Summary
- I learned that it's vital to create a home that's accessible for everyone, especially when you have a child with special needs like Caffrey, who has Duchenne muscular dystrophy. Making spaces that everyone can use helps the whole family enjoy their home together.
- Duchenne muscular dystrophy is a serious condition where muscles can't repair themselves and weaken over time. This affects the whole body, not just walking, but also breathing and heart functions.
- It's tough when a child like Caffrey learns about having such a condition, but giving the illness a name can actually bring some relief. It helps because it explains why they might feel different.
- As a family, it’s important to focus on living life fully and making the home environment as supportive as possible. This way, every child can have the chance to be independent. For Caffrey, being able to do things like come home from school, get himself a snack, and go to his room on his own is a big goal.
- I discovered that when someone is diagnosed with a condition like Duchenne muscular dystrophy, families have to plan renovations to suit new needs, focusing on making spaces comfortable and accessible.
- Remember, courage and living in the moment are crucial for children with complex needs, helping them to enjoy life despite challenges.
Video
How To Take Action
I would suggest implementing thoughtful changes in your environment to ensure everyone feels at home, especially if you have family members with special needs. Start by assessing the spaces in your home to make them more accessible. Simple changes like rearranging furniture, adding ramps, or widening doorways can make a big difference.
For personal growth, remember the power of understanding and naming your challenges. This can be comforting and help in planning your next steps. Recognizing a problem is the first step towards managing it effectively.
A good way of doing this is by focusing on living in the moment. Embrace courage and cultivate a positive outlook that helps you enjoy life fully, regardless of challenges. This mindset can greatly improve both personal and family well-being.
For small businesses, think about accessibility in your space to widen your customer base and create an inclusive environment. Use signage that is clear and make pathways in your store navigable by everyone, including those with mobility aids.
Lastly, aim for independence. Encourage small tasks that can be handled without support, such as setting up a self-service snack area within easy reach. This approach fosters independence and confidence in children or anyone with additional needs.
By implementing these strategies, you’ll create a home or business environment that supports everyone’s needs, leading to a more inclusive, fulfilling lifestyle for all.
Full Transcript
♪♪ As we've been telling you
the entire season, the family's middle child, Caffrey, has Duchenne
muscular dystrophy, and a big goal
of this renovation is to make this house
as accessible for him as it is for everybody else. A few months ago,
before we broke ground, I sat down with Caffrey's
parents, Billy and Michelle, to learn more
about Caffrey's condition and also their goals
for this renovation. Tell me about the family.
Billy: Five of us, three kids and Michelle and I.
Caffrey is our middle child. He's 12 and has Duchenne
muscular dystrophy. ♪♪ Kevin: Can you tell me
about this disease? Michelle:
Basically, what happens in Duchenne muscular dystrophy is the muscle cells
can't repair themselves. So over time, there's
a weakening of the muscles. And these muscles are affected
everywhere in the body, not just the ones
that help us walk and stand, but also the ones
that help us breathe and have our hearts
be able to beat regularly. So it really takes over
the entire body. This is
a catastrophic diagnosis. It's one where, you know,
over time, you know, like, the numbers of years
that a person will be able to live with this condition
will be limited. And even though
it's not happening today, even though Caffrey will have
many years ahead of him still, you still grieve,
like, the typical life that every parent wants
to have for their kid. ♪♪ Kevin: When did you tell Caffrey
about the disease? Michelle: I think it was
probably a couple of weeks after the official diagnosis, which is when we shared
the news, and I — I'll never forget that weekend
that we told him. You know, in some ways,
it was a bit of a relief for him to actually have a name.
Like, he knew he was different. And it was a little bit
reassuring to know, "Oh, okay, it has a name.
It actually is a real thing. It's not just, you know,
in my head or just something I can't do. It's actually something
that's going on." And so I think there was
a bit of a relief, but then there was a fear
that came from it, too. And it was probably
the next day after we told him
where he asked us, "Am I going to die from this?" Kevin: And what did you say? Michelle: What we said is, you
know, our job is to figure out everything that
we can possibly do to make sure that he can have
a long and fulfilling life, just like we want
for all of our kids. And none of us knows
when we're going to die. So let's not worry
about that right now. Let's focus on what it is
that we can do to make sure that you get
the best care possible. I mean, he's got
so much courage, right? And he just takes it in stride. I have to say, you know, for somebody with
that type of diagnosis, you wouldn't normally expect this type of happy-go-lucky
kind of attitude, just live in the moment
and just be a kid. But that is what he is, and he just does
what he needs to do. Kevin: And so what is it
that you're trying to do with the renovation
specifically? How does it help Caffrey, and what are you hoping
that it's going to do for your family and for him? Michelle: It's very much about how do we make it
more accessible? How do we make it
as comfortable as possible? How do we make sure that
we're thinking about the things that are going to make life
as easy as possible so that all of us,
not just Caffrey, right, but all of us can be together
as a family and enjoy our environment
together. Billy: And be independent.
That's important. His ability to come home
from school by himself, get in, get himself a snack,
go to his room, do whatever he needs to do without anything being
a hindrance at all. And that's why
we're doing this renovation. Caffrey: Whoo! ♪♪ Thanks for watching. This Old House has got a video for just about every home improvement project, so be sure to check out the others. And if you like what you see, click on the subscribe button, to make sure that you get our newest videos right in your feed.
