Wednesday, April 17, 2024

Episode #76: Special Needs Sibling Relationships and Disability Awareness

https://youtu.be/10JHunH5Tpg
Balancing the Needs of Every Child
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Balancing the Needs of Every Child

Show Notes:

In this insightful episode, join us as we delve into the complexities of special needs sibling relationships and the challenges of growing up with disabilities. Our guest, Melissa Ortiz, opens up about her personal experiences as a person with a disability and the dynamics she faced with her sister. From childhood memories to adult understanding, Melissa shares candidly about the trials and triumphs that shaped their relationship. She provides valuable advice for parents striving to strike a balance between their non-disabled and disabled children, emphasizing the importance of communication, age-appropriate explanations, and fostering mutual respect. Melissa also discusses her passion for advocacy and her efforts at ABLE Americans, a resource hub aimed at connecting families and providing vital information. Join us for an enlightening conversation that sheds light on the power of support, understanding, and unity within families facing the challenges of disability.

Melissa has been a guest on earlier episodes. To hear her story of growing up with Spina Bifida, check out Episode 72. To learn more about her work with ABLE Americans, be sure to listen to Episode 74.

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Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/


Meet Today’s Guest:

Melissa Ortiz serves the National Center for Public Policy Research as the organization’s Senior Advisor for the Able Americans Project.

In her role, she develops the project’s strategic plan, marshals key resources and helps oversee the implementation of the project. She also assists the National Center’s president in identifying necessary contractors, employees, strategic partners, stakeholders and donors and serves as a key spokesperson.

Melissa identifies as a “happy warrior” and is enthusiastic about driving a dialogue between people living with disabilities or chronic illness and policy makers across the political spectrum, especially conservatives. She has worked in the classroom in Nashville, Tennessee and in the nonprofit sector in New York City and Washington, DC. She was honored to serve as President Trump’s Commissioner of the Administration on Disabilities. The first female board member of The Conservative Caucus, one of the oldest conservative groups in existence, she currently resides in Washington, D.C. with her husband Tony and Service Dog Dachshund, Annie Oakley.


Episode #76: Special Needs Sibling Relationships and Disability Awareness

Balancing the Needs of Every Child

(Recorded June 22, 2023)

Full Transcript of Interview:

Tonya: So Melissa, welcome back to Water Prairie.

Melissa: Thanks. It’s good to be back.

I always enjoy talking to you. Yeah. As, as you know, if you’ve been following the podcast this season, we’ve been asking each of our guests to bring in some facts or pseudo facts about themselves to have you as a listener guess which are true and which are false.

And so Melissa has been a really good, um, um, companion with this because she’s been willing to bring in different ones for every episode that she’s in. So. We’ve tested her with her truths and her lies along the way. But today she has another set for us to try to guess with. So, Melissa, what are your facts for today?

I was once Miss Teen USA, the very first person to ever compete on crutches. And I love completing crossword puzzles in ink. And I’m an avid reader.

All right, so the crossword puzzles in ink. Even my dad wouldn’t do that. My dad was an avid crossword puzzler. So I am really impressed if that ends up being a truth. But we’ll see. Listeners, go and guess. Put it in the comments if you’re on the YouTube channel. And if you’re not, then check out Instagram and Twitter. Find the post and post your guesses there. And we’ll see which of you are able to guess the correct one.

So Melissa, today we’re talking about disability issues. It’s something that the podcast is about anyway. But specifically, I wanted to find out your experiences growing up in a family and some advice that you may have for parents who have more than one child.

I have one sister and she is almost 10 years older than I. My mother was married and had my sister and that marriage ended in divorce because of domestic violence. Then, my mother came home to live with her parents. And try to figure out how to put her life back together. And literally physically ran into her high school sweetheart. In the hardware store, 3 or 4 days after coming home. And… Less than a year later, they got married. And, then, you know, that is, they tried for five years to have a baby.

And, I, um, I didn’t show up until they had been married almost, um, Well, no, they had been married for five, they’d been married not quite five years when I showed up. And then, um, my dad died when I was five. So, here’s my sister who, um, for her Almost 10 years has been the princess on the satin pillow, the only child, very athletic. She was a horsewoman, still is a horsewoman. She was the youngest person ever invited to join the Atlanta ballet as a professional dancer. She had to choose between that horses because they do different things to your muscles and she chose the horses right when she was having to make that decision about did she wanted to pursue ballet full time or she want to ride horses and she said she wanted to ride horses.

She, my sister is also Um, we joke about her being the brightest bulb on the Christmas tree because she is brilliant in math and science, especially, and I, um, I can’t imagine what it must have been like for her to, you know, go through this situation with her, her dad. Then my mom marries her high school sweetheart who adored my sister and treated her as his own.

And then mom gets pregnant. doesn’t know immediately she’s pregnant, she’s sick for the entire pregnancy, and has to go to bed for a big chunk of the pregnancy, and then I was born two months early through a caesarean section, that they didn’t know if either one of us were going to live through. We both did, um, spoiler alert.

I think that I would be pretty resentful of the little upstart they brought home to. Because I was underweight, um, they weren’t prepared for me to be born, and my dad’s not a shopper, so my first bassinet was a turkey box. And, you know, my sister, and, and all of a sudden, the whole world revolved around, well, does Melissa’s diaper need to be changed?

Does Melissa need to be rolled over? Does Melissa need to be fed? Oh wait, mom can’t pick Melissa up because mom can’t lift anything heavier than a fork for six weeks after the birth. And so you have all these things.

I, I, I didn’t really understand until I got older and I began to look at other families who had a child with a disability because I was the child with a disability and I couldn’t wrap my head around it from her perspective. And then when I began to see her perspective, I thought, Oh my gosh, I think I would have put me on the back of my, of the bike and driven off somewhere and just left me somewhere to fend for myself.

Um, I was a brat. I just, not that I was undisciplined, but I was needy and I was pretty whiny about those needs. And there’s some who would say that a whole lot hasn’t changed, but they don’t know. They don’t know. And my sister is also very independent, just like I am.

My sister is much more reserved and much more analytical about, um, participating in anything before she jumps in, whereas I, um, tend to leap and then look very quickly behind me to see if the parachute has come out of the bag. And my sister didn’t understand things that I went through, um, until she, gosh, I don’t remember how long ago this was, about 25 years ago, she broke her femur and, in a, in a horse riding accident and, um, broke some ribs and that sort of thing.

And she called me three days after the accident and she said, I’m so sorry. I had no idea. I didn’t know that this is what you went through. And my immediate question was, and how much morphine do they have you on? Because that was so unlike her. Then, um, as in the last year since my mother has lived with her, um, we’ve become better friends, and I actually feel like for the first time in my life, I truly have a sister, and so that’s been a good thing, but it’s very difficult for both the child or children with disabilities and the non disabled children, and one of the biggest things that I would suggest, um, not to create a divide within the family, and my Kindle turned and went to sleep mode on me here, so let me pull it back up, not to create a divide within the family, but I think that Because it is so, anytime you have somebody, whether it’s a parent or a child with a disability, the family dynamic revolves around the neediest child.

I think, I don’t, I don’t remember who said it, but there’s a piece of parenting advice out there for mothers that says, or parenting, a parenting adage that says, you’re only as happy as your happiest child. I don’t know who said that, I think it was Irma Bombeck, and there’s truth to that. But, you know, whoever your neediest child is, is what the family dynamic revolves around.

Uh, for my husband, it was his sister because she was the oldest and she was the oldest cousin and she was the prima donna. And, and so unfortunately he likes to be alone a lot. So he said, I was very satisfied with not being in the spotlight, but it would have been nice if my ideas had been listened to every once in a while.

So I would say this to parents, schedule some activities to, to, to, Accommodate and be just for the kids who are able bodied if they want to go ziplining take them ziplining The way that other families in your social circle and your church can help is Offer a day of respite to the parents and say let me take your child with a disability over my house We’ve got a pool.

We’ll get in on the float We’ll do or we’ll do something that this child likes so that y’all can go and And be a, and I’m going to use the air quotes, normal family and do something that the rest of you want to do. And I just think I’ve seen that work so well in so many situations and it creates, it’s like a pressure valve release for everybody of, oh, our life isn’t forever going to revolve around this.

And, oh, we can still do things as a family that don’t include having to make accommodations for Harry or Sally, for lack of choosing two better names.

So with family dynamics, Um, whenever one child has a disability and their sibling doesn’t, how do you think that impacts a family?

Everything revolves around that child with a disability.

In the same way that if you have a child who’s a standout athlete and the other child is not, everything revolves around that child who’s the standout athlete. The And I, and I’ve always wanted to, there’s a mom in the NFL who has three sons who are all in the NFL. I think Gronk is one of the nicknames, it’s a shortened name of Gronski or something like that.

I’ve got to look that up. But people have asked her, how was it, what was it like having three standout football sons? She said, it was great because I only had to be in one place until they all went to different NFL teams. And then it was really upsetting because I was juggling, but it’s the same thing.

Um, with, when you have a child with a disability, you have to make time for the non disabled child and things that that, that, that child wants to do that don’t include the disabled child. And the non disabled child also has to make time for that sibling who has a disability of, okay, so these are the things that we’re going to do because to do otherwise creates resentment.

I saw it in my own home. I, I’ve seen it in countless other homes. Um, and. I had a, an experience that I will treasure for the rest of my life. When I was, my very first work trip when I was the Commissioner of the Administration on Disabilities, um, in 2017 was to a big conference and there was a sibling, a special breakout session for adult siblings of people with disabilities.

And I went because I wanted to hear what they had to say. And I told them, I said, I’m here. But I want you to feel free to let this be what you need it to be. I’m just here. And, and just to hear what they had to say and some of the pain and some of the the feeling invisible and some of the, you know, the different things that they all felt and they all were in agreement with each other and it wasn’t a, um, it wasn’t a gripe session.

It was, this is where I struggle and then you would say me too you would see me too around the circle go up and then I began to just sob as I sat in the corner of the room and I said we’ve done you a disservice because it’s been all about making sure you’re not your disabled sibling was included in things and you needed your own stuff and I said Is there anything, I said, let’s pretend that I am your disabled sibling.

Is there anything that you need to say to me to get it off your chest, so that you don’t take it out on your disabled sibling? And it came at me. And I heard, recently even, from one of the people that participated in that group, she said, I had to track you down on social media. And she said, I just wanted to say, thank you.

Because my second parent had died the week before I came to the conference and I was now solely responsible for a very low functioning sister with, um, with a developmental disability. And she said, I, I was angry and I just needed to tell somebody that. And the fact that you sat there and let me say that to you as if you were my sister cleaned my heart in a way that I was able to go back and love her in a way that I don’t think I would’ve been able to. So there’s gotta be a safe place for the letting off of pressure.

Yeah. I know with my kids, um, they had different types of disabilities. So my daughter was, was visual impaired from almost day one. It was, it was obvious there was something that she needed help with.

So we had the early intervention, we had all the extra help there. And then Christopher came along a couple years later and, um, and for all points and purposes seemed to be developing, typically. Some, some speech delays, but, but those were being addressed along the way. And, um, and so he took the back seat a lot of times whenever she was going through stressful situations.

But as he got older and it became more obvious that he had learning disabilities, that he had things that were invisible, and he was still taking that back seat, we started working on trying to make sure that we got him where he needed to be. To have that time and so we weren’t the parents who had them go together to everything They they had a lot of similar interest when they were young which helped me as a parent Because they both could go to karate together.

They both could do swim together. There were things like that And even with Emily being involved with the miracle league, they let Christopher come in early and be a buddy for her So they did that still together But we didn’t make him go to her dance things We didn’t make her go to his baseball thing, so they kind of had their space and we realized pretty early on that that was a healthy thing to do so that they could have that time with us, but it does take some coordination as a parent, especially if the income isn’t there to be able to pay for a babysitter or some type of activity for the other child to be a great way to offer them. support and help for that family. Um, or single parents who have more than one child. Can you, can you partner with them and maybe help that, that sibling? Or, or help the child who has extra needs? Take them for a while and let the parent go, you know, whichever way on that.

Um, so yeah, so I think for all different reasons, as parents we feel That juggling situation happens all the time. I want to go back though and ask you a little bit. Um, with your sister, so you said there’s a 10 year age difference between you. Um, and your sister more than you even went through some younger traumas between the, you know, losing, losing biological dad being part of her life.

But then also going through adjusting to a new dad. And then. Ultimately losing him as well, um, at, at some crucial ages for a young girl. So, so she had, aside from having a sibling that she may or may not have enjoyed that much. I’m just thinking she, she, she had a rough childhood.

She did.

Coming through those years.

She did.

Um, really impressed to have heard that she was equally skilled in ballet and in horseback riding. That’s pretty impressive.

She’s still pretty impressive. She, she’s. She is, um, let’s see, I’m 57, which means that she’ll be, oh wow, 67 in October. And, and so this, so, and she has a horse farm and she cleans out stalls every day.

She, um, gets on angry horses every day and, and she stands in the hot sun every day teaching kids. But she, she’s the strongest person I know. Because she has had trauma. And, you know, whereas I’ve had trauma for other reasons. She’s had trauma that. I am in awe of the things that she has been able to do with her life.

Right. So when you were, so when you were a baby, I know, I know you had, because you shared in the last episode about, um, some of the medical things that you had and, and some of those are crucial times during your life as well.

Um, but did you have the typical sibling I mean, are there times when you can look back when you were children in the home together? Because that wouldn’t have been for that many years, because she would have been leaving. Especially getting married at 17. You didn’t have many years where you would have really remembered it, but did you have family time together that, that you’re able to look back and remember? You know, some, some, some pleasant things that, that interchange between you with, with, with, with the ten year gap.

Oh, yeah. I mean, it was different. Um, and I know that she was forced into babysitting a lot. And that that was yet another, another…

And that’s something I would say to parents, don’t force your kids to babysit their disabled sibling unless they’re completely comfortable with it. Period. Full stop.

This is a sibling thing that’s hilarious. We had this low retaining wall at the end of our driveway from where they closed in the garage to make a den, and, um, she used to sit me on the wall like a little statue and then she would practice jumping over me. And that’s such a thing that siblings would do to each other. And I loved that she did that because it let me know that she saw me as a person and not just some little crippled girl. Before everybody jumps all over me for using the “C” word, that’s what we called it back then. I remember that and then different memories through the years of her being very protective of me. Um, she, I will never forget being at a shopping center and they sold me the wrong kind of film for the camera that I had. And she looked at me and she said, did you show them the camera?

And I said, yes. And she, I think I was maybe 15 at this point. And she slammed the door. She jumped out and slammed the door of the car and goes striding back into the camera shop with the film in one hand and the camera in the other. And I see her yelling at the guy behind the counter. And, um, there was like some sort of difference in the amount that the film cost.

And she was like, I’m not paying it, just give me the film. And so, and, and you see, and I see this woman behind her go, And handing her the difference in the money and um, You know, so I know that while there was deep resentment there, and, and, and, and, you know, and, not hatred. I don’t think it’s really that.

Maybe it was. I don’t know. We have not gotten that far since we’ve gotten to know each other as adults. We’ve never gone down that road. And, she said recently to me, she said, you know, I realize now that you have a strong survival instinct. And so much of what used to irritate me about you was simply you trying to navigate your way through life.

And that I felt like somebody had given me a sack of gold coins when she said that, because I felt seen and I needed to, I needed to feel like she understood what I, what I was trying to accomplish. And I cannot imagine. Going through some of the things that she went through and living through them. So I have enormous respect for what she has accomplished. So.

Right. So as adults, you have a good relationship now. And this is exciting to hear, too.

Just within the last year. I mean, we’re old and it’s time.

I know my kids, I mean, they’re both in college now. They’re starting their adult lives. They have different memories of different time periods. And I think that part, I don’t know that we can fix as parents. We can try and give them as much balance as we can, but what they internally view a situation as, that part, I don’t know that we can control that, because that’s going to be based on their interpretation, their emotion at the moment.

What, you know, because, because they don’t even understand always why we do certain things, depending on the age.

No, and, and, and, and that’s, whatever it is, it’s going to stick.

Right, but I will say that my kids are diehard loyal supporters of each other. And, um, and, and that came over time because Christopher was born into the situation of being a sibling of someone that needed help.

Emily became that protector of him as it became more obvious that he needed some support and he needed kind of a cushion around him every now and then, especially when he was young and having even teachers abusing him, just, just emotionally. Um, with, with, with, with ridiculing.

Um, but they were a good support for each other and they have a closeness now as young adults because they, they walked through that together, but they were also much closer in age than you and your sister were. So that, and, and I never knew being boy and girl, if they would have that connection or not.

My prayer has always been that as adults, they’ll be friends. I feel that that. That is going to be the case because I see them now at an age where they should be totally opposites of each other, and their friends are very different, their personalities are very different, but they do, um, Migrate to each other to help each other if there’s anything they they text each other first if there’s a question or if they need support before they even text us sometimes.

Oh, that’s great Um, that’s the way that my husband and his sister are they are only five years apart and They are closer in age much closer in age very different home situation much more tranquil much more. Um, settled both parents Lived through their growing up years One of the things that was hard for me and my sister too is that my mother got into, there’s a, it’s, they call them the fundamentalists and it’s the Institute and Basic Life Principles, IBLP, or the ITA, Individual Training Academy, Institute Training Academy, something like that, that’s our ATI, ITA, something like that, um, that’s a homeschool thing and it’s very legalistic and My mother held up my sister.

My sister was pretty rebellious because I think of all the trauma and she was always held up to me as an example of who I didn’t want to be. And so it wasn’t until I left home and started college that I began to unpack all of those things and realize that mom, unintentionally put a major wedge in our relationship and our view of each other because my sister said I always thought you were the golden child and I said well that’s funny because My mother’s parents always portrayed you to me as the golden child because you came right home and did your chores and did your homework before you played and you were just little Miss Industrious.

And I came home and took a nap and watched TV for an hour before I started doing my homework because I just simply needed to rest. And that wasn’t understood.

So, um, so for family, so we’ve, we’ve talked a little bit about, about the childhood part and how you very connected with your, your sister now. But through that, and through families that, that you’ve interacted with as well, beyond, beyond your own family, um, what advice would you give to families that are struggling to try to keep that healthy balance between their non disabled and their disabled children?

Make sure that everybody has consequences for bad behavior. If they can’t be the same consequences for everybody, and sometimes children with a disability can’t have the same behaviors that your non disabled child has, you cannot expect… child who has autism not to vocalize and not to not to respond in the ways that their body responds to things but you can expect them to be you know to have manners and to behave and thing and I just think that there always need to be constant that the behavioral expectations need to be attainable and that they need to be clear And that there has to be some way of getting the child to communicate, all the children, disabled or not, to communicate back that they understand what is and is not appropriate.

Um, one of the most, and, or, you know, and, and to know what the child’s limitations are. And to, and to, While not judging the non disabled child by the same standard, just making sure that it’s, there’s an understanding of what is expected and that the playing field is level on expectations and consequences for not, for not behaving.

So… There has, there have to be limits. There have to be consequences. Nobody gets a free pass because they have a disability. That’s the worst thing that can happen.

I know for my kids, um, my daughter had an extreme fear of closed doors. So putting her in her room was a, would be a traumatic discipline for her. So separating her around the corner where she could still hear us was what she needed. So. There were different things. My son… You could isolate him all you wanted to.

His toes were going to become toys. There was just not really a lot that you could do. He would even ask you what the value of a punishment was before he’d decide whether he was going to break the rules or not. It was just…

I like this kid. I can’t wait to meet him. He is my kind of kid.

So the, um, but we knew, um, like the, we didn’t always put the children in timeout.

Sometimes we put the offending item in timeout. So the top of our fridge, a lot of toys were in timeout on top of our fridge for a long time. To the point where sometimes we’d find something up there and we couldn’t even remember how long ago it was put up there. Because we’d forgotten we even had it.

Exactly. And I, that’s a great way to do things. I think that a good parent when they’re at a loss will seek out other parents in similar situations. Yes. And this is another reason why I feel like what I’m doing at ABLE Americans is so critical to develop a resource bank so that there can even be an online message board or support group.

If you’re not in the same town, if you can at least get on Zoom and talk to each other and at least communicate that way, there’s a great value in shared experience and in the resource of, like, In talking to Johnny about how to handle the um, how to handle the radiation table, I, I don’t know what I would have done without her advice because I knew what needed to be done but I didn’t know how to ask for it and I was so beaten down and so exhausted from being so sick that I had forgotten how to advocate for myself in a way that was appropriate because there is appropriate advocacy and then there is. I want my way, dadgummit, and I’m going to just pretend that it’s about my disability when it has nothing to do with that. I just want my way.

When there are benefits, um, you know, even through the podcast, we’ve featured, um, groups like the ARC, um, the Miracle League programs, um, whether it’s a recreational group or a support group that you’re going to find, you’re going to find other parents that are in the similar path that you are at those locations.

And that’s where, as Melissa is saying, you’re going to find, um, those peers that you need that understand beyond parenting to children, beyond parenting, you know, typically developing sibling rivalries and everything else that happens. You’re also looking at how, how do you distinguish and helping to encourage positive growth in all of your children with this.

And so other parents in those groups are going to have the same questions, but some of them will be ahead of you and may have some solutions that they found that, that are working.

The thing that you have to remember about children with disabilities is that they are not their diagnosis.

They are first your beloved child. And as long as that is kept in mind, everything’s going to be okay. It may take a while to get there, but everything is going to be okay. If you keep in mind, you know, how, what would you want done for your non disabled child? Well, then do that for your disabled child.

How do you think parents can help their typically developing child understand and accept what their child with a disability has going on? Like, to maybe help foster that relationship between the children.

Hmm. Well, again, uh, and you have to know about me that I love the show Big Bang Theory. Okay. Uh, it’s, it’s, um, because I, uh, there’s this character, Sheldon, and he is level one. And he, each of the principle six characters in the show five of the six have something that makes them an oddball and the sixth one is a beautiful blue eyed blonde actress and wannabe and then she works at the Cheesecake Factory and one day Um, Sheldon’s roommate was talking about, why does he act this way?

Why is he this way? And, you know, and, and she rips around and she looks at him and she said, because the brain of his, the part of his brain that tells him how to act has a wedgie in it. And just, you know, and then it was funny, but it was a great explanation. And and I think that if parents can just be very, they don’t have to be overly technical.

They don’t have to be overly medical. They don’t even have to give too much information. Just give enough information to answer the child’s question. I equate it a lot like sex ed. Age appropriate. Um, what, what do they really need to know to understand the situation? Um, it may be Melissa’s legs don’t work like your legs.

I think that it depends on the child. I think you need to be very realistic and not scare the, the typically developing child to death, but help them, you know, be frank, be absolutely frank and say, this is the reality of this situation.

I’m going to ask you not to share this information with your sister or brother, that you know this, don’t use it as leverage, but you need to understand this about your sister or brother. Um, and I had friends who were more like siblings, and I had one friend who was just determined that I was going to learn how to walk.

And she was a freshman in high school, the year I was a senior, and sent me down a flight of steps because it was just beyond her why I could not concentrate hard enough to do it. You know, and she wasn’t, she was brilliant. She um, got a degree in chemical engineering and worked at DuPont. But she loved me enough that she wanted me to have the same experience as she was having.

I think that every sibling needs to know that it’s not up to them to create those experiences. And that it’s not up to them to fix their sibling, explain their sibling, but it is up to them to be a good sibling to their sibling to the best that they’re able. How would you want to be treated if this were you?

Oh, well, I wouldn’t want anybody to pick on me. Then don’t let anybody pick on your brother or sister. Right. Um. Right. And it, you know, and I keep going back to, um, it was perfectly fine for my sister to sit me on the wall and pretend to jump over me, but the moment that somebody in the neighborhood took out after me, oh, no, no, no, no, no, no, no, no, no, no, that was not going to happen.

And because my sister’s oldest child is only eight years younger than I, it was more like having a little sister. Right. And she was the same way. She could be obnoxious and gets frustrated with me. But heaven help anybody that ever made fun of me or laughed at me or anything like that. Uh, because my niece was a basketball and volleyball player and she was a softball player.

She was very scrappy. And she’d just flat take you out. No questions asked. And, you know, you just didn’t miss, mess with Aunt Melissa. She didn’t call me Aunt Melissa. She’s called me Melissa because our ages were so close. But I think it has to be, it’s be age appropriate. Again, going back to the, um, the sex ed.

Be age appropriate. Don’t give them more information than they ask for. Explain it in the simplest terms. And then be willing to answer follow up questions. To be frank. To be, you know, not, Put the child off of, oh, we’ll talk about it later. Because there may be, and then ask, is there a reason that you wanted to know?

Because somebody may have made fun of the sibling at school or out in the neighborhood and The, in the typically developing sibling may not have known how to handle that or how to address it. They may have been asked, what’s wrong with your sister? What’s wrong with your brother? And they may not have known how to answer that, so that may be why they’re asking.

I think it’s always important to get some context on why that information is needed. But to never not give it. To give it in the most, um, in the most generic and simplest, easiest understood terms. That’s what I was trying to say. Easiest understood terms.

Good answer. I like that. Alright, so Melissa, if anyone wants to get in touch with you, um, what’s the best way to get in touch with you?

I’m very easy to find. I am, um, Melissa Durham Ortiz on Facebook. My email is mortiz@nationalcenter.org and my personal email and my work email are very similar, so I had to think about it for a second, and then my Twitter and Instagram handles are @dcbelleonwheels. And that’s how you find me. I answer inquiries, um, I’m happy to talk to people by messenger, I’m happy to receive emails.

Um, in fact, that is the preferred way to get in touch with me, is by messenger or

email. All right. Excellent. Um, and do you have any special projects you want to talk, talk about? Um. Well, the, um, the resource, do you want, um, information?

We are. Yes, um, if you have special resources that you know about in your area, please tell me about them through an email because we are building an app.

One day we hope to have more than just a webpage with all the resources, but we hope to have an app so that all you have to do is put the diagnosis, the need, and your zip code in and everything within 100 miles will pop up. I’m also pulling together a presentation for four governors.

They shall not be named at this time that I’m going to go and talk to you about Medicaid portability. If you, if you are on Medicaid, you understand this all too well, but many Policymakers and lawmakers do not understand that Medicaid is not portable between states. And that creates a lack of opportunity for many, many people who have chronic illness, medical fragility, either themselves personally or they have somebody in their family that’s dependent on Medicaid to help cover the expenses of their disability.

So I am putting together a pilot program that I’m hoping these four particular governors will endorse and it will become eventually… Practice of the land.

Melissa, thank you for, um, for spending some more time with me today, and I look forward to the next time we have you back again, but, but thank you for sharing just your personal experiences with having a sibling and just even the good and the bad that you’ve gone through. And um, it was exciting to the future together as, as friends and sisters now, but thank you.

Thank you.

Tonya Wollum

Tonya

Tonya Wollum is a disability advocate and host of the Water Prairie Chronicles podcast which connects special needs parents with resources to help them navigate parenting a child with a disability. She is the mother of 2 college-age children who have each grown up with a disability. That experience, along with a background in education, led her to create the Water Prairie Chronicles to help share what she has learned with parents of younger children to help them know how to advocate for their children.

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