September 9, 2025 • 23 mins
When Michael Vassar’s daughter was diagnosed with a rare genetic disorder and later autism, his family’s journey took an unexpected turn. In this candid conversation, Michael shares how “Welcome to Holland,” Emily Perl Kingsley’s well-known poem, became a touchstone for reframing expectations — and finding unexpected beauty on a different path.
We talk about the early shock of diagnosis, the long waits for services, the power of parent-to-parent connection, and the little victories that make the hardest days worth it. Michael also brings insight from his work in autism care technology, offering practical tips for families navigating the post-diagnosis gap.
Whether you’re just beginning this journey or years down the road, this episode is a reminder that while the destination may not be what you first imagined, it can still be deeply meaningful — and you don’t have to walk it alone.
Inspired by Emily Perl Kingsley’s poem “Welcome to Holland.”
Read Emily Perl Kingsley’s full poem, “Welcome to Holland,” here: https://www.emilyperlkingsley.com/welcome-to-holland
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hi everyone.
Welcome to Around the Spectrum,where parents, pros and those
in between pull up a chair forhonest conversations, grounded
guidance and real stories aboutraising and supporting autistic
kids.
I'm your host, wendy Manganera.
As a parent, marketing leaderand longtime autism ally, I know
how overwhelming and isolatingthis journey can feel.
(00:21):
That's why we're here, becausewhen we sit at the same table,
we understand more and judgeless.
On today's episode of Around theSpectrum, we're pulling up a
chair with another parentwalking this journey, not with a
perfect plan, but with livedexperience and a whole lot of
horror.
You'll hear how they navigateddiagnosis services and the
in-between moments no oneprepares you for.
(00:42):
Today we are on with MichaelVassar, who is a dad, husband
and advocate for familiesraising children with
disabilities.
He and his wife, kim have spentthe past eight years working in
the children's disabilitiescommunity, work that began when
their first daughter was born.
Mike brings a unique dualperspective as a parent
navigating the everydayrealities of autism and as a
(01:04):
professional in the technologyspace, where he helps provide
software tools that supportautism care providers.
This combination of livedexperience and industry insight
has given him a front row seatto both the challenges and the
incredible joys that come withthe autism journey.
Welcome, mike.
Speaker 2 (01:23):
Hi Wendy, thanks for having me Very excited to have
this discussion with you andtalk about my the autism journey
.
Welcome, mike.
Hi Wendy, thanks for having meVery excited to have this
discussion with you and talkabout my family's journey.
Speaker 1 (01:30):
I always like to pull the shade back a little and say
that Mike and I know each otherfrom previous experience.
When I was doing the show Ithought I've got to get back in
touch with him.
We both work in the autismarena and he seemed like a great
guest to have on because he hassuch a wonderful lived
experience.
Let's start with your journey.
Can you share a little bitabout your daughter, her
(01:52):
diagnosis and how that momentshaped you as both a parent and
a professional?
Speaker 2 (01:58):
Absolutely so.
My oldest daughter she'll beeight years old in about a month
my oldest daughter she'll beeight years old in about a month
she was diagnosed with a veryrare genetic disorder called
Bainbridge-Roper.
She was about 18 months old.
She ended up getting an autismdiagnosis a few years later.
(02:20):
Early on, we noticeddevelopmental delays and we had
a neurologist visits.
She got MRI scans.
We were doing physical therapy,occupational therapy, but it
wasn't until we had geneticsequencing.
We got a real diagnosis, whichwas both a relief to have some
(02:45):
answers but also quite scarybecause we didn't know anything
about Bainbridge Ropers and whatthat meant.
I could talk a little bit aboutwhat that journey was like, but
that is a little bit aboutKylie.
Speaker 1 (02:58):
Thank you.
As a parent, when you go in forone thing and then you get a
diagnosis that you don't expect,it's a surreal moment because
you're like, but that's not whyI'm here.
Speaker 2 (03:06):
She was our first daughter so I didn't have a lot
to compare it to.
We would bring her into thepediatrician.
My wife had an intuitionthere's something that's not
right.
But the pediatrician keptsaying she's a little bit
delayed, but there's nothing toworry about.
I was almost like head in thesand, like everything will work
out.
But my wife was pushing like weneed to get more testing done.
(03:28):
Things like rolling over.
She wasn't rolling over at thisstage, wasn't sitting up when
we pick her up at daycare.
She didn't show any type oflike awareness that mom and dad
is here.
She wouldn't make eye contactwith those type of things.
She wouldn't make eye contactwith those type of things.
Certain people in our life kindof were like maybe you should
(03:48):
get this tested and get a closerlook at what's going on when we
end up getting to the point ofdoing the genetic sequencing.
I remember sitting in thatdoctor's office and she made a
statement along the lines oftoday's, the first day of the
rest of your life.
It hit me immediately.
I'm like, oh my God, she foundsomething.
(04:09):
She said Bainbridge Ropers,very rare genetic disorder,
number 200 in the world, andthat was super scary.
But it also became very clearthat the mission, the family,
everything changed at thatmoment, both for the good and
the bad.
Speaker 1 (04:29):
There is something that changes instantly when you
do that full circle and go okay,I have to do things differently
.
Now, In your case, which Ithink is amazing, you work in
tech.
That's how we met originally Iwas working in ABA and Mike was
working in tech.
We had a chance to get to knoweach other.
Then You've said your careerand your role as a dad have run
(04:50):
parallel.
What does that mean or what didthat look like during that time
?
Speaker 2 (05:08):
2018.
Central Reach is the electronichealth record for autism
organizations that helps runtheir day-to-day business.
I didn't know anything aboutautism at that time.
I didn't even know what ABAstood for, but I had a friend
who was a BCBA working atCentral Reach and said you
should come.
We have open sales positions andI was looking to make a change
at that point, so I ended uptaking that job, and it's just
(05:29):
one of those moments where theuniverse puts you in the right
place at the right time.
I was surrounded by cliniciansspeech pathologists,
occupational therapists, BCBAsand they were a huge part of
assessing Kylie and helping usunderstand the path forward with
(05:53):
her delays and where to findtherapies.
So that was the moment where Ihad taken a sales job, but it
ended up intersecting with therest of my life.
I was in the right place at theright time and ever since then,
I've devoted my professionallife to helping care providers
(06:13):
in the way that I can, which isfinding useful technologies that
give access to care and makethe lives of clinicians and the
back office folks easier so theycan focus on their clients.
Speaker 1 (06:29):
When my son was diagnosed, I was working with
adults with disabilities runningprograms, but I had never seen
the other side diagnose us whenthey were young, but I really
had never done work with earlylearning.
It's very different than whensomebody already comes
pre-diagnosed as an adult andyou're helping them through a
different set of systems.
(06:50):
I do think it did surround mewith the right support, Even
though I didn't work directly inthat field.
Everybody I knew knew somebodyand was really helpful, so that
was a blessing in disguise.
We've talked about this andit's a huge reality If you are a
parent looking for services andit's not all services, but
certainly in the ABA field,which is probably one of the
(07:10):
first things that theneurologist pediatricians if you
have a diagnosis of autism,they may suggest ABA.
It's a very common thingbecause it does work.
But there are more children onthe spectrum than we have
services and BCBAs and that's areality, and so there tends to
be wait lists.
Sometimes you even get an RBTand they leave and then you have
(07:31):
another wait list.
So one of the things that youcan help with is what the gap
looks like of signing up forservice and getting service
between your child's diagnosisand starting, because it's a
reality that you're not going tocall and get an instant
appointment.
So, as a parent, what can theydo?
Speaker 2 (07:50):
Yeah, so you really have to be a self-advocate.
We had a very similarexperience.
We weren't given a timeline.
It was very open-ended but wewere given, when we got the
diagnosis, a list of localorganizations to reach out to,
and every single one of themsaid that they didn't have
(08:11):
availability but we would be puton a wait list.
And my frustration at thatpoint was okay, we'll go through
this intake process, we'll getyou all the documentation, all
the information that you need.
That I can upfront, but therewas just no communication to me
(08:32):
or my wife about updates.
Luckily, my wife and myself comefrom the industry side, so we
understand what ABA is, but fora lot of families that have no
idea what they're about to getinto, it's really important for
these organizations to providesome knowledge of what the
(08:53):
science is of ABA.
There's a lot that families cando on their own as they wait.
There's just interventions andtactics that families can have
that they don't necessarily needa clinician right.
They just need to be armed withthe information of things that
they can do on their own.
And that was my frustration thelack of knowledge.
(09:15):
And I would have to be superproactive with these clinics,
calling in once a month andasking updates.
It felt like I was just putonto an Excel spreadsheet my
name, number, email and mydaughter's name but I would be
starting from point zero allover again.
It was just so frustrating.
I think families have to beself-advocates.
(09:37):
If you go down the road ofstarting to Google autism and
you're gonna end up in somescary rabbit holes.
So I think it's reallyimportant to find credible
information and ask theorganizations that you are on a
waitlist with to provide youwith that information.
They should be able to provideyou that information and they
(09:59):
should also be able to provideyou with other clinics in the
area so that you're not just ona single waitlist.
For my personal experience,kylie was like number 200 in the
world to be diagnosed with thisBainbridge Ropers.
But there was already aFacebook page.
We joined families withBainbridge Ropers and very
(10:21):
helpful to talk to otherfamilies around the world who
were going through the samething.
Sequencing technology becamemore accessible.
You'd see new families comeinto this Facebook page.
You would see many similaritiesto the families that you're
having.
You're making connections withthe moms and dads and seeing how
(10:41):
their children are progressing.
There are great resources andways to make connections online,
but there's also a double-edgedsword where you could go down
some dark holes if you'regetting bad information.
So it's up to the families todecipher what's good information
, and it's also up to theorganizations to provide
families with credibleinformation.
Speaker 1 (10:59):
I can't agree with you more.
I can't tell you the amount offamilies I've come in contact
that only call one agencybecause they think that's what
they're supposed to do.
The doctor gave me thisreferral and then they stop.
But if the doctor is giving areferral out to every parent
that gets diagnosed, I think thelast stat in the CDC don't
quote me on this is like one in28 or one in 29.
(11:21):
I think we're right about there.
If you have a census of how manykids are in your area, that's a
lot of children seekingservices at the same time and
there may not be enough agenciesto take that on.
So it is important to keepcalling every local agency.
And the other thing you saidwhich is important is Googling.
(11:41):
My son did not sleep for thefirst four years.
I don't know about your child.
And then I finally was like,okay, it'll be safe, put him on
melatonin.
The child has none.
So that was what I would do andwe had less services.
My son's 20 now.
So I would be Googling in themiddle of the night, going how
do you get a kid to sleep?
None of that stuff worked.
You can go down the scaryrabbit holes.
(12:02):
The other thing that you saidwhich is really important is
finding other parents who havegone through the same thing as
you.
I think that's important.
My family and friends loved me.
They loved my child.
They didn't understand they hadnot gone through it.
They were like let him cryhimself to sleep.
What's wrong with you?
Or just discipline him more, orhe's just being a boy.
I got all of that stuff, sowhat?
Speaker 2 (12:27):
This is from my experience.
By joining that Facebook group,we had a little boy in our area
who also had the same condition.
He ended up getting ABA therapyat this clinic where my
daughter goes.
That was how we ended upfinding the right place.
It was through theseconnections that ended up
leading us to exactly where shebelongs and where she's thriving
(12:49):
today.
So that was making thoseconnections.
The other thing is, during thattime it's easy to withdraw from
family and friends.
They don't really understandwhat you're going through.
Even before the diagnosis it'slike, oh, she just needs to be
disciplined differently oryou're doing things wrong.
(13:10):
And it was like people justdon't understand the experience
that my wife and I went throughand it was easier for us to say
we're not going to go to thisbirthday party or we're not
going to go out to theserestaurants.
It's just easier to stay home.
The practical things that youcould do is just continue to
(13:31):
live your life and go out and dothings, because giving your
child that exposure never goingto go well.
You're arming yourself foranother day.
You're like all right, it'sgoing to be a battle, but you
have to continue to see people,to go out and live your life and
expose your child to outsideworld.
Over time these things improve.
(13:52):
If you stay home in your ownbubble, nothing gets better.
So that's like a practicalthing that I look back on and I
remember how stressful every daythings like going to the beach
or restaurant but you have to goout and do those things, you
have to put yourself out there.
Speaker 1 (14:11):
I always go back to this one moment.
My son could not take changingthe schedule.
My husband worked away a lot.
I had to go get pull-ups afterwork one day.
I got him in the store we'redoing great and get him in the
car.
He bucks in his car seat for 45minutes.
45 minutes, no lie, like.
This child was like nope, notgoing back in, will you change
(14:32):
the schedule.
And so I'm patiently trying allof this stuff and not realizing
, because my son is literallyscreaming like I'm killing him.
I look over and there's a groupof moms just standing there
making sure I wasn't harming mychild and I was like you just
take that side of this is whatthis is.
(14:53):
And to other parents or otherpeople it can be very jarring if
they don't have the knowledgeand it can be very isolating to
feel like I'm getting judged bythe rest of the world.
And that's why I think thoseconnections are so important,
because it lessens that judgment.
Speaker 2 (15:11):
Important because it lessens that judgment.
Yeah, just sharing with otherfamilies talking about the
parking lot situation ormeltdowns in stores.
Eventually you part into itwhere you don't care about what
other people are thinking, whichis nice.
But sharing those experienceswith other families who can
relate is very cathartic.
Speaker 1 (15:31):
I'm skipping ahead because we've been having
conversation about it, but Ithink this is a really important
piece of it too, because, asI'm sure you went through, when
the diagnosis first comes out,you start for lack of a better
word tripping in your head aboutwhat that's going to look like
for the future.
Does ABA work?
Does OT work, or are theymaking progress fast enough?
(15:52):
You just play this trip in yourhead Are they going to be able
to do this and this?
How do you balance that hopewith reality so you stay
grounded?
Speaker 2 (16:00):
expectations of parenthood was kind of like
thrown out the window, and mywife found this poem.
It's called Welcome to Holland.
I don't know if you've everheard of it before, but it's
(16:21):
about parenthood and a familygetting ready for a trip and
they're going to Italy, but theplane ends up landing in Holland
.
It's not at all what theyexpected, but it's also
beautiful in a completelydifferent way than what you
originally thought it was goingto be.
(16:41):
I think that's the hardest part.
You could still obviously havehope, but you can't have these
hardened expectations of whatyour life is going to be,
because it changes.
Kylie's still very young.
She's only eight years old.
If I look back sometimes it'shard to remember how far she's
(17:02):
come.
It's incredible, and I have noidea what the future is going to
be for her, how independent herlife is.
I can't help but think about itall the time.
Is she going to need us for therest of her life or will she
have some independence?
And I honestly don't know.
I have hopes but I don't haveexpectations, because it is what
(17:24):
it is and either way, it'sgoing to have challenges, but
it's also going to have beautyto it and it's going to be, like
you said, a trip to have beautyto it.
And it's going to be, like yousaid, a trip, and you have to
have this kind of mentality ofyou're on a journey and you're
going to do whatever you can tolove your child, be there for
your child in any capacity thatyou can and just hope that there
(17:47):
is some sort of independencefor them.
But if there isn't, I'll bethere as long as I can be for
them.
Speaker 1 (17:56):
But if there isn't, I'll be there as long as I can
be.
I think that's beautiful.
I've hosted parent supportgroups and one of the biggest
things is that the milestone mayor may not be hit the reality,
but there's tiny celebrations ofwhat is being hit If you stay
in the realm of things they areaccomplishing and comparing your
child to your child or otherpeople's children.
(18:17):
I think there's a lot of beautyin going.
They aren't where they were twoweeks ago, but I think as
parents, we sometimes want to go.
Well, they're not moving fastenough, but they're really
moving in a beautiful speed forthemselves.
Speaker 2 (18:31):
Yeah, you celebrate the little things.
When you're in it day to day,it's hard to know how much
progress you made.
We like to track the milestones.
We write them down.
We have a shared note in ourphones and we look back on it.
It's really incredible just howfar she's come and you kind of
take it for granted.
But you look back and you justremember, especially during
(18:52):
those COVID days it was sostressful you didn't know how
you were going to make itthrough another day.
But you make it through and youcelebrate those wins.
Speaker 1 (19:00):
Absolutely.
A couple of last questions.
One is Hans working inhealthcare tech and autism
advocacy changed how you seesolutions for families in the
waiting gap for families in thewaiting gap.
Speaker 2 (19:14):
Yes, so one of the biggest constraints right now is
the amount of RBTs.
The amount of BCBA just can'tkeep up with the demand.
Every couple of years they comeout with new diagnosis rates.
When I first started at CentralReach in 2018, it was one out
of every 150 children.
Now it's down to one out ofevery 28 in the United States.
(19:37):
These wait lists are growingand growing in.
The amount of clinicians can'tkeep up with that pace.
So by being in this tech world,I'm able to get a view of some
of these operational constraintsthat are slowing down access to
care.
So I've always found thatwithin the ABA space, technology
(20:01):
adoption has been slower thanbroader healthcare world.
So I've always tried to findtechnologies that are being used
across healthcare that could bebrought into the ABA space, and
one of those was a intakeplatform that could engage with
(20:21):
families in that intake journey.
So, every step along the waygetting documentation over being
able to engage with families inthat intake journey.
So every step along the waygetting documentation over being
able to communicate withfamilies, giving them
information.
Now I'm with a company calledTheraDriver, which is a
scheduling platform and, believeit or not.
Scheduling in the ABA world issuper complex because only
(20:45):
certain types of clinicians canwork with certain types of
clients.
You're seeing these kids on aday-to-day basis and there's a
lot of cancellations, whetherit's families canceling due to
illness or staff getting sick.
The last thing you want to dois cancel on a family and say we
can't provide you services.
(21:06):
Today, our platform gives theability to quickly find
available staff that are pairedup with this client so they can
work with them that day insteadof having to cancel on them.
I feel like there's a lot oftechnology, both on the clinical
side of things, but also on theoperational side, to help give
(21:29):
more access to care.
If you can get those schedulestight, more kids can come off.
The wait list Groups areopening new centers and services
all the time, trying to keep upwith the demand, but they have
to get the operations, thelogistics of running a center,
very streamlined in order to beable to see all these families
(21:50):
on that wait list.
Speaker 1 (21:53):
And I think that's incredible, because part of one
of the things is that RBT iswhen they work day in and day
out with the child.
There's a strong possibility ofburnout in this field, and so
having a tool to say I need amental health day and I know
that's not what families want tohear they like the consistency,
but if there is somebody elsewho is also paired with the
child that can step in, isfantastic.
(22:13):
We're all not going to show upon our best day every day and
it's better to have somebodywho's already paired with the
child and a quick schedulechange, which can be good for
children too, because there'svalue depending on your child's
case being able to make thischange.
It can be a growing experiencefor them too.
I love the fact that yourservice is doing that.
So one last question.
It's been a pleasure having youon the show.
(22:35):
But one last question.
I call this the wisdom seat.
If you could speak to a parentjust leaving the diagnostic
appointment today, what wouldyou want them to hear first?
Speaker 2 (22:46):
Welcome to Holland.
It's really your expectations.
Have an open mind, celebratelittle wins and be an advocate.
Really push for the information.
Connect with other familiesthat you can find, whether in
your community or online.
Share stories.
It's a cathartic process totalk about your experiences,
(23:08):
hearing very similar storiesfrom other families.
Speaker 1 (23:13):
Well, thank you so much for being on the show with
me.
It's been a complete pleasuregetting to know you more and
your story and your family'sstory.
I'm sure it will help familiesout there.
I hope everybody has a blessedand beautiful week and celebrate
the small wins.
Speaker 2 (23:27):
Thank you, Wendy.
Speaker 1 (23:33):
Thanks for pulling up a chair at Around the Spectrum.
Today's conversation helped youfeel a little more seen, a
little more supported or just abit more grounded.
We'd love it if you'd subscribe, leave a review or share the
episode with someone who gets it.
Remember, none of us have allthe answers, but when we sit at
the same table, we understandmore and judge less.
I'm your host, wendyManganiello.
(23:55):
Until next time, take care ofyourself and each other.
Hi everyone.
Welcome to Around the Spectrum,where parents, pros and those
in between pull up a chair forhonest conversations, grounded
guidance and real stories aboutraising and supporting autistic
kids.
I'm your host, wendy Manganera.
As a parent, marketing leaderand longtime autism ally, I know
how overwhelming and isolatingthis journey can feel.
(00:21):
That's why we're here, becausewhen we sit at the same table,
we understand more and judgeless.
On today's episode of Around theSpectrum, we're pulling up a
chair with another parentwalking this journey, not with a
perfect plan, but with livedexperience and a whole lot of
horror.
You'll hear how they navigateddiagnosis services and the
in-between moments no oneprepares you for.
(00:42):
Today we are on with MichaelVassar, who is a dad, husband
and advocate for familiesraising children with
disabilities.
He and his wife, kim have spentthe past eight years working in
the children's disabilitiescommunity, work that began when
their first daughter was born.
Mike brings a unique dualperspective as a parent
navigating the everydayrealities of autism and as a
(01:04):
professional in the technologyspace, where he helps provide
software tools that supportautism care providers.
This combination of livedexperience and industry insight
has given him a front row seatto both the challenges and the
incredible joys that come withthe autism journey.
Welcome, mike.
Speaker 2 (01:23):
Hi Wendy, thanks for having me Very excited to have
this discussion with you andtalk about my the autism journey
.
Welcome, mike.
Hi Wendy, thanks for having meVery excited to have this
discussion with you and talkabout my family's journey.
Speaker 1 (01:30):
I always like to pull the shade back a little and say
that Mike and I know each otherfrom previous experience.
When I was doing the show Ithought I've got to get back in
touch with him.
We both work in the autismarena and he seemed like a great
guest to have on because he hassuch a wonderful lived
experience.
Let's start with your journey.
Can you share a little bitabout your daughter, her
(01:52):
diagnosis and how that momentshaped you as both a parent and
a professional?
Speaker 2 (01:58):
Absolutely so.
My oldest daughter she'll beeight years old in about a month
my oldest daughter she'll beeight years old in about a month
she was diagnosed with a veryrare genetic disorder called
Bainbridge-Roper.
She was about 18 months old.
She ended up getting an autismdiagnosis a few years later.
(02:20):
Early on, we noticeddevelopmental delays and we had
a neurologist visits.
She got MRI scans.
We were doing physical therapy,occupational therapy, but it
wasn't until we had geneticsequencing.
We got a real diagnosis, whichwas both a relief to have some
(02:45):
answers but also quite scarybecause we didn't know anything
about Bainbridge Ropers and whatthat meant.
I could talk a little bit aboutwhat that journey was like, but
that is a little bit aboutKylie.
Speaker 1 (02:58):
Thank you.
As a parent, when you go in forone thing and then you get a
diagnosis that you don't expect,it's a surreal moment because
you're like, but that's not whyI'm here.
Speaker 2 (03:06):
She was our first daughter so I didn't have a lot
to compare it to.
We would bring her into thepediatrician.
My wife had an intuitionthere's something that's not
right.
But the pediatrician keptsaying she's a little bit
delayed, but there's nothing toworry about.
I was almost like head in thesand, like everything will work
out.
But my wife was pushing like weneed to get more testing done.
(03:28):
Things like rolling over.
She wasn't rolling over at thisstage, wasn't sitting up when
we pick her up at daycare.
She didn't show any type oflike awareness that mom and dad
is here.
She wouldn't make eye contactwith those type of things.
She wouldn't make eye contactwith those type of things.
Certain people in our life kindof were like maybe you should
(03:48):
get this tested and get a closerlook at what's going on when we
end up getting to the point ofdoing the genetic sequencing.
I remember sitting in thatdoctor's office and she made a
statement along the lines oftoday's, the first day of the
rest of your life.
It hit me immediately.
I'm like, oh my God, she foundsomething.
(04:09):
She said Bainbridge Ropers,very rare genetic disorder,
number 200 in the world, andthat was super scary.
But it also became very clearthat the mission, the family,
everything changed at thatmoment, both for the good and
the bad.
Speaker 1 (04:29):
There is something that changes instantly when you
do that full circle and go okay,I have to do things differently
.
Now, In your case, which Ithink is amazing, you work in
tech.
That's how we met originally Iwas working in ABA and Mike was
working in tech.
We had a chance to get to knoweach other.
Then You've said your careerand your role as a dad have run
(04:50):
parallel.
What does that mean or what didthat look like during that time
?
Speaker 2 (05:08):
2018.
Central Reach is the electronichealth record for autism
organizations that helps runtheir day-to-day business.
I didn't know anything aboutautism at that time.
I didn't even know what ABAstood for, but I had a friend
who was a BCBA working atCentral Reach and said you
should come.
We have open sales positions andI was looking to make a change
at that point, so I ended uptaking that job, and it's just
(05:29):
one of those moments where theuniverse puts you in the right
place at the right time.
I was surrounded by cliniciansspeech pathologists,
occupational therapists, BCBAsand they were a huge part of
assessing Kylie and helping usunderstand the path forward with
(05:53):
her delays and where to findtherapies.
So that was the moment where Ihad taken a sales job, but it
ended up intersecting with therest of my life.
I was in the right place at theright time and ever since then,
I've devoted my professionallife to helping care providers
(06:13):
in the way that I can, which isfinding useful technologies that
give access to care and makethe lives of clinicians and the
back office folks easier so theycan focus on their clients.
Speaker 1 (06:29):
When my son was diagnosed, I was working with
adults with disabilities runningprograms, but I had never seen
the other side diagnose us whenthey were young, but I really
had never done work with earlylearning.
It's very different than whensomebody already comes
pre-diagnosed as an adult andyou're helping them through a
different set of systems.
(06:50):
I do think it did surround mewith the right support, Even
though I didn't work directly inthat field.
Everybody I knew knew somebodyand was really helpful, so that
was a blessing in disguise.
We've talked about this andit's a huge reality If you are a
parent looking for services andit's not all services, but
certainly in the ABA field,which is probably one of the
(07:10):
first things that theneurologist pediatricians if you
have a diagnosis of autism,they may suggest ABA.
It's a very common thingbecause it does work.
But there are more children onthe spectrum than we have
services and BCBAs and that's areality, and so there tends to
be wait lists.
Sometimes you even get an RBTand they leave and then you have
(07:31):
another wait list.
So one of the things that youcan help with is what the gap
looks like of signing up forservice and getting service
between your child's diagnosisand starting, because it's a
reality that you're not going tocall and get an instant
appointment.
So, as a parent, what can theydo?
Speaker 2 (07:50):
Yeah, so you really have to be a self-advocate.
We had a very similarexperience.
We weren't given a timeline.
It was very open-ended but wewere given, when we got the
diagnosis, a list of localorganizations to reach out to,
and every single one of themsaid that they didn't have
(08:11):
availability but we would be puton a wait list.
And my frustration at thatpoint was okay, we'll go through
this intake process, we'll getyou all the documentation, all
the information that you need.
That I can upfront, but therewas just no communication to me
(08:32):
or my wife about updates.
Luckily, my wife and myself comefrom the industry side, so we
understand what ABA is, but fora lot of families that have no
idea what they're about to getinto, it's really important for
these organizations to providesome knowledge of what the
(08:53):
science is of ABA.
There's a lot that families cando on their own as they wait.
There's just interventions andtactics that families can have
that they don't necessarily needa clinician right.
They just need to be armed withthe information of things that
they can do on their own.
And that was my frustration thelack of knowledge.
(09:15):
And I would have to be superproactive with these clinics,
calling in once a month andasking updates.
It felt like I was just putonto an Excel spreadsheet my
name, number, email and mydaughter's name but I would be
starting from point zero allover again.
It was just so frustrating.
I think families have to beself-advocates.
(09:37):
If you go down the road ofstarting to Google autism and
you're gonna end up in somescary rabbit holes.
So I think it's reallyimportant to find credible
information and ask theorganizations that you are on a
waitlist with to provide youwith that information.
They should be able to provideyou that information and they
(09:59):
should also be able to provideyou with other clinics in the
area so that you're not just ona single waitlist.
For my personal experience,kylie was like number 200 in the
world to be diagnosed with thisBainbridge Ropers.
But there was already aFacebook page.
We joined families withBainbridge Ropers and very
(10:21):
helpful to talk to otherfamilies around the world who
were going through the samething.
Sequencing technology becamemore accessible.
You'd see new families comeinto this Facebook page.
You would see many similaritiesto the families that you're
having.
You're making connections withthe moms and dads and seeing how
(10:41):
their children are progressing.
There are great resources andways to make connections online,
but there's also a double-edgedsword where you could go down
some dark holes if you'regetting bad information.
So it's up to the families todecipher what's good information
, and it's also up to theorganizations to provide
families with credibleinformation.
Speaker 1 (10:59):
I can't agree with you more.
I can't tell you the amount offamilies I've come in contact
that only call one agencybecause they think that's what
they're supposed to do.
The doctor gave me thisreferral and then they stop.
But if the doctor is giving areferral out to every parent
that gets diagnosed, I think thelast stat in the CDC don't
quote me on this is like one in28 or one in 29.
(11:21):
I think we're right about there.
If you have a census of how manykids are in your area, that's a
lot of children seekingservices at the same time and
there may not be enough agenciesto take that on.
So it is important to keepcalling every local agency.
And the other thing you saidwhich is important is Googling.
(11:41):
My son did not sleep for thefirst four years.
I don't know about your child.
And then I finally was like,okay, it'll be safe, put him on
melatonin.
The child has none.
So that was what I would do andwe had less services.
My son's 20 now.
So I would be Googling in themiddle of the night, going how
do you get a kid to sleep?
None of that stuff worked.
You can go down the scaryrabbit holes.
(12:02):
The other thing that you saidwhich is really important is
finding other parents who havegone through the same thing as
you.
I think that's important.
My family and friends loved me.
They loved my child.
They didn't understand they hadnot gone through it.
They were like let him cryhimself to sleep.
What's wrong with you?
Or just discipline him more, orhe's just being a boy.
I got all of that stuff, sowhat?
Speaker 2 (12:27):
This is from my experience.
By joining that Facebook group,we had a little boy in our area
who also had the same condition.
He ended up getting ABA therapyat this clinic where my
daughter goes.
That was how we ended upfinding the right place.
It was through theseconnections that ended up
leading us to exactly where shebelongs and where she's thriving
(12:49):
today.
So that was making thoseconnections.
The other thing is, during thattime it's easy to withdraw from
family and friends.
They don't really understandwhat you're going through.
Even before the diagnosis it'slike, oh, she just needs to be
disciplined differently oryou're doing things wrong.
(13:10):
And it was like people justdon't understand the experience
that my wife and I went throughand it was easier for us to say
we're not going to go to thisbirthday party or we're not
going to go out to theserestaurants.
It's just easier to stay home.
The practical things that youcould do is just continue to
(13:31):
live your life and go out and dothings, because giving your
child that exposure never goingto go well.
You're arming yourself foranother day.
You're like all right, it'sgoing to be a battle, but you
have to continue to see people,to go out and live your life and
expose your child to outsideworld.
Over time these things improve.
(13:52):
If you stay home in your ownbubble, nothing gets better.
So that's like a practicalthing that I look back on and I
remember how stressful every daythings like going to the beach
or restaurant but you have to goout and do those things, you
have to put yourself out there.
Speaker 1 (14:11):
I always go back to this one moment.
My son could not take changingthe schedule.
My husband worked away a lot.
I had to go get pull-ups afterwork one day.
I got him in the store we'redoing great and get him in the
car.
He bucks in his car seat for 45minutes.
45 minutes, no lie, like.
This child was like nope, notgoing back in, will you change
(14:32):
the schedule.
And so I'm patiently trying allof this stuff and not realizing
, because my son is literallyscreaming like I'm killing him.
I look over and there's a groupof moms just standing there
making sure I wasn't harming mychild and I was like you just
take that side of this is whatthis is.
(14:53):
And to other parents or otherpeople it can be very jarring if
they don't have the knowledgeand it can be very isolating to
feel like I'm getting judged bythe rest of the world.
And that's why I think thoseconnections are so important,
because it lessens that judgment.
Speaker 2 (15:11):
Important because it lessens that judgment.
Yeah, just sharing with otherfamilies talking about the
parking lot situation ormeltdowns in stores.
Eventually you part into itwhere you don't care about what
other people are thinking, whichis nice.
But sharing those experienceswith other families who can
relate is very cathartic.
Speaker 1 (15:31):
I'm skipping ahead because we've been having
conversation about it, but Ithink this is a really important
piece of it too, because, asI'm sure you went through, when
the diagnosis first comes out,you start for lack of a better
word tripping in your head aboutwhat that's going to look like
for the future.
Does ABA work?
Does OT work, or are theymaking progress fast enough?
(15:52):
You just play this trip in yourhead Are they going to be able
to do this and this?
How do you balance that hopewith reality so you stay
grounded?
Speaker 2 (16:00):
expectations of parenthood was kind of like
thrown out the window, and mywife found this poem.
It's called Welcome to Holland.
I don't know if you've everheard of it before, but it's
(16:21):
about parenthood and a familygetting ready for a trip and
they're going to Italy, but theplane ends up landing in Holland
.
It's not at all what theyexpected, but it's also
beautiful in a completelydifferent way than what you
originally thought it was goingto be.
(16:41):
I think that's the hardest part.
You could still obviously havehope, but you can't have these
hardened expectations of whatyour life is going to be,
because it changes.
Kylie's still very young.
She's only eight years old.
If I look back sometimes it'shard to remember how far she's
(17:02):
come.
It's incredible, and I have noidea what the future is going to
be for her, how independent herlife is.
I can't help but think about itall the time.
Is she going to need us for therest of her life or will she
have some independence?
And I honestly don't know.
I have hopes but I don't haveexpectations, because it is what
(17:24):
it is and either way, it'sgoing to have challenges, but
it's also going to have beautyto it and it's going to be, like
you said, a trip to have beautyto it.
And it's going to be, like yousaid, a trip, and you have to
have this kind of mentality ofyou're on a journey and you're
going to do whatever you can tolove your child, be there for
your child in any capacity thatyou can and just hope that there
(17:47):
is some sort of independencefor them.
But if there isn't, I'll bethere as long as I can be for
them.
Speaker 1 (17:56):
But if there isn't, I'll be there as long as I can
be.
I think that's beautiful.
I've hosted parent supportgroups and one of the biggest
things is that the milestone mayor may not be hit the reality,
but there's tiny celebrations ofwhat is being hit If you stay
in the realm of things they areaccomplishing and comparing your
child to your child or otherpeople's children.
(18:17):
I think there's a lot of beautyin going.
They aren't where they were twoweeks ago, but I think as
parents, we sometimes want to go.
Well, they're not moving fastenough, but they're really
moving in a beautiful speed forthemselves.
Speaker 2 (18:31):
Yeah, you celebrate the little things.
When you're in it day to day,it's hard to know how much
progress you made.
We like to track the milestones.
We write them down.
We have a shared note in ourphones and we look back on it.
It's really incredible just howfar she's come and you kind of
take it for granted.
But you look back and you justremember, especially during
(18:52):
those COVID days it was sostressful you didn't know how
you were going to make itthrough another day.
But you make it through and youcelebrate those wins.
Speaker 1 (19:00):
Absolutely.
A couple of last questions.
One is Hans working inhealthcare tech and autism
advocacy changed how you seesolutions for families in the
waiting gap for families in thewaiting gap.
Speaker 2 (19:14):
Yes, so one of the biggest constraints right now is
the amount of RBTs.
The amount of BCBA just can'tkeep up with the demand.
Every couple of years they comeout with new diagnosis rates.
When I first started at CentralReach in 2018, it was one out
of every 150 children.
Now it's down to one out ofevery 28 in the United States.
(19:37):
These wait lists are growingand growing in.
The amount of clinicians can'tkeep up with that pace.
So by being in this tech world,I'm able to get a view of some
of these operational constraintsthat are slowing down access to
care.
So I've always found thatwithin the ABA space, technology
(20:01):
adoption has been slower thanbroader healthcare world.
So I've always tried to findtechnologies that are being used
across healthcare that could bebrought into the ABA space, and
one of those was a intakeplatform that could engage with
(20:21):
families in that intake journey.
So, every step along the waygetting documentation over being
able to engage with families inthat intake journey.
So every step along the waygetting documentation over being
able to communicate withfamilies, giving them
information.
Now I'm with a company calledTheraDriver, which is a
scheduling platform and, believeit or not.
Scheduling in the ABA world issuper complex because only
(20:45):
certain types of clinicians canwork with certain types of
clients.
You're seeing these kids on aday-to-day basis and there's a
lot of cancellations, whetherit's families canceling due to
illness or staff getting sick.
The last thing you want to dois cancel on a family and say we
can't provide you services.
(21:06):
Today, our platform gives theability to quickly find
available staff that are pairedup with this client so they can
work with them that day insteadof having to cancel on them.
I feel like there's a lot oftechnology, both on the clinical
side of things, but also on theoperational side, to help give
(21:29):
more access to care.
If you can get those schedulestight, more kids can come off.
The wait list Groups areopening new centers and services
all the time, trying to keep upwith the demand, but they have
to get the operations, thelogistics of running a center,
very streamlined in order to beable to see all these families
(21:50):
on that wait list.
Speaker 1 (21:53):
And I think that's incredible, because part of one
of the things is that RBT iswhen they work day in and day
out with the child.
There's a strong possibility ofburnout in this field, and so
having a tool to say I need amental health day and I know
that's not what families want tohear they like the consistency,
but if there is somebody elsewho is also paired with the
child that can step in, isfantastic.
(22:13):
We're all not going to show upon our best day every day and
it's better to have somebodywho's already paired with the
child and a quick schedulechange, which can be good for
children too, because there'svalue depending on your child's
case being able to make thischange.
It can be a growing experiencefor them too.
I love the fact that yourservice is doing that.
So one last question.
It's been a pleasure having youon the show.
(22:35):
But one last question.
I call this the wisdom seat.
If you could speak to a parentjust leaving the diagnostic
appointment today, what wouldyou want them to hear first?
Speaker 2 (22:46):
Welcome to Holland.
It's really your expectations.
Have an open mind, celebratelittle wins and be an advocate.
Really push for the information.
Connect with other familiesthat you can find, whether in
your community or online.
Share stories.
It's a cathartic process totalk about your experiences,
(23:08):
hearing very similar storiesfrom other families.
Speaker 1 (23:13):
Well, thank you so much for being on the show with
me.
It's been a complete pleasuregetting to know you more and
your story and your family'sstory.
I'm sure it will help familiesout there.
I hope everybody has a blessedand beautiful week and celebrate
the small wins.
Speaker 2 (23:27):
Thank you, Wendy.
Speaker 1 (23:33):
Thanks for pulling up a chair at Around the Spectrum.
Today's conversation helped youfeel a little more seen, a
little more supported or just abit more grounded.
We'd love it if you'd subscribe, leave a review or share the
episode with someone who gets it.
Remember, none of us have allthe answers, but when we sit at
the same table, we understandmore and judge less.
I'm your host, wendyManganiello.
(23:55):
Until next time, take care ofyourself and each other.
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