July 26, 2023 • 53 mins
ETB 48: Have you heard about the positive impact of creating a personal network to support you as you care for your loved one with a disability? Our guest, Jennifer Vincent, brings her experience as a parent and network facilitator to help answer this crucial question. Jennifer shares the importance of personal networks in empowering families and individuals with disabilities. She introduces us to the book, A Good Life for You and Your Relative with a Disability by Al Etmanski, a practical guide to establishing such networks that promote strategic planning, decision-making, and provide vital sustainability resources.
Navigating the journey with Jennifer, you'll learn firsthand the intricate process of inviting members, defining roles, and fostering qualities essential for a thriving network. The lively discussions are peppered with enlightening insights on the significance of guest speakers, educational components, and the creation of a care notebook. She underlines the importance of the individual's comfort and active participation as the team members work together to provide support.
We also get an intimate look into Jennifer's personal journey of crafting a support network for her daughter, Alexandra. The conversation touches on the role of a facilitator, and the importance of varying support types. Jennifer shares creative solutions to building a support network, like including family members, thinking out of the box to include other members and using Zoom for out-of-state connections. This conversation is a goldmine for anyone looking to learn more about support networks for the special needs community, so tune in and join the discussion.
Jennifer is a licensed Vocational Nurse, president of GHFEDS: Galveston-Houston Families Exploring Down Syndrome, State Medicaid Managed Care Advisory Council Member, Partner in Policy Making 2018 graduate and a Texas Networks Connection Personal Network Facilitator.
Connect with Jennifer
Email address: Jennifervincent71@com
Texas Parent 2 Parent Website:
https://www.txp2p.org/
Texas Parent 2 Parent Care Notebook:
https://www.txp2p.org/services/family-to-family-health-info/care-notebook
Texas Network Connections:
https://www.txp2p.org/services/texas-network-connections
A Good Life for You and Your Relative with a Disability:
https://www.amazon.com/Good-Life-Your-Relative-Disability/dp/B000W5TBH6
Connect with Sandy:
IG: https://www.instagram.com/sandydeppisch
Embrace the Blessing Facebook Group: http://bit.ly/ETB4ME
Website: http://www.embracetheblessing.com/
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Sandy Deppisch (00:05):
Hey there, I'm Sandy Deppish and this is the
Embrace the Blessing podcast.
Each week, I talk with a parentwho has a child with a
disability.
They share their biggestchallenge, their greatest joy
and their hopes and dreams forthe future.
You'll learn about resourcesavailable to you and discover
helpful hints and tips.
If you want to be inspired andencouraged, stick around.
(00:28):
Let's walk the road lesstraveled together.
Well, jennifer, thank you somuch for being here.
You know I was thinking aboutit as I was logging on this
morning.
You were my very first guest onthe podcast way back here half
(00:49):
ago.
You were Embrace the Blessingnumber two, so if anybody would
like to hear Jennifer's firstepisode, feel free to go back
and find that.
I'm excited to share with usthen about your amazing daughter
, alexandra and about yourincredible family, but now you
have something exciting to sharewith us that I think a lot of
people are going to want to hearabout.
Tell us a little bit about whatit is you're here to talk about
(01:12):
today.
Jennifer Vincent (01:13):
So I'm here to talk about personal networks
for your loved one with adisability, and with saying that
, I have to let you guys knowthat this format is through the
parent to parent, Texas parentto parent organization out of
Austin, that covers state ofTexas and they have a specific
(01:34):
program called Texas NetworkConnections that specialize in
personal networks and I havebeen trained and I am now a
personal network facilitator inthat program and so the program
typically is a $750 charge, flatfee, for a facilitator to
(01:55):
facilitate these meetings.
But they currently have a grant, which is wonderful.
That's going to be ending soon,but and hopefully they'll get
another grant, but just sopeople know, if they want to
take the opportunity to utilizethat grant, now would be the
time to go to Texas parent,parent to parentorg and and
check it out and under TexasNetwork Connections.
So have to give them the plug,because that's why I'm here
(02:18):
doing this.
So actually I have learnedabout personal networks several
years ago at a conference it wasactually a DB mat deafblind,
multiple disabilities conferenceand I thought you know, I need
to do this for my kid.
But just like all of us, right,we have all these goals and
(02:38):
things that we want to do andand are we're just busy, right,
and it's hard to catch up, andso I would say it's a wonderful
thing to do at any age.
But for me, when I found outthat Texas, parent to parent was
doing facilitator training, Iwas like, okay, this is my
opportunity.
So I contacted them and and gottrained to be a facilitator.
(03:00):
And then I was like, okay, well, now my facilitator.
Well, I could be a betterfacilitator if I was having one
for my, my own daughter, right,so I did one for her.
So, but let me just and I kindof talk all over the place, so I
apologize, but I'm just goingto read the definition of a
personal network real quick.
(03:20):
I have a, so I'm going to readit off my paper here the
personal network is anintentional community of friends
and family members whovoluntarily commit to support a
person or family who is at riskof being isolated and vulnerable
by reason of chronic illness ordisability.
So, even though I had saiddisability previously, you know
(03:44):
there's individuals that aremedically complex or, you know,
have a chronic illness and theystill need support because
they're at risk for beingisolated as well.
So it's not necessarilysomebody with a physical
disability or an intellectualdisability.
It covers all spans of life.
Personal networks promoteplanning and opportunities for
(04:04):
support.
They assist with decisionmaking and goal setting and work
with the person at center andthe family to be a sustainable
resource.
Sandy Deppisch (04:15):
Amazing.
You know what I hear when youread that, like I just feel this
huge sense of relief, like youcan take a deep breath.
I mean, josiah is 21 andhearing about this now is is a
perfect time, but I can imagineif we had heard about this 10
years ago, like what adifference that would have made,
because you I mean you're thequeen of this, of researching
(04:37):
and constantly being the oneperson who is always trying to
figure everything out for yourchild.
What's the next step?
What do we do about this?
How do we fix this?
And it's all consuming.
And what I'm hearing you say isthat doesn't have to be the
case.
Now we can have a team, like wecan be a team and they can go.
I got this, I got this.
Oh my gosh, so amazing.
Jennifer Vincent (04:58):
Love it it is.
And the concept, and I will saythis, this was actually
developed out of Vancouver.
Okay, because there was a group, and you know, over there and
can they have incredibleresources right in that country
where we we don't, especially inTexas, right, we don't have the
best disability resources, sowe're already at risk there.
(05:19):
And even with all thoseresources, there was a group of
parents that got together andsaid you know what?
We still need help and supportand a system for our children.
And so they're the ones whodeveloped it and it's the.
There's a book called Plan andyou can buy it off, even off
(05:40):
Amazon, and it talks about agood life.
So that's the whole purpose ofa personal network is to develop
a good life for our childrenbecause they deserve it right,
and we're not going to liveforever and it's a big burden on
us as parents or caregivers tobe solely responsible for
another human beings life.
(06:01):
If you think about it, you knowon top of our own and you know
work, all of that, and to have asupport system is it, is, it is
a huge relief.
So I thought I'd talk a bit, alittle bit about who network
members are.
So you know, network networkmembers are a group of people of
all ages with a variety ofinterests, abilities, areas of
(06:23):
expertise, talents andconnections.
Each person who participates isvalued for his or her unique
contribution.
And again, I'm kind of readingoff a paper because I just
wanted to be very clear.
I'm very passionate about itand I could talk all day, but I
wanted to give clear information.
So, I don't talk in circles somuch, but some of the ways
(06:46):
network members contribute are,you know, the number one way is
to care about the person at thecenter, and when I say person at
the center I mean, like yourson Josiah, my daughter
Alexandra, they are.
When I use person at the center, they are the person that we're
talking about and the family.
So you know, and one of thethings that network members
(07:06):
would do in a personal network,they'll build relationships with
each other.
So you know.
So you have a support system,like we all.
We develop support systemsnaturally in our lives.
As an individual that's able toget out and drive and socialize
and work, and and our lovedones with a disability, they
really depend on us to help them, you know, access the world and
(07:28):
they don't have thatopportunity to develop those
relationships as naturally as wedo.
Sandy Deppisch (07:35):
So and then the communication barrier.
You know you have an ability tospeak or to communicate clearly
.
That's a huge barrier tocreating social relationships.
Jennifer Vincent (07:46):
Exactly so.
And and you know, the thingabout a personal network is the
people that you.
The step one is to invitepeople.
You kind of you know, youinvite people to your network.
You have an invitation, meetingat your home, you have a little
bit of food or snacks, peoplesocialize, and then so this is
step one you kind of go througha list.
(08:06):
It could be your neighbor, itcould be not you know, it could
be a therapist, it could besomebody from the school, it
could be your family.
I mean, you've got to have tothink out of the box too,
because for our kids, right, butthen that network they come
together and they get to knoweach other.
Because if you think about ittoo, like if your child, they
(08:27):
know you and they know thisperson and that person
separately, but none of themknow each other.
So how do they know to reallysupport the child if they don't
know each other?
So your network needs to bondand get to know each other too.
So you invite them and then youtalk about what a personal
network is and and then you askthem to commit about two hours
(08:48):
three to four times per year,and that's really not a lot.
That's it to come to your houseand have a meeting and more
often at the need arises.
So that's what you're askingthem to commit.
And then when they serve on anetwork, there's different roles
, like I'm currently.
Like I'm a facilitator.
So when I start a network, I goin, I do a work plan with the
(09:10):
family, talk about resources,talk about goals for the child.
Some of the goals, like from mydaughter, one of the goals is
to develop a care plan and forpeople in her network to learn
how she communicates, becausewhat I say for her is she has
(09:31):
limited verbal skills but thenshe has poor articulation too.
So, but sometimes, as you know,is any behaviorist
communication and you don't knowwhat they're expressing, what
they're communicating based on abehavior.
You can't help them in that andyour network needs to know that
.
So that could be one of yournetwork goals is learning how
your child communicates, and sothere's always an educational
(09:54):
piece in the meeting.
So each meeting, after you doyour invitation meeting and
people commit to join and thenyou schedule another meeting a
month, two months out and thentheir first meeting.
One fun thing is you name yournetwork.
So that way you know, it's justfun and you, you know, and so
(10:15):
and everybody is a part of it.
So you name your network andthen people take on roles.
Like, as I said, I'mfacilitator but then I step back
.
So as a facilitator, I do helpyou with your work plan, I do
your invitation meeting and thenI attend the first two meetings
and I send out emails andreminders.
But at your first meeting youkind of talk about the different
(10:38):
roles and you really don't wantthe parent to be the
facilitator again because thesupport system needs to give the
parent a break.
Right, that's like okay, onemore thing I have to do.
So somebody in your networkcould take over as facilitator
and a facilitator their jobwould be, and, or even a
co-facilitator you could havepeople share it, alternate.
But they make sure the meetingstarts and finishes on time,
(11:02):
they make sure everybody's voiceis heard, they leave the
meeting and then you can have ascribe which is basically a note
taker and you don't have to dothat, but it's helpful to have
that information throughout whatyou discussed.
And then they help prepare anddistribute meeting reports to
network members.
You have a meeting organizerwhich they schedule the next
(11:26):
network meeting for you.
They send out the email,reminders or a text or whatever
communications tool you use.
You have a communication leaderand that person is the person
that sets up and administerscommunication tools In some ways
.
Some people have used as GoogleDocs, groupme, et cetera.
There's so many tools out therethat use as a group and then
(11:49):
the communication leader helpsnetwork members access those
communication tools, cause, youknow, some of us are a little
bit more tech savvy, especiallythe younger generation.
So I, like like Alexandra'snetwork, I had a younger person
in their 20s.
She's in charge of ourcommunication tools, you know,
and that's great, yes, and butsome of the qualities and
(12:12):
strengths needed in a networkcollectively include, of course,
compassion and commitment,because we want people to commit
to join.
So if they say, yes, I want tojoin when you have a meeting,
then you schedule the nextmeeting and, yes, things happen.
You may need to reschedule, butsomebody needs to go.
This is on my calendar and thisis important.
(12:32):
And not be.
Oh well, I'm gonna, you know Idon't have to be there, no, it
is important and they need tocommit to, to those two hours,
you know, every month.
And so, and we and it isrecommended that you really meet
every three months the firstcouple of years and then after
that you could alternate, causeit's a evolving process.
Right, cause it's a learningprocess.
(12:52):
Your great bros and then theycan, but they need to, you know,
have common interests.
Another quality for your isunderstanding and awareness of
person.
That centers, strengths,interests and abilities,
knowledge of or willingness tolearn.
Cause it's a learning part.
Right To learn aboutdisabilities, disability issues,
(13:16):
social service systems,community resources,
recreational opportunities,cause one of the things is, as
you know, as a parent I feellike I'm the keeper of all my
daughter's information.
So if something happens, what'shappening to me today, is there
anybody else, including myhusband, that knows?
(13:37):
You know I don't.
He doesn't know how to accessher, my chart for her medical
work, what doctor she goes towhen they need to be scheduled,
where you pick up medications.
If you have supplies DMEsupplies where do they come from
?
Do are you the only one thatknows about the waiver services
and how to access them.
(13:57):
If you have guardianship orsupported decision making, so
it's a lot for one person tohold on to.
So as an as your network, it'shelpful to share that
information.
And then the network members.
So it could be that you inviteanother special needs parent to
be a part of your network tooand that might, down the road,
be like, okay, I'll, I knowabout, let's say, the class
(14:20):
waiver, so they might be thespecialists on the class waiver
for your child, if that's whatyou have, you know.
So each person kind of, as timeevolves and they learn more
about your child's interests andtheir needs and their supports,
then they can take on, takesome off of us as parents too,
and I can help with that on, youknow, or they could research.
(14:43):
Let's say, if you're a younger,you have a younger kid and
you're starting a network andyou haven't decided yet whether
you wanna do supportive decisionmaking, guardianship, or, you
know, power of attorney as aparent, you're like that's a lot
, I gotta research this.
But you could ask a networkmember that maybe, like they
like to do research, they couldresearch it for you, come to the
(15:04):
meeting and talk about it andthen, of course, ultimately as a
parent, it's our decision,right.
But you could ask for that helpand then from the road, like
for me, I have guardianship ofAlexandra because I felt like
that was our best option for her.
But you know, as of right now Idon't really have a successor
guardian, but I'm hoping downthe road over time maybe
(15:25):
somebody in her network orsomebody will say you know, I'll
take over that part.
That doesn't mean they're gonnatake care of her, but maybe
they'll say you know, ifanything happens to you or I'll
take care of that part you couldhave you know.
Another goal for your networkcould be to have an emergency
plan, like if something happensto you, like what's the what's
(15:46):
why we do you know immediatelyin an emergency, you know if
Sandy's incapacitated orJennifer's incapacitated.
So this is, I mean, it's justan amazing idea really, right?
I?
Sandy Deppisch (15:58):
mean.
It's incredible, and what I'mhearing is that it might be
really beneficial, if you're aparent of a younger child, that
you're making a personal networkfor, to have a seasoned parent,
like you said, with adisability, on your team, your
child's team.
Because we've been down theroad, we know some of the
hurdles that we had to jump over.
It's kind of second nature forus.
(16:20):
We'd have a lot of resources.
You know at our fingertips thatthey might they might not even
know what guardianship is, orsupported decision making or
power of attorney is.
Even hearing those terms islike what?
So we could be part of thateducation piece for them, you
know.
So then we have to findsomebody who's much further down
the road for our 20 somethingkids.
(16:40):
But yeah, I think that would bereally helpful to have that
Absolutely and you know.
Jennifer Vincent (16:46):
Another thing is you could bring in speakers
to your meetings.
So, like you were saying, youknow you could have somebody
come in and present to yournetwork.
Talk about dual diagnosis yes,I love that.
Yeah, speak about a specifictopic, because each meeting, as
you go, you're going to want toalways have so.
Initially, the parents, ideally, you know, you provide a little
(17:07):
light dinner, snacks orwhatever, but then down the road
again, to take it off theparents, you could set up a
potluck and then network can belike how they want to do it?
Well, bring something.
Or again, the goal is to takethe stress off the family.
So then your network memberscould decide you know how they
want to handle that.
You know, for future meetingsWe'll bring potluck, you know,
(17:31):
and take that off so that theparent doesn't have to do that.
So then you always start outwith, like I say, about 30
minutes of just socializing,having, you know, some food,
maybe drink it, you know, glassof wine, depends on who you are
and then you start your business, your meeting, and you always
want to have an educationalpiece, you know.
(17:51):
So you know a topic.
But then you also want to makesure you have fun.
You want this fun, you know,for your group.
You know this is what it'sabout.
It's about having a good life.
So you also want to be withyour network.
You want people to other peoplein your network to tell what's
going on with their life right,not just about Josiah or us, but
(18:12):
so that you form that community.
Sandy Deppisch (18:15):
When I heard you talk at our GHFEDS parent
education meeting about this,you were going on and on and so
detailed about all of theaspects of it, which was amazing
, but my head's going to oh mygosh, we're going to have
matching t-shirts and we'regoing to have hats and I'm going
to have themes for the food.
I just got so excited aboutthat creative side of it, which
I think would bring the fun in.
But you bring up a veryimportant point that I'm sure
(18:38):
you're going to touch on.
I just want to mention it whilewe're in this section here.
So Josiah as the center of hismeeting and Alexandra as the
center of hers they are anintegral part of this process.
Correct, correct?
Yes, I can't imagine Josiah isgoing to sit for longer than
five minutes at this meeting.
Is that okay?
Jennifer Vincent (18:59):
It is absolutely okay.
So, ultimately, you want Josiahand, like Alex, you want them
to be a part of it because we'retalking about them.
You want them to participatehowever they want to participate
.
But I've seen some networksthat the individuals they don't
want to participate, they're notready, and that's okay, but the
family and that individualstill needs support right.
(19:21):
So you still have the meetings,but it's an evolving thing.
But you want Josiah, you wanthim to be comfortable.
So if he's like done after fiveminutes and he's out of there,
that's okay, because this is allabout him and for people to
understand that, about him.
Sandy Deppisch (19:40):
So no, and he'd be in the area.
He just wouldn't be in themiddle of the group, Right,
right right, but we just alwaysremember that we're talking.
Jennifer Vincent (19:50):
It's about the person at the center, right.
And so we want to know, we wantpeople to understand how they
can like okay, this is too muchfor him, he's leaving.
Like understand.
That's why the education comesin too.
Like, understand how Josiahcommunicates and also how to
communicate with him.
So that's an educate and sometopics you could talk about down
(20:13):
the road financial, so peopleunderstand in your group Because
, just like we know, a lot ofpeople don't understand that
with our children, if they getSSI, that we can't have somebody
leave the money, that's gonnahinder them.
And so educational piece.
Or how SSI works, if they getSSI or SSDI, and that
(20:37):
educational piece that could bea topic at one of your meetings
If they're younger arts IEPs, totalk about those things,
medicaid waivers, to have thatas an educational piece.
And then developing a carenotebook and having what's a
care notebook?
So a care notebook would bebasically everything about our
(21:01):
kids, right, what supports theyneed.
Okay, josiah, we brush, wake upin the morning, what his
routine is, what he likes anddislikes, where his doctors are,
like in a notebook you developin detail Because if you think
about that, it's one of my goalsfor Alexandra because I haven't
done it yet, but to develop acare notebook.
(21:23):
But your network can help withthat.
But because it's so muchinformation.
This summer I dropped Alexandraoff at the Texas School for the
Blind and visually impaired fora week and it's like we got to
the dorm and I'm trying to thinkof everything to tell them okay
, when she says no, no does notalways mean no which is like the
(21:44):
opposite of what we teach ourkids.
Right, but she's gonna say no,that doesn't mean she won't
comply.
But all the things that Ineeded to tell them like, okay,
she needs this, she can brushher teeth, she needs assistance
with this.
Assistance with that in such ashort time.
But there's just so muchinformation about our kids, what
calms them down, what they like, what they don't like.
(22:06):
A care notebook is just allthose details.
That's a genius idea, yeah, soone of your goals could be to
and even your network memberscan help you with that, they can
help you develop that.
So, and then you can even dosubcommittees.
A lot of networks dosubcommittees.
So, like Sandy, I mean, somepeople think we're not as cool
(22:30):
as we think we are.
But the younger generationmight be like mom, maybe you
shouldn't be dressing and notjust like because in the Elmo
shirt it's 25.
So all the times networks willhave, like the younger cousins
that are in their ageappropriate peers, be in a
subcommittee to help with what'scool to wear, what's
(22:53):
appropriate to age appropriate,where the cool place is to go,
because you think about that too, like for us, our kids are
getting older.
I mean Alec Andrew turns 22 onSunday and does a typical 22
year old wanna hang out with momall the time?
Sandy Deppisch (23:10):
Not at all.
Jennifer Vincent (23:12):
So that's the other thing.
You wanna figure out ways thatwe can support them and them
needing support, but not have tobe dependent on us too, because
that's not fair to them.
Sandy Deppisch (23:23):
Right, it's not fair to them.
And the whole Carenet, theCarebook thing, I'm still stuck
on.
That is so cool because in theevent that you're absent not
that you're gone off the face ofthe planet, but that you're
absent maybe you get called awayfor an emergency.
Relative needs you and so nowyou have someone stepping in to
take care of your child.
That's so exhausting to explain, like you just did with her at
(23:47):
camp, all of that stuff and forthem to retain all that.
But if you have it in a bookand you just go bing here, you
go anytime.
They need to know they'recomfortable, your child's
regulated because their routineis this consistent.
They're gonna have to bedealing with mom's gone and
there's this different personhere, but everything about their
life pretty much remains stableand the same, and so that gives
(24:08):
them some peace.
I love this idea.
Jennifer Vincent (24:13):
Yeah, yes, that's one of my goals in my
network is to get that care plandone.
So but yes, they don'tunderstand the change.
And so, again, that goes intobehaviors too, this behavior
maybe they're expressing thisand that could be in your care
notebook just yes, their routine, their likes, their dislikes,
(24:34):
their needs, medications,developing an emergency plan,
like if there's a naturaldisaster where we live.
And so how would the personalnetwork help in that too, that
you could develop a emergencyplan?
And then down the road,long-term goals.
(24:56):
We have to think of where willour kids live when down the road
.
And one thing about that issometimes we just have to break
it down, and the personalnetwork can help you too as you
break it down, because we'realways like, I know, I always
think about the big picture.
I don't know where Alexandra'sgonna go when I'm gone, because
it's like, okay, what happenswhen I'm gone, but you gotta
(25:19):
break it down into little steps,like okay, what supports does
Alexandra need where she lives?
So let's start there.
Versus where's she gonna go?
But you gotta figure out whatsupport she needs before you can
figure out where that place isgonna be.
You know, does that make sense?
So, yeah, so.
Sandy Deppisch (25:40):
And it's not as overwhelming as the parent to
wrap your mind around somethingwhen you can break it into
bite-sized pieces like that,right, right.
Think about the needs first.
Jennifer Vincent (25:49):
Yeah, and for some people, employment, you
know, is something that thenetwork can help with, to
creative thinking,self-determination, you know.
That's another thing for ourkids.
And then, as a network member,in their involvement it's
important to let members know,because all our lives change.
(26:13):
But if a network member needsto leave, that they work on
replacing themselves.
They help, you know.
And another thing, that as agroup you can recruit members,
so like, if you want, you know,your network small I know, sandy
, you have this huge list and Idon't think you're gonna have
any issues but I've worked withsome networks where they're
(26:34):
really there's like, oh, wedon't have anybody to invite and
they're small, but that couldbe a goal to figure out other
people to invite to the network,you know, as a network goal,
like, okay, we increase ournetwork, so let's all get
together and think about otherpeople that we could include.
Okay, that's great.
I'm looking here at my notes tosee if there's anything else I'm
(26:56):
missing.
It's a, it's a.
I feel like it's a lot, butit's really.
It's just such a simple thingand it doesn't cost anything,
you know, and it's just so, andit's just something that we I
don't know why we haven't beendoing it all along, right, right
and you know, and somethingthat I shared recently, is that
oftentimes people want to help.
Sandy Deppisch (27:16):
They don't have a clue how to help and
oftentimes the person who needshelp like in our case, parents
who are overwhelmed with thecare of our children who have
different needs we don't like toask for help, we just assume
the role, which is why, in afamily of two people, one
usually knows it all.
Like you said, your husbandwouldn't know all that.
(27:38):
My husband asked me thismorning where are the Clorox
wipes?
And I was like okay, where doyou think they might be?
You know not to becondescending, but right, right,
that's a little thing you knowwhen we're talking about
complicated issues with ourchildren, right?
So, yeah, I think it's.
It's great to have these groups,because as parents, we don't
(27:58):
like to ask for help, but if welet people know, hey, we would
love your support, they wouldlove nothing more to come
alongside and offer that becausethey want to.
They just don't know how.
So this is just such a greatway to match those two needs the
people who want to support youand you who need support and
just having a facilitator likeyou're the person that comes in
(28:19):
and says, hey, guys, they needsome help.
Here's how we can help them.
It's not really uncomfortablefor us to be doing asking
because you're doing it Exactly.
That's kind of great?
Jennifer Vincent (28:28):
Yeah, it is.
It is because it takes I usedto one of my facilitator peers
to facilitate Alexander'sNetwork for me, which was really
nice to have.
One thing I told her was thereason I feel like I need you is
because all my friends that I'mgoing to invite I'll talk a lot
and to keep them under controland organized, because they're
like I, like Jennifer, we'rejust here to have fun.
(28:51):
It's like, no, we needstructure and I need you to help
with that.
No, but you will be surprised.
And even family members let's behonest because of parents we do
it all and I know for mepersonally, I like to protect
people and I hate to and that'snot the correct word, but
sometimes it protects peoplefrom my child, I mean, because I
(29:13):
don't want them to see her in anegative light either, like
family members and stuff.
So I'm always trying to makeeverybody see only the positive
side of her.
But in your network sometimesyou have to if your kid hits or
pulls hair or bites, or I mean,some of our children have
(29:34):
behaviors and you have to openup and let people know about
that too.
And again I say, behavior isalways communication, that's
another thing to make surepeople understand, but let
people know that sometimes wehave hard days and be vulnerable
, you know, because everybodyhas hard days.
So, I'm just going to share alittle bit on somebody else's
(29:58):
network.
I'm not going to use any names,but there's this network that's
been together for over 12 yearsand for the first three years
they met four times a year andthereafter three times per year.
At the start of the networkmeeting, like we talked about,
they enjoy a pot like meal.
The first few years the networkfocused on learning about the
(30:19):
person that centers, servicesand supports.
After a couple years they,individual network members,
committed themselves to learnmore about specific supports
that that child needed and I saychild but you know I mean all
our children are talking andthen they became experts on that
specific topic specific members.
(30:41):
One year the network, like wetalked about, developed an
emergency action plan so thatthe network members would know
what to do if the parents wereunable to care for him.
So they had a plan on whatwould we do if something
happened.
You know that network developedthat plan Another year.
The network helped the familyprepare for transitioning out of
school life.
(31:01):
See, you and I are there andthat, for me personally, that
was my big thing, like I'm aplanner and it's like, oh my
gosh, my daughter just finishedschool.
She's had an educator in ourhomes and she was two months old
because she was visuallyimpaired.
We've always had a teacher, youknow, besides DCI, we had a
teacher from the school districtin our house, you know.
(31:21):
And now she's 20, going to be22.
And even though I'm okay withthat, it was still like I don't
have a specific plan.
It scares me not to have a plan.
And people are always lookingat me like Jennifer, you know
everything, you do everything.
What's your plan?
What's your plan?
Like don't ask me that, becauseI don't.
I mean, I have ideas, but Idon't have something.
Like, okay, when school startsback in August and other kids
(31:44):
are getting on the school busAlexandra's not getting on that
school bus anymore what do wehave Anything you know written
out Like, what are days going tolook like?
I'm like it's summer, but wealways do summer, so I'm okay
with summer, but I don't havethat figured out.
But I think it's great if youstart when your kids are in
school, like I'm currentlyworking on a network with a nine
(32:06):
year old, which I think is anamazing you know, and for the
family because they growtogether.
Sorry, I get off, but I'm thisone let's see Out of school life
and it says most recently, thenetwork explored creative living
(32:28):
options for this person, andthat's the thing that.
So the network helped explorethat.
And the last 12 years have beena journey for the network.
Over time, members are becomingcloser to each other, more
cohesive and more invested inthe person that centers future.
This is one person's personaljourney with their network.
Sandy Deppisch (32:52):
And that's interesting because they took a
few years just to be educatedExactly.
Jennifer Vincent (32:57):
So that's what you have to remember.
It's not something that youjust rush.
You just like us.
We develop our personalnetworks over time, like you and
I.
I mean, we met each other in amusic together class years ago
and we see each other here andthere, but I feel like recently
we've kind of bonded more.
At least I feel that way.
Sandy Deppisch (33:17):
Absolutely.
Jennifer Vincent (33:18):
And we all end up in different journeys in our
life and people come and go,but same with our kids Like it's
an evolving I mean.
I might own personal supportsand needs change right Over time
and our kids do the same wayand so it's an evolving process
and so and things change.
So what your child needssupport-wise when they're in
elementary is totally differentwhen they're an adult.
Sandy Deppisch (33:42):
So you know.
Jennifer Vincent (33:43):
Exactly.
Sandy Deppisch (33:45):
Yeah, and then let me ask you this.
This just popped in my head.
So assume that a child who isnow a young adult maybe you know
there's a network that's workedwith them for years, it's been
a support system and then thischild, young adult, transitions
into group home living, forexample.
Does the team still meet, or dothey or they?
How does that work?
I never thought about whathappens when there's a big
(34:06):
transition.
Jennifer Vincent (34:08):
Each network is different, obviously.
So it's kind of however youguys do it.
But I can say I'd say yes, youdefinitely.
Because I mean for mepersonally with my daughter I
think she has a lot of medicalneeds and right now I don't see
one person really being able tomanage that if anything happened
to me.
So I see that probably shewould end up in some kind of
(34:29):
medical facility or a group homethat would be able to manage
her needs.
But that was one of my thingswhen I did my invitation meeting
that I told people Like if thathappens, I want her to have
that network to me and supporther and so then they can still
meet with her.
Right, they can pick her up or,you know, go there but and then
(34:49):
figure out how you know theysupport her.
You know whether it be somebodymaking sure, you know, making
sure her personal needs are met.
You know, again, everybody hastheir strengths but I just don't
want her to be.
That's not a end all for her.
It's the placement and thepeople that are there.
So that was one of my, I cansay one of the networks that I
(35:12):
had heard about.
That's been meeting for yearsthe parents, they were trying to
schedule a meeting and theparents were going to be out of
town, so they said that.
So that's, it wasn't a goodtime for them.
So the network met anyway bythemselves with the person at
the center, like they met outparents, and you know how nice
is that that the network was.
So you know, connected thatthey're like we don't need you
(35:34):
guys here to meet, we'll meetwithout you, that's fantastic,
no, and so that's kind of.
You know, it would be nice forour kids, right Like when we're
not able down the road, that thenetwork would maybe meet
without us, cause, you know, wealways feel like we're so
connected with our kids.
But the whole purpose is to getother people to be able to
connect with them.
Sandy Deppisch (35:53):
Yes, Well, so you mentioned that the grant is
going to be ending soon.
Was there a specific deadline?
If people want to do this, tellus a little bit about that.
But then how?
I know you gave the website inthe beginning, but how do they
connect with you or with?
Jennifer Vincent (36:10):
So the best way would be to go through
parent to parent on the TexasNetworks Connection website and
then they could just request afacilitator and if they want
cause, there's otherfacilitators.
I'm not the only one out thereand you know, there's
facilitators all over the stateof Texas.
So, which is great, this is notjust, and you could start a
(36:32):
network without a facilitatoryou know, you start one on your
own.
So just know that.
But so currently I believe thisgrant actually ends in August,
but there may be another grant,so don't think that you know
that you can still you knowinquire about it.
I know that Texas Parent toParent is really good about
working on getting funds fortheir programs, so but at
(36:54):
texasparenttoparentorg TexasNetwork Connections is the
program.
Sandy Deppisch (36:59):
So Okay, that's fantastic.
Yeah, I think this is somethingthat's so invaluable.
You know, for a while, as agroup there are GHFeds, which I
mentioned, I think, in everypodcast, but our GHFeds group
was meeting and we were workingon emergency plans.
You know what happens when wedie and where is all of our
information for banking, and youknow all of those important
(37:20):
things that anybody would needto know, regardless of whether
you have a child with adisability or not.
But having a child with adisability kicks it up 100 fold
because, like you said, theyhave so many support needs that
people don't even know about.
And having a plan in place,having not just the plan here's
(37:40):
the book, here's the numbers,here's the computer links that
you need these are people thatare vested in your child and
know them so well over time thatyou're like you got this, we're
good, you know, and so it's notjust a book, it's a
relationship, and I think that'sthe key.
Jennifer Vincent (37:57):
Exactly.
And then you know all ofeverybody has strengths, and so
that's the thing and abilities,and so people in your network
that care about you guys, I mean, they're gonna be the ones who
say you know what, I'm good atthis, I can take this part,
cause our kids really.
It does take a village, right,and that's the whole point.
It takes a village and as weget older, I think you know we
(38:18):
get tired too, and so it's justnice to have that sense of
relief, like okay for mepersonally that I've set up
something for my daughter,because I feel like I am not
doing her justice.
If I am the only one that knowshow to care for her, knows how
she communicates, and I'm notsetting up a quality support
(38:41):
system for her, I'm not doingher justice.
So it's such a relief to knowthat you know and people, like
you said, people want to helpbut they just don't know how and
talk about family members andstuff too.
So over the years, you know yougo to family events and stuff
and you see each other and a lotof times it's like do you want
to spend an hour talking?
(39:03):
You know, and they're like, howare you doing?
You're just saying oh, we'regood, we're doing this, we're
doing this.
But do they really want to hearover Christmas holiday how
you've been to the cardiologist,how you've been on the phone
for hours with Medicaid?
We don't share that informationbecause they don't understand
it.
They don't want to hear it.
But if you invite family I feellike family members in your
network this is a place to sharethat, because you've got the
(39:24):
structure where they're like wow, we did you know.
Even I know my own family.
They have no idea what I reallygo through.
I think it's because we don'twant to burden them with that.
But when you're developing yournetwork, you're not putting a
burden on somebody.
Sandy Deppisch (39:39):
You're sharing information in a structured
setting and I think that's agreat way to share what we go
through too, versus you know,and mentioning burden being a
burden, you know, oftentimessiblings of the individual with
a disability, whether it'sspoken or unspoken, might feel
what is going to happen whensomething happens to my parents.
(40:01):
Oh my goodness, what am I goingto do?
You're taking that off of theirshoulders so that they are
aware.
Hey, look at it's, it's avillage that's going to be
supporting.
It's not just on your shoulders, you know, and I think that's a
big help.
And something else I wanted tomention which is going to be
integral in our case we have alot of family that's out of
state.
Zoom, they can zoom in on thesemeetings so they don't have to
(40:24):
be there in person, right?
Jennifer Vincent (40:25):
Yeah, so I've conducted meetings in several
formats but One.
Sometimes you could just dozoom, like with the pandemic.
You know, some networks wereformed just on zoom.
Ideally in person is alwaysbetter, right, but I just did
one the other night and it washybrid one siblings in Colorado
and other siblings in Florida,and then the other family was
(40:47):
there, and so I mean the hybridworks so well.
And you know, even me personally, once I started my invitation
meeting, I was like okay, well,should I make this person out of
state?
I was like no, but since then Ihave a friend of mine that I
went to school with, that livesin South Carolina.
She, she, she was in town whenwe did Alexandra's first meeting
(41:10):
.
So I was like you know what,let me see if she wants to come,
like she didn't come to theinvitation meeting but our and
so just like yes, and so nowshe's joining us on zoom.
And then I realized the otherday, just the other day, I was
you know, you start processingpeople that you can add so and
and I was like Alexandra had anattendant that loves her and
connected with her right, and soshe went into the Navy, she
(41:33):
worked for us when she was 18 inhigh school and now she's in
her 20s and she's in the Navyand she's stationed in
California and but when shecomes home she's still visit.
She was the first person evertook Alexander to the movies by
herself and I was like, what youwant to take my kid?
And I remember her coming homeone holiday when she was living
in Austin with a boyfriend andtook on Christmas Day, took
Alexandra to see Alvin in theshipmikes, like oh, and I was
(41:56):
like, and she was a talk aboutsibling.
She was on the swim team withmy older daughter and that's how
we met her and so your,honestly, that have become
connect.
You know, think about supportsystem to the friends that have
been in their lives, but they'renot only gonna be supporting
Josiah, they're gonna besupporting their friend right,
(42:17):
Right yeah as a support system.
So that's why I say just thinkoutside the box.
So I thought you know what I'mgonna.
We were just Texan, because shewas like, oh, I'm stationed in
California for the next fiveyears or something.
And I said and I Said, oh,we're gonna have to make a trip
and come out there and see youand San Diego.
And then I said you know what?
And I thought you know, I'mgonna invite her because she can
(42:38):
join on zoom, right.
So I was like I would love tobe a part of Alexandra's network
, you know.
And I thought, because shealways got, you know, some
people just naturally get ourkids and and connect with them
and she was one of those peoplethat did.
And so now, even though Ididn't invite her to the first
meeting, invitation me.
I have invited her now andshe's gonna join in our first
(43:03):
meeting or our second, thirdmeeting in August and on zoom.
So, yes, zoom works really welland even though you think, how
can people support you whenthey're on, you know, in another
state?
But sometimes it's just theknowledge, right, sharing and
down the road.
You talked about siblings.
You don't want it, you're alljust.
(43:24):
You know, like I know, you haveseveral kids right, and I have
three and but you don't want itto just be like, okay, who's
gonna do what like the same, butagain they get that educational
piece and then they can decide.
You know what I can do this?
Because they're learning right,even though they see it, but
they see it from the sidelinesand then they also see they can
(43:44):
get support.
Sandy Deppisch (43:45):
So they're not alone and you know.
Jennifer Vincent (43:48):
If you guys do become where you're not able to
care and even now and day today, like how can they support
their brother, how can theysupport their parents?
But how people support them asa sibling to our children, so I
mean it's a, it's a.
It is a huge relief for thembecause I know, as parents, we
don't want yeah, we don't wantto put a burden on our other
(44:10):
children and we don't want themto feel like they don't have a
choice.
Right, want them to know thatthey're supported as well.
So it's not just about thechild and the parents, but it's
also about the siblings, so theentire family.
Sandy Deppisch (44:22):
Yeah, that's amazing.
This is just such an incredibleidea.
I'm so glad that they startedthis in Canada and it's worked
its way here and and that you'renow doing this, because I think
every single person who hearsthis In some way or another, if
you have a loved one that hassupport needs, you need to reach
out and get this processstarted.
It's just gonna make a wholehuge difference in your life and
(44:46):
you make the whole process soeasy Jennifer too.
So.
Jennifer Vincent (44:50):
Yeah.
Sandy Deppisch (44:50):
I mean so far.
We've only been in thebeginning stages.
We haven't had our firstmeeting yet, but but I'm looking
forward to it.
Jennifer Vincent (44:56):
I have to say I just did one couple of nights
ago and the mom had Emails orcalled me the week, a lot the
week before, and she's likeJennifer, I hate to tell you
this, I got some bad news andshe's like I just don't think I
can do it.
You know, like she, just she'slike you just don't understand
my family.
They just don't want to helpand they don't understand and
(45:17):
they don't and I, you know, Imean I hate to say I co-hurried,
but I convinced her.
I was like I promise it will beokay, just, yeah, it's going,
I'm gonna do all that and thenif it doesn't work, you don't
have to.
And then she called me, youknow, the next morning not
yesterday at, because themeeting was Wednesday after, and
she's like this was sowonderful, my kids were, they're
(45:38):
eager, my sons alreadydeveloped this communication
tool for the group and my otherones already named it.
This was just the invitationmeeting.
And then my in-laws were justlike, you know, she's like and I
, and she said I feel such arelief now, right, oh, and so,
and that was just the invitationmeeting.
We, you know so, and I was like, yeah, because sometimes the
(45:59):
invitation is the hardest part,I will say, because it's like
I'm asking people for somethingyeah, like we talked about, and
so it does help to have thatfacilitator there to To do that
for you, so you don't have tofeel that as a parrot, because
it's hard.
Sandy Deppisch (46:14):
Yeah, yeah, definitely, oh.
This is just so amazing, soexcited that you came on and
shared this with us, and ifpeople need to reach out to you,
we'll put your contactinformation Absolutely notes as
well.
Jennifer Vincent (46:26):
Yeah, they can always email me my personal
email as well, and.
But yes, I just want people toknow I'm not the only
facilitator out there, so theydon't have to like you know and
and that that they can't reachout if they would like somebody
you know Different well, anotherthought just popped in my head.
Sandy Deppisch (46:41):
So we're talking about Texas.
Other people might not be inTexas.
Do they have something similarin other states that you're
aware of?
Jennifer Vincent (46:47):
I don't believe so, because it was a
couple of parents that found outabout this program and and
Canada, and they said you knowwhat?
We've got to bring this here.
Sandy Deppisch (46:57):
So, jennifer, I'm envisioning some travel for
you and I, so I'm gonna be along, I'll be the person that
facilitates the travel for youand you be the person just to
get this going in other states.
Jennifer Vincent (47:10):
I know, I know it is.
I mean I when I, when I firstheard about it years ago and now
that I'm started it, I mean I'mjust, I'm passionate about it.
You know, I mean I just becauseI know for me personally and
for other families that I seeall you know so often that just
feel so alone and isolated.
You don't have to be, you know.
I facilitated another one andthe the mom was like I don't
(47:33):
think anybody's gonna come.
She had a huge.
She had people on zoom Locallyeven that just couldn't attend
in person.
She had people from out ofstate.
She invited people from thelocal library Thanks for
daughter to the library, big forherself, for book club and
(47:53):
craft, so she can get out.
And her daughter has adisability and she takes her and
so I told her you know and, butthink outside, like we talked
about your neighbors and right,and Think outside the box.
So she's like you know, wetalked to these people and when
I went, if I don't bring mydaughter to the library with me,
they're like well, where's yourdaughter?
And you know they seem toreally good.
So she and two people from thelibrary came to her meeting and
(48:17):
they were just you know, and andthen she said there was an
attorney there and she said Iasked him.
He was a younger guy and hecomes to book club or whatever.
And so he said well, I don'tknow if I'm gonna failed attend
the meeting or join the network,but I'll tell you what if you
ever need an attorney, if you oryour daughter ever.
(48:39):
No, if your daughter, who has asignificant disability right,
ever ends up in trouble with thelaw or gets arrested, call me.
Here's my business card, so younever know what connections
you're gonna get reaching outlike.
Sandy Deppisch (48:54):
That's so great network.
Jennifer Vincent (48:55):
He offers legal services if she ever got
Trouble.
Sandy Deppisch (49:00):
That is awesome.
Well, I'm so grateful thatyou're here today and I think,
like I said, sharing thisinformation, getting it out so
that people know this isavailable as something that is
gonna make a difference for alot, a lot of folks.
So, thank you so much, jennifer, andy and we'll we'll have you
back again next time youdiscover another new amazing
(49:20):
thing.
Jennifer Vincent (49:21):
Absolutely.
Hey, I did want to say I justyou know, you know, you know I'm
crazy, but I did just recentlybecome trained for tag
Facilitation.
Which is what is that?
I'll be brief it's transitionaction groups.
Okay, I know.
So that that's a whole, notherwhole another podcast, but wait,
(49:41):
wait.
Sandy Deppisch (49:42):
Already started teasing us, so tell us what that
is.
Jennifer Vincent (49:45):
A transition action group is where you get
and you know, again, people canstart on their own a group of
parents I say parents or people,get together because they have
goals, whether common goals orthey could even be different
goals of things that they needto work on.
So and I and again I have togive a plug the Texas
parent-to-parent they have agreat transition inventory tool
(50:07):
when you can go through becausetransition is big right, we
talked about Bridget and toschool, to arts, to adulthood,
to all the things that you need,and I mean I just love that
tool.
But I know, personally, I havegoals, you know I have this huge
list, but you, you develop, youget in a group and you could do
in person or on zoom again, andyou Go through your transition
(50:29):
inventory of things that youneed to work on and then you,
you create a goal and then, andthe thing is that you accomplish
that goal.
So that's where the actioncomes in.
So it's a tradition actiongroup.
So, like in, you meet, let'ssay, just three or four meetings
over six months, are you don't?
It's not like you're not like apersonal network where it's a
(50:50):
growing thing for years, becausethe whole purpose is to figure
out what you need to get doneand encourage each other and
support each other and and andGet your goals done.
You know, so we'll be starting awill, I'm getting guardianship,
and then again it's one ofthose things where you break it
down in steps.
Okay, so you break it down insteps where you say you know
(51:13):
what's step one making the phonecall right.
It could be as simple as I knowI need to get on the interest
list for these Medicaid waiversand I haven't done it.
You know right step one.
You know right you, you breakdown your goals and steps and
then so you're gonna meet andyou're gonna go through your
transition inventory, you'regonna set a goal and then you're
(51:33):
gonna say, okay, I'm gonna dothis portion of my goal before
the next meeting.
And then I think I always thinkof personal networks and
Transition action groups, justthings it helps with account of,
like my own accountability.
Sure, you have a deadline tohave a deadline and then you
know You're gonna meet and thenyou talk about where you're at
and how you met that goal andthen you break.
(51:54):
You know you can break it downagain the next month, like, okay
, now I need to do step two andthen your group meets and you
and you support each other andyou can also, you know you talk
about how we're supportive.
Some of us don't want people togive us advice.
That's not supportive, right,you know?
Or some people do.
Some people feel supported ifthey get like oh, you're doing a
great job and some people don'tlike that.
(52:15):
So you kind of, you kind ofalso you address, like those
things.
So it's not really a supportgroup because it's an action.
You're there to get things done.
But again, it's anotherwonderful tool to use for us
parents to help our children,and that's what I'm always
looking for to make life betterfor my daughter and, you know,
other individuals withdisabilities and for ourselves
(52:37):
as parents like, so we don'tfeel so much stress on.
Yes, I don't know who's Sandy.
But now it's like for mepersonally, like okay, alexandra
finished school.
I thought I'm gonna deadline,like you know.
Sandy Deppisch (52:51):
I know I always think like the windows closing.
I have to.
Jennifer Vincent (52:57):
How did I spend 21 years and I'm not done
right?
Sandy Deppisch (53:00):
It's never ending.
But you know, speaking ofstress, this is why those of you
that are listening, you can'tsee this, but Jennifer and I
both have on backgrounds wherewe're at the beach with a palm
tree behind us and the waves,and the whole time I'm recording
this, I'm just looking at thosewaves like this is the most
peaceful way to do a podcast.
I love it.
Yes, thank you again, jennifer.
(53:22):
I love everything you sharedwith us and I look forward to
having you back again soon.
Thanks for listening to theembrace the blessing podcast.
Visit embrace the blessing commSlash podcast for show notes
and links to any resourcesmentioned.
If this has been beneficial toyou, please share it with a
friend or post it on your socialmedia pages.
Join me next Wednesday for moreinspiring stories from people
(53:45):
just like you.
Hey there, I'm Sandy Deppish and this is the
Embrace the Blessing podcast.
Each week, I talk with a parentwho has a child with a
disability.
They share their biggestchallenge, their greatest joy
and their hopes and dreams forthe future.
You'll learn about resourcesavailable to you and discover
helpful hints and tips.
If you want to be inspired andencouraged, stick around.
(00:28):
Let's walk the road lesstraveled together.
Well, jennifer, thank you somuch for being here.
You know I was thinking aboutit as I was logging on this
morning.
You were my very first guest onthe podcast way back here half
(00:49):
ago.
You were Embrace the Blessingnumber two, so if anybody would
like to hear Jennifer's firstepisode, feel free to go back
and find that.
I'm excited to share with usthen about your amazing daughter
, alexandra and about yourincredible family, but now you
have something exciting to sharewith us that I think a lot of
people are going to want to hearabout.
Tell us a little bit about whatit is you're here to talk about
(01:12):
today.
Jennifer Vincent (01:13):
So I'm here to talk about personal networks
for your loved one with adisability, and with saying that
, I have to let you guys knowthat this format is through the
parent to parent, Texas parentto parent organization out of
Austin, that covers state ofTexas and they have a specific
(01:34):
program called Texas NetworkConnections that specialize in
personal networks and I havebeen trained and I am now a
personal network facilitator inthat program and so the program
typically is a $750 charge, flatfee, for a facilitator to
(01:55):
facilitate these meetings.
But they currently have a grant, which is wonderful.
That's going to be ending soon,but and hopefully they'll get
another grant, but just sopeople know, if they want to
take the opportunity to utilizethat grant, now would be the
time to go to Texas parent,parent to parentorg and and
check it out and under TexasNetwork Connections.
So have to give them the plug,because that's why I'm here
(02:18):
doing this.
So actually I have learnedabout personal networks several
years ago at a conference it wasactually a DB mat deafblind,
multiple disabilities conferenceand I thought you know, I need
to do this for my kid.
But just like all of us, right,we have all these goals and
(02:38):
things that we want to do andand are we're just busy, right,
and it's hard to catch up, andso I would say it's a wonderful
thing to do at any age.
But for me, when I found outthat Texas, parent to parent was
doing facilitator training, Iwas like, okay, this is my
opportunity.
So I contacted them and and gottrained to be a facilitator.
(03:00):
And then I was like, okay, well, now my facilitator.
Well, I could be a betterfacilitator if I was having one
for my, my own daughter, right,so I did one for her.
So, but let me just and I kindof talk all over the place, so I
apologize, but I'm just goingto read the definition of a
personal network real quick.
(03:20):
I have a, so I'm going to readit off my paper here the
personal network is anintentional community of friends
and family members whovoluntarily commit to support a
person or family who is at riskof being isolated and vulnerable
by reason of chronic illness ordisability.
So, even though I had saiddisability previously, you know
(03:44):
there's individuals that aremedically complex or, you know,
have a chronic illness and theystill need support because
they're at risk for beingisolated as well.
So it's not necessarilysomebody with a physical
disability or an intellectualdisability.
It covers all spans of life.
Personal networks promoteplanning and opportunities for
(04:04):
support.
They assist with decisionmaking and goal setting and work
with the person at center andthe family to be a sustainable
resource.
Sandy Deppisch (04:15):
Amazing.
You know what I hear when youread that, like I just feel this
huge sense of relief, like youcan take a deep breath.
I mean, josiah is 21 andhearing about this now is is a
perfect time, but I can imagineif we had heard about this 10
years ago, like what adifference that would have made,
because you I mean you're thequeen of this, of researching
(04:37):
and constantly being the oneperson who is always trying to
figure everything out for yourchild.
What's the next step?
What do we do about this?
How do we fix this?
And it's all consuming.
And what I'm hearing you say isthat doesn't have to be the
case.
Now we can have a team, like wecan be a team and they can go.
I got this, I got this.
Oh my gosh, so amazing.
Jennifer Vincent (04:58):
Love it it is.
And the concept, and I will saythis, this was actually
developed out of Vancouver.
Okay, because there was a group, and you know, over there and
can they have incredibleresources right in that country
where we we don't, especially inTexas, right, we don't have the
best disability resources, sowe're already at risk there.
(05:19):
And even with all thoseresources, there was a group of
parents that got together andsaid you know what?
We still need help and supportand a system for our children.
And so they're the ones whodeveloped it and it's the.
There's a book called Plan andyou can buy it off, even off
(05:40):
Amazon, and it talks about agood life.
So that's the whole purpose ofa personal network is to develop
a good life for our childrenbecause they deserve it right,
and we're not going to liveforever and it's a big burden on
us as parents or caregivers tobe solely responsible for
another human beings life.
(06:01):
If you think about it, you knowon top of our own and you know
work, all of that, and to have asupport system is it, is, it is
a huge relief.
So I thought I'd talk a bit, alittle bit about who network
members are.
So you know, network networkmembers are a group of people of
all ages with a variety ofinterests, abilities, areas of
(06:23):
expertise, talents andconnections.
Each person who participates isvalued for his or her unique
contribution.
And again, I'm kind of readingoff a paper because I just
wanted to be very clear.
I'm very passionate about itand I could talk all day, but I
wanted to give clear information.
So, I don't talk in circles somuch, but some of the ways
(06:46):
network members contribute are,you know, the number one way is
to care about the person at thecenter, and when I say person at
the center I mean, like yourson Josiah, my daughter
Alexandra, they are.
When I use person at the center, they are the person that we're
talking about and the family.
So you know, and one of thethings that network members
(07:06):
would do in a personal network,they'll build relationships with
each other.
So you know.
So you have a support system,like we all.
We develop support systemsnaturally in our lives.
As an individual that's able toget out and drive and socialize
and work, and and our lovedones with a disability, they
really depend on us to help them, you know, access the world and
(07:28):
they don't have thatopportunity to develop those
relationships as naturally as wedo.
Sandy Deppisch (07:35):
So and then the communication barrier.
You know you have an ability tospeak or to communicate clearly
.
That's a huge barrier tocreating social relationships.
Jennifer Vincent (07:46):
Exactly so.
And and you know, the thingabout a personal network is the
people that you.
The step one is to invitepeople.
You kind of you know, youinvite people to your network.
You have an invitation, meetingat your home, you have a little
bit of food or snacks, peoplesocialize, and then so this is
step one you kind of go througha list.
(08:06):
It could be your neighbor, itcould be not you know, it could
be a therapist, it could besomebody from the school, it
could be your family.
I mean, you've got to have tothink out of the box too,
because for our kids, right, butthen that network they come
together and they get to knoweach other.
Because if you think about ittoo, like if your child, they
(08:27):
know you and they know thisperson and that person
separately, but none of themknow each other.
So how do they know to reallysupport the child if they don't
know each other?
So your network needs to bondand get to know each other too.
So you invite them and then youtalk about what a personal
network is and and then you askthem to commit about two hours
(08:48):
three to four times per year,and that's really not a lot.
That's it to come to your houseand have a meeting and more
often at the need arises.
So that's what you're askingthem to commit.
And then when they serve on anetwork, there's different roles
, like I'm currently.
Like I'm a facilitator.
So when I start a network, I goin, I do a work plan with the
(09:10):
family, talk about resources,talk about goals for the child.
Some of the goals, like from mydaughter, one of the goals is
to develop a care plan and forpeople in her network to learn
how she communicates, becausewhat I say for her is she has
(09:31):
limited verbal skills but thenshe has poor articulation too.
So, but sometimes, as you know,is any behaviorist
communication and you don't knowwhat they're expressing, what
they're communicating based on abehavior.
You can't help them in that andyour network needs to know that
.
So that could be one of yournetwork goals is learning how
your child communicates, and sothere's always an educational
(09:54):
piece in the meeting.
So each meeting, after you doyour invitation meeting and
people commit to join and thenyou schedule another meeting a
month, two months out and thentheir first meeting.
One fun thing is you name yournetwork.
So that way you know, it's justfun and you, you know, and so
(10:15):
and everybody is a part of it.
So you name your network andthen people take on roles.
Like, as I said, I'mfacilitator but then I step back
.
So as a facilitator, I do helpyou with your work plan, I do
your invitation meeting and thenI attend the first two meetings
and I send out emails andreminders.
But at your first meeting youkind of talk about the different
(10:38):
roles and you really don't wantthe parent to be the
facilitator again because thesupport system needs to give the
parent a break.
Right, that's like okay, onemore thing I have to do.
So somebody in your networkcould take over as facilitator
and a facilitator their jobwould be, and, or even a
co-facilitator you could havepeople share it, alternate.
But they make sure the meetingstarts and finishes on time,
(11:02):
they make sure everybody's voiceis heard, they leave the
meeting and then you can have ascribe which is basically a note
taker and you don't have to dothat, but it's helpful to have
that information throughout whatyou discussed.
And then they help prepare anddistribute meeting reports to
network members.
You have a meeting organizerwhich they schedule the next
(11:26):
network meeting for you.
They send out the email,reminders or a text or whatever
communications tool you use.
You have a communication leaderand that person is the person
that sets up and administerscommunication tools In some ways
.
Some people have used as GoogleDocs, groupme, et cetera.
There's so many tools out therethat use as a group and then
(11:49):
the communication leader helpsnetwork members access those
communication tools, cause, youknow, some of us are a little
bit more tech savvy, especiallythe younger generation.
So I, like like Alexandra'snetwork, I had a younger person
in their 20s.
She's in charge of ourcommunication tools, you know,
and that's great, yes, and butsome of the qualities and
(12:12):
strengths needed in a networkcollectively include, of course,
compassion and commitment,because we want people to commit
to join.
So if they say, yes, I want tojoin when you have a meeting,
then you schedule the nextmeeting and, yes, things happen.
You may need to reschedule, butsomebody needs to go.
This is on my calendar and thisis important.
(12:32):
And not be.
Oh well, I'm gonna, you know Idon't have to be there, no, it
is important and they need tocommit to, to those two hours,
you know, every month.
And so, and we and it isrecommended that you really meet
every three months the firstcouple of years and then after
that you could alternate, causeit's a evolving process.
Right, cause it's a learningprocess.
(12:52):
Your great bros and then theycan, but they need to, you know,
have common interests.
Another quality for your isunderstanding and awareness of
person.
That centers, strengths,interests and abilities,
knowledge of or willingness tolearn.
Cause it's a learning part.
Right To learn aboutdisabilities, disability issues,
(13:16):
social service systems,community resources,
recreational opportunities,cause one of the things is, as
you know, as a parent I feellike I'm the keeper of all my
daughter's information.
So if something happens, what'shappening to me today, is there
anybody else, including myhusband, that knows?
(13:37):
You know I don't.
He doesn't know how to accessher, my chart for her medical
work, what doctor she goes towhen they need to be scheduled,
where you pick up medications.
If you have supplies DMEsupplies where do they come from
?
Do are you the only one thatknows about the waiver services
and how to access them.
(13:57):
If you have guardianship orsupported decision making, so
it's a lot for one person tohold on to.
So as an as your network, it'shelpful to share that
information.
And then the network members.
So it could be that you inviteanother special needs parent to
be a part of your network tooand that might, down the road,
be like, okay, I'll, I knowabout, let's say, the class
(14:20):
waiver, so they might be thespecialists on the class waiver
for your child, if that's whatyou have, you know.
So each person kind of, as timeevolves and they learn more
about your child's interests andtheir needs and their supports,
then they can take on, takesome off of us as parents too,
and I can help with that on, youknow, or they could research.
(14:43):
Let's say, if you're a younger,you have a younger kid and
you're starting a network andyou haven't decided yet whether
you wanna do supportive decisionmaking, guardianship, or, you
know, power of attorney as aparent, you're like that's a lot
, I gotta research this.
But you could ask a networkmember that maybe, like they
like to do research, they couldresearch it for you, come to the
(15:04):
meeting and talk about it andthen, of course, ultimately as a
parent, it's our decision,right.
But you could ask for that helpand then from the road, like
for me, I have guardianship ofAlexandra because I felt like
that was our best option for her.
But you know, as of right now Idon't really have a successor
guardian, but I'm hoping downthe road over time maybe
(15:25):
somebody in her network orsomebody will say you know, I'll
take over that part.
That doesn't mean they're gonnatake care of her, but maybe
they'll say you know, ifanything happens to you or I'll
take care of that part you couldhave you know.
Another goal for your networkcould be to have an emergency
plan, like if something happensto you, like what's the what's
(15:46):
why we do you know immediatelyin an emergency, you know if
Sandy's incapacitated orJennifer's incapacitated.
So this is, I mean, it's justan amazing idea really, right?
I?
Sandy Deppisch (15:58):
mean.
It's incredible, and what I'mhearing is that it might be
really beneficial, if you're aparent of a younger child, that
you're making a personal networkfor, to have a seasoned parent,
like you said, with adisability, on your team, your
child's team.
Because we've been down theroad, we know some of the
hurdles that we had to jump over.
It's kind of second nature forus.
(16:20):
We'd have a lot of resources.
You know at our fingertips thatthey might they might not even
know what guardianship is, orsupported decision making or
power of attorney is.
Even hearing those terms islike what?
So we could be part of thateducation piece for them, you
know.
So then we have to findsomebody who's much further down
the road for our 20 somethingkids.
(16:40):
But yeah, I think that would bereally helpful to have that
Absolutely and you know.
Jennifer Vincent (16:46):
Another thing is you could bring in speakers
to your meetings.
So, like you were saying, youknow you could have somebody
come in and present to yournetwork.
Talk about dual diagnosis yes,I love that.
Yeah, speak about a specifictopic, because each meeting, as
you go, you're going to want toalways have so.
Initially, the parents, ideally, you know, you provide a little
(17:07):
light dinner, snacks orwhatever, but then down the road
again, to take it off theparents, you could set up a
potluck and then network can belike how they want to do it?
Well, bring something.
Or again, the goal is to takethe stress off the family.
So then your network memberscould decide you know how they
want to handle that.
You know, for future meetingsWe'll bring potluck, you know,
(17:31):
and take that off so that theparent doesn't have to do that.
So then you always start outwith, like I say, about 30
minutes of just socializing,having, you know, some food,
maybe drink it, you know, glassof wine, depends on who you are
and then you start your business, your meeting, and you always
want to have an educationalpiece, you know.
(17:51):
So you know a topic.
But then you also want to makesure you have fun.
You want this fun, you know,for your group.
You know this is what it'sabout.
It's about having a good life.
So you also want to be withyour network.
You want people to other peoplein your network to tell what's
going on with their life right,not just about Josiah or us, but
(18:12):
so that you form that community.
Sandy Deppisch (18:15):
When I heard you talk at our GHFEDS parent
education meeting about this,you were going on and on and so
detailed about all of theaspects of it, which was amazing
, but my head's going to oh mygosh, we're going to have
matching t-shirts and we'regoing to have hats and I'm going
to have themes for the food.
I just got so excited aboutthat creative side of it, which
I think would bring the fun in.
But you bring up a veryimportant point that I'm sure
(18:38):
you're going to touch on.
I just want to mention it whilewe're in this section here.
So Josiah as the center of hismeeting and Alexandra as the
center of hers they are anintegral part of this process.
Correct, correct?
Yes, I can't imagine Josiah isgoing to sit for longer than
five minutes at this meeting.
Is that okay?
Jennifer Vincent (18:59):
It is absolutely okay.
So, ultimately, you want Josiahand, like Alex, you want them
to be a part of it because we'retalking about them.
You want them to participatehowever they want to participate
.
But I've seen some networksthat the individuals they don't
want to participate, they're notready, and that's okay, but the
family and that individualstill needs support right.
(19:21):
So you still have the meetings,but it's an evolving thing.
But you want Josiah, you wanthim to be comfortable.
So if he's like done after fiveminutes and he's out of there,
that's okay, because this is allabout him and for people to
understand that, about him.
Sandy Deppisch (19:40):
So no, and he'd be in the area.
He just wouldn't be in themiddle of the group, Right,
right right, but we just alwaysremember that we're talking.
Jennifer Vincent (19:50):
It's about the person at the center, right.
And so we want to know, we wantpeople to understand how they
can like okay, this is too muchfor him, he's leaving.
Like understand.
That's why the education comesin too.
Like, understand how Josiahcommunicates and also how to
communicate with him.
So that's an educate and sometopics you could talk about down
(20:13):
the road financial, so peopleunderstand in your group Because
, just like we know, a lot ofpeople don't understand that
with our children, if they getSSI, that we can't have somebody
leave the money, that's gonnahinder them.
And so educational piece.
Or how SSI works, if they getSSI or SSDI, and that
(20:37):
educational piece that could bea topic at one of your meetings
If they're younger arts IEPs, totalk about those things,
medicaid waivers, to have thatas an educational piece.
And then developing a carenotebook and having what's a
care notebook?
So a care notebook would bebasically everything about our
(21:01):
kids, right, what supports theyneed.
Okay, josiah, we brush, wake upin the morning, what his
routine is, what he likes anddislikes, where his doctors are,
like in a notebook you developin detail Because if you think
about that, it's one of my goalsfor Alexandra because I haven't
done it yet, but to develop acare notebook.
(21:23):
But your network can help withthat.
But because it's so muchinformation.
This summer I dropped Alexandraoff at the Texas School for the
Blind and visually impaired fora week and it's like we got to
the dorm and I'm trying to thinkof everything to tell them okay
, when she says no, no does notalways mean no which is like the
(21:44):
opposite of what we teach ourkids.
Right, but she's gonna say no,that doesn't mean she won't
comply.
But all the things that Ineeded to tell them like, okay,
she needs this, she can brushher teeth, she needs assistance
with this.
Assistance with that in such ashort time.
But there's just so muchinformation about our kids, what
calms them down, what they like, what they don't like.
(22:06):
A care notebook is just allthose details.
That's a genius idea, yeah, soone of your goals could be to
and even your network memberscan help you with that, they can
help you develop that.
So, and then you can even dosubcommittees.
A lot of networks dosubcommittees.
So, like Sandy, I mean, somepeople think we're not as cool
(22:30):
as we think we are.
But the younger generationmight be like mom, maybe you
shouldn't be dressing and notjust like because in the Elmo
shirt it's 25.
So all the times networks willhave, like the younger cousins
that are in their ageappropriate peers, be in a
subcommittee to help with what'scool to wear, what's
(22:53):
appropriate to age appropriate,where the cool place is to go,
because you think about that too, like for us, our kids are
getting older.
I mean Alec Andrew turns 22 onSunday and does a typical 22
year old wanna hang out with momall the time?
Sandy Deppisch (23:10):
Not at all.
Jennifer Vincent (23:12):
So that's the other thing.
You wanna figure out ways thatwe can support them and them
needing support, but not have tobe dependent on us too, because
that's not fair to them.
Sandy Deppisch (23:23):
Right, it's not fair to them.
And the whole Carenet, theCarebook thing, I'm still stuck
on.
That is so cool because in theevent that you're absent not
that you're gone off the face ofthe planet, but that you're
absent maybe you get called awayfor an emergency.
Relative needs you and so nowyou have someone stepping in to
take care of your child.
That's so exhausting to explain, like you just did with her at
(23:47):
camp, all of that stuff and forthem to retain all that.
But if you have it in a bookand you just go bing here, you
go anytime.
They need to know they'recomfortable, your child's
regulated because their routineis this consistent.
They're gonna have to bedealing with mom's gone and
there's this different personhere, but everything about their
life pretty much remains stableand the same, and so that gives
(24:08):
them some peace.
I love this idea.
Jennifer Vincent (24:13):
Yeah, yes, that's one of my goals in my
network is to get that care plandone.
So but yes, they don'tunderstand the change.
And so, again, that goes intobehaviors too, this behavior
maybe they're expressing thisand that could be in your care
notebook just yes, their routine, their likes, their dislikes,
(24:34):
their needs, medications,developing an emergency plan,
like if there's a naturaldisaster where we live.
And so how would the personalnetwork help in that too, that
you could develop a emergencyplan?
And then down the road,long-term goals.
(24:56):
We have to think of where willour kids live when down the road
.
And one thing about that issometimes we just have to break
it down, and the personalnetwork can help you too as you
break it down, because we'realways like, I know, I always
think about the big picture.
I don't know where Alexandra'sgonna go when I'm gone, because
it's like, okay, what happenswhen I'm gone, but you gotta
(25:19):
break it down into little steps,like okay, what supports does
Alexandra need where she lives?
So let's start there.
Versus where's she gonna go?
But you gotta figure out whatsupport she needs before you can
figure out where that place isgonna be.
You know, does that make sense?
So, yeah, so.
Sandy Deppisch (25:40):
And it's not as overwhelming as the parent to
wrap your mind around somethingwhen you can break it into
bite-sized pieces like that,right, right.
Think about the needs first.
Jennifer Vincent (25:49):
Yeah, and for some people, employment, you
know, is something that thenetwork can help with, to
creative thinking,self-determination, you know.
That's another thing for ourkids.
And then, as a network member,in their involvement it's
important to let members know,because all our lives change.
(26:13):
But if a network member needsto leave, that they work on
replacing themselves.
They help, you know.
And another thing, that as agroup you can recruit members,
so like, if you want, you know,your network small I know, sandy
, you have this huge list and Idon't think you're gonna have
any issues but I've worked withsome networks where they're
(26:34):
really there's like, oh, wedon't have anybody to invite and
they're small, but that couldbe a goal to figure out other
people to invite to the network,you know, as a network goal,
like, okay, we increase ournetwork, so let's all get
together and think about otherpeople that we could include.
Okay, that's great.
I'm looking here at my notes tosee if there's anything else I'm
(26:56):
missing.
It's a, it's a.
I feel like it's a lot, butit's really.
It's just such a simple thingand it doesn't cost anything,
you know, and it's just so, andit's just something that we I
don't know why we haven't beendoing it all along, right, right
and you know, and somethingthat I shared recently, is that
oftentimes people want to help.
Sandy Deppisch (27:16):
They don't have a clue how to help and
oftentimes the person who needshelp like in our case, parents
who are overwhelmed with thecare of our children who have
different needs we don't like toask for help, we just assume
the role, which is why, in afamily of two people, one
usually knows it all.
Like you said, your husbandwouldn't know all that.
(27:38):
My husband asked me thismorning where are the Clorox
wipes?
And I was like okay, where doyou think they might be?
You know not to becondescending, but right, right,
that's a little thing you knowwhen we're talking about
complicated issues with ourchildren, right?
So, yeah, I think it's.
It's great to have these groups,because as parents, we don't
(27:58):
like to ask for help, but if welet people know, hey, we would
love your support, they wouldlove nothing more to come
alongside and offer that becausethey want to.
They just don't know how.
So this is just such a greatway to match those two needs the
people who want to support youand you who need support and
just having a facilitator likeyou're the person that comes in
(28:19):
and says, hey, guys, they needsome help.
Here's how we can help them.
It's not really uncomfortablefor us to be doing asking
because you're doing it Exactly.
That's kind of great?
Jennifer Vincent (28:28):
Yeah, it is.
It is because it takes I usedto one of my facilitator peers
to facilitate Alexander'sNetwork for me, which was really
nice to have.
One thing I told her was thereason I feel like I need you is
because all my friends that I'mgoing to invite I'll talk a lot
and to keep them under controland organized, because they're
like I, like Jennifer, we'rejust here to have fun.
(28:51):
It's like, no, we needstructure and I need you to help
with that.
No, but you will be surprised.
And even family members let's behonest because of parents we do
it all and I know for mepersonally, I like to protect
people and I hate to and that'snot the correct word, but
sometimes it protects peoplefrom my child, I mean, because I
(29:13):
don't want them to see her in anegative light either, like
family members and stuff.
So I'm always trying to makeeverybody see only the positive
side of her.
But in your network sometimesyou have to if your kid hits or
pulls hair or bites, or I mean,some of our children have
(29:34):
behaviors and you have to openup and let people know about
that too.
And again I say, behavior isalways communication, that's
another thing to make surepeople understand, but let
people know that sometimes wehave hard days and be vulnerable
, you know, because everybodyhas hard days.
So, I'm just going to share alittle bit on somebody else's
(29:58):
network.
I'm not going to use any names,but there's this network that's
been together for over 12 yearsand for the first three years
they met four times a year andthereafter three times per year.
At the start of the networkmeeting, like we talked about,
they enjoy a pot like meal.
The first few years the networkfocused on learning about the
(30:19):
person that centers, servicesand supports.
After a couple years they,individual network members,
committed themselves to learnmore about specific supports
that that child needed and I saychild but you know I mean all
our children are talking andthen they became experts on that
specific topic specific members.
(30:41):
One year the network, like wetalked about, developed an
emergency action plan so thatthe network members would know
what to do if the parents wereunable to care for him.
So they had a plan on whatwould we do if something
happened.
You know that network developedthat plan Another year.
The network helped the familyprepare for transitioning out of
school life.
(31:01):
See, you and I are there andthat, for me personally, that
was my big thing, like I'm aplanner and it's like, oh my
gosh, my daughter just finishedschool.
She's had an educator in ourhomes and she was two months old
because she was visuallyimpaired.
We've always had a teacher, youknow, besides DCI, we had a
teacher from the school districtin our house, you know.
(31:21):
And now she's 20, going to be22.
And even though I'm okay withthat, it was still like I don't
have a specific plan.
It scares me not to have a plan.
And people are always lookingat me like Jennifer, you know
everything, you do everything.
What's your plan?
What's your plan?
Like don't ask me that, becauseI don't.
I mean, I have ideas, but Idon't have something.
Like, okay, when school startsback in August and other kids
(31:44):
are getting on the school busAlexandra's not getting on that
school bus anymore what do wehave Anything you know written
out Like, what are days going tolook like?
I'm like it's summer, but wealways do summer, so I'm okay
with summer, but I don't havethat figured out.
But I think it's great if youstart when your kids are in
school, like I'm currentlyworking on a network with a nine
(32:06):
year old, which I think is anamazing you know, and for the
family because they growtogether.
Sorry, I get off, but I'm thisone let's see Out of school life
and it says most recently, thenetwork explored creative living
(32:28):
options for this person, andthat's the thing that.
So the network helped explorethat.
And the last 12 years have beena journey for the network.
Over time, members are becomingcloser to each other, more
cohesive and more invested inthe person that centers future.
This is one person's personaljourney with their network.
Sandy Deppisch (32:52):
And that's interesting because they took a
few years just to be educatedExactly.
Jennifer Vincent (32:57):
So that's what you have to remember.
It's not something that youjust rush.
You just like us.
We develop our personalnetworks over time, like you and
I.
I mean, we met each other in amusic together class years ago
and we see each other here andthere, but I feel like recently
we've kind of bonded more.
At least I feel that way.
Sandy Deppisch (33:17):
Absolutely.
Jennifer Vincent (33:18):
And we all end up in different journeys in our
life and people come and go,but same with our kids Like it's
an evolving I mean.
I might own personal supportsand needs change right Over time
and our kids do the same wayand so it's an evolving process
and so and things change.
So what your child needssupport-wise when they're in
elementary is totally differentwhen they're an adult.
Sandy Deppisch (33:42):
So you know.
Jennifer Vincent (33:43):
Exactly.
Sandy Deppisch (33:45):
Yeah, and then let me ask you this.
This just popped in my head.
So assume that a child who isnow a young adult maybe you know
there's a network that's workedwith them for years, it's been
a support system and then thischild, young adult, transitions
into group home living, forexample.
Does the team still meet, or dothey or they?
How does that work?
I never thought about whathappens when there's a big
(34:06):
transition.
Jennifer Vincent (34:08):
Each network is different, obviously.
So it's kind of however youguys do it.
But I can say I'd say yes, youdefinitely.
Because I mean for mepersonally with my daughter I
think she has a lot of medicalneeds and right now I don't see
one person really being able tomanage that if anything happened
to me.
So I see that probably shewould end up in some kind of
(34:29):
medical facility or a group homethat would be able to manage
her needs.
But that was one of my thingswhen I did my invitation meeting
that I told people Like if thathappens, I want her to have
that network to me and supporther and so then they can still
meet with her.
Right, they can pick her up or,you know, go there but and then
(34:49):
figure out how you know theysupport her.
You know whether it be somebodymaking sure, you know, making
sure her personal needs are met.
You know, again, everybody hastheir strengths but I just don't
want her to be.
That's not a end all for her.
It's the placement and thepeople that are there.
So that was one of my, I cansay one of the networks that I
(35:12):
had heard about.
That's been meeting for yearsthe parents, they were trying to
schedule a meeting and theparents were going to be out of
town, so they said that.
So that's, it wasn't a goodtime for them.
So the network met anyway bythemselves with the person at
the center, like they met outparents, and you know how nice
is that that the network was.
So you know, connected thatthey're like we don't need you
(35:34):
guys here to meet, we'll meetwithout you, that's fantastic,
no, and so that's kind of.
You know, it would be nice forour kids, right Like when we're
not able down the road, that thenetwork would maybe meet
without us, cause, you know, wealways feel like we're so
connected with our kids.
But the whole purpose is to getother people to be able to
connect with them.
Sandy Deppisch (35:53):
Yes, Well, so you mentioned that the grant is
going to be ending soon.
Was there a specific deadline?
If people want to do this, tellus a little bit about that.
But then how?
I know you gave the website inthe beginning, but how do they
connect with you or with?
Jennifer Vincent (36:10):
So the best way would be to go through
parent to parent on the TexasNetworks Connection website and
then they could just request afacilitator and if they want
cause, there's otherfacilitators.
I'm not the only one out thereand you know, there's
facilitators all over the stateof Texas.
So, which is great, this is notjust, and you could start a
(36:32):
network without a facilitatoryou know, you start one on your
own.
So just know that.
But so currently I believe thisgrant actually ends in August,
but there may be another grant,so don't think that you know
that you can still you knowinquire about it.
I know that Texas Parent toParent is really good about
working on getting funds fortheir programs, so but at
(36:54):
texasparenttoparentorg TexasNetwork Connections is the
program.
Sandy Deppisch (36:59):
So Okay, that's fantastic.
Yeah, I think this is somethingthat's so invaluable.
You know, for a while, as agroup there are GHFeds, which I
mentioned, I think, in everypodcast, but our GHFeds group
was meeting and we were workingon emergency plans.
You know what happens when wedie and where is all of our
information for banking, and youknow all of those important
(37:20):
things that anybody would needto know, regardless of whether
you have a child with adisability or not.
But having a child with adisability kicks it up 100 fold
because, like you said, theyhave so many support needs that
people don't even know about.
And having a plan in place,having not just the plan here's
(37:40):
the book, here's the numbers,here's the computer links that
you need these are people thatare vested in your child and
know them so well over time thatyou're like you got this, we're
good, you know, and so it's notjust a book, it's a
relationship, and I think that'sthe key.
Jennifer Vincent (37:57):
Exactly.
And then you know all ofeverybody has strengths, and so
that's the thing and abilities,and so people in your network
that care about you guys, I mean, they're gonna be the ones who
say you know what, I'm good atthis, I can take this part,
cause our kids really.
It does take a village, right,and that's the whole point.
It takes a village and as weget older, I think you know we
(38:18):
get tired too, and so it's justnice to have that sense of
relief, like okay for mepersonally that I've set up
something for my daughter,because I feel like I am not
doing her justice.
If I am the only one that knowshow to care for her, knows how
she communicates, and I'm notsetting up a quality support
(38:41):
system for her, I'm not doingher justice.
So it's such a relief to knowthat you know and people, like
you said, people want to helpbut they just don't know how and
talk about family members andstuff too.
So over the years, you know yougo to family events and stuff
and you see each other and a lotof times it's like do you want
to spend an hour talking?
(39:03):
You know, and they're like, howare you doing?
You're just saying oh, we'regood, we're doing this, we're
doing this.
But do they really want to hearover Christmas holiday how
you've been to the cardiologist,how you've been on the phone
for hours with Medicaid?
We don't share that informationbecause they don't understand
it.
They don't want to hear it.
But if you invite family I feellike family members in your
network this is a place to sharethat, because you've got the
(39:24):
structure where they're like wow, we did you know.
Even I know my own family.
They have no idea what I reallygo through.
I think it's because we don'twant to burden them with that.
But when you're developing yournetwork, you're not putting a
burden on somebody.
Sandy Deppisch (39:39):
You're sharing information in a structured
setting and I think that's agreat way to share what we go
through too, versus you know,and mentioning burden being a
burden, you know, oftentimessiblings of the individual with
a disability, whether it'sspoken or unspoken, might feel
what is going to happen whensomething happens to my parents.
(40:01):
Oh my goodness, what am I goingto do?
You're taking that off of theirshoulders so that they are
aware.
Hey, look at it's, it's avillage that's going to be
supporting.
It's not just on your shoulders, you know, and I think that's a
big help.
And something else I wanted tomention which is going to be
integral in our case we have alot of family that's out of
state.
Zoom, they can zoom in on thesemeetings so they don't have to
(40:24):
be there in person, right?
Jennifer Vincent (40:25):
Yeah, so I've conducted meetings in several
formats but One.
Sometimes you could just dozoom, like with the pandemic.
You know, some networks wereformed just on zoom.
Ideally in person is alwaysbetter, right, but I just did
one the other night and it washybrid one siblings in Colorado
and other siblings in Florida,and then the other family was
(40:47):
there, and so I mean the hybridworks so well.
And you know, even me personally, once I started my invitation
meeting, I was like okay, well,should I make this person out of
state?
I was like no, but since then Ihave a friend of mine that I
went to school with, that livesin South Carolina.
She, she, she was in town whenwe did Alexandra's first meeting
(41:10):
.
So I was like you know what,let me see if she wants to come,
like she didn't come to theinvitation meeting but our and
so just like yes, and so nowshe's joining us on zoom.
And then I realized the otherday, just the other day, I was
you know, you start processingpeople that you can add so and
and I was like Alexandra had anattendant that loves her and
connected with her right, and soshe went into the Navy, she
(41:33):
worked for us when she was 18 inhigh school and now she's in
her 20s and she's in the Navyand she's stationed in
California and but when shecomes home she's still visit.
She was the first person evertook Alexander to the movies by
herself and I was like, what youwant to take my kid?
And I remember her coming homeone holiday when she was living
in Austin with a boyfriend andtook on Christmas Day, took
Alexandra to see Alvin in theshipmikes, like oh, and I was
(41:56):
like, and she was a talk aboutsibling.
She was on the swim team withmy older daughter and that's how
we met her and so your,honestly, that have become
connect.
You know, think about supportsystem to the friends that have
been in their lives, but they'renot only gonna be supporting
Josiah, they're gonna besupporting their friend right,
(42:17):
Right yeah as a support system.
So that's why I say just thinkoutside the box.
So I thought you know what I'mgonna.
We were just Texan, because shewas like, oh, I'm stationed in
California for the next fiveyears or something.
And I said and I Said, oh,we're gonna have to make a trip
and come out there and see youand San Diego.
And then I said you know what?
And I thought you know, I'mgonna invite her because she can
(42:38):
join on zoom, right.
So I was like I would love tobe a part of Alexandra's network
, you know.
And I thought, because shealways got, you know, some
people just naturally get ourkids and and connect with them
and she was one of those peoplethat did.
And so now, even though Ididn't invite her to the first
meeting, invitation me.
I have invited her now andshe's gonna join in our first
(43:03):
meeting or our second, thirdmeeting in August and on zoom.
So, yes, zoom works really welland even though you think, how
can people support you whenthey're on, you know, in another
state?
But sometimes it's just theknowledge, right, sharing and
down the road.
You talked about siblings.
You don't want it, you're alljust.
(43:24):
You know, like I know, you haveseveral kids right, and I have
three and but you don't want itto just be like, okay, who's
gonna do what like the same, butagain they get that educational
piece and then they can decide.
You know what I can do this?
Because they're learning right,even though they see it, but
they see it from the sidelinesand then they also see they can
(43:44):
get support.
Sandy Deppisch (43:45):
So they're not alone and you know.
Jennifer Vincent (43:48):
If you guys do become where you're not able to
care and even now and day today, like how can they support
their brother, how can theysupport their parents?
But how people support them asa sibling to our children, so I
mean it's a, it's a.
It is a huge relief for thembecause I know, as parents, we
don't want yeah, we don't wantto put a burden on our other
(44:10):
children and we don't want themto feel like they don't have a
choice.
Right, want them to know thatthey're supported as well.
So it's not just about thechild and the parents, but it's
also about the siblings, so theentire family.
Sandy Deppisch (44:22):
Yeah, that's amazing.
This is just such an incredibleidea.
I'm so glad that they startedthis in Canada and it's worked
its way here and and that you'renow doing this, because I think
every single person who hearsthis In some way or another, if
you have a loved one that hassupport needs, you need to reach
out and get this processstarted.
It's just gonna make a wholehuge difference in your life and
(44:46):
you make the whole process soeasy Jennifer too.
So.
Jennifer Vincent (44:50):
Yeah.
Sandy Deppisch (44:50):
I mean so far.
We've only been in thebeginning stages.
We haven't had our firstmeeting yet, but but I'm looking
forward to it.
Jennifer Vincent (44:56):
I have to say I just did one couple of nights
ago and the mom had Emails orcalled me the week, a lot the
week before, and she's likeJennifer, I hate to tell you
this, I got some bad news andshe's like I just don't think I
can do it.
You know, like she, just she'slike you just don't understand
my family.
They just don't want to helpand they don't understand and
(45:17):
they don't and I, you know, Imean I hate to say I co-hurried,
but I convinced her.
I was like I promise it will beokay, just, yeah, it's going,
I'm gonna do all that and thenif it doesn't work, you don't
have to.
And then she called me, youknow, the next morning not
yesterday at, because themeeting was Wednesday after, and
she's like this was sowonderful, my kids were, they're
(45:38):
eager, my sons alreadydeveloped this communication
tool for the group and my otherones already named it.
This was just the invitationmeeting.
And then my in-laws were justlike, you know, she's like and I
, and she said I feel such arelief now, right, oh, and so,
and that was just the invitationmeeting.
We, you know so, and I was like, yeah, because sometimes the
(45:59):
invitation is the hardest part,I will say, because it's like
I'm asking people for somethingyeah, like we talked about, and
so it does help to have thatfacilitator there to To do that
for you, so you don't have tofeel that as a parrot, because
it's hard.
Sandy Deppisch (46:14):
Yeah, yeah, definitely, oh.
This is just so amazing, soexcited that you came on and
shared this with us, and ifpeople need to reach out to you,
we'll put your contactinformation Absolutely notes as
well.
Jennifer Vincent (46:26):
Yeah, they can always email me my personal
email as well, and.
But yes, I just want people toknow I'm not the only
facilitator out there, so theydon't have to like you know and
and that that they can't reachout if they would like somebody
you know Different well, anotherthought just popped in my head.
Sandy Deppisch (46:41):
So we're talking about Texas.
Other people might not be inTexas.
Do they have something similarin other states that you're
aware of?
Jennifer Vincent (46:47):
I don't believe so, because it was a
couple of parents that found outabout this program and and
Canada, and they said you knowwhat?
We've got to bring this here.
Sandy Deppisch (46:57):
So, jennifer, I'm envisioning some travel for
you and I, so I'm gonna be along, I'll be the person that
facilitates the travel for youand you be the person just to
get this going in other states.
Jennifer Vincent (47:10):
I know, I know it is.
I mean I when I, when I firstheard about it years ago and now
that I'm started it, I mean I'mjust, I'm passionate about it.
You know, I mean I just becauseI know for me personally and
for other families that I seeall you know so often that just
feel so alone and isolated.
You don't have to be, you know.
I facilitated another one andthe the mom was like I don't
(47:33):
think anybody's gonna come.
She had a huge.
She had people on zoom Locallyeven that just couldn't attend
in person.
She had people from out ofstate.
She invited people from thelocal library Thanks for
daughter to the library, big forherself, for book club and
(47:53):
craft, so she can get out.
And her daughter has adisability and she takes her and
so I told her you know and, butthink outside, like we talked
about your neighbors and right,and Think outside the box.
So she's like you know, wetalked to these people and when
I went, if I don't bring mydaughter to the library with me,
they're like well, where's yourdaughter?
And you know they seem toreally good.
So she and two people from thelibrary came to her meeting and
(48:17):
they were just you know, and andthen she said there was an
attorney there and she said Iasked him.
He was a younger guy and hecomes to book club or whatever.
And so he said well, I don'tknow if I'm gonna failed attend
the meeting or join the network,but I'll tell you what if you
ever need an attorney, if you oryour daughter ever.
(48:39):
No, if your daughter, who has asignificant disability right,
ever ends up in trouble with thelaw or gets arrested, call me.
Here's my business card, so younever know what connections
you're gonna get reaching outlike.
Sandy Deppisch (48:54):
That's so great network.
Jennifer Vincent (48:55):
He offers legal services if she ever got
Trouble.
Sandy Deppisch (49:00):
That is awesome.
Well, I'm so grateful thatyou're here today and I think,
like I said, sharing thisinformation, getting it out so
that people know this isavailable as something that is
gonna make a difference for alot, a lot of folks.
So, thank you so much, jennifer, andy and we'll we'll have you
back again next time youdiscover another new amazing
(49:20):
thing.
Jennifer Vincent (49:21):
Absolutely.
Hey, I did want to say I justyou know, you know, you know I'm
crazy, but I did just recentlybecome trained for tag
Facilitation.
Which is what is that?
I'll be brief it's transitionaction groups.
Okay, I know.
So that that's a whole, notherwhole another podcast, but wait,
(49:41):
wait.
Sandy Deppisch (49:42):
Already started teasing us, so tell us what that
is.
Jennifer Vincent (49:45):
A transition action group is where you get
and you know, again, people canstart on their own a group of
parents I say parents or people,get together because they have
goals, whether common goals orthey could even be different
goals of things that they needto work on.
So and I and again I have togive a plug the Texas
parent-to-parent they have agreat transition inventory tool
(50:07):
when you can go through becausetransition is big right, we
talked about Bridget and toschool, to arts, to adulthood,
to all the things that you need,and I mean I just love that
tool.
But I know, personally, I havegoals, you know I have this huge
list, but you, you develop, youget in a group and you could do
in person or on zoom again, andyou Go through your transition
(50:29):
inventory of things that youneed to work on and then you,
you create a goal and then, andthe thing is that you accomplish
that goal.
So that's where the actioncomes in.
So it's a tradition actiongroup.
So, like in, you meet, let'ssay, just three or four meetings
over six months, are you don't?
It's not like you're not like apersonal network where it's a
(50:50):
growing thing for years, becausethe whole purpose is to figure
out what you need to get doneand encourage each other and
support each other and and andGet your goals done.
You know, so we'll be starting awill, I'm getting guardianship,
and then again it's one ofthose things where you break it
down in steps.
Okay, so you break it down insteps where you say you know
(51:13):
what's step one making the phonecall right.
It could be as simple as I knowI need to get on the interest
list for these Medicaid waiversand I haven't done it.
You know right step one.
You know right you, you breakdown your goals and steps and
then so you're gonna meet andyou're gonna go through your
transition inventory, you'regonna set a goal and then you're
(51:33):
gonna say, okay, I'm gonna dothis portion of my goal before
the next meeting.
And then I think I always thinkof personal networks and
Transition action groups, justthings it helps with account of,
like my own accountability.
Sure, you have a deadline tohave a deadline and then you
know You're gonna meet and thenyou talk about where you're at
and how you met that goal andthen you break.
(51:54):
You know you can break it downagain the next month, like, okay
, now I need to do step two andthen your group meets and you
and you support each other andyou can also, you know you talk
about how we're supportive.
Some of us don't want people togive us advice.
That's not supportive, right,you know?
Or some people do.
Some people feel supported ifthey get like oh, you're doing a
great job and some people don'tlike that.
(52:15):
So you kind of, you kind ofalso you address, like those
things.
So it's not really a supportgroup because it's an action.
You're there to get things done.
But again, it's anotherwonderful tool to use for us
parents to help our children,and that's what I'm always
looking for to make life betterfor my daughter and, you know,
other individuals withdisabilities and for ourselves
(52:37):
as parents like, so we don'tfeel so much stress on.
Yes, I don't know who's Sandy.
But now it's like for mepersonally, like okay, alexandra
finished school.
I thought I'm gonna deadline,like you know.
Sandy Deppisch (52:51):
I know I always think like the windows closing.
I have to.
Jennifer Vincent (52:57):
How did I spend 21 years and I'm not done
right?
Sandy Deppisch (53:00):
It's never ending.
But you know, speaking ofstress, this is why those of you
that are listening, you can'tsee this, but Jennifer and I
both have on backgrounds wherewe're at the beach with a palm
tree behind us and the waves,and the whole time I'm recording
this, I'm just looking at thosewaves like this is the most
peaceful way to do a podcast.
I love it.
Yes, thank you again, jennifer.
(53:22):
I love everything you sharedwith us and I look forward to
having you back again soon.
Thanks for listening to theembrace the blessing podcast.
Visit embrace the blessing commSlash podcast for show notes
and links to any resourcesmentioned.
If this has been beneficial toyou, please share it with a
friend or post it on your socialmedia pages.
Join me next Wednesday for moreinspiring stories from people
(53:45):
just like you.
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