January 13, 2025 • 27 mins
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
https://ctpaidleave.org/s/?language=en_US
https://www.facebook.com/CTPaidLeave
https://www.instagram.com/ctpaidleave/
https://twitter.com/CTPaidLeave
https://www.youtube.com/results?search_query=ct+paid+leave
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Nancy Barrow (00:01):
Hello Connecticut, and welcome to The Paid Leave
Podcast. The title basicallysays it all. I'm Nancy Barrow,
and I will be delving into thisnew state program and how it can
help you and your family. Thispodcast will give you
information you should knowabout Connecticut Paid Leave and
maybe just a little bit more.
Connecticut Paid Leave bringspeace of mind to your home,
(00:22):
family, and workplace. Welcometo The Paid Leave Podcast. In
this episode, we're talkingabout traumatic brain injuries,
also known as TBIs. And TBI'shappen when a sudden external
physical assault damages thebrain. It's one of the most
common causes of disability anddeath in adults, and the
severity of brain injury canrange from a mild concussion to
(00:45):
a severe injury that results incoma or even death. Barbara
Rubin is the author of a bookabout her daughter Jen called,
More Than You Can See (00:53):
A Mother's Memoir. And when I
found the book, I thought tomyself, this would make a great
podcast, and here we are BarbaraWell, welcome to The Paid Leave
Podcast. I'm so happy thatyou're here and you could join
us.
Barbara Rubin (01:08):
I'm happy to be here. I'm glad to get the word
out about TBI and all the thingsassociated with it.
Nancy Barrow (01:15):
Well let's talk about what happened your
daughter's life and yourfamily's life changed in an
instant. In one day, yourdaughter was just 17 years old.
Can you tell me the story ofyour daughter, Jen, and what
happened to her?
Barbara Rubin (01:27):
She was on a local road traveling home from
an adventure they had gone on.
They hit head on with a cementtruck. Jen was unconscious at
the time the rescue teams gotthere, and, you know, she was
evacuated from the car and takento the hospital. She was in a
deep coma. She remained in thiscoma with her life, you know,
(01:51):
balancing between life and deathfor two weeks, and then she
started slowly coming out ofthis coma, then we began to have
to rebuild a life for Jen. Whenshe was totally out of the coma,
she was non responsive to cueswhen we would say, you know,
(02:16):
squeeze my hand or blink youreyes. She didn't do any of that.
So they had a hard time figuringout exactly how far out of the
coma she really was, but we cameto realize after a few weeks, it
was because her communicationcenter, the language center, was
really severely damaged, so shereally couldn't talk, and she
(02:42):
couldn't understand us when wetalked to her, that was the
biggest disability thatpresented itself. So from the
hospital, she went to a rehabcenter. She virtually had to
relearn everything. It was likeshe was an alien put on a
different planet. She had tolearn how to breathe, she had to
(03:07):
how to sit and walk and how tofeed herself or or to take in
food. You know, everything elsein between, as time went on, she
became very mobile, very strong,very animated and energized, but
communication remained, thelingering disability.
Nancy Barrow (03:35):
And so when did the doctors tell you this is a
traumatic brain injury. Did theygive you that diagnosis early
on?
Barbara Rubin (03:44):
Yeah, right away it was like, you know, she has a
brain injury, but we did notknow what that meant, right? Our
only information basis at thattime was how they scripted it in
Hollywood. You know, you'reunconscious for a while, and
then you wake up and maybe youhave amnesia, and a lot of funny
things happen, and then somepoint you remember everything
(04:07):
that is not how it plays out,right? So we were really totally
in the dark as to what was goingto be involved. We thought when
she came out of the coma, lifewould resume, as it had been. A
(04:29):
doctor told this initially, hesaid it's going to be Jen with a
lot of holes punched in thepersonality, and I can say they
were pretty big, gaping holesthat were punched in her
personality. She was stillsweet, but where she had been,
(04:50):
you know, a calm, even temperedperson. You know, she had
inappropriate behaviors afterthe brain injury. Injury. She
was very loud when she washappy. She was very loud when
she was mad. There was a big,big change.
Nancy Barrow (05:08):
I can imagine that changed the trajectory of your
life and your family's life. Howdifferent did that look to you?
Barbara Rubin (05:16):
Well, from the day of the injury, for a year
and a half, I was with her or myhusband with was with her every
day, trying to understand whathad happened, being there to
advocate for her because shecouldn't talk and understand
people. And then it alsolearning how to handle her,
(05:42):
learning how to work with her,PT and OT, that was required,
you know, so that we could do itif we had her home, and learning
everything that we could aboutwhere she was at. And, you know,
after a year and a half, I waswith her at least two or three
(06:02):
times a week, and that went onfor years, how our life changed.
She became the main focus of ourfamily. Her care and what was
going on with her reallydictated everything that was
happening in our lives.
Nancy Barrow (06:19):
Was she your only child? Or did you have more
children?
Barbara Rubin (06:22):
She had a younger sister, Amy. I can say that the
injury happened during thesummer. So Amy was there to see
what all was going on. She was13 at the time, quite young, but
a really strong personality, andshe handled it amazingly well. I
(06:48):
think that she kept this facadeup that I'm okay for mom and
dad, so we wouldn't have toworry about her. But as Jen
started going through the rehab.
Amy was there on weekends andholidays, and she was really
intrigued by the way therapistsworked with Jen, and how you
(07:13):
have to break each life skilldown into these little minutia
parts in order to help a personrelearn them. So she became Amy
was part of our team, our teamtaking care of Jen.
Nancy Barrow (07:33):
And how did that alter her? Did she go into a
career that would help people?
Barbara Rubin (07:38):
Oh yes, she sure did. She became a speech
language pathologist. Wow. Sheloves working, she works in
school system. She loves workingwith kids who have needs. She
she's really gifted at what shedoes, but she really has an
(08:02):
understanding of what the familyis going through also, because
it's just not like the personthat you're working with. It's
their family, and how do theywork together? And she really is
excellent at having empathy andunderstanding for what parents
(08:24):
are dealing with when theirchild has a disability.
Nancy Barrow (08:26):
And you said earlier that it, you know, it
affects the whole family. So howdid this affect you? Were you
working at the time when Jen'saccident happened? And what
about your husband? Was heworking as well?
Barbara Rubin (08:38):
I was a self employed. So when the accident
happened, I was just like, I'mdone. You know, this is what I
have to do. Fortunately for ourfamily, my income was to buy the
extras and to be there forcollege educations and stuff. So
(09:01):
we didn't need my income tocover daily expenses. So I had
the freedom to be with Jen. Myhusband, Mark, was a teacher, so
he had worked long enough thatbasically he could take off
whatever time was needed. He wasthere the summer, you know, with
(09:25):
me, like every day and all that,but there were a lot of
surgeries follow up, surgeriesthat were needed, a lot of
things that required him to takeoff of work. And we were very
fortunate that he had that paidleave that he could take what he
(09:46):
needed. But not everybody isthat fortunate, and we
understand that.
Nancy Barrow (09:52):
Yeah, that, I mean, you are very lucky. And
some people, when they have tomake a decision between taking
care. Of a loved one, they haveto quit their job if they're
going to do that, and so that'swhere our plan, and New York's
plan, also where you are, comesinto play, right? It really
helps bridge that gap. So youdon't have to quit your job. You
(10:15):
could have a little incomereplacement for up to 12 weeks
to help with caregiving, whichyou were, you were her primary
caregiver really. Tell me whatthe treatments were for Jen. Did
she go just to one therapyplace, or did she go to several
different places? And what washer Connecticut connection?
Barbara Rubin (10:33):
She wasn't at a high enough level to qualify for
a lot of places. So the place wefound was amazing.
Unfortunately, they're no longerin business, but they were a
perfect placement for her, as Isaid, she had to relearn
(10:56):
everything, and they documentedit with video and everything so
carefully so you could reallygage the progress, which, at
that time, insurance companiescovered you, as long as you were
making progress. I think thathas since changed, and it's now
(11:16):
you are given a certain lengthof time, and that's it, you're
done. So we were fortunate thatwe 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,
(11:39):
also learning to eat, which wasa real challenge. She didn't
know what food even was. Justdidn't understand the world she
was in. And then even when shelearned to eat, recognizing what
was edible and what wasn't shedidn't know. So they did music
(12:03):
therapy. They did, you know,massage therapy. They did a lot
of extra things that weren'ttypical of a lot of places. And
the really wonderful thing forour family was this facility
every Sunday, had a brunch forthe families. And for free, you
(12:29):
came in and you were with otherpeople who were going through
the exact same thing. So for ourfamily, we kind of had group
therapy.
Nancy Barrow (12:39):
Yeah, it was a support group for you.
Barbara Rubin (12:41):
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 wedidn't understand. That was a
lifesaver for our family aftershe was there for, I think it
(13:05):
was a year and a half, she hadgotten to a high enough level.
She wasn't acute care anylonger. She needed to be moved
to a next level. She was not acandidate to be home. She
required 24 hour a daysupervision, and you know, just
(13:26):
she was in constant motion anddidn't understand, was it hazard
to her or a danger? So westarted looking for the next
level, which was a group home,and thanks to the New York Brain
(13:46):
Injury Association, they helpedto direct us to placements that
would be appropriate. And wefound the place in Danbury,
Connecticut, actuallyBrookfield, Connecticut. It was
called DayTar at the time, andit has since become Ability
Beyond Disability. And they workwith a variety of group homes
(14:12):
defending on the level of carethat you need. Some of their
homes have nurses on hand.
Others just have somebody comeand check in on them once a week
so they cover all the differentlevels. She wasn't in the
nursing level, but she was inthe low functioning level of
needing this constantsupervision. This is the crux of
(14:35):
what my book is about, is theunique caregiving that she
required and how we built thisamazing life for her, given a
severe disability. And becauseshe was so unique in not
understanding what we. And beingable to verbalize things. It
(15:01):
was, you know, being able tothink outside of the box and and
try new things and beadventuresome. And that's what
we looked for in caregiverswithin their system to work with
Jen.
Nancy Barrow (15:23):
I think I told you about Connecticut Paid Leave's,
caregiver leave, and we alsocover chronic conditions like
TBI. So you really could havebenefited through a program like
this, if it was around when thishappened to your daughter. And
it would have been great if youwere in Connecticut as well. You
could take up to 12 weeks ofincome replacement to take care
of your daughter, and since itwas a chronic condition, you
(15:46):
could do this every calendaryear, and it could be 12 weeks
in a block leave, like all atonce, or intermittent leave, or
if you were working reducedschedule, like if you had to
take afternoons off, or thingslike that. I love the
flexibility of our program. Buthow important would a program
like this have been to you backthen?
Barbara Rubin (16:03):
Like I said, we were fortunate that my husband
had the leave time. We weren'tdependent on my income. So I can
say I knew other people whowould have benefited
tremendously from that, becausethey didn't have those
advantages. And, you know, Iknow of people who even had a
(16:30):
mild TBI that didn't getdiagnosed as they should have,
lost their jobs and really werestrapped to cover their expenses
and to be able to get the carethey needed so they are more
able to identify a mild TBI nowthan they were then. And so I
(16:59):
know people this program wouldhave helped.
Nancy Barrow (17:02):
What advice would you give a parent who has the
ability to have these kind ofprograms that weren't available
and you were lucky enough not toneed?
Barbara Rubin (17:12):
You need to take advantage of every program
that's available, because you'regoing to need help. I think
recognizing that you can't do itall alone, taking the help where
you can get it, and certainlyfor the person that's in you
know, you've got to think ofthem for the long term, what
(17:33):
their needs are. And you know,money goes a long way to making
things doable, giving them a newlife, helping the family
recover, because it is a hugefinancial burden. And you know,
any any help that you can getshould be well received.
Nancy Barrow (17:58):
That's great. Tell me. Why did you write this book?
Did you always want to write abook?
Barbara Rubin (18:04):
No, and I never considered myself a writer. I
was encouraged by a friend towrite this to get the story out.
He says, It's too important of astory not to have others know.
And again, it revolved aroundthe kind of caregiving that was
done for Jen. And so I was veryresistant at first, and he's
(18:30):
like, Well, look, do do anoutline, and I'll get somebody
to do it for you, because thestory needs to be told. And as I
started out wanting what neededto be said and had, I'm like,
Okay, I'm the one who has towrite this. The reason I wrote
it was to help others. And invarious opportunities I've had
(18:54):
to meet with readers or doprograms with readers, I've
heard amazing stories, and I'veheard how it has helped people
in a lot of different ways.
Sometimes it was helpful to knowthat they could be such a strong
advocate for this person that itwas okay to stand up to the
(19:15):
establishment and say, No,that's not right. Let's work on
making this better. That ananother interesting thing that
came out that it's okay to askfor help and to say, I can't do
it alone, and for parents tosay, I can't take care of them
totally by myself. It's okay toplace them in a facility or a
(19:42):
group home and help them rebuilda life there, knowing I don't
have the energy or the means todo it at home, but I can better
serve them by being an advocatefor them and making sure they
get what they need, maybesomewhere else. So, you know,
(20:06):
for a lot of people, that's areal hard thing to accept.
Nancy Barrow (20:12):
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, nothaving your daughter in your
home,
Barbara Rubin (20:21):
Absolutely, absolutely. And you know, I knew
one family who, after readingthe book, had been struggling
with a, you know, an adult childat home, and said, We're going
to give a group home a try,because we can see how you they
(20:43):
can build a life there. And it'snot like they're you're not part
of their life anymore, butthat's kind of a normal
transition for a young adult tomove out of the nest and helping
them to rebuild a life.
Nancy Barrow (21:01):
It's really interesting how you said that
people reacted to your book. Andit must be so satisfying that
you are helping other people.
Barbara Rubin (21:10):
Absolutely, that's the reward. And I've been
in groups where people shareeven with their community. They
say, Oh, I had a brother, andnone of my friends here know
this, who had a TBI, and Ididn't know how to share that
information with others. Youknow, people opening up. It was
(21:31):
like it gave them permission toopen up.
Nancy Barrow (21:34):
It's really quite amazing what your whole family
has been through. You didn'thave to go to, like, family
therapy, but basically, you saidthat the group therapy that you
went through that was where youfound the best healing for
yourself.
Barbara Rubin (21:50):
Absolutely, yeah.
And before that, if somebodysaid they had to go to group
therapy, I really didn'tunderstand the benefits of that.
But having people say Iunderstand, and they really do.
You know, it makes a lot ofdifference.
Nancy Barrow (22:11):
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 mentalhealth visits, and there's a lot
that you could have utilizedfrom a program like Connecticut
Paid Leave. And I know New Yorkhas a paid leave program as
well. So I'm thankful that theseprograms are here for people
(22:33):
today who may be going throughwhat you're going through. Tell
me a little bit about Jen before17, before the accident. Tell me
what she was like.
Barbara Rubin (22:43):
She was a very soft spoken, gentle kind of
person. She was very noncompetitive. She liked sports,
she liked to play tennis, butshe wasn't going to be great
(23:03):
because she wasn't thataggressive. You know, she was a
beautiful skier, but, you know,unlike her sister, who was very
competitive, and, you know, wason the race team, Jennifer,
like, danced down the hill. Imean, she was a beautiful skier.
(23:24):
She was working and driving, andlife was really good. She was
getting ready to go into hersenior year of high school. She
had an amazing boyfriend whostayed with us through much of
this, we're still in contactwith him. That's lovely all
(23:46):
these years later, you know, solife was really good for Jen.
She was excited about life, andshe had gotten to the point
where she had, you know, she hadher own money, her own car. And
you know, she and her sistercould go on little outings
together. They were reallyclose. And you know, it was life
(24:11):
was amazing. It was wonderful.
It was perfect, until it wasn't.
Nancy Barrow (24:16):
Until it wasn't, What did you learn about
yourself through Jen's accidentand her TBI and her disability.
Barbara Rubin (24:25):
Well I learned I have strong character to have
come out of it and be okaymentally, because I know most
families struggle when they havea family member that goes
through this, it can beshattering for a family. So I
(24:47):
learned I'm also a problemsolver that I really didn't know
before, because typicaltherapies didn't work for Jen.
We had to figure out. Theirways, and often the
professionals, didn't have thetime to devote to the research
(25:07):
and the thinking and all that Ihad that time. I made that time,
and I looked for solutions wherethere didn't seem to be any.
Didn't know that, and didn'tknow I was the fighter that I
was to stand up for her rightsand what she needed.
Nancy Barrow (25:30):
That's beatiful.
What would you like people totake away from this podcast?
Barbara Rubin (25:35):
Well, I hope it encourages them to reach out,
ask for help, take it where youcan get it. Be resourceful, but
certainly, programs like yourshelp people get to the next
(25:57):
step. You know, it takes awaythe worry, maybe of money so
that you can focus on either yougetting better, or your family
member getting better, or yourfriend, whoever it may be, use
your energy that way. And youknow, let programs like yours
(26:20):
help with the resources.
Nancy Barrow (26:22):
How can people listening get your book, More
Than You Can See (26:24):
A mother's Memoir?
Barbara Rubin (26:26):
It's available everywhere you can buy books.
You know, if you go into yourlocal bookstore, they'll order
it for you. You can buy itonline. It's on Amazon. It's
virtually everywhere you can buya book.
Nancy Barrow (26:41):
It's wonderful.
Any last thoughts that you'dlike people to know?
Barbara Rubin (26:44):
Well, I want to just thank you for having
podcasts like this, making thisinformation available for
listeners, for families outthere that are struggling. And
you know, I appreciate all thepeople that work with helping
(27:04):
people who have disabilities orillnesses or whatever, because
it's tragic when people have totry to do it alone, don't have
resources available to them,because it's life altering when
those programs are there.
Nancy Barrow (27:24):
Thank you, Barbara Rubin for being on The Paid
Leave Podcast.
Barbara Rubin (27:27):
Thank you for having me.
Nancy Barrow (27:28):
And to learn more or to apply for benefits please
go to ctpaidleave.org. This hasbeen another edition of The Paid
Leave Podcast. Please like andsubscribe so you'll be notified
about new podcasts that becomeavailable. Connecticut Paid
Leave is a public act with apersonal purpose. I'm Nancy
Barrow, and thanks forlistening.
Hello Connecticut, and welcome to The Paid Leave
Podcast. The title basicallysays it all. I'm Nancy Barrow,
and I will be delving into thisnew state program and how it can
help you and your family. Thispodcast will give you
information you should knowabout Connecticut Paid Leave and
maybe just a little bit more.
Connecticut Paid Leave bringspeace of mind to your home,
(00:22):
family, and workplace. Welcometo The Paid Leave Podcast. In
this episode, we're talkingabout traumatic brain injuries,
also known as TBIs. And TBI'shappen when a sudden external
physical assault damages thebrain. It's one of the most
common causes of disability anddeath in adults, and the
severity of brain injury canrange from a mild concussion to
(00:45):
a severe injury that results incoma or even death. Barbara
Rubin is the author of a bookabout her daughter Jen called,
More Than You Can See (00:53):
A Mother's Memoir. And when I
found the book, I thought tomyself, this would make a great
podcast, and here we are BarbaraWell, welcome to The Paid Leave
Podcast. I'm so happy thatyou're here and you could join
us.
Barbara Rubin (01:08):
I'm happy to be here. I'm glad to get the word
out about TBI and all the thingsassociated with it.
Nancy Barrow (01:15):
Well let's talk about what happened your
daughter's life and yourfamily's life changed in an
instant. In one day, yourdaughter was just 17 years old.
Can you tell me the story ofyour daughter, Jen, and what
happened to her?
Barbara Rubin (01:27):
She was on a local road traveling home from
an adventure they had gone on.
They hit head on with a cementtruck. Jen was unconscious at
the time the rescue teams gotthere, and, you know, she was
evacuated from the car and takento the hospital. She was in a
deep coma. She remained in thiscoma with her life, you know,
(01:51):
balancing between life and deathfor two weeks, and then she
started slowly coming out ofthis coma, then we began to have
to rebuild a life for Jen. Whenshe was totally out of the coma,
she was non responsive to cueswhen we would say, you know,
(02:16):
squeeze my hand or blink youreyes. She didn't do any of that.
So they had a hard time figuringout exactly how far out of the
coma she really was, but we cameto realize after a few weeks, it
was because her communicationcenter, the language center, was
really severely damaged, so shereally couldn't talk, and she
(02:42):
couldn't understand us when wetalked to her, that was the
biggest disability thatpresented itself. So from the
hospital, she went to a rehabcenter. She virtually had to
relearn everything. It was likeshe was an alien put on a
different planet. She had tolearn how to breathe, she had to
(03:07):
how to sit and walk and how tofeed herself or or to take in
food. You know, everything elsein between, as time went on, she
became very mobile, very strong,very animated and energized, but
communication remained, thelingering disability.
Nancy Barrow (03:35):
And so when did the doctors tell you this is a
traumatic brain injury. Did theygive you that diagnosis early
on?
Barbara Rubin (03:44):
Yeah, right away it was like, you know, she has a
brain injury, but we did notknow what that meant, right? Our
only information basis at thattime was how they scripted it in
Hollywood. You know, you'reunconscious for a while, and
then you wake up and maybe youhave amnesia, and a lot of funny
things happen, and then somepoint you remember everything
(04:07):
that is not how it plays out,right? So we were really totally
in the dark as to what was goingto be involved. We thought when
she came out of the coma, lifewould resume, as it had been. A
(04:29):
doctor told this initially, hesaid it's going to be Jen with a
lot of holes punched in thepersonality, and I can say they
were pretty big, gaping holesthat were punched in her
personality. She was stillsweet, but where she had been,
(04:50):
you know, a calm, even temperedperson. You know, she had
inappropriate behaviors afterthe brain injury. Injury. She
was very loud when she washappy. She was very loud when
she was mad. There was a big,big change.
Nancy Barrow (05:08):
I can imagine that changed the trajectory of your
life and your family's life. Howdifferent did that look to you?
Barbara Rubin (05:16):
Well, from the day of the injury, for a year
and a half, I was with her or myhusband with was with her every
day, trying to understand whathad happened, being there to
advocate for her because shecouldn't talk and understand
people. And then it alsolearning how to handle her,
(05:42):
learning how to work with her,PT and OT, that was required,
you know, so that we could do itif we had her home, and learning
everything that we could aboutwhere she was at. And, you know,
after a year and a half, I waswith her at least two or three
(06:02):
times a week, and that went onfor years, how our life changed.
She became the main focus of ourfamily. Her care and what was
going on with her reallydictated everything that was
happening in our lives.
Nancy Barrow (06:19):
Was she your only child? Or did you have more
children?
Barbara Rubin (06:22):
She had a younger sister, Amy. I can say that the
injury happened during thesummer. So Amy was there to see
what all was going on. She was13 at the time, quite young, but
a really strong personality, andshe handled it amazingly well. I
(06:48):
think that she kept this facadeup that I'm okay for mom and
dad, so we wouldn't have toworry about her. But as Jen
started going through the rehab.
Amy was there on weekends andholidays, and she was really
intrigued by the way therapistsworked with Jen, and how you
(07:13):
have to break each life skilldown into these little minutia
parts in order to help a personrelearn them. So she became Amy
was part of our team, our teamtaking care of Jen.
Nancy Barrow (07:33):
And how did that alter her? Did she go into a
career that would help people?
Barbara Rubin (07:38):
Oh yes, she sure did. She became a speech
language pathologist. Wow. Sheloves working, she works in
school system. She loves workingwith kids who have needs. She
she's really gifted at what shedoes, but she really has an
(08:02):
understanding of what the familyis going through also, because
it's just not like the personthat you're working with. It's
their family, and how do theywork together? And she really is
excellent at having empathy andunderstanding for what parents
(08:24):
are dealing with when theirchild has a disability.
Nancy Barrow (08:26):
And you said earlier that it, you know, it
affects the whole family. So howdid this affect you? Were you
working at the time when Jen'saccident happened? And what
about your husband? Was heworking as well?
Barbara Rubin (08:38):
I was a self employed. So when the accident
happened, I was just like, I'mdone. You know, this is what I
have to do. Fortunately for ourfamily, my income was to buy the
extras and to be there forcollege educations and stuff. So
(09:01):
we didn't need my income tocover daily expenses. So I had
the freedom to be with Jen. Myhusband, Mark, was a teacher, so
he had worked long enough thatbasically he could take off
whatever time was needed. He wasthere the summer, you know, with
(09:25):
me, like every day and all that,but there were a lot of
surgeries follow up, surgeriesthat were needed, a lot of
things that required him to takeoff of work. And we were very
fortunate that he had that paidleave that he could take what he
(09:46):
needed. But not everybody isthat fortunate, and we
understand that.
Nancy Barrow (09:52):
Yeah, that, I mean, you are very lucky. And
some people, when they have tomake a decision between taking
care. Of a loved one, they haveto quit their job if they're
going to do that, and so that'swhere our plan, and New York's
plan, also where you are, comesinto play, right? It really
helps bridge that gap. So youdon't have to quit your job. You
(10:15):
could have a little incomereplacement for up to 12 weeks
to help with caregiving, whichyou were, you were her primary
caregiver really. Tell me whatthe treatments were for Jen. Did
she go just to one therapyplace, or did she go to several
different places? And what washer Connecticut connection?
Barbara Rubin (10:33):
She wasn't at a high enough level to qualify for
a lot of places. So the place wefound was amazing.
Unfortunately, they're no longerin business, but they were a
perfect placement for her, as Isaid, she had to relearn
(10:56):
everything, and they documentedit with video and everything so
carefully so you could reallygage the progress, which, at
that time, insurance companiescovered you, as long as you were
making progress. I think thathas since changed, and it's now
(11:16):
you are given a certain lengthof time, and that's it, you're
done. So we were fortunate thatwe 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,
(11:39):
also learning to eat, which wasa real challenge. She didn't
know what food even was. Justdidn't understand the world she
was in. And then even when shelearned to eat, recognizing what
was edible and what wasn't shedidn't know. So they did music
(12:03):
therapy. They did, you know,massage therapy. They did a lot
of extra things that weren'ttypical of a lot of places. And
the really wonderful thing forour family was this facility
every Sunday, had a brunch forthe families. And for free, you
(12:29):
came in and you were with otherpeople who were going through
the exact same thing. So for ourfamily, we kind of had group
therapy.
Nancy Barrow (12:39):
Yeah, it was a support group for you.
Barbara Rubin (12:41):
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 wedidn't understand. That was a
lifesaver for our family aftershe was there for, I think it
(13:05):
was a year and a half, she hadgotten to a high enough level.
She wasn't acute care anylonger. She needed to be moved
to a next level. She was not acandidate to be home. She
required 24 hour a daysupervision, and you know, just
(13:26):
she was in constant motion anddidn't understand, was it hazard
to her or a danger? So westarted looking for the next
level, which was a group home,and thanks to the New York Brain
(13:46):
Injury Association, they helpedto direct us to placements that
would be appropriate. And wefound the place in Danbury,
Connecticut, actuallyBrookfield, Connecticut. It was
called DayTar at the time, andit has since become Ability
Beyond Disability. And they workwith a variety of group homes
(14:12):
defending on the level of carethat you need. Some of their
homes have nurses on hand.
Others just have somebody comeand check in on them once a week
so they cover all the differentlevels. She wasn't in the
nursing level, but she was inthe low functioning level of
needing this constantsupervision. This is the crux of
(14:35):
what my book is about, is theunique caregiving that she
required and how we built thisamazing life for her, given a
severe disability. And becauseshe was so unique in not
understanding what we. And beingable to verbalize things. It
(15:01):
was, you know, being able tothink outside of the box and and
try new things and beadventuresome. And that's what
we looked for in caregiverswithin their system to work with
Jen.
Nancy Barrow (15:23):
I think I told you about Connecticut Paid Leave's,
caregiver leave, and we alsocover chronic conditions like
TBI. So you really could havebenefited through a program like
this, if it was around when thishappened to your daughter. And
it would have been great if youwere in Connecticut as well. You
could take up to 12 weeks ofincome replacement to take care
of your daughter, and since itwas a chronic condition, you
(15:46):
could do this every calendaryear, and it could be 12 weeks
in a block leave, like all atonce, or intermittent leave, or
if you were working reducedschedule, like if you had to
take afternoons off, or thingslike that. I love the
flexibility of our program. Buthow important would a program
like this have been to you backthen?
Barbara Rubin (16:03):
Like I said, we were fortunate that my husband
had the leave time. We weren'tdependent on my income. So I can
say I knew other people whowould have benefited
tremendously from that, becausethey didn't have those
advantages. And, you know, Iknow of people who even had a
(16:30):
mild TBI that didn't getdiagnosed as they should have,
lost their jobs and really werestrapped to cover their expenses
and to be able to get the carethey needed so they are more
able to identify a mild TBI nowthan they were then. And so I
(16:59):
know people this program wouldhave helped.
Nancy Barrow (17:02):
What advice would you give a parent who has the
ability to have these kind ofprograms that weren't available
and you were lucky enough not toneed?
Barbara Rubin (17:12):
You need to take advantage of every program
that's available, because you'regoing to need help. I think
recognizing that you can't do itall alone, taking the help where
you can get it, and certainlyfor the person that's in you
know, you've got to think ofthem for the long term, what
(17:33):
their needs are. And you know,money goes a long way to making
things doable, giving them a newlife, helping the family
recover, because it is a hugefinancial burden. And you know,
any any help that you can getshould be well received.
Nancy Barrow (17:58):
That's great. Tell me. Why did you write this book?
Did you always want to write abook?
Barbara Rubin (18:04):
No, and I never considered myself a writer. I
was encouraged by a friend towrite this to get the story out.
He says, It's too important of astory not to have others know.
And again, it revolved aroundthe kind of caregiving that was
done for Jen. And so I was veryresistant at first, and he's
(18:30):
like, Well, look, do do anoutline, and I'll get somebody
to do it for you, because thestory needs to be told. And as I
started out wanting what neededto be said and had, I'm like,
Okay, I'm the one who has towrite this. The reason I wrote
it was to help others. And invarious opportunities I've had
(18:54):
to meet with readers or doprograms with readers, I've
heard amazing stories, and I'veheard how it has helped people
in a lot of different ways.
Sometimes it was helpful to knowthat they could be such a strong
advocate for this person that itwas okay to stand up to the
(19:15):
establishment and say, No,that's not right. Let's work on
making this better. That ananother interesting thing that
came out that it's okay to askfor help and to say, I can't do
it alone, and for parents tosay, I can't take care of them
totally by myself. It's okay toplace them in a facility or a
(19:42):
group home and help them rebuilda life there, knowing I don't
have the energy or the means todo it at home, but I can better
serve them by being an advocatefor them and making sure they
get what they need, maybesomewhere else. So, you know,
(20:06):
for a lot of people, that's areal hard thing to accept.
Nancy Barrow (20:12):
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, nothaving your daughter in your
home,
Barbara Rubin (20:21):
Absolutely, absolutely. And you know, I knew
one family who, after readingthe book, had been struggling
with a, you know, an adult childat home, and said, We're going
to give a group home a try,because we can see how you they
(20:43):
can build a life there. And it'snot like they're you're not part
of their life anymore, butthat's kind of a normal
transition for a young adult tomove out of the nest and helping
them to rebuild a life.
Nancy Barrow (21:01):
It's really interesting how you said that
people reacted to your book. Andit must be so satisfying that
you are helping other people.
Barbara Rubin (21:10):
Absolutely, that's the reward. And I've been
in groups where people shareeven with their community. They
say, Oh, I had a brother, andnone of my friends here know
this, who had a TBI, and Ididn't know how to share that
information with others. Youknow, people opening up. It was
(21:31):
like it gave them permission toopen up.
Nancy Barrow (21:34):
It's really quite amazing what your whole family
has been through. You didn'thave to go to, like, family
therapy, but basically, you saidthat the group therapy that you
went through that was where youfound the best healing for
yourself.
Barbara Rubin (21:50):
Absolutely, yeah.
And before that, if somebodysaid they had to go to group
therapy, I really didn'tunderstand the benefits of that.
But having people say Iunderstand, and they really do.
You know, it makes a lot ofdifference.
Nancy Barrow (22:11):
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 mentalhealth visits, and there's a lot
that you could have utilizedfrom a program like Connecticut
Paid Leave. And I know New Yorkhas a paid leave program as
well. So I'm thankful that theseprograms are here for people
(22:33):
today who may be going throughwhat you're going through. Tell
me a little bit about Jen before17, before the accident. Tell me
what she was like.
Barbara Rubin (22:43):
She was a very soft spoken, gentle kind of
person. She was very noncompetitive. She liked sports,
she liked to play tennis, butshe wasn't going to be great
(23:03):
because she wasn't thataggressive. You know, she was a
beautiful skier, but, you know,unlike her sister, who was very
competitive, and, you know, wason the race team, Jennifer,
like, danced down the hill. Imean, she was a beautiful skier.
(23:24):
She was working and driving, andlife was really good. She was
getting ready to go into hersenior year of high school. She
had an amazing boyfriend whostayed with us through much of
this, we're still in contactwith him. That's lovely all
(23:46):
these years later, you know, solife was really good for Jen.
She was excited about life, andshe had gotten to the point
where she had, you know, she hadher own money, her own car. And
you know, she and her sistercould go on little outings
together. They were reallyclose. And you know, it was life
(24:11):
was amazing. It was wonderful.
It was perfect, until it wasn't.
Nancy Barrow (24:16):
Until it wasn't, What did you learn about
yourself through Jen's accidentand her TBI and her disability.
Barbara Rubin (24:25):
Well I learned I have strong character to have
come out of it and be okaymentally, because I know most
families struggle when they havea family member that goes
through this, it can beshattering for a family. So I
(24:47):
learned I'm also a problemsolver that I really didn't know
before, because typicaltherapies didn't work for Jen.
We had to figure out. Theirways, and often the
professionals, didn't have thetime to devote to the research
(25:07):
and the thinking and all that Ihad that time. I made that time,
and I looked for solutions wherethere didn't seem to be any.
Didn't know that, and didn'tknow I was the fighter that I
was to stand up for her rightsand what she needed.
Nancy Barrow (25:30):
That's beatiful.
What would you like people totake away from this podcast?
Barbara Rubin (25:35):
Well, I hope it encourages them to reach out,
ask for help, take it where youcan get it. Be resourceful, but
certainly, programs like yourshelp people get to the next
(25:57):
step. You know, it takes awaythe worry, maybe of money so
that you can focus on either yougetting better, or your family
member getting better, or yourfriend, whoever it may be, use
your energy that way. And youknow, let programs like yours
(26:20):
help with the resources.
Nancy Barrow (26:22):
How can people listening get your book, More
Than You Can See (26:24):
A mother's Memoir?
Barbara Rubin (26:26):
It's available everywhere you can buy books.
You know, if you go into yourlocal bookstore, they'll order
it for you. You can buy itonline. It's on Amazon. It's
virtually everywhere you can buya book.
Nancy Barrow (26:41):
It's wonderful.
Any last thoughts that you'dlike people to know?
Barbara Rubin (26:44):
Well, I want to just thank you for having
podcasts like this, making thisinformation available for
listeners, for families outthere that are struggling. And
you know, I appreciate all thepeople that work with helping
(27:04):
people who have disabilities orillnesses or whatever, because
it's tragic when people have totry to do it alone, don't have
resources available to them,because it's life altering when
those programs are there.
Nancy Barrow (27:24):
Thank you, Barbara Rubin for being on The Paid
Leave Podcast.
Barbara Rubin (27:27):
Thank you for having me.
Nancy Barrow (27:28):
And to learn more or to apply for benefits please
go to ctpaidleave.org. This hasbeen another edition of The Paid
Leave Podcast. Please like andsubscribe so you'll be notified
about new podcasts that becomeavailable. Connecticut Paid
Leave is a public act with apersonal purpose. I'm Nancy
Barrow, and thanks forlistening.
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