reminded me that I should ask my sister or my brother.
Asking my sister to commit to being the guardian for my son only became harder when he was diagnosed with autism, but I finally bit the bullet. I was ready to cry when I asked my sister if she would be Mac’s guardian, but I soon realized that I was creating my own barriers. When I asked my sister if she still wanted to be the twins’ guardian she said, “of course.” Duh. I told her that we had life insurance and a supplemental needs trust for Mac and that funds would therefore be available to meet his special needs. I don’t even think she was worried about that, but it gives me some peace of mind.
I often tell this story to estate planning clients who have children with disabilities, especially if they come to me for help establishing guardianship. They worry about asking friends and family to serve as guardian to their child who has special needs. I hope this story helps them, and you to get passed these feelings and just ask. Too often we create barriers that isolate us and our children unnecessarily. I find that most of the time, when we give people an opportunity to stand up to the plate they will do what they can to help our children.
Amy Dawson is the parent of twins, one of whom has autism and special health care needs. She began practicing law in 1992 at the firm of Faegre & Benson, L.L.P. in Minneapolis. She also worked at the PACER Center and is a member of the Board of the Arc Greater Twin Cities. Amy’s law practice focuses on issues related to autism, disabilities, insurance and estate planning.
Bob Gunderson inspired me to devote my practice to individuals who have disabilities, their families, and the organizations that serve them. Bob Gunderson was my mentor, friend and colleague and I miss him very much. Bob Gunderson served the disability community as an attorney, as a brother, and as a dedicated volunteer who spent many hours in service to organizations such as Opportunity Partners, Fraser, PACER, and the Arc of Minnesota and Arc Greater Twin Cities.
Amy,
Thank you so much for coming to Walker tonight. Your presentation was very helpful to parents and professionals. As a soon to be retired special education teacher, I see such a huge need for services for our kids who leave the school setting and head into vocational/adult world. They need continued intentional instruction as well as community based employment opportunities. Out of home living options for young adults on the spectrum is non existence up here. We have work to do.
It was a pleasure to meet you. Again, thanks for sharing your expertise w/ us in northern MN.
Connie