Dana Marie (00:00.862)

Hi everybody and welcome back to the Empowered to Advocate podcast. We are here with season three, episode two. We hope that you enjoyed our first episode of the season last week and we are going to jump right in today with a really exciting, timely topic considering that it is back to school for many folks. We are going to talk about self-care. We are going to talk about self-care specifically for parents and caregivers of children with disabilities and children in special education and schools. We know that this can be a really challenging time. There are so many unknowns during back to school. Your child might have a new school team. They might have a new special educator, new specialists. They may even be attending a new program or a new school. September for a lot of folks can feel a little challenging, a little bit anxiety producing. So we are here to give you some hopefully good tips and strategies and tools today to take care of yourself while we know you are taking amazing care of your kiddo or kiddos. So with that, I am joined with Michelle and I'm going to throw it right to her.

Michelle she/her (01:06.018)

Hey everybody. So I think to touch on self-care, you might already have turned this on and you might be ready to turn it off because you might be like, who are you to tell me that I need to find time for self-care? Like I don't have enough time. And I think that that's often, I mean, it's very true. And those feelings are super valid. But before you turn us off, try to hear us out here because hopefully we're gonna have some maybe some mindset kind of shifts that we can think about for taking care of ourselves.

And I think that just like so many other things in pop culture and popular culture, the term self care has kind of taken on a mind of its own where we're seeing on Instagram and TikTok and Pinterest, you know, mommy self care, daddy self care, caregiver self care, right? And it's you see these influencers and people who are seemingly, because we do know logically that people are not always actually doing or experiencing, it's a highlight reel, right? Like they're showing the highlight of their experiences where they're at the spa for a girls weekend, they are getting a hot stone pedicure, they are able to send kiddos off with grandparents or auntie or whoever so that you can take a bubble bath, right? And that's not necessarily a reality for everybody. And we're going to get into the community aspect of self-care in a moment, but taking a breath to maybe change instead of thinking about self-care as this grandiose gesture, right? But thinking more of it as taking care of ourselves. And I know that the idea of putting on your oxygen mask, filling your cup first is also super cliched at this point. Like we hear this all the time, but it is absolutely true. If we are not taking care of ourselves, our mental health, our emotional health, our physical health, it makes it harder for us to care about the other folks that we're traditionally putting in front of us, right? And as caregivers,

We are giving care, and if we are caregivers of young folks with disabilities, there is even so much more time, effort, energy, scheduling meetings, scheduling medical appointments, any sort of after school activities. How many children are you caregiving for, right? Trying to juggle all that, I mean, it's exhausting just trying to manage a child's calendar, right?

Some ways that we can focus in on taking care of ourselves is by simply recognizing that it doesn't have to be a grand gesture. It can be something that is as simple as taking three deep breaths in through your nose, out through your mouth, maybe count counting in for in breath of four, exhaling for four, three times before you go into a stressful meeting or before you pick the kids up from school or to start your day.

You wake up in the morning and you just start with those three deep breaths to, you know, start your day centering yourself on yourself, right? It doesn't need to be this big thing where we're spending lots of money. And that's all nice. Like pedicures are lovely. Bubble baths are lovely. If you like bubble baths, right? Spa weekends, if you can do that, that's great. But it doesn't have to be that in order to care for yourself. So you can go for a walk, right? And it's really about trying to find time for yourself when you were able to find that time for yourself. So maybe that walk takes place while you're at work or takes place when you have a respite care worker coming to your house to watch the kids, right? So it's really gonna be super individualized, but it is important to find those moments to just find a little bit of peace and centering, a little bit of grounding when you can. And again, it doesn't have to be the 60 minute, 90 minute event to make it worthwhile. I think there's also this idea, we have this all or nothing mindset. As a fitness and nutrition coach, I also see this in that world too. It's like if I can't do a 60 minute workout, it's not worth it. If I can't eat five servings of vegetables a day, then it's not worth it to eat one, right?

This is all very polarized self-care as well, and fitness and nutrition loops into self-care because it all gets very polarized and the messaging gets very polarized and then we feel like, and it's very normal as a human being to feel like if I'm not doing all the things, then like why bother? Or it gets left out and these little moments, these little gestures of caring for ourselves can go a real long way.

Dana Marie (06:25.534)

I think one thing that you mentioned briefly, but it just made me think about too, is with social media, a blessing and a curse, I think sometimes what can happen is parents and caregivers see other parents and caregivers online, on Instagram, on Facebook, on TikTok, really everywhere, and compare themselves to them, right? And so, you know, there are some parents and caregivers who are online a lot or on Instagram a lot, on Facebook a lot. And like Michelle said earlier, this is a highlight reel, right? Everyone's posting the highlight reel of their life. Everyone is posting what they feel comfortable and what they want to post from their life and from their children's lives. But you can never really know. We all know that, that you can never really know what's going on for a parent, what's going on for a family, what's going on for a kiddo behind Instagram behind Facebook, but I think for parents and caregivers, one thing that can be challenging is you see a peer, somebody else you know who might have a child with a similar diagnosis or a similar disability, and you see that they're able to go to the park every day or go to the pool every day in the summer, or they're able to do things perhaps that you are not able to do or don't have time to do with your own kiddo. And that can, right away, that can start to feel challenging and hard to see other people doing things that maybe you're not able to do, like I said, don't have time to do. Which brings us into kind of the big thing that we wanted to talk about today, which is community. Online is an amazing place to find community if you are a parent or a caregiver of a child with disability. It is a way of caring for yourself, right? To find other people who have similar experiences or who also have the experiences with a kiddo with a disability in the special education system, so on and so forth. But there are other ways in addition to online spaces that you can start to sort of create and cultivate that community care of care around yourself as a form of taking care of yourself. You may be lucky, blessed to have folks around you, family, friends who are able to help you.

Dana Marie (08:40.378)

Maybe meal prep or babysit or do some shuffling back and forth between school and home or school and activities. That might be your experience for some people listening. That's not your experience. It's you or maybe just you and your partner or another, another one of the kiddos parents. Everyone's experience is different in that way. There are other places and areas that you can find this community of care that might be outside of your family and outside of your friend group.

One thing right off the bat that we recommend is each school district, if your child attends a public school, each school district has a CPAC, which is a parent organization specifically for parents of children in special education in that school district. Usually if you just go on the district's website and put in the search bar CPAC, it will come up with the information. It will let you know who the contact person is. It will let you know when they meet, whether they meet in person, whether they meet virtually.

It's a great place to start if you're looking for other parents or caregivers in your community that have similar experiences, might have a child that's your child's age or in a similar classroom or program or maybe they attend the same school. So that's a great place to start. Another thing that we often remind parents when we're working with them in a one-on-one capacity and not everyone knows is that when you attend an IEP meeting for your child, you actually have the right to bring somebody with you. You may be partnered in a partnership and maybe your partner is working or cannot come with you to the meeting and you're thinking, oh my goodness, this is so overwhelming, I'm going by myself, how am I going to get all the information, pay attention, so on and so forth. We recommend that you bring somebody. For folks that we work with, it might be an advocate or a parent coach that you bring with you.

For other folks, it might be a family member. Maybe you bring your sister or your parent or a cousin, or maybe you have somebody in your family who is a special educator or somebody who's familiar with your child. We always recommend that if you're feeling nervous and uncomfortable or just really overwhelmed attending an IEP meeting, especially if it's your first or one of your first that you bring someone with you. This person doesn't even have to say anything. They could come and help you just take notes. They could sit next to you, just be a support person next to you. And they can just take notes so that you can actually focus on the meeting and participate sort of in a more fully way. So there's kind of some creative ways to make sure that you have other adults sort of in your pocket, on your side, when you're doing sort of these stressful and overwhelming things when it comes to your child's special education programming.

Michelle she/her (11:32.606)

Now, I think that's a really good point about bringing somebody with you to a meeting when possible. When I am at many meetings, folks bring somebody with them and it could be a friend, it could be an advocate, it could be sometimes an outside service provider. If you have like a home-based ABA support or an outside speech or an OT therapist, they can be also very useful for coming in and just making note of what that specialist is speaking about to help you better understand it in case you missed something or you didn't understand something and didn't feel comfortable asking during the meeting. So yeah, bringing somebody with you to a meeting is a huge piece of community if it's possible to do that. I think, I was also thinking when you were talking about this, the idea of the SEPAC, and I feel like that's really underutilized. A lot of parents, when I speak to them, don't realize that that's something in existence. And some districts do a, I hate to say better job. I think some districts depending, so the SEPAC is made up of all caregivers. So depending on who is on the board, who is the president of the SEAPAC, the CEPAC, the assistant vice president, that's what I'm looking for.

I was thinking assistant principal, but no, vice president, secretary, whatever, whoever's on the board of the SEPAC. Depending on who's on the board of the CPAC, the relationship with the district and the like kind of the alliance when it's a, I've seen some really strong alliances between the CPAC and districts. And I've also seen ones where it's not as strong of an alliance or there may be the president had to step down and they're going through some changes. So things aren't

If you have a child in a district, your district should have a special education parent advisory council. So make sure you ask your team chairperson or your child's liaison, school administrator, how you can get information about that so that you're able to get your foot in the door and start going to those meetings. They oftentimes will hold like special events too. That will be good events where it's like more of even like just a parent networking event. Sometimes they're training events.

And you might want to go to some, you might want to go to none, depending on what is most relevant to you.

Dana Marie (13:59.774)

And that can feel like, I think for some, I think a barrier for some people is just the commitment too, right? So when we start talking about things like joining your local SEPAC or things like that, it can feel like, I don't have time for one more thing in my day, in my week, in my month. I can't commit to weekly or bi-weekly meetings. I can't commit to monthly meetings, which we totally understand. The nice thing about a SEPAC is that they're really outside of like Michelle said, that board.

There really aren't commitments. You can show up when you can show up. So if there are events, if there are workshops, if there are speaker series, you can show up when it works for you and works for your schedule. Which brings me sort of to the last one, which is there are lots, we're in Massachusetts, we are Boston-based. There are lots of organizations who host virtual and in-person events for parents and caregivers. Some of them are one-off events. Some of them are event series or their virtual online series where they bring parents and caregivers together to talk about the challenges of being a parent with a child with a disability, the wins of being a parent of a child with a disability. I'm thinking right off the top of my head a local organization, the Asperger's Network, I know they do tons of online virtual events.

Some that are super, super low stress in that they're really just community meetups. There are places to come and chat. They don't necessarily have a full agenda. We'll drop that one in the show links. We'll drop a couple others, sort of local to this area of organizations that offer these sort of parent caregiver virtual meetups, online meetups, as well as sometimes in-person as well. That's something that we share.

When we come across events like these, we share in our bi-weekly newsletter too. So if you're not on our bi-weekly newsletter, make sure that you jump on that because once we keep our eye on them and then when they pop up, we try to share them as quickly as possible with parents and caregivers so that you can find community. I think that's the big takeaway. There are so many things that you can do for yourself care. It's going to depend on what you have for time for space, for your schedule. It's gonna depend on what your interests are, what feels good to you, right? For some people, deep breathing exercises are going to feel good. For other people, like Michelle said, it's gonna be that 20 minute walk in the middle of the day that's going to reset you. For some folks, it's gonna be finding another parent where you can sit outside for 20 minutes and just vent about your day, talk about your day. It's going to look different for everybody. Figuring out what that is for you, obviously takes some time.

But we do encourage you, cliche as it is, to think about putting your oxygen mask on first, especially in September. The school year can feel long and it can be hard and it can feel challenging. And we want to make sure that the parents that we work with and that we are in connection and contact with are taking care of themselves as well.

Michelle she/her (17:19.97)

Yeah, and we actually have a caregiver retreat. We have an in-person event coming up on September 28th. It's going to be from 730 to 9 o'clock. Hopefully you can get some help with bedtime or whatever that routine is. Come and join us for some yoga, real gentle yoga. I'm going to facilitate that. So if you feel like you're not a yogi, this is all like you can come and do child's pose or

you know, a Savasana like the entire 30 minutes, if that's what feels good for you. It's real gentle to get us more into like more of a meditative place, followed by some reiki and a sound bath with the folks from Zen Den Magic. It's very exciting. We're going to be, yeah, we're going to do this at the Salty Buddha in Peabody, Massachusetts. So if you are local and you are interested, we would love to have you come join us. And we know that it can

Dana Marie (18:04.836)

excited.

Michelle she/her (18:18.978)

I know that I have anxiety when I go someplace new where I don't know anybody. So we are offering when you purchase your ticket, we will then send you a discount code to be able to bring a friend for just $10. So if you are interested and you know that you have a friend who would be interested, make sure you get that and then we'll send you that discount code. And if you are unable to make it and you know somebody who's local to the area, share this event with them. We really want to provide a space for you to have some stillness, have some calmness, get re-centered, just some time for you. And the bonus part of this event is at the end, there will be some light refreshments and time to connect with other caregivers. So we encourage you to stay for that if you're interested in staying for that as well. So we will drop the link. Yeah. I'm so excited.

Dana Marie (19:11.103)

So looking forward to it.

Michelle she/her (19:15.822)

It's going to be amazing. So hopefully you will join us for that September 28, 730 to 9 at the Salty Buddha in Peabody, Massachusetts. So make sure you grab your tickets for that. And if you're unable to make it to that, I hope that you are able to find some space into your day to find some time to breathe, find some time to go for a walk, move your body, drink some water, read a book.

Um, scroll through Instagram. I know some people are like, it's so toxic to just be scrolling all the time, but sometimes that five minutes of mindless scrolling, it like, it can be very calming. Right. Um, I mean, you don't necessarily want to be scrolling all day every day, but especially if you're looking for other places to connect with people. So yeah, super excited for our event. Um, hopefully these other tips were helpful for you.

Michelle she/her (20:13.31)

It's so individualized and so nuanced and what you can do. So I hope that a big takeaway for you is that it doesn't have to be this big grandiose gesture to be worthwhile and you do deserve it. So seek out that community, seek out that support and help each other, help each other, um, feel good and supported.

Dana Marie (20:36.774)

Thank you as always for joining us. We can't wait to see some of you on the 28th. And for everyone else, we will be back here next Friday with another episode. So we will talk to you soon. Bye everybody