"You Can't Have A Zoom Class With Special Needs Kids"

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Call 866-WINASIA or to see chickens and other animals to donate, go to CritterCampaign.org. Welcome back to Hope for the Caregiver. I am Peter Rosenberger. This is the show for you as a family caregiver. How are you feeling?

How are you doing? He knows the plans that he has for you. That's my wife, Gracie, off of her CD, Resilient. If you want to copy that, go out to Hopeforthecaregiver.com and whatever's on your heart. There's a donate button there. It goes to this work that we're doing, and it's a tax-deductible gift. Whatever's on your heart, we'll send you a copy of her CD.

It's a very good CD. 877-655-6755. And John, I've got actually one of my all-time favorite people in the whole world on the phone. It's my cousin. She's been on the show before.

It's been some years. Her name is Meredith, and I just love her to pieces. She's one of the funniest ladies I know. Your mom has gotten funnier, but your dad was really funny. He was very funny.

He was a very funny man, and up to the very end, he was still cracking jokes, and I love that about him. But Meredith is the mom of a special needs child, and she has certainly embroiled herself in the world of a caregiver. Is that a good word for you, Meredith? Is that a good way of describing it? That is.

I would agree. I want you to tell us a little bit about your journey as a caregiver and your daughter, Emma Kate, and then we're going to talk a little bit about something that's incredibly pressing right now for families, particularly families of special needs children. So give us a little bit of backstory on that. Well, my husband and I have been married for quite a number of years, I guess 23 years now, and we have three awesome kids. And we had a great plan. We were going to have our kids two years apart, and we had it all planned out. And we had two boys, and they were perfectly healthy and off now and actually in college. They're 20 and 18 now, and then we had our daughter, and she was two years apart too.

She's 16, but she was not according to our plan. She was born with all kinds of brain malformations. They were just congenital. How God chose to design her sweet brain, and she has global malformations in her brain. So that means that she has all kinds of delays.

They're not really delays at this point. They're just things that will never develop for her. She is wheelchair bound. She's diapered. She's unable to pick up anything and hold it. You can put something in her hand, but she can't remember it's there. And so she knocks things off, but she's articulate, which is our blessing. She is probably, I would say, cognitively maybe a four year old around there, but physically she's less than a six month old. She's pretty much, if you can, your kid can do it at four months and they can possibly do it, but that's not even a guarantee. Did they tell you guys that she would never speak?

They did. They told us when she got diagnosed, she was four months old, and we got her diagnosis. I had been pushing for months. I knew something was wrong. She was my third child. She didn't develop normally. She cried all the time.

I'm not exaggerating. It was rough. And so actually your parents were very kind to me during that time because we lived in Spartanburg, South Carolina, and your parents were in Anderson, South Carolina.

So we saw them a good bit and they were incredibly encouraging to me and Barry and my kids through that experience of getting a diagnosis. But they told us she would never sit up. She would never talk.

She would never do pretty much anything. They told us to take her home and love her and that she would live to be about three. And so when we moved to Georgia, she was almost two. So we moved to Georgia planning essentially to bury a child. And that was not something anyone should have to kind of have in your brain, but especially your two year old.

But God saw differently. She is 16. She has lots of struggles.

She has seizures are probably her biggest struggle. But I mean, she's legally blind and she has all kinds of issues. But she's funny. She is witty. She is sarcastic. She's rude. But she has a lot of 16 year old characteristics. Basically, she's a lot like your dad. I mean, I'm telling you in my middle. She's defiant.

I mean, but she's she has quite a personality. I remember the day they gave me her diagnosis. I was my husband was in residency at the time. He's a physician. He was in residency.

I was by myself. I had all three kids. And the neurologist came in and he said, you know, I've got a lot of bad news, but I have a little bit of good news.

What do you want first? I said, well, give me all the bad news. So he did. And he said, but I got a really neat little good news. And I thought, I mean, after all he had just said, I'm thinking there's no way there's anything good here.

And so, I mean, I'm in shock and, you know, processing. And he said, the only part of her brain that looks at all normal, like at all, like just a little bit is her personality center. And by goodness, that is the truth.

The child has a ton of personality and we are so thankful. But she knows us. She knows, you know, what she wants, what she doesn't want. She can tell you what she wants. She can tell you when she's tired.

She can tell you, she can't tell you what hurts, but she can tell you that she hurts. So I'm blessed. But it's a long road. It's a hard road. It's a lonely road being a parent of a child that requires that much care.

It's a very isolating place, but it's got a lot of beauty. And my kids are really cool. They're really cool men. They are. Yeah, they're not boys. They are men, aren't they?

No, they are. They were men and helpful. And my middle child, my dad made over, which is so cool to get to see him. Oh, no kidding. Every time you post a picture of him, I'm like, oh my gosh, that's my Uncle Lee.

It is. And he's witty like my dad and funny like my dad. But he also has the most tender spirit.

And so he wants he's in college to become a nurse and he wants to he just he's been a nurse to his sister essentially for his whole life. And he knows no different. And he he doesn't have any resentment towards that role. He has embraced it.

He is kind. He actually is applying for a job to be her caretaker. We have a like a waiver kind of program here in Georgia that kind of allows you to employ somebody.

They can't employ family full time, but they're allowing him to work for a short time because my caregiver that helps me occasionally, she's actually pregnant. And so she's going to be out here in a couple of weeks. And so I needed somebody just for a short time. And I asked him, I said, look, is there any way I can let my middle child?

And they said, absolutely, because it's it's a short term thing. But he's just a neat guy. Neat guy is. And, you know, and that says a lot about you and Barry is that you've you've raised because caregiving is a is a family dynamic. And and and you and your family have have certainly been you've you've you've born it. And I've you and I have talked about this. Now, I will say this.

You did. Meredith did get to get away one time in a not too distant past and have a little time with some girlfriends of hers, John. And she flew out here to Montana. And so I went to go meet her at the airport just because I had seen my cousin. And I go out there and all these 40 something year old women come off the plane at noon. Meredith was the only one that was able to drive, if you know what I mean. Oh, fabulous lady. Here in Bozeman, Montana. But they get off the plane and a couple of yelling out here because my cousin Meredith, who is just I just adore.

I've known her my whole life or her whole life. And and she gets all these these women around her yelling out. Where are cowboys at? Where are they at? You know, I don't know.

Who are these people? Is Meredith the mom friend? Is that the mom friend? I've always been the caretaker of my friends.

So I am the mom friend. I kind of needed it that day, didn't they, Meredith? But I was so grateful that you were able to get away and have that experience. And and you and Barry have been very good about that sort of thing of patient yourself, because I know it's been hard.

But now that brings me to why I had you on today. We're dealing with because we're in such uncharted territory of the COVID-19. You can't take Emma Kate to school. I mean, she can't go to school. She has been out since mid-March. That has been, I was telling a friend of mine who also has a special needs child and she's feeling very overwhelmed and I was trying to encourage her. But it's very hard sometimes to find encouragement when you've been home. We've been home for, I want to say it's one hundred and fifty five days.

But who's counting? It's actually my oldest. That's kind of funny. But I'm like, I think you need to go back to college.

But we've been home one hundred and fifty five days. You know, if you're a caregiver, it is already an isolating role. You were home a lot. You have to bow out of a lot of invitations or a lot of things that your friends or your peers are doing. You have to kind of think, I don't have childcare for that or that my daughter can't physically I can't get a wheelchair into where you are going to do or whatever. You have a lot of things that you kind of have to bow out of. But being, I guess, home for as long as we've been home since mid-March and not having that outlet of school, because that's that's kind of a great outlet for me to get housework done or I spend a little time having coffee with a friend or take a class at my church or just whatever is kind of good for me to do.

I don't have that opportunity right now. And at first I was a little resentful, not going to lie. But, you know, God has really kind of calmed my heart about that. But encouraging others, it's been a hard place.

We've been our school is going back in September and that's their goal is September 8th to start back and they keep pressuring me to give them an answer. And I'll be honest, I don't I don't quite know what to do with my daughter. School is a great outlet for her and it's a great outlet for me. But also I have to think of her safety. And there's no there's no guarantee that she would be OK with it.

There's no guarantee she wouldn't. But I know that God is sovereign regardless. And it's going to, you know, I'll figure it out and God will lead me very clearly. And I feel like he's he's doing that. But being home, it has isolated me even more during this time. And I think special needs parents are very much feeling. I mean, we're just it's a lonely place to be right now. You know, as the world has so much chaos.

We see the chaos, but we really more than anything, we just see the four walls of our house. And that sounds very silly to say, but that's how it feels. No, it doesn't sound silly to say at all. And it's, you know, in the school, the school can reach out and they can do with some things that you can't have. And I'm very blunt, as Peter knows.

I'm so sorry. But you can't have a Zoom call with a class of retarded kids. I mean, you can't. It's not a very and they try and they work hard to do it. And they are teachers are phenomenal. We actually live in Carrollton where we live because our teachers are so fantastic where we are. We interviewed school systems along with Barry interviewing for jobs because we wanted a school system that we felt great about because Emma will be in school until she turns 22.

And so we love our school system. But it's a hard thing. You can't virtually teach kids that are impaired.

She can't see it because she doesn't. I was talking to Richard about this. My brother. I was talking to my brother Richard about this, and I know that he and Kim and you guys have have spent a lot of time together because they have a special needs daughter as well.

She's 32 today, as a matter of fact. But it's, you know, and they kind of served as a real source of encouragement to you guys. But now you're doing that for other people.

It's really amazing to watch how that just keeps the torch keeps it in the past. But he said special needs as hard as it is for families of school age kids right now, which it is very hard. And I'm going to have Richard on the show. We're going to talk about that because he's heading up a new virtual education program. I don't know if I told you this, John, but my brother has doctored in education and he has taken on a job that starts, I think, tomorrow where they have 4000 something students virtually attending school. Yeah, we talked about this last week. Yeah, yeah.

Because my kids are in distance learning as well. And that's, you know, this came up and it's just a crazy time for everybody, but especially for caregivers. Well, one of the things that Richard said, though, as hard as it is for families of normal children, special ed children, it's just brutal.

It's a catastrophe. It's like what Meredith is saying. Meredith, when do you have to make your decision by?

You know, I don't know. I have not really felt pressured. They think they want me to feel pressured, but I don't because I just know that, I mean, at the end of the day, she she has the right to an education. And it is my job to fight for her right for the best education for her and for our family. And so fighting for that means that even if I decide the night of September 7th, I feel like I could fight hard enough.

It was good. I mean, I'm a good fighter. I'm not a mean fighter. I'm I am very much a teammate of my school, but I feel like they would respect my decision September 7th. Or if I changed my mind September 10th, you know, with classes starting on the 8th, I feel like they would just respect my decision. You know, I've always been a team player with our school and I'm incredibly supportive of them.

And I think in return, they are supportive of me and they know that this has been a hard decision. We actually went and had a I I brainstormed for hours trying to come up with a way to keep anything on indicate that would protect her because we have a mask mandate at our school. You have to wear a mask. And I mean, she's not going to keep that up. And I'm thinking, I mean, she's going to keep that on. You know, she can't pick up a piece of food by by goodness. She can flip a mask off her face in about one minute or less. And she also drools really bad. She sees this.

And when she has seizures, you see them in her mouth first. So a mask is really just not an option for her. And so we designed a shield that she has a tray that attaches to her wheelchair. And so we designed a shield for her wheelchair that she can then kind of covers her.

So it's more prompt. I mean, it will help protect others from her germs if she were to have germs and we not know about it, because I would never send her to school if I thought she was sick. But it will also this this is this could come up and down in front of her on her wheelchair like a tray. If you can put it on and take it off, it has her tray has a little lip around the edges of it and it attaches to that lip.

And so it is made of a specific kind of kind of plexiglass. So I wanted it to be where she could see everything going around on around her because I think that's still important for her. That's what she's missing is being at home. She's kind of got to feel like I do that these four walls and these things, you know, five of us are about to go nuts. But I think it'll be good for her if she can get back out and do a couple of errands, you know, possibly go to school. This will help other people know not to get in her space because her peers that are mobile, they don't understand that they right now don't need to get in each other's faces.

But her shield gives that subtle prompt that they can't get right in her face. So if we actually got it last week and we love it, she likes it. So did you create this? I created it and then I went to I didn't have any tools. A lot of people actually love to build that. I didn't have any tools that plexiglass.

And so I called a local glass company and asked them if they could assist me. And the very nice man who owns the local store said absolutely. And he got really excited about it. So he took what I had designed because I had designed it just to Velcro onto her tray. Around the lip.

But he had. I got to stop. I got to stop for just a second. My cousin is brilliant. She's a Georgia Tech grad. Engineering. Was it mechanical engineering? No, industrial engineering. Industrial engineering.

I'm a numbers girl. But she also, for her sons, she was the captain or the whatever you want to call it for the robot building club. She was the coach for the robot building. And I asked her, I said, are you building those robots that like attack each other? She said, no, that's not what we do. But I really that violates the first law of robotics. All right. Come on.

I wanted to see the robots with the salt, the big salt spinning blades, you know, that kind of stuff. And she said, no, that's not what we do. But on the weekends, you know, after class, that's what she does. And so here she is doing something innovative like this. Meredith, don't let somebody steal this idea from you. Makes money off of it. No, I would. You know, I talked to the store that I went to our local store.

They're great. And they're like, you know, we need to start replicating something like this for others who have the same. I mean, it's not the only person in a wheelchair in the city that we live in.

We live in a small town, but it's not that small. You know, if the people people are isolated, if you have like an immune issue, if you have if you're in a wheelchair, you're isolated right now. And it is hard to be isolated for a long time. You can have all the support system in the world of friends and family.

But when you see the four walls of your house for one hundred and fifty five days, it's hard. It doesn't matter who you are. And so she was I guess. Have you tested this on her?

Get out. Yes. Yes.

Does she respond well? I have pictures of it. Yes. Well, I got to say, I didn't see that. Wait. No, I did see that. I did see that.

I'm sorry. I did the other day and I love it. And my husband is like, you crack me up. I mean, he's so thankful that, you know, we think outside the box. I think when you're a parent or a caregiver at all, I mean, you learn how to do all kinds of things in weird ways. I can lift her, you know, by myself pretty much wherever I need to get her. And she's almost as tall as I am and weighs almost as much as I do. But you learn how to do all kinds of weird, innovative things because that's survival.

Well, what are you laughing about? When I buy shoes for Gracie. And the family comes out. We have a weird, innovative family anyway. But when I buy shoes for Gracie, because it's hard for her to go to the store.

I mean, it's just hard. And so I'll take a foot or her leg to the shoe store, then I will video conference her with it. I'll make sure you get the right size. Then I'll call her on her phone and say, all right, do you like these? And the store clerks over there, you know, they're just a little bit wide eyed and they're starting to, you know, kind of freak out.

Maybe call security. Here's this man out of a trench coat, pulls out a leg. Not a good look, Peter.

Not a good look. But I've got to be creative, though. Yes, you have to be creative and you have to think, you know, beyond what you would normally have to think to make things happen for yourself. Well, you do. And you and Barry and your whole family have kept such a, you know, amazing sense of togetherness and fortitude and a good sense of humor. You know, that I think that let me ask you that. How important to you is that sense of humor, Meredith? I think it is everything.

I think two things. I think, first of all, we have to laugh at her. And that sounds terrible. But I mean that in all the right way is that we have to laugh at some of the stuff she does or that she says or that she, you know, tries to do. And you have to laugh. And, you know, you can't feel sorry for her. I do feel terrible for her some days. But a lot of times she's just being funny.

She's 16 and you have to be able to laugh. And we have to laugh at ourselves. And we have to laugh as a family. And we do. We enjoy it.

And my kids laugh at her and they make fun of her like she's their sister because she is. Just because you're impaired does not mean you're exempt from picking at each other. Well, I watched this with my brother and his two sons and they pick at Kelsey and Richard picked.

I mean, they all do. And that's how we all grew. We did that to Tommy. No, by my youngest brother. He wasn't impaired.

We just did it to him anyway. But it's, no, I think you learn. And I've watched this with Gracie. And Gracie is very funny. But she doesn't try to be funny in the sense of like, I'm going to tell a joke. She can't tell a linear joke. I mean, she just can't do it. But then she will say things that are just so, I tell her, I said, baby, you can't talk in a straight line.

You can't walk in a straight line. But boy, when she says something that's funny, impromptu with it, it'll stop. I mean, it'll be one of those moments where you just can't help it. There are times like we're going to, I'm getting mad about something and we're about ready to have an argument or something.

And she'll say something so outrageous that you just can't help yourself. You start laughing and you realize as caregivers, we've got to have that release of laughter. We've got plenty of tears. I know you and Barry have had your share of tears like we have. But do we laugh as much? I don't watch, and this is so petty and silly, but I don't watch anything serious on TV.

I'm not kidding. I don't watch movies that make me cry. I don't watch things that are very drama laden because I just can't. I feel like I have a certain amount of like ability to process hard things.

And why would I add someone made up hard things to my heart? I like that. Stick with documentaries. Yeah, I watch documentaries. Yeah, I watch I watch historical documentaries and things like that, but there's very few drama movies that I watch. Yeah, but if those historical things make me sad, it's people not watching them.

And I know that's not really silly, but it's true. If it's not funny, if it isn't there to make me laugh or to kind of lighten what's going on, I'm not. I don't have any. I just, I can't. I watch a lot of Three Stooges.

There you go. I'm so sorry. I love it. I watch a lot of things like Friends or Don't Laugh. We watch Unprostacle Jokers because it makes me laugh. Oh, that show is outrageous.

My sister got me on that. And that show, have you watched that, John? I have not, no. Unprostacle Jokers?

Oh, do yourself a favor. Hey, I pretty much live that life. Those guys are nuts. They are insane. They are. But they're funny. They are funny.

But you got to kind of watch it with a group, you know? Oh, right on, right on. Okay. But that's the kind of thing that I wish we had been a little bit more ahead of the time because my family would have done something like that. Y'all are older than that.

We would have done it. You know, I just appreciate you. I marvel at you guys and I watch what you do and the encouragement you are to so many.

I see your exuberance. I watch how your whole family is engaged and your sister and her family of what, 17 now? I mean, how many kids does she have?

I think it's 45. They're foster parents and so they just. She's a foster and she's adopted so she has six birth children, two adopted children and then an assortment of foster children. Today I think she has two, one. She may only have one foster right now.

I think two have gone home. She had three and I think she has one but it'll be any moment she'll call me and say, I had a baby. And she'll have some new kids but she's amazing.

She's amazing. Well, all of you are and I would like for you to call back when you make your decision. Okay, just let us know. Yeah, and I'd like for you to know what you said and either way, it doesn't matter. I just want to see how you're coping with it and then some insights that you could offer to other people. Because, you know, other people are wrestling with this too. And they may not have as much longevity and insights that you've been able to acquire over a long time of doing this.

And I think it would be very important for people to hear that from you. There's a lot of guilt related to the decision. There's a lot of guilt. You just feel like you're guilty keeping them home and you're guilty sending them if they get sick, then it was your fault for sending them. That's what you tell yourself as a parent, as a caregiver, is it's going to be my fault. And that's a hard place because it's not my fault.

And I know that. But it doesn't make you feel less of that because the world thinks that, you know, I stay home. I'm a stay at home mom.

I do not have a job. So I could keep her home. But keeping her home may not be what the best thing is for her.

And that's the first thing that I think for me as a parent, trying to not have guilt is challenging. I got about 2000 things to say about that. And we're out of time. I just, Meredith, you have once again demonstrated why you are just such an amazing. I'm just grateful that you're in my family. I really am. This is my cousin, Meredith Harris.

Well, said no one ever. But we are out of time. This is hope for the caregiver. And thank you for being a part of this. Meredith, we want to hear back from you guys as many times as you want.

Hope for the caregiver dot com. We'll see you next week. John, John, how you doing? Hey, granddad, you know, do you know that there's a pandemic going on? You know, I read a couple of stories here and there.

He saw something on Twitter. Yeah, yeah, yeah. No, I went into Walmart and they said I had to wear a face mask. I'm like, cool, but why? Hey, pants are not required, but face masks evidently are in Walmart. I just thought they were telling me I was a little bit ugly.

Just like Rodney Dangerfield says, they told me I had to wear two face masks. But the reason I'm referencing that is because you know of our work for many years with prosthetic limbs. And we can't go to Ghana right now.

Certainly I'm not going to take Gracie over there. We've been going to to to Ghana for many, many years to help work with amputees over there. But we've been sending supplies and we're sponsoring more patients.

But we're not sending teams right now because we just can't. And we've got patients that are lining up that are really needing some quality prosthetic care and we're contracting out with prosthetic providers. They're in West Africa, in Ghana, and they're helping these patients that we really are urgently trying to treat. Get them up walking. One of them is, and you know, one of the criteria we have with our patients, John, is we target children and working age adults, children, students and working age adults. And really in that order. Gotcha. Because we want to give them a fighting chance to have a productive life with a quality prosthetic limb.

This is what Gracie envisioned after losing her own legs. And it's not that we don't want to help aging or so forth. It's just that that's where our targets are. And lately we've been having a lot of these. And we've had a lot of kids.

We've had some students that are getting close to their graduation, but they're constantly needing prosthetic adjustments or a new leg, a new socket, new liners and sleeve. And we're trying to ship things over. We're trying to sponsor things and contract with the workers there to do it. And we could use the help. So I'm asking standingwithhope.com. Would you just take a moment to go out to standingwithhope.com. Look at the work we're doing.

Look what you're seeing and get involved. And you could certainly write us and ask us any questions about it. But we would love to have your help today. We really need it today for any donation amount.

Whatever's on your heart, doesn't matter. We're going to send you a copy of Gracie's CD. And we just want you to know that this is what we're serious about doing. We've been doing this for a long time. We can't go over there in person, but guess what?

We could still help them get up and walk. And you could be a part of that today. It's a gift that keeps on walking. I came up with that myself, John. Oh, yeah, did you?

Pretty proud of that. The gift that keeps on walking. I like it. But it does. It does, yeah, it's true. And with Gracie being a double amputee herself, we understand that in our world. In fact, we're dealing with prosthetic stuff right now with her.

Because she's constantly needing adjustments and so forth. And so we understand the need and we're asking you to help with it today. So go to standingwithhope.com today. Thanks so much.