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Growing Up With A Brain Injury: A Caregiver And Her Niece Share Their Stories
Valarie Cooper was diagnosed with Hydrocephalus around age two. But despite all the challenges that come with brain injury, Valarie has been able to graduate high school and moved onto college with support from family members like her aunt, Tammy Woodrich. Listen to this episode to hear each of their perspectives on navigating life with a brain injury.
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Get in touch with Tammy via Facebook, or send her an email at firstname.lastname@example.org
Reach out to Valarie at email@example.com
For more resources related to traumatic brain injury visit:
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Deborah Crawley: Brain injury today is produced by Goal 17 Media, storytellers for the common good.
Valarie Cooper: Growing up with something so complicated was really tough to be honest. And it really is something that I have not battled all by myself.
Deborah Crawley: Welcome to another episode of Brain Injury Today, your connection to the brain injury community here in Washington state, and from wherever you might be listening. I’m your host, Deborah Crawley, Executive Director for the Brain Injury Alliance of Washington. And today I’m very excited. I’ve been working hard to find an old friend slash colleague, Tammy Woodrich. And we’re also joined today by her niece, Valarie Cooper.
They’ve been involved in this community for a while and they have a story to tell us and educate us on from both the perspective of someone with a brain injury. Valarie will talk about her experience as a young person and now young adult. And Tammy, as the aunt, caregiver, supporter for Valarie… Tammy is also a vocational rehabilitation counselor, one of the positions that is so integral in supporting individuals returning from a brain injury.
So welcome. First, welcome Tammy.
Tammy Woodrich: Thank you.
Deborah Crawley: And Valarie, welcome.
Valarie Cooper: Hello.
Deborah Crawley: So Valarie, start with kind of the story about your journey with the brain injury. And then we’ll have Tammy kind of chat about the piece as a caregiver, and as you were growing up and the supports that she was finding and needing to find to support you through your journey.
Valarie Cooper: I think growing up with a traumatic brain injury in general has been one of the most difficult tasks that I’ve had to face to date. Um, of course it varies from person to person, but growing up with something so complicated. Was really tough to be honest, um, whether it was in an educational setting at home with family and public, it was a lot of like simple tasks that were heavily difficult for me and still are. Um, I’m still learning a lot of things about myself.
Um, and when I was much younger, you know, that whole idea of getting to know me and who I am with a brain injury. Was definitely hard. Um, and I’ve depended no, a lot on my family for, you know, for the early years of helping me understand those things. Um, As well as doctors and teachers, you know, it really is something that I have not battled all by myself.
Yeah. One thing I didn’t mention when we first started is that Tammy and Valarie are both part of the Nooksack Indian tribe. And I think as you talked about family there, Valarie, it was an extended family. And I think the extended family is, is involved and engaged as part of your support network, which now, and everyone has.
And that is something at least that I have seen. And the research says is, is critical for folks just achieving that highest quality of life, whatever it may be. How old were you when you were injured? Um, I was officially diagnosed at the age of two, um, well, early one or late one early twos, um, somewhere around there, but according to like family members, I have always battled with, you know, hydrocephalus since I was a newborn.
Um, but officially diagnosed at a young age between one and two.
Deborah Crawley: Yeah. So it’s been most of your life. Now you’re in college. So, so right now, uh, Valarie is going to be a junior at Western Washington university here in Washington. What’s been useful and what’s not maybe not been so useful or you wish you had from your educational environment?
Valarie Cooper: Um, from K through 12, I wasn’t ever officially, um, on a 504 plan or the IEP plan. Um, and I think a lot of that was because we are from a very small community. Um, and I have gone and had been in the same school district pretty much my whole life, um, for the teachers. The staff, the nurses, everybody who worked in, you know, the whole Mount Baker school district really knew me very well knew what was going on, knew how to help me and assist me.
Um, they would frequently contact, you know, my aunt and my uncle asked questions and pretty much accommodated to me in every way that they possibly could in high school. Um, When I was in 2018, I had gone through, um, three surgeries in that year, which was my senior year of high school, which is pretty much my most challenging thing to date.
Um, I was in the hospital for approximately a month and it was in March of 2018. So I was just finishing my senior year and a perfect example of that. Um, is. The staff of Mount Baker high school were very, very commute. Like they communicated with me. Well, they made sure that they like stressed out their necks and said, Valarie, what do you need from us?
What, how can we help you graduate? You know, we’re very supportive in a lot of ways. Like they would shoot me emails every day to see how I was doing, like to give me my homework assignments. And all of this wonderful things that helped me complete my high school journey for college. These last couple of years, uh, To be completely honest, have not been the greatest with their system of helping people with disabilities.
Um, the first year of college was a little bit difficult because it was a new setting for me. Uh, and me getting used to kind of being on my own and. During that time, because it was transitioning into an adult. I was also transitioning medical care facilities from being in a pediatric center for 18 years, moving to an adult center, but it does my sophomore year hit.
I was experiencing a lot more, uh, difficulties where I would have stages of hallucinations. I was. I would have to leave classes because I wasn’t feeling good. And the university, some professors specifically like took, uh, like they started to realize like, Oh, she’s not in class today. Like what’s going on and would send me an email about like how they help, you know, Trying to figure out what, what is basically going on.
Um, and that’s kinda like where I opened up about like what was been going on with me and what I live with and how it affects me. So the professors at Western appointed me into the right direction, the disability access center and how to find resources through them. Um, and with that, it was like a little, a lot of collaboration.
Um, I have a new neurologist at UW. Um, And he, I was very fortunate that he was able to connect to the school and, and say, you know, we have this patient, her name’s Valarie. She has hydrocephalus, she deals with chronic headaches. Um, so then ever since then I talked to the DAC and the DAC. I set up these recommendations for me to help me as a student living with a disability in college.
Um, so I have definitely found resources. But it, it was honestly a lot of work to get that done. You know, it wasn’t something that immediately happened. It took a lot of time and a lot of patience, uh,
Deborah Crawley: Yeah…having to prove you need it. You know, you had to bring the records in. And thank you for bringing this up, Valarie, because your story is not unique in that way for young folks with brain injuries, you know. One, just getting connected to the disability center at their university, and two, just having effective supports. And I think folks hearing, you know, other young people listening to this, hopefully you’ll be… courage to ask for those supports and say hey I need it to get connected. It sounds like it’s been a benefit to you. And one other thing, I’ll just say that you mentioned that I had not thought of before is that transition of healthcare from a pediatric setting to an adult setting and what a big transition that is as you’re going through a lot of big transitions.
Valarie Cooper: It was really, really difficult. Um, it. It’s totally bizarre. Like you come from, you know, a center where they’re so hands on with you, right? Because you are a child and they, you know, are there for you in every possible way, have care teams, like specifically care teams to help, you know, patients and to engage with the patients. And a lot of it is because you’re children and they do all that they can to make it so that it’s not such a scary experience. And then you transition into this big, huge, the facility where there are thousands and thousands and thousands of adults going in and out every day. And doctors who don’t sugar coat things, you know, they’re straight to the point, like, let’s get this done. You’re not a child, you’re an adult.
Um, it was really hard. I’m gonna lie… But one, I mean, fortunately I am staying within the UW med system. I have the same surgeons. I have the same people engaging in conversations regarding, you know, my healthcare plans, which kind of puts me at ease a little bit because I don’t have to start over. I’m just moving into adulthood and. You know, I appreciate, you know, the, the UW med system for, you know, recognizing that it is kind of a scary experience for me because they have tried their hardest to be like, Valarie, it’s going to be okay. You’re just not, yeah, it’d be in an Elmo room anymore. You know, like, like we’re still here, we’re still trying to support you. We’ll still get you what you need, you know, to be. To be the best you that you can be.
Deborah Crawley: I had a, a much milder disability growing up, but I do believe you do become your own advocate. You had to navigate and be like, I’m going to make this work. And those are things you’ll have to navigate your whole life. So you’re learning young to be your own advocate. But as we talk about advocates, I’m going to switch get over here now to your aunt.
Tammy, you were seeing all this from the outside looking in. How about as a lot of family member and a caregiver. And obviously I think one of the family members who had, uh, some expertise and knowledge…that would be really an interesting for me to learn more from you again.
Tammy Woodrich: Yeah. Yes. Well, thank you, Deborah and good job, Valarie, explaining how this all worked for you. It’s so important for people to know that this can be done with the support system in place.
Um, this all began with my parents. Uh, Valarie was being watched by my parents and they saw something change in her and they made everyone to pay attention to it. And so we were able to get her connected as soon as possible, two services related to that. And so we were lucky that way. And along the way, we all became educated in a way that helped make decisions and the. Great thing about the educational system was that they were with her from the beginning. And, uh, I think she was three years old when she started the preschool and speech therapy.
And, um, my mom helped her, uh, exercise, her legs and her body to, uh, grow and to learn how to it walk. Cause they told us that she probably wouldn’t walk. Okay. And that she may not even learn. We didn’t have a clue. But my mom said you are going to walk, you know, and she walked, walked walk, walk with Valarie and thank goodness she did because soon Valarie was walking and talking and doing everything a normal, you know, three year old, four year old would do.
So we’re very fortunate for that. She was inspirational and showing Valarie that she can do it. And, uh, she still has grandmas. Voice in the background. I know. And several other people in her life that have encouraged her to continue on. Um, I think that, uh, education was the key. It was the part that really helped us all move forward together. Um, and for Valarie to continue through her education so that she can continue to learn and to teach. Cause she’s a great teacher.
Deborah Crawley: So as a patient or rehab counselor, you have your own case study of a family member, right? So how do you approach the, the young folks who come to you with it’s a brain injury or some other, cause you know, any cognitive injury of course, and you know, support both traumatic and acquired with vocational rehabilitation. Cause having that opportunity for employment, whether it’s part time or full time, depending on what the young person can, uh, can do lead us through kinda your process. And I believe you said earlier, you work mostly with native American, young people.
Tammy Woodrich: Sure. I work with native Americans 16 on up. We help them get, or keep a job as long as they have a permanent disability. And they have barriers to work that are proven by a provider. So when a person comes in, we have to make sure that their assessment of the barriers to work are very clear and pronounced by their provider.
So, when that happens, when the assessments happen, we ask them provider, particularly, especially with traumatic brain injury to, uh, really lay out the barriers to work. This will help us provide. Services that will wrap around them as they go to work. So it could mean just as simple, uh, they need a resume or they might need, uh, job supports in place, or they may need even something as simple as a calendar to keep them organized.
And nowadays it’s a phone because everyone uses their phone and we have supported some. Of our clients with that type of service. And there are a lot of, uh, for an assistive devices available these days that can help people get organized or state organized to help them get through the day. Um, a lot of times the.
Cognitive disability. That’s really, yeah. Traumatic brain injury, limits them for you use of assistive devices, but, uh, they can learn with repetition as we have experienced with Valarie and, um, other people who I’ve worked with.
Deborah Crawley: Tammy, I know you’re quite involved in your tribal community, um, kind of the barriers or things that we could be doing differently, or what is it worked to to reach the native American population here in Washington state, they turning it over to you to, to educate me.
Tammy Woodrich: It’s a very important for us to understand that each tribe in Washington state is a sovereign nation. And so with that comes begin again. You have to begin again every single time you go to a different tribe. You’re beginning again. And the other part is, is that there’s always a mover and shaker. At every tribe, you just have to find them.
They might be working at the preschool. They might be working at the smoke shop. They might be working at the clinic. They could be anywhere throughout the tribe, but we don’t know who that person is. That mover and shaker is the one that can get things done. However, we always, you have to start from the top, just like in any government.
So you have, you have to begin with your information being sent to the tribal council and then to the directors of each department, asking for that person who would be most connected to your agency. So those are some of the things. So the barriers there would be that. You don’t know who that person and that, um, that you’re dealing with the government. So sometimes things are going to take a little bit longer. Um, the other thing is their rules and regulations and their policies and procedures are all different. They may be similar, but they are all different. And their information systems, including privacy, uh, regulations might be way different than even just the HIPAA laws. However we do recognize most tribes recognize the HIPAA and they understand how important it is. Then you have the underlying issue of who’s who in the zoo, because one tribe might have 150, 150 members, and another tribe might have over 3,000. So you’ve got, who are the leaders who, what family is in charge?
You also have the politics that are involved. So, you know, the other thing is the funding resource just they’re overwhelmed. They’re overwhelmed a lot of times. So you have to really find that person. It might be the, um, tribal police. It might be the tribal school. Just depending on where you go. We have no idea because those people who are in charge in those departments might be on tribal council. So there’s a lot to look at when you’re working with a tribe.
Deborah Crawley: You have given me quite the little education there and like two minutes, miss, I should have hit up a lot more, because you’re right, I think that’s an interesting piece where we were pretty much probably bottom up then, you know, we’re a smaller organization, Tammy knows this, but I think there’s some things that we could do as far as a methodology, but I will say you were the mover and shaker of the Nooksack Tribe, I knew that much. I could tell when I was working with you at the council, you kind of, I would come to you and say, so should I talk to? And Tammy knew everyone. So that was a, a nice connection. And I do think we have great services available and we just do want folks to take advantage of them like Valarie, for you, the young Valarie or the Valarie, when she was a freshman to have ease that transition. That’s what we want to be helping with.
So Valarie and Tammy, thank you so much for joining us today.
Tammy Woodrich: Thank you.
Valarie Cooper: Thank you.
Deborah Crawley: Okay. And that’s going to wrap up another episode of brain injury today. And if you want to get in touch with Valarie or Tammy, you can find their information in our show notes.
Please do subscribe to our podcast on Apple podcasts, Spotify, or wherever you get your podcast and be sure to give us a rating.
And as always, you can find support by calling (877) 824-1766.
Our resource line at the brain injury Alliance of Washington, or if visit our website, BIAWA.org.
Remember, you are not alone. And we look forward to our next conversation.