brooke jill group homesFINAL

Jill Woodworth55min

Jill Woodworth

00:00

So yeah, so we've got Brooke, Alicia here. And this is kind of a continuation of a podcast that we did, I believe it was in June discussing, we both have daughters that have Tuberous sclerosis complex, which is a genetic condition that causes benign tumors to grow on different organs of the body. And Brooke also has TSC. And one of the issues with tsp issues, or one of the things you should always it's very variable. So people are impacted differently. And as you well know, I have I have offspring with TSC. So each, each of those, each of my offspring are affected differently. And so we're going to talk a little bit about our daughters, and, you know, the situation that they some of the challenges that they've they've had personally and trying to get them to, you know, to have a life to have a quality of life and what, you know, each of each of us have had different, you know, different presentations. But in TSC Some things are, you know, universal. So anyway, so here I have Brooke and Brooke, as I said, TSC mom, she's also a hairstylist, and she is an advocate for she's worked with the TS Alliance, doing a lot of advocacy for them. And she also is a top notch, I don't know whether you call yourself marketer salesperson for thrive ,she lives it, uses this thrive supplement, and they have really had an impact on her quality of life. So we're going to talk about all that. So I'm going to kick it over to Brooke, I think I had a little intro here. Oh, I was gonna say, yeah, we've done our best to advocate and support our daughters, we've had to make tough decisions, lean on mental health services to keep them safe, preserve our own safety. And sometimes these choices are sorely inadequate. Sometimes our resources run out before we can get our loved ones into a situation where they can take advantage of supports and services and start to forge their own lives. Sometimes group homes are a good option, and ideally should be a good option for more. But again, we are dependent, or they're dependent on funding and disconnects between providers and often not able to implement and implement enough surrounding support services that would enable individuals to be more successful learn from the group home living situation and move into a less restrictive environment. So, you know, I think my point is that I think they can work. I think there's a lot of challenges. So Brooke, why don't you go ahead and give me a little bit of your background and talk about your experience.

Brooke Alisha

02:28

Okay, I know this is part two. So if you watch part one, you can hear a lot. I mean, we could reshare that somewhere. So speaking on that I was diagnosed at 18 with TSC. And I had kidney tumors, basically was dealing with a lot of kidney stones, urinary tract infections, that type of thing at the age of like, 17 ish, probably a little bit after my hormones got to use, you know, used to my body, and were like, Hey, we're not gonna let you do life anymore. I was a cheerleader I skater, singer traveling singing group for a Christian. It was called Youth for Christ, stuff like that. I was very, very involved in a lot of things. So for me to be told at 18 I be in the wheelchair by the age of 30 was very detrimental to my mental health. Being told I could never have children. If I did, my body would fight the fetus off. So I just gave up and like, honestly, I was in Darvocet in the basement, and like watch real world and just said My mind was just junk. Because I just like might as well live vicariously through someone else. Since I can't leave my basement. Moving on, I ended up getting pregnant have a daughter with Tuberous sclerosis complex your directory, I was told that basically, you should have an abortion because your body will fight the fetus off anyways. But for me, I chose not to everybody has a different view on that. And that's fine. But that's something I wanted to have to live with. And then having her she was good for about the first four months. And you know, it's just, it's a whole long story when you have to see and I could break down every single little bit of our lives. But I then was pregnant for my son after she started seizing and went to Canada for infantile spasms. I mean, if you I know we've all been through a different differently. We're on a different boat, Jill has different stories with her children that I'll have with rain. But listen, that boat was sinking, I didn't have a way out diastolic was every night we had 13 different medications, which leads lead to brain surgery. And I'm like, well, maybe the doctors were right. Maybe I you know, I didn't know what I was getting into. I was not affected that way. It was my kidney. So I didn't have that loss of functional life. And then I wasn't able to do things and never had anyone ever told me that I couldn't do anything until 18. But when someone tells you can't do something for me, it changed my mind. It changed our mindset to autoplay while I can have dogs and travel and whatever happens happens. But I was young, I wasn't in the mindset. You know, my kids, my friends were in college and I was like, jealous of them because I couldn't just go out and drink and have fun I would drink and then end up with antibiotics for 30 days so I couldn't like live that you know, let's get it out of your system like because I was trying to just live I had people asking me Are you gonna die like they didn't really understand to disclose this. Nobody really got it but nobody also wanted do include you because they're also scared to ask you. And it's this whole type of loneliness that you go through when you're diagnosed and your child's diagnosed. And it could be parents that have gone through different things, if you have cancer or different things, it's just a really lonely place. Because nobody knows what to say. And I don't blame anybody, I wouldn't have known what to say, what it was just a very solitude place that you get yourself in, and then, you know, you go on through life, and then you realize you have to if you're lost, you plug in, and then you start digging into advocacy. And I didn't want to be a part of it, I didn't want to be part of the TS Alliance, the beginning, I didn't want to know what my life was going to look like, I was scared, because there are so many different variables, like Jill said, and I was just in fear of like, what's coming, I don't want to know what's coming, I'm more afraid to know what's coming, because this is bad enough, you know. So you just kind of go through life. And then you're like, wait, I got told I had four and a half centimeter tumors that I had to go on dialysis, or that my body was going to shut down, I'm like, crap, they're right, I'm going to be in a wheelchair with age of 30. So I said, I have to dig in, I have to do this drug trial, I have to move forward. And then I just jumped, I jumped with everything in with all fear involved, but I knew that I couldn't be an effective parent on dialysis, or having radiation, when that wouldn't even help the tuber sclerosis, you know, go away, it was just kind of come back. So moving on, I just became a huge advocate, I paid for myself to go down there because I wanted this so bad. And then I got involved with adult regional coordinators, I'm a regional have five states now. And I'm glad because I feel like I can help my child if I'm not plugged in. But I also know more of the resources and stuff that's just kind of like the basis on where where I ended up and how I got involved in the GSE community and advocating so

Jill Woodworth

06:40

Yeah, and I think that's perfect. And I you know, every time I hear you explain, that seems like to me, you need to get to that place where you really start to own it yourself, and you realize that nobody's going to save you, even if you're a parent, you know, the system is set up, is not going to support you, they're not going to they'll people will help you. And there's wonderful people along the way, but you're running the show, you know, and and that I think, is really a good example of that once you started to own it, and just, you know, kind of face it. Everything shifted, even though I know it's been a huge struggle. And it I think our lives are, you know, often very challenging, but there's also really wonderful things too. So, right, right, I wanted to ask to have you talk a little bit about brain now I, my daughter right now is in a group home, and we just we she was in a adult foster care, now it was shared living situation, which is a little bit less restrictive. And that's where at the time that we placed her that we thought that she might have the chance to do well, and kind of what we found out was that it feels like and I know you'll be able to relate to this, you're in this race, you're trying to give your kid as many skills or as much support. So when they if they do go on to a more independent situation, they're able to grasp those supports. And I think what you know, in a lot of ways, it's been a learning experience, because in some ways her skills are up here, and she had other skills down here. And ultimately, you get kind of pushed down a little bit when you in order to kind of work within the systems. And the opportunities start to diminish a little bit. And you know, her mental health kind of, because that wasn't really addressed, if you don't address the full package of the human being that we have, you know, their mental health, their physical health, their spiritual, their emotional health, all of that. And one thing's really out of balance, and they're in a stressful situation, it's easy for me to look back and see why things were were hard for her. And so ultimately, she ended up in a group home in between having these mental health crisis over this summer, which really was TSC, the TAND, which any of you watching is the behavioral component that is very frequent with a TST diagnosis and is is basically covers the entire mental health spectrum anyways, they didn't really know how to how to address her issues. So ultimately, she's she ended up in a group home. And, you know, I think along the way, what has stood out to me is the amazing people that are involved, and that really do care. And they're working within a broken system and they know it and you know, I that takes a lot of courage and and then as a parent, it's it's learning to be the squeaky wheel and learning who to talk to and just kind of hanging on loosely, because you are going to lose some control. And that's one thing I'll mention, I want to give Brooke a chance to talk about your experience. You had some issues where your daughter was having some I don't know if you wanted to talk about that, but I'm going to bounce it back to you.

Brooke Alisha

09:45

Yeah, so I met Joe randomly. And I learned so much from someone I never met in my entire life. But she has three kids with us and I guess I really started to realize in 2018 when I was struggling before This whole journey or what I was talking about the nutritional health and stuff, I was struggling to be president, I was struggling to stay ahead of the TSC. If that's even possible. I feel like at least if I'm not running behind it, I'm running with it now. But when I did that I got green and SSA because we were struggling with she was consistently inconsistent like what you're saying with Mary Ellen, you know, as far as like she's here, some, some places, but also here, and so you have to figure out how to connect that, but also like, know what she needs. And when I filled out the SSA stuff, me having TSC also, I hate tests, I hate packets. I hate all of that stuff, because I have to relive everything from you know, everything a neuro psych evaluation, I'm like, do we have to, and there's stuff that I feel like as parents that we push aside so we don't have to relive it. I'm realizing some things now like having PTSD from things that I went through. I didn't realize till now till I'm put in situations and I'm like, crap, where's that coming from? You know, so some A lot of it was just, I don't want to deal with it. I didn't want to rehash it. And we tell somebody, so I took control, so I could just control it, then you're limited on what your resources are going to be. So we went to like therapy three days a week, she had a personal therapy, a family counselor than our brother. We were in this like whole group for 18 months. And they helped me fill out the paper, they were very helpful with like getting her social security and all that stuff. When I started a plug in, but looking back two and a half years later, after I started that journey, redoing the assessments, getting another neuro psych, you know, all of this stuff, I had to realize that it wasn't enough for them to just look at rain and say she needs help, they had to see everything on paper. Thankfully, we I used to work for a group home because when rain was younger, and I'm like, Okay, this might be my daughter's life sometime. And I want to know what it's like inside. I was like, I want to put

Jill Woodworth

11:42

myself like that's pretty admirable that you did that because I don't

Brooke Alisha

11:46

even realize why I did it. But I knew the lady and actually that's where rain goes a day have now and she got approved for 6000 hours through the state. Finally, a teacher and adaptive school learning a grant that you get a john Patterson grant, like I had to dig I had to know other mothers, I had to see people that were searching for what I was searching, but it took two years to get that care. And I felt like in all the meantime my son's like, I tried to get him into a mentoring thing. And he was getting ignored. And you know, it's hard when you have a child that like, and I want to talk about this when you have a child that can is capable of doing mostly everything themselves. My son is a genius he gets maybe sports out pandemic gets always self sufficient, knows how to brush his teeth, do his hair, he shows up comes downstairs, he's ready to go like, honestly, it's like he's a plant, you need to water on feet on like we're good. But it's so weird because I was so worried to not affect his life so badly that I wasn't asking him how he felt. And then he just feels like so neglected that I just don't even say like, I know you're doing your work. He's like, Yeah, but it would be nice. We had this talk today, he's like, it'd be nice for you just to ask me. And I get that because I'm a very independent oldest of a child. And nobody has to ask me if I need help, because I figure it out myself. However, it would still be nice to know that you're like, hey, do you need something. So moving on to what you said, we ended up with really bad behaviors, put cameras in our home to protect ourselves, she was making up rumors that weren't real. I had to literally tell people I didn't want to tell just to protect ourselves things that I couldn't imagine your own child saying ever about you or about people in your home. But I had the cops basically said you have to protect yourself. So she ended up in a psych ward in June. And that was the most debilitating day of my entire life more than brain surgery. More than anything, but I knew to help her I had to let her go. And I guess where I'm coming of this. If you want a village you need to be the village to. So I realized that I can't do this alone. No one can do anything alone. I can't be an amazing hairdresser by myself. I can't be an amazing entrepreneur by myself. I can't be an amazing advocate by myself. I needed to let go of that control that I had to hold on to because I felt like when you have to see you have nothing left helping you anymore. Like everything that's happening to my tumors, my kidneys, my body, I have no control over. But I had control over that. And for some reason like that I could control that area, that environment. It was out of control because I was trying to do it alone and I don't have the resources by myself to be able to help my child succeed in life. Now she's out day half our days a week living her best life. She does go to school two days we have worked it out through this pandemic transition like she can go to school a couple of days and then there three days, but she's living her best life. She's happier. And you know what, I've had a lot of go I've had a lot of other people like raise my child not really but I've had to realize like I deserve a life too. And that took a long time and I know Joel is kind of there to like, what part of advocating like a mother you know they say advocate a mother but also like what point is it that you can do better for your child's life if you are not taking all the pressure for you just you like it is not up to you to control I don't know children what I'm

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