Behind the scenes of a helluva year

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Genia  (00:00:02)

Welcome to The Good Things In Life podcast, I'm Genia Stephen. Today's podcast episode is going to be a little different. I'm going to be talking about what's happened over the last year in good things in life, in my life, my family life, where we're at now and where we're headed. If you don't know me, if you haven't heard my story, let me give you a little bit of background

 

Genia (00:00:24)

When I was five years old, my younger sister who was about to was diagnosed as having an intellectual disability at the time, my mom had never met anyone with a disability. She hadn't gone to school with kids with disabilities. She hadn't worked with anybody in the workforce that had a disability. And to be honest, she was terrified and worried.

 

Genia (00:00:47)

Luckily for her and for my sister and for the, the rest of us. My mom reached out to an organization who put her in touch with another parent, a parent who was a little farther along in the journey and who could help my moms start thinking about what it meant to support your child with a disability to grow up and have a typical, life to access the good things in life.

 

Genia (00:01:19)

And that one connection with that one parent and that organization really kind of blossomed into a wide network and many, many opportunities to learn from disability leaders and experts and mentors, and essentially led to my mom and the rest of our family to have a world-class disability education. And so my mom's initial feelings about my sister's diagnosis changed pretty quickly, and she became and remains a fierce advocate for my sister and for others who have disabilities. 

 

Genia (00:02:03) .

So many years later, almost 15 years ago, now. I had my second son and he was born with significant disabilities and medical complexities. And the difference between where I started at the beginning of my parenting journey and where my mom started at the beginning of her parenting journey, couldn't have been more different. I already had a community of supportive people who got it. And I had already done a lot of the work of unlearning what our society teaches us about people with disabilities and learning some really important foundational ideas about how one accesses a typical life.

 

Genia  (00:02:47)

And that was really profound. My background is also that I'm a midwife. And so for more than a decade, I've been supporting other families at the beginning of their parenting journey. And what really struck me was that most of the parents who had kids with disabilities, or maybe when there was like a hint that there might be there, you know, the child might have a disability that most of those families were starting at the same place that my mom did many, many years ago.

 

Genia (00:03:15)

And so Good Things In Life is really an attempt to close the gap between the kind of opportunities that I had as a parent of a child with a disability and where many other parents start by providing access to disability experts, solid, positive concepts and ideas that can help us raise our kids to have good, positive and typical lives at the heart of community.

 

Genia (00:03:48)

So that's how Good Things In Life was born essentially. So let's kind of turn back the clock a little bit to the beginning of 2020, like everyone else, we weren't anticipating the pandemic. And when things shut down, our reality was pretty much the same as everybody else's, you know, living in this global pandemic has been a challenge for all of us and you know, our personal family story around this is just our story.

 

Genia (00:04:19)

And I know you have yours too, and I would love to hear about it, but I'm going to tell you a little bit about ours. So in March of 2020, we suddenly lost my niece who is 28 at the time. And my husband and I, and my sister and brother-in-law are now co raising her seven-year-old daughter.

 

Genia (00:04:48)

And so that was a pretty major life change for us. And of course, outside of the grief and devastation of losing my niece, of course, re you know, being continuing to be involved in raising her daughter is wonderful, but quite a shift in our lives. As you know, we've got teens and now teen boys, and now we have a seven year old.

 

Genia (00:05:16)

 Through this time, Good Things In Life has continued to publish podcast episodes. And I'm thrilled that now more than at last count, 22,000 people have listened to the podcast. We've had hundreds of people register and go through The What, Why and How of Inclusive Education, which is our foundations course, because knowledge is power. And when you have knowledge about what inclusive education is, why it matters and how to actually implement it.

 

Genia (00:05:45)

The chances are much greater that you are going to be able to be an effective advocate and member of the school team. So I'm super excited about that. And we have dozens of people in Inclusion Academy, which is our monthly, monthly good things in life membership, where we have access to disability experts, private member conversations with those people where we dive deep into ideas and concepts that are important

 

Genia (00:06:11)

And we support each other over time in our efforts to help our kids build positive, inclusive lives at the heart of community. So those are all really good things. As we moved through the summer, you know, things were going a little bit better and a little bit better.

 

Genia (00:06:39)

And in September, my son started high school. His first year of high school. What's really interesting about his educational experiences, that it has been remarkably positive with many, many successes. Although some lots, of failures too. I don't mean my son's failures. I mean, the system's failures and my failures as a parent and those kinds of things, but there's been lots of successes, but there have been certain things that have been elusive, providing my son with a really robust way of communicating.

 

Genia (00:07:08)

For example, has been something that we've really struggled with and slowly collaboratively with the school over years, we've gotten to the point where it's still not where it needs to be, but it's much better than it was.

 

Genia (00:07:38)

 And so in grade nine, at the beginning of grade nine,his teacher started contacting us about his higher-level academic courses and saying, okay, well, he's doing so well. And clearly communicating his learning and knowledge that we want to make sure that he gets his high school credits for these courses. So that was like a massive, massive when I was one so proud of my son and to so proud of the school, cause this is not been easy.

 

Genia (00:08:03)

And, and they've worked really hard over the years to get here. And another exciting win is that we, we, we think we're at the point where we really can start introducing a robust AAC system or augmentative and alternative communication system, which really should just, you know, exponentially expand Will's , Will's , my son's name, Will's access to communication to the world.

 

Genia (00:08:33)

And I'm, I'm so excited about what that is going to mean moving forward. So, you know, we, we've got, had some wins at the beginning of the school year. And then in November, in the middle of November, my sister, all of a sudden became very unwell with a condition called Guillain-Barre syndrome, or some people pronounce it, Gilliam Barre syndrome.

 

Genia (00:09:01)

And Guillain-Barre syndrome is one of those kind of hit by lightning things like you just it's random. You can't predict it. And it's an auto-immune reaction to a harmless virus. So she got a harmless virus and then had this autoimmune reaction. And what Guillain-Barre does is eat your nerves. Basically first it attacks the instillation on your nerves.

 

Genia (00:09:31)

And then if it's a severe enough form, it attacks your nerves themselves and causes paralysis. So my sister very quickly became paralyzed from the neck down and requiring life support and has been in intensive care since the middle of November. Now, if you're listening to this and you're a long time podcast listener, you might have noticed that there's been a gap in the publication schedule of the podcast.

 

Genia (00:10:02)

And this is why. So my sister has been living in intensive care and for the first five and a half, six weeks after she was admitted, the hospital would only let one person be with her for support and for a number of reasons, that person was me. And so I lived full time in the hospital. I wasn't able to return home and was just with her for that time, basically right up until Christmas.

 

Genia (00:10:28)

And then because if the, her prognosis or the prediction about her recovery is that she'll be in intensive care for a year, a year. Yup. A year. Okay. The hospital said, okay, well, you can have up to three people in the hospital or not at the same time, but people, one person can come for a chunk of days and then the next person can come for a chunk of days.

 

Genia (00:10:56)

And so what's been happening is that I'm there Monday to Friday, some weeks, Monday to Thursday. And then we have another person who comes when we get alternate weekends and another person who comes to the other weekends. So basically during the week, I'm not at home, I'm staying in the hospital about an hour from home with my sister. And so you can imagine that this put a little bit of a process and systems is dent into the way we kinda make good things in life and the podcast function.

 

Genia (00:11:33)

So what's the point here? Well, the point is, I think this is been a really good reminder for me about the importance of being connected to a community of supportive people. Because while I've had to take a bit of a break in publishing podcast episodes and sort out this new life reality very early after my sister became ill, people in my community were reaching out and saying, how can we help? 

 

Genia (00:12:10)

And so, you know, we've done a few things, you know, we've had, I've had some of the people in my community facilitate gatherings for me, provide expert content to inclusion Academy members, guest host the podcast. And you'll hear some of those guest hosted podcasts coming up. And several of those people have reached out and not just offered their help.

 

Genia (00:12:40) 

But reminded me that we're building or we're trying to help our kids build lives at the heart of community and community really is about supporting each other and that I needed to role model that. And so I'm trying to role model that, and it's been really exciting. I think one of the things that is going to make 2021 exceptional for Good Things In Life is this community rallying and participating so that it's not just my voice, you know, so that we have these guest hosted podcast episodes.

 

Genia (00:13:21)

I'm so excited about it. I think it's going to be way better than what I've done on my own. And of course, community is almost always way better than what we do on our own. Not that Good Things In Life hasn't been deeply based on community participation. It totally has, but I think this is really exciting.

 

Genia (00:13:44)

And I think that the pandemic really invites us all to be thinking creatively about how we can rally around our community, how we can rally for our community and where we can reach out to our community for help to shore us up, you know, to help us make progress and support our kids to make progress even during, you know, school shutdowns and remote schooling and recreational shutdowns. 

 

Genia (00:14:15)

And I think that we're going to learn a lot, all of us about how to strengthen, participate in and rely on our communities as we are now, you know, into the second year of this global pandemic. So where does this leave us, well for this podcast episode?

 

Genia (00:14:45) 

Anyway, a couple of things, if you'd like to be a guest host on the podcast, or if there's somebody that you really would love to hear on the podcast, or you have always wished that you could speak to let me know who that is or reach out to them directly and ask them if they would like to record a podcast episode with you. I would love to facilitate that for you.

 

Genia (00:15:10)

And I would love to consider having you as a guest host on the podcast. If you're interested and you want to think about this or talk about this, you can email [email protected] And the other thing that this means is really for good things in life is, and for me, is really thinking about how do I support members of Inclusion Academy? How do I support that community better, more deeply?

 

Genia (00:15:38)

And so Inclusion Academy for the next few months, the doors will be open. You can find out what we're doing, how we are supporting our families, thinking about progress for our kids. How we're supporting each other, how we are, you know, moving through important ideas and concepts, deepening our understanding, and really trying to, you know, get some action out of that within a safe and supportive and positive disability community.

 

Genia (00:16:09)

If you're interested in finding out more about that, you can go to goodthingsinlife.org/join. And I hope to see you in Inclusion Academy. I think that this year is going to continue to be a challenge. I think that it is going to be a challenge externally.

 

Genia (00:16:40)

And I think that that provides us with the internal challenge to figure out who we want to be in our community. Whether it be our disability community, or whether it be the broader community. I think it presents us with a really awesome opportunity to think about who do our kids want to be in their community. How do they want to contribute? How do they want to be part of building a strong and resilient fabric of community and how do we want to support them to do that?

 

Genia (00:17:20)

I really do look forward to what's coming in Good Things In Life. I'm excited about it. I've had helped to figure out some of these processes while I'm, you know, living in the hospital Monday to Friday. And I think it's going to be even better. I'm hopeful that it will be even better. February is inclusive education month in Canada.

 

Genia (00:17:53)

It's also Black History month in the US. And for both of, you know, for both Black History month and for Inclusive Education month, the focus is both on honoring how racism and ableism have affected people, but it's also about honoring excellence in our communities. And in February in Inclusion Academy, we're going to be talking about individualized education plans and excellence in individualized education plans or IEPs. And in March, I'm going to, and we'll be doing that on the pod.

 

Genia (00:18:24)

We'll be talking about inclusive education on the podcast as well. And in March, we're going to be talking about medical safeguarding, which is something I have talked about for years, but haven't focused much on in the podcast. So in Inclusion Academy, we're going to be talking about, I'm going to be teaching about medical safeguarding patients, vulnerable patients in the hospital.

 

Genia (00:18:47)

So that would be people who are vulnerable to less than typical treatment. So due to disability due to age, I'll be offering training on that. And on the podcast, you'll be hearing more about my experience of, you know, being a medical advocate for my sister and just my experience of living in the hospital and what it's like to, to provide that support and try and manage all of the things.

 

Genia (00:19:17)

So you can look forward to podcast episodes in March on that topic. Again, if you would like to be a guest host on the good things in life podcast, you can email [email protected] If you have other ways that you would like to contribute, or if you have requests, which is actually super helpful because it gives me the ideas.

 

Genia (00:19:45)

So I don't have to come up with them on my own, email me, I want to hear from you. I'm really looking forward and eager to strengthen our community. It's the only way I hope you're safe. I hope you're well, I look forward to another great year in  Good Things In Life and the Good Things In Life For Kids With Disabilities podcast and another good year, great year of coming together as a community. 

 

Genia (00:20:13)

Thanks. Take care. 

 

Thanks for Listening!

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Genia Stephen
Genia Stephen

Sister, mother, midwife, writer, speaker and perpetually curious. Dedicated to bringing you the voices, ideas and conversations of world class mentors and thought leaders in the field of disability.