Is it ever... too late? | with Nancy Fuller
In this episode of MORE I ask the question, is it ever too late? Is it ever too late to build a social network?
Nancy, who is mother of 3 adult sons, answers this question and shares her family's personal journey to build more connection and belonging alongside her son, Steve, who has autism. I hope you enjoy this.
Nancy: [00:00:29] I am Nancy Fuller and I am humbled to be here today just to share some of our story. I am a mom of three adult sons. And a loving husband. And one of my three sons has autism. His name is Steve and he's 26 years old.
[00:00:51] So the journey we've been on with him in our lives has been ups, downs, challenges, blessings, but overall, a [00:01:00] really good story that's forcing us all to grow. And I don't claim that we've arrived yet, but we at least at this juncture know the direction we're heading.
Katie: [00:01:10] Yeah. So Steve is 26 and you said you've been on this journey sort of growing with him, through him, because of him. So tell me what has that looked like throughout Steve's life? What does that meant? Maybe from the time that he was born until today, what are some of the main growth points would you say?
Nancy: [00:01:31] Yeah, that's a great question, Katie. What I would say is the first couple of years from when he was diagnosed at just under age three, the first two years were probably just incredibly challenging as I look back. And it's because we didn't have a plan. And the plans that were offered to us weren't feeling right inside and out.
[00:01:55] And it was all about just get him therapy. [00:02:00] And it just wasn't helping him grow. So the first two years from age three to five, I would tell you: he was kind of just flat-lined and he wasn't talking. He was in a diaper. He had no language. He was self-absorbed and I knew there had to be more. So I was working full-time, two other children. But nonetheless, I kept searching. I just didn't like the opportunities that were presented in terms of solutions because I didn't see them as solutions. So when I stumbled over my cousin sent me a book and it was called Son-Rise: The Miracle Continues. And it's S O N, Son-Rise. I read that book and before I finished it, I knew I had to go learn about this program.
Katie: [00:02:47] So that was your first point of growth, would you say?
Nancy: [00:02:50] Absolutely.
Katie: [00:02:51] It was kind of realizing like none of this really feels right. These plans are they're just off. They're not right for my son. They're not right for my family. And then what about [00:03:00] Son-Rise resonated with you?
Nancy: [00:03:01] What resonated me about Son-Rise was, it didn't feel like we were going to force him into our world to comply in a world that he didn't understand. The whole philosophy of Son-Rise is to, if you will, get to down on your hands and knees, join him where he's at, not mimic him, but really try to understand what is he appreciating in this moment and being present one-on-one was vital. Because you can't with distractions, with too much stimulation, too many people, you can't get someone's attention, particularly with autism. It's just too hard. So what resonated with me was, we want to meet him where he's at, not forced him into our world.
Katie: [00:03:53] Yeah. And when you met him where he was, what was the journey like after that? And where was the next point of growth [00:04:00] for you all?
Nancy: [00:04:01] So it was pretty awesome that he started growing right away and we only started with a team of family members. It might've been two or three, four of us. And my husband and I went away and got trained on how to run a home-based program. And we came back, and we were all jazzed, and we would talk to family, and we were all working with him one-on-one.
[00:04:27]So we ran this program for approximately seven years.
[00:04:31] And so he grew a lot in that timeframe, but we also knew after seven years that it was time for him to try to re-engage in the school system. So we exited the Son-Rise Program in our home when Steve was in middle school. So we went ahead and moved him into a special ed specialized class for people on the spectrum in our local middle school. And what I would [00:05:00] tell you about that, that really was a big change, two things. The first thing I'll tell you is that the people were very generous. And their hearts were all in the right place. So I never want to diminish any of the teachers that connected with Steve because they were all trying a lot.
[00:05:19]But what I would say is that his learning kind of went flat line again, like before we were doing Son-Rise, it was flat. And we did Son-Rise and then it jumped. Then we go back to the school system, which is a group setting. And there's lots of people, lots of distractions, lots of overstimulation.
Katie: [00:05:43] And was this a separate classroom , like a special needs classroom?
Nancy: [00:05:46] Yes.
Katie: [00:05:46] Okay. Yeah.
Nancy: [00:05:48] Yes.
Katie: [00:05:48] So he wasn't integrated?
Nancy: [00:05:50] He was not integrated and occasionally a neuro-typical student would come in but not very often. And he craved that. [00:06:00] He would even run out of their room and go up to people and just start talking to them sometimes appropriately inappropriately just to get someone else's attention.
Katie: [00:06:08] Yeah.
Nancy: [00:06:08] So he needed to be stretched beyond where he was today at that time. And that just wasn't possible in the setting that he was in. So he made it through and graduated from high school. But I would tell you that period of time, I didn't see nearly the level of growth that we saw prior.
Katie: [00:06:32] What was next?
Nancy: [00:06:33] Yeah. We were trying to figure it out. And a lot of parents that the school system kind of directs you and they tell you to start talking to the County about your options. And we were fortunate enough at the time to get one type of waiver.
[00:06:49] And what that waiver supported in his adulthood, was for him to attend adult group programs of multiple disabilities typically. [00:07:00] And so we didn't really know we had other options. And so we started with that and we interviewed a number of places. We started with one we thought would work and the ratios were too big.
[00:07:14]It was like a one to five or something, and Steve needed a little more attention than that. So even though it was very art-based, which was really cool for him, we ended up exiting there. Then he went to another adult program and he was just with a bunch of people with special needs.
[00:07:32] He wasn't out in the community. He was being isolated. And what we noticed was he was getting bored and sometimes would have behaviors acting out. And to me, that was a direct correlation to, "this is not purposeful. This is not stimulating me. And I don't want to color this rock".
Katie: [00:07:54] He was communicating?
Nancy: [00:07:56] He was communicating through his behavior and there's one place I'll have to tell you that it was [00:08:00] hysterical. They called me up after he was doing some behaviors couple of weeks before and I'm thinking, hmm, this isn't working. And Steve finally made the final call and he went outside. They were walking outside and he saw a man-made lake and he went and jumped in the lake.
[00:08:20] So I get that...
Katie: [00:08:22] It was very typical for like a college age boy to do though, is like, this is how I'm going to rebel.
Nancy: [00:08:28] That was the mass rebel. And that is when we knew, okay. So little behaviors here, little behaviors there, Steve is sending us a clear message, "I am done with this".
Katie: [00:08:37] Oh yeah. Yeah. And then you're saying before you, like, you weren't really sure what your options were and then all of a sudden you were getting clear and direct messages from Steve. This option's not working. So you started seeking probably out some something else. And at that point, would you say it's fair to say, like Steve didn't have many connections in the community or many relationships?
Nancy: [00:08:59] He didn't [00:09:00] have any.
Katie: [00:09:01] Okay.
Nancy: [00:09:01] He didn't have any. The only connections he had would have been with staff and some of the other members of any group program. But none of those people became really what I would call friends that we would see outside of the daycare or the group care.
Katie: [00:09:19] So at this point he is probably around 25 and you're starting on a path which is towards community. And part of that is you got connected to one-on-one work with Starfire and you started exploring that together.
Nancy: [00:09:34] Yes.
Katie: [00:09:34] So do you think at that point, were you worried or were you having doubts that it was too late to start building a social network?
Nancy: [00:09:42] I did not think it was too late because I'm a believer that growth is always possible. But what I would tell you is I didn't know how to do it. So I saw the theory, and I saw the concept, and I started attending some community meetings at [00:10:00] Starfire to learn more, some speaker series to learn more.
[00:10:03] And the more I learned, the more I liked it and the more I realized, oh my gosh, it's back to one-on-one. And you know, what I really realized about one-on-one that's so special is that, that's when each of us is really seen for who we are , or understood, and we're respected. And you start to get in any ratios that are bigger than that. And each of those items gets diluted. So I knew growth could be possible for him. I just wasn't sure exactly how we were going to do it.
Katie: [00:10:42] What did it end up turning to? What path did you end up taking then? Where did you take things once you're learning these concepts and you're starting to get re-introduced to what you and Steve had done when he was a child which was one-on-one you supporting him? Now you're doing [00:11:00] one-on-one with a connector supporting him. What were the steps then? Cause you were saying, I didn't know where to begin.
Nancy: [00:11:06] Right. We've had a couple of connectors and they started showing us the way by starting to say, we have to start with a place.
[00:11:15] And we have to start with an area of focus that they might be passionate about Steve might be passionate about. And so as we knew, he liked art. It was just about putting one foot in front of the other to say, what type of art things could we explore. And what I realized, and I realized this was the Son-Rise Program.
[00:11:35] And then I realized that again in his adulthood, that this was not something for me to delegate to somebody else to figure it all out. This is my journey too. And my journey is not to do all the work, but it's to help find the wonderful people. And my [00:12:00] journey is to explain his passions and to watch for people that have a magnetic pull to him. And help make the connection happen and then start to build the places, the choices, the contributions, and gain the respect with the relationships.
Katie: [00:12:18] I think that's so powerful. You stepped into some place of ownership without being overwhelmed. You weren't saying, "Oh my gosh, this is too much. How are we ever going to get all this done? How am I ever going to get this done?"
[00:12:33] You started seeing your piece in it. Your role in it was a part of it. And part of that was inviting in people to help as well. And which is what you did with Son-Rise, right?
Nancy: [00:12:45] Which exactly what I did with Son-Rise and it was the same type of inviting welcoming spirit is what I needed to do again. So it was like the whole cycle completely repeated itself [00:13:00] from childhood into adulthood. And the power of one-on-one, the power of relationships, and the power of following your passions, those themes played out twice.
Katie: [00:13:14] How are they different this time around? Because I guess my next question there where I'd like to head is, who is in Steve's life now? And where does he belong? These are places that are new and different; and people that are new and different, because of the one-on-one work.
[00:13:33] So how has the difference between maybe the one-on-one connecting that you did, the one-on-one work you did or support you did as a child with Steve? And then the one-on-one work now that as an adult, is there a different intention behind it?
Nancy: [00:13:47] Some of the intentions are the same. The platform is different. And the one-on-one at home was in a dedicated playroom and a very tight window right of [00:14:00] space. The adult playground is the world. It's the neighborhood and it's the world. And so the platform is much bigger. And so the possibilities are much, much bigger, but the intention I think is very similar. It's to connect one-on-one with people, build a relationship, build trust, build respect. And what's different also is, we did a lot of one-on-one with Steve in his playroom in the Son-rise Program. The goal now is to do one-on-one, but to keep adding one, one at a time. Our goal isn't to go to a concert and have him meet a hundred people in one night. It's to meet one more person that has a connection with Steve that adds on.
[00:14:56] So it's just one at a time. And I think what can be overwhelming [00:15:00] is to think you've got to run some big, huge program. And if you take it down, all I'm going to do is pick one sector of his life, one place to start, and one person to help me take him there. You have the intention every morning that that person is going to show up and you followed that lead.
Katie: [00:15:23] That was so beautifully said. I think it is a long journey and that, that is one step in front of the other. One foot in front of the other is kind of how you just put it. And connections, beget more connections. But it is just taking that initial step that might be hard for people who think that it is too late.
[00:15:44] What would you say for people who say ,"I, my son or daughter, my loved one is too old that they've got no connections. We have nowhere to start." What would you say to that?
Nancy: [00:15:56] I would say that's absolutely just not truth. [00:16:00] I understand people that would say that why they would say it because it's a scary thing to step out into but it's not truth. And what I'd like to say is that one other big lesson I learned from Son-Rise that's carried me forth to be courageous in his adulthood is that I learned at Son-Rise when I would ask someone to volunteer four hours a week one-on-one with Steve; initially that was the hardest thing I've ever done. Why would they want to come do this for our family?
[00:16:34] But what I found after that person would leave our program six months, a year, two years away, they would sincerely tell me that they gained a lot more love, and respect, and just cherish that time, way more than they ever gave in time. So when I realized that, I realized, oh my gosh, this is good for other [00:17:00] people.
[00:17:00]And they will learn about just being present with one person and the power of that. So by us keeping them locked up at home safe , we're not doing our children justice, but we're really not doing the community justice because our sons and daughters have the ability to have a ripple effect in their own community of opening the eyes to their beauty. But they aren't going to see it unless they see it one-on-one.
Katie: [00:17:30] What would be a piece of advice that you've learned from this? What would be something that you would tell other people? That's maybe been something that you've heard, or learned, or grown from yourself personally.
Nancy: [00:17:42] Yeah. I mean I would tell you in thinking about our conversation in advance today, it really came to me as I sat quietly this morning of what I'd like to have written on my tombstone. And it's not that I'm there. It's who I'm becoming [00:18:00] and what I'd want it to say Katie is: it's never too late to grow, it's never too late to heal, and it's never too late to love.
Katie: [00:18:10] It's a beautiful legacy. It's a beautiful thing. It's a beautiful reminder for everyone to not get stuck.
Nancy: [00:18:18] Yeah. And it's all about who do we want to become. And growth is possible . But you have to open up your heart and that takes vulnerability to be able to open up your heart and take a risk by inviting someone else into your world, but it'll be worth it.
Katie: [00:18:41] Thank you so much.
Nancy: [00:18:42] You're welcome.
Katie: [00:18:42] Appreciate it.