#050 Why is this so hard? And what to do about it.

Genia:
Welcome to the Good Things in Life Podcast. This is episode 50. That’s right – five zero, 50. When I first started the podcast, I really didn’t know what to expect, but I’ve been overwhelmed by your support and enthusiasm and I just want to thank you so much. I’ve spent some time reflecting on the podcast. There’ve been a lot of great moments of honesty, insight, wisdom and learning. We’ve covered topics like creating a positive vision for the life of your son or daughter with a disability, what it means to be a citizen, guardianship and what it means to have decision making authority in your own life, relationship building, bringing out the best of somebody with a disability, education and inclusion, extending invitations, awkward social situations, and so much more. I’ve had so many great conversations and yet when I look back over this past year, here’s what I see in my personal life.

Genia:
My son has had really very limited support, almost none. He spent way less time with his friends than he has in years. He’s lost weight and he’s had other medical issues. I mean, on the other hand, we managed to unvelcro our son’s educational assistant from his side and replace that with mostly pure support for much of his day. That’s a big win. And my family drove across Canada and back in a 20 year-old RV with two teenage boys, sketchy WiFi access, I’m still married and all four of us don’t like each other. That’s a win. But you know, most of that time, Will couldn’t really see what was going on because of the way the RV was built and we didn’t realize it. And he missed out on so many great things to see and do because it was too inaccessible for us or we just didn’t have the energy to make it happen.

Genia:
So despite really big games and little games with big potential impact, I still am looking over this last year and thinking, “I’m not doing all the things. I don’t have enough time to do it all. I’m not doing it right. Nothing is working. I’m doing it wrong. I’ve got no idea what I’m doing.” And you know what, to a point, I’m not wrong. That’s why it’s so important that we focus on what we can do that’s going to make an actual difference. Not hours of, you know, like make-work therapy plans or fine-tuning some agency or schools goal-setting plan or hours lost on social media, lamenting about how hard things are because we already have a lot that needs to get figured out and some of it we’re not going to figure out. Some of it we can’t figure out, but some of it we can.

Genia:
If you can relate to any of this, then I invite you to join me in thinking and planning for another imperfect year in 2020. Another year during which we can’t get it all done and we don’t get it all right. And where we usually aren’t really sure what we’re doing, where tons of shit just won’t work and we’re going to make a ton of mistakes. Join me for a year of focusing on what we can do to build the foundations of a good life, family, friends, school and community. Today’s podcast episode is a long time coming. I’m not sure if you’ve noticed. If you didn’t notice. Good. I’m totally reliable. I show up here every week. Just ignore that gap. It’s definitely a tech issue. Actually what happened is that I felt like the 50th episode of the podcast should be “epic”. I’m really proud of this podcast and I know that the content, it matters.

Genia:
It’s, you know, it’s important. But I really wanted the 50th episode to just stand out. And given my reflections over all the good and the bad and the ugly of the past year, it was really struggling to figure out what would be totally epic. Or more precisely not what would be epic, but what I could pull off that would be epic. And those are two very different things. So I just decided to show up and tell you how I’ve been feeling. Now, I don’t need to be comforted so much. You know, I don’t feel like all is loss. I’m not feeling, you know, depressed or like there’s no hope. I don’t feel any of those things. But I do really feel like it’s been an important time for me to be taking stock and thinking about what I want for this next coming year.

Genia:
And one of the reason Facebook lives I did was really about addressing the topic of like, “Why is this so hard?” You know, “Why is it take so much to support somebody with a disability to have the good things in life? I mean, it shouldn’t be this hard, but it is. So I decided that instead of epic, I would just be honest. I’d be vulnerable. I’d tell you where I’m kind of at right now and I would give you access to this Facebook live that talks about why this is so hard and why the fact that it’s so hard means that we need to be really clear about our vision and we need a community of people to help us. So we’re just going to dive right into that.

Genia:
Everybody. I am Genia Stephen from Good Things in Life and I help parents of kids with intellectual disabilities to support their kids, to build good, inclusive lives in community, including building friendships and having a good, positive, inclusive education experience. Today, I am here to talk to you about why you absolutely must have a vision of a positive life for your child with a disability if you want them to have a good life. Lots of people feel like the idea of having a vision is kind of airy fairy or woo woo wee or something like that. You know, maybe it’s a nice thing to do or a nice thing to talk about, but it’s not critically essential. And I want to suggest that that’s not true. That having a vision is actually the critical first step, um if you want your kid with a disability to have a good life. So let’s get started. So today we’re going to talk about how to build a life of belonging, starting with a powerful and positive vision. It’s like I said, totally, totally critical. And I’m going to go through why it’s critical.

Genia:
So the I’m a parent. I’ll just start by introducing myself a little bit in case you don’t know me. I’m a parent, um just like you. I am not a particularly fabulous parent. I’m a very busy parent. You know, today I am coming to you from a hotel room in Toronto a few hours from my home because we are here for our appointments at our pediatric hospital. Since I left home two days ago, I have cried twice and thrown a bagel across the desk. You know, not my proudest, finest moments, but we’ve got a lot going on and there are a lot of distractions and a lot of things that get in the way of really working on building a good life. So I just want you to know like, I totally get it. You know, when my son was born, he had a lot of medical issues and you know, he’s still has medical issues and and disability.

Genia:
I also have a sister, a younger sister who has an intellectual disability. You know, I’ve been thinking about these issues and connecting with people for a really long time. And what’s that, what that’s meant for me is that I am really, really clear about what will make a difference in my son’s life. And I’m really lucky because I have people to talk to, who understand and share my vision for my son’s life. And I have a framework for making decisions that help me move towards the good things in life for my son. And I want you to imagine what life would be like if that was true for you. I hope it is already true for you, but if it’s not, imagine what that would be like. So I want to start by talking about the fact that it is possible for kids with disabilities to have good life and an inclusive life, but only if their parents have a clear and positive vision.

Genia:
And I’m going to go through some truth bombs here that hopefully are going to help you tie why having a vision is not just a nice idea, but absolutely a critical first step. So the truth is it is possible – finding places of belonging, having a life of belonging, building friendships, having a good inclusive education – that is possible for kids with disabilities. And I’ll just give you a little brief insight. I’ll tell you a little bit about our story. This is my son, Will. This is his pictures a couple of years ago. Will attends our local French school, which means that he’s educated primarily in French, although as he gets older, he’s also being educated in English. So he’s receiving a bilingual education and in an inclusive school, inclusive classroom with his community peers. And that means that he has all kinds of really rich opportunities to develop relationships and have peer modeling and to learn from and with his friends and his neighborhood peers.

Genia:
And of course, having an inclusive education means that you have all kinds of opportunities to experience all that life has to offer you to, in, um, and get that, that well-rounded education that we all want for our kids. Will also is a soccer player. He’s played on our communities, in our community soccer league for a few years now. You know, it’s not super straightforward for Will. He uses a wheelchair, he can’t walk and he doesn’t have a lot of control over his body. So we had to think creatively about how to make that happen. But we were able to make it happen. We were able to both provide him with the support that he needed and the vision to be able to help the league figure out that it would be okay for Will to play and that he could participate. This is from Will’s very first soccer game right after he got hit in the head with a soccer ball and you can see the expressions on the other children’s faces.

Genia:
They’re quite concerned about this. But this is the kind of both risk and opportunity that an inclusive life and community brings. You know, these are the kinds of bonding experiences that lend themselves to really becoming one of the team, to being known in your community by lots of people and ultimately to develop friendships and a place of belonging. Will is also a hockey player and he’s played hockey in our community hockey league for a couple of years now. This was also not a role that was super obvious and easy for him to fill. You know, Will can’t skate and he doesn’t have great control over his arms. So he’s not able to stick handle super straightforward and easily. So we had to get creative around this and that’s not something that we would have been able to figure out if we hadn’t had a really clear vision of the kind of life and the kind of rules that we wanted for Will.

Genia:
So because Will as a student and a soccer player and a hockey player and all his other rules, it also means that Will is a friend and that he has friendships that exist outside of regular and scheduled activities. You know, he receives invitations, he spends time on his evenings and weekends with his friends. And you know, this is the kind of life that we want for our kids with disabilities. And so I just wanted to start by talking about the fact that you know, it is possible and it’s possible for you. I’m not particularly special as a parent. I am, as I said, not even a great mom. I have though a couple of things that really contribute to to making this possible for our son. You know, as I said, I have a really clear vision. I have people in my life that can help me.

Genia:
And I’ve got a framework to help me make decisions that lead me closer and closer to that vision. Let’s be honest, we struggle to help our kids with disabilities to have a good life for a reason. You know, this, this is a photo of children in an institution. It’s not that old actually and we are still shutting down these kinds of places. But you know, the reality is that we are facing a long history of people with disabilities being devalued in our society. And that doesn’t mean that people with disabilities aren’t valuable. It just means that society doesn’t place high value on them. And you know, that means that people are discriminated against and that they experience high levels of rejection and poor quality services. Can you relate to any of this? I’m sure that you can. I’ve never met or spoken to a parent of a child with a disability who says that none of that is relatable or relevant to their child’s life.

Genia:
You know, people with disabilities in our society have fewer opportunities. They often experience poor quality education. They still are funneled into segregated services. As adults, people with disabilities find difficulty or have difficulty finding meaningful work and experience high rates of poverty because of that. Let’s put it in perspective this way. In general, um research shows people have about 150 relationships. It doesn’t mean 150 best friends, but it does mean 150 people who know you and who are connected to you in some sort of meaningful way. Our relationships are how we get opportunities. They, our relationships provides safeguards. Our relationships are, really are the weave of how we fit into a community. The same research shows that people with disabilities have on average about 24 relationships. What does that mean? That means on average, people with disabilities have less than one fifth the number of relationships as people without disabilities.

Genia:
And the impact of that on the lives of people with disabilities is really significant and it’s not good. So I’m sure that at least some of this is real for you and that you worry about these kinds of things. This is why having a vision is so critically important. That stark reality about the lives of people with disabilities. That’s what happens when you just follow along and you just sort of go with the flow. Now this is not to blame the parents of people with disabilities. Not at all, not even a little bit. That’s not what I mean. The gains that we’ve made in the lives of people with disabilities are largely due to the advocacy and and efforts of parents to incrementally make things better for people with disabilities and to change the world. So kudos to all the parents that have gone before us. But here’s my, the point that I really want you to take away.

Genia:
You can’t depend on society to just how, to just sort of make it happen that your child with a disability is going to have a good life. And you can’t rely on services and therapies and treatments and early intervention to help kids with disabilities to end up with a good life. If you could, then the picture that I just painted for you would be very different. It would be a lot more positive. That’s why you need a vision and it’s why you need to surround yourself with supportive people who can help you get there. I am quite sure that as a parent of somebody with an intellectual disability, you have had the experience of feeling kind of alone or isolated. You know, you might have people in your life who support you and love you and you might still not feel that connection and community and that connection and community is a need.

Genia:
It’s not just a nice-to-have. It’s a, it’s a primary need for humans. You know, those people in your life that love you but don’t quite connect. It’s so important that you hold onto them because if we’re going to build, you know, really good communities that are inclusive and who welcome our children, then we actually need to be in those communities. So it’s so important that we hold onto those relationships and those connections. But also you can find support and you can find community within Good Things in Life. You know, with people who are on the same journey that you’re, you are on and who totally get it. And that’s really critical. Okay, so now let’s talk specifically about vision. I’ve explained why a vision is so important. Now I’m going to talk about how a vision functions to make the life of your child with a disability better and to bring you towards the good things in life.

Genia:
So a vision is big. A vision is that really huge, gigantic picture. And it’s aspirational, which means that something you’re striving towards and then you need to take little steps to get there. Now a vision will act as a North star, a compass, a telescope, and an anchor. And I’m going to go through each of these and why they’re important. So a vision acts as a North star, which helps us to keep our eye on the destination. So as we are moving forward on our journey, it keeps us focused on where we are going. And that focus can help us from kind of getting deviated deviating off our path or getting confused or kind of getting allowing, you know, things that sound good at the time to make us veer away from, from where we want to go. And a vision acts like a compass to keep us headed in the right direction.

Genia:
It is so easy to take a wrong turn. How many times have you made a decision or being faced with a decision, I mean where you’re like, “Well if I make this decision, it’s going to take me in this direction. And if I take this, if I choose option B, it’s going to take me in a different direction”? A compass, a vision, acts as a compass to help us make those right decisions to keep us headed in the right direction. And vision acts like a telescope to help us see far off into the future. This is really helpful because we want to know where we’re headed in the long term because then we can reverse engineer where we need to go in the short term in order to get there. And that is really, really important. Sometimes where we are in this particular season in our life might be a bit of a bust.

Genia:
For example, maybe your child doesn’t have access. It’s just not an option to choose an inclusive education placement. You know, it’s just not available in your community or maybe you know, an inclusive education is available in your, in your community. But this teacher, this particular year just isn’t a great fit with your child. And this year is a bust. Using your vision to act as a telescope to see far off into the future allows us to see where other opportunities may lie now to keep us on track for the future. And then finally, a vision acts as an anchor to keep us steady during stormy times. And friend, there are going to be lots of stormy times in your life, in your child’s life where you really could drift out entirely to see and get lost if you don’t have an anchor to hold you steady. So a vision acts as a North star, a compass, a telescope, and an anchor while you navigate with your child towards the good things in life. So does this make sense to you? You know, can you relate to any of this? Can you imagine why in your super busy life, why having that clear vision could help actually make your life easier and save you time and energy and keep you moving in the right direction?

Genia:
And can you see how also having people who can support you in that work would be really, really important. You know, you are here probably still listening to this because maybe you’re worried about what’s going to happen to your child with a disability or maybe you recognize that all the therapies and the services and the early interventions, they just haven’t resulted in friendships and belonging. And you’re wondering, “What’s missing in this equation?” You know, and no doubt you’re here because you’re passionate about creating a good life for your child. And I hope you’re excited to connect with other parents who really get it. You know, we’re faced with two options. We can kind of go with the flow and try and figure it out on our own or we can get together with others who totally get it and we can set our own direction and work towards that.

Genia:
So that’s why I created this free guide to making the most of 2020. This free download is a place for you to start in creating a vision for your child with a disability so that you can start with the clarity you need and the time saved by having that clarity so that you can make 2020 a year where you move the needle closer to the kind of life that you want for your son or daughter with a disability. You can download the guide by going to goodthingsinlife.org/2020. And over the next few weeks we are going to delve into all things creating a vision but also really nailing down, narrowing down, narrowing down so that we get really clear about what you need to work on and how you can start making progress in a way that recognizes the multiple demands of parents of kids with disabilities.

Genia: 
Um and making sure that you are doing the things that are going to have the most impact and not spending access time on things that frankly are just not going to move the needle all that much in 2020. So goodthingsinlife.org/2020 is where you go to download that guide. And I look forward to joining you over the next several weeks and really getting clear on where we can move the needle for our sons and daughters with a disability. So there you go. I hope to see you in the upcoming weeks. Take care. Bye bye.

Genia:
All right, well there you have it. This is so hard because you know, we’re up against an awful lot. And because we’re up against an awful lot, we need to be really laser-focused with what we want our kids’ lives to be like. Because if we’re not, it’s not going to be very good. So we’ve really got to come together with other people who get it and to develop a vision and then really work on implementation. And that’s what Good Things in Life is going to be focusing on in this next year. So if you would like to join me for another year of imperfect parenting with a clear vision of the good things in life for your son or daughter with a disability, then start by downloading this guide, this free guide that I created – Setting Goals That Matter in 2020. You can find it by going to goodthingsinlife.org/2020.

Genia:
I developed it with with a lens like with, with the idea that the questions in the guide would be easy and conversational so that you can engage the people in your life, your spouse, your partner, other family members in conversations about the kind of life that you want for your son or daughter without it feeling like yet one more meeting or planning session. So again, you can find that at goodthingsinlife.org/2020. Now, the next podcast episode is with Candy Motzek. And Candy is a reformed, uh, retired engineer, incorporate who gave it all up in order to support people to live their best life and to find the good things in life. And Candy is going to be talking to us about vision boarding and how vision boarding can actually, the science behind how that can actually lead us towards greater success in achieving our vision. So I hope that you will join me there. Take care.