#448 Fighting for a Child

Navigating Mental Health

Whitney's son has type 1 diabetes and the support that he needs is impossible to find.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:09
Hello friends and welcome to Episode 448 of the Juicebox Podcast. On today's show, we have Whitney Whitney is the mom of two children, one of whom has type one diabetes. But the diabetes are the least of their troubles at the moment. Her child has some other issues that she's been trying to get help for. And it has not been easy to find someone to lend that help. This episode is going to be in depth and honest and light hearted at times. But overall, it's a look into the mental health system and how it can be very challenging, especially if you have type one.

Please remember, as you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin.

This show is sponsored today by the glucagon that my daughter carries Gvoke hypopen, Find out more at Gvokeglucagon.com/juicebox. Today's show is also sponsored by the Dexcom G6 continuous glucose monitor. You can get started today with Dexcom by going to dexcom.com/juicebox. And please don't forget to check out touched by type one. You can find them on Facebook, Instagram, and it touchedbytypeone.org. Leave the video on and see how it goes. Okay, you might have a super strong signal.

Whitney 2:09
I mean, that would be news to me, given this whole plague.

Scott Benner 2:16
I don't think the plague affects Wi Fi does it?

Whitney 2:18
The sheer quantity of people on the Wi Fi Yeah, I mean, especially during the day.

Scott Benner 2:23
There was um, there was this interesting moment. I don't know where you live in the country. But Howard Stern, the Howard Stern Show had to be off air by 10:30am when his neighbors woke up and went to work because it was

Unknown Speaker 2:39
it's very fun.

Whitney 2:39
No, we're outside DC so um, it's it's decent, but we live in an area with a lot of townhomes. So everybody has their Wi Fi signal up. And it's it's interesting. We're in this time where we have the Facebook page for the neighborhood. And it's like, okay, it's at about a seven. It's so it's okay, that's it for today, everybody. So I wake up and get the daily update on how bad the internet is. Because, I mean, we have me working. My husband working and my other son in school. So we're all a giant internet suck in this house.

Scott Benner 3:12
So because of the podcast, I have a fiber optic line, dedicated cable I can like, I can send a ton of information up and down really quickly. At one point, my son, his friend, my daughter, two of her friends, my wife and I were all using the internet in the house, and I was like it worked so

Whitney 3:33
well. I did a really good job of talking to my family about being quiet. Uh huh. So I had a conversation with my son. I had a conversation with my husband who is very loud when he's on the phone. But the only person I can't control in my house is the dog and he is very sensitive to people walking in front of the house. So welcome to COVID I gotcha.

Scott Benner 3:59
No problem. Introduce yourself. Do we just

Unknown Speaker 4:04
go over that? That's really awkward. Yeah, but you got to do it.

Whitney 4:07
Okay, so my name is Whitney. I work for the US government. So does my husband. We're both diplomats. So usually we serve overseas. We have two sons. Our youngest is seven going on. 22. And our oldest is 12. And he's been part of our family for about a year and a half now.

Scott Benner 4:30
Okay. Um, okay. You stole him from the mall? I imagine. I

Whitney 4:36
did. It was really a big ordeal. There was news about it. No, he was a family based adoption. We had a good relationship with Him prior to it, but we lived overseas pretty frequently. So we didn't see each other as often as we would have liked. Got it. But we did have a relationship prior to adoption.

Scott Benner 4:52
I know we're not sharing a ton of details about all that which is absolutely fine. I just didn't want it for the next half an hour people to wonder how you just can't okay.

Whitney 5:00
I really wanted to learn how to manage diabetes. So I found a diabetic kid and I adopted him is that not normal? So he had

Scott Benner 5:07
type one the entire time you knew him?

Whitney 5:10
Yeah, he was diagnosed with type one, when he was three, he had a really bad incident. We are not aware of how the management was prior to the adoption, we are aware that he ran pretty high. He, he didn't manage it, as well as I think someone who listened to your podcast would. But he didn't have any other large scale incidents, except for once where he was given a snow cone with uncovered insulin. But other than that he was alive and well. But we have explored and done some research based on the effects of those long term highs during development that could have affected some of our ongoing concerns. Gotcha.

Scott Benner 5:51
So Whitney, I have to say that I have 401 episodes up, as this moment, I think I have 67 of them recorded, which puts me close to 500. And I, I put people on this show that I'm interested in talking to

Unknown Speaker 6:11
no one ever, until you just let me just say bullied their way onto the show before.

Whitney 6:20
I mean, when you have an issue that has like taken over your world, and you see discrimination at its real roots, in terms of disability, it hits you it in a place that is really hard to handle.

Scott Benner 6:35
I can't imagine But I have to tell you like I see it privately, privately, people be like, please look at my graph, please. Like I'll get like, sometimes I'll get

Unknown Speaker 6:43
diabetes.

Scott Benner 6:45
A problem. But so I'm, I'm very slow to put the show together. There's there's some times when I'm not like I admitted in the the after dark heroin episode Niva sent an email and I responded back to her in eight seconds. I was like, Yes. Here's the link book the show, let's go because I thought wow, this is clear, right. And I'm not gonna lie. People's writing tells me a lot about how they'll be on the show. And your your emails were great. But you literally this, you could not have chosen a worst month to try to write, like, there's

Whitney 7:20
a good reason I had solid reasoning for why I wanted to do it before next week,

Scott Benner 7:25
hey, you're here. So it's fine, right. But I have like a list of things in front of me that I'm supposed to be doing right now. And none of them are talking to you. So sorry.

Whitney 7:35
As I said, beginning, we're diplomats, we serve overseas, things change after elections. It's really hard in our world. But I will actually highlight the real reason that and if I don't know if you recall, but when I started and we'll get into the specifics, when I started facing a lot of the problems, I actually reached out to you in the first place, because I needed help finding a place and I needed somebody who had been through it. And I had to hit every Facebook group I was in, and I couldn't find anybody. So actually, you reached out on my behalf, to your community to see if anybody knew anything. So that was I think, like six months ago. So I definitely tapped into your resources as much as I could as soon as I could.

Scott Benner 8:20
So your the thing we're going to talk about here is not incredibly common. But people listening would be surprised about how frequently I hear from a person like you in a situation like yours. So it is not uncommon in my world to go ahead and tell me why you're on the show. Tell everyone

Whitney 8:38
because I bullied my way on No. So my son is a type one diabetic who was raised in a different type of environment that is necessarily the most healthy and has experienced a great deal of trauma. And his coping methods for that trauma were never well developed. And maybe even very poorly developed. So when we adopted him a year and a half ago, I was so ready for the diabetes. I did all the readings. I got all the books I I listened to your podcast before I had a diabetic kid in my house. So I was ready. But what I wasn't ready for was the mental health issues. And that was really rough on the family.

Scott Benner 9:24
What's the scope of the concerns?

Whitney 9:27
So we originally when we originally adopted him, there was a diagnosis of autism and ADHD at this point in time because of the way things are fluid with his treatment. He's at bipolar, something called rad which is very normal in adopted families, which is reactive attachment disorder, and he still has the ADHD. But right now as we are trying to get him treatment, the formal the formality of what is wrong with him. is less important than getting him the help he needs?

Scott Benner 10:02
Yeah. Well, that makes sense. Did you hear Jonathan's episode?

Unknown Speaker 10:06
I don't know. Reminds

Scott Benner 10:08
me Jonathan's 20. He He's bipolar has ad. Oh, yes, I did. I did. Okay. Did that did what he was saying ring, like close to your experiences, I guess minus the drug stuff,

Whitney 10:21
I think yes and no, like, it's interesting. They're hurt hear it firsthand. But I think my son's problems are more stemmed to coping than it is to living day to day he hasn't done to live into day to day, what we found was that my son is really has a hard time with being told no. And what we were able to deduce in previous Homes is that being told no was a way to get attention. And he would have what were normal at age five to six tantrums, but now at age 12. And my height, and getting to be a young adult with you know, a little bit more strength, for our tantrums are a little difficult. And we'd he just didn't have doesn't have the coping skills to recognize he's upset and do the things you need to do, where he at this point in time will scream for four hours using curse words using language like you're killing me. So I've had a lot of conversations with my neighbors. I'm not killing him, I promise. And it's less the bipolar because as I mentioned, the diagnosis, these have just been so in and out, it's more about him and his problems. But the main key to his problems is that they are locked in on the parent role. So he doesn't react well to being parented, essentially. So the diabetes management ended up being a large part of it. Because agreeing on food, agreeing on food with 20 minutes ahead of time, we had a huge problem with sneaking food in our house. So all of our refrigerators and cabinets got locked up. We got really creative, there's bells on every cabinet in my house, we just had to find a way. And it wasn't that we were limiting what he could eat, he would just take any opportunity. And he had no impulse control, it's part of the rat, he just can't contain it. But it got really bad in the house where we just couldn't manage it. And I I'm an economist by trade, my husband's an attorney by trade, neither one of us are developed Child Development therapists and when we were dealing with for our tantrums multiple times a day, and and during COVID times when you're alone in your home, and there's nothing else you can do. And it got to be really bad. And we were having cops arrive pretty much daily. And that got to be really rough on the family.

Scott Benner 13:03
Well, I would think that it's not that your pardon, this isn't very important. But for the child as well, this is obviously not a productive way to move forward, and there's got to be better options, you need to find those options.

Whitney 13:17
100%. And then the other issue is also the transitions. Like he he transitioned a lot before he landed in my home because they needed an intermittent care. So he's got these deep seated problems with trust with a parent figure staying and remaining and, you know, just loving and those problems are also very rooted in all of his his issues. And rad

Scott Benner 13:39
is I don't know what it stands for. But it's um, it speaks to not being able to form like bonds with people is that

Whitney 13:48
healthy, long lasting, meaningful bonds. So he has, he also has problems with friends, he gets along much better with children younger than him, which is also very common. But at the end of the day, it was very difficult because his issues really are mainly presented in the home with us, which is is normal in this type of arrangements. So he wasn't having problems at school. So the resources that would have been in a little bit more available through the public school system weren't available to us because he wasn't acting out in school. He wasn't getting suspended. He wasn't getting in trouble in the same way. Okay,

Scott Benner 14:25
so he pulls it together when he goes to school.

Whitney 14:27
Oh, yeah, totally. And that's why we were able to eliminate the autism diagnosis and some of the other diagnoses because he totally pulls it together. What he totally pulls it together when he's not in the house or he's not dealing with us. So sometimes when he's we are in public, he still loses it but it's based on an interaction with us.

Scott Benner 14:49
Okay, so it's, is it psychologically, I'm trying I'm guessing here but is is it like any opportunity to push you away before you can push him away? Is that the idea?

Whitney 15:01
That is, that is the basis of rad, but with, with my son, I think it's more about, you said no to me, and I am used. I want this and an inability to think about anything else. So we in public one, we were out, and there is a coffee bar near our house that we all frequent very often, and they have really good paleo snacks because I personally am paleo. And so I was saying, why don't we get one of these, and he got in his head that he wanted a muffin. And I was like, let's just get one of these. They're smaller, we don't need a whole meal, you have to wait 20 minutes, and the whole muffin thing would be a lot harder. So he basically laid on the floor and screamed in the coffee shop, because he had thought about a muffin. And now he couldn't think about anything else. Gotcha. And it's also what you said, it's also, you know, coming at me, and I'm the new authority figure who, why am I the authority figure? And he's not, there are a lot of questions there. But it's a lot of facing the reality that I can't always have what I want, which, you know, I would love to eat a million muffins, but we can't, it feels

Scott Benner 16:07
like the same thing that I think most people see with a child, any child raising them, is that magnified a million times in a larger body with no end in sight? Because we've all had these, like,

Whitney 16:20
I've got 100% Yeah, like I have a seven year old. I know,

Scott Benner 16:24
there's times where every parent has turned to like their spouse and like, privately with, okay, this is going on long enough. We need to shut this down right here.

Whitney 16:33
Exactly. And with my seven year old, we can do that we can say, okay, you need to go upstairs, you need to go cool down. You need to read a book, you need to even watch TV or plug into a tablet. My other son just couldn't do any of those things to get out of that mindset. And now we're looking at 12 years old, with a fantastic curse word vocabulary. second only to some of the comedians I've seen on the internet. Like he was like, I know that I'm supposed to be upset. But my husband and I would be like, that's just impressive. Yeah. How do

Unknown Speaker 17:07
you string those together like that?

Whitney 17:08
He like made it so it was it was super cool. I mean, you're in trouble. But

Unknown Speaker 17:12
awesome. Love the Way flowed here?

Unknown Speaker 17:15
I haven't heard that use that way. Yeah,

Scott Benner 17:17
a lot of people go right from dirty debt. But you, not you, not you.

Whitney 17:23
Well, but to the extreme that we had to have conversations about certain words that were really inappropriate, inappropriate for public for this skinny little white 12 year old to be screaming and I'm like, Oh my god,

Unknown Speaker 17:35
no one's gonna beat me up.

Unknown Speaker 17:38
Please, stop.

Unknown Speaker 17:40
Exactly. Please love God, I

Whitney 17:42
just need this to end. But it wouldn't. And sadly, that was the problem. The fact that we couldn't get it to end and they started happening. So much so that literally the whole day from morning till sunup to sundown was a my son's tantrums. And we started to see the facts on our other side who to this, you know, is now doing his own therapy to recover from what we call PTSD. Because when you're living in a home with constant screaming and constant expletives, and to some extent, some violence, mainly targeted a mom, but um, you know, that kind of has effects on you. So

Scott Benner 18:23
why? I'm sorry, I want to I do want to get the rest of it. But I'm just I'm thinking I'm just picturing your younger son would feel defensive of you. And your no ability to really handle it because he's smaller, and probably up until five seconds before this all began. He didn't have experiences like the ones you're like, you didn't curse at him for fun. That right, yeah, so he This is like his, so his life was just going along, like, Okay, and then you're like, we're gonna adopt somebody? And he's like, yeah, right on, we can do that. And then the guy got there. It was like, hey, man just

Unknown Speaker 18:58
released a tornado.

Unknown Speaker 18:59
Yeah.

Whitney 19:01
And yes, there was cursing in my house I ever posted that says, Don't curse sitting next to me. But no, not to that extent. Yeah, so it has effects on the whole house. And then when we hit COVID time, we just, you know, we all got tired. And we all got, we couldn't, we just couldn't. And we didn't have any help. We weren't able to access any networks in the area that that could help us. And the resources available, which I'll get into now on, started to be limiting whether it was because of you know, insurance, which I'm sure you've everybody, you know, can roll their eyes and insurance. But also we started running into problems where there were laws and regulations and things we didn't know and resources that would have been available to us had we had done things certain ways. For instance, there's a lot of resources available to you if you adopt a kid While we made the mistake of adopting in Pennsylvania, which is where he lives, and then living in Virginia, so neither of those states will support us in the adoption because we don't reside or adopted from there. So Well,

Unknown Speaker 20:14
yeah, it would state the state.

Whitney 20:16
Oh, yeah. And so you learn these things as you go that like, all those different types, but when it became very clear, my son couldn't remain in the home. And this is why I reached out to you in the first place. Yeah, we had to find something to do. Um, and I was in a lot of mental health groups and talking to a lot of adoptive parents, and they said, like, one of these behavioral type programs would be perfect for him. So I started reaching out both with our insurance and trying to locate one of these types of programs, that would be great for him. And we kept getting the same response. We don't take children with diabetes. And they even put that in emails and said, very clearly to us, we can't take your son because of diabetes. And in the beginning, that was like, Okay, all right, next one. But things got worse at home. And it became very necessary and resources I reached out, we found that there was a emergency hospital based place, he could go temporarily, in Virginia, that it was a hospital, so they didn't give me the diabetes thing. But he had a CGM line. And it just it was interesting to watch someone else manage his diabetes. But at the end of the day, this wasn't a permanent solution. Because this is supposed to be a triage. These are for children who are in crisis, these are for children who need to get out of their home temporarily. But this isn't meant for long term residential health. So I continued working with this hospital, after he was in care for 30 days, he qualified for Medicaid. So Medicaid started helping me BlueCross BlueShield started helping me and the hospital started helping me and we didn't find anything. Well. And there were, I think, my husband and I counted 50 institutions that blatantly put in writing or said, we can't take diabetic kids. And the number one reason they cited is we don't have a full time nurse. Okay. And, you know, I always responded with Well, I'm not a full time nurse. And, you know, we he goes to school, and it's a public school nurse, but it's a nurse for the whole school. It's not like he needs a dedicated person. And it's not like you need full time care. And I think everybody there know, everybody listens to your podcast knows we monitor we watch, but it's not necessarily full time hands on care. And go ahead, sorry.

Scott Benner 22:58
Well, no, I'm just thinking. So these are all private institutions, or some of them public. They're all private. Right?

Whitney 23:07
So that's a complicated question. So they are all run by private companies. But what you can see based on their websites, is they all get public grants. So they're supported through grants from the government, and through funding from the government.

Scott Benner 23:24
Was that your pathway to finding something? No, no, no, be like, hey, you're getting public money. Stop it.

Whitney 23:31
So that is our pathway to lawyers. So we did. So I don't know how familiar everybody on your podcast is with the American Disabilities Act. But the American Disabilities Act specifically says you cannot discriminate against a diabetic person, right. So usually, people use this act when it's like job purposes, you had your your you've had various people with various different types of jobs who had to fight for that job. And the American Disabilities Act is the way to do that. And it's also used very much for people with wheelchairs and hearing impairments and and blind impairments. But there is a very clear clause that says endocrine, so it doesn't even say your endocrine disabled. And despite the fact they use public funds, and despite the fact that this is clearly articulated in law, they said no. And the rationale behind that was, what am I going to do? Right? And that's kind of why I wanted to talk to you and raise this issue, because that's the truth. What are we going to do?

Scott Benner 24:42
So people run into this scenario, where were the institutions bigger than they are? They just say no, and then hope that you go away, right, which you probably would have if there wasn't a 12 year old. Exactly. Exactly calling you at 30 something.

Unknown Speaker 25:04
Hey now, but yes 100% to be honest

Scott Benner 25:07
with you, this is such a serious topic, but I'd love for you to tell me some things that he's caught you and I'll just beep it out. I just because I want to know, but it'd be a waste our time.

Unknown Speaker 25:17
You can bleep all you want, but everything was off.

Unknown Speaker 25:20
Oh, really?

Whitney 25:21
Yeah. And I was like, I think you're using that. Maybe, but I'm not down with the lingo you know. So maybe he's using your right to put everything was tough. And I'll when I think of some of the more creative but but, but like to the point where Dad and Mom, y'all are just super jacked off and it was like, What?

Unknown Speaker 25:44
Isn't? That's clearly

Whitney 25:45
not happening in public too. So that's fun. We're not I swear,

Scott Benner 25:50
I would love to see your husband in public. I'm not sure. Everybody, please. I'm not verifying my hand. See my hands. I'm good.

Whitney 26:03
We did have an incident where my son was losing it on the front lawn. And neighbor came out and said, Can you you know, get this under control to which my husband said can you bring in

Unknown Speaker 26:15
ideas? Yeah, I'm open to ideas.

Unknown Speaker 26:18
I hadn't thought of that. Hey, buddy.

Scott Benner 26:20
Look, the jerk. Next Door is here. Okay. All right. Yeah. So so you get to see you. You run into this situation where the every is and you said, Oh, like 50 maybe

Unknown Speaker 26:35
50 we have a list.

Scott Benner 26:36
We're like, no. Uh huh. I want a backup for half a second. Where does that put you? What mindset does that put you in?

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Whitney 30:17
So it is so devastating as a parent, to have your son not be able to get the resources he needs in the moment he needs them. For something that's not his fault. I mean, it's, it's, he needs help he it's very hard to explain how overwhelming it was to not be able to get in and I hadn't run into this because I'm, you know, I'm, I'm a bully, get what I want.

Scott Benner 30:50
I was thinking you're probably not accustomed to things not going you're

Whitney 30:53
not used to things not working out if I put my mind to it. Now, if I'm being lazy that that's on me Sure. But as a parent, I'm not this was the first time I was put in a place where my child needs something, and I can't fulfill that need. And it was for something that, you know, I can't do anything about. And when we were dealing with every organization, it was very clear that they knew that they knew that they had the power. And that that was that. And this is around the time I actually reached out to you and the community. And I want to thank your Facebook community because they were really awesome and jumping in with some ideas, and putting me in touch with some other people who had no, we were able to locate another hospital. So that's I need to be clear about that. This isn't necessarily a long term residential health facility. It's another hospital specializes and allows these type of kids in. And we got a special waiver which took our connections with the city, which we just happen to have, and a very persistent, loud mom and dad to get him in. So that is where he is now. And this is the only facility facility in the United States that would take him. And I don't want to get your podcasts in trouble. So I'm going to mute, I'm going to lower my anger at this. But a week later, an article came out about previous experiences of this hospital, which made us dead devastated because now we're the parents who are leaving their kid in a facility that has horrible stuff happening in the news. And we can't take him out. Because there's nowhere else that will take him. And it's and I will say this, that I'm not alone in this. Because while he was at the first hospital, several other moms came through with kids with type one. And it was very interesting, because the population of type one in this area is not as high as other areas where I know it's very common. But in Virginia, it's really not to have two other girls come through the program that were type one that could sit down and we talked and we had conversations about well, what do we do? Yeah. And the answer was nothing. We have nothing we can do. We can't get our kids are helping me.

Scott Benner 33:19
Yeah, and having diabetes shouldn't be the the reason that anything doesn't happen for you. But this seems more dire and specific, it's not going to go away. It's not even like, it's not even like he broke his finger. And I won't know because he has diabetes. So it's just gonna you know, he'll little Ben, you know, like this is not going to stop happening, it's probably just going to get

Whitney 33:41
worse, worse, much worse. And I do think that there this is a problem in the diabetes community because we do see and I know you've had many kids, many people on talked about the mental health issues associated with just being diabetic, whether it's a child who grew up with needles and grew up with medical that just needs some help and talking through things. The minute things get serious, the researchers aren't available for these kids. And I just, I was floored because it's 2020 you know, I wasn't expecting this type of blanket. And I know I'm using the word discrimination and it usually has different connotations, but in this case, that's exactly what it was. It was discrimination.

Scott Benner 34:21
Yeah. But obviously, it's the way it is because you got the same answer over and over every race is a tried and true defense for these organizations to use. Oh, diabetes. No, we don't do that.

Whitney 34:33
Yeah, yeah. 100%. And to the point where, where I was trying, in my mom way, I filled out the application. I didn't mention it. We just talked about it. We just talked about it. I went back and forth with them. They're like, Oh, other issues. I'm like, type one diabetes medication. I'm like, no vlog. And then I like I put it in hoping. I don't know what I was hoping. But at this point, I'm desperate and he Either in my house or in the emergency facility and I don't know what else to do, and even now, even now, he's not necessarily getting the best care he could. He's not getting the best of the best of the best. And he's not getting what he needs, which is more behavior based therapy because of the diabetes and that's it's still I can't get past that.

Scott Benner 35:24
Yeah. And there's And to be clear his situation isn't it's not that you don't want to be involved it's not like going to a therapist twice a week would would straighten this out No, no

Whitney 35:37
it when we were doing that. No, I yes, of course there for for more minor things. We're not maybe if he was with us since he was born. These would all be different issues, but these are pretty severe mental health concerns.

Scott Benner 35:52
I just wanted to make sure that we were articulating the you're not you're not a person who's like, Oh, I adopted a kid and it's not going the way I want it to where do I get rid of it? My

Whitney 36:01
biggest nightmare you just articulated my fear that everybody was thinking like right and the problem with was was he wasn't presenting with the problems so it got to the point where I felt so awful because I look like I'm trying to dump my you know, adopted son off which is not the case. So I ended up having an and this is both creepy but necessary. We had to put up some cameras in the house to ensure that no more food sneaking was happening. Because Whoa, is that kid creative. Like creative like he snuck calls like the the sucky throat. Yeah, like it's not in it wasn't, I'm hungry. It was. That is edible. And that is in front of me. And I can't not eat it. So yeah, it was a really bad impulse problem.

Scott Benner 36:47
So he wasn't. Oh, yeah, I

Unknown Speaker 36:49
that

Whitney 36:50
was that was unexpected for me.

Scott Benner 36:52
Right. The cough drop was probably like, Huh, I didn't think the lock those up.

Whitney 36:56
Exactly. Yeah, animal palms was another thing. I didn't think to lock up. Really? Yeah, I found them in his pocket. And I said, you know, this is medicine, like it's for when you're sick. I don't understand. And so we talked about it, but it doesn't make the talking about it didn't make the problem go away. So anyway, we had the cameras up. So I was able to film some of the more serious meltdowns and provide that to the experts who weren't seeing the meltdowns. And they were like,

Unknown Speaker 37:24
oh, okay, yeah.

Whitney 37:27
And aggressive violence, which they weren't seeing as well.

Scott Benner 37:30
But still, how does that motivate a private institution?

Whitney 37:34
No, it doesn't, oh, it completely doesn't they don't care. Their number one priority is their own liability, which, you know, we all have to understand. And I'm used to it. But if, you know, their fear is he'll have an insulin overdose and it's on them.

Scott Benner 37:48
Yeah. And there's no way for you to not I guess not that you would want to, but can you sign away your rights to sue or something like that they get the care. I mean,

Whitney 37:58
I mentioned my husband's an attorney right here. Never in a million years do that. But it at that point, if it meant getting him in, but No, nobody was having it. There was one institution that actually said we're not taking him because he's autistic. And I said, Oh, okay, good. I have this report from Kennedy Krieger, which is an institute in Baltimore, which is like the best place you could go that says he's not autistic. Read it. It's great. And they're like, Oh, it's actually the diabetes

Scott Benner 38:27
never meant diabetes. Or else you're going to say,

Unknown Speaker 38:33
Yeah, 100%

Unknown Speaker 38:35
Anything else? Wow.

Scott Benner 38:36
I feel like I feel like you're describing an argument I once had with a girlfriend. Where I was just like, what? 100% I genuinely feel like I'm making sense. I don't understand how you keep coming up with alternatives to the, to the the reality that we're living in. But but that is exactly what happened is that no matter what you were gonna say it was so so is the place he is now literally the only place you could find it really is.

Whitney 39:02
Had I not mentioned the other articles, I would say the name of the place, but I will say that a lot of your listeners suggested this place. It's very well known for taking diabetics. Okay, um, but then again, all this article comes out. And now not only my the mom who dumped, who dumped the adopted kid, and the mom who dumped the adopted kid in this place with all these rumors and horribleness and now I just, yeah, now I'm back to square one. So I have all his social workers restarting the same process

Scott Benner 39:33
looking for a different place who doesn't have like allegations about stuff?

Unknown Speaker 39:37
Yes, that would be

Unknown Speaker 39:38
great. But it's not that

Whitney 39:43
but I would have it was interesting because my our rep with Blue Cross Blue Shield. Her name is Bevin and she was amazing. She said to me, I mean, I started with Medicare. She said to me, this has never happened before. We've never not been able to place a kid before. fork, this is Medicaid like they please everybody, right? And they just kept running into things like,

Scott Benner 40:09
well, so what's the answer this, let's take us out of your situation for a second and put us in charge of the

Unknown Speaker 40:14
world solution mode. Yeah.

Scott Benner 40:15
How do you fix? Like, how would the world fix this? Is it that the American Diabetes Association steps up and creates CDs or practitioners who are willing to work in mental health situations and offer them to these institutions as pre trained employees? That the then the institution just has to pay, but then the liability still falls in the institution? Is there any way

Whitney 40:46
like how you're thinking it through on the fly?

Unknown Speaker 40:48
Thank you. Um,

Whitney 40:49
so we so my husband and I have taken a couple of meetings with government officials who have asked us the same thing. And from my point of view, I am a development worker, I I don't have the solutions. But we have talked about a couple of options. And the first is what I think y'all are doing here and your community is doing education. It is not the diabetes in the 1960s. It is the diabetes of 2020. We are not talking about finger sticks necessarily every hour, we are not talking about the diabetes as you know it. And that's been my primary yellow, I'll talk to even the doctors at these facilities. And they're like, well, we don't have the ability to do finger sticks every hour. And I'll be like, well, he is a Dexcom You don't need to

Scott Benner 41:34
also every hour.

Unknown Speaker 41:36
I yeah, I do I look at her.

Scott Benner 41:38
That's a hospital protocol, though.

Whitney 41:40
Yeah. 100%. Yeah. Um, and they would, they would say things like, Well, how do we monitor overnight? We don't have the capability for that. I was like the same way I do. You put an alarm on his phone that goes off. And there you go. And the things that us as parents of diet type one diabetics, we creatively come up with with no medical background, all these experts are not thinking outside of the box that are also using an antiquated idea of diabetes. Yeah.

Scott Benner 42:10
The problem they're trying to solve isn't even the problem in front of them.

Whitney 42:14
No, not at all. The problem they're trying to solve is I said, 1960s. Probably 1980s is probably a better take on what diabetes is like most of these places. When I said the letters, CGM didn't know what I was talking about. No, no, I've

Scott Benner 42:27
I've seen I've seen people who should definitely understand some diabetes stuff that don't don't know it. Not this is pretty far removed from the people I'm thinking of even so it's not a it's not a surprise.

Whitney 42:39
No, I know, it's not uncommon. And it's not even uncommon for people who have diabetes knowledge to not even know all of these things. But for me, this is how I started diabetes. You know, my son came, the phrase I use is, it was the Dexcom was a gift with purchase. He had a Dexcom on when I adopted him. And

Scott Benner 43:01
everyone who takes a boy today gets a free three, by the way.

Whitney 43:08
Yeah, everyone after that, you need to get some insurance. But actually, he came with a couple extras. But anyway, um, the the the management side for me was always technology based. So I never had to do the other things that in the past other parents have do. So I'm looking at only in and we were using the pins as well. So for me, I've never done an injection. I've never done life without a CGM, except for that brief period of time the Dexcom went down, and I was freaking out, because that was the only time I didn't have readings. Yeah.

Scott Benner 43:40
Well, I would, I would assume that most people coming into their doors are not going to be offering continuous glucose monitoring systems and things like that. So I can understand their I understand their concern, I can even understand them saying, look, we don't have the infrastructure to handle this or the knowledge. But How hard would it be to add that infrastructure in the in the in terms of a person who would manage it? Maybe you need a couple right? And maybe it's a three person hire, and then all of a sudden you're an institution that can take people with diabetes and do it well and you become gold standard for that. And I mean, if we're gonna think of it in a business situation, there are obviously a lot of kids with mental health issues who have Type One Diabetes that need help you could be the you could be the place for that

Whitney 44:28
you could be the it the the the hip, new place, you know, but thinking

Scott Benner 44:31
about it from a business standpoint, I guess there's no shortage of people who need the place. So why not just weed out the ones who are more difficult to help?

Whitney 44:39
Well, and it's not more difficult. It's a a liability in terms of death. We're talking about it, you know, they have children who are hard to care for, and that's different. But here isn't a kid that could be insulin overload or could have an incredible high on our watch. How can we do that? So one of the things actually Medicaid was doing was telling these people, we will work with you, we will provide you the funds to be able to manage it and they just weren't interested.

Scott Benner 45:12
And well, then you're random. That's, that's a human failing because you we can gather up 1000 people in 1000 different walks of life and explain to them how today we're going to give them something extra to do at work. Would you like? it'll really help somebody and they're going to go, No, because I'm stretched to my end already. Everybody, no, listen, if you're going to work every day, and feeling like huh, this is super easy. I could probably take on more. I just won't tell anybody. You're in the minority. If you're thinking mostly our 100% agree, I watched my wife work for 16 hours in a row yesterday, which by the way, the lockdown has been terrible for people who are very busy and have an incredible work ethic. Because you can't, you know, we used to talk about all the time, like, Oh, you, you know, when I work from home, I skipped lunch, or I do this, my wife gets up, takes a shower, goes sits down and gets up and goes to bed. Because she's trying to she's trying to make sure that a COVID vaccine is safe. So she's here she's really busy. And, and, but she can't stop. Like I'm like, just pick a date, like a time. Just see five o'clock. Not gonna work past five o'clock. She's like, Okay, and then it's seven. I'm like, hey, it's seven. She's like, I know I'm almost done. And then 11 last night, she was I just thought you should write this email,

Unknown Speaker 46:33
I get this email out, then.

Scott Benner 46:34
It'd be all set. I was like, you know, when you die, I told her. I said, when you die, when you die from this. I'm gonna take the insurance money, you're gonna lose 20 pounds. And I'm gonna find a tardy lady to come be the kids mom. Just so you know.

Unknown Speaker 46:51
Oh, my goodness. Not

Scott Benner 46:52
gonna be all workI like you are. The world. Yeah, now that we've got your insurance money, I'm gonna really lighten up on this trying to fix the planet. But no, I mean, but seriously, like, No,

Whitney 47:04
I don't you mean about taking on more? Yeah. But if these you have to remember the mandate of these places, other than the fact that you have to look at them as business making places, of course, they have to make profit, they have to turn revenue, but they're at inherent in their mission is to help kids in need. Right. And we are looking at in though I know it's it's not common. But my husband ran into one of these facilities that explicitly wrote on the website that we adhere to the American Disabilities Act. We take kids that are blind, we take kids that are in wheelchairs, we take kids that are deaf. So then my husband said, well, you're not doing that this is part of the a DA, and they still said, No, you know that I do believe the answer was that information is old. I'm like, okay, we

Scott Benner 47:54
don't have an IT guy to fix that offline, because I don't know how

Whitney 47:59
we no longer you know, support those people. My bad. Yeah. I mean, it was just jaw dropping. And behind all of this is the immediacy. Right? And it's the immediacy that every parent feels, and I don't want to share other people's feelings, other people's experiences, but you're looking at kids who have issues.

Unknown Speaker 48:21
Are we talking?

Whitney 48:22
Oh, husband's has made an appearance?

Scott Benner 48:25
It's opening a window.

Unknown Speaker 48:27
Door. Oh, no, no, there's a dog too.

Scott Benner 48:30
Oh, yeah. The dog got laid out. I understand. Yeah.

Unknown Speaker 48:32
So there is

Whitney 48:36
kids who have immediate needs. I mean, we are, you know, suicides, one of the major problems. And if you're looking at a kid who's diabetic, who's dealing with all sorts of problems, and hypothetically, if a kid was newly diabetic and not handling all of that, well, there's no immediate way to face and get the help you need as a parent. These type of situations for a parent, you lose the reins completely. Yeah. And once your reins are lost, you can't get your get your kid what you need, I'm going to start crying, that's gonna be great for your podcast. I

Scott Benner 49:10
do like, people cry.

Whitney 49:12
I'm trying to I'm pulling it in pulling it in. You can't get your kid to help you need but it's an immediate need. Right? You're really at the discretion of these places. And the The other reason I, I did push you to come on now is COVID is another stressor here. Yeah, you're seeing kids who don't have access to their networks, who don't have the ability to interact with their friends. And all the mental health facilities in the United States are really at high levels because of the you know, because of COVID. And they also have protocols and then it's also interesting, so for instance, we can't visit him.

Scott Benner 49:50
Yeah, well, yeah, I didn't think

Whitney 49:52
and we can't, can't do the home trials that you normally would do in these cases because of COVID.

Scott Benner 49:59
And so this also reinforces his consideration that you are going to abandon at some point. Sorry,

Unknown Speaker 50:06
call my mom buttons, I'll

Scott Benner 50:08
get you to cry if I know if I

Whitney 50:10
know you're trying to make me cry. I just know what 100%. And we keep saying that to him. Because you know, how do you say this is different than what your biological parents did? I mean, how do I convey to him that I'm here, I'm I. But what we use is with him, we use this the the skill, I had to say, I don't have the skills to do this. Your biological parents didn't have the skills to do this. I'm not giving up. I'm still here. We do phone calls daily, we do what we can. But we're not going anywhere. We just aren't experts. And I can't get you the help you need we have you in my house because I'm too early. And one of the things we kept saying is, we're so exhausted by the tantrums, that we can't then try to build that bond and build the love to have fun.

Scott Benner 51:05
I have a question. Does he know that being around him is difficult?

Whitney 51:13
That's a good question. Um, I think he knows he has problems. He knows his problems are bad. But he is very adamant that he's a normal kid. So I don't think he realizes that it makes it difficult to all live together. The one point I think in our most recent meeting, we were able to drive home to him that he really understood was the effects it was having on his little brother. Okay. That was the first time I think he had like, like, you know, I have a black eye doesn't really mean something to him. But what I was able to say, Your brother is constantly upset. I think he got it a little bit more. But overall, there's no he thinks he's perfect. He thinks he's amazing, which is great, because that's a good you know, about self confidence is a great skill to have later in life. But right now, it's not helpful in the admitting you have a problem point of view.

Scott Benner 52:12
So as you're talking, I mean, I'm, I'm sure other people are putting together the, you know, the pieces here. We're specifically speaking about the trouble that you had get seeking out mental health, help long term residential mental health help for someone who has type one diabetes, but really, this is a this is the same as everything else. It's a healthcare problem.

Unknown Speaker 52:35
100% Yeah, yeah, it's

Scott Benner 52:37
just it's exactly what it is. There are countless homeless people who have mental health issues, who are homeless, because at some point, the system says, No, I'm not going to help you. No, I'm not going to help you. Oh, you don't have the right insurance. You don't have enough money. You don't have anything. Get out of here. Get out of here, get out of here. And one day, they just give up and go sit on a bench. And that's the 100% Yeah.

Whitney 52:57
But you know, you have a diabetes podcast, so I thought

Scott Benner 53:03
I'd talk about it.

Whitney 53:05
Um, but I will say this, like, all these parents are just the desperation is is so saddening that we all just want what's best for our kids. And not being able to get what's best for my kid was infuriating. I will, I will step back and say in terms of the mental health once we got him Medicaid, which was its own process. The AR n Taylor at BlueCross, BlueShield. She was amazing. And our Medicaid representative, these people really did help. Yeah. And they did what they could and they were awesome and amazing. Following up, they still do. I think I'm closer to these people than my friends right now giving COVID-19

Scott Benner 53:48
Shannon Taylor out a couple of times.

Whitney 53:52
Or it'll be like, Hey, hey, wait, Taylor's on the front. Oh, tell her Hi, what's up, you know, these are just our peeps. And everybody was trying and just to see this blanket problem that they all felt. And I just didn't know what to do. Like there was no solution. We other than eventually getting this variance. So because he was too young. That was why he originally wasn't in the long term care at the original hospital. He was 12. And they had a minimum of 13 on their license. But we were able to work with. Let's just say we tapped into our resources with our state senator and with our mayor, Justin Wilson, major shout out and they were able to

Scott Benner 54:40
move that number to 13.

Whitney 54:42
Yes, well, no, no, it was the fact that they were able to get this variance. They were able to do it fast once we identified that that was the problem. But just figuring that out. Like nobody would have said that to us blatant. So

Scott Benner 54:54
here's the thing where we're skipping over to is that you and your husband are a little connected, you're thoughtful and able to pick through multi leveled problems where someone's shooting at you at every level. Yeah, and that a lot of people, no disrespect to a lot of people, but a lot of people couldn't do that they just take the No. And then this turns into a violence situation in the home where eventually someone just doesn't want their genitals defamed one last time and you catch them in the wrong situation, and some kid ends up flying across the room into a wall. And then you have a different problem.

Whitney 55:32
Well, and then not to, oh, I don't care if I do a little bit. But what you're describing the type of individual you're describing was the biological parents of my son, my son,

Scott Benner 55:45
the system was too much for them, they couldn't

Whitney 55:46
figure it out. They couldn't do it. And it was too much. And they they couldn't do it anymore. Yeah. Now, they didn't articulate necessarily the level of the problem, right. Um, but they, there was clearly a lack of ability to handle it,

Scott Benner 56:01
ya know, and that's, listen, that's reasonable. I don't know a lot of people who would be able to handle what you're describing, but I'm just saying that like, hammering through the bureaucracy of it, your job kind of lends to understanding how to do that. And, and that and that everybody has. So we have this little thing at school right now, where one of our teachers is just not performing particularly well, virtually. And it's, and it's not just art, and it's the entirety of the class. That's, that's having the same problem. And, you know, you make the school aware. And then the school's first foray is always to go, well, the children have to try harder. It's always like that. It's like, Well, let me throw up. Let me let me volley the ball back to you. And you're like, Okay, well, they are doing that. Here's how that's happening. This isn't happening here. Some other observations volley back again, then they go, Oh, okay, well, you're gonna make a stronger point and fight back a little bit. I see. And then the ball comes back to you, again, you have to have the nerve and the understanding to keep hitting the ball back to them until they have to catch it and go, right, you're right. This isn't this isn't going the way it should, we'll take care of it. And even once they said, they'll take care of it. There was a caveat at the end of the email that just was like, but you know, we think the kids and the teacher are struggling well, funny, because five emails ago, you didn't think anybody was struggling except the kids. And now you're down to Okay, we see the teacher struggling. So my point is, is that people, institutions, doesn't matter, defend their position, they defend, defend, defend, defend, and if you don't have the wherewithal and the and the, the desire and the nerve and the knowledge of how to fight back. It ends there they go, Hey, stay out, and you go, Okay, and then that's the end of it. Exactly. person to fight back.

Whitney 57:56
And that was where I was really frustrated. And now I apologize. I know, you have a lot of associations. But this is where I got very upset with the a DA and the jdrf. If you want to go ahead, oh, I'm totally going to be because we reached out. And we said just that like we have we need someone to be at our side to be behind us to be holding our hands through this process and saying, no, this kid deserves and has rights. And we reached out to everybody and and it's just not necessarily within their purview. Right. And that's, you know, it's very specific, but but I was under the impression fighting for diabetics rights was in their purview, especially when it comes under the American Disabilities Act. And having that No, just was exhausting. And then just to add to what you were saying, I had to take a month off of work. So we are all working, working virtually. My husband's working for the State Department and me for USAID. And I was in the process of learning Spanish for my job, because we're supposed to move overseas at some point. And I had to stop because it had to be my full time job, trying to get him Medicaid, trying to work with insurance trying to find a place It was my full time job

Scott Benner 59:16
and who can afford that most people know.

Whitney 59:18
Well, and I will say that USAID and the government was really amazing, because when COVID hit I will and I was home, I sat with him, and he sucks the energy. So while I'm trying to do that, while we're trying to do this, it was just it was overwhelming. I have no idea. And my husband and I have said that on more than one occasion when we're speaking to our attorneys when we're speaking to government officials. how someone who isn't us could do this. We don't know

Scott Benner 59:47
what the answer is they can't. And that's part of the plan.

Unknown Speaker 59:52
That's what they hope.

Scott Benner 59:54
It's like when you call your insurance company like hey, I think you're supposed to cover this they go No. Denied and they're Lopez, their hope is that you'll just go Alright, well, I guess I'll put myself on a payment plan and I'll figure this out or, like, they're hoping you'll give up the whole, a lot of the world is based on the hope that everyone will give up. I don't know if anyone's paying attention or not. But you know, it's kind of how things are set up. And it just isn't, like even reaching to Ada or jdrf. I can't even see them saying, We don't do this. But what I don't understand is them not saying Hold on, I bet you we could figure out someone who could help like, so there's, there's got to be a moment where someone along the line says, I'll go above and beyond here and get this straight for you. But it is really what you need. You need someone to go look this because it is a very uncommon thing. You know, it's not like there's, there's not like there's an office somewhere with a mental health professional, who also knows how to handle type one diabetes, who's just sitting there waiting for you to come in? You know what I mean? And it just hasn't happened yet. Right? So it really is, okay, it's an uncommon situation, most people aren't ready for it. But Why doesn't someone step back and say, let's see if we can figure this out instead of No. And, and is that is that a perk is that most people are not, they're put into a job and the job has requirements, and they don't really know, outside of those requirements, is it not wanting to help is it I don't think most people don't want to help, I think they think they don't have the, I don't know what to do here, I don't have the ability to help you. So we don't do this, hoping you'll go to the next person who does except the next person does the same thing. And on and on. And

Whitney 1:01:40
I think it's two things. And this is where my background is a development worker comes out, they don't have the passion or the agency. So they don't feel they can and they don't have the hopes and dreams to make it happen. And that's what makes a parent different than a, you know, regular worker in the sense that they feel empowered to do. So they feel like they have to do it, but they they know they can. So that agency is a really important thing. Now I will say one of the things that we were able to do is because we jumped around to so many places, we did find the Disability Law Center of Virginia. And they started working with us on the next steps from here, and what we can do in the future to fight for this and continuation. This is also the reason why I haven't said any of the names of the facilities. And I've avoided saying my child's name is because we are going to try to make a difference here. It matters to us. And we want to have a future for other kids, because it's important to us. I mean, as I said, I work for a development agency, I want other people to have this pathway. And I stood in the parking lot with a mother with a daughter with type one just crying because of the options available to her. And my kid needs help. But there are lots of other kids who need help. Right.

Scott Benner 1:02:58
And so you're really here just to shed light on this hoping somebody is getting Well,

Whitney 1:03:01
I'm here for a couple of reasons. I'm here because I want other parents who are going through this to know that they have advocates, there are people who are out there fighting. But I'm, as you mentioned, we need ideas, there needs to be more. I don't know I I don't have the solutions. If it was an economic growth in South Sudan, maybe I'd be able to help. But I don't have the ideas. So it's

Scott Benner 1:03:29
someone on the inside has to wanted. Yeah, to say this is this is the pathway to fixing this.

Whitney 1:03:36
And there has to be enough. So that's the other problem. I believe we have enough people who have this problem and understanding that there that I am not the only parent going through this, which I know. But I am positive that there are other just given the nature of what diabetes is it does a number on your mental psyche, right? And if you have loving, caring family to support you, then you do great. But if you don't, then you end up like my son dies. And it's just detrimental.

Scott Benner 1:04:09
Yeah, no kidding. Is his. So do you think that there is help for him that will move him past this place to a better life? Or do you think this is managed lifelong management?

Whitney 1:04:23
Um, another good question. I think he if he is able to tap into understanding what is wrong with him, and being able to manage it, when it does manifest, then he has a great future ahead of him. But if he's not given the skills from experts to get out of it, he's not going to be able to hold it on a job. Cuz there is going to be somebody who says you can't do that today. He's not going to be able to move up in education. Like we have problems with homework, we have problems with studying. These are all concepts that he's not interested in doing. So He's going to float through the system. And we're not sure if so right now his education level is probably closer to that of third grade than sixth grade. Because he's been able to just kind of float without doing the work. Yeah. And I mean, I don't see a world in which he doesn't get the help where he can have a boss. Even if it's just like, somebody who says you have to be here at that time. I don't see it not ending up with screaming expletives. My son screaming expletives that said, boss,

Scott Benner 1:05:32
yeah, don't worry, I'm writing down.

Unknown Speaker 1:05:34
I know when I say it, I caught your writing. Am

Scott Benner 1:05:37
I gonna take it down? Huh? Well, this is terrible.

Whitney 1:05:44
Well, and but in reality, it's a larger problem. Let's let's take a bigger step back from me.

Scott Benner 1:05:50
Yeah, let's so that I don't have a stroke on a Friday afternoon.

Whitney 1:05:56
So if we take a bigger step back, we could we're looking at a systemic misunderstanding of diabetes. And and podcasts like yours really do help the word we're helping ourselves. People who are not diabetic don't. And I don't know your demographics, but I assume don't necessarily tune in if they don't have a family or a loved one. But it's getting past this old view of diabetes, to a general understanding, because I will be honest, we also looked at boarding facilities before we landed on we needed long term mental health. We were looking at schools, just schools, and we hit about 30. Who said no, because of the diabetes as well. So this is not unnecessarily just a long term residential health facility problem. This is a systemic issue of how do we allow these kids to live away from their parents? Now there I reached out prior to his I mean, deciding he needed long term mental health. And I, I put into a couple of Facebook groups. Does anybody have kids in boarding school with type one because I need to look system options because the home life is a problem. Let me tell you how many parents jumped down my throat? Oh, it was a fun response bag.

Scott Benner 1:07:12
About boarding school.

Whitney 1:07:13
Yes. Oh, my God, how could you not have your kid next to you?

Scott Benner 1:07:17
boarding school? I don't know what to tell you.

Unknown Speaker 1:07:20
Lots of kids do.

Whitney 1:07:22
But I mean, I get it. It's a lot of parents can imagine that. But what if you wanted to have that as an option for your kid by a military school? Well, yeah,

Scott Benner 1:07:32
yeah. And not only that, but as prevalence grows around diabetes in general, the system can't. And by the way, the system like at this point, I'm talking about the matrix, like the world, the green letters, the world can't keep ignoring people a diabetes, because the numbers grow. You can't just keep saying, Oh, no, no, no, because at some point, it will turn into a financial situation. At one point, the boarding school is going to say, Hey, we can't fill this place. And we just told 20 kids with diabetes, no. So and so is it really when it becomes a financial imperative for them, then they'll figure out how to handle it? Is that not

Whitney 1:08:12
that? I don't know, they've been presented? Well, because of the mentality I was just talking about where parents not not necessarily prone to like sending their kids out of the house with diabetes. I don't know if they've been presented it very much. But you're right. And they all think that I don't know what I'm talking like, I love how every one of these facilities started. Do you know that there's a type one and type two? And then I'm like, oh, tell me more. You.

Scott Benner 1:08:38
So there's more than one you're saying? Hold on, let me get a hold on. Let me get pen and paper. I don't want to miss what you're saying here.

Whitney 1:08:44
We'd have to count carbohydrate, one carbohydrate.

Scott Benner 1:08:49
There's carbs in it. Almost everything.

Unknown Speaker 1:08:53
Yeah,

Whitney 1:08:54
yeah. Just a fun example of my son. He convinced a bunch of kids that crackers didn't have carbohydrates, and they could sneak them for him. And he'd eat them. So he convinced an entire class of kids that crackers don't have carbohydrate

Scott Benner 1:09:06
isn't hard to confuse people about what carbs Oh, I know.

Unknown Speaker 1:09:11
12 year old.

Whitney 1:09:13
Um, so yeah, so this systemic problem, this larger problem that is a knowledge based problem of larger understanding of what diabetes is how people manage it, how people live with it. And if I don't have the solutions, I don't have legislation, ideas and all these things that might improve the situation in the future. Yeah, I just know there's a need now. There's a gap in in what parents can do and what parents have access to in terms of services, whether it's a school, a behavior adjustment school, or long term residential health facility. The kids aren't getting what they need, and I've got my kid in a place. I don't love the place but I've got my kid in the place and I can breathe a little bit easier. But we met so many people along the way. They're doing what we're doing. And we just I, anybody out there who can, who has ideas, who knows somebody, or who has experienced, you know, let's, let's talk come up for your conversation.

Scott Benner 1:10:14
Well, it does feel like you're gonna have to put together a consortium of people who this impacts

Unknown Speaker 1:10:19
their spare time, right?

Scott Benner 1:10:20
Yeah. While you're, you know, you know, just, you know, like solving

Unknown Speaker 1:10:26
the world's problems, those moments

Scott Benner 1:10:27
where you're just like, Oh, I wish I had something to do. But But yeah, I mean, it seems like they taking you out of it is you need a consortium of people who have the same problem to lobby the right person to make it. I mean, the awareness, you'd have to build first to get support would probably take years. Mm hmm. You know, and, and you, I don't, I think you need an already established organization to want to pick this mantle up. Because starting from scratch would just be I mean, you'd be, you know, you'd be retired at your, you know, when you're finally in the congressman's office, taking the picture going, we fix this. Now, I want to go away, because I, I've lived my life already like it, you need an established organization, like a DA to pick this up, go to their contacts on the government side and say, Look, we don't know what the numbers are here for people who are impacted by this. But these these organizations, if they want federal funding, have got to make provisions for handling people's type one diabetes. To me, that's the most as indirect as that sounds, that's the most direct way to fix it.

Whitney 1:11:40
And that's literally what we pose to different organizations to do that sort of advocacy. And we'll continue to do so. And, you know, we are still taking meetings we are, as I mentioned, before, we are starting our legends are the kind of going after some of these organizations with some attorneys, but ultimately, it's time sensitive. So when a parent isn't this,

Scott Benner 1:12:08
oh, yeah, what I just said isn't gonna help anybody in the Mo,

Unknown Speaker 1:12:11
nobody now. But I mean, and

Scott Benner 1:12:16
you also, I'm assuming have some reasonable finances to support all this, too. And I'm not saying like, I'm looking at you. I'm not saying you look wealthy, I'm just saying it looks like yeah, I'm saying I think I don't think you're struggling to pay for a sandwich is what I'm getting. And but what I my bigger point is, is what about everyone else? Who's who's just paycheck to paycheck or worse? You know, where are they? How are they doing this?

Whitney 1:12:43
So the financial side was actually not easy for us. As I mentioned, we both worked for the government.

Scott Benner 1:12:51
That works

Unknown Speaker 1:12:52
all that well.

Unknown Speaker 1:12:55
But what a waste to being a lawyer.

Unknown Speaker 1:12:59
Doing good work. He's He's we're diplomats. We're doing our thing. Yeah, no,

Scott Benner 1:13:04
I understand. But But

Whitney 1:13:05
what I'm saying is the fact that that we did fight the fight to get him Medicaid, which was a separate fight, which was a separate thing. But once he got Medicaid, a lot of that was able to be paid for, but the school end isn't, so we're still responsible for the school end. We're working with the city on that, like, the steps in this have been mind numbing, like, so we asked, we worked with the city to get a grant for some of his schooling, that process was hard. We had to work with Medicaid. In Virginia, there's a rule that if you're in a mental health facility for 30 days or more, but the clock restarts the moment you step into your house, so it's a whole thing and getting Medicaid for that was a problem. Also, they usually don't do that for kids. So we had to fight for that.

Scott Benner 1:13:52
To be lauded for for seriously, it's, it's a lot I hear people are like, Oh, I had to call my insurance company three times to get my pumps, you know, and they're like, they're at wit's end already.

Unknown Speaker 1:14:03
And I'm doing that. I

Scott Benner 1:14:04
would imagine that's also something you're accomplishing. Is he getting any education right now where he is, right?

Whitney 1:14:10
So this facility does the previous one didn't? This one does. It's not like,

Scott Benner 1:14:17
it's not there. It's not like being at Harvard or anything like that.

Whitney 1:14:20
But I mean, it's not even at the level of a regular public school, but it is schooling and we respect and appreciate what they are doing for him. But the side that we need is okay, but you got to push it. He's got to be he really, he needs to be pushed, because if he's not pushed, he's not gonna melt down. If he doesn't melt down, then he's not gonna get the help he needs. So I don't know if this type of curriculum will give him that kind of push, but

Scott Benner 1:14:45
like they need to see him in his in all this glory, so they don't know

Whitney 1:14:50
and the glorious curse words and the glorious flailing of the arms. Yes. And that's actually a major concern for us. So we did have a call from the placement like he's really Well be Hey, guys, let me send you some videos. I got this. I got

Scott Benner 1:15:04
the video probably helped them.

Whitney 1:15:06
Oh yeah, but it helps them understand and but they do see other things he ruminates on other things, he does have other things that that come out like, he's obsessed with the weather, which is great. But there's only so many times you can be told the temperature outside before wanting to pull your hair out.

Unknown Speaker 1:15:22
It's like I can just walk outside. So

Scott Benner 1:15:24
he's obsessed. So he tells you, he'll continually tell you what the temperature is

Whitney 1:15:29
the temperature for the next 25 days. Oh, and then the temperature of grandma's house the next 25 days. And then temperature in his house for the next 45 days

Scott Benner 1:15:36
is like imagine if Siri told you things you don't care about?

Whitney 1:15:40
On a constant loop. Yeah. But I mean, once again, this is an interest we love him. We Yeah, we we tried to bolster it. We took them to a meteorologist in Key West and we got to launch a weather balloon, like we're trying to cater to his hobbies, but at the end of the day, it's also a rumination problem.

Scott Benner 1:15:58
Right. I would imagine if he also wasn't cursing at me during that it might just be a thing that he does. Rather constantly. I wish he wouldn't call me a filthy while he was doing it, though, like

Whitney 1:16:13
filthy would have gone there. I think it would be something a lot worse. The first ones go together.

Scott Benner 1:16:18
I was cleaning it up. Like my guesses are not nearly as clean as what I've said out loud, just so you

Whitney 1:16:23
know. Yeah. It's It's It's very creative. But the bigger problem or the other things he was saying like you're killing me, you're starving me to death, because he hasn't eaten in four hours. Right? I did try to explain what starving meant that that didn't.

Scott Benner 1:16:38
He's not looking for that interpretation from know

Whitney 1:16:40
the truth, man. But at the end of the day, it's just getting awareness about what the reality is of diabetes, what it's like to have a type one. I mean, let's be honest, is I did it again, my son is you're sorry, a lot of bleep people is fully a cyborg. He has the Omni pod. He has the CGM. He has everything easy. Nobody has to really do anything for him, except for punch some numbers and then receiver. But that explaining how easy it was, I didn't even get to that point with these organizations. So it was mind numbing.

Scott Benner 1:17:18
Well, listen, I've spoken to people who's who they or their children have diabetes for years. And it's hard to make them understand it. So yeah, no, I really don't know how I would even go about and it would take a special person to, in a short amount of time make it seem doable. Yeah.

Whitney 1:17:40
and easy. That's the problem is making it sound really easy.

Scott Benner 1:17:46
You're also not expecting him to keep his blood sugar at 85. All day, right?

Unknown Speaker 1:17:49
No, I

Whitney 1:17:49
please, if we can be under 200. My life is good. He'd be thrilled.

Scott Benner 1:17:53
All right. Is there anything we didn't cover that you wanted to get out? there anything else you want to force me to do?

Unknown Speaker 1:18:01
I'm just kidding. No,

Whitney 1:18:01
I come off really bad. And as I mean, I know I didn't want to thank you, though, because one of the resources I was able to do and because you did put the podcast though, this is where naming your podcasts would be a little bit more helpful. When there was an issue at home having an external person, or podcast, explain something like water. Ah, Jenny's explanation of water helped me so much when he wasn't drinking, and I couldn't get his sugar's down, and I just popped on her podcasts. Listen, someone else is gonna tell you how I explain it

Scott Benner 1:18:37
to you. Oh, Jenny would like to hear that. Also, you'll be happy to know that a small band of dedicated listeners have come together. They have created a spreadsheet of topics and ideas and thoughts and words and keywords. They're going to go back and re listen to the entire show, and put together a better synopsis for the show. And I just want you all to understand your hate that no, I'm happy. It's fine. It's everyone needs to understand that at this point. I don't think I've ever said this out loud on the recording, but this show is in the top 8% of all podcasts on Apple podcasts. So have yourself on the back. No, no, no. And, and most of those other shows have producers and editors and Booker's and I have me. So I, I book it, I record it. I edited it. I put it up, I support it on social media. And I don't have the wherewithal to write a dedicated synopsis because the other thing is is that I am in like our conversation right now. I feel like my job is to listen to you ask questions that need to be asked that are in the minds of the people listening and that you need to have it Ask. And I'm lost in this conversation. But if we stopped recording right now, and you asked me what we talked about, I may not know. And so then when I go back again, as the editor, I'm not listening for content still, I'm editing, I'm listening for noises. You know, did someone say their name when they said they didn't want it said, you know, did someone curse, you know, like, like, and so now I listened through it for that. And I try to imagine at this point, I've got the time back and forth with you and email, my understanding of what we're going to talk about this recording time, the editing time, then the processing time, the posting time, this is when I like when, like, because I got to do the next one. I understand. So I'm not, I'm just because we're talking about batching I'm gonna do it sometime. I'm gonna go back two weeks. 1-234-567-8910. I've recorded 12 times in the last two weeks.

Whitney 1:21:08
That's impressive. And it shows you that you have you know, you're trying to address all the issues. But let me tell you, sir, there are these things that in the government, we've learned about that. It may be time they're called interns. Yeah. I don't

Scott Benner 1:21:21
like other people being involved in my thing.

Whitney 1:21:23
That's a huge problem. And that's a thing you need to like, go Oh,

Scott Benner 1:21:28
I know, it sounds like that. But and but do you like the podcast?

Whitney 1:21:34
Oh, I do. I Yes, of course I am. I will say this that I everybody I meet that we talk about diabetes is first one of the first things I say I explain that, you know, you get a lot of information. So as someone who was handed for all intensive purposes, a type one, a T one D and said here, take care of this starting now. I got some information, we got a 30 minute training. That's what we got from his endo. And I told you, my husband and I read all the books. And I know that but that doesn't give you any real life. So working and listening through all your tips, and especially the stuff on basil. Really, and but we did have all the fights that you described between the mom and the dad. He's not a doctor. He's a podcast guy. We had all that too. But

Scott Benner 1:22:23
ultimately would have that fight too, by the way. Yeah, I listened to other podcasts. And I'm constantly thinking, should I really be listening to this idiot? But, but my point is, is that it's a good podcast. And it's to some point, it's my aesthetic. I don't even know how to put that exactly. But if I start bringing other people into it, it's not gonna be what it is now. And then it might not work. And I can't take that risk. Because if I'm being 100% honest with you, I don't really know why it works now.

Whitney 1:22:53
Well, actually, it's because you, you speak the reality. And that's probably why I was like, this is how I need to do this. This is how I need to talk about it. Because you you break it down into real terms. And you're not just kind of saying what everybody wants to hear, you're breaking it down into reality, though, you know, social media, you know, there's several 14 year olds out there who might be able to do it better.

Scott Benner 1:23:18
I honestly, I have to be honest with the social media part of it, I almost don't care about, I think not how it's not how podcasts grow, they grow. So here if you want better, a synopsis for the podcast, and everyone listening, subscribe in your player. Listen to the episodes when you need a pump or CGM or something like that. Use the advertiser links and then tell to other people about the show. We can grow the show to a point where I could afford to get somebody to edit it. We're just not there yet. Yeah, I can't like give away my car payment for this. Hey, Scott, what happened? Yeah, we have an editor now. Everything's so much easier. I walk everywhere.

Whitney 1:24:01
I haven't, I'm happy as is. I know that you you started by saying I bullied my way on.

Unknown Speaker 1:24:08
Let me be clear.

Whitney 1:24:10
No, it's okay. It's just that the issue. It has such immediacy to me, because of will and I will say because of COVID. This is a huge problem with these facilities. But to a parent whose kid is not in the best place. There's immediacy.

Scott Benner 1:24:27
No, I wanted it. Listen, let me be final stop being funny for a second. We're trying to be funny. I just every time I say something like that, I imagine someone listening. Oh, you're trying to be funny. It's not working. But you are passionate. You're in a dire situation. You were really well spoken and well educated about what you want to talk about. I absolutely wanted to have you on. But you contacted me in a party like right now when people contact me right now. They're getting dates in March and April 2021 to record it. Because I'm done. Like I just I just overpacked by October so that I can have Christmas for myself personally. And so that by the way, I can do a lot of back ground stuff for the podcast that you don't expect, like, like the like the episode synopsis project, which 16 lovely people who are listening to this show are working on really hard right now. And I'm in the middle of putting transcripts in every episode on my side. And that's like, that's a lot of work. So on days, when I have to dedicate myself to that I can't be recording or putting up shows like there's a show that's gonna go up in three hours that I put together a week ago. And that's uncommon for me, most of the time, I finish an edit and the show goes out within like 36 hours. So that's even me trying to be you know, more on top of things, but I also have kids in a family and my whole family's living. Listen, I can't take this now. I'm just ends because witness came on. No, no, I'm it No, but seriously, like, I really wanted to do what you're doing, which is how I figured out how to get you here, because I wanted to do it. And I didn't think you were gonna do a great job. And I do think you did.

Whitney 1:26:08
So. Um, but you know, this is one of those places where those 16 people have an opportunity to do you know, another project. This is where writing your congressman and telling them about the discrimination that the diabetic community could really

Scott Benner 1:26:21
help? Well, I'll say this, if you put together a thoughtful blog post about it with a form letter, I'd put a blog for you. Okay,

Whitney 1:26:34
that's that, that you're giving me a project? Okay.

Scott Benner 1:26:39
They told me to get an intern, you're my intern now.

Unknown Speaker 1:26:43
I'm not 14.

Whitney 1:26:46
But the Yeah, not 14. But no, you're right. It is something we're looking into. And but we don't know who else is out there. And we don't know who else is interested in this. I mean, we are still reaching out. One of the things that was interesting this week, given the state of the world affairs is Mark Warner pota, I senator in Virginia put out an advertisement where he started by saying my daughter is a type one diabetic. And I was like, let's send him an email.

Scott Benner 1:27:09
And where to start then?

Unknown Speaker 1:27:11
Yeah. So like it was,

Whitney 1:27:13
that's what we've been doing. And we're advocating we're advocating while at the same time trying to get our son the help he needs. And so

Scott Benner 1:27:20
you're in the Facebook group. I know that because yeah, that already. Why don't when your episode goes up, which I'll pull up soon. All right. And what's November? Well, no, no, no, no. Although I have to tell you, it would be June if you were on the regular schedule. But I'll put it up soon. And I'll make a post in the private Facebook group about this episode. And if anyone listening wants to find Whitney, you should go there to that, that post that try to find Does that make sense?

Unknown Speaker 1:27:51
Yep.

Whitney 1:27:52
Works for me. And you could also I mean, I think there are back posts where I posted about the issue as well just search for my name. And yeah, I very, I participate in the group and I'm clearly vocal. So if you need someone to represent you, my husband and I use our words wisely. And we've learned how to curse in such an amazing way that that's a secondary skill.

Scott Benner 1:28:15
You guys want to get together privately and call each other? The word you absolutely can.

Whitney 1:28:20
Oh, yeah, that's a huge one.

Unknown Speaker 1:28:22
Oh, he was good with that one. Oh, that

Unknown Speaker 1:28:24
one's a good one.

Whitney 1:28:26
I don't think he knows what it means right? 90% sure he does, and I'm not gonna teach him it.

Unknown Speaker 1:28:32
I do. Imagine if you were like, hey, just I'm gonna write all these curse words down you explain them all to me and your

Whitney 1:28:39
you want them to know how to use them correctly.

Scott Benner 1:28:41
You don't want to throw them around wrong, that's for sure. Yeah, I

Whitney 1:28:43
mean, the little one you know when he accidentally says one when he dropped something. I'm just happy if it's right. But no, we did have to explain a couple to get them out of their vernacular but otherwise

Scott Benner 1:28:57
All right. Well, my wife says that when I um I just got a text that said when I throw away all of our old spices I throw away her nutmeg and she needs it right now and she's very upset so apparently out of the store

Whitney 1:29:07
awesome cuz I literally have to go buy nutmeg to what are we making? I don't know. But literally, I just sold my told my husband. Pumpkin Spice is not not big.

Scott Benner 1:29:18
I can't believe that that in any way connected with you.

Whitney 1:29:23
But yeah, yeah. So let's go get nutmeg, and call it this pumpkin spice season. Cool. All right.

Scott Benner 1:29:29
Well, listen. If you love the cello, Alyssa Wyler Stein's on the show this afternoon. Don't miss it.

Unknown Speaker 1:29:35
I'll definitely tune in really good.

Scott Benner 1:29:40
Hey, Well, how about a huge thanks to Whitney for coming on the show, and sharing all that's going on in her family's life. Really, really kind of eye opening and thought provoking. There's going to be a post in the private Facebook group for the podcast about this episode. And if you want to connect that's where you can Do it. That's Juicebox Podcast, Type One Diabetes on Facebook. It's a private group. So you have to answer a couple questions to get in. But then after you're in, you're in and that's that. Let me thank some people. Thank you Dexcom, makers of the G6 continuous glucose monitor. Thank you touched by type one. And a huge thank you to one of today's sponsors. Gvoke Glucagon, find out more about Gvoke HypoPen at Gvokeglucagon.com/juicebox you spell that GVOKE gL use C AG, o n.com. forward slash juicebox. Thanks so much for listening for supporting the show by sharing it with others and all the great things that you guys do to get behind the Juicebox Podcast. I'll be back soon with another episode.

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