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Family Involvement – by Jeffrey Amos

As Steven’s brother, I was always there for him. After I got my driver’s license in the early 90s, I would regularly drive Steven and his roommate back to Orangeville from his and my parents’ homes in Etobicoke on Sunday afternoons after weekend visits. I continued doing so as my parents got older even after moving out of my parent’s house into my own place. I would take him to movies and come over for roast beef dinners to spend time with him and the family. I took him on vacations such as our big cruise from California to Mexico in 2010 and trips to my cousin’s cottage. In my mind, I was very involved in my brother’s life and even attended the yearly PCP meetings with my parents.

Jeffrey Amos

In 2008 my aging father had to move into long-term care. My brother continued to visit my mother monthly and at holidays. I continued to attend PCP meetings, although my mother was the main point of contact for Kerry’s Place staff. Everything changed when my mother was diagnosed with cancer in 2014. What started as successful treatment ended with the cancer metastasizing and her passing away in summer 2014. With my father in long-term care and his own health in decline – he eventually passed in the summer of 2015 – I was now the main family contact and substitute decision maker.

I regret never having had “the talk” about all of Steven’s issues and well-being with my parents. However, it a was conversation that, at the time, I never knew was required as it wasn’t in my consciousness. Although I previously thought that I was sufficiency involved, I began to learn that there were many issues that I needed to familiarize myself with such as diet and nutrition, medication, and other health issues. As I have become Steven’s primary family connection (replacing my parents) and substitute decision maker, it has been a steep learning curve. My learning process has had an ultimate goal to improve all of the aspects of Steven’s life.

Steve at Medieval Times!

The role of Kerry’s Place in Dufferin has been instrumental in this process. The staff at Kerry’s Place have helped me to become more cognizant of Steven’s needs, and the aspects of his life with which he is satisfied and where it could be improved. I realize now the importance of full family involvement.

There was a time when parents were the primary face of Kerry’s Place supported persons’ families. Indeed, it was their hard work and activism that led to organizations like Kerry’s Place being founded and sustainably funded by government. However, as the early persons diagnosed with autism age into their 50s and 60s, it will be the siblings and other extended family members who must step in and support their family members as parents age and pass away.

If you are a family member of someone with autism and you are reading this article, what I hope you take away is that even if you are not the primary family member involved with their care and support, one day you may be.

In addition to my additional involvement in my brother’s life and my regular communication with Kerry’s Place staff, I have volunteered for Kerry’s Place’s inaugural Family Advisory Committee, of which I have been a member since January 2019. At one of our first meetings, Sue VanDeVelde-Coke, the President and CEO of Kerry’s Place, advised that although this committee was based upon Parental Advisory Committees established within other organizations, she wanted it to be called the Family Advisory Committee to encompass all family members who may be involved in the life of their family members. Although parents are represented, the role of siblings and other family members is starting to be recognized and acknowledged.

If you are a family member of someone with autism and you are reading this article, what I hope you take away is that even if you are not the primary family member involved with their care and support, one day you may be. Therefore, ask questions about health, activities, medication, diet, and anything else that may concern you. There are many ways to become involved. Maybe you will help to take the load off of someone else’s shoulders. And you may learn things that are important and invaluable, which may mean that you won’t need to go through the steep learning curve that I experienced after the deaths of my parents. Become involved in any way you can. This is the way that you can help your family member to thrive.