Tracy and TJ

If you can’t hear someone speak, people are more inclined to assume things about the person. TJ doesn’t use words to communicate, and because of that many people assume that he doesn’t have a voice. Over the years it’s been quite discouraging for him. Recognizing TJ’s capacity to make decisions is really important, but it can be easy to overstep, thinking that because you know him well that you can make decisions for him.   

TJ does better when he's surrounded by a circle of people that know him and listen to him. But it does take time to get to know somebody. For example, even if I were to sit and hang out with you for a month, you probably still wouldn’t know me well enough, to know deeply how I feel about things, what I like, what bothers me, and so on. So, think about how much more complicated that would be if you can't verbally tell anybody anything. Yet, support workers come and go. Often never staying long enough to really get to know him. It's a huge battle for us to find the right support team for TJ.   

When things are working out and people understand him, TJ smiles and is much more relaxed. I also find he's more patient when his supporters are giving him time to process information before moving on with an activity, or task. When asking him a question he'll look and wait, and will let us know what he is up for by using his assistive communication device. So, if he's not moving, or responding at all, it is an indicator that we've probably missed what he was trying to say. TJ’s medical conditions cause him to take longer to process information, so recognizing his nonverbal cues and giving him time to think is a huge support to him. Over the years he’s been labelled as somewhat aggressive, but I honestly think this is mostly because nobody was really listening to him. When they are, things are different.   

As his mom I was always assuming a lot of things about him. Now it's more about recognizing and respecting TJ and the way he communicates. We've also been able to learn more about his medical condition by simply listening to him more. Activities that he used to love can be difficult for his body now due to a condition called dysautonomia. This causes him to get dizzy and sick when he stands up. When people didn’t understand how much pain he was feeling, it must have been terrible for him. When we clued in and just let him do whatever he was able to do that day, life got much better. When he's feeling good, he does want to go swimming, and biking but there are other days when his heart rate shoots up just from standing. These are things that we never really understood before. Now that we’re listening to him, he will tell us what he wants to do and when. We just let him know about his options and he decides.   

Another thing that we've recently discovered is an interest in classical music. We were just in the car driving one day listening to the usual music TJ seemed to always enjoy. TJ was not feeling the best and by the expression on his face clearly not enjoying it. I asked him if he wanted to listen to something new. We put on classical music and to our amazement he was quiet and calm. Then we moved from classical to opera and he had the same reaction to it. It’s so great now that we’re able to give him the ability to make more choices around his interests. Typically, he always just seemed interested in his own music. By asking him if he wanted to try something new he really surprised us.  We continue updating his assistive communication device as needed so that he can request what he wants versus me just holding all that knowledge.  

Over the last year, we've also taught TJ how to tell people when he's done doing a certain activity. He loves to cook but sometimes his heartrate spikes because he's been on his feet for too long. In the past, people were still encouraging him to continue, not realizing that he wasn't feeling well. TJ would let them know he was done by perhaps throwing something or slamming a cupboard because he was in pain. Now he has the ability to let others know when he is finished, it has eliminated much of the communication that was being misconstrued as ‘negative behaviours’.  

TJ is also learning how to ask others for help. For example, we’d give him his breakfast and he sat there looking at us wondering why we weren’t helping him. So, we helped him understand that if he needed help, he'd have to ask for it. And because he got fed up with using his assistive communication device, he just started verbally saying, ‘Help.’ Now, whenever he needs help doing anything he'll ask for it. In the past, everybody would be doing everything for him, but now he asks for help if he needs it. This helps us all to back off and allow him the time he needs to complete tasks on his own. The more we listen to TJ and give him ways to communicate, the better it is for him. He’s got lots to say. It just takes a little bit more time and patience. But when we give him that choice and autonomy, he can let us know lots of things.   

Learning to say things like ‘I'm done’ or ‘help” may sound like a small thing, but when you think of the implications that has in someone’s life, it's huge. For TJ to be able to learn these sorts of things makes us hopeful that there's so much more that TJ can learn and say.   

We’re now working on ‘yes’ and ‘no’ responses. But we’ve realized that this is much more difficult for him because he’s not hearing it in conversation around him. For example, if I offered you something you didn’t want, you wouldn't respond with just a ‘no.’ You’d respond with a ‘Oh, not right now,’ or a ‘thanks I’m ok.’ There are so many different ways we respond to “yes” and “no” its no wonder it's confusing for him, but he is making progress.   

TJ is also figuring out other ways to communicate with people, even strangers. A recent example is when TJ went to a local farm to buy eggs. TJ is a regular customer, so the staff know him. One time he visited the farm and there was a new staff member. She said ‘Can I help you?’ Initially TJ stood there in silence, his support worker giving him the time it would take to process the question but then he saw there was an egg symbol on the counter, and he pointed to it. The staff member caught on immediately and asked, ‘Oh, you want eggs, right?’ TJ smiled in response. No words were needed. Sometimes we think that we're being helpful by responding for him, but in reality, we’re robbing him of the opportunity to connect with people.  

Recent conversations have made me wonder ‘How often do we fail to recognize people as being fully human or having any importance because of a developmental disability?’ It's been wonderful being a part of this project. Listening to the stories of other families has given me a better understanding of how important it really is to recognize TJs capacity, and make sure that his voice is being heard each and every day. Our world has gotten so busy. Nobody knows each other deeply. As a society we've gotten used to these systems that don't foster connection. When you get old, you're put into a nursing home. The same sort of thing happens to people with developmental disabilities. It’s like you’re robbing people of who they really are.   

What I'd like to see is for everybody - every single human - to have their voices heard and be a part of their own everyday decisions. It isn't until you are connected to someone, a son or a daughter or a family member that you love, who communicates in a different way, but not always given the chance to be heard, that you really start to think more deeply about these things. If you are really interested in making life better for groups of people, especially if you are in government, you must listen to them, I can tell you that they really do want to be heard, and that it truly does matter.