Episode Transcript
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Speaker 1 (00:02):
Okay, welcome to
Common Sense Parenting with Pam.
I'm so excited because today Ihave a guest who was on maybe
was it a month ago, nancy, Ithink so.
I think so, okay, nancy Perkinsis a special needs advocate and
just so knowledgeable and soskilled in what she does, and
(00:23):
we're excited because she wrotean ebook that I think every
parent who has to deal with theschool systems and IEPs and all
that good stuff and advocatingfor the children need to grab a
copy of, because we know I havepersonal experience, as you do
we know how challenging that canbe sometimes.
So, nancy, why don't you startoff by telling us the title of
(00:44):
the book and what it means?
Speaker 2 (00:47):
So the title of the
book is Afraid to Ask, ashamed
to Fight, and I was playingaround with different titles and
I came up with that one becauseafraid to ask.
It can have, I believe,multiple meanings.
(01:09):
You can be afraid to askbecause, deep in your heart, you
know that something is going onand you just it's too painful
to face.
It can also be that you'reafraid that you're going to be
that districts will gaslight you, which is a very genuine fear.
(01:32):
And gaslighting takes the formof my least favorite sentence in
the English language wait andsee, which does absolutely
nothing.
It's wait and see for the childto fail, ashamed to fight
District administrators.
(01:53):
There are some very good ones,very helpful ones, and there are
others who are just, they'rejust bullies.
There is no, there is no otherway to put it.
They are guarding the pursestrings as if it's their own
bank account and their own money, and they are, granted, they're
(02:13):
under pressure not to spend.
So I have to say that.
But they can.
They get very, some of them getvery forceful and very
possessive about oh well, wehave to.
You know, we can't spend themoney, we can't spend the money.
They also put pressure on theirstaff on the teachers general ed
(02:34):
and special ed not to tell theparents anything so that you can
go to a parent can go to herchild's teacher and say, oh, do
you think my child is havingtrouble with reading?
And the teacher might just gointo the wait and see she'll
catch up.
Blah, blah, blah, that kind ofthing.
(02:55):
He is stuck in between a rockand a hard place that they have
to obey their supervisorsbecause their job would be at
risk otherwise.
But I so that's the meaning ofthe title of the book, and I
have been reading about theteachers who are leaving the
(03:17):
field, and one reason that thatthis is general ed and special
ed is that they don't getsupport, and you know, having to
lie to parents is a huge lackof support.
So that's what led me to writethe book, and also because many
(03:37):
parents cannot afford to hire aspecial education advocate.
They can't afford to hire themprivately, and so the book is a
less expensive option.
Speaker 1 (03:48):
Well, you know what I
think is brilliant about the
title, though, nancy, youexplained some of the reasonings
, but I know from experience andworking with other parents who
have had children with differentabilities and had to go talk to
the school system.
A lot of times they're afraidto ask because they don't know
what to ask, or they're afraidthey're going to look stupid or
uneducated, or maybe they're notvery educated to begin with,
(04:12):
and then they feel like peopleare going to look down on them
if they ask those questions orif they challenge anything, and
so they just sit and listen towhat's being told to them
instead of asking thoseimportant questions and stepping
up to advocate for the child.
And then, you're right, schoolsystems will try to buck having
(04:34):
to pay for it, and I think Ishared that with you.
An experience that my sisterhad when she was a teacher and
the administrator said don'ttell the parent this.
That they they're entitled tothis benefit that we have to pay
for.
Don't tell the parent.
Well, of course my sister toldthe parent later, because she's
like I have a child with specialneeds.
Why would I not tell a parentwhat their child is entitled to?
(04:56):
Like?
That was bizarre to her.
So, no, we're not painting allof the schools and all the
teachers and administrators thisway.
However, that is a reality.
That's a reality, and soparents need to be aware of that
and they need to know how theycan step up and that they have
the right to ask those questions, correct?
Speaker 2 (05:18):
Absolutely yeah.
Speaker 1 (05:19):
Yeah, and that's why
you wrote that book to let them
know that.
Speaker 2 (05:22):
And that's why you
wrote that book to let them know
that, yeah, yeah, and also they, they don't, honestly, they
don't have to hire an advocate.
I mean they, they, you knowthere might be certain I'm sorry
I didn't myself, I was busyplaying super woman and and so
for me that was a bad idea notto hire an advocate.
But they might, they, theymight read the book and think
(05:45):
you know what.
I think I'll try to do thismyself, because I give them the
book is not, it's not a salespitch at all, not at all.
And in fact I list freeresources and I tell them go
online.
And I also tell them there'ssomething called a procedural
(06:06):
safeguards notice from.
It's a state guide from agesthree through 21.
And that procedural safeguardsnotice, pam, is a goldmine.
It's like to me it's theequivalent of getting a pair of
diamond earrings.
Wow, it really is that you lookthrough it and it will explain
(06:28):
to you what your rights are.
It is not.
Is it user-friendly?
Well, I wouldn't call it that.
You have to sit with it.
It's not like reading a funnovel, it's not beach reading.
You have to sit with it and sitwith your highlighter, sit with
your little post-it notes andunderline it, and if you're one
(06:48):
of my colleagues had said thisif your procedural safeguards
notice looks tattered and wornlike the dog, ate part of it,
that you have made very good useof it.
If it looks pristine, no, thatno, you got to get in there.
Speaker 1 (07:05):
So I think, well,
nancy, what's going to happen is
people are going to read thisbook, right, and they're going
to go yeah, I think I can dothis myself or they're going to
quickly go.
Oh, holy cow, I need to hire anadvocate right away because I
cannot handle, I can't, and youknow, for many reasons, right,
but it's a lot.
People don't understand all thenuances and all the policies
(07:27):
and procedures and things thatare involved, and it's.
It's not just this cut anddried, simple process.
And unless you know what you'resupposed to be doing and what
rights you have and that yourchild has, sometimes you just
get steamrolled, Right, oh yeah,because they think, well, she
doesn't know what she's talkingabout, we're not going to tell
her and then everything's good.
(07:48):
So there are some cases wheremaybe a parent could handle it,
maybe they do educate themselves, they read that procedure thing
and they know what their rightsare, but other times they're
going to go like, whoa, where'sNancy?
You know, and the beauty of itis that, for people who heard
our last podcast, you can workfrom, zoom all over the country.
(08:11):
Yeah, so you don't have tophysically be present somewhere.
That, with the background thatyou have and the skills and
knowledge.
And let's stop there for aminute for people who didn't
listen to our last podcast.
Tell them a little bit aboutyour background so they
understand where you're comingfrom.
Speaker 2 (08:26):
I am a New York State
licensed master level social
worker and I went to social workschool at Adelphi University,
which is a local university.
I have 11 and a half yearsworking.
I worked in a special edpreschool as a special education
social worker.
I worked in a community agencyas the director of autism
(08:51):
services and we had the childrenon the spectrum.
We had kind of a.
We had a mixed group.
We had children that had veryhigh support needs and would
elope they meaning they'd escapefrom their houses and it was
which is really traumatic and wehad children with lower support
(09:13):
needs.
But I've worked in differentpopulations as well.
When I was a social work internI worked in a counseling agency
with clients from the criminaljustice system, many of whom had
gotten DUIs and were mandatedto come in for counseling, and I
(09:36):
decided I didn't want to stayin that drug alcohol field.
I just I wanted to switch.
So I have what you would call avaried background.
I've also worked in foster careand when I was working this is
a long time ago when I wasworking in foster care, we one
of the local cable news stations.
(09:56):
They wanted to feature thechildren who were freed for
adoption, so there were threenonverbal kids and they were.
They had been freed foradoption and they needed to
interview one of the caseworkers.
So that's how I got chosen.
So I still have it.
I didn't even have cable at thetime.
My friend, it was on HBO, itwas on cable.
(10:19):
We didn't have it, so a friendvideotaped it for us so I still
have it.
It's actually on a videotape incombination with my family's
home movies.
Speaker 1 (10:33):
Oh cool.
And also you have personalexperience, if you want to touch
on that a little bit.
Speaker 2 (10:39):
Yes, I do.
My son has.
He was diagnosed with autismspectrum disorder when he was
not quite four and he has lowsupport needs.
Right now he is.
He works for my husband in myhusband's business and and he's
very, he's still.
(10:59):
He's grown.
He hides his light under abushel.
He thinks that he can't do acertain thing and I say to him
what do you mean?
You can't do it.
This is beautiful.
So he's still developing, butautism is very, it's very
misunderstood.
People will ask me, people willask me questions and I'll say,
(11:26):
no, that's not really true.
That's not the case with him.
Very it's very misunderstood.
And there are unfortunately,generally speaking, in school
districts which is anotherreason why parents are afraid to
ask is that parents oftypically developing children
(11:47):
are deathly afraid that the kidswith special needs are.
They're stealing all theresources and my kid won't get
anything.
Speaker 1 (11:54):
Well, I'll tell you
what that's.
That's a little bit concerningthat they think that but,
considering their children, aregetting all the resources
already.
But what I like about the factthat you have a son, that you
have walked the walk, you'vetalked the talk, you've
experienced it on a daily basis.
So when you are working with aparent who has a child who needs
(12:18):
some advocacy or needs somehelp, you understand what that
is to come from a parentperspective, because that's a
very emotional place to comefrom.
When it's your child and you'retrying to advocate for your
child and you're running upagainst people telling you, no,
we can't, no, you're notentitled I mean you know,
knowing full well that youprobably are they're trying to
(12:39):
stop you from getting it thefact that you are that parent
and you can understand how thatparent is feeling in that moment
.
Right.
So there's this connectionthere that happens because
you're looking at that parentand go I've got you.
I know how this feels.
I know the tears you've cried.
I know the tears you've cried.
(13:02):
I know the times you've smiledand been happy for progress your
child has made.
I know the emotions you gothrough on a daily basis dealing
with everything you deal withand that's powerful, that's very
powerful that you can walkalongside that parent knowing
exactly what they're feeling.
So I love it.
I love the fact that you havethat and I think that's a,
that's like an extra gold staron your forehead.
It's it's more than just beinga social worker or an advocate.
(13:22):
Anybody can learn that and theycan read books and they can put
it into practice.
But when you have that extra,that extra piece, that you have
walked that path and you canhelp them along their path,
that's just amazing to me.
Thank you.
That's like the cherry on topof the sundae, thank you.
And add the whipped cream on topof it too.
(13:43):
So let's get into this with theschool districts, because, yeah
, I've run up across this myselfpersonally.
But so why isn't schooldistrict telling you what you
need to know in order to helpyour child?
Speaker 2 (14:00):
There are two reasons
for it.
One reason is that and if wewant to judge people favorably
and I do try to do that onereason is that an administrator,
even though they'readministrators, they may not be
fully aware of what's available.
(14:21):
They may and probably have beenmisinformed by special
education law, because ifsomething is repeated often
enough, nobody questions it, itbecomes carved in stone.
It's like oh oh well, that'sthe truth.
So that if I'm trying to thinkof an example, example, so not
(14:50):
that they would say this, butthere are, there had been people
who.
It's less so today, but it wasvery problematic several years
ago If, if enough people hadsaid to a parent oh well, you
don't want that your child is,is being going to be labeled.
Well, that's another reason.
You know that they're afraid toask, but getting back to with
the schools, they again, theymight not be informed.
(15:13):
And the other reason, which Imentioned a few minutes ago, is
money, because special educationservices, they are more
expensive.
There are a lot of kids withdyslexia and to hire a certified
individual to teach them how toread, based on the science of
(15:33):
reading, is that that'sexpensive, that that's very
expensive.
So there's well, you know, ifwe don't have to spend outside
money, and we'll, you know,we'll just keep give them
academic intervention support,that'll be fine.
We'll have no accountability.
So the two reasons one, lack ofbeing informed and two, money.
Speaker 1 (15:56):
And it's a shame that
those issues are there to have
to deal with.
And you can understand in a waywhere an administrator, who has
all these responsibilities forall everything in the school,
could maybe be unaware, but atthe same time, that's their job
and there should be somebody inthat school district or in that
(16:19):
school that is assigned to knowthe laws and what the rights are
, instead of just fumbling theirway through it.
Funding, we can understand,obviously.
I mean, you know that's life.
However, when your child hasneeds, by law the school system
has to provide it, and peopledon't understand that and so
(16:42):
they'll take the wait and seeanswer from teachers or from
administrators not knowing.
Well, no, you can push this.
I mean, I have a friend whosued the school system years ago
because they were playing thesegames with her and she's like
no, absolutely not.
And the minute she lawyered up,guess where the money all of a
sudden appeared.
Ok, yeah, not that everybodyneeds to lawyer up, but she had
(17:05):
had enough.
She went, she went through theprocesses, through the steps,
did everything she was supposedto do as a parent, and then had
enough because they kept tryingto roadblock her and she's like
fine, that's your stance, I'llget a lawyer and you can talk to
my lawyer and all of a sudden,miraculously, money appeared and
(17:29):
services appeared.
Speaker 2 (17:31):
Right, of course, two
things about lawyers and I see
this on Facebook all the timePeople will say my child isn't
getting services.
Who can recommend a lawyer tome?
That's not the first place thatyou go.
And if, if a lawyer says, I'llhelp you for $7,000, which is
(17:52):
what they say minimally evenmore, no, you don't want that,
because what you want to do isyou want to keep as good a
relationship with the districtas you possibly can.
And so if you go let's say yougo in with a lawyer they have to
bring their lawyer in, whichmeans they're paying their
lawyer, and frankly, I'd rathersee your child get the services
(18:15):
and have the money spent thatway than having them pay their
lawyers.
It's just exactly, and also andit makes things it makes things
more hostile.
That's the first thing.
Number two the lawyers.
By and large, they're notsupposed to go into the IEP
meetings.
They're really there for dueprocess.
If you are suing your districtfor a non-public school
(18:38):
placement, then you want to goto the lawyers, and that's not.
I stay out of that and I wouldrefer a family to a lawyer.
That I tell parents.
If you're going to do that, youreally have to have a very
strong stomach because, one,it's time consuming, very time
consuming, and two, it'll eatyour bank account alive.
(19:01):
It's just and it goes, and also, it goes on and on.
And the third thing is that theschool districts, many of them,
have deep pockets.
So even if you prevail, theycould say, well, I'm appealing
this, and they could win.
Yeah.
Speaker 1 (19:17):
Yeah, your best bet
is to try to work with the
schools, try to do what you canget an advocate, do whatever you
need to do there, but there aretimes when they need to get
their bell rung a little bit, Iguess, and that's when the
lawyers step in.
But when you talked about don'tbring your lawyer to the IEP
meeting, should your child beallowed to attend their own IEP
(19:41):
meeting?
Speaker 2 (19:42):
Well, this is that's
Well, that's interesting.
By law, once children turn aminimal age of 16 and probably
even younger, 14, you shouldstart talking about life after
high school, whether it'scollege, whether it's employment
, whether it's a day program forthe child, and they should be
(20:07):
included at that point.
Now you can.
My child only went to hismeeting once because he actually
he was in high school and hesaid, mom, I want to go to the
meeting because I want to changemy math class.
I said, okay, there are parentswho have brought their younger
kids to the meetings, but whatthey do is they'll do a video
(20:31):
and they'll introduce theirchild by video.
Or their child will havewritten a letter saying this is
how I feel.
Or the child say seven or eight, comes in for 15 minutes or so
and then the grandparents takethe child out to McDonald's.
So, it's really when they'reunder 14, it's really it's up to
(20:55):
the parent In certain cases.
I wouldn't bring a child mychild when he was little, when
he was like seven or eight.
He couldn't, he wouldn't havebeen able to attend.
He would have been like hewould have been all over the
place.
He couldn't do it till he waslike seven or eight.
He couldn't, he wouldn't havebeen able to attend, he would
have been like he would havebeen all over the place.
He couldn't do it until he wasolder.
Speaker 1 (21:10):
But I like the idea
of if the parent feels
comfortable that the child couldmake it through the IEP, or
even like part of it, like yousaid, at least expressing how
they feel through a video orthrough a letter.
You're talking about a personand what is going to happen for
this person or not happen forthis person, and to the level
that they can understand that.
(21:31):
I think that's important thatthey're involved in those
decisions that are impactingthem and could have an impact
for their entire life, right?
So I think it's a cool thing ifpeople can do it and if they
feel comfortable with theirchildren doing it.
When they're younger, andespecially as they're older,
like you said, these decisionsthat they're being made are
(21:52):
impacting them after they're outof school, whether they go to
college, trade school,employment day program, whatever
it is.
They have a right to expresshow they feel and what they want
or need, and I think that'simportant.
And I know let's step back fora minute.
I know, with my son anddaughter-in-law, I was in an IEP
(22:13):
meeting for my granddaughterand we talked about this briefly
in the other episode, but Iwant to reiterate this again
Don't be afraid to say could youplease explain what you're
saying.
Don't be afraid to say could youplease explain what you're
saying, because they throw outall these acronyms you have.
First of all, it's intimidating.
You walk in a room, you haveall these people sitting around
looking at you and it's nervewracking at first.
(22:36):
And then they start spittingout all these acronyms that they
all understand and I remembergoing stop.
You need to tell them exactlywhat you need.
I just basically said you'rebasically speaking the foreign
language here.
Could you please explain to myson and daughter what you mean
by all of this?
And they were very kind aboutit, they were great.
(22:56):
They just they do this so much.
They just forget, right it'sjust normal for them to do that.
So don't be afraid to call themon it and go.
Excuse me, I don't understandwhat you're saying and don't
worry about it making you looklike you're stupid or uneducated
.
I didn't care.
I was like whoa, back it upLike you need to explain this so
they can make an informeddecision for their child and not
(23:18):
just agree because they'reintimidated by all these people
around the table looking at you.
Right, it's important, it'simportant, it's important.
Well, how can people find yourbook?
Now, we'll put a link in theshow notes so people can
definitely find it.
It's an ebook, so they candownload it right away.
Yes, let me just tell you Idownloaded the computer, but
(23:39):
download it to the phone.
If people would download it totheir phone that they have this
handy, that when they're in anIEP meeting and they're
preparing for an IEP meeting,they can scroll down and go, oh,
I need to ask about this or oh,this is a good question I need
to ask.
So in your book, do you have,do you provide I'm assuming you
(24:01):
do a list of questions thatshould be asked during meetings?
Speaker 2 (24:08):
That's very
interesting, I don't, you know,
I don't think that I didspecifically, I think let me go
back to.
I'm going to go back to thebook now.
Speaker 1 (24:22):
If you didn't do it
in this version, you can do it
in the next one.
Speaker 2 (24:25):
You know what?
It's interesting that youshould say that, yeah, I'm
already thinking about the nextbook.
That's a very interestingquestion.
I was more general and I wasalso pointing out pitfalls.
Speaker 1 (24:42):
Good.
Speaker 2 (24:43):
Danger zone ahead.
Good pitfalls, danger zoneahead.
One of the things a very, verybig pitfall is children are
getting have been suspended.
For of course we want to keepthe school safe and of course
you know if there, if a child is, if there's a major tantrum
(25:08):
going on, we want to be able tohandle it.
But I can tell you that I, afew years ago, I had a child
suspended, middle schooler, withadhd.
He walked up to this, the umschool water fountain and
instead of drinking from it, hewas washing his hands from it
and that was suspension worthyare you serious?
Speaker 1 (25:29):
oh, I'm serious.
Speaker 2 (25:29):
I'm completely
suspended him for washing his
hands in the fountain I mean itwas the wrong thing to do, but
all you had to tell him was no,we need you know.
That's not.
The fountain is not for washingyour hand like go, you know, go
to the boys room, oh yeah itsounded to me like they were
looking for a reason to suspendhim.
Speaker 1 (25:47):
Yeah, yeah, I mean in
some cases let's get real the
teachers are annoyed and they'redon't have to deal with these
kids, so it's easier to go.
Oh, he washed his hands in thefountain.
He's out for a couple of days,I'll get a break.
I mean, seriously, that'sridiculous to suspend a child
for something like that.
I'm sure you have all kinds ofstories.
Now tell people how they canfind your website.
Speaker 2 (26:08):
So my website is the
site.
It's wwwspecialneedspronet, andwhen, when you click on it, you
go to, it would be the pulldown menu and you click on ebook
.
And I did what Amazon does withtheir books you can read the
(26:29):
first three pages as a preview.
Speaker 1 (26:31):
Perfect, Now that's
awesome.
That's awesome.
I'll also put.
So I'll put your website inthere and also just put the link
directly to the book so thatthey can easily access it.
But we want people to educatethemselves to that.
There are advocates out therethat do what you do to help them
navigate this.
This is not an easy thing tonavigate through all the time
(26:54):
and sometimes you know it's likeyou need a roadmap, you need a
driver, you need someone to kindof tell you which way to go,
and it's great that you're thereand you do it.
And I applaud you for what youdo because so many people need
it.
So many people need it.
And I applaud you for what youdo because so many people need
it.
So many people need it.
Thank you All right, what finalmessage do you want to leave
with the listeners?
Speaker 2 (27:13):
This is suspensions
which I just mentioned are
increasing to everybodylistening.
If you get a phone call fromyour school saying come and pick
up your child and that calldidn't come from the school
nurse saying that your child hasa bad cough or seems like he
(27:35):
has a fever, if you didn't getthat kind of call, you sit on
the other end.
If they say, oh, come and pickup your child, he seems a little
unhappy at school.
Today has nothing to do withphysical illness, that's a
suspension and they need thatmust be put in writing and it
can get.
(27:56):
It can get very tricky becausethe school they can act.
They can act like bullies andthey often do.
But you have to be firm withthem and if you go to school and
pick them up, say to them okay,now this needs to be recorded
as a suspension and then put itin an email.
Follow up with that phone callthat you get, because the phone
(28:19):
call saying pick him up becausehe's not doing his homework, no,
Ridiculous, Ridiculous.
Speaker 1 (28:26):
There we go.
There's another.
They're trying to get rid ofhim or her for a couple of days.
That's no, that's good advice.
So parents need to.
If you're called for asuspension or you're called for
something other than likethey're sick, like the nurse is
calling but he's unhappy, he'snot doing his stuff, Document
that as a suspension.
Follow up with the school withan email.
Um, keep track record and nancy.
(28:48):
You bring up a good point.
Speaker 2 (28:49):
We'll wrap this
document document document yep,
all the time, all the time youcan't do email emails, phone
conversations.
Speaker 1 (28:59):
If you get off the
phone with the teacher, you
start writing notes downimmediately date, time, what
happened, who was present,definitely, and what happened.
You know what was the outcomeConstantly.
Keep a running record of that.
That's valuable information,valuable.
Well, thank you for being hereagain today.
I'm so excited that you're hereand that you are doing what
you're doing and you've got thisbook out that's going to help
(29:21):
parents and just keep up thegood work, girl.
Keep it up.
Speaker 2 (29:25):
Thank you, thanks,
pam, all right, you take care.
Thanks, take care All rightStay home.
Okay.