July 1, 2025 ⢠37 mins
đď¸ Finding Strength, Community, and Purpose in Disability Parenting
When Alma Schneider moved from a bustling apartment in New York City to suburban New Jersey, she didnât expect to feel adrift. But after her son was diagnosed with disabilities, the shift in identity was both profound and isolating. In this heartfelt and powerful episode of Lost in Jersey, Alma shares how one conversationâa friend encouraging her to reconnect with her creativityâsparked a movement that has transformed lives.
That first spark led to the creation of 1 in 6 Support, a growing organization that offers connection, advocacy, and practical resources for families raising children with disabilities. What began as a casual coffee group is now a vital network helping parents navigate challenges that are too often faced in silenceâfrom mental health crises to behavioral struggles.
Alma speaks candidly about the realities of parenting a child with disabilities and how community support can be a lifeline. Through events like Motherâs Day pampering day, Disability Pride Parade, and advocacy for inclusive hiring, 1 in 6 Support is reshaping how we talk aboutâand show up forâfamilies with special needs.
Whether youâre a parent, an ally, or someone looking to better understand this experience, Almaâs story offers insight, hope, and a reminder that no one should have to do this alone.
đ Learn more at 1in6support.org
đŹ âOne in six children. One in three families. Together, we can do more.â
More Links:
#DisabilityParenting #CommunitySupport #InclusionMatters #MentalHealth #ParentingJourney #Podcast
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hi Rachel, hey Jeanette, so we just got off an
interview with Alma Schneider.
We have run in the similarcircles and we have always known
of all the good things that sheis connected to.
So Alma tells us an incrediblestory about her past growing up
in New York City, which you haveto hear if you're going to
really enjoy.
You may think you know Alma,but we learned something about
(00:21):
her and her growing up.
She is one of seven siblingsand I'll leave it there.
Speaker 2 (00:26):
You'll hear the rest of it.
Don't tell them.
Speaker 1 (00:28):
I won't tell them.
And then also, she has done tworeally big things.
One is she does Parents whoRock, which is she gets parents
together who are musicians, andshe does fundraising and she'll
talk a little bit more aboutthat.
It's incredibly inspiring thatstory.
So stick around for that.
And also mostly she is nowworking at oneinsixsupportorg
(00:52):
and it is to help parents whohave children with a disability.
Speaker 2 (00:57):
Listen to this interview.
You're going to want to helpand you're going to want to
donate to one in six supportorgto help them realize their dream
of letting everyone feel lessalone in that journey as a
parent and finding the rightresources not just for you and
your family, but also yourchildren.
It's pretty phenomenal, sowe're grateful to have had her
(01:18):
on.
Enjoy this interview with AlmaSnyder.
Speaker 1 (01:24):
Thank you so much, alma Snyder, for joining us on
lost in jersey.
It's nice to have you.
Speaker 3 (01:29):
Thank you, I've been enjoying your episodes, so I'm
very honored to be one of yourguests.
Thank you so much you're also apodcaster.
Speaker 1 (01:36):
What is your podcast?
Called?
Two moms, no fluff.
So how's that podcast goinggoing?
Speaker 3 (01:42):
great.
We've been running it for aboutfour years now, I think, and we
cover all sorts of interestingtopics that most people who have
children with disabilitiesdon't talk about, and we feel
like it's really important toget all discussions out there
for everyone.
Speaker 2 (01:57):
Yeah, I've listened to a few of them and I really
love how you talk about howhaving a child with disabilities
, how it affects the wholefamily, affects marriage, and
you just allow it all to hangout so people feel not alone and
they feel like, okay, I'm notthe only one going through this.
It's a really nice podcast.
Yeah, it's an important podcast.
(02:18):
Yeah, thank you.
Speaker 1 (02:20):
Well, before we get into you being an advocate for
this program, many programs ofhelping the community and also
the program that you have one insix support, we'd like to know
a little bit about yourbackground, how you grew up and
how you got to New Jersey.
I know a little bit.
I think you grew up in New YorkCity.
Speaker 3 (03:06):
Yes, I grew up in New York City in an unusual
neighborhood called Tudor City,that's way on the east side, by
the East River.
So I grew up in this great andEgyptian and from Barbados and
Africa and India.
So this is what I thought wasnormal and typical.
But as I got older I realized,oh wow, this was really special.
Speaker 1 (03:18):
Well, why did you live in that neighborhood?
Were your parents working inthat industry as well?
Speaker 3 (03:24):
No, my father had a studio there are a lot of studio
apartments there and he wasliving in a studio apartment in
Tudor City.
And when he married my motherand they had their first seven
children, they moved to apalatial two bedroom apartment
across the street and so,because it was rent, stabilized
(03:46):
and very safe and a realcommunal environment, they
stayed.
Yeah, for better or for worse.
We grew up with nine people ina two-bedroom apartment and a
dog.
Speaker 2 (03:58):
Oh, my gosh and a dog .
That is ambitious.
Speaker 1 (04:02):
How did that work out ?
How did you split up the living, the sleeping?
Speaker 3 (04:07):
It was living in one and my parents in the other.
Wow, very, very atypical NewYork story.
So I have five sisters and onebrother and we all slept in one
room and we thought that thiswas how it was for people, until
we got a little older and werealized, wow, imagine the
memories and the photos and thelife of that seven in one
(04:30):
bedroom in a New York Citybedroom.
Speaker 1 (04:33):
Yes, that's not like a big room.
Speaker 3 (04:36):
It was not big and in the evenings there was no floor
to walk on that every bed wasopened, and we had.
Because I know your nextquestion is going to be how did
everybody sleep in one bedroom.
So I'll just preempt that andtell you we had two bunk beds.
We had and might I add thatthere are only nine years
(04:57):
between the youngest and theoldest twins thrown in there we
had two bunk beds, so that'sfour beds.
And then there was a trundlebed under one of the bunk beds
where my two younger sistersslept together, and then there
was a Castro convertible, thislittle square that opened up
into a bed and that's where mybrother slept.
So, once again, once eveninghad started and it was time for
(05:21):
bed, you couldn't walk on thefloor.
You have to walk on the beds toget out of that room.
Speaker 1 (05:27):
I'm just so curious about this part of your life
right now.
I'm just like how do you keepunder control seven people in
one room?
I mean I would imagine there'sso much giggling or mischief or
fighting, or just so muchconstantly going, fighting,
fighting.
Speaker 3 (05:46):
There was a lot of chaos, there was a lot of
screaming and yelling, but wedid it.
You know, that was our life andwe just did it.
The main things that I rememberfrom the chaos?
Well, a few things.
One was that one of my sistersalways slept really, really late
and then another sister wasvery studious and would get very
(06:06):
, very upset when we were makingnoise and she had to get to bed
.
Another issue I remember was wehad no air conditioning and it
was so hot in there and we hadfans, but we I can't believe we
did this but we would throwwater onto the mattresses.
Can you imagine In the summer?
I think about that now and ifmy kids did that, I would go
(06:27):
zerk, but that's what we did tostay cool.
I mean, those are the mainthings I remember.
And we had a tiny black andwhite TV in there, very tiny,
with obviously no cable.
So once MTV came to town and Iwas hanging out at my friend's
house with their color TV withcable, it was like whoa, this is
the life, wow.
Speaker 2 (06:47):
Curious.
Does that make you grow upwanting to live in a house, or
with way more space?
Or does it make you comfortablein that area and that you want
to stay like that when you growup?
I?
Speaker 3 (06:59):
really tend to like small spaces.
I happen to live in a very bigVictorian now with very small
rooms.
As much as I love having thespace, especially having a large
kitchen, which we did not havegrowing up.
We had a long galley kitchen,very narrow.
I love having a big kitchen,but I like being in a small
(07:19):
enclosed space.
When all my siblings gettogether, we don't even realize
that we do this, but we pile upon a couch, like basically on
top of each other, even if thereare other chairs.
We just gravitate toward thesmall and the close together.
That being said, I doappreciate privacy very much and
I do appreciate phone time, butI think that the positives that
(07:43):
have come out of that situationare that I really have a much,
much higher tolerance.
It's not that I thrive or enjoychaos, but I think I have a
much higher tolerance for chaos.
Speaker 1 (07:55):
Well, as you transitioned out, you went to
college.
Speaker 3 (07:59):
So I went to the University of Wisconsin for
college.
Sight unseen, might I add.
Yes, I was one of these peoplethat just showed up.
We had seven kids and we didnot have money.
Speaker 1 (08:10):
Yeah, you're not going to be touring.
Speaker 3 (08:12):
I read the Barron's book.
Speaker 2 (08:15):
The Barron's.
I know exactly what you'retalking about.
Speaker 3 (08:17):
That's all we had back then, and we read all about
it and it had five stars foreverything and I knew that it
was a revolutionary school inthe 60s and I was like, ah, this
is the place for me and showedup there.
I love telling these newcollege students that I showed
up there with like mismatchedsheets that came out of my
(08:37):
closet Not today, not today,baby, not today.
And I just showed up.
Another friend of mine fromhigh school also went there, so
we went on the.
My dad drove us to the airport,the two of us got on a plane,
showed up in Wisconsin and umand went to the dorm that was
not in some hippie co-op that Iwas hoping for and it was right
(08:59):
on fraternity and sorority row.
I was very unhappy.
I had older siblings who hadall gone to small colleges and I
had visited them.
I don't know what I wasthinking.
To be honest, it wasn't liketoday.
I was just like all right, Ijust thought all colleges were
going to be like theirs, eventhough I knew it was going to be
(09:20):
really big there, and I reallystruggled there for a long time.
I did not find my people for acouple of years until I went to
Spain for my junior year abroadand that's kind of where I found
like-minded people.
I had good moments but I wasnot happy and I do share that
story because I think a lot ofpeople are embarrassed to say
that and they won't transfer orthey feel lesser than because
(09:44):
they didn't enjoy where theywere.
It's important to let peopleknow that it's not always
perfect when you go to college,absolutely.
What did you study?
I studied psychology.
I always wanted to be atherapist.
I went for my master's degree acouple of years later in social
work.
Speaker 1 (10:02):
Well, how did you end ?
Speaker 3 (10:04):
up in New Jersey.
My goodness, when one is fromNew York City, one feels that
they have a God-given right tolive in New York City forever
because you were born there andit's in your DNA.
And once my husband and I hadour first kid, my husband said
you know, we can't stay here,right?
And I was like what are youtalking about?
We can't stay here.
Of course we can stay hereCause I, you know.
(10:25):
He said it's just crazyexpensive.
We were not going to be able tostay here.
We were renting.
And then my husband read NewYork magazine.
This was in like 2001, Ibelieve.
He read New York magazine andthere was an article about
Bloomfield, new Jersey, and theysaid Bloomfield, new Jersey, is
the next up and coming suburbfor New Yorkers to move to.
(10:46):
You know, native New Yorkersare people who live in New York
City.
We didn't even have a car and Ididn't even know how to drive,
by the way, and we borrowed acar from a friend of ours and he
made an appointment with arealtor and I felt like I had
complete imposter syndrome, likeI was acting like a grown up.
And we met we imposter syndrome.
(11:08):
I was acting like a grownup.
We drove into New Jersey, intoMontclair, and met with a
realtor.
She showed us houses in Cliftonand Bloomfield and these huge
houses that weren't that muchmoney.
I was like, wow, look at allthis space.
I can't even imagine.
We're driving around.
And she says why aren't youlooking in Montclair, the
realtor.
And we said what's Montclair?
(11:28):
We never heard of Montclair.
And she says, oh, you're muchmore Montclair people.
So she starts driving us aroundMontclair and she takes us to a
house that had the family wasthere and they weren't supposed
to be there, or we weren'tsupposed to be there, or we
weren't supposed to be therebecause they were home.
And they said, you know, at thelast second we could come in.
(11:51):
So I saw the mom in this kitchen.
That and it's not in the houseI live in now but there was a
mom in the kitchen with thislittle kitchen island and she
had a few kids there eatingmacaroni and cheese on the
island.
And we went into the basementthat was a finished basement
with all these toys in it and Isaid I can see myself in this
(12:14):
house.
I could see myself with thatfinished basement, a separate
area of toys, and I could seemyself in that kitchen, you know
, feeding the kids, and with akitchen island.
And I had a one and a half yearold at the time and the mom
gave us a diaper for her becausewe needed a diaper.
We went home and the agent waslike you got to put your best
(12:35):
foot forward, you got to step upto the plate and put as much
money down as you can and we wonthe bet.
I burst into tears and I said Ican't move to New Jersey.
I changed my mind.
I changed my mind how do we getout of this?
And I freaked out, and that'svery typical of me.
Speaker 1 (12:53):
I also know you from Parents who Rock, so I've always
been interested in how thatcame about.
So you've always been active inthings that you do.
Speaker 3 (13:04):
So tell us how you've become not only a
representative of New Jersey,you definitely are a kind of a
local celebrity, of one wouldsay, well, I do have four kids,
and when you have four kids andyou participate in different
things, that just naturallyyou're going to know a lot of
people from different, you know,age groups.
(13:26):
But, yes, I, you know, I thinkthat community has always been
very important to me.
I'm a connector by nature andthat's why I became a social
worker, because I believe that,you know, people need to be
together and they need to worktogether and I have, you know,
since I got here.
You know the music, the parentswho rock.
As soon as I got here, I reallystruggled with the lack of live
(13:48):
music.
I didn't realize that there wasmusic going on.
But you know, that was a bigpart of my life in New York City
, going to shows, and it knew somany people in high school who
performed, you know, who were inbands my whole life.
So I really missed that when Igot to Montclair, yeah, so I did
(14:12):
start, I started Parents whoRock, but that started after I
had my son with a disability.
My friend, I was, you know,really struggling, you know,
right after he was born.
It was very tough for me and myfriend said you really need to
get in touch with your creativeside, you know to get through
this.
So I immediately you know Ilistened, I always take people's
(14:35):
advice and I immediately wentlooking for an open mic.
And somebody told me that thisplace on Valley Road had an open
mic it was called Valley CoffeeHouse or something like that
back then and she said she nolonger did open mics.
And I said why not?
And she said they're just.
You know, people are not good.
And I said, oh well, I know somany musicians in town who are
(14:59):
good.
I was lying and she goes.
Well, if you can put together anight of a bunch of musicians,
you can do it on this day.
And I hit a pavement and Ireached out to everybody I knew
and I ended up putting togethera show.
I found eight performers and weput together a show where
everybody got 15 minutes andperformed three songs each, and
(15:23):
not only were the performersreally good, but we had standing
room only.
It was a really magical momentfor me because I was pretty.
I was really having a hard timewith the situation at home and
I'm going to get a littlegraphic here, but my son had a
feeding tube and I had to.
I pumped breast milk for over ayear to feed him through the
(15:46):
tube because I was at this show.
I didn't, I couldn't pump for anumber of hours.
We immediately came home afterthe show and I remember, sitting
on my bed, I was was pumpingbreast milk with my pump and I
caught my face in the mirror andI had this huge grin on my face
and I'm going to start cryingtalking about this now.
(16:06):
But it was the first time whereI felt outside of my situation
and then I went back to beingwho I was.
He was only nine months at thetime when I started Parents who
Rock and I was like this was mysalvation this night sparked.
It was like this.
Like this was my salvation,like this night, like sparked,
(16:27):
it was like this.
This is who I'm.
I am not going to be thatperson.
I'm going to be this person whoI was before.
And the beautiful thing wasthat a number of people who
ended up being in Parents whoRock were people that I met at
the DLC, the DevelopmentalLearning Center, where my son
was eventually, you know, wentto school as a preschooler.
So as time went on, all thesepeople who had kids with
(16:48):
disabilities, this was kind ofan outlet for them.
And also, you know, there areso many people in Montclair who
were musicians and came from NewYork, who were in bands, so we
had this great funnel from NewYork to Montclair with all these
awesome musicians.
Speaker 1 (17:01):
What also it also gave you I mean, all the wins.
I just love that story you toldabout seeing yourself in the
mirror smiling because for youwere recollecting the show.
You know you had something elsein your life and it's such a,
such a reminder to people whoare going through things in life
(17:21):
where you think like I can't dothat because I need to focus on
this thing, a hundred percent,but it's actually going to help
everything if you do take amoment to do something else.
That is such a powerfulstatement powerful story, alma.
Speaker 2 (17:40):
That's a really good reminder to all of us who are
going through stuff to not putaside the things that do give us
joy.
Speaker 3 (17:47):
Yes, Self-care is so important and that has been a
theme throughout my entire adultlife.
That this is.
You know, I grew up in a veryableist society, like we all did
, where I didn't even know theywere kids with disabilities.
In my junior high school, youknow cause, they were in the
basement and I only saw themonce on the playground, you know
, and I had no idea this is youknow.
(18:08):
So there was so much shame andso much stigma around having a
child with a disability and I,you know, and I fully disclosed
to everyone that I had thatmyself.
I had internalized all of thatand I, you know, I'm a very
proud person.
I do not want people pitying meand I thought my life was over.
I mean, I thought it was overand that's really where my pain
(18:31):
came from that I destroyed ourfamily with this, that I was
just going to have no friends,that our family was going to be
so ostracized and isolated.
So that's what I was reallydealing with, and this reminded
me that I do not have to have mylife be just this and I could
have other things going on thatbring me joy.
Speaker 2 (18:51):
Well, I think that comes through clearer in your
podcast that you both reallyspeak about taking care of each
other, but taking care ofyourselves and not to feel
guilty that you need to andreally I think that's always a
guilty that you need to.
Really, I think that's always acommon thread in your episodes.
Speaker 3 (19:08):
Yes, absolutely Absolutely, you can do it.
Speaker 1 (19:11):
When I saw you recently at an event, we talked
a little bit about the one insix support organization.
Can you talk a little bit aboutthat?
Can you tell us how it gotstarted?
Speaker 3 (19:23):
Yeah, so once my son Lincoln was finished with the
Developmental Learning Center,which is the pre-K for kids with
disabilities and special needsin Montclair, I got very nervous
because I found community withthe parents from that program
and because we have a magnetsystem in Montclair, I knew that
people were going to getdispersed and I know that
(19:46):
proximity is so important forfriendships and relationships
and especially if you have somechallenges, you know, with a
child with a disability.
I said, you know, to one of myfriends, let's meet for coffee
every Friday, let's have astanding date for coffee every
Friday.
Long story short, you know, Iinvited the other moms from the
DLC to come and one thing led toanother Two people from that
(20:08):
little group at my house turnedinto.
We now have well over 600families in Montclair.
It is a weekly in-person groupand it's also a 24-7 chat group
under a platform.
It's not Yahoo but it's calledgroupsio and it's called the
Friday group and it's now theFriday group under one in six
(20:31):
support.
So that support group has beengoing on and it's been free.
I've hosted it.
I served breakfast and coffeefor 17 years now.
What came out of that group wasa podcast with my current
partner for One in Six Supportnamed Iris Miller.
She actually now lives inMichigan, but she used to live
(20:53):
in Bloomfield.
I started the Disability PrideParade in Montclair that just
had its fifth anniversary in May.
I started the Mother's Day,this big Mother's Day event for
the moms of kids withdisabilities, where we have this
big event where vendorsvolunteer their time and talents
for all the moms.
We have Jones Road alwaysdonates makeup artists.
(21:16):
We have professionalphotographers who come in and
take beautiful headshots of themoms.
We have Reiki therapists, othermassage therapists, tarot card
readers, people who makebracelets, personal bracelets
for people, and it's a day ofjust pampering the moms of kids
who might not get therecognition from their own
(21:37):
children for Mother's Day.
So all of these things happen.
We now have a dad's group fordads of children with
disabilities.
So many events, social eventsin the evenings.
My partner, who moved toMichigan she did not have any
community there.
She has a daughter who hasquadriplegic cerebral palsy, who
is non-speaking, and they movedto Michigan during the pandemic
(21:58):
and found, wow, this is muchbetter for them.
They just meant to go for amonth and they ended up never
coming back during COVID becausetheir life was so much improved
with the care she gets now 24hour care that she didn't get in
New Jersey.
So I said you got to startcommunity building.
You know you got to start asupport group.
She's like I can't start asupport group, that's too hard.
(22:20):
So I held her hand and taughther everything that goes into
starting a support group and shestarted a support group and it
took off like wildfire.
She called it the same thing,she did it on the same day, she
did it exactly as I had done itand then she got emboldened and
(23:03):
replicated the Disability PrideParade replicated the.
You know, once you have acommunity, you're empowered to
make change in your communityand you know, at a state and a
national level.
So we started the nonprofit Onein Six Support last year.
We have all of these programsunder it and we are currently
really trying to fortify andexpand our local programs in
(23:27):
both New Jersey and Michigan,but eventually we want to bring
this to the rest of the country.
We also do presentations forcompanies talking about how they
can be more supportive andinclusive to their employees who
are parents of children withdisabilities, and that's a way
for us to raise money for thenonprofit.
(23:47):
But we're also getting grantsfrom foundations, but also from
individuals.
We have a fundraising campaigngoing on right now.
So that's one in six supportwe're doing the small thing of
changing the world.
One in six support we're doingthe small thing of changing the
world.
It's tiny.
Speaker 2 (24:03):
Easy, very simple.
You got this Very simple.
You know what?
If anyone could do it, it's you, alma.
I really fully believe that youcreated a wonderful blueprint
by your own lived experiencehere in Montclair and then just
all that you've learned and allthe knowledge you have.
People know in our town forsure, like if you have a
question about all thesemultiple things in schooling or
(24:26):
out of school, they should reachout to you or do the Fridays
group and just FYI, the Fridaygroup is not only in person,
it's also.
Speaker 3 (24:36):
we made it hybrid.
Right now we have 600.
It grows every day.
I just added two people today.
We're constantly getting newmembers.
Once you have all those parents, they share their information
and resources.
So it's really incredible whatyou can gain from the experience
of other people who have beenthere done that.
And we have incredible speakersthat we will try to record the
(24:59):
speakers that we have on avariety of topics.
We're experts in the fields foranywhere from the self-care
with meditation to.
We have therapists come to talkabout how to deal with ADHD.
We have people who come to talkabout special needs, trusts for
your child when they get older,how to do the guardianship
process, how to do Qigong withyour kid for stress.
(25:20):
I mean, we cover everything inour group.
So it's really you know it'snot me, it's providing a safe
space for all these people tocome together to share resources
.
Speaker 1 (25:32):
I wanted to ask you about the name of the
organization.
One in Six.
Speaker 3 (25:36):
Well, one in Six Kids has a disability in the United
States according to the CDC.
One in six kids has adisability in the United States
according to the CDC.
And that means not one in sixfamilies, that means one in
three families, because mostfamilies have one point, dot,
dot, dot kids.
So that's one in three familiesand we cover every single
disability in our group, frommild, you know.
(25:56):
Some people feel like, oh, Ican't be in the group because my
situation isn't severe enough,and that's absolutely not the
case.
We have people who havechildren with mild dyslexia, all
the way to people who havechildren who are visually
impaired, deaf, cannot walk, usea feeding tube.
We have something in commonthat we feel othered, or our
(26:20):
children feel othered, and wehave struggles that are similar.
There's a common theme here andthere are subgroups that we
create for families who havechildren who have suicidal
ideation, who are in residentialcare, who are violent or all of
the things that are real, evenwithin the disability community,
(26:40):
can be stigmatizing or peopleare afraid to talk about it,
even online, because they feelthat other families, they will
not be able to have play datesfor their kids if somebody finds
out that their kids can have aviolent outburst.
So we really try to accommodateeveryone and all of their needs
by, you know, quietly, puttingthem in touch with other people.
(27:02):
And something that I've noticedover the last few years which is
, you know, a positive and anegative in our culture is that
people are way more open totalking about their kids' mental
health issues on our listservand in our group that their
children are.
You know, they have borderlinepersonality disorder and they
are extremely challenging andwe're talking at very young ages
(27:25):
.
I just had someone who joinedthe group, who was an
eight-year-old with significantmental health challenges.
Kids who were running into thestreet to try to, you know, hurt
themselves.
We didn't have that as much inthe last few years and since,
you know, the last up until thelast few years, and now we have
so many parents talking aboutthis and not feeling like they
have to keep it quiet, and it'sobviously going to help people
(27:48):
if they're sharing about it,because then other people jump
in and they feel safe bringingthis up themselves.
You know, this is my life'swork.
I've done a lot of things in mylife, but this is something
that I'm so happy about and soproud of, because it's truly the
gift that keeps on giving.
I mean, what better, better wayto have people feel less alone
(28:08):
and better equipped to deal withtheir children than if they
themselves feel nurtured andtaken care of and heard?
Speaker 1 (28:14):
Reminds me a lot of 12 Step Growth.
The program, in which youreally needed somebody that was
experiencing what you wereexperiencing to get the help
that you needed.
It wasn't just communicating,and that was the first stepping
stone, is like you can'tnecessarily talk to the doctors
and they'll tell you someprescriptive things to do, but
(28:37):
you really need someone to knowwhen you're down and you're out,
to be able to say I understand,and I think that that's what's
so incredible about this program.
I'm surprised that it hasn't ithasn't already been here that
what you're doing, I think is,is such a needed facet of all of
our society, and I really dohope that you get the funding,
(28:57):
because I think that's probablyyour big block is the funding.
You need money, money,everything needs money to get
going Right and so people can goto your site and donate.
Speaker 2 (29:05):
Yes, yes, one in six supportorg.
Speaker 3 (29:08):
Make sure you put the word support in there, Cause
there's another organizationcalled one in six you know one
in six supportorg Um and I.
I'm glad that you brought up 12step programs because I have
been to a number of AA meetingswith friends of mine and my dad
was actually in recovery fromalcoholism and what helped him
after decades of alcoholism wasAA and I have always run my
(29:32):
group like AA because I know howimportant it is for people to
know that it's always on.
This is why I really make aneffort to have it every Friday,
unless the Montclair schools areclosed.
I just want people to know thatit's there if you need it.
You know you can always be onthe listserv, but the group
itself is always on.
I always have food and coffeeand it's really like a social
(29:54):
outing for parents as well as asafe place to talk about their
stuff, and sometimes we don'teven talk about disability,
we'll just talk about what'sgoing on on.
You know TV Winning AmericanIdol, who do you?
You know which shows are youinto now?
What you know?
These are all things that.
(30:14):
It's just a place where we canexhale and know that people get
it you know because you're withparents that are struggling.
Speaker 1 (30:20):
You're not alone On the website.
Do you list all the differenttype of?
You know one and sixes that aresomeone might identify or think
that they this isn't for them,but then they look at it and
they're like, like you hadmentioned, you know suicidal
ideation, like things like that.
Is there a list of all thedifferent?
Speaker 3 (30:38):
Yeah, I'm glad you're asking that because we are
currently moving toward a forumon our website.
We have an amazing web designer.
I'm going to give a littleshout out to her name Delaina
Tapper.
Nason House is her company.
She's fantastic and she iscurrently moving all of our
information onto a forum.
(30:58):
Everything that we do is goingto be on this forum on the
website.
That's great, and one of thethings that we're doing there is
we are listing and people willbe able to go on the forum and
put their child's disability.
So right now we have, you know,what my son has is Prader-Willi
syndrome.
We have a lot of autism.
You know a lot of parents havekids with autism in the
community.
We have Down syndrome, we havea cerebral palsy, but there are
(31:22):
so many because of these geneticyou know all the technology
with genetics there are so manypeople who have rare, their kids
have rare syndromes.
We are.
People are going to be able tolist their child's rare syndrome
and you can put up.
People are going to have theability to just write out what
their kid's disability is.
Or fetal alcohol syndrome,which people don't talk about as
(31:44):
much as it's out there.
It's a very common disability,but they're going to be able to
post all of the disabilities andthen we're going to have forums
for those specific disabilities.
So give me a place that won'tfreak out when I bring my child
to cut their hair.
We're going to have all thesegreat resources, you know, all
in one place.
So we really want people to bea part of the forum and allies
(32:07):
is.
You know we have an alliesgroup as well.
A lot of vendors want to be inone and six support but I don't
let them in.
It's because it's just forparents and we have an allies
group where people can talkabout.
You know, because a lot ofpeople our population is very
vulnerable and we don't wantpeople coming in and hawking
their wares for the parent, butsome of those wares might be
(32:31):
really useful to the parent.
Yeah, one in six support alliescurrently on Facebook.
It's a Facebook group andpeople can post about their
therapeutic businesses, theirgyms that accommodate people
with disabilities.
So all the vendors out therecan be on the 106 Support Allies
group as well.
We love sharing informationabout people in town and
(32:53):
businesses in town that willhire people with disabilities,
and the Montclair Diner has beengreat about that.
There's the CornerstoneMontclair Art Museum Cafe that
you may know about.
That hires people withdisabilities.
Cornerstone also hires peoplewith disabilities.
It's an inclusive setting and alot of other places in town and
we're trying to.
Also one of the many, manythings we're doing is we're
(33:14):
trying to get more businesses tohire people who have
disabilities, because peoplewith disabilities have job
coaches and they can be therewith them and we want to explain
to them.
I'm also on the People withDisabilities Advisory Committee
to the town of Montclair, so wework with housing, you know, for
people with disabilities.
You know streets that aremessed up and wheelchairs cannot
(33:34):
go down the streets.
Have the town fix those.
So we also want businesses toknow that there are a lot of
really great people out therewho could be working in your.
Not only is it the right thingto do, but it's doable and you
could have a great candidateworking in your store.
Speaker 2 (33:51):
Well, we'll be putting a link to it in our show
notes and also on the site.
We'll spread the word wheneverwe can, so we'll try to do our
part in it.
Speaker 1 (33:59):
Alma, I'm so glad that you came on and shared this
information.
We end each podcast with aquestion of what do you love
about New Jersey?
What has got you finally, afterall of these years of kicking
and screaming here?
Speaker 3 (34:14):
I do like that.
It forced me to learn how todrive at the age of 34, which I
do consider one of my greatestaccomplishments in life that
with pumping breast milk for ayear.
Those two are very high ranking.
I have not been around the restof New Jersey as much as I
should, but I can speak toloving Montclair and what I love
about Montclair, which are thepeople.
(34:37):
They call it the friend tax.
The taxes are high here, butit's the friend tax.
We have such an interestingcommunity of people who do such
interesting things.
So many people invested incommunity service and music, and
now we have amazing restaurants, which I love.
You know people make fun of mebecause I'm always talking about
Le Souk, which is on WatongPlaza.
(34:59):
I love the vibe in there.
It's like being in anothercountry and the food is awesome.
There are a lot of great placeson the South End that I really
enjoy.
I love the new Sankofa Cafe,which is a great place to get
coffee on the South End onOrange Road.
I love the new restaurant DomSal.
Have you been there?
That's amazing.
Speaker 2 (35:17):
I haven't been there yet, but it's on my list.
It's on South End, it's onwhere is that?
Speaker 3 (35:21):
It's Indian like fusion food.
It is so phenomenal.
Speaker 1 (35:26):
Well, yo, I have been there.
I have been there.
I couldn't remember the name ofit.
Yeah, I've been there, it'scool Paneer type dish.
Speaker 3 (35:32):
It's incredible, but I have to say I really my
favorite, favorite, favoritething is is yard sales and
estate sales.
I am because I got not to soundlike Abraham Lincoln, but
because I grew up really withnothing and I go to these yard
sales and estate sales and I amin.
Can I curse here?
I'm like a pig in shit.
(35:53):
It is my happy place.
I just love.
I love Tony's Community Closetthrift shop.
I go to all the thrift shopshere.
I love the culture of it.
I love talking to the peoplewho are selling their stuff.
I love that.
Really, my house is almostcompletely furnished with yard
sales, estate sales and curbalert.
Speaker 1 (36:12):
I like the large item pickup.
If I could pick up some of thisstuff and just put it away to
deal with it later, to refurbishit or something it would be
great You're like the kid thatwas denied candy.
That is like obsessively eatingcandy now, and instead it's
something a little more than adrawer for you, that's true,
(36:33):
also, that's great.
Well, it's been a pleasure I'mso glad that we had you on to
tell us all these wonderfulstories and also to share what
you are doing.
Speaker 3 (36:45):
Thank you, I hope so, I really hope so, and I really
appreciate what you're doing andtalking to all the interesting
people in town, and I'm extraexcited that I saw that you
interviewed Governor Phil Murphy, that I'm going to be on the
same podcast that GovernorMurphy is on, so that's right, I
have to tell you Thank you somuch for joining us.
Speaker 2 (37:06):
This podcast was produced by Rachel Martens and
Jeanette Afsharian.
You can find us on Spotify,iTunes and Buzzsprout.
Thanks for listening.
See you next week.
Hi Rachel, hey Jeanette, so we just got off an
interview with Alma Schneider.
We have run in the similarcircles and we have always known
of all the good things that sheis connected to.
So Alma tells us an incrediblestory about her past growing up
in New York City, which you haveto hear if you're going to
really enjoy.
You may think you know Alma,but we learned something about
(00:21):
her and her growing up.
She is one of seven siblingsand I'll leave it there.
Speaker 2 (00:26):
You'll hear the rest of it.
Don't tell them.
Speaker 1 (00:28):
I won't tell them.
And then also, she has done tworeally big things.
One is she does Parents whoRock, which is she gets parents
together who are musicians, andshe does fundraising and she'll
talk a little bit more aboutthat.
It's incredibly inspiring thatstory.
So stick around for that.
And also mostly she is nowworking at oneinsixsupportorg
(00:52):
and it is to help parents whohave children with a disability.
Speaker 2 (00:57):
Listen to this interview.
You're going to want to helpand you're going to want to
donate to one in six supportorgto help them realize their dream
of letting everyone feel lessalone in that journey as a
parent and finding the rightresources not just for you and
your family, but also yourchildren.
It's pretty phenomenal, sowe're grateful to have had her
(01:18):
on.
Enjoy this interview with AlmaSnyder.
Speaker 1 (01:24):
Thank you so much, alma Snyder, for joining us on
lost in jersey.
It's nice to have you.
Speaker 3 (01:29):
Thank you, I've been enjoying your episodes, so I'm
very honored to be one of yourguests.
Thank you so much you're also apodcaster.
Speaker 1 (01:36):
What is your podcast?
Called?
Two moms, no fluff.
So how's that podcast goinggoing?
Speaker 3 (01:42):
great.
We've been running it for aboutfour years now, I think, and we
cover all sorts of interestingtopics that most people who have
children with disabilitiesdon't talk about, and we feel
like it's really important toget all discussions out there
for everyone.
Speaker 2 (01:57):
Yeah, I've listened to a few of them and I really
love how you talk about howhaving a child with disabilities
, how it affects the wholefamily, affects marriage, and
you just allow it all to hangout so people feel not alone and
they feel like, okay, I'm notthe only one going through this.
It's a really nice podcast.
Yeah, it's an important podcast.
(02:18):
Yeah, thank you.
Speaker 1 (02:20):
Well, before we get into you being an advocate for
this program, many programs ofhelping the community and also
the program that you have one insix support, we'd like to know
a little bit about yourbackground, how you grew up and
how you got to New Jersey.
I know a little bit.
I think you grew up in New YorkCity.
Speaker 3 (03:06):
Yes, I grew up in New York City in an unusual
neighborhood called Tudor City,that's way on the east side, by
the East River.
So I grew up in this great andEgyptian and from Barbados and
Africa and India.
So this is what I thought wasnormal and typical.
But as I got older I realized,oh wow, this was really special.
Speaker 1 (03:18):
Well, why did you live in that neighborhood?
Were your parents working inthat industry as well?
Speaker 3 (03:24):
No, my father had a studio there are a lot of studio
apartments there and he wasliving in a studio apartment in
Tudor City.
And when he married my motherand they had their first seven
children, they moved to apalatial two bedroom apartment
across the street and so,because it was rent, stabilized
(03:46):
and very safe and a realcommunal environment, they
stayed.
Yeah, for better or for worse.
We grew up with nine people ina two-bedroom apartment and a
dog.
Speaker 2 (03:58):
Oh, my gosh and a dog .
That is ambitious.
Speaker 1 (04:02):
How did that work out ?
How did you split up the living, the sleeping?
Speaker 3 (04:07):
It was living in one and my parents in the other.
Wow, very, very atypical NewYork story.
So I have five sisters and onebrother and we all slept in one
room and we thought that thiswas how it was for people, until
we got a little older and werealized, wow, imagine the
memories and the photos and thelife of that seven in one
(04:30):
bedroom in a New York Citybedroom.
Speaker 1 (04:33):
Yes, that's not like a big room.
Speaker 3 (04:36):
It was not big and in the evenings there was no floor
to walk on that every bed wasopened, and we had.
Because I know your nextquestion is going to be how did
everybody sleep in one bedroom.
So I'll just preempt that andtell you we had two bunk beds.
We had and might I add thatthere are only nine years
(04:57):
between the youngest and theoldest twins thrown in there we
had two bunk beds, so that'sfour beds.
And then there was a trundlebed under one of the bunk beds
where my two younger sistersslept together, and then there
was a Castro convertible, thislittle square that opened up
into a bed and that's where mybrother slept.
So, once again, once eveninghad started and it was time for
(05:21):
bed, you couldn't walk on thefloor.
You have to walk on the beds toget out of that room.
Speaker 1 (05:27):
I'm just so curious about this part of your life
right now.
I'm just like how do you keepunder control seven people in
one room?
I mean I would imagine there'sso much giggling or mischief or
fighting, or just so muchconstantly going, fighting,
fighting.
Speaker 3 (05:46):
There was a lot of chaos, there was a lot of
screaming and yelling, but wedid it.
You know, that was our life andwe just did it.
The main things that I rememberfrom the chaos?
Well, a few things.
One was that one of my sistersalways slept really, really late
and then another sister wasvery studious and would get very
(06:06):
, very upset when we were makingnoise and she had to get to bed
.
Another issue I remember was wehad no air conditioning and it
was so hot in there and we hadfans, but we I can't believe we
did this but we would throwwater onto the mattresses.
Can you imagine In the summer?
I think about that now and ifmy kids did that, I would go
(06:27):
zerk, but that's what we did tostay cool.
I mean, those are the mainthings I remember.
And we had a tiny black andwhite TV in there, very tiny,
with obviously no cable.
So once MTV came to town and Iwas hanging out at my friend's
house with their color TV withcable, it was like whoa, this is
the life, wow.
Speaker 2 (06:47):
Curious.
Does that make you grow upwanting to live in a house, or
with way more space?
Or does it make you comfortablein that area and that you want
to stay like that when you growup?
I?
Speaker 3 (06:59):
really tend to like small spaces.
I happen to live in a very bigVictorian now with very small
rooms.
As much as I love having thespace, especially having a large
kitchen, which we did not havegrowing up.
We had a long galley kitchen,very narrow.
I love having a big kitchen,but I like being in a small
(07:19):
enclosed space.
When all my siblings gettogether, we don't even realize
that we do this, but we pile upon a couch, like basically on
top of each other, even if thereare other chairs.
We just gravitate toward thesmall and the close together.
That being said, I doappreciate privacy very much and
I do appreciate phone time, butI think that the positives that
(07:43):
have come out of that situationare that I really have a much,
much higher tolerance.
It's not that I thrive or enjoychaos, but I think I have a
much higher tolerance for chaos.
Speaker 1 (07:55):
Well, as you transitioned out, you went to
college.
Speaker 3 (07:59):
So I went to the University of Wisconsin for
college.
Sight unseen, might I add.
Yes, I was one of these peoplethat just showed up.
We had seven kids and we didnot have money.
Speaker 1 (08:10):
Yeah, you're not going to be touring.
Speaker 3 (08:12):
I read the Barron's book.
Speaker 2 (08:15):
The Barron's.
I know exactly what you'retalking about.
Speaker 3 (08:17):
That's all we had back then, and we read all about
it and it had five stars foreverything and I knew that it
was a revolutionary school inthe 60s and I was like, ah, this
is the place for me and showedup there.
I love telling these newcollege students that I showed
up there with like mismatchedsheets that came out of my
(08:37):
closet Not today, not today,baby, not today.
And I just showed up.
Another friend of mine fromhigh school also went there, so
we went on the.
My dad drove us to the airport,the two of us got on a plane,
showed up in Wisconsin and umand went to the dorm that was
not in some hippie co-op that Iwas hoping for and it was right
(08:59):
on fraternity and sorority row.
I was very unhappy.
I had older siblings who hadall gone to small colleges and I
had visited them.
I don't know what I wasthinking.
To be honest, it wasn't liketoday.
I was just like all right, Ijust thought all colleges were
going to be like theirs, eventhough I knew it was going to be
(09:20):
really big there, and I reallystruggled there for a long time.
I did not find my people for acouple of years until I went to
Spain for my junior year abroadand that's kind of where I found
like-minded people.
I had good moments but I wasnot happy and I do share that
story because I think a lot ofpeople are embarrassed to say
that and they won't transfer orthey feel lesser than because
(09:44):
they didn't enjoy where theywere.
It's important to let peopleknow that it's not always
perfect when you go to college,absolutely.
What did you study?
I studied psychology.
I always wanted to be atherapist.
I went for my master's degree acouple of years later in social
work.
Speaker 1 (10:02):
Well, how did you end ?
Speaker 3 (10:04):
up in New Jersey.
My goodness, when one is fromNew York City, one feels that
they have a God-given right tolive in New York City forever
because you were born there andit's in your DNA.
And once my husband and I hadour first kid, my husband said
you know, we can't stay here,right?
And I was like what are youtalking about?
We can't stay here.
Of course we can stay hereCause I, you know.
(10:25):
He said it's just crazyexpensive.
We were not going to be able tostay here.
We were renting.
And then my husband read NewYork magazine.
This was in like 2001, Ibelieve.
He read New York magazine andthere was an article about
Bloomfield, new Jersey, and theysaid Bloomfield, new Jersey, is
the next up and coming suburbfor New Yorkers to move to.
(10:46):
You know, native New Yorkersare people who live in New York
City.
We didn't even have a car and Ididn't even know how to drive,
by the way, and we borrowed acar from a friend of ours and he
made an appointment with arealtor and I felt like I had
complete imposter syndrome, likeI was acting like a grown up.
And we met we imposter syndrome.
(11:08):
I was acting like a grownup.
We drove into New Jersey, intoMontclair, and met with a
realtor.
She showed us houses in Cliftonand Bloomfield and these huge
houses that weren't that muchmoney.
I was like, wow, look at allthis space.
I can't even imagine.
We're driving around.
And she says why aren't youlooking in Montclair, the
realtor.
And we said what's Montclair?
(11:28):
We never heard of Montclair.
And she says, oh, you're muchmore Montclair people.
So she starts driving us aroundMontclair and she takes us to a
house that had the family wasthere and they weren't supposed
to be there, or we weren'tsupposed to be there, or we
weren't supposed to be therebecause they were home.
And they said, you know, at thelast second we could come in.
(11:51):
So I saw the mom in this kitchen.
That and it's not in the houseI live in now but there was a
mom in the kitchen with thislittle kitchen island and she
had a few kids there eatingmacaroni and cheese on the
island.
And we went into the basementthat was a finished basement
with all these toys in it and Isaid I can see myself in this
(12:14):
house.
I could see myself with thatfinished basement, a separate
area of toys, and I could seemyself in that kitchen, you know
, feeding the kids, and with akitchen island.
And I had a one and a half yearold at the time and the mom
gave us a diaper for her becausewe needed a diaper.
We went home and the agent waslike you got to put your best
(12:35):
foot forward, you got to step upto the plate and put as much
money down as you can and we wonthe bet.
I burst into tears and I said Ican't move to New Jersey.
I changed my mind.
I changed my mind how do we getout of this?
And I freaked out, and that'svery typical of me.
Speaker 1 (12:53):
I also know you from Parents who Rock, so I've always
been interested in how thatcame about.
So you've always been active inthings that you do.
Speaker 3 (13:04):
So tell us how you've become not only a
representative of New Jersey,you definitely are a kind of a
local celebrity, of one wouldsay, well, I do have four kids,
and when you have four kids andyou participate in different
things, that just naturallyyou're going to know a lot of
people from different, you know,age groups.
(13:26):
But, yes, I, you know, I thinkthat community has always been
very important to me.
I'm a connector by nature andthat's why I became a social
worker, because I believe that,you know, people need to be
together and they need to worktogether and I have, you know,
since I got here.
You know the music, the parentswho rock.
As soon as I got here, I reallystruggled with the lack of live
(13:48):
music.
I didn't realize that there wasmusic going on.
But you know, that was a bigpart of my life in New York City
, going to shows, and it knew somany people in high school who
performed, you know, who were inbands my whole life.
So I really missed that when Igot to Montclair, yeah, so I did
(14:12):
start, I started Parents whoRock, but that started after I
had my son with a disability.
My friend, I was, you know,really struggling, you know,
right after he was born.
It was very tough for me and myfriend said you really need to
get in touch with your creativeside, you know to get through
this.
So I immediately you know Ilistened, I always take people's
(14:35):
advice and I immediately wentlooking for an open mic.
And somebody told me that thisplace on Valley Road had an open
mic it was called Valley CoffeeHouse or something like that
back then and she said she nolonger did open mics.
And I said why not?
And she said they're just.
You know, people are not good.
And I said, oh well, I know somany musicians in town who are
(14:59):
good.
I was lying and she goes.
Well, if you can put together anight of a bunch of musicians,
you can do it on this day.
And I hit a pavement and Ireached out to everybody I knew
and I ended up putting togethera show.
I found eight performers and weput together a show where
everybody got 15 minutes andperformed three songs each, and
(15:23):
not only were the performersreally good, but we had standing
room only.
It was a really magical momentfor me because I was pretty.
I was really having a hard timewith the situation at home and
I'm going to get a littlegraphic here, but my son had a
feeding tube and I had to.
I pumped breast milk for over ayear to feed him through the
(15:46):
tube because I was at this show.
I didn't, I couldn't pump for anumber of hours.
We immediately came home afterthe show and I remember, sitting
on my bed, I was was pumpingbreast milk with my pump and I
caught my face in the mirror andI had this huge grin on my face
and I'm going to start cryingtalking about this now.
(16:06):
But it was the first time whereI felt outside of my situation
and then I went back to beingwho I was.
He was only nine months at thetime when I started Parents who
Rock and I was like this was mysalvation this night sparked.
It was like this.
Like this was my salvation,like this night, like sparked,
(16:27):
it was like this.
This is who I'm.
I am not going to be thatperson.
I'm going to be this person whoI was before.
And the beautiful thing wasthat a number of people who
ended up being in Parents whoRock were people that I met at
the DLC, the DevelopmentalLearning Center, where my son
was eventually, you know, wentto school as a preschooler.
So as time went on, all thesepeople who had kids with
(16:48):
disabilities, this was kind ofan outlet for them.
And also, you know, there areso many people in Montclair who
were musicians and came from NewYork, who were in bands, so we
had this great funnel from NewYork to Montclair with all these
awesome musicians.
Speaker 1 (17:01):
What also it also gave you I mean, all the wins.
I just love that story you toldabout seeing yourself in the
mirror smiling because for youwere recollecting the show.
You know you had something elsein your life and it's such a,
such a reminder to people whoare going through things in life
(17:21):
where you think like I can't dothat because I need to focus on
this thing, a hundred percent,but it's actually going to help
everything if you do take amoment to do something else.
That is such a powerfulstatement powerful story, alma.
Speaker 2 (17:40):
That's a really good reminder to all of us who are
going through stuff to not putaside the things that do give us
joy.
Speaker 3 (17:47):
Yes, Self-care is so important and that has been a
theme throughout my entire adultlife.
That this is.
You know, I grew up in a veryableist society, like we all did
, where I didn't even know theywere kids with disabilities.
In my junior high school, youknow cause, they were in the
basement and I only saw themonce on the playground, you know
, and I had no idea this is youknow.
(18:08):
So there was so much shame andso much stigma around having a
child with a disability and I,you know, and I fully disclosed
to everyone that I had thatmyself.
I had internalized all of thatand I, you know, I'm a very
proud person.
I do not want people pitying meand I thought my life was over.
I mean, I thought it was overand that's really where my pain
(18:31):
came from that I destroyed ourfamily with this, that I was
just going to have no friends,that our family was going to be
so ostracized and isolated.
So that's what I was reallydealing with, and this reminded
me that I do not have to have mylife be just this and I could
have other things going on thatbring me joy.
Speaker 2 (18:51):
Well, I think that comes through clearer in your
podcast that you both reallyspeak about taking care of each
other, but taking care ofyourselves and not to feel
guilty that you need to andreally I think that's always a
guilty that you need to.
Really, I think that's always acommon thread in your episodes.
Speaker 3 (19:08):
Yes, absolutely Absolutely, you can do it.
Speaker 1 (19:11):
When I saw you recently at an event, we talked
a little bit about the one insix support organization.
Can you talk a little bit aboutthat?
Can you tell us how it gotstarted?
Speaker 3 (19:23):
Yeah, so once my son Lincoln was finished with the
Developmental Learning Center,which is the pre-K for kids with
disabilities and special needsin Montclair, I got very nervous
because I found community withthe parents from that program
and because we have a magnetsystem in Montclair, I knew that
people were going to getdispersed and I know that
(19:46):
proximity is so important forfriendships and relationships
and especially if you have somechallenges, you know, with a
child with a disability.
I said, you know, to one of myfriends, let's meet for coffee
every Friday, let's have astanding date for coffee every
Friday.
Long story short, you know, Iinvited the other moms from the
DLC to come and one thing led toanother Two people from that
(20:08):
little group at my house turnedinto.
We now have well over 600families in Montclair.
It is a weekly in-person groupand it's also a 24-7 chat group
under a platform.
It's not Yahoo but it's calledgroupsio and it's called the
Friday group and it's now theFriday group under one in six
(20:31):
support.
So that support group has beengoing on and it's been free.
I've hosted it.
I served breakfast and coffeefor 17 years now.
What came out of that group wasa podcast with my current
partner for One in Six Supportnamed Iris Miller.
She actually now lives inMichigan, but she used to live
(20:53):
in Bloomfield.
I started the Disability PrideParade in Montclair that just
had its fifth anniversary in May.
I started the Mother's Day,this big Mother's Day event for
the moms of kids withdisabilities, where we have this
big event where vendorsvolunteer their time and talents
for all the moms.
We have Jones Road alwaysdonates makeup artists.
(21:16):
We have professionalphotographers who come in and
take beautiful headshots of themoms.
We have Reiki therapists, othermassage therapists, tarot card
readers, people who makebracelets, personal bracelets
for people, and it's a day ofjust pampering the moms of kids
who might not get therecognition from their own
(21:37):
children for Mother's Day.
So all of these things happen.
We now have a dad's group fordads of children with
disabilities.
So many events, social eventsin the evenings.
My partner, who moved toMichigan she did not have any
community there.
She has a daughter who hasquadriplegic cerebral palsy, who
is non-speaking, and they movedto Michigan during the pandemic
(21:58):
and found, wow, this is muchbetter for them.
They just meant to go for amonth and they ended up never
coming back during COVID becausetheir life was so much improved
with the care she gets now 24hour care that she didn't get in
New Jersey.
So I said you got to startcommunity building.
You know you got to start asupport group.
She's like I can't start asupport group, that's too hard.
(22:20):
So I held her hand and taughther everything that goes into
starting a support group and shestarted a support group and it
took off like wildfire.
She called it the same thing,she did it on the same day, she
did it exactly as I had done itand then she got emboldened and
(23:03):
replicated the Disability PrideParade replicated the.
You know, once you have acommunity, you're empowered to
make change in your communityand you know, at a state and a
national level.
So we started the nonprofit Onein Six Support last year.
We have all of these programsunder it and we are currently
really trying to fortify andexpand our local programs in
(23:27):
both New Jersey and Michigan,but eventually we want to bring
this to the rest of the country.
We also do presentations forcompanies talking about how they
can be more supportive andinclusive to their employees who
are parents of children withdisabilities, and that's a way
for us to raise money for thenonprofit.
(23:47):
But we're also getting grantsfrom foundations, but also from
individuals.
We have a fundraising campaigngoing on right now.
So that's one in six supportwe're doing the small thing of
changing the world.
One in six support we're doingthe small thing of changing the
world.
It's tiny.
Speaker 2 (24:03):
Easy, very simple.
You got this Very simple.
You know what?
If anyone could do it, it's you, alma.
I really fully believe that youcreated a wonderful blueprint
by your own lived experiencehere in Montclair and then just
all that you've learned and allthe knowledge you have.
People know in our town forsure, like if you have a
question about all thesemultiple things in schooling or
(24:26):
out of school, they should reachout to you or do the Fridays
group and just FYI, the Fridaygroup is not only in person,
it's also.
Speaker 3 (24:36):
we made it hybrid.
Right now we have 600.
It grows every day.
I just added two people today.
We're constantly getting newmembers.
Once you have all those parents, they share their information
and resources.
So it's really incredible whatyou can gain from the experience
of other people who have beenthere done that.
And we have incredible speakersthat we will try to record the
(24:59):
speakers that we have on avariety of topics.
We're experts in the fields foranywhere from the self-care
with meditation to.
We have therapists come to talkabout how to deal with ADHD.
We have people who come to talkabout special needs, trusts for
your child when they get older,how to do the guardianship
process, how to do Qigong withyour kid for stress.
(25:20):
I mean, we cover everything inour group.
So it's really you know it'snot me, it's providing a safe
space for all these people tocome together to share resources
.
Speaker 1 (25:32):
I wanted to ask you about the name of the
organization.
One in Six.
Speaker 3 (25:36):
Well, one in Six Kids has a disability in the United
States according to the CDC.
One in six kids has adisability in the United States
according to the CDC.
And that means not one in sixfamilies, that means one in
three families, because mostfamilies have one point, dot,
dot, dot kids.
So that's one in three familiesand we cover every single
disability in our group, frommild, you know.
(25:56):
Some people feel like, oh, Ican't be in the group because my
situation isn't severe enough,and that's absolutely not the
case.
We have people who havechildren with mild dyslexia, all
the way to people who havechildren who are visually
impaired, deaf, cannot walk, usea feeding tube.
We have something in commonthat we feel othered, or our
(26:20):
children feel othered, and wehave struggles that are similar.
There's a common theme here andthere are subgroups that we
create for families who havechildren who have suicidal
ideation, who are in residentialcare, who are violent or all of
the things that are real, evenwithin the disability community,
(26:40):
can be stigmatizing or peopleare afraid to talk about it,
even online, because they feelthat other families, they will
not be able to have play datesfor their kids if somebody finds
out that their kids can have aviolent outburst.
So we really try to accommodateeveryone and all of their needs
by, you know, quietly, puttingthem in touch with other people.
(27:02):
And something that I've noticedover the last few years which is
, you know, a positive and anegative in our culture is that
people are way more open totalking about their kids' mental
health issues on our listservand in our group that their
children are.
You know, they have borderlinepersonality disorder and they
are extremely challenging andwe're talking at very young ages
(27:25):
.
I just had someone who joinedthe group, who was an
eight-year-old with significantmental health challenges.
Kids who were running into thestreet to try to, you know, hurt
themselves.
We didn't have that as much inthe last few years and since,
you know, the last up until thelast few years, and now we have
so many parents talking aboutthis and not feeling like they
have to keep it quiet, and it'sobviously going to help people
(27:48):
if they're sharing about it,because then other people jump
in and they feel safe bringingthis up themselves.
You know, this is my life'swork.
I've done a lot of things in mylife, but this is something
that I'm so happy about and soproud of, because it's truly the
gift that keeps on giving.
I mean, what better, better wayto have people feel less alone
(28:08):
and better equipped to deal withtheir children than if they
themselves feel nurtured andtaken care of and heard?
Speaker 1 (28:14):
Reminds me a lot of 12 Step Growth.
The program, in which youreally needed somebody that was
experiencing what you wereexperiencing to get the help
that you needed.
It wasn't just communicating,and that was the first stepping
stone, is like you can'tnecessarily talk to the doctors
and they'll tell you someprescriptive things to do, but
(28:37):
you really need someone to knowwhen you're down and you're out,
to be able to say I understand,and I think that that's what's
so incredible about this program.
I'm surprised that it hasn't ithasn't already been here that
what you're doing, I think is,is such a needed facet of all of
our society, and I really dohope that you get the funding,
(28:57):
because I think that's probablyyour big block is the funding.
You need money, money,everything needs money to get
going Right and so people can goto your site and donate.
Speaker 2 (29:05):
Yes, yes, one in six supportorg.
Speaker 3 (29:08):
Make sure you put the word support in there, Cause
there's another organizationcalled one in six you know one
in six supportorg Um and I.
I'm glad that you brought up 12step programs because I have
been to a number of AA meetingswith friends of mine and my dad
was actually in recovery fromalcoholism and what helped him
after decades of alcoholism wasAA and I have always run my
(29:32):
group like AA because I know howimportant it is for people to
know that it's always on.
This is why I really make aneffort to have it every Friday,
unless the Montclair schools areclosed.
I just want people to know thatit's there if you need it.
You know you can always be onthe listserv, but the group
itself is always on.
I always have food and coffeeand it's really like a social
(29:54):
outing for parents as well as asafe place to talk about their
stuff, and sometimes we don'teven talk about disability,
we'll just talk about what'sgoing on on.
You know TV Winning AmericanIdol, who do you?
You know which shows are youinto now?
What you know?
These are all things that.
(30:14):
It's just a place where we canexhale and know that people get
it you know because you're withparents that are struggling.
Speaker 1 (30:20):
You're not alone On the website.
Do you list all the differenttype of?
You know one and sixes that aresomeone might identify or think
that they this isn't for them,but then they look at it and
they're like, like you hadmentioned, you know suicidal
ideation, like things like that.
Is there a list of all thedifferent?
Speaker 3 (30:38):
Yeah, I'm glad you're asking that because we are
currently moving toward a forumon our website.
We have an amazing web designer.
I'm going to give a littleshout out to her name Delaina
Tapper.
Nason House is her company.
She's fantastic and she iscurrently moving all of our
information onto a forum.
(30:58):
Everything that we do is goingto be on this forum on the
website.
That's great, and one of thethings that we're doing there is
we are listing and people willbe able to go on the forum and
put their child's disability.
So right now we have, you know,what my son has is Prader-Willi
syndrome.
We have a lot of autism.
You know a lot of parents havekids with autism in the
community.
We have Down syndrome, we havea cerebral palsy, but there are
(31:22):
so many because of these geneticyou know all the technology
with genetics there are so manypeople who have rare, their kids
have rare syndromes.
We are.
People are going to be able tolist their child's rare syndrome
and you can put up.
People are going to have theability to just write out what
their kid's disability is.
Or fetal alcohol syndrome,which people don't talk about as
(31:44):
much as it's out there.
It's a very common disability,but they're going to be able to
post all of the disabilities andthen we're going to have forums
for those specific disabilities.
So give me a place that won'tfreak out when I bring my child
to cut their hair.
We're going to have all thesegreat resources, you know, all
in one place.
So we really want people to bea part of the forum and allies
(32:07):
is.
You know we have an alliesgroup as well.
A lot of vendors want to be inone and six support but I don't
let them in.
It's because it's just forparents and we have an allies
group where people can talkabout.
You know, because a lot ofpeople our population is very
vulnerable and we don't wantpeople coming in and hawking
their wares for the parent, butsome of those wares might be
(32:31):
really useful to the parent.
Yeah, one in six support alliescurrently on Facebook.
It's a Facebook group andpeople can post about their
therapeutic businesses, theirgyms that accommodate people
with disabilities.
So all the vendors out therecan be on the 106 Support Allies
group as well.
We love sharing informationabout people in town and
(32:53):
businesses in town that willhire people with disabilities,
and the Montclair Diner has beengreat about that.
There's the CornerstoneMontclair Art Museum Cafe that
you may know about.
That hires people withdisabilities.
Cornerstone also hires peoplewith disabilities.
It's an inclusive setting and alot of other places in town and
we're trying to.
Also one of the many, manythings we're doing is we're
(33:14):
trying to get more businesses tohire people who have
disabilities, because peoplewith disabilities have job
coaches and they can be therewith them and we want to explain
to them.
I'm also on the People withDisabilities Advisory Committee
to the town of Montclair, so wework with housing, you know, for
people with disabilities.
You know streets that aremessed up and wheelchairs cannot
(33:34):
go down the streets.
Have the town fix those.
So we also want businesses toknow that there are a lot of
really great people out therewho could be working in your.
Not only is it the right thingto do, but it's doable and you
could have a great candidateworking in your store.
Speaker 2 (33:51):
Well, we'll be putting a link to it in our show
notes and also on the site.
We'll spread the word wheneverwe can, so we'll try to do our
part in it.
Speaker 1 (33:59):
Alma, I'm so glad that you came on and shared this
information.
We end each podcast with aquestion of what do you love
about New Jersey?
What has got you finally, afterall of these years of kicking
and screaming here?
Speaker 3 (34:14):
I do like that.
It forced me to learn how todrive at the age of 34, which I
do consider one of my greatestaccomplishments in life that
with pumping breast milk for ayear.
Those two are very high ranking.
I have not been around the restof New Jersey as much as I
should, but I can speak toloving Montclair and what I love
about Montclair, which are thepeople.
(34:37):
They call it the friend tax.
The taxes are high here, butit's the friend tax.
We have such an interestingcommunity of people who do such
interesting things.
So many people invested incommunity service and music, and
now we have amazing restaurants, which I love.
You know people make fun of mebecause I'm always talking about
Le Souk, which is on WatongPlaza.
(34:59):
I love the vibe in there.
It's like being in anothercountry and the food is awesome.
There are a lot of great placeson the South End that I really
enjoy.
I love the new Sankofa Cafe,which is a great place to get
coffee on the South End onOrange Road.
I love the new restaurant DomSal.
Have you been there?
That's amazing.
Speaker 2 (35:17):
I haven't been there yet, but it's on my list.
It's on South End, it's onwhere is that?
Speaker 3 (35:21):
It's Indian like fusion food.
It is so phenomenal.
Speaker 1 (35:26):
Well, yo, I have been there.
I have been there.
I couldn't remember the name ofit.
Yeah, I've been there, it'scool Paneer type dish.
Speaker 3 (35:32):
It's incredible, but I have to say I really my
favorite, favorite, favoritething is is yard sales and
estate sales.
I am because I got not to soundlike Abraham Lincoln, but
because I grew up really withnothing and I go to these yard
sales and estate sales and I amin.
Can I curse here?
I'm like a pig in shit.
(35:53):
It is my happy place.
I just love.
I love Tony's Community Closetthrift shop.
I go to all the thrift shopshere.
I love the culture of it.
I love talking to the peoplewho are selling their stuff.
I love that.
Really, my house is almostcompletely furnished with yard
sales, estate sales and curbalert.
Speaker 1 (36:12):
I like the large item pickup.
If I could pick up some of thisstuff and just put it away to
deal with it later, to refurbishit or something it would be
great You're like the kid thatwas denied candy.
That is like obsessively eatingcandy now, and instead it's
something a little more than adrawer for you, that's true,
(36:33):
also, that's great.
Well, it's been a pleasure I'mso glad that we had you on to
tell us all these wonderfulstories and also to share what
you are doing.
Speaker 3 (36:45):
Thank you, I hope so, I really hope so, and I really
appreciate what you're doing andtalking to all the interesting
people in town, and I'm extraexcited that I saw that you
interviewed Governor Phil Murphy, that I'm going to be on the
same podcast that GovernorMurphy is on, so that's right, I
have to tell you Thank you somuch for joining us.
Speaker 2 (37:06):
This podcast was produced by Rachel Martens and
Jeanette Afsharian.
You can find us on Spotify,iTunes and Buzzsprout.
Thanks for listening.
See you next week.
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