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March 23, 2024 17 mins
Kids are incredibly resilient, but it can be hard to be strong all the time when you're suffering from a chronic condition like asthma, epilepsy, or heart problems. The same goes for their parents. Managing health conditions and trying to provide as "normal" a childhood as possible can take a toll on families. Luckily, Zebra Crossings in Dover, NH is there to help! Executive Director Deb Taylor and Program Director Emily Mundy join Nichole this week to talk about their special programs that not just help boost confidence and self-love in children with chronic conditions, but also give families some respite in a safe, understanding environment.
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(00:07):
From WBZ News Radio in Boston.This is New England Weekend. Each week
we come together, we talk aboutall the topics important to you and the
place where you live. It's greatto be back with you again this week.
I'm Nicole Davis. I think I'mpretty on par when I say that
we just want to see the kidsin our lives, happy, healthy,
having so much fun as they getout there and make their way through their

(00:27):
childhood. It's such a blessing towatch them laugh and joke and be silly.
I love my nephews and each oneof them has their own silly spark
of a personality. Kids, though, who have chronic conditions unfortunately, have
to deal with all kinds of challenges. And it's not just the kids,
it's the parents and the siblings whoalso have to navigate those pitfalls. These
kids and families are really resilient,but let's be honest, nobody wants to

(00:51):
be strong all the time. Youjust want to relax and kick back from
time to time and just be aperson, be a kid. Zebra Crossings
in New Hampon is there to helpthese kids do just that, while also
helping to nurture their emotional social andphysical well being. Community means everything to
them, So let's learn more abouthow they're fostering that. Right now on
the show, we have executive directorDeb Taylor program director Emily Mundy. Thank

(01:15):
you both so much for your time. Deb, I'd love to start with
you and if you could just giveus a bit of a rundown about the
origins of Zebra Crossings. The organizationwas founded in two thousand and nine wonderful
woman named Astred Wheelns who worked atsummer camps, and that in that experience
she had the opportunity to work withkids that had chronic medical conditions, and

(01:38):
she just felt very strongly that thereneeded to be more opportunities like that,
So she started a nonprofit that shenamed Zebra Crossings to do just that,
to provide great programs in summer campopportunities for kids with chronic medical conditions.
And so often what comes with thatis the question about the name Zebra Crossings

(02:02):
and what does that all mean?And so our organization's name was inspired by
the zebra, whose black and whitestripes come in different patterns unique to each
zebra, just like a person's everyperson's fingerprints. A common belief is that
the zebra stripes serve as camouflage,and that a herd of zebras stand close

(02:23):
together so that they might appear asa single, more powerful force. And
for children who live with chronic healthconditions, it's very similar. Each child
is a unique individual, but theyalso have a lot in common and they
can relate to each other because oftheir health condition. And in Europe,

(02:44):
a zebra crossing is what's known asa crosswalk in the US, and that's
a zone that provides safe passage tothe other side of a street. At
zebra crossings, our programs serve asa safe place for kids with chronic health
conditions to build self confidence and asense of independence, and those experiences serve
as a crosswalk for the kids wherethey use those things that they've learned about

(03:08):
themselves in their everyday lives. Ilove that because you're talking about not just
safety and safety in numbers and protection, but you're also talking about highlighting the
individuality of these children. And chronicillness impacts everybody differently. You know,
there might be five ten kids withasthma, but they all suffer differently,
right, so you know that meansa lot. I think to families and

(03:30):
talk to me. I guess alittle bit about the impact of families.
I think that as a parent,you are often, especially if you have
a child with different needs or extraneeds, you are on high alert all
the time. And when you arearound other families and when your children are

(03:50):
around other children who share a similarexperience, your level of alertness and anxiety
drops and you're able to to trulybe present. And that's what we want.
We want the kids and their familiesto be present and to be able
to When you're fully present, youcan engage, and you can grow,

(04:12):
and you can participate, and sothat's the overall objective. So, Emily,
you're the program director over at ZebraCrossings and you have so many cool
programs for these kids. I waslooking at the website before I came and
chatted with you, and you've gotday camps, you've got sleepway camps,
You've got all these different cool optionsfor kids. So tell me a little
bit about the different tiers of optionsthat you have for these kids in all

(04:35):
seasons too, not just summertime orspring for day outings. Our goal is
to have something once a month wherethe children and their families and siblings can
participate and it's in the community,it's easily accessible, it's free. We
have done kind of a sampling includesice skating, an art class class the

(05:00):
science center. We're going to dointro to farming next month I'm sorry,
in two months and hopefully see somebaby goats and do some planting. We've
been trying to reinvigorate the programming sinceCOVID and so this year our goal is
to have something every month and it'sbeen very nice to see a lot of

(05:20):
the same families returning to the activitieseach month and forming bonds with each other.
Dab what about the overnight options youhave? So while the day programs
serve as a really fantastic opportunity fora family to get to know us a
little bit. Once you know usand you're feeling good about the relationship that

(05:43):
you've been building with Zebra Crossings andeven before that, right, sometimes people
don't need that practice run. Butwe have people come to these overnight camp
programs, and so we don't haveour own camp. We are hosted by
one of the great outdoor summer campshere in New Hampshire. The two camps

(06:04):
that we have programs with the summerthat are hosting us our Barbara CA Harris
Camp in Greenfield, New Hampshire andCamp mirvistaen Tuftinborough, New Hampshire, and
so we partner with those camps andsometimes another organization that works with populations of

(06:24):
individuals that have particular chronic health conditionsand we hold camp. And so this
season we'll be having our first campin April on the twentieth and twenty first
Camp Blue Sky, which is acamp for kiddos with Down syndrome and their
families. And this particular camp willthe age range is going to be a

(06:47):
bit broader than what we usually do, So we're going to do a six
to twenty five and we'll have separateprogramming for those transitioned age youth that are
more like that eighteen to twenty fiverange, and then more traditional you know
kind of camp programming for the forthe other kiddos, And we go to

(07:09):
the camp and we do all ofthe things that you do at regular summer
camp, right, So we gohiking, and we do archery, and
we play on the climbing wall,and we play silly games, and we
go to the waterfront and do boatingactivities and swimming and just the full range
of everything, and the whole familycomes. And the beautiful part about the

(07:33):
whole family being there is that notonly do the kids get to connect with
one another and to not feel differentin that environment because everybody is sharing a
chronic medical condition, but the parentsget to connect and they get to have
time together and maybe learn from eachother, and they build a community with

(07:55):
one another. And those are relationshipsboth for the kids and the parents that
carry on long long after the campsession is over. And so that's the
general gist of all of the camps. But as I said, we have
that one camp for the down syndromefamilies. Then we have a really rare

(08:16):
disease clothes syndrome that we work withthe close syndrome community, and they'll be
holding a camp June fourteenth through theseventeenth with us, and we'll be going
out to Greenfield for that. Wehave Camp Spinnaker, which is a camp
for kiddos with asthma, so amuch broader population, not that same rare

(08:39):
disease as with clothes, and thatcamp is going to be in August from
the fifteenth through the eighteenth. Andthen we have a partnership program with It's
My Heart New England and we'll behaving camp for kids with congenital heart defects
and that camp is going to bein November eighth through the tenth. So

(09:01):
the little different programs for everybody,and we're always looking to expand we're always
looking for partnerships. So we encourageany programs that are, you know,
similar to the Clothes Syndrome Community orIt's My Heart New England to get in
touch with us and talk about buildinga camp program for their group. And

(09:22):
then we are also looking into otherprograms where we hold that aren't with a
particular partner as well. I thinkthat there's a great family story from last
Summer's or last spring Rather's Camp BlueSky that kind of highlights what this means
to the parents and the families.So we had one mom at camp that

(09:46):
was there with her two daughters withDown syndrome that she adopted and adopted as
you know, young children, knowingthat they had Down syndrome. Both of
the girl have pretty significant needs.They came to camp and their mom,

(10:07):
in reflecting after camp, said whatothers would consider fun weekends are so hard
for my kids. They can't participatewith their typical peers, and this weekend
gave us amazing activities with an instantsupportive community that really gets it. I'm
a single mom, so traveling aloneis not feasible, but this weekend I

(10:28):
felt like I was with family.It's all about normalcy, introducing normalcy and
just one to these families who havebeen struggling. I really appreciated what you
said a couple seconds ago about parentsgetting to network as well, because being
a parent of a chronic a childwith a chronic illness, that's a lot
on your shoulders. I'm sure.I mean, I'm not personally one,

(10:48):
but I know a lot of kidswho have chronic illnesses. That's a lot
to carry. So you're really doingboth the parents and the kids such a
big favor by letting them feel justlike human beings. Takes away the isolation.
Yeah, and one thing that Devand I were talking about earlier was
that even even if you have areally supportive extended family, they still might

(11:11):
not get it in the same waythat another family that has a rare disease
gets it, in the sense ofwhat sort of activities would work, not
from lack of compassion, or trying, but just from lived experience of course.
Of course. Yeah, my momlikes to say she has a chronic

(11:31):
illness, and she likes to say, you don't get it unless you got
it all the intricacies and the careand the time, and the pain and
the frustration and the desire just tofeel normal. You're never going to get
that unless you are a part ofthat circle, that world, right right,
Yeah, what do you want thekids to learn while they're with you
at camp? Like, what doyou want them to walk away with after

(11:52):
they're done? So, I thinkwe have a few goals. Increased self
confidence and self efficacy, the knowledgethat they are capable of learning and achieving
their goals, making connections with otherpeople in the community and other friendships.

(12:16):
So I think the growth, theintroduction to new activities, and the creation
of a shared sense of community.You hit it absolutely on the head,
Emily, and we're just hoping thatas they learn and discover new things about
themselves that they'll really be able toapply that in their everyday world and their

(12:37):
everyday lives. And so they comeand they feel like they're part of this
community, but hopefully those skills andthings that they've experienced allow them to be
more a part of the community thatthey live in every day once they go
home. Yeah, so let's talkabout money, because obviously these camps are

(12:58):
probably not easy to put together puton. Anything good requires money to get
it done. I see, you'vegot a really good partnership with Partners in
Health, So deb if you wantto talk about that, expand on that
a little bit. How they've beenhelping you out, Partners in Health and
many many other groups. Right,So we are partnering also with programs in
the state of New Hampshire and anumber of other groups that provide us with

(13:22):
funding and connections. They help Youwouldn't think this would be a problem,
but they help families find us,and I think that that is a really
important thing. Right If you don'thave a need for us, then you
don't know about us. And evenwhen you do have a need, we're
a really tiny little group, andso having other people and other groups out

(13:46):
there knowing about our programming really helpsfamilies find us. And then, of
course the funding is so so important, and receiving grants from a number many,
many different source sources, it's areal patchwork of effort from from the
community at large in providing monies tous, both in addition to grants,

(14:11):
the you know, different moneies fromfundraising events and gifts and sponsorships, all
of those types of things. Soand we do work very very hard to
keep the cost of camp low andwe actually our charges are about half of

(14:33):
what the actual direct expense of thecamp is, never mind any overhead involved
with our organization, because we reallyand truly want this to be accessible and
oftentimes families with kiddos with chronic healthconditions have a lot of additional financial challenges
that revolve around that, and sowe recognize that to be able to participate,

(14:58):
it needs to be reasonable and aforeaardable. And in addition to that,
we make sure that scholarships are alwaysavailable, so all anybody has to
do is ask and we'll be ableto make a scholarship available for that family
to join us at a camp program. Wonderful, and the regular day programs

(15:18):
are all free. Yeah, andagain due to a very generous grant.
Accessibility is so important, especially forfamilies, and inflation is so high.
Grocery bills are ridiculous. You know, the last thing anybody needs right now
is to struggle about trying to socializeand get their kid out there to meet
other kids. So thank you forall the work you're doing with that.
Let's talk about how people can findyou, Emily, if people want to

(15:41):
volunteer, if they want to donate, if they want to get their family
involved. Because we've been talking abouthow you want to get your word out
there that you offer all these greatprograms, how can people find you?
Absolutely so they can go to ourwebsite, and our website is Zebra hyphen
Crossings dot org and they can emailus directly info at Zebra Hyphens Crossing dot

(16:07):
org. They can visit our Facebookpage, and we also try to connect
various community organizations so they can passalonger information and pediatrician's offices. But I
would say the main way was wouldbe the website, or shoot us an
email or send us a message onFacebook. Okay, great and deb If

(16:30):
somebody wants to donate, should theydo so through the website? Should they
call you? How can they helpyou out that way? Certainly, anybody
is more than welcome to give usa call, send us an email,
and we'll help them right along withthat. But there is a way right
on the website for people to donate, so it should be pretty easy to
find our little donate button and bringsup a nice form that they can just

(16:55):
complete and use a credit card ofwhatever type they have and make that donation
beautiful. Emily and deb thank youso much for your time, Thank you
for what you're doing for these kids, and all the best to you is
we move our way into the spring. Thank you. I really appreciate the
opportunity. Thank you so much.Have a safe and healthy weekend. Please
join me again next week for anotheredition of the show. I'm Nicole Davis

(17:18):
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