If Jessica wants coffee, she can have coffee. And if the coffee keeps her up at night, then it will do so; that’s her decision as an adult.   

It's important for Jessica to be seen as the adult that she is. She's 42 and she is knowledgeable. Although she may not be able to articulate her knowledge, we want to make sure that Jessica can lead the life that she wants to and support her in doing that. This involves reflecting on who Jessica is as a person.   

Jessica knows more than we think she does. For example, I don't drink enough water and we talk about it all the time. Because Jessica understands this, she'll constantly give me water. She also knows that I have allergies and will give me Kleenex tissues all the time. These are things that she doesn't do for other people.  

I've learned to reflect more about what Jessica desires. When people ask me about what Jessica likes, it’s a difficult thing to explain because she can’t explain that herself. For example, if her toe hurts, we need to figure that out because she can’t tell us. Instead, we look for other ways she can communicate to us, including watching her expressions and body language. However, when it comes to discussing her preferences that's a little harder to interpret.   

Jessica’s ability to communicate what she wants can be hindered by a variety of factors such as her medications, which make her drowsy, or whether she is in pain, angry, or frustrated. To communicate her preferences, Jessica will say certain things, use hand gestures or push something away, etc. Oftentimes she will have small seizures that will interfere with her communication.  So, the onus is really on us watching, observing her face, and listening, to understand what it is she wants or doesn't want. But all in all, Jessica really can communicate her preferences in just a few words.  

One thing for sure is that she is a people person and enjoys being around others.  I came to that realization after being challenged at a workshop at DFR to think about what Jessica’s passion is.  Jessica likes being with people.  Over the years Jessica has had multiple experiences with small groups doing positive and meaningful activities such as with her faith community.  These experiences gave Jessica benefit while also integrating her into the community which then learned and grew from interacting with her.  These long-term relationships resulted in friends and neighbours who know her well and enjoy her company as much as she enjoys theirs.  

Jessica trusts people more when she feels that she is being listened to. If she is not included in the conversation, she openly dislikes it and may start getting frustrated.  Jessica has her own will and does not like to sit back and be quiet. She really wishes to be a part of conversations.  

Her brother and his wife are expecting a baby, so we’re actively having conversations about how Jessica’s going to now be identified as Aunty Jess, and how she’s going to help with the new baby. We know Jessica might not be able to hold the baby, but there are other things she might be able to do in her role as an aunt that align with her natural inclinations such as hand holding and giving the baby toys. In this way we can give Jessica the opportunity to develop her own relationship with the baby that is unique to them.   

 Deeply listening to Jessica, I find myself constantly thinking, ‘As an adult, what sort of decisions would I make?’ If I wanted to stay up late, I would. So, that's how I approach supporting Jessica. If she wants to stay up late, she can. If she wants to go to bed, she can. Although she isn't a child, people often treat her like one because she can't express herself very well. I find this upsetting.  There must be a recognition of our adult child's adulthood. I’m here to help Jessica be seen and acknowledged in the equitable way she deserves.  

To achieve equity for Jessica, it's important to bring her into all conversations and make sure that we acknowledge that ‘nothing about me without me’ principle. When we’re aware of something that Jessica really wants to do, we honor that. However, there are times when Jessica doesn't make good decisions. At these times, I'll give her a sort of taste of the decision that she chose herself so that she comes to an understanding of what that decision entails. It’s not about forcing her to do something. It's about making sure that she understands her own decisions, even in the little things.   

Its important to think about what will happen when I'm no longer around to assist Jessica. Who are the people that will be her supporters? What are the other things that we need to look at and put in place to keep her safe? How do we make sure that she isn't just being ‘taken care of’ but that her voice and her decisions are being honored? It's a big responsibility but I think the people that know Jessica have the capability to figure out what she wants and honor her wishes.  

It's important to have other people involved to help us interpret Jessica’s desires. They can offer insights or perspectives that are slightly different; and come up with ideas for things Jess may like to try.  I sometimes find it challenging to share control.  As her mother, I know Jessica really is at risk and vulnerable to be harmed from so many different things. However, building a circle of support around Jessica means there are more people who care about her, know her and will be able to support her in a way that means long-term goals are achieved.  

Most members of Jessica’s circle have been involved for many years; they've seen Jessica in different kinds of contexts, and they've seen how she has grown and how she has struggled with new challenges that come up as time goes by. In the beginning they just wanted to keep Jessica safe. But after all these years and conversations surrounding Jessica's goals and values, circle members are now more in tune with her.  

One of the things that troubles me the most is this notion of guardianship for a loved one considered ‘incompetent’. Laws around guardianship must change because what they essentially do is take away the rights and voice of a person like Jessica, simply because government officials think that this is the best way to ‘care’ for people with disabilities in need of support. I believe that if we make sure that Jessica is surrounded by good people who know her and are willing to take on the responsibilities of supporting her, that guardianship wouldn't be necessary.   

There is a reason why Jessica is in our lives. To teach us patience and love. To help us understand what the most important things are in life. To demonstrate how we can be authentic and honest. Our society needs that. I recognize that Jessica can share those insights with others if they spend time with her and deeply listen.