March 12, 2025 • 54 mins
What does it take to become a "Swiss Army Knife of Disability Advocacy"? For John Fela, it began with the birth of his son with autism who is now 16 and nonverbal. His journey from confused parent to national advocate reveals the profound challenges and unexpected gifts that come with raising a child with disabilities.
The path wasn't always clear. John candidly shares his initial struggle to accept his son's diagnosis and find his footing as a father when traditional parenting roles were upended. "What I struggled with in the beginning was finding my role," he explains. "I couldn't be the breadwinner, I couldn't manage all the therapies—so who was I as a parent, as a husband, as a father?" This identity crisis eventually led him to discover his true gifts in advocacy, networking, and relationship-building.
Education presents particular challenges for families navigating disability. John offers valuable insights about the realities of public versus private schooling, cautioning parents not to be deceived by appearances: "Anything looks good on a website." His family ultimately made the difficult decision to place their son in a residential facility a thousand miles from home—a choice requiring tremendous surrender but proving beneficial for their son's development.
Communication with a nonverbal child requires creativity and patience. Through a combination of body language interpretation, basic signing, and assistive technology, John has found ways to connect with his son. He emphasizes the importance of addressing individuals with disabilities directly rather than speaking about them as if they aren't present: "He doesn't speak, but he does hear."
The conversation takes a powerful turn when John discusses the vital importance of community support. Having transitioned from feeling completely alone to building a national network, he now helps other families find their lifelines. His work with Joni and Friends, a global Christian disability ministry, allows him to help churches create welcoming environments for people with all types of disabilities—visible and invisible.
Looking toward the future, John confronts the reality many special needs parents face: what happens when they're no longer there? With his son being an only child, creating intentional community becomes even more critical. Who will check on him, celebrate birthdays, or simply offer a hug?
Whether you're navigating disability personally or seeking to better support those who are, John's story offers profound wisdom about finding purpose through unexpected challenges and building communities that sustain us through life's most difficult journeys.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hello everyone, thanks again for joining me on
another episode of the DorsiRose Show.
Today we have a special guestwith us and his name is Song
Feller.
He is seeking to trademark thetitle of the Swiss Army Knife of
Disability Advocacy advocacymeaning that he is involved with
(00:23):
disability and special needsadvocacy on a variety of levels.
He is the parent of a16-year-old son with autism who
is also non-verbal.
He is a former elementaryeducator for almost 20 years who
(00:48):
transitioned into doingadvocacy on the side several
years ago and now has a growingnational platform through his
personal work and also with hisemployer, zoni and Friends,
which is a global Christiandisability ministry.
(01:09):
John, thank you so much forcoming on the show today.
Absolutely Thank you for havingme.
What is Now?
I usually ask an icebreakerquestion and if you could go
without either music or bookswhich would it be?
Speaker 2 (01:33):
That's a tough question.
Yeah, that's a really toughquestion.
I'm a pretty literate person.
I do love to read.
I do enjoy reading.
Obviously I love to write, butI love to write.
But if I had to give one up, itwould probably be the books,
because I don't know that Icould go without music.
(01:54):
Music is just my motivation andmuse and I'm also a person who
I can't ever just kind of workin silence or sit in silence.
You know, I always need noise,even going to sleep.
We have a white noise thinggoing, so yeah, so I I don't
think I could do it withoutmusic, for sure yeah, I would
probably agree with you on that,when I'm a big music guy as
(02:17):
well.
Speaker 1 (02:18):
What has been your greatest challenge as a special
needs father?
Speaker 2 (02:24):
good question question.
You know I will tell you that,like most parents, when we
started out with our son'sdiagnosis, we really struggled.
We really struggled in thebeginning, you know, first of
all because your naturalinclination as a parent is to
try to fix your child right, tryto find a cure, try to find
some therapy or treatment that'sgoing to do it.
(02:46):
And in most cases, especiallywith something like autism and
developmental disability, youknow you may find things that
are helpful, but there isn't anyone magic bullet that's going
to fix things.
And so I think for me what waschallenging is one to learn to
first of all accept my child ashe was and understand that he
(03:08):
was still my son.
He was still an incredible giftin terms of you know just his
nature and personality and justyou know the joy he kind of
brought to everybody around him,to everybody around him.
But what I also struggled within the beginning too was kind of
finding my role.
Meaning I think what happenswhen disability comes into a
(03:29):
family is that everything getssqueezed and problems that exist
specifically in a marriage kindof get exacerbated.
They get blown up.
So for our family you know myson's mom, my now ex-wife she
was an excellent mom.
She's an excellent specialneeds mom.
She was somebody that couldalways manage the therapies and
(03:50):
the insurance and theappointments and all of that and
that was her gifting and thatwas great and she was a very
type, a personality, so that'swhat she leaned into.
I didn't do that, you, I didn'tdo that.
Most when you have disabilitymost dads at least kind of the
default is, well, I'm just goingto throw myself into my work,
(04:10):
I'm going to work very hard tosupport the family, pay for all
of these things, and that'ssomething that I hear from moms
and dads all over.
And the reality was I couldn'tdo that either, because I was
never the breadwinner.
My wife always made more moneythan me.
So it became an issue of whowas I.
Who was I as a parent, as ahusband, as a father?
(04:31):
You know what kind of definedme.
And over time, what I learnedwas that I was able to lean into
my gifts, which really isadvocacy, but in a bigger sense
networking, communication,relationship building.
Advocacy, but in a bigger sensenetworking, communication,
relationship building.
And so now I can kind of saythat, while my son's mom is
still that detail-orientedperson, I'm more of the big
(04:56):
picture guy.
I'm the one who has therelationships with different
organizations and also otherpeople around the country that I
can ask questions from, getadvice from, get direction from
that type of thing.
So it really came down to.
You know, get advice from, getdirection from that type of
thing, so it really came down tofor me was not just who I was
as a parent, who I was as a guy,because I think it really
brought a lot of things intoquestion and it puts you in such
a pressure cooker that youreally sometimes don't even know
(05:19):
where to turn for support orhelp.
And again, that's another bigthing that I always talk about
is getting support, gettingcommunity around you, building
some intentional relationshipswith people who understand you.
In the beginning we definitelydidn't have that either, and
that's, I think, also why it wasa real struggle.
Speaker 1 (05:35):
Right.
How has your son's disabilityaffecting his choices or
opportunities when it comes toeducation and independence?
Speaker 2 (05:50):
That's huge for him because of the level of nature
of his autism.
You know, he will never trulybe functionally independent.
There's really nothing he cando totally by himself, right,
that doesn't mean that he hasn'tlearned and grown, but you know
, it'll never be something wherehe can do totally by himself.
Right, that doesn't mean thathe hasn't learned and grown, but
, you know, it'll never besomething where he can do it by
himself.
I'll tell you a struggle earlyon, when he was younger, again,
(06:15):
we weren't really sure exactlywhat the best education
environment for him was.
Now, his mom and I both had abackground in teaching, but this
was still our first child andyou know, again, even though I
actually had, most of myexperience was in elementary,
but I did have some preschoolexperience, but you know, I
wasn't, you know, an expert onearly childhood by any means.
So you know, we tried somedifferent things.
(06:37):
We tried some differentenvironments like private
daycare, montessori, whichactually I have a long
background in Montessorieducation, and some of these
different environments had someadvantages.
But the problem was, again,because he didn't develop any
true level of independence wherehe could do some things by
(06:58):
himself or most things byhimself, because he always
needed that support.
What we really found was a lotof the environments that we
thought looked good or presentedas okay, this might be ideal
for him.
The reality is that they didn'thave the right support for him.
And one thing that I oftenalways talk to parents about as
(07:18):
well is, you know, when you'rehaving this conversation about
public school versus privateschool, because you know there's
a default especially where Ilive in the greater Chicago area
, there's kind of a default tosay, well, don't send your kid
to a public school because he'sjust not going to get a good
education.
Well, that's not always thecase, right?
And it's not to say I've workedat some good private schools.
There are some good privateschools out there, but private
(07:40):
schools, at the end of the day,only have so much in terms of
resources.
Essentially, a private schoolis just a small business right,
(08:04):
one-on-one with him all day,just really needed a very
supported and accommodatedcurriculum for his needs.
That's something the publicschool is built for and
technically funded for.
Now again, is every publicschool great?
No, of course, not case.
What we learned pretty quicklywas okay, private school was not
going to be a fit for him.
Where do we go.
(08:31):
So we actually had to make thedecision because we didn't
really like the public schoolswhere we lived at the time.
So we decided to kind of moveheaven and earth, sell our house
, move into a much better townwith a much better school
district.
You know we definitely got somesupport from family along with
that as well, but we were ableto do the transition and he got
into a great school districtthat he actually wound up, you
(08:51):
know, going through all ofelementary school, middle school
and into high school.
However, this last year at hispublic high school, it was
extremely challenging and wefound ourselves almost back to
that same place where we werewhen he was a very young child,
meaning the public school nowcould not meet his needs.
(09:13):
Now, some of that was notnecessarily their fault, because
he kind of moved into thisphase where he started to become
slightly more aggressive, morechallenging to work with.
He had a variety of physicalissues that were kind of
affecting all of that.
So that wasn't all their fault.
But at the same time they werepretty clear with us that they
didn't think they could meet hisneeds either.
(09:34):
So what we thought could workfor, you know, throughout high
school and into.
You know the transition years,the transition program years.
We had to make another choiceand this choice wound up with us
placing our son at aresidential facility as well as
a day school in Wichita, kansas.
So and that's about a, you know, that's about a thousand miles
(09:56):
away from us.
So that was not a first choicebut it was the best choice given
.
You know his needs and thesupport that he required at this
time.
I can tell you that, asdifficult of a decision and
transition as that was,especially for me as a parent, I
can tell you he's thriving andhe's doing great.
But there's so much surrenderyou have to do as a parent in
(10:20):
order to make that choice rightand to put him in a place where,
ultimately, it's for hisgreater good and the best
intentions of everybody in termsof what's right for his life
moving forward.
But it still doesn't make iteasy when you have to make those
choices.
Speaker 1 (10:37):
nonetheless, yeah, absolutely Absolutely.
Now, when you were mentioningabout the schooling system and
some of them not being thatgreat and not having the
resources you know for him care,or they don't have the amount
of special needs kids in theschool system, it's a great
(11:13):
question and here's kind of howI try to explain it.
Speaker 2 (11:20):
So if you attend a public school right and you have
a child with a disability andyour child has an IEP, that IEP
is a legal document and that IEPis going to outline what your
child needs in terms of so manyminutes of, let's say, this form
of therapy.
You know, when it's availableat the school, this many minutes
or maybe a dedicated one-on-onethey need to spend this many
(11:42):
minutes in, let's say, like aresource room or in a dedicated
special ed room, that type ofthing.
The problem is this Manyschools and I have worked at
public schools on the south andwest side of Chicago where even
kids that had the IEPs theschools didn't have the
resources in terms of theydidn't have enough staff so they
couldn't supply a one-on-one.
(12:03):
They didn't have the therapistsin-house.
Sometimes the therapists wouldcome in from, let's say, like
another school setting, but thenif they weren't a person
dedicated to that site, you knowthey weren't there all the time
, like resource room.
(12:26):
But even in that case, when itwasn't staffed properly, they
just couldn't have the studentsthere, you know, as long as
maybe they needed to.
So you know I would talk toparents about really kind of
advocating for themselves,because the reality is is that
by law, the school needs to bemeeting those needs and that's a
legal document.
So, in theory, a person could,you know, pursue legal action,
if they wanted to, against theschool.
In theory, a person could, youknow, pursue legal action, if
(12:46):
they wanted to, against theschool.
Unfortunately, a lot of thefamilies just weren't aware of,
maybe, the totality of theirrights or maybe how to even
engage that process.
It was just well if this iswhat the school says, okay.
And likewise, you know, whenyou have like, where my son
attended school for years, youknow that was a more affluent
setting, so they could affordmore staff, they could afford
(13:07):
more resources, they had all ofthese things right.
And so what it comes down to andsometimes here's how I use the
example, maybe, let's say, fromlike, using like a retail
analogy you know you can havethe same product at two
different stores, right, and Ican go to one store and the
product is, let's say, 25%cheaper.
(13:30):
Well, I'm going to go to whereit's cheaper, probably right,
because why not?
It's the same thing, but why isit more expensive?
Well, yeah, there's markup andthere's all these different
things, but a lot of times italso comes down to the service
you get at a particular store.
Or let's say, you ordersomething online and if it's
more of a seamless process, ifthe customer support is better,
(13:53):
if, let's say, there's some kindof an issue, you know, a lot of
things factor into that and alot of times it's the service
you get, it's the support youget.
So I sometimes will use ananalogy like that to say you can
have the same product in twodifferent places and, yeah, you
probably don't want to have tospend more for the same thing.
(14:14):
But depending on what you'regetting right and you know again
, even, let's say, in theexample of buying a new car,
right, you could purchase thesame car, two different dealers.
But if one dealer is going togive you better service, if they
are going to benefit you morethroughout the lifetime of that
car, making sure that you'retaken care of and you know,
(14:34):
maybe there's discounts or dealsthat they give you along the
way or something like that forbeing a good customer, those are
all things that play in.
And so I use that analogy withpublic school to say you know,
you could send your child to aschool in a challenged area
again like where I was on thesouth or west side of Chicago
could send them to a moreaffluent area in the Chicago
(14:57):
area.
They're still required to getthe same education right.
So on paper it should be thesame, but the problem is some
places have the resources andsome don't.
It's that inequality.
Now, again, by law, you knowthere's X amount of dollars that
you know are supposed to beappropriated to every child and
every special ed student as well.
(15:18):
But again, it's all of thesefringe things.
Right, you know, if you walkinto the school where my son
went to elementary for years andyou walk into some of the
buildings that I've taught in,you can clearly see the
difference, right, and again, itcomes down to the resources and
the materials and the staff andthe training.
So what I, again, alwayscaution parents about too.
(15:40):
And then to go back to thatdiscussion about the private
school, okay, it's also aconversation of you can walk
into an environment that looksgreat.
You know, and, as I tell people, anything looks good on a
website.
You know you can make anythinglook pretty on a website.
Likewise, some of theseenvironments you can walk into
(16:01):
and you know it takes yourbreath away.
But what's the quality of theeducation?
What are the qualifications ofthe staff?
What is the level of theirqualifications?
How much background andexperience they have,
specifically when we're talkingabout disability right, when
we're in an environment likethat, what do they have to offer
?
How are the staff trained?
What materials and resources dothey have?
(16:22):
And in many cases, when it comesto like more of a special ed
environment or working with kidswith disabilities, they don't
really have that because, forthe most part, that's usually
not their focus, unless it istheir focus, unless it's a
school dedicated for that.
If it's not, you know, thenyou're going to have some lack,
and I actually tell people youmay be much better off at your
local public school, even if youdon't think it's a better
(16:44):
education.
The reality is is that don't bedeceived by how something looks
, either on a website or whenyou first walk up to the door.
Yeah, it's great to have a niceenvironment.
We all want that for our kids,but what is the actual quality
of the instruction?
What is actually going onbehind the doors?
What's happening inside thebuilding?
That's what people want to beaware of, and so I often coach
(17:07):
parents, go to schools, talk tothe staff, talk to the
administrators, take a tour, geta feel for it.
Don't make an assumption justbased on maybe you know what
other people have said or maybe,again, what you're just maybe
hearing or seeing online,because that's not always
accurate.
Speaker 1 (17:24):
Sure, how would you advise my listeners and even
people in general, when theyapproach your son, who does have
autism and who is nonverbal, tointeract with him?
Or do they interact, you know,with you and your ex-wife or his
(17:49):
mother, and if they're an egg,to interact with them, or should
?
Speaker 2 (17:57):
they interact with him?
Yeah, and that's a fairquestion too.
You know, the one thing that Ialways you know if new people
are with him, or you knowwhether it's, let's say, in a
social environment or in aschool environment working with
him.
You know, we always encouragepeople to engage with him, right
?
Because the other thing that Ididn't mention is my son is also
(18:18):
nonverbal, so he doesn't speak.
Now, he will utter a few wordsat a time, but you're not having
a conversation with him, right?
But what we remind people isthat that doesn't mean he's
nonverbal, but he does hear,right?
So he is taking the language inand so, even though you're not
getting the output, the realityis that if you're speaking to
(18:40):
him or speaking to him ratherthan at him, kind of a thing
you're trying to engage with him.
He's probably going tounderstand you.
Now, is he always going to dowhat you'd like him to do or go
along with everything?
No, you know, obviously, but atthe same time, you know the
same advice that I would give toanybody working with a person
with a disability cognitive,physical, whatever treat them
(19:02):
like a person, right, we startwith treating them like a person
.
You know, everyone has somedifferent needs.
Everyone has some differentchallenges.
Ok, how about we start bytreating you like a person and
then maybe, if there's somethingyou have a question about,
coaching people up, whether it'sschool staff or people in his
environment?
One thing that we actually usedas a tool that I think was very
(19:36):
valuable was whenever he wouldstart, let's say, a new school
year at his school so like a newclass, and it might be some of
the same kids, but somedifferent kids too, whether it
was in a school environment orat a Sunday school, at church,
what we would do is we wouldactually show up and speak to
the kids and we would explainhey guys, this is who Chris is.
Chris is a little different.
(19:56):
He's not going to communicatelike you.
He's probably going to havemaybe some different behaviors.
But guess what?
Let me tell you all the stuffChris likes.
Let me tell you all the thingshe likes to do.
Let me tell you the things thatyou know make him happy or put
a smile on his face.
If you can engage him that way,then great.
You know, you've made a newfriend with him, and I know he
(20:16):
would very much appreciate that.
So a lot of it also, too, iskind of getting out in front of
it.
I know that there is a fairamount of shame and stigma with
parents when they have a childwith.
That has challenges and youknow, a lot of times it's okay.
(20:37):
Well, you know, some familiesare more um sensitive about, you
know them kind of being intheir own shelter environment.
Some families do want themincluded with everything and and
in the mainstream classroom andall that and that's great, um,
but at the same time time getout in front of it and really
embrace, you know, the kids andthe environment and the staff.
So they know one, you know alittle bit more about who he is.
(20:57):
But two, they also know thatthey've got a line of
communication to you as parentsand this way then you know that
just kind of helps things laterin the year.
If something comes up or ifthere's a question about
something you know, obviouslythey know that you're available
for them.
Speaker 1 (21:12):
Going off on what you said there with you know the
parents.
You know growing up for my ownself, you know my parents, you
know allowed me to go out andyou know.
You know you know go out withfriends, have my own.
You know.
Go out with the baseball team,and you know, play basketball
(21:33):
and football and whatever else.
You know I could do and youknow figure out for myself what
I could and could not, could andcould not do.
Speaker 2 (21:44):
Yeah, and likewise with my son, you know, for
example, he doesn't really playsports because he just doesn't
have the coordination for it,but he likes watching things on
TV, like he likes watchingfootball with me, he'll watch
basketball, kind of thing.
And again, it's tough for someparents, especially when it's
like dads who have like a sonwith autism, because a lot of
times they have an expectationdads who have like a son with
(22:05):
autism, because a lot of timesthey have an expectation Boy.
I really thought that my kidwould play this sport, or we'd
go fishing or hunting orwhatever we do, and the reality
is, is that, okay, some thingsmight not happen, but that
doesn't mean they can't still bea part of it on some level.
Like you know, we used to havea basketball hoop in our
driveway at the house he grew upin, and you know I'd go out
(22:29):
there with him and I'd shoot thebasket and or shoot the ball at
the basket.
Whether I made it or not, hethought it was fun or hilarious,
he'd clap, he'd, you know,laugh about it, kind of thing,
and then he would try some of ittoo, and then we'd pass the
ball around.
So, whatever you can do, dothat Right, because, again, it
might not look the way youexpect it to, but that doesn't
mean that that person stop beingyour child, that they don't
(22:50):
enjoy those things, that theyjust don't like that
togetherness Right.
And that's the thing that Ireally appreciated about you
know, all those early years withmy son was I really just
treated him like any other kidand I knew there were some
things he liked or didn't, butit was about spending the time,
right, you spend the time withthem and then obviously they
know you, you love them.
Speaker 1 (23:10):
Yeah, my parents did the same thing, you know, for me
.
They, you know they allowed meto go out and whatnot, and I'm
grateful for that.
You know they, like you saidearlier, they weren't the type
of people that put me in abubble and, you know, put me off
to the side and said, no, he'snot going to be able to do
anything in this world.
Yeah, yeah, definitely Goingback to your son and being
(23:35):
nonverbal.
How do you communicate with him?
What is that experience like?
Speaker 2 (23:43):
So the kind of default that we have in terms of
that communication, you know,on the one hand, as parents, you
know, it just kind of almostbecomes that sixth sense of well
, I know what he wants, kind ofa thing, just because I've seen
him ask for this a million times.
I know his body language, Iknow what he's looking at, I
(24:05):
know what he's kind of searchingfor, language, I know what he's
looking at, I know what he'skind of searching for.
You know, early on a lot of histherapists, especially ABA
therapists, would teach him howto point at something that he
wanted, a preferred item, whichhe will still do, and he knows
some basic signing, like when hewants more of something, or,
you know, to let you know whathe's looking for.
He does have a communicationdevice.
So he has an iPad that has theparticular app we use is called
(24:29):
Touch Chat.
So it's just a communicationapp.
I know there's a couple ofdifferent other ones out there
and it just has.
You know the app itself hasjust different windows and
pictures kind of thing, and soyou know it's essentially just
like, you know, the Pax PictureExchange.
It's OK, what would you like toeat today?
And you go to the page forrestaurants.
I want to eat here, I want toeat there, I would like fries, I
(24:51):
would like a burger.
Okay, so he will do that, Iwill tell you.
That's challenging too, becausethere are times when he just
gets bored of having to talk toyou on there, and a lot of times
either he'll just push anybutton just to make you
satisfied or think he'ssatisfying you.
But with some of his therapists, that can really get him to
focus.
The great thing is that notonly can they get a lot of
(25:13):
output out of him, but he canactually communicate.
You know how he's feeling thatday, or a little bit about you,
know what he would like to do orwhat he liked about something.
So we will get some of that.
I know one therapist he's hadthat's really good will actually
read like a simple chapter bookto him and again, it's
(25:34):
something definitely lower thanhis level, but it's something he
can grasp.
And he's able to actuallyanswer questions through his
communication device.
He's able to spell out somebasic responses.
So that's awesome too.
So it's and it's a challenge asa parent too, because, again,
you're so used to just kind ofassuming what your child wants
(25:54):
or jumping in and saying okay, Iknow you're going for that, so
let me help you, as opposed tochallenging him more to say okay
, use your words, tell me.
You know, maybe not literallyhis words, but you know he can
express himself in somedifferent ways.
So it's always a challenge as aparent to you know, maybe not
literally his words, but youknow he can express himself in
some different ways.
So it's always a challenge as aparent to you know, make sure
that you're trying to pull thatout of him.
You know, but you know it isone of those things many times
(26:16):
where it's like well, I just, Ijust know him and you know it
also depends on your day, right?
If it's, if it's maybe been acrazier day, okay, well, we're
just going to fill in some ofthe gaps for you.
Speaker 1 (26:35):
But if you have more time and more space to do it.
You know it's a great teachingopportunity.
It's a great time to work withthem on some of those skills.
Sure, how did you go from beinga teacher to being an advocate
for people with disabilities?
Speaker 2 (26:46):
So my road from educator into advocate is a
pretty interesting one.
You know, as I kind ofexplained at the beginning of
our conversation, I reallystarted out just being another
lost, confused parent, didn'treally have a lot of resources,
didn't have a lot of people totalk to, and I figured out that
I needed community.
You know, we didn't have a lotof friends who had kids with
(27:09):
disabilities.
We didn't really have a lot ofpeople to lean into and
especially as a guy, you know,although I had guy friends that
you know maybe were married orhad kids, they didn't understand
what I was going through.
And so it was kind of a journeyfor me that really started out,
one to kind of developcommunity.
So we had that support as afamily and some of it started
(27:37):
out very small.
For example, I started a group,a support group for special
needs dads right in ourcommunity right, we would meet
at this restaurant every monthand I started out with another
guy in the area and took time tokind of get going.
But we developed traction, westill meet and it's been going
on for several years.
So it was small things likethat.
But then I also had this Ialways had a desire to write.
(28:01):
I always wanted to write andbecome a writer in some capacity
, kind of as a passion of mine,and so the organization that I
currently work for, which isJohnny and Friends one of the
outreaches they had over theyears that we would participate
in is a family retreat, which isa week-long retreat for
(28:23):
families of disability.
There was a retreat center inMichigan.
We still use it today.
My son went for several yearswhen I was married to his mom,
and he's been back since with me.
But at this retreat we'd meetall parents of disability from
all over the Midwest basically.
But there was a mom who Iconnected with, who did some
(28:45):
writing, and I told herconnected with who did some
writing.
And you know, I told her, youknow I'm looking for some
outlets, can you help me out?
So she was writing for a verysmall disability ministry
organization in SoutheastWisconsin and she said listen,
we're always looking for morewriters, more bloggers.
Specifically, be great to havea dad, be great to have a guy.
Why don't you try it?
So I tried it and I wasn't sureabout it at first because it
(29:08):
wasn't something I had ever donebefore.
I started doing it for aboutsix months, really liked it.
And then that organization gotmerged with a bigger national
organization called Key Ministry, again also for disabilities.
They're based out of Ohio butthey have more of a national
focus right and nationaloutreach.
So I got taken on as a writerby them and I continued to write
(29:28):
and, you know, got a lot moreexposure.
They do a yearly conference Igot to speak at.
There were other organizationsthat asked me to speak at
conferences as well, speaking tomy experience as a parent.
And then I started to do, youknow certainly, a bunch of
podcast interviews like this andactually contribute to to
couple of friends' book projectsas well.
So I started kind of gettingmomentum again, really just
(29:54):
wanting to look for just somevessel, some way to just kind of
share my story and to justshare what I had learned along
the way, kind of a thing, andjust kind of have a platform
like that.
And through all of that workagain, I've been able to develop
relationships with a lot ofgreat advocates and people who
(30:14):
are running, you know,nonprofits and ministries, all
disability focused, all over thecountry.
And again because of that, youknow, and certainly in my
current day job, which againJohnny and Friends is a global
Christian disability ministry,but we do a variety of outreach
locally, you know, anddomestically as well.
So in my role there again I'mable to really lean into the
(30:35):
resources and the relationshipsI've developed to be able to
help families, to equip them orget them the support they need.
Or, you know, we get all kindsof random questions from
families of ours at the officeall the time and usually I'm the
guy to answer them because I'mthe one who kind of has a feel
for all these things kind of allover.
So it really started out asagain a desire to build and just
(30:57):
have community period and I gotthat.
But then I got so much morebecause, you know, now I'm in a
place where you know if I needto talk to someone.
You know there are guys in myarea I could certainly call and
talk to for sure, but sometimes,depending on the question, it
might be somebody out of stateor on the other side of the
country, and that's fine too.
(31:19):
So that is a big difference asopposed to what I had before,
which was feeling like Iliterally had no one, and that's
a very dark, lonely place to be, especially when you have a
child with a disability, andespecially when your life and
marriage goes through somepretty rocky places, like ours
did.
And so, as I really emphasizein terms of advice, you cannot
(31:43):
do this without community.
You must have support, you musthave relationships.
If you don't have them, findthem.
If you need help, I'm alwayshappy to help anybody do that.
But you can't do it alone,that's for sure.
Speaker 1 (31:57):
And just to give a little insight into Goni and
Friends Goni Erickson-Toddler isthe woman that started that
ministry.
Speaker 2 (32:10):
Yes, she has an incredible story For those who
don't know.
She became a quadriplegic atthe age of 17, all the way back
in 1967.
She had a diving accident.
She actually grew up inBaltimore.
During the summer she took adive into Chesapeake Bay with
shallow water.
She bonked her head and shetechnically, she broke her neck.
(32:31):
Now they were able to save herlife, but again she became quite
a pelagic instantly and soshe's been a wheelchair user
that whole time and she hasreally used her experience which
, if anybody is interested inseeing her story and what that's
all about, you can actuallyfind the movie on YouTube where
(32:51):
she actually plays herself.
It's from the early 80s, Ithink.
So, yeah, it's like amade-for-TV movie, but it's out
there, it's free, you can watchit.
But you know, in the early daysshe was struggling, she was
frustrated, she was angry.
You know this was not what shewanted for her life and you know
this was not what she wantedfor her life and you know,
(33:11):
famously she would often remarkabout how she would have taken
her own life.
But when you have no use ofyour arms and legs it's hard to
do that kind of thing.
So her prayer became God, ifyou're not going to let me die,
then teach me how to live.
And so through that shedeveloped all of these outlets.
One was painting, which isremarkable and she still does
this today.
She learned how to paint with abrush in her mouth.
(33:32):
She does wonderful justpaintings of, you know, a lot of
nature, scenery, animals, thattype of thing.
It's just incredible stuff.
And then that got her on anational scale, on a national
level in terms of awareness,people started to write her
letters.
Level in terms of awareness,people started to write her
letters.
And you know, she kind ofdeveloped this ministry just
kind of around the kitchen tablekind of thing, and got friends
(33:53):
Johnny and friends to help heranswer letters and, you know,
communicate with people.
And then over time the ministrygrew, you know, over 40 years.
So now we're in about 30countries around the world.
We're on, you know, fivecontinents.
We do a variety of outreachwith families.
Again, I mentioned retreats.
We do marriage getaways formoms and dads.
(34:13):
We do warrior getaways forveterans who are affected by
disability.
We have our Wheels for theWorld Ministry, which is a
global wheelchair ministry wherewe deliver wheelchairs around
the world.
I actually just had theopportunity to come back from a
trip we did to Chile and deliverwheelchairs there.
So that was kind of cool.
So it's a wonderful outreach.
And, specifically, my jobactually is that I train
(34:37):
churches of any size and anydenomination on how to welcome
people with disabilities.
I help them to develop programs, curriculum, Sunday school,
whatever they're needing.
I'm kind of the consultant thathelps them with developing
those things in theircongregations, should they need
them.
So that's also a big part ofour outreach and that's
(34:59):
something that I love doing.
Speaker 1 (35:04):
we both know that the disability is not only a
physical disability but it couldalso be, you know, inside as
well and you know, affecting thebrain and whatnot.
(35:24):
So how do, like you just said,do, how should you know, welcome
people with disabilities andwhat?
What does that look like?
Because I I've traveled arounda lot and you know, giving my
testimony at several churchesand you know, for the most part
(35:47):
I don't see and again, like Isaid, a lot of some of the
disabilities are not onlyphysical, but for the most part
I don't see a lot of people withphysical disabilities in the
searches today.
Speaker 2 (36:07):
Yeah, and it's a very interesting thing because you
know, when I talk, for example,when I train churches and you
know I give them you knoweveryone likes numbers and stats
because you know they want tounderstand what this all is
(36:30):
identifies individuals withdisabilities, that's all
disabilities as the largestminority in the world right now,
it's over 1 billion people, Ithink it's so, it's like it's
over 1 billion, it's like one infive people around the world
have a form of a disability,right, and that could be a
physical disability, cognitive,both, you know, type of a thing.
But the challenge is, is thatright now you're dealing with,
you know, first of all,certainly individuals that have
(36:51):
physical disabilities, and thatcould be, let's say, someone
who's a wheelchair user of anyage, kind of a thing.
Or certainly, as people getolder, you know, and they, you
know, have a need for more,let's say, assistance, let's say
getting in and out of abuilding, type of a thing.
But you know, then you get intoagain the cognitive
disabilities where, again, likefor example, in my son's case,
(37:12):
if you saw him walking down thestreet, you probably wouldn't
think there was anythingdifferent about him, and then,
within about 10 seconds oftrying to engage with him, you
figure out, okay, well, there'ssomething here.
But even going beyond that, youknow right now what we're seeing
and certainly I think there'sprobably more a lens on it
coming out of COVID and all ofthe you know, the ways we were
(37:33):
restricted from interacting, youknow, is the silent
disabilities, like yourdepression, your anxiety, you
know, and all of those thingsthat you know cause people to
really suffer on the insideagain looking perfectly normal
on the outside.
And again, in some cases itcould be a thing where, okay,
(37:56):
you know, somebody with ADHDmight have a little hard time
focusing on a conversation, butif you have a person with severe
depression, you know you couldhave someone who might really be
on the inside screaming forhelp, but, you know, on the
outside, look perfectly puttogether.
So how do you even know whatthey're struggling with?
And then, of course, how do yousupport them?
(38:16):
So that's why, especially whenI work with churches, you know,
again, it's a matter of, yes,you want your building to be ADA
, you know, compliant, and allof that.
You want to make sure peoplecan get in and out of the
building and things like that.
But you know, it's also justthe heart you have, it's the
awareness of okay, you don'tknow what someone has or their
(38:37):
diagnosis or how they're goingto present when they walk
through the door.
So you don't want to makeassumptions Again, you want to
go back to that idea of treatingpeople like people, right, and
then you know if you think about, on the one hand, you know the
family, let's say with a childwith autism, who you know, they
really want a place to be ableto attend a service on Sunday,
but their child needs extra helpor support or a buddy.
(38:59):
Okay, there's that.
But if you really are doing itwell and again leaning back into
that idea of community, wherecommunity is so needed and
important, if you have a person,let's say, dealing with severe
anxiety, depression or somethingalong those lines, and they
come into that congregation,they come into that community.
Well, they may not just comeright out and tell you oh, by
(39:22):
the way, I suffer with severedepression.
They're going to want todevelop a relationship with
someone or several people andmaybe they get invited into a
social group, small group ofBible study or you know
whatever's going on in the lifeof the church, and then they
develop enough of acomfortability to be able to
share things on a more personallevel.
(39:43):
But if that acceptance isn'tthere from the minute someone
walks in the door, and again youknow I'm using the church
example because that's my job.
But in the same way, whetherwe're talking about any
environment, workplace, school,whatever, just you go to a
friend's house for a party andsomeone you've never met comes
in the door, well, you have noidea of exactly, maybe, what's
(40:07):
going on for them.
So you always want to start outwith treating people as people,
not making assumptions andreally just, you know, kind of
allowing them the kind of safety, the emotional safety, to just
feel at home, feel at peace.
And as things are shared, asthings come up, then you know if
(40:29):
you feel you can support them,great.
If not, ideally there issomeone you know that can do
that.
But we have to.
When we're thinking ofdisability, we have to get
beyond this idea that it's justalways that person in a
wheelchair or that person whereit's so obvious physically you
know there could be someonetruly suffering that looks like
they're perfectly well puttogether.
(40:51):
So again, don't make anassumption about that and while
you want to respect their space,at the same time always be
available and always be open andalways be welcoming, because
that really means so much,certainly to families like me
with a child with a disability,or to, you know, I know a lot of
people, I know if they are also, you know, struggling with
(41:12):
things.
Speaker 1 (41:14):
As we get ready to wrap up here, one of the other
questions I have was how hasfaith played a role in your life
, along with your son's life,during this time, along with
your son's life?
Speaker 2 (41:28):
during this time.
So when I do give advice and Iknow I mentioned the community
thing, which is a big piece ofadvice for me but usually when I
give advice I give it in theform of number one little a and
number one little b.
So number one little a is myfaith.
I am nothing without myChristian faith.
When my son was born I was nota believer.
(41:50):
You know his mom.
I was actually raised Catholic.
My ex-wife was raised Jewish.
We were kind of there's, I guess, a few different ways you can
define it kind of secularlyspiritual, new age spiritual.
You know we certainly believedin God, but you know we weren't
interested in belonging to achurch, a temple or anything.
And then, as things developedwith my son's disability and of
(42:13):
course things got more squeezedin the marriage and the family,
we at least knew that we neededa community.
But even then it really wasn'tuntil we truly came to faith in
Jesus that things really startedto change.
And I know for me that happenedjust attending a men's Bible
study that a friend had referredme to, and my life was changed
(42:36):
forever literally in one night.
That doesn't mean that my soninstantaneously got healed.
It doesn't mean that theproblems in my marriage just
went away.
And all of that, and certainlyalthough my marriage was saved
then, his mom and I did wind upgetting divorced years later,
and I do have the blessing ofbeing remarried.
So that's great.
(42:56):
But the reality is that it's notthat life automatically becomes
better.
It's just that you know thathe's walking with you.
He's walking with you,supporting you, he's guiding you
, and I never felt alone afterthat.
And so, even with all the upsand downs with my son's
upbringing and raising him andall the decisions we've had to
make even though things in myfirst marriage didn't
(43:20):
necessarily work out the way Iwould have liked them to, even
though there maybe are a lot ofthings I wish could have gone
differently the reality is thathe's always been with me.
He has blessed me along the way.
I have learned to appreciate notjust what I have but the
experiences I've had, becausethe reality is, even with
disability, I can look at all ofthe incredible people I've met,
(43:45):
all of the families, all theparents, all the friendships I
never would have had if I didn'twalk this path because of my
child's disability, and that'sthe true blessing there.
So I count it all as joy, asScripture says, because at the
end of the day there are thingsthat I never would have had had
(44:05):
I not walked this path.
And that doesn't make it anyeasier.
But knowing that you have thatrelationship with Christ, that
does take certainly a big loadoff of your shoulders.
Because then you realize at theend of the day, it's not about
you, it's not about anythingyou're doing in your power.
You can surrender it to him andall he has for you to do is be
(44:27):
faithful and follow.
And I've certainly tried to dothat, you know, since then, for
sure.
Speaker 1 (44:33):
And then, what is the ?
What does the future look likefor your son?
Speaker 2 (44:43):
So right now he is at the school environment in
Wichita, as I mentioned.
That's going to be where he'llbe for the foreseeable future,
at least for maybe the nextcouple of years when he ages.
(45:05):
Out of that, his mom and I havebeen having conversations about
his living situation and alsoabout what his life is going to
be like.
One of the things that parentswho don't raise a child with a
disability don't necessarily getis when you have a child who
truly isn't going to beindependent.
It's not that you're coachingthem up through their life to
(45:28):
get them into college.
So it's not that you'recoaching them up through their
life to get them into college.
Okay, they're done with college.
They graduated.
Now they're going on towhatever life they're going to
do, whatever job they're goingto do, have a family, et cetera.
In my son's case, he's notgoing to have any of that and we
really need to create a lifefor him.
We need to find the programs,we need to find things.
He may or may not be able toever hold a job.
(45:49):
Quite honestly, we don't knowwhat that will look like.
So it's really a matter of us,you know, finding a good living
situation for him that maybeprovides a lot of those services
.
We have certainly looked atsome now in the Chicago area.
I will tell you that whilethere are many of them, knowing
what I know, I can tell you thatnot all of them necessarily
(46:12):
have the best care.
And again, that's going back tomy point about don't assume
anything because it looks prettyon some level, because the
reality is I have learned betterfrom people that have told me.
But there are some places thatcould be good choices for him.
And again, one of the uniquechallenges is I would love for
one of those places to befaith-based, to have a Christian
(46:34):
environment.
That may or may not be the case, you know, truthfully, I feel
like I could surrender that ifthe care was good.
But making sure that you knowI'm engaging in the spiritual
life of my son and making surehe's connected to church.
But it even goes one more layerbeyond that, because and this is
what comes up especially when Iwork with churches is like in
(46:55):
my son's case, and I always saythis in these interviews we have
a family of onlys, right?
My son is an only child, I'm anonly child, his mom's an only
child, yes, there's thestep-parents and some extended
family, but the reality is thathe has no siblings, and many
times in families like ours, thesiblings will be the ones to
step in once mom and dad aregone.
(47:15):
Well, in his case he won't havethat.
So at some point in his life,however long he lives, whatever
age this will be, mom and dadjust won't be here anymore.
All of these people who havecared for him early on in his
life are going to be gone on inhis life are going to be gone.
And so the question then becomesand not just for folks like my
son, but for a lot of us who,you know, have kids, or, you
(47:36):
know, if you have an individualwith a disability who is going
to live out their adult yearswithout having a lot of that
same family structure around whowill be their community?
Right, you know who are goingto be the people that speak into
their life, checking on them,wish them a happy birthday and
Merry Christmas, give them a hug, right?
You know, because of my son'schallenges, he doesn't really
(47:57):
have any intentionalrelationships that he's been
able to develop because, youknow, all of his friendships are
just kind of default the kidshe goes to school with or, you
know goes to his programs with,he doesn't have anybody calling
him up on the weekend to hangout, obviously, kind of thing.
(48:17):
So you know, church is reallysomething that can be a lifeline
form to provide that community.
And that's the other thing thatI really impart to those
churches when I work with them,to say, hey, listen, you know
you can be blessing this familynow, but also for years later
and even far beyond, and youmight not realize that there's a
need here, but there is right.
And in the same way, a churchmight step into the lives of
someone who maybe, you know,didn't have any family, let's
say for a holiday, or maybe wasin hospice, or maybe was a
(48:40):
shut-in for medical reasons orwhatever it is.
You know, in that same waychurches need to also develop
those strong relationships withthe families and with the
individuals so that later inlife those things are available,
that lifeline to community thatis so needed.
And so that's really the hopefor me, for my son, is that
we'll find him a greatresidential environment,
(49:02):
something where he can be activeand really be doing a lot of
things out in the community,with support obviously, but also
that he's going to havecommunity intentionally built in
around him as well.
Speaker 1 (49:16):
One last question I always ask is what encouragement
can you give to my listeners?
Speaker 2 (49:26):
Well, the encouragement I would give is
that, regardless of yoursituation and I also want to be
clear because you know my sonhas a specific disability there
are certainly folks that I knowwho have kids that have way more
severe physical health, medicalissues with their kids Not that
(49:47):
my son hasn't, but you know,there are folks out there who I
just look at them and I say Ihave no idea how they do it, but
by the grace of God they are.
You know, the encouragement Igive is that, first of all, know
that your child is always yourchild.
Right, things might not lookthe way you thought they would.
That's okay, still your child,and that child loves you and
(50:08):
needs you.
And's okay, still your child,and that child loves you and
needs you and you know what youneed that child too.
So make sure that you're, firstof all, not missing the
opportunity to be a parent, tohave those enjoyable days and
moments with your child.
Make sure that you're, you know, leaning into them as much as
possible, but also have anawareness that you know again,
(50:31):
you can't do this alone.
If you are a person of faith, Istrongly encourage you to lean
in your faith.
If you are lukewarm about it.
I would say you know, maybe seeif there is someone you want to
talk to about that, or if thereis a church, especially a
church that supports disability,in your area.
If you're not a religious orspiritual person, I understand
that too.
But even my advice there is youmust have community, you must
(50:54):
have people around you, you musthave relationships with people
who understand what you'rewalking through.
So I would always encourage youto reach out to someone.
If you don't know where to start, you can reach out to me Again.
I'm always happy to helpconnect you or see how I can
support you in a variety of ways.
But ultimately, know that youare certainly not alone.
There are lots of resources outthere, but there are also a lot
(51:19):
of people walking in your shoesthat can be a help and a guide
and sometimes just be a shoulderto cry on if you need that, and
sometimes you need that too.
But don't do it aloneAbsolutely not, you know.
I would encourage.
The biggest encouragement Iwould give you is to encourage
you to not do it alone, to makesure that you're reaching out
(51:40):
and developing thoserelationships, because they are
so needed.
Speaker 1 (51:44):
And where can people connect with you?
Speaker 2 (51:51):
connect with you, sure, so I always give this
little disclaimer as well, and Iknow we talked about this
before we started the interview.
But so if you go on to first ofall, I have a website,
johnfellacom it's just mynamecom.
I'm also on all of the socialmedia platforms.
I have a Facebook page, john'sSpecial Needs Blog on Facebook.
I'm on Instagram at Johnunderscore, fellow underscore
(52:12):
one.
I'm on LinkedIn and Exxon underJohn fellow.
But if you go into Google, youcan also search under my old
last name, fela Geller.
And the reason why I have anold last name is because in my
previous marriage I had adifferent last name and now I've
switched back to my originalone.
So if you also just type inJohn Fellegeler, f-e-l-l-e-r,
(52:35):
you will find a ton of stuff atGoogle as well.
Unfortunately, my webmaster,who's a friend of mine, can't
always get all the content up onthe website, but usually on the
social media all the stuff isthere.
But if you really want to see abig breakdown of a lot of my
interviews and things andwriting, definitely look under
my old last name as well, fellaGeller, and so you can search
(52:56):
either way.
Speaker 1 (52:59):
Well, thank you, John Fella, for coming on the show
today.
We greatly appreciate havingyou Absolutely.
Speaker 2 (53:05):
Thanks so much, Dorsey.
Speaker 1 (53:07):
Absolutely Well.
Guys and girls, thank you againfor tuning in and listening.
Please go and check out John'sinformation and his website, and
please like and share thisepisode.
And check out my website atwwwdorseyrussellcom for previous
(53:28):
episodes, or see rosshullcomfor previous episodes, and I'll
even share a link to a previousepisode that connects to this
episode.
And until next time, god bless,bye-bye.
Hello everyone, thanks again for joining me on
another episode of the DorsiRose Show.
Today we have a special guestwith us and his name is Song
Feller.
He is seeking to trademark thetitle of the Swiss Army Knife of
Disability Advocacy advocacymeaning that he is involved with
(00:23):
disability and special needsadvocacy on a variety of levels.
He is the parent of a16-year-old son with autism who
is also non-verbal.
He is a former elementaryeducator for almost 20 years who
(00:48):
transitioned into doingadvocacy on the side several
years ago and now has a growingnational platform through his
personal work and also with hisemployer, zoni and Friends,
which is a global Christiandisability ministry.
(01:09):
John, thank you so much forcoming on the show today.
Absolutely Thank you for havingme.
What is Now?
I usually ask an icebreakerquestion and if you could go
without either music or bookswhich would it be?
Speaker 2 (01:33):
That's a tough question.
Yeah, that's a really toughquestion.
I'm a pretty literate person.
I do love to read.
I do enjoy reading.
Obviously I love to write, butI love to write.
But if I had to give one up, itwould probably be the books,
because I don't know that Icould go without music.
(01:54):
Music is just my motivation andmuse and I'm also a person who
I can't ever just kind of workin silence or sit in silence.
You know, I always need noise,even going to sleep.
We have a white noise thinggoing, so yeah, so I I don't
think I could do it withoutmusic, for sure yeah, I would
probably agree with you on that,when I'm a big music guy as
(02:17):
well.
Speaker 1 (02:18):
What has been your greatest challenge as a special
needs father?
Speaker 2 (02:24):
good question question.
You know I will tell you that,like most parents, when we
started out with our son'sdiagnosis, we really struggled.
We really struggled in thebeginning, you know, first of
all because your naturalinclination as a parent is to
try to fix your child right, tryto find a cure, try to find
some therapy or treatment that'sgoing to do it.
(02:46):
And in most cases, especiallywith something like autism and
developmental disability, youknow you may find things that
are helpful, but there isn't anyone magic bullet that's going
to fix things.
And so I think for me what waschallenging is one to learn to
first of all accept my child ashe was and understand that he
(03:08):
was still my son.
He was still an incredible giftin terms of you know just his
nature and personality and justyou know the joy he kind of
brought to everybody around him,to everybody around him.
But what I also struggled within the beginning too was kind of
finding my role.
Meaning I think what happenswhen disability comes into a
(03:29):
family is that everything getssqueezed and problems that exist
specifically in a marriage kindof get exacerbated.
They get blown up.
So for our family you know myson's mom, my now ex-wife she
was an excellent mom.
She's an excellent specialneeds mom.
She was somebody that couldalways manage the therapies and
(03:50):
the insurance and theappointments and all of that and
that was her gifting and thatwas great and she was a very
type, a personality, so that'swhat she leaned into.
I didn't do that, you, I didn'tdo that.
Most when you have disabilitymost dads at least kind of the
default is, well, I'm just goingto throw myself into my work,
(04:10):
I'm going to work very hard tosupport the family, pay for all
of these things, and that'ssomething that I hear from moms
and dads all over.
And the reality was I couldn'tdo that either, because I was
never the breadwinner.
My wife always made more moneythan me.
So it became an issue of whowas I.
Who was I as a parent, as ahusband, as a father?
(04:31):
You know what kind of definedme.
And over time, what I learnedwas that I was able to lean into
my gifts, which really isadvocacy, but in a bigger sense
networking, communication,relationship building.
Advocacy, but in a bigger sensenetworking, communication,
relationship building.
And so now I can kind of saythat, while my son's mom is
still that detail-orientedperson, I'm more of the big
(04:56):
picture guy.
I'm the one who has therelationships with different
organizations and also otherpeople around the country that I
can ask questions from, getadvice from, get direction from
that type of thing.
So it really came down to.
You know, get advice from, getdirection from that type of
thing, so it really came down tofor me was not just who I was
as a parent, who I was as a guy,because I think it really
brought a lot of things intoquestion and it puts you in such
a pressure cooker that youreally sometimes don't even know
(05:19):
where to turn for support orhelp.
And again, that's another bigthing that I always talk about
is getting support, gettingcommunity around you, building
some intentional relationshipswith people who understand you.
In the beginning we definitelydidn't have that either, and
that's, I think, also why it wasa real struggle.
Speaker 1 (05:35):
Right.
How has your son's disabilityaffecting his choices or
opportunities when it comes toeducation and independence?
Speaker 2 (05:50):
That's huge for him because of the level of nature
of his autism.
You know, he will never trulybe functionally independent.
There's really nothing he cando totally by himself, right,
that doesn't mean that he hasn'tlearned and grown, but you know
, it'll never be something wherehe can do totally by himself.
Right, that doesn't mean thathe hasn't learned and grown, but
, you know, it'll never besomething where he can do it by
himself.
I'll tell you a struggle earlyon, when he was younger, again,
(06:15):
we weren't really sure exactlywhat the best education
environment for him was.
Now, his mom and I both had abackground in teaching, but this
was still our first child andyou know, again, even though I
actually had, most of myexperience was in elementary,
but I did have some preschoolexperience, but you know, I
wasn't, you know, an expert onearly childhood by any means.
So you know, we tried somedifferent things.
(06:37):
We tried some differentenvironments like private
daycare, montessori, whichactually I have a long
background in Montessorieducation, and some of these
different environments had someadvantages.
But the problem was, again,because he didn't develop any
true level of independence wherehe could do some things by
(06:58):
himself or most things byhimself, because he always
needed that support.
What we really found was a lotof the environments that we
thought looked good or presentedas okay, this might be ideal
for him.
The reality is that they didn'thave the right support for him.
And one thing that I oftenalways talk to parents about as
(07:18):
well is, you know, when you'rehaving this conversation about
public school versus privateschool, because you know there's
a default especially where Ilive in the greater Chicago area
, there's kind of a default tosay, well, don't send your kid
to a public school because he'sjust not going to get a good
education.
Well, that's not always thecase, right?
And it's not to say I've workedat some good private schools.
There are some good privateschools out there, but private
(07:40):
schools, at the end of the day,only have so much in terms of
resources.
Essentially, a private schoolis just a small business right,
(08:04):
one-on-one with him all day,just really needed a very
supported and accommodatedcurriculum for his needs.
That's something the publicschool is built for and
technically funded for.
Now again, is every publicschool great?
No, of course, not case.
What we learned pretty quicklywas okay, private school was not
going to be a fit for him.
Where do we go.
(08:31):
So we actually had to make thedecision because we didn't
really like the public schoolswhere we lived at the time.
So we decided to kind of moveheaven and earth, sell our house
, move into a much better townwith a much better school
district.
You know we definitely got somesupport from family along with
that as well, but we were ableto do the transition and he got
into a great school districtthat he actually wound up, you
(08:51):
know, going through all ofelementary school, middle school
and into high school.
However, this last year at hispublic high school, it was
extremely challenging and wefound ourselves almost back to
that same place where we werewhen he was a very young child,
meaning the public school nowcould not meet his needs.
(09:13):
Now, some of that was notnecessarily their fault, because
he kind of moved into thisphase where he started to become
slightly more aggressive, morechallenging to work with.
He had a variety of physicalissues that were kind of
affecting all of that.
So that wasn't all their fault.
But at the same time they werepretty clear with us that they
didn't think they could meet hisneeds either.
(09:34):
So what we thought could workfor, you know, throughout high
school and into.
You know the transition years,the transition program years.
We had to make another choiceand this choice wound up with us
placing our son at aresidential facility as well as
a day school in Wichita, kansas.
So and that's about a, you know, that's about a thousand miles
(09:56):
away from us.
So that was not a first choicebut it was the best choice given
.
You know his needs and thesupport that he required at this
time.
I can tell you that, asdifficult of a decision and
transition as that was,especially for me as a parent, I
can tell you he's thriving andhe's doing great.
But there's so much surrenderyou have to do as a parent in
(10:20):
order to make that choice rightand to put him in a place where,
ultimately, it's for hisgreater good and the best
intentions of everybody in termsof what's right for his life
moving forward.
But it still doesn't make iteasy when you have to make those
choices.
Speaker 1 (10:37):
nonetheless, yeah, absolutely Absolutely.
Now, when you were mentioningabout the schooling system and
some of them not being thatgreat and not having the
resources you know for him care,or they don't have the amount
of special needs kids in theschool system, it's a great
(11:13):
question and here's kind of howI try to explain it.
Speaker 2 (11:20):
So if you attend a public school right and you have
a child with a disability andyour child has an IEP, that IEP
is a legal document and that IEPis going to outline what your
child needs in terms of so manyminutes of, let's say, this form
of therapy.
You know, when it's availableat the school, this many minutes
or maybe a dedicated one-on-onethey need to spend this many
(11:42):
minutes in, let's say, like aresource room or in a dedicated
special ed room, that type ofthing.
The problem is this Manyschools and I have worked at
public schools on the south andwest side of Chicago where even
kids that had the IEPs theschools didn't have the
resources in terms of theydidn't have enough staff so they
couldn't supply a one-on-one.
(12:03):
They didn't have the therapistsin-house.
Sometimes the therapists wouldcome in from, let's say, like
another school setting, but thenif they weren't a person
dedicated to that site, you knowthey weren't there all the time
, like resource room.
(12:26):
But even in that case, when itwasn't staffed properly, they
just couldn't have the studentsthere, you know, as long as
maybe they needed to.
So you know I would talk toparents about really kind of
advocating for themselves,because the reality is is that
by law, the school needs to bemeeting those needs and that's a
legal document.
So, in theory, a person could,you know, pursue legal action,
if they wanted to, against theschool.
In theory, a person could, youknow, pursue legal action, if
(12:46):
they wanted to, against theschool.
Unfortunately, a lot of thefamilies just weren't aware of,
maybe, the totality of theirrights or maybe how to even
engage that process.
It was just well if this iswhat the school says, okay.
And likewise, you know, whenyou have like, where my son
attended school for years, youknow that was a more affluent
setting, so they could affordmore staff, they could afford
(13:07):
more resources, they had all ofthese things right.
And so what it comes down to andsometimes here's how I use the
example, maybe, let's say, fromlike, using like a retail
analogy you know you can havethe same product at two
different stores, right, and Ican go to one store and the
product is, let's say, 25%cheaper.
(13:30):
Well, I'm going to go to whereit's cheaper, probably right,
because why not?
It's the same thing, but why isit more expensive?
Well, yeah, there's markup andthere's all these different
things, but a lot of times italso comes down to the service
you get at a particular store.
Or let's say, you ordersomething online and if it's
more of a seamless process, ifthe customer support is better,
(13:53):
if, let's say, there's some kindof an issue, you know, a lot of
things factor into that and alot of times it's the service
you get, it's the support youget.
So I sometimes will use ananalogy like that to say you can
have the same product in twodifferent places and, yeah, you
probably don't want to have tospend more for the same thing.
(14:14):
But depending on what you'regetting right and you know again
, even, let's say, in theexample of buying a new car,
right, you could purchase thesame car, two different dealers.
But if one dealer is going togive you better service, if they
are going to benefit you morethroughout the lifetime of that
car, making sure that you'retaken care of and you know,
(14:34):
maybe there's discounts or dealsthat they give you along the
way or something like that forbeing a good customer, those are
all things that play in.
And so I use that analogy withpublic school to say you know,
you could send your child to aschool in a challenged area
again like where I was on thesouth or west side of Chicago
could send them to a moreaffluent area in the Chicago
(14:57):
area.
They're still required to getthe same education right.
So on paper it should be thesame, but the problem is some
places have the resources andsome don't.
It's that inequality.
Now, again, by law, you knowthere's X amount of dollars that
you know are supposed to beappropriated to every child and
every special ed student as well.
(15:18):
But again, it's all of thesefringe things.
Right, you know, if you walkinto the school where my son
went to elementary for years andyou walk into some of the
buildings that I've taught in,you can clearly see the
difference, right, and again, itcomes down to the resources and
the materials and the staff andthe training.
So what I, again, alwayscaution parents about too.
(15:40):
And then to go back to thatdiscussion about the private
school, okay, it's also aconversation of you can walk
into an environment that looksgreat.
You know, and, as I tell people, anything looks good on a
website.
You know you can make anythinglook pretty on a website.
Likewise, some of theseenvironments you can walk into
(16:01):
and you know it takes yourbreath away.
But what's the quality of theeducation?
What are the qualifications ofthe staff?
What is the level of theirqualifications?
How much background andexperience they have,
specifically when we're talkingabout disability right, when
we're in an environment likethat, what do they have to offer
?
How are the staff trained?
What materials and resources dothey have?
(16:22):
And in many cases, when it comesto like more of a special ed
environment or working with kidswith disabilities, they don't
really have that because, forthe most part, that's usually
not their focus, unless it istheir focus, unless it's a
school dedicated for that.
If it's not, you know, thenyou're going to have some lack,
and I actually tell people youmay be much better off at your
local public school, even if youdon't think it's a better
(16:44):
education.
The reality is is that don't bedeceived by how something looks
, either on a website or whenyou first walk up to the door.
Yeah, it's great to have a niceenvironment.
We all want that for our kids,but what is the actual quality
of the instruction?
What is actually going onbehind the doors?
What's happening inside thebuilding?
That's what people want to beaware of, and so I often coach
(17:07):
parents, go to schools, talk tothe staff, talk to the
administrators, take a tour, geta feel for it.
Don't make an assumption justbased on maybe you know what
other people have said or maybe,again, what you're just maybe
hearing or seeing online,because that's not always
accurate.
Speaker 1 (17:24):
Sure, how would you advise my listeners and even
people in general, when theyapproach your son, who does have
autism and who is nonverbal, tointeract with him?
Or do they interact, you know,with you and your ex-wife or his
(17:49):
mother, and if they're an egg,to interact with them, or should
?
Speaker 2 (17:57):
they interact with him?
Yeah, and that's a fairquestion too.
You know, the one thing that Ialways you know if new people
are with him, or you knowwhether it's, let's say, in a
social environment or in aschool environment working with
him.
You know, we always encouragepeople to engage with him, right
?
Because the other thing that Ididn't mention is my son is also
(18:18):
nonverbal, so he doesn't speak.
Now, he will utter a few wordsat a time, but you're not having
a conversation with him, right?
But what we remind people isthat that doesn't mean he's
nonverbal, but he does hear,right?
So he is taking the language inand so, even though you're not
getting the output, the realityis that if you're speaking to
(18:40):
him or speaking to him ratherthan at him, kind of a thing
you're trying to engage with him.
He's probably going tounderstand you.
Now, is he always going to dowhat you'd like him to do or go
along with everything?
No, you know, obviously, but atthe same time, you know the
same advice that I would give toanybody working with a person
with a disability cognitive,physical, whatever treat them
(19:02):
like a person, right, we startwith treating them like a person
.
You know, everyone has somedifferent needs.
Everyone has some differentchallenges.
Ok, how about we start bytreating you like a person and
then maybe, if there's somethingyou have a question about,
coaching people up, whether it'sschool staff or people in his
environment?
One thing that we actually usedas a tool that I think was very
(19:36):
valuable was whenever he wouldstart, let's say, a new school
year at his school so like a newclass, and it might be some of
the same kids, but somedifferent kids too, whether it
was in a school environment orat a Sunday school, at church,
what we would do is we wouldactually show up and speak to
the kids and we would explainhey guys, this is who Chris is.
Chris is a little different.
(19:56):
He's not going to communicatelike you.
He's probably going to havemaybe some different behaviors.
But guess what?
Let me tell you all the stuffChris likes.
Let me tell you all the thingshe likes to do.
Let me tell you the things thatyou know make him happy or put
a smile on his face.
If you can engage him that way,then great.
You know, you've made a newfriend with him, and I know he
(20:16):
would very much appreciate that.
So a lot of it also, too, iskind of getting out in front of
it.
I know that there is a fairamount of shame and stigma with
parents when they have a childwith.
That has challenges and youknow, a lot of times it's okay.
(20:37):
Well, you know, some familiesare more um sensitive about, you
know them kind of being intheir own shelter environment.
Some families do want themincluded with everything and and
in the mainstream classroom andall that and that's great, um,
but at the same time time getout in front of it and really
embrace, you know, the kids andthe environment and the staff.
So they know one, you know alittle bit more about who he is.
(20:57):
But two, they also know thatthey've got a line of
communication to you as parentsand this way then you know that
just kind of helps things laterin the year.
If something comes up or ifthere's a question about
something you know, obviouslythey know that you're available
for them.
Speaker 1 (21:12):
Going off on what you said there with you know the
parents.
You know growing up for my ownself, you know my parents, you
know allowed me to go out andyou know.
You know you know go out withfriends, have my own.
You know.
Go out with the baseball team,and you know, play basketball
(21:33):
and football and whatever else.
You know I could do and youknow figure out for myself what
I could and could not, could andcould not do.
Speaker 2 (21:44):
Yeah, and likewise with my son, you know, for
example, he doesn't really playsports because he just doesn't
have the coordination for it,but he likes watching things on
TV, like he likes watchingfootball with me, he'll watch
basketball, kind of thing.
And again, it's tough for someparents, especially when it's
like dads who have like a sonwith autism, because a lot of
times they have an expectationdads who have like a son with
(22:05):
autism, because a lot of timesthey have an expectation Boy.
I really thought that my kidwould play this sport, or we'd
go fishing or hunting orwhatever we do, and the reality
is, is that, okay, some thingsmight not happen, but that
doesn't mean they can't still bea part of it on some level.
Like you know, we used to havea basketball hoop in our
driveway at the house he grew upin, and you know I'd go out
(22:29):
there with him and I'd shoot thebasket and or shoot the ball at
the basket.
Whether I made it or not, hethought it was fun or hilarious,
he'd clap, he'd, you know,laugh about it, kind of thing,
and then he would try some of ittoo, and then we'd pass the
ball around.
So, whatever you can do, dothat Right, because, again, it
might not look the way youexpect it to, but that doesn't
mean that that person stop beingyour child, that they don't
(22:50):
enjoy those things, that theyjust don't like that
togetherness Right.
And that's the thing that Ireally appreciated about you
know, all those early years withmy son was I really just
treated him like any other kidand I knew there were some
things he liked or didn't, butit was about spending the time,
right, you spend the time withthem and then obviously they
know you, you love them.
Speaker 1 (23:10):
Yeah, my parents did the same thing, you know, for me
.
They, you know they allowed meto go out and whatnot, and I'm
grateful for that.
You know they, like you saidearlier, they weren't the type
of people that put me in abubble and, you know, put me off
to the side and said, no, he'snot going to be able to do
anything in this world.
Yeah, yeah, definitely Goingback to your son and being
(23:35):
nonverbal.
How do you communicate with him?
What is that experience like?
Speaker 2 (23:43):
So the kind of default that we have in terms of
that communication, you know,on the one hand, as parents, you
know, it just kind of almostbecomes that sixth sense of well
, I know what he wants, kind ofa thing, just because I've seen
him ask for this a million times.
I know his body language, Iknow what he's looking at, I
(24:05):
know what he's kind of searchingfor, language, I know what he's
looking at, I know what he'skind of searching for.
You know, early on a lot of histherapists, especially ABA
therapists, would teach him howto point at something that he
wanted, a preferred item, whichhe will still do, and he knows
some basic signing, like when hewants more of something, or,
you know, to let you know whathe's looking for.
He does have a communicationdevice.
So he has an iPad that has theparticular app we use is called
(24:29):
Touch Chat.
So it's just a communicationapp.
I know there's a couple ofdifferent other ones out there
and it just has.
You know the app itself hasjust different windows and
pictures kind of thing, and soyou know it's essentially just
like, you know, the Pax PictureExchange.
It's OK, what would you like toeat today?
And you go to the page forrestaurants.
I want to eat here, I want toeat there, I would like fries, I
(24:51):
would like a burger.
Okay, so he will do that, Iwill tell you.
That's challenging too, becausethere are times when he just
gets bored of having to talk toyou on there, and a lot of times
either he'll just push anybutton just to make you
satisfied or think he'ssatisfying you.
But with some of his therapists, that can really get him to
focus.
The great thing is that notonly can they get a lot of
(25:13):
output out of him, but he canactually communicate.
You know how he's feeling thatday, or a little bit about you,
know what he would like to do orwhat he liked about something.
So we will get some of that.
I know one therapist he's hadthat's really good will actually
read like a simple chapter bookto him and again, it's
(25:34):
something definitely lower thanhis level, but it's something he
can grasp.
And he's able to actuallyanswer questions through his
communication device.
He's able to spell out somebasic responses.
So that's awesome too.
So it's and it's a challenge asa parent too, because, again,
you're so used to just kind ofassuming what your child wants
(25:54):
or jumping in and saying okay, Iknow you're going for that, so
let me help you, as opposed tochallenging him more to say okay
, use your words, tell me.
You know, maybe not literallyhis words, but you know he can
express himself in somedifferent ways.
So it's always a challenge as aparent to you know, maybe not
literally his words, but youknow he can express himself in
some different ways.
So it's always a challenge as aparent to you know, make sure
that you're trying to pull thatout of him.
You know, but you know it isone of those things many times
(26:16):
where it's like well, I just, Ijust know him and you know it
also depends on your day, right?
If it's, if it's maybe been acrazier day, okay, well, we're
just going to fill in some ofthe gaps for you.
Speaker 1 (26:35):
But if you have more time and more space to do it.
You know it's a great teachingopportunity.
It's a great time to work withthem on some of those skills.
Sure, how did you go from beinga teacher to being an advocate
for people with disabilities?
Speaker 2 (26:46):
So my road from educator into advocate is a
pretty interesting one.
You know, as I kind ofexplained at the beginning of
our conversation, I reallystarted out just being another
lost, confused parent, didn'treally have a lot of resources,
didn't have a lot of people totalk to, and I figured out that
I needed community.
You know, we didn't have a lotof friends who had kids with
(27:09):
disabilities.
We didn't really have a lot ofpeople to lean into and
especially as a guy, you know,although I had guy friends that
you know maybe were married orhad kids, they didn't understand
what I was going through.
And so it was kind of a journeyfor me that really started out,
one to kind of developcommunity.
So we had that support as afamily and some of it started
(27:37):
out very small.
For example, I started a group,a support group for special
needs dads right in ourcommunity right, we would meet
at this restaurant every monthand I started out with another
guy in the area and took time tokind of get going.
But we developed traction, westill meet and it's been going
on for several years.
So it was small things likethat.
But then I also had this Ialways had a desire to write.
(28:01):
I always wanted to write andbecome a writer in some capacity
, kind of as a passion of mine,and so the organization that I
currently work for, which isJohnny and Friends one of the
outreaches they had over theyears that we would participate
in is a family retreat, which isa week-long retreat for
(28:23):
families of disability.
There was a retreat center inMichigan.
We still use it today.
My son went for several yearswhen I was married to his mom,
and he's been back since with me.
But at this retreat we'd meetall parents of disability from
all over the Midwest basically.
But there was a mom who Iconnected with, who did some
(28:45):
writing, and I told herconnected with who did some
writing.
And you know, I told her, youknow I'm looking for some
outlets, can you help me out?
So she was writing for a verysmall disability ministry
organization in SoutheastWisconsin and she said listen,
we're always looking for morewriters, more bloggers.
Specifically, be great to havea dad, be great to have a guy.
Why don't you try it?
So I tried it and I wasn't sureabout it at first because it
(29:08):
wasn't something I had ever donebefore.
I started doing it for aboutsix months, really liked it.
And then that organization gotmerged with a bigger national
organization called Key Ministry, again also for disabilities.
They're based out of Ohio butthey have more of a national
focus right and nationaloutreach.
So I got taken on as a writerby them and I continued to write
(29:28):
and, you know, got a lot moreexposure.
They do a yearly conference Igot to speak at.
There were other organizationsthat asked me to speak at
conferences as well, speaking tomy experience as a parent.
And then I started to do, youknow certainly, a bunch of
podcast interviews like this andactually contribute to to
couple of friends' book projectsas well.
So I started kind of gettingmomentum again, really just
(29:54):
wanting to look for just somevessel, some way to just kind of
share my story and to justshare what I had learned along
the way, kind of a thing, andjust kind of have a platform
like that.
And through all of that workagain, I've been able to develop
relationships with a lot ofgreat advocates and people who
(30:14):
are running, you know,nonprofits and ministries, all
disability focused, all over thecountry.
And again because of that, youknow, and certainly in my
current day job, which againJohnny and Friends is a global
Christian disability ministry,but we do a variety of outreach
locally, you know, anddomestically as well.
So in my role there again I'mable to really lean into the
(30:35):
resources and the relationshipsI've developed to be able to
help families, to equip them orget them the support they need.
Or, you know, we get all kindsof random questions from
families of ours at the officeall the time and usually I'm the
guy to answer them because I'mthe one who kind of has a feel
for all these things kind of allover.
So it really started out asagain a desire to build and just
(30:57):
have community period and I gotthat.
But then I got so much morebecause, you know, now I'm in a
place where you know if I needto talk to someone.
You know there are guys in myarea I could certainly call and
talk to for sure, but sometimes,depending on the question, it
might be somebody out of stateor on the other side of the
country, and that's fine too.
(31:19):
So that is a big difference asopposed to what I had before,
which was feeling like Iliterally had no one, and that's
a very dark, lonely place to be, especially when you have a
child with a disability, andespecially when your life and
marriage goes through somepretty rocky places, like ours
did.
And so, as I really emphasizein terms of advice, you cannot
(31:43):
do this without community.
You must have support, you musthave relationships.
If you don't have them, findthem.
If you need help, I'm alwayshappy to help anybody do that.
But you can't do it alone,that's for sure.
Speaker 1 (31:57):
And just to give a little insight into Goni and
Friends Goni Erickson-Toddler isthe woman that started that
ministry.
Speaker 2 (32:10):
Yes, she has an incredible story For those who
don't know.
She became a quadriplegic atthe age of 17, all the way back
in 1967.
She had a diving accident.
She actually grew up inBaltimore.
During the summer she took adive into Chesapeake Bay with
shallow water.
She bonked her head and shetechnically, she broke her neck.
(32:31):
Now they were able to save herlife, but again she became quite
a pelagic instantly and soshe's been a wheelchair user
that whole time and she hasreally used her experience which
, if anybody is interested inseeing her story and what that's
all about, you can actuallyfind the movie on YouTube where
(32:51):
she actually plays herself.
It's from the early 80s, Ithink.
So, yeah, it's like amade-for-TV movie, but it's out
there, it's free, you can watchit.
But you know, in the early daysshe was struggling, she was
frustrated, she was angry.
You know this was not what shewanted for her life and you know
this was not what she wantedfor her life and you know,
(33:11):
famously she would often remarkabout how she would have taken
her own life.
But when you have no use ofyour arms and legs it's hard to
do that kind of thing.
So her prayer became God, ifyou're not going to let me die,
then teach me how to live.
And so through that shedeveloped all of these outlets.
One was painting, which isremarkable and she still does
this today.
She learned how to paint with abrush in her mouth.
(33:32):
She does wonderful justpaintings of, you know, a lot of
nature, scenery, animals, thattype of thing.
It's just incredible stuff.
And then that got her on anational scale, on a national
level in terms of awareness,people started to write her
letters.
Level in terms of awareness,people started to write her
letters.
And you know, she kind ofdeveloped this ministry just
kind of around the kitchen tablekind of thing, and got friends
(33:53):
Johnny and friends to help heranswer letters and, you know,
communicate with people.
And then over time the ministrygrew, you know, over 40 years.
So now we're in about 30countries around the world.
We're on, you know, fivecontinents.
We do a variety of outreachwith families.
Again, I mentioned retreats.
We do marriage getaways formoms and dads.
(34:13):
We do warrior getaways forveterans who are affected by
disability.
We have our Wheels for theWorld Ministry, which is a
global wheelchair ministry wherewe deliver wheelchairs around
the world.
I actually just had theopportunity to come back from a
trip we did to Chile and deliverwheelchairs there.
So that was kind of cool.
So it's a wonderful outreach.
And, specifically, my jobactually is that I train
(34:37):
churches of any size and anydenomination on how to welcome
people with disabilities.
I help them to develop programs, curriculum, Sunday school,
whatever they're needing.
I'm kind of the consultant thathelps them with developing
those things in theircongregations, should they need
them.
So that's also a big part ofour outreach and that's
(34:59):
something that I love doing.
Speaker 1 (35:04):
we both know that the disability is not only a
physical disability but it couldalso be, you know, inside as
well and you know, affecting thebrain and whatnot.
(35:24):
So how do, like you just said,do, how should you know, welcome
people with disabilities andwhat?
What does that look like?
Because I I've traveled arounda lot and you know, giving my
testimony at several churchesand you know, for the most part
(35:47):
I don't see and again, like Isaid, a lot of some of the
disabilities are not onlyphysical, but for the most part
I don't see a lot of people withphysical disabilities in the
searches today.
Speaker 2 (36:07):
Yeah, and it's a very interesting thing because you
know, when I talk, for example,when I train churches and you
know I give them you knoweveryone likes numbers and stats
because you know they want tounderstand what this all is
(36:30):
identifies individuals withdisabilities, that's all
disabilities as the largestminority in the world right now,
it's over 1 billion people, Ithink it's so, it's like it's
over 1 billion, it's like one infive people around the world
have a form of a disability,right, and that could be a
physical disability, cognitive,both, you know, type of a thing.
But the challenge is, is thatright now you're dealing with,
you know, first of all,certainly individuals that have
(36:51):
physical disabilities, and thatcould be, let's say, someone
who's a wheelchair user of anyage, kind of a thing.
Or certainly, as people getolder, you know, and they, you
know, have a need for more,let's say, assistance, let's say
getting in and out of abuilding, type of a thing.
But you know, then you get intoagain the cognitive
disabilities where, again, likefor example, in my son's case,
(37:12):
if you saw him walking down thestreet, you probably wouldn't
think there was anythingdifferent about him, and then,
within about 10 seconds oftrying to engage with him, you
figure out, okay, well, there'ssomething here.
But even going beyond that, youknow right now what we're seeing
and certainly I think there'sprobably more a lens on it
coming out of COVID and all ofthe you know, the ways we were
(37:33):
restricted from interacting, youknow, is the silent
disabilities, like yourdepression, your anxiety, you
know, and all of those thingsthat you know cause people to
really suffer on the insideagain looking perfectly normal
on the outside.
And again, in some cases itcould be a thing where, okay,
(37:56):
you know, somebody with ADHDmight have a little hard time
focusing on a conversation, butif you have a person with severe
depression, you know you couldhave someone who might really be
on the inside screaming forhelp, but, you know, on the
outside, look perfectly puttogether.
So how do you even know whatthey're struggling with?
And then, of course, how do yousupport them?
(38:16):
So that's why, especially whenI work with churches, you know,
again, it's a matter of, yes,you want your building to be ADA
, you know, compliant, and allof that.
You want to make sure peoplecan get in and out of the
building and things like that.
But you know, it's also justthe heart you have, it's the
awareness of okay, you don'tknow what someone has or their
(38:37):
diagnosis or how they're goingto present when they walk
through the door.
So you don't want to makeassumptions Again, you want to
go back to that idea of treatingpeople like people, right, and
then you know if you think about, on the one hand, you know the
family, let's say with a childwith autism, who you know, they
really want a place to be ableto attend a service on Sunday,
but their child needs extra helpor support or a buddy.
(38:59):
Okay, there's that.
But if you really are doing itwell and again leaning back into
that idea of community, wherecommunity is so needed and
important, if you have a person,let's say, dealing with severe
anxiety, depression or somethingalong those lines, and they
come into that congregation,they come into that community.
Well, they may not just comeright out and tell you oh, by
(39:22):
the way, I suffer with severedepression.
They're going to want todevelop a relationship with
someone or several people andmaybe they get invited into a
social group, small group ofBible study or you know
whatever's going on in the lifeof the church, and then they
develop enough of acomfortability to be able to
share things on a more personallevel.
(39:43):
But if that acceptance isn'tthere from the minute someone
walks in the door, and again youknow I'm using the church
example because that's my job.
But in the same way, whetherwe're talking about any
environment, workplace, school,whatever, just you go to a
friend's house for a party andsomeone you've never met comes
in the door, well, you have noidea of exactly, maybe, what's
(40:07):
going on for them.
So you always want to start outwith treating people as people,
not making assumptions andreally just, you know, kind of
allowing them the kind of safety, the emotional safety, to just
feel at home, feel at peace.
And as things are shared, asthings come up, then you know if
(40:29):
you feel you can support them,great.
If not, ideally there issomeone you know that can do
that.
But we have to.
When we're thinking ofdisability, we have to get
beyond this idea that it's justalways that person in a
wheelchair or that person whereit's so obvious physically you
know there could be someonetruly suffering that looks like
they're perfectly well puttogether.
(40:51):
So again, don't make anassumption about that and while
you want to respect their space,at the same time always be
available and always be open andalways be welcoming, because
that really means so much,certainly to families like me
with a child with a disability,or to, you know, I know a lot of
people, I know if they are also, you know, struggling with
(41:12):
things.
Speaker 1 (41:14):
As we get ready to wrap up here, one of the other
questions I have was how hasfaith played a role in your life
, along with your son's life,during this time, along with
your son's life?
Speaker 2 (41:28):
during this time.
So when I do give advice and Iknow I mentioned the community
thing, which is a big piece ofadvice for me but usually when I
give advice I give it in theform of number one little a and
number one little b.
So number one little a is myfaith.
I am nothing without myChristian faith.
When my son was born I was nota believer.
(41:50):
You know his mom.
I was actually raised Catholic.
My ex-wife was raised Jewish.
We were kind of there's, I guess, a few different ways you can
define it kind of secularlyspiritual, new age spiritual.
You know we certainly believedin God, but you know we weren't
interested in belonging to achurch, a temple or anything.
And then, as things developedwith my son's disability and of
(42:13):
course things got more squeezedin the marriage and the family,
we at least knew that we neededa community.
But even then it really wasn'tuntil we truly came to faith in
Jesus that things really startedto change.
And I know for me that happenedjust attending a men's Bible
study that a friend had referredme to, and my life was changed
(42:36):
forever literally in one night.
That doesn't mean that my soninstantaneously got healed.
It doesn't mean that theproblems in my marriage just
went away.
And all of that, and certainlyalthough my marriage was saved
then, his mom and I did wind upgetting divorced years later,
and I do have the blessing ofbeing remarried.
So that's great.
(42:56):
But the reality is that it's notthat life automatically becomes
better.
It's just that you know thathe's walking with you.
He's walking with you,supporting you, he's guiding you
, and I never felt alone afterthat.
And so, even with all the upsand downs with my son's
upbringing and raising him andall the decisions we've had to
make even though things in myfirst marriage didn't
(43:20):
necessarily work out the way Iwould have liked them to, even
though there maybe are a lot ofthings I wish could have gone
differently the reality is thathe's always been with me.
He has blessed me along the way.
I have learned to appreciate notjust what I have but the
experiences I've had, becausethe reality is, even with
disability, I can look at all ofthe incredible people I've met,
(43:45):
all of the families, all theparents, all the friendships I
never would have had if I didn'twalk this path because of my
child's disability, and that'sthe true blessing there.
So I count it all as joy, asScripture says, because at the
end of the day there are thingsthat I never would have had had
(44:05):
I not walked this path.
And that doesn't make it anyeasier.
But knowing that you have thatrelationship with Christ, that
does take certainly a big loadoff of your shoulders.
Because then you realize at theend of the day, it's not about
you, it's not about anythingyou're doing in your power.
You can surrender it to him andall he has for you to do is be
(44:27):
faithful and follow.
And I've certainly tried to dothat, you know, since then, for
sure.
Speaker 1 (44:33):
And then, what is the ?
What does the future look likefor your son?
Speaker 2 (44:43):
So right now he is at the school environment in
Wichita, as I mentioned.
That's going to be where he'llbe for the foreseeable future,
at least for maybe the nextcouple of years when he ages.
(45:05):
Out of that, his mom and I havebeen having conversations about
his living situation and alsoabout what his life is going to
be like.
One of the things that parentswho don't raise a child with a
disability don't necessarily getis when you have a child who
truly isn't going to beindependent.
It's not that you're coachingthem up through their life to
(45:28):
get them into college.
So it's not that you'recoaching them up through their
life to get them into college.
Okay, they're done with college.
They graduated.
Now they're going on towhatever life they're going to
do, whatever job they're goingto do, have a family, et cetera.
In my son's case, he's notgoing to have any of that and we
really need to create a lifefor him.
We need to find the programs,we need to find things.
He may or may not be able toever hold a job.
(45:49):
Quite honestly, we don't knowwhat that will look like.
So it's really a matter of us,you know, finding a good living
situation for him that maybeprovides a lot of those services
.
We have certainly looked atsome now in the Chicago area.
I will tell you that whilethere are many of them, knowing
what I know, I can tell you thatnot all of them necessarily
(46:12):
have the best care.
And again, that's going back tomy point about don't assume
anything because it looks prettyon some level, because the
reality is I have learned betterfrom people that have told me.
But there are some places thatcould be good choices for him.
And again, one of the uniquechallenges is I would love for
one of those places to befaith-based, to have a Christian
(46:34):
environment.
That may or may not be the case, you know, truthfully, I feel
like I could surrender that ifthe care was good.
But making sure that you knowI'm engaging in the spiritual
life of my son and making surehe's connected to church.
But it even goes one more layerbeyond that, because and this is
what comes up especially when Iwork with churches is like in
(46:55):
my son's case, and I always saythis in these interviews we have
a family of onlys, right?
My son is an only child, I'm anonly child, his mom's an only
child, yes, there's thestep-parents and some extended
family, but the reality is thathe has no siblings, and many
times in families like ours, thesiblings will be the ones to
step in once mom and dad aregone.
(47:15):
Well, in his case he won't havethat.
So at some point in his life,however long he lives, whatever
age this will be, mom and dadjust won't be here anymore.
All of these people who havecared for him early on in his
life are going to be gone on inhis life are going to be gone.
And so the question then becomesand not just for folks like my
son, but for a lot of us who,you know, have kids, or, you
(47:36):
know, if you have an individualwith a disability who is going
to live out their adult yearswithout having a lot of that
same family structure around whowill be their community?
Right, you know who are goingto be the people that speak into
their life, checking on them,wish them a happy birthday and
Merry Christmas, give them a hug, right?
You know, because of my son'schallenges, he doesn't really
(47:57):
have any intentionalrelationships that he's been
able to develop because, youknow, all of his friendships are
just kind of default the kidshe goes to school with or, you
know goes to his programs with,he doesn't have anybody calling
him up on the weekend to hangout, obviously, kind of thing.
(48:17):
So you know, church is reallysomething that can be a lifeline
form to provide that community.
And that's the other thing thatI really impart to those
churches when I work with them,to say, hey, listen, you know
you can be blessing this familynow, but also for years later
and even far beyond, and youmight not realize that there's a
need here, but there is right.
And in the same way, a churchmight step into the lives of
someone who maybe, you know,didn't have any family, let's
say for a holiday, or maybe wasin hospice, or maybe was a
(48:40):
shut-in for medical reasons orwhatever it is.
You know, in that same waychurches need to also develop
those strong relationships withthe families and with the
individuals so that later inlife those things are available,
that lifeline to community thatis so needed.
And so that's really the hopefor me, for my son, is that
we'll find him a greatresidential environment,
(49:02):
something where he can be activeand really be doing a lot of
things out in the community,with support obviously, but also
that he's going to havecommunity intentionally built in
around him as well.
Speaker 1 (49:16):
One last question I always ask is what encouragement
can you give to my listeners?
Speaker 2 (49:26):
Well, the encouragement I would give is
that, regardless of yoursituation and I also want to be
clear because you know my sonhas a specific disability there
are certainly folks that I knowwho have kids that have way more
severe physical health, medicalissues with their kids Not that
(49:47):
my son hasn't, but you know,there are folks out there who I
just look at them and I say Ihave no idea how they do it, but
by the grace of God they are.
You know, the encouragement Igive is that, first of all, know
that your child is always yourchild.
Right, things might not lookthe way you thought they would.
That's okay, still your child,and that child loves you and
(50:08):
needs you.
And's okay, still your child,and that child loves you and
needs you and you know what youneed that child too.
So make sure that you're, firstof all, not missing the
opportunity to be a parent, tohave those enjoyable days and
moments with your child.
Make sure that you're, you know, leaning into them as much as
possible, but also have anawareness that you know again,
(50:31):
you can't do this alone.
If you are a person of faith, Istrongly encourage you to lean
in your faith.
If you are lukewarm about it.
I would say you know, maybe seeif there is someone you want to
talk to about that, or if thereis a church, especially a
church that supports disability,in your area.
If you're not a religious orspiritual person, I understand
that too.
But even my advice there is youmust have community, you must
(50:54):
have people around you, you musthave relationships with people
who understand what you'rewalking through.
So I would always encourage youto reach out to someone.
If you don't know where to start, you can reach out to me Again.
I'm always happy to helpconnect you or see how I can
support you in a variety of ways.
But ultimately, know that youare certainly not alone.
There are lots of resources outthere, but there are also a lot
(51:19):
of people walking in your shoesthat can be a help and a guide
and sometimes just be a shoulderto cry on if you need that, and
sometimes you need that too.
But don't do it aloneAbsolutely not, you know.
I would encourage.
The biggest encouragement Iwould give you is to encourage
you to not do it alone, to makesure that you're reaching out
(51:40):
and developing thoserelationships, because they are
so needed.
Speaker 1 (51:44):
And where can people connect with you?
Speaker 2 (51:51):
connect with you, sure, so I always give this
little disclaimer as well, and Iknow we talked about this
before we started the interview.
But so if you go on to first ofall, I have a website,
johnfellacom it's just mynamecom.
I'm also on all of the socialmedia platforms.
I have a Facebook page, john'sSpecial Needs Blog on Facebook.
I'm on Instagram at Johnunderscore, fellow underscore
(52:12):
one.
I'm on LinkedIn and Exxon underJohn fellow.
But if you go into Google, youcan also search under my old
last name, fela Geller.
And the reason why I have anold last name is because in my
previous marriage I had adifferent last name and now I've
switched back to my originalone.
So if you also just type inJohn Fellegeler, f-e-l-l-e-r,
(52:35):
you will find a ton of stuff atGoogle as well.
Unfortunately, my webmaster,who's a friend of mine, can't
always get all the content up onthe website, but usually on the
social media all the stuff isthere.
But if you really want to see abig breakdown of a lot of my
interviews and things andwriting, definitely look under
my old last name as well, fellaGeller, and so you can search
(52:56):
either way.
Speaker 1 (52:59):
Well, thank you, John Fella, for coming on the show
today.
We greatly appreciate havingyou Absolutely.
Speaker 2 (53:05):
Thanks so much, Dorsey.
Speaker 1 (53:07):
Absolutely Well.
Guys and girls, thank you againfor tuning in and listening.
Please go and check out John'sinformation and his website, and
please like and share thisepisode.
And check out my website atwwwdorseyrussellcom for previous
(53:28):
episodes, or see rosshullcomfor previous episodes, and I'll
even share a link to a previousepisode that connects to this
episode.
And until next time, god bless,bye-bye.
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