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Welcome to the good things in life podcast. I’m Genia Stephen. You’re listening to episode eight. Today, I want to talk a little bit more about vision. When people talk about having a vision for the life of your son or daughter with a disability, do you know what they mean? And why it’s important? Or does it sound kind of airy fairy? Or are you confused about where to start? In episode 002, Darcy Elks describes vision and why it’s important and you can find that episode at goodthingsinlife.org/002 or on your favourite podcast platform. Today I want to talk a little bit more about why a vision for the life of your son or daughter with a disability is absolutely crucial – even life saving. It isn’t airy fairy at all. It’s actually social science. And then I’m going to walk you through some of the first steps in beginning to craft a vision of the good life for your daughter or son.
Okay, so why am I saying that having a clear vision of a positive life for somebody with a disability is crucial? Because, without a clear vision about where one’s life is headed, one is likely to follow the path of least resistance. It is kind of like water running down the side of a hill. It will follow the grooves that already exist in the ground.
Society is the groove in the side of the hill. And what path does society set for people with disabilities? Well, there are a lot of possible answers, but it definitely includes segregated and congregated education, separate recreational activities, therapies, sheltered workshops, group homes and institutions. Special places for special people. And not a lot of access to ordinary opportunities and the ordinary good things in life that we pretty much all want. And here’s where vision comes in. The water running down the hill doesn’t have to follow the groove.
It’s possible to dam up that groove to help the water splash over the edges and to create a new path. In my mind’s eye right now, I see a toddler in a yellow rubber rain jacket and red rubber boots crouched on that hill. Gently putting their fingers in the flow of water to see what will happen. That kid will call other kids over and together they’ll bring toys and sticks and clumps of grass. And they’ll create a fresh pool of water at the foot of the hill, all of their own making because they imagined a different path and then they worked to make it so. Vision is exactly like that. Do you want to end up somewhere other than where society funnels people with disabilities? Well, then you’ve got a journey to plan. You need to set a course in a different direction toward a different destination and you need to be sure that you’re clear about where you want to end up because the default isn’t very nice.
That’s why vision isn’t just a fluffy idea. Developing a vision is acknowledging that your kid’s life is flowing at high speed towards a gutter unless you clearly steer away and onto the road towards the good things in life. Now, deciding clearly where you want to end up, your destination, is the first step. It isn’t the only step, but it is the first one and if you’re like me and you love to travel and you’ve had the privilege of doing some of that, you might have had the experience of being a bit overwhelmed when trying to figure out your destination. I mean, it’s a really big world out there and there are a lot of options. But it doesn’t have to be super complicated in the beginning. I’m going to walk you through three questions that can get you started. I’ve created a worksheet for you. You can find it at goodthingsinlife.org/008worksheet.
Okay, here we go. How old is your child? This isn’t actually one of the three questions, but you need to keep your child’s age and stage in life clearly in your mind as you brainstorm. I’m going to use the age 16 just as an example.
So here’s the first question. Who are the people that are important to an average 16 year old? The average 16 year old living a good life generally has important relationships with three types of people: family, friends, and mentors or leaders. The relationship a 16 year old has with family members is much different than the relationship a two year old has with family, but family is still very important in their lives. Parents, siblings, and others still play a pivotal role in the day to day life of the average teen.
Friendships are, of course, some of the most coveted relationships for teens. Friendships exists for many teens at school, in recreation, in the neighborhood, and increasingly online. How important are friendships for people your son or daughter’s age?
The next category is mentors and leaders. Most 16 year olds spend quite a bit of time in relationship with adults who serve as mentors or leaders for them. Teachers, coaches, instructors. The average teen is influenced, hopefully positively, by many adults outside of their family. Now take a moment to write down your daughter or son’s age and imagine a group of people that age, not a group of people with disabilities, just an average group of people that age. Make a list of the kinds of important relationships those people have under the category of family, friends, and mentors or leaders.
Okay, second question. Now, let’s consider the places an average reasonably happy, we are talking about the teen years after all, a reasonably happy teen spends their time. I suggest four categories for consideration. You might think of others. So the four categories are school, work, organized, recreation and community.
So briefly, a 16 year old might spend their time in the local high school, private school, or be homeschooled. There are many typical options for education. Many 16 year olds will have a part time job. Teens are often involved in organized recreational activities like sports clubs, groups and classes. And 16 year olds are now old enough to hang out in the community to differing degrees with their friends doing things like going to the movies, playing games, or even just hanging out at the park.
Take a minute now to think about the places that people who are your son or daughter’s age spend their time. Use the categories of schools/education, work (if relevant to your son or daughter’s age group), organized recreation and community to help you brainstorm. Come up with your own categories if you think these don’t fit. And remember for younger kids, these places might all include a parent or another guardian. You’re just brainstorming the places the average person spends their time.
Okay. The third and final question. Let’s look at the kinds of activities and roles that a 16 year old has. You can think of the difference between activities and roles like this. An activity is a task that you can do. A role is something that you can be. Roles have a more powerful influence on our lives, so try and think of roles. Now, a 16 year old might have roles in several categories, school/work, relationships, recreational, spiritual, and even civic roles. Here’s a possible list.
A 16 year old might be a student, a friend, a cashier, a son, a brother, a teammate, a soccer player, a church band member, and a volunteer. If I was just thinking of activities I might list, studying, ringing out customers, washing dishes, fighting with his sister, cheering on his team, kicking a ball, playing tambourine, and serving food at the soup kitchen. We can see that the activities are kind of self limiting. Once the activity is over, there isn’t much else. But the roles can bring to mind long lists of activities, places and people. I’m going to cover the idea of roles in more depth in a future podcast episode, so if you aren’t sure what I mean about roles and activities, don’t worry too much about it at this stage. Now take a moment to think about what activities and roles the average person engages in that is the same age as your son or daughter. Remember if it’s helpful, I’ve created a worksheet for you. You can find it at goodthingsinlife.org/008worksheet.
I asked you to think about how old your daughter or son is now but vision is about setting a destination in the future. So once you have answered the three questions for the age child is now go through the questions again, but think of your child three to five years older. Now you have the start of a vision of a good future. It might still be a bit shaky. You might have a hard time believing that it’s possible. You might not know how to get there at all. But all of that is okay. The first step is really just to imagine.
My son is 12. My vision for him at 16 is that he’ll be a student in his community high school and that he will attend classes with his peers in his school. He’ll have a few close friends and a large social circle of kids who know and like him. He will be in photography club and yearbook club and his gift for seeing angles and light in a way that most of us will miss, will be acknowledged and valued for the artistic flair that he brings.
He’ll have responsibilities like homework that he will not want to do and he’ll have chores at home that he also won’t likely want to do. But he’ll do it anyway because that’s his job as student and son. He will probably still spend time with his older brother watching movies, but sometimes he’s probably going to want his brother to go away so that he can spend time with his friends. But he will want his older brother to drive them to soccer games because that’s way cooler than going with his parents – until his friends get their license and then he’s going to want them to drive him. Obviously, he’ll still be a soccer player. I have no idea how we will pull that off at that level of competition but I’m not going to think about that right now because this is a vision and as long as I walked toward it, I’m heading in the right direct general direction even if we have to detour or pivot. He’ll be part of the AV Club at church and his job will be making the light show work for performances. He’ll have a part time job. I don’t really have a vision for that. I’ll have to think about that some more.
None of this, of course, obligates my son to do any of this. He might not choose to be in the photography club or the year book club. Maybe he’ll decide that soccer isn’t fun anymore. Maybe at 16, he’ll refuse to wake up early enough on Sunday mornings to help with the light show. I have no idea and it doesn’t matter. I’ll listen to him about that at the time. But as long as I keep clear about the type of life, the kind of life, the kind of roles that I want him to have access to, and as long as I use the typical happy person of that age and stage in life as my inspiration, then I keep his options open and he can choose for from the cornucopia of what life has to offer.
Now he will face obstacles and challenges and discrimination and not every option will be available to him because of those things. But if I start closing doors in my vision of his life, then I basically guarantee that those things will never happen. I give extra strength to the obstacles, the challenges and the discrimination and that seems like a terrible thing to do. The only way to get to something good is to set your sights on something good.
In February of 2019, I’ll be opening enrolment for a course on creating a vision. I’ll walk you step by step through the process of creating a vision and provide a framework for making it happen. If you want to know when enrolment opens, go to goodthingsinlife.org/tellme and sign up to be the first to know.
Thanks for joining me today on the Good Things in Life podcast. If you’re looking for a community of people who get it and who are also seeking the good things in life for their sons and daughters with a disability, then join us over goodthingsinlife.org/group. You are welcome here.
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Started young with amazing mentors and a strong mother with a vision. Now a mother to two sons, a midwife to many, and an activist with a mission to band together with families to joyfully pursue the good things in life.