We’ve reached that time of year where it seems everyday is filled with planning and prepping for upcoming holidays and family gatherings. This can be especially stressful for those with intellectual or developmental disabilities and their caretakers. What do you do if your loved one doesn’t want to wear a Halloween costume? Doesn't like anything prepared for Thanksgiving? Or your family gets frustrated that an individual only spent 20 minutes at family Christmas? We have answers and real-life examples for all that and more from our Boundless experts, Kristen Messer and Kelli James, and Janet, a parent of an adult with autism. Listen to this episode to ease some of your holiday stress.
We’ve reached that time of year where it seems everyday is filled with planning and prepping for upcoming holidays and family gatherings. This can be especially stressful for those with intellectual or developmental disabilities and their caretakers. What do you do if your loved one doesn’t want to wear a Halloween costume? Doesn't like anything prepared for Thanksgiving? Or your family gets frustrated that an individual only spent 20 minutes at family Christmas? We have answers and real-life examples for all that and more from our Boundless experts, Kristen Messer and Kelli James, and Janet, a parent of an adult with autism. Listen to this episode to ease some of your holiday stress.
Well with Halloween set to kick off the fall trick or treat and then winter holiday season, we have to begin this podcast by asking a very important question to our guests. Kristen, you have to start us off. What is your very favorite Halloween candy?
Kristen Messer:Blue Sour Patch Kids.
Scott Light:Wow, that is very specific. Okay Kelli, your favorite.
Kelli James:Oh definitely a Reese's Cup.
Scott Light:Okay, Janet.
Janet Tucker:I know this is very controversial, but candy corn.
Kristen Messer:Janet, no.
Scott Light:Wow.
Janet Tucker:I know, I know.
Scott Light:That got a look from one Kristen Messer here, that did I wish we had cameras rolling here in our Boundless studio. All right, we'll let the candy debate go here. Okay, we're gonna come back to that at the end of the episode, but let me properly now introduce the voices you are hearing, and also let's welcome you here to Well-being: a podcast brought to you by Boundless. Boundless is a nonprofit that provides residential support, health care, autism services, day programs, counseling and a whole lot more to children and adults. Our mission is to build a world that realizes the boundless potential of all people. I'm your host, Scott Light, our guests today. Kristen Messer is clinic director of Elm and Kelli James is peer and transitions supervisor, both of them right here on the Boundless campus. Plus, we also welcome Janet Tucker, a mom to Adnan. Adnan has received Boundless services here, kind of on and off we'll say for many years. So welcome all it's good to have you here.
Kristen Messer:Hi, Scott.
Janet Tucker:Thank you.
Kelli James:Thank you.
Scott Light:Janet, why don't we begin with you, we'll move candy corn aside again, we're going to come back to that. Tell us about Adnan.
Janet Tucker:He is 24 years old, he is on the spectrum, high functioning, very likable person. We've had many ups and downs through the years, the goal of trying to meet his needs, and that's been an ever changing thing. Because, you know, at one point we could get him to participate or, you know, get his attention with KitKat bars. Okay, so I stock up on KitKat bars, I've got them, you know, coming out of the cupboards, well, then he decides he doesn't like KitKat bars anymore, so we move on to cheese puffs. That's kind of been our life story is just like trying to find what really works with him to get him to want to participate and understand, you know, society and, and what his part is.
Scott Light:Is this time of the year, you know, we started this episode talking about Halloween, we've got holidays coming. Is this a tough time for him? Is this a celebratory time for him?
Janet Tucker:I wouldn't say it's a tough time for him, because at this point, he just likes to give out Halloween candy. So we've gotten to that point with him. But the challenge is for the family because we celebrate with, you know, he has older siblings who have spouses and grandchildren and you know, in-laws and all that, we all want to celebrate together. So we pretty much start planning now to, you know, what is going to work with Adnan, you know, there's been years that we've had to change Thanksgiving, you know, we'll have Thanksgiving on Tuesday or the weekend before, and then we'll have Adnan's Thanksgiving with the family, you know, with just like three or four of us on Thursday. So it's been, it's a challenge for us as parents to make sure that we're meeting the needs of the family because, you know, the siblings have, this is their life, too, has been their life their entire life. So we've, you know, I need to take into consideration what they need and their concerns, but also make sure the Adnan is a part of it, his needs are met. So that's really the challenge that we have this time of year.
Scott Light:Well, and you kind of encapsuled what we're going to talk about in this episode. We're going to talk about how to celebrate, how to have inclusive holidays, what do families, who have a loved one with autism, what do they need to be more comfortable in the communties in which they live? Plus, how can extended family members and the public help with all of this, too? We'll talk about sensory friendly environments and gifts, as well. Kelli, let's come to you because Adnan is in your program here at Boundless. Tell us about that program, and then also tell us about his participation.
Kelli James:So he is in our peer mentoring program. And that is something that our peer mentors work on social skills. And I was actually talking to Janet about how it can be beneficial to work on those skills to generalize over the holidays. And so working on communication skills and relationship skills, to be able to feel comfortable around other people to be able to participate in group conversations, and really feel like they can participate in their family get-togethers, and interact with other people. And also understand the nuance of things like gift giving, and being at a table with other people for a group meal. And those different soft skills that they might not have been explicitly taught in the past.
Scott Light:And you know, there's a lot of nuance with Halloween coming up, in fact, it's just days away. Costumes, they're very colorful, people put elaborate and sometimes very loud displays on their front porches, or maybe out in their yards. Kristen, all of this, though, that can be overwhelming for someone who's on the spectrum.
Kristen Messer:Absolutely. And I think like Kelli said, this is a great learning opportunity for both the person with autism and the community, to see how to interact with them, and for the person with a neurodiversity to learn how to interact in these situations. So we work on communication, which is a big one. Age appropriateness, you know, Janet and I were talking earlier, and she mentioned that, although her son's 24, they went to Chuck E Cheese for his birthday, and, you know, in society's eyes, that might not be appropriate, but we're looking at the interest of the individual, and how to help them be a member of society in ways that they can feel that they're included, and still with their interests.
Scott Light:Janet, was that a little bit of a, let's call it a learning opportunity for the folks at Chuck E Cheese to have a party for 24 year old?
Janet Tucker:Yes. And you know, and I got a call from Chuck E Cheese after I've made the reservations that, you know, she asked me a few questions, and she said, "So, you wrote 24," And I'm like, "Yeah, he's 24. He's on the spectrum." So, they were very considerate of that. And they did go out of their way to make sure that he felt very comfortable and did have a great
Scott Light:That's great. That's great. You said that party. Adnan likes to give out the candy at Halloween.
Janet Tucker:Yes, yes. That's where we are at this point. Yeah, he likes to be at home and give out candy. But we've, we've come you know, it's been a process, like, through the years, he was Spider Man for like four years. But it's kind of hard to find a spot as Spider Man costume for an XL man. But you know that's what we've had to do.
Scott Light:You know what? You do what you got to do.
Janet Tucker:That's right.
Scott Light:Let's talk about some of the finer points here of Halloween, where we are on the calendar. Some kids, maybe, can't wear costumes. And also let's remember this, maybe don't just automatically say to the group that comes to the door, you know, say to that group,"Hey, say 'trick or treat,'" because some of those trick or treaters are nonverbal.
Kristen Messer:Absolutely, yeah, I think kind of that awareness of knowing your audience isn't always a typical, developing kid who's going to come up in the right costume and say "trick or treat" and "thank you" and it's not because they're being rude or because they don't want to say those things, but they may not have that skill. One of the things that we practice here is we do a Trick or Treat within the center. So, we make sure that everyone has that experience who wants to participate in kind of a safe space. And we practice with saying "trick or treat" either on their augmented communication devices, or we have a talk button that just says "trick or treat." So, we work on a lot of things like that, and also just walking up to strangers can be a big deal. The costumes can be hard because of sensory issues. There's all kinds of different things to think about with all of the holidays, but especially with Halloween things are loud or scary, or you want to be the same thing for five years in a row, because that's the way that you do it. I'm Spider Man on Halloween and I go trick or treating. So being kind of stuck in that rigidity as well.
Scott Light:One thing that I found a little nugget here and feel free to chime in any of you. Something that's caught on over the last five years or so is a blue pumpkin, as in the plastic pumpkin that many kids carry around their candy haul. This started in Louisiana, in 2018 as well as a way to raise awareness on how autism-spectrum disorders may impact Halloween festivities. In fact, now some families are even displaying blue pumpkins, in their yards on their porches, patios and things like that. That's terrific. Right? Just to bring that awareness.
Kristen Messer:Yeah, I think awareness is kind of the biggest thing, and then dealing with that acceptance as well. And so knowing that it's a safe place and having those signals of this is a place I'm not going to be judged. This is a place where they know what going on.
Scott Light:Speaking of getting out, and not just a night to collect candy. Kelli, tell us about the Girls Night Out event.
Kelli James:So, Girls Night Out is a 12 week program for teenage girls, and we will be expanding that to young adult women as well. We go into the community to learn self-care and social skills. We really want to foster relationships in the community. It's a group that has girls with disabilities and mental health challenges and without disabilities. And they go to places like the hair salon or cafes, to set goals, or a place to have a personal fitness class. So it really fosters those relationships. And in our current group, the girls are hugging each other and taking selfies together, and making plans for outside of our group. So it's been a really wonderful experience. And it really has given girls without disabilities, the experience of realizing, 'Oh, hey, they're like me, and we have commonality,' and also giving the girls with disabilities and mental health challenges the opportunity that they might not previously have, you know, they might be going out to dinner only with their parents and not with girlfriends, and now they're given the opportunity to go out with same-age peers and have those social experiences.
Scott Light:Janet, on that note, what do we need to know in the greater population here, for Adnan when he goes out to restaurans, goes to get a haircut, goes out in the social group, what helps him?
Janet Tucker:We prepare before, that's a big thing, and plus the repetition. One of the things that we, that we have to work on with Adnan is he wants to hug everybody, there is not a stranger in the world. So you know, that we kind of keep that to family, and then people that are working with him. So that's one thing we have to work with. And the other thing is the issue that we've run into in the past, when we get to the restaurant, he is ready to order. He don't want a drink, he doesn't want, you know, you to bring him a menu. He knows what he wants, and he wants it then. So, sometimes it depends, most places that we go to know that but some, some places we'd like, just let them know ahead of time, he's not going to want to wait to order with the rest of us just bring his food when it's ready. And you know, we have to be flexible in that way. And he's really good about, you know, we like for him to be polite at the restaurants when he's out. So we try, he's very good about saying, "Yes, ma'am,""Yes, sir," "Thank you for bringing our food," and "You're doing a great job," and those type of things. And that makes him feel more like he's a part of it.
Scott Light:That's good. Kristin, what else? What would someone with autism want the greater, wider public to know?
Kristen Messer:To let them be involved in all of the things that everyone else is involved in. Just because we maybe can't stay at a family party for Thanksgiving the whole time, that 10 minutes that we were there is a big deal to us. And being able to practice in those small little chunks of time to overtime, then, you know, maybe be able to stay a little bit longer next year and be able to interact with different family members. I think that, you know, they want to be part of it just like everyone else.
Scott Light:Well teed up the very next thing I want to talk about, so let's expand a little bit and let's go from Halloween, let's now talk about, I can't believe we're talking about Christmas and Thanksgiving. Already here, but we are entering that time where the gatherings get bigger. And let's face it, there's more pressure, right? When there's a big meal involved, maybe and when family members are driving in or maybe even flying in from another part of the country. There's a lot of pressure at this time of the year. For people who are on the spectrum, they may want that interaction. Of course, they want to see their family members, Janet, to your point, they want to hug those family members and welcome them into the home. But that large gathering can still be a stressful thing for them. Right?
Janet Tucker:Absolutely. Yeah, we start planning ahead of time. And when we make plans, we know that we need to have backup plans also because that, you know, what we what we decide and what we think is going to work sometimes just doesn't work. But you know, we've done a variety of things. Like I said, we've you know, we've done Thanksgiving for him on one day and like, you know, my daughter's in-laws come in and that's just a large gathering of people and my son and his friends and it's just a lot of people, so there have been years when we've had to do Thanksgiving, you know, just a small family members and then Thanksgiving, you know, with the full family, so it's just adjusting to what they can deal with. And one year we, he used to do Dominoes, so my daughter cleared out her basement because he stacks them up and like knocks them over. And he will work on that for hours and hours. So my daughter opened up the basement and set it up. And he just spent the whole time we were together doing Dominoes. So at the end of it, we got to all go watch him knock down the Dominoes. So that was his, you know, that was that meant to him that meant he gets to be a part of it.
Scott Light:That's great.
Janet Tucker:And he really loved that. Yeah.
Scott Light:Kristen, Kelli, I think Janet's got this figured out, A) massive preparation. Have a great plan, and then have a backup plan.
Kristen Messer:Absolutely. And a backup plan and a backup plan As Janet was saying, his way of interacting and a backup plan.
Kelli James:Right. That is part of our peer mentoring program is really giving them the skills ahead of time and working with them on being able to generalize those skills. So we don't just sit in a room and practice those skills, we're actually going out into the community and experiencing larger crowds and talking to unfamiliar people to be able to generalize them across different scenarios, and then hoping that they can apply those skills to their family gatherings, instead of feeling like they're unprepared, they have those skills. And being very open with families on the skills that they can use to better prepare their loved ones for those gatherings as well. with them was doing the Dominoes in the basement, he maybe wasn't upstairs with everyone, you know, part of the conversation, cutting the turkey, and maybe didn't even eat the turkey, you know, we're just there being part of it in their own way and letting that be okay. And that's a win. You know, we don't have to necessarily eat turkey on Thanksgiving, maybe it's cheese pizza, and that's, you know, the food that they eat, and but they're still there and being part of it. And I think any amount of, you know, being in that area and kind of interacting with the family is a win.
Scott Light:And Janet, you've probably have many examples of this, but maybe could you share one where Adnan has been in a clinical program, and then you've seen where he's come home and applied what he's what he's learned. Kelli and Kristen, I know from previous podcasts
Janet Tucker:Yes, that's I mean, that's been huge, in the and just being involved with Boundless over these last several years. You talked to folks here about being self last year with him working with I Am Boundless, because he advocates, and to say to the group, but you know, certainly started out. I mean, even last year, he was, you know, not very independent, you know, he wanted everybody to, you know, well, in a polite way, if they don't want to certain food, they can you know, helped me brush my teeth, what helped me put my shirt on. And now he's got to the point where he's like,'Well, I'm an adult, I can I can do this myself.' And, he's even thinking about getting a job, which is huge, because we've tried working with other programs, great programs, and he's just like, 'I don't want to work. I don't want to get a job.' So yeah, we've come a long ways with that. And to your point, you were talking about having other food we've had, you know, the full spread Thanksgiving dinner, and he's like, 'I don't want to eat anything,' so we made scrambled eggs in the middle of Thanksgiving dinner. So, that's just kind of, you know, that's what you do. I feel like we've you know, we're at a good spot right now, I don't knock on wood, because it changes every minute. But I just kind, to go back to the younger individuals that you're working with here at I Am Boundless and the parents out there, you know, when we used to have people come in, I would have to explain to them when you come to my house, you will be wearing him. Because you know, he will be you know, either sitting on you, on your shoulder, on your arm, you know, laying on your legs, it's just kind of, you know, that's just who, how it was. Yeah, absolutely express that.
Kristen Messer:100% and it sounds like Janet is a great advocate for her son. And I think that's so important for parents to let them interact however it is for them and that day and that time and that minute because it changes, like you said, so quickly. So I think it's just important for everyone you know, to accept them. Fair isn't necessarily fair as what I tell a lot of the siblings of the kids that we work with. Everyone needs something different to be able to handle a situation and you know, it might not be the same for everyone.
Scott Light:Speaking of different things, gift giving can be different for people on the spectrum. What about those sensory friendly gifts, as again we're getting into the gift giving season, what should we know here?
Janet Tucker:To ask him what he wants and to let people know what he wants, because clothes are not a gift you know if you give him clothes is going to be like, you know, it's going to be a big deal. This is a shirt. This is socks. This is a shirt. I'll wear a shirt every day. Give me a gift, give me a toy. So the discussion beforehand and, yeah, it's I mean, it's great, you know, the work with the program and they can kind of teach him that if you get a shirt to accept a shirt, which is a challenge, but that's always the learning process.
Kelli James:I also think that we need to take into account special interests and not forcing them to accept a gift necessarily, that is not within their interests, we want them to feel like they are accepted by their families and friends to be given something that they will like and use, as well as something that contributes to their life in a special way.
Kristen Messer:Yeah, I think the same thing, you know, if he wants a gift card to Chuck E Cheese at 24, do it up, like he's gonna go there and use it. I think that's great. If you're looking for general things, you know, if you're on Amazon, or any of those things, fidgets are always great. Yep, we use a lot of weighted blankets to help, and those are, you know, more readily available now. We also use a lot of like sensory bins. So it might be like a bit of rice, which seems so silly, but it's fun to play with or like Orbeez, and water beads. And those kinds of things are way more available than they were before. If you go to like Five Below or even the Dollar Tree, they have fidget sections and like sensory sections now, which is so cool. Because now our kids are like, 'Oh, there's something I like to play with.' And you don't have to search at a teacher's store for it or, you know, scour the internet for these therapy sites. It's more readily available, which is really cool.
Scott Light:What about arts and crafts?
Kelli James:Yes, definitely.
Kristen Messer:Yeah, we do a lot of that in my program, for sure. And I think those are huge skills, you know, cutting and writing and it leads to these bigger skills. My kids love to paint and be messy, and it's okay to be messy. And I think it, you know, opens the doors for a lot of their creativity of, can I put the rice in the paint? Absolutely. Do it up. Can I put Play-Doh in this bin of feathers and see what happens? Yeah, go ahead. So I think letting them like explore those different craft items too
Scott Light:I still love Play-Doh.
Kristen Messer:Me too.
Scott Light:Play-Doh's fantatsic.
Kristen Messer:The smell when you open it, like a fresh jar of Play-Doh.
Scott Light:It is. It's like the new car smell. It just, it never gets old.
Kristen Messer:And they have so many cool ones, now I have glitter Play-Doh, tie dye Play-Doh. It's cool
Scott Light:It's fantastic. Yeah.
Janet Tucker:I have to be controversial again. As a parent,
Scott Light:Oh, here we go. I was like, 'Oh, I don't know." It is tough to get out of the wash. Yeah. It can be tough. Janet, as we start to wrap up our conversation here again, you've got two experts here in Kelli and Kristen, is there anything that you want to share with them in terms of lessons you've learned from home, that maybe could be incorporated here on the on the Boundless campus,
Unknown:It's a hard balance, because, you know, when you have other children, you have to, you know, this individual is a part of their life, and sometimes that's not the easiest, you know. Sometimes they've had to take the back seat because of it. So even as adult children, you have to take into consideration their needs. Plus you need to meet the needs of the individual. So it's a tough balance, you know, you have to take, just take everybody into consideration like I said, you know, two Thanksgivings, or even another thought that I had when you were talking about Halloween earlier is if it's overwhelming to go from house to house, maybe do like a trunk-or-treat in the neighborhood or, you know, at a local church or a community center or something and then that way they are not, it's not an overwhelming event that we have to do. But you know, it's something that we're meeting their needs. Still meeting their needs, still letting them participate and feel like they're a part but not overwhelming them and having them act out and have a rough day.
Scott Light:And you can find trunk-or-treat events in so many cities and towns, nonprofits are doing them. YMCAs, community centers, Boys and Girls Clubs, they are pretty omnipresent out there, these days. Kelli, Kristen, any final thoughts from you? You don't have to but if you'd like to share a final thought feel free.
Kelli James:I definitely think that programs at Boundless, like Girls Night Out do offer that opportunity for families to have time to be with their other children or do self-care themselves, because they know that their daughter is in a safe place, with other girls having a fun time in the community. So that is also a place where the girls can learn those skills and find natural supports to also help them through the holidays, where they have friends that they can exchange gifts with. They have people that they can invite over for family gatherings and say 'Hey, this is my friend,' but giving families that opportunity to do their own self-care and have their daughters in a safe place. I think that's been really impactful as well.
Kristen Messer:It's cool to hear these programs too, because you know, I work at the opposite end of the age groups where I have the babies. And we're working on skills that seems so small, but will build into being able to go out into the community and do trick-or-treat and all of those things. So it's cool to talk with Kelli and see the kind of the end result of what I'm starting and where it'll go.
Scott Light:This has been a great discussion. Thank you all for being here. This is terrific. All right. So let me book end it here. We started with Halloween candy and we're going to come back to one last factoid, I did my research here. The five most popular Halloween candies nationwide this year are expected to be at number five, Kristen just for you, Sour Patch Kids. At number four, Skittles. At number three, this one surprised me, Hot Tamales. Is that one surprise you guys?
Kristen Messer:It's worse than candy corn.
Scott Light:Oh, shots fired. Shots fired. Okay, at number two, I think this is solid m&ms. A classic, right? Classic. At number one, Reese's Cups.
Kristen Messer:Kelli you win.
Kelli James:There we go. Yes, I am right.
Kristen Messer:Always.
Scott Light:Is anyone surprised, Snickers not in the top? I
Kristen Messer:I was.
Kelli James:That was surprising. Especially Hot Tamales.
Kristen Messer:Yeah, where did Hot Tamales come from.
Kelli James:Let's just replace that with Snickers.
Scott Light:I also read. Okay, second factoid, I promised you when I'm giving you to bonus, state of Oregon, evidently they pass out full size candy bars.
Kristen Messer:I'm moving.
Scott Light:What, mic drop in the state of Oregon. How about that?
Kelli James:Wow.
Scott Light:Yeah,
Kristen Messer:Go Oregon.
Scott Light:Go Oregon. Again, thank you all for being here. To our listeners, we always want to thank you and remind you that you can be part of episodes to come you can email us your questions or comments at podcast@Iamboundless.org. This is the Well-being podcast brought to you by Boundless.