Welcome to Unlimited Parenting, where we discuss parenting children with disabilities or special
health care needs.
My name is Allison, and today I am so excited to be joined by Executive Director of We Are
Brave Together and author of Becoming Brave Together, Jessica Patay.
So let's jump right into the conversation.
So welcome, and thank you so much for being here, Jessica.
I will, before we dive deep into all the questions that I have regarding your book, I was really
hoping that you could start us out by telling us a little bit more about your personal journey
with your son, I believe, but I'll stop talking or we'll give any spoilers away.
I'll let you take it away.
Thank you so much for having me.
Well, my story as a caregiver begins with the birth of my second son, Ryan, who is now
almost 21.
I cannot believe it.
And when he was born, he was born with low muscle tone, so he didn't cry.
He could not suck.
He could barely move.
We spent a month in the hospital not knowing what was going on.
We were working with an OT that specialized in feeding, and we were doing tube feedings
and hoping that he would kind of wake up and get stronger.
And that didn't happen.
And I really needed to go home.
I had a two and a half year old at home and my husband also needed to go back to work.
So I said, just give him a feeding tube.
Just train us.
We will learn.
We need to go home.
We need to take our baby home.
And we were doing all sorts of testing.
And about a week later, we got a diagnosis, thankfully very early on of Prader-Willi syndrome,
which is a rare genetic disorder.
And when you read about it, it is a crazy mix of symptoms because you start out with
a baby who has, you know, quote unquote, failure to thrive because he can't suck and he doesn't
cry for food and he doesn't wake up to eat.
And then it switches into this insatiable food drive that kicks in in childhood.
So Ryan's early years in the early years of PWS are very much focused on milestones.
Most babies and toddlers will have occupational therapy, physical therapy, speech therapy.
And then if you have an endocrinologist that is in support, growth hormone is also indicated
in PWS.
So Ryan started growth hormone shots when he was 10 weeks of age.
So the early years, like I said, it's all focused on milestones.
And then in childhood, this crazy insatiable food drive kicks in that's life threatening.
So kids and adults with this syndrome do not have any signals in their body that tell them
that they've had any food.
So without supervision, without locks on the kitchen, they could eat themselves into a
medical emergency and sometimes even premature death.
So it's a life threatening rare genetic disorder.
It is a spectrum, so how kids are affected in PWS in terms of cognition and medical issues,
physical issues, speech, and the food drive.
The food drive is there for everyone, but it might be displayed stronger in some kids,
lighter in some kids.
Ryan doesn't break our kitchen apart trying to get food.
He doesn't go to the neighbor's houses looking for food.
He does sometimes dig in the trash, but he's not doing that everywhere.
Thank God.
And today he is in the transition program with our school district until he's 22.
We have another year in the bubble, as I say.
And then after that, the next transition feels very scary because we've had a plan since
he was three that he would be in the school district.
So the next season feels scary, but we will figure it out.
I say that Ryan is my greatest teacher and he is also the reason that I started We Are
Brave Together.
It sounds like in your specific situation and your parenting journey, it's a lot of
constant vigilance being on all of the time and making sure that everything is safe.
Is that kind of where that term that I read in your book, extreme caregiving comes from?
Yes.
Yes, there are a lot of caregiving moms that live with such an extreme vigilance because
their child either medically is fragile and requires so much or behaviorally or emotionally
and mentally are fragile and require so much time, so much attention, so much attention
to safety and care and caregiving tasks.
That's where I came up with extreme caregiving.
That terminology really, really spoke to me and my parenting journey as well.
So kind of having someone who can put what you're feeling into words really felt like
it empowered me.
So I just want to say thank you for that.
Oh, I'm so glad to hear that because that is our hope that fellow parents will feel
empowered by reading everyone's stories, that they'll feel seen and heard and understood
and validated, validated, validated.
Absolutely.
So I'd like to also hear a little bit about the nonprofit that you founded.
How did that, I'm assuming it started from your son, but can you give a little more background
on that too?
Yes.
Well, I say that connection and community saved me.
My husband and I jumped into diagnosis specific support groups where Ryan was a baby.
Thankfully they had something in Los Angeles and we found families that we connected with
that we are still friends with to this day.
We had mentors, we had support resources, education, and it was such an exhale of anxiety
and fear when we found community and resources.
And I am somebody who is all about the friendship of women.
I believe so strongly that when we leave behind, you know, cattiness and competition and comparison
that the intersection of our lives is a gift.
And I knew I wanted to do something for caregiving moms, special needs moms, and I just didn't
know what it was going to be.
And so my hands were kind of open and I was just dreaming and hoping for an idea to land
and it certainly did.
And I knew that I benefited so greatly from community and also from getting what I call
mommy breaks, you know, taking weekends off, having date nights with my husband.
And I thought, okay, what if I create a community so that other moms don't have to create community?
They're exhausted, they're isolated, they're tired.
I'll create a community where they can just show up and we will create opportunities for
moms to gather because we believe in the power of gathering.
Whether that's a support group or an event, a half day retreat or a weekend retreat where
they can be surrounded by other women, other mothers who get it.
And you don't have to over explain and you don't have to apologize for your feelings
or your grief or anything that you're going through, the highs and the lows and we will
be there and it will be a safe, sacred space.
And I think that that is so powerful, especially for families who maybe don't have a network
built around them already.
Maybe they don't have family close or they've just moved to a new state and they don't have
tons of friends around them.
They know that they have this place where they can go versus, you know, when family
might come over and you have to say, oh, I'm so sorry, yeah, this is locked away because
I'm supporting my son.
There's none of that explanation like you said.
And another thing that you said really reminded me of another quote that I loved, which is,
I'm going to read it so I'm looking off to the side.
The loneliness of onliness is detrimental to our mental health.
And it feels like the space that you've created really makes sure that your mental health
as a caregiver is really supported.
Yes, yes.
That's our whole goal is to preserve and protect the mental health of caregivers by everything
that we do, the content that we put out, our podcast, our retreats, our connection circles,
which is what we call our support groups, which we have all over the place.
We're really focused on moms.
We are mom centric.
We are really giving moms permission to take care of their mental health.
We are imploring them.
We're empowering them, educating them, and sometimes even begging them to put themselves
first, because moms tend to put themselves last.
Oh, always.
I can attest to that too.
So from this community that you have created and fostered comes this book, right, that
you've titled Becoming Brave Together.
So who's inspiring you to create this?
Well, I definitely have always dreamed of doing my own book.
And then the idea of collectively sharing stories really, really excited me.
And because all writers think that they are terrible writers, and so to give the opportunity
to validate these moms who are writers, more importantly, to give them a voice and a platform
to share their story, because not everyone's going to start a podcast.
Not everyone's going to start a nonprofit organization.
How do they get their voice out there?
And how can I validate their voice and their experience?
Well, let's put it in a book.
Also, I know that our friends and family might only be hearing our story.
And I think just our human nature dealing with pain and hardship, we can easily minimize
what a friend might be going through, because we only know that one story.
But here we're presenting a book with 22 stories, my introduction included, that really can
open the eyes of our friends and family and really understand or try to understand on
a deeper level what we're going through.
And hopefully it moves them to action.
Let me bring you groceries.
Let me be your pharmacy runner.
I'll do your laundry.
The help that we need as caregivers, as you know, it's not just about babysitting or having
respite care professionals.
Yes, we would love friends and family to say, train me.
That would be great.
There are so many other things that our friends and family can do to take things off our to-do
list, which is relentless.
Yeah, never ceasing, right?
I know I don't want you to give too many spoilers away, but what types of stories can people
expect to get from the anthology?
Well, you're going to just hear such a variety of what goes on in the life of these moms.
So we've got different ages of kids represented and different diagnoses represented.
So you're going to learn about maybe some rare diseases you haven't heard of.
You're going to think about an aspect of caregiving that is not a part of your life if you're
a caregiver reading it and think, oh, wow, and be inspired.
I think when we share our stories, we're so strengthened by seeing and witnessing each
other's strength and resilience and love.
There are so many stories in this book which begs the question, not only how did you choose
which stories go in and do you think there's another one in our future?
Well, I absolutely would like to do more for sure.
I have lots of ideas and I want to give voice to more and more moms and I want to shout
the worth of caregivers and caregiving.
So I think more books are definitely in order and are on the dream list.
So how we came about it, we certainly put a call out there on social media.
We sent emails to our community.
We just told everybody that we knew, honestly, like our team, and gave a deadline and said
do a submission and it's hard because you want to include everybody.
You want to include everybody and you think that everyone really deserves an opportunity,
but not everyone is a writer necessarily where we felt like it was either the right story
or the right angle or the right wording.
It was a whole team effort.
It was definitely not my deciding.
It's hard because you don't want to reject anyone's story because you know how important
it is.
It is their whole heart.
It is their whole soul.
But we had to narrow it down to...
I can attest that it is a very diverse selection of stories.
I feel that any parent who is anywhere in their disability journey who picks up this
book, someone in this book that you've created is going to speak to them.
In addition to empowering caregivers and hopefully giving examples to family members of what
they can do to support and how...
What else are you hoping people take away from this book or how they feel after finishing
it?
Honestly, I hope it moves some people into advocacy because our organization is all about
the mental health of caregivers and we are trying to teach and encourage moms to take
steps so that they don't face burnout or if they're having to treat burnout.
However, burnout is not the fault of a caregiving mom who's not engaging in true self-care practices.
It's really a... we have so many systems that are broken in this country.
Not every state pays you to be a caregiver when your caregiving disrupts your career
or ability to work.
We don't have enough respite caregivers across the country.
We're in a massive shortage.
And why?
Because they are not paid enough through the state, through the government.
They could get a better wage working at McDonald's.
So why not go there?
They could get benefits going somewhere else.
And so unless we can lobby and make changes, we're in trouble.
And the rising statistics of kids growing up to become adults in this world, it's rising
and rising.
We have more and more caregivers.
And so I really hope that not only there are people who say, I'll do your laundry, but
there are people who say, all right, let's do a march.
We really have to make some big changes in this country to support caregivers.
And everything starts from a parent, right?
Any big changes that have been made, even if we're talking about Katie Beckett, that
was from her mom.
So all change, I always say, is it comes from parents.
And the fact that you've written this book that leads to that, that speaks to that, really
just encourages and empowers.
So now that everyone listening is jazzed and wants to read this book, where do we find
it?
Thank you.
You can find it easily on Amazon.
Just look up Becoming Brave Together.
It will pop up.
We have a paperback and we have a digital version.
We would love for you to purchase the book and leave us a review and a rating.
That would be amazing and generous of you.
Yeah.
Thank you.
You can count me in on that for sure.
I wanted to circle back to the community that you've created.
And I know that you had mentioned that it is not just in California, it is spread out
almost everywhere.
I want to ask, we're in Idaho.
How do you suggest if anyone listening to this wanted to bring this community to their
community, what is the best way for them to do that?
Well, they can certainly just reach out to me at hello at wearebravetogether.org and
say, how do I bring a connection circle to Idaho?
And we can send them information.
We have an info sheet.
We have an application process.
We have an agreement.
We explain what's involved.
It's a volunteer commitment to be a connection circle leader.
We train you.
We give you a training guide.
We give you a mentor that will reach out to you on a monthly basis to support you.
And so we have a very intentional plan for our connection circles.
And we would love to start a bunch in Idaho.
Yeah.
I think that Idaho is very much an opportunity for this to come in.
And I'm glad that our listeners are hearing you and hearing your voice and hearing your
passion so that they know that this isn't just I submit an application and then bam,
I've started it and I get a t-shirt.
There's a lot more.
There's a lot more that goes into it, a lot of training and a lot of support.
And I think that that is going to make people feel a lot more comfortable.
So I appreciate you saying that.
I'd also like to hear a little bit more about your podcast.
It's got a great listener base.
You've got tons of reviews and downloads.
I'm so proud of you.
It's a lot.
I know what it takes to start one.
So that's a huge, phenomenal accomplishment.
What are some of your main topics and when are new episodes released?
So new episodes are released every single Wednesday and we have three types of episodes.
We have story episodes.
So a mom, sometimes a dad, sometimes a sibling will submit a story 500 to 700 words and then
our team will review it and approve it and then produce this beautiful story episode
and we'll obviously interview the writer.
We also have ask us anything episodes with Dr. Zoe Shaw and Susanna Pace-Lavelle, who's
a master coach.
These are available to anybody to call in.
You can call in and leave a message.
You can leave it anonymously if you want and you can ask us a question.
So for example, we received a call saying, my child is being bullied at school.
What am I supposed to do about this?
And so Susanna, Zoe and I will then dive into the topic and respond to the question.
And then we have a third type of episode, which we call our practical episodes and we
usually interview an advocate, a therapist, an expert, a coach on a particular topic that's
been requested.
Wow.
So now, I mean, you're getting parents' perspectives, you're getting doctors' perspectives, you
can leave an anonymous question.
That's really breaking down barriers for really anybody to see.
I mean, phenomenal.
I have one more question because we here at iPoll, we are Idaho's parent training and
information center, as well as the family to family health and information center.
And I was just curious not to put you on the spot, but at any point in your journey as
a parent, did you lean on your area's parent training and information center for support?
So we in the state of California, we have something called regional centers.
There's 21 regional centers in the state of California.
And I've definitely been to training through the regional center, through the state.
I think most of my training that I've received has been through the Prader Willie, California
Foundation.
They have conferences, they have trainings.
And so I've mainly because I needed some Prader Willie syndrome specific behavior training.
And they have such a great arm of advocacy, you know, helping with IEPs and even when
we had issues getting growth hormone, that kind of thing.
But we definitely our regional centers definitely have a lot, a lot of seminars and webinars
and stuff that they that they put on that I have attended.
That is so great to hear.
I love when people say, you know, I found my I found my center, they were able to support.
And even just that you were able for your son's disability specific that there was a
network for you to reach out to that is so crucial.
And Idaho being, you know, in some parts, not even just rural, but frontier, there's
a lack sometimes of resources in some of our areas.
So just that you can show that they exist and that you've accessed them really helps
us as well.
I guess I just want to ask, you know, we've really talked a lot about the book and the
podcast and your community that you've created.
Is there any parting thoughts or anything you'd like parents to know?
Well, I want all parents to know that to have a sense of belonging is your birthright.
And so to be in community with other people who understand your circumstances to be in
a non judgmental community is your right.
And you deserve that.
And I know you're tired, exhausted, and maybe even a little bit afraid to attend some sort
of supportive community or support group, but it truly is energizing to be with other
people who get it.
And I know that as the primary caregiver, you're busy, busy, busy.
And the like you said, the unseizing to do list exists and you deserve to take care of
your mental health.
You're the most important person in the family.
And if you go down, the whole ship goes down, so please, please take care of you.
Isn't that the truth?
Well, Jessica, I just want to say a huge thank you for taking time out listeners.
You don't know, but it's a very early where she is.
So she has taken time out of her morning to spend some time with us today.
Please go out and buy her book.
You can find it on Amazon.
You can reach out to me and I'll tell you where to find it.
And then we hope to see more and hopefully you get lots of requests to bring your community
to our community.
So thank you so much for your time.
Oh, thank you.
Thank you.
I appreciate having this time together and getting an opportunity to share about the
book and we are brave and brave together the podcast.
So thanks.
Absolutely.
Thank you.
Thank you so much, everyone out there in podcast land for listening in.
As always, if you are in Idaho or moving to Idaho and have any questions on systems and
services for children with disabilities, please consider reaching out to us on our website
at I pull Idaho dot org that's I P U L Idaho dot org or by calling us at two zero eight
three four two five eight eight four.
Be sure to tune in next time.
Until then, this has been unlimited parenting.
Thanks for listening.
Polish.