From the day our son Michael was born, he began working on his independence. As a toddler, he would prefer to do things for himself rather than rely on us. As he started school and began playing team sports, he developed his own friendships and became even more independent.
Michael moved out last January and is doing well. he is happy, finishing up his four year program at BCIT, working and saving his money so one day he too can have a home of his own.
Shannon is completely dependent on us and always will be. At 18 years old, she has not started to pull away from us nor does she show any signs of independence. It will be up to us, the people who love her most, to make these difficult decisions for her: when will it be time for her to move out and begin her independent life?
We know that one day in the not too distant future, Shannon will need to move out of our family home but where will she go?
We have always made plans for Shannon in keeping with the plans our son has made and, although he made his own decision as to when to move out, we will need to work with Shannon to find the right time.
We want to make sure that when the time comes for Shannon, it will be a permanent place for her to live. That along with people that care for her, she will have the choice of where to live and for how long.
Staff will come and go but if her home remains in her control then she will have consistency and familiarity, two things that will bring us all comfort.
In order to give her the feeling of security we will need to find the resources to purchase a home for her, one that is big enough to accommodate not just the staff she requires but also the roommates who will add to her social life.
Creating a good life for Shannon equates good planning. We have to plan ahead when taking Shannon out for the day, and we certainly have had to plan ahead for her life yet to come. We have worked with a financial planner to save, to make wise decisions with our investments, and have opened an RDSP to ensure Shannon’s savings are available as she gets older. We have gone through many scenarios of where Shannon will live and how we will find the funds to make is happen.
We bought our home 25 years ago. If we decide to sell it, we could put money towards two smaller condos, which would mean downsizing for us and independence for Shannon.
We would love for Shannon to continue to live in the only community she knows, where so many people already know her. We live in a city full of hills so it is important to us to find an area that is downtown, away from the hills, so Shannon can continue to get outside, to volunteer and to visit with people in her neighbourhood.
We also feel it is important that there are activities Shannon will enjoy nearby, such as parks where children play, theatres and a coffee shop or two.
Shannon’s decision-making skills are very limited so most of the major decisions will be left to us but we are very aware of the things she likes.
As far as decorating goes, in order to keep her space young and lively we will make sure to include both Shannon and a number of her close friends, a group that has grown up with her. these girls will definitely speak up on her behalf if we make choices based on what we like, rather than what Shannon would enjoy.
This story is included in the 2014 edition of Safe and Secure: Six Steps to a Good Life for People with Disabilities. Along with a new chapter on advocacy, many useful tips, worksheets and other stories. Click here to download your copy now.