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

Amy Julia (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 Key to bring you weekly conversations with fellow parents, therapists, and disability advocates.

Amy Julia (00:11)
stability.

about practical ways to cultivate

Amy Julia (00:23)
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. If you hear nothing else, we want you to know that your family matters, your child matters. We need you among us. Today, we are trying our first question and response episode. Thank you so much to those of you who sent in questions. We have tried to group them together by theme.

And we’ll be talking today about three themes. One, how to handle emotional exhaustion. Two, how to make choices about connecting to community, when, where, how to do that. And then three, how to handle the overwhelm of just having too many things to do for our children with disabilities. I’m joined in this episode by my friend, Matt Mooney, and you will learn a little bit more about him and his family in this conversation, but…

Just to give you a little bit of his background, Matt and his wife Ginny learned that their son Elliot had trisomy 18 when Ginny was 30 weeks pregnant. Elliot was born eight weeks later and lived for 99 days. The Moody’s later founded 99 Balloons, a nonprofit supporting individuals globally and Matt is a writer, a speaker, a consultant on disability and inclusion.

Amy Julia (01:32)
with disabilities locally.

Amy Julia (01:40)
He’s also an attorney and recently received his PhD in Theological Ethics from Aberdeen University. you know, he’s also… Work has taken him around the globe and he also lives in Fayetteville with his family. As we move into this question and response episode, I just want to say if you are prompted to have more questions as a result, please do reach out.

Amy Julia (01:48)
really lazy. ⁓

and saw.

node.

Result of this.

Amy Julia (02:07)
I would love to hear from you and you can email me at amyjuliabeckerwriter at gmail.com. I would love to answer your question in a future episode or in my weekly newsletter. And now here is our first question and response episode for Take the Next Step.

Amy Julia (02:27)
I’m at I’m really that you are here today. I have given our listeners a sense of your official bio already, but I thought it also might be helpful to hear from you. Just a quick introduction to who you are and just how who you are pertains to this question and response podcast that we’re doing today.

Matt (02:48)
Well, I think most importantly for our conversation, I’m a father, you know, and a father of two children with disability, one who passed away, one who lives with profound autism under our roof named Lena. So when I talk about Lena, that’s her, she’s 18. I get to work with an organization called 99 Balloons, love it, and have gotten to study a little bit on this topic of disability and the church and so on and so forth. So those are the highlights.

Amy Julia (03:18)
So ⁓ listeners will already know that you’ve done a little more than a little bit of study, but I also appreciate the fact that you ⁓ lead with being a dad because that is actually what got you here with me is the fact that we are both parents of children with disabilities. And this is a podcast intended particularly for parents of children with disabilities. And, you know, throughout the season, we’re talking to therapists and we’re talking to advocates and experts and other parents. ⁓ And we’re talking about

kind of particular topics, starting with delight instead of deficit, connecting to community, taking the next step towards a good future for our families. But today I wanted to pause from those types of interviews and really give a chance for the two of us to answer some listener questions that have come in in response to some of those conversations. And what we did when we got these questions, some by email, others audio, was to try to look for themes and put them together in a way where we could address

even though we’re addressing someone’s particular question, having that question be somewhat representative of what other people have said is on their mind. ⁓ to start, exhaustion was actually a theme that came up and perhaps one that you and I can relate to. ⁓ People talked about the exhaustion of advocacy, the exhaustion of building community, the exhaustion of like actually just being really, really tired.

So I wanted to start with a question of how do parents of kids with disabilities take care of ourselves?

and what helps us avoid burnout and actually thrive as humans, as parents, as our own people. Any thoughts on that?

Matt (04:52)
Well, let me set myself up this way, which doesn’t answer the question, but I promise I will get there. I’m approaching, is there any more intimidating thing than taking the families, and I know a lot of beautiful, wonderful families, and taking their questions and acting like I have the answers. That is very intimidating. So I’m not coming into this like an expert. I’m coming into this like, ⁓ I think you’ll agree with this approach, a sojourner, ⁓ a Steves approach, right? Like I can’t be an expert on everywhere I’ve,

I necessarily, but I can tell you about a restaurant we went to. had a really good meal and I enjoyed it. So I can tell you what I lived. will. is Rick Steve’s is the best interpretation I can do, but on exhaustion, ⁓ it’s a real thing. It turns out I’m 48, ⁓ and the energy level is, I think not going up into the right. you know, I like the way that you phrased it. It’s, so many fronts. You are.

moving as a parent in this space on so many fronts simultaneously. is whack-a-mole might be a way to put it. are never feeling ahead is probably something to get comfortable with. With that said, think that the thing that I thought about is something that we decided, we have two other teenagers now, some of them now have

three teenagers, but we did this a long time ago. And the way we thought about our family ⁓ was like a dice. Plural would be die, but dice, a dice. And on that dice, like when you roll the dice, somebody is forward-facing, like their number’s up, right? And so I think…

Amy Julia (06:28)
Hmm.

Matt (06:44)
Our commitment or our way about thinking about our family is that everybody gets a turn for it to land on their number. And we have to have very, we have to have a lot of intentionality in our family because the default way that the die starts out at the day and ends at the day is that the person with the most need in our family, ⁓ we’re all in the boat, we’re all geared towards them.

We just, that’s nobody woke up and decided it. It, it is nobody’s sad or mad about it really. Some days they might be, but most days that’s just the way it is. And so we began, we really focused on how do we make sure that our other children’s number comes up and we’re intentionally focused on them. Maybe for 24 hours, it may be a taken them to dinner, taken them to breakfast. It may not be much.

But if we weren’t intentional, it would have never happened. And the level of intentionality to focus on the different members of your family, and with that said, like it is, my wife is Jenny, it is Jenny’s turn. That means kids, I’m gonna need your help. You’re gonna help me. That means Lena’s not gonna be as happy. Her day’s not going to go as smoothly and as perfect.

And that’s okay because it’s Jenny’s number that’s up. so I think that’s probably just a very 10,000 foot, not super helpful maybe, but it is a philosophy that I think in the long run makes you less ⁓ bitter. It allows you to, and it allows you to have a strategy whereby other people

become the focus and attention point, not just on their birthday.

Amy Julia (08:46)
Right. Well, no, I love that. I find that very helpful myself. And I think just to add on to what you’ve said, there is, I think, lot of can be a lot of guilt in our parenting when we are not fully meeting what the perceived needs of the children, especially, but any other member of our family. And yet recognizing that, you know, our needs as parents are actually a part of the family’s needs and our various children’s needs are all a part of that.

and not seeing it as this kind of zero sum game where everyone is supposed to have a full cup at all times, but actually that we, ⁓ all part of being human is actually experiencing the ⁓ disappointment of not having our needs fully met at all moments. ⁓ And I think for me, that’s looked a little bit like, ⁓ okay, if I can’t have like an hour of contemplation in the morning with my peaceful solitude.

maybe three minutes will actually still be a reset. You know, just trying to kind of ⁓ figure out if I can’t have a date night once a week with my husband, at the same time, what would it look like for us to be intentionally connecting within the limitations of our family so that we can continue to lead well here together? And so I think that’s actually part of what this podcast is meant to be ⁓ really empowering parents to do.

is to think in both meaningful and manageable ways about what would actually work for your family and who are some people who might help to answer those questions in terms of your personal circumstances. You’ve got a crying baby in the middle of the night. It’s a different circumstance than, you know, I’ve got a 19 year old who is pretty self-sufficient in a lot of ways right now. That’s very different in terms of meeting those needs. So anyway, I appreciate the dice. I will come back to that myself. I’m going to move on to a question from

Dan, he will explain who he is in just a minute because he’s going to ask his question for us.

Dan (10:44)
Hello, my name is Dan and I’m from Massachusetts. I work at a wonderful small organization that supports people with disabilities of all ages. When my own child was born with cancer and then had serious mental health issues, one of the biggest questions I struggled with was, is it okay to feel grief for my own expectations for what I thought my child and my life would be? I know many parents that I work with have felt the same way.

Thanks for all you are doing for our community.

Matt (11:14)
Well, this is a big one. And was it Dan? Dan. to get the name right. Dan, what a great, honest, beautiful question. first and foremost, I think we got to be willing to be honest. And I love honesty. Sometimes it’s raw. Sometimes it’s gritty. But I see this through 99 Balloons, we get to work with a lot of families. And I see this. I see people at all different stages of answering this question.

all the time and some are struggling with it, some are not struggling with it, but might should be. And I’ll just, there’s this tension in our families where they love the child that they have. And many of our families, they wouldn’t change things that you from the outside might think they would change. And they’ve arrived at that point and yet they,

they have a grief. And so there’s that tension and they feel a lot of guilt as you alluded to earlier. They feel a lot of guilt for that tension because they do love their child. And so I think part of the honesty in this equation is to understand what grief is and just level set on what grief is. And for Jenny and I, grief is any time that life, the realities of life, that there’s a gap between the realities of life

and what you expected. That can be very small things. That can be huge life-changing things. Divorce is something to agree, wasn’t, this isn’t, people don’t get married to get divorced. It’s a gap between what they thought. There’s all kinds of sizes and you can’t measure these things, but your dog dies. Well, I thought my dog was gonna be, I love my dog. For some people that’s.

Enormous for some people, move fast. You can’t measure these things, but grief is when there is a gap between reality. I certainly think, and my experience has been, I certainly think we do grieve as parents. First and foremost, yes. The answer is yes. And the hope on the other side of that is not just grief for grief’s sake, but ⁓ in interacting with so many families,

I get a beautiful picture that the families that I admire the most and want to be the most like, they have grief. They have come through grief. It was a part of the journey to accept and love the life that they now have. And they couldn’t get to that without going through the grief process. That’s what we want to do. What we want to do as parents is to arrive at that place, but not go through.

through the grief, but I don’t see that as an option. So yes, I believe that we as families, there is a time and there is a season for us to be honest and open that this is not what I expected. This is different than what I expected. And that that is a portal for you to begin to love the actual life that you have. Now, you and I have talked about this before.

I do not think that it’s society’s job or the church’s job or the community around you’s job to grieve your child because I don’t think they should have expectations of your child. You had expectations of your life and your child. And when somebody else meets your child from the community, I believe it’s their role to celebrate your child just as they are in the beautiful person that they are. So that’s different. There’s attention there as well, but that’s kind of how

Amy Julia (15:03)
with all of that, including that addendum. And I really agree. I don’t ⁓ know how I could have come to a place of not just acceptance, but as you said, celebration of Penny without admitting the grief. And for me, it felt like the grief of her diagnosis exposed some things in me that I had to grieve about myself, which included actually I had to grieve my expectations, not because they weren’t fulfilled, but because I had some expectations that I was like, shoot.

I expected my life to go a certain way that ⁓ really cut a whole swath of people out of my life. And now I want to welcome them, but I still have to grieve them. But then there was also some grief ⁓ that gets rolled in just that it has to do with some of the potential pain and suffering that Penny was going to face. And I think there was a real love that was really a part of that. I’ve again become much more trusting of.

our community and of the ways in which her life is unfolding. And so I don’t experience that same grief now, but ⁓ even distinguishing between different types of grief and again, allowing ourselves to go through that ⁓ without guilt and trusting that, like being honest and expressing our need really does lead us into that place of greater, not just acceptance, but celebration of what we’ve been given and who we’ve been given.

Matt (16:26)
Yeah, I think having lost a child and having adopted a child, it gives me a weird, but there are, are griefs that you never get over. Right. And there are griefs that are leading you to a different place and you will not always be there. Yeah. And you have to do, you have to distinguish between those. There’s, there’s some things that you may

never get through, quote unquote. It may be ⁓ you carry it with you and you build a life around it. So I’m always very quick to never tie a bow on it all and you’re gonna get through it and it’s all gonna be great. I don’t believe that and I don’t think that’s the way that life unfolds. So I do wanna be careful with that.

Amy Julia (17:15)
Yeah, thank you. All well here’s another question from Sarah. 

Sarah (17:20)
Hi, my name is Sarah and I live in Connecticut with my husband and two children, the eldest of whom is 12 years old and lives with a rare disease called Wiedemann-Steiner syndrome. My question, Amy Julia, is where are the spaces that my family should make a concerted effort for my daughter to show up now so she develops lifelong friendships and community relationships that will follow her into adulthood?

Matt (17:44)
Well, I think, to love that question, Sarah, to back away from that question, I think there’s a philosophical great ⁓ nugget in that question, which is ⁓ often parents are some of the slowest to believe and accept and really grab hold of this idea that our kids are a gift to the community around them.

And to me, that question had that embedded in it. Like you’re believing that. if you believe that, and that is your guiding light, to me that changes the way you think about your child’s future, their involvement in their church, their involvement in their community. So, you know, I don’t have the, you know, design your community this way and this is the best way to do it.

I’ve seen it done so many different ways. We get to work in churches in rural areas and small towns, ginormous, those places look very different. The communities in those spaces, the lives of people with disability, they look very different. I just, think for me, if I were to back up the, so Lena is now 18. We work with children through 99 Balloons and we work with adults. If I were to,

be thinking about what I would tell myself when Lena was five. ⁓ I just, I don’t know. ⁓ I think it’s that guiding light of if you believe your child is a gift. I think we had some questions on should the community that I’m in have people with disability in it? So I don’t think that that’s mandatory. ⁓

because I see disability as a part of the human experience. So if your community is working for you, think you should be, I think our friends with disabilities should be embedded into their community. And that requires advocacy and it requires work and it requires a lot of moxie as a family with a young child that may not quite fit into every little place that you go to. And if you can do that with love, all the better. And you need to do that with love, but,

because you are cultivating the community for the future, right? Like I can resort to anger very easy. I’m really good at it. I know you’re shocked. ⁓ Right, like I can be a lot, like especially when it comes to my kid and you don’t seem to like it. But like with teachers, with churches, to burn these bridges doesn’t really serve.

anybody well in what you want for your kids. I think just, I don’t think you have to go design a whole new community. I think you have to be an advocate within the community that you naturally fit into. You might go find some additional relationships. I think that’d be really fun. think that’d be, you’d feel less isolated and less lonely, but I think you are.

finding a community of people that are willing to listen and that are willing to accept your child. And if you have that, I think you have something to work with. There’ll be still a lot of education. There’ll be a lot of pain points. There’ll be a lot of tweaking and trying it and let’s do it again. That didn’t work. Let’s try it again. But to me, the heart of the community and the heart of the people you’re working with guides whether that’s gonna work or not.

Amy Julia (21:28)
Yeah, and I think just to, I mean, I agree with everything you just said and to take a little bit of a different tack because we just recently moved. And so I’m reading in Sarah’s question this like, how can I be sure that these are going to be lifelong community and friendships? And in our case, it’s like, we just moved. So we’re kind of starting over. Was it worth it to be, you know, connecting to people in our old community? And I still think what actually was happening there. Sure. First of all, there are some relationships that can travel with us, but others where, ⁓

We were learning how to be a part of a community and how to show up, how to trust a community. ⁓ And we were also learning how a community could welcome us and look for that. that was true, whether it was like going to the bookstore, you know, just like a very public and kind of who knows if you’re going to see anyone you know, type of space or into a much more.

you really should be known by name if you’re walking in again and again to a school or a church or some other like institutional place. ⁓ But I do think that kind of act of showing up and of ⁓ and then I guess the inverse is true, too, of like we create spaces in our own homes, at least potentially, that where we’re welcoming other people in and again, not apologizing for our ⁓ family member with a disability, but saying, hey, guess who you get to be with? ⁓

and really being intentional about that with ⁓ all sorts of people, whether it’s our peers as adults or our children’s peers.

Matt (23:01)
Yeah, that’s good insight. I’m sure you learn a lot from moving to a whole new whole new community and doing it all over again.

Amy Julia (23:08)
Yeah, at a totally different stage. there have been challenges and gifts, I suppose, that comes with that. So I am going to skip ahead a little bit just in terms of time here and ask a question ⁓ to finish what we’re talking about that is really about, ⁓ we’ve talked a little bit about connecting to community, we’ve talked about the emotional exhaustion piece of things.

I also wanna talk about these questions that have come up about the idea of like taking the next step, the name of this podcast. And here’s one that I think kind of summarizes what people were asking. There are so many therapies, appointments and skills that my son needs. No matter what I choose to focus on, I always feel guilty about all the things I’m not doing. How do I let go of guilt as I take the next step forward?

Matt (24:00)
Yeah, well, I don’t know that I can help you let go of guilt, but I hope I hope I can’t. mean, I oftentimes look at other families and I’m way better at giving other families the benefit of the doubt. My wife in particular is so loving and tender, compassionate, but then that, you know, that doesn’t always translate to when you look at yourself. And so,

I, I, Jenny and I often have conversations about like, what would you tell another family that brought you that problem? Like, would you be that harsh with them? Would you feel like they were doing that poor of a job? No, like never. It’s a hundred. work with dozens of dozens of dozens of family. We’re always like, my gosh, you’re doing, you’re killing it. You’re doing a great job. You don’t have it all figured out. Welcome to the club. Right. This is.

This is the community that you’re a part of. And yet on ourselves, we always feel that inadequate, just inadequacy, the guilt. I mean, I’ll just, I don’t know how helpful it is other than to say like, I feel that too. And we experience that feeling as well. I think the guiding light for like, how we make those decisions, because you

You can’t do all of the therapies that are recommended. You can’t physically do all the things that could ⁓ really be beneficial and be helpful. And so I think just knowing your own child and prioritizing what it is they need to work on in what order and thinking ahead, thinking of the community that they will. So for us, when we think of Lena, ⁓

you know, we want her to have relationships and we want her to be known. So our guiding light in making those decisions is, this help her have a routine, which is she very much needs, have a daily routine whereby she’s loved and known in community. Right. Like, you know, could, could she be doing X? She could, but, but for us that situates

And that’s, that’s particular to Lena. That’s cause we know Lena. so that’s going to change, but you, you, you know, your person best. And so to prioritize man in this next season, you know, this is what we’re working on. We could be doing a hundred other things. Maybe we’ll do five and, ⁓ we’re not gonna, we’re not gonna be able to do it all, but I mean, I do think the gift of people with disability is to let.

go of some of that optimization lifestyle Instagram feed that we all have, which is our friends with disability are constantly reminding us that we don’t have to be the best versions of ourselves. So that also has been a great gift to me.

Amy Julia (26:52)
Yes.

Yeah, I’ve stopped talking about anyone in my family’s potential and trying to kind of maximize it. I mean, because it’s true of not just Penny, but my typical kids as well, where I’m like, actually, I do want to pay attention to how you’re how you’ve been created, what the purpose is within your life. And I want to help you both to recognize limits and possibilities in who you are. So I do think some of this guilt aspect is like a ⁓ mindset shift.

But I also appreciate what you’re saying as far as like self compassion instead of just the compassion we would show to other families in the same first place. And then the other thing I thought about was just I did an interview with Jillian Benfield and she was essentially talking about how no helps us with yes. And what I mean by that is she was just like, yeah, like I wanted to be the Uber mom who was doing all the things for my kids with disabilities and all the things.

on the PTO because that was important for advocacy and all the things to self care. And she was like, I had to start saying no to some things in order to say yes to the most important things. ⁓ So again, if you’re in a position, as I sometimes find myself where I realize like I really could slow down and I need to, and it is kind of pull back, be ⁓ systematic almost about what are my priorities. ⁓ But sometimes that’s not the case. We’re doing the very best we can and we just need to be gentle with ourselves and trusting.

that like we’re going to, you know, if we are doing the best we can, loving our kids and being in community, it’s going to be okay.

Matt (28:40)
I have this thing where, you know, there’s high functioning alcoholics, know, that concept. So you look at them and they’re killing it from the outside, but you know, behind closed doors, they’re not doing so hot when they’re nursing dependency. I, and I often, I call us, you know,

the equivalent in this, I think there’s the equivalent of high functioning, high functioning disability dad, high functioning disability mom, where we’re, we’re trying to make our lives look like our peers. And we’re trying to when at work, when socially make sure that we make the cupcakes for the other kids thing, ⁓ and do 52,000, disability things that are on our schedule. And I just think.

⁓ the more you can accept that your life is not like your peers and the more that you can minimize comparison to other families, to whatever role it is that you’re in mom, dad, other families. ⁓ if we can minimize compare comparison, ⁓ if we can learn to say no, we can learn to accept that our lives have additional limits and the way that we love the people in our family.

is by not looking like our peers, our schedules not looking like our peers, our decisions always not mirroring our peers, because our lives don’t mirror our peers. There’s just a real freedom in that. ⁓ you know, it’s hard to maybe live that out, but it’s kind of freeing also.

Amy Julia (30:22)
I appreciate that so much. I’m really glad that ⁓ we landed on that place and ⁓ really grateful for just the various offerings you’ve had for us in this conversation. I hope that ⁓ for our listeners, it is helpful to just be able to ask some questions and really kind of puzzle through this together and give each other, I think, one of the things that comes within a disability community is the opportunity.

to give grace to one another and to ourselves and to recognize that, ⁓ yeah, there’s grief and there’s also a tremendous amount of love and beauty and freedom that surrounds it. And ⁓ I am grateful for the words you’ve brought today to help us explore all of that.

Matt (31:03)
What an honor. Thank you for doing what you do and being who you are. Well, how fun to walk through these questions.

Amy Julia (31:12)
Thanks so much for joining me here at Take the Next Step. It is produced in partnership with our friends at Hope Heals, a nonprofit that creates sacred spaces of belonging and belovedness for families affected to experience sustaining hope in the context of inter-ability communities.

Amy Julia (31:15)
the show.

by disabilities.

This

Amy Julia (31:33)
Episode may have prompted questions for you. And if that’s the case, please drop me a note at amyjuliabeckerwriter at gmail.com. I would love to answer that question to the best that I can in a future episode here or in my newsletter. I am really excited for our upcoming ⁓ interviews with Jordan Arragedi. ⁓ She’s the founder of a nonprofit called Support Now.

We’re going to be talking to Kerry Hahn, the author of Beyond Inclusion, and Sho Baraka, is a Christian artist and rapper and writer of Boys with Autism. As you conclude here today,

Amy Julia (32:07)
but also the dad.

It’s

always really helpful if you follow, rate, review the

Amy Julia (32:16)
this

show we want more people to know that it’s out there.

Amy Julia (32:19)
The best way to do that of course is just to share it with others.

Amy Julia (32:23)
As

you can send questions or suggestions my way. If you tap send us a text at the end of the show notes or just email me at amyjuliabeckerwriter at gmail.com. I want to thank Jake Hansen for editing this podcast and Amber Berry, my assistant, for doing everything else to make sure it happens. And I hope you leave this time with encouragement to start with delight, connect to community, and take the next small step toward a good future for you and your family.

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.