Everyone says “enjoy the journey” and I agree to some extent. My son Clayton is 23 years old and he was diagnosed with Williams syndrome when he was 9 months old. I have enjoyed this journey, but not without many bumps along the way. First being a parent is not easy. Being a parent of a young adult with an intellectual disability is also not easy. Sometimes in the past I have questioned some of my decisions for Clayton, however I feel confident that the most recent decision to restore his rights and remove full Guardianship was a good one. When Clayton turned 18, I petitioned the court and went before a jury and declared Clayton “incompetent” in the state of Kentucky. At the time, Kentucky was the only state who still required a jury trial for Guardianship cases. That has since changed. The new law, which became effective, March 13, 2018 waives the need for a jury trial. Instead, it requires evidence from three medical professionals to confirm the need for guardianship. The right to a trial remains intact for anyone who requests one. For more information about this change visit: https://legiscan.com/KY/bill/HB5/2018. When I made that decision 5 years ago I felt it was the right thing to do. We as parents want our children to be included while in school. We fight for inclusion and for the Least Restrictive Environment, but when then when they turn 18 we feel we need to go to the “most restrictive” which is full guardianship. Why? Because we want to protect them from all harm. That is a normal reaction for a parent. I was no different.
For 5 years, I was Clayton’s Guardian. During this time, he still made decisions and told me things he wanted for his life. He works two jobs and also does public speaking at schools and various events around the state. He was and continues to be very active and busy. He has a girlfriend and plans one day to have his own home and get married. I am asked often why I decided to make this major change in his life. Well I did it for him. Cognitively Clayton has a low functioning IQ, but with supports he can make decisions on his own with assistance as needed. I heard about Supported Decision Making (http://www.mychoiceky.org/) a few years ago from my friend Laura Butler who works for the Human Development Institute. I wondered if this was something that could benefit Clayton down the road. About a year ago, we began working with Protection and Advocacy and the Human Development Institute to plan what we needed to do to make this dream a reality for Clayton. Since that time, we created an amazing support team around him, did many months of training and preparation and petitioned the court to request Clayton’s rights be restored. The judge signed the petition and Clayton is now his own Guardian! We have set up a Power of Attorney that will go along with our Supported Decision Making agreement. Kentucky does not recognize Supported Decision Making as a formal document, so we are also including the Power of Attorney with specific language. Will he still need assistance throughout his life? Absolutely! Does it always have to be from me? Absolutely not! Do I wake up every day with concerns? You betcha, but as we all have learned from challenges and mistakes, Clayton needs to do the same, but with a support team around him to help along the way.
As I said at the beginning parenting is hard, but at some point, we have to give them roots and wings so they can fly! I have heard this quote in many versions, but the one I like is this one – “There are two gifts we should give our children. One is roots and the other is wings.”