On September 26, 1969, a distraught doctor informed us that Tiberius, our first child, is “a member of the mongoloid family.” We had just moved to London so that I could attend Althouse College. We knew no one in London. To the rescue came Community Living London with support.
Cathy died in 1985. Our other children, Rebecca and Tobias, were away at University. I was confident that I could handle Tye alone.
Even though he was totally deaf, couldn’t read or speak, he managed to master the schedule of the # 4 London Transit bus. Through all kinds of weather, he proudly marched down the street, showed the driver his municipal bus pass and arrived at a workshop on Adelaide St.
In September of 2011, I attended a bi-annual Planning Meeting to discuss ideas to make Tye’s life as rewarding as possible. The chair began the meeting with this statement, “John, I think that we may have a placement for Tiberius, in one of our group homes.” I was shocked. I have always worried about me dying before Tye. Here was the perfect answer. Rebecca and Tobias would not have to take on the responsibility for Tye. Three weeks later, he moved into his new home. He had 3 housemates – Andrew, Sarah and David.
While Tye was at Access – a day program at Community Living London, my buddies, all seniors, and I, transported his total bedroom and set it up exactly as it was at home.
At first he hesitated – it wasn’t his home. When he saw me at the door, he slowly entered. After a few minutes, he came down the hallway and was astonished to see his belongings set up just like his bedroom at home. I held in my emotions until I hugged Tye goodbye. I cried all the way home. That night, Felipa, a staff member at the home, called to tell me that Tye had eaten all his supper and was getting ready for bed. The next night, Brianna, another staff member, called and said, “Tye had an awesome day. He was hugging everyone, hasn’t needed to retreat to his room all day and is smiling constantly.”
His life has changed dramatically since that first group home. Last summer, he had his first seizure and was hospitalized. Like 90% of people with Down syndrome, Tye has been diagnosed with probable Alzheimer’s disease. Community Living London was there again for our family. Tye now lives in a group home that was designed specifically for people with this disease. Staff have been trained thoroughly in this field. Tiberius now needs a canvass sling and a lift to get in and out of bed; he has no use of his legs and uses a wheelchair; his food is pureed; he is incontinent; but, he interacts with his five housemates, loves going in the van, is happy most days and still recognizes me.
This is just one man and we are just one family that Community Living London supports daily.
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