Janice Fialka and Richard Feldman discuss Micah's upcoming book, helping families develop their stories, the importance of revisiting-reflecting-reigniting, thinking "outside the box", turnover in support teams, interdependence as the goal, the profound effect of true inclusion on society, and much more. Their wisdom, advice, and stories have golden nuggets for parents of younger children as well as adults with disabilities, and of course community allies.
Though they both say they are retired, Janice and Richard continue to be sought after presenters and public speakers on issues relating to disability, inclusion, building community, advocacy, and more. Janice is also the author of four books, and a poet.
Richard and Janice are the proud parents of Micah Fialka-Feldman, one of the stars of the acclaimed film, "Intelligent Lives". Micah has an intellectual disability.
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Episode Transcript
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Greta Harrison (00:00):
Hello, my name is Greta Harrison. Welcome to
born fabulous podcast seasonthree, Episode 11. The theme of
this season is young adults withintellectual disabilities living
full lives of independence andinterdependence. You will hear
interviews with parents supportstaff and of course the young
adults with intellectualdisabilities. Please note these
(00:20):
interviews were done one to twoyears ago. achieving
independence is a complexjourney for many individuals and
families. There were many stopsand starts with various entities
when putting together seasonthree. Regardless, this content
is very relevant and we hope youwill find it helpful. This
episode is the third of fiveparts with Janice Valka and
(00:41):
Richard Feldman. Though theyboth say they are retired,
Janice and Richard continued tobe sought after presenters and
speakers on issues relating todisability, inclusion, building
community, advocacy, and more.
Janice is also the author offour books and a poet. Richard
and Janice are the parents ofmica Fialkov Feldman, one of the
stars of the film intelligentlives. Micah has an intellectual
(01:04):
disability. It was a real treatto have this in depth discussion
with both Janice and rich. Now,please enjoy this short clip of
love as a potion. The lyrics areby Melissa regio, a young lady
who had Down syndrome and wasthe focus of episodes one
through four and season one. Themusic and voice are by Rachel
fuller.
Rachel Fuller (01:48):
Love is all around?
Greta Harrison (02:09):
I wanted to ask you about Mike this book. I know
he's got a book coming out soon.
It was supposed to come outduring the pandemic, it hasn't
come out yet. Can you tell usanything about that book.
Janice Fialka (02:23):
Um, not a whole lot. Except that he's very
excited and proud. And he'sworking hard with co author to
tell his story. And we feelvery, I guess, grateful and
respectful that he has thisopportunity to share his story
(02:48):
because one is we all want anaudience, even if it's just our
next door neighbor, or spouse orfriend, who says Tell me more.
What else I want to know, I wantto see you or hear you or
whatever it might be. So just ina general sense, those are a few
(03:08):
comments that I would say we'retrying to have. The
Richard Feldman (03:11):
woman who's doing it with him is a woman who
did her dissertation on Mica.
And she met with him regularlyfor an extended period of time
for an extended multi multimulti 100 Page dissertation. We
never talked with her duringthat entire period. And it's an
amazing piece of his earlyhistory and questions about his
(03:35):
life in his dreams and his hopesand his relationships. So now,
he's much more mature and much.
And she is also much older too.
And both of them are reallyhaving conversations with the
folks from inclusion pressbecause that's who has said they
are, you know, tentativelycommitted to publishing it. And
(03:57):
so I think Jack will definitelybe nudging them to ask deeper
and deeper questions, and we'llsee where it goes. We've had a
few phone calls with her and himbut they really continuing to
reevaluate how they do it. Andthe effective COVID effective
college because his story otherthan Janice's book is not told
(04:21):
in his words through where he'swritten some articles. With that
without and this will be anopportunity that will trace it
for the last 10 years as well,which is really a very
significant 10 years in hislife.
Janice Fialka (04:41):
But since you asked that question, Greta, I
want to emphasize too. Inaddition to what Richie had just
said about the book and the coauthoring that everyone's story
is important and I hope thatyour listeners are aware that
they as family members orsiblings or as people with
(05:02):
disabilities, they have a storythat's important to share. One
of my favorite quotes comes fromthe author, Christine Baldwin,
who says, words are how we thinkstories are how we link, how we
connect with each other. And Ithink that's a lot of there's a
(05:23):
lot of truth to that. So thatwhen someone hears not just mica
stories, but I mean, in manyways, that's what you're doing.
Greta in such beautifulimportant ways, is giving a
forum for people to share,because then it clicks with
other people, Oh, I could dothat, or that gives me the
power. So just wanted toemphasize that aspect.
Richard Feldman (05:46):
We had the opportunity to do a family
workshop with a group offamilies in Pennsylvania. And
the model of the conversationwas to develop PowerPoints for
each of the young people thatwere there. And during that
process,
Janice Fialka (06:08):
the PowerPoints were all about me telling my
story,
Greta Harrison (06:12):
for each self advocate.
Richard Feldman (06:15):
And in the process of doing it, the parents
and each of the other familiesbegan to learn a great deal
about telling the story. Andthat was, that was one of the
most inspiring things I had everseen, because he saw everyone
come alive, in terms of they'resharing their story publicly,
because what has been a privateconversation became a public
(06:38):
conversation.
Janice Fialka (06:40):
You know, we're really going off on this. But
what I'm remembering too, wasthat one of the young people who
was maybe about 18, a wonderfulmusician, was not verbal. And
his story through PowerPoint wasdeveloped in, you know, with his
(07:00):
family and with the supportstaff. And when he went to show
it, he didn't use words, heactually stayed in the back of
the room sort of hid behind achair, because he was most
comfortable there. And he pushedthe button. And there was his
story on the screen. Right? Sothere's again, we're always
(07:21):
reminded of there's so many waysto be in the world. So yeah,
stories are powerful.
Greta Harrison (07:28):
I love that when you had that experience with
these families about how manyfamilies were there,
Janice Fialka (07:34):
but eight families? I think
Greta Harrison (07:37):
that's a great idea. And that's an idea that
maybe some listeners could do.
Janice Fialka (07:42):
Oh, absolutely.
We did a Friday night, Saturday,and then a Sunday morning. And
we you know, did a lot ofstorytelling, and then they
develop theirs on their own.
And, you know, we all of asudden decided because you know
how movement is important, youknow, when you're talking and
being together. And so we didthe Hokey Pokey just the end of
(08:07):
it. Because you put your wholeself in, you put your whole self
out, you put your whole self inand shake it all about. And
that's what it's all about. Andthat it really became sort of a
theme, you know, we putourselves in when we want to
connect with people. And then wealso have the opportunity or the
(08:28):
need to pull back as well, thatrib. So yeah, it's it is I think
retreats bringing familiestogether is can be very
empowering.
Greta Harrison (08:37):
I love that was the goal of that retreat coming
up with Person Centered planswas that the goal? What was the
goal,
Janice Fialka (08:45):
really to strengthen their relationship
because they were all peoplethat had families that had one
person with a disability,usually young person or on 18 to
26. And also to is Ritchiealways eloquently says to break
the silence, to talk about thejoys and the struggles and to
(09:08):
feel a connection with eachother. And I think but I think a
lot more of it was knowing yourstory and developing your story
and feeling a connection witheach other. Does that sound
right?
Richard Feldman (09:22):
Yeah. And our daughter Emma was there and was
very significant in helping tofacilitate the PowerPoints and
the templates and moving us allaround. So that helped a lot for
folks that and Janice obviouslydoes a lot of PowerPoint, but it
was a you know a group situationand a teaching situation. And
it's really the movement of iTwo we it's really what any of
(09:45):
us who were part of the women'smovement knows that it was the
consciousness raising and theconversation that broke the
silence of thinking you're alonein this either terrible world
that has such injustice is or aAround pain from the realities
in which we, we have to workwith to turn them into joys and
(10:10):
turn turn them into somethingpositive
Greta Harrison (10:14):
to turn them into we what we working towards
helping create the world we wantto see. Correct? Absolutely.
Absolutely. I love that. That'sthank you for sharing that
because I think that's a greatidea. Are there any other out of
the box ideas, since youmentioned that that that you all
have done with families or Iknow that we've already talked
(10:37):
about in season two, when Ispoke with mica, I can't
remember if we've spoken aboutit in our interviews so far. But
we did discuss how mica came tokind of a stalling point with
his circles of support. And thenyou shook it up. And you brought
in this facilitator and youguys, I have if anybody wants to
(10:58):
see if you go to bornfabulous.com and look on season
two on Mike his page, I have apicture of this beautiful plan
that they drew out for Mike itwell, it's a it's like his
journey of his life, really. Andyou had this amazing session
where you had, like 3035 people,some many in person, some on
(11:21):
computer via zoom, and you hadthis facilitator and that you
shook it out of the box toreinvigorate a circle of
support. Right. Yeah,
Janice Fialka (11:30):
I mean, what you remind us of is how important it
is to revisit and to readconversation. Never use that
word, but to reflect, to thinkabout because no relationship,
at least that I know, stays at,you know, an even keel and drops
off. Everybody has their ownlives. And so we need to come
(11:54):
together. I mean, and andintentionally talk about what's
working, and what are the gaps.
And Micah had a sense thatthings weren't, weren't working
as well. I mean, it you know, hethought about it, maybe I need
to move back to, you know, ourhome Detroit area. But it became
clear that there was more to it.
(12:14):
So that has to I mean, we'reback to that place, again, where
we're meeting with Micah witheach of the individual support
staff to talk about how arethings going is how, you know,
support staff needs to also findjoy, and fulfillment, if you
(12:35):
will, in that relationship. Sofor example, one of the support
staff, loved going to thevolleyball games at the
university, and didn't have alot of people to go to a lot of
people weren't interested. Butshe asked Mica. So mica said,
Yeah, I don't know much aboutit. But he went, and so it's,
it's that reciprocity, it's notnone of this is, you know, Greta
(12:59):
is one way. So anybody whothinks that they can pull
together the circle of support,even if it's large, or just a
couple people, and think thatit's going to glide off it, you
know, it won't, it just doesn't.
And so I think that is areminder to all of us to come
back and reflect and reignite. Ithink
Richard Feldman (13:24):
part of the challenge of family is to
constantly support the expansionof the relationships that our
children have, or young adultshave. And they're doing it
themselves, and they're goingthrough changes. So it's this
(13:45):
constant changing relationshipbetween where Michael lives and
what to eat with whom he isliving with in his community. So
there's re assertion and reimagination of the circle for
priek. Right before COVID wasreally an expression of Mike,
almost seven years older thanwhen he started his circles in
(14:09):
Syracuse, and more that he nowknows many more people in the
community than just theuniversity folks. So his center
of relationships was changing.
So he was he felt that, and thatwas really the the inspiration
and the challenge to us to workwith Michael to bring together a
facilitator to do a personcentered planning, and the
(14:31):
mapping you're talking about.
Yeah.
Janice Fialka (14:34):
And you know, we were always sort of I bet other
parents can relate to this, likeon the search for who can we
pull in to, you know, engagingwith our son or daughter, you
know, what connections can wemake? And I'll just very quickly
tell you, I remember we were inHawaii, and we had presented and
(14:56):
a mother came up and was talkingto us and she said, Oh, I My
sister in Syracuse, she's adultsand has kids and she likes to do
a lot of volunteer work. Andshe, she, she works at a soup
kitchen or something like that.
So I'm going, how do I connectthis woman to Micah, who's in
Syracuse, while I'm talking toher sister in Hawaii, you know.
(15:16):
And so, I think that isn'talways easy for any of us. You
know, we tend to be a little bitmore out outward in our
relationships. But I do thinkthat as I said earlier, the
intentionality of invitingpeople in in lots folks aren't
going to come. But you know, mygoal is one out of 20 have this
(15:39):
incredible opportunity to meetsomeone new and do you know,
learn something about themselvesas well as the other person?
That
Greta Harrison (15:51):
is so true, you always have to be thinking
outside the box. And the wheelsalways have to be spinning,
don't they? Yeah.
Janice Fialka (15:57):
You know, I remember when Mike learned that
phrase, out of the box thinkingthis was when he was in high
school. And when in he wasintrigued by it, you know? And
when he would meet people, he'dsay, hi, you know, I'm like, and
are you one of those people thatthink inside or outside of the
box?
Greta Harrison (16:17):
He would ask him right off the bat. Right. Yeah.
I love that. Yeah. Right to thepoint. That's great. That's,
that's I love that the rawhonesty there. Let's get to the
let's get to the point there.
Yeah. I wish I could do that.
Unknown (16:38):
Practice.
Greta Harrison (16:41):
All right. So now, we've talked about Mike his
living situation. And I knowthat he has a support team, does
he have an actual roommate? Oris it more of a support team?
And the reason I ask is one ofthe issues that a lot of
families have is, and selfadvocates, I know and just
(17:03):
always say families is theconstant turnover in support
teams sometimes. So can youaddress that with your
experience?
Janice Fialka (17:14):
Well, you've named it, it is an it is a
reality. I guess sometimes I'dsay it's an issue. Sometimes
it's a gift. Mica has currentlya wonderful roommate, who is a
med student, and he was Mike,his roommate a couple years ago,
(17:35):
and now is currently hisroommate, but he too will be
leaving. So each, each session,if you will, has been about a
year. That is a person whoreceives some compensation for,
you know, light engagement, ifyou will, more natural supports,
I guess you could call it. Sohis rent is, is covered. And
(17:57):
then he hangs out to mica theyjust went to the store together
and do some shopping once inthey usually have dinner
together watch TV or unwind inthe end of the day. So that is
an issue is this and Michael? Idon't you know, I think he's
comfortable. If we share that,you know, that's a frustrating
(18:19):
point for him. He knows thatalmost every year, someone new
will come along because many ofthem are students. And so they
they do move on. So I'll letRichie talk about our hope is a
design for maybe dealing withsome of that.
Richard Feldman (18:37):
Remote, always reminded of Judith snow from the
inclusion folks in Canada, whowas the first person to have the
money, follow her and let her befreed from the institutions in
Canada, and one of our mentors.
And she had over 600 stafffolks. And people that worked
for and with her over herlifetime and outlived many, many
(19:02):
expectations of her and I saythat because I think one of the
most painful things is roommatesand changing staff. And you
know, with the roommate, it'she's had roommates that have
been, you know, have not beengood at all. Not responsive, not
(19:22):
not, not harmful, but just notgood, you know, not engaging and
so forth. And unfortunately,that's part of inclusion and
living to learn how to deal withroommates. I mean, we've all had
roommates that are not so good.
Whether they college or aftercollege or you know, so So
(19:47):
that's unfortunately part of it,it hurts to see. Finding a long
term roommate is an interestingchallenge. I don't know how that
emerges, really but so What wedecided to do was, and I think
we might have shared some ofthis is purchase a duplex in
(20:08):
upstairs and downstairsapartment in Syracuse. And the
hope is that he has a roommatethat he selects as he currently
does now. But then thedownstairs rather than just
renting to students rent topeople who have some care or
concern and wanting some levelof relationship with Micah. So
(20:32):
it enlarges is intentionalcommunity, beyond his roommate
and beyond, different from hiscircle and different from the
neighborhood, in different fromhis staff. So it adds another
aspect to relationship to wherehe, you know, he knows the
people that care about him, youcan go down there, his roommates
(20:53):
not there for a weekend or aweek, he's got some people he's
friendly with, and may havedinners, you know, here and
there with them and stuff likethat, you know, plant the garden
together outside, who knows? And
Janice Fialka (21:06):
I, you know, I think the reality is, it's easy
for me to say this, it's not howI necessarily feel in the middle
of the night, is that as familymembers, or friends that I want
to be there for my kid tovalidate those feelings of
sadness and frustration, youknow, I, there is no magic one.
(21:29):
I mean, it may be the realityfor a while longer than he
wants, or we want for him. Thatthere is that, you know, every
year sort of changing. And so wehave to make sure that we, I
believe, give him theopportunity to talk about that.
And also to point out how he'sgotten, you know, in a sense
(21:52):
better at identifying what hewants in a roommate. And so when
one situation didn't work out,well, he reached out to other
people and said, Who else hashad problems with roommates? And
how did you deal with it? Sothat's an issue that he could
take back to the circle offriends. So I can't make all
(22:12):
those things better. Oh, boy, doI wish that I could. What I
have, what I think I'm requiredor want to do is be able to be
there for him to acknowledge it.
And then to find the next stepsthat allow him to continue to
feel some good and good abouthis life.
Greta Harrison (22:30):
Thank you for listening to Episode 11 of
boring, fabulous podcasts thirdseason. I hope you enjoyed it
and want to hear more. Someshort video clips from most
episodes are available on ourYouTube channel and unborn
fabulous podcast.com. In Episode12, Janus enriched we'll discuss
interdependence, differentgenerational senses of security,
(22:53):
the positive effects ofindependence, interdependence,
the true meaning of inclusion,mica, Sister Emma and the
importance of siblingsperspective and more. Please
follow on like us on Facebook,Instagram and Twitter. If you
enjoyed this episode, I'd behonored if you would leave a
review wherever you heard thispodcast. Now please enjoy this
(23:13):
clip of love as a potion. Thelyrics are by Melissa regio, a
young lady who had Down syndromeand was the focus of episodes
one through four and season one.
The music and voice are byRachel fuller
Hello, my name is Greta Harrison. Welcome to
born fabulous podcast seasonthree, Episode 11. The theme of
this season is young adults withintellectual disabilities living
full lives of independence andinterdependence. You will hear
interviews with parents supportstaff and of course the young
adults with intellectualdisabilities. Please note these
(00:20):
interviews were done one to twoyears ago. achieving
independence is a complexjourney for many individuals and
families. There were many stopsand starts with various entities
when putting together seasonthree. Regardless, this content
is very relevant and we hope youwill find it helpful. This
episode is the third of fiveparts with Janice Valka and
(00:41):
Richard Feldman. Though theyboth say they are retired,
Janice and Richard continued tobe sought after presenters and
speakers on issues relating todisability, inclusion, building
community, advocacy, and more.
Janice is also the author offour books and a poet. Richard
and Janice are the parents ofmica Fialkov Feldman, one of the
stars of the film intelligentlives. Micah has an intellectual
(01:04):
disability. It was a real treatto have this in depth discussion
with both Janice and rich. Now,please enjoy this short clip of
love as a potion. The lyrics areby Melissa regio, a young lady
who had Down syndrome and wasthe focus of episodes one
through four and season one. Themusic and voice are by Rachel
fuller.
Rachel Fuller (01:48):
Love is all around?
Greta Harrison (02:09):
I wanted to ask you about Mike this book. I know
he's got a book coming out soon.
It was supposed to come outduring the pandemic, it hasn't
come out yet. Can you tell usanything about that book.
Janice Fialka (02:23):
Um, not a whole lot. Except that he's very
excited and proud. And he'sworking hard with co author to
tell his story. And we feelvery, I guess, grateful and
respectful that he has thisopportunity to share his story
(02:48):
because one is we all want anaudience, even if it's just our
next door neighbor, or spouse orfriend, who says Tell me more.
What else I want to know, I wantto see you or hear you or
whatever it might be. So just ina general sense, those are a few
(03:08):
comments that I would say we'retrying to have. The
Richard Feldman (03:11):
woman who's doing it with him is a woman who
did her dissertation on Mica.
And she met with him regularlyfor an extended period of time
for an extended multi multimulti 100 Page dissertation. We
never talked with her duringthat entire period. And it's an
amazing piece of his earlyhistory and questions about his
(03:35):
life in his dreams and his hopesand his relationships. So now,
he's much more mature and much.
And she is also much older too.
And both of them are reallyhaving conversations with the
folks from inclusion pressbecause that's who has said they
are, you know, tentativelycommitted to publishing it. And
(03:57):
so I think Jack will definitelybe nudging them to ask deeper
and deeper questions, and we'llsee where it goes. We've had a
few phone calls with her and himbut they really continuing to
reevaluate how they do it. Andthe effective COVID effective
college because his story otherthan Janice's book is not told
(04:21):
in his words through where he'swritten some articles. With that
without and this will be anopportunity that will trace it
for the last 10 years as well,which is really a very
significant 10 years in hislife.
Janice Fialka (04:41):
But since you asked that question, Greta, I
want to emphasize too. Inaddition to what Richie had just
said about the book and the coauthoring that everyone's story
is important and I hope thatyour listeners are aware that
they as family members orsiblings or as people with
(05:02):
disabilities, they have a storythat's important to share. One
of my favorite quotes comes fromthe author, Christine Baldwin,
who says, words are how we thinkstories are how we link, how we
connect with each other. And Ithink that's a lot of there's a
(05:23):
lot of truth to that. So thatwhen someone hears not just mica
stories, but I mean, in manyways, that's what you're doing.
Greta in such beautifulimportant ways, is giving a
forum for people to share,because then it clicks with
other people, Oh, I could dothat, or that gives me the
power. So just wanted toemphasize that aspect.
Richard Feldman (05:46):
We had the opportunity to do a family
workshop with a group offamilies in Pennsylvania. And
the model of the conversationwas to develop PowerPoints for
each of the young people thatwere there. And during that
process,
Janice Fialka (06:08):
the PowerPoints were all about me telling my
story,
Greta Harrison (06:12):
for each self advocate.
Richard Feldman (06:15):
And in the process of doing it, the parents
and each of the other familiesbegan to learn a great deal
about telling the story. Andthat was, that was one of the
most inspiring things I had everseen, because he saw everyone
come alive, in terms of they'resharing their story publicly,
because what has been a privateconversation became a public
(06:38):
conversation.
Janice Fialka (06:40):
You know, we're really going off on this. But
what I'm remembering too, wasthat one of the young people who
was maybe about 18, a wonderfulmusician, was not verbal. And
his story through PowerPoint wasdeveloped in, you know, with his
(07:00):
family and with the supportstaff. And when he went to show
it, he didn't use words, heactually stayed in the back of
the room sort of hid behind achair, because he was most
comfortable there. And he pushedthe button. And there was his
story on the screen. Right? Sothere's again, we're always
(07:21):
reminded of there's so many waysto be in the world. So yeah,
stories are powerful.
Greta Harrison (07:28):
I love that when you had that experience with
these families about how manyfamilies were there,
Janice Fialka (07:34):
but eight families? I think
Greta Harrison (07:37):
that's a great idea. And that's an idea that
maybe some listeners could do.
Janice Fialka (07:42):
Oh, absolutely.
We did a Friday night, Saturday,and then a Sunday morning. And
we you know, did a lot ofstorytelling, and then they
develop theirs on their own.
And, you know, we all of asudden decided because you know
how movement is important, youknow, when you're talking and
being together. And so we didthe Hokey Pokey just the end of
(08:07):
it. Because you put your wholeself in, you put your whole self
out, you put your whole self inand shake it all about. And
that's what it's all about. Andthat it really became sort of a
theme, you know, we putourselves in when we want to
connect with people. And then wealso have the opportunity or the
(08:28):
need to pull back as well, thatrib. So yeah, it's it is I think
retreats bringing familiestogether is can be very
empowering.
Greta Harrison (08:37):
I love that was the goal of that retreat coming
up with Person Centered planswas that the goal? What was the
goal,
Janice Fialka (08:45):
really to strengthen their relationship
because they were all peoplethat had families that had one
person with a disability,usually young person or on 18 to
26. And also to is Ritchiealways eloquently says to break
the silence, to talk about thejoys and the struggles and to
(09:08):
feel a connection with eachother. And I think but I think a
lot more of it was knowing yourstory and developing your story
and feeling a connection witheach other. Does that sound
right?
Richard Feldman (09:22):
Yeah. And our daughter Emma was there and was
very significant in helping tofacilitate the PowerPoints and
the templates and moving us allaround. So that helped a lot for
folks that and Janice obviouslydoes a lot of PowerPoint, but it
was a you know a group situationand a teaching situation. And
it's really the movement of iTwo we it's really what any of
(09:45):
us who were part of the women'smovement knows that it was the
consciousness raising and theconversation that broke the
silence of thinking you're alonein this either terrible world
that has such injustice is or aAround pain from the realities
in which we, we have to workwith to turn them into joys and
(10:10):
turn turn them into somethingpositive
Greta Harrison (10:14):
to turn them into we what we working towards
helping create the world we wantto see. Correct? Absolutely.
Absolutely. I love that. That'sthank you for sharing that
because I think that's a greatidea. Are there any other out of
the box ideas, since youmentioned that that that you all
have done with families or Iknow that we've already talked
(10:37):
about in season two, when Ispoke with mica, I can't
remember if we've spoken aboutit in our interviews so far. But
we did discuss how mica came tokind of a stalling point with
his circles of support. And thenyou shook it up. And you brought
in this facilitator and youguys, I have if anybody wants to
(10:58):
see if you go to bornfabulous.com and look on season
two on Mike his page, I have apicture of this beautiful plan
that they drew out for Mike itwell, it's a it's like his
journey of his life, really. Andyou had this amazing session
where you had, like 3035 people,some many in person, some on
(11:21):
computer via zoom, and you hadthis facilitator and that you
shook it out of the box toreinvigorate a circle of
support. Right. Yeah,
Janice Fialka (11:30):
I mean, what you remind us of is how important it
is to revisit and to readconversation. Never use that
word, but to reflect, to thinkabout because no relationship,
at least that I know, stays at,you know, an even keel and drops
off. Everybody has their ownlives. And so we need to come
(11:54):
together. I mean, and andintentionally talk about what's
working, and what are the gaps.
And Micah had a sense thatthings weren't, weren't working
as well. I mean, it you know, hethought about it, maybe I need
to move back to, you know, ourhome Detroit area. But it became
clear that there was more to it.
(12:14):
So that has to I mean, we'reback to that place, again, where
we're meeting with Micah witheach of the individual support
staff to talk about how arethings going is how, you know,
support staff needs to also findjoy, and fulfillment, if you
(12:35):
will, in that relationship. Sofor example, one of the support
staff, loved going to thevolleyball games at the
university, and didn't have alot of people to go to a lot of
people weren't interested. Butshe asked Mica. So mica said,
Yeah, I don't know much aboutit. But he went, and so it's,
it's that reciprocity, it's notnone of this is, you know, Greta
(12:59):
is one way. So anybody whothinks that they can pull
together the circle of support,even if it's large, or just a
couple people, and think thatit's going to glide off it, you
know, it won't, it just doesn't.
And so I think that is areminder to all of us to come
back and reflect and reignite. Ithink
Richard Feldman (13:24):
part of the challenge of family is to
constantly support the expansionof the relationships that our
children have, or young adultshave. And they're doing it
themselves, and they're goingthrough changes. So it's this
(13:45):
constant changing relationshipbetween where Michael lives and
what to eat with whom he isliving with in his community. So
there's re assertion and reimagination of the circle for
priek. Right before COVID wasreally an expression of Mike,
almost seven years older thanwhen he started his circles in
(14:09):
Syracuse, and more that he nowknows many more people in the
community than just theuniversity folks. So his center
of relationships was changing.
So he was he felt that, and thatwas really the the inspiration
and the challenge to us to workwith Michael to bring together a
facilitator to do a personcentered planning, and the
(14:31):
mapping you're talking about.
Yeah.
Janice Fialka (14:34):
And you know, we were always sort of I bet other
parents can relate to this, likeon the search for who can we
pull in to, you know, engagingwith our son or daughter, you
know, what connections can wemake? And I'll just very quickly
tell you, I remember we were inHawaii, and we had presented and
(14:56):
a mother came up and was talkingto us and she said, Oh, I My
sister in Syracuse, she's adultsand has kids and she likes to do
a lot of volunteer work. Andshe, she, she works at a soup
kitchen or something like that.
So I'm going, how do I connectthis woman to Micah, who's in
Syracuse, while I'm talking toher sister in Hawaii, you know.
(15:16):
And so, I think that isn'talways easy for any of us. You
know, we tend to be a little bitmore out outward in our
relationships. But I do thinkthat as I said earlier, the
intentionality of invitingpeople in in lots folks aren't
going to come. But you know, mygoal is one out of 20 have this
(15:39):
incredible opportunity to meetsomeone new and do you know,
learn something about themselvesas well as the other person?
That
Greta Harrison (15:51):
is so true, you always have to be thinking
outside the box. And the wheelsalways have to be spinning,
don't they? Yeah.
Janice Fialka (15:57):
You know, I remember when Mike learned that
phrase, out of the box thinkingthis was when he was in high
school. And when in he wasintrigued by it, you know? And
when he would meet people, he'dsay, hi, you know, I'm like, and
are you one of those people thatthink inside or outside of the
box?
Greta Harrison (16:17):
He would ask him right off the bat. Right. Yeah.
I love that. Yeah. Right to thepoint. That's great. That's,
that's I love that the rawhonesty there. Let's get to the
let's get to the point there.
Yeah. I wish I could do that.
Unknown (16:38):
Practice.
Greta Harrison (16:41):
All right. So now, we've talked about Mike his
living situation. And I knowthat he has a support team, does
he have an actual roommate? Oris it more of a support team?
And the reason I ask is one ofthe issues that a lot of
families have is, and selfadvocates, I know and just
(17:03):
always say families is theconstant turnover in support
teams sometimes. So can youaddress that with your
experience?
Janice Fialka (17:14):
Well, you've named it, it is an it is a
reality. I guess sometimes I'dsay it's an issue. Sometimes
it's a gift. Mica has currentlya wonderful roommate, who is a
med student, and he was Mike,his roommate a couple years ago,
(17:35):
and now is currently hisroommate, but he too will be
leaving. So each, each session,if you will, has been about a
year. That is a person whoreceives some compensation for,
you know, light engagement, ifyou will, more natural supports,
I guess you could call it. Sohis rent is, is covered. And
(17:57):
then he hangs out to mica theyjust went to the store together
and do some shopping once inthey usually have dinner
together watch TV or unwind inthe end of the day. So that is
an issue is this and Michael? Idon't you know, I think he's
comfortable. If we share that,you know, that's a frustrating
(18:19):
point for him. He knows thatalmost every year, someone new
will come along because many ofthem are students. And so they
they do move on. So I'll letRichie talk about our hope is a
design for maybe dealing withsome of that.
Richard Feldman (18:37):
Remote, always reminded of Judith snow from the
inclusion folks in Canada, whowas the first person to have the
money, follow her and let her befreed from the institutions in
Canada, and one of our mentors.
And she had over 600 stafffolks. And people that worked
for and with her over herlifetime and outlived many, many
(19:02):
expectations of her and I saythat because I think one of the
most painful things is roommatesand changing staff. And you
know, with the roommate, it'she's had roommates that have
been, you know, have not beengood at all. Not responsive, not
(19:22):
not, not harmful, but just notgood, you know, not engaging and
so forth. And unfortunately,that's part of inclusion and
living to learn how to deal withroommates. I mean, we've all had
roommates that are not so good.
Whether they college or aftercollege or you know, so So
(19:47):
that's unfortunately part of it,it hurts to see. Finding a long
term roommate is an interestingchallenge. I don't know how that
emerges, really but so What wedecided to do was, and I think
we might have shared some ofthis is purchase a duplex in
(20:08):
upstairs and downstairsapartment in Syracuse. And the
hope is that he has a roommatethat he selects as he currently
does now. But then thedownstairs rather than just
renting to students rent topeople who have some care or
concern and wanting some levelof relationship with Micah. So
(20:32):
it enlarges is intentionalcommunity, beyond his roommate
and beyond, different from hiscircle and different from the
neighborhood, in different fromhis staff. So it adds another
aspect to relationship to wherehe, you know, he knows the
people that care about him, youcan go down there, his roommates
(20:53):
not there for a weekend or aweek, he's got some people he's
friendly with, and may havedinners, you know, here and
there with them and stuff likethat, you know, plant the garden
together outside, who knows? And
Janice Fialka (21:06):
I, you know, I think the reality is, it's easy
for me to say this, it's not howI necessarily feel in the middle
of the night, is that as familymembers, or friends that I want
to be there for my kid tovalidate those feelings of
sadness and frustration, youknow, I, there is no magic one.
(21:29):
I mean, it may be the realityfor a while longer than he
wants, or we want for him. Thatthere is that, you know, every
year sort of changing. And so wehave to make sure that we, I
believe, give him theopportunity to talk about that.
And also to point out how he'sgotten, you know, in a sense
(21:52):
better at identifying what hewants in a roommate. And so when
one situation didn't work out,well, he reached out to other
people and said, Who else hashad problems with roommates? And
how did you deal with it? Sothat's an issue that he could
take back to the circle offriends. So I can't make all
(22:12):
those things better. Oh, boy, doI wish that I could. What I
have, what I think I'm requiredor want to do is be able to be
there for him to acknowledge it.
And then to find the next stepsthat allow him to continue to
feel some good and good abouthis life.
Greta Harrison (22:30):
Thank you for listening to Episode 11 of
boring, fabulous podcasts thirdseason. I hope you enjoyed it
and want to hear more. Someshort video clips from most
episodes are available on ourYouTube channel and unborn
fabulous podcast.com. In Episode12, Janus enriched we'll discuss
interdependence, differentgenerational senses of security,
(22:53):
the positive effects ofindependence, interdependence,
the true meaning of inclusion,mica, Sister Emma and the
importance of siblingsperspective and more. Please
follow on like us on Facebook,Instagram and Twitter. If you
enjoyed this episode, I'd behonored if you would leave a
review wherever you heard thispodcast. Now please enjoy this
(23:13):
clip of love as a potion. Thelyrics are by Melissa regio, a
young lady who had Down syndromeand was the focus of episodes
one through four and season one.
The music and voice are byRachel fuller
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