Amy's Story.

When Amy’s son Parker was just four months old, he was diagnosed with an eye condition. “The maternal health nurse looked straight at me and said, “are you ready for this?,” she said. It can take years to adjust to life changing news, and it was no different for Amy and her husband Glen. Find out how Amy came to realise that she’s proud of the fact Parker is blind.    

See omnystudio.com/listener for privacy information.

Episode Transcript

S1 (00:08):
I said that I was concerned about his eyes and
she looked straight at me and said, Are you ready
for this?

S2 (00:20):
When a family is without warning, suddenly confronted with extreme
vision loss, baby is pretty, well, blind. The impact is
frightening and perhaps devastating. In time now, things far from
more bad are better explained as different. Amy Sohn can
attest to this. Amy can explain to us the experience

(00:41):
of introducing young Parker to the world with support from family,
friends organization such as Vision Australia and various government services.
Tell us about Parker. When did you first notice that
there was something wrong with his eyes?

S1 (00:58):
Parker was around about three months old when I first
noticed that something was a little bit different about his eyes.
I'd actually kept that information to myself for just over
a month. I felt I needed time as a mother
to prepare because I knew whatever was going to come
was going to be quite big. Two days before and
four month old maternal health visit, I told my husband

(01:20):
that something is terribly wrong with our son and you
need to start preparing yourself. I went to that maternal
health appointment and she said, Is there anything that you're
concerned about? I said that I was concerned about his
eyes and she looked straight at me and said, Are
you ready for this? And in that moment, I knew

(01:41):
it was going to be way bigger than anything I
could have imagined.

S2 (01:44):
And she obviously knew and was waiting for the time
to talk to

S1 (01:48):
you about it. Yeah, I've had it quite a traumatic
event with Parker as well, unfortunately, and I was quite
sick for quite a few months, so she was waiting
until I was ready. Parker's eye condition is called X-linked juvenile,
Britton discusses. It's a hereditary condition that causes his retinas
to split. He also has nystagmus, which is an involuntary

(02:11):
eye movement.

S2 (02:12):
Was there any history of it in the family that
you knew about, or was all this a surprise?

S1 (02:16):
At the time when Parker was born, we weren't aware
of anybody else in the family having this condition. I
did pull everybody in my family who wore glasses and said,
What your eye condition called? My cousin was actually the
first one who brought up excellent juvenile retinas glasses, and
he said they think I may have had this. But

(02:36):
he was 20 at the time when he found out
he was traveling overseas and he didn't. We took that
information to the eye doctors in Melbourne, and almost immediately
they confirmed that is what it is. We just happened
to get the genetic testing and all of that out
of the way before we could 100 percent confirm what
that was. It was a difficult time. I remember about

(02:59):
a week after we found out I went to my
girlfriend's place to drop something off and she asked me
how I was feeling and I said, I'm just I'm
completely numb. There was nothing, you know, because I had
to cook dinner and clean the house because I had
to clean the house. Yeah. There was no happy times,
there was just sad crying time, so we couldn't talk

(03:23):
about it, Glenn and I were always for the first
nine months to a year on completely different pages about
what to do about Parker. Our relationship suffered hugely thighs.
All right. This is the problem. Let's go ahead. Let's
do everything we can to fix it. Let's, you know,
let's move forward. And every time I would talk to Glenn,

(03:45):
he would just snap. I don't want my child to
be light and end of conversation. So extremely lonely and
extremely difficult. It was traumatizing, really.

S2 (03:57):
How did you go about getting help

S1 (04:00):
after we got the initial diagnosis from Melbourne Children's Clinic?
They put us in touch with Vision Australia and I
think within four days or so Vision Australia had come
to our household. They were amazing. And there's no other
way to put it. They were incredible.

S2 (04:17):
Someone from the children's services came and spent time with you.

S1 (04:21):
Yeah, one of the early childhood educators came to our household.

S2 (04:26):
What was that experience like with her?

S1 (04:28):
It was good. It was daunting. Of course, you're going
into a whole new world. But they assured us that
it's an open, free space. You know, you don't have
to watch what you say or anything you don't mean
to offend anybody. But no, I didn't want a blind child,
and there were more than willing to answer any questions
that we had.

S2 (04:49):
So was that reassuring or helpful?

S1 (04:52):
I think it took a few months before we started
to trust them and letting somebody into your home for
the first time, and it takes a bit of time
to build up their relationship, especially when you're at rock
bottom to bring somebody in and tell them all of
your fears and what you're scared of, you know, and
they tell all it will be okay. And when you're

(05:13):
in that moment and someone tells you, you know, time
will make it feel better, you don't believe them. So
it does take a little bit of time to build
up that trust. But once you're there, they are the
most invaluable people to have in your life. And that's right,
team definitely saved their marriage, and they've definitely helped with
making parts of the independent little boy he is today.

(05:34):
They're incredible.

S2 (05:35):
What did they offer you in a tangible sort of
a way that people from Vision Australia

S1 (05:40):
definitely did a lot of hand-holding and helping mum and
dad out and being a great support for us. And
with Parker, they suggested some light up toys for him.
He had this little white bunny rabbit that he carried everywhere,
and they suggest that we make the eyes in the
mouth and everything black. So it was white on black
so he could actually see the face. I wouldn't have

(06:02):
thought about that. Not in a million years. A big
part to remember when you've got a child with a
vision impairment of young baby with a vision impairment, they're
going to be OK. They need the mum and dad
to be together and okay to move forward. The baby
is going to be a baby, but I don't really
need any early childhood education right now. So it's more

(06:25):
about making sure that family unit is strong. And at
the time, they had a music program as well. So
this is going back five years now that they had
a lady who would come to your house and should
play the bongo drums and everything and pocket just love
that it was huge. But he's starting to struggle a
lot now, trying to read letters and numbers and things

(06:46):
like that. It is becoming apparent that it's going to
be very difficult to text with him.

S2 (06:52):
Has he been introduced to braille yet?

S1 (06:54):
Park has been doing pretty braille since he was about
six months old, so we've been working on finger dexterity.
Fine motor skills and all of that, and he's learnt
to read, well, I say read his five year old,
so he still doesn't read properly, but he's learnt to
follow braille, two hands for reading and all of those things.

(07:15):
So we've been building up to this moment now where
we're actually starting to write letters, which is really big
stage for him now.

S2 (07:23):
I believe fairly early on he was introduced to what
we might describe as a mobility aid. A little long
white cane

S1 (07:31):
pocket was introduced to his cane at 12 months old,
and he didn't actually walk until he was 18 months.
But as of 12 months old, he took his cane
everywhere with him. That was probably one of the hardest
moments in our whole journey. We got his cane and
I was very excited about it. I wanted it. But

(07:54):
then the night before I had to leave the house,
I had major anxiety about basically telling the world that
my son's blind. I was in tears. I was extremely
upset and I messaged my girlfriends and I said, I
don't know what to do. I have to do this.
I know I have to do this. But I don't

(08:15):
know how to. I don't know, I think one of
the most valuable lessons I've ever had is my girlfriend said,
What would you think if you saw a child with
a cane? And for me personally, I'd say, Hey, look,
there's a kid with a cane, how cute. And I'll
keep walking. And I realized in that moment that it
wasn't going to be as daunting as I thought it

(08:35):
was going to be, and people wouldn't see us any
differently than the rest of the people in the world.
She changed my life in that moment because all that anxiety,
most of the anxiety went away. I wouldn't say all
of it. So once we left the house the next day,
I didn't make eye contact with anybody. We did what
we needed to do. We walked around the shops and

(08:58):
we came home and little bit a little bit. I
did start to look at people's faces. A lot of
those faces looking at me with a big smile on
their face, seeing a little boy with a cane, how cute.
And I would carry on with the day and it
was a it's a beautiful thing. We get stocked everywhere

(09:18):
and everybody gets out of his way, which is a
nice thing as well. They make sure they stay clear
and given the space that he needs.

S2 (09:27):
So in time, you weren't seeing so much the cane
as an indicator to the world that he was blind.
But as the mobility aid, the assist the device for
helping him get around that a cane is,

S1 (09:45):
oh, definitely. So Kevin's been invaluable.

S2 (09:49):
Tinder, how's that going?

S1 (09:51):
How can this start really great with fans? I came
to this very, very supportive of him. He's got his
Brettler in the classroom so I can play around on that.
They talk to all the children about how Park is
slightly different to them and how that they can interact
with him a little bit better as a walking up

(10:11):
to him and telling him, Hi Parker. Amy, do you
want to comply with me? I'm just telling them who
they are and not to just run off on him
because he won't know when they're gone, but they've been
extremely supportive as preparation

S2 (10:26):
for school going.

S1 (10:27):
We're just starting now, so at the moment we're at
the beginning of term two and we're starting to get
all the paperwork and everything together to get him a
teacher's aide and things like that, and he'll start his orientation, mobility,
training around the school in term three. So we're going
to do quite a lot of that. I have a
bit of a phobia about him getting lost. So we're

(10:50):
going to do orientation mobility all over the school in
every place. So if he does get lost, he can
find his way back.

S2 (10:58):
When you're out in public, how do other people react
when they see Parker?

S1 (11:07):
There's a huge range of different reactions that we get.
We get some people who just give you a smile
and you know that kid's cute. You get the people
who want to come up and talk to you. They're
sisters blind and they want to hear about his condition
and things like that, which I'm always happy to hang

(11:27):
out and have a chat with somebody. And occasionally we
kiss the people who look at you and mouth the
word sorry, which is, yeah, a little bit off-putting. I
don't say there to be anything sorry about my son.
More than anything, I'm proud of the fact that he's blind.

S2 (11:47):
What are the supports from government if you had the NDIS?

S1 (11:51):
I guess I have this thing with NDIS about three
years now. Have wonderful crowd daily support, so he is
desiring his early education teacher and things like that. That's great.
We also have a Carer's Allowance, so it's a hundred
and thirty one dollars a fortnight, I think, just over that,

(12:12):
which is incredible.

S2 (12:14):
How do you feel about Parker's future?

S1 (12:17):
I know my son is going to be independent and
he's going to have a job and he is going
to do everything that is like normal site a child
would do. But when I look to the future, that's
when I get a bit nervous because

S2 (12:31):
you don't know yet how that's going to fall into place,
I guess.

S1 (12:34):
All exactly. And Parker's eye conditions degenerative. Wow. I know
it's a bit selfish, but one of the biggest things
in my life growing up was driving. I travel from
when I was 16 to when I was 22 and
I drove everywhere myself and to die. He's not going
to have that. It kills me is still and that's
probably the one thing when I start to think about it,

(12:57):
I have to push it to the back of my
mind because I can't deal with that. We've been introduced
to so many blind and visually impaired people, and we've
actually been advocates for Vision Australia for the last four
or five years. So we've been in the room with
these people and we've seen how they interact. And being

(13:18):
surrounded by the blind and low vision community just makes
you say how open the world is and how much
opportunity there is out there and having a little things
incredible people who are lawyers and doctors and all of
these types of people that we didn't think was possible
and to save them and to get to know them

(13:39):
has been such a huge advantage for us,

S2 (13:43):
for any mums or dads who might be listening. Who
was that warning? Have a child who can't see? What
advice would you have for them?

S1 (13:53):
I think this is the house question. Just do what
you have to do, especially with the young baby. I
think we were very lucky to find out so early
because Parker was fine. We could move on and grieve
and cry and let the world fall down around us
because he didn't know any different. Allow yourself to let

(14:14):
it go. Let it let it all come out, and
your child will eventually start to teach you and start
to show you. How all of that crying and all
of that grieving was really for nothing in the end.

S2 (14:29):
And what has he taught you? Is there any one
thing you can tell me that he's taught you?

S1 (14:33):
The one that always comes to mind is when he
was about two he used to always start a sentence like, Mum,
can I have this mum? Can I go to the bathroom? Mum,
can I brush my teeth? And I was listening to
him one day, and every single time he talked to me,
he would say mum and try to tell me something.
And I realised that he wants me to say Parker

(14:54):
at the beginning of every sentence. He wants me to
acknowledge that I'm talking to him because he can't say
that I've turned my head to talk to him. And
half the time he doesn't even realise I'm in the room,
so I'm

S2 (15:07):
hearing his name from you gives him that instant to
tune in.

S1 (15:11):
Yeah, he knows. I'm talking to him. I'm not talking
to his brother, Parker. You need to go and brush
your teeth now. He will still ignore me, but he
knows it's for him now.

S3 (15:23):
If you or a loved one are experiencing vision loss
and would like to know about the range of options
on offer to you, please call one 800 eight four
seven four six six or visit Vision Australia dot org.