By Susan Day Fragiadakis
As the sibling of a man with an ASD planning with him around his wishes is very important to me. I have been very lucky to have a mother who has taken the lead on all aspects of planning for financial, health, activity and general quality of life issues for my brother. My mother is in her late 80’s and eventually my sister and I will assume her role in advocating for my brother’s wishes. Thankfully we have a very close relationship with my brother, and since childhood have learned to interpret his non-verbal communication style and support his right to make choices.
As I thought about assuming this role and what this would mean, I initially felt ill-prepared to sometimes speak on behalf of my brother who does not speak and inconsistently uses his ability to print words to express himself or make choices. I thought about what I have available to me when I need someone to help me make decisions, solve a problem or join me in a new adventure! I am able to seek out and explain my dreams, desires and needs to the people around me. I have a husband, children, friends and co-workers who I can depend on for a shoulder to cry on, cheerleading when I need it, and sometimes just an ear for me to talk to. My brother has a much more limited circle of people to support him, and many of the people he sees every day are paid staff (who really care for him but may not be in his life long term).
Then I tried to think of what I would expect of my sibling if I was him. I would want them to assemble a group of caring people who have known me through various stages of my life, who have shared the good and bad times with me. I would want people who enjoy me as a person, who feel comfortable sharing a laugh with me, but who also would be the ones to comfort me when I need them to. I would want someone who could tell that I need help even if I cannot express it in a traditional way. I would want someone who knows how to celebrate my small victories, encourage me to keep trying new things and will help me try again when I have not been successful.
My sister and I cannot provide this alone, nor can my daughters be expected to do this by themselves if my brother outlives us. This is where planning is crucial – to give my family the peace of mind that there are a group of people who know my brother and who have chosen to be committed to providing the support to him to achieve the quality of life he deserves. This is why person-directed planning is so important to our family.