September 13, 2024 • 61 mins
Navigating the maze of autism diagnosis can be overwhelming and isolating. Today’s episode of "On the Spectrum with Sonia" features Nikki Shipp, the courageous host of Pieces for my Puzzle podcast, sharing her personal journey from the initial shock of her son Drayson's diagnosis to the joyous moment he first called her "mom." Nikki’s story is one of resilience and unwavering belief in her son's potential, a tale that resonates with many parents facing similar challenges. Together, we dissect the emotional highs and lows and the proactive steps Nikki and her husband took to secure the best care and support for Drayson.
This episode also sheds light on the often-hidden battles parents face within the school system. Nikki and I discuss the exhausting fight against systemic ignorance, where children with special needs are unjustly isolated from their peers. We emphasize the importance of peer modeling for social integration and emotional well-being, and how each small victory is a monumental step towards fostering a more compassionate and inclusive environment. Nikki’s candid reflections reveal a shared struggle and offer a sense of solidarity for other parents advocating for their children’s rights.
As we conclude, Nikki shares the transformative impact of finding the right educational setting for Drayson. From a boy who dreaded school to a child who now thrives in a supportive, nurturing environment, Drayson’s story exemplifies the power of belief and persistent advocacy. Nikki provides invaluable advice for parents on navigating the complexities of special education, the necessity of data-backed progress reports, and the role of a compassionate community. Tune in for a heartfelt episode filled with practical tips, inspiration, and a powerful reminder that every child has boundless potential waiting to be unlocked by those who believe in them.
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Episode Transcript
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Speaker 1 (00:02):
Hello everyone and welcome to today's episode of On
the Spectrum with Sonia.
We have a very special guesttoday joining us Nikki Shipp.
She is the podcast owner ofPieces for my Puzzle podcast,
which I had the lovely privilegeof being a guest on, which I
(00:23):
had the lovely privilege ofbeing a guest on.
On the Spectrum with Sonia is apodcast designed to discuss
autism spectrum, mental healthchallenges and anybody who's
overcome any challenge.
That is inspirational andleaves people feeling filled
with hope, connection, love,support and empowered.
(00:45):
So today, let's please join mein welcoming Nikki to our show.
Nikki welcome.
Thank you so much for coming onhere this morning.
Speaker 2 (00:55):
Hi Sonia, Thank you so much for having me.
I'm very excited to be heretoday.
Speaker 1 (01:00):
I'm excited to have you.
Speaker 2 (01:02):
So tell us a little bit about yourself and how
autism got introduced into yourlife years ago because I was
(01:28):
introduced with about autism, Ishould say because my son was
diagnosed at the age of three,just after the age of three.
So I didn't know much aboutautism prior to that.
I'd always heard about you know, quote unquote autism, but I
didn't really know what it wasand so I didn't.
You know, jason wasson was myfirst biological child and I
didn't necessarily know orunderstand that maybe
(01:50):
developmentally he was behind incertain areas.
So, um, I noticed he wasn'tspeaking much and that was the
biggest thing for me.
Um, so we did have a wonderfulpediatrician that um, one day,
at one of his wellness exams,saw Drayson stemming, flapping
his hands, and so she referredus to a developmental
pediatrician and we were veryfortunate and blessed as well to
(02:15):
have another wonderfulphysician with us to help us
with Drayson's care.
But basically we found out thatDrayson had autism at the age
of three.
But basically we found out thatDrayson was had autism at the
age of three and that put myhusband and I both in kind of a
tailspin, I think, you know,it's really common for a lot of
families to feel that way, whenyou receive a diagnosis and you
know nothing about it and you'renot sure what to do and you
(02:38):
know they hand you this list ofthings to do and say, okay, you
know, come back in six monthsand let us know how you're doing
, kind of thing.
So that's, that's how we gotthrown into the world of autism
and and it was.
It was a little daunting atfirst.
You know, our developmentalpediatrician was fantastic, is
fantastic, but she just was alsovery real.
(02:59):
Like he might speak, he mightnot ever speak, he might call
you mom, he might not call youmom, and that was really
devastating for me personally.
So I had a little bit of agrieving period, and when I say
grieving, not because I lost allhope or anything, it's just the
idea of what I thought my soncould become or the picture that
(03:22):
the expectation I almost put inmy head was there.
I had to completely dispelmyself from that and to realize
that he just learns differently,he might communicate
differently.
Everything that I thought wasgoing to be quote unquote normal
was now not going to be normal.
So after my grieving period ofthat and kind of letting go, I
(03:44):
really delved into what type ofcare he would need, what type of
resources I could find I kindof became that squeaky wheel of
a mom and you know, excuse measked a ton of questions, wasn't
afraid to ask questions.
I probably got a bad rap atsome places because I was almost
maybe probably too intrusive,to be honest with you, but I
(04:06):
wanted to get that care for myson and um, and so we were very
lucky.
We put him into preschool, um atthe age of three and a half and
um his preschool teacher had amaster's with special needs, in
special needs education with anemphasis in autism.
So she was a great mentor to meand taught me quite a few
(04:27):
things about, in terms ofeducationally, what I could do
for Drayson and questions Icould ask.
So I was very fortunate to comeacross that it still didn't
inhibit moving like later on.
It didn't inhibit some of theproblems that we had at his
school.
But it was very, very difficultin the beginning for us to even
(04:52):
find services and I think ittook me almost a full year to
qualify him, have him becomeeligible for services and then
to find the care providers toprovide care for him.
So, fast forward, a year later,we finally got things
implemented for him.
We started to see progress.
I was happy to announce.
About six months after hisdiagnosis, he called me mom for
(05:13):
the first time.
So I knew, I knew in thatmoment that he was capable.
The first time I ever heard himcall me mom and um.
And that's actually a reallyfabulous story, because I was
headed to his daycare to pickhim up and I didn't realize that
, I didn't realize that my ownchild was calling my name.
(05:35):
I heard some kid in thebackground yelling mom and I
thought it was some other kid,you know like, where's this
kid's mom?
And I realized it was him.
He saw me walk past the roomand he was coming after me and I
remember feeling very hopeful,like I realized in that moment
oh my gosh, he's, he is capableand he's going to be able to do
(05:55):
these things.
So that's where my moment ofbelief started for Jason, about
six months after his diagnosis.
That's when I really started tounderstand that he was capable.
I just had to find a differentway to expose him so that it
worked with his learningcapabilities, so that he could
(06:15):
then, you know, have a voice ortry to communicate in some
fashion, even if it wasn't goingto be vocal.
How was I going to get him tocommunicate more with us.
So in the beginning things weregreat.
We had a lot of supportiveeducators.
It wasn't until he was insecond or third grade we really
kind of started having problems,which, educationally, sometimes
that's a pivotal point incurriculum, right they kind of
(06:38):
start laying on a little bitmore heavier curriculum with the
kids and that's when we reallystarted having problems.
Was was first, second, thirdgrade.
We really started seeing thatthe support wasn't what we
thought it was going to be.
And and also the when I saysupport, I'm not just talking
about educationally supporting achild, I'm talking about the
(07:02):
social, emotional component.
Speaker 1 (07:04):
Sure, and you know, and before we go more into that,
I was just, I would like tohear from you just the fact that
you were at one point toldright, yes, yes, your kid might
not ever speak to you, he maynever call you mom, you may
never ever say I love you, oranything like that.
Right To finally hear you begetting called mom.
(07:25):
Six, months after the diagnosisjust walk me through what.
What did that feel like for youLike?
Speaker 2 (07:30):
walk me through what was going on.
Oh my gosh, I you know I had somany waves of emotion.
First of all, I criedhysterically.
I got in the car and I calledmy husband because I couldn't
even believe that he called memom.
And it was so, it was soinnocent.
I was walking past the room togo get, to go pick them up and I
didn't realize they'd movedinto a different room.
So he saw me walk across thewindow.
(07:52):
The lady, the aid, was tryingto tell him to stop and he ended
up grabbing her by the hand anddragging this woman out of the
doorway into the hallway to getmy attention and I could hear
this mom, mom, mama, mama.
And I'm like somebody find thatkid's mom.
(08:14):
And I turned around like whatis the problem?
And I was like literallymid-sentence in my you know,
like what is going on kind ofthing is what I was saying.
And I turned around and it washim.
I immediately got teary-eyed.
I looked at the aid and I saidI'm so sorry.
And she kind of looked at melike and I literally said to her
(08:34):
I said he's never called me mombefore.
Speaker 1 (08:36):
Oh, my God.
Speaker 2 (08:38):
So she started to break out into tears.
I got into the car.
I was hysterically crying.
My husband thought I got into acar accident.
I was crying so bad.
And um, and I remember gettinghome and hugging Dresen and
telling him that I loved hearinghim call me mom.
(08:59):
I told him.
I said I love hearing yourvoice.
I said I love hearing yourvoice.
I said, son, I am, I love thatyou called me mom.
Thank you.
I wanted him to know that.
I wanted him to also feelencouraged to continue to speak
Right.
So I wanted him to know howmuch I loved hearing his voice.
I felt a sense of guilt for amoment too, because I didn't
(09:20):
recognize his voice.
So when I realized it was myson, I also almost felt a moment
of guilt because I didn't evenrealize it was him.
And after that, everything else, everything else that we've
been through, that's beenextremely difficult.
I always go back and remindmyself of that moment, always.
Speaker 1 (09:41):
And it's so.
You know, this makes me want tocry, actually, because it's so
emotional.
Like I could feel the emotion.
I feel like I was just therewith you.
I feel like you know what I wasin that hallway with you, as
you were sharing that.
I feel like, oh my goodness,and just I can only imagine just
the shock and just the you knowthe, the pride you must have
(10:03):
felt in it, and just the shockand just the you know the, the
pride you must've felt in it,and just the idea, just that
whole idea of, oh my gosh, youknow, he's defied the odds,
despite what the doctor said, hemight not ever speak to me.
Oh my gosh, he's speaking to mefinally, yay.
Speaker 2 (10:19):
Yeah, and I think that that was my I always call
it my moment of belief.
That was my moment of beliefand I think that every parent
has that with their child and itwas the choice of what do I do
with that.
I wanted to keep going.
I was like let's do this, likeI want to explore this now
because I'm seeing that he'scapable.
(10:40):
And if I had just gone intothat state of, well, she said he
may or may not.
Speaker 1 (10:50):
I guess he's not going to and I settled for that.
Then where would he be today,right, right?
So so we're going to be fastforwarding.
Now he's in first, second,third, we're in early elementary
school.
Now you had started to say thatthe emotional and social
support wasn't what you thoughtit would be Right, it was very
antithetical to what you hadexperienced in the preschool
(11:11):
years.
Yes, yes, what changed?
Speaker 2 (11:18):
Well, we had moved to a different school.
That had changed.
We had moved out of where wecurrently were living and into a
different school district.
And here in the state ofArizona you can't.
There's no boundary exemption.
If you have a special needschild who has an IEP, you have
to stay within the district ofwhere that IEP goes to.
So we knew we wouldn't be ableto commute him to the school
(11:39):
that where he was currentlyexisting, where he was currently
existing.
We had heard great things aboutthe school.
We vetted the area we weremoving to.
I did my research, I did myhomework.
Like on paper it all lookedfantastic.
You know, initially, in thebeginning, kindergarten went
(12:00):
well, but it was as he got intofirst, second and third grade I
just started to see some thingswithin the system that that it
was just, for lack of betterwords, a broken system.
It wasn't just the educationalcomponent that I felt like he
wasn't being supported on, butthe social, emotional component,
which is a really big deal forkids.
(12:21):
You know, sometimes I thinkthat's even a bigger deal than
some of the curriculum that wehave to that we put our kids
through.
But it changed with theeducators and I felt for them in
the sense of I could see wheretheir resources were limited.
There was limitations for theseeducators, so I could see that
(12:42):
frustration for them.
There was limitations for theseeducators, so I could see that
frustration for them.
But I also the administrationwas horrible in delegating the
type of care that Drayson reallyneeded under a special needs
category.
But I started noticing things.
Like you know, we'd makespecial accommodations for
(13:04):
Drayson.
He had an aide with him all thetime, so we were able to get an
aide that would sit with him toassist him with tasks and doing
things at school.
I found out that they, you know, in the morning he would walk
into the gate and he'd gotowards his classroom.
I thought he was going to standin line and lo and behold, I
found out that they would.
The aide wouldn't allow him tostand in line and lo and behold,
(13:25):
I found out that they would.
The aid wouldn't allow him tostand in line.
She was being told to take himto the library and make him sit
by himself and I didn't know ifthere was a behavioral issue
going on.
Was it sensory?
Was he overwhelmed Like?
And then I started to noticethat he at school pickup.
(13:46):
They were asking us to go tothe front office and not to the
school pickup line, and, um, Ididn't understand why that was
happening either.
So when I started askingquestions, they you know, they
sent me an email saying we justfeel like it's better for
Drayson.
And so when I I started askingquestions well, is there a
(14:08):
behavioral issue or is he actingout?
Because, if so, I want to knowso that we can work on that with
my home care team, cause I hada, I have a team of home care
providers that help us, so Iwanted to maybe devise a goal to
help with that if that was thecase.
And they said, no, everything'sfine, drayson's great.
We love Drayson.
He's such a sweet boy.
(14:29):
And I thought to myself why arethey removing him from his peers
?
And you know, they startedtelling.
They finally came out that itwasn't for Drayson.
It was because the, the aid hadto clock out by a certain time
and it was just easier for themto move him.
It was just easier for them totake him to the library and sit
by himself before he went to theclassroom, and so I had to
(14:52):
literally advocate for him to beable to stand in line with his
peers, because I had to explainto them that the peer modeling
watching his peers socialize,observing that, being around,
that was important for himbecause of his social behaviors
(15:14):
and not knowing you know, tryingto learn how to integrate there
was no peer modeling happening.
They were just putting him intoisolation.
Speaker 1 (15:22):
That is so heartbreaking and
heart-wrenching.
It's like it seemed like theydidn't really, they were just
doing the path of leastresistance because they wanted
to do things that wereconvenient for them.
Notwithstanding the fact thatyou know and going to your point
earlier, you know just thewhole social emotional piece of
going to school.
(15:42):
Right, that's huge, because ifyou're not in a good environment
, it doesn't matter how good theeducation system is.
If you're not in a good socialemotional environment where you
can thrive, it only makes theacademics that much more
difficult and challenging, in myopinion.
Speaker 2 (16:00):
Well, yeah, and I even said to them just because
he can't communicate to you howhe's feeling right now does not
mean that he doesn't communicateto you.
How he's feeling right now doesnot mean that he doesn't have a
feeling over this.
You know, you don't.
You are automatically givinghim the belief that he's
different from everybody elsebecause you're isolating him and
standing 10 minutes in themorning in line with his peers
(16:20):
and 10 minutes at the end of theday in line with his peers is
20 minutes a day of peermodeling time times five times a
week.
When you, when you just if youquantify it and that's what I
ended up telling theadministration when you quantify
those minutes of peer modelingthat you're taking away from him
(16:40):
, you are putting him furtherand further away from socially
trying to integrate with people,right, and that was very
upsetting to me.
Speaker 1 (16:53):
I can only imagine the pain that you must have felt
, just having to witnesseverything you know, having to
fight with the school systemthat had no little to no
understanding, if any, you know,and even saying little
understanding is being generoushere, you know, you're having to
(17:13):
advocate for your child, who'shurting yeah, because he's being
treated like he's some kind oflike prisoner for all practical
purposes, right, it just seems.
It's just so heartbreaking, andyou know the fact that you're
sharing the story.
I wonder how many more parentsshare what they had like
(17:38):
something similar to whathappened to your son.
What I remember when I told youwhen I was a guest on your
podcast, you know about some ofthe incidents that I went
through and and my parents dolisten to my podcast, and so I
think when they hear whathappened to your son, I think I
know, I know they will get aflashback of what they went
(18:00):
through with me, even becauseyou know it just.
It's just the fact that, firstand foremost, you know it just
shows the power of ignorance.
Ignorance and power of lazinesson top of that, right.
Speaker 2 (18:16):
Well, and it's just, and you know, based on all the
conversations you and I have had, sonia, you you'll know as well
as I do this.
What I'm describing right nowis just one of several types of
incidents that we had to dealwith with with Jason.
I mean even down to theprogress reports.
Like the progress reports I wasreceiving, they would tell me,
oh, you know, he's met 30% ofthis goal.
(18:38):
So when I would ask to see thedata to understand how they were
articulating that he had madeprogress on 30% of the school,
they weren't providing datapoints to me and I couldn't
understand where they weregetting his progress.
And oh, he's not reallyprogressing here.
But oh my gosh, here he at 60%.
I'm like okay, but it doesn'tseem like he's progressing or
(19:00):
advancing.
So what's going on here?
And when I started askingquestions about that, we kind of
entered another stage of um ofof a huge debacle, basically
that I found out that they werenot, basically they were not
taking data to support what theywere telling me on the progress
(19:21):
boards.
Because when I finally askedfor the files, they said we
can't give you a file.
We can't give you a filebecause there is no data to
support there is no data in hisfile and said over a two-year
(19:49):
time span that they had missed786 service hours because they
didn't have data to support anyof it.
So they had been giving meprogress reports for two years
with no data to support wherethey were getting those numbers
from.
Wow, that's just flabbergastedyeah it was and that's when I
always call it my mama bearinternal rage moment really
(20:13):
happened and, like you weresaying, how many other parents
has this happened to?
We ended up transferringDrayson and finding a school
that was much better suited forhim.
Suited for him and, um, and Iremember saying, after we went
through that whole ordeal withthat school, I said to my
(20:33):
husband how many other parentsand families is this happening
to that?
We cannot.
You know that that the amountof frustration because it's not
just it's not just the logisticsthat you're putting up with,
you're dealing with your ownemotions I was, I was pissed, I
was upset, I was sad, I wasworried for my son, um, my
(20:54):
anxiety went through the roof.
I mean, it was almost like Ifelt like I was developing a
form of PTSD, because every timeI would get a progress report
or I get a call from the school,I would trigger Sure.
And so, get a call from theschool, I would trigger Sure,
and so I think that was thebiggest thing for me personally,
and that's how I ended upstarting the podcast, because I
(21:15):
said to my husband how manyother families is this happening
to?
This Can't, this can't go onlike this and we have to know
how to advocate for our childrenand to be able to speak on
their behalf, and that takes alot of courage and it takes a
lot of strength to do that.
Speaker 1 (21:33):
It does, it does and you know it.
It just makes it so much morearduous when, there, you feel
like you're basically travelingin this maze where you're kind
of blindfolded, whereaseverybody else has these, you
know, are fully able to see andhear and everything, but it's
(21:57):
like you can't even see well andyou're getting at all at all
because you're blindfolded andyou're just going into hedge
after hedge after hedge in amaze, whereas everybody else is
finding pathways everybody elsehas access to, perhaps maybe
throw some breadcrumbs, you know, to find their way out.
It's just so, um, I just canonly imagine how lonely this
(22:20):
must have felt for you as well.
You know it just felt, you know, for you to have to go through
this, and you know, and I hearyou talk about like you know, it
just felt, you know, for you tohave to go through this, and
you know, and I hear you talkabout, like you know, of course
you know, part of being inspecial ed is it's for people
who have a different way oflearning right and they learn
differently, right.
It's not that they're any lessintelligent or anything like
(22:40):
that.
And you know there aredifferent types of special ed
programs but, um, and you knowthere are different types of
special ed programs but you knowthe you know.
So you had certain progressgoals.
You know that was supposed tohave been met by the team.
What were some of the goalsthat you were hoping to have
Drayson achieve with those goalsin those meetings?
Speaker 2 (23:03):
You know it's funny because the way that the IEPs
here are broken down are.
You know it's funny because theway that the the IEPs here are
broken down, or you know, bycategory.
So of course he had, like hisreading, his math, his
comprehension, um, one of thethings that I couldn't
understand was the comprehensionpiece, because he didn't seem
like he was still comprehendingthings very well.
And, um, at the time and I wasvery blessed, I had a, I had a
(23:26):
team of advocates, I did, I hada company that two women that
were very, very pivotal inhelping me.
They were, they were advocatesand they helped coach me and and
even advocated for me in thatroom.
But some of the goals werewritten as such that we, you
know, I kept saying I thinkthere's something more going on
(23:47):
with his comprehension.
Oh no, he's fine, I'm like, andthe advocate said do you know,
have you considered he might bedyslexic?
And the school said oh no, hereads just fine.
And I said it's not justreading.
There's more to dyslexia thanjust being able to verbally read
a page.
He's not answering, he's notseeming to recall immediately.
(24:09):
So we read a simple paragraphand he couldn't recall who, who
in the story and I was likesomething's going on.
So we ended up pushing him tohave him tested and they didn't
want to test him.
They denied the test.
So I requested an independentevaluation, which I don't know
if a lot of parents know this,but you have the right to
requested an independentevaluation, which I don't know
if a lot of parents know this,but you have the right to
request an independentevaluation If you are not
(24:32):
satisfied with the evaluationthat the school has done, sure,
or if they don't want to.
So I ended up going straight todistrict and I requested an
independent evaluation.
And, lo and behold, after hisassessments it came back that he
not only was dyslexic, but hehad dyscalculia and dysgraphia.
I am not the educator, okay.
(24:54):
What upset me was that how comenobody was open to the idea of
that?
If you know within yourprofession what some of these
things might look like, I haveto.
That was a level of trust that Ihad to try to have and I
couldn't have it anymore withinthem.
Wow, you know.
(25:16):
So they would tell me oh, youknow, he's not doing really well
with comprehension, but he'sgetting there.
He increased by 10%.
He wasn't increasing at all, hewasn't advancing at all because
they weren't ever assessing it.
Social emotional goals werewritten in there and his social
emotional goal was really lowtoo.
Well, when I found out thatthey were pulling him out of a
line and not allowing him to bearound his peers, or letting him
(25:39):
go doing something else atrecess and not kicking him
outside with the rest of themright and trying to to put some
things in place to allow him tobe socially integrated, um, he
wasn't hitting the goal onsocial emotional either.
Speaker 1 (25:53):
Right, you know, and I just feel like that's such a
travesty in the field ofeducation that you have these
people who are supposed to knowa little better and who are
supposed to at least you know.
You know if they're red flags,that you know, maybe there's
(26:14):
some things that need to beevaluated.
If you know a person is havingtrouble, you know, with reading
comprehension, a person wealready know is on the autism
spectrum, Is there maybe perhapsanother contributing problem to
this too?
Because you know it's so?
It just, it's just a travestythat these, it just seems like
(26:35):
those people didn't want to doanything.
It seems like they they'drather just sit and be lazy.
It's, it just seems to me.
And what you're telling me andI don't.
Speaker 2 (26:43):
I don't necessarily blame the educators, I think
what's?
Because I see both sides ofthat.
They are limited in theirresources.
They've got 30 kids in aclassroom, they've got, you know
, all these things.
And then they have to deal withalso what the administration is
telling them.
And you know, I taught in highereducation for a better half of
a decade, so I understand thethe kind of the behind the
(27:03):
scenes dynamic of what happens.
You know, from a performancestandpoint, schools have to
produce numbers, they have toproduce results, they have to do
all this stuff.
So if it looks good on paperfor them, that's what they're
gonna try to maintain.
And districts andadministration higher level
administration is alwaysbarreling down on educational
teams about what they can andcannot do.
(27:25):
So it's like I was fully awareof that.
But I think I was just more ina state of shock that, as I was
actively coming to those higherups, to that administration, to
district, the amount of pushbackthat I was receiving, that's
when I had my breaking point andthat's when I realized that he
would never be successful atthat school because it would be
(27:46):
a constant fight.
They would constantly, theywere constantly going to combat
me with his goals and and not doright by him.
So I made a decision to vetother schools and I transferred
him out.
Speaker 1 (28:01):
You know, and then I was a process like for you to
transfer him out of the schooldistrict and into another one.
That was hard.
Speaker 2 (28:08):
It was very difficult .
First of all, we had to qualifyfor some scholarship dollars
because to go to a privateinstitution was going to be
costly.
We're very lucky here inArizona we have some wonderful,
wonderful schools that arespecifically for kids who have
autism.
(28:28):
But what I realized, evenwithin that realm, was that
there were certain schools thatwouldn't take Drayson because he
was too much of an advancedcase.
So I had to also field therange of autism schools just to
find the school for him range ofautism schools, just to find
the school for him.
And I we'd already beenrejected.
(28:49):
We got rejected, um, I think,three or four other times on
applications and I remember theschool where he's at now.
When we interviewed I realizedthat that was going to be the
school for him, because thedirector of that school asked me
a very important question rightoff the bat when I met her.
And that was what would you likefor me to know about your son?
(29:12):
And she said that I was sotaken aback I literally got
really teary eyed.
I think I almost started to crya little bit because I said to
her my son is a wonderfullysweet boy who is poorly
misunderstood, and it still.
(29:32):
It still makes me emotional,sonia, because no one had ever
bothered to ask me that and um,and that really hit me hard and
I remember getting off thatinterview with her just saying,
please, god, let him end up inthis school.
Like I know this would be sucha good school for him because of
the level I mean we're talking.
A director of a school coming tome and saying, what would you
(29:54):
like for me to know about yourson?
I mean it was just an amazingthing.
So we were lucky he ended upgetting in and he's been.
He just entered his fourth yearat the, at the Autism Academy
here in Arizona and I could notbe more pleased and more proud
of that institution, of thatorganization, as well as as my
(30:16):
son.
But it took us years to find Imean years for us to find that
home for him.
Speaker 1 (30:24):
You know, I'm so happy you were able to find
something for him.
And when you talk about hisjourney in education, now being
at the school he's at, he's beenthere for four years Um, what
do you notice?
Like, what do you see differentnow?
Like, how do you see a change?
Like what have you noticed?
Just transformation.
Speaker 2 (30:46):
He he's happier, he doesn't seem so anxious.
Um, you know he was enteringhigh levels of anxiety, um, at
this other school.
I mean, he would cry every daygoing to school and I would cry
after I would drop him offbecause I would feel so bad that
(31:06):
I left him crying.
Um, and you know, I realizedsometimes it's a detachment
thing, like I don't want toleave my mom.
But this wasn't it, it wassomething else and I knew it.
Now, I mean, he gets upset whenhe doesn't go to school.
Um, now he, you know, even withthrough summer break, we had to
(31:27):
do a countdown for when schoolwould start and he would, you
know, I think, like the weekbefore school.
I said you have one week and hewas like, yes, school, like you
know, actively excited.
I didn't realize until this lastopen house that we just
attended for for the new schoolyear.
I didn't know that he waspopular.
I mean, all these kids weresaying hi to him in the hallway
(31:50):
and he was saying hi back.
I didn't know that he wouldreciprocate like that to see him
saying hi to kids or oh hi, youknow he would.
Oh hi, peyton.
Oh hi, you know, you know.
Oh hi, tim, like he's.
He's such he's blossoming in hisown way.
It might still not be the mostideal version of what society
(32:11):
thinks that is, but he's doingit, you know, and I'm asking
like little open-ended questions.
You know, like the other day Iran into, like the bed and I
stubbed my toe and I was like ow, and he's like, oh my gosh, are
you okay?
And I was like I'm fine.
He's like did you hit your toe?
I'm like I did hit my toe.
Like little things like thatnever happened, even up until,
(32:36):
you know, two, three years ago.
And we started to notice that hewas more relaxed, he was calmer
, he was happier and andeveryone there is super
supportive.
I mean, the culture iscompletely different there and
that's what I needed for him,you know.
And he seems more playful in alot of ways too, in his own way.
(32:57):
Sometimes you don't see itemotionally, you might not see
it, but he also reciprocates.
You know, if I put my hand out,he'll hold my hand.
If I ask him if I can have ahug, he'll hug me.
All of these things weren'thappening four years ago, you
know, and I think it's becausehe was displaced and he felt
displaced and he felt, um, youknow, he didn't feel supported
(33:23):
and and he doesn't, and and I'mstill his voice.
He's 12 years old now.
He'll be 13 in February, sowe're getting ready to go
through preteens.
I'm so excited for that.
But you know, now I know I canspeak to him and he understands
what I'm saying you know whichwhich has before he was so
closed off and shut down, whichis before he was so closed off
(33:47):
and shut down.
And I think sometimes we don'trealize as adults how
influential we are with anychild, not just autism or not
any child, how we influencechildren.
I don't think that sometimes werealize in such a way of how we
can sway that for a child andcreate a really positive
(34:08):
experience if we want to.
Speaker 1 (34:11):
Absolutely.
You know and it seems like youknow you've done a lot of work
here and it's commendable allthe research you've done, all
the help you sought.
You know getting the advocates,getting the special education
attorney to help out.
You know doing all what youknow getting the advocates,
getting the special educationattorney to help out.
You know doing all what youknow investigating other schools
(34:32):
.
You know using also yourmotherly instincts as well,
right to you know really propelforward and push Drayson forward
.
And you know the way youdescribe Dray Jason.
Now I can even tell just by howyou speak about it.
It's like night and day.
(34:52):
It seems like two differentpeople.
Speaker 2 (34:56):
And people who haven't seen him in a while will
say that, oh my gosh, he isdoing so well.
Oh my gosh, like I can'tbelieve that he, you know, said
hello or, you know, said goodbye, or gave me a high five or you
know, just anything like.
Even people that haven't seenhim in a while have noticed the
difference.
And that's when I realized, youknow, I realized that it's just
(35:20):
more moments of belief for me,right?
I feel like every day now I'mentering more moments of belief
than I am being worried orscared about his potential, and
it just makes me want to keepgoing forward more, you know,
and Drayson's school experiencewas one battle, but we had our
own battle, even with the statehere, to get him services.
He was denied programs.
I had to write, write appealsand petitions and and I tell
(35:43):
people all the time that, yeah,it's exhausting and it's a fight
, um, and you have to keepyourself centered and you have
to keep yourself in a in a waythat you can still be you,
because you do feel like you'relosing yourself a little bit
when you start going through allthis.
I mean, I remember walking outof a lot of the meetings at
Drayson school, going.
Everyone's telling me this, amI crazy?
(36:06):
And that's where you reallyhave to tap into your
self-belief and your intuition.
And I tell parents that all thetime.
Two things don't underestimateyour children and a whole always
hold belief that they'recapable, and the other is hold
the belief that you're capableand always trust your intuition.
Speaker 1 (36:34):
Those are the things I always tell parents, you know,
is that you have to hold beliefand you have to trust your
intuition Absolutely.
You know you can't just and it'sso important that because the
way I look at it is you know youare the number one advocate for
your child and you're the onlyone, a lot of times, most often,
that can make the differenceand anything you do, everything
(36:54):
you do, everything you say,makes a difference, you know.
And if it's, you know and itmakes me emotional how to think
about this, but you know, Ihonestly feel, because I'm on
the spectrum, as you know, and Ihonestly feel like, if it
wasn't for having a strongmother figure, you know, who
(37:15):
believed in me and believed inmy education, um, I had a
teacher, um, a fourth gradeteacher who ended up becoming my
tutor starting in fifth grade,and if it wasn't for her seeing
my potential, you know it's ittook a lot.
But I also feel like, you know,because the school, when they,
(37:36):
when I was younger, they told myparents Sonia would be lucky to
make it to eighth grade or getto high school and I was to be
anything, you know, if anything,I think they thought I'd just
end up in an institution orrelegated and you know, but to
surpass what everyone said thatI couldn't have achieved.
You know, that's a feeling thatit's hard to even put in words
(38:04):
at times.
The feeling of that, andknowing a lot of it, is because
you had strong people in yourlife that believed in you.
Yeah, yeah.
Speaker 2 (38:14):
And I think that's one thing overall I feel like I
realized was really lacking,that I never knew.
I didn't know that belief waslacking so much within society.
Like I was talking about thatmoment of belief, I wanted
everyone to believe the way thatI do about my son.
I want everyone to believe thatchildren are capable to do
(38:38):
these things.
Without bringing mypreconceived notions, all of my
preexisting know how I wasbrought up, all of that.
I had to put that all out thewindow.
I had to basically clear theslate and find a new way of
belief and that's.
(38:58):
You know, that's a really hardthing to do, but if you don't
understand, if you don't seethat as a core, fundamental,
then it will be even harder.
It will be even harder.
It will be even harder to findthose resources or to go.
Why am I even doing this?
You know he's not.
They said he's not going totalk anyway.
Why am I going to even do this?
You know, and that's that's amindset, and I, you know, and
(39:22):
here's the thing is, you know,and I tell Jason this all the
time I'm like son, you arecapable of anything you want to
do, and I and I told him when hewas born before I even knew he
had autism, that he was meantfor greatness, and I still tell
him that today.
And he needs me to believe inhim so that he can go on and
(39:43):
believe in himself, because whenwe're young, when we're kids,
we don't know what that means,we don't know that.
We, you know, we don'tunderstand that.
So I have to be the mentor tocultivate that for him.
You know, and I think thatthat's so, so important and
there's so many wonderful careproviders out there that do
(40:04):
amazing things for our kids whoare on the spectrum, and I think
that they're just those addedmentors that we need in our
lives to help support, you know,and I wish there was more of it
out there, just societallyanyway, not just for autism, but
just in general.
It would be nice if we all werea little bit more like that.
(40:24):
But you know, at least that'smy solution for changing the
world.
I guess I don't know.
I'm just kidding.
Speaker 1 (40:32):
Oh my gosh, your story is so amazing.
I feel like we need you towrite your story.
We really do.
Your book needs to come out too, of course.
You know you and I know somegreat people who could help out
with that.
But I think you know that yourstory is so inspiring, so
(40:55):
powerful.
What are some of the things,though, that you've noticed,
like, what are some of thebiggest achievements thus far
that you've seen for drayson,where you felt, maybe before
you're like, oh my gosh, is thisever going to happen?
Is this ever going to happen,apart from him at six months
later calling you mom?
(41:16):
Right, what have you seen thebiggest achievements thus far in
this new school and this thathe's been in now for four years?
Like what?
What are some achievements thatyou even were like, oh my, my
gosh.
Speaker 2 (41:28):
Yeah, the, the, the reading and the comprehension,
the knowledge that he's intaking cause, even though he's
not verbal all the time like he,he speaks, and still in
fragmented, fragmented sentences.
So he doesn't necessarily.
It's not like I can sit withJason and have a full back and
forth conversation with them,but like simple example, the
other day the television was on,it was some documentary and
(41:51):
there was a picture of theStatue of Liberty on there and
he walked in the room and saidthat's the Statue of Liberty?
And I was like, do you know theStatue of Liberty?
And he goes, yeah, and myhusband said, well, where's the
Statue of Liberty, where is theStatue of Liberty?
And he goes, yeah, and myhusband said, well, where's the
Statue of Liberty, where is theStatue of Liberty?
And he says in New York.
And we were both like, okay, soclearly he's retaining
(42:12):
information and we didn'trealize that he even knew some
of this stuff and so just littlethings like that.
We're noticing he has culinaryclasses at this school, so he's
trying new foods, so he willcome home and and he gets kind
of a little, you know, he canhave something extra if he's
tried a food that he doesn'treally like you know him even
(42:36):
being open to doing that.
Um, because they've created anenvironment for him at school
where you know he doesn't feelanxious, he doesn't feel nervous
, he doesn't feel scared, and sowe've noticed that he's trying
new foods.
Um, he came home the other dayand told me he he, he tried a
lemon roasted potatoes and Isaid oh, did you like those?
(42:56):
He goes yeah, and I said wouldyou like me to make them
sometime?
He goes no, thanks, okay, well,you know so.
I mean he tried it.
So we're noticing that.
The biggest thing for me is thesocial connection, which I know
is not academic based, but it'sbeen amazing.
(43:18):
We had some company over a fewweeks ago recently, and they
brought their daughter and heactually went outside to go play
and we had like three or fourlittle kids here and he went and
put on his swim trunks andended up jumping in the pool
with them and we couldn'tbelieve it, because that's not a
(43:38):
normal initiation for Jason.
Wow.
So we're seeing him start to tryto initiate, just even being in
the same social circle, and hekind of laterally played.
He played a little bit, he theywere jumping off of the deep
end, so he kept saying look atme, and they were taking turns
jumping off the diving board andI just remember thinking he's
(44:00):
asking for their validation.
You know he's hey guys, my turn, okay, now you go.
And I was just like, oh my gosh, he's initiating, he's engaging
, um, and these kids were.
So the kids were beautiful,they were wonderful, you know,
and, yeah, heartwarming story,yeah, heartwarming story.
Speaker 1 (44:21):
So you know it just puts a big smile.
You know I can't just have thebiggest smile on my face just
listening to this and seeing.
You know that you know thingsare moving along.
You know, you know things areheading in a good direction for
him and you know he, he soundslike he's actually even getting
more confident too, withinhimself, his ability, as well,
(44:44):
as you tell his story.
Speaker 2 (44:48):
Yeah, he's almost, I think, getting a little too
confident, but I'm okay with it.
Like I said to him the otherday, I said you look so handsome
, I know.
Oh, okay, I don't.
I said, you know you'rehandsome?
He's like, yeah.
And then, um, the other day hegot his haircut and I saw him in
the mirror afterwards kind oflike checking out his haircut.
You know, it's like thosethings matter to him and they
(45:13):
should, like you said, instillthe confidence that he needs.
But it was so funny because Iwas like you're such a handsome
boy, he's like I know.
I was like, ok, well, we're notgoing to have to worry about
that department, I guess.
Speaker 1 (45:31):
Yes, so what would you advise like parents, like
what, what are some keytakeaways?
And like some tips and tricksyou want to give to parents who
may be going through a challengeright now with their kid,
whether it's, you know, gettingthem the right services or you
(45:53):
know, watching them like hurtingand not knowing what to do.
You know, or like what, aresome things that, what are some
key pieces you could advisepeople.
Speaker 2 (46:05):
Um, I think you know, one of the biggest pieces of
advice that I can give parentsis um, and families who have
loved ones on the spectrum isyou know, remember that you have
a choice.
You have a choice and how youwish to delegate and find
(46:25):
services for your child.
It doesn't mean that that'seasy, okay.
So I always tell people don'tbe afraid to ask questions.
I mean, I can't even tell youthe probably the names I have
been called for beinginquisitive or curious or
pushing.
I really had to put myself in amindset of basically just not
(46:48):
giving a shit.
I can't care about what otherpeople think about.
I can't care about why he hasautism Okay, cause that's
another big one, don't you wantto know why?
You know what?
I'm going to leave that to theresearchers.
I have time to help my child.
That's what I have time for.
I don't have time to sit hereand spin my wheels as to the why
(47:10):
, because if I focus on that,I'm taking less time away.
I'm taking that time away fromhow I should be helping him,
right.
So I always tell parents do whatyou need to do to get in a good
frame of mind, because it'shard and it is.
It is upsetting, and I'm youknow.
I sit here before you todaysounding like I'm, you know,
(47:32):
completely polished with this,but I'm not.
I mean, I have my moments too.
I feel angry, I feel upset, Ifeel hurt.
I still go through those wavesof emotion.
Allow yourself to feel what youwant to feel so that you can
move forward to provide the verybest for your child.
Don't be afraid to askquestions and if you feel that
(47:54):
someone's not a right fit, thendon't go with them.
You trust your gut.
You have to trust your gut.
If you feel like it's not goingto be the right move for not
just your child but for you as afamily, don't do it.
We've let plenty of providersgo just because they weren't a
good fit.
Speaker 1 (48:14):
Right.
Speaker 2 (48:15):
You know, and that is difficult and not saying that
any of that's easy, but it's gotto be something that it's a
have to.
It's a have to if you want themto try to even have a shot at
hitting that next level oradvancing or becoming capable in
the way that you want them tobecome capable.
You know you have to exposethem to the very best of what
(48:37):
you feel is best for you.
You know the very best resourcethat fits for you and your
family you know, and um don'thold a limitation.
There's there's so manydifferent things out there to
explore and learn and tounderstand and to know and to
use it also as a as a wonderfulexperience.
(48:58):
Drayson, I know more.
You know not just about autismnow, but I know more about
intuition and compassion than Iever thought I was going to know
in my life.
Speaker 1 (49:17):
And it opens your eyes up to a lot too.
You know, and having that, youknow be tapped into and, you
know, having that realizationlike, oh my gosh, I really do
have a really good intuition andI oh my gosh I've never felt so
passionate about anything likeI think I have now, or having
(49:38):
that, oh my gosh, I do have alot of this compassion I've been
holding and now I'm finallygiving it out Right, it just
probably brings about a wholedifferent dynamic to your life
as well and realize that if youdon't, if you aren't confident
in that, that's okay too.
Speaker 2 (49:53):
I mean, I had advocates in the room with me.
I hired an advocate and Irealized, you know, and some
people think, oh my gosh, thatmust cost so much money.
Was it an investment?
Yes, it was.
But if you know that you'regoing to pay somebody, you know,
let's say, at the time when Ihad my advocates, you know, you
know you pay 75 an hour orwhatever that number looks like.
(50:14):
Just know, though, that you'rethat's going to help you to get
the result that you need.
So, and I realized that that'sa finance.
But I had to figure out how tobudget all of that too, because
I in my mind, it was going towork and anything it took, it
was going to work.
There are resources out therethat that offer scholarship
money, that offer funds, that dothat.
(50:36):
You know state, state services,there's so much.
But you can't settle with theword no, you can't settle with
the rejection If they tell yougo find somewhere else because
there's going to be a resourcesomewhere else, you know.
So I, I, I really coach a lotof parents on that as well,
because you know they'll say, ohwell, they just told us no,
(50:57):
like make another call, findsomebody else.
Let's, you know, be the squeakywheel, and I don't like entering
that stage either.
You know I didn't want to bemean to people, or assertive.
You know, sometimes when youget assertive, people feel like
you're being rude or mean.
I was always worried about that.
I really started to not worryabout it, though, when I started
(51:18):
to see my son coming home fromschool crying every day and
going to school crying every day.
That was it for me.
You know, and I think that youknow, parentally, you enter that
stage of you know, I don't, Ijust can't care about hurting
other people's feelings rightnow.
Speaker 1 (51:36):
Right.
Well, especially, I think youknow, when you're seeing
somebody close to, that hitsyour heart, close to your heart,
like your child hurting, youknow, because a school system is
failing to deliver yes, whatthey were supposed to have
delivered, yeah, and that's thatwas heartbreaking for me too.
Speaker 2 (51:59):
I was devastated.
I was devastated and then I wasalmost a little mad at myself
because I trusted them Like Iwas almost felt like I trusted
this team, this educational team, to carry him.
So I did enter a stage where Ifelt a little upset at myself
too, you know but it wasreasonable reliance.
Speaker 1 (52:22):
Here, you know you was, you know, only reasonable
relianceiance.
You depended on them to do whatthey were supposed to do and I
think that's normal.
I think any parent, whether youhave a kid with autism or not,
anybody who sends their kids toschool, they're gonna reasonably
rely and hope for the best thattheir kid is going to learn and
(52:43):
be taken care of right in a waythat schools are supposed to
teach.
And, you know, handle your kidRight.
Speaker 2 (52:54):
Right, and to know that there was a person there.
He had a para, he had a paraprofessional with them from the
moment he walked in the door tothe end of the day.
So he had the support.
He had the support.
It was the other part thatwasn't being executed.
It was the.
You know.
Are we integrating him?
(53:16):
Are we really tracking thesegoals?
Are we taking the data points?
How are we structuring hiscurriculum based off of what's
written in his IEP?
It was all of that.
That.
That just wasn't happening.
And, um, and you know, here inArizona, each school receives a
(53:37):
different set of allocateddollars for special needs kids.
Um, and so I knew that theywere receiving a special amount
of money for Jason to attendthat school.
So for them to tell me thatthere wasn't that resource there
, I was like, well, hold on asecond, because there should be
allocated funds because hequalifies.
And they were shocked when Iasked that because most parents
(54:02):
don't know that.
And so they were shocked when Iasked it because I was well
aware, because I did theresearch and I also had
advocates to speak to about ittoo, so they were confirming I
was.
I was using other professionalsfor my to to back up the
information that I wasresearching and receiving.
So I I did.
By no means did I do this bymyself.
(54:25):
My husband and I have had ahuge support team over the years
and it took us years to findthe right, the right care team
as well, you know, um, butthat's that didn't happen
overnight either.
So I always tell parents don'tgive up, right, yeah, don't give
up.
Speaker 1 (54:43):
Well, nikki, you have been so inspirational, so
moving, and you know and Ireally hope everybody who's
listening to this and this isone thing I want to say is you
know from a person who is on theautism spectrum and it's so
easy for people to look down onpeople on the spectrum and think
(55:04):
of them as less than and havethese misconceptions about them,
and it's so easy for people tobe quick to judge.
Yeah, at the same time, peopledon't know what it took for us
to even function in our day today and I hope when people
listen to your story, nikki,people have a better
(55:27):
appreciation and understandingof what it was like for people
who are parents of kids withautism, hearing some of what
they had to go through, likehearing like your story and what
you had to go through and thefight and the persistence and
the never giving up, giving up,and no matter how many times you
(55:47):
guys got knocked down, it wasjust you kept standing up and
kept ready, kept ready to go andpull, pull the punches when you
needed to pull the punches.
Yeah, that's where you know.
And just hearing that story,hearing from other people who've
gone through stuff, and I knowthat it's so and people have a
lot of misconception.
But let me tell you, I hopethat everybody can learn one
thing it always helps whenpeople are understanding, can
(56:12):
give compassion, are not quickto judge yes, it's quick to help
.
Rather, and if you can't help,at least don't go and hurt.
It's so important that peopleyou know also, when you see a
family, when you have, when yousee parents with kids who are on
the autism spectrum, also notjudging those parents for being
(56:35):
bad parents or you know, likeyou know and making or being
making snap comments andjudgments.
Because the thing is and I hearabout this all the time, right
From people, I'm a therapist byprofession and I also hear, you
know, I heard stories like aboutthe kid family who had to get
(56:56):
off a plane because the kidneeded to eat a meal at a
certain time, and I remembersomeone messaged me and said see
, that's example of badparenting.
No, actually, that's not badparenting.
You can't force someone to eat,a child to eat, when they're
not going to eat.
You know and this is true ofanybody, I think, and I'm pretty
(57:17):
sure if any parent could chimein who listens to this who have
kids.
I don't have any kids, and Inever.
I never wanted to be a mom, sothat was a thing, for myself.
I never only thing I wanted toparent was a dog and I, you know
, I just feel like you know,even then, right, you know, when
(57:39):
people are not hungry, they'renot going to eat.
You know it just like, and.
But I feel like this is the.
We got to just be morecompassionate, reach out, help
one another, you know, becausethis is how we're going to
change the world and understandthis too.
People with autism are not lessthan, albeit just because their
journey and path looks a littledifferent than yours.
It doesn't mean that you knowthey're any less than you or any
(58:03):
better than you.
You know, it's just.
Our journeys are just differentin this maze of life.
Speaker 2 (58:09):
Yep, absolutely, and some of the most extraordinary
things I have learned, um havebeen from people with autism.
You know, I mean even speakingwith you, sonia, having you on
the show, like I have learned somuch perspective and dynamic
from you, um, as an adult, andthat's something that I take
very much to heart because Iknow that that's going to help
(58:30):
me to understand my son bettertoo.
You know, drayson, if you, ifyou take the time to look at
people's attributes, right, ifyou take the time to really look
at them and see them, you willfind some extraordinary things
about people.
Drayson is one of the mostextraordinary people I know and
(58:51):
I'm blessed because I feel likehe's the best parts of me.
He's the best part of me and Ithink, like I said, even
speaking with you, sonia, thereare so many things that you've
even opened my eyes to as anadult person on the spectrum,
because I don't know yet Ihaven't entered that stage with
Drayson, right, and thatperspective is so important for
(59:14):
me to hear because I know that Ican keep that in mind as he's
growing up and have a differentoutlook.
You know, we've we've gotten soconditioned to think inside the
box and I just my hope somedayis that people can be OK and
that becomes the new norm isthinking outside the box.
Speaker 1 (59:36):
That's really what I want for everyone.
That's exactly you know partlywhy I do what I do.
It's like for people like you,so like my book that's coming
out in 2025, you know, it's likefor people dedicated to people
like yourself.
You know are in it, in it towin it.
I say in it to win it right, youknow, you know who've been
(01:00:00):
touched by autism, why I writtenthat book, why I run these
marathons that I've run right,it is for people and once again,
you know a mile will be run inyour honor with the Chicago, new
York City marathon.
And I just feel, like you know,I'm a very spiritual person and
one thing you know I always getevery time I pray, is this
(01:00:23):
phrase always comes to my headthat God loves autism.
I always get it.
Speaker 2 (01:00:32):
I pray.
Speaker 1 (01:00:33):
So that's one thing.
I want to also end this withfolks is that God loves autism.
Thank you all for tuning in andplease like, like and subscribe
.
This is available on all audiopodcasts on the spectrum with
Sonia.
Please leave a review if you soshall feel inclined.
(01:00:55):
Of course, all reviews aregreat feedback.
All right, take care.
Hello everyone and welcome to today's episode of On
the Spectrum with Sonia.
We have a very special guesttoday joining us Nikki Shipp.
She is the podcast owner ofPieces for my Puzzle podcast,
which I had the lovely privilegeof being a guest on, which I
(00:23):
had the lovely privilege ofbeing a guest on.
On the Spectrum with Sonia is apodcast designed to discuss
autism spectrum, mental healthchallenges and anybody who's
overcome any challenge.
That is inspirational andleaves people feeling filled
with hope, connection, love,support and empowered.
(00:45):
So today, let's please join mein welcoming Nikki to our show.
Nikki welcome.
Thank you so much for coming onhere this morning.
Speaker 2 (00:55):
Hi Sonia, Thank you so much for having me.
I'm very excited to be heretoday.
Speaker 1 (01:00):
I'm excited to have you.
Speaker 2 (01:02):
So tell us a little bit about yourself and how
autism got introduced into yourlife years ago because I was
(01:28):
introduced with about autism, Ishould say because my son was
diagnosed at the age of three,just after the age of three.
So I didn't know much aboutautism prior to that.
I'd always heard about you know, quote unquote autism, but I
didn't really know what it wasand so I didn't.
You know, jason wasson was myfirst biological child and I
didn't necessarily know orunderstand that maybe
(01:50):
developmentally he was behind incertain areas.
So, um, I noticed he wasn'tspeaking much and that was the
biggest thing for me.
Um, so we did have a wonderfulpediatrician that um, one day,
at one of his wellness exams,saw Drayson stemming, flapping
his hands, and so she referredus to a developmental
pediatrician and we were veryfortunate and blessed as well to
(02:15):
have another wonderfulphysician with us to help us
with Drayson's care.
But basically we found out thatDrayson had autism at the age
of three.
But basically we found out thatDrayson was had autism at the
age of three and that put myhusband and I both in kind of a
tailspin, I think, you know,it's really common for a lot of
families to feel that way, whenyou receive a diagnosis and you
know nothing about it and you'renot sure what to do and you
(02:38):
know they hand you this list ofthings to do and say, okay, you
know, come back in six monthsand let us know how you're doing
, kind of thing.
So that's, that's how we gotthrown into the world of autism
and and it was.
It was a little daunting atfirst.
You know, our developmentalpediatrician was fantastic, is
fantastic, but she just was alsovery real.
(02:59):
Like he might speak, he mightnot ever speak, he might call
you mom, he might not call youmom, and that was really
devastating for me personally.
So I had a little bit of agrieving period, and when I say
grieving, not because I lost allhope or anything, it's just the
idea of what I thought my soncould become or the picture that
(03:22):
the expectation I almost put inmy head was there.
I had to completely dispelmyself from that and to realize
that he just learns differently,he might communicate
differently.
Everything that I thought wasgoing to be quote unquote normal
was now not going to be normal.
So after my grieving period ofthat and kind of letting go, I
(03:44):
really delved into what type ofcare he would need, what type of
resources I could find I kindof became that squeaky wheel of
a mom and you know, excuse measked a ton of questions, wasn't
afraid to ask questions.
I probably got a bad rap atsome places because I was almost
maybe probably too intrusive,to be honest with you, but I
(04:06):
wanted to get that care for myson and um, and so we were very
lucky.
We put him into preschool, um atthe age of three and a half and
um his preschool teacher had amaster's with special needs, in
special needs education with anemphasis in autism.
So she was a great mentor to meand taught me quite a few
(04:27):
things about, in terms ofeducationally, what I could do
for Drayson and questions Icould ask.
So I was very fortunate to comeacross that it still didn't
inhibit moving like later on.
It didn't inhibit some of theproblems that we had at his
school.
But it was very, very difficultin the beginning for us to even
(04:52):
find services and I think ittook me almost a full year to
qualify him, have him becomeeligible for services and then
to find the care providers toprovide care for him.
So, fast forward, a year later,we finally got things
implemented for him.
We started to see progress.
I was happy to announce.
About six months after hisdiagnosis, he called me mom for
(05:13):
the first time.
So I knew, I knew in thatmoment that he was capable.
The first time I ever heard himcall me mom and um.
And that's actually a reallyfabulous story, because I was
headed to his daycare to pickhim up and I didn't realize that
, I didn't realize that my ownchild was calling my name.
(05:35):
I heard some kid in thebackground yelling mom and I
thought it was some other kid,you know like, where's this
kid's mom?
And I realized it was him.
He saw me walk past the roomand he was coming after me and I
remember feeling very hopeful,like I realized in that moment
oh my gosh, he's, he is capableand he's going to be able to do
(05:55):
these things.
So that's where my moment ofbelief started for Jason, about
six months after his diagnosis.
That's when I really started tounderstand that he was capable.
I just had to find a differentway to expose him so that it
worked with his learningcapabilities, so that he could
(06:15):
then, you know, have a voice ortry to communicate in some
fashion, even if it wasn't goingto be vocal.
How was I going to get him tocommunicate more with us.
So in the beginning things weregreat.
We had a lot of supportiveeducators.
It wasn't until he was insecond or third grade we really
kind of started having problems,which, educationally, sometimes
that's a pivotal point incurriculum, right they kind of
(06:38):
start laying on a little bitmore heavier curriculum with the
kids and that's when we reallystarted having problems.
Was was first, second, thirdgrade.
We really started seeing thatthe support wasn't what we
thought it was going to be.
And and also the when I saysupport, I'm not just talking
about educationally supporting achild, I'm talking about the
(07:02):
social, emotional component.
Speaker 1 (07:04):
Sure, and you know, and before we go more into that,
I was just, I would like tohear from you just the fact that
you were at one point toldright, yes, yes, your kid might
not ever speak to you, he maynever call you mom, you may
never ever say I love you, oranything like that.
Right To finally hear you begetting called mom.
(07:25):
Six, months after the diagnosisjust walk me through what.
What did that feel like for youLike?
Speaker 2 (07:30):
walk me through what was going on.
Oh my gosh, I you know I had somany waves of emotion.
First of all, I criedhysterically.
I got in the car and I calledmy husband because I couldn't
even believe that he called memom.
And it was so, it was soinnocent.
I was walking past the room togo get, to go pick them up and I
didn't realize they'd movedinto a different room.
So he saw me walk across thewindow.
(07:52):
The lady, the aid, was tryingto tell him to stop and he ended
up grabbing her by the hand anddragging this woman out of the
doorway into the hallway to getmy attention and I could hear
this mom, mom, mama, mama.
And I'm like somebody find thatkid's mom.
(08:14):
And I turned around like whatis the problem?
And I was like literallymid-sentence in my you know,
like what is going on kind ofthing is what I was saying.
And I turned around and it washim.
I immediately got teary-eyed.
I looked at the aid and I saidI'm so sorry.
And she kind of looked at melike and I literally said to her
(08:34):
I said he's never called me mombefore.
Speaker 1 (08:36):
Oh, my God.
Speaker 2 (08:38):
So she started to break out into tears.
I got into the car.
I was hysterically crying.
My husband thought I got into acar accident.
I was crying so bad.
And um, and I remember gettinghome and hugging Dresen and
telling him that I loved hearinghim call me mom.
(08:59):
I told him.
I said I love hearing yourvoice.
I said I love hearing yourvoice.
I said, son, I am, I love thatyou called me mom.
Thank you.
I wanted him to know that.
I wanted him to also feelencouraged to continue to speak
Right.
So I wanted him to know howmuch I loved hearing his voice.
I felt a sense of guilt for amoment too, because I didn't
(09:20):
recognize his voice.
So when I realized it was myson, I also almost felt a moment
of guilt because I didn't evenrealize it was him.
And after that, everything else, everything else that we've
been through, that's beenextremely difficult.
I always go back and remindmyself of that moment, always.
Speaker 1 (09:41):
And it's so.
You know, this makes me want tocry, actually, because it's so
emotional.
Like I could feel the emotion.
I feel like I was just therewith you.
I feel like you know what I wasin that hallway with you, as
you were sharing that.
I feel like, oh my goodness,and just I can only imagine just
the shock and just the you knowthe, the pride you must have
(10:03):
felt in it, and just the shockand just the you know the, the
pride you must've felt in it,and just the idea, just that
whole idea of, oh my gosh, youknow, he's defied the odds,
despite what the doctor said, hemight not ever speak to me.
Oh my gosh, he's speaking to mefinally, yay.
Speaker 2 (10:19):
Yeah, and I think that that was my I always call
it my moment of belief.
That was my moment of beliefand I think that every parent
has that with their child and itwas the choice of what do I do
with that.
I wanted to keep going.
I was like let's do this, likeI want to explore this now
because I'm seeing that he'scapable.
(10:40):
And if I had just gone intothat state of, well, she said he
may or may not.
Speaker 1 (10:50):
I guess he's not going to and I settled for that.
Then where would he be today,right, right?
So so we're going to be fastforwarding.
Now he's in first, second,third, we're in early elementary
school.
Now you had started to say thatthe emotional and social
support wasn't what you thoughtit would be Right, it was very
antithetical to what you hadexperienced in the preschool
(11:11):
years.
Yes, yes, what changed?
Speaker 2 (11:18):
Well, we had moved to a different school.
That had changed.
We had moved out of where wecurrently were living and into a
different school district.
And here in the state ofArizona you can't.
There's no boundary exemption.
If you have a special needschild who has an IEP, you have
to stay within the district ofwhere that IEP goes to.
So we knew we wouldn't be ableto commute him to the school
(11:39):
that where he was currentlyexisting, where he was currently
existing.
We had heard great things aboutthe school.
We vetted the area we weremoving to.
I did my research, I did myhomework.
Like on paper it all lookedfantastic.
You know, initially, in thebeginning, kindergarten went
(12:00):
well, but it was as he got intofirst, second and third grade I
just started to see some thingswithin the system that that it
was just, for lack of betterwords, a broken system.
It wasn't just the educationalcomponent that I felt like he
wasn't being supported on, butthe social, emotional component,
which is a really big deal forkids.
(12:21):
You know, sometimes I thinkthat's even a bigger deal than
some of the curriculum that wehave to that we put our kids
through.
But it changed with theeducators and I felt for them in
the sense of I could see wheretheir resources were limited.
There was limitations for theseeducators, so I could see that
(12:42):
frustration for them.
There was limitations for theseeducators, so I could see that
frustration for them.
But I also the administrationwas horrible in delegating the
type of care that Drayson reallyneeded under a special needs
category.
But I started noticing things.
Like you know, we'd makespecial accommodations for
(13:04):
Drayson.
He had an aide with him all thetime, so we were able to get an
aide that would sit with him toassist him with tasks and doing
things at school.
I found out that they, you know, in the morning he would walk
into the gate and he'd gotowards his classroom.
I thought he was going to standin line and lo and behold, I
found out that they would.
The aide wouldn't allow him tostand in line and lo and behold,
(13:25):
I found out that they would.
The aid wouldn't allow him tostand in line.
She was being told to take himto the library and make him sit
by himself and I didn't know ifthere was a behavioral issue
going on.
Was it sensory?
Was he overwhelmed Like?
And then I started to noticethat he at school pickup.
(13:46):
They were asking us to go tothe front office and not to the
school pickup line, and, um, Ididn't understand why that was
happening either.
So when I started askingquestions, they you know, they
sent me an email saying we justfeel like it's better for
Drayson.
And so when I I started askingquestions well, is there a
(14:08):
behavioral issue or is he actingout?
Because, if so, I want to knowso that we can work on that with
my home care team, cause I hada, I have a team of home care
providers that help us, so Iwanted to maybe devise a goal to
help with that if that was thecase.
And they said, no, everything'sfine, drayson's great.
We love Drayson.
He's such a sweet boy.
(14:29):
And I thought to myself why arethey removing him from his peers
?
And you know, they startedtelling.
They finally came out that itwasn't for Drayson.
It was because the, the aid hadto clock out by a certain time
and it was just easier for themto move him.
It was just easier for them totake him to the library and sit
by himself before he went to theclassroom, and so I had to
(14:52):
literally advocate for him to beable to stand in line with his
peers, because I had to explainto them that the peer modeling
watching his peers socialize,observing that, being around,
that was important for himbecause of his social behaviors
(15:14):
and not knowing you know, tryingto learn how to integrate there
was no peer modeling happening.
They were just putting him intoisolation.
Speaker 1 (15:22):
That is so heartbreaking and
heart-wrenching.
It's like it seemed like theydidn't really, they were just
doing the path of leastresistance because they wanted
to do things that wereconvenient for them.
Notwithstanding the fact thatyou know and going to your point
earlier, you know just thewhole social emotional piece of
going to school.
(15:42):
Right, that's huge, because ifyou're not in a good environment
, it doesn't matter how good theeducation system is.
If you're not in a good socialemotional environment where you
can thrive, it only makes theacademics that much more
difficult and challenging, in myopinion.
Speaker 2 (16:00):
Well, yeah, and I even said to them just because
he can't communicate to you howhe's feeling right now does not
mean that he doesn't communicateto you.
How he's feeling right now doesnot mean that he doesn't have a
feeling over this.
You know, you don't.
You are automatically givinghim the belief that he's
different from everybody elsebecause you're isolating him and
standing 10 minutes in themorning in line with his peers
(16:20):
and 10 minutes at the end of theday in line with his peers is
20 minutes a day of peermodeling time times five times a
week.
When you, when you just if youquantify it and that's what I
ended up telling theadministration when you quantify
those minutes of peer modelingthat you're taking away from him
(16:40):
, you are putting him furtherand further away from socially
trying to integrate with people,right, and that was very
upsetting to me.
Speaker 1 (16:53):
I can only imagine the pain that you must have felt
, just having to witnesseverything you know, having to
fight with the school systemthat had no little to no
understanding, if any, you know,and even saying little
understanding is being generoushere, you know, you're having to
(17:13):
advocate for your child, who'shurting yeah, because he's being
treated like he's some kind oflike prisoner for all practical
purposes, right, it just seems.
It's just so heartbreaking, andyou know the fact that you're
sharing the story.
I wonder how many more parentsshare what they had like
(17:38):
something similar to whathappened to your son.
What I remember when I told youwhen I was a guest on your
podcast, you know about some ofthe incidents that I went
through and and my parents dolisten to my podcast, and so I
think when they hear whathappened to your son, I think I
know, I know they will get aflashback of what they went
(18:00):
through with me, even becauseyou know it just.
It's just the fact that, firstand foremost, you know it just
shows the power of ignorance.
Ignorance and power of lazinesson top of that, right.
Speaker 2 (18:16):
Well, and it's just, and you know, based on all the
conversations you and I have had, sonia, you you'll know as well
as I do this.
What I'm describing right nowis just one of several types of
incidents that we had to dealwith with with Jason.
I mean even down to theprogress reports.
Like the progress reports I wasreceiving, they would tell me,
oh, you know, he's met 30% ofthis goal.
(18:38):
So when I would ask to see thedata to understand how they were
articulating that he had madeprogress on 30% of the school,
they weren't providing datapoints to me and I couldn't
understand where they weregetting his progress.
And oh, he's not reallyprogressing here.
But oh my gosh, here he at 60%.
I'm like okay, but it doesn'tseem like he's progressing or
(19:00):
advancing.
So what's going on here?
And when I started askingquestions about that, we kind of
entered another stage of um ofof a huge debacle, basically
that I found out that they werenot, basically they were not
taking data to support what theywere telling me on the progress
(19:21):
boards.
Because when I finally askedfor the files, they said we
can't give you a file.
We can't give you a filebecause there is no data to
support there is no data in hisfile and said over a two-year
(19:49):
time span that they had missed786 service hours because they
didn't have data to support anyof it.
So they had been giving meprogress reports for two years
with no data to support wherethey were getting those numbers
from.
Wow, that's just flabbergastedyeah it was and that's when I
always call it my mama bearinternal rage moment really
(20:13):
happened and, like you weresaying, how many other parents
has this happened to?
We ended up transferringDrayson and finding a school
that was much better suited forhim.
Suited for him and, um, and Iremember saying, after we went
through that whole ordeal withthat school, I said to my
(20:33):
husband how many other parentsand families is this happening
to that?
We cannot.
You know that that the amountof frustration because it's not
just it's not just the logisticsthat you're putting up with,
you're dealing with your ownemotions I was, I was pissed, I
was upset, I was sad, I wasworried for my son, um, my
(20:54):
anxiety went through the roof.
I mean, it was almost like Ifelt like I was developing a
form of PTSD, because every timeI would get a progress report
or I get a call from the school,I would trigger Sure.
And so, get a call from theschool, I would trigger Sure,
and so I think that was thebiggest thing for me personally,
and that's how I ended upstarting the podcast, because I
(21:15):
said to my husband how manyother families is this happening
to?
This Can't, this can't go onlike this and we have to know
how to advocate for our childrenand to be able to speak on
their behalf, and that takes alot of courage and it takes a
lot of strength to do that.
Speaker 1 (21:33):
It does, it does and you know it.
It just makes it so much morearduous when, there, you feel
like you're basically travelingin this maze where you're kind
of blindfolded, whereaseverybody else has these, you
know, are fully able to see andhear and everything, but it's
(21:57):
like you can't even see well andyou're getting at all at all
because you're blindfolded andyou're just going into hedge
after hedge after hedge in amaze, whereas everybody else is
finding pathways everybody elsehas access to, perhaps maybe
throw some breadcrumbs, you know, to find their way out.
It's just so, um, I just canonly imagine how lonely this
(22:20):
must have felt for you as well.
You know it just felt, you know, for you to have to go through
this, and you know, and I hearyou talk about like you know, it
just felt, you know, for you tohave to go through this, and
you know, and I hear you talkabout, like you know, of course
you know, part of being inspecial ed is it's for people
who have a different way oflearning right and they learn
differently, right.
It's not that they're any lessintelligent or anything like
(22:40):
that.
And you know there aredifferent types of special ed
programs but, um, and you knowthere are different types of
special ed programs but you knowthe you know.
So you had certain progressgoals.
You know that was supposed tohave been met by the team.
What were some of the goalsthat you were hoping to have
Drayson achieve with those goalsin those meetings?
Speaker 2 (23:03):
You know it's funny because the way that the IEPs
here are broken down are.
You know it's funny because theway that the the IEPs here are
broken down, or you know, bycategory.
So of course he had, like hisreading, his math, his
comprehension, um, one of thethings that I couldn't
understand was the comprehensionpiece, because he didn't seem
like he was still comprehendingthings very well.
And, um, at the time and I wasvery blessed, I had a, I had a
(23:26):
team of advocates, I did, I hada company that two women that
were very, very pivotal inhelping me.
They were, they were advocatesand they helped coach me and and
even advocated for me in thatroom.
But some of the goals werewritten as such that we, you
know, I kept saying I thinkthere's something more going on
(23:47):
with his comprehension.
Oh no, he's fine, I'm like, andthe advocate said do you know,
have you considered he might bedyslexic?
And the school said oh no, hereads just fine.
And I said it's not justreading.
There's more to dyslexia thanjust being able to verbally read
a page.
He's not answering, he's notseeming to recall immediately.
(24:09):
So we read a simple paragraphand he couldn't recall who, who
in the story and I was likesomething's going on.
So we ended up pushing him tohave him tested and they didn't
want to test him.
They denied the test.
So I requested an independentevaluation, which I don't know
if a lot of parents know this,but you have the right to
requested an independentevaluation, which I don't know
if a lot of parents know this,but you have the right to
request an independentevaluation If you are not
(24:32):
satisfied with the evaluationthat the school has done, sure,
or if they don't want to.
So I ended up going straight todistrict and I requested an
independent evaluation.
And, lo and behold, after hisassessments it came back that he
not only was dyslexic, but hehad dyscalculia and dysgraphia.
I am not the educator, okay.
(24:54):
What upset me was that how comenobody was open to the idea of
that?
If you know within yourprofession what some of these
things might look like, I haveto.
That was a level of trust that Ihad to try to have and I
couldn't have it anymore withinthem.
Wow, you know.
(25:16):
So they would tell me oh, youknow, he's not doing really well
with comprehension, but he'sgetting there.
He increased by 10%.
He wasn't increasing at all, hewasn't advancing at all because
they weren't ever assessing it.
Social emotional goals werewritten in there and his social
emotional goal was really lowtoo.
Well, when I found out thatthey were pulling him out of a
line and not allowing him to bearound his peers, or letting him
(25:39):
go doing something else atrecess and not kicking him
outside with the rest of themright and trying to to put some
things in place to allow him tobe socially integrated, um, he
wasn't hitting the goal onsocial emotional either.
Speaker 1 (25:53):
Right, you know, and I just feel like that's such a
travesty in the field ofeducation that you have these
people who are supposed to knowa little better and who are
supposed to at least you know.
You know if they're red flags,that you know, maybe there's
(26:14):
some things that need to beevaluated.
If you know a person is havingtrouble, you know, with reading
comprehension, a person wealready know is on the autism
spectrum, Is there maybe perhapsanother contributing problem to
this too?
Because you know it's so?
It just, it's just a travestythat these, it just seems like
(26:35):
those people didn't want to doanything.
It seems like they they'drather just sit and be lazy.
It's, it just seems to me.
And what you're telling me andI don't.
Speaker 2 (26:43):
I don't necessarily blame the educators, I think
what's?
Because I see both sides ofthat.
They are limited in theirresources.
They've got 30 kids in aclassroom, they've got, you know
, all these things.
And then they have to deal withalso what the administration is
telling them.
And you know, I taught in highereducation for a better half of
a decade, so I understand thethe kind of the behind the
(27:03):
scenes dynamic of what happens.
You know, from a performancestandpoint, schools have to
produce numbers, they have toproduce results, they have to do
all this stuff.
So if it looks good on paperfor them, that's what they're
gonna try to maintain.
And districts andadministration higher level
administration is alwaysbarreling down on educational
teams about what they can andcannot do.
(27:25):
So it's like I was fully awareof that.
But I think I was just more ina state of shock that, as I was
actively coming to those higherups, to that administration, to
district, the amount of pushbackthat I was receiving, that's
when I had my breaking point andthat's when I realized that he
would never be successful atthat school because it would be
(27:46):
a constant fight.
They would constantly, theywere constantly going to combat
me with his goals and and not doright by him.
So I made a decision to vetother schools and I transferred
him out.
Speaker 1 (28:01):
You know, and then I was a process like for you to
transfer him out of the schooldistrict and into another one.
That was hard.
Speaker 2 (28:08):
It was very difficult .
First of all, we had to qualifyfor some scholarship dollars
because to go to a privateinstitution was going to be
costly.
We're very lucky here inArizona we have some wonderful,
wonderful schools that arespecifically for kids who have
autism.
(28:28):
But what I realized, evenwithin that realm, was that
there were certain schools thatwouldn't take Drayson because he
was too much of an advancedcase.
So I had to also field therange of autism schools just to
find the school for him range ofautism schools, just to find
the school for him.
And I we'd already beenrejected.
(28:49):
We got rejected, um, I think,three or four other times on
applications and I remember theschool where he's at now.
When we interviewed I realizedthat that was going to be the
school for him, because thedirector of that school asked me
a very important question rightoff the bat when I met her.
And that was what would you likefor me to know about your son?
(29:12):
And she said that I was sotaken aback I literally got
really teary eyed.
I think I almost started to crya little bit because I said to
her my son is a wonderfullysweet boy who is poorly
misunderstood, and it still.
(29:32):
It still makes me emotional,sonia, because no one had ever
bothered to ask me that and um,and that really hit me hard and
I remember getting off thatinterview with her just saying,
please, god, let him end up inthis school.
Like I know this would be sucha good school for him because of
the level I mean we're talking.
A director of a school coming tome and saying, what would you
(29:54):
like for me to know about yourson?
I mean it was just an amazingthing.
So we were lucky he ended upgetting in and he's been.
He just entered his fourth yearat the, at the Autism Academy
here in Arizona and I could notbe more pleased and more proud
of that institution, of thatorganization, as well as as my
(30:16):
son.
But it took us years to find Imean years for us to find that
home for him.
Speaker 1 (30:24):
You know, I'm so happy you were able to find
something for him.
And when you talk about hisjourney in education, now being
at the school he's at, he's beenthere for four years Um, what
do you notice?
Like, what do you see differentnow?
Like, how do you see a change?
Like what have you noticed?
Just transformation.
Speaker 2 (30:46):
He he's happier, he doesn't seem so anxious.
Um, you know he was enteringhigh levels of anxiety, um, at
this other school.
I mean, he would cry every daygoing to school and I would cry
after I would drop him offbecause I would feel so bad that
(31:06):
I left him crying.
Um, and you know, I realizedsometimes it's a detachment
thing, like I don't want toleave my mom.
But this wasn't it, it wassomething else and I knew it.
Now, I mean, he gets upset whenhe doesn't go to school.
Um, now he, you know, even withthrough summer break, we had to
(31:27):
do a countdown for when schoolwould start and he would, you
know, I think, like the weekbefore school.
I said you have one week and hewas like, yes, school, like you
know, actively excited.
I didn't realize until this lastopen house that we just
attended for for the new schoolyear.
I didn't know that he waspopular.
I mean, all these kids weresaying hi to him in the hallway
(31:50):
and he was saying hi back.
I didn't know that he wouldreciprocate like that to see him
saying hi to kids or oh hi, youknow he would.
Oh hi, peyton.
Oh hi, you know, you know.
Oh hi, tim, like he's.
He's such he's blossoming in hisown way.
It might still not be the mostideal version of what society
(32:11):
thinks that is, but he's doingit, you know, and I'm asking
like little open-ended questions.
You know, like the other day Iran into, like the bed and I
stubbed my toe and I was like ow, and he's like, oh my gosh, are
you okay?
And I was like I'm fine.
He's like did you hit your toe?
I'm like I did hit my toe.
Like little things like thatnever happened, even up until,
(32:36):
you know, two, three years ago.
And we started to notice that hewas more relaxed, he was calmer
, he was happier and andeveryone there is super
supportive.
I mean, the culture iscompletely different there and
that's what I needed for him,you know.
And he seems more playful in alot of ways too, in his own way.
(32:57):
Sometimes you don't see itemotionally, you might not see
it, but he also reciprocates.
You know, if I put my hand out,he'll hold my hand.
If I ask him if I can have ahug, he'll hug me.
All of these things weren'thappening four years ago, you
know, and I think it's becausehe was displaced and he felt
displaced and he felt, um, youknow, he didn't feel supported
(33:23):
and and he doesn't, and and I'mstill his voice.
He's 12 years old now.
He'll be 13 in February, sowe're getting ready to go
through preteens.
I'm so excited for that.
But you know, now I know I canspeak to him and he understands
what I'm saying you know whichwhich has before he was so
closed off and shut down, whichis before he was so closed off
(33:47):
and shut down.
And I think sometimes we don'trealize as adults how
influential we are with anychild, not just autism or not
any child, how we influencechildren.
I don't think that sometimes werealize in such a way of how we
can sway that for a child andcreate a really positive
(34:08):
experience if we want to.
Speaker 1 (34:11):
Absolutely.
You know and it seems like youknow you've done a lot of work
here and it's commendable allthe research you've done, all
the help you sought.
You know getting the advocates,getting the special education
attorney to help out.
You know doing all what youknow getting the advocates,
getting the special educationattorney to help out.
You know doing all what youknow investigating other schools
(34:32):
.
You know using also yourmotherly instincts as well,
right to you know really propelforward and push Drayson forward
.
And you know the way youdescribe Dray Jason.
Now I can even tell just by howyou speak about it.
It's like night and day.
(34:52):
It seems like two differentpeople.
Speaker 2 (34:56):
And people who haven't seen him in a while will
say that, oh my gosh, he isdoing so well.
Oh my gosh, like I can'tbelieve that he, you know, said
hello or, you know, said goodbye, or gave me a high five or you
know, just anything like.
Even people that haven't seenhim in a while have noticed the
difference.
And that's when I realized, youknow, I realized that it's just
(35:20):
more moments of belief for me,right?
I feel like every day now I'mentering more moments of belief
than I am being worried orscared about his potential, and
it just makes me want to keepgoing forward more, you know,
and Drayson's school experiencewas one battle, but we had our
own battle, even with the statehere, to get him services.
He was denied programs.
I had to write, write appealsand petitions and and I tell
(35:43):
people all the time that, yeah,it's exhausting and it's a fight
, um, and you have to keepyourself centered and you have
to keep yourself in a in a waythat you can still be you,
because you do feel like you'relosing yourself a little bit
when you start going through allthis.
I mean, I remember walking outof a lot of the meetings at
Drayson school, going.
Everyone's telling me this, amI crazy?
(36:06):
And that's where you reallyhave to tap into your
self-belief and your intuition.
And I tell parents that all thetime.
Two things don't underestimateyour children and a whole always
hold belief that they'recapable, and the other is hold
the belief that you're capableand always trust your intuition.
Speaker 1 (36:34):
Those are the things I always tell parents, you know,
is that you have to hold beliefand you have to trust your
intuition Absolutely.
You know you can't just and it'sso important that because the
way I look at it is you know youare the number one advocate for
your child and you're the onlyone, a lot of times, most often,
that can make the differenceand anything you do, everything
(36:54):
you do, everything you say,makes a difference, you know.
And if it's, you know and itmakes me emotional how to think
about this, but you know, Ihonestly feel, because I'm on
the spectrum, as you know, and Ihonestly feel like, if it
wasn't for having a strongmother figure, you know, who
(37:15):
believed in me and believed inmy education, um, I had a
teacher, um, a fourth gradeteacher who ended up becoming my
tutor starting in fifth grade,and if it wasn't for her seeing
my potential, you know it's ittook a lot.
But I also feel like, you know,because the school, when they,
(37:36):
when I was younger, they told myparents Sonia would be lucky to
make it to eighth grade or getto high school and I was to be
anything, you know, if anything,I think they thought I'd just
end up in an institution orrelegated and you know, but to
surpass what everyone said thatI couldn't have achieved.
You know, that's a feeling thatit's hard to even put in words
(38:04):
at times.
The feeling of that, andknowing a lot of it, is because
you had strong people in yourlife that believed in you.
Yeah, yeah.
Speaker 2 (38:14):
And I think that's one thing overall I feel like I
realized was really lacking,that I never knew.
I didn't know that belief waslacking so much within society.
Like I was talking about thatmoment of belief, I wanted
everyone to believe the way thatI do about my son.
I want everyone to believe thatchildren are capable to do
(38:38):
these things.
Without bringing mypreconceived notions, all of my
preexisting know how I wasbrought up, all of that.
I had to put that all out thewindow.
I had to basically clear theslate and find a new way of
belief and that's.
(38:58):
You know, that's a really hardthing to do, but if you don't
understand, if you don't seethat as a core, fundamental,
then it will be even harder.
It will be even harder.
It will be even harder to findthose resources or to go.
Why am I even doing this?
You know he's not.
They said he's not going totalk anyway.
Why am I going to even do this?
You know, and that's that's amindset, and I, you know, and
(39:22):
here's the thing is, you know,and I tell Jason this all the
time I'm like son, you arecapable of anything you want to
do, and I and I told him when hewas born before I even knew he
had autism, that he was meantfor greatness, and I still tell
him that today.
And he needs me to believe inhim so that he can go on and
(39:43):
believe in himself, because whenwe're young, when we're kids,
we don't know what that means,we don't know that.
We, you know, we don'tunderstand that.
So I have to be the mentor tocultivate that for him.
You know, and I think thatthat's so, so important and
there's so many wonderful careproviders out there that do
(40:04):
amazing things for our kids whoare on the spectrum, and I think
that they're just those addedmentors that we need in our
lives to help support, you know,and I wish there was more of it
out there, just societallyanyway, not just for autism, but
just in general.
It would be nice if we all werea little bit more like that.
(40:24):
But you know, at least that'smy solution for changing the
world.
I guess I don't know.
I'm just kidding.
Speaker 1 (40:32):
Oh my gosh, your story is so amazing.
I feel like we need you towrite your story.
We really do.
Your book needs to come out too, of course.
You know you and I know somegreat people who could help out
with that.
But I think you know that yourstory is so inspiring, so
(40:55):
powerful.
What are some of the things,though, that you've noticed,
like, what are some of thebiggest achievements thus far
that you've seen for drayson,where you felt, maybe before
you're like, oh my gosh, is thisever going to happen?
Is this ever going to happen,apart from him at six months
later calling you mom?
(41:16):
Right, what have you seen thebiggest achievements thus far in
this new school and this thathe's been in now for four years?
Like what?
What are some achievements thatyou even were like, oh my, my
gosh.
Speaker 2 (41:28):
Yeah, the, the, the reading and the comprehension,
the knowledge that he's intaking cause, even though he's
not verbal all the time like he,he speaks, and still in
fragmented, fragmented sentences.
So he doesn't necessarily.
It's not like I can sit withJason and have a full back and
forth conversation with them,but like simple example, the
other day the television was on,it was some documentary and
(41:51):
there was a picture of theStatue of Liberty on there and
he walked in the room and saidthat's the Statue of Liberty?
And I was like, do you know theStatue of Liberty?
And he goes, yeah, and myhusband said, well, where's the
Statue of Liberty, where is theStatue of Liberty?
And he goes, yeah, and myhusband said, well, where's the
Statue of Liberty, where is theStatue of Liberty?
And he says in New York.
And we were both like, okay, soclearly he's retaining
(42:12):
information and we didn'trealize that he even knew some
of this stuff and so just littlethings like that.
We're noticing he has culinaryclasses at this school, so he's
trying new foods, so he willcome home and and he gets kind
of a little, you know, he canhave something extra if he's
tried a food that he doesn'treally like you know him even
(42:36):
being open to doing that.
Um, because they've created anenvironment for him at school
where you know he doesn't feelanxious, he doesn't feel nervous
, he doesn't feel scared, and sowe've noticed that he's trying
new foods.
Um, he came home the other dayand told me he he, he tried a
lemon roasted potatoes and Isaid oh, did you like those?
(42:56):
He goes yeah, and I said wouldyou like me to make them
sometime?
He goes no, thanks, okay, well,you know so.
I mean he tried it.
So we're noticing that.
The biggest thing for me is thesocial connection, which I know
is not academic based, but it'sbeen amazing.
(43:18):
We had some company over a fewweeks ago recently, and they
brought their daughter and heactually went outside to go play
and we had like three or fourlittle kids here and he went and
put on his swim trunks andended up jumping in the pool
with them and we couldn'tbelieve it, because that's not a
(43:38):
normal initiation for Jason.
Wow.
So we're seeing him start to tryto initiate, just even being in
the same social circle, and hekind of laterally played.
He played a little bit, he theywere jumping off of the deep
end, so he kept saying look atme, and they were taking turns
jumping off the diving board andI just remember thinking he's
(44:00):
asking for their validation.
You know he's hey guys, my turn, okay, now you go.
And I was just like, oh my gosh, he's initiating, he's engaging
, um, and these kids were.
So the kids were beautiful,they were wonderful, you know,
and, yeah, heartwarming story,yeah, heartwarming story.
Speaker 1 (44:21):
So you know it just puts a big smile.
You know I can't just have thebiggest smile on my face just
listening to this and seeing.
You know that you know thingsare moving along.
You know, you know things areheading in a good direction for
him and you know he, he soundslike he's actually even getting
more confident too, withinhimself, his ability, as well,
(44:44):
as you tell his story.
Speaker 2 (44:48):
Yeah, he's almost, I think, getting a little too
confident, but I'm okay with it.
Like I said to him the otherday, I said you look so handsome
, I know.
Oh, okay, I don't.
I said, you know you'rehandsome?
He's like, yeah.
And then, um, the other day hegot his haircut and I saw him in
the mirror afterwards kind oflike checking out his haircut.
You know, it's like thosethings matter to him and they
(45:13):
should, like you said, instillthe confidence that he needs.
But it was so funny because Iwas like you're such a handsome
boy, he's like I know.
I was like, ok, well, we're notgoing to have to worry about
that department, I guess.
Speaker 1 (45:31):
Yes, so what would you advise like parents, like
what, what are some keytakeaways?
And like some tips and tricksyou want to give to parents who
may be going through a challengeright now with their kid,
whether it's, you know, gettingthem the right services or you
(45:53):
know, watching them like hurtingand not knowing what to do.
You know, or like what, aresome things that, what are some
key pieces you could advisepeople.
Speaker 2 (46:05):
Um, I think you know, one of the biggest pieces of
advice that I can give parentsis um, and families who have
loved ones on the spectrum isyou know, remember that you have
a choice.
You have a choice and how youwish to delegate and find
(46:25):
services for your child.
It doesn't mean that that'seasy, okay.
So I always tell people don'tbe afraid to ask questions.
I mean, I can't even tell youthe probably the names I have
been called for beinginquisitive or curious or
pushing.
I really had to put myself in amindset of basically just not
(46:48):
giving a shit.
I can't care about what otherpeople think about.
I can't care about why he hasautism Okay, cause that's
another big one, don't you wantto know why?
You know what?
I'm going to leave that to theresearchers.
I have time to help my child.
That's what I have time for.
I don't have time to sit hereand spin my wheels as to the why
(47:10):
, because if I focus on that,I'm taking less time away.
I'm taking that time away fromhow I should be helping him,
right.
So I always tell parents do whatyou need to do to get in a good
frame of mind, because it'shard and it is.
It is upsetting, and I'm youknow.
I sit here before you todaysounding like I'm, you know,
(47:32):
completely polished with this,but I'm not.
I mean, I have my moments too.
I feel angry, I feel upset, Ifeel hurt.
I still go through those wavesof emotion.
Allow yourself to feel what youwant to feel so that you can
move forward to provide the verybest for your child.
Don't be afraid to askquestions and if you feel that
(47:54):
someone's not a right fit, thendon't go with them.
You trust your gut.
You have to trust your gut.
If you feel like it's not goingto be the right move for not
just your child but for you as afamily, don't do it.
We've let plenty of providersgo just because they weren't a
good fit.
Speaker 1 (48:14):
Right.
Speaker 2 (48:15):
You know, and that is difficult and not saying that
any of that's easy, but it's gotto be something that it's a
have to.
It's a have to if you want themto try to even have a shot at
hitting that next level oradvancing or becoming capable in
the way that you want them tobecome capable.
You know you have to exposethem to the very best of what
(48:37):
you feel is best for you.
You know the very best resourcethat fits for you and your
family you know, and um don'thold a limitation.
There's there's so manydifferent things out there to
explore and learn and tounderstand and to know and to
use it also as a as a wonderfulexperience.
(48:58):
Drayson, I know more.
You know not just about autismnow, but I know more about
intuition and compassion than Iever thought I was going to know
in my life.
Speaker 1 (49:17):
And it opens your eyes up to a lot too.
You know, and having that, youknow be tapped into and, you
know, having that realizationlike, oh my gosh, I really do
have a really good intuition andI oh my gosh I've never felt so
passionate about anything likeI think I have now, or having
(49:38):
that, oh my gosh, I do have alot of this compassion I've been
holding and now I'm finallygiving it out Right, it just
probably brings about a wholedifferent dynamic to your life
as well and realize that if youdon't, if you aren't confident
in that, that's okay too.
Speaker 2 (49:53):
I mean, I had advocates in the room with me.
I hired an advocate and Irealized, you know, and some
people think, oh my gosh, thatmust cost so much money.
Was it an investment?
Yes, it was.
But if you know that you'regoing to pay somebody, you know,
let's say, at the time when Ihad my advocates, you know, you
know you pay 75 an hour orwhatever that number looks like.
(50:14):
Just know, though, that you'rethat's going to help you to get
the result that you need.
So, and I realized that that'sa finance.
But I had to figure out how tobudget all of that too, because
I in my mind, it was going towork and anything it took, it
was going to work.
There are resources out therethat that offer scholarship
money, that offer funds, that dothat.
(50:36):
You know state, state services,there's so much.
But you can't settle with theword no, you can't settle with
the rejection If they tell yougo find somewhere else because
there's going to be a resourcesomewhere else, you know.
So I, I, I really coach a lotof parents on that as well,
because you know they'll say, ohwell, they just told us no,
(50:57):
like make another call, findsomebody else.
Let's, you know, be the squeakywheel, and I don't like entering
that stage either.
You know I didn't want to bemean to people, or assertive.
You know, sometimes when youget assertive, people feel like
you're being rude or mean.
I was always worried about that.
I really started to not worryabout it, though, when I started
(51:18):
to see my son coming home fromschool crying every day and
going to school crying every day.
That was it for me.
You know, and I think that youknow, parentally, you enter that
stage of you know, I don't, Ijust can't care about hurting
other people's feelings rightnow.
Speaker 1 (51:36):
Right.
Well, especially, I think youknow, when you're seeing
somebody close to, that hitsyour heart, close to your heart,
like your child hurting, youknow, because a school system is
failing to deliver yes, whatthey were supposed to have
delivered, yeah, and that's thatwas heartbreaking for me too.
Speaker 2 (51:59):
I was devastated.
I was devastated and then I wasalmost a little mad at myself
because I trusted them Like Iwas almost felt like I trusted
this team, this educational team, to carry him.
So I did enter a stage where Ifelt a little upset at myself
too, you know but it wasreasonable reliance.
Speaker 1 (52:22):
Here, you know you was, you know, only reasonable
relianceiance.
You depended on them to do whatthey were supposed to do and I
think that's normal.
I think any parent, whether youhave a kid with autism or not,
anybody who sends their kids toschool, they're gonna reasonably
rely and hope for the best thattheir kid is going to learn and
(52:43):
be taken care of right in a waythat schools are supposed to
teach.
And, you know, handle your kidRight.
Speaker 2 (52:54):
Right, and to know that there was a person there.
He had a para, he had a paraprofessional with them from the
moment he walked in the door tothe end of the day.
So he had the support.
He had the support.
It was the other part thatwasn't being executed.
It was the.
You know.
Are we integrating him?
(53:16):
Are we really tracking thesegoals?
Are we taking the data points?
How are we structuring hiscurriculum based off of what's
written in his IEP?
It was all of that.
That.
That just wasn't happening.
And, um, and you know, here inArizona, each school receives a
(53:37):
different set of allocateddollars for special needs kids.
Um, and so I knew that theywere receiving a special amount
of money for Jason to attendthat school.
So for them to tell me thatthere wasn't that resource there
, I was like, well, hold on asecond, because there should be
allocated funds because hequalifies.
And they were shocked when Iasked that because most parents
(54:02):
don't know that.
And so they were shocked when Iasked it because I was well
aware, because I did theresearch and I also had
advocates to speak to about ittoo, so they were confirming I
was.
I was using other professionalsfor my to to back up the
information that I wasresearching and receiving.
So I I did.
By no means did I do this bymyself.
(54:25):
My husband and I have had ahuge support team over the years
and it took us years to findthe right, the right care team
as well, you know, um, butthat's that didn't happen
overnight either.
So I always tell parents don'tgive up, right, yeah, don't give
up.
Speaker 1 (54:43):
Well, nikki, you have been so inspirational, so
moving, and you know and Ireally hope everybody who's
listening to this and this isone thing I want to say is you
know from a person who is on theautism spectrum and it's so
easy for people to look down onpeople on the spectrum and think
(55:04):
of them as less than and havethese misconceptions about them,
and it's so easy for people tobe quick to judge.
Yeah, at the same time, peopledon't know what it took for us
to even function in our day today and I hope when people
listen to your story, nikki,people have a better
(55:27):
appreciation and understandingof what it was like for people
who are parents of kids withautism, hearing some of what
they had to go through, likehearing like your story and what
you had to go through and thefight and the persistence and
the never giving up, giving up,and no matter how many times you
(55:47):
guys got knocked down, it wasjust you kept standing up and
kept ready, kept ready to go andpull, pull the punches when you
needed to pull the punches.
Yeah, that's where you know.
And just hearing that story,hearing from other people who've
gone through stuff, and I knowthat it's so and people have a
lot of misconception.
But let me tell you, I hopethat everybody can learn one
thing it always helps whenpeople are understanding, can
(56:12):
give compassion, are not quickto judge yes, it's quick to help
.
Rather, and if you can't help,at least don't go and hurt.
It's so important that peopleyou know also, when you see a
family, when you have, when yousee parents with kids who are on
the autism spectrum, also notjudging those parents for being
(56:35):
bad parents or you know, likeyou know and making or being
making snap comments andjudgments.
Because the thing is and I hearabout this all the time, right
From people, I'm a therapist byprofession and I also hear, you
know, I heard stories like aboutthe kid family who had to get
(56:56):
off a plane because the kidneeded to eat a meal at a
certain time, and I remembersomeone messaged me and said see
, that's example of badparenting.
No, actually, that's not badparenting.
You can't force someone to eat,a child to eat, when they're
not going to eat.
You know and this is true ofanybody, I think, and I'm pretty
(57:17):
sure if any parent could chimein who listens to this who have
kids.
I don't have any kids, and Inever.
I never wanted to be a mom, sothat was a thing, for myself.
I never only thing I wanted toparent was a dog and I, you know
, I just feel like you know,even then, right, you know, when
(57:39):
people are not hungry, they'renot going to eat.
You know it just like, and.
But I feel like this is the.
We got to just be morecompassionate, reach out, help
one another, you know, becausethis is how we're going to
change the world and understandthis too.
People with autism are not lessthan, albeit just because their
journey and path looks a littledifferent than yours.
It doesn't mean that you knowthey're any less than you or any
(58:03):
better than you.
You know, it's just.
Our journeys are just differentin this maze of life.
Speaker 2 (58:09):
Yep, absolutely, and some of the most extraordinary
things I have learned, um havebeen from people with autism.
You know, I mean even speakingwith you, sonia, having you on
the show, like I have learned somuch perspective and dynamic
from you, um, as an adult, andthat's something that I take
very much to heart because Iknow that that's going to help
(58:30):
me to understand my son bettertoo.
You know, drayson, if you, ifyou take the time to look at
people's attributes, right, ifyou take the time to really look
at them and see them, you willfind some extraordinary things
about people.
Drayson is one of the mostextraordinary people I know and
(58:51):
I'm blessed because I feel likehe's the best parts of me.
He's the best part of me and Ithink, like I said, even
speaking with you, sonia, thereare so many things that you've
even opened my eyes to as anadult person on the spectrum,
because I don't know yet Ihaven't entered that stage with
Drayson, right, and thatperspective is so important for
(59:14):
me to hear because I know that Ican keep that in mind as he's
growing up and have a differentoutlook.
You know, we've we've gotten soconditioned to think inside the
box and I just my hope somedayis that people can be OK and
that becomes the new norm isthinking outside the box.
Speaker 1 (59:36):
That's really what I want for everyone.
That's exactly you know partlywhy I do what I do.
It's like for people like you,so like my book that's coming
out in 2025, you know, it's likefor people dedicated to people
like yourself.
You know are in it, in it towin it.
I say in it to win it right, youknow, you know who've been
(01:00:00):
touched by autism, why I writtenthat book, why I run these
marathons that I've run right,it is for people and once again,
you know a mile will be run inyour honor with the Chicago, new
York City marathon.
And I just feel, like you know,I'm a very spiritual person and
one thing you know I always getevery time I pray, is this
(01:00:23):
phrase always comes to my headthat God loves autism.
I always get it.
Speaker 2 (01:00:32):
I pray.
Speaker 1 (01:00:33):
So that's one thing.
I want to also end this withfolks is that God loves autism.
Thank you all for tuning in andplease like, like and subscribe
.
This is available on all audiopodcasts on the spectrum with
Sonia.
Please leave a review if you soshall feel inclined.
(01:00:55):
Of course, all reviews aregreat feedback.
All right, take care.
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