Hello and welcome to another episode of Rad Mom Radio!
This week my guest is Anastascia, a local wife, mom, and college counselor. Anastascia has two sons, her youngest, Caleb, is a senior in high school and is diagnosed with Angelman Syndrome. In this episode we talked all about Angelman Syndrome, Anastascia's experience as Caleb's parent advocate in the school system, and what an inclusive classroom should be.
Thank you so much for listening!
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Natalie (00:00):
Hello and welcome to rad mom radio a podcast
dedicated to moms and all theirfavorite topics My name is
natalie and i'm your host Helloand welcome back to rad mom
(00:24):
radio, thank you for joining mefor another episode I hope that
you're having a great week sofar.
It's almost the end of summer.
I think our last 100 degree dayhere in Fresno is Thursday.
Fingers crossed.
Super exciting.
So that means it's fall.
I mean, sorry.
Sorry, not sorry.
(00:45):
It's fall.
I haven't had my first pumpkinspice latte yet.
I know a lot of you have.
I don't know what I'm waitingfor exactly, but I'm still
excited, you know, thateveryone's enjoying them, so.
I have a great episode to sharewith you this week.
I got to interview a local momnamed Stacy.
(01:06):
Stacey has two sons.
One is college age and one is asenior in high school.
Her youngest, Caleb, is a seniorin high school this year.
And Caleb is diagnosed withAngelman Syndrome.
So you'll get to hear all aboutthat and what Angelman Syndrome
is, what it looks like, how itimpacts a person.
(01:28):
And Stacey is very knowledgeableand experienced in advocacy,
like school based advocacy, sowe talked a lot about that.
We talked a lot about Stacey'sexperience in advocating for
Caleb in the school system, justwhat that's been like for her as
a mom.
Different challenges she hascome across.
(01:49):
We also talked about kind of,you know, her beliefs about what
a classroom should look like,how it should support its
students with special needs.
So this was a really goodinformative episode.
I really enjoyed my conversationwith Stacy.
So thank you so much for joiningme this week.
Big thank you to Stacey for yourtime and just for coming on and
(02:10):
chatting with me.
This is my interview withStacey.
Hi Stacey.
Welcome to Rad Mom Radio.
Hi Natalie.
Nice to have you here with metoday.
(02:32):
Thank you for inviting me.
Yeah, definitely.
You know, we haven't reallygotten a chance to get to know
each other, but I do know thatyou're a local mom with, you
know, a lot of experience inadvocacy in the school system,
and you have a child withdisabilities.
So, I really, you know, wasinterested in having you come on
(02:53):
to chat.
Before we get started with,like, what we're gonna talk
about today, I have a thing foricebreaker questions.
I love, like, knowing littlerandom things about people.
And I was just kind of lookingat your Facebook, and there's,
you know, I like to...
To come up with questions thatare specific to the person.
(03:13):
And there were a few things thatreally stood out to me about
what you post online.
One of those is just the men inyour life.
So you have two sons, right?
Yes.
Okay.
Yes, I do.
And then your husband.
And so I was just, it just lookslike you guys are like super
close and tight knit.
(03:34):
It looks like your sons are veryclose.
And I just really, I thoughtthat was really sweet.
I think there was some kind oflike montage you had of your
sons together, like in picturesover the years.
And it was super cute.
So yeah.
So what I wanted to ask you waslike, what is something that is
(03:54):
remarkable or special to youabout each of the men in your
life?
Okay.
So, I mean, I did have thequestions ahead of time.
So I really was thinking aboutthis.
And this is going to be an oddanswer, but reality is they all
make me laugh.
So they, it is interesting howthey each have this sense of
(04:17):
humor.
And I think with our lives, itis so important to be able to
laugh.
And yes, people who know myson's nonverbal and are
listening to the beginning ofthis.
Are going to wonder how doesthat happen?
But Caleb's facial expressionsare just out of control
sometimes.
Driving with him, if I'm likedriving faster or I hit my
(04:40):
brake, I mean I get that lookfrom him.
You know, basically, Mom, whatthe F are you doing?
Like, you know, and then he'swatching me drive because he's
not sure what's going on.
So that's how I, I can see hishumor in that.
And just through his facialexpressions.
Both my husband and my olderson, Ryan, are just constantly,
(05:00):
it is like non stop.
We are constantly laughing inour house.
And I think I'm the brunt of alot of their, their jokes and
stuff because I'm the only girlin the house.
But, that's, I think that is theremarkable thing about the three
of them.
They just always, I'm alwayslaughing.
My son was just, my older onewas just here visiting.
And I mean, I think I laughedthe entire week he was here.
(05:23):
It was so funny.
So that is, that is, yeah.
It makes life a lot easier too.
Yeah.
Laughter is huge.
Being able to laugh and all thatstuff.
Yeah.
Definitely.
The other thing that reallystood out, it's gonna sound so
silly, that stood out to meabout your, your page is
(05:44):
charcuterie boards.
And I, and I have a fascinationwith char, not a fascination, I
just really appreciatecharcuterie.
So I was thinking about like,and I don't even know what
context this comes up in yourlife.
If you make them, or you hostparties, I don't even know, but
I saw them and I was like I'mgonna ask about it.
Yeah.
So, like, if you could buildyour dream charcuterie board,
(06:06):
what would be on it?
Well, I mean, my dream board isan interesting question.
I'll give you a littlebackground.
So growing up, there was no namefor charcuterie board.
We didn't have that term, butwe...
Would have people come over andvisit and my nana and my mom
would always cut up meats andcheeses and we'd have breads and
(06:28):
olives and I was just raisedthat way and then a few years
ago all of a sudden everybodystarted using this term
tricotery board and I was allwait a minute.
I've been doing that forever.
Yeah, so That's how that is.
So some of most of them I postare ones that I make for parties
and stuff, but dream board, Imean I don't know.
(06:50):
A dream board for me basicallywould be cheeses and vodka and
like lemonade or vodka andorange juice on the side.
And I just think food bringspeople together.
So it's just nice to, I couldthrow one of those out and serve
them, but I'm a big cheeseeater, breads, crackers, as a
matter of fact, we, I make alittle mini charcuterie boards
(07:11):
every weekend.
That's our, like our luncheither Saturday or Sunday with
some fruit and some other thingson it.
So.
Yeah, it's just been, I don'tknow, it's kind of fun now
because everybody knows whatthey are.
Yeah, I didn't even think aboutthe fact that it may not have
really had like a, a term prior.
I, I mean, I, I was watching areality show a few years ago and
(07:33):
they went to a restaurant and Iwas like, what are they
ordering?
So I had to look it up and I waslike, Oh Lord, I know what that
is.
Yeah.
Yeah.
Oh, when you heard charcuterie,you're like, what the heck is
that?
Yeah.
I was like, what is that?
Cause we never use those terms,but yeah.
Yeah.
Growing up, we always had likecheese and salami and pepperoni
and olives and nuts and you nameit bread, but not normally
(07:57):
crackers growing up.
We always had a bread that weserved with it, but yeah.
Yeah.
So it's, it's just kind of fun.
and drinks bring people togetherand you can sit and laugh.
There we go with the laughteragain.
Have a good time.
Yeah.
Yeah.
So kind of like what, what Iwanted to, you know, talk to you
(08:17):
about.
Today was, you know, kind ofstarts with Caleb and.
You know, his disabilities andthen kind of how that has, I
guess, created in you, you know,the need to be an advocate, you
know, because we are our kidsbiggest advocates and it's a
huge learning curve, you know,learning how to be an advocate
(08:38):
for your child.
And, and I think that youradvocacy experience is, is
different than what I feel likeI normally come across.
So definitely want to ask you,you know, about that and what
that's been like for you.
But before that, I did want toknow, like, what's your, like,
your career background?
Could you tell us about, like,your career and your family?
(09:00):
Yes, definitely.
I'm actually a collegecounselor.
I am very lucky and fortunate towork part time.
Decision that, you know, myhusband and I came a few years
ago, decided it was best for mebecause I can also do advocacy
work with my part timecounseling schedule.
I have a master's in counseling,went to Fresno State.
(09:21):
I've predominantly worked myadult life in some type of
education form.
You know, going to college, Iwas a para educator for Fresno
Unified, so that was way beforeCaleb.
So that gives me, you know, Ihave that kind of perspective.
I worked as a career counselorout in Mendota Unified for a few
(09:41):
years, and I did some substituteteaching, which was really eye
opening.
And then I got hired on at thecollege and I've been there
about 16, maybe 17 years.
And then the last 12 years as apart time counselor.
So that's my, my career.
And I love, if you read my post,you'll know, I love my job.
I love my students.
(10:03):
And I, I, you know, get aperspective on working with
disabled students at the collegelevel.
Cause it's very, very differentthan the K through 12 system.
And kind of, like, leading into,like, Caleb, you know, can you
tell us more about Caleb andwhat his diagnosis is, or does
(10:24):
he have more than one diagnosis?
Yeah, I, Caleb is 16, and he wasdiagnosed with Angelman Syndrome
when he was 18 months old.
And it, with, he doesn't haveanother diagnosis.
But there is a lot that comeswith Angelman Syndrome, so Caleb
does have seizures, they'recontrolled with medication, but
(10:46):
seizures are very common amongstpeople with Angelman Syndrome.
He is nonverbal, he has ataxiaI'm trying to think of what
else.
I'm drawing a blank on it.
But that's, that's pretty muchCaleb in a nutshell, is that he
has Angelman syndrome.
(11:06):
It's not common.
It's like one in 15, 000.
Okay.
So it's pretty rare.
Although it's like buying a newcar.
When he gets diagnosed, youstart seeing other, you're out
and about, and you'll see peoplewith Angelman syndrome.
But in the Valley, and not thatI know everybody that has
Angelman syndrome, there's maybea handful of people that have
what we call AS.
(11:27):
I mean, just over the years anddoctors who've reached out about
certain patients, I would saymaybe 20 to 30, if that like
it's pretty, yeah.
And Sanger and our, I mean,there might've been one other
person and he's older that wentthrough the district that has
Angelman syndrome.
So it's pretty like not common,maybe misdiagnosed and possibly
(11:51):
could be misdiagnosed for autismor cerebral palsy.
And I think that.
It's happened a lot.
I know the Angelman SyndromeFoundation has worked hard to
get the stuff out about, I'mtrying to think of how they, you
know, to doctors and hospitalslike looking at maybe this is a
possibility for a diagnosis orwhatever.
(12:12):
How would you describe tosomeone what Angelman Syndrome
is?
Well, it's a deletion ofchromosome 15.
And so, I mean, really, he's,he's missing a part of his
chromosome, the maternal part,if I'm correct, on the
chromosome.
Caleb has the most common formof Angelman syndrome, which is
the deletion, and of that wewere doing a study when he was
(12:33):
younger down in San Diego, justa natural history study, because
Angelman became a diagnosis inthe late 80s, early 1990s, so
it's fairly, fairly newdiagnosis.
And it was Dr.
Harry Angelman, that's how thename became Angelman, not
because they're angels, becausethat was the doctor's name who
discovered the gene and realizedthere were similar
(12:54):
characteristics as far as likelaughter, kind of their jawline.
Just a happy demeanor theataxia, the wide gait and stuff
and not all people with Angelmansyndrome walk.
Some of them are in wheelchairsand don't have the ability to
walk.
Caleb was tested to see the sizeof his deletion and it was years
(13:16):
ago, but if I remembercorrectly, he was the bigger
deletion.
And I remember the doctor in SanDiego saying that she was so
surprised.
Because they typically see thekids with a bigger deletion who
don't walk, who have moreseizures and just struggle a
little bit more.
And then she proceeded to tellme that's why we do this study
because we want to see acrossthe board what it looks like.
(13:38):
Is it the kind of thing that,that a doctor could see when,
when a baby is born?
Or is it something that developsover time and then you would,
you know, approach anevaluation?
It's not anything you could see.
I Caleb's pictures.
Right.
So, I mean, I mean, if he's notcommunicating the way he
(14:02):
communicates, one of the ways hecommunicates, you probably
wouldn't even know he had adisability if he's just sitting
there.
So, it is something that whenthey're not reaching milestones
that's when you start looking atwhat's going on.
And that's exactly what it wasfor us.
In about five months, six monthsI noticed Caleb really wasn't
doing anything.
(14:23):
So, he would just...
He was just laying there.
He wasn't rolling.
He wasn't moving.
He barely moved his head.
I said, something's not right,like, but my older son was
delayed too.
He did a lot of things likelate, my older son didn't walk
till he was 18 months.
So I'm like, I don't know, likemaybe, and I asked the
pediatrician, I remember askinghim and, and he just kind of
(14:45):
blew me off, which I think is atypical experience for a lot of
us.
And so I let a couple of monthsgo by and.
I was like, you know what?
I need to get him into theCharlie Mitchell clinic, which
is our clinic up at thechildren's hospital.
And we were able to talk to afriend who got us into the
clinic.
And even that doctor, who isstill Caleb's doctor, he has,
(15:07):
he's actually still Caleb'sdoctor.
But even he said, oh, don'tworry about it, mom.
Kids sometimes don't do anythinguntil they're a year old.
Well, when he was a year old andhe still wasn't rolling, I said,
okay, something's going on here.
Yeah.
And then we started the earlyintervention process and none of
them mentioned anything to me.
(15:27):
And the doctor said, okay, well,let's look at, you know, OT, PT,
never brought up speech.
Speech was something that camedown the road.
And in this process, my husbandattended a conference and the
man presenting.
Dr.
Modell is his name, was the headof the autism center at Sac
State at the time.
So afterwards, my husbandapproached him and said, Hey,
our son's really delayed, likewe don't know what's going on.
(15:50):
And so I reached out to him,he's like, have your wife reach
out to me.
He calls me one day, we'retalking on the phone and he's
asked me, can you send somepictures?
of your son.
And this was old school, right?
So I had to go home, get on thecomputer and email.
It wasn't like I was on thephone and could send it to him.
And so immediately he emails meback and says, I am not a
(16:12):
medical doctor, but I he hascharacteristics of Angelman
syndrome.
And then I call him and I said,how do you know that?
He said, well, when I did mydissertation, I worked with two
clients who had Angelmansyndrome and he did his
dissertation on Angelmansyndrome.
And I was like, okay, so then westarted bugging the doctor, the
(16:35):
pediatrician, to get us into thegenetic doctor.
And that took a while.
And I remember leaving him amessage, the pediatrician, the
pediatrician called me back andleaving me a message.
He said it wrong too.
He said, your mom, he said, mom,he always says that, mom, your
son does not have Engelmansyndrome.
And he said, but I will referyou.
So We went into again Children'sHospital with Dr.
(16:58):
Shin.
Dr.
Shin and I still stay in touch.
He's moved on out of the Fresnoarea.
We sit down, he's looking at ourson and he's looking at him and
we, we did not tell him priorwhat we thought, what we had
heard.
We wanted to see what hethought.
And 45 minutes into theappointment, he said, well, mom,
I have some thoughts, butthere's some things that he
doesn't have thecharacteristics.
(17:19):
And I finally was like, spit itout.
Spit it out.
And then he said, I, I believehe has something called Angelman
syndrome.
And at that point, my husbandand I knew, and we both broke
down and the reality of howdifferent our life was going to
be hit us and then he asked us,have you heard of it?
And we went into the whole spielof how we heard, heard about it.
(17:41):
And he said, I'm not a hundredpercent.
Let's do the blood work.
And then less than two weekslater, the blood work came back
and he, he was positive forAngelman syndrome.
I had to ask the genetic doctortoo.
Like, how did you know?
Well, he worked on us Angelmanstudy in Texas.
And so he worked several yearswith children who had Angelman
syndrome.
So he, like I said about buyingthe car, you know, he knew some
(18:03):
of the characteristics andthat's.
How our journey really began at18 months old and our world
changed tremendously changedforever.
Yeah.
And then we just started pushingforward and learning and growing
and all of it.
What, what is Caleb's like?
What is his experience beenlike?
(18:24):
Has he always been in like themainstream, not mainstream
school, but like, has he alwaysgone to like a public school or
have you guys had him at home?
What's that been like?
Okay.
So I, you know, I didn't know alot in the beginning as most
parents don't in California andI suspect, I think it's that way
across the U S school districtsstart.
(18:46):
At three years old, providingservices all the way through 22.
Well, 21, 364 days old is whatthe districts do.
And so I, I didn't have any clueor understanding of what that
was going to look like for us.
I did realize at some point itwas not going to be easy having
(19:06):
Caleb go to a, you know, atypical daycare or a typical
preschool that there were goingto be challenges.
I was very, again, veryfortunate that we were, I was
able to attend Angelman SyndromeFoundation conferences, so I'm
learning from other parents andI, at the time, was working full
time, and so I was like, okay,he's gonna have to go into the
(19:29):
preschool system and not, Ithink most of California's
districts are like this, theyhave, they have a SELPA Fresno
Unified has their own, Clovishas their own, Sanger's part of
the Fresno County SELPA, Thecounty students have been a
negative connotation since Iworked in Fresno Unified 30
(19:49):
years ago.
It still is today.
The county doesn't work withdistricts.
That's a huge problem.
I mean, I could spend two hoursjust talking about that and how
we're not working together andthey're those students.
The county students.
If you're on, if you go to anynumber of our high schools,
Madera our school, yeah, ourschool Central Unified made some
(20:11):
changes with the countystudents.
Their classrooms are always inthe back.
They're always away and they'resegregated from the rest of the
school.
It's very common for the countystudents to be that way.
But the number one thing I wantto get across to people is my
son and those in his classroomare Sanger Unified students.
The county provides a service.
(20:33):
They are not Fresno Countystudents.
They are Sanger Unifiedstudents.
The county provides a service.
Our district pays the county toprovide the special education
services to our children.
But it has caused mainstreamingand inclusion.
It's put such a divide.
That it's, it's almostimpossible to get out of it.
(20:55):
When I was doing my internshiphours for grad school I got to
do the last two weeks in MontaVista which is a very
segregated, School in EasternFresno County.
But through that I was able togo out to one of the schools in
another local district, not inSanger.
I went in asking for the teacherof the county program.
(21:16):
They had no idea who I wastalking about.
I'm like, this teacher and thesestudents are on your campus.
So I did that for a few daysbecause I was kind of testing it
out.
But even after my two weeksthere, they, they had no clue.
The front staff in theelementary school.
So it is that's something thatneeds fixed.
Yeah.
Yeah.
There's a lot that needs fixed,but that's one of them.
Yeah.
(21:37):
So Caleb started in, I didn'tknow I, like I said, I didn't
know, I didn't understand thesystem at the time.
And so we right away, we werepresented with all the options
in Sanger Unified schooldistricts are notorious for
doing that.
They are very notorious forsaying, okay, you have this, and
this is, you're only twooptions.
(21:59):
Sign this paper, sign thatpaper, not necessarily, throwing
stuff in there that parents areso overwhelmed and, And if you
do have a child with adisability and you're listening
to this, you know, in thebeginning, it is so overwhelming
to come to terms and theunderstanding of raising a child
with a disability.
All of a sudden, this child whoyou thought was going to go to
freaking USC and play footballis now going to have to be cared
(22:25):
for for the rest of his life orher life.
And so district's pride.
play on that districts.
They use that to theiradvantage.
They swoop in with parents andthey overwhelm them with
paperwork.
And we're not researchingthings.
And a lot of times, especiallyin California, we have both
parents work and they're tryingto provide for their child.
(22:46):
They're trying to deal with thisdiagnosis.
They're trying to do this andthat.
And then districts come in.
And they're like, okay, nextthing you know, you're in a
county program.
The biggest, biggest mistake,and my husband will agree with
me, that we ever did was agreeto allow Caleb to be in the
county program.
We were never able to get himout of the Fresno County
program.
And it's not that we've had somegood teachers, not all.
(23:08):
We've had some good teachers,we've had some good parents
through the county, but it'sbecause of that negative
connotation that comes withbeing a county student.
And the fact that there aren'tmainstreaming and inclusion
opportunities, there's noinclusion opportunities at all,
but those aren't available.
People look at our, the countystudents.
Like they're nothing and that'sa huge problem that we have not
(23:28):
only in our district, but acrossthe board in California.
So that's how kind of our storystarted.
We ended up with the County.
I mean, I knew things from sometraining, not to sign IEPs to go
in.
If you're, you know, go in withan advocate or somebody else,
which we did Caleb's first IEPmeeting.
So imagine this, if you haven'tbeen through one first IEP
(23:51):
meeting, we walk in.
And there's 15 people from thedistrict and the county there.
I had known that was going tohappen because I had parents
tell me ahead of time.
And we took an advocate with us.
So anytime you take an advocate,it changes the whole dynamic of
the meeting.
And I have learned and grown somuch from that first meeting.
But yeah, I would have foughtfor an inclusive education that
(24:15):
he would have been in his homeschool.
Caleb attended one, two, threeelementary schools.
So I would have definitely, Iwould have definitely fought for
him to be fully included at hiselementary school where his
brother attended elementaryschool with the right support.
If everything I know now, Icould go back.
That is the number one thing Iwould do.
(24:36):
It's just so important.
I can't stress that enough tohave our kids educated together.
I just spoke with a mom theother day and I said, because I
have these same worries.
As most parents do, Oh, we'regoing to put my kid who's
disabled into a classroom withgeneral ed kids.
Like, how's that going to look?
Are they going to be disruptive?
(24:57):
Are the other kids going tolearn?
And that was me.
I'm not going to lie.
That was me.
I no longer believe thosethings, but that was me.
And what I've learned over theyears, one of the biggest things
I learned is when Caleb finishesthe school system next year,
when he actually graduates thehigh school, because then he'll
go into the adult transition.
We're just throwing them to thewolves because guess what?
He's going to live in thiscommunity.
(25:18):
With all those same people hewas segregated from all those
years ago.
And that they've separated him.
And I think that that's, that'sthe number one thing is they
will live and work in acommunity together long after
the high school years and themiddle school and elementary
years.
When you're saying Countyprogram, do you mean like an SDC
(25:41):
or like a special day?
Class.
Yes, yes.
So under the SELPA, and if youlook at it where school
districts didn't maybe haveenough funding to run all the
special education programs,which I've learned over the
years is a big load of prep too,because they do get, when I
listened to your podcastearlier, They do get actually
(26:05):
more average daily attendancefor students with disabilities
than, than the gen population.
So they're, the money's there.
And Sanger is such a bigdistrict now that they should be
their own cell phone like Clovisand Fresno.
But that's what smallerdistricts, you know, Parlier
Mendota because they don'tnecessarily have the means or
the whatever, then that's whenthey bring the county program
(26:27):
into work in the SDC class.
The special day class is whatthey do.
They don't do the resource.
As far as I know, they don'thave the RSP programs through
the county.
Those are run through districts.
But in our SELPA, it would belike Kings Canyon Unified,
Sanger Unified, Parlier Unified,Mendota, all those like outlying
(26:49):
schools.
In Fresno County, you know,whoever else is in, I don't know
who else is in Fresno, but yeah.
So if you could go back, youwould have pushed for Caleb to
be in an inclusion program fromthe beginning, we would've
developed an inclusion program.
Mm-hmm.
Mm-hmm.
we, we would've had to havedeveloped it.
(27:10):
Mm-hmm.
Yeah.
It's not anything that any ofthe districts in this area.
Fresno to Larry Kings County.
Nobody practices that.
You obviously have friends inall those areas.
So we would have developed aprogram for him and we would
have fought the district.
We would have held off onputting him into school at
three, but I didn't know that Ididn't know any of that was an
option.
I didn't, like I said, I, I wasunder them in my, my opinion at
(27:32):
that time was like, Oh, I don'twant to distract the other kids.
But I've since changed myopinion and I can't go back.
I can only go forward and I canhelp other.
Parents along the way and talkto them about the inclusive
education.
Yeah.
Well, it's definitely notpresented as an option.
(27:54):
You know, I remember when myson, he was, he was evaluated
through Fresno Unified, sothat's where he started.
And so I remember his first IEPwasn't like, well, we could do
this.
So we could do this.
Is this kind of like, this iswhat.
He would do and so you're like,okay, and you're right.
Like in the beginning, it's veryoverwhelming.
(28:14):
You don't know what the hellyou're doing.
And so when someone's lays out aplan for you, it's like, thank
god someone has some kind ofidea of what we're supposed to
be doing so Yeah, and and Idon't know like how often do we
really see that where we see achild with a disability in a
classroom with with gen ed kids,you know, right?
(28:38):
We rarely see it I mean, it israre there are the, the hidden
disabilities, maybe, you know,the dyslexia deaf students, you
know, yes.
You're going to see that.
Are you going to see my son whohas significant disabilities?
I'm not going to sugarcoat that.
I mean, he does in a classroomwhile you are, because he is
(29:02):
45%, 48% mainstreamed.
He is, and I have that one ofyour questions.
I wrote that down.
I was like, Oh, I want to makesure I talk about this stuff
with him.
And it was years of, ofadvocating and fighting the
district to go ahead and getthe, the okay on some of the
stuff that we do with them, butno, we don't see students like
(29:25):
that, but I've been lucky enoughto present.
I presented Fresno state almostevery semester.
I've presented for Caleb whenone of his elementary schools
and then seventh and eighthgrade, I was able to go in and
talk with the, his classes then.
And the one thing I always sayis, especially with the young,
younger kids, one of youundeniably, one of you will have
(29:48):
a child with a disability likeCaleb.
It's just the way life is.
And that's, what's going tohappen.
And Caleb, you know, I used tobelieve, Oh, it's so good for
Caleb, which it is.
Jeanette is good for him, butthe flip side of it is.
We're we're raising and if we'repracticing inclusive education,
we are raising compassionatestudents and students who take a
(30:11):
look at Caleb and say, wait aminute, we're all different, you
know, and that's okay, it's okayto be different.
It's way easier to do inclusiveeducation in elementary school.
It's more difficult in middleschool and high school.
And, you know, we all knowteenage hormones and all that
stuff goes on and attitudes.
But Caleb has had some greatstudents over the years that
(30:32):
have included him.
This year, if you saw my post,the yearbook teacher was amazing
and including him in the bigyearbook field trip.
So it's, but it's not just uswanting that.
It's having a staff, aprincipal, a teacher, a special
ed teacher, having the supportsin place.
(30:52):
Just like Ariel said in yourother podcasts to be able to
work together to be able todevelop this environment of an
inclusive education.
And I have gone to our board.
I've asked them over the years.
Why can't we be the leader ininclusive education many years
ago, the state.
Education Department put out anarticle about Sanger Unified.
(31:13):
It was all lies.
You know, they were acting likethey had this big inclusive
environment, and they wereeducating special education
students.
God, it was not true.
None of it was true.
I mean, I was laughing at it.
I still have the articlesomewhere.
But the reality is they put outa big, I wrote that down, too.
I was writing notes.
They put out a big facade,school districts.
With numbers and stuff, butthat's not really what's going
(31:33):
on.
They'll take a kid who's maybedyslexic, right?
They'll take the dyslexic kidsand be like, Oh, well, we're
mainstreaming, they're included.
But are you including theseother students?
You know, that's my question.
Are you including, and it's nothappening.
I mean, it's not happening inour district.
I don't think it happens inother districts.
(31:58):
Yeah, I, I think something thatkind of always comes up for me
when it comes to advocacy is,you know, I haven't had to
really advocate very hard for myson.
I haven't had to, to advocate ashard as some of my friends have
had to.
My other, you know, I have a lotof friends that have disabled
(32:18):
kids, autism, ADHD, anddifferent things.
And I think something that, thatalways Kind of, I guess, comes
up for me or stands out to meis, I guess just the idea that a
parent would have to fight.
A system that really should bealready fighting for their
(32:42):
child.
Does that make sense?
Like, it just, it's just weirdto me that as parents, a lot of
us have to fight for, like, thefact that they would put out
false numbers, or that theywould kind of try to manipulate
numbers so that it's kind oftrue, but not exactly true.
Like, the fact that that's evena thing, it's just really...
(33:05):
What's that word?
It just makes you kind of jaded.
Disheartening?
Yeah, it's disheartening andit's like, I feel like, like
that's, that's where we send ourkids five days a week for how
many years?
And you would think it wouldn'tbe a system or like an
organization that parents wouldhave to fight against.
You would think it would be morelike, like, in my experience
(33:29):
with, with my son Riley, it'sbeen more of a partnership
where, you know, it's, it's beenlike, I, I've been able to trust
that they want what's best forhim.
And so it's, it hasn't been ahuge.
Thing for me a huge struggleAdvocating for him, but I know
(33:51):
for so many parents it is and soI guess like when when I think
about like What I would want toask you because Caleb's 16 now
you've been doing this for awhile How do you?
approach A system like that,that's so huge, that has the
money, that has the authority,and you're just this mom who
(34:14):
wants the best for their child.
Like how do you emotionally andmentally prepare yourself and
gear yourself up to advocate?
Like what's that been like foryou over the years?
I think the number one iseducating yourself and learning.
(34:35):
Fortunately, I speak English.
I have a master's degree.
I know how to research.
And we have to remember thereare thousands of kids across the
US whose parents don't have thesame education level who maybe
don't speak English.
And that's One of the reasons Ido the advocacy work to is
because I want to make sure I'mnot just representing my son,
but that I'm representing all ofour students and that this is
(34:56):
something that carries on downthe road.
But it is a difficult process.
You're coming up against aschool district.
A school board.
You maybe have board members whodon't understand, who have been
sitting on the board for 20years, who've never met a child
with a disability.
And when I speak disability,especially in this podcast, I'm
speaking Caleb's disability.
(35:17):
Mm-hmm.
Who've maybe never met anybodylike that.
Who has no idea that there'sIEPs.
I can guarantee you there ismaybe one person on the Sanger
Unified School District Boardthat knows what a 504 is and
knows what an IEP is.
Wow.
And so I think that that's ahuge, you know, that's a huge
concern too, is having peoplewho are governing our schools,
(35:39):
school boards, who know nothingabout special educational
education.
Our superintendent who's retiredor getting ready to retire, she
I met with her when she gothired on, you know, I thought,
okay, there's a change here.
Let's see what we're going todo.
I asked to meet with her and shedid.
She agreed to meet with me earlyon.
And in halfway through ourmeeting, she's like, I'll be
honest with you because myconcern was the classroom where
(36:00):
it was located at the highschool.
She said, I'll be honest withyou.
I don't even know where thecounty classroom is on the high
school campus.
And I said to her, you have onehigh school, one high school.
How do you not know where yourcounty classroom is?
And she said, well, I'm not veryfamiliar with special education.
Then how did you get the job?
Why are you here?
(36:21):
Because you had 1, 800 studentsat the time that were identified
as special education.
So how did you get here?
So, I mean, but there is,there's...
It's going up against thedistricts and fighting.
It does get tiring sometimes,and sometimes I have to shut it
off.
And I have to walk away and say,I need a breath from all of
(36:41):
this.
I need a minute from all of it.
I'm not the only parent.
I'm fortunate that in Caleb'sclassroom, I have befriended
several of the parents.
And when we had a big issueseveral years ago, we all came
together.
And there is power in numbers.
So if anybody takes anythingfrom this podcast, get to know a
couple parents.
In your special educationclassroom there are powers and
(37:02):
numbers and our lives are crazychaotic, but we worked it out.
We were able to manage to meet afew times went and presented to
our district over the issuesthat we were having and it
worked.
They don't like that we talk.
They don't like that the parentsall talk.
And then I'm lucky that I havesome other parents who their
children were saying you'reunified students.
They were not counting studentsand they've since they're in
their twenties now.
(37:22):
But they've been a good rolemodel for me and I've learned
from them and what they wantedfor their children and mistakes
that maybe they made and, and sothat's helped.
And although Sanger's big, it'ssmall.
So my husband's family has deeprooted here.
His grandmother graduated fromschool in Sanger.
I mean, they've been hereforever.
He, we know a lot of peoplebecause of that and I think that
(37:43):
makes a difference.
It should not.
It should not at all make adifference.
on how we decide to educate ourstudents with disabilities.
But for us, personally, it hasmade I believe it's made
somewhat of a difference.
One of the board members knowsmy father in law, and when we
were having some other issues,he popped onto campus one day,
you know, and he went intoCaleb's classroom, and all of a
(38:06):
sudden things start changingbecause of that.
So that's been part of theadvocacy and...
Several years ago, beforepandemic, I started going to
board meetings and presenting mymain thing was that classroom on
our campus at the high school.
I wanted it moved.
It was not moved.
They made some adjustments andbecause the campus, the school's
grown so much.
(38:26):
Now it's all part of the schoolbecause there's other classrooms
back there, but that wasn'tintentional.
That was because they didn'thave a choice.
But that's how I started goingto board meetings and you get
three to five minutes.
So I write out my topic and Iwould just try to talk to them
about different issues.
Knowing that they have no ideawhat's going on.
We have a new superintendent.
I think he knows a little bitmore about special education
(38:48):
than the last one.
So, I mean, I'm hoping it's abetter process, especially for
our younger students coming upthrough our system here in
Sanger.
But it's, again, you know, alearning process.
At times I felt very alone.
You know, my vision for my childis different maybe from the
other parents.
I remember I had a mom ask meone time about what's this
(39:08):
inclusion you're always talkingabout?
You know, what's this inclusion?
So I was explaining it and, and,you know, it's just, they don't
know, you know, if they're notgoing to trainings or they're
not, and then they're like, Oh,I like that idea, you know?
And I, so it just starts fromthere and just making it known
that I, you know, understand theIDEA and the IEP process and the
(39:32):
laws.
I think that's important.
I have a book.
Oh.
Have you seen this book?
I'll show it to you, but I knowit's not.
It's called the special, this iswhat I call my bible, Special
Education Law.
It's written by Wright's Law.
That was my first IB training Iattended.
I did have to pay for that toattend.
I wish I would have done thisbefore Caleb started the system.
(39:53):
Just amazing information.
I, this is all, you can see allthe tabs, tons of tabs.
It has all the laws andeverything in here.
And then I did, are you familiarwith the Brin Clinic?
Yeah, Jodi.
San Joaquin Law.
Yeah, so Jodi's, I did, I was inher first class.
That's where I got a lot of myadvocacy stuff from.
Amazing work that she's doing.
It's absolutely amazing workthere.
(40:14):
And that's, that's her wholepremise too behind that is,
inclusive education, even thoughher son's like Caleb's age, you
know, they're aging out.
It's still that inclusiveeducation and everything.
Yeah.
So, yeah.
What would you say has been likeyour biggest challenge as
Caleb's advocate over the years?
(40:35):
I think because you sometimes,you will sometimes form
friendships with staff,teachers, paraeducators.
But then when you have to holdthem accountable, that becomes
probably the biggest challenge.
Because you're like, wait aminute, I'm going to, I'm going
to step back and I'm going totalk to them first before and
(40:55):
see, can we get resolved thisway?
If it's not getting resolved,then I have to go on to the
director or the, you know, theschool psychs or.
You know, the coordinator of theprogram and all of that.
So that part's difficult.
Just, yeah, that's probably themost difficult part.
And then just being able to getwhat you're asking for because
we've asked for a line and we'venot gotten all of it.
(41:17):
Yeah.
Makes it difficult.
And draining.
It can be draining.
Mm hmm.
What do you do for yourself whenit's draining?
Like how do you, how do you workthrough that?
I'm pretty sure I was on fastforward most of Caleb's life.
In the last few years, I finallyrealized that I have to take
(41:37):
time for me.
I'm a better mom.
I'm a better advocate if I'mstepping away from it.
So I actually just started yoga,which is kind of crazy that I
did my first yoga class.
I've done three now.
So I started last week and Iwalk, I do power walking.
That's helped a lot.
Just.
And then separating myself fromit.
(41:58):
So, you know, if we're goingout, my husband and I, we're not
talking about what's going on.
You know, we're going out andwe're gonna have dinner and
we're gonna talk abouteverything else, but we're not
gonna talk about that.
Mm hmm.
And then I can always come backwith a fresh mind.
I don't do a lot of even Caleb'swork or advocacy work over the
weekends.
And Sundays I try, I've beenrecently now putting my phone
(42:18):
away, so I don't even have myphone on me just to say, okay, I
need to step away for a minuteand then Monday come back out at
full force, whatever is goingon, whether I'm back out at work
or I'm doing, you know, advocacystuff or working on Caleb's
stuff or Caleb's IEP.
Yeah, yeah.
What, like, words ofencouragement or wisdom would
(42:40):
you have for moms who are, Iguess, either dealing with...
With really stressful advocacyissues, or moms who are at the
very beginning of, you know,getting their child into the
system and, and trying tonavigate that?
Well, I mean, first of all, Iwould definitely, definitely
(43:03):
tell moms.
to educate yourself to learnspecial education law.
Now, locally, we have a lot ofopportunities.
We have the Bren Clinic, B R EN.
I think she's only acceptinglocal students into her clinic
now.
And I believe it's still onZoom.
So educate yourself, know thesystem, know your school
(43:23):
district.
Know what you want ahead of timebefore you go into the school
system, before your child goesinto the school system.
Know what you're looking forwhat your vision is for your
child.
Never sign anything.
Never ever sign anything.
Go home.
Get it out the next day and thenread through every single thing
(43:45):
on there.
I can't tell you how manyparents I've met over the years
who've signed paperwork, had noidea that they were signed,
didn't really read it.
And next thing you know, theirchild's in a completely
different school.
They didn't know that that'swhat they were signing.
That was my first advocacy caseout of Tulare Unified.
So that was an interesting caseto work.
Yeah.
And then just making friends andgetting to know other parents
(44:08):
who have children withdisabilities.
And.
Who are on campus with you,making friends with the gen ed
parents, making friends, likehaving that balance but there is
power in numbers.
There's by far power in numbers.
Yeah.
And then finding an advocate.
I think that's important.
The first few years of Caleb'seducation until I really could
grasp a lot, we had an advocatecome out with us.
(44:31):
The regional center will sitwith you on if your, your
child's regional center client,which ours is, we always have as
regional center.
Caseworker come out with usalways.
She don't say anything.
She just sits there.
But that's that extra person.
We had an advocate from EPU foryears come out and sit on IEPs
until, like I said, until I gota grasp where I'm like, okay, I
don't necessarily, an advocatecan change everything.
(44:53):
I just did a case last year andmom and I met.
We got it all ready.
She informed them.
She was having an advocate come.
I could speak for them becausesometimes they don't want you to
speak.
Sometimes they do.
We go into the meeting.
It's on Zoom.
Hour and a half.
Hang up.
Mom and I call each other.
What a debrief.
And mom says to me, Wow, I'venever had one of those meetings
(45:14):
last longer than 15 minutes.
Wow.
What a difference it makes whenyou plop an advocate into the
scenario.
Yeah.
So I was, I wasn't surprised.
Caleb's I think longest IEPmeeting was probably eight hours
or nine.
It was extended over three days,but that was probably his
longest IEP.
(45:35):
Our, our IEPs are typically two,three, four days, where they're
an hour.
Now they cut them down to anhour and a half.
So that's why I have multipledays of them.
If you've seen some of my posts,I don't sign anything and I
spend a significant amount oftime laying everything out and
reviewing everything from thelast IEP, the current one, what
was said actually.
I got the IEP.
(45:57):
They, they printed it out for meafter our last meeting.
I went through it and foundprobably seven different things.
They added that wasn'toriginally there from the
meeting.
Really?
Yep.
Wow.
Yeah.
Yeah.
So you kind of have, I don'tagree to everything either on
the IEP.
Sounds like you have to be verylike, you have to be on it.
You have to be on the ball forsure.
(46:19):
You do.
Yeah, you do.
You do.
And I guess too, like knowing.
Knowing the law, like you said,is important.
So like a lot of moms will belike, do I have to sign it?
How long do I have to sign it?
Or like I've heard situationswhere the school will come out
with the, with the IEP, likesign this, you know?
(46:39):
So yeah, I'm sure that's exactlywhat happens.
Yeah.
So knowing, knowing how long youhave and all those different
rules is.
It's huge.
Yeah.
It is.
It is huge because the districtwill use that to their
advantage.
They will use what the law isand especially knowing, you
know, most parents don't knowwhat the law is.
(46:59):
They don't have anunderstanding, not an
understanding.
They just don't realize there's,there is a lot there to protect
our kids.
And you know, I want to believethat a big chunk of people in
education want to be there forthe right reasons.
That they love our kids and theywant to include them and they
want to make this work is, is aninclusive education model going
(47:21):
to happen in my lifetime?
Probably not.
It's, it's a whole systemicissue, right?
It's a systemic problem.
It starts at our universities.
If you look at the Fresno StateCredential Program, they don't
educate teachers together.
They don't educate our K 12teachers with our special
education teachers.
It's a separate program.
(47:41):
Well, let's talk about whyaren't we working with them
together.
When I was in the credentialprogram myself, I had one class
for special education.
When I was in my master'sprogram and did the PPS, I had
one class in special education.
So, I mean, we're not, we're nottraining our future teachers.
To work with students who aredisabled, who are different and
(48:07):
to work cooperatively withspecial education.
So that that's a big problem.
It's not just Fresno State.
I mean, I'm sure the otherprograms run the same but that's
because that's our college here,our university.
So that's, you know, that's aproblem.
That is, that is a problem.
It begins there, but candistricts start making changes
now?
Of course they can, you know,they can work with universities
(48:27):
and.
You know, there's so much thatcan be done in this day and age
with technology, like there's,it's limitless, you know, it's
thinking outside the box justbecause we've always done it
this way, doesn't make it right.
Yeah, I think that was somethingthat Arielle said in that
podcast episode you mentioned isthat like, when she went to get
(48:48):
her degree, she automaticallydid the special education piece
also, even though she didn'tintend to use it or work in
special education.
Yeah, I'm sure that would behuge.
Yeah, it's definitely, I mean,we need to change.
And there is a difference, andyou may know this, but there is
(49:09):
a difference between inclusionand mainstreaming.
Caleb is mainstreamed.
A fully inclusive specialeducation student, disabled
student, would be on the rosterin every class would be part of
that classroom.
So Caleb is not fully included.
Part of his day is spent in aspecial day class.
I don't agree with that eitherbut that could be a whole nother
episode too about segregatedclassrooms and segregated
(49:31):
schools.
He is mainstreamed and we haveworked really hard and we are
very lucky we've been able tohave him mainstreamed in English
and history and even we triedmath one year.
In high school, he's doneyearbook.
Of course, pandemic set a lot ofthings back.
He does student government.
Caleb's the first student with adisability of his type of
(49:54):
disability that has ever beenable to do student government.
So, that was a big move.
Sixth grade camp, which is verycommon around here.
I didn't know anything about ituntil I actually had boys and
they went into school systems.
You know, it's kind of a rite ofpassage.
I'm going to guess, even as Isay this now, Caleb is the only
(50:16):
Fresno County student.
And the only student with histype of disabilities that was
able to attend sixth grade campwith his sixth grade class from
the middle school that he wasin.
And so that was a, you know, bigsignificance for him.
Something new, and I just wishwe could have this all around
that's happening in our highschool.
And I want to shout out aboutit.
(50:37):
They have, and it came from thePE teachers, Gen Ed PE teachers,
they want to do a friends withPE type of situation class, and
so they've developed this classfor Gen Ed students, and special
ed students will take a Gen EdPE class, and they'll be paired
up together like buddies.
For the class.
So that's going to start thisfall.
That's cool.
(50:57):
And that would be kind ofexciting to see.
Yeah, I think I love theinitiative.
I they're gearing it towards theteaching students because we do
have a pathway at our highschool for teachers.
And I love that.
I love That, and they hadalready been, when we had his
IEP meeting, the first class wasalready full.
Wow.
And students already did signup.
Yeah.
That's awesome.
(51:18):
Yeah.
So it's those type of changes,right?
Okay, so we did that for PE, butnow can we do it for maybe an
art class?
Or can we talk about doing itfor an English class?
You know, there's just differentways to kind of look at that.
Can we provide the rightsupports, the para educators
that we need?
Yeah, that'd be awesome.
And like you said, I think inthe beginnings, you know, it
(51:39):
doesn't just benefit thestudents.
It's, with the disability, itbenefits the students that get
an opportunity to learn fromthem, you know, cause there,
there are so many things tolearn from kids and students
with disabilities.
So it benefits everybody.
Yes.
Yeah.
(51:59):
Yes.
Well, thank you so much forjoining me today and having this
conversation.
I really appreciate it.
Well, thank you for inviting me.
I mean, I love to share ourjourney and Caleb's story as I
call it.
He's, you know, taught me a lotin life, just really opened our
(52:20):
eyes up as parents.
We see things so differentlynow.
But it, it's.
It's been a, it's been ajourney, but there's definitely
been some really good times onit.
And, and I love seeing himexcited, like our yearbook trip,
you know, he just was loving itand in heaven.
And it was exciting.
He loved the bus ride and justbeing included was so big for us
(52:40):
and we had no idea the teacherwas doing that.
Yeah.
We.
It wasn't until the IEP meeting.
Oh, by the way, Caleb in theyearbook, the trip, I was like,
what trip?
And so it's kind of exciting.
So yeah, I, I, I mean, if Ileave you with anything and your
listeners with anything, it'sdefinitely educate yourself
about special education law andfind some parents who are on
(53:01):
your campuses and get to knowthem.
And, You know, that's how we'regoing to start changing things
and going to school boardmeetings and breaking down these
barriers and these beliefs thatpeople have, you know, presuming
competence.
That's another thing.
Like, always presume competence,no matter what as a parent, as
an educator.
(53:21):
Definitely.
But thank you.
I do appreciate it.
It's my first podcast.
Yeah.
Thank you so much.
Yeah.
You did great.
Thank you.
Thank you.
Thank you so much for joining mefor another episode of rad mom
radio.
If you'd like to get in touchwith me, you can send me an
email.
My email address is rad momradio at gmail.
com.
You can also find me onInstagram at rad mom radio.
(53:44):
Hope you have a great week and Iwill talk to you soon.
Bye.
Hello and welcome to rad mom radio a podcast
dedicated to moms and all theirfavorite topics My name is
natalie and i'm your host Helloand welcome back to rad mom
(00:24):
radio, thank you for joining mefor another episode I hope that
you're having a great week sofar.
It's almost the end of summer.
I think our last 100 degree dayhere in Fresno is Thursday.
Fingers crossed.
Super exciting.
So that means it's fall.
I mean, sorry.
Sorry, not sorry.
(00:45):
It's fall.
I haven't had my first pumpkinspice latte yet.
I know a lot of you have.
I don't know what I'm waitingfor exactly, but I'm still
excited, you know, thateveryone's enjoying them, so.
I have a great episode to sharewith you this week.
I got to interview a local momnamed Stacy.
(01:06):
Stacey has two sons.
One is college age and one is asenior in high school.
Her youngest, Caleb, is a seniorin high school this year.
And Caleb is diagnosed withAngelman Syndrome.
So you'll get to hear all aboutthat and what Angelman Syndrome
is, what it looks like, how itimpacts a person.
(01:28):
And Stacey is very knowledgeableand experienced in advocacy,
like school based advocacy, sowe talked a lot about that.
We talked a lot about Stacey'sexperience in advocating for
Caleb in the school system, justwhat that's been like for her as
a mom.
Different challenges she hascome across.
(01:49):
We also talked about kind of,you know, her beliefs about what
a classroom should look like,how it should support its
students with special needs.
So this was a really goodinformative episode.
I really enjoyed my conversationwith Stacy.
So thank you so much for joiningme this week.
Big thank you to Stacey for yourtime and just for coming on and
(02:10):
chatting with me.
This is my interview withStacey.
Hi Stacey.
Welcome to Rad Mom Radio.
Hi Natalie.
Nice to have you here with metoday.
(02:32):
Thank you for inviting me.
Yeah, definitely.
You know, we haven't reallygotten a chance to get to know
each other, but I do know thatyou're a local mom with, you
know, a lot of experience inadvocacy in the school system,
and you have a child withdisabilities.
So, I really, you know, wasinterested in having you come on
(02:53):
to chat.
Before we get started with,like, what we're gonna talk
about today, I have a thing foricebreaker questions.
I love, like, knowing littlerandom things about people.
And I was just kind of lookingat your Facebook, and there's,
you know, I like to...
To come up with questions thatare specific to the person.
(03:13):
And there were a few things thatreally stood out to me about
what you post online.
One of those is just the men inyour life.
So you have two sons, right?
Yes.
Okay.
Yes, I do.
And then your husband.
And so I was just, it just lookslike you guys are like super
close and tight knit.
(03:34):
It looks like your sons are veryclose.
And I just really, I thoughtthat was really sweet.
I think there was some kind oflike montage you had of your
sons together, like in picturesover the years.
And it was super cute.
So yeah.
So what I wanted to ask you waslike, what is something that is
(03:54):
remarkable or special to youabout each of the men in your
life?
Okay.
So, I mean, I did have thequestions ahead of time.
So I really was thinking aboutthis.
And this is going to be an oddanswer, but reality is they all
make me laugh.
So they, it is interesting howthey each have this sense of
(04:17):
humor.
And I think with our lives, itis so important to be able to
laugh.
And yes, people who know myson's nonverbal and are
listening to the beginning ofthis.
Are going to wonder how doesthat happen?
But Caleb's facial expressionsare just out of control
sometimes.
Driving with him, if I'm likedriving faster or I hit my
(04:40):
brake, I mean I get that lookfrom him.
You know, basically, Mom, whatthe F are you doing?
Like, you know, and then he'swatching me drive because he's
not sure what's going on.
So that's how I, I can see hishumor in that.
And just through his facialexpressions.
Both my husband and my olderson, Ryan, are just constantly,
(05:00):
it is like non stop.
We are constantly laughing inour house.
And I think I'm the brunt of alot of their, their jokes and
stuff because I'm the only girlin the house.
But, that's, I think that is theremarkable thing about the three
of them.
They just always, I'm alwayslaughing.
My son was just, my older onewas just here visiting.
And I mean, I think I laughedthe entire week he was here.
(05:23):
It was so funny.
So that is, that is, yeah.
It makes life a lot easier too.
Yeah.
Laughter is huge.
Being able to laugh and all thatstuff.
Yeah.
Definitely.
The other thing that reallystood out, it's gonna sound so
silly, that stood out to meabout your, your page is
(05:44):
charcuterie boards.
And I, and I have a fascinationwith char, not a fascination, I
just really appreciatecharcuterie.
So I was thinking about like,and I don't even know what
context this comes up in yourlife.
If you make them, or you hostparties, I don't even know, but
I saw them and I was like I'mgonna ask about it.
Yeah.
So, like, if you could buildyour dream charcuterie board,
(06:06):
what would be on it?
Well, I mean, my dream board isan interesting question.
I'll give you a littlebackground.
So growing up, there was no namefor charcuterie board.
We didn't have that term, butwe...
Would have people come over andvisit and my nana and my mom
would always cut up meats andcheeses and we'd have breads and
(06:28):
olives and I was just raisedthat way and then a few years
ago all of a sudden everybodystarted using this term
tricotery board and I was allwait a minute.
I've been doing that forever.
Yeah, so That's how that is.
So some of most of them I postare ones that I make for parties
and stuff, but dream board, Imean I don't know.
(06:50):
A dream board for me basicallywould be cheeses and vodka and
like lemonade or vodka andorange juice on the side.
And I just think food bringspeople together.
So it's just nice to, I couldthrow one of those out and serve
them, but I'm a big cheeseeater, breads, crackers, as a
matter of fact, we, I make alittle mini charcuterie boards
(07:11):
every weekend.
That's our, like our luncheither Saturday or Sunday with
some fruit and some other thingson it.
So.
Yeah, it's just been, I don'tknow, it's kind of fun now
because everybody knows whatthey are.
Yeah, I didn't even think aboutthe fact that it may not have
really had like a, a term prior.
I, I mean, I, I was watching areality show a few years ago and
(07:33):
they went to a restaurant and Iwas like, what are they
ordering?
So I had to look it up and I waslike, Oh Lord, I know what that
is.
Yeah.
Yeah.
Oh, when you heard charcuterie,you're like, what the heck is
that?
Yeah.
I was like, what is that?
Cause we never use those terms,but yeah.
Yeah.
Growing up, we always had likecheese and salami and pepperoni
and olives and nuts and you nameit bread, but not normally
(07:57):
crackers growing up.
We always had a bread that weserved with it, but yeah.
Yeah.
So it's, it's just kind of fun.
and drinks bring people togetherand you can sit and laugh.
There we go with the laughteragain.
Have a good time.
Yeah.
Yeah.
So kind of like what, what Iwanted to, you know, talk to you
(08:17):
about.
Today was, you know, kind ofstarts with Caleb and.
You know, his disabilities andthen kind of how that has, I
guess, created in you, you know,the need to be an advocate, you
know, because we are our kidsbiggest advocates and it's a
huge learning curve, you know,learning how to be an advocate
(08:38):
for your child.
And, and I think that youradvocacy experience is, is
different than what I feel likeI normally come across.
So definitely want to ask you,you know, about that and what
that's been like for you.
But before that, I did want toknow, like, what's your, like,
your career background?
Could you tell us about, like,your career and your family?
(09:00):
Yes, definitely.
I'm actually a collegecounselor.
I am very lucky and fortunate towork part time.
Decision that, you know, myhusband and I came a few years
ago, decided it was best for mebecause I can also do advocacy
work with my part timecounseling schedule.
I have a master's in counseling,went to Fresno State.
(09:21):
I've predominantly worked myadult life in some type of
education form.
You know, going to college, Iwas a para educator for Fresno
Unified, so that was way beforeCaleb.
So that gives me, you know, Ihave that kind of perspective.
I worked as a career counselorout in Mendota Unified for a few
(09:41):
years, and I did some substituteteaching, which was really eye
opening.
And then I got hired on at thecollege and I've been there
about 16, maybe 17 years.
And then the last 12 years as apart time counselor.
So that's my, my career.
And I love, if you read my post,you'll know, I love my job.
I love my students.
(10:03):
And I, I, you know, get aperspective on working with
disabled students at the collegelevel.
Cause it's very, very differentthan the K through 12 system.
And kind of, like, leading into,like, Caleb, you know, can you
tell us more about Caleb andwhat his diagnosis is, or does
(10:24):
he have more than one diagnosis?
Yeah, I, Caleb is 16, and he wasdiagnosed with Angelman Syndrome
when he was 18 months old.
And it, with, he doesn't haveanother diagnosis.
But there is a lot that comeswith Angelman Syndrome, so Caleb
does have seizures, they'recontrolled with medication, but
(10:46):
seizures are very common amongstpeople with Angelman Syndrome.
He is nonverbal, he has ataxiaI'm trying to think of what
else.
I'm drawing a blank on it.
But that's, that's pretty muchCaleb in a nutshell, is that he
has Angelman syndrome.
(11:06):
It's not common.
It's like one in 15, 000.
Okay.
So it's pretty rare.
Although it's like buying a newcar.
When he gets diagnosed, youstart seeing other, you're out
and about, and you'll see peoplewith Angelman syndrome.
But in the Valley, and not thatI know everybody that has
Angelman syndrome, there's maybea handful of people that have
what we call AS.
(11:27):
I mean, just over the years anddoctors who've reached out about
certain patients, I would saymaybe 20 to 30, if that like
it's pretty, yeah.
And Sanger and our, I mean,there might've been one other
person and he's older that wentthrough the district that has
Angelman syndrome.
So it's pretty like not common,maybe misdiagnosed and possibly
(11:51):
could be misdiagnosed for autismor cerebral palsy.
And I think that.
It's happened a lot.
I know the Angelman SyndromeFoundation has worked hard to
get the stuff out about, I'mtrying to think of how they, you
know, to doctors and hospitalslike looking at maybe this is a
possibility for a diagnosis orwhatever.
(12:12):
How would you describe tosomeone what Angelman Syndrome
is?
Well, it's a deletion ofchromosome 15.
And so, I mean, really, he's,he's missing a part of his
chromosome, the maternal part,if I'm correct, on the
chromosome.
Caleb has the most common formof Angelman syndrome, which is
the deletion, and of that wewere doing a study when he was
(12:33):
younger down in San Diego, justa natural history study, because
Angelman became a diagnosis inthe late 80s, early 1990s, so
it's fairly, fairly newdiagnosis.
And it was Dr.
Harry Angelman, that's how thename became Angelman, not
because they're angels, becausethat was the doctor's name who
discovered the gene and realizedthere were similar
(12:54):
characteristics as far as likelaughter, kind of their jawline.
Just a happy demeanor theataxia, the wide gait and stuff
and not all people with Angelmansyndrome walk.
Some of them are in wheelchairsand don't have the ability to
walk.
Caleb was tested to see the sizeof his deletion and it was years
(13:16):
ago, but if I remembercorrectly, he was the bigger
deletion.
And I remember the doctor in SanDiego saying that she was so
surprised.
Because they typically see thekids with a bigger deletion who
don't walk, who have moreseizures and just struggle a
little bit more.
And then she proceeded to tellme that's why we do this study
because we want to see acrossthe board what it looks like.
(13:38):
Is it the kind of thing that,that a doctor could see when,
when a baby is born?
Or is it something that developsover time and then you would,
you know, approach anevaluation?
It's not anything you could see.
I Caleb's pictures.
Right.
So, I mean, I mean, if he's notcommunicating the way he
(14:02):
communicates, one of the ways hecommunicates, you probably
wouldn't even know he had adisability if he's just sitting
there.
So, it is something that whenthey're not reaching milestones
that's when you start looking atwhat's going on.
And that's exactly what it wasfor us.
In about five months, six monthsI noticed Caleb really wasn't
doing anything.
(14:23):
So, he would just...
He was just laying there.
He wasn't rolling.
He wasn't moving.
He barely moved his head.
I said, something's not right,like, but my older son was
delayed too.
He did a lot of things likelate, my older son didn't walk
till he was 18 months.
So I'm like, I don't know, likemaybe, and I asked the
pediatrician, I remember askinghim and, and he just kind of
(14:45):
blew me off, which I think is atypical experience for a lot of
us.
And so I let a couple of monthsgo by and.
I was like, you know what?
I need to get him into theCharlie Mitchell clinic, which
is our clinic up at thechildren's hospital.
And we were able to talk to afriend who got us into the
clinic.
And even that doctor, who isstill Caleb's doctor, he has,
(15:07):
he's actually still Caleb'sdoctor.
But even he said, oh, don'tworry about it, mom.
Kids sometimes don't do anythinguntil they're a year old.
Well, when he was a year old andhe still wasn't rolling, I said,
okay, something's going on here.
Yeah.
And then we started the earlyintervention process and none of
them mentioned anything to me.
(15:27):
And the doctor said, okay, well,let's look at, you know, OT, PT,
never brought up speech.
Speech was something that camedown the road.
And in this process, my husbandattended a conference and the
man presenting.
Dr.
Modell is his name, was the headof the autism center at Sac
State at the time.
So afterwards, my husbandapproached him and said, Hey,
our son's really delayed, likewe don't know what's going on.
(15:50):
And so I reached out to him,he's like, have your wife reach
out to me.
He calls me one day, we'retalking on the phone and he's
asked me, can you send somepictures?
of your son.
And this was old school, right?
So I had to go home, get on thecomputer and email.
It wasn't like I was on thephone and could send it to him.
And so immediately he emails meback and says, I am not a
(16:12):
medical doctor, but I he hascharacteristics of Angelman
syndrome.
And then I call him and I said,how do you know that?
He said, well, when I did mydissertation, I worked with two
clients who had Angelmansyndrome and he did his
dissertation on Angelmansyndrome.
And I was like, okay, so then westarted bugging the doctor, the
(16:35):
pediatrician, to get us into thegenetic doctor.
And that took a while.
And I remember leaving him amessage, the pediatrician, the
pediatrician called me back andleaving me a message.
He said it wrong too.
He said, your mom, he said, mom,he always says that, mom, your
son does not have Engelmansyndrome.
And he said, but I will referyou.
So We went into again Children'sHospital with Dr.
(16:58):
Shin.
Dr.
Shin and I still stay in touch.
He's moved on out of the Fresnoarea.
We sit down, he's looking at ourson and he's looking at him and
we, we did not tell him priorwhat we thought, what we had
heard.
We wanted to see what hethought.
And 45 minutes into theappointment, he said, well, mom,
I have some thoughts, butthere's some things that he
doesn't have thecharacteristics.
(17:19):
And I finally was like, spit itout.
Spit it out.
And then he said, I, I believehe has something called Angelman
syndrome.
And at that point, my husbandand I knew, and we both broke
down and the reality of howdifferent our life was going to
be hit us and then he asked us,have you heard of it?
And we went into the whole spielof how we heard, heard about it.
(17:41):
And he said, I'm not a hundredpercent.
Let's do the blood work.
And then less than two weekslater, the blood work came back
and he, he was positive forAngelman syndrome.
I had to ask the genetic doctortoo.
Like, how did you know?
Well, he worked on us Angelmanstudy in Texas.
And so he worked several yearswith children who had Angelman
syndrome.
So he, like I said about buyingthe car, you know, he knew some
(18:03):
of the characteristics andthat's.
How our journey really began at18 months old and our world
changed tremendously changedforever.
Yeah.
And then we just started pushingforward and learning and growing
and all of it.
What, what is Caleb's like?
What is his experience beenlike?
(18:24):
Has he always been in like themainstream, not mainstream
school, but like, has he alwaysgone to like a public school or
have you guys had him at home?
What's that been like?
Okay.
So I, you know, I didn't know alot in the beginning as most
parents don't in California andI suspect, I think it's that way
across the U S school districtsstart.
(18:46):
At three years old, providingservices all the way through 22.
Well, 21, 364 days old is whatthe districts do.
And so I, I didn't have any clueor understanding of what that
was going to look like for us.
I did realize at some point itwas not going to be easy having
(19:06):
Caleb go to a, you know, atypical daycare or a typical
preschool that there were goingto be challenges.
I was very, again, veryfortunate that we were, I was
able to attend Angelman SyndromeFoundation conferences, so I'm
learning from other parents andI, at the time, was working full
time, and so I was like, okay,he's gonna have to go into the
(19:29):
preschool system and not, Ithink most of California's
districts are like this, theyhave, they have a SELPA Fresno
Unified has their own, Clovishas their own, Sanger's part of
the Fresno County SELPA, Thecounty students have been a
negative connotation since Iworked in Fresno Unified 30
(19:49):
years ago.
It still is today.
The county doesn't work withdistricts.
That's a huge problem.
I mean, I could spend two hoursjust talking about that and how
we're not working together andthey're those students.
The county students.
If you're on, if you go to anynumber of our high schools,
Madera our school, yeah, ourschool Central Unified made some
(20:11):
changes with the countystudents.
Their classrooms are always inthe back.
They're always away and they'resegregated from the rest of the
school.
It's very common for the countystudents to be that way.
But the number one thing I wantto get across to people is my
son and those in his classroomare Sanger Unified students.
The county provides a service.
(20:33):
They are not Fresno Countystudents.
They are Sanger Unifiedstudents.
The county provides a service.
Our district pays the county toprovide the special education
services to our children.
But it has caused mainstreamingand inclusion.
It's put such a divide.
That it's, it's almostimpossible to get out of it.
(20:55):
When I was doing my internshiphours for grad school I got to
do the last two weeks in MontaVista which is a very
segregated, School in EasternFresno County.
But through that I was able togo out to one of the schools in
another local district, not inSanger.
I went in asking for the teacherof the county program.
(21:16):
They had no idea who I wastalking about.
I'm like, this teacher and thesestudents are on your campus.
So I did that for a few daysbecause I was kind of testing it
out.
But even after my two weeksthere, they, they had no clue.
The front staff in theelementary school.
So it is that's something thatneeds fixed.
Yeah.
Yeah.
There's a lot that needs fixed,but that's one of them.
Yeah.
(21:37):
So Caleb started in, I didn'tknow I, like I said, I didn't
know, I didn't understand thesystem at the time.
And so we right away, we werepresented with all the options
in Sanger Unified schooldistricts are notorious for
doing that.
They are very notorious forsaying, okay, you have this, and
this is, you're only twooptions.
(21:59):
Sign this paper, sign thatpaper, not necessarily, throwing
stuff in there that parents areso overwhelmed and, And if you
do have a child with adisability and you're listening
to this, you know, in thebeginning, it is so overwhelming
to come to terms and theunderstanding of raising a child
with a disability.
All of a sudden, this child whoyou thought was going to go to
freaking USC and play footballis now going to have to be cared
(22:25):
for for the rest of his life orher life.
And so district's pride.
play on that districts.
They use that to theiradvantage.
They swoop in with parents andthey overwhelm them with
paperwork.
And we're not researchingthings.
And a lot of times, especiallyin California, we have both
parents work and they're tryingto provide for their child.
(22:46):
They're trying to deal with thisdiagnosis.
They're trying to do this andthat.
And then districts come in.
And they're like, okay, nextthing you know, you're in a
county program.
The biggest, biggest mistake,and my husband will agree with
me, that we ever did was agreeto allow Caleb to be in the
county program.
We were never able to get himout of the Fresno County
program.
And it's not that we've had somegood teachers, not all.
(23:08):
We've had some good teachers,we've had some good parents
through the county, but it'sbecause of that negative
connotation that comes withbeing a county student.
And the fact that there aren'tmainstreaming and inclusion
opportunities, there's noinclusion opportunities at all,
but those aren't available.
People look at our, the countystudents.
Like they're nothing and that'sa huge problem that we have not
(23:28):
only in our district, but acrossthe board in California.
So that's how kind of our storystarted.
We ended up with the County.
I mean, I knew things from sometraining, not to sign IEPs to go
in.
If you're, you know, go in withan advocate or somebody else,
which we did Caleb's first IEPmeeting.
So imagine this, if you haven'tbeen through one first IEP
(23:51):
meeting, we walk in.
And there's 15 people from thedistrict and the county there.
I had known that was going tohappen because I had parents
tell me ahead of time.
And we took an advocate with us.
So anytime you take an advocate,it changes the whole dynamic of
the meeting.
And I have learned and grown somuch from that first meeting.
But yeah, I would have foughtfor an inclusive education that
(24:15):
he would have been in his homeschool.
Caleb attended one, two, threeelementary schools.
So I would have definitely, Iwould have definitely fought for
him to be fully included at hiselementary school where his
brother attended elementaryschool with the right support.
If everything I know now, Icould go back.
That is the number one thing Iwould do.
(24:36):
It's just so important.
I can't stress that enough tohave our kids educated together.
I just spoke with a mom theother day and I said, because I
have these same worries.
As most parents do, Oh, we'regoing to put my kid who's
disabled into a classroom withgeneral ed kids.
Like, how's that going to look?
Are they going to be disruptive?
(24:57):
Are the other kids going tolearn?
And that was me.
I'm not going to lie.
That was me.
I no longer believe thosethings, but that was me.
And what I've learned over theyears, one of the biggest things
I learned is when Caleb finishesthe school system next year,
when he actually graduates thehigh school, because then he'll
go into the adult transition.
We're just throwing them to thewolves because guess what?
He's going to live in thiscommunity.
(25:18):
With all those same people hewas segregated from all those
years ago.
And that they've separated him.
And I think that that's, that'sthe number one thing is they
will live and work in acommunity together long after
the high school years and themiddle school and elementary
years.
When you're saying Countyprogram, do you mean like an SDC
(25:41):
or like a special day?
Class.
Yes, yes.
So under the SELPA, and if youlook at it where school
districts didn't maybe haveenough funding to run all the
special education programs,which I've learned over the
years is a big load of prep too,because they do get, when I
listened to your podcastearlier, They do get actually
(26:05):
more average daily attendancefor students with disabilities
than, than the gen population.
So they're, the money's there.
And Sanger is such a bigdistrict now that they should be
their own cell phone like Clovisand Fresno.
But that's what smallerdistricts, you know, Parlier
Mendota because they don'tnecessarily have the means or
the whatever, then that's whenthey bring the county program
(26:27):
into work in the SDC class.
The special day class is whatthey do.
They don't do the resource.
As far as I know, they don'thave the RSP programs through
the county.
Those are run through districts.
But in our SELPA, it would belike Kings Canyon Unified,
Sanger Unified, Parlier Unified,Mendota, all those like outlying
(26:49):
schools.
In Fresno County, you know,whoever else is in, I don't know
who else is in Fresno, but yeah.
So if you could go back, youwould have pushed for Caleb to
be in an inclusion program fromthe beginning, we would've
developed an inclusion program.
Mm-hmm.
Mm-hmm.
we, we would've had to havedeveloped it.
(27:10):
Mm-hmm.
Yeah.
It's not anything that any ofthe districts in this area.
Fresno to Larry Kings County.
Nobody practices that.
You obviously have friends inall those areas.
So we would have developed aprogram for him and we would
have fought the district.
We would have held off onputting him into school at
three, but I didn't know that Ididn't know any of that was an
option.
I didn't, like I said, I, I wasunder them in my, my opinion at
(27:32):
that time was like, Oh, I don'twant to distract the other kids.
But I've since changed myopinion and I can't go back.
I can only go forward and I canhelp other.
Parents along the way and talkto them about the inclusive
education.
Yeah.
Well, it's definitely notpresented as an option.
(27:54):
You know, I remember when myson, he was, he was evaluated
through Fresno Unified, sothat's where he started.
And so I remember his first IEPwasn't like, well, we could do
this.
So we could do this.
Is this kind of like, this iswhat.
He would do and so you're like,okay, and you're right.
Like in the beginning, it's veryoverwhelming.
(28:14):
You don't know what the hellyou're doing.
And so when someone's lays out aplan for you, it's like, thank
god someone has some kind ofidea of what we're supposed to
be doing so Yeah, and and Idon't know like how often do we
really see that where we see achild with a disability in a
classroom with with gen ed kids,you know, right?
(28:38):
We rarely see it I mean, it israre there are the, the hidden
disabilities, maybe, you know,the dyslexia deaf students, you
know, yes.
You're going to see that.
Are you going to see my son whohas significant disabilities?
I'm not going to sugarcoat that.
I mean, he does in a classroomwhile you are, because he is
(29:02):
45%, 48% mainstreamed.
He is, and I have that one ofyour questions.
I wrote that down.
I was like, Oh, I want to makesure I talk about this stuff
with him.
And it was years of, ofadvocating and fighting the
district to go ahead and getthe, the okay on some of the
stuff that we do with them, butno, we don't see students like
(29:25):
that, but I've been lucky enoughto present.
I presented Fresno state almostevery semester.
I've presented for Caleb whenone of his elementary schools
and then seventh and eighthgrade, I was able to go in and
talk with the, his classes then.
And the one thing I always sayis, especially with the young,
younger kids, one of youundeniably, one of you will have
(29:48):
a child with a disability likeCaleb.
It's just the way life is.
And that's, what's going tohappen.
And Caleb, you know, I used tobelieve, Oh, it's so good for
Caleb, which it is.
Jeanette is good for him, butthe flip side of it is.
We're we're raising and if we'repracticing inclusive education,
we are raising compassionatestudents and students who take a
(30:11):
look at Caleb and say, wait aminute, we're all different, you
know, and that's okay, it's okayto be different.
It's way easier to do inclusiveeducation in elementary school.
It's more difficult in middleschool and high school.
And, you know, we all knowteenage hormones and all that
stuff goes on and attitudes.
But Caleb has had some greatstudents over the years that
(30:32):
have included him.
This year, if you saw my post,the yearbook teacher was amazing
and including him in the bigyearbook field trip.
So it's, but it's not just uswanting that.
It's having a staff, aprincipal, a teacher, a special
ed teacher, having the supportsin place.
(30:52):
Just like Ariel said in yourother podcasts to be able to
work together to be able todevelop this environment of an
inclusive education.
And I have gone to our board.
I've asked them over the years.
Why can't we be the leader ininclusive education many years
ago, the state.
Education Department put out anarticle about Sanger Unified.
(31:13):
It was all lies.
You know, they were acting likethey had this big inclusive
environment, and they wereeducating special education
students.
God, it was not true.
None of it was true.
I mean, I was laughing at it.
I still have the articlesomewhere.
But the reality is they put outa big, I wrote that down, too.
I was writing notes.
They put out a big facade,school districts.
With numbers and stuff, butthat's not really what's going
(31:33):
on.
They'll take a kid who's maybedyslexic, right?
They'll take the dyslexic kidsand be like, Oh, well, we're
mainstreaming, they're included.
But are you including theseother students?
You know, that's my question.
Are you including, and it's nothappening.
I mean, it's not happening inour district.
I don't think it happens inother districts.
(31:58):
Yeah, I, I think something thatkind of always comes up for me
when it comes to advocacy is,you know, I haven't had to
really advocate very hard for myson.
I haven't had to, to advocate ashard as some of my friends have
had to.
My other, you know, I have a lotof friends that have disabled
(32:18):
kids, autism, ADHD, anddifferent things.
And I think something that, thatalways Kind of, I guess, comes
up for me or stands out to meis, I guess just the idea that a
parent would have to fight.
A system that really should bealready fighting for their
(32:42):
child.
Does that make sense?
Like, it just, it's just weirdto me that as parents, a lot of
us have to fight for, like, thefact that they would put out
false numbers, or that theywould kind of try to manipulate
numbers so that it's kind oftrue, but not exactly true.
Like, the fact that that's evena thing, it's just really...
(33:05):
What's that word?
It just makes you kind of jaded.
Disheartening?
Yeah, it's disheartening andit's like, I feel like, like
that's, that's where we send ourkids five days a week for how
many years?
And you would think it wouldn'tbe a system or like an
organization that parents wouldhave to fight against.
You would think it would be morelike, like, in my experience
(33:29):
with, with my son Riley, it'sbeen more of a partnership
where, you know, it's, it's beenlike, I, I've been able to trust
that they want what's best forhim.
And so it's, it hasn't been ahuge.
Thing for me a huge struggleAdvocating for him, but I know
(33:51):
for so many parents it is and soI guess like when when I think
about like What I would want toask you because Caleb's 16 now
you've been doing this for awhile How do you?
approach A system like that,that's so huge, that has the
money, that has the authority,and you're just this mom who
(34:14):
wants the best for their child.
Like how do you emotionally andmentally prepare yourself and
gear yourself up to advocate?
Like what's that been like foryou over the years?
I think the number one iseducating yourself and learning.
(34:35):
Fortunately, I speak English.
I have a master's degree.
I know how to research.
And we have to remember thereare thousands of kids across the
US whose parents don't have thesame education level who maybe
don't speak English.
And that's One of the reasons Ido the advocacy work to is
because I want to make sure I'mnot just representing my son,
but that I'm representing all ofour students and that this is
(34:56):
something that carries on downthe road.
But it is a difficult process.
You're coming up against aschool district.
A school board.
You maybe have board members whodon't understand, who have been
sitting on the board for 20years, who've never met a child
with a disability.
And when I speak disability,especially in this podcast, I'm
speaking Caleb's disability.
(35:17):
Mm-hmm.
Who've maybe never met anybodylike that.
Who has no idea that there'sIEPs.
I can guarantee you there ismaybe one person on the Sanger
Unified School District Boardthat knows what a 504 is and
knows what an IEP is.
Wow.
And so I think that that's ahuge, you know, that's a huge
concern too, is having peoplewho are governing our schools,
(35:39):
school boards, who know nothingabout special educational
education.
Our superintendent who's retiredor getting ready to retire, she
I met with her when she gothired on, you know, I thought,
okay, there's a change here.
Let's see what we're going todo.
I asked to meet with her and shedid.
She agreed to meet with me earlyon.
And in halfway through ourmeeting, she's like, I'll be
honest with you because myconcern was the classroom where
(36:00):
it was located at the highschool.
She said, I'll be honest withyou.
I don't even know where thecounty classroom is on the high
school campus.
And I said to her, you have onehigh school, one high school.
How do you not know where yourcounty classroom is?
And she said, well, I'm not veryfamiliar with special education.
Then how did you get the job?
Why are you here?
(36:21):
Because you had 1, 800 studentsat the time that were identified
as special education.
So how did you get here?
So, I mean, but there is,there's...
It's going up against thedistricts and fighting.
It does get tiring sometimes,and sometimes I have to shut it
off.
And I have to walk away and say,I need a breath from all of
(36:41):
this.
I need a minute from all of it.
I'm not the only parent.
I'm fortunate that in Caleb'sclassroom, I have befriended
several of the parents.
And when we had a big issueseveral years ago, we all came
together.
And there is power in numbers.
So if anybody takes anythingfrom this podcast, get to know a
couple parents.
In your special educationclassroom there are powers and
(37:02):
numbers and our lives are crazychaotic, but we worked it out.
We were able to manage to meet afew times went and presented to
our district over the issuesthat we were having and it
worked.
They don't like that we talk.
They don't like that the parentsall talk.
And then I'm lucky that I havesome other parents who their
children were saying you'reunified students.
They were not counting studentsand they've since they're in
their twenties now.
(37:22):
But they've been a good rolemodel for me and I've learned
from them and what they wantedfor their children and mistakes
that maybe they made and, and sothat's helped.
And although Sanger's big, it'ssmall.
So my husband's family has deeprooted here.
His grandmother graduated fromschool in Sanger.
I mean, they've been hereforever.
He, we know a lot of peoplebecause of that and I think that
(37:43):
makes a difference.
It should not.
It should not at all make adifference.
on how we decide to educate ourstudents with disabilities.
But for us, personally, it hasmade I believe it's made
somewhat of a difference.
One of the board members knowsmy father in law, and when we
were having some other issues,he popped onto campus one day,
you know, and he went intoCaleb's classroom, and all of a
(38:06):
sudden things start changingbecause of that.
So that's been part of theadvocacy and...
Several years ago, beforepandemic, I started going to
board meetings and presenting mymain thing was that classroom on
our campus at the high school.
I wanted it moved.
It was not moved.
They made some adjustments andbecause the campus, the school's
grown so much.
(38:26):
Now it's all part of the schoolbecause there's other classrooms
back there, but that wasn'tintentional.
That was because they didn'thave a choice.
But that's how I started goingto board meetings and you get
three to five minutes.
So I write out my topic and Iwould just try to talk to them
about different issues.
Knowing that they have no ideawhat's going on.
We have a new superintendent.
I think he knows a little bitmore about special education
(38:48):
than the last one.
So, I mean, I'm hoping it's abetter process, especially for
our younger students coming upthrough our system here in
Sanger.
But it's, again, you know, alearning process.
At times I felt very alone.
You know, my vision for my childis different maybe from the
other parents.
I remember I had a mom ask meone time about what's this
(39:08):
inclusion you're always talkingabout?
You know, what's this inclusion?
So I was explaining it and, and,you know, it's just, they don't
know, you know, if they're notgoing to trainings or they're
not, and then they're like, Oh,I like that idea, you know?
And I, so it just starts fromthere and just making it known
that I, you know, understand theIDEA and the IEP process and the
(39:32):
laws.
I think that's important.
I have a book.
Oh.
Have you seen this book?
I'll show it to you, but I knowit's not.
It's called the special, this iswhat I call my bible, Special
Education Law.
It's written by Wright's Law.
That was my first IB training Iattended.
I did have to pay for that toattend.
I wish I would have done thisbefore Caleb started the system.
(39:53):
Just amazing information.
I, this is all, you can see allthe tabs, tons of tabs.
It has all the laws andeverything in here.
And then I did, are you familiarwith the Brin Clinic?
Yeah, Jodi.
San Joaquin Law.
Yeah, so Jodi's, I did, I was inher first class.
That's where I got a lot of myadvocacy stuff from.
Amazing work that she's doing.
It's absolutely amazing workthere.
(40:14):
And that's, that's her wholepremise too behind that is,
inclusive education, even thoughher son's like Caleb's age, you
know, they're aging out.
It's still that inclusiveeducation and everything.
Yeah.
So, yeah.
What would you say has been likeyour biggest challenge as
Caleb's advocate over the years?
(40:35):
I think because you sometimes,you will sometimes form
friendships with staff,teachers, paraeducators.
But then when you have to holdthem accountable, that becomes
probably the biggest challenge.
Because you're like, wait aminute, I'm going to, I'm going
to step back and I'm going totalk to them first before and
(40:55):
see, can we get resolved thisway?
If it's not getting resolved,then I have to go on to the
director or the, you know, theschool psychs or.
You know, the coordinator of theprogram and all of that.
So that part's difficult.
Just, yeah, that's probably themost difficult part.
And then just being able to getwhat you're asking for because
we've asked for a line and we'venot gotten all of it.
(41:17):
Yeah.
Makes it difficult.
And draining.
It can be draining.
Mm hmm.
What do you do for yourself whenit's draining?
Like how do you, how do you workthrough that?
I'm pretty sure I was on fastforward most of Caleb's life.
In the last few years, I finallyrealized that I have to take
(41:37):
time for me.
I'm a better mom.
I'm a better advocate if I'mstepping away from it.
So I actually just started yoga,which is kind of crazy that I
did my first yoga class.
I've done three now.
So I started last week and Iwalk, I do power walking.
That's helped a lot.
Just.
And then separating myself fromit.
(41:58):
So, you know, if we're goingout, my husband and I, we're not
talking about what's going on.
You know, we're going out andwe're gonna have dinner and
we're gonna talk abouteverything else, but we're not
gonna talk about that.
Mm hmm.
And then I can always come backwith a fresh mind.
I don't do a lot of even Caleb'swork or advocacy work over the
weekends.
And Sundays I try, I've beenrecently now putting my phone
(42:18):
away, so I don't even have myphone on me just to say, okay, I
need to step away for a minuteand then Monday come back out at
full force, whatever is goingon, whether I'm back out at work
or I'm doing, you know, advocacystuff or working on Caleb's
stuff or Caleb's IEP.
Yeah, yeah.
What, like, words ofencouragement or wisdom would
(42:40):
you have for moms who are, Iguess, either dealing with...
With really stressful advocacyissues, or moms who are at the
very beginning of, you know,getting their child into the
system and, and trying tonavigate that?
Well, I mean, first of all, Iwould definitely, definitely
(43:03):
tell moms.
to educate yourself to learnspecial education law.
Now, locally, we have a lot ofopportunities.
We have the Bren Clinic, B R EN.
I think she's only acceptinglocal students into her clinic
now.
And I believe it's still onZoom.
So educate yourself, know thesystem, know your school
(43:23):
district.
Know what you want ahead of timebefore you go into the school
system, before your child goesinto the school system.
Know what you're looking forwhat your vision is for your
child.
Never sign anything.
Never ever sign anything.
Go home.
Get it out the next day and thenread through every single thing
(43:45):
on there.
I can't tell you how manyparents I've met over the years
who've signed paperwork, had noidea that they were signed,
didn't really read it.
And next thing you know, theirchild's in a completely
different school.
They didn't know that that'swhat they were signing.
That was my first advocacy caseout of Tulare Unified.
So that was an interesting caseto work.
Yeah.
And then just making friends andgetting to know other parents
(44:08):
who have children withdisabilities.
And.
Who are on campus with you,making friends with the gen ed
parents, making friends, likehaving that balance but there is
power in numbers.
There's by far power in numbers.
Yeah.
And then finding an advocate.
I think that's important.
The first few years of Caleb'seducation until I really could
grasp a lot, we had an advocatecome out with us.
(44:31):
The regional center will sitwith you on if your, your
child's regional center client,which ours is, we always have as
regional center.
Caseworker come out with usalways.
She don't say anything.
She just sits there.
But that's that extra person.
We had an advocate from EPU foryears come out and sit on IEPs
until, like I said, until I gota grasp where I'm like, okay, I
don't necessarily, an advocatecan change everything.
(44:53):
I just did a case last year andmom and I met.
We got it all ready.
She informed them.
She was having an advocate come.
I could speak for them becausesometimes they don't want you to
speak.
Sometimes they do.
We go into the meeting.
It's on Zoom.
Hour and a half.
Hang up.
Mom and I call each other.
What a debrief.
And mom says to me, Wow, I'venever had one of those meetings
(45:14):
last longer than 15 minutes.
Wow.
What a difference it makes whenyou plop an advocate into the
scenario.
Yeah.
So I was, I wasn't surprised.
Caleb's I think longest IEPmeeting was probably eight hours
or nine.
It was extended over three days,but that was probably his
longest IEP.
(45:35):
Our, our IEPs are typically two,three, four days, where they're
an hour.
Now they cut them down to anhour and a half.
So that's why I have multipledays of them.
If you've seen some of my posts,I don't sign anything and I
spend a significant amount oftime laying everything out and
reviewing everything from thelast IEP, the current one, what
was said actually.
I got the IEP.
(45:57):
They, they printed it out for meafter our last meeting.
I went through it and foundprobably seven different things.
They added that wasn'toriginally there from the
meeting.
Really?
Yep.
Wow.
Yeah.
Yeah.
So you kind of have, I don'tagree to everything either on
the IEP.
Sounds like you have to be verylike, you have to be on it.
You have to be on the ball forsure.
(46:19):
You do.
Yeah, you do.
You do.
And I guess too, like knowing.
Knowing the law, like you said,is important.
So like a lot of moms will belike, do I have to sign it?
How long do I have to sign it?
Or like I've heard situationswhere the school will come out
with the, with the IEP, likesign this, you know?
(46:39):
So yeah, I'm sure that's exactlywhat happens.
Yeah.
So knowing, knowing how long youhave and all those different
rules is.
It's huge.
Yeah.
It is.
It is huge because the districtwill use that to their
advantage.
They will use what the law isand especially knowing, you
know, most parents don't knowwhat the law is.
(46:59):
They don't have anunderstanding, not an
understanding.
They just don't realize there's,there is a lot there to protect
our kids.
And you know, I want to believethat a big chunk of people in
education want to be there forthe right reasons.
That they love our kids and theywant to include them and they
want to make this work is, is aninclusive education model going
(47:21):
to happen in my lifetime?
Probably not.
It's, it's a whole systemicissue, right?
It's a systemic problem.
It starts at our universities.
If you look at the Fresno StateCredential Program, they don't
educate teachers together.
They don't educate our K 12teachers with our special
education teachers.
It's a separate program.
(47:41):
Well, let's talk about whyaren't we working with them
together.
When I was in the credentialprogram myself, I had one class
for special education.
When I was in my master'sprogram and did the PPS, I had
one class in special education.
So, I mean, we're not, we're nottraining our future teachers.
To work with students who aredisabled, who are different and
(48:07):
to work cooperatively withspecial education.
So that that's a big problem.
It's not just Fresno State.
I mean, I'm sure the otherprograms run the same but that's
because that's our college here,our university.
So that's, you know, that's aproblem.
That is, that is a problem.
It begins there, but candistricts start making changes
now?
Of course they can, you know,they can work with universities
(48:27):
and.
You know, there's so much thatcan be done in this day and age
with technology, like there's,it's limitless, you know, it's
thinking outside the box justbecause we've always done it
this way, doesn't make it right.
Yeah, I think that was somethingthat Arielle said in that
podcast episode you mentioned isthat like, when she went to get
(48:48):
her degree, she automaticallydid the special education piece
also, even though she didn'tintend to use it or work in
special education.
Yeah, I'm sure that would behuge.
Yeah, it's definitely, I mean,we need to change.
And there is a difference, andyou may know this, but there is
(49:09):
a difference between inclusionand mainstreaming.
Caleb is mainstreamed.
A fully inclusive specialeducation student, disabled
student, would be on the rosterin every class would be part of
that classroom.
So Caleb is not fully included.
Part of his day is spent in aspecial day class.
I don't agree with that eitherbut that could be a whole nother
episode too about segregatedclassrooms and segregated
(49:31):
schools.
He is mainstreamed and we haveworked really hard and we are
very lucky we've been able tohave him mainstreamed in English
and history and even we triedmath one year.
In high school, he's doneyearbook.
Of course, pandemic set a lot ofthings back.
He does student government.
Caleb's the first student with adisability of his type of
(49:54):
disability that has ever beenable to do student government.
So, that was a big move.
Sixth grade camp, which is verycommon around here.
I didn't know anything about ituntil I actually had boys and
they went into school systems.
You know, it's kind of a rite ofpassage.
I'm going to guess, even as Isay this now, Caleb is the only
(50:16):
Fresno County student.
And the only student with histype of disabilities that was
able to attend sixth grade campwith his sixth grade class from
the middle school that he wasin.
And so that was a, you know, bigsignificance for him.
Something new, and I just wishwe could have this all around
that's happening in our highschool.
And I want to shout out aboutit.
(50:37):
They have, and it came from thePE teachers, Gen Ed PE teachers,
they want to do a friends withPE type of situation class, and
so they've developed this classfor Gen Ed students, and special
ed students will take a Gen EdPE class, and they'll be paired
up together like buddies.
For the class.
So that's going to start thisfall.
That's cool.
(50:57):
And that would be kind ofexciting to see.
Yeah, I think I love theinitiative.
I they're gearing it towards theteaching students because we do
have a pathway at our highschool for teachers.
And I love that.
I love That, and they hadalready been, when we had his
IEP meeting, the first class wasalready full.
Wow.
And students already did signup.
Yeah.
That's awesome.
(51:18):
Yeah.
So it's those type of changes,right?
Okay, so we did that for PE, butnow can we do it for maybe an
art class?
Or can we talk about doing itfor an English class?
You know, there's just differentways to kind of look at that.
Can we provide the rightsupports, the para educators
that we need?
Yeah, that'd be awesome.
And like you said, I think inthe beginnings, you know, it
(51:39):
doesn't just benefit thestudents.
It's, with the disability, itbenefits the students that get
an opportunity to learn fromthem, you know, cause there,
there are so many things tolearn from kids and students
with disabilities.
So it benefits everybody.
Yes.
Yeah.
(51:59):
Yes.
Well, thank you so much forjoining me today and having this
conversation.
I really appreciate it.
Well, thank you for inviting me.
I mean, I love to share ourjourney and Caleb's story as I
call it.
He's, you know, taught me a lotin life, just really opened our
(52:20):
eyes up as parents.
We see things so differentlynow.
But it, it's.
It's been a, it's been ajourney, but there's definitely
been some really good times onit.
And, and I love seeing himexcited, like our yearbook trip,
you know, he just was loving itand in heaven.
And it was exciting.
He loved the bus ride and justbeing included was so big for us
(52:40):
and we had no idea the teacherwas doing that.
Yeah.
We.
It wasn't until the IEP meeting.
Oh, by the way, Caleb in theyearbook, the trip, I was like,
what trip?
And so it's kind of exciting.
So yeah, I, I, I mean, if Ileave you with anything and your
listeners with anything, it'sdefinitely educate yourself
about special education law andfind some parents who are on
(53:01):
your campuses and get to knowthem.
And, You know, that's how we'regoing to start changing things
and going to school boardmeetings and breaking down these
barriers and these beliefs thatpeople have, you know, presuming
competence.
That's another thing.
Like, always presume competence,no matter what as a parent, as
an educator.
(53:21):
Definitely.
But thank you.
I do appreciate it.
It's my first podcast.
Yeah.
Thank you so much.
Yeah.
You did great.
Thank you.
Thank you.
Thank you so much for joining mefor another episode of rad mom
radio.
If you'd like to get in touchwith me, you can send me an
email.
My email address is rad momradio at gmail.
com.
You can also find me onInstagram at rad mom radio.
(53:44):
Hope you have a great week and Iwill talk to you soon.
Bye.
Popular Podcasts
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Special Summer Offer: Exclusively on Apple Podcasts, try our Dateline Premium subscription completely free for one month! With Dateline Premium, you get every episode ad-free plus exclusive bonus content.
The Breakfast Club
The World's Most Dangerous Morning Show, The Breakfast Club, With DJ Envy, Jess Hilarious, And Charlamagne Tha God!
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.