The Paid Leave Podcast

How a Mother Helped Her Daughter Rebuild a Different Life After a Traumatic Brain Injury.

• The Connecticut Paid Leave Authority • Season 3 • Episode 30

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In this episode of the podcast, we are talking about Traumatic Brain Injury (TBI). TBI’s happens when a sudden, external, physical assault damages the brain. It is one of the most common causes of disability and death in adults. TBI is a broad term that describes a vast array of injuries that happen to the brain. The damage can be focal (confined to one area of the brain) or diffuse (happens in more than one area of the brain). The severity of a brain injury can range from a mild concussion to a severe injury that results in coma or even death.

Barbara Rubin is the author of a book about her daughter Jennifer, called More Than You Can See: A Mother’s Memoir. Barbara discusses her daughter Jenn's traumatic brain injury (TBI), sustained at age 17 which led to a prolonged coma and severe communication and mobility issues. Jenn required extensive rehabilitation, including relearning basic life skills.  The family benefited from a supportive therapy center and later transitioned Jenn to a group home in Danbury, Connecticut called Abilities Beyond.  Barbara emphasizes the importance of utilizing available resources and advocating for care, highlighting the impact of her book on helping others in similar situations. Barbara also says parents in the same situation today need to take advantage of any programs made available to them including CT Paid Leave.

To get a copy of Barbara Rubin's book, More than You Can See: A Mother's Memoir:  More Than You Can See: A Mother's Memoir: Rubin, Barbara: 9781647422493: Amazon.com: Books

To learn more about Ability Beyond in Danbury please go to their website at: Ability Beyond

For more information or to apply for benefits please go to ctpaidleave.org: CT Paid Leave

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Nancy Barrow:

Hello Connecticut, and welcome to The Paid Leave Podcast. The title basically says it all. I'm Nancy Barrow, and I will be delving into this new state program and how it can help you and your family. This podcast will give you information you should know about Connecticut Paid Leave and maybe just a little bit more. Connecticut Paid Leave brings peace of mind to your home, family, and workplace. Welcome to The Paid Leave Podcast. In this episode, we're talking about traumatic brain injuries, also known as TBIs. And TBI's happen when a sudden external physical assault damages the brain. It's one of the most common causes of disability and death in adults, and the severity of brain injury can range from a mild concussion to a severe injury that results in coma or even death. Barbara Rubin is the author of a book about her daughter Jen called, More Than You Can See: A Mother's Memoir. And when I found the book, I thought to myself, this would make a great podcast, and here we are Barbara Well, welcome to The Paid Leave Podcast. I'm so happy that you're here and you could join us.

Barbara Rubin:

I'm happy to be here. I'm glad to get the word out about TBI and all the things associated with it.

Nancy Barrow:

Well let's talk about what happened your daughter's life and your family's life changed in an instant. In one day, your daughter was just 17 years old. Can you tell me the story of your daughter, Jen, and what happened to her?

Barbara Rubin:

She was on a local road traveling home from an adventure they had gone on. They hit head on with a cement truck. Jen was unconscious at the time the rescue teams got there, and, you know, she was evacuated from the car and taken to the hospital. She was in a deep coma. She remained in this coma with her life, you know, balancing between life and death for two weeks, and then she started slowly coming out of this coma, then we began to have to rebuild a life for Jen. When she was totally out of the coma, she was non responsive to cues when we would say, you know, squeeze my hand or blink your eyes. She didn't do any of that. So they had a hard time figuring out exactly how far out of the coma she really was, but we came to realize after a few weeks, it was because her communication center, the language center, was really severely damaged, so she really couldn't talk, and she couldn't understand us when we talked to her, that was the biggest disability that presented itself. So from the hospital, she went to a rehab center. She virtually had to relearn everything. It was like she was an alien put on a different planet. She had to learn how to breathe, she had to how to sit and walk and how to feed herself or or to take in food. You know, everything else in between, as time went on, she became very mobile, very strong, very animated and energized, but communication remained, the lingering disability.

Nancy Barrow:

And so when did the doctors tell you this is a traumatic brain injury. Did they give you that diagnosis early on?

Barbara Rubin:

Yeah, right away it was like, you know, she has a brain injury, but we did not know what that meant, right? Our only information basis at that time was how they scripted it in Hollywood. You know, you're unconscious for a while, and then you wake up and maybe you have amnesia, and a lot of funny things happen, and then some point you remember everything that is not how it plays out, right? So we were really totally in the dark as to what was going to be involved. We thought when she came out of the coma, life would resume, as it had been. A doctor told this initially, he said it's going to be Jen with a lot of holes punched in the personality, and I can say they were pretty big, gaping holes that were punched in her personality. She was still sweet, but where she had been, you know, a calm, even tempered person. You know, she had inappropriate behaviors after the brain injury. Injury. She was very loud when she was happy. She was very loud when she was mad. There was a big, big change.

Nancy Barrow:

I can imagine that changed the trajectory of your life and your family's life. How different did that look to you?

Barbara Rubin:

Well, from the day of the injury, for a year and a half, I was with her or my husband with was with her every day, trying to understand what had happened, being there to advocate for her because she couldn't talk and understand people. And then it also learning how to handle her, learning how to work with her, PT and OT, that was required, you know, so that we could do it if we had her home, and learning everything that we could about where she was at. And, you know, after a year and a half, I was with her at least two or three times a week, and that went on for years, how our life changed. She became the main focus of our family. Her care and what was going on with her really dictated everything that was happening in our lives.

Nancy Barrow:

Was she your only child? Or did you have more children?

Barbara Rubin:

She had a younger sister, Amy. I can say that the injury happened during the summer. So Amy was there to see what all was going on. She was 13 at the time, quite young, but a really strong personality, and she handled it amazingly well. I think that she kept this facade up that I'm okay for mom and dad, so we wouldn't have to worry about her. But as Jen started going through the rehab. Amy was there on weekends and holidays, and she was really intrigued by the way therapists worked with Jen, and how you have to break each life skill down into these little minutia parts in order to help a person relearn them. So she became Amy was part of our team, our team taking care of Jen.

Nancy Barrow:

And how did that alter her? Did she go into a career that would help people?

Barbara Rubin:

Oh yes, she sure did. She became a speech language pathologist. Wow. She loves working, she works in school system. She loves working with kids who have needs. She she's really gifted at what she does, but she really has an understanding of what the family is going through also, because it's just not like the person that you're working with. It's their family, and how do they work together? And she really is excellent at having empathy and understanding for what parents are dealing with when their child has a disability.

Nancy Barrow:

And you said earlier that it, you know, it affects the whole family. So how did this affect you? Were you working at the time when Jen's accident happened? And what about your husband? Was he working as well?

Barbara Rubin:

I was a self employed. So when the accident happened, I was just like, I'm done. You know, this is what I have to do. Fortunately for our family, my income was to buy the extras and to be there for college educations and stuff. So we didn't need my income to cover daily expenses. So I had the freedom to be with Jen. My husband, Mark, was a teacher, so he had worked long enough that basically he could take off whatever time was needed. He was there the summer, you know, with me, like every day and all that, but there were a lot of surgeries follow up, surgeries that were needed, a lot of things that required him to take off of work. And we were very fortunate that he had that paid leave that he could take what he needed. But not everybody is that fortunate, and we understand that.

Nancy Barrow:

Yeah, that, I mean, you are very lucky. And some people, when they have to make a decision between taking care. Of a loved one, they have to quit their job if they're going to do that, and so that's where our plan, and New York's plan, also where you are, comes into play, right? It really helps bridge that gap. So you don't have to quit your job. You could have a little income replacement for up to 12 weeks to help with caregiving, which you were, you were her primary caregiver really. Tell me what the treatments were for Jen. Did she go just to one therapy place, or did she go to several different places? And what was her Connecticut connection?

Barbara Rubin:

She wasn't at a high enough level to qualify for a lot of places. So the place we found was amazing. Unfortunately, they're no longer in business, but they were a perfect placement for her, as I said, she had to relearn everything, and they documented it with video and everything so carefully so you could really gage the progress, which, at that time, insurance companies covered you, as long as you were making progress. I think that has since changed, and it's now you are given a certain length of time, and that's it, you're done. So we were fortunate that we were on this path of having insurance coverage. But anyway, what did she have as far as therapy? She had, you know, PT, OT and speech, speech involved, also learning to eat, which was a real challenge. She didn't know what food even was. Just didn't understand the world she was in. And then even when she learned to eat, recognizing what was edible and what wasn't she didn't know. So they did music therapy. They did, you know, massage therapy. They did a lot of extra things that weren't typical of a lot of places. And the really wonderful thing for our family was this facility every Sunday, had a brunch for the families. And for free, you came in and you were with other people who were going through the exact same thing. So for our family, we kind of had group therapy.

Nancy Barrow:

Yeah, it was a support group for you.

Barbara Rubin:

Oh, it was, it was a healing place for all of us. And that became, you know, they brought in guest lectures. They explained things that we didn't understand. That was a lifesaver for our family after she was there for, I think it was a year and a half, she had gotten to a high enough level. She wasn't acute care any longer. She needed to be moved to a next level. She was not a candidate to be home. She required 24 hour a day supervision, and you know, just she was in constant motion and didn't understand, was it hazard to her or a danger? So we started looking for the next level, which was a group home, and thanks to the New York Brain Injury Association, they helped to direct us to placements that would be appropriate. And we found the place in Danbury, Connecticut, actually Brookfield, Connecticut. It was called DayTar at the time, and it has since become Ability Beyond Disability. And they work with a variety of group homes defending on the level of care that you need. Some of their homes have nurses on hand. Others just have somebody come and check in on them once a week so they cover all the different levels. She wasn't in the nursing level, but she was in the low functioning level of needing this constant supervision. This is the crux of what my book is about, is the unique caregiving that she required and how we built this amazing life for her, given a severe disability. And because she was so unique in not understanding what we. And being able to verbalize things. It was, you know, being able to think outside of the box and and try new things and be adventuresome. And that's what we looked for in caregivers within their system to work with Jen.

Nancy Barrow:

I think I told you about Connecticut Paid Leave's, caregiver leave, and we also cover chronic conditions like TBI. So you really could have benefited through a program like this, if it was around when this happened to your daughter. And it would have been great if you were in Connecticut as well. You could take up to 12 weeks of income replacement to take care of your daughter, and since it was a chronic condition, you could do this every calendar year, and it could be 12 weeks in a block leave, like all at once, or intermittent leave, or if you were working reduced schedule, like if you had to take afternoons off, or things like that. I love the flexibility of our program. But how important would a program like this have been to you back then?

Barbara Rubin:

Like I said, we were fortunate that my husband had the leave time. We weren't dependent on my income. So I can say I knew other people who would have benefited tremendously from that, because they didn't have those advantages. And, you know, I know of people who even had a mild TBI that didn't get diagnosed as they should have, lost their jobs and really were strapped to cover their expenses and to be able to get the care they needed so they are more able to identify a mild TBI now than they were then. And so I know people this program would have helped.

Nancy Barrow:

What advice would you give a parent who has the ability to have these kind of programs that weren't available and you were lucky enough not to need?

Barbara Rubin:

You need to take advantage of every program that's available, because you're going to need help. I think recognizing that you can't do it all alone, taking the help where you can get it, and certainly for the person that's in you know, you've got to think of them for the long term, what their needs are. And you know, money goes a long way to making things doable, giving them a new life, helping the family recover, because it is a huge financial burden. And you know, any any help that you can get should be well received.

Nancy Barrow:

That's great. Tell me. Why did you write this book? Did you always want to write a book?

Barbara Rubin:

No, and I never considered myself a writer. I was encouraged by a friend to write this to get the story out. He says, It's too important of a story not to have others know. And again, it revolved around the kind of caregiving that was done for Jen. And so I was very resistant at first, and he's like, Well, look, do do an outline, and I'll get somebody to do it for you, because the story needs to be told. And as I started out wanting what needed to be said and had, I'm like, Okay, I'm the one who has to write this. The reason I wrote it was to help others. And in various opportunities I've had to meet with readers or do programs with readers, I've heard amazing stories, and I've heard how it has helped people in a lot of different ways. Sometimes it was helpful to know that they could be such a strong advocate for this person that it was okay to stand up to the establishment and say, No, that's not right. Let's work on making this better. That an another interesting thing that came out that it's okay to ask for help and to say, I can't do it alone, and for parents to say, I can't take care of them totally by myself. It's okay to place them in a facility or a group home and help them rebuild a life there, knowing I don't have the energy or the means to do it at home, but I can better serve them by being an advocate for them and making sure they get what they need, maybe somewhere else. So, you know, for a lot of people, that's a real hard thing to accept.

Nancy Barrow:

Yeah, there must be, you know, and I don't mean to say this in a rude manner, but I'm sure there is sort of guilt associated with that, not having your daughter in your home,

Barbara Rubin:

Absolutely, absolutely. And you know, I knew one family who, after reading the book, had been struggling with a, you know, an adult child at home, and said, We're going to give a group home a try, because we can see how you they can build a life there. And it's not like they're you're not part of their life anymore, but that's kind of a normal transition for a young adult to move out of the nest and helping them to rebuild a life.

Nancy Barrow:

It's really interesting how you said that people reacted to your book. And it must be so satisfying that you are helping other people.

Barbara Rubin:

Absolutely, that's the reward. And I've been in groups where people share even with their community. They say, Oh, I had a brother, and none of my friends here know this, who had a TBI, and I didn't know how to share that information with others. You know, people opening up. It was like it gave them permission to open up.

Nancy Barrow:

It's really quite amazing what your whole family has been through. You didn't have to go to, like, family therapy, but basically, you said that the group therapy that you went through that was where you found the best healing for yourself.

Barbara Rubin:

Absolutely, yeah. And before that, if somebody said they had to go to group therapy, I really didn't understand the benefits of that. But having people say I understand, and they really do. You know, it makes a lot of difference.

Nancy Barrow:

Yeah, I think you know, if you had lived in Connecticut and it was now, there'd be so much available to you, because we help with mental health visits, and there's a lot that you could have utilized from a program like Connecticut Paid Leave. And I know New York has a paid leave program as well. So I'm thankful that these programs are here for people today who may be going through what you're going through. Tell me a little bit about Jen before 17, before the accident. Tell me what she was like.

Barbara Rubin:

She was a very soft spoken, gentle kind of person. She was very non competitive. She liked sports, she liked to play tennis, but she wasn't going to be great because she wasn't that aggressive. You know, she was a beautiful skier, but, you know, unlike her sister, who was very competitive, and, you know, was on the race team, Jennifer, like, danced down the hill. I mean, she was a beautiful skier. She was working and driving, and life was really good. She was getting ready to go into her senior year of high school. She had an amazing boyfriend who stayed with us through much of this, we're still in contact with him. That's lovely all these years later, you know, so life was really good for Jen. She was excited about life, and she had gotten to the point where she had, you know, she had her own money, her own car. And you know, she and her sister could go on little outings together. They were really close. And you know, it was life was amazing. It was wonderful. It was perfect, until it wasn't.

Nancy Barrow:

Until it wasn't, What did you learn about yourself through Jen's accident and her TBI and her disability.

Barbara Rubin:

Well I learned I have strong character to have come out of it and be okay mentally, because I know most families struggle when they have a family member that goes through this, it can be shattering for a family. So I learned I'm also a problem solver that I really didn't know before, because typical therapies didn't work for Jen. We had to figure out. Their ways, and often the professionals, didn't have the time to devote to the research and the thinking and all that I had that time. I made that time, and I looked for solutions where there didn't seem to be any. Didn't know that, and didn't know I was the fighter that I was to stand up for her rights and what she needed.

Nancy Barrow:

That's beatiful. What would you like people to take away from this podcast?

Barbara Rubin:

Well, I hope it encourages them to reach out, ask for help, take it where you can get it. Be resourceful, but certainly, programs like yours help people get to the next step. You know, it takes away the worry, maybe of money so that you can focus on either you getting better, or your family member getting better, or your friend, whoever it may be, use your energy that way. And you know, let programs like yours help with the resources.

Nancy Barrow:

How can people listening get your book, More

Than You Can See:

A mother's Memoir?

Barbara Rubin:

It's available everywhere you can buy books. You know, if you go into your local bookstore, they'll order it for you. You can buy it online. It's on Amazon. It's virtually everywhere you can buy a book.

Nancy Barrow:

It's wonderful. Any last thoughts that you'd like people to know?

Barbara Rubin:

Well, I want to just thank you for having podcasts like this, making this information available for listeners, for families out there that are struggling. And you know, I appreciate all the people that work with helping people who have disabilities or illnesses or whatever, because it's tragic when people have to try to do it alone, don't have resources available to them, because it's life altering when those programs are there.

Nancy Barrow:

Thank you, Barbara Rubin for being on The Paid Leave Podcast.

Barbara Rubin:

Thank you for having me.

Nancy Barrow:

And to learn more or to apply for benefits please go to ctpaidleave.org. This has been another edition of The Paid Leave Podcast. Please like and subscribe so you'll be notified about new podcasts that become available. Connecticut Paid Leave is a public act with a personal purpose. I'm Nancy Barrow, and thanks for listening.

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