October 27, 2025 • 49 mins
“When doctors said ‘never,’ one mother proved them wrong. Hear how Jane Fischer’s daughter Suzy defied all odds.
In this heartfelt interview, Betsy Wurzel talks with Jane Fischer, author of If You Knew Suzy: Pushing Past the Boundaries of Never with Carol Ann Ross. Jane shares her journey as the mother of Suzy, who was born with severe brain abnormalities. Doctors said Suzy would never walk, talk, or live independently—but with love, faith, and persistence, Suzy proved them wrong. Diagnosed with Joubert Syndrome, Suzy became the oldest known person with the condition at age 51, inspiring everyone she met. Jane’s book celebrates her daughter’s life and offers guidance for families facing similar challenges.
🎧 Listen to this episode of Chatting with Betsy to discover how one mother’s love and advocacy helped her daughter defy all odds.
💜 If You Knew Suzy reminds us that every person deserves dignity, respect, and the chance to shine. 💡 At Passionate World Talk Radio, we believe real conversations matter.
📌 Subscribe and follow so you never miss an inspiring new episode!
Become a supporter of this podcast: https://www.spreaker.com/podcast/chatting-with-betsy--4211847/support.
🎙 Passionate World Talk Radio Network LLC — Where real conversations matter.
In this heartfelt interview, Betsy Wurzel talks with Jane Fischer, author of If You Knew Suzy: Pushing Past the Boundaries of Never with Carol Ann Ross. Jane shares her journey as the mother of Suzy, who was born with severe brain abnormalities. Doctors said Suzy would never walk, talk, or live independently—but with love, faith, and persistence, Suzy proved them wrong. Diagnosed with Joubert Syndrome, Suzy became the oldest known person with the condition at age 51, inspiring everyone she met. Jane’s book celebrates her daughter’s life and offers guidance for families facing similar challenges.
🎧 Listen to this episode of Chatting with Betsy to discover how one mother’s love and advocacy helped her daughter defy all odds.
💜 If You Knew Suzy reminds us that every person deserves dignity, respect, and the chance to shine. 💡 At Passionate World Talk Radio, we believe real conversations matter.
📌 Subscribe and follow so you never miss an inspiring new episode!
Become a supporter of this podcast: https://www.spreaker.com/podcast/chatting-with-betsy--4211847/support.
🎙 Passionate World Talk Radio Network LLC — Where real conversations matter.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:01):
Hello, everyone, this is Betsy Worzel. You're a host of
Hinting with Betsy, a pastia Roll Talk Radio Network, a
subsidiary of Global.
Speaker 2 (00:10):
Media Network LLC.
Speaker 1 (00:13):
I were a mantras to educate, enlightened, and entertain. The
views of the guest may not represent.
Speaker 2 (00:21):
Those are the hosts of the station, Folks.
Speaker 1 (00:23):
I get excited every time I do a show, and
today I'm like over the moon excited. And I'll tell
you why I have with me today a wonderful woman,
Jane Fisher, who wrote a book. This book will touch
your heart, and I'll tell you if it doesn't touch
(00:46):
your heart.
Speaker 2 (00:47):
Then you don't have one.
Speaker 1 (00:50):
The name of her book is if You Knew Susie
Pushing Past the Boundaries of Never James Fisher and her
last name is spelled sish Or became a learning consultant.
Speaker 2 (01:07):
She was very active.
Speaker 1 (01:08):
She was a teacher of the handicapped, a learning consultant.
If they're giving birth to her child, Susie, who had
severe neurological deficiencies, Jane serves as an advocate for thousands
of other special needs children and their families.
Speaker 2 (01:26):
Jane was very active, and.
Speaker 1 (01:27):
I'll tell you, folks, There's nothing more proactive or anyone
more proactive than a mother who is angry because people
aren't listening to her about her child. And a mother
will mothers, I'm telling you, your mama Beer Clause will
(01:48):
come out to fight for your child.
Speaker 2 (01:51):
And that's just the way it is.
Speaker 1 (01:53):
But I want to welcome the wonderful Jane Fisher the
Shiny with Betsy and welcome Jane.
Speaker 3 (02:03):
Hi, Betsy, so nice to be with you today.
Speaker 2 (02:07):
Oh like my.
Speaker 1 (02:11):
New or welcome your book, Jane. I laughed, I cried.
I thought I was in the hospital.
Speaker 2 (02:21):
Rooms with you. I thought I was. I felt like
I was you in a way. It's just a phenomenal book.
Speaker 1 (02:31):
What motivated you to write this part warming book, inspiring book?
Speaker 3 (02:39):
Well, that's a question I'm asked very often, and basically,
Susie now, who is fifty one years old, as you outlined,
I have been involved with special in special education for
fifty one years from the moment she was born. I
(02:59):
was teaching at the time, and of course then went
on to bet my master's in special education and then
my certifications the learning consultants. It was oh, watching Susie,
and we'll talk about all that. Watching her struggle and
watching her overcome and hearing all the naysayers and the
very gloomy prognosis, and then watching her succeed and defy
(03:24):
the odds and fight her fence in life. I wanted
to document all that she went through, and it was
very important to me through the years to make sure
that she just didn't live and then pass through this
life and not have future generations know all about Anne Susie.
(03:48):
I wanted to make sure that her life was memorialized,
and that was my name objective. It more into another
whole set of goals because as I wrote about Susie's life,
it became very apparent that she had so many lessons
(04:10):
to teach others. And her life has always been through
her own strife and her own hardship. It's always been
about helping others, teaching others, setting an example for others.
And it was my mission through this book to help
anyone who has any kind of challenges, parents, especial needs children,
(04:33):
parents with medical problems who you'll individuals with medical challenges
and you'll read about all of this in the book,
How you can survive, and most of all, to never
give up. And that was my motivation for writing this
book to really really set an example through Susie's life
(04:54):
for other people to forgeohn.
Speaker 1 (04:58):
Oh, definitely, who does Jane, You did a fantastic job.
And please hug Susie for me, because I wish I
could meet you both in person. Susie found so sweet,
she had such determination, and yes, our children with special
(05:19):
needs teach us and Susie surprised the doctors. They told
you she would never do things like, you know, walking
if I remember she walked.
Speaker 2 (05:35):
Uh, she just defied what people, what the doctors told you.
Speaker 1 (05:42):
Uh. And that's a determined mom. You know, you went
through a lot and trying to get her diagnosis. And
we could speak on that. So if I pronounced an
ain't correctly, Susie was diagnosed with Joe beer.
Speaker 3 (06:02):
Yes, well that came much later. So let me back
up a little bit and I will tell you so.
I have three children. My daughter Beth was two and
a half years old when Susie was born, and my
son will talk about later on. He is ten years younger.
(06:23):
Susie is a middle child. She was born on July eighteenth,
nineteen seventy four, and basically I had a very normal,
very boring actually pregnancy, and she was born with many
abnomalies in and of itself would have not men very much,
(06:44):
but put together seemed to indicate that there was some
type of syndrome. Now, I think it's important to realize
that I was all of twenty four years old at
the time. Again, fifty one years ago I was. She
was born with extra digits on both hands, which was
well removed surgically the next day. Her head was out
(07:06):
of proportion with her body. You couldn't see it by
looking at her, but the chart showed that there was
a There was a gross anomaly in the size of
her head. She had a very poor suck. We were
I was unable to nurse her because she couldn't latch on.
And again, none of these characteristics would have been afforded.
(07:30):
But put together, it indicated she became very joined. If
it indicated if my baby had problems. No one was
telling me anything initially, but I didn't see her. They
didn't bring her to me till seven seven hours later,
and I knew something was wrong. I had already had
(07:50):
a baby.
Speaker 2 (07:51):
I knew.
Speaker 3 (07:52):
I knew that, you know, I should be holding my
baby in my arms and when they did bring her
to me, all I saw was precious little girl. You know,
it was love at first sight. And then they began
telling me little by little that, you know, she had issues.
My brother, who was doing his residency and pediatrics ironically
(08:16):
came into my room with my pediatricianist five o'clock the
next morning and began telling me that my baby had
issues that they didn't. They didn't know if she could
see because she wasn't following light.
Speaker 2 (08:30):
And.
Speaker 3 (08:32):
Within a few weeks the prognosis was very grave. We
had They sent me to a doctor at Columbia Presbyterian
who was worlds ringing out, a pediatric neurologist who basically,
based on a lot of the testing that he had done,
told me that my baby would never walk, probably never talk,
(08:53):
probably never learn very much, and basically advice that because
I had a two and a half year old, because
I had a husband, and because I was so young
and would have other babies, I might be best looking
for a residential placement for her. Well that's a I
(09:14):
didn't know what it meant, but I knew one thing.
My baby was not going to a residential placement. My baby.
I knew that my baby was coming home with me,
and I was going to begin to fight. I had
no idea what that meant. It was, you know.
Speaker 1 (09:33):
Right, and you know what Jane and they weren't talking
about fifty one years ago.
Speaker 2 (09:42):
First of all, they didn't.
Speaker 1 (09:43):
Really listen to women, and right, you didn't hear about advocacy.
There was no rights for children who had disabilities.
Speaker 3 (09:55):
Absolutely absolutely, and as matter of fact, I was. I
know that I was thought of as an hysterical woman
who was unrealistic and was in for a devastating life.
And I didn't care what they thought. I mean, I
(10:19):
didn't have time, I didn't have strengds to care what
they thought. As they say, there was no Google, there
was no computer, and why I only I really knew
that whatever her potential was, we were going to find
a way to reach it and maximize it. Now, keep
in mind, I did have this two and a half
year old, darling little girl who needed me too and
(10:41):
was a very anxious little girl, but was coming home
with this new baby, which we all know is you know,
it's traumatic for any toddler, but when you have it,
and you know who needs so much help. But I
began to read through a phone calls and if you
remember that old fashioned thing called telephone books.
Speaker 1 (11:02):
You know, yes, about your fingers still the walking.
Speaker 3 (11:11):
Right, exactly exactly.
Speaker 2 (11:14):
That was my that was my google, that's right.
Speaker 3 (11:20):
It was my looking back how how our lives? So yeah, drastically.
But I had found in what they called an infant
stimulation program. It was about an hour and a half away.
We lived in New Jersey. This was in Flemington, New Jersey,
and it was a program to more or less teach
(11:42):
mothers how to work with infants. Now today it's very commonplace,
there's infant stimulation almost in everything lore hospital, but then
it was it was unheard of. And and and my brother,
who again was a doctor at that time, and the
doctor's here said, how are you going to do that?
(12:03):
Every day you're going to draw to flu I had
to be there by eight o'clock in the morning. And
you know again, I never thought how I was going
to do it. It was just going to be done.
It was just going fun. Somehow we were going to
find a way. I had an extraordinary mother who was here,
drove an hour a day to get to my house
(12:24):
to take care of my two and a half year old.
I was very blessed to have her support. I had
a husband who was also very supportive. We went through
a lot of trials and tribulations our marriage, and it's
all in the book. You know when you're try in trouble,
so it doesn't necessarily lead to harmony. In fact, it could.
Speaker 2 (12:47):
It's true, you know.
Speaker 1 (12:51):
That's that's how Jane, that's how I loved about your book.
Like your your book, I mean, stand all of you
for all that you've done for Susie. Uh. You remind
me of me in a lot of ways. You're feisty,
you you stand up for yourself and your mama. There
(13:14):
Claus will come out and you want to be heard. You.
I want people to put this in perspective. Jane will
for her daughter at a time where there was not
the I e. P.
Speaker 2 (13:29):
At a time.
Speaker 1 (13:29):
Where children with disabilities didn't have rights. This was new
territory that you want. You are what I call you
broke down the doors. You know, it's always someone who
has to break down that door or break that window
surguratively speaking for other people. And I admire you and
(13:51):
you know what, well you just said it's it's isn't
it the truth? You don't know how you're going to
do something, but we do it. And then you look
at and like, how did I ever do that?
Speaker 2 (14:02):
How I do it? I know I do that.
Speaker 1 (14:04):
Now I'm thinking, you know, how did I ever get
myself ready and my husband ready and at the doctor's
at ten o'clock? Because I could barely get myself ready now,
so I stand in awe of you. Jane, go ahead.
Speaker 3 (14:26):
I don't know what is the word betty or or paintiness.
I'm not sure. I as I say I and I
just try to preface it. You know, when I was
growing up, I was very quiet, me too. I grew
(14:47):
into extraordinary, brilliant brothers who you know, were so accomplished,
and I was you know, I was a girl again,
girls were.
Speaker 2 (14:58):
They weren't value right?
Speaker 3 (15:01):
You know. My goal was to find a go to
college and find a husband. You know, yes, but my
parents were wonderful, wonderful people, but they were if you
would have told them that I was going to become
an outspoken advocate for what was known as the Baracouda.
(15:21):
You know it was not my child.
Speaker 1 (15:26):
I love it. I like Jay, let's you know what
that that is true? Because I was quiet too, and
I let people push me over.
Speaker 2 (15:35):
But you know, like Josh, Josh was my foundation.
Speaker 1 (15:41):
I guess you could say I didn't always being an
advocate for him. I just knew if I didn't speak up,
he wasn't going to get what he needed.
Speaker 2 (15:51):
And it was up to me and me alone.
Speaker 1 (15:53):
Because my husband wasn't going to speak up forget that,
he wasn't going to do it. And you know, when
you have people telling you, like I had my family,
my parents telling me, oh, you know, you're looking for trouble. Oh,
you know, it hurts us that you're taking Joshua a neurologist.
Speaker 2 (16:12):
That hurts you.
Speaker 1 (16:13):
What do you think is doing to me my older brother?
You know, back then IN diagnosed my brother. My older
brother's four years and a half years older than me.
I know I didn't diagnose back then Jane, and.
Speaker 2 (16:31):
He would be seventy two now.
Speaker 1 (16:35):
There was something that he had some kind of learning disability.
He had something going on, but it wasn't diagnosed back then.
Speaker 2 (16:44):
But he was a hard worker and he you know,
was able to work and drive.
Speaker 1 (16:51):
But I just think that, you know, when at a time,
especially you know, Josh was born nineteen eighty four, your
daughter was born in you said nineteen seventy one.
Speaker 3 (17:04):
Or seventy four, seventy four, Yeah, yeah, seventy.
Speaker 1 (17:07):
Four, it was, you know, ten year differences there was.
There wasn't much different. I think when Josh was born
and people didn't believe me, like we know as mothers
that there's something amiss with our child, and that's not
because we don't love them. It's because we love them.
(17:28):
We're in tune to them that we know, right. And
then when the you know, and I don't know Jane,
like Josh was, you know, he looks normal, go look
and sons have to say so myself, but I don't know,
(17:49):
like is it I don't know which is harder, which
is easier? When you know at birth that your child
has difficulties or will have difficulties, or you think that
they were parentheses quotes normal and you find out that
they're not, and your life readjust.
Speaker 2 (18:06):
And we go through aggrieving.
Speaker 1 (18:09):
Your book is very authentic and I and I want
to say, you don't sugarcoat.
Speaker 2 (18:15):
And I love that you're a Jersey girl. Love it
and you know you we tell it like it is.
We do. Yeah, we're sometimes not too tactfully.
Speaker 3 (18:29):
Right, you know what, I've been criticized somewhat that, But
there's no point writing this book if you're going to sugarcoat,
if you're not going to be open and honest, and
don't write the book. You know, as they said, we
went through hard times. I talk about my marriage, I
talk about the siblings, I talk about you know, the
(18:51):
the issues I had with the school systems. It was
all part of life and it's all the journey. And
you know, through Susie. Actually, Susie gave me a voice,
as I think you just said with yourself. You know,
she transformed me into something that I never ever believed
(19:16):
that I would be. You know, I became I started
a special education PETA. And I'm not touting my myself
believing in fact there's anything. I'm very self effacing, but
I was driven. I was driven through Susie to help
so many others because they need advocates. No one's going
(19:39):
to do no one's going to do it other than
those people who are involved and who have been touched themselves. True,
and and you know, case in point, when what we
we went on to become very involved in and I
would I would leave the doctor's office is with my
(20:01):
husband and I would be crying and he would say,
why are you crying? You know, looking at myself? Didn't
you did you just hear this? Thus back ABC and
he's looking for he didn't say that, and you know it.
It was like and then I go home and I
talked to my mother and my mother in law and
they would say, oh, the doctors don't know what they're
(20:23):
talking about. So I was like the christ the Erah
I was am I crazy? You know? What is what
is the people? You know? And that's how you really
you you blieve you you begin to question your own sanity. Yes,
but do you know do you know what I mean?
Speaker 1 (20:42):
Oh?
Speaker 2 (20:42):
I definitely yeah.
Speaker 1 (20:44):
Or you're told like I was told, Oh, you're an
over protective I was told I was ever protective. You know,
blame the mother Josh was lazy, that he was lazy,
and they make it as if it's your fault or your.
Speaker 2 (21:01):
Child's fault, right, that's what got me mad.
Speaker 3 (21:05):
Yes, yes, absolutely absolutely, And you know I made up
my mind Betsy and I very early that I could
buy lots of stock and Kleenex and cry for the
rest of her life or fight and even if it
meant fighting against the world. In fact, our early song
with Susie was you and Me against the world. Yeah,
(21:28):
and sometimes it really felt that.
Speaker 2 (21:31):
Way, you know, yeah, oh I love you. Jane fel
the same way.
Speaker 3 (21:38):
But you know, fight we did. And she was so fearless.
She was she wanted to achieve. She had an older
sister who she had she knew what she should be doing,
but she was her body wouldn't let her attain it.
But she never gave up, and she continued to to
(22:01):
fight and to to She was steadfast and unfultering in
what she wanted to do, and you had no choice
but to just fight along with her. She's still that way,
you know, to a point you can almost be frustrated sometimes.
But she's an incredible human being. She's bold, she's audacious,
(22:23):
she's just she's just so incredibly incredibly I don't as
I keep saying, but brave and bold and fearless and
gallant in her desire to want to accomplish. And you know,
we've really been touched by some wonderful educators, but we've
(22:47):
also been deterred by those who felt that she would
never do to accomplished. I remember years ago we were
with the child study team, and of course you know
her child study team is for those don't Their teams
of psychologists and learning consultants and social workers. And we
were we were in her annual review and we were
(23:12):
writing her IEP, which is their individual educational Plans, and
I wanted her to be introduced to the computer. And
one of the professionals on the team said, a computer.
You're lucky if she learns a tire shoe. And I said,
are you kidding me? I said, do you even know?
How much do you know her? And they said, well,
(23:35):
we tested her. I said, yeah, okay, and that's a
test score that just tells you what she can do.
Do you have any idea what she can do? Now,
you have to understand Susie's EQUE, that's her emotional intelligence
is much higher than her IQ. And all this is
(23:56):
in the book. If you just lookut her I do,
which highlights all her deficit areas, you'll think she's very limited.
And she is very limited in many ways, but she's
also very accomplished in other ways. And if you don't
give her a chance to show what she can achieve,
(24:18):
she'll never she never wills. So it's and I said,
I want her to try to learn the computer. When
she looked at me, she said, you're very unrealistic. And
I said, well perhaps, but you are very You're you
just don't know her, and you're a naysayer and you're
very negative. Well ps, she is so adept at the
(24:43):
computer that that she frankly, she teaches me right now.
Speaker 1 (24:48):
I love it, you know, I just I know, Jane.
I just love all the stories and folks, we're not
going to give everything about Susie away. Susie, well touch
your heart, the just the joy, and I love the
(25:09):
pictures in the book, Susie getting Bozmisfoot, Susie being at
the weddings, she was you know, I loved how your
the siblings you know, helped Susane encouraged her and just
a loving of supportive family and the community. And she
(25:31):
showed everyone you know, hey, I'm here. And when she
was sick and she would ask other people how they're doing.
Speaker 2 (25:40):
That just touched me.
Speaker 1 (25:43):
I mean, Susan's been through a lot and she still
cares about even in her illness, she cared, she cares
about other people.
Speaker 2 (25:54):
Wow.
Speaker 3 (25:55):
Well, just just to be and I know, I don't
know how much more time we have. Betsy saw just
very very brief when after all accomplishing so much, Susie
was diagnosed with end stage kidney failure. She's had two
kidney transplants, and in between the clans and clan she's
had thyroid cancer. She has had so many medical issues.
(26:16):
But in the book and you just alluded she has.
She has been the model for so many others in
the hospital to keep the spirits up, to get them
out of bed, to keep walking. She has Every doctor
with the heartiest of horse has fallen in love with her.
And I truly believe that she is one of the angels.
She's the angels to make a difference in this world.
(26:41):
You have mentioned and I want to just mention it
very briefly. She was diagnosed ten years ago. We never
knew why she had all her special needs and her
medical problems. But ten years ago there was a brand
new syndrome that was that was found. Its calls Ubart syndrome.
Speaker 2 (26:58):
She was my.
Speaker 3 (27:00):
Husband and I want to be tested. It's a very
very rare syndrome. Both parents have to have an auto
recessive gene. She was the oldest in the world in
the world known to have Shubert's because it's such a
rare genetics syndrome. I'm sure there are others, but because
it's so rare, we don't know of other people. And
(27:21):
she's now become the post a child for Juberts. They're
all watching.
Speaker 1 (27:27):
Wow.
Speaker 3 (27:28):
So the book, this is all in the book. It's
an incredible story of when life gives you lemons, how
truely to make sweet lemonade, and how incredible the human
being This one young lady has the effect that she's
(27:49):
had on hundreds and hundreds of other people. And I
urge anyone who has any kind of challenges or hardships
or obstacles that they think they just can't overcome, just
read her story and you will learn how to jump
over mountains.
Speaker 2 (28:07):
Truly. I love, Yes, I love a story of how Susie.
Speaker 1 (28:12):
Wanted to go over to camp because Y went to camp,
and how she you know, the director didn't you know,
it's kind of hesitant, And then you brought Susie up
there and she ends up going to the slip away camp,
I mean, and she lived in an apartment you bought
(28:33):
like a house or apartment, right, and she had you know,
that experience, Susie gave me inspiration. Susie motivated me, and
I understand, you know what. That's how I I still
understand a lot of how you've felt, Jane, because I
(28:55):
felt that Josh not at this world. He is my angel.
He is my special Earth angel. And what a blessing
to me. Yes, and you know when Josh works. He
can't drive, but he does work. He works for a
(29:20):
school bus company. And they love him.
Speaker 2 (29:23):
They, yes, they'll compliment.
Speaker 1 (29:26):
They compliment that he went to a picnic and they said, oh,
Josh is so nice. He does such a good job
raising him. He's so point mm.
Speaker 3 (29:34):
Hmmmm, yes, yes, Well we share stories then, because she
is an aide to an aid in a in a
pre school. And one thing that she has an uncanny memory,
called herself a rain woman because she.
Speaker 2 (29:53):
So.
Speaker 3 (29:53):
The famous story was they were putting in cookies, haminash
and cookies and he said to her, Glorry that you,
in fact, his name was Josh. You can't put that
in Josh's beb Don't do that, Jack Glory said, Susie, Why,
what's wrong? She said, he's allergic to nuts. Do not
put that in his beds? And she said, sure enough,
(30:13):
she had pulled out his file and she said, oh
my god, She said, Susie, you were the only one
who remembered that he was allergic to me. So she
called me up that I have to tell him she
has such a memory. And and this was this was
the same young woman who they told me would never
learn to use a keyboard because she couldn't remember the
(30:35):
letters on the keyboard. So I hear you. You know,
we we tend to we tend to be quick to
decide what these children will never be able to do.
But yeah, yeah, you know, we're a lot less We're
a lot less optimistic about giving them the chance to try,
(30:58):
you know. And if it's that's what our mission is bestice,
we have to advocate for them.
Speaker 1 (31:05):
Yes, yes, I just you know when I read your
book and the folks you had to buy this book
because it is just so inspirational and motivational, and you know,
you laugh you I've laughed and I cried, And I
(31:26):
think to how to support that you had in your
community for so did it be boz mitzfood? And how
your synagogue, your rabbi, the Jewish community centers that you
went to, UH supported her desire to be boz mitzfood.
(31:47):
That is so incredible and I feel soon you're not
suiting or Jane. I feel Jane that when places all worship,
no matter where you worship, when we don't address the
population of people who have special needs, people who have
(32:10):
Alzheimer's or whatever their diagnosis is, when we ignore these people,
we are missing out on a blessing. Absolutely, they bless us.
We learn from them, and I just say kudos. I
whether it's like wow, what a community. I just think
(32:33):
that it's beautiful, the pictures, Susie's attitude.
Speaker 2 (32:39):
I just love Susie.
Speaker 1 (32:41):
I just love Susie for reading this book and what
a just so inspiring. I mean she would even tell
you my mom, okay, right, yes, you know.
Speaker 2 (32:54):
I just think that it's just an aspiring book.
Speaker 1 (32:59):
My dad used to say to me that thing, and
I thought I was a pretty good kid. Thought I
was sarcastic, you know, as a teenager. Excuse me, you know,
with my mouth. But he would say that thing. I
hope you have a child just like you, so you
know the aggravation that you give your mother and father. Well,
(33:20):
Josh is a blessing. He never gave me a hard time.
Speaker 2 (33:27):
He is just.
Speaker 1 (33:30):
Really I feel like he's an angel. I don't know
if you ever read the Deal or you're familiar with
Dale Evans and she had a child with Down syndrome,
and you know, and I forgot the name of the
book read many many years ago, and that was inspiring.
But I think I'm not sure if she's the one
(33:53):
that said you're going on a different trip, Okay, you
want to take a trip to but she's the one
she's compares it to go into Holland, I think, And
you learn to readjust and what our children can teach
us is just amazing. And I'll tell you, Jane and
(34:16):
I worked in the State Institution for the Developmentally Disabled.
Speaker 2 (34:22):
Because back then.
Speaker 1 (34:24):
When it was built in nineteen sixty five, that's what
they did.
Speaker 2 (34:28):
They you know, these.
Speaker 1 (34:29):
Families, and many of them could were wealthy from what
I heard, would you know, would put their kids away,
pretend they were never born some of the families.
Speaker 2 (34:39):
But we can learn from.
Speaker 1 (34:44):
Everyone, and I feel that everyone I said it for
all the time my show can be should be treated
with respect and dignity.
Speaker 2 (34:55):
And when.
Speaker 1 (34:57):
You know able body people, when they treat someone with disrespect,
that could be you know, he's in a walker, or
maybe they're blind, or maybe they're using a wheelchair.
Speaker 2 (35:10):
They have brains. Folks don't treat them like they don't exist.
They do exist.
Speaker 1 (35:17):
And I always say, by the grace of God, go
I because all it takes spend up a time, God
forbid an accident, and you could be disabled. How do
you want to be treated? That's what people need to
ask themselves. Jane and I say this a lot on
my show. I don't care if I sound redundant, because
I will always be saying that, treat people how you
(35:42):
would want to be treated. And I was reading your
book and sometimes I think it was a story where
a nurse. I think it was a nurse that was
not so nice Tousia.
Speaker 3 (35:52):
First.
Speaker 2 (35:53):
I love that she turned her right around.
Speaker 3 (35:56):
Yes, yes, you know that's interesting part of many people
who are disabled, unlike us, you know, we get in
the hut. Oh you're not nice to me, I'm not
going to be nice to you. Are Our kids don't
think like that, you know. They they it's black and
white with them, you know, they they if you're not
(36:19):
nice to me, I'll keep trying to be nice to you,
you know, I even said to Susie at one point,
why do you keep saying hello to you? She didn't
even answer you. She said, oh, mom, she probably she
has such a hard life, she said, she you know,
she knew she has you. She has a son in print.
She's a little institoo, so she knows all this, all
(36:40):
these details, and she says, she has such your hard life.
Just be nice, you know, if you keep being nice
to her, she'll she'll come around and lo and behold that.
You know, they're they they're just for the goodness. They're
nothing but pure and good. And you call them Mrs Angels,
That's what they are. Betsy and I, we believe they
(37:01):
were sent to us for to to to protect, to nurture,
to love, to to just continually be cheerleaders for. And
I I don't want to minimize.
Speaker 2 (37:15):
It's a lot of.
Speaker 3 (37:16):
Work that you and I spoke a little bit before
the show. There's a lot of concern about what's going
to happen, and we're not here anymore. That's that's a tremendous,
tremendous uh a pressure. That is a twenty four to
seven thought in our heads. But I wouldn't I wouldn't
trade my my daughter for anything in the world. And
(37:40):
I believe it was my my life's mission. It was
my job to do just what I did. People say
to me, you gave up your whole life. I don't
look at it like that. She is my life, you know,
as you are my other children. And yes, I think
I think we were we were we were. We were chosen,
you know, too, to be the mothers of these angels.
(38:04):
For I'd like to think for special reasons, you know.
Speaker 2 (38:09):
Yes, yes, they will teach us.
Speaker 1 (38:11):
I mean, I will never take anything for granted. You know,
we take so much for granted those who are not
around people that do have difficulties, you know, putting up
tying your shoes or even buttoning your shirt. We take
(38:34):
all that for granted. But it takes time, and you know,
children learn different and everyone has value and worth. When
I worked at the State Institution, I would talk to
the clients and the aide would say, Betsy, who are
you talking to I got talking to the clients. They said, well,
(38:57):
don't you know they can't talk. I said, I know
they can't talk, but do you know they can hear?
And they're human beings. And I would talk to them
and I would tell them exactly what I was doing.
Speaker 2 (39:10):
And Jane, even.
Speaker 1 (39:10):
Though they couldn't talk, they had their own personality. They
loved attention, they loved it. And you know, I have
such a heart for the and I like to use
the word disabled population, but I have a heart for
people who are different. Yes, and you know, I know
(39:35):
their stigmas are still out there about people who are different,
your people who have special needs, however you want to
word it. But everyone needs to be treated with respect
and dignity because it is so important, you know. And
(39:55):
we can teach our children, even if they have learning difficulties,
we could teach them to help other people.
Speaker 2 (40:06):
And Susie had that has that heart to help others.
Speaker 3 (40:10):
Yes, yes, yes, absolutely.
Speaker 2 (40:17):
For a fall.
Speaker 3 (40:20):
You know she would rather she'll help other people. She'll
give her last dying for other people. You know, it
becomes a lesson, you know. I think, yes, you treat
people as you would want to be treated. I think
(40:40):
that is a piece Wow.
Speaker 2 (40:42):
Yes, absolutely, I know that.
Speaker 1 (40:48):
When Josh was in school, I know you talked about
being on a committee. There wasn't a special committee, a
committee for.
Speaker 2 (40:58):
Special ed parents. It was all you know, the regular
pta and our kids will look down on one.
Speaker 1 (41:09):
I had a fight with one principal. Camp can't tell
me this is a coincidence. Out of all the classes
admitted from the year book, it was the class that
had children with disabilities. I called up the principal and
I complained, He goes, no, that was just that was
a mistake.
Speaker 2 (41:30):
You know, I don't discriminate. Blah blah blah. Yeah, that's
what I said. Uh, but we have to advocate for
our children.
Speaker 1 (41:42):
And let me tell you, folks, and Jane, you are
like what I called the You're a very good role model.
And you may not want to look at yourself that way,
but you are. You're a share of to me. When
people are putting you down because you want to fight
for your child, that could get discouraging after a while,
(42:05):
and you do question yourself like you said, Jane, And
we just keep going forward. And you know, I didn't
have Google. I had to do my own research, a
child study team whom I trusted. They weren't going to
tell me about specialist schools that cost the township money.
I had to find that out, which is why support
groups is very important, and getting support that I really
(42:30):
like that in your book, Jane, that you have resources,
a lot of resources in your book for parents guardians.
Speaker 2 (42:43):
I think that is absolutely amazing. It's wonderful. This really, folks.
I grab this book, just grab it, read it.
Speaker 1 (42:58):
And I want to say this that any one is
thinking but going to social work, special education, regular teaching,
you need to read this book. This book should be
in every college of people in the medical field. Read
this book because book knowledge. That's good to have book knowledge.
(43:23):
You know what you need. You need heart knowledge. You
need to feel it in your heart for people and
treat people even you know, and don't look past them
like they're not in a room or can't hear you.
Speaker 2 (43:41):
They hear you.
Speaker 1 (43:43):
Treat them with respect so important. I can't impress that enough.
Speaker 2 (43:48):
Jane. I enjoy talking to you. I could talk to
you for hours. Where can people purchase your book?
Speaker 3 (43:54):
Yeah, it is on sale on amas on website and
Borne's and Noble websites. You can it's also you know,
you could purchase an audio, or you could purchase it
on a kindle or of course the hard copy. And again,
(44:15):
I didn't write this book to be famous or there's
no monetary you know, remuneration. I just want to help
others who are facing challenges, and I believe it's Susie's
plight in life, and I'm just I'm her voice. So
I wish everyone who is and you don't have to
(44:39):
be facing challenges, just going through life's journey. You know,
she teaches us all how to get to the other side.
And thank you so much for giving me this opportunity
to reach out and haven't go into homes and be
able to talk to everyone about life's journey.
Speaker 2 (45:02):
Oh, you are welcome, Janie. It is my pleasure. Well,
how can you want to get in touch with you?
Do you have a website?
Speaker 3 (45:10):
Yes, it's it'd be Jane j n A m as A,
Mary Fisher s I s as in Sam C h
E r at gmails dot Tom.
Speaker 2 (45:29):
Okay great.
Speaker 1 (45:32):
Thank you so much, Jane for knocking down those doors,
for being the person that you are.
Speaker 2 (45:39):
I admire you so much.
Speaker 1 (45:40):
You are a hero to me and I wish I
knew you when I was struggling with accepting Josh's diagnosis
and fighting my own way with the child study team.
Speaker 2 (45:53):
And with doctors. I wish I knew you. I could
definitely have you a friend and support. I wish there
was this book well and yes, well, thank you.
Speaker 1 (46:14):
So much, Jane. Give my regards to Susie. Hugs Susie
for me and tell her she is also a hero
in my book. She is another share of to me
and folks, you're welcome. You know, sometimes we ask ourselves.
I know I used to why me? Why did this
(46:36):
happen to me? Why my child? This guy looks at
the bigger picture. I have whatever supreme being you believe in,
or even even if you don't, here's a bigger picture.
And maybe you were meant to help other people like
Jane and Susie help other people, thousands of people. They
(46:56):
were aspiring thousands of people. And this book. I can't
recommend it enough. It is very inspiring, very hard touching.
I highly recommend it. I think it should be in.
Speaker 2 (47:09):
Every college library.
Speaker 1 (47:12):
I think pediatricians should read this book. Anyone dealing with
children's adults you're facing challenges, read this book. If you
knew Susie pushing past the boundaries of never.
Speaker 2 (47:28):
And I just.
Speaker 1 (47:29):
Want to thank you again Jane Fisher for coming on
writing your books, sharing your story, Susie story, and folks,
a lot of information will be in the blog that
Genie Waite writes, and she's the station manager and produces
the show. And I want to thank Lilank Coldwell, with
(47:49):
CEO of Passionate will Talk Credio Network that makes this
all possible.
Speaker 2 (47:53):
I want to thank you the listeners, Thank you for listening.
Speaker 1 (47:55):
Subscribing if you know not ready subscribe, it is for free.
I'm on Spotify, Spreaker, Amazon Music. You can program Alexa
for Shining with Betsy. I'm here to help you. I'm
here to give you resources to help you have a
better quality of life. And I don't take this opportunity lightly.
I am blessed. I'm grateful to have this opportunity, and
(48:18):
I'm here to help people. James Bush is here to
help people. We need to share our stories and our
experiences to help other people. That's what it's about, human connection.
And as I always say on my show, you can
follow me on Facebook.
Speaker 2 (48:36):
That's thee worzel w orze l And in the world
where it could be anything, Please be kind. Shine your
light right because we need it now more than ever before.
And Jane, you are a shining light. Susie's a shining light,
and I Thank you for that.
Speaker 1 (48:55):
Thank you for bringing kindness and light into this world.
Speaker 2 (49:00):
I appreciate you both so much.
Speaker 3 (49:02):
Thanks.
Speaker 2 (49:03):
This is You're welcome.
Speaker 1 (49:06):
This is Betsy Worzel. You're a host of Chinning with Betsy.
I'm Passion World Talk Radio Network, a subsidiary of Global
Media Network LLC.
Speaker 2 (49:16):
Talk to you soon.
Speaker 3 (49:17):
Bye bye now y bye bye bye
Hello, everyone, this is Betsy Worzel. You're a host of
Hinting with Betsy, a pastia Roll Talk Radio Network, a
subsidiary of Global.
Speaker 2 (00:10):
Media Network LLC.
Speaker 1 (00:13):
I were a mantras to educate, enlightened, and entertain. The
views of the guest may not represent.
Speaker 2 (00:21):
Those are the hosts of the station, Folks.
Speaker 1 (00:23):
I get excited every time I do a show, and
today I'm like over the moon excited. And I'll tell
you why I have with me today a wonderful woman,
Jane Fisher, who wrote a book. This book will touch
your heart, and I'll tell you if it doesn't touch
(00:46):
your heart.
Speaker 2 (00:47):
Then you don't have one.
Speaker 1 (00:50):
The name of her book is if You Knew Susie
Pushing Past the Boundaries of Never James Fisher and her
last name is spelled sish Or became a learning consultant.
Speaker 2 (01:07):
She was very active.
Speaker 1 (01:08):
She was a teacher of the handicapped, a learning consultant.
If they're giving birth to her child, Susie, who had
severe neurological deficiencies, Jane serves as an advocate for thousands
of other special needs children and their families.
Speaker 2 (01:26):
Jane was very active, and.
Speaker 1 (01:27):
I'll tell you, folks, There's nothing more proactive or anyone
more proactive than a mother who is angry because people
aren't listening to her about her child. And a mother
will mothers, I'm telling you, your mama Beer Clause will
(01:48):
come out to fight for your child.
Speaker 2 (01:51):
And that's just the way it is.
Speaker 1 (01:53):
But I want to welcome the wonderful Jane Fisher the
Shiny with Betsy and welcome Jane.
Speaker 3 (02:03):
Hi, Betsy, so nice to be with you today.
Speaker 2 (02:07):
Oh like my.
Speaker 1 (02:11):
New or welcome your book, Jane. I laughed, I cried.
I thought I was in the hospital.
Speaker 2 (02:21):
Rooms with you. I thought I was. I felt like
I was you in a way. It's just a phenomenal book.
Speaker 1 (02:31):
What motivated you to write this part warming book, inspiring book?
Speaker 3 (02:39):
Well, that's a question I'm asked very often, and basically,
Susie now, who is fifty one years old, as you outlined,
I have been involved with special in special education for
fifty one years from the moment she was born. I
(02:59):
was teaching at the time, and of course then went
on to bet my master's in special education and then
my certifications the learning consultants. It was oh, watching Susie,
and we'll talk about all that. Watching her struggle and
watching her overcome and hearing all the naysayers and the
very gloomy prognosis, and then watching her succeed and defy
(03:24):
the odds and fight her fence in life. I wanted
to document all that she went through, and it was
very important to me through the years to make sure
that she just didn't live and then pass through this
life and not have future generations know all about Anne Susie.
(03:48):
I wanted to make sure that her life was memorialized,
and that was my name objective. It more into another
whole set of goals because as I wrote about Susie's life,
it became very apparent that she had so many lessons
(04:10):
to teach others. And her life has always been through
her own strife and her own hardship. It's always been
about helping others, teaching others, setting an example for others.
And it was my mission through this book to help
anyone who has any kind of challenges, parents, especial needs children,
(04:33):
parents with medical problems who you'll individuals with medical challenges
and you'll read about all of this in the book,
How you can survive, and most of all, to never
give up. And that was my motivation for writing this
book to really really set an example through Susie's life
(04:54):
for other people to forgeohn.
Speaker 1 (04:58):
Oh, definitely, who does Jane, You did a fantastic job.
And please hug Susie for me, because I wish I
could meet you both in person. Susie found so sweet,
she had such determination, and yes, our children with special
(05:19):
needs teach us and Susie surprised the doctors. They told
you she would never do things like, you know, walking
if I remember she walked.
Speaker 2 (05:35):
Uh, she just defied what people, what the doctors told you.
Speaker 1 (05:42):
Uh. And that's a determined mom. You know, you went
through a lot and trying to get her diagnosis. And
we could speak on that. So if I pronounced an
ain't correctly, Susie was diagnosed with Joe beer.
Speaker 3 (06:02):
Yes, well that came much later. So let me back
up a little bit and I will tell you so.
I have three children. My daughter Beth was two and
a half years old when Susie was born, and my
son will talk about later on. He is ten years younger.
(06:23):
Susie is a middle child. She was born on July eighteenth,
nineteen seventy four, and basically I had a very normal,
very boring actually pregnancy, and she was born with many
abnomalies in and of itself would have not men very much,
(06:44):
but put together seemed to indicate that there was some
type of syndrome. Now, I think it's important to realize
that I was all of twenty four years old at
the time. Again, fifty one years ago I was. She
was born with extra digits on both hands, which was
well removed surgically the next day. Her head was out
(07:06):
of proportion with her body. You couldn't see it by
looking at her, but the chart showed that there was
a There was a gross anomaly in the size of
her head. She had a very poor suck. We were
I was unable to nurse her because she couldn't latch on.
And again, none of these characteristics would have been afforded.
(07:30):
But put together, it indicated she became very joined. If
it indicated if my baby had problems. No one was
telling me anything initially, but I didn't see her. They
didn't bring her to me till seven seven hours later,
and I knew something was wrong. I had already had
(07:50):
a baby.
Speaker 2 (07:51):
I knew.
Speaker 3 (07:52):
I knew that, you know, I should be holding my
baby in my arms and when they did bring her
to me, all I saw was precious little girl. You know,
it was love at first sight. And then they began
telling me little by little that, you know, she had issues.
My brother, who was doing his residency and pediatrics ironically
(08:16):
came into my room with my pediatricianist five o'clock the
next morning and began telling me that my baby had
issues that they didn't. They didn't know if she could
see because she wasn't following light.
Speaker 2 (08:30):
And.
Speaker 3 (08:32):
Within a few weeks the prognosis was very grave. We
had They sent me to a doctor at Columbia Presbyterian
who was worlds ringing out, a pediatric neurologist who basically,
based on a lot of the testing that he had done,
told me that my baby would never walk, probably never talk,
(08:53):
probably never learn very much, and basically advice that because
I had a two and a half year old, because
I had a husband, and because I was so young
and would have other babies, I might be best looking
for a residential placement for her. Well that's a I
(09:14):
didn't know what it meant, but I knew one thing.
My baby was not going to a residential placement. My baby.
I knew that my baby was coming home with me,
and I was going to begin to fight. I had
no idea what that meant. It was, you know.
Speaker 1 (09:33):
Right, and you know what Jane and they weren't talking
about fifty one years ago.
Speaker 2 (09:42):
First of all, they didn't.
Speaker 1 (09:43):
Really listen to women, and right, you didn't hear about advocacy.
There was no rights for children who had disabilities.
Speaker 3 (09:55):
Absolutely absolutely, and as matter of fact, I was. I
know that I was thought of as an hysterical woman
who was unrealistic and was in for a devastating life.
And I didn't care what they thought. I mean, I
(10:19):
didn't have time, I didn't have strengds to care what
they thought. As they say, there was no Google, there
was no computer, and why I only I really knew
that whatever her potential was, we were going to find
a way to reach it and maximize it. Now, keep
in mind, I did have this two and a half
year old, darling little girl who needed me too and
(10:41):
was a very anxious little girl, but was coming home
with this new baby, which we all know is you know,
it's traumatic for any toddler, but when you have it,
and you know who needs so much help. But I
began to read through a phone calls and if you
remember that old fashioned thing called telephone books.
Speaker 1 (11:02):
You know, yes, about your fingers still the walking.
Speaker 3 (11:11):
Right, exactly exactly.
Speaker 2 (11:14):
That was my that was my google, that's right.
Speaker 3 (11:20):
It was my looking back how how our lives? So yeah, drastically.
But I had found in what they called an infant
stimulation program. It was about an hour and a half away.
We lived in New Jersey. This was in Flemington, New Jersey,
and it was a program to more or less teach
(11:42):
mothers how to work with infants. Now today it's very commonplace,
there's infant stimulation almost in everything lore hospital, but then
it was it was unheard of. And and and my brother,
who again was a doctor at that time, and the
doctor's here said, how are you going to do that?
(12:03):
Every day you're going to draw to flu I had
to be there by eight o'clock in the morning. And
you know again, I never thought how I was going
to do it. It was just going to be done.
It was just going fun. Somehow we were going to
find a way. I had an extraordinary mother who was here,
drove an hour a day to get to my house
(12:24):
to take care of my two and a half year old.
I was very blessed to have her support. I had
a husband who was also very supportive. We went through
a lot of trials and tribulations our marriage, and it's
all in the book. You know when you're try in trouble,
so it doesn't necessarily lead to harmony. In fact, it could.
Speaker 2 (12:47):
It's true, you know.
Speaker 1 (12:51):
That's that's how Jane, that's how I loved about your book.
Like your your book, I mean, stand all of you
for all that you've done for Susie. Uh. You remind
me of me in a lot of ways. You're feisty,
you you stand up for yourself and your mama. There
(13:14):
Claus will come out and you want to be heard. You.
I want people to put this in perspective. Jane will
for her daughter at a time where there was not
the I e. P.
Speaker 2 (13:29):
At a time.
Speaker 1 (13:29):
Where children with disabilities didn't have rights. This was new
territory that you want. You are what I call you
broke down the doors. You know, it's always someone who
has to break down that door or break that window
surguratively speaking for other people. And I admire you and
(13:51):
you know what, well you just said it's it's isn't
it the truth? You don't know how you're going to
do something, but we do it. And then you look
at and like, how did I ever do that?
Speaker 2 (14:02):
How I do it? I know I do that.
Speaker 1 (14:04):
Now I'm thinking, you know, how did I ever get
myself ready and my husband ready and at the doctor's
at ten o'clock? Because I could barely get myself ready now,
so I stand in awe of you. Jane, go ahead.
Speaker 3 (14:26):
I don't know what is the word betty or or paintiness.
I'm not sure. I as I say I and I
just try to preface it. You know, when I was
growing up, I was very quiet, me too. I grew
(14:47):
into extraordinary, brilliant brothers who you know, were so accomplished,
and I was you know, I was a girl again,
girls were.
Speaker 2 (14:58):
They weren't value right?
Speaker 3 (15:01):
You know. My goal was to find a go to
college and find a husband. You know, yes, but my
parents were wonderful, wonderful people, but they were if you
would have told them that I was going to become
an outspoken advocate for what was known as the Baracouda.
(15:21):
You know it was not my child.
Speaker 1 (15:26):
I love it. I like Jay, let's you know what
that that is true? Because I was quiet too, and
I let people push me over.
Speaker 2 (15:35):
But you know, like Josh, Josh was my foundation.
Speaker 1 (15:41):
I guess you could say I didn't always being an
advocate for him. I just knew if I didn't speak up,
he wasn't going to get what he needed.
Speaker 2 (15:51):
And it was up to me and me alone.
Speaker 1 (15:53):
Because my husband wasn't going to speak up forget that,
he wasn't going to do it. And you know, when
you have people telling you, like I had my family,
my parents telling me, oh, you know, you're looking for trouble. Oh,
you know, it hurts us that you're taking Joshua a neurologist.
Speaker 2 (16:12):
That hurts you.
Speaker 1 (16:13):
What do you think is doing to me my older brother?
You know, back then IN diagnosed my brother. My older
brother's four years and a half years older than me.
I know I didn't diagnose back then Jane, and.
Speaker 2 (16:31):
He would be seventy two now.
Speaker 1 (16:35):
There was something that he had some kind of learning disability.
He had something going on, but it wasn't diagnosed back then.
Speaker 2 (16:44):
But he was a hard worker and he you know,
was able to work and drive.
Speaker 1 (16:51):
But I just think that, you know, when at a time,
especially you know, Josh was born nineteen eighty four, your
daughter was born in you said nineteen seventy one.
Speaker 3 (17:04):
Or seventy four, seventy four, Yeah, yeah, seventy.
Speaker 1 (17:07):
Four, it was, you know, ten year differences there was.
There wasn't much different. I think when Josh was born
and people didn't believe me, like we know as mothers
that there's something amiss with our child, and that's not
because we don't love them. It's because we love them.
(17:28):
We're in tune to them that we know, right. And
then when the you know, and I don't know Jane,
like Josh was, you know, he looks normal, go look
and sons have to say so myself, but I don't know,
(17:49):
like is it I don't know which is harder, which
is easier? When you know at birth that your child
has difficulties or will have difficulties, or you think that
they were parentheses quotes normal and you find out that
they're not, and your life readjust.
Speaker 2 (18:06):
And we go through aggrieving.
Speaker 1 (18:09):
Your book is very authentic and I and I want
to say, you don't sugarcoat.
Speaker 2 (18:15):
And I love that you're a Jersey girl. Love it
and you know you we tell it like it is.
We do. Yeah, we're sometimes not too tactfully.
Speaker 3 (18:29):
Right, you know what, I've been criticized somewhat that, But
there's no point writing this book if you're going to sugarcoat,
if you're not going to be open and honest, and
don't write the book. You know, as they said, we
went through hard times. I talk about my marriage, I
talk about the siblings, I talk about you know, the
(18:51):
the issues I had with the school systems. It was
all part of life and it's all the journey. And
you know, through Susie. Actually, Susie gave me a voice,
as I think you just said with yourself. You know,
she transformed me into something that I never ever believed
(19:16):
that I would be. You know, I became I started
a special education PETA. And I'm not touting my myself
believing in fact there's anything. I'm very self effacing, but
I was driven. I was driven through Susie to help
so many others because they need advocates. No one's going
(19:39):
to do no one's going to do it other than
those people who are involved and who have been touched themselves. True,
and and you know, case in point, when what we
we went on to become very involved in and I
would I would leave the doctor's office is with my
(20:01):
husband and I would be crying and he would say,
why are you crying? You know, looking at myself? Didn't
you did you just hear this? Thus back ABC and
he's looking for he didn't say that, and you know it.
It was like and then I go home and I
talked to my mother and my mother in law and
they would say, oh, the doctors don't know what they're
(20:23):
talking about. So I was like the christ the Erah
I was am I crazy? You know? What is what
is the people? You know? And that's how you really
you you blieve you you begin to question your own sanity. Yes,
but do you know do you know what I mean?
Speaker 1 (20:42):
Oh?
Speaker 2 (20:42):
I definitely yeah.
Speaker 1 (20:44):
Or you're told like I was told, Oh, you're an
over protective I was told I was ever protective. You know,
blame the mother Josh was lazy, that he was lazy,
and they make it as if it's your fault or your.
Speaker 2 (21:01):
Child's fault, right, that's what got me mad.
Speaker 3 (21:05):
Yes, yes, absolutely absolutely, And you know I made up
my mind Betsy and I very early that I could
buy lots of stock and Kleenex and cry for the
rest of her life or fight and even if it
meant fighting against the world. In fact, our early song
with Susie was you and Me against the world. Yeah,
(21:28):
and sometimes it really felt that.
Speaker 2 (21:31):
Way, you know, yeah, oh I love you. Jane fel
the same way.
Speaker 3 (21:38):
But you know, fight we did. And she was so fearless.
She was she wanted to achieve. She had an older
sister who she had she knew what she should be doing,
but she was her body wouldn't let her attain it.
But she never gave up, and she continued to to
(22:01):
fight and to to She was steadfast and unfultering in
what she wanted to do, and you had no choice
but to just fight along with her. She's still that way,
you know, to a point you can almost be frustrated sometimes.
But she's an incredible human being. She's bold, she's audacious,
(22:23):
she's just she's just so incredibly incredibly I don't as
I keep saying, but brave and bold and fearless and
gallant in her desire to want to accomplish. And you know,
we've really been touched by some wonderful educators, but we've
(22:47):
also been deterred by those who felt that she would
never do to accomplished. I remember years ago we were
with the child study team, and of course you know
her child study team is for those don't Their teams
of psychologists and learning consultants and social workers. And we
were we were in her annual review and we were
(23:12):
writing her IEP, which is their individual educational Plans, and
I wanted her to be introduced to the computer. And
one of the professionals on the team said, a computer.
You're lucky if she learns a tire shoe. And I said,
are you kidding me? I said, do you even know?
How much do you know her? And they said, well,
(23:35):
we tested her. I said, yeah, okay, and that's a
test score that just tells you what she can do.
Do you have any idea what she can do? Now,
you have to understand Susie's EQUE, that's her emotional intelligence
is much higher than her IQ. And all this is
(23:56):
in the book. If you just lookut her I do,
which highlights all her deficit areas, you'll think she's very limited.
And she is very limited in many ways, but she's
also very accomplished in other ways. And if you don't
give her a chance to show what she can achieve,
(24:18):
she'll never she never wills. So it's and I said,
I want her to try to learn the computer. When
she looked at me, she said, you're very unrealistic. And
I said, well perhaps, but you are very You're you
just don't know her, and you're a naysayer and you're
very negative. Well ps, she is so adept at the
(24:43):
computer that that she frankly, she teaches me right now.
Speaker 1 (24:48):
I love it, you know, I just I know, Jane.
I just love all the stories and folks, we're not
going to give everything about Susie away. Susie, well touch
your heart, the just the joy, and I love the
(25:09):
pictures in the book, Susie getting Bozmisfoot, Susie being at
the weddings, she was you know, I loved how your
the siblings you know, helped Susane encouraged her and just
a loving of supportive family and the community. And she
(25:31):
showed everyone you know, hey, I'm here. And when she
was sick and she would ask other people how they're doing.
Speaker 2 (25:40):
That just touched me.
Speaker 1 (25:43):
I mean, Susan's been through a lot and she still
cares about even in her illness, she cared, she cares
about other people.
Speaker 2 (25:54):
Wow.
Speaker 3 (25:55):
Well, just just to be and I know, I don't
know how much more time we have. Betsy saw just
very very brief when after all accomplishing so much, Susie
was diagnosed with end stage kidney failure. She's had two
kidney transplants, and in between the clans and clan she's
had thyroid cancer. She has had so many medical issues.
(26:16):
But in the book and you just alluded she has.
She has been the model for so many others in
the hospital to keep the spirits up, to get them
out of bed, to keep walking. She has Every doctor
with the heartiest of horse has fallen in love with her.
And I truly believe that she is one of the angels.
She's the angels to make a difference in this world.
(26:41):
You have mentioned and I want to just mention it
very briefly. She was diagnosed ten years ago. We never
knew why she had all her special needs and her
medical problems. But ten years ago there was a brand
new syndrome that was that was found. Its calls Ubart syndrome.
Speaker 2 (26:58):
She was my.
Speaker 3 (27:00):
Husband and I want to be tested. It's a very
very rare syndrome. Both parents have to have an auto
recessive gene. She was the oldest in the world in
the world known to have Shubert's because it's such a
rare genetics syndrome. I'm sure there are others, but because
it's so rare, we don't know of other people. And
(27:21):
she's now become the post a child for Juberts. They're
all watching.
Speaker 1 (27:27):
Wow.
Speaker 3 (27:28):
So the book, this is all in the book. It's
an incredible story of when life gives you lemons, how
truely to make sweet lemonade, and how incredible the human
being This one young lady has the effect that she's
(27:49):
had on hundreds and hundreds of other people. And I
urge anyone who has any kind of challenges or hardships
or obstacles that they think they just can't overcome, just
read her story and you will learn how to jump
over mountains.
Speaker 2 (28:07):
Truly. I love, Yes, I love a story of how Susie.
Speaker 1 (28:12):
Wanted to go over to camp because Y went to camp,
and how she you know, the director didn't you know,
it's kind of hesitant, And then you brought Susie up
there and she ends up going to the slip away camp,
I mean, and she lived in an apartment you bought
(28:33):
like a house or apartment, right, and she had you know,
that experience, Susie gave me inspiration. Susie motivated me, and
I understand, you know what. That's how I I still
understand a lot of how you've felt, Jane, because I
(28:55):
felt that Josh not at this world. He is my angel.
He is my special Earth angel. And what a blessing
to me. Yes, and you know when Josh works. He
can't drive, but he does work. He works for a
(29:20):
school bus company. And they love him.
Speaker 2 (29:23):
They, yes, they'll compliment.
Speaker 1 (29:26):
They compliment that he went to a picnic and they said, oh,
Josh is so nice. He does such a good job
raising him. He's so point mm.
Speaker 3 (29:34):
Hmmmm, yes, yes, Well we share stories then, because she
is an aide to an aid in a in a
pre school. And one thing that she has an uncanny memory,
called herself a rain woman because she.
Speaker 2 (29:53):
So.
Speaker 3 (29:53):
The famous story was they were putting in cookies, haminash
and cookies and he said to her, Glorry that you,
in fact, his name was Josh. You can't put that
in Josh's beb Don't do that, Jack Glory said, Susie, Why,
what's wrong? She said, he's allergic to nuts. Do not
put that in his beds? And she said, sure enough,
(30:13):
she had pulled out his file and she said, oh
my god, She said, Susie, you were the only one
who remembered that he was allergic to me. So she
called me up that I have to tell him she
has such a memory. And and this was this was
the same young woman who they told me would never
learn to use a keyboard because she couldn't remember the
(30:35):
letters on the keyboard. So I hear you. You know,
we we tend to we tend to be quick to
decide what these children will never be able to do.
But yeah, yeah, you know, we're a lot less We're
a lot less optimistic about giving them the chance to try,
(30:58):
you know. And if it's that's what our mission is bestice,
we have to advocate for them.
Speaker 1 (31:05):
Yes, yes, I just you know when I read your
book and the folks you had to buy this book
because it is just so inspirational and motivational, and you know,
you laugh you I've laughed and I cried, And I
(31:26):
think to how to support that you had in your
community for so did it be boz mitzfood? And how
your synagogue, your rabbi, the Jewish community centers that you
went to, UH supported her desire to be boz mitzfood.
(31:47):
That is so incredible and I feel soon you're not
suiting or Jane. I feel Jane that when places all worship,
no matter where you worship, when we don't address the
population of people who have special needs, people who have
(32:10):
Alzheimer's or whatever their diagnosis is, when we ignore these people,
we are missing out on a blessing. Absolutely, they bless us.
We learn from them, and I just say kudos. I
whether it's like wow, what a community. I just think
(32:33):
that it's beautiful, the pictures, Susie's attitude.
Speaker 2 (32:39):
I just love Susie.
Speaker 1 (32:41):
I just love Susie for reading this book and what
a just so inspiring. I mean she would even tell
you my mom, okay, right, yes, you know.
Speaker 2 (32:54):
I just think that it's just an aspiring book.
Speaker 1 (32:59):
My dad used to say to me that thing, and
I thought I was a pretty good kid. Thought I
was sarcastic, you know, as a teenager. Excuse me, you know,
with my mouth. But he would say that thing. I
hope you have a child just like you, so you
know the aggravation that you give your mother and father. Well,
(33:20):
Josh is a blessing. He never gave me a hard time.
Speaker 2 (33:27):
He is just.
Speaker 1 (33:30):
Really I feel like he's an angel. I don't know
if you ever read the Deal or you're familiar with
Dale Evans and she had a child with Down syndrome,
and you know, and I forgot the name of the
book read many many years ago, and that was inspiring.
But I think I'm not sure if she's the one
(33:53):
that said you're going on a different trip, Okay, you
want to take a trip to but she's the one
she's compares it to go into Holland, I think, And
you learn to readjust and what our children can teach
us is just amazing. And I'll tell you, Jane and
(34:16):
I worked in the State Institution for the Developmentally Disabled.
Speaker 2 (34:22):
Because back then.
Speaker 1 (34:24):
When it was built in nineteen sixty five, that's what
they did.
Speaker 2 (34:28):
They you know, these.
Speaker 1 (34:29):
Families, and many of them could were wealthy from what
I heard, would you know, would put their kids away,
pretend they were never born some of the families.
Speaker 2 (34:39):
But we can learn from.
Speaker 1 (34:44):
Everyone, and I feel that everyone I said it for
all the time my show can be should be treated
with respect and dignity.
Speaker 2 (34:55):
And when.
Speaker 1 (34:57):
You know able body people, when they treat someone with disrespect,
that could be you know, he's in a walker, or
maybe they're blind, or maybe they're using a wheelchair.
Speaker 2 (35:10):
They have brains. Folks don't treat them like they don't exist.
They do exist.
Speaker 1 (35:17):
And I always say, by the grace of God, go
I because all it takes spend up a time, God
forbid an accident, and you could be disabled. How do
you want to be treated? That's what people need to
ask themselves. Jane and I say this a lot on
my show. I don't care if I sound redundant, because
I will always be saying that, treat people how you
(35:42):
would want to be treated. And I was reading your
book and sometimes I think it was a story where
a nurse. I think it was a nurse that was
not so nice Tousia.
Speaker 3 (35:52):
First.
Speaker 2 (35:53):
I love that she turned her right around.
Speaker 3 (35:56):
Yes, yes, you know that's interesting part of many people
who are disabled, unlike us, you know, we get in
the hut. Oh you're not nice to me, I'm not
going to be nice to you. Are Our kids don't
think like that, you know. They they it's black and
white with them, you know, they they if you're not
(36:19):
nice to me, I'll keep trying to be nice to you,
you know, I even said to Susie at one point,
why do you keep saying hello to you? She didn't
even answer you. She said, oh, mom, she probably she
has such a hard life, she said, she you know,
she knew she has you. She has a son in print.
She's a little institoo, so she knows all this, all
(36:40):
these details, and she says, she has such your hard life.
Just be nice, you know, if you keep being nice
to her, she'll she'll come around and lo and behold that.
You know, they're they they're just for the goodness. They're
nothing but pure and good. And you call them Mrs Angels,
That's what they are. Betsy and I, we believe they
(37:01):
were sent to us for to to to protect, to nurture,
to love, to to just continually be cheerleaders for. And
I I don't want to minimize.
Speaker 2 (37:15):
It's a lot of.
Speaker 3 (37:16):
Work that you and I spoke a little bit before
the show. There's a lot of concern about what's going
to happen, and we're not here anymore. That's that's a tremendous,
tremendous uh a pressure. That is a twenty four to
seven thought in our heads. But I wouldn't I wouldn't
trade my my daughter for anything in the world. And
(37:40):
I believe it was my my life's mission. It was
my job to do just what I did. People say
to me, you gave up your whole life. I don't
look at it like that. She is my life, you know,
as you are my other children. And yes, I think
I think we were we were we were. We were chosen,
you know, too, to be the mothers of these angels.
(38:04):
For I'd like to think for special reasons, you know.
Speaker 2 (38:09):
Yes, yes, they will teach us.
Speaker 1 (38:11):
I mean, I will never take anything for granted. You know,
we take so much for granted those who are not
around people that do have difficulties, you know, putting up
tying your shoes or even buttoning your shirt. We take
(38:34):
all that for granted. But it takes time, and you know,
children learn different and everyone has value and worth. When
I worked at the State Institution, I would talk to
the clients and the aide would say, Betsy, who are
you talking to I got talking to the clients. They said, well,
(38:57):
don't you know they can't talk. I said, I know
they can't talk, but do you know they can hear?
And they're human beings. And I would talk to them
and I would tell them exactly what I was doing.
Speaker 2 (39:10):
And Jane, even.
Speaker 1 (39:10):
Though they couldn't talk, they had their own personality. They
loved attention, they loved it. And you know, I have
such a heart for the and I like to use
the word disabled population, but I have a heart for
people who are different. Yes, and you know, I know
(39:35):
their stigmas are still out there about people who are different,
your people who have special needs, however you want to
word it. But everyone needs to be treated with respect
and dignity because it is so important, you know. And
(39:55):
we can teach our children, even if they have learning difficulties,
we could teach them to help other people.
Speaker 2 (40:06):
And Susie had that has that heart to help others.
Speaker 3 (40:10):
Yes, yes, yes, absolutely.
Speaker 2 (40:17):
For a fall.
Speaker 3 (40:20):
You know she would rather she'll help other people. She'll
give her last dying for other people. You know, it
becomes a lesson, you know. I think, yes, you treat
people as you would want to be treated. I think
(40:40):
that is a piece Wow.
Speaker 2 (40:42):
Yes, absolutely, I know that.
Speaker 1 (40:48):
When Josh was in school, I know you talked about
being on a committee. There wasn't a special committee, a
committee for.
Speaker 2 (40:58):
Special ed parents. It was all you know, the regular
pta and our kids will look down on one.
Speaker 1 (41:09):
I had a fight with one principal. Camp can't tell
me this is a coincidence. Out of all the classes
admitted from the year book, it was the class that
had children with disabilities. I called up the principal and
I complained, He goes, no, that was just that was
a mistake.
Speaker 2 (41:30):
You know, I don't discriminate. Blah blah blah. Yeah, that's
what I said. Uh, but we have to advocate for
our children.
Speaker 1 (41:42):
And let me tell you, folks, and Jane, you are
like what I called the You're a very good role model.
And you may not want to look at yourself that way,
but you are. You're a share of to me. When
people are putting you down because you want to fight
for your child, that could get discouraging after a while,
(42:05):
and you do question yourself like you said, Jane, And
we just keep going forward. And you know, I didn't
have Google. I had to do my own research, a
child study team whom I trusted. They weren't going to
tell me about specialist schools that cost the township money.
I had to find that out, which is why support
groups is very important, and getting support that I really
(42:30):
like that in your book, Jane, that you have resources,
a lot of resources in your book for parents guardians.
Speaker 2 (42:43):
I think that is absolutely amazing. It's wonderful. This really, folks.
I grab this book, just grab it, read it.
Speaker 1 (42:58):
And I want to say this that any one is
thinking but going to social work, special education, regular teaching,
you need to read this book. This book should be
in every college of people in the medical field. Read
this book because book knowledge. That's good to have book knowledge.
(43:23):
You know what you need. You need heart knowledge. You
need to feel it in your heart for people and
treat people even you know, and don't look past them
like they're not in a room or can't hear you.
Speaker 2 (43:41):
They hear you.
Speaker 1 (43:43):
Treat them with respect so important. I can't impress that enough.
Speaker 2 (43:48):
Jane. I enjoy talking to you. I could talk to
you for hours. Where can people purchase your book?
Speaker 3 (43:54):
Yeah, it is on sale on amas on website and
Borne's and Noble websites. You can it's also you know,
you could purchase an audio, or you could purchase it
on a kindle or of course the hard copy. And again,
(44:15):
I didn't write this book to be famous or there's
no monetary you know, remuneration. I just want to help
others who are facing challenges, and I believe it's Susie's
plight in life, and I'm just I'm her voice. So
I wish everyone who is and you don't have to
(44:39):
be facing challenges, just going through life's journey. You know,
she teaches us all how to get to the other side.
And thank you so much for giving me this opportunity
to reach out and haven't go into homes and be
able to talk to everyone about life's journey.
Speaker 2 (45:02):
Oh, you are welcome, Janie. It is my pleasure. Well,
how can you want to get in touch with you?
Do you have a website?
Speaker 3 (45:10):
Yes, it's it'd be Jane j n A m as A,
Mary Fisher s I s as in Sam C h
E r at gmails dot Tom.
Speaker 2 (45:29):
Okay great.
Speaker 1 (45:32):
Thank you so much, Jane for knocking down those doors,
for being the person that you are.
Speaker 2 (45:39):
I admire you so much.
Speaker 1 (45:40):
You are a hero to me and I wish I
knew you when I was struggling with accepting Josh's diagnosis
and fighting my own way with the child study team.
Speaker 2 (45:53):
And with doctors. I wish I knew you. I could
definitely have you a friend and support. I wish there
was this book well and yes, well, thank you.
Speaker 1 (46:14):
So much, Jane. Give my regards to Susie. Hugs Susie
for me and tell her she is also a hero
in my book. She is another share of to me
and folks, you're welcome. You know, sometimes we ask ourselves.
I know I used to why me? Why did this
(46:36):
happen to me? Why my child? This guy looks at
the bigger picture. I have whatever supreme being you believe in,
or even even if you don't, here's a bigger picture.
And maybe you were meant to help other people like
Jane and Susie help other people, thousands of people. They
(46:56):
were aspiring thousands of people. And this book. I can't
recommend it enough. It is very inspiring, very hard touching.
I highly recommend it. I think it should be in.
Speaker 2 (47:09):
Every college library.
Speaker 1 (47:12):
I think pediatricians should read this book. Anyone dealing with
children's adults you're facing challenges, read this book. If you
knew Susie pushing past the boundaries of never.
Speaker 2 (47:28):
And I just.
Speaker 1 (47:29):
Want to thank you again Jane Fisher for coming on
writing your books, sharing your story, Susie story, and folks,
a lot of information will be in the blog that
Genie Waite writes, and she's the station manager and produces
the show. And I want to thank Lilank Coldwell, with
(47:49):
CEO of Passionate will Talk Credio Network that makes this
all possible.
Speaker 2 (47:53):
I want to thank you the listeners, Thank you for listening.
Speaker 1 (47:55):
Subscribing if you know not ready subscribe, it is for free.
I'm on Spotify, Spreaker, Amazon Music. You can program Alexa
for Shining with Betsy. I'm here to help you. I'm
here to give you resources to help you have a
better quality of life. And I don't take this opportunity lightly.
I am blessed. I'm grateful to have this opportunity, and
(48:18):
I'm here to help people. James Bush is here to
help people. We need to share our stories and our
experiences to help other people. That's what it's about, human connection.
And as I always say on my show, you can
follow me on Facebook.
Speaker 2 (48:36):
That's thee worzel w orze l And in the world
where it could be anything, Please be kind. Shine your
light right because we need it now more than ever before.
And Jane, you are a shining light. Susie's a shining light,
and I Thank you for that.
Speaker 1 (48:55):
Thank you for bringing kindness and light into this world.
Speaker 2 (49:00):
I appreciate you both so much.
Speaker 3 (49:02):
Thanks.
Speaker 2 (49:03):
This is You're welcome.
Speaker 1 (49:06):
This is Betsy Worzel. You're a host of Chinning with Betsy.
I'm Passion World Talk Radio Network, a subsidiary of Global
Media Network LLC.
Speaker 2 (49:16):
Talk to you soon.
Speaker 3 (49:17):
Bye bye now y bye bye bye
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Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
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