To Disclose…or Not? [Video]

By Understood

Who do you tell? When? Telling people your child has ADHD, dyslexia, or other learning challenges is a big, complicated decision. Hosts Amanda Morin and Lexi Walters Wright talk with families whose experiences range from triumphant to cautionary. Gimlet Media’s Wilson Standish shares why he’s still cautious about disclosing. And expert Manju Banerjee explains how to pass the disclosure torch to your young adult child.

To find a transcript for this episode and more resources, visit the episode page at Understood. https://www.understood.org/podcast/in…

We love hearing from our listeners. Email us at [email protected].

Understood is a nonprofit and social impact organization dedicated to shaping a world where the 1 in 5 people who learn and think differently can thrive. Learn more about “In It” and all our podcasts at u.org/podcasts. Copyright © 2019 Understood for All, Inc. All rights reserved.

Transcript provided by YouTube (unedited)

0:00
[Music]
0:04
hi i’m amanda morin writer with
0:06
understood.org and a parent to kids with
0:08
learning and attention issues and i’m
0:10
lexi walters wright community manager
0:12
for understood.org
0:13
and we are in it
0:15
init is a podcast from understood for
0:17
parents on our show we offer support and
0:20
some practical advice for families whose
0:22
kids are struggling with writing social
0:25
skills motor issues and other learning
0:27
and attention issues and today we’re
0:29
talking about disclosure who we tell
0:31
when we tell and how we tell when it
0:33
comes to our kids learning and attention
0:35
issues
0:38
so amanda will you kick us off what is
0:41
disclosure what do we mean when we say
0:43
the word disclosure
0:45
disclosure is a really fancy way of
0:47
saying talking about it so when we’re
0:48
talking about our kids have learning and
0:50
attention issues it’s who do you tell
0:53
that to disclosure is deciding to tell
0:56
family it’s deciding to tell teachers
0:59
it’s deciding under what circumstances
1:01
it’s a parent’s job to talk about it
1:03
under what circumstances you throw that
1:04
to your child to make that decision so
1:07
disclosure is a really big idea right
1:09
it’s something we talk about a lot when
1:11
it comes to having kids with learning
1:13
and attention issues because there are
1:14
some circumstances where parents don’t
1:16
necessarily want to talk about it and
1:18
then there are other circumstances where
1:19
it’s really important to talk about it
1:21
and so when does disclosure come up can
1:24
you give us some examples of when you
1:26
need to make the decision as a parent as
1:28
to when or not to disclose
1:30
often it comes up in school first
1:32
because when a child is having trouble
1:33
in school or struggling or needs a
1:35
little support it’s time to start
1:37
talking about it with teachers so they
1:39
can help you figure out what support
1:40
your child needs right and sometimes
1:43
it’s about
1:44
coaches
1:46
in the community it may come up as well
1:48
and then i think as our kids get older
1:51
they need to start thinking about if
1:52
they’re going to disclose or talk about
1:54
this with their friends for example a
1:56
kid who struggles with reading may want
1:58
to say something before they go out to a
1:59
restaurant because reading that menu may
2:01
be a little tough for them too right
2:03
well you know we recently got a voice
2:05
memo from a mom that i think so
2:07
beautifully gets it how daunting this
2:10
process of disclosing can be
2:12
especially when it’s new
2:16
hi my name is emily um
2:19
i am very new to all of this i got my
2:23
son’s testing back recently and they
2:25
give you this big stack of papers with
2:28
all this information and i was
2:31
absolutely paralyzed
2:35
i felt like i did not know what to do
2:39
i didn’t know who to talk to who to go
2:41
to what my next steps were
2:43
and the background on this is that i am
2:45
also an educator of almost 20 years
2:49
and i have taught
2:50
kids with various learning and attention
2:52
issues
2:53
and i always thought well if you know
2:55
one of my kids ends up with an iep or
2:59
um issues in the classroom i’ll be one
3:01
of those great parents that you know
3:02
takes a deep breath and knows exactly
3:04
what to do and
3:06
and the fact was that i didn’t um
3:09
because it was
3:10
my
3:12
child
3:13
and i was scared and nervous and alone
3:18
and i just completely
3:20
shut down
3:22
and i had the reaction that i didn’t
3:24
want to have which was this is nobody’s
3:27
business but ours this is our family
3:29
this is my child nobody needs to know
3:31
about this and not nobody like teachers
3:33
need to know about this right but not
3:35
like
3:36
general people
3:38
and
3:40
that really shocked me
3:41
um and surprised me but that’s sort of
3:43
how i felt
3:45
[Music]
3:50
so we asked all of you how disclosure
3:51
has worked in your family and one dad
3:53
told us he falls solidly into the don’t
3:56
tell camp
3:59
there are times when i will tell people
4:01
obviously like teachers or people who
4:03
interact with them heavily but
4:05
it’s not something that i will say to
4:07
someone up front
4:10
a lot of it has to do with the social
4:12
stigmas that
4:13
reside around the various things like
4:15
adhd autism and learning disabilities
4:19
that people have and how they interact
4:21
with the people who have them
4:24
so
4:24
i want my child to be treated as any
4:27
other child is and as a result i don’t
4:31
tell people up front about it
4:33
so that they don’t attach those
4:36
labels to him they may
4:38
choose to avoid or shun him
4:41
because you know i don’t want to have to
4:43
deal with a child that has that
4:45
condition
4:46
[Music]
4:53
so clearly decisions around disclosure
4:55
are deeply personal for both parents and
4:58
for kids
4:59
right and on one end of this you’ve got
5:01
parents like the one we just heard from
5:03
and on the other end okay so
5:06
um
5:08
my name is ayelet i have uh three kids
5:11
my middle one leah is dyslexic
5:16
she’s currently 13
5:18
and she’s in eighth grade
5:20
she loves anything expressive everything
5:24
from art to dancing
5:27
speaking
5:28
anything that allows her to
5:31
express herself somehow is
5:33
what she enjoys
5:34
when we spoke to leah’s mom she was at
5:36
home in staten island and she and leah
5:38
were both just getting over the flu
5:40
leah’s dyslexia wasn’t diagnosed right
5:42
away though ayelet and her husband knew
5:45
something was up during the first few
5:46
years of school
5:48
so she
5:49
was
5:51
able to tell me everything about school
5:54
oh in science we did this and in this
5:56
class we did that and this was so cool
5:59
um and she would very happily discuss
6:01
whatever she was learning so we knew she
6:04
was learning but she wasn’t she was
6:06
failing everything
6:07
so
6:08
it never occurred to me that she
6:10
couldn’t read but um
6:13
it dawned on me one day when
6:15
i came home and i saw
6:18
she was attempting to do
6:20
a homework i guess she was kind of my
6:22
husband was home
6:24
um
6:25
and he was trying to help her with it
6:26
but what i had walked into was like a
6:29
screaming match i just can’t do it i
6:31
don’t know what to do
6:33
and she’s hysterical and he’s like you
6:36
know not yelling at her but like you
6:38
know that frustrated parent like just
6:41
copy what i wrote down
6:44
and i’m standing there and it was like
6:46
like a moment where like all time stood
6:49
still
6:50
you know i felt like i stood there for
6:52
20 minutes and it was literally three
6:54
seconds and i said oh my god my kid
6:55
can’t read
6:57
and in that moment what like what did
6:59
that mean to you
7:01
um i think i had a lot of thoughts at
7:04
the same time
7:06
um i distinctly remember saying how
7:08
could she make it to fourth grade and
7:10
nobody picked it up and i’m a teacher
7:13
it just i i felt so um
7:16
upset
7:18
angry you know how could i not know
7:21
things like that
7:22
ayela and her husband took leah to get
7:24
an evaluation and every
7:27
item
7:28
that identifies dyslexia she hit it
7:31
she hit every single one
7:33
[Music]
7:41
but this isn’t a story about dyslexia
7:43
right that was last episode
7:45
this one’s about how kids and their
7:47
families figure out when it makes sense
7:48
to share a diagnosis and when to keep it
7:50
private whether it’s dyslexia or a
7:52
different diagnosis for leah and her
7:54
parents the process of figuring that out
7:56
started pretty much the minute they
7:58
walked out of the doctor’s office after
7:59
getting the diagnosis
8:01
we live on staten island and we had
8:03
taken her to manhattan for the
8:05
evaluation for the neuroscience
8:07
and just where it was i we ended up
8:09
taking an express bus it was just easier
8:11
than driving and finding parking
8:13
so we had like an hour
8:15
bus ride home so we were on the bus and
8:17
she was like oh you know i get it but
8:20
i’m really embarrassed she’s like do i
8:21
have to tell people
8:23
so i told her it was up to her i said
8:26
you know there’s positives to being open
8:28
about it and then there’s
8:30
maybe negatives too
8:32
but you have to do what feels right for
8:34
you and you may want to keep it quiet
8:36
for now
8:37
and then later
8:38
tell people
8:40
so she got very very quiet and didn’t
8:42
say anything for a few minutes she was
8:44
just kind of looking out the window and
8:46
she said okay i need to think about it
8:48
and i said okay
8:49
fast forward a few weeks leah hadn’t
8:52
said much more about the diagnosis she
8:54
was just kind of doing her own thing so
8:56
she had been
8:58
like journaling for a while i guess
9:02
she had asked me for a folder got her
9:04
folder she filled it with paper and she
9:06
would walk around the house like hugging
9:07
it
9:08
and it she would keep it in her room and
9:10
i just didn’t question it because you
9:11
know kids stickers papers folders you
9:14
know
9:16
but after
9:17
maybe
9:18
three weeks two weeks i don’t even
9:20
remember she’s like
9:23
guess what
9:24
i said what she goes i wrote a book
9:27
i said you did not she goes no i wrote a
9:29
book i really did and i said
9:32
okay can i see she’s like no but
9:37
can
9:38
you type it for me if i read it to you
9:41
and i said sure so we sat at the
9:43
computer i typed she read
9:45
and i’m sitting there and i’m like
9:47
okay wow
9:49
[Music]
9:52
in those pages leah and her mom typed up
9:54
she had written about her experience
9:56
with dyslexia and how what she
9:58
understood and how she performed in
10:00
school never seemed to match up for her
10:02
leah also wrote about what she was
10:03
learning about dyslexia and she wrote
10:06
about how she could stick up for herself
10:07
when her teachers didn’t seem to get it
10:10
so ayelet printed out the pages and then
10:12
leah pasted them into a blank notebook
10:14
and added illustrations and those
10:16
illustrations are so cool they’re
10:18
cartoons about her thought process their
10:20
cartoons about what it was like to be in
10:21
school really neat
10:24
leah thought other kids kids like her
10:26
might like to read the book and she
10:28
asked her parents if they could publish
10:29
it
10:31
uh we decided to just go ahead and do it
10:33
and kind of see what happens
10:36
and that’s how dyslexic renegade was
10:37
born i’m leah nine and in the fourth
10:40
grade i wrote this book when i found out
10:42
i was dyslexic because i thought there
10:44
was something wrong with me and there
10:45
isn’t
10:46
i don’t want other kids to think like i
10:48
did this means difficulty in
10:51
greek and lexus means words in greek so
10:56
all it really means is that one person
10:58
has a hard time with
11:01
anything that has to do with words but
11:03
it doesn’t mean we aren’t smart
11:05
leah’s self-published book has had
11:07
hundreds of downloads she now hosts a
11:09
facebook page for kids with dyslexia
11:11
that has over 10 000 followers people
11:14
started like emailing messaging calling
11:17
like on facebook
11:19
people everywhere were like like oh my
11:21
god this is amazing like this is just
11:23
like my kid and
11:25
you know and we were like okay wow all
11:27
right
11:30
[Music]
11:43
hey it’s lexi and from time to time
11:45
we’re going to try something new on init
11:47
starting now
11:49
the response to our show so far has been
11:51
amazing we are so grateful to you our
11:54
listeners for the reviews you’ve left
11:56
and the friends and the teachers you’ve
11:57
told about our show
11:59
we love hearing that in it feels to so
12:01
many of you like you’re hearing your own
12:03
family’s experience described
12:06
so we want to share some of the
12:07
incredible messages you’ve recently left
12:09
us about our first episode why we cry in
12:13
iep meetings
12:14
[Music]
12:17
i
12:18
get very emotional easily very easily
12:22
and i can feel it coming on and i’m
12:24
always thinking no don’t do it don’t do
12:26
it i just can’t help myself
12:29
um i think a lot of the crying comes
12:31
from a place of
12:33
um
12:36
see i’m gonna get emotional just talking
12:38
about it
12:39
um
12:40
but anyway i think i just get to
12:42
thinking about my son
12:44
and
12:45
all the kind of what ifs and what could
12:48
have been
12:49
um so sometimes that does make me a
12:51
little sad
12:54
[Music]
12:56
so
12:57
at the beginning i didn’t cry at iep
12:59
meetings but now at the end i’ve been
13:01
through so many
13:03
that sometimes i can’t help myself
13:07
being an educator i know i know what to
13:10
ask i know what to look for and
13:13
even still you know i think about all
13:15
the families who
13:17
just
13:19
go along with whatever is said in those
13:20
meetings um and don’t ever
13:23
feel like they need to question or
13:24
really advocate for their kid because
13:26
they really don’t understand
13:28
you know all of the lingo and all of the
13:30
language and
13:32
um you know it’s intimidating even for
13:34
me
13:35
being an educator for
13:38
you know over 15 years so
13:40
anyhow it gets emotional um
13:43
and
13:44
it sucks to feel like your
13:46
kids not being fully supported
13:50
and one more thing since this episode
13:52
aired we’ve created a new understood
13:54
video with dina blizzard the mom in
13:56
episode 1 of init
13:58
dina talks more about her daughter’s
14:00
learning issues and the path to
14:02
understanding that anxiety was at the
14:03
center of many of her struggles
14:06
check out that video at u.org dina
14:09
that’s the letter u dot o-r-g
14:12
d-e-n-a and now back to the show
14:20
so as we’ve seen in leah’s case learning
14:23
how to share this thing about herself
14:25
with other people happened really
14:27
quickly
14:28
but amanda i guess i’m curious is that
14:31
typical
14:33
i don’t know that it is typical it’s
14:35
really amazing to me that leah not only
14:37
wanted to talk publicly but she wanted
14:40
to talk very publicly about it all of a
14:42
sudden
14:46
hello this is sarah from omaha um
14:49
one time where we did not disclose
14:52
information
14:54
about my child’s disability was with my
14:56
middle son who was going off to college
15:00
we chose not to disclose his diagnosis
15:03
as twice exceptional
15:05
with adhd and slow processing
15:08
he was able to get by in high school
15:11
because of how smart he was but once he
15:13
got to college he really struggled
15:15
after failing english 101 twice
15:19
his self-esteem plummeted
15:21
and we finally got him on medication and
15:25
started with the disability services at
15:27
his college however his last term of his
15:30
freshman year came around and he had an
15:32
instructor who wouldn’t work with his
15:34
disability services they were put in
15:36
place and he ended up losing his
15:38
scholarship had we disclosed
15:41
his disability to begin with i think
15:43
that
15:44
his freshman year of college would have
15:46
been a completely different experience
15:49
for him
15:51
wait so amanda you send your kid off
15:54
maybe to college or to live
15:55
independently or whatever and you’re
15:57
still not out of the woods with
15:59
disclosure stuff
16:00
nope
16:02
especially because that’s the point when
16:04
you’re really passing the torch if you
16:06
haven’t already because out in the world
16:09
when your child’s an adult legally an
16:11
adult it’s it’s going to be up to them
16:13
to figure out how and when to talk about
16:14
these issues
16:16
and the question is how do you do that
16:18
prepared scripts don’t work very well
16:21
manju banerjee is the vice president of
16:23
educational research and innovation at
16:25
landmark college a school specifically
16:27
for students who learn differently
16:29
and she says going out into the world on
16:31
your own brings a whole host of new
16:33
challenges around disclosure you are
16:35
trying to present your best persona if
16:38
you will to
16:39
to be attractive to others and you’re
16:42
starting to think about
16:44
life mate you know it’s the adult stage
16:47
of one’s life right so at that stage to
16:50
have to disclose well you know i have
16:53
learning issues or i process information
16:56
slowly or
16:57
i can take you out to a date but i need
16:59
more time to calculate the tip
17:01
it can be really embarrassing in some
17:04
cases manju says our kids may decide not
17:07
to disclose and we have to let them make
17:09
that choice
17:10
i think one of the things we need to do
17:12
and get talking about disclosure
17:15
uh we as adults and educators really
17:19
need to put ourselves
17:20
in the shoes of the young adult or the
17:23
child
17:24
and understand
17:26
where that reluctance is coming from and
17:29
you can’t force
17:30
self-advocacy you really need to create
17:34
a safe environment
17:36
where self advocacy can be practiced
17:39
organically
17:40
and have successful moments so let me
17:44
ask you a question as a parent i can
17:46
create the safe environment in my home
17:49
right and i can create it around them
17:51
yes
17:52
what do i do to make sure that they are
17:54
ready to be in a world that may not feel
17:57
as safe to them
17:59
i think as parents the hardest thing for
18:01
us is to let go
18:04
is to let go that end of the rope
18:07
uh because we’ve created that safe
18:09
environment at home
18:11
we know when to jump in and help out
18:14
but i think it’s important for us to
18:16
have that confidence that i’ve built a
18:19
solid foundation
18:21
and there will be occasions where
18:24
my son our daughter will do things that
18:27
absolutely illogical that make no sense
18:30
and that’s doomed for failure
18:33
and just have to stand back and let that
18:35
process happen because that’s how we
18:38
learn
18:43
let me just hang the group and see if i
18:45
can
18:46
push it back a little bit so hold on
18:48
give me one second
18:49
wilson standish has very much launched
18:51
into his adulthood he works in the
18:53
advertising arm of gimlet media and if
18:56
like me you’re a podcast junkie gimlet
18:58
probably is familiar he spoke to us from
19:00
his office between meetings wilson has
19:02
dyslexia but it’s not something he
19:04
shares with people right off the bat
19:06
especially at work
19:07
first he says he needs to build a
19:09
relationship
19:11
definitely yeah yeah because i don’t
19:13
want my first impression to be
19:16
dyslexic for some reason right so it’s
19:19
not like you put it at the top of your
19:20
resume as special skills no no not at
19:23
all
19:25
that said once he’s had a chance to
19:27
build up some trust he’s okay if his
19:28
dyslexia comes up organically it usually
19:31
comes before i have to do a brainstorm
19:34
with a group and write on a whiteboard
19:36
and that’s when i say it and it’s it’s
19:39
only after i feel like i’ve earned trust
19:42
to people so they’re like oh it doesn’t
19:44
matter we can trust him he’s smart he
19:46
does great work and and those are the
19:48
moments where i feel comfortable doing
19:50
it
19:51
and what do you say
19:53
you know i i kind of just say like hey
19:55
i’m really dyslexic and i just move on
19:57
and i don’t really like dive into it um
20:00
because my hope is at that point that
20:03
the work that i’ve done and i’ve
20:05
produced
20:07
it it doesn’t even matter to them the
20:09
fact that that i’m dyslexic
20:11
and it only comes up at times when
20:15
i’m writing emails and i’ll i’ll totally
20:19
miss something that you know
20:21
can sound really bad like one time i was
20:23
writing we you know i used to run an
20:25
innovation group and i was writing about
20:27
a hackathon that we were trying to have
20:29
with the company and so i wrote this
20:31
email to like 30 people and the subject
20:34
said hackathon
20:35
and everybody you know had a lot of fun
20:37
with that
20:39
and it’s those moments where you know
20:41
it’s embarrassing but you just by
20:43
getting ahead of it and owning it i’ve
20:46
found you know that it’s okay and then
20:48
knowing that i have to just work a
20:49
little harder to make sure that i
20:51
outshine those uh those moments
20:55
oh amanda hackathon
20:57
i know we all make those mistakes right
21:00
autocorrect is is our enemy at that and
21:03
we laugh
21:04
but if like wilson you’re someone with a
21:06
learning issue those moments can feel so
21:08
much bigger
21:10
do you feel like you’ve been more
21:11
forthcoming in your professional
21:13
experiences than your personal life
21:16
yeah i think so just because you know in
21:19
my personal life i don’t really have to
21:22
write in front of people um or read
21:24
aloud and those are the moments that are
21:27
kind of the most intimidating it only
21:29
really comes up now when i’m you know
21:31
driving or giving directions and i mix
21:33
up my left to my right
21:36
yeah
21:38
but yeah no i don’t really
21:40
you know i don’t really think about it
21:42
as much and i i just i guess like while
21:44
i know it’s present and i know
21:47
i have to work through it continuously
21:49
it’s something that hasn’t necessarily
21:51
like been a defining thing that i think
21:54
about all the time
22:02
ai ella can you tell us
22:04
what advice do you have for parents and
22:07
for kids who are just starting to find
22:10
their way when it comes to sharing their
22:12
learning and attention issues
22:18
i don’t know i think it’s so different
22:20
for everybody
22:22
for us it worked to talk about it a lot
22:25
and often and just put it out there
22:26
because it is what it is
22:28
you know when you talk about it you are
22:32
also teaching other people who may not
22:34
be aware
22:36
and people
22:37
may
22:38
show you their ignorant side
22:40
um and you have to
22:42
not take it to heart
22:44
i yell it’s right choosing when and who
22:46
you disclose to is different for
22:48
everyone which reminds me remember emily
22:50
that great mom who we heard from at the
22:52
beginning of this episode she was the
22:54
one who was drowning under the pile of
22:56
papers from her son’s diagnosis and she
22:59
was not sure if she wanted to tell
23:01
anyone about it right so she actually
23:03
had more to say on this
23:06
so i’ve been taking baby steps and i’ve
23:08
had some really great friends help me
23:11
um let me practice with them and saying
23:14
oh this is really helpful for him when
23:16
he gets anxious or this is a little
23:18
thing that we do to help him
23:20
in certain moments and it’s
23:23
felt empowering
23:24
and
23:25
um
23:26
made me feel less alone
23:28
and has helped him feel
23:31
like he he knows himself better because
23:34
at the end of the day this is really
23:36
about him gaining the skills and
23:38
confidence to move through the world
23:40
and i need to be there for him
23:43
thank you so much that’s it bye
23:46
[Music]
23:48
you know as another mom who’s done that
23:51
that’s a big deal like she’s not 100
23:54
comfortable she’s ready to talk about it
23:55
yet but she’s doing it for him
23:57
that that’s a big step
23:59
so amanda i just love that emily
24:02
mentions practicing with a friend which
24:04
just seems like such a solid
24:07
way of making this more comfortable for
24:09
families but i imagine that there are so
24:12
many instances in which families have to
24:15
make the call on the fly
24:17
and in some of those cases
24:19
do you maybe not disclose period
24:23
yeah i mean there are times we heard
24:25
from the dad in the beginning of the
24:27
show who says he doesn’t talk about this
24:29
and that’s totally fine they’re all of
24:31
these variations right lexi i mean
24:34
emily practices with a friend but we
24:36
don’t know who else she’s told beyond
24:38
that yet and that’s totally fine and are
24:40
there circumstances in which you still
24:43
will keep this information private for
24:45
your family
24:46
i’m not telling you that
24:48
[Laughter]
24:52
[Music]
24:55
you’ve been listening to in it a podcast
24:58
from understood for parents our website
25:00
is understood.org where you can find all
25:02
sorts of free resources for people
25:04
raising kids with learning and attention
25:05
issues
25:06
we would love to hear how your family
25:08
has tackled the disclosure minefield go
25:10
to you.org podcast to share your
25:13
thoughts and also to find free resources
25:16
that’s the letter u as in understood.org
25:20
podcast
25:21
and if you like what you heard today
25:23
please tell somebody about it it’s a way
25:25
to start talking about disclosure share
25:27
it with a friend or just a parent at
25:29
your bus stop you can also go to apple
25:31
podcasts and rate us which is a great
25:32
way to let other people know about init
25:35
you can subscribe to init on apple
25:36
podcasts follow us on spotify or keep up
25:39
with us however you listen to podcasts
25:42
between episodes you can find understood
25:44
on facebook twitter pinterest and
25:46
youtube or visit our website you that’s
25:49
letter you dot org
25:51
and come back next episode when we’ll be
25:53
talking about why math struggles can be
25:54
so much more than anxiety about messing
25:56
up your times tables init is a
25:58
production of understood for parents our
26:00
show is produced by blake eskin of noun
26:02
and verb rodeo julie subrin and julia
26:05
botero mike erico wrote our theme music
26:07
and laura kushner is our director of
26:09
editorial content
26:11
thanks for listening everyone and thanks
26:13
to those of you who sent in voicemails
26:14
and voice memos and thanks to all of you
26:17
for being in it with us
26:24
[Music]
26:40
you

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This post was previously published on YouTube.

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