Show Notes

 

Heather Stone founded Stone Insurance in 2003, delivering insurance options that are tailored to each individual's needs. That same spirit of personalized care led to her becoming a special needs advocate and establishing Invisible Parent as a valued resource.
Heather's passion for making health insurance both simple and understandable for all was ignited when her disabled son developed health problems at a young age. That drove her to focus on finding affordable health care solutions for all, whether through private insurers or public options such as Medicare and the Health Insurance Marketplace.

"When my son Noah was first diagnosed as a child with a disability, the daily stress began. Over the next 20 years, I’d lay in bed wondering how I would fund a child with a lifelong disability.

Questions without answers overwhelmed me. Do I save for his retirement or mine? Am I getting the best medical care for him? Would he ever drive, find love, make friends, or find a sense of independence? Why is it so hard to get help? What happens to him when I die?
All too often, parents and caregivers are consumed with worry. As Noah transitioned into an
adult, I wished I had worried less and enjoyed the journey more. With the proper support and the ability to let go of fear, Noah now lives his life to the fullest potential.
Hope is at the center of our journey. My hope is that you will find it on yours."

 

 

Are you still in shock that you are a parent of a special needs child?
This show is for parents who are morning the loss of the life and child they thought they would have. For parents who are tired, lonely, and see no hope in sight?

You will learn how to deal with your non-verbal child with a sensory processing disorder, seizures, meltdowns, haircuts, and family trips. Embark on a journey of consciousness, self-care & meditation.

My name is Chad Ratliffe. I am a single father of 5 kids 6 years of age (8-14) and 2 with special needs. 5 years ago, in a nasty divorce, my depression led me to drug addiction and hopelessness. Today, I share with others a life I never imagined possible.

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SUMMARY KEYWORDS

parents, child, noah, son, group, child welfare services, kids, caregiver, special needs, naked, aggression, home, journey, life, book, challenging, happen, therapies, parenting, program

SPEAKERS

Heather Stone Downey, Chad Ratliffe

 

Heather  00:00

Taking care of yourself as priority, your child will still be disabled tomorrow. And she was very offended when I said that. But she called later as I get it now, you know, I think that we're just so in panic mode all the time and we're just we're not giving ourselves time to breathe and grieve, you know, we have to kind of grieve that our life does not look like we thought it was gonna look like, you know, this is not our dream of parenthood, and it sucks and it's okay to say it sucks. And it's okay to be yourself and it's okay to go to the mall or go hang out with friends or do whatever, you just got to get the supports in place very early so that you can do that.

 

Chad Ratliffe  00:39

Welcome to the daily naked parent podcast brought to you by Rocco glue. The first ever brand focused on supporting parents with special needs children. A good parent nation is a group of parents with special needs children, who are willing to give honorable, stripped it all down and take a look at ourselves, our parenting, our family and our plans create a life beyond our wildest dreams. On today's show, we'll be discussing hidden secrets of special needs parents, hello naked parent nation, and welcome to today's episode of The Naked parent podcast. My name is Chad ratliffe, and I'm your host. Before I introduce you to our guests today, let me start by sharing a message from naked parent nation. Naked parent nation is a worldwide community of parents and professionals raising children with all kinds of needs. We come together to share Naked Truth support our fellow parents, and inspire the inner growth that each of us needs to build the life and family of our dreams.

 

the parents that are struggling, we want you to know that we will love you until you can love yourself or your children, we pray and send power from our collective group. As we come to understand our divine nature, we realize there's no need to feel sorry for ourselves, be angry or feel lack, we come to understand that our feelings of limitation and separation are only in our minds. Through Self Realization, we expand our consciousness so that the challenges that perplex us today, dissipate one by one until we're able to see and experience gratitude and beauty and everything, just as it is. We have the power to create any kind of life we want for ourselves and our families. We do this by living in the naked present moment, one day at a time. This is the process of naked parenting, whether it be your first step or your 10th. I'd like to welcome you to naked parent nation and the naked parent podcast. On today's show, we have Heather Stone, who is a business owner and author and an amazing person who I can't wait to share with you and I can't wait to learn more from so Heather, welcome to the show.

 

Heather  02:57

Thank you so much for having me. I appreciate it.

 

Chad Ratliffe  03:00

Yeah, we're excited to hear about your journey and your expertise. And so we can get to know you better. Can you just describe you and your family life and your setting just so we can have a better picture of who you are?

 

Heather  03:15

Sure. My name is Heather and I have several children. The one that keeps me on my toes is my son Noah. Noah is actually now 23 years old. So I've been on the other side of autism parenting for sure. So I have him I have two daughters. And then I have two other little boys that I recently adopted, as well. I own a health insurance agency. I started that when Noah was sick and health care reform wasn't health care reform wasn't a thing yet. I figured it out and kind of started helping other parents in the hospital, figure out their health coverage. And it just kind of happened from there, you know, so it's awesome. Yeah, for sure.

 

Chad Ratliffe  03:56

Can you tell us when the special needs part of your journey came on the radar? Like was it early on? Or was so

 

Heather  04:04

my son Noah had a childhood stroke. So he had a stroke when he was three years old. He was born walking, talking me and his milestones perfectly. And then you know, it just kind of unfortunately hit us like a ton of bricks. At the time. I was a very young mom, I was a teen mom with a you know, critically ill at the time, three old little boy. So you know, I had to navigate things on my own back then. No, everyone didn't have access to the internet. You know, it wasn't really a thing like it is now. So I learned how to navigate the system through some providers, some parents that were kind of sharing stories, and there wasn't this big connection. So it was challenging for sure.

 

Chad Ratliffe  04:45

Wow. Did the stroke sort of Ignite the special needs or?

 

Heather  04:52

Yeah 100% So for a while Noah was completely deaf. He was nonverbal. He's like partially verbal now, but he was not verbal, extremely aggressive, the aggression did not stop. And Noah is now placed in a group home because of the aggression. But it did it started as soon as he was, you know, three years old. And he just kind of started to get his bearings back, you know, with therapies and time and sometimes natural play and just kind of letting them be a kid. So, you know, he functions to the best ability he has now because we as a family, really, we push him to the limits. And you know, for a lot of parents, sometimes that's really uncomfortable for us, you know, but we all learn by failing. So, you know, Noah has a YouTube rap video, and he has apraxia and aphasia, and he doesn't speak very well. But that gave him confidence. So he always liked music. So I put him in singing lessons. And he, you know, always like to play hockey and everyone's screaming, don't do it. Don't let him he's a stroke. He has a head injury. He has epilepsy, what do you think in and I put the kid on skates. So he definitely I pushed him to kind of the best of his ability, and he is thriving.

 

And that was, you know, the reason that I decided to write my book, because every day I would go to sleep. And you know, it's hard when you're going to the therapies and you're going to the schools and you're going to the IEP meetings, and they're telling you, your child can't do this, and your child can't do this. And you know, there are things that they can do, and I didn't listen to, you know, all of the camps, I made sure that I kept my own identity, which I think is really important in our community. There, there wasn't any support. So I wanted to make sure that once my journey was kind of starting to go into another phase that was going to be able to support moms behind me.

 

Chad Ratliffe  06:35

Wow. So aggression being one of the big challenges that Noah in the family faces that's been going on for

 

Heather  06:43

20 years now. Yeah. And that is, you know, that is the one thing with the autism community, which in my book, I bring up aggression a lot. And I feel like there's a lot of guilt and shame with parents that have aggressive kids. And I understand not all of them do. But there's, you know, there's a lot of guilt and shame, we don't like to admit it, we don't like to admit sometimes that you know, it hurts, and it sucks, and it can be domestic violence, and it's not their fault, they're never gonna say that it's not their fault, it's their way to kind of STEM sometimes or get their aggression out. But it's traumatic. And every time I've talked to a parent, or have been on a chat group or support groups, like they hear violence, and then everyone I feel like just kind of starts, like backing up, you know, it is real, and it is painful. And I had to make a decision, at some point, that if I didn't place Noah into a group home, then you know, something very serious was going to happen to either myself or my other children. I was married to a police officer at the time, and the cops were at my house, like every other day.

 

And we had to Baker Act and do a bunch of stuff. So for me, group home placement was the best thing that I did. And I know that that's not, you know, the best place for everybody. And sometimes, when Special Needs parents here, group home, hands go up, not giving up my kid, I'm doing this forever, I'm the Forever parent and he's gonna live with me in school, you know, I expire. But you know, it can be a really good fit for people. And I don't feel like there's a good light on group homes or independent living or supportive living or whatever it's called within the state. But I will speak for my son and the 14 other kids that I see once a week. It's, it's been amazing for my child, I pretty much, you know, put them in a frat house, you know, he's 18 years old, everybody that he lives with, has, you know, the same abilities as he does.

 

And, you know, they have a community and they're very, very happy, you know, we see each other quite often. And when I first did it, you know, I got so incredibly shunned by the special needs community. But you know, they didn't see inside my house, they didn't see the secrets, they didn't see the bruises, they didn't see the you know, chasing us around with a hockey stick. And I for years, you know, and not just had myself deal with that, but my children as well. So, once the guilt and shame of myself, you know, I had to go through the guilt and shame of making that decision on my own. And after kind of continued from the community. I've just decided to stand up not going to sit down anymore. And I'm going to stick up for the parents behind me that are struggling with the same thing.

 

Chad Ratliffe  09:08

Yeah, you know, I get told about one of my kids that I need to put him in a group home. My challenge was the one home he was in, when I didn't have control, I would show up and he'd be laying on the ground with a dirty diaper not moving and he can't not move. So I knew that they had they had to drug him. And they weren't very informed and he had no voice.

 

Heather  09:30

So voice is a big deal. It absolutely is. And each group home is different. And I so I am a psycho and I went and got a certification to I first I thought I was going to open a group home because I didn't want to give up that control. So I was like, I'm just going to do it myself. And I went and got certified and then I started volunteering at all the different group homes in my area, just because they wanted to see what it was like and what I've heard from other parents. I just needed to be there on my own. And there are some good problems that are terrible. And there are some that are kind of okay. And you know, I was able to choose one that was a good fit for my son, which every state does not let you do that. But you know, unfortunately, sometimes it is trial and error.

 

 And it is it is not a good fit for every person and every state has different requirements. And you know, but for my son in his situation it did, it worked out very well. At the same time, my son can pick up the phone and say, hey, something bad is happening. You know, and, and I mean, I can understand, and most people can't, but that's that was very important for us as well. And if I had dinner, I don't know if I would have made the same decision. But I know that we definitely could no longer live the way that we were. And my children didn't deserve to get see mommy and crisis all the time and get attacked. And yeah, it was, it was hard to say.

 

Chad Ratliffe  10:50

Yeah, yeah, for sure. I'm glad you're talking about it. Because I think it's one of the things, one of the secrets that people aren't talking about. And then what you suffer in silence, and who does that help,

 

Heather  10:59

it doesn't help anyone. And you know, the out of 10 parents, only two or three may actually say, Okay, this is a good fit for my child, but nobody advocates for, for, you know, let's exploring that. And some of these stories, and very tragically, and you know, I just want to make sure that that doesn't happen.

 

Chad Ratliffe  11:17

Tell us the inspiration for the book and what we learned about when we read the book.

 

Heather  11:22

So the book kind of goes through not just my journey, but other parents journeys, as well. I interviewed probably 20 different parents and kind of everyone's has the same fears, what's going to happen when I pass away? Who's going to take care of them? How can I afford this life? You know, and there's a you know, there's a huge identity crisis. And it depends on on the level of stress that we have, as well. But I think so many parents, when I ask someone, you know, tell me about yourself, they tell me about their child, they're not really telling me about themselves. So you know, self care, obviously, is very important, which, you know, everyone says, yeah, it's great, where do I have the time, so my book will say, you know, where find some resources to get the time, we kind of all you'll also in the book, realize that I think that all of us have mental health need, you know, for sure, we spent a lot of time you know, getting our child therapy, but very, very little time, getting us therapy as well.

 

So I have some, some tips in there. And some things like given our in some camps that are kind of respite care options, and, you know, some some ideas as well, I go over dating. For both parents, I feel like a lot of parents refuse to date and crap, in my opinion, because our children can be loved by other people. You know. And I have some examples of that. And it's just, you know, a book of hope for people who are, you know, struggling and saying, you know, that in this in the guilt and the kind of in the victimhood of kind of being in this life and finding some solutions and some light at the end of the tunnel to, you know, put ourselves first

 

Chad Ratliffe  12:58

and the name of the book, and where can we find it.

 

Heather  13:01

So it's called Invisible parents. It's the hidden secrets of special needs parents, it is on Amazon right now, a Kindle version, and or you can get a paperback version sic 1499. And if there's any parent that can't afford that, I will happily mail them copy.

 

Chad Ratliffe  13:18

The process of writing the book for you. I mean, that's a big undertaking.

 

Heather  13:22

Yeah. Well, I wrote a book and now everybody's tick tock. So you know.

 

Chad Ratliffe  13:28

So how's the journey been for you? I mean, you have a lot of kids, you've, you've been through a challenging journey, assuming highs and lows, how you navigated for the last 20 years.

 

Heather  13:39

So I've always tried to keep myself of my sense of identity. So like, I had to learn to compartmentalize like, this is, you know, Noah's behavior, and then I took in another child as well, for a while, that was special needs as well. So then I had, you know, to at one time, and then you know, but I had to just compartmentalize their behaviors versus mine. And then you know, their situations, just, I couldn't take it to heart. And it's so easy to do, you know, especially when you're being told all the things they can't do, or the you know, having behavior issues are sent home from school, but I definitely compartmentalize it. And I made sure that my time was a priority. I mean, I wanted a career. And I found a way to do it. It was really, really hard. But my other option was to be on welfare, because this is the way that our government is set up. If you don't, if you want health care for your child, do you have to go to Medicaid or you have to make a ton of money? No. So I kind of tried to find a balance by being self employed. So I could take the time that I needed for myself and for him to get him to therapies and stuff as well.

 

Chad Ratliffe  14:45

What do you say to somebody who says that's impossible? I can hardly like take care of my kid, let alone start a business on top of it. I mean, how does somebody get on that path? Got to

 

Heather  14:56

realize that it is okay for other people to love your children and take care of your child. During and I think that that is is so many parents will say, you know, I can't get a babysitter or I can't do this. But you know, there are respite programs out there each state is different, as I said, but they are available. We have like nanny cams that our house is now. So that can be, you know, very helpful. If they go to school, there are people who can love and care for them there.

 

And I've noticed that a lot of parents don't ask for help, they just assume that nobody's going to help. They just refuse to ask, you know, I had a friend of mine, she said, you know, why don't you ever let me help you watch your son. And I'm like, I don't know why you'd want to, you know, she's like, I love him. And I would love for you to go get your nails done, or take a break or go on a date or do whatever. So I think that we start like self isolating, and a lot of it is self isolation. And in addition to that resources, and not kind of making excuses for, you know, this isn't going to work, we'll try it first, you know, and see if if it does work and give yourself some boundaries and at least attempt to do it.

 

Chad Ratliffe  16:00

So where are you spending most of your time, these days, now that

 

Heather  16:03

my son is placed, I see my son eight days a month, which sounds like it's not a lot, but he's, he's, he's older now. And he has his little day programs that he goes to, but you know, I'm able to kind of catch up with my other kids. So I'm spending a lot of quality time with them, that they miss those first, you know, eight 910 years, I was crisis mommy for a long time. So I'm spending a lot of quality time with my kids working on my business doing the book launch. And you know, just making sure that I'm emotionally available for my other children now, and even like my parents and my friends that you know, dealt with the nervous wreck of me for two decades.

 

Chad Ratliffe  16:41

What are the ages, like how close in age were the kids,

 

Heather  16:46

my brother, they did. So my I have a 24 year old daughter. And then I have a 23 year old my son Noah is 23. And then my little one is 17. So they all grew up in the same house when when Noah was being raised, and then I had Tony, which was my adopted son while I fostered him in and he had to go into another line of care because the state but he was, so he'll be 24 now. So they were all very, very close in age. And you know, then we had to deal with, you know, some puberty issues, and some sexual issues that didn't, aren't quite easy to explain. And it was a lot, you know, but I will say that, you know, Nolan sisters, and for Tony as well, they know they will go to the end of the earth for their brother, I've set up very clear expectations for them. Because they think that we're all very just so worried about what happens when we're not here. So my expectations for my daughters are very clear. You know, it's you will continue to be in their life, you will pick them up, you know, on the holidays, and I don't want them to be alone on Christmas, Easter, any of that you're going to be involved. But you know, I do want them to live their own lives and not have that, that responsibility over them all the time as well. But expectations are there.

 

Chad Ratliffe  18:03

You know, a story I don't bring up very often and you'll understand why is. So I've had Child Welfare Services called on me a number of times, and not just when I was going through a nasty divorce and there was drugs and there was a reason for child welfare services. But because my kids are nonverbal, and if things show up if there's a bruise on them, that somebody can identify where it came from. They call Child Welfare Services. Well, one time they show up and now it's like their sixth visit. So I'm like that guy, right, who is in the system. And my son on his private part. It's all scabbed up and scabbed over. And they are nobody will say it but they're investigating sexual abuse potential. Yeah. Fortunately, when we went to the pediatrician, I'm just sharing, you know, this isn't like the fun stuff to share. I'm

 

Heather  18:58

glad you're sharing because nobody talks about this stuff at all. And it is important and a lot of us have been investigated by DCF sometimes, and just it's a secret, and it shouldn't be because I get it.

 

Chad Ratliffe  19:10

It's really traumatic. I remember when your son, so we went to the doctor, and they had him pull down his pants. And when he doesn't have his onesie in his diaper and all those things kind of keeping he the way he went to grab himself was exactly where the scabs were. And so they had to write a thing that he's going through puberty. And he's hormones. Yeah, they close the case and this and this and that. But you know, while you're getting investigated, they have to pull your other kids out of class to interview them. Yeah. And now they've been pulled out of class six or seven times they're embarrassed as all can be. And you want to say to, to CWS like we have to look out you know, he's nonverbal. Not every kid at school has a bruise if you call Child Welfare Services for everybody who had a bruise at school. Anyway, it's a challenge. situation.

 

Heather  20:02

And it hurts the other children too. Because I mean, I've had DCF called on me a couple times most parents that I've talked to when they admitted it comes out to and you'll be these other siblings. This is their norm, you know, and it it sucks, but it is so then you're having somebody else question them. It's very traumatic. My daughter's speak out a lot about having a special needs brother and how it affected their life in very many positive ways. But you know, some of the things were challenging for them. And we need to give the siblings a platform as well.

 

Chad Ratliffe  20:31

Yeah, I know, the one thing that my kids do have is they have more empathy at a young age than I had when I was 30. I mean, they really have to grow up fast. Yeah. Anyway, so what's next? What's next on your? You seem to go after big things?

 

Heather  20:47

Yeah, I worked on health care reform for a long time when health care reform was happening because of my son. And because of my business, I really want to enact political change. And man, I look at the news and say, Well, maybe not today. But I really think that caregivers need more resources, for sure. And I know that it's available, Medicaid will pay for services for our children, but they won't pay for services for people taking care of them. I think that mental health should be mandatory for anybody receiving Medicaid, because it's not accessible to a lot of people. In addition to that I do I want to advocate and lobby for caregiver pay, that was on the ballot for a long time.

 

And then it got it went geriatric, you know. And, you know, I can see how it didn't get passed. Because, you know, we all were old, we can't, it's just a part of it. But the difference for us is, is you know, people who are senior citizens get to plan those things, our kids and our families don't, a lot of our families live in poverty, and it is just from getting the short stick. So I definitely am going to try to get back in DC and get some bills on the table to get a caregiver program going, I wouldn't have known about the caregiver program that they have already, then unless I married a disabled veteran. And the federal government does pay veteran spouses and families to care for disabled veterans and mental health is mandatory. So that program is already in place.

 

And that is really the reason that I wanted to go besides the support, I wanted to write this book and I wanted to get myself the kind of the cloud to get into into DC and try to make these things happen, because it's already available their programs already in place. But it I think it needs to be a federal bill to our population, because mental health is very, very important. And our lifespans, unfortunately, are shortens because of stress. It shouldn't be this hard.

 

Chad Ratliffe  22:44

It's amazing. The caregiver wage is not enough. I can't you know, I do have respite hours that are available to me, but I can't get anybody to work for the pay that they're willing to pay.

 

Heather  22:57

Yeah. And so each state is different in Florida, they won't pay the parent at all I know in California, do they pay the parent? They will.

 

Chad Ratliffe  23:03

But I mean, even the caregiver, like you know, it's almost minimum wage.

 

Heather  23:07

Yeah. So yeah, I mean, then you have like rural Kentucky or West Virginia, there's just there's just the services, I think should be the same across the board. I do understand health care very well, and how it's funded. And there are funds available, we just need to put more focus on our families, for sure. And

 

Chad Ratliffe  23:24

I appreciate all you're doing the book, we're gonna put it in the show notes, I'm going to get a copy of it and check it out. And thank you for you know, being a voice who has taken quite a few steps on this journey. For the parent that is just got the diagnosis and says, sees no light in sight, doesn't think they're going to be able to pull this off. What do you say to them,

 

Heather  23:46

um, one something I said to another mom the other day, and she looked at me like I was crazy. And I'm, I'm just gonna say it again. Anyways, taking care of yourself as priority, your child will still be disabled tomorrow. And she was very offended when I said that. But she called later as I get it now, you know, I think that we're just so in panic mode all the time.

 

And we're just we're not giving ourselves time to breathe in grief. You know, we have to kind of grieve that our life does not look like we thought it was gonna look like you know, this is not our dream of parenthood, and it sucks. And it's okay to say it sucks. And it's okay to be yourself. And it's okay to go to the mall or go hang out with friends or do whatever, you just got to get the supports in place very early, so that you can do that.

 

Chad Ratliffe  24:32

Heather, thanks for telling it like it is and taking the time to be on the show and share. Share your journey. I really appreciate it.

 

Heather  24:40

Thank you. You too. All right.

 

Chad Ratliffe  24:42

We'll be in touch right thanks. Bye bye.