From My Perspective Series – Interview with Maria

Maria is a Special Education Transition and Vocational Coordinator supporting young adults with autism. She is also a parent of two boys with autism. Maria shares her thoughts on self-care, why it is important to find something that works for you, and how enjoying quiet time together has become a weekend ritual to support the health and well-being of her family.

Transcript

[BACKGROUND STATIC, THEN MUSIC] 

SIMON BUEHRER: From the Family and Community Outreach Center at OCALI, this is From My Perspective. Our Inspiring Change podcast series focused on amplifying the voices and lived experiences of people with disabilities and their families through stories that inform, challenge, and inspire. 

[MUSIC]

JEN BAVRY: Welcome to From My Perspective. This is OCALI's Family and Community Outreach Center podcast. In these podcasts, you will hear from people with disabilities, their families, friends, coworkers and neighbors. You'll hear about everyday life, their passions, their interests, their opinions. You'll be inspired. You might laugh or cry. But most importantly, you will better understand what life is like, from our perspective. I'm your host, Jen Bavry, Program Director of the OCALI Family and Community Outreach Center. During this episode, we will focus on the importance of self-care. With me today is Maria, who is a special education transition and vocational coordinator with a local school district, supporting young adults with a focus on autism. Maria is also a parent of two boys with autism. Welcome, Maria, to OCALI's From My Perspective. 

MARIA: Thank you for having me. 

JEN BAVRY: Maria, I'm sure you know self-care is so important for the physical and mental well-being of any individual. I'm also sure you know that it can be a challenge at times to include it in one's regular routine. Sometimes even more so for those with autism in their lives. The experiences and emotions one might feel can make the ability to practice self-care seem somewhat out of reach. Oftentimes, the focus, especially for parents and caregivers, is on the needs of a loved one with autism, setting aside his or her own needs while recognizing the impact it is having on your own self-care. As a parent, what are your thoughts about self-care for you and your family? 

MARIA: I think it's those things, like you said, that it's definitely hard to begin to practice, especially in the beginning years when there's a fresh diagnosis or when you're not sure what's going on, ages of 2, 3, 4, we're in the midst of, I don't know what's happening. What do I do? Who do I go to? Even for myself, who, as I have said, I'm in the business, even for me, that was hard to get to how do I do something that is going to take care of myself, that becomes non-existent. I think it's just as the years go on, you start to realize how difficult life has become, so you start to seek out different venues. Everyone's different. I have said people like to do, whether it's walking, it's hiking, it's reading a book. My thing is probably more solitude and quiet because our household can be quite hectic and busy, if you will. Lots of sensory issues, so you're in that heightened state at all times, so I like things that help just bring more quiet to my life. Probably about five, six years ago, I started acupuncture, which really was a very great thing because it was quiet. I was able to feel like I was getting some health benefits, feeling run down all the time. I wasn't necessarily doing something extra productive. I was able to just relax and have that quiet time to myself. I would say that had a real strong impact on just my health and my well-being. 

JEN BAVRY: You're right with the fact that sometimes there's a challenge with all the stuff that's going on in the busy life with a family, busy life outside of the family. Are you actually able to recognize those moments in your life when self-care is needed, and what does that actually look like for you? 

MARIA: I think you always see that this is a time where you need that quiet or that solitude or that self-care moment. But because I think moms in general, but especially moms of children with autism, Again, that's that caretaker role. You do tend to put yourself a little bit last. Even though you recognize it, you might not do things for a long time. That's a challenge, but I do recognize it pretty quickly. It's just a matter of getting to that place of when can I make time for it? Because I think that's also the challenge between doctor's appointments, therapies. I'm working a full school day, and frankly, some days I'm just, as I say, autismed out. At the end of the day, I'm just wanting to get to the home and just be quiet and have some space to myself. Lot of times, that's how I will do the day, is end it on a quiet note. I think that's the best way for just all our family. It's just to come and be together and just to be quiet in a way. In the summer, it's a little easier because there's less hectic to the end of the day and preparing for the next day. That's also a challenge. But I think it's there and you just try to plan for it. We're very planful because we have a routine, a strong routine. I think most parents could probably identify with that routine. In some ways, it's nice because you always know what to expect. But then when any little thing becomes different or there's a different change in the school routine, the breaks and so on, you just have to, I think, sometimes make a little bit more effort. 

JEN BAVRY: I know that in itself is the challenge, but I like how you talk about the fact that it's that quiet time. Just having that quiet time at the end of the day and in some ways, it seems like a simple thing to add in, but I'm sure at times it can be ... it's not always guaranteed. If you don't have that opportunity for that quiet time, are you okay with the fact that it didn't happen and try to build something in for the next day? 

MARIA: Yeah, I think, and getting to the weekend is definitely, I think, when it doesn't happen that day or that evening, it's about making it to the next ... What's the next hurdle? Usually, it's getting to that weekend. One thing that is hard and I think, again, a lot of parents might identify is, sometimes self-care is about being with friends or meeting girlfriends. I have a lot of that. Let's go out to dinner. Again, frankly, I'm so exhausted at the end of the day or at the end of the week that that's a hard, even though that's self-care, it's still an extra activity. For me, I regroup in that introverted way of just trying to get to be just in, like you said, that solitude and that quiet time. That often won't happen on the weekend. I really preserve our weekends to just come back from the busy week and then to prepare for the next week. If I don't have that, it's very difficult. If our family doesn't have that, it's very difficult, because, again, they are so used to being on the go. As I have explained to families in my advocacy work in the school district, it's about understanding what it takes for our kids to get through the day. Getting to the weekend, it's really important to figure in those quiet times even just for them and just to regroup and have downtime. I think that's, to me, just simple downtime is very important. 

JEN BAVRY: What does a typical weekend ... look like as far as downtime for you, downtime for your boys? 

MARIA: Sometimes it's ... we live here in Clintonville, and so it's nice. We'll take walks down to the ravine when it's nice out, watch movies. That's a really fun thing to do. It's so close and we walk and we order pizza, maybe a game night between all of us. Then just watching movies, hanging out. I think, again, it's just that time together is just really valuable and it's a hard thing for those who are outside of, I think, understanding the realm of autism because a lot of families are on the go and their families can bounce back from that. Whereas, I feel like our family, our kids, myself, can't do that as easily. If we have a busy weekend, then we go into a week that's very busy for them. That makes it harder, I think, to then come back from that. It just makes it a little more challenging, the sleep gets disrupted. You have to build in that time for downtime for our kids and our family because there's so many other challenges physically, and then medically, that if you don't get that, then it sets off a spiral. I wish I could have everybody understand that life of the medical challenges and the sleep challenges because it makes you seem like, they just want to do their own thing and they don't go out and do very much. It's not that I don't want to. It's just that I can't. I have to preserve our sanity, if you will. 

JEN BAVRY: Well, but it sounds like what you guys have also created is almost a thing to look forward to with the weekend. You have this busy week ahead of you, but everyone in the family looks forward to that weekend downtime. If you do get out to a movie, that's just a plus. If you take a walk. I think it sounds like you have created this ritual or routine that your family looks forward to. 

[OVERLAPPING] 

MARIA: Sleeping in on Saturday. It's funny because we're a night owl family by nature, so we then tend to love to sleep in. Doesn't bode well for our middle and high school kids, and myself as a high school person. That's also a sense of the recovery that we need. I think just that being able to sleep in, hanging out on that Friday night and ordering pizza Friday night. The biggest thing is to figure out which one gets the pizza because there's as you may know, each one likes a particular pizza place. We have to figure out who ordered it last week? What do we get this week? If we can all agree on that, but it's not beyond ordering two different pizzas from two different restaurants. I think many families may recognize that as a common thing. 

JEN BAVRY: Different meals for everybody so that you can enjoy the moment together. [LAUGHTER] You've mentioned different things that you're currently doing, acupuncture, the quiet time, the family rituals. Is there any other self-care habits or things that you've tried that worked in the past or maybe didn't work? 

MARIA: I think that I also have another added little challenge of being a breast cancer survivor. I think that adds a whole different challenge in medical care. Before, I used to really try and do yoga, whether that was outside of the house, or a lot of times it was too difficult and I wanted to do that in the house. But since the multiple surgeries, it's been a real challenge for me. Again, that could be just that solitude and that quiet time, just coming from that sense of how challenging it was to recover and also take care of the kids during all that. 

JEN BAVRY: You talked about how self-care works for your boys. Have you had an opportunity to work with the students that you support or the families that are involved with the program that you're in on self-care? Have you been able to ... 

MARIA: We talk about that, but I think it's a common theme that with the many barriers our families face with their children with autism, sometimes that self-care, I think it's the one thing that gets lost in the journey. It really, as I stress, because there can be a lot of heightened anxiety with the students and our children, it is about just helping to remain calm and how do we ... that self-regulating thing that we become good at of what is it that they need? Do they need time to pace? Do they need time? How do we get them to self-soothe a little bit? So it really becomes one about educating that it's okay, because a lot of times you don't realize. I don't think I realized until I may have even met you at some of the autism support groups that you realize not getting sleep is a common aspect to our children. Just understanding and recognizing that it's difficult is the first step in saying, now what can I do to look at that journey of self-care? 

JEN BAVRY: You make a really good point about the autism support groups. I think that's helpful to know that there's another parent or another family, another individual that's facing some of the same things. 

MARIA: Again, I just stress that I think that when we don't do very well at taking care of ourselves, that we do risk the dysfunction in the family. It becomes a more difficult thing for our kids to function at school and for the parents themselves to deal with certain aspects. I worked with an older young woman with autism and during her anxiety, I said, sometimes the only thing we have is to breathe and just taking in the moment and when you're stressed. I have to sometimes remind what I give my students and families is something that I'm also telling myself at the same time, which is important because, again, I go back to how often we lose touch with what it is that we need ourselves. When you're reminding someone else on that, it's also becoming about here it is. You're telling yourself that too. But I think, again, it's just very small and simple things you can start to do, even if it is 15, 20 minutes of quiet time or reading a chapter in a book, create some ritual in that way. I think that that will just help ease some of the difficulty and hecticness to the day. I think it's just really important to think about what works for you and then stick to that ritual, so you can make sure you take care of yourself. I'm not the best at that. Here, I'm telling people to do that. It's been a while since I've done acupuncture, and I say to myself, I need to get back. When you can't do it, don't feel so guilty. I think that's also the piece of it, is don't feel guilty. That's a hard thing. 

JEN BAVRY: I think you made a couple really good points. One, don't feel guilty, but also start simple. Start with something that can only take five, 10 minutes. Even if it is just the breathing. Taking a walk outside, getting some fresh air, and then just realizing that you can build that in. If it's once a week, maybe then it becomes twice a week, but it's finding what works for you. 

MARIA: Absolutely. It doesn't have to be a lot. It doesn't have to be very long. Again, people may want to see you doing something different. I go back to it's hard. I want to spend more time with family or friends. Sometimes I just can't. That has to be okay, as well. That guilt piece is something that we have to, I think, again, as moms and especially as moms with children with autism, we have to just put to the side because we're taking care of something larger than ourselves, and that often folks don't understand. It's not about trying to explain to them what it is that our family needs. 

JEN BAVRY: Maria, I really appreciate your time today and everything that you have shared. I think it'll really help others to hear this. 

MARIA: No problem. Thank you for having me. Thank you. 

[MUSIC] 

JEN BAVRY: Thank you for listening to this episode of From My Perspective. If you would like to learn more about OCALI and its resources, please visit ocali.org.