July 15, 2025 • 32 mins
What if you suddenly experienced the sensory challenges your autistic child faces every day? Jacki Edry's life took a dramatic turn when doctors discovered a massive tumor on her brainstem. After surgery, she woke to a transformed reality - faces appeared to melt, floors became disorienting patterns, and everyday sounds overwhelmed her completely.
This remarkable conversation explores Jacki's extraordinary journey from being solely a parent and advocate for her autistic son to experiencing neurodistinctness firsthand. As the author of "Moving Forward: Reflections on Autism, Neurodiversity, Brain Surgery and Faith," Jacki shares how this dual perspective revealed insights that transformed her understanding of neurodiversity.
The most eye-opening aspect of Jacki's story involves the four years she spent virtually homebound with severe visual processing issues that numerous medical professionals couldn't identify or treat. The solution, when finally discovered, was shockingly simple: custom-colored spectral filters that immediately corrected her visual disturbances. This paralleled her children's experiences, who struggled with reading for years until colored lenses revealed they had been seeing words move across the page all along.
Jacki passionately discusses why parents must trust their instincts and continue searching for answers when conventional approaches fail. "Don't ever accept when a professional says there's nothing you can do," she advises, highlighting how solutions like Irlen Syndrome testing remain largely unknown despite their life-changing potential for many.
For anyone parenting, teaching, or supporting neurodistinct individuals, this episode offers rare insights into sensory experiences that are often difficult to understand from the outside. Jacki's story reminds us that sometimes the most powerful solutions aren't found in traditional medical settings but through persistent advocacy and openness to unconventional approaches.
Discover more about Jacki's work and upcoming projects at jackisbooks.com, and consider how her experiences might illuminate challenges faced by the neurodistinct people in your life.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:02):
Hi, thank you for joining the SG Child show today.
I am so excited to bring aspecial guest and I mean,
everybody is a wonderful special.
But Jackie and I connected awhile back and I just we both
have such passion and, um, Ijust want to hear and share her
(00:28):
stories with you.
Um, without giving too muchaway or anything, please just
introduce yourself and let usknow a little bit about you and
we'll go from there thank you somuch for having me.
Speaker 2 (00:42):
I'm excited to be here and I'm excited to see you
again and to speak with everyone.
Hopefully our conversation willbe interesting and informative.
And here we go.
So my name is Jackie Edry.
I grew up in the States and Ilive in Israel.
I've been here for many, manyyears and I am an author of the
(01:04):
book Moving Forward Reflectionson Autism, neurodiversity, brain
Surgery and Faith, and I have ablog and an educator, part-time
consultant, things like thatspeaker and I have everything to
do with neurodiversity and Ihave my oldest son is autistic
(01:25):
and I have other neurodivergentkids.
Neurodistinct actually is a termI prefer, and I myself I'm very
neurodistinct as 12 years, 12.
Yeah, just recently, 12 yearsago, I had a massive tumor
discovered on my brainstem andhad surgery, and when I woke up,
(01:47):
all of my senses were scrambledand that changed my reality.
And so I went from being aparent, caretaker and educator
working with neurodistinctindividuals to also being more
neurodistinct than I wasbeforehand, to also being more
neurodistinct than I wasbeforehand.
Wow, and after that experience,I realized I gained insights of
(02:10):
being on both sides of the coin.
I decided to write a book toshare those insights that I
gained throughout thatexperience in order to help
others, and so, in 2021, Ipublished my book and since then
, I've been looking up withpeople from around the world and
speaking whenever possible andtrying to get my message out, to
(02:32):
help improve the lives ofpeople who are looking for more
information and differentperspectives.
Speaker 1 (02:40):
And so much of that is necessary and needed.
And so much of that isnecessary and needed and to be
(03:10):
able to have it come from suchan authentic viewpoint, which I
can completely relate to, as faras being on one side of being a
parent and then getting my owndiagnosis and seeing, wow, there
is so much more here than I hadrecently realized and what a
powerful, powerful gift to beable to share with families and
educators.
Like you said, tell us a littlebit about what um and you know
some of my viewers from theinternational events.
They may know from otherspeakers, but tell us a little
(03:32):
bit about what it's like inIsrael, what the um, I guess
society's viewpoint on autismand maybe the parent support.
What does that look like?
Speaker 2 (03:47):
Well, it really depends.
Israel is a very, very diversecountry.
We have people from alldifferent walks of life and all
different religions, so there isdefinitely no one answer for
that.
It depends totally on thecommunity.
Also, in terms of, let's say,if in the jewish community, I'm
a religious orthodox woman, um,but it depends on the community
(04:09):
you're in, because each type ofthe community, or different
levels of uh, of uh keeping thefaith, uh, have different um
perspectives per se In terms ofeducation and in terms of
availability, government supportand all this.
(04:31):
We're definitely pretend we'rea very modern country, but we do
have a long, long, long, long,long, long, long way to go in
terms of availability andquality treatment, particularly
in the educational system, sothat I'd say, comparing to
(04:54):
America, there's probably we'rebehind for sure.
One thing about the Jewishreligion, though, if you are
practicing in any way ormaintain the faith, is that I
believe every soul has come downto this earth for a particular
(05:16):
reason.
So if God made you, whatever itmay be, adhd, they're distinct
in any way, shape or form or anykind of whatever, it doesn't
matter what it is, but that'sthe way you're supposed to be so
many communities having thatbeliefs, then they can be, uh,
(05:39):
more inclusive, yeah, or moreaccepting.
It really depends.
Like I said, we have been veryfortunate that that's the
attitude that people have had inour communities and in our
synagogues.
So my son, who was notparticularly verbal,
(06:00):
particularly when I was youngand he needed very high supports
, was always, always acceptedand considered as part of the
community, and now, as a youngadult, he was very much part of
the community and lovedWonderful.
Speaker 1 (06:18):
Yeah, you're so right too, and every community is so
vastly different in theirbeliefs and their support that
they can give, receive theeducation that they have.
And there's a lot of workaround the world to be done,
that's for sure.
Oh my goodness.
Speaker 2 (06:38):
We're definitely backwards in terms of inclusion.
We are way far behind.
I mean, my son was an inclusive, inclusive education, but I had
a real hard time with it andunfortunately the the one-to-one
assistance here do not receiveum.
First of all, thequalifications to be a
one-to-one assistant are not onpar with what like what, what I
(06:59):
saw in the american system, andthey do not receive the training
that they need either.
So it is very much, extremelydifficult to do inclusion here
in the educational system yeah,and I you know I would have no
idea how to go about.
Speaker 1 (07:15):
Like where, where do you go to get that change?
Speaker 2 (07:20):
like you know what kind of government programs,
agencies, agencies you know, Ijust thought all the years my
kid was in school and I Itrained and I I had a fight.
I just had a fight like crazy,but it's tiring, but I did it
anyway because I knew that wasthe where I wanted him to be and
that's where I believed hewould most benefit.
Speaker 1 (07:41):
So yeah, and it sounds like he did, if he's, you
know, in the community, lovedby the community and everything,
and that's wonderful.
No, question.
Speaker 2 (07:52):
it was good for him, but it's not for everybody.
Everybody has their own path,you know.
Speaker 1 (07:56):
Yeah, it's tricky.
That's a tricky thing forpeople that are just beginning
their journey, people that havebeen on it for a long time, to
recognize that everybody's at adifferent place and we just have
to honor that individual, thatparent that you know, therapist,
that educator, whatever,wherever they're at in in the
(08:18):
space that they're at.
Um, how did you um start?
When did you know you wanted toadvocate write the book thing?
You know, when did that startfor you?
Speaker 2 (08:34):
Well, it started the book after my surgery.
But my advocacy started many,many, many years ago when I was
in high school I volunteeredwith an autistic child and we
did a home program with a verychild-centered, lovely program
with a beautiful kid, and thatwas a long, long, long, long
(08:54):
time ago.
And then in college I alsoworked with autistic kids in
summer camps and they were alsovery natural settings doing,
even though they werepractically nonverbal.
Most of the kids I was workingwith we did stuff teen, we did
whitewater canoeing, we did allkinds of fantastic stuff with
(09:15):
them.
And then after that I tried todo my thesis about how exercise
would help reduce stimming,because I noticed that was
happening in an intensive sportenvironment that we're in in
(09:35):
summer camps.
And I got a job at a school todo my thesis a happier program
that I would be researching andit turned out that it was a
behavior modification school,which is ABA in the newest form,
but at the time it was calledbehavior modification talking in
(09:56):
the late 80s and I realizedthat it wasn't for me.
I did not believe in that wayof working with children.
It was totally opposite ofeverything I'd done.
So I wound up changing mythesis to address that issue and
educational different ways ofeducational, but a more
(10:18):
child-centered approach.
And from that I moved to Israeland then, a number of years
later, I got married and then Irealized my son.
When he was about two, Irealized that he was either deaf
or autistic.
So we did a hearing test andrealized he wasn't deaf.
And right at that point Irealized that I had to advocate,
(10:43):
because if I didn't then hewould not have the services he
needs.
So I started doing that andthen we put him in an inclusion
program.
We realized people didn't know.
It was just they just passed alaw enabling inclusion in Israel
at that time and he's 27 now.
Right, so it was quite a whileago, but it was a brand new law.
(11:05):
They weren't even doinginclusion and nobody knew what
they were doing.
So at that point I startedtraining teachers and doing
advocacy there because, in orderto ensure that he got what he
needed and and the people knewwhat they were doing, I started
working with that, with them.
So, and that went on, parentsneeded support and then,
naturally, I I started running aparent group and stuff way back
(11:27):
when, um, but after I woke upfrom my brain surgery, I
realized that I had insights,because I was no longer just the
advocate or the parent.
I realized that people don'tunderstand what it feels like to
be living with.
Let's say, I have a lot ofproblems with sensory processing
(11:49):
and a lot of hypersensitivity,particularly in the auditory
channel.
I had an unstable visual fielduntil I got earling spectral
filters, which gave me my lifeback after four years that I
practically didn't walk out thedoor because I had so many
visual disturbances.
So I realized that people don'tknow what it feels like and
(12:16):
oftentimes they are frustratedor they think a kid is lazy, not
trying enough, or why is theytantruming?
Or you know why are they havingsuch a hard time?
There's nothing that seemsannoying.
I don't know why they cry forno reason, all this kind of
stuff.
I said wait a minute, I got toexplain this, I've got to talk
about it because I know whatit's like to be on both sides.
I know what it's like toobserve that and think, well,
(12:37):
why is my kid tantruming?
I don't see anything unusual.
And then suddenly I live withthe experience and suddenly this
noise that no one's payingattention to is making me insane
.
Or somebody's perfume, orsomebody's face looks like it's
melting when I look at them,even though you know it's not
happening, but it's all in mybrain.
But it's melting when I look atthem, even though you know
there's it's not happening, butit's all in my brain, but it's
(12:58):
scary.
So, as an adult and as a personwho was not living with that
beforehand, I could alwaysreason with myself and say well,
um, you know, that's not realwhat you're imagining.
But if I had been a child andhaving those things happen to me
, I would have been terrifiedand so I would have tantrumed
and I would have fled, andpeople don't understand this.
(13:19):
So I decided I have to write abook about that experience, to
get that knowledge out, to helpimprove, like I said, improve
the lives of those who need it,and many, many parents when
their child's first diagnosedand you certainly know that I,
uh, I did so much onlineresearch and people, people are
(13:41):
looking for information, becausethe medical system just gives
you the diagnosis and they sendyou home and you go.
Well, what now?
The pamphlet?
Yeah, I didn't even get apamphlet, oh gosh.
But I knew I, I had background,but but that doesn't tell you
anything, yeah, so I wanted toget information out there, give
people practical information andtools and understanding.
(14:04):
So that's been my mission sinceand still is.
Speaker 1 (14:07):
I love that and it's so important.
You know, I me and my heredityactually we have outer ear
microtia which actually gives meum and I probably have, um you
know, sensory, a lot of sensorythings also but, yeah, it's
(14:29):
called outer ear microtia andjust basically means that
they're like smaller formed.
But for in that I have and I'vehad some testing done I have one
second longer hearing in eachear than typical people.
(14:51):
But it's also with super highpitch which hurts, and you can
appreciate.
Not many people understand thatand when I was I and I may have
told you this last time that wetalked but when I was a kid,
the in the 70s, the garbagetrucks didn't have the air
brakes, you know, or anything,and they would come into my
(15:12):
neighborhood and I would cry andI would cover my head and I
would run into my room and hide.
And it wasn't until, like maybein the last five years, that I
recognized my fear of garbageday, my fear of garbage day.
And my husband, you know, wetalked about it and he said you
(15:33):
realize that, like you're inyour forties, we don't need to
be afraid of the garbage man.
Speaker 2 (15:39):
And I really like understood wow, this has really
affected me for so, so long now,and I never, I never realized
it.
And so, yeah, now I'm, now I'mokay.
Speaker 1 (15:53):
That's amazing, though, that you've put the
pieces together now.
Yeah, oh it, it and it's all.
You know that knowledge, likeyou said, it's so important.
It's so important for theseparents to understand when your
kids covering their ears orsomething, it's not out of
rudeness or out of, you know,disrespect, or they don't want
to listen or anything.
Speaker 2 (16:13):
Um, look away they don't need to have visual
disturbances because the personthat has that doesn't know that
they have it.
They don't know there'ssomething wrong.
They think everybody's likethem, especially children.
They they that's right, sothey're not going to come and
tell their parent.
You know, this is annoying me.
They think everybody hears thesame thing and they, they don't
(16:34):
know that people don't seedouble or or the faces don't
melt, or you know, I mean that'swhat I I discovered when I took
my kids for an earlobeassessment.
They were diagnosed withseveral of them with dyslexia
and adhd, and and what turns out?
They had earlobe syndrome andand um and auditory processing.
(16:56):
Irlen syndrome is is a problembreaking down white light and
it's corrected with collegespectral fictures, if you get an
earlobe, um, but so that thethings would look like, uh,
things were moving around thepage and you know it looked like
dyslexia, um, and they couldn'tread.
(17:17):
But they they weren't.
They didn't say what they wereseeing, because, and no one
asked in a didactic assessmentpeople do not ask that as well,
which is crazy, right, but theydon't ask them.
Are the letters moving or thepage turning colors?
You know all kinds of thingslike that, um, which they do in
a neural assessment, um, andthey don't know to tell you
because they just think it'sregular.
So that's an important thingfor parents to be aware of.
(17:42):
You should ask if the child isverbal and can't communicate,
how they see things or how theyhear things, or try and
understand the sensory thing,and help, give them the words to
express, and then you can see,you know, if they tell you well,
the road goes up when I walk,or something which is actually
what happened to me, or thingslike oh, really, you know they
(18:05):
wouldn't have occurred to themto tell you that and you can get
that information and find toolsto help them.
Speaker 1 (18:13):
Thank you so much.
That's just so valuable becauseI even my own kids I don't know
if I've ever asked them thatsame thing so that's great.
I love curiosity.
I love to want to know more,especially about you, know
experiences and things, so Ireally appreciate that.
Let's go back to before you hadthe tumor.
(18:36):
What prompted you to go get itchecked out?
What was the signs for you thatyou needed to go get it looked
at?
Speaker 2 (18:49):
I was feeling exhausted all the time.
I was just feeling like a carcar, like the gas was running
out, starting to like putter.
I was very, very tired and Iwas getting, um, a stiff neck.
I just I just felt likesomething was wrong and I got
(19:10):
went to the doctor over and overagain and they couldn't find
anything.
My blood work was perfect, uh,and all this other stuff, but
they weren't finding anything.
And then I started doing some ofmy hearing, and that was
probably what saved my life isthat my hearing on my left side
was becoming, um, it was innormal range, but I didn't
(19:33):
understand what people weresaying to me.
It sounded like people weretalking to me through a wad of
cotton or something, orunderwater.
Uh, one moment one and I wasunderwater, sorry, and and I
couldn't.
I just couldn't understand.
And it just kept getting worse,although my testing was hearing
(19:55):
is in normal range, like it's adeveloped, very severe auditory
processing disorder in my leftear only, and so, after about a
year of complaining that it wasgetting worse and worse and
worse, uh, my ENT sent me for anMRI and discovered a whopping
tumor on my brainstem.
Uh, that had probably been therefor 10-15 years.
Wow, it was huge, I mean, for abrainstem.
(20:19):
It is a very, very small partof the brain and I had a five
centimeter round tumor on it andall my nerves were involved in.
It was just one half a second,please.
Yeah, you're absolutely fine.
It was just one half second,please, sorry.
(20:41):
Yeah you're absolutely fine,nice, right.
Yeah, so, and my nerves wereinvolved.
It was very um powering.
So within within like a coupleweeks after receiving the
results, the MRI was already onthe operating table.
(21:02):
Yeah, I'm lucky.
I'm lucky that I couldn't hearmy left ear, because otherwise
it probably wouldn't be here.
Speaker 1 (21:09):
Oh, my goodness.
Speaker 2 (21:10):
Yeah definitely.
Speaker 1 (21:12):
And then you woke up and what was it?
You realized and recognizedfirst what was off.
If you could say or I don'tknow, I guess now that the tumor
is removed, my doctor told me.
Speaker 2 (21:29):
my surgeon said I was going to feel that way and he
was not exaggerating.
It was that painful everything.
And because they tinker in yourbrain, then my, my brain,
fortunately my cognition was notaffected, but everything else
was, and I.
I had a really long surgery too.
It was like 11 hours, I think,or 12 hours.
(21:51):
And then I slept, I think, foranother 24 or so.
Fortunately, when I woke up Iwas no longer intubated.
I started breathing on my ownand they took out the tube
because that wouldn't have beenfun.
But everything was off.
I just, my body wasdisorganized.
(22:11):
I didn't know how to.
I had to relearn how to walkand probably talk, and didn't
realize.
Very quickly, and in the ICU Irealized I was having problems
swallowing.
They told me I might.
Very quickly In the ICU Irealized I was having problems
swallowing.
They told me I might.
I do have damage on one of mynerves On my left side.
(22:34):
I can't swallow properly, Idon't.
At the time I didn't realizethat I really had problems.
I couldn't swallow, that.
I realized very quickly that Iwas having problems.
I couldn't eat or do you know.
So that I realized very quicklythat I was having problems.
You know I couldn't eat or doanything like a normal person,
or walk.
(22:55):
But then I realized prettyquickly that something just
seemed really off.
I didn't know how to explain it.
When they would push me in awheelchair I would just get so
dizzy and it didn't seem like avestibular thing.
I know I do have the damagedvestibular nerve on that side,
but it was just something off.
I would get dizzy andeverything just looked weird.
(23:17):
And that was already like whileI was still in the hospital.
And that was what turned outthat, as a result of surgery, I
had severe problems.
Light in the hospital, um, Ididn't know, it was lights at
the time.
It took me a really long timeto figure out that that was the
deal, yeah, but everything wasblurry and I lost my, my depth
(23:39):
perception, which is very weird,because I knew things were
farther away from me, let's say,but I couldn't judge how far
anything was, because every Igot 2d vision right, yeah, um,
and then staircases would spinaround and all kinds of things
like that, uh, and and thelights would dance across the
ceiling and the, the lines andthe tiles between tiles on the
(24:03):
floor become parallel lines andand the streets would go up
things.
Um, it's just all visualdisturbances, uh.
And then I realized the hospitaland it didn't go away for four
years.
I went to opt ophthalmologist,I went to neurologist, I went to
neuro-ophthalmologist.
Nobody knew or could put afinger on it.
(24:23):
They were not.
I don't know what they thoughtI was imagining.
And then I got a colored lens.
I went to an earlend provider,irlencom.
She put a finger on it.
They were not I don't know whatthey thought I was imagining.
And then I got a colored lens.
I went to an airline provider,irlencom she put a colored lens
in front of my eye and all ofthat went away immediately.
Wow, and not one person, notone professional.
And I was hunting, I couldn'tfor four years.
(24:43):
I could barely walk out thedoor, you know, and I couldn't
even ride in a car because Iwould get nauseous, I would get
vertigo and color color.
That's it, a custom coloredlens.
And it went away.
And I would think that you know, telling professionals these
things, everybody would just run, run.
(25:10):
Whether they saw a person had afirst or second grader having,
uh, reading issues, or somebodylike me, um, they would first
immediately tell them to geturine tested and they don't even
, because it's not mechanical,they don't try and refer, even
refer people, they don't eventry to learn more about it, they
just poo-poo it.
Yeah, yeah, absolutely.
I've been to so many educatorsand so many doctors and so many
(25:31):
professionals and they do notwork.
Sorry, shh, sorry, someonewalked in the door.
You're good Noisy doggies.
Speaker 1 (25:43):
No, that that must be so frustrating and I I just
can't.
It's so hard that there's notsome sort of like everybody
could well now AI hopefully willwill help us figure those
things out a little bit quicker,but you know that there's not
somewhere doctors can have thisinformation to share with you
(26:12):
and then school principals theysaw in my case, once they they
got diagnosed and they werehaving one was 11th grade and
had serious problems reading.
Speaker 2 (26:17):
Fifth grade could not read.
They had years of remedialinstruction that didn't work.
And then they got them coloredlenses and they started reading.
Yeah, like immediately, um, andyou know they knew technically
what to do, but within 10minutes everything was moving
around and they started reading.
Yeah, like immediately, um, andyou know they knew technically
what to do, but within 10minutes everything was moving
around and they they just notone of them ever did it and I
(26:37):
explained it all and not one ofthem ever referred other kids or
they said what, oh, wow, it'sincredible.
I said, okay, so help all theother kids that you don't have
resources to give them remedialinstruction, you get them tested
, maybe get them tested?
Speaker 1 (26:51):
Yeah, why don't they include it in some type of a?
Speaker 2 (26:53):
test.
How many of them are feelingdeficient?
How many years of failing inschool for no reason?
Wow, I don't know.
Things have got to change.
That's crazy.
That's why I wrote my book.
Yeah, thank you.
That's crazy.
That's why I wrote my book.
Yeah, thank you.
That's why I write.
You know a whole chapter aboutthat?
Yeah, just to get thatinformation out there.
If people find out, hopefullyyou know, more people will read
(27:18):
my blog and my book and then andget that information.
Speaker 1 (27:20):
That's sort of what I'm trying to get out there, so
that can help those peopleunderstand these things and look
for the solutions yeah, becauseBecause the more solution you
know, the more we get theinformation in front of, the
more people that they can shareit with people and hopefully it
can definitely make its way intoa more mainstream understanding
(27:44):
of something that would behelpful.
And yeah, understanding ofsomething that would be helpful.
And yeah, it just reallysurprises me sometimes when
these answers that people findgoing through their own
experiences, yeah, and thenthey're just like hard to
uncover, I suppose sure as aparent, just if you feel
(28:06):
something's going on, just keeplooking, just keep looking, just
keep looking.
Speaker 2 (28:10):
Don't ever let some professional says, oh, there's
nothing you can do, but don'tever accept that answer.
Parents feel their kids,understand their kids and don't
give up.
Just keep looking.
Speaker 1 (28:26):
Yeah, absolutely.
You know, don't give up, justkeep keep looking.
Yeah, absolutely, and there'sso many different providers.
How many providers for?
Is it Irlan?
Is that how you're going to?
I are aliencom.
Speaker 2 (28:39):
There are lots all over the country.
You could go on a website andthey have.
They have it's a worldwidething.
They have providers all overthe world I don't know, I don't,
I don't, I'm not aware you know, I, just I, I would fortunately
have somebody who, um, whostarted a center.
(29:00):
So yeah, but I don't knowwhat's going on anywhere else in
the world and what about yourinformation?
Speaker 1 (29:06):
do you have a website that we can send people to go
to um about?
Speaker 2 (29:10):
my website is j-a-c-k-i-s bookscom
jackiesbookscom, and there's ablog on there and information
about my book, um, a bunch ofpodcasts and things.
Hopefully, in the near futurealso, we're launching a new
thank you, a new section whichwill be called Organizing Minds
(29:36):
and that should be launchingwithin the next couple of months
with a very dear my mentor andvery dear friend who will be
giving uh, giving him, uh,giving him a section on my site
to show his work and it isincredible.
I've been waiting for him foryears to agree to do so.
(29:58):
So I hope, I, I inviteeverybody to come and check out
the site over the next fewmonths and, uh, hopefully you'll
find it interesting and helpful.
Speaker 1 (30:07):
Oh, absolutely.
I really encourage all of myviewers and listeners to go to
Jackie's bookscom J A, c, k, I,s, b, o, o K Scom.
Make sure you go and support,check out the information, share
the information.
That's one of the most helpfulthings you can do, you know, is
(30:29):
share with other communitiesthat you might be a part of,
share with groups that you mightbe a part of.
I think that's a great way ofspreading this information,
especially with social mediathese days.
Yeah, and we really appreciatethe the information, all of it
really, and the work you'redoing and the passion and
(30:51):
advocacy you have for helping,and you know a really special.
It takes a really special heartto put your passion in kind of
what you do to help communitiesworldwide.
So, thank you, thank you somuch for what you're doing.
Speaker 2 (31:13):
I appreciate it.
That's very heartwarming.
Speaker 1 (31:17):
Well, it's a.
These are answers.
Like you said, that we go toseven different doctors for that
, no one can put the piecestogether.
But, like you said, don't stoplooking, keep searching, keep.
Hopefully you find this podcastand run across it.
Ai, give us the, give theinformation to everyone that
(31:41):
needs it.
So, yeah, it was so nice to tocatch up with you today and I
really hope that you know yourmessage just keeps moving as far
as as it can and educators anddoctors, you know, take it more
seriously or just realize theimportance of having all of the
(32:05):
information out there that canhelp these families and
individuals.
Speaker 2 (32:12):
Thank you so much.
Speaker 1 (32:14):
Absolutely.
It was so nice to get you know,to catch up and I know that
it's probably in the middle ofthe night or something there for
you.
Or what time is it there?
It's pretty late.
It's not so late, it's only 830.
Okay, good, yeah, yeah, yeah,that's right.
We, when we talked, I rememberwe we tried to get it not too
late.
But I appreciate you taking thetime in an evening and
(32:36):
everything.
So it's so great to chat withyou and and I look forward to
staying in touch absolutely, andI thank you so much for the
opportunity absolutely.
Thanks so much, and let me knowif other books come out in the
future.
I certainly will.
Speaker 2 (32:51):
Okay, thank you.
Hi, thank you for joining the SG Child show today.
I am so excited to bring aspecial guest and I mean,
everybody is a wonderful special.
But Jackie and I connected awhile back and I just we both
have such passion and, um, Ijust want to hear and share her
(00:28):
stories with you.
Um, without giving too muchaway or anything, please just
introduce yourself and let usknow a little bit about you and
we'll go from there thank you somuch for having me.
Speaker 2 (00:42):
I'm excited to be here and I'm excited to see you
again and to speak with everyone.
Hopefully our conversation willbe interesting and informative.
And here we go.
So my name is Jackie Edry.
I grew up in the States and Ilive in Israel.
I've been here for many, manyyears and I am an author of the
(01:04):
book Moving Forward Reflectionson Autism, neurodiversity, brain
Surgery and Faith, and I have ablog and an educator, part-time
consultant, things like thatspeaker and I have everything to
do with neurodiversity and Ihave my oldest son is autistic
(01:25):
and I have other neurodivergentkids.
Neurodistinct actually is a termI prefer, and I myself I'm very
neurodistinct as 12 years, 12.
Yeah, just recently, 12 yearsago, I had a massive tumor
discovered on my brainstem andhad surgery, and when I woke up,
(01:47):
all of my senses were scrambledand that changed my reality.
And so I went from being aparent, caretaker and educator
working with neurodistinctindividuals to also being more
neurodistinct than I wasbeforehand, to also being more
neurodistinct than I wasbeforehand.
Wow, and after that experience,I realized I gained insights of
(02:10):
being on both sides of the coin.
I decided to write a book toshare those insights that I
gained throughout thatexperience in order to help
others, and so, in 2021, Ipublished my book and since then
, I've been looking up withpeople from around the world and
speaking whenever possible andtrying to get my message out, to
(02:32):
help improve the lives ofpeople who are looking for more
information and differentperspectives.
Speaker 1 (02:40):
And so much of that is necessary and needed.
And so much of that isnecessary and needed and to be
(03:10):
able to have it come from suchan authentic viewpoint, which I
can completely relate to, as faras being on one side of being a
parent and then getting my owndiagnosis and seeing, wow, there
is so much more here than I hadrecently realized and what a
powerful, powerful gift to beable to share with families and
educators.
Like you said, tell us a littlebit about what um and you know
some of my viewers from theinternational events.
They may know from otherspeakers, but tell us a little
(03:32):
bit about what it's like inIsrael, what the um, I guess
society's viewpoint on autismand maybe the parent support.
What does that look like?
Speaker 2 (03:47):
Well, it really depends.
Israel is a very, very diversecountry.
We have people from alldifferent walks of life and all
different religions, so there isdefinitely no one answer for
that.
It depends totally on thecommunity.
Also, in terms of, let's say,if in the jewish community, I'm
a religious orthodox woman, um,but it depends on the community
(04:09):
you're in, because each type ofthe community, or different
levels of uh, of uh keeping thefaith, uh, have different um
perspectives per se In terms ofeducation and in terms of
availability, government supportand all this.
(04:31):
We're definitely pretend we'rea very modern country, but we do
have a long, long, long, long,long, long, long way to go in
terms of availability andquality treatment, particularly
in the educational system, sothat I'd say, comparing to
(04:54):
America, there's probably we'rebehind for sure.
One thing about the Jewishreligion, though, if you are
practicing in any way ormaintain the faith, is that I
believe every soul has come downto this earth for a particular
(05:16):
reason.
So if God made you, whatever itmay be, adhd, they're distinct
in any way, shape or form or anykind of whatever, it doesn't
matter what it is, but that'sthe way you're supposed to be so
many communities having thatbeliefs, then they can be, uh,
(05:39):
more inclusive, yeah, or moreaccepting.
It really depends.
Like I said, we have been veryfortunate that that's the
attitude that people have had inour communities and in our
synagogues.
So my son, who was notparticularly verbal,
(06:00):
particularly when I was youngand he needed very high supports
, was always, always acceptedand considered as part of the
community, and now, as a youngadult, he was very much part of
the community and lovedWonderful.
Speaker 1 (06:18):
Yeah, you're so right too, and every community is so
vastly different in theirbeliefs and their support that
they can give, receive theeducation that they have.
And there's a lot of workaround the world to be done,
that's for sure.
Oh my goodness.
Speaker 2 (06:38):
We're definitely backwards in terms of inclusion.
We are way far behind.
I mean, my son was an inclusive, inclusive education, but I had
a real hard time with it andunfortunately the the one-to-one
assistance here do not receiveum.
First of all, thequalifications to be a
one-to-one assistant are not onpar with what like what, what I
(06:59):
saw in the american system, andthey do not receive the training
that they need either.
So it is very much, extremelydifficult to do inclusion here
in the educational system yeah,and I you know I would have no
idea how to go about.
Speaker 1 (07:15):
Like where, where do you go to get that change?
Speaker 2 (07:20):
like you know what kind of government programs,
agencies, agencies you know, Ijust thought all the years my
kid was in school and I Itrained and I I had a fight.
I just had a fight like crazy,but it's tiring, but I did it
anyway because I knew that wasthe where I wanted him to be and
that's where I believed hewould most benefit.
Speaker 1 (07:41):
So yeah, and it sounds like he did, if he's, you
know, in the community, lovedby the community and everything,
and that's wonderful.
No, question.
Speaker 2 (07:52):
it was good for him, but it's not for everybody.
Everybody has their own path,you know.
Speaker 1 (07:56):
Yeah, it's tricky.
That's a tricky thing forpeople that are just beginning
their journey, people that havebeen on it for a long time, to
recognize that everybody's at adifferent place and we just have
to honor that individual, thatparent that you know, therapist,
that educator, whatever,wherever they're at in in the
(08:18):
space that they're at.
Um, how did you um start?
When did you know you wanted toadvocate write the book thing?
You know, when did that startfor you?
Speaker 2 (08:34):
Well, it started the book after my surgery.
But my advocacy started many,many, many years ago when I was
in high school I volunteeredwith an autistic child and we
did a home program with a verychild-centered, lovely program
with a beautiful kid, and thatwas a long, long, long, long
(08:54):
time ago.
And then in college I alsoworked with autistic kids in
summer camps and they were alsovery natural settings doing,
even though they werepractically nonverbal.
Most of the kids I was workingwith we did stuff teen, we did
whitewater canoeing, we did allkinds of fantastic stuff with
(09:15):
them.
And then after that I tried todo my thesis about how exercise
would help reduce stimming,because I noticed that was
happening in an intensive sportenvironment that we're in in
(09:35):
summer camps.
And I got a job at a school todo my thesis a happier program
that I would be researching andit turned out that it was a
behavior modification school,which is ABA in the newest form,
but at the time it was calledbehavior modification talking in
(09:56):
the late 80s and I realizedthat it wasn't for me.
I did not believe in that wayof working with children.
It was totally opposite ofeverything I'd done.
So I wound up changing mythesis to address that issue and
educational different ways ofeducational, but a more
(10:18):
child-centered approach.
And from that I moved to Israeland then, a number of years
later, I got married and then Irealized my son.
When he was about two, Irealized that he was either deaf
or autistic.
So we did a hearing test andrealized he wasn't deaf.
And right at that point Irealized that I had to advocate,
(10:43):
because if I didn't then hewould not have the services he
needs.
So I started doing that andthen we put him in an inclusion
program.
We realized people didn't know.
It was just they just passed alaw enabling inclusion in Israel
at that time and he's 27 now.
Right, so it was quite a whileago, but it was a brand new law.
(11:05):
They weren't even doinginclusion and nobody knew what
they were doing.
So at that point I startedtraining teachers and doing
advocacy there because, in orderto ensure that he got what he
needed and and the people knewwhat they were doing, I started
working with that, with them.
So, and that went on, parentsneeded support and then,
naturally, I I started running aparent group and stuff way back
(11:27):
when, um, but after I woke upfrom my brain surgery, I
realized that I had insights,because I was no longer just the
advocate or the parent.
I realized that people don'tunderstand what it feels like to
be living with.
Let's say, I have a lot ofproblems with sensory processing
(11:49):
and a lot of hypersensitivity,particularly in the auditory
channel.
I had an unstable visual fielduntil I got earling spectral
filters, which gave me my lifeback after four years that I
practically didn't walk out thedoor because I had so many
visual disturbances.
So I realized that people don'tknow what it feels like and
(12:16):
oftentimes they are frustratedor they think a kid is lazy, not
trying enough, or why is theytantruming?
Or you know why are they havingsuch a hard time?
There's nothing that seemsannoying.
I don't know why they cry forno reason, all this kind of
stuff.
I said wait a minute, I got toexplain this, I've got to talk
about it because I know whatit's like to be on both sides.
I know what it's like toobserve that and think, well,
(12:37):
why is my kid tantruming?
I don't see anything unusual.
And then suddenly I live withthe experience and suddenly this
noise that no one's payingattention to is making me insane
.
Or somebody's perfume, orsomebody's face looks like it's
melting when I look at them,even though you know it's not
happening, but it's all in mybrain.
But it's melting when I look atthem, even though you know
there's it's not happening, butit's all in my brain, but it's
(12:58):
scary.
So, as an adult and as a personwho was not living with that
beforehand, I could alwaysreason with myself and say well,
um, you know, that's not realwhat you're imagining.
But if I had been a child andhaving those things happen to me
, I would have been terrifiedand so I would have tantrumed
and I would have fled, andpeople don't understand this.
(13:19):
So I decided I have to write abook about that experience, to
get that knowledge out, to helpimprove, like I said, improve
the lives of those who need it,and many, many parents when
their child's first diagnosedand you certainly know that I,
uh, I did so much onlineresearch and people, people are
(13:41):
looking for information, becausethe medical system just gives
you the diagnosis and they sendyou home and you go.
Well, what now?
The pamphlet?
Yeah, I didn't even get apamphlet, oh gosh.
But I knew I, I had background,but but that doesn't tell you
anything, yeah, so I wanted toget information out there, give
people practical information andtools and understanding.
(14:04):
So that's been my mission sinceand still is.
Speaker 1 (14:07):
I love that and it's so important.
You know, I me and my heredityactually we have outer ear
microtia which actually gives meum and I probably have, um you
know, sensory, a lot of sensorythings also but, yeah, it's
(14:29):
called outer ear microtia andjust basically means that
they're like smaller formed.
But for in that I have and I'vehad some testing done I have one
second longer hearing in eachear than typical people.
(14:51):
But it's also with super highpitch which hurts, and you can
appreciate.
Not many people understand thatand when I was I and I may have
told you this last time that wetalked but when I was a kid,
the in the 70s, the garbagetrucks didn't have the air
brakes, you know, or anything,and they would come into my
(15:12):
neighborhood and I would cry andI would cover my head and I
would run into my room and hide.
And it wasn't until, like maybein the last five years, that I
recognized my fear of garbageday, my fear of garbage day.
And my husband, you know, wetalked about it and he said you
(15:33):
realize that, like you're inyour forties, we don't need to
be afraid of the garbage man.
Speaker 2 (15:39):
And I really like understood wow, this has really
affected me for so, so long now,and I never, I never realized
it.
And so, yeah, now I'm, now I'mokay.
Speaker 1 (15:53):
That's amazing, though, that you've put the
pieces together now.
Yeah, oh it, it and it's all.
You know that knowledge, likeyou said, it's so important.
It's so important for theseparents to understand when your
kids covering their ears orsomething, it's not out of
rudeness or out of, you know,disrespect, or they don't want
to listen or anything.
Speaker 2 (16:13):
Um, look away they don't need to have visual
disturbances because the personthat has that doesn't know that
they have it.
They don't know there'ssomething wrong.
They think everybody's likethem, especially children.
They they that's right, sothey're not going to come and
tell their parent.
You know, this is annoying me.
They think everybody hears thesame thing and they, they don't
(16:34):
know that people don't seedouble or or the faces don't
melt, or you know, I mean that'swhat I I discovered when I took
my kids for an earlobeassessment.
They were diagnosed withseveral of them with dyslexia
and adhd, and and what turns out?
They had earlobe syndrome andand um and auditory processing.
(16:56):
Irlen syndrome is is a problembreaking down white light and
it's corrected with collegespectral fictures, if you get an
earlobe, um, but so that thethings would look like, uh,
things were moving around thepage and you know it looked like
dyslexia, um, and they couldn'tread.
(17:17):
But they they weren't.
They didn't say what they wereseeing, because, and no one
asked in a didactic assessmentpeople do not ask that as well,
which is crazy, right, but theydon't ask them.
Are the letters moving or thepage turning colors?
You know all kinds of thingslike that, um, which they do in
a neural assessment, um, andthey don't know to tell you
because they just think it'sregular.
So that's an important thingfor parents to be aware of.
(17:42):
You should ask if the child isverbal and can't communicate,
how they see things or how theyhear things, or try and
understand the sensory thing,and help, give them the words to
express, and then you can see,you know, if they tell you well,
the road goes up when I walk,or something which is actually
what happened to me, or thingslike oh, really, you know they
(18:05):
wouldn't have occurred to themto tell you that and you can get
that information and find toolsto help them.
Speaker 1 (18:13):
Thank you so much.
That's just so valuable becauseI even my own kids I don't know
if I've ever asked them thatsame thing so that's great.
I love curiosity.
I love to want to know more,especially about you, know
experiences and things, so Ireally appreciate that.
Let's go back to before you hadthe tumor.
(18:36):
What prompted you to go get itchecked out?
What was the signs for you thatyou needed to go get it looked
at?
Speaker 2 (18:49):
I was feeling exhausted all the time.
I was just feeling like a carcar, like the gas was running
out, starting to like putter.
I was very, very tired and Iwas getting, um, a stiff neck.
I just I just felt likesomething was wrong and I got
(19:10):
went to the doctor over and overagain and they couldn't find
anything.
My blood work was perfect, uh,and all this other stuff, but
they weren't finding anything.
And then I started doing some ofmy hearing, and that was
probably what saved my life isthat my hearing on my left side
was becoming, um, it was innormal range, but I didn't
(19:33):
understand what people weresaying to me.
It sounded like people weretalking to me through a wad of
cotton or something, orunderwater.
Uh, one moment one and I wasunderwater, sorry, and and I
couldn't.
I just couldn't understand.
And it just kept getting worse,although my testing was hearing
(19:55):
is in normal range, like it's adeveloped, very severe auditory
processing disorder in my leftear only, and so, after about a
year of complaining that it wasgetting worse and worse and
worse, uh, my ENT sent me for anMRI and discovered a whopping
tumor on my brainstem.
Uh, that had probably been therefor 10-15 years.
Wow, it was huge, I mean, for abrainstem.
(20:19):
It is a very, very small partof the brain and I had a five
centimeter round tumor on it andall my nerves were involved in.
It was just one half a second,please.
Yeah, you're absolutely fine.
It was just one half second,please, sorry.
(20:41):
Yeah you're absolutely fine,nice, right.
Yeah, so, and my nerves wereinvolved.
It was very um powering.
So within within like a coupleweeks after receiving the
results, the MRI was already onthe operating table.
(21:02):
Yeah, I'm lucky.
I'm lucky that I couldn't hearmy left ear, because otherwise
it probably wouldn't be here.
Speaker 1 (21:09):
Oh, my goodness.
Speaker 2 (21:10):
Yeah definitely.
Speaker 1 (21:12):
And then you woke up and what was it?
You realized and recognizedfirst what was off.
If you could say or I don'tknow, I guess now that the tumor
is removed, my doctor told me.
Speaker 2 (21:29):
my surgeon said I was going to feel that way and he
was not exaggerating.
It was that painful everything.
And because they tinker in yourbrain, then my, my brain,
fortunately my cognition was notaffected, but everything else
was, and I.
I had a really long surgery too.
It was like 11 hours, I think,or 12 hours.
(21:51):
And then I slept, I think, foranother 24 or so.
Fortunately, when I woke up Iwas no longer intubated.
I started breathing on my ownand they took out the tube
because that wouldn't have beenfun.
But everything was off.
I just, my body wasdisorganized.
(22:11):
I didn't know how to.
I had to relearn how to walkand probably talk, and didn't
realize.
Very quickly, and in the ICU Irealized I was having problems
swallowing.
They told me I might.
Very quickly In the ICU Irealized I was having problems
swallowing.
They told me I might.
I do have damage on one of mynerves On my left side.
(22:34):
I can't swallow properly, Idon't.
At the time I didn't realizethat I really had problems.
I couldn't swallow, that.
I realized very quickly that Iwas having problems.
I couldn't eat or do you know.
So that I realized very quicklythat I was having problems.
You know I couldn't eat or doanything like a normal person,
or walk.
(22:55):
But then I realized prettyquickly that something just
seemed really off.
I didn't know how to explain it.
When they would push me in awheelchair I would just get so
dizzy and it didn't seem like avestibular thing.
I know I do have the damagedvestibular nerve on that side,
but it was just something off.
I would get dizzy andeverything just looked weird.
(23:17):
And that was already like whileI was still in the hospital.
And that was what turned outthat, as a result of surgery, I
had severe problems.
Light in the hospital, um, Ididn't know, it was lights at
the time.
It took me a really long timeto figure out that that was the
deal, yeah, but everything wasblurry and I lost my, my depth
(23:39):
perception, which is very weird,because I knew things were
farther away from me, let's say,but I couldn't judge how far
anything was, because every Igot 2d vision right, yeah, um,
and then staircases would spinaround and all kinds of things
like that, uh, and and thelights would dance across the
ceiling and the, the lines andthe tiles between tiles on the
(24:03):
floor become parallel lines andand the streets would go up
things.
Um, it's just all visualdisturbances, uh.
And then I realized the hospitaland it didn't go away for four
years.
I went to opt ophthalmologist,I went to neurologist, I went to
neuro-ophthalmologist.
Nobody knew or could put afinger on it.
(24:23):
They were not.
I don't know what they thoughtI was imagining.
And then I got a colored lens.
I went to an earlend provider,irlencom.
She put a finger on it.
They were not I don't know whatthey thought I was imagining.
And then I got a colored lens.
I went to an airline provider,irlencom she put a colored lens
in front of my eye and all ofthat went away immediately.
Wow, and not one person, notone professional.
And I was hunting, I couldn'tfor four years.
(24:43):
I could barely walk out thedoor, you know, and I couldn't
even ride in a car because Iwould get nauseous, I would get
vertigo and color color.
That's it, a custom coloredlens.
And it went away.
And I would think that you know, telling professionals these
things, everybody would just run, run.
(25:10):
Whether they saw a person had afirst or second grader having,
uh, reading issues, or somebodylike me, um, they would first
immediately tell them to geturine tested and they don't even
, because it's not mechanical,they don't try and refer, even
refer people, they don't eventry to learn more about it, they
just poo-poo it.
Yeah, yeah, absolutely.
I've been to so many educatorsand so many doctors and so many
(25:31):
professionals and they do notwork.
Sorry, shh, sorry, someonewalked in the door.
You're good Noisy doggies.
Speaker 1 (25:43):
No, that that must be so frustrating and I I just
can't.
It's so hard that there's notsome sort of like everybody
could well now AI hopefully willwill help us figure those
things out a little bit quicker,but you know that there's not
somewhere doctors can have thisinformation to share with you
(26:12):
and then school principals theysaw in my case, once they they
got diagnosed and they werehaving one was 11th grade and
had serious problems reading.
Speaker 2 (26:17):
Fifth grade could not read.
They had years of remedialinstruction that didn't work.
And then they got them coloredlenses and they started reading.
Yeah, like immediately, um, andyou know they knew technically
what to do, but within 10minutes everything was moving
around and they started reading.
Yeah, like immediately, um, andyou know they knew technically
what to do, but within 10minutes everything was moving
around and they they just notone of them ever did it and I
(26:37):
explained it all and not one ofthem ever referred other kids or
they said what, oh, wow, it'sincredible.
I said, okay, so help all theother kids that you don't have
resources to give them remedialinstruction, you get them tested
, maybe get them tested?
Speaker 1 (26:51):
Yeah, why don't they include it in some type of a?
Speaker 2 (26:53):
test.
How many of them are feelingdeficient?
How many years of failing inschool for no reason?
Wow, I don't know.
Things have got to change.
That's crazy.
That's why I wrote my book.
Yeah, thank you.
That's crazy.
That's why I wrote my book.
Yeah, thank you.
That's why I write.
You know a whole chapter aboutthat?
Yeah, just to get thatinformation out there.
If people find out, hopefullyyou know, more people will read
(27:18):
my blog and my book and then andget that information.
Speaker 1 (27:20):
That's sort of what I'm trying to get out there, so
that can help those peopleunderstand these things and look
for the solutions yeah, becauseBecause the more solution you
know, the more we get theinformation in front of, the
more people that they can shareit with people and hopefully it
can definitely make its way intoa more mainstream understanding
(27:44):
of something that would behelpful.
And yeah, understanding ofsomething that would be helpful.
And yeah, it just reallysurprises me sometimes when
these answers that people findgoing through their own
experiences, yeah, and thenthey're just like hard to
uncover, I suppose sure as aparent, just if you feel
(28:06):
something's going on, just keeplooking, just keep looking, just
keep looking.
Speaker 2 (28:10):
Don't ever let some professional says, oh, there's
nothing you can do, but don'tever accept that answer.
Parents feel their kids,understand their kids and don't
give up.
Just keep looking.
Speaker 1 (28:26):
Yeah, absolutely.
You know, don't give up, justkeep keep looking.
Yeah, absolutely, and there'sso many different providers.
How many providers for?
Is it Irlan?
Is that how you're going to?
I are aliencom.
Speaker 2 (28:39):
There are lots all over the country.
You could go on a website andthey have.
They have it's a worldwidething.
They have providers all overthe world I don't know, I don't,
I don't, I'm not aware you know, I, just I, I would fortunately
have somebody who, um, whostarted a center.
(29:00):
So yeah, but I don't knowwhat's going on anywhere else in
the world and what about yourinformation?
Speaker 1 (29:06):
do you have a website that we can send people to go
to um about?
Speaker 2 (29:10):
my website is j-a-c-k-i-s bookscom
jackiesbookscom, and there's ablog on there and information
about my book, um, a bunch ofpodcasts and things.
Hopefully, in the near futurealso, we're launching a new
thank you, a new section whichwill be called Organizing Minds
(29:36):
and that should be launchingwithin the next couple of months
with a very dear my mentor andvery dear friend who will be
giving uh, giving him, uh,giving him a section on my site
to show his work and it isincredible.
I've been waiting for him foryears to agree to do so.
(29:58):
So I hope, I, I inviteeverybody to come and check out
the site over the next fewmonths and, uh, hopefully you'll
find it interesting and helpful.
Speaker 1 (30:07):
Oh, absolutely.
I really encourage all of myviewers and listeners to go to
Jackie's bookscom J A, c, k, I,s, b, o, o K Scom.
Make sure you go and support,check out the information, share
the information.
That's one of the most helpfulthings you can do, you know, is
(30:29):
share with other communitiesthat you might be a part of,
share with groups that you mightbe a part of.
I think that's a great way ofspreading this information,
especially with social mediathese days.
Yeah, and we really appreciatethe the information, all of it
really, and the work you'redoing and the passion and
(30:51):
advocacy you have for helping,and you know a really special.
It takes a really special heartto put your passion in kind of
what you do to help communitiesworldwide.
So, thank you, thank you somuch for what you're doing.
Speaker 2 (31:13):
I appreciate it.
That's very heartwarming.
Speaker 1 (31:17):
Well, it's a.
These are answers.
Like you said, that we go toseven different doctors for that
, no one can put the piecestogether.
But, like you said, don't stoplooking, keep searching, keep.
Hopefully you find this podcastand run across it.
Ai, give us the, give theinformation to everyone that
(31:41):
needs it.
So, yeah, it was so nice to tocatch up with you today and I
really hope that you know yourmessage just keeps moving as far
as as it can and educators anddoctors, you know, take it more
seriously or just realize theimportance of having all of the
(32:05):
information out there that canhelp these families and
individuals.
Speaker 2 (32:12):
Thank you so much.
Speaker 1 (32:14):
Absolutely.
It was so nice to get you know,to catch up and I know that
it's probably in the middle ofthe night or something there for
you.
Or what time is it there?
It's pretty late.
It's not so late, it's only 830.
Okay, good, yeah, yeah, yeah,that's right.
We, when we talked, I rememberwe we tried to get it not too
late.
But I appreciate you taking thetime in an evening and
(32:36):
everything.
So it's so great to chat withyou and and I look forward to
staying in touch absolutely, andI thank you so much for the
opportunity absolutely.
Thanks so much, and let me knowif other books come out in the
future.
I certainly will.
Speaker 2 (32:51):
Okay, thank you.
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