节目资讯
刊物:空中英语教室
日期:2012-07-17
难易度:Medium
关键字:pioneer, disorder, readjust, exhaustion, hazard
Hi, everybody.
Welcome to Studio Classroom Worldwide.
Thanks for joining us.
My name is Steve.
Now this month Studio Classroom is talking with Uwe Maurer and his wife MaDonna
about caring for a child with special needs.
Uwe currently works with Taiwan Sunshine, an organization that helps bring hope
to families with special-needs children.
The Maurers live in Taipei and with their son Marcus and daughters Matthea and
Megan.
Matthea has a condition called cri-du-chat, which results in some very
challenging physical and mental disabilities.
Let's open our magazines now and continue our conversation with Uwe and MaDonna
on page 33.
Caring for a Child With Special Needs.
How did it affect your family?
The biggest thing was that we had always planned to pioneer schools in rural
China.
We couldn't do that anymore because we needed to be in a place where we could
get good emergency care.
We also needed to be able to get more therapy for her.
Caring for her was a lot of work.
For a while, all of her food was given through a tube, and we couldn't ever
leave her alone because of the choking hazard.
Kids with this disorder often don't sleep much, either.
(Music).
Hello, friends.
Thank you for joining us.
My name is Ryan.
And my name is Kaylah.
And we're back talking with the Maurer family about their daughter Matthea who
does have special needs.
She suffers from a syndrome that has affected her chromosomes and makes... gives
her disabilities in both her physical life and her mental life as well.
Right. So now we're getting some life experience from the Maurers about what it
is like to take care of a child with special needs.
Now yesterday they told us that it was very difficult when they first learned
that she had these disabilities.
But... they were all so relieved when they found out what they were.
But we also saw that it would be, again, difficult for them when they realized
that their child would not be able to do the things that they thought she would
be able to do.
So Ryan, from what you just said, we know that there was a lot of emotion
involved.
Yes.
It's relief. It's grief.
But now they take care of her.
Now they have figured out how to make the family work.
But it was a process.
So Studio Classroom's first question today was:
How did it affect your family?
How did it change your family when you found out that Matthea did have this
disability?
And this is an excellent question because it does affect your family if anyone
in your family has special needs.
Now they start off by saying:
The biggest thing was that we had always planned to pioneer schools in rural
China.
OK. So the biggest thing that was the thing it changed the most was their family
plan to move to rural China.
They were planning on moving to places in China that were not big cities,
that were very far out in the country where there probably wasn't very much
medical care and there was not going to be big access to technology.
That was their goal to go there and to do what?
Well, to pioneer schools.
Now Kaylah, if you "pioneer" something, that means that you start it.
You're the first person to do something with it.
And so they wanted to start schools.
Now usually we think of a pioneer as someone who goes in and will settle land.
It's a wild nature; and a pioneer goes in and builds a home and starts farming
the land and working the land.
That's a pioneer.
So we used "to pioneer" as a verb is to... is that process of going in and being
the first person.
OK. So friends, this is one way that having a child with special needs can
affect your life.
They said now they couldn't do that anymore because they needed to be in a place
where they could get good emergency care.
OK. So as I said, they were going to be in rural areas.
And they were going to be pioneering schools, or building and creating schools
in places that didn't have it.
Now they can't go to these areas because Matthea does need help.
OK. So why is it important to have emergency care?
Now emergency care is care that you get right away and very quickly.
If you have an accident, you call the emergency room, you go to the emergency
room.
That's right away and not planned.
OK. So in case there's a big problem, all of a sudden an unexpected problem,
they needed to have good care.
But they also needed to be able to get more therapy for her.
Now therapy is what you go to to help build up over a long period of time.
So you do exercises, and you practice certain things.
That's therapy to help grow out of some sort of sickness or injury.
Right, to help you rebuild something that maybe you lost.
And so she would need to go to therapy to help her learn how to do most things
that most other people already know how to do.
In short, caring for her was a lot of work.
And it takes a lot of energy to take care of a child with special needs.
That's right.
Now they said for a while, all of her food was given through a tube, and they
couldn't ever leave her alone because of the choking hazard.
OK. So when you eat, you do have to be able to swallow.
And part of her syndrome is the difficulty swallowing.
She has to be taught how to swallow even though most people are born knowing how
to do that.
So they said they had to feed her through a tube.
What is... how would that work, Ryan?
Well, a tube is a long object that is hollow or open on the inside, similar to
what you use when you're drinking something out of a cup.
It's a long thing that you try to drink.
But they had to put this tube into her throat so that they could put food
directly into her.
But that could be a choking hazard.
That's right.
So they said not only was giving her food difficult but also she had to have
people with her all the time because of choking hazard.
Now "hazard" means something that is dangerous and very likely to cause damage.
So if she is choking, that could cause great damage, meaning like she's not able
to breathe.
She's not getting the air she needs.
And because of her syndrome, she could choke very easily.
Yeah. And no one wants to choke.
When you choke, that means you cannot breathe.
So usually that means you're trying to cough maybe because there's something in
your throat.
And if you don't know how to swallow very well, your spit in your mouth would
get in the way and cause you to choke.
All right.
Now kids with this disorder, cri-du-chat, often don't sleep very much, either.
So this is another thing.
People who have this disorder - and a "disorder" is an illness of the mind or of
the body.
So it's another way of saying her sickness, her syndrome.
Exactly.
And this kind... children with this sickness, they don't get very much sleep.
So this could also be a large problem.
That's right. They need to be with her consistently.
And we're going to see how her sleep schedule and her need for them affected
their life.
But first, we're going to take a short break to watch their interview.
Hello again, students.
Today Studio Classroom is talking to Uwe and MaDonna Maurer about their
experiences caring for a child with special needs.
Welcome back, you two.
Thank you.
Tell me, what does caring for Matthea involve?
Well, now it's much simpler than when it was when she was younger.
And when she... after she was diagnosed, we also discovered that she had an
eating problem:
when she would swallow, not all of the food would go down in the right place.
Some of it would go to her lungs.
And that was what was causing her illnesses.
So she had to have a feeding button put into her stomach.
And so we had it to feed tubings, feedings that way.
So... we always had to watch her weight and how much did we feed her and all of
that.
And just the... the problems with that.
But now I just take her to therapies and she eats normal like a normal child.
And those really is what is involved.
What types of help do you receive in caring for Matthea?
We receive therapy at a hospital here.
And we're very happy about Matthea's physical and speech therapy.
And then we have several friends who help us out by watching her and our other
kids so that we can have some time to do things by ourselves as well.
How do you deal with the extra workload?
Well, sleep; then I... but also I think I drink some coffee.
And I try to go... make time to go out with friends.
Uwe is really good about saying: Hey, I'll watch her tonight if you want to get
a coffee or go out with some friends.
So I think that really helps.
Thank you both for sharing with us today.
Students, we're going to be talking to the Maurers again tomorrow about caring
for a child with special needs.
So make sure you come and join us.