How Disability Parents Can Get Organized Without Burning Out with Angela O’Brien

Ep 14 — If paperwork and clutter are exhausting you, you’re not alone. Professional organizer Angela O’Brien, mom to a young adult daughter with Down syndrome, talks with Amy Julia Becker about the unique organizing challenges of disability parenting. From managing medical appointments and IEP paperwork to creating a home that works for everyone, Angela shares simple, realistic steps to help you move toward greater peace and presence.

00:00 Organizing for Disability Caregivers
06:22 Challenges Faced by Disability Caregivers
10:39 Starting Small: Practical Steps to Organize Spaces
15:27 Managing Time Effectively
16:49 Organizing Paperwork
21:53 Organizing Tips

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Ask Me Anything: Record (or email) your question for our upcoming Ask Me Anything episode: amyjuliabecker.com/qr/

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MENTIONED IN THIS EPISODE:

• Your Space Reclaimed: https://yourspacereclaimed.net/
• Amy Julia on Angela’s Especially Organized: Sensible Solutions for Special Needs Moms podcast: 90 | Reimagining the Good Life with Kids with Disabilities

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WATCH this conversation on YouTube: Amy Julia Becker on YouTube

SUBSCRIBE to Amy Julia's Substack: amyjuliabecker.substack.com

JOIN the conversation on Instagram: @amyjuliabecker

LISTEN to more episodes: amyjuliabecker.com/shows/

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ABOUT OUR GUEST:

Angela O’Brien is a mom of 2, professional organizer, Enneagram coach, and host of the podcast Especially Organized: Sensible Solutions for Special Needs Moms. As the mom of an amazing young adult daughter with Down Syndrome, Angela is passionate about advocating for and supporting families like hers who are raising kids with disabilities.  In fact, after 18 years of sharing her daughter with the world, volunteering her time to support other families and raising money for local Down Syndrome support organizations, Angela took her almost-obsessive passion for home organizing and turned it into a business where she speaks to and coaches fellow caregivers through their clutter so that they can reclaim the space, freedom, and energy to do what they love. She lives in Dallas, TX with her husband and daughter and is constantly trying to find her way to a beach.

Links:

Website: https://yourspacereclaimed.net/

Instagram: @yourspacereclaimed

Facebook: Your Space Reclaimed

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Take the Next Step is produced in collaboration with Hope Heals. Hope Heals creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inclusive, intentional, inter-ability communities. Find out more about our resources, gatherings, and inter-ability communities at hopeheals.com. Follow on Instagram @hopeheals.

Transcript

Note: This transcript is autogenerated and does contain errors. Please check the corresponding audio before quoting in print.

Amy Julia Becker (00:06)
I'm Amy Julia Becker and this is Take the Next Step, a podcast for families experiencing disability. We've teamed up with our friends at Hope Heals to bring you weekly conversations with fellow parents, therapists, and disability advocates about practical ways to cultivate a thriving future for the whole family. Here at Take the Next Step, we see your family as a gift to our society and to your local community. Your family matters, your child matters.

We need you among us. If you are anything like me and most parents I know, you feel overwhelmed by clutter and paperwork at some point. And if you are a parent of a child with a disability, then you might feel that even more. And yet ironically, those of us who are parents of children with disabilities also might feel like we need to be even more organized than the average parent because we have to keep track of

more doctor's appointments and we have to keep track of IEPs and we need to know how to create a home environment that feels peaceful for kids who can become easily dysregulated. So what do we do in the midst of these demands? Today, I'm talking with Angela O'Brien. Angela is a professional organizer and a podcast host of ⁓ her own podcast, Especially Organized. She's also the mom of a young adult daughter with Down syndrome and she supports disability caregivers.

by helping them, which is to say us, create simple functional systems that bring more calm, clarity, and freedom to everyday life. Angela knows what it's like to be a parent just like us. She knows also how to help us take small steps away from the overwhelm and toward being organized enough for our families to thrive.

Well, hello, Angela. Thank you so much for being here with us today.

Angela O'Brien (02:03)
I'm so excited to be here, Amy Julia. Thank you so much for having me.

Amy Julia Becker (02:06)
Absolutely. I ⁓ really love the work that you do. You are the mother of a daughter with Down syndrome and also the founder of Your Space Reclaimed and the host of the Especially Organized podcast, which I've had a chance to be on with you and loved. ⁓ And what you really do is work with parents of kids with disabilities ⁓ in order to help them become more organized. So I'd love for you to just speak from your own experience, both as a mom, but also as someone who's been doing this work.

Why does that, what does it mean to be organized? I mean, that can be a kind of intimidating word. So what does that actually mean? And then also, why might it matter so much for those of us who are parents of children with disabilities to actually take some steps to being more organized?

Angela O'Brien (02:51)
Yeah, yeah. Yeah, this is something near and to my heart. So I mean, I will admit that I myself feel like I need to be organized in order to have some, I guess, control over my surroundings. So that is something that I enjoy doing. And I realize that not everybody, in fact, probably most people don't enjoy being organized or getting organized or the process. So I totally understand and can appreciate that.

But I have found for myself and for my clients the benefits of being organized. They don't just benefit us as disability caregivers, they benefit our kids as well. For me, having an entryway that doesn't have shoes all over it so that I don't trip or that my child doesn't trip,

or that she has a place to put her backpack every day, that actually is not only helping me because it's one less thing I have to do, she can actually do it herself because she knows where it goes and where it is every morning. And so it helps promote independence with our children. It helps ⁓ calm our days. It helps ⁓ give a sense of just peace and control. takes time out of our day. And so...

And I should probably clarify too what I mean by organizing and how I work with my clients. I really emphasize that being organized is not necessarily having the Pinterest perfect pantry. It's not necessarily having books that are arranged by color. Although those are awesome. Like we can do all that. That's great if that is what you want. But for most of us, being organized or having a sense of organization is...

where the things in your home are set up in a way that makes what you do and what you need to do and what you want to do easier. It doesn't create more stress. It removes stress from our lives. It helps ease those transitions. It helps our children do what they need to do. And also, when we are living in our homes, our

our homes aren't gonna be organized 100 % of the time. Every space isn't gonna be organized 100 % of the time. If we're living in our home, we're gonna be moving things around. And so just maybe having a sort of sense that, okay, there's gonna be certain times where it's not gonna be organized, but I can get it to a place where I feel good and I feel comfortable. So I really do believe that it can be very beneficial to us as disability caregivers, especially because

I looked this up. We as disability caregivers, spend an average of 32 hours a week on our caregiving tasks. That's already a lot of time and energy that we're spending on our kids. so taking time to get organized, yes, maybe it takes a little bit of upfront time, but we want to maximize ⁓ the other hours of the day that we have, right? So that those tasks, those hours that we are caregiving are a little bit easier and calmer. ⁓

And I do think that it's really, can be especially difficult for us as disability caregivers to kind of get away from the clutter because, and let me know if you have experienced this, Amy Julia, but I know in my experience and in those of my clients that I work with, I see kind of three universal experiences that we have and that contribute to our clutter. The first is really, ⁓

kind of a lack of support that we have, you know, maybe family that doesn't quite understand or is unable to help with caregiving tasks. We have ⁓ more therapy, we have more to do, and so we can't maybe reach out and be as social as other typical parents. And so all of that, you know, we have more time, like I said, 32 hours a week on caregiving, that's less time to do other things. And so...

A lot of that isolation, that stress, that overwhelm, that can lead to more clutter just in and of itself. Having decision fatigue over what to do. like we're just so tired doing all these other caregiving tasks, we just don't want to make the decisions on what to do with some items that we're not sure about. ⁓ Then we also have, I think, what I call kind of fear of the future, or it's even just an uncertainty of what's next with our kids.

I've experienced that with my 22-year-old just trying to figure out what's next for her, right? My typical son, you we knew he was going to go to school and then he was going to get a job and he's now living on his own. Well, that hasn't necessarily been an automatic for my daughter. And so we tend to, when we don't know what's ahead, we tend to kind of hang on to things, you know, we're uncertain. And so we hang on to more things because we might need it. have that kind of scarcity mentality.

that causes us to be kind of hanging on to our clutter and collecting our clutter. And then finally, and this has probably been the hardest one for me personally, is just an overwhelm with ⁓ the access to services that we get. So working to get guardianship, working to get SSI, ⁓ working with the education system, having an IEP, we have lots more points of contact with our schools. So that means more paper.

more things to remember, more forms to fill out, all of those things. And then the healthcare, you know, we all have more doctors to go to. So all of that is more paper and more things to hang on to. And so that just creates a lot more clutter for us. So all the more reason for us to consider that maybe we wanna work on our routines or habits so that we can get to a point where we feel a little bit calmer in our day and our things aren't owning us, we're owning them.

Amy Julia Becker (08:58)
Yeah, I mean, you asked whether I've kind of experienced those ⁓ scenarios and I have at different seasons in Penny's life and in our family life. And it's interesting because when I look back on it, I do think of some areas where I have made some real change as far as some systems in place. that like, I mean, just the simple thing, I have a folder on my desk that says PTB bank statements because she now gets Social Security and they go it goes into a bank.

And for so long, it was like, just had these statements and they were just in my office. all it took was one folder on my desk. And yet that also does bring like such a sense of peace. know exactly when I get once a month, there are papers that go in that file and that's it. ⁓ And I don't, I mean, this is why I'm having you on here is just to help us think through both in terms of the kind of physical spaces like the entryway.

as well as the paperwork. And I'll ask you more specifically about this, but I want to be talking about exactly what you're talking about, which is we're not going to get it all Pinterest perfect. And the purpose of doing it is actually has nothing to do with how it looks at a photograph. It has to do with how it functions for our family so that we are freed up to be flourishing human beings with one another. So I guess I love your vision and I love your expertise, both in terms of the organizational side and the I know what it's like to be the mom who's got

one more doctor's appointment or 17 more doctor's appointment than your neighbor does. And that's just how it goes. But that does require some particular care and attention. So if for all the people in this situation that we're describing, where do we start?

Angela O'Brien (10:39)
Yeah. So first of all, I think we need to start with giving ourselves some grace. First, we just need to start small. So that might mean thinking about ⁓ starting with five minutes a day of a very small space that you want to get organized. Maybe that's a drawer or a cabinet that has been giving you a little bit of stress. ⁓ Or maybe you start with ⁓

thinking of your day and how you move through your day, like getting the kids out to school. What part of that transition causes you stress? And it be a low level of stress, like I mentioned, ⁓ with shoes being in the way, maybe you don't even realize that you're kind of worried about falling or that your child might fall. Okay, so how can we make sure that the shoes are not in the way of our

coming in and out of ⁓ the house. So starting small and thinking about whether it's a time of the day or a ⁓ place that is really bothering you, starting small. ⁓ I also to recommend if you are in a situation where you are just overwhelmed with clutter and you don't know where to start, I call it trash bag therapy. Just literally get a trash bag and start easy, start with easy decisions.

So things that you know are trash, things that you know you no longer need or want. And so removing those and start with the trash, take it out all the way to the trash can, even if it's just five items, if you did five items a day or a week, that starts to add up. ⁓ so really just starting very small with easy decisions that you can move through fast.

Amy Julia Becker (12:21)
Nah.

Angela O'Brien (12:32)
Don't worry about the ones that are harder. You can get to those as you build your organizing muscle, right? Yeah. It could also be, you might also have a goal of like, okay, I really want to write more or read more, but I don't have a place to do that, right? Because I do believe that our homes can be set up in a way that promote the good habits that we want for our life. And so if you...

have a goal of wanting to read more or write more or just sit more, meditate for five minutes. Okay, can you clear out a corner of a room that you can set a chair and a candle and a book and a pen and have it ready so that when you do have five minutes to sit and relax, it's already there waiting for you. It's ready to go. So ⁓ that organizing can serve both purposes, right? It can clean and make way for the things we need

need to do and it also can encourage us to do the things that we want to do. So that's where I would start.

Amy Julia Becker (13:32)
I love that. And that's really helpful. I think in articulating, it might be a time of day and you can start small there and it might be a space and you can start small there like those. And even there, like only pick one. Right. So those are really helpful. Can you talk me through, you know, OK, a kitchen drawer where you're just finding that I'm always searching for something and I know it should be here. And like what would literally be the process of organizing that small space?

Angela O'Brien (14:02)
Sure, sure. So if you have something small like a kitchen drawer or a cabinet and you have, ⁓ let's say you have 15 minutes, all right? Ideally, you would take everything out and then start to put things back in a way that makes sense. But I would start with taking everything out or at least ⁓ grouping the items together, finding all of the can openers that you might have. If you have more than one, you may not need more than one. You can maybe donate that one, another one.

So finding and sorting out all of the items in your drawer so that you can see what you have, right? You might find things that you thought you were lost and you're like, my gosh, where has this been? You know, like you always, it's always nice to find things that you thought were missing. So first, you know, take everything out if you can, sort them into categories. ⁓ And then maybe even if it's a drawer, I do love to have some drawer dividers or organizers.

Those are really helpful. know that sometimes they can be really inexpensive and then you can go all out at the container store. So it just depends on your budget. But even if you don't do that, just downsizing, getting rid of the extra can openers and having four wooden spoons instead of 10. that figure out what you need and then put that back in the drawer and then donate the rest.

Amy Julia Becker (15:27)
That's helpful. I think also when you're talking about like spaces, the same can be true for time. I know for me, Saturdays are the day where I'm these days and this is now I don't have kids who I'm driving around to gazillion sporting events on a Saturday, but I used to and this would not have been the case. But now Saturdays are the day where I might have a little bit more time. And one of the things that really helps me is when I'm getting frustrated with like

Right now we're talking, it's the new year. I still have Christmas things that are kind of like scattered around my house. And what I've been doing is just putting them in one place that is not where they're going to stay forever. And it's like on Saturday, I mean, and this will take me all of 10 minutes. I could do it any day of the week. I'm not going to because it's like on Saturday I have a little extra time and that is when I'm going to like wrap up the Christmas.

⁓ you know, decorations that have kind of somehow made their way into every nook and cranny. But it helps me in a similar way to just be like, to sort my time and to give a designated amount of time that's not very much. And even if it's five days from now to say, this stuff is going to go where it belongs on that day. so I'm almost like it's almost as if I've done it already. Like I'm releasing myself from the frustration about the fact that I still have like ⁓ Christmas tree dish towels in my kitchen.

Angela O'Brien (16:48)
Absolutely, absolutely. And that reminds me of ⁓ a process that I know another organizer promotes. And then she calls it the Sunday basket, but it can apply to something like just what you've talked about. You can do it with mail or all the papers, all the forms that we get. If you set up a few, even just a basket, where you get your mail or where you might congregate or where you might want to drop the mail before you put it in the recycling or wherever.

But ⁓ having it in one place and then having a designated time of the week, or maybe it's a Tuesday night, you know, where you can sit down and go through it and fill out those forms or, you know, go through the mail and pay any bills that you have. But designating a certain time of the week to address that. And when you know that you're going to do it, it does, it releases that from your mind so that you don't have to worry about it all week long because you know you're going to get to it on.

whatever day you've chosen,

Amy Julia Becker (17:49)
You've kind of already talked about this, but just to hone in on paperwork, ⁓ as we have mentioned, if we've got kids with medical complexities, IEPs, therapy notes, evaluations, reports, it definitely feels like really hard to keep up with all that information. So ⁓ I am curious if you again have any advice on organizing the paperwork and again, if that's like where to start or how to keep going.

Angela O'Brien (18:13)
Yeah, that is ⁓ probably the most common question I get from clients. It's about the paper. The paper overwhelms us. And additionally, I think we're in this in-between time where we have the digital stuff that we get and the paper. Yeah, I found when I'm trying to get, I was applying for SSI for my daughter, the paperwork was just over the top. so,

⁓ So what and it took me a while to figure this out for myself and it varies by household, right? How how your brain works how your family works how you live through the day what items you get but ⁓ For me, I have found that binders ⁓ Labeled by you know government, know as like federal SSI ⁓ Or the state services that she has I have binders for those and I have a three-hole punch so that I can then put

those things into the binders with files. So that is one thing that has helped me. It might be hanging files for you set off to the side of your desk and you label one is government, one is eighth grade, one is ⁓ doctor's appointments by kid. So you have one for each child. ⁓ And then the other thing too that I recommend that might be helpful, and this kind of goes along with the Sunday basket is having

a, I actually have one right here. This is what I use. And I just found this on Amazon, but this is just a box. And I have hanging files in it. I have one that says act now because that's something that I need to do in the next week or so. I have one that says read.

because that's something that I want to read. know, those are things that I want to read. So categorizing, just having a few files here that are temporary. So as your files move in, as your papers move in, you know I need to either file that or I want to read it later or I need to do something about it. Then you know that it goes in there and then you address it, you know, every week or every other week. And so ⁓ having some sort of almost like a triage system for those papers.

before they go to their final resting place so that, know, because a lot of times we don't necessarily need to recall these maybe once or twice a year at most, you know, but we do need to have them on hand. We do need to hang on to a lot of these papers.

Amy Julia Becker (20:36)
I love what you're saying, which is basically have something that deals with the paperwork that is just kind of flowing. ⁓ Well, even before that, to have that basket or that inbox that is only being dealt with on a routine but not every single day basis. Then having a kind of, ⁓ we aren't dealing with it right at this moment, but it's going to get categorized a little bit. And then some permanent holding spots for things like the government, the school system, the medical.

That is all just so so helpful. So we're coming to an end of our time one of the things I really tried to do on this podcast is be brief in how we talk because of exactly what we're talking about knowing that Time is in short supply for so many of our disability parents and yet also that we do need these really Kind of what we call meaningful and manageable steps towards a good future Which is really what you're trying to make space for as well. So as we come to a close I am

I want to just name some of the things that you've already said and ⁓ give you a chance to offer if there's any additional kind of small steps people can take. I love that you started with give grace to yourself. And so that I just think is like a beautiful place to start. And then ⁓ then you said start small. That's idea of a small space or a small moment. ⁓ I loved trash bag therapy. Just even if you're not going to undo an entire drawer, you could say, OK, but what can go in the trash?

And kind of to the same point, what can be donated? Like what can just come out even if I'm not going to organize the whole thing, that still it seems clears up a fair amount of space. ⁓ Another thing I feel like you've been saying is align your organizing with your goals. Again, not rather than with the Pinterest Perfect, you know, ⁓ photograph or something. Like what actually matters to you the most and ⁓ start there. Group like with like, you know, put things together and also just what you just said about the paperwork, which is, you know, to have

the basket, the kind of inbox of things that are flowing through, and then the permanent repositories. I think all of those are so ⁓ actionable for so many of us. Is there anything that you would add to what I've just said from gleaning from the insight you've given us in the past 20 minutes?

Angela O'Brien (22:46)
that was a good summary. The only thing that I might add or compliment is that ⁓ taking time to consider how our brain, how your brain works, the listener. If you work better by organizing by something by color, that's great. If you work better by organizing by the time that it's used, ⁓ consider that. So organizing is not a one size fits all. So what might work for you?

for you might not work for me. And so taking that into consideration, just again, being practical about, who all is using the space? Is it me? Is it my spouse or partner? Is it all of my children? Is it just one? ⁓ And then how did they naturally move through the day? And so just trying to kind of match your organizing with how they move through the day can really make those.

organizing changes that you make last longer. know, like we're constantly having to kind of revamp, but ⁓ if we know where things go, we can ⁓ put them away and continue to put them away so we don't have to worry about knowing where that is anymore.

Amy Julia Becker (23:56)
Thank

you for that final word, because I think it is so important that, again, this is for you, not in order to follow some rules of organizing. is so that your family can, what we talk about here all the time, pay attention to delight and not deficit, connect to community, and take the next step, just a small step, towards a good future. So thank you for the ways you are helping us to think about that and put that into action here today.

Angela O'Brien (24:22)
⁓ thank you, Amy. Julie was so nice to be on. Thank you for talking.

Amy Julia Becker (24:30)
Thanks so much for joining me here at Take the Next Step. This show is produced in partnership with our friends at Hope Heals, a nonprofit that creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inter-ability communities.

I've mentioned this before, I'm going to say it again, we are gathering your questions for an upcoming Ask Me Anything episode and I would love to hear from you. You can click the link in the show notes to record a question or send it by email and I would really value your input here. We have more great conversations coming up in the next few weeks. Next week I'm going to be talking with Matt Mooney about what is disability.

Later in the month, I'm going to be talking about caregiving, about finding belonging within faith communities, about behavior as a means of communication and how we might understand that as parents and help others understand it. So please stick around and follow this show. That way it'll come to your, wherever you subscribe for podcasts on a weekly basis. And if you take the time, which I know is a big ask, but if you take the time to rate or review the shows, more people will know that it's out there.

That also happens if you share this with other people. So please do that and let people know that this is a place where parents of children with disabilities can gather and think through meaningful and manageable ways to take the next step towards a good future. As always, I would love to hear your questions or your suggestions. Again, in the show notes, there's a link that says send us a text. You can email me at amyjuliabeckerwriter at gmail.com.

Thank you for being here. Thanks also to Jake Hansen for editing this podcast, Amber Beery, my assistant for doing everything else to make sure it happens. And I hope that you leave today with encouragement to start with delight, connect a community, and take the next small step toward a good future for your family.