200th Episode Celebration: Your Questions Answered

Here we are, we've reached 200 episodes! What an exciting milestone! Let's celebrate by getting deep and taking questions from you, my beloved community and friends. The questions range from deeply personal to practical and logistical. Even my kids weigh in. Thank you to everyone who messaged or commented with your questions. Much, much appreciated!


Resources from this episode:
Becoming Brave Together - Anthology with contributing author Kara Ryska
Our YouTube channel now has video (but not this week)
Wild Edge of Sorrow by Francis Weller
Ashley Barlow  website |  podcast |  instagram
You Need a Budget Phone App

Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/

Coaching Opportunities
Pathway to Peace {Group Coaching Program}: Schedule a Consult or Contact Me

Transcript

You are listening to the special needs mom podcast. This is Kara, your host, and I am so glad you're here.  Before we get into this episode, I want you to know that pathway to peace, which is a group coaching program is currently available to join.  This program is built on three main pillars. First coaching.

It's the real powerhouse. It's what I do. It's what I love. Second.  Community.  And if you've been around for a little bit more than a minute, you know how I feel about community and the power that it has to heal and change your life. And lastly, I have a library of content filled with resources, with modules, with lessons.

We go way deeper than I can go in on the podcast and these are available to you in a way that you can consume them today. In your busy life,  this program would be a good fit for you. If you've stabilized past the point of initial diagnosis and find yourself spending a little bit more than you'd like to in overwhelm, and you can't imagine how given all the things in your life, you can have.

Any sort of peace ever again  through the program, you will gain the gift of acceptance. You will do the work to recover your spark. You'll leave the program with the tools and the confidence that you have what you need to have joy and peace part of your life once again.  So it's time to change it up. I know you've been saying yes to everybody, especially serving with all your heart and everything you have to your child.

Now, it's time to say yes to you.  Find the link in the show notes to get more information and for next steps. 

Hi, I'm Kara, life coach, wife and mom to four incredible and unique children. It wasn't all that long ago that my son received a diagnosis that had my world come crashing down. I lacked the ability to see past the circumstances, which felt impossible and the dreams I once had for my life and family felt destroyed. 

Fast forward past many years of surviving and not at all thriving and you'll see a mom who trusts that she can handle anything that comes her way and has access to the power and confidence that once felt so lacking.  I created the special needs mom podcast to create connection and community with moms who find themselves feeling trapped and with no one who really understands. 

My intention is to spark the flair of possibility in your own life and rekindle your ability to dream. This isn't a podcast about your special needs child. This is a podcast about you.  If you are a mom who feels anxious, alone, or stuck, then you are in the right place. Welcome.  Hello, and welcome to the Special Needs Mom podcast.

I'm very glad you're here. Today is a celebratory episode, marking our  200th episode. It's kind of a lot of episodes. Wow. Did we really do that? We did. We're going to do an ask me anything type show. I thought this was such a fun idea and I think my editor, Alex, for coming up with it. And thank you for those of you who took a minute to ask a question.

And I'm just now realizing that there's more questions that I missed on Instagram that I meant to go back to. So I will be recording this in two parts, and I'm going to add those in there before I finish this recording. So a couple announcements, some new things that I want to make sure you know about before we get into answering those questions.

First thing is I have a new feature that allows you to text the show, AKA me.  You're going to see a link on the show notes. It's going to say text the show. I mean, what that means is you can send a text message and I will get it in my podcast host platform. It won't go to my phone, but it will be. Like you messaging me, AKA the show, and I think that would be really fun.

Now, this is a note to you that I won't be able to like text you back. So if I don't text you back, it is not personal. If you do want to leave your name, that would be helpful because otherwise I will not know who it is because the feature does protect your privacy, which I think is good. So you can ask something anonymously.

That could be fun. All right. Next little announcement, kind of a big deal is the book Becoming Brave Together. Now I hope some of you saw this on Instagram and perhaps even the private podcast group that I have, but I had the huge honor of being a contributor to this book, Becoming Brave Together, which is an anthology that Jessica Patay put together as part of the We Are Brave Together community.

And this book is really amazing. I find myself referencing it in conversation all the time. And I mean, really, it's a book of validation of community and of hope. So I do suggest that you get yourself a copy and there will be a link on the show notes for you to do that. 

Also, summer, summer is coming. It's coming in hot. And we are going to be doing something a little bit different over the summer. Mostly designed so that me and the team that produces this podcast can get our feet underneath us a little bit.  And we have some creative solutions that will allow you to keep listening to episodes and us to get a little bit of a break.

So you can stay tuned for some special episodes during the summer. Hang in with me. We have more announcements. This one's very short and sweet. We're doing YouTube now. We're doing videos on YouTube. So if you like to watch things  versus listen to things, that's an option for you now.  The caveat is this particular episode will not be on video. Why? Because me and the team, we wanted to stay sane. And so this is a little bit more complicated. And so we're not doing this one on video, but the future they're going to be on YouTube, which hopefully will give other people access to it that don't regularly listen to podcasts.  This is an important one.

This is an invitation for you to refer a guest.  I hope you guys appreciate the people that I have on the podcast, and you probably don't know this if you haven't written a book or worked with a PR person, but I get a lot of emails several a day from PR people or new authors wanting to be on the podcast to promote their books.

And while I 100 percent honor their story and their work, and I'm sure it's amazing. I just don't necessarily want this to be a purely book promoting podcast. I think that would be like a different podcast. I want this to be a podcast that really serves you and to do that. What I would ask is that you suggest people that you want to hear from  and topics that you want to hear about.

So some of you might have, maybe one of your OTs is like life changing and you're like, Oh my gosh, she or he needs to be on the podcast. And then you can tell me their name and you can tell me, this is why this is the story. This is the angle. This is why I want them to serve our community via the podcast.

Okay. It's very important to me that I take good care of y'all. And part of that is bringing guests on that really meet you where you're at. And they get the concept of the show that it is not about supporting your child. It is about supporting you. All right, I think we're ready to start the questions and answers.

So let's hear the first question. 

Hey Cara, this is Alyssa. My question is, what is your advice for an experienced mama, but, um, a newer special needs mama of two years, who would like to become an advocate more full time? I carry the health insurance so I have to work at least a 5 FTE. 

My advice is slow and steady.

I don't know that this is going to be the most encouraging  And I guess I'm kind of like, Oh, I wish I could be like, do it. You got this. It's amazing.  But I also want to acknowledge that supporting ourselves is I think a kind of thing we could do to ourselves. Like making sure that we have health insurance and we have the things that we need.

And making decisions to have that for me. I like that choice for me. It puts me in a place that I can give and serve and know that I have my needs met. So slow and steady. As I think about my own business and launching, you know, moving from a completely different workspace to what I do now, there's business advice out there that I didn't follow, but it's something along the lines of, you know, choose to serve a group of people that have the money to purchase your services.

And it was something I thought about when I was kind of being called to, to serve and to coach this community. I was kind of putting myself in those shoes and being like, yeah, I don't know if they're going to be hiring coaches because like in a lot of cases. They're strapped. We're strapped. And so I didn't think it was a very smart decision to do that.

And I still did it.  So more about I'm going to share actually a little bit more about that in just a second, but I had to let it go. I had to let go of the perhaps not smart strategic business decision and really follow what was most important to me. I'll actually share a little bit about the evolution because I'll actually have been getting more people reaching out, wanting to become coaches or having some similar type business.

I obviously, I hear that you're not looking to be a coach necessarily, but you're really looking to be an advocate, as you said, to serve this community. And I, like a big fan, I think, yes, let's all get training and I mean, maybe not all. That'd be kind of weird, but I love when I hear people wanting to work in this space.

And I wish I honestly had, cause they asked me, do I train people? And the answer right now is no, but in the back of my head, the answer is someday I hope to. Um, that someday is probably quite a few years off, but I also said that about the podcast before I launched it. So you never know. Okay. So for me, I've been a coach almost eight years.

And for the first five years of my business and my practice, I worked part to full time in my previous career. My previous career for all of you dying to know was in the landscape industry. I was a, I wouldn't really call myself a designer, but I did have to do some design to make it all work. It's not my heart.

And I was a project manager and I did all the different things. I got to work with uber high end people and the people that had a lot of money to spend on really beautiful things. So it was actually a really fun job. Um, I was fortunate to be good at it. And so I was able to eventually work myself to kind of weaning off of that, uh, security of being a hundred percent employed to jumping to be a hundred percent self employed in June of 2021.

Now, if you've been around a while in the fall of 2021 was also. So time span here is just a few months later, after I  launched myself into be 100 percent self employed, my son had a scan that revealed that he had now recurrent brain tumors. So that took me on a little different turn than I had expected and anticipated.

Well, I mean, a lot different turn, it was like a full on U turn with like real screeching. But ultimately.  As hard as it was, it was also a huge blessing that I didn't at that time have a job to worry about keeping or doing well at during this time. Also, I think what I'll share is that, you know, of course you guys are aware of this podcast and you know, the, you know, I talk a lot about the group coaching.

That I do. And that is only part of my business. So I have what I say, two parts of my business where one is more that leadership, executive coaching, working inside of organizations. And then this other part is the podcast and group coaching that I do. And most. of my earnings come from the business side.

I wouldn't be able to sustain myself at this point with the group coaching. I'm not even sure actually, if it offsets the cost of producing the podcast. So when I ask for you to share the podcast, I would really appreciate you sharing the podcast. No, I mean, I say that like I have a chip on my shoulder. I do not.

I do this because I love it. And, you know, a lot of people go into podcasting because they want to make money. I also don't know if I'd recommend that. So back to my advice, it's slow and it's steady and it's following your calling and your heart to serve and really trusting that the rest falls into place.

So maybe it won't look like as fast as you hope it will be, but I do believe that it will work out. I believe that. You following your desire to serve people that there is a path to do that and to support your family. Let's do the next question. 

Hi, Kara, it's Ashley Barlow. First of all, thank you so much for all of the information and the guests and the connections that you bring on your podcast.

I just think it's amazing. My question is. What your favorite thing is about the sibling bonds that happen when your family includes a person with a disability. I would also love to know what your kids think about that. What is their favorite thing or what is something they have learned or experienced that has helped them grow as a result of having Levi as a sibling?

Thanks. Okay, Ashley, thank you so much for the appreciation. That is so nice. And I wanted to give a little shout out to Ashley, Ashley Barlow, because she's also a fellow podcaster and an amazing resource. Everybody should have a friend who is also an attorney advocate, because I sometimes might take advantage of that a little bit.

No, I don't think I take advantage of it. She's always so generous, but I did. Full disclosure, I did hire our own proper advocate because it would be too much to have her like  me Instagramming her for like the actual services that she provides her clients. But let's get back on topic. So favorite thing, the favorite thing that I experienced as the sibling bond, and just kind of what happens when you have somebody who's disabled, a part of your family.

Is I think the human compassion that I see that is developed in the hardship and I love that my love that my children are outraged as they tell stories of their high school and middle school peers using disability terms as like derogatory insults and then just like being really upset about it. I love that I get to see their hearts in a way that I don't think I would if they didn't have to deal with what I, what they deal with. 

Transparently, this part also breaks my heart too. So there's both sides of it. Yeah, I think it's, it's complex because I think there's this part of me that's beaming with pride, but it's also like beaming with heartache. Another thing that I love, uh, with the sibling relationship, and this is mostly from my oldest, is seeing, because they're in high school together, um, and they go to church youth group together, and I see him really advocating for him and coaching him and like trying to suggest things that will work for him and looking out for him. 

And it, again, makes me so proud of him and who he is,  but it kind of makes me worry. Of like the pressure that he, he puts on his self. I mean, cause we, we certainly try not to put those, those pressures on him, but it's a lot to hold for a kid who's developing and it's beautiful and  it's hard.  You asked what's your kid's favorite thing?

And I did get two out of the three siblings to come on here. The third, he has an answer, but he wasn't in a place where he felt like he wanted to come on. And I really, I respect where he.  And I actually think I kind of brought a lot up for him answering the question because you guys might relate to this.

It's actually really easy to come up with all the hard ways it is to have a sibling like some of you might have in your families or your children would have. And so it's a little confronting when it's like you're trying to find the good things and there are certainly are good things. Clearly we're talking about those, but.

If you're finding yourself having a hard time seeing through all the hard things to get to the good, just know that you're not alone. What is a good thing or your favorite thing about having Levi in our family?  

Hey, this is Will. I'm Levi's younger brother. I'm 12 and he's my roommate.  He's brought in some cool people and a lot of cool experiences, and for the most part, he's a really nice person to be with.

It's made me more patient in some ways, and I understand people who are disabled, very strongly. It gives me empathy for people who are disabled, and I understand why they do things that they do.  

Will is my  12 year old  going on. I don't know what age we're going to give him, but he is just wise beyond his years.

And he's always been like that. He's very well spoken articulate. He's amazing.  Thank you for participating. Well, okay, now we have Cambria and hers is going to be short because as I mentioned earlier, she was a lot more able to talk about some of the hard things than the good things. And I, and right now I'm just going to honor the question that we're going to look at the positive side and we're going to. Just let the other stuff be unspoken for now.  

All right. We have Levi's sister here. She is almost seven. And so Cambria, what is a good thing that you see or your favorite thing about having Levi in our family or as part of our family?  

He's kind and he's helpful and he does lots of good things and I really like it. 

Okay. That is my sweet Cambria.  Not quiet  or soft spoken. I'm laughing because like my sister in law told me, she's like, Oh my gosh, I think Cambria is the loudest child I've ever met. And I looked at her and like, you guys might think, wow, that's like a very offensive thing to say. I looked at her and I was like, you know, that really puts word to the experience.

Like, I think you might be right.  Okay, I'm going to read the answer that my oldest son Kate is 16 going on 17 here in the summer. So he and Levi are only like two years apart, 21 months apart, and they're just one grade year apart. Okay. The sophomore Levi is a freshman in high school. So to the question I asked him, what's something you've learned about yourself as a result of having Levi in your family?

And his answer was that he's a better person because he's not ignorant in the ways that he could be. Especially since there's a lot of ignorant people in regards to people with disabilities. He also said resilient. He said, there's a lot of extra responsibilities that I have to go through, but I expect myself to show up and to be a functional person to help the family. 

Oh, and like I said earlier, I'm like, oh my gosh, There's both the pride of who he is, and there's the concern of like, Oh, I don't want him to hold so much. So this is another area that we moms have to grieve. And we'll get to that in this conversation too, or in this, this episode. Okay. And back to what Kate said, he said, I want Levi to be able to have the best life that he can.

And it means I try to push him to go outside of his comfort zone. And I don't give up on him even when he's not super receptive or flexible. And this is, I think, something I get to witness that like time and time again, like it is the resilient piece I think is absolutely accurate that I see Kade not giving up on Levi when it would be quite easy to.

So my mom heart is just so happy that I have these humans that I just are so amazing in my family. 

All right. Our next question is from Alex and her question is, what is my favorite thing about being a mom? Now I'm a little embarrassed to say that this question was really hard for me to answer, but I think more so because I'm somewhat indecisive about favorites because I have a hard time like saying, Oh yeah, you're like my best friend because I don't want to leave out other people.

Being an includer is like part of who I am. What comes to my mind is getting to witness my kids becoming who they are. Additionally, I think I like the influence I have about how they think about themselves and how they treat others and how I teach them to treat others. I think just the word, as I thought about this question that comes to my mind is delight. Like I just delight in who they are. And for me, that's It's the best part about being their mom.  

Okay. Our next question is from Kelly. 

Hey, Kara. My question for the show is how to walk alongside siblings who are grieving the loss of a quote unquote typical sibling and just to walk alongside their grief, especially those of us with severe and profound mental illness and kids with disabilities. I'm finding it harder and harder on the siblings to just process and deal with their feelings. And anyway, would love any insight or professionals who might have any recommendations. Thank you.  

So the answer to this question for me, came very easily. As I was listening to it, actually the first time I was, I said it out loud, I'm like, get good yourself.

So the short answer to this question of how do we walk alongside the siblings in grief and it's doing it yourself and you might be like, well, I already am, which I'm sure you are. But as I kind of, you know, I'll explain a little, I'll give a little longer answer is that. Well, first I want to actually acknowledge Kelly for giving words to the experience that your children are having, your siblings,  giving it a word of grief.

I think as I've studied grief this past year, more intensely, what I noticed is that in that space, 99 percent of the grief conversations are focused around people who have died or the loss of somebody. And so it's a kind of an underrepresented area of grief, not having, you know, lost somebody to death, but the experience of not having something that you thought you would and that you might still long for.

So I can't speak to all of you, but I know for myself, I'm still very much learning how to grieve. I don't think grief is something that we necessarily master.  But I also think that with practice, it's possible to grieve well, or to be an experienced griever. A lot of my clients hear me say that the saying to answer any how question the answer is practice.

So I think even just bringing intention to this area. Maybe attention.  I think it's the word bringing attention to like, Oh, this is grief. And I need to maybe lean into this a little bit more. So in order to help our children, we have to help ourselves first. And I think this means leaning more deeply.

Into aspects of grief as you evolve and as you experience them, I know for myself, the stage that I am in parenting, my children is a time of a lot of grieving. A lot of us know, as we hit different milestones, whether it's in, you know, in different areas that it can really highlight aspects of something that we want  and don't have or can't have, or just the experience of watching our children.

Go through really hard things. The last thing I'm going to say about this aspect is community. There's a fantastic book called The Wild Edge of Sorrow. It's by Francis Weller and he talks a lot about and this is where I learned that grief is not intended to be a solo activity grief is intended. We are designed to grieve in community. Community is when we actually can most effectively grieve, and as I was kind of thinking through this answer. I thought, wow, how cool is it that you're asking this question?

Because I think if we think about those of us with more than one children, and actually, even, you know, even if it's just you, you, your child and your husband, that's a community, it's a family community, and that actually grief, conversations, and maybe even rituals. I know that sounds so serious, but read the book, you'll understand.

I think can be incorporated into our families and having our families be somewhere that we hold space for grief and acknowledge that grief is our lifelong partner here to stay  as we parent.  I laugh because it's like, I really wish it wasn't that way. And it is so. This is how we're going to do it. 

Okay. On to Katie. 

Hi, this might be kind of a personal question.  Would love to know your insight and advice on how you guys have handled the financial stress of  being in special needs. I feel so crippled all the time by just always knowing there's another bill,  a therapy bill or a medical bill or a hospital stay.

And just knowing  that those are always coming, I just feel crippled. I feel like I can't ever enjoy spending money. I can't ever go do something fun, and I, I can't ever spend any money on myself, and even though I know there's money there, it just, it feels like it always has to be saved for, for the future.

For medical and I would love any advice on how you might have handled that stress or that anxiety around that I just love any insight that you had. 

This is such a good question. I love that you asked a question like I'm not sure if this is too personal. Bring it on. Thank you for asking the question. So this is actually a topic that's been on my mind a lot I actually had intended on doing some episodes on Um, looking at some aspects of this and I will, my editorial calendar got a little disrupted as I'm producing this podcast, I'm also dealing with hospitalizations and you know, all these kinds of things.

So I do sometimes have to make some pivots. So let's say fall, let's say fall is going to be when I start to bring some of these topics more time and space. But for now. What I want to say about this is that your question was so well articulated in the way that I think a lot of us experience financial stuff, I don't want to use the word hardship because it's not actually always a hardship of money.

It's, it's that we are experiencing our relationship with money. So there's a very interesting concept about money or saying about money that like there's the math of money, like actually how much you have or don't have in the bank. And then there's everything else. which really is a way of saying most of our experience with money is all this  thoughts and beliefs we have about it.

The math part is actually very, very small part of how we experience our financial worlds. So I talk a lot about our relationships to things. And we have a relationship with money when my favorite descriptions of a relationship is a collection of thoughts we have about something. So if I were to ask you to download and to tell me all the things you think about money, we would find a long list and we'd be like, Whoa.

It was a little bit complicated and most of us, I'm certainly not all, but many of us have a relationship with money that would fall under this area of like, there is not enough. Like there's a belief that there is not enough or some variation of that. There's little differences and nuances for everybody.

And so regardless of how much money is in the bank, this is the math always feel like there isn't enough. Yeah. And so it suggests that there's so much opportunity to really understand your relationship and to work on your relationship just like you would in a, you know, relationship with a human being.

There's opportunities to, to really look and examine how that relationship feels for us and how we want it to be. So this is an area of the financial or relationship to money is an area that I think that you can approach it from so many different directions. And the first one I like I mentioned is like this relationship, the awareness that we can create about the relationship, which gives us options.

And a lot of us will find that we have like deep seated beliefs that probably were formed in our childhood about money. And there's many different options to start to untangle and unravel those from a totally different angle. I love budgeting. Most people don't say that. And I guess I feel proud that I like love budgeting.

I used to really hate it. I have a tool that I'll share with y'all. It's called You Need A Budget. It's a phone app, web app. I think it's like a hundred dollars a year. I don't know exactly how much it is, which I should because it's in my budget.  I really should. It's about a hundred dollars a year. But basically this tool is designed to be able to assign the money that you have to how you want to spend it.

So it allows you to be very intentional with your money, but it also has this ability to be flexible because we all know that we don't know what's around the corner. And so I feel like it's a tool that's been really, really effective for me when I can look at an app and my bank account, and to look at me in this moment and say, this is actually okay.

I have what I need in this moment. That actually is hugely helpful for me to experience the peace of having what I need. If I allow my brain to continue going on the cycle of like, you're definitely not okay. You don't have enough. You have to prepare for the worst thing ever. You can imagine that that would be not a very enjoyable place to be all the time, which Katie, I'm guessing that you already know that.

And just the last thing on the budget, I think it's like, again, it's a tool to allow you to support some of the relationship work that you can do around money, but also it helps you manage money to kind of make decisions that align with the values that you have and where you want to spend money. So it's been hugely helpful.

I think we've done it for like the last five years. Maybe I can't remember exactly, but before that it was kind of a cluster to be totally honest. I was always like, I don't know even how much money we need to survive. And that didn't work very well for me.  You can tell, I mean, as I'm sharing, I've done a lot of work in this area.

And I think it's important to me to transparently share like I still have a lot of fears when it comes to having enough money and having what I need to feel safe. Like I still actively do a lot of work. I very deep seated beliefs about not having what I need. And so this is a place where I think, you know, it's not like we I have arrived at the place that you should all be to that.

No, this is a place where I actively do the work, but There is also a lot of peace that I've been able to find, and I'm so glad that I did. And I think a fun fact to share, as I've, you know,  told you, I've done a lot of work in this area. I've had a lot of struggles in this area and 2012, so Levi was diagnosed with his first brain tumor in August, 2011.

All right. So we have 2012. We had clearly a lot of medical expenses. And the birth of my third child that year, and I was laid off from my job. So it didn't stack up very well. And recently my husband was cleaning out a file and he found our tax return for 2012. And I can't even believe how much it was.

Our taxable income was $2,905. Now, if you're wondering how a family of five. Survives in Southern California on $2,905.  The answer is, I don't know how we survived that. I don't know. Actually, I do know we had had a nice savings account at one point in our life. And yay that we had that when we needed it.

And notice I speak in past tense of that really nice savings account. But the reason I share that part is I've been in long seasons.  Where I went to bed and I felt so hopeless and desperate and scared. So wherever you are in this journey, I feel like I can say, and feel like I, I really believe that it has a good chance of getting better.

Like I don't think it'll be there forever. So even if you were like myself and made less than 3, 000 in one year with three children with a mortgage, that was about that much.  It can get better. And I just think really recognizing that, like, there are peaks and valleys and you just might be in a valley, I think it's so good to give yourself that hope of it can get better. 

More to come on that Katie. 

Courtney. Hi, Kara. This is Courtney.  And my question is,  how do you create fun pockets for you as a mom that are your own? Fun things for you. Fun things for you and Levi that what's your fun thing that you and Levi do?  And then what is another fun thing outside of extracurricular activities or kids activities that you do is that's fun with your family? 

Okay. I love that you asked about fun as it sounds like something fun is going on in your house over there.  fun pockets. So the challenge is real, I have to say. So we have a 10 year age gap between our youngest and oldest. So we have 16 year olds, 15 year old, 12 year old, and a six year old. So there's that 10 year gap.

And then of course, we have the widespan and abilities for our group. So we really are like, Oh my gosh, like how this is tricky. So as a family, to some degree, parts of traveling can be enjoyable for us all, but  There are often still struggles with that, but I will say that we do find places that we can enjoy and have fun pockets.

But the one thing that we found locally that's kind of something that we can access pretty easily is a place called AR Workshops, which is a maker space. So like, I think a lot of these are in a lot of the towns. All over the country where, you know, they provide, they do all the dirty work, they have like fun projects.

So you make woodworking projects. So they have like all different kind of crafting things, and they guide you through the whole thing. And so the idea is that you get to create something as a family. So we as a family have made like our clock. There's different holiday, like porch decorations that we've done.

Levi just had a birthday party there where he made this really cool, I guess, as a wall hanging of the United States, there's just really fun things to choose from. So I love that our whole family enjoys it. and can participate in different aspects of it. And I like that Levi really shines in this space because that's often not the case that he's not as into something.

And so I feel like everyone's happy when we're there. And I'm very thankful for that. Back to kind of, you know, what you said about like, how do I find pockets? And I think the key word here is pockets. I think it's having little points in time that I know is just for me to go have fun. Like, so for me, most Fridays I get to play tennis for like an hour, an hour and a half.

And so this is a little pocket that I've committed to every week. I get to go and smack a ball around, try to get it to go where I want it to go to be outside, to be with people that are regular people that are, you know, becoming more friends. So that's like one thing that I find for myself. And I think the key again, here is pockets.

And then you asked about things for me and Levi. And that's where I feel like, Ooh, I'm kind of coming up dry. I don't know that we actually have these pockets developed. One of the area he struggles in is like having interests, or maybe it's better said having interests that he can like access and do.

And so with that, he does like crafting. And so the challenge here is that Like, I have three other children and so focusing on a craft together with him at the same time I am parenting my other kids can be a little tricky.  I'm still figuring that out. So  if y'all have any insight on how to have fun pockets in that, let's talk about it. Cause you know, I'm not giving up. We just don't have it yet.  

Okay. Thanks for this question, Amanda. 

If you could go back to when your son was first diagnosed, what is one thing that That you are really proud of yourself for doing or handling. And what is one thing you wish you could have given to yourself for advice then? 

My honest answer to this question is surviving. And I was tempted to minimize that when I was thinking about it, like, Oh, it's like low bar to say that, like, but actually that's not, it was a really hard time. And I wasn't the person I am now. I didn't have any of the skills or resources that I have now. I knew nobody in this space. 

And you know, so 13 years later, I, I want to say I'm a very different person. And I mean, I think I shared it earlier in this episode, but like when Levi was first diagnosed, I think I did it, I can't remember if I said it. I was 10 weeks pregnant with my third child, and then once we got out of the hospital, I think, like I said, that was laid off from my job.

So then, you know, come in the financial hardship. And at the time my husband had like, so a month before Levi's diagnosis, my husband had quit his job to open a business.  That wasn't good timing. So surviving and that wasn't nothing. And I'm really proud. That I did that and I'm proud that I went on step by step, very slow.

This happened over many, many, many years. I rebuilt my life. I got the resources, I got the skills. And so I think long term, what I can say is I'm proud of who I've become and that's not nothing either. And then yes, about what advice I would give myself, I think the answer to this is you're going to be okay.

You'll find community. I don't even think I would have known I needed community, but you'll find community. You'll find your footing. You're going to be okay. It's not always going to be this hard. You're going to be even better than okay. Like you're going to have a really good life.  So I think that's what I would give myself.

All right. And the last few questions were more about the podcast. And so I grouped them here and these were submitted on Instagram, so I don't have audio for them. So I'm going to read the question. 

This is from Katie. She said, how do you come up with your content? Do you plan ahead or just record when you feel inspired?

And the answer is a little bit of both. I aim and I have it on my wall over here. Four months at a time is what I plan. I kind of envision I. Just listen to this community to decide who I'll bring on and what we'll talk about. I kind of like trying to look, look at themes and seasons and that kind of thing,  but I don't always follow that.

So I do that, but then I really never follow my plan to a tee. Because sometimes it just doesn't feel quite right. I really listened to my gut. And sometimes I have to rearrange content because I'm like in something. And if I'm personally going through something. That is, you know, I'm still kind of going through it.

It's not necessarily ready to bring to the podcast in all cases, right? And so I make it work for all of us. And sometimes I move things around for that reason. This is from Meredith. Her question is. How has starting a podcast served you as a special needs mom? In other words, what has been your favorite personal takeaway? 

Oh my gosh, I feel like I am the luckiest person because I get to benefit the most from this podcast. And, you know, the solo episodes, when I create them, it really forces me to dive deeper into thought and to reflection. And I might do some of it on my own, but I feel like it kind of is a great accountability tool to really have me stay active in continuing to do the work that I started many years ago.

And for me, I love that. I love the constant study. I think it kind of drives me to pursue  deeper understanding and deeper levels of support for me personally.  And then for guest episodes, I feel like I get to leave these conversations feeling so connected to the people that I get to talk to. And then I feel like I have this like really wide network of people all over the country and actually even world that are part now of my circle.

Do I get to talk to them every day? No, not so much, but I feel deeply connected. And I mean,  That's awesome. It's like my favorite feeling ever. So the total win for me. And I think it went for y'all too. 

Last question. Okay. So this question is from my friend Effie, who's a fellow podcaster. Her question is when you have all these conversations all the time, do you feel burnt out or compassion fatigue if you're asked to extend more into the support group world or like even your coaching business?

And the answer to this question is no, I don't. Well, it's Listen to both sides of it. No, in the coaching space and in the podcasting space, I do not feel compassion fatigue,  but I do feel compassion fatigue when I'm on Instagram  or Facebook. I kind of, you know, that uses terms interchangeably. I can only personally take so many stories of pediatric cancer or other diagnosis hardship.

I mean, a lot of different communities and I can only personally really take in the emotional impact of so many. And especially since I'm holding a lot already as a patient. You know, I am just for my family. So for this reason, I limit my time there and I don't ask myself to care for everybody.  I really give myself permission to care for my immediate community.

So these are the people that are in my coaching community. These are the people which is different in the podcast, right? Cause I can care for a large community. And I don't have to, I don't hold them in the same space that I would if I'm just seeing somebody on Instagram.  So it's weird because like the podcast has made my village very big.

And like one thing I have to say that I really don't like is that I can't remember all the details that y'all share with me about your stories. And I really don't like it. And I've had to let it go. I recognize like, I can't expect myself to remember everything. But my fear is that I will leave somebody feeling like they weren't seen or they weren't important because I can't remember everything.

And, oh, I just have to let it go. Like I said, it's just really important to me that people are left feeling cared for. But I also have to care for myself and acknowledge I'm just one human being, and my mind can barely hold all the medications that my son takes without looking at a list. So  we got to be human. 

And then I want to answer specifically about the coaching work and holding space for that community and why I don't feel compassion fatigue in those areas. Because clearly Um, my clients are going through really hard things. I've had two clients in the past year lose their children.  So I think this is why I think it is right.

The reason I, I don't find that I  become like overly weighed down or like in this, the term compassion fatigue is because I don't relate to them as needing to be fixed or that I can take away their problems or pain. My job. is to help hold space for that.  So really just being a witness is all I have to do, but I relate to them as whole, complete and capable.

And I think if I related to them as somebody that I needed to rescue, then I would go under real deep, real fast. It would just be too heavy to be able to hold that for the community that I do. I actually end up leaving Coaching conversations, coaching calls when we meet as a community feeling so filled up because I get to witness and be in awe of these women as they're growing and as they're celebrating, like one of my clients is experiencing some emotions that she hasn't felt in a really long time.

And they're not what we would call our pleasant emotions. We're like, Oh my gosh, like you're doing it not in like a belittling way, but like we're celebrating. Oh my gosh, this part of you was turned off and now you have it back. And so to me, there's so much just on, I guess the word is inspiration is I get to witness firsthand these people doing pretty profound work.

One place I, what I will mention in this question, kind of in response to this question is that personally where I am recognizing that I want to grow and need to grow is finding places for me to be held as I hold others. So right, like I love what I do. And I, you know, kind of picturing myself like I get to wrap my arms around and hold this community and I love it.

Like I said, and I need to create more opportunities for myself to be held in that same way. So that's what I'm working on in my personal life. I think that's a wrap for this episode and I hope you had as much fun as I did. So now would be a great time to go leave a review, you know, tell future friends,  people on the internet that this is a podcast that is worth listening to.

You may not all know this, but the reason reviews and ratings are important on like Apple podcast or Spotify is because when you go leave those, it tells those two platforms like, Oh, okay, we should suggest this to other people because this one person liked it, or these three people liked it. And so it helps other people find the podcast.

And, you know, I think that would be a kind thing to do for them.  So happy 200th episode to y'all, because if you didn't show up to listen, I don't think we'd be here.  I do this because I believe in you. And because I love you.  We'll see you on the next 200.  One more thing before we officially, officially wrap up this show. 

Sometimes when I'm listening to podcasts, I have the experience of wanting more. I'm listening at the very end thinking. I sure wish that episode didn't end.  I invite you, if you feel in any way the same way, I invite you to the Special Needs Mom Podcast Community, which is a free group that I host on Facebook, where we as a community of fellow moms who listen to this podcast and are experiencing life in similar shoes, get to talk to one another, get to share stories, get to actually interact.

I hope you'll consider joining. See you over there.