In this episode, we speak with Alicia Mathieu, president and founder of Down to Defend. Alicia is the mother of three children, one of those children is living with Down syndrome.
When Alicia received her son Levi’s diagnosis, she said she was empowered to change the gut-wrenching statistics that she unveiled during her research. We spoke with her about her journey to this role as president and founder of Down To Defend.The mission of Down to Defend is to educate and equip those living with intellectual and developmental disabilities by providing safety classes and resources to lead a more fulfilling life.
Online: Down To Defend
When Alicia received her son Levi’s diagnosis, she said she was empowered to change the gut-wrenching statistics that she unveiled during her research. We spoke with her about her journey to this role as president and founder of Down To Defend.The mission of Down to Defend is to educate and equip those living with intellectual and developmental disabilities by providing safety classes and resources to lead a more fulfilling life.
Online: Down To Defend
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:02):
This is iHeartRadio's West Michigan Weekend. West Michigan Weekend is
a weekly program designed to inform and enlighten on a
wide range of public policy issues, as well as news
and current events. Now here's your host, Phil Tower.
Speaker 2 (00:16):
In this segment, I'm really pleased to welcome first time
guest to the program. She is Alicia Matthew. She is
the president and founder of Down to Defend, and advocacy
and support organization for family members with Down syndrome and
people just who really are passionate about supporting those who
have Down kids or Down family members. Founded right here
(00:38):
in Grand Rapids and already making a positive impact nationwide,
and you can learn more at Down Todefend dot org. So, Alicia,
we are just really happy to welcome to you the program.
I know a lot of people, including myself, you know,
our radio audience does know the whole story of Down
to Defend. Neither do I. So we're all going to
(00:59):
learn to together today. First of all, thank you so
much for taking the time to be with us.
Speaker 3 (01:03):
Yeah, thank you so much for having me. This is
a true honor.
Speaker 2 (01:06):
How many kids in your family?
Speaker 3 (01:08):
Yeah, so we have three kids and one of them
has Down syndromes, and that is my middle child. His
name is of Levi and he is six years old.
Speaker 2 (01:18):
Talk about your experience having Levi with Down syndrome. You
have other kids, so kind of walk us through this
experience of first of all, just being a mom. That
that's challenging enough. But what compelled you after Levi was
born to start down to defend. Let's walk through that backstory.
Speaker 3 (01:38):
Okay, So yeah, I have three children. So my oldest
just turned twelve. His name is McKennon. We call him Mac.
And then I have Levi who's six, and my youngest
is Reese who is two, and she is a little fitfire.
After having Lee, well after finding out about Levi's diagnosis,
(02:00):
I was prenatally diagnosed at about fourteen weeks and there
was a nine out of ten chance that he was
going to have Down syndrome. I was offered the amnios
and tisis, and before that, I was offered, you know,
to terminate the pregnancy, and of course I did not
go through with that. I did, however, go through with
(02:22):
the amnios and tisis. I was told that if I
were to do the amnios and pieces that it would
just give me a better opportunity while I was pregnant
to have more ultrasounds, and just to keep a closer
eye on him, because people who are pregnant with children
who have Down syndrome are they usually will have a
(02:44):
stillborn if they go beyond thirty seven weeks, and I
feel not a lot of parents know that. So yes,
I did go through with the amnio and it was confirmed.
So I did know I was going to have Levi
and he was going to have Down syndrome. From there,
I started researching. I didn't quite know what downsing rome was.
I knew one person growing up who had it, and
(03:06):
he was nonverbal, and you know, I didn't know him
very well, but he was who I pictured when I
thought of having Levi, And so I researched and came
across just awful statistics, one being an article from NPR
and it explained that those living with intellectual and developmental
(03:31):
disabilities are sexually assaulted at a rate seven times higher than
those without disabilities.
Speaker 2 (03:37):
That was a shocking statistic when I saw that on
your website.
Speaker 3 (03:41):
Yeah, that statistic is what fueled Down to defense.
Speaker 2 (03:46):
Really wow. Yeah, just to unpack all the other things
which are very normal. Whether you're giving virtual a child
who is going to live with Down syndrome or a
child with some other type of intellectual disability or a
physical disability, you have all kinds of questions, anxiety, just
(04:06):
uncertainty about the future, which is very very normal. But
you research this and that is a pretty striking, a
pretty compelling statistic that caused you to act, to create
down to defend. So Levi is born. He's now six
years old and living an active, full life. Winded down
(04:29):
to defend start.
Speaker 3 (04:31):
Down to the fense started almost instantly. So after I
had read that statistic, I started looking into different programming
to see what was out there for children like him,
and I couldn't find anything. And after I had given birth,
we hosted our first jiu jitsu class and there was
(04:51):
maybe like five or six people that came, but I
just saw, you know, how they interacted and how they
took in, you know, the training for self defense, and
I realized that it's more about confidence and skill building
than you know, than taking them to fight off a
(05:11):
bad guy, you know. So there was so much more
to it that I had learned. So then we started
offering self defense karate and it kind of stemmed from
there because I realized it's not just about self defense,
It's about so much more. It's about education and what
they're not being taught. And so there's so many different
safety aspects of life that they're not they're not being
(05:34):
educated on. So again, we we created a CPR program,
which is also being revamped, so we are doing it
more hands on. I've realized that sitting in front of
a TV trying to learn, you know, how to do
compressions for three hours is not the way to learn.
(05:55):
So we have different stations now where we can go
around and they can actually see what a stretcher looks like.
They can make a nine to one one call to
a real life operator and experience the questions being asked
and just prepare in that way, because why, I mean,
if you're choking, why would you not want them to
help you? You know, you would just hope that anybody
(06:19):
around is going to help. And then and yet, and
so then I realized as LEVI was growing, he you know,
needed he was attracted to water. Well, then I realized, okay,
leading causing death and children in general six and under
is drowning, and children with down syndrome, children with autism,
(06:41):
they all are attracted to water. He started an infant
swim resource program where they learned to float and self
rescue themselves if they were to ever fall into a
body of water. And yeah, the list goes on and on.
But one thing I am extremely proud of is the
celebration combaskets that we offer to our local hospitals here
(07:03):
and Grin Rapids, and we provide they're diaper bags and
they're filled with just fun safety items, clothes, blankets, but
we also add educational tags item. So, for instance, like
a pacifier, there's a tag on there and it says
this will help with hypotonia, which is weak muffle tones,
(07:23):
and it will help strengthen oral motor skills. So most
children with Down syndrome have weak muffle tone and so
it's educating, but it's also gifting and there's local resources
in there as well and a medical organizer and yeah,
so it's just different from what I experienced after I
had had leave. I didn't want anyone to feel the
(07:48):
negative that team with a diagnosis, because I don't think
that it is a negative thing.
Speaker 2 (07:54):
Absolutely. We're speaking with Alicia Matthews. She's president and founder
of Down to defin and in advocacy and support organizations
for families living with kids with Down syndrome, and they
exist to educate and equip those who have intellectual and
developmental disabilities by providing safety resources, eventually leading to a
(08:17):
very fulfilling life. There are so many statistics out there.
We do know there are around six thousand babies in
the country who in the United States are born with
Down syndrome. But you mentioned something that really struck me.
You felt very alone, and that really compelled you to
(08:37):
start down to defend. There is that importance of feeling
camaraderie with other mothers and families with kids living with
Down syndrome.
Speaker 3 (08:46):
Right, Yeah, with the celebration bags, I make sure that
I can deliver them to these new parents. I try
to bring a self advocate with me that can to
show them that life with Down syndrome is is beautiful
and it's not a scary thing, and that you know,
they are just as successful as anybody else. Creating that community.
(09:08):
Which we have other classes like Down to Groove, which
is a music parent led class, but it's more of
the camaraderie, Like you're saying, so parents can come and
you know, communicate with other parents who are going through
the same thing, and their kids can enjoy the music
and dancing, and you don't have to be scared. You know,
(09:29):
you can just let them be who they are and
you can be who you are, and it's a beautiful community.
I always welcome the parents to a family they didn't
know that they had Licia.
Speaker 2 (09:39):
We've got a couple of minutes left and I want
to use this time wisely. So those listening to us
here on the program on iHeartRadio have a chance to
connect with you, offer to volunteer if they feel compelled
to do that, or if they have a child living
with Down syndrome and their family and they'd like to
get involved. Down to Defend dot org work down to
(10:00):
defend dot o RG. You have an organization that has
a gala once a year. You just finished a very
successful gala. But in our last couple of moments, how
can people get involved? How can they help make down
to defend a great and impactful organization for years to come.
Speaker 3 (10:19):
So there's yeah, there's plenty of place to get involved.
Like like you said, there's a gala. So we do
have a Gala committee that we that we ask for
each year. We have parent led music groups that we
would love people to come and be involved in. Honestly,
any any class. We need more instructors and we need
(10:40):
more space facilities to you know, have these posts these
classes at so anything like that. And of course financial
is always a big thing with a nonprofit, so we
don't charge for any of our classes. We support that all.
And I did want to mention that this is not
only for people with Down syndrome. This is for any
(11:04):
person living with an intellectual or a developmental disability. So
thank you, We welcome all. Yeah, even simbling, you know, anybody,
that's probably the biggest thing to just come to our classes,
get involved, learn alongside us. We just started a program
to the state of Michigan where we teach sexuality education
(11:26):
and I am looking for a team to help me
with that, where you go around and you just teach
people pretty much who a safe person is, what a
safe place is, and and those types of things. And yeah,
just volunteering for all sources of events. But you can
find us on social media. We're on Facebook, LinkedIn Instagram,
(11:51):
and then of course there's our website.
Speaker 2 (11:53):
Down to Defend dot Org Down to Defend Dot orgy,
and it goes without saying this is twenty twenty five.
Five years from now, there will be advancements things to
improve the quality of life for children and kids living
with Down syndrome and other intellectual and developmental disabilities. There
is I would just say, overall for anyone living with
(12:17):
a disability, physical, intellectual, or otherwise, far less stigma than
existed twenty five years ago. And that is a huge blessing,
as it should be. And I just want to celebrate
you here on West Michigan Weekend on iHeartRadio, and thank
you for your adavist advocacy, thank you for your willingness
(12:39):
to step forward and do something that would have scared
a lot of people. And I want to wish you
continued success with Down to Defend.
Speaker 3 (12:46):
Thank you so much.
Speaker 2 (12:47):
Alicia Matthew with us on this segment of West Michigan Weekend,
and again the organization is Down to Defend right here
in West Michigan. You can learn more at down to
Defend dot org. She is the president and founder of
Down to Defend And as you heard her say, not
just families with kids living with Down syndrome, but any
(13:08):
type of intellectual and developmental disability. You're welcome to join in.
That's our program for this week on West Michigan Weekend
from iHeartRadio. Thank you so much for tuning in.
Speaker 1 (13:19):
You've been listening to iHeartRadio's West Michigan Weekend. West Michigan
Weekend is a production of Wood Radio and iHeartRadio.
This is iHeartRadio's West Michigan Weekend. West Michigan Weekend is
a weekly program designed to inform and enlighten on a
wide range of public policy issues, as well as news
and current events. Now here's your host, Phil Tower.
Speaker 2 (00:16):
In this segment, I'm really pleased to welcome first time
guest to the program. She is Alicia Matthew. She is
the president and founder of Down to Defend, and advocacy
and support organization for family members with Down syndrome and
people just who really are passionate about supporting those who
have Down kids or Down family members. Founded right here
(00:38):
in Grand Rapids and already making a positive impact nationwide,
and you can learn more at Down Todefend dot org. So, Alicia,
we are just really happy to welcome to you the program.
I know a lot of people, including myself, you know,
our radio audience does know the whole story of Down
to Defend. Neither do I. So we're all going to
(00:59):
learn to together today. First of all, thank you so
much for taking the time to be with us.
Speaker 3 (01:03):
Yeah, thank you so much for having me. This is
a true honor.
Speaker 2 (01:06):
How many kids in your family?
Speaker 3 (01:08):
Yeah, so we have three kids and one of them
has Down syndromes, and that is my middle child. His
name is of Levi and he is six years old.
Speaker 2 (01:18):
Talk about your experience having Levi with Down syndrome. You
have other kids, so kind of walk us through this
experience of first of all, just being a mom. That
that's challenging enough. But what compelled you after Levi was
born to start down to defend. Let's walk through that backstory.
Speaker 3 (01:38):
Okay, So yeah, I have three children. So my oldest
just turned twelve. His name is McKennon. We call him Mac.
And then I have Levi who's six, and my youngest
is Reese who is two, and she is a little fitfire.
After having Lee, well after finding out about Levi's diagnosis,
(02:00):
I was prenatally diagnosed at about fourteen weeks and there
was a nine out of ten chance that he was
going to have Down syndrome. I was offered the amnios
and tisis, and before that, I was offered, you know,
to terminate the pregnancy, and of course I did not
go through with that. I did, however, go through with
(02:22):
the amnios and tisis. I was told that if I
were to do the amnios and pieces that it would
just give me a better opportunity while I was pregnant
to have more ultrasounds, and just to keep a closer
eye on him, because people who are pregnant with children
who have Down syndrome are they usually will have a
(02:44):
stillborn if they go beyond thirty seven weeks, and I
feel not a lot of parents know that. So yes,
I did go through with the amnio and it was confirmed.
So I did know I was going to have Levi
and he was going to have Down syndrome. From there,
I started researching. I didn't quite know what downsing rome was.
I knew one person growing up who had it, and
(03:06):
he was nonverbal, and you know, I didn't know him
very well, but he was who I pictured when I
thought of having Levi, And so I researched and came
across just awful statistics, one being an article from NPR
and it explained that those living with intellectual and developmental
(03:31):
disabilities are sexually assaulted at a rate seven times higher than
those without disabilities.
Speaker 2 (03:37):
That was a shocking statistic when I saw that on
your website.
Speaker 3 (03:41):
Yeah, that statistic is what fueled Down to defense.
Speaker 2 (03:46):
Really wow. Yeah, just to unpack all the other things
which are very normal. Whether you're giving virtual a child
who is going to live with Down syndrome or a
child with some other type of intellectual disability or a
physical disability, you have all kinds of questions, anxiety, just
(04:06):
uncertainty about the future, which is very very normal. But
you research this and that is a pretty striking, a
pretty compelling statistic that caused you to act, to create
down to defend. So Levi is born. He's now six
years old and living an active, full life. Winded down
(04:29):
to defend start.
Speaker 3 (04:31):
Down to the fense started almost instantly. So after I
had read that statistic, I started looking into different programming
to see what was out there for children like him,
and I couldn't find anything. And after I had given birth,
we hosted our first jiu jitsu class and there was
(04:51):
maybe like five or six people that came, but I
just saw, you know, how they interacted and how they
took in, you know, the training for self defense, and
I realized that it's more about confidence and skill building
than you know, than taking them to fight off a
(05:11):
bad guy, you know. So there was so much more
to it that I had learned. So then we started
offering self defense karate and it kind of stemmed from
there because I realized it's not just about self defense,
It's about so much more. It's about education and what
they're not being taught. And so there's so many different
safety aspects of life that they're not they're not being
(05:34):
educated on. So again, we we created a CPR program,
which is also being revamped, so we are doing it
more hands on. I've realized that sitting in front of
a TV trying to learn, you know, how to do
compressions for three hours is not the way to learn.
(05:55):
So we have different stations now where we can go
around and they can actually see what a stretcher looks like.
They can make a nine to one one call to
a real life operator and experience the questions being asked
and just prepare in that way, because why, I mean,
if you're choking, why would you not want them to
help you? You know, you would just hope that anybody
(06:19):
around is going to help. And then and yet, and
so then I realized as LEVI was growing, he you know,
needed he was attracted to water. Well, then I realized, okay,
leading causing death and children in general six and under
is drowning, and children with down syndrome, children with autism,
(06:41):
they all are attracted to water. He started an infant
swim resource program where they learned to float and self
rescue themselves if they were to ever fall into a
body of water. And yeah, the list goes on and on.
But one thing I am extremely proud of is the
celebration combaskets that we offer to our local hospitals here
(07:03):
and Grin Rapids, and we provide they're diaper bags and
they're filled with just fun safety items, clothes, blankets, but
we also add educational tags item. So, for instance, like
a pacifier, there's a tag on there and it says
this will help with hypotonia, which is weak muffle tones,
(07:23):
and it will help strengthen oral motor skills. So most
children with Down syndrome have weak muffle tone and so
it's educating, but it's also gifting and there's local resources
in there as well and a medical organizer and yeah,
so it's just different from what I experienced after I
had had leave. I didn't want anyone to feel the
(07:48):
negative that team with a diagnosis, because I don't think
that it is a negative thing.
Speaker 2 (07:54):
Absolutely. We're speaking with Alicia Matthews. She's president and founder
of Down to defin and in advocacy and support organizations
for families living with kids with Down syndrome, and they
exist to educate and equip those who have intellectual and
developmental disabilities by providing safety resources, eventually leading to a
(08:17):
very fulfilling life. There are so many statistics out there.
We do know there are around six thousand babies in
the country who in the United States are born with
Down syndrome. But you mentioned something that really struck me.
You felt very alone, and that really compelled you to
(08:37):
start down to defend. There is that importance of feeling
camaraderie with other mothers and families with kids living with
Down syndrome.
Speaker 3 (08:46):
Right, Yeah, with the celebration bags, I make sure that
I can deliver them to these new parents. I try
to bring a self advocate with me that can to
show them that life with Down syndrome is is beautiful
and it's not a scary thing, and that you know,
they are just as successful as anybody else. Creating that community.
(09:08):
Which we have other classes like Down to Groove, which
is a music parent led class, but it's more of
the camaraderie, Like you're saying, so parents can come and
you know, communicate with other parents who are going through
the same thing, and their kids can enjoy the music
and dancing, and you don't have to be scared. You know,
(09:29):
you can just let them be who they are and
you can be who you are, and it's a beautiful community.
I always welcome the parents to a family they didn't
know that they had Licia.
Speaker 2 (09:39):
We've got a couple of minutes left and I want
to use this time wisely. So those listening to us
here on the program on iHeartRadio have a chance to
connect with you, offer to volunteer if they feel compelled
to do that, or if they have a child living
with Down syndrome and their family and they'd like to
get involved. Down to Defend dot org work down to
(10:00):
defend dot o RG. You have an organization that has
a gala once a year. You just finished a very
successful gala. But in our last couple of moments, how
can people get involved? How can they help make down
to defend a great and impactful organization for years to come.
Speaker 3 (10:19):
So there's yeah, there's plenty of place to get involved.
Like like you said, there's a gala. So we do
have a Gala committee that we that we ask for
each year. We have parent led music groups that we
would love people to come and be involved in. Honestly,
any any class. We need more instructors and we need
(10:40):
more space facilities to you know, have these posts these
classes at so anything like that. And of course financial
is always a big thing with a nonprofit, so we
don't charge for any of our classes. We support that all.
And I did want to mention that this is not
only for people with Down syndrome. This is for any
(11:04):
person living with an intellectual or a developmental disability. So
thank you, We welcome all. Yeah, even simbling, you know, anybody,
that's probably the biggest thing to just come to our classes,
get involved, learn alongside us. We just started a program
to the state of Michigan where we teach sexuality education
(11:26):
and I am looking for a team to help me
with that, where you go around and you just teach
people pretty much who a safe person is, what a
safe place is, and and those types of things. And yeah,
just volunteering for all sources of events. But you can
find us on social media. We're on Facebook, LinkedIn Instagram,
(11:51):
and then of course there's our website.
Speaker 2 (11:53):
Down to Defend dot Org Down to Defend Dot orgy,
and it goes without saying this is twenty twenty five.
Five years from now, there will be advancements things to
improve the quality of life for children and kids living
with Down syndrome and other intellectual and developmental disabilities. There
is I would just say, overall for anyone living with
(12:17):
a disability, physical, intellectual, or otherwise, far less stigma than
existed twenty five years ago. And that is a huge blessing,
as it should be. And I just want to celebrate
you here on West Michigan Weekend on iHeartRadio, and thank
you for your adavist advocacy, thank you for your willingness
(12:39):
to step forward and do something that would have scared
a lot of people. And I want to wish you
continued success with Down to Defend.
Speaker 3 (12:46):
Thank you so much.
Speaker 2 (12:47):
Alicia Matthew with us on this segment of West Michigan Weekend,
and again the organization is Down to Defend right here
in West Michigan. You can learn more at down to
Defend dot org. She is the president and founder of
Down to Defend And as you heard her say, not
just families with kids living with Down syndrome, but any
(13:08):
type of intellectual and developmental disability. You're welcome to join in.
That's our program for this week on West Michigan Weekend
from iHeartRadio. Thank you so much for tuning in.
Speaker 1 (13:19):
You've been listening to iHeartRadio's West Michigan Weekend. West Michigan
Weekend is a production of Wood Radio and iHeartRadio.
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