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Ten Tips to Surviving the Holidays with your Neurodiverse Family: Adding Structure to Unstructured Time
Episode 116Bonus Episode6th December 2022 • Special Education Advocacy with Ashley Barlow • Ashley Barlow
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Christmas Chaos!  It’s so normal and relatable.  But wouldn’t you rather relate to people with a peaceful heart and mind?!  In today’s episode, I give you TEN (yes, ten) tips for surviving the holidays with your neurodiverse family, but let me tell you… these tips support you are caregivers, as well as your other family members, too!  Our first ever BONUS episode is a good one indeed! 

Transcript: https://share.descript.com/view/8tN8W4Wgx2E

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Welcome back to the Special Education Advocacy Podcast and welcome to our first ever bonus episode. I am so excited to welcome you to this bonus channel. Thank you so much for pre-registering for our conference, which just taking place. January 28th. It is shaping up to be a really great conference.

this. I've got some plans for:

So today's episode, our first bonus podcast episode is called 10 Tips to Surviving the Holidays with Your Neuro Debate with your Neurodiverse family. Adding structure to the unstructured time, and on my notes, I call it Christmas chaos. I have to admit that I love Christmas. I love the nostalgia.

I love the smells of Christmas. I love the family time. I love the traditions. I love all. And I really never understood why. Some people said, oh, Christmas, I can't stand it. I used to have a lady that cut my hair who had little kids when I was in my twenties, and she would drone on and on about how badly she heated Christmas.

And I just thought that was absurd. I didn't understand how you could dislike c. And then I had Jack . I think even when I was managing Christmas with just Griffin, it was pretty manageable. But holy cow. Managing Jack's behavior, Jack's anxiety, jack's social skills, jack's excitement. All of it.

Managing Jack and helping Jack to access holidays, basically all holidays, particularly the Christmas holiday, and our family is bonkers. It is so hard, and I totally understand how some people just don't like it. They just don't like the. And because I want to like it, because I don't wanna be a Grinch, and I don't wanna be, I don't wanna say ba, but I have figured out ways to enjoy Christmas and to enjoy the holidays.

So whether it's Christmas for your family or it's some other family function, some other holiday, I hope that these 10 tips can be super helpful to you all as well. So my first tip is to create a daily schedule. I notice particularly with Jack, but also with Griffin actually, and to a certain extent for Brandon and me, that it's super helpful if we know what we're going to be doing.

It gives everybody kind of a heads up of what to expect, and it helps us to stay. I know that when the time gets unstructured, when we have all day, that kind of possibilities are endless. We sometimes just stand and stare at one another. Jack will go downstairs in our basement and watch high school musical for six hours and play with magnet tiles and not ever accomplish.

Griffin will go to practice and then he's a teenager. He will spend a ton of time on his phone and never do anything. And, we adults, I always say that I spend this time, I bet you can relate, like stuck at my kitchen island, almost like in ready position. Who's gonna need me?

What am I gonna do next? And I'm just putting out. . But if we have a list, if we have a schedule, if we know what we're gonna accomplish throughout the day, we all kinda stay on task. So this kind of mimics the way that the school day and the work day work for everybody else. And I have found that if I provide some of the structure of the school day, like a schedule that we all do, So I like to do a daily schedule.

For some children it might work out well as a visual schedule. And you might need to spend some time now before the holidays figuring out what that visual schedule's gonna look like. What are the tasks that we're going to be doing? Do I need to take pictures? Do I need to download pictures?

Where am I gonna get these pictures? How am I gonna create the schedule? What do I need to create in order to give everybody? An idea of what's gonna happen on a day to day basis. We are wrapping up the Thanksgiving holiday in our house and every day throughout the Thanksgiving week, I wrote and dry erase marker on the refrigerator, what was happening at every hour of the day.

So like eight o'clock, we're gonna play even if it's just play. That gave Jack an idea of what was going to happen. I'll tell you what, it cut down on anxiety a ton. It helped us to access the things on our to-do list, and it really helped. So create a daily schedule to mimic that work or school kind of structure.

The next thing, tip number two is to structure the unstructured time. And you probably knew I was gonna say that because that's actually in the title here, adding structure to the unstructured time. Here's the thing, when there are too many possibilities, We can all simply shut down. So it's important to allow for unstructured time in our kids' lives.

They a lot of them have very structured environments at school. A lot of them have very structured environments with their activities with tutoring and therapies. Sports and whew, it does get pretty exhausting. And so unstructured time around this time is great, but what we've gotta do is we've got to put some structure around it.

We've got to add structure to that playtime, to that downtime. So maybe what we do is we provide choices. Do you want to play a game or do you want to play with this toy? Do you want to watch a movie or do you want to bake cookies? We're providing structure around it, and then maybe in order to watch a movie, you need to sit a visual timer.

Maybe your child doesn't watch movies. I remember when Jack had a really hard time getting from start to finish in a movie. So we would actually set a visual timer and say we're gonna sit down and we're gonna watch this movie for 30 minutes, and then we're gonna take a break. You might need something that says, when we watch a movie, we eat popcorn and we get under the covers and we do this, and we do that.

So that the. Str unstructured time of watching a movie can at least be enjoyable for you so that you get rest. Also Jack and I spend a lot of time doing crafts and faking during this time of year, and the reason that we do it is because there are so many things that we can work on when we're baking and doing crafts.

So one of the things that we're constantly working on with him is completing a. And so if you're baking, it's not finished until it's out of the oven and maybe even wrapped up and put with a gift tag on it in order to go to somebody as a little holiday gift. So the actual baking process, what I do is I take the recipe and I break it down so that Jack knows what we're gonna dump into the bowl step by.

Sometimes I just say, put the dry ingredients in, put the wet ingredients in, turn on the mixer, that kind of thing. It depends on how complicated the recipe is, but I'm almost always breaking down a recipe so that he's got opportunities to help me with the recipe, and so that he's checking through this really structured list of how to do the task of baking.

It makes the project, the baking or the crafting. So much more enjoyable for both of us because I get a break, I get to do something that I enjoy. I love to bake and I love to work on crafts. And it's a really of a learning experience for him as well. So suggest activities for this unstructured time and then build structure around them.

Whatever is right for your. . Okay, so now I've got for number three. Tip number three. I actually have four different ideas here. So for tip number three, we are going to talk about filling unstructured time with. Fill in the blank. And this is gonna apply for 3, 4, 5, and six. So tips number 3, 4, 5, and six are about filling unstructured time with different things.

And we're gonna start with tip number three, which is fill the unstructured time with social opportunities. Oh man. How many of you can relate to thinking I have to entertain him or her for. Oh my gosh. How am I going to keep them engaged? How am I going to tolerate it? I don't like noack jokes. I don't like Legos.

I, Ashley Barlow do not like to play. I don't like to play. I didn't play as a kid. I don't like to play. It is terrible for me. I think it's why both of my kids like to build, because that's it has a finished project. I really don't mind building with Lincoln Logs or magnet tiles. We have marble runs at our house that we do incessant.

Jack is in a really long and strong magnet tile phase and and it's great. I like to do that, but I do not like to play. And so the thought of having two weeks off of school where I am like the best friend is exhausting. And for so many of our kids that are NeuroD. It is possible that you don't have a really strong social network for them, that they aren't, going to the holiday sleepovers and to the get togethers for all their clubs and teams and all of that stuff.

And so a lot of this social time is left on you. But one thing that we all need to work on is social engagements. I have seen through the pandemic, by the way, with a lot of my adult clients, that there is a ton of social anxiety going on, and a lot of my adult clients are quite frankly, just having a hard time leaving the house.

And so this is something that we have been working on quite a bit at our house because Jack does. Pretty pervasive social anxiety, and I don't want that to get in the way of his success. As we transition to older grades at school. He's in middle school, and I wanna make sure that his social skills are, pretty up to speed.

And so filling that unstructured time with social opportunities is something that we work on the weekends and on these long holiday breaks. The way that we do this is we schedule, I don't know what else to say, but play dates. And what we do is we will invite a friend to go on something that has a finite task.

So do you want to go to the driving range? Do you want to go to the movies? Do you want to do, there's all of those holiday outings, so maybe it's ice skating or a light tour, or the playground. Now the playground does not have a start and. And for Jack in particular, I've gotta do something with a start and a stop.

So if we go to the driving range, which is what we do often, then you hit a bucket of balls. If you go to top golf, which is a place that Jack loves to go, then you play for a finite period of time and then it's over. I want to make sure that when I do these social opportunities, because he struggles with them in part, That I've got of a start and a stop and he knows the routine.

I want him to succeed socially. I don't want him to have a ton of trouble. So for us, going to a light tour, if it was in the car, that would be great. If it was at the zoo, which we have here in Cincinnati, that's not something that I would take a friend to because Jack typically has a pretty hard time in crowds and with like Unfettered access to the entire zoo. That is a hard thing for him. Another thing that we are doing, and this might work out well for your older children, is we are scheduling play dates that are actually babysitting dates. So Jack's at the age that a lot of his friends are babysit. And we are reaching the phase in our lives where we've got a lot of access to a lot of babysitters because we know a lot of people that age because that's how old our kids are.

And so we're starting to call some of Jack's friends that have stood out as people that will be supportive of him and we're asking if they wanna come over and hang out and we'll pay. To keep an eye on him. And yes. Is that tricky? It is tricky, but we are doing it with kids that we know get it kids that understand and to make sure that it works.

We're leaving for about an hour. We've done it and just gone and grabbed a cup of coffee, which is really great. And that's giving him some unstructured time that is, fun for his friends. And of course I've talked to them. How to get him engaged in things and that sort of thing.

And typically at our house, what they do is they spend a lot of time playing in the basement, cuz we've got all kinds of games in the basement, like air hockey and that sort of thing. So that is the first one of those filling the unstructured time. with social opportunities. Number four is filling the unstructured time with giving and crafting.

This is a great time of year to do some giving. . And when we are giving, we are working on many skills. We might work on social skills, we might work on our language skills, we might work on our social emotional development. Giving is a, it evokes a wonderful feeling. So doing crafts, as I said, is a great way to structure time.

And crafting can work on so many other skills, right? So if you're working on a craft, you can work on fine motor task completion, attention span, language skills, all of those things. Also what I love about crafting is it help. Everybody to slow down and my, isn't it great to slow down at this time of the year?

So if we slow down by sitting at the table, by accessing our creativity, by calming ourselves, by engaging in a sensory activity, The holiday seems so much better. One of the favorite crafts that we've ever done is I made salt dough, which has to cost about 50 cents and makes about 700 ornaments . It is literally like making sugar cookies.

It only you make salt. Do. You can Google that. It's super. To make. And you just use your cookie cutters and you cut 'em out and you bake them and they turn really hard. And then you can make ornaments out of 'em. And one of my favorite years, we spent probably three or four days for two or three hours painting those guys.

We just put some boxes over top of the kitchen table. And we had a little painting station and it was so calm. It was so sweet. Those ornaments, we had so many that we attached them to gifts that year as like little, gift toppers. And oh man, we just slowed down so much to do that you can also make ornaments with cinnamon.

There's a cinnamon. Recipe that my kids have done in their class parties and that sort of thing that they smell really good for a few years. That's fun. It might be doing sugar cookies. It might be doing holiday crafts. We have a, Michael's pretty close to our house and I think Joanne Fabrics has these as well.

There are little kits that you can buy. They might retail. $8, but I get 'em on sale all the time for two 50. And you might be making an ornament or you might be making some kind of little knack that you can put on a windowsill or a countertop or something like that. It might be a hat or a necklace or something like that.

But they're like kits that you can do a craft. And I always go pick up a few of those when they're on sale, cuz those are nice again, they have a start and a finish, which is a big thing for. . So filling the unstructured time with giving by way of giving crafts is a really nice way for kids, especially kids that are neuro divergent kids with disabilities to access some social skills and some holiday spirit.

Okay, that was number four. Now we're moving on to number five. I feel like I should say five golden rings. I'm sorry, saying that was terrible. Number five, fill the unstructured time with mindfulness. So again, we might need to slow down. This is a crazy time of year and. It makes everybody a little bit more frenetic, and so if you can spend some time being mindful, I promise it will be better for you and for your children.

I talked to a client not too long ago who themselves that the adult themselves was having a really hard time regulating themselves and we were talking about how the pandemic had impacted. Emotionally and I, I've had some some more pervasive anxiety, bouts of anxiety, I would say than than I've had since really college, or maybe when we were advocating for Jack to get into an inclusive kindergarten.

That was pretty anxious time for me. But this kind. Pseudo post pandemic time has been pretty anxious for me. And so I was talking to this client about what they do proactively for their anxiety, and the answer was nothing. Nothing. And they said sometimes I have to I can't even watch a movie.

I've gotta get up in the middle of the movie and I've got to I'll like end meetings at work because I can't concentrate anymore. And I'm like, wow. Instead of taking a break or in addition to taking a break if you need it, you might try to do something proactively. You might try to do some yoga or access some heavy work.

Or do some breathing exercises or something, and. They called me the next week and they were like, oh my gosh, I never would've thought of that. Of course, that's what I do for my child and I feel so much better. And I was like now step two is doing it with your child. And that's exactly what I'm recommending is that.

You as a family take some time to be mindful. I actually just ordered for myself one of those eye weights that they put on you. I actually get it sometimes when I get my hair washed. My, at my yoga studio, they will put a lavender eye weight on top of you. It's there's sleeping masks only.

I think they're filled with like rice or little beads or something. They're a little bit. And I love 'em when they smell like laven. And I'm like, why do I not have one of these at my house? This is so silly. My house is where I'm supposed to go to rest and I love this thing. And it was $20 on Amazon.

So mindfulness is good for you as a caregiver, and it's also good for your children. Mindfulness is super proactive, like I said, and for our children with behavior needs, it can be proactive for their behavioral and emotional support. And it can be proactive for us so that we are more successful at keeping our emotion out of supporting them behaviorally and emotionally.

So whether it's yoga or it's breathing, or it's meditation, or it's tapping, Some kind of mindfulness is super helpful. I don't know if tapping is all that widely known, but I literally had been thinking about tapping because acupuncture is something that I love and something that helps me with my anxiety quite a bit.

And tapping basically relies on vibration through ACU pressure. And there was an app on the Today Show, it's called My Tapping Solution, I believe. And it is a paid app, but I have been doing that and I absolutely love it. So tapping is something that is new for me, but I think it is making. So that is number five, and it is filling unstructured time with mindfulness.

And now number six, which is the last one of these. Filling the time with filling Instructured time with Wamp learning. Listen, it's not fun, . It's not fun for the caregiver or the teacher. It's not fun for the student. But learning is necessity. And if we fill structured time with learning, we at least are structuring time because learning.

Are typically pretty structured, right? We have rules, we have to sit at the table or we have to sit on the ground and we might have to prepare for our learning by doing some sensory activities. And we're gonna sit down and we're gonna work for a little while. Another benefit to working on learning.

is that you are giving your child really good attention, and so if a function of their attention, of their behavior is of their problematic behavior, is attention. Encouraging them to learn is really good positive attention, right? Because you're probably working one on one with them. You're probably pretty close in proximity, like physical proximity and you are probably like just totally one on one, actually paying attention to them.

Reading your own book or something like that. And so those benefits can really be good behaviorally and emotionally for the child. Of course, when you work on learning during this time, it's going to help to prevent regression and that lack of recruitment of skills, which is always important. And, it's fun.

I think it's fun if you don't check in on, a super regular basis. I think it's fun to really dive in and at least just read together or do some math skills together, or find some holiday worksheets or holiday fun that you can do together. That makes it fun and. Probably see a fair amount of progress because your child is an entire semester in which is which is really great.

They could have some really great progress. So that is, Number. These are not numbered one through six, and so that's why I got confused. Okay, so that is number six. It's 3D on my list, but it is number six, filling the unstructured time with learning. Now moving on to number seven. Number seven. My tip number seven is to start to modify.

Oh, to start and modify your family traditions, what do I mean by starting and modifying family traditions? Remember, the title of this podcast is Surviving the Holidays with Your Neurodiverse family. And I know as well as you do that holiday traditions are very hard for many different reasons for neuro.

Of people, for people with autism, for people with intellectual disabilities, for people with anxiety, for people with social emotional needs holidays can be really difficult. And my, what I have experienced myself, my family has a lot of holiday traditions, is that if we can modify them to make them more accessible for our little.

Then we kinda get the best of both worlds because we still get to take a part of those traditions, which can be very important. And he gets to take a part in them and feel successful. And so he has positive memories as well, and we all get to be together. Children, remember traditions. If you think back to your own childhood, you might have some traditions at home or at school.

Other places in your community and these traditions can be even the smallest ones. Here's an example. A few years ago I felt a little sad because we do not have the kind of social lives that involves us going to. Friends houses for basketball games or football games or, like to watch the ball drop on New Year's Eve.

And, I think a lot of that has to do with just simply the way that we parent, but a lot of it has to do with Jack. And so you. Sad, like I miss all those parties. I love holiday party food. And I miss those parties, those family parties. I went to lots of those when I was a kid. But every weekend we had one of those big family parties.

And so one of the things that we do in our little Barlow house of just the four of us is every year we pick one night where we go drive through this late display and then we do an appetizer party. So we come home and we have. You know that buffalo chicken dip and we have a vegetable tray and a charcuterie board, and we make Dixie chili dip, which is something that is unique to Cincinnati.

But we take Cincinnati Chili and we basically, it's like that buffalo dip. So it's cream cheese on the bottom, and then it's chili and then cheese on top, and you eat it with a Frito or a A TOI or something like that. And we have those appetizers and as silly as it seems, that's something that I know I look forward to every year.

And it's a appetizer party that Jack can access with zero stress. And even that small little tradition is really really important to us. The other benefit to this, , you can model the way that you modify things for your family and friends so that they see what you're modeling so that, or so that they see what you're doing and then they can support your child themselves.

This just happened to us. One of our family traditions in my extended family is we go to this burger restaurant the Wednesday before than. My brother always says he doesn't want to eat too much poultry the week of Thanksgiving. And so years and years ago we started having burgers on the Wednesday before Thanksgiving and we go to this restaurant that is delicious, but it is really tight.

They pack a lot of tables in there and it is loud because it's got like child floors. It's a, restaurant bar and grill a place. And it is way overwhelming for Jack, particularly now as he struggles with. And so what we did this year was we let him sit in a booth by himself, and I went over and I colored very quietly with him and we had a little bag of activities for him to do and we gave him absolutely no pressure to come over and join us.

And I thought, you know what I'm doing what's right for Jack. But the really exciting thing is that other people are seeing what's right for Jack too. And at one point when I went back over to the table to enjoy the larger groups company, my nephew went over and he played with Jack and he let Jack Jack had a set of handcuffs and so he let Jack put him in jail and, pretend play with him for a little while.

And it was just the most perfect thing. And I. I, he probably would've done that had he not known. But if we were in a group that doesn't know Jack very well and I had modeled that well, somebody else might have taken that, taken my lead and gone over and engaged with him a little bit, which would've helped not only us as caregivers, but it would've helped Jack as well and would've made it just simply more fun.

Life doesn't always have to be about work and therapy and that kind of stuff as well. When you modify, you are teaching other people how to do it as well. Okay? That was tip number seven. Tip number eight is to advocate advocate. Even if it's with your family, and even if it's just by example.

If you are at a big Christmas party. Your child does not want to say thank you, or your child gets really nervous with eye contact and your great aunt says honey, make eye contact. When you say thank you. You can say, that makes him very anxious so he can't do eye contact. And that's all.

You don't have to say anything else, but you can advocate. And again, when you're advocat. You are teaching, you're teaching your child how to advocate for themselves, and you are teaching the rest of the world about your child. And by teaching them about your child, they're learning about many other people.

So whether it's eye contact at a party or it's stemming behaviors or it. Yelling or it is not participating in something, or it is sitting in the back of a group advocate for your child and help your child to feel more comfortable wherever it is, whether you're in a business or you are in somebody's home.

It can make the world a much, much better place, not only for your child, but for everybody else. Tip number nine is to make lists for yourself. So when we were up at number one, we talked about a daily schedule, and tip number nine is to have more lists for yourself. So I think it was one holiday over the summer, and maybe it was over the 4th of July weekend or.

I said to Griffin, so I, I didn't have a babysitter all weekend. I was home for four or five days and I said to Griffin, the hardest thing for me in these times when we don't have a sitter and we don't have sports and we don't have our normal schedule, is that I don't feel productive myself.

I feel like I am the master of ceremonies and that is my only. And I don't get anything done. I don't get to wash my car or to do the laundry or to do anything but cook for you guys and be at the ready to entertain and engage you guys. And Griffin said you could just write it down, write down what you wanna do.

And I was like, duh. Yes. I do feel so much better when I have a list. And so I actually wake up every morning. I try to wake up ahead of my family and I make a list of what I wanna accomplish. There might be a little bit of work, there might be a little bit of , like housework or even a project around the house.

It might just be, researching something or buying something or running an errand. I make the list and then when I check it off, I feel so much more accomplished. In addition to that, I know I'm going to get to it because it's written down. Another benefit is other people see my list so other people know that I wanna go do something.

And so Brandon might say to me, Hey, did you wanna run to Lowe's? Because I, I'm gonna cut the back grass and Jack can hang back here and I'll throw him some baseballs every once in a while or something like that. And I don't have to, communicate that cuz it's on my list and he's looked over my shoulder and seen it.

So making a list to help yourself feel productive seems a lot less chaotic. Other things that I put on my list is exercise. I love to add my exercise to my list because then it actually does get. But there might also be things on your list like the wrapping and baking cooking. Heck, even getting dressed for dinners and parties and stuff if you're going to someplace.

I realized not too long ago that, because we don't do that much socially anymore we were going someplace and I didn't have the right shoes and I hadn't thought about it. Of course, I had thought about what I was gonna wear, but I did not have shoes that were going to look okay with this. . And we had to stop on the way someplace at a shoe store so that I could get the right kind of shoes.

And so I thought, boy, before the holiday, I really need to . I wonder how many other people are in this situation, by the way. The reason is because I got a puppy during the pandemic , so he didn't go anywhere. My dog ate all my shoes and then it's taken me a while to, to build it back up the the supply.

And but I thought, boy, before Christmas Eve, when I have to get dressed up and go to a family party, I'm gonna have to make sure that I've got my my shoes worked out for my outfit. So even just putting that on your list will help you to feel more productive, which is gonna help you to feel more regulated and happi.

And able to support the other people in your family. And then tip number 10, to surviving the Christmas chaos with your Neurodiverse family is to simply be easy on yourself. This is a chaotic time. You do have a little bit more stress than the average bear. And there are more stresses at the holiday time.

And so be easy on yourself. Give yourself a break. Whether you're waking up a little bit early, staying up a little bit late, taking a break in the middle of the day, give yourself a little bit of grace and give yourself a little bit of time to just be. So those are 10 tips to surviving the holidays with your Neurodiverse family, adding structure to the unstructured time, otherwise known as Christmas.

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