I'm not going to live forever.  Knowing this begs the question, What's going to happen to Kirsten when I'm not around anymore? My other kids understand its important for her not to end up in a group home situation; so we're on the same page about that. That is where the conversation started and why being a part of this is important.  

Kirsten doesn’t use words; however, she has always been one to make her own choices and decisions. She's a person with very strong opinions and she's not shy in expressing them. She's not rolling over for anyone.  

There was one time when I had hired this new support worker. It was the summertime and Kirsten enjoyed going out to the baseball diamond to watch kids play. Sometimes it was baseball, sometimes it was soccer; she just enjoyed watching because she's a people person. So, I instructed the support worker to head out and listen to Kirsten. Go where she tells you she wants to go and stay there as long as she wants to stay. I made a point to state that she needs to listen to Kirsten – and listen well. So they left, and they had been gone for over an hour when they came back. The support worker was laughing and said, ‘You set me up! You didn’t tell me she liked Dominion!’ (a local supermarket) She explained that they had been walking passed the store and Kirsten began to holler. Anytime that they turned back towards the store, Kirsten would stop. It took her a couple of tries to understand that Kirsten wanted to go into the store. So, that's what they did, then they proceeded to the baseball diamond. That’s the moment when the support worker understood that Kirsten knows what she wants.  

Kirsten has always been quite clear and vocal in expressing herself. When she was in school, she had this assistive device attached to her wheelchair that she used when she would read books or interact with others. Unfortunately, when her schooling ended, her communication seemed to end as well.   

It has taken forever but now we are in the process of making Kirsten’s communication passport and working on helping to bolster her ability to communicate. My hope is that working alongside Bridge Point in implementing communication opportunities or tools for Kirsten will help give her independence. I'd like for her to communicate what she likes to do rather than having her do what other want to do. It's a small step but it comes with huge hopes.  

Kirsten is quite an expressive person and she's somebody you enjoy being around once you get to know her. She's lots of fun and I wish for others to see that and see her; to be able to share that enjoyment with her. At the moment she spends too much time with me. Most 35-year-olds want nothing to do with their parents, they want to be independent and go out and learn things.  

There might be times when I fulfill Kirsten’s every wish, but I know that there's a world out there that won't do that for her. There was a time that I had sent her to a group home; a place where you'd think they have all the necessary resources for people like Kirsten. One day they called me and said that she was really sick; she was vomiting badly. So, I called a wheelchair van to rush up there to see her. Once I arrived, I noticed that she was in a room all by herself, isolated from other clients and staff. I'm there to pick her up and bring her home and so when she gets into the van she immediately begins to laugh. That's when I realized that there was nothing actually wrong with Kirsten. The staff and workers just didn't know her, and she found a way to get them to call me so that I could come and bring her home. And it worked! But who knows what future situations lie ahead where I won't be able to be there. This is the reason why I'm really adamant about bolstering her communication because I believe there's a lot more going on in her head than we are aware of.  

The opinion that people hold when they interact with Kirsten is that there is something wrong with her, but there is nothing wrong with her. She’s just being herself. Not everyone appreciates that.  

Because they all grew up together, I think my other children will help others see this too. They grew up seeing how I interact with Kirsten. Her and her brother Albert are quite close, given that they’re just a year apart in age and they shared things. He's kind and gentle with her. So, even with all his current responsibilities, I believe that he's going to slip into the role that I've had for so long quite easily. He knows her well and will be able to support her.  

My hope is that I've instilled enough in my kids that they know to respect her and her decisions. It really is just a hope at the moment because when I'm not around anymore, the decision will no longer be in my hands. So, all I can hope is that my other children will be there for Kirsten and that they will respect my wishes.  

I actually know of a young woman who lived her life, then her mother passed away and her sibling came in and took that power away from her using guardianship. It is so sad to know that people end up in certain situations because their decision-making power has been taken away from them. From the day Kirsten was born, this has been my biggest worry for her. What will happen to her when I’m not around anymore?   

That’s why I take her places and let people know that she does indeed have an opinion. When we are out and about, I turn to Kirsten and direct any question asked to her. This is so that people can see that it’s her decision to make; not mine. This is to demonstrate to them that Kirsten has the capacity to make her own decisions.