0:06
hi everyone I'm Kelly ooro and this is
0:09
adaptable Behavior explained hi
0:12
everybody thank you for tuning in we're
0:14
going to talk today about parenting a
0:16
child with autism and all that goes
0:18
along with that or as much as we can
0:20
cover in our episode I am super grateful
0:23
to introduce to you Taylor ooro uh my
0:27
daughter-in-law and the mother of my son
0:30
who happens to have autism and she's
0:32
been brave and vulnerable enough to um
0:35
be here with us today so that we can
0:37
talk about this journey and what it's
0:39
been like and hopefully share with you
0:41
all a little bit so that you don't feel
0:43
so alone and shed some light for those
0:45
who are not privy to what it's like uh a
0:48
little bit more about this topic so
0:49
Taylor thank you so much for being here
0:51
I really appreciate it of course so we
0:53
can go ahead and dig right in um you
0:56
know when I was thinking about doing
0:57
this episode one of the things that
1:00
when he was so little you know and as a
1:04
mental health professional I was
1:06
observant but not with an overly
1:09
critical eye but I recognized you know
1:11
something did seem a little bit off
1:13
compared to you know our oldest
1:15
granddaughter your your daughter and um
1:18
and other children I had seen at similar
1:20
ages and I was just wondering what made
1:23
you question if he was developmentally
1:25
appropriate or on track you know I think
1:27
the first indication for me was going
1:30
off my own gut instincts and just
1:32
feeling um from the very beginning like
1:35
something was just different and what I
1:38
remember was he never cried um he loved
1:42
to be held but he also was okay not
1:46
being held for like several hours at a
1:48
time um I remember at one point a doctor
1:52
said you know maybe they can track with
1:54
their eyes and I just watched and he
1:56
wasn't tracking with his eyes so I think
1:58
as early as like probably two months old
2:01
I was kind of starting to get an idea
2:03
that maybe there was a developmental
2:06
delay of some sort but I wasn't really
2:07
sure what that might be yeah you know I
2:10
remember personally you know and this
2:13
might be helpful for family members
2:15
too it's there was there was a moment
2:18
for me and I would say it was it was it
2:20
was probably around the N9 or 10 month
2:22
Mark where you know I I don't want to
2:24
over identify somebody I don't want to
2:26
you can't diagnose your own family but
2:28
we you know I am trained to be aware of
2:31
Developmental appropriate milestones and
2:32
I remember thinking as I watched him
2:35
like I'm not sure something's not quite
2:38
right I don't know what it is and I
2:39
don't I as as a mom didn't really know
2:42
how to approach the subject and I had
2:45
this internal conflict because I wanted
2:48
to be honest and transparent but I also
2:50
didn't want you guys to be upset with me
2:52
if I brought it up and you weren't
2:53
either a in agreement or ready to hear
2:56
it or wanting to explore it so I
2:58
remember for a few months having that
3:00
sense that something wasn't quite right
3:03
and not having said something um when we
3:06
started talking about it what was it
3:08
like for you honestly it was like the
3:12
moment where you kind of know right like
3:15
as a mom you you just have this like you
3:18
know and there's this other part where
3:21
you're kind of like are people getting
3:24
in my head like am I you know delving
3:27
too much into this um am I looking for
3:30
something to be wrong like is it a me
3:32
issue so there was definitely this
3:34
divide of like just who to trust and how
3:37
to trust and how to proceed and I just
3:40
had to follow you know the advice of the
3:44
people I trusted which were you um and a
3:47
few other family members and doctors
3:49
that were kind of starting to go okay I
3:51
may be seeing a little bit of something
3:53
let's just keep watching and and that's
3:55
one of the hardest things to be told is
3:57
just to keep watching when you don't
3:58
know what's going on so it was a little
4:00
bit for you it was a little bit
4:01
validating cuz you had a sense much
4:03
younger than I did yes that something
4:06
wasn't quite right but to have me point
4:08
something out was turned out to be
4:11
liberating good okay that's good you
4:13
know and and honestly we've never really
4:15
talked about it in this way before so
4:17
it's nice to hear that because I mean
4:19
you never came back at me as if I did
4:21
something inappropriate or out of bounds
4:23
but um but it it is nice to hear that it
4:25
was okay and and it was actually
4:27
appreciated because it made me feel like
4:29
oh okay I'm not the only one who sees
4:32
this because in the world right some
4:35
people just maybe don't see it because
4:37
they're not around the kid enough or so
4:40
it was good to have eyes from someone
4:41
who was around him so frequently that
4:44
could tell me like okay I'm seeing this
4:47
too so it was actually like all right
4:49
and then I also felt like in that moment
4:51
because you were so let's figure this
4:53
out together it was like I'm not alone
4:56
so that was really relieving in that
4:57
moment too just knowing like everybody's
5:00
uh is fortunate to have support that
5:03
either gets it or understands or can
5:05
yeah so and that you know is going to
5:07
accept your kid and love your kid oh for
5:08
sure for all their differences and yeah
5:10
I I appreciate that so when we you know
5:14
we were talking about it thinking about
5:15
it what tell us what your first steps
5:18
were in I guess verifying or figuring
5:22
out can you can you share with everybody
5:24
what what you did what you did
5:26
next so the first thing I did was took
5:29
Jensen to um his doctor his pediatrician
5:33
who I trust who obviously as you know
5:35
has seen all of our family who we adore
5:38
um and I said do you think something's
5:40
wrong and he said well let me refer you
5:42
to asip who is the state agency who
5:45
covers um birth to three before kiddos
5:48
can really even get evaluated right
5:50
through the state because that's usually
5:51
around two so I knew that I needed to
5:55
get him Services of some sort but I
5:58
didn't know how I didn't know where
5:59
where to start I didn't I just needed
6:01
help so asip came in and they were a
6:04
great resource for getting me in touch
6:05
and they'd come in and help and um they
6:09
coached me mostly and that's kind of
6:10
their model is coaching the parents
6:12
because we're with them most of the time
6:14
right and so as soon as he was about 18
6:17
months old um we got him into speech
6:20
therapy right and that was when I was
6:23
like okay he's still not talking he's
6:26
not even babbling so obviously let's get
6:29
him into speech get him started and then
6:33
from there his speech therapist was like
6:35
well let's just watch and so it's just a
6:37
bunch of people watching at this point
6:39
right we're all we're all just watching
6:41
but what are we going to do are we going
6:42
to do right and there's a part in me
6:44
that's a fixer so I'm like how do I fix
6:46
this like what do I do sure well and and
6:48
and as any attentive mom would want to
6:52
make sure you didn't you know kick the
6:54
ball down the road you want to be
6:55
proactive with these kinds of things so
6:58
tell me a little bit about what it was
7:00
like learning you know he he does meet
7:02
the criteria for autism and what was it
7:06
like for you when you first found that
7:08
out there was a name for it what went on
7:11
in in you what were the thoughts you
7:13
know conversation between you and your
7:15
husband can you share a little bit about
7:16
like the initial onset of having this
7:19
told to you like yep that's what's
7:21
happening I want to be very
7:23
compassionate as I say this because I
7:24
know everybody's experience is different
7:26
right my experience was it was like this
7:32
kind of like my world turned upside down
7:33
and not in a bad way by any stretch of
7:35
the imagination just I knew that it was
7:38
going to be different and I knew that I
7:39
was going to have to conform to
7:41
different and the initial was like you
7:44
know you have these expectations as a
7:45
parent of how your kid's going to be
7:48
which again is motivated inside and it's
7:52
not about us right it's about letting
7:53
them be their unique selves right so
7:56
initially it was like this expectation
7:57
versus reality my reality changed and I
8:01
went through the guilt of like did I do
8:04
this to him I mean you know you get this
8:06
fine list of all the things you can't do
8:07
when you're pregnant you can't eat you
8:09
know shellfish or you know you can't do
8:12
this massive list of things and I was
8:15
thinking did I eat something that
8:18
contributed to this or was I not in my
8:21
body enough that he felt that like I I
8:24
really had this massive guilt and so I
8:28
went into fix mode as I think we all do
8:32
and thankfully went to trauma therapy
8:34
too so that kind of helped settle you
8:36
know that part of it down but yeah there
8:38
was a it was definitely a very confusing
8:41
time in my life of like you know I don't
8:44
want the world to eat my kid alive
8:45
either right and and was there any sense
8:48
of you know was there any sense of
8:51
urgency like if we don't get this
8:53
figured out and he doesn't end up
8:56
functional or independent enough like
8:59
what what does that mean for me as a
9:00
person did any of that crash your mind
9:03
absolutely absolutely because you know
9:05
you have so many people in your ear
9:07
telling you how you're supposed to do
9:09
this or do this or this doesn't work or
9:11
this doesn't work and I just had to go
9:13
with my gut and I had to I mean I spent
9:16
so many hours researching like what am I
9:18
supposed to do what is the most like you
9:20
know and I didn't need and what I got to
9:22
was I don't need to fix him right cuz
9:24
he's not broken right I just have to
9:26
accept that it looks different and his
9:29
different is actually a gift from my
9:31
expectation to reality really and so
9:34
what I really wanted to delve into was
9:37
making sure that he had some social
9:39
skills right because I know that
9:42
rejection trauma is real and I know that
9:44
it hurts and I know that I can't always
9:47
protect him from that but I just really
9:50
that I I did jump into that that I
9:53
jumped into you know making sure I did
9:55
the right thing and especially because
9:57
they emphasize how important it is
9:59
from birth to three like the earlier you
10:02
catch it right you know the efficacy is
10:04
just it's just higher well their little
10:06
brains are developing at such
10:08
exponential rates when they're so little
10:10
and you know I have to really tip my hat
10:13
to you because I don't know what it's
10:16
like to be a young mother and find this
10:18
out about my child and know like
10:20
everything about the trajectory of my
10:23
daily experience is about to massively
10:27
change and and if I don't get on board
10:30
with that the outcome will essentially
10:32
be my fault right because we have access
10:35
to resources and understand something
10:37
and then if we choose not to do
10:38
something about that boy then the then
10:41
the outcome really is our responsibility
10:43
I should say responsibility more than
10:44
fault because some people when they find
10:46
out really overwhelming things they shut
10:47
down and it's not necessarily that
10:49
they're bad people they just don't know
10:50
how to move forward because they're
10:51
frozen and so I want to make sure not to
10:54
speak in shaming language about people's
10:56
adaptations however I really just just I
10:59
can't say enough to you about how many
11:02
conversations you know Dad and I have
11:03
had about just girl is getting it I mean
11:06
she doesn't they don't miss the
11:08
treatments he's going to all of the you
11:10
know the ABA the speech the OT and just
11:13
you you know getting him to all of his
11:15
Services has really been a part-time job
11:17
for you guys and the fact that you've
11:19
been so diligent and amazing is is it's
11:22
it's exceptional honestly and you really
11:25
should be so proud of yourself and it
11:28
kind of makes me choke
11:30
thinking about that um he's very
11:33
lucky love you love you he's such a
11:37
special special guy um and I love that
11:39
you said it was a gift because you know
11:42
without knowing this at this current
11:44
stage you wouldn't necessarily know that
11:46
anything was such a developmental delay
11:48
he's a little bit quirky a little bit
11:50
Accentra but he's just nothing but love
11:52
I mean he's just so so special and so I
11:55
know he's a gift to our family but I
11:57
think this is really important for
11:58
people to get to hear because you know
12:00
not everybody has the resources or
12:02
learns early um you know about what's
12:04
going on or or has you know knows what
12:07
to do or can have the wherewithal to
12:09
make sure that services are you know uh
12:12
participated in for the child so I mean
12:14
there's you know a whole array of ways
12:16
that people intervene when they find
12:17
these things out and so I just can't
12:20
commend you guys enough and um for
12:22
taking such such Reigns whether the
12:25
adaptation was over function and fix fix
12:27
fix you know it served you and that got
12:29
a lot of support really early and that's
12:31
awesome but that leads me to another
12:33
question that I have for you which is
12:35
you know we know from the adverse
12:37
childhood experience study if we have a
12:39
family member that has you know a
12:41
developmental delay or a mental illness
12:44
or or anything that requires like a lot
12:47
of time and attention because of of
12:49
something that's not their fault it does
12:51
have a pretty tremendous or significant
12:53
impact on the other family members so
12:56
we've got two other lovely granddaughter
12:58
daughters is part of your family system
13:01
uh one who is eight and one who is four
13:04
three she's close to three yeah she's
13:06
three soon she act she's yeah she acts
13:11
34 but um but anyways so what's it been
13:15
like for you you know both behaviorally
13:18
and then internally as you you know this
13:21
I mean you know a little fun fact she's
13:23
in she's in school to become a a
13:25
psychologist and hopefully join us in
13:27
the ranks and maybe even be a future
13:29
assessor to help other parents that run
13:32
into these issues so we'll see love that
13:34
we'll see how your career path takes you
13:36
but in the meantime she's uh got a lot
13:38
of Education already under her belt
13:40
about to graduate with her degree in
13:41
Psychology as well so knowing I have a
13:44
child with a special need and I have two
13:46
other children that that are equally
13:48
important what has that been like for
13:50
you to try to balance it all how's that
13:52
felt what do you do if I'm being honest
13:56
as a mom you never think you're getting
13:58
it right no matter how hard you try it's
14:00
like you know I come home and I'm like I
14:03
got three kids I got to give three
14:04
kisses I got to give three hugs three
14:06
kids got to eat and three kids have to
14:08
have that equality right in my home I
14:11
believe in that and so I did go through
14:14
a period of phase like we talked about
14:16
with the fixer part that's like you know
14:19
I got to figure out what's the best
14:20
treatment who's the best Doctor Who's
14:21
the best naturopath like you know I just
14:23
have to create this community of people
14:25
I trust that are going to help me
14:27
because at a time and I'm not very at
14:28
asking for help I needed help right I
14:31
knew it I knew this was bigger than me
14:33
and I was like I just need help and so I
14:35
think what ended up happening was I over
14:37
functioned so much because I wanted to
14:40
fill his love tank so full because also
14:43
to offset the guilt probably like if I
14:45
was any part of why this happened yes I
14:48
got to get busy trying to fix that Mak
14:51
sense and if the world eats him alive
14:54
he's going to be resilient enough to
14:55
tolerate it because he comes home to a
14:57
place where his mom's got his back and
14:59
loves him and is going to support him
15:01
and whatever that endeavor is I remember
15:03
one time you even said that it reminds
15:05
me of that time when you said I said you
15:07
know it'll be interesting to see who
15:08
they all start to bring home and he's
15:10
like he's not bringing anyone home it's
15:11
always going to be his mama and that's
15:13
all that's going to be there and I just
15:14
remember laughing thinking I have five
15:16
Sons yeah that's not what happened so
15:20
you better open up those
15:22
arms but you know and I and I hope one
15:25
day that's a reality for him you know
15:27
and oh it absolutely will he is such a
15:29
love such a love and you know and I do
15:32
want to say that you know we're told
15:35
frequently in society by many people and
15:38
I've been told by doctors you know he
15:40
may never speak and I've had one doctor
15:42
actually definitively say he'll never
15:43
speak or you know they don't know how to
15:45
show emotions and you're probably never
15:47
going to get the affection but I've
15:49
learned that's a lie he asks for a hug
15:51
and kiss every night before bed he plays
15:53
makeb believe he thinks he's a train
15:55
every day he's a choooo train all day
15:57
long um or a shark yes or shark I'll
16:00
glad when that pH is over with the baby
16:02
now Maddie's on to the baby shark oh my
16:04
gosh always about that shark always
16:05
about that shark but you know it's like
16:08
he really has shown me that like he's
16:10
adaptable right in his own way and as we
16:13
all are right like we all are just
16:15
trying to adapt to this environment and
16:17
he's adapting and he's adapting in his
16:19
own way and so as you know he's little
16:21
Mr MacGyver right and he can break into
16:24
anything and he can build anything and
16:26
he's he wants to help his papa bu cuz
16:29
he's loves his papa um but to bring to
16:32
go back to that question it was hard
16:34
because I wanted to make sure that my
16:36
eldest child right was getting the
16:38
attention she needed because there was a
16:40
little you know moment in time where she
16:41
was struggling with school or other
16:44
things of course and then my youngest
16:46
child too who I had just had CU her and
16:49
or I think Jensen and Madison are only
16:50
like 18 to two they're so close they're
16:53
so close that I was like I have this new
16:55
baby that I just I want her to have
16:56
secure attachment too so how do I do
16:58
this right and there was a period of my
17:01
time where it just it really did take up
17:04
so much um real estate right trying to
17:07
get the right providers and get them in
17:08
but now that it's all kind of said and
17:10
done we've been able to implement a
17:12
little bit more of like equality my
17:15
house yes yes and so it's where I
17:18
remember when that shifted I remember
17:20
when thank God for my own Dr therapy
17:23
right because loving those little babies
17:26
of yours as much as I love my own kids
17:28
and knowing like it's not my Lane it's
17:30
not my journey and and you guys have
17:32
been so wonderful and allowing us to be
17:34
part of your village and and we have
17:36
tried really a lot to um to be honoring
17:39
of what it is what is it that we need to
17:41
be doing how do you want us to show up
17:43
what is it that you know because you
17:44
guys are putting in all the work to
17:45
figure out all the guidance but um and
17:47
we want to we want to be you know a
17:49
United Village as opposed to you know
17:52
things are so different at each home and
17:54
we do spend a lot of time together and I
17:55
think it's good for them to know there's
17:57
uniformity and what they can expect from
17:59
not only the love but also what's going
18:01
to be okay and not okay in our homes and
18:03
things like that and that there's that
18:05
support which is so important and we are
18:07
really lucky to have that so I'm
18:08
grateful that you know a lot of people
18:10
don't have that with their
18:11
daughters-in-law and I feel like we're
18:13
so close and of course so thankful to
18:15
that but um I was going to say
18:16
thankfully with my own therapy I
18:19
remember it shifted for me when I
18:21
because I noticed that there was like a
18:23
lot zeroed in on him because of what was
18:26
going on and feeling some of my own
18:27
anxiet around like H now the oldest is
18:30
really kind of getting the short end of
18:32
the stick here and you know it's a
18:34
burden everything's a burden because
18:35
she's you know she's old enough to
18:38
handle things and we've got to go fix
18:39
this one and you know and the little one
18:41
comes and she just m squawky mcquaw and
18:44
you're just like she's not going to be
18:45
ignored and watching how of all all this
18:47
was unfolding and I remember like almost
18:50
a settling of your nervous system
18:52
because that shifted and it became so
18:54
much less dire for you to and that was
18:57
so Wonder wonderful not just because of
19:00
course it'll benefit you know all the
19:01
other kids but but because it was
19:03
beautiful to see that evolution in you
19:05
and that acceptance and settling down in
19:07
you which of course they all benefit
19:09
from you know they all benefit when Moms
19:11
come babies can regulate and and um the
19:15
fact that you really took so much
19:17
initiative to to work on that for
19:18
yourself is is is another majorly
19:21
commendable thing that you did so should
19:23
be really proud of yourself always being
19:25
a work in progress and continuing the
19:28
what advice would you give um a parent
19:33
who who just finds this out what if you
19:35
had something you could share with a
19:37
parent that you wish someone would have
19:40
told you maybe what would you say you
19:42
know I would give it's kind of a little
19:44
bit of a long-winded piece of advice but
19:46
it would be a trust your gut your gut's
19:50
never going to steer you wrong right you
19:52
know inside you and also it doesn't hurt
19:56
to take you know the kiddo to the
19:58
pediatrician and just get a quick
20:00
checkup and maybe it's nothing maybe
20:03
it's something but at least it can ease
20:06
your mind either way right because the
20:08
reality is once you do kind of get that
20:11
paper that says you know your kids's ASD
20:13
level whatever cuz I don't love to sit
20:16
with the labels and the levels but when
20:19
they say that there's this moment of
20:20
like almost it's kind of like a weight
20:22
off your shoulder almost like now you
20:25
have confirmation and now you know how
20:27
to proceed and there's something that
20:28
you can do about it yes so so when you
20:30
think about this journey there has been
20:32
just a treasure treasure Trove of
20:34
information that you have you have
20:36
learned I mean you are you a tremendous
20:38
resource because of all the research and
20:40
everything that you've done but for
20:41
those of the people that are newer in
20:43
this journey uh of finding out about
20:45
their child what resources can you offer
20:49
that could make things a little bit
20:50
easier so that maybe they don't have to
20:52
work quite as hard as you did when they
20:54
figure this out about their own child so
20:57
the first thing I actually did was I
20:59
went and joined a bunch of Facebook
21:01
groups of autism moms okay and I just
21:04
started you know kind of engulfing
21:06
myself in that community and finding out
21:08
what I needed to find out like how do I
21:10
get an Autism evaluation where do I go
21:12
like what are the best places um it's a
21:15
little disheartening because most places
21:16
have about a year weit wow and so there
21:19
really is a need for more um
21:23
availability for that and there's a
21:24
bunch of kiddos that unless you can pay
21:26
cash price MH it's just a long wait so
21:29
my one of my biggest recommendations is
21:32
call around to all the places get on
21:34
every weight list you can get on until
21:37
the first person calls you back you know
21:39
and um that was the biggest thing I did
21:41
because once you have that evaluation
21:43
and you have that piece of paper the
21:45
psychologist or whoever evaluates
21:47
typically and it can be I think a
21:48
developmental pediatrician as well that
21:51
paper will show you where they kind of
21:53
strengths and not so much strengths are
21:56
basically you just go off that so we
21:58
knew Jensen wasn't speaking so I was
22:00
like okay I want to find a good speech
22:02
therapist so I reached out to a team of
22:05
people here at infinite because I knew
22:07
and trusted them and I said does anybody
22:09
know of any good clinics and they
22:11
pointed me to CDT kids which I they've
22:13
just been amazing right um and so really
22:16
finding good places too full of
22:18
providers who are you know tried and
22:22
true and people love have a heart for
22:24
this work and right for the re right
22:26
reasons right and there's not a lot of
22:28
um you know with ABA therapy there is a
22:31
lot of turnover in rbts and it is hard
22:33
work and I really commend those people
22:35
for you know for the job they do I just
22:38
really do and so it's a hard job and
22:41
it's hard to find an ABA company that's
22:43
going to take you know a new kiddo as
22:45
well cuz that's again a weight list so
22:48
it's again calling around and it's
22:50
begging and pleading and um just finding
22:53
all the resources and you'll get a
22:54
support coordinator and ask all the
22:56
questions ask so many questions be an
22:59
advocate be persistent don't give up
23:02
continue learning ask for help y
23:04
continue learning and I would add have
23:06
Grace for yourself if it takes some time
23:08
or if you need to trade providers
23:10
because you know you you ended up
23:12
somewhere that isn't a the best fit for
23:14
your family or for your needs trust your
23:16
instinct on that for sure TR Your
23:17
Instinct good so we'll go ahead and put
23:20
the resources that we talked about today
23:22
and more uh in the comments below so
23:24
please feel free to utilize those I
23:27
really really thank thank you for coming
23:29
and being here with me today and sharing
23:31
in such a vulnerable courageous way
23:33
about what your journey has been like um
23:35
you are such a special gift he is such a
23:37
special gift to our family I just thank
23:40
you for sharing a little bit about your
23:41
story with with us so that um others
23:44
might not have it quite so challenging
23:46
so thank you so much thanks for having
23:48
me on so thanks everybody for tuning in
23:50
we hope this episode was helpful and uh
23:53
don't forget to lead with love it'll