Amanda Cunningham knows how frustrating it can be to search for a solution to a problem only to discover that there isn't one to be found.  You have to solve your own problem and create your own solution.  It can be frustrating, but it can also be an opportunity. Amanda Cunningham did just that and shares her story with us today.

Connect with Amanda on Facebook, Instagram, or her website -- you can download your own copy of the Caregiver Burnout Printable. 

Amanda's favorite resource is Instacart 

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This is a transcript of the This Mom Knows Podcast - Episode - 45

Jennifer Uren
Amanda Cunningham is mom of three and founder of the glory days company. When her daughter Rory was born with an unexpected diagnosis of Down Syndrome, she found herself overwhelmed as she faced a whole new world of multiple doctor and therapy appointments, all while figuring out at the same time how to become a stay at home mom of two. In her search for tools to support her in this new role as a special needs parent she didn't find anything. So out of her own desperate need, Amanda created an organizational system that is now the Glory Days Daily Planner, the first daily planner for children with special needs. This planner has now launched an entire line of products which serve parents who are living the day to day with a special needs child in their home. So welcome, Amanda.

Amanda Cunningham
Oh, thank you for having me. What a wonderful intro you did.

Jennifer Uren
Well, thanks. Um, it gave us a lot of information about you. But why don't you just fill in some of the gaps and tell us maybe where you're from and a little bit more about your family?

Amanda Cunningham
Of course, of course. So we are in North Central West Virginia, and I live here we are family five, I have my husband, Evan, we've been married for 10 years. And then three children Irwin, Rory and our youngest, Wyatt.

Jennifer Uren
Okay, and how old are your kids?

Amanda Cunningham
Eight, four and two.

Jennifer Uren
So you're in the thick of it with all sorts of developmental stages.

Amanda Cunningham
Yes, yes, we really are. We're very busy.

Jennifer Uren
Yeah. So today, we're gonna talk about something that you know, which is kind of building a business to meet your own needs. Yeah. So let's go back to the beginning. Rory, is your second child is that correct?

Amanda Cunningham
Yes, she is. She is four.

Jennifer Uren
So was the pregnancy itself any different? Because I don't know I don't understand or know if Down syndrome is often diagnosed before or after or how that works. So what was, what was, um

Amanda Cunningham
Normally it is diagnosed prior because there's a blood test that you can take. It's a quad is what they call it. And I was not advised to take that because I was 28 years old. And it was my second pregnancy. We had no family history, and you know, all of these other things. And so the doctor didn't recommend it. And so I let it pass. And we did our normal ultrasounds just like you would do in any pregnancy. And it didn't come up on the ultrasounds either. So she just surprised us nine months later. And it's it was quite an event. It was quite a shift in our day to day life.

Jennifer Uren
I'll, oh, most everybody listening is a mom and we can relate to that challenge of adding a newborn to the family, but what is different? What is, what is it like adding a child with special needs? You mentioned in the bio, the doctor, the therapy appointments, but maybe describe for us like what is a typical day with a special needs newborn like?

Amanda Cunningham
Look like? Yeah, well, I would say in our case, Rory arrived and she was healthy. She had two small holes in her heart, but they closed at four months old. 50% of children born with trisomy 21 normally have open heart surgery by three months old. We did not walk that path, but many do. So my newborn experience was more about the emotional state that I was going through processing an unexpected diagnosis and acclimating to what our future was going to look like and trying to absorb all of that, while res- healing and responding to an infant and from birth. And then I had my three year old at the time, Owen, too. So my differences, mostly were in my emotional response to her diagnosis. But in the day today, we would have anywhere from three to four therapists coming into the home Monday through Thursday. And it started when Rory was seven days old. When we came home from the hospital, our Early Intervention Team was at our home waiting to enroll her in the program.

Jennifer Uren
Which is a blessing but that is a lot to coordinate.

Amanda Cunningham
Yes, it was a lot to take in. I mean, like I said that emotional process took me about six months, I'd say to go through the process of grief and acceptance. And then in that time, I was also needing to absorb all the education that I was being provided with of how to implement physical therapy, occupational, child development, nutritional needs, things of that nature.

Jennifer Uren
Okay, so, so was that what it was that made you go I don't just need a planner to manage appointments. I need a whole system to manage all the things that I'm supposed to do between appointments and all of that or, you know, basically, what was it that you were looking for and couldn't find?

Amanda Cunningham
Of course, so like I said I had a neurotypical three year old, previously had been in a career for 10 years in public relations. And then boom, I'm a stay at home mom, and we have all of these appointments. And I was having a hard time motivating, motivating myself to get up and do those therapy responsibilities, the homework that was left by the practitioner, because they would come in the home for 30 to 45 minutes. And then it was on me for the next seven to 10 days to do the work. And when I went to the marketplace to try to find a tool that took the tracking of everyday life, normal everyday life, and paring it with the added responsibilities of raising a child with a disability, for example, therapy and appointment tracking, there wasn't anything out there that had it all in one place, it was all separated, or non-existent, depending on the topic. And so I had to piece together an organizational system utilizing notebooks and dry erase boards and these big windows in my living room.

Jennifer Uren
Okay. So you didn't find the solution, you pieced your own together. And that's how it often is right? We have a need, and we don't find it. And so we create the solution, which, like I hate to cook, and I've come up with a stellar meal planning system, and I don't want to be known as the meal planning person, because that's not what I enjoy. Right?

Amanda Cunningham
Yeah, isn't that funny. Yeah, I say that all the time. I'm not organized. You know, I'm not miss organized to can advise you want to be the most organized person. And that's why I created this planner, because it wasn't my strongest area.

Jennifer Uren
Yeah. And here you are being known for your planner.

Amanda Cunningham
Yeah.

Jennifer Uren
So so how is it different than like, does it have the traditional calendar? And all of that? Yes, it's set up in different sections? Or do you have like four or five pages per day so that you're tracking all these things? What's it kind of like?

Amanda Cunningham
So it's very similar in terms of like the aesthetic of it, it's very similar to something that you would get in a mainstream store in a retail location. And the reason I wanted it to be that way is a lot of times, if you're a medical mom, a lot of things are clinical feeling. And I didn't want them to have that feeling. I wanted this to be peaceful and calm, and remind them of the things that bring them joy in everyday life. And so the outside is very similar when you open it up, what makes us different is we have two therapy tracking pages per every week. So you have a Monday through Friday chart twice, so you have two of these at the beginning of every single week, to help you write down those protocols that your provider gives you so that you can check them off as you implement them with your child. And then next to it is a wins and concerns box. And we put that there so they could write how that child's responding to therapy. And the parent would be able to reference that in conversations with the provider so the provider was creating a protocol based on how the child responded to the previous day's implementation, not just grasping or following a generic protocol, they can really craft it around your child's unique needs due to your tracking in our planner.

Jennifer Uren
Okay. And now you're not trying to just go oh, I need to remember to tell them this because you're, you're writing it down and it's all in one place.

Amanda Cunningham
Yeah. And sometimes you can have four to five different therapies in a week.

Jennifer Uren
Yeah

Amanda Cunningham
So that's a lot to remember.

Jennifer Uren
Yeah, we unexpectedly adopted our younger two, which is a whole nother story. But the baby had been four months premature. And so we suddenly found ourselves with all these therapies, and I'm listening to this going, that's what I needed because it was, it was really hard to remember to do and to remember what to report. So that sounds wonderful.

Amanda Cunningham
Yeah, and there's this whole process of frustration with self, and feeling inadequate and feeling like you're not equipped for the role that you've been called to. And it's not that you're not equipped it's just you need the support, you need items that support you managing this onslaught of information and education that you weren't prepared to receive or to provide to somebody else.

Jennifer Uren
So did the mom guilt kind of feel even bigger? I mean, it's, it's bad enough when you're like, I didn't even get laundry done. But now you've got all these other layers. I suppose that really add to that?

Amanda Cunningham
Yeah, they do. They they lay it on there. I would say I mean, it's something it's it's a lot heavier. I mean, we all want our children to thrive. You know, it doesn't matter, neurotypical or not we all want our children to thrive. In Rory's case. I feel like if I failed to meet a need that she has, or I'm not doing putting in the work with her showing up to an appointment because things get overwhelming. It's doubled down because her ability to have independence in the future is very dependent on my engagement now in my work with her now, and that's going to affect our entire family. So you know when I missed the mark, yes, the mom guilt is pretty heavy.

Jennifer Uren
Yeah. So you made this planner, you have the system, how did you start to connect it to other, you know, know that other parents would have it? Did doctors notice you using it? Or did you just sort of start telling people?

Amanda Cunningham
No. So it was it's a really serendipitous experience that I think happened because, you know, when you're when you receive a diagnosis, at the time, it feels like worst case scenario. At the time. It doesn't now. And because of that I was in this mind state of what what do you have to lose? So six months into using this tool myself, what I created for myself, I was drying my hair one day, and I just had this random thought crossed my mind, "if you need a planner, other people do you need to make a planner." I put my hairdryer down at walked out, my husband was making the bed and I said, "Evan, I need to make a planner." And he's like, "Good, go for it." And so what I did, over the next week set proceeded is I started to reach out to people who knew how to do things I didn't know how to do. So I formed the right team. And the first teammate that I reached out to was Nicole Yang, and she's our designer. And she helped me create a digital version of what I was utilizing myself. So I was just scratching charts on papers and on dry erase boards. And she translated my sketches into a digital product. Then I went to my soc- social media where I had formed connections with other parents in the special needs community in the disability community. And I asked them if this is something they needed. So I did a survey. And within minutes, I had over 200 responses that yes, it was resounding 90% 95% of these women needed this tool, they were willing to pay for it. And they needed it. And so then we formed a demo team. And that demo team was 55 parents across the US and Canada who tested a 30 day version of our planner and then provided feedback. And then we launched in November of 2018.

Jennifer Uren
Okay

Amanda Cunningham
So that was our first year. That's kind of a long story. But it all just, it all fell together. And very magically, I know that sounds crazy, but it just seemed to just hit it the right time with the right people.

Jennifer Uren
Yeah.

Amanda Cunningham
And it took off.

Jennifer Uren
Oh, I love that. That is that's great. So you've already got you, you know, really unique challenges as you're balancing, you know, the priorities of your family around the needs of your, your daughter and all of that. But now you're a mompreneur and you're launching your planner, what was the biggest challenge that you faced as you built your business in sort of keeping things in balance and integrated with home?

Amanda Cunningham
They're first, that's the first thing is that I've just come to realize that as a mom of three, there's not balance, it's prioritization and that priorities- that prioritization is juggled. And it's juggled with them being first than than the other things below it. And that means that I cannot strive for perfection in this season of my life. Because when I do, I'm miserable, because it's not achievable right now.

Jennifer Uren
Right

Amanda Cunningham
So there..

Jennifer Uren
Or ever

Amanda Cunningham
Or ever. So yeah, it might be easier someday. But right now, with these young ones, it's just not something that I can, I can expect to happen to have the perfect day where everything falls into place. And I'm, I'm meeting all of my to do's. So I'd say in terms of balancing, it's just realizing I can't, and doing the best I can. And I think too, I have a very gracious and understanding community. You know, like the people that I'm serving and communicating with on a daily basis are living a very similar life to myself. So they have compassion and understanding, you know, when I'm not engaged and online, or things are a little bit slower, they know why. And I'm very transparent with them about that. So I think that plays a lot into it also.

Jennifer Uren
Mm hmm. So as you built this, you know, what is you know, what is, besides your planner, besides your system? What is a resource or a practice that you stumbled on that really did help you keep those priorities of home and business in check, especially as it related to making sure that you are meeting you know, Rory's, Rory's needs with therapies?

Amanda Cunningham
Yeah, so something that I implemented and I don't even really know where I picked it up. I think it was just understanding my own personal capacity was I don't say I only have three things that I commit to in a day, like I would never over booked ourselves outside of three things. And I mean, that's three major things across the board, you know, so no more than, you know, a doctor's appointment and two other things and if we had something going on at school that would count as that, because I just knew, like with the variables that there was just, you know, always going to be something that caused disarray. And I just didn't feel like I had the capacity to meet more than three demands in a day. And that has really helped me not over schedule myself or set high expectations. And I would even say, after I had a third child that sometimes that drops to one or two things a day instead of three.

Jennifer Uren
Okay. And so that might be a business call as one of those.

Amanda Cunningham
Yes.

Jennifer Uren
Okay. Yeah. So and that's not to say you only do three things. But these are three major commitments. So you might have a list of eight or nine little things, you're still going to try to accomplish.

Amanda Cunningham
Of course, yeah, but three major time commitments in my day. So for example, today, we had our first packaging day at WorkAble, which is a facility that employs adults and teens with intellectual and physical disabilities. So that was a major commitment today. And then I had to be speaking with you. And then I had one other interview. So I knew today was a high demand day. That doesn't mean that my children are still not going to school and still need dinner and all those things. So I called in support, you know, my husband had to take on some extra responsibility today, we had a babysitter in the evening. I don't want anybody to ever feel like, you know, they need to do it all. You have to be able to ask for help and find the people that can provide it for you.

Jennifer Uren
Yeah, yeah. And I love that you're using that, that organization for the packaging, I have an uncle who has worked, you know, he's been one of those employees.

Amanda Cunningham
Oh, ok.

Jennifer Uren
And it's fabulous for him to, to have that, that meaningful work in his day. So that's wonderful.

Amanda Cunningham
In the community. It was a great day. It was, it was a wonderful day.

Jennifer Uren
I'm so glad to hear that. So what are some of the other products that this has launched?

Amanda Cunningham
Yeah. So we started with the planner. And then due to COVID, we shifted a little bit and we started to create journals, paperback journals. And so we have a medication tracking journal, a therapy tracking journal. And then we have a gratitude journal for caregivers that's specifically designed for a caregiver. We also have victory plans, sticky pads. So they're pretty large sticky pads where you can plan out five days of activities with your kids where you can write those big three down, like I say, and you can stick it onto your refrigerator and reference that. So there's just all kinds of products brewing up here. And yeah, you know, they keep coming. As Rory gets older, the products really evolved to meet the needs of her time and the time that our communities find themselves in.

Jennifer Uren
Yeah, so do you. Do you find that these are mostly mostly being birthed out of your own need for it? Or are you hearing from people and going well, I could make something to meet that need, even though that's not something I would use now.

Amanda Cunningham
Yeah, no, I hear from our community a lot. They- testing the demo. And then the feedback over the years, our internal pages have evolved over time from the feedback we received from our community. Because we don't just provide this planner to families within the Down Syndrome Community. It's it's across the board, all developmental delays, disabilities, medical complexities. So there's some people facing things that I don't see in our day to day life. And they recommend items that we can add to our existing products or some products that we can start to create in the future to meet those needs.

Jennifer Uren
Okay. That's excellent. I love that. Well, it's not uncommon, like we've mentioned for something to be birthed out of our own needs. But what would you tell the mom listening who has been resisting creating the thing that she needs? She's been looking everywhere, but can't find it. What would your encouragement be to her as a future mompreneur?

Amanda Cunningham
Yeah, well, those whispers those naggings are not there for just to torture you. They're there because you're being called into something and you have the opportunity to say yes, or to say no. And I would have to say if you say no, that it's gonna keep it's gonna keep tapping on you. Because it's your specific gifts that are able to bring it to be.

Jennifer Uren
That's good advice. Don't ignore those, those nudges.

Amanda Cunningham
No.

Jennifer Uren
What's next for glory days planner.

Amanda Cunningham
I hope so many things yes. I hope we can continue to have good sales so that we can employ our partners at WorkAble that's very important to me, because as teens graduate high school, when they have disabilities, it can be really hard to find next steps for them and community for them. So you know, watching my daughter grow and thinking of her future, partnerships with WorkAble and other entities like that means so much to me. And then our product line is going to continue to evolve and expand and the weeks and months and years to come.

Jennifer Uren
Yeah. So is it more mostly available online? Or is it in stores? Or do you sell it through doctor's office and therapists or...?

Amanda Cunningham
It is in all the above, so we just went wholesale for the first time this summer. So there are stores across the United States that are selling them. So you can find them in local shops at this point. It's not in big chain retails, but it is in local boutiques and paper based stores. And then we have partnerships with entities in our state, like Birth to Three, that early intervention program that I talked to, hospitals, nonprofits, and therapy centers are utilizing our tools, but they can be utilized in any area. So if the listener feels like our products would be relevant to a population they serve, or in a facility that they attend themselves, please, by all means, pass our information along. We would love to connect our resources to more families across the US.

Jennifer Uren
Yeah, I was gonna ask would this be useful if somebody is working through like a cancer diagnosis, and they're managing things or you have a loved one that's starting down the road of dementia, and there's all sorts of things you're managing?

Amanda Cunningham
Most definitely, it was born out of my need as a special needs parent, but it is, you know, applicable to anyone in a caregiver role. If you're caring for an elderly parent or a spouse who is, you know, like you said, receiving cancer treatment or any any kind of therapy, it would be supportive to that that caregiver.

Jennifer Uren
Okay, well, that's excellent. I feel like I'm going to see you on Shark Tank sometime, so.

Amanda Cunningham
Oh, my gosh, if only, you know, when we went to New York to launch our wholesale, that was something that was said to me more times than I can count.

Jennifer Uren
Really? OK!

Amanda Cunningham
Yeah, it was.

Jennifer Uren
One day, and then I'll be like, "I interviewed her."

Amanda Cunningham
One day! We'll put it into the universe and hope for the best.

Jennifer Uren
That's right. Oh, well, I I just love that you have done this. I love that, you know, and whether Rory knows it now, or will ever really understand just the depth of the love and support that this has been for her, we all see it. And so

Amanda Cunningham
Well thank you.

Jennifer Uren
Well done. Well done, mama.

Amanda Cunningham
Thank you. She's inspired at all I really hope that she gets to be - she's a part of it now, but I look forward to her in the teen years being able to be more hands on.

Jennifer Uren
Yeah, yeah. So this has been a great conversation. And as we wrap up one of my favorite questions to ask every guest it's a little more lighthearted and fun. But what is your favorite time saving gadget, system, or tool besides your planner?

Amanda Cunningham
Oh, I'm going to have to say, what is it called? Instacart.

Jennifer Uren
Yes

Amanda Cunningham
Yes. I cannot the hours I have saved from being able to order our groceries. It's a game changer.

Jennifer Uren
Yes. Isn't it wonderful?

Amanda Cunningham
Yeah. Love all of those apps now that just bring things to my door like magic.

Jennifer Uren
Yes, it is. Yeah. And that's I mean for for any family with young kids, but especially when you're juggling all those other things. Anything that delivers is just like

Amanda Cunningham
next level, yes.

Jennifer Uren
Well, Amanda, how can people connect with you? Where can they find you? And then I know you have a free resource, the Caregiver Burnout Printable, why don't you tell us about that as well?

Amanda Cunningham
Yes, so you can find us at the GloryDaysCo.com. In on our homepage, you're going to see the sign up form to receive that free PDF, the Caregiver Burnout, it's five tips to avoid burnout as a caregiver, it'll be delivered straight to your inbox and you can print it off and hang it up on your fridge or in your bathroom as a reminder. And then if you'd like to see us in the day to day learn tips about how to utilize your planner or just hear from experts that we bring on to our Instagram page. You can follow us at the GloryDaysCo on Instagram.

Jennifer Uren
Excellent. Well, thank you so much for your time tonight. And I will look forward to seeing where this goes and all the new products that that are birthed out of this in the years to come.

Amanda Cunningham
Thank you so much for having me.