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This Podcast Series is hosted by the Individualized Funding Coalition for Ontario (IFCO). We are a coalition of people with disabilities, their families and trusted others as well as allies working together to ensure that individualized funding approaches in Ontario, support people to create a meaningful life in their community. The stories in this series showcase the many ways that people's lives have been broadened and deepened by having the support of both individualized funding and independent facilitation in their life.
Judith
(0:03) I want to welcome you to the launch of a new podcast series named This is My Story. (0:09) My name is Judith McGill, I'm an independent facilitator, and I'll be hosting the series for the Individualized Funding Coalition for Ontario. (0:19) We are a coalition of people, families, and allies, including independent facilitators and partnering organizations who are dedicated to advocating for individualized funding to be an essential aspect of creating a good life.
(0:38) You can find out more about our work by going to the IFCO website at individualizedfunding.ca. (0:48) This podcast series sets out to share stories from people and families who have had individualized (0:54) funding and independent facilitation support over time, and they will share how these supports (1:01) have contributed to the person leading a rich and meaningful life in their neighbourhood (1:08) and broader community. (1:10) I want you to know that there will be other independent facilitators who will be sharing stories from people and families and explaining the way in which they've offered them support.
(1:22) I, FCO, would like to thank Community Living Ontario for the family engagement funding and other partnering organizations that made this first podcast possible. (1:35) To protect people's privacy, we've changed people's names and left out any identifying information. (1:43) In this podcast, we'll be hearing from Mark, who is Russell's older brother.
(1:48) I met Russell and his family in 1997 when a small family group invited me in as an independent facilitator to engage their sons and daughters in imagining what their adult lives might look like as they began leaving high school, and then supporting them to take the next steps in terms of building work, volunteer and leisure roles in their community. (2:15) It has been a privilege to walk alongside Russell and his family as he's grown and matured. (2:22) Russell is a remarkably capable man with lots of joy and zest for life.
(2:28) His family has been devoted to ensuring that Russell lives fully and meaningfully and that he guides his life and sets a clear vision for the future. (2:38) This has truly been an inspiration for me. (2:42) Let's begin.
(2:44) Let's start with the role that you've taken up during the pandemic and until now with supporting Russell to take back and re-establish some of the roles that he has had for many years in his life and the impact that the pandemic has had.
Mark
(3:04) The problem is that I've been kind of in survival mode because of the fact that I'm working and there's only so many hours in a day and I'm not really doing any of those things well.
Judith
(3:14) You've had endless demands and there was a time when you could focus and dedicate yourself just to Russell and now you find yourself supporting both Russell and your mother as she figures out how to deal with the experience of dementia.
Mark
(3:32) It's an appreciation for mothers now, the mothers that work full time because I'm just like I totally get it now. (3:40) I've just realized it's hard for me to just even significantly clean up the house if I have to do because I have to get them ready day to day and I just realized, oh my god, this is what mothers do. (3:54) This is hard and I'm tired and I get it, yeah.
Judith
(3:58) You are in the sandwich generation that isn't coping very well because it's too much. (4:04) Your life gets eclipsed and stolen in a way.
Mark
(4:08) We live in a complicated world and I like to think that when we honestly talk and people(4:14) are willing to share everything and not just what they're safe because I just tell people (4:21) like, you know, I told you now I'm struggling, I'm like you will never notice because you (4:25) just look at me and you see what you want to see and because I am like still to this (4:29) day a dominant act, that's all you want to see and that's what you will see but if you (4:33) actually talk to me, that there's a lot going on but I always wear it well because of the (4:40) fact that at least I have an osteopath and I have a physiotherapist and I have a massage (4:45) therapist and I'm seeing these people on a regular basis so they are always taking care (4:50) of me.
Judith
(4:51) As a team.
Mark
(4:52) Yeah.
Judith
(4:52) To just make what you're doing possible.
Mark
(4:54) Yeah. (4:54) The good thing is that I am good at finding the moments because of the fact that I play (5:00) soccer and all of a sudden this means a lot more so Thursday nights, Sunday mornings when (5:04) I play, this is my time and I'm going to start training shortly or now that I'm not working (5:12) I could kind of get back to it and people say yeah you need to train because those hours (5:16) that you just really focused on just you and just trying to reach your fitness goals and (5:23) some of these life goals that I'm still trying to fulfill, that pursuit of that is also something (5:28) where that kind of takes you away from all of the responsibilities for a couple hours (5:33) and it's just you.
(5:34) It's like alright and I'm going to start going back to yoga class and trying to structure (5:39) my life around my self-care and maintaining my emotional well-being and at the same time (5:47) slowly start circling back and say so look at all of these things because I'm like okay (5:52) we got the most important thing so the time that I have been around the home so I could (5:59) see how the day and where the gaps are and what needs to be done so I really do have (6:07) a really good understanding of what was happening and what needs to happen going forward to (6:14) make sure that we are now not doing what my dad specializes in and we're just trying (6:20) to get through the day. (6:21) I'm like okay we know how to get through a day and now I want them to live their best lives so now we know how to survive and do the bare minimum and now I want them to I really want them to have much more of a fulfilling purposeful day.
Judith
(6:39) Mark how do you go about taking direction from Russell?
Mark
(6:43) Yeah he gets frustrated and he shows me I need to get out of here I need to live my (6:48) life and I can see my future is not with you guys and because when I take because I (6:54) took out with me and I was telling them like I would do so much more of this with you if (6:59) honestly they could let go of you but and I think he's trying to say yeah like in his (7:05) own way like well yeah I want them to let go of me because I want to spend more time (7:10) with you just doing age-appropriate things and being around people my own age and people (7:15) that are like living this life where they're not at home with their parents at eight o'clock (7:21) on a Friday.
Judith
(7:22) What are some of the adult roles that Russell plays in his life now?
Mark
(7:27) Zion picks him up and so Zion would either ride bikes with the Lord right now because (7:32) it's cold he takes him to Sky Zone comes back and he goes out with Shawn and then Shawn (7:36) a lot of times take him to the track and he goes to the track track is the one place where (7:41) he's free because he's track he'll just run around the track and then you'll just look (7:46) I don't need to hold your hand I don't need to micromanage you I don't need to tell you (7:51) how to do this when to do this so you just do it you know whatever your heart really (7:56) you know wants in the moment.
Judith
(7:57) He's been a trampoliner now at Sky Dome for many years.
Mark
(8:02) He just goes to a trampoline and he jumps for an hour obviously somebody will tell him at the end like yeah we have to go home eventually but other than that.
Judith
(8:09) Would you see him at Sky Zone being understood for how capable he is? (8:14) People know him there?
Mark
(8:16) Oh the people that the problem is that they have different people cycling in and out but the people that are there regularly they see him they know him and they recognize him because obviously as he's not he's a lot different than anybody most of the other people that come in there and that. (8:31) I think one time you said he bounces 600 times in an hour oh no no way more than that there's like 3000 because he was like 60 60 times 60 so 60 times a minute times 60 minutes in terms of just like you know frustration or sensory overload like all of that stuff gets.
Judith
(8:52) What else are you noticing about what he wants to do and who he wants to become?
Mark
(8:58) What I am noticing he is trying to talk to me because I guess he knows I'm the only one who's actually really listening to what he wants. (9:05) He's been trying to tell me well two things one that he wants to go someplace he would (9:11) just he'll stop me every once in a while and he typically what he will say is tree and (9:15) tree just means like Trinidad but Trinidad it represents a lot of things as it represents (9:20) I want to go somewhere I want to travel I want to stay at a hotel like I used to I want (9:25) to this pre-pandemic life when we were traveling I think the last place he's been to is when (9:33) we went to South Carolina to visit my cousins well that's the last time we traveled for (9:40) pleasure or leisure he loves to stay in hotels and he likes the swimming pool and he's been (9:46) telling me that a lot because when I was trying to clean up the basement there was some suitcases (9:52) there and then again he's telling me he points to the suitcase where do we go and somewhere (9:56) he really wants that and then the running room thing we looked into they run on Wednesdays (10:02) we went up there and met with the group just to see what it looks like because it's not the (10:08) same location where he was very familiar very well known
Judith
I remember not long after he joined
(10:15) the other location he was invited to become one of the main pacers which meant that he would set (10:22) the pace for the entire run and people would aspire to keep up with him and really highly
(10:30) valued that contribution
Mark
hoping to establish like the same kind of dynamic there they have a larger (10:38) group there and they seem like it's the same thing in terms of different abilities and they all (10:44) really support each other and I know that I will get it in there and do what he does and we're (10:51) gonna try and start on that next Wednesday get him up there and resume that particular (10:57) day and roll on his life so we bought some stuff a lot of some shoes and (11:02) a lot of one of the reflective jackets because he's been trying to tell me that for a week he (11:07) wants to really establish himself more in terms of these are the things that uh that I really want(11:15) to do that that I need help with and definitely doesn't want to be ignored how does he make that (11:23) known to you oh you just don't just say the thing over again with the running room every time we pass (11:30) by the store he would just he would continue the point and you just let me know so I know that it (11:36) means more than just going in there that is what happened to this part of my life can we get back (11:42) on track and basically start doing those things again if we can do some local 5k races because (11:49) we used to we used to do that we went in I think about three of them it is a big thing with many (11:55) people in terms of you run in this sense of community there's all these people and get to (12:01) the end and they give you a medal and just the encouragement the togetherness it means the world (12:06) this is a place where you know you're accepted and validated and at the end of the day with all (12:12) of the crappy things going on in life just to be in this place where it's there's warmth and
(12:17) just good feelings all around
Judith
russell has had so many different art coaches over the years since (12:23) he left high school and i'm wondering what this latest man has brought to his life and his interest
(12:30) and passion for art
Mark
right now they're just doing drawing he he will draw something and then he will (12:38) do it line by line and get him to get him to make the pattern and then after he does the (12:45) pattern dot by dot he will connect it so he's drawn a lot of cool little things and when he's (12:52) done he just takes those papers and he's like like they're prized possessions even gladstone's tries (12:58) to take his drawings and then he'll take those too he's like no i want all of them and then (13:02) you could see yeah it does satisfy something that has been greatly you know overlooked and neglected (13:09) and an aspect of his life that that truly has been missing not even recognizing that (13:15) that he does have this incredible interest and passion and something that's really important to to him
Judith
(13:20) mark how would you describe your long-term imagination
Mark
long-term what i would
(13:30) like my brother to have an opportunity to really live the life that he always wanted to live(13:39) and i don't think at times we as a family have been truly you know locked in in listening to(13:47) what he really wants because he was not able to so freely articulate what he wants in words (13:56) over the years that we've learned to to listen to him and i really think that at this point in time (14:04) my brother is ready to to really be on his own and he sees himself as as a fully developed (14:13) competent adult who just needs the proper supports financial supports and support workers in order (14:20) for him to you know to be truly happy and to really for the first time have to have the adult (14:28) life that i think that truly that he wants in his heart and i think some of that is rightfully so (14:35) and it's more than age appropriate my brother's 45 years old and he wants distance from his parents (14:41) i honestly believe that he is just tired of the way he is being viewed by them because it doesn't (14:50) matter how many times i say you know he's a man and so i think that's one of the reasons to why (14:55) my brother is gravitated towards me is because i'm one of the ones that actually like okay you (15:01) are 45 if i looked at myself at 45 these are the things i'm doing and this is how i'm living and (15:07) and he just wants those same things so i see that he wants his own space and that he wants to pursue (15:16) his interests and he can't really do that if he is you know still under the watchful eye (15:24) of my parents who just want to protect him from the world when he wants to be out in the world (15:32) well there's nothing important to him and he's older and i think that now it matters a lot more (15:38) than than it did back then because this is your life without your parent and that's what we're (15:43) studying you up for and i want you to be content and i want you to be secure to ultimately feel (15:51) good going forward like we're gonna be fine i just think that he's a lot he's so much more aware (15:56) than what i could ever really he just knows that his future is i guess with me yeah and he knows(16:02) that and i'm just telling him
Judith
you and me brother we're gonna figure it out
Mark
yeah and i've told him (16:07) yeah so i know you're watching this happening it starts with me getting the basement taken (16:13) care of i'm gonna have to tell my dad she's coming down here we used to bake all the time (16:18) we used to make cakes and i don't know what happened i know that kitchen and that space (16:24) is underutilized hey fine let them go downstairs and let them go he will be he would be happy
Judith
(16:30) because downstairs initially and that whole imagination was an early leaving high school(16:37) we're fixing the basement up so that can be his pad his suite his apartment yeah and then it slowly (16:44) got taken over he never really got to inhabit the place except for he we had his support circle (16:51) meetings there yeah for years and help them think about how do we take this back yeah and you're (16:57) saying take it back so your mother can also benefit from supports there yeah so because i
Mark
(17:03) just think that there's my mom i like to think that yeah i don't even think i i believe that(17:08) my mom is still my mom still wants to be this woman that she was and it's like she just needs (17:13) help so it's even if they're baking and it's like here i just want you just just stir this or pour (17:19) this i'm trying to be sure that there's certain routines that i'm just like okay like this is what (17:26) we do this is how we do it and and she's capable of just doing as much as she humanly can and she (17:34) again she comes to life when i'm there and okay so mom here we go we're going to wash our hands (17:40) make sure our hands are clean and then the beautiful thing about my mother is is that (17:44) when she looks in the mirror and she sees herself she laughs it's like and i was you know so in a (17:50) way it's like that i want a concept if you looked in the mirror and you just looked and like what (17:55) you see all right so she sees herself after she washes her hands and she washes her face and (17:59) brushes her teeth she's laughing and smiling at herself or you know she just or sometimes she (18:07) thinks it's a different person but the person that she does see she likes that person so i'm just (18:13) like okay so i want to keep that obviously she doesn't recognize herself but she what she likes
Judith
(18:20) that's essential yes so you've helped her hire three different supporters they're all helping(18:27) her out in the world and the accompaniment means everything to her right yeah the females
Mark
(18:33) it's like she sees them as soon as they open the door she's and her eyes and they're just like oh (18:38) and they give her a hug and i'm just like yeah and then i look at my dad i'm like that's what we can't (18:42) give her mom i tell all the time i'm trying i'm trying my best but i'm just like yeah but i i can't (18:47) replace the love and the bond and the warmth that you have with your sisters and and i don't even (18:53) know what that is um what is it what that truly meant in a house full of guys yeah yeah we had (19:01) female family and just i just know that that needs to be an important part of her day those hours (19:08) where she's just like okay you know what i could just there's this infusion of of warmth and energy (19:15) and and positivity and companionship and everything else Judith
so family and trying to keep it
(19:21) whole
Judith
initially you'll re-establish the basement as his and then what about the long term when (19:29) your parents are no longer there what do you and your brother imagine no
Mark
well long term long term
(19:38) there's like two possible scenarios so one is for him to uh to continue to live in the basement (19:45) and then the possibility of of either somebody else living upstairs but it's just to have a (19:53) have a clear separation between upstairs and downstairs so if it means breaking the walls a (20:00) little bit so that they could have a second entrance into the basement so it'll be more (20:05) like a legal you know um basement dwelling apartment so that so that somebody can just (20:13) easily just walk through the back and then be able to take my brother out so the support workers (20:20) would be able to come and go without having to go through the front door and down the stairs (20:27) to make the two spaces separate dwellings all together so that that the support workers can (20:34) provide the 24-7 care that he needs he would be able to fully pursue all these things without (20:41) having to deal with everybody else on the ground floor and on the top floor he wants his own space (20:49) that he can command without having to accommodate and kind of look over his shoulders i want my (20:55) brother to unapologetically just be who he really wants to be
Judith
let's talk about his work life what (21:02) might be possible?
Mark
at this point more than anything else that's probably the the piece that is missing (21:09) that my brother just feels that he does have an inherent worth that he wants to work and he has (21:15) a tremendous worth ethic he listens he follows instructions and he's a very diligent tireless (21:22) worker and i think that he wants an opportunity to utilize those skills in a proper workplace so(21:30) that is next piece that i'm really trying to to put in place for him that that he wants to work(21:37) just like many of us this sense of just contribution and having a work environment (21:44) and just be productive and do the business that needs to get done in previous generations he was(21:51) working in various places i want to work and be needed and want to have an opportunity(21:57) he needs funding for some poor workers to say hey can you go on this work environment(22:02) watch over him and put him in the areas where he needs somebody to speak for him(22:08) other than that keeping a watchful eye and supporting him so that he can have that normal(22:15) life that other people can do on assist he wants the same thing it's just that he needs
assistance and
Judith
he's re-establishing his community at the new runner's store (22:25) there is sense of community already and i'm wondering if he could do stocking work or (22:32) unpacking there because they already see him as part of their community
Mark
yeah so those are
(22:38) for those opportunities for him where he can naturally just step in and just say i'm going(22:44) to come in here probably be your best worker because of the fact that he's more grateful(22:49) for this opportunity here he is going to actually work really hard and he's not going to be lazy (22:55) this guy will work until you tell him to just stop working that's kind of who he is and how
(23:01) he basically does everything he does it 100 percent
Judith
i'm wondering when you look back where do you think (23:08) you would be your family would be without the funding to have community support workers (23:14) alongside russell as he pursues his passions
Mark
without the support we would be in a very dire
(23:22) situation because of the fact that as much as you would like to have a family of people who(23:30) can provide that care and support on a consistent basis with without the money people aren't going (23:37) to do things out of the goodness of of their heart on a consistent basis and they can help (23:44) you out in emergency situations or i could come in and fill in here and there but the money is (23:49) just giving me so much confidence in terms of really being able to go forward and and to really (23:56) put some concrete things in place because when i talk with people that's the first thing that (24:02) they bring up i'm willing to do this can meet these conditions they want to know that they are (24:08) going to get paid and get paid timely and get paid consistently what is done is it is just managed (24:15) it's giving me the opportunity to move forward at a much faster pace and then i could if i was (24:24) lacking resources and then trying to figure out well this is the plan but how am i how am i going (24:32) to implement this and have something sustainable if i'm always constantly trying to figure out how (24:39) am i going to fund this and support this we have a budget that i can work within so that i can see (24:45) what i rightfully can do and easily do and then what is a little bit more of a challenge the (24:51) funding is everything because if you don't have the funding then you're operating on what ifs and (24:58) more like a dream kind of like a fantasy the the idea of trying to do something and the reality of(25:05) actually having everything in place to actually make it happen and implement it though the(25:11) beautiful thing about our whole situation is that when i'm talking with anybody and like saying (25:16) money is not the issue they're really the major issue is trying to find good people and it's much (25:23) easier to find good people if you have you have money there's there's still a lot of good people (25:28) that's the one thing that this whole process is is that i know that there are still really good (25:35) people that have you know that have a heart of gold do really want to help and make a difference
Judith
(25:41) one thing that i would like to hear from you you mentioned all the things that keep you being able (25:46) to do what you're doing what about this role how would you describe how it's benefited the family
Mark
(25:51) up until now and at least you as you take on this succession work at the most basic of levels
(26:00) with these situations that are very difficult in terms of dealing with trying to take care of your (26:07) family on a day-to-day you're worried about the future and and what it could look like and just (26:14) to have somebody who can confidently speak on these other things that you need to be aware of (26:21) going forward and we're going to start you don't have to do this on your own and do trial and error (26:28) and play with the resources and the experience that you have where you can just say okay i've (26:35) seen this situation many times so these are the things that you need to be aware of going forward (26:41) here like here's a plan here's a blueprint here's a foundation that we can start building here so (26:46) that you're not reacting to something that is inevitable for parents like this is the cycle of (26:53) life and this is what you need to do in order to handle this in a much more intelligent manner (27:01) right now this is what i'm dealing with my dad doesn't want to deal with the future i need to (27:06) deal with the future it's not going to stay the same life doesn't stay the same things aren't (27:10) stagnant we need to be ahead of things we need to have a plan and not react to a crisis down the (27:17) road i just know that you're making sure that this is going to make sure that you're not going to be (27:23) trying to work out of a crisis that that we know where this is going and when at least (27:31) obviously death is is we can't escape that and things are going to be painful but you but you (27:38) know what's worse is not to be prepared at all and then didn't leave anything for my brother and (27:43) i'm like who's taking care who is are they taking care of them are they trying to take advantage of (27:49) them is he someone that just just unhappy and anything with my mom probably the most important(27:55) thing is is the potential that you know we see things through our own eyes and then you're trying (28:00) to show something like that that it can be more ambiguous especially with my brother yeah different (28:06) because in a lot many ways as he's gotten older like all he wants to want to be treated the same (28:10) as everybody else and seen the same way as everybody else and respected appreciated like (28:15) everything else when you always tell him he's like yeah okay he has to be more than somebody (28:19) who you're just taking out that he has to be seen as somebody who is contributing and valued and (28:26) respected in the community you always from circling back and reminding us so more than that is (28:33) probably the greatest thing that you brought to me and his partner getting by and (28:36) and we're meeting some of the scenes but you know it's reminding me to be so much better (28:40) and this is how you can make it better and this is what you have to open your eyes to (28:44) in terms of you know what is possible and to talk to people that there are good people out there that (28:50) will well that they're in that vision and and making the realities it's also we're just so (28:57) protective of them trust a lot of people but i know that there's a lot of good people out there (29:01) and it seems like that's the beautiful thing that's happening like i have a lot of good people (29:06) coming that want a relationship with them yeah because they see there's a two-way so it's like (29:11) no trust me i i get from your brother because your brother is happy and it makes me happy (29:16) yeah we're here and we're fine in this moment let's enjoy this moment
Judith
and he's definitely
(29:23) of this moment guy
Judith
thank you so much mark and i'm sure that you've inspired many people and (29:31) families by just sharing truthfully as you have your tenacity devotion and determination (29:40) has really brought russell back into finding his way again and i want to recognize with that jacob (29:49) his other brother spending every weekend there in a loving and present way with him and your mother (29:57) this wouldn't have been possible your dad's contribution and also your mom's niece who (30:03) came for six weeks who really brought a whole lot of hope and warmth to the situation
Mark
(30:13) no thank you for the opportunity and i am definitely grateful for your help not only (30:19) now but over the years and i know you are a whole house of knowledge and my family is able to do (30:25) what they are able to do because of all the time that was with you now throughout the young adult (30:32) life and now that he's approaching 50 that you've been with us all along and it has made a huge (30:39) difference i am thankful that my mom has spent a lot of time learning from you and and you showing (30:46) them where where the government supports are it's much easier to initiate things and to further look (30:53) into things and put things in place when you're not trying to find out where to start or where (30:59) are we going to get the money to even get this off the ground we are definitely appreciative (31:03) that you've been in our lives and helped us along the way and you continue to help us