Welcome to Unlimited Parenting. This is a show
where we talk about what it's like to be parents
of children with disabilities. This series is...
Everyone's favorite. Everyone's favorite. No,
that's B -Y -O -T. Oh, okay. This is... This
is everyone's second favorite. This is everyone's
second favorite. IPUL, that's us, found it on
Facebook. So these are questions that I found
this month on Facebook that I thought would be
appropriate for us to answer together. Perfect.
So I am just going to shoot out a couple. I picked
some that I thought were really timely since
it is the summer and, you know, potentially parents
are getting their stuff ready for back to school.
I know I'm saying this and you have sacrilegious
of me. It's okay. Got to prepare. So the first
question I found is, how do I know if my child
qualifies for an IEP or a 504? And what is the
difference? That's a really good question. That's
one that we we get a lot in our office. And to
qualify for special education, Idaho, well, there's
three prongs that children have to meet to qualify.
And so if they don't qualify for that specialized
instruction, then that's where we start talking
about that 504 plan. And it can still offer some
help and support just in terms of its accommodations.
It's not going to be modifications to a student's
curriculum or the way that they're accessing
their material. So how do we know when the struggles
are enough to qualify? I think that that is what
I hear a lot is, well, how do we know if I need
like so if I'm not 100 percent sure, should I
just test for a 504 or would you what would you
say? Don't you think a lot of times too we will
hear, well, they're they're taking some data.
So I think I hear that a lot too when families
call. And I guess you got to kind of know where
you're at. And if your team is collecting data,
we never want to delay an evaluation because
we're taking data, because data is an evaluation
potentially, you know. So parents, I guess in
this instance, I usually recommend to families
to place a request in writing for an evaluation
for special education. Then that way, if the
student that's going to tell the family if the
student meets those three prongs and if they
don't meet those three prongs, then that's when
we know that a 504 plan may be that best route.
Yeah, that's what I was going to say is because
if you assess for a 504, you can only be found
eligible for a 504. However, if you assess for
an IEP. And then you're not found eligible for
an IEP. You could potentially still be found
eligible for a 504. Yeah. And some, you know,
Idaho being the local control state, each district
kind of has different procedures with how they
test. So some districts do want to do a comprehensive
evaluation for all students. Yeah, it kind of
does make sense to request that special education
evaluation and kind of go from there. Even if
they don't need all those supports, that's what
that evaluation will tell us. And then the 504
plan could be written from there. And that just
reminded me, just a quick plug, if you're an
educator on here listening to this. We did hear
that the State Department was going to potentially
give some mini grants that you could use to purchase.
Correct. Materials that you use for assessments,
right? Uh -huh, exactly. Yeah, and I don't know
if that's, I know that's coming through SESTA.
I don't, we heard about that at SEAP. That's
the Special Education Advisory Panel. I will
pull, I'll pull that information and we can attach
it in the comments. Okay, so if you're thinking
to yourself, well. What kind of assessments does
my school use? And then your school comes back
and says, well, you know, we're short on funding
or whatever the case may be. This could also
be something that you could potentially bring
to your school's awareness. Just make them aware
that this is another thing that's out there for
them to take advantage of. Yeah, because I think
sometimes that mini grant information just goes
to the superintendent or the director of special
education and maybe doesn't get disseminated
down. And so, yeah, we'll put that in there.
the caption but i think basically whenever you're
listening to this this summer just know that
if you have concerns about your child it's better
to just make sure you put that request in writing
always put it in writing that starts the timeline
right we can't as parents say i asked for that
and no one did anything if it wasn't in writing
that gives us yeah that gives us the ability
to say i asked for it at this point it's traceable
so always put in writing i don't think i have
the little sound bite anymore but remember we
had that sound bite of angela going if you didn't
put it in writing it didn't happen yeah and that's
true okay another question that i found is i'm
overwhelmed where do i even start And girl, if
you find any answer to that, you come on down
and tell me. Oh my gosh. I feel sometimes like
imposter syndrome when they call us because we
are the people we serve. You guys, we really
are. And we know what it's like to be overwhelmed.
And on any given day in this office, one of us
is overwhelmed. We try to take turns. Sometimes
it doesn't always work out that way. Sometimes
people jump the darn line. um you just gotten
your new diagnosis okay you could go back in
time and tell yourself like what would you start
with first because when i got jack's autism diagnosis
there are definitely some things that i would
have started with first yeah that i didn't because
i didn't know about them then so what would so
for example the first thing that i would have
done honestly is gone and picked up a book okay
Because I really see the value in going to a
group on Facebook and asking some questions.
But I really wish that I would have started with
peer -reviewed literature on how autism is different
than ADHD, on kind of what are some things to
know and expect, and then gone to a Facebook
group. So I kind of have a different perspective
because I started, I was given a book. And it
was... The A to Z of Angelman syndrome. And my
son has obviously Angelman syndrome. And it was,
looked like it was written, okay, he got his
diagnosis in 2010. This book was written in the
early 90s. It was black and white and everything
referenced mental retardation. And it was doom
and gloom. Not a good book to start with. I did
not want to start with that. I wish I had not
started with that book. I wish I had found the
Facebook group first. I wish I had seen other
Angelman children thriving, doing things that
that book showed me that they probably wouldn't
do. But I was able to join that community. So
for me, that community, it wasn't peer reviewed.
It was I needed to see what my life was going
to look like. But it's different. It's not there's
not a lot of literature on angel syndrome. There's
not a lot of studies. There's not all. And so
I needed that that personal connection. I wish
I had done it backwards. I don't know if that
it does make a lot of sense because I felt like
I was getting the. i was getting the inverse
i felt like i was getting more doom and gloom
from a facebook group than i was in a book okay
so i we're but we're saying the same thing we
need to find like i guess at the end of the day
what i would really recommend to anyone who's
overwhelmed with a new diagnosis is find where
it's not the doom and gloom because that's what
we were looking for on both of us exactly just
in different spots yep i think another thing
that i would definitely tell myself is that um
the systems take so much time yes absolutely
and I I would have I would have applied for Medicaid
sooner I really would have applied for Medicaid
sooner had I have known how much support You
know, like the Katie Beckett pathway to Medicaid,
how much support you get from children's developmental
disabilities, how much support you get from early
intervention. See, and I think in that respect,
Reese was so delayed and so medically complex
that those systems fell into place pretty naturally
for us. He had seizures. So we were already connected.
We very quickly got connected with Katie Beckett
with the. infant toddler program. So we were
really well connected, but I think it's because
his challenges were, they appeared and presented
differently. I was overwhelmed when we started
the school system. When we started, like I had
just wrapped my head around medical stuff to
then jump into a new system. And we know those
systems don't talk to each other. The healthcare
and the education, they... They don't even look
at each other. They're in different corners.
They are. They try, though. They really do try.
So I guess I wish I had known more of that kind
of stuff. Well, let me put it this way. I am
a brand new parent who just got an Angelman diagnosis.
My kid is five. What would you say to me? That's
weird that I got the diagnosis that late. Yeah.
First, nowadays, it kind of is. But I would say
welcome. Oh, see, that's so sweet. And I always
like to share a picture of my kid. And you know,
the picture that I like to share is the picture
of him on the mountain because he climbed the
mountain, even though we were told that he wasn't
going to walk and he's not going to talk and
he's, you know, take him home and love him. He
runs, he climbs, he walked when he was almost
five. You know, it took him a little bit longer.
But I like to welcome people and I like to tell
them it's not going to be rainbows and unicorns
because I'm not going to give that false sense
of hope. But it's also not going to be a death
sentence. And that's what it felt like when we
were given his diagnosis. It was a death sentence,
kind of like, oh. And it's I guess there is that
place for grieving. So I would make sure to tell
someone that got a diagnosis at five grieve because
you have to grieve what you're not going to have.
And then you just figure it out. That's such
a good point, though, because autism, obviously
not a death sentence. But I remember when I got
when I found that diagnosis, when he got that
diagnosis and I heard about it, I just like sat
in the car and cried. Which is so... It almost
feels weird looking back on it now because obviously
everything is fine, but hindsight is 20 -20.
Yeah, because you're... Because I remember thinking,
oh, is he not going to do all the things that
I loved to do? So it was almost like... grieving
what I thought could happen. Oh, 100%. Like,
that's what I grieved. I grieved, like, oh, he's
not going to play football. Oh, he's not going
to get married. Because football is such a huge
thing in your family. It is. And it's stupid.
Guess what? He still played football. It's not
stupid because I was wondering if Jack would
ever learn how to read. Right. And that's what's
important to me. So I was like, well, he has
football reading. You can see where we're coming
from. Anywho. But no, that's. Yeah, we kind of
had to grieve some of that. So don't find the
doom and gloom. Yeah. And find your people. Find
your people. And what was the other one? Grieve.
Grieve. Yeah. Find your people and grieve. Yeah.
And when you're. It gets better from there. Exactly.
It absolutely gets better. Like that was rock
bottom. Yeah. You can't go much. Lower than that.
And so then you kind of start crawling your way
out. And then don't beat yourself up when you
have bad moments. Yeah. No. Because you're going
to. Yeah. You're going to. Yeah. And I think
that's what's really powerful about making sure
that you have support in your community, too,
because those bad days, you need that support
to say, hey, not every day is going to be like
this. You need to be able to hear that. Because
you could get really stuck in your own head.
You can. And then you can start to take that
out on your kids. Yeah. Not that we would know,
but it's just something I heard one time. Okay.
So our final question is a little more lighthearted.
Okay. These groups. How, and honestly, whoever
asked this question, bless you, because I love
it so much because this literally sounds like
something I have asked at some point in my life.
How do I advocate for my child without being
labeled that parent? Isn't that the best question?
Oh my gosh, that's the struggle that we all face,
right? Because we don't want to be that parent
that they see coming. Or that parent who's been
asked not to step foot on school property anymore.
Or has happened. Been kicked out of a therapy
or like, you know, let go. Discharged from the
clinic kind of a thing. Discharged from hospital
systems. I mean, there's been parents. Oh, shoot.
Have been completely discharged from systems.
And then your children are affected. But then
you feel like I'm just trying to advocate for
what's best for my kids. It's really. It's a
fine line. And I guess the line is almost invisible.
It's almost invisible. I try to really bring
in my sons, whoever, whether it is therapists,
teachers, doctors. I value them as collaborators
on his team. I value their opinion. And at the
same time, I try to get them to value mine as
well. Yes. I think that we have to be collaborative.
And I think collaboration goes a long way in
these systems. When you are at the table and
you are not combative, but you are listening
and offering solutions and feedback, but you
aren't yelling. And that's, I guess it's hard,
you know, when we get our mama bear time to not.
But I yeah, I like to think of three things.
Number one, Mark Perchin wrote a really great
book. Again, a book. I'm sorry. But if you ever
have time or you want me to just give you a quick
synopsis, it's essentially how to have those
difficult conversations. And it's from someone
who was a mediator as his full time job. And
we were lucky enough to have a symposium conference
with him there. And he led a really powerful
session that a lot of people took a lot from.
Yeah. And I just wish that we could send every
parent to talk to him and go through. I don't
remember who was presenting with him. I am so
sorry. But the both of them were so fantastic.
The dress, remember? Oh, my God. And every time
I see a dress like that on Sheen, I'm like, this
is the dress. Sorry. No, no. I agree, though,
because he did have really power. The gem. Are
you going to talk about the gem? Talk about the
gem. I just loved. And we actually have stole
this from him. Because it was so powerful. At
the end of the day, he asked us to. hold an imaginary
gem in our hand and not let our neighbor see
it and not let anyone take that and hold that
close to us. And that was kind of a representation
of our child. And that is who we hold close.
And when we go into an IEP meeting, we have this
gem and this gem is who we are there to protect.
And so by showing the team this gem, showing
them, you know, opening your hands and showing
them, this is what I'm trying to protect. it
kind of gives that team a visual representation
of why you are so passionate as a parent and
why you are, you know, maybe you're advocating
and you're advocating a little too strong sometimes
because you're holding this gem. Your pride and
joy. Your pride and joy, right? You worked so
hard on this. After all these years, you know,
you... And most times you made it yourself and,
oh. Right? And it's under pressure and it just,
everything that a gem... kind of encapsulates
can very be can very much be our children, too.
And so I guess how I have used that in an IEP
meeting is sometimes I take my son doesn't go
to his IEP meetings. He's a little. It's a little
overwhelming for him. It's not his least restrictive
environment. Yeah. But I take a picture of him
and I plop it on the table. And I learned that
from Mark because he is the reason that we are
there. He is the reason that we are at this IEP
meeting. And it centers it around him. And so
I don't know. I don't want to be that parent.
But I agree that Mark had some powerful, powerful
messages about centering and bringing it back
to why. teams are together and that's what we
mean when we say that we are the parents that
we serve but we also have extensive professional
development this is what we mean is that we've
been we go to osep we go to these meetings where
we get this and then our job is to bring it back
to you via trainings or a podcast or when you
give us a call and you say well What do I do
now? Right. This is when we pull from that well
of information. And I would tell you that we
kind of flipped that script. And when we present
to educators, we. Last year at the Transition
Institute, every educator got a ring pop on their
chair to represent the gems that are our children.
And we tried to use that as a visual in the opening
of our presentation to talk to them about, you
know, these are our gemstones. Please understand
that when we come and we are so passionate at
these meetings, this is the reason why. Passionate.
These are our kids. Passionate also can sometimes
present as feisty. Passionate can sometimes present
as defensive. And we have to, as parents, really...
It's hard. Take a breath. Yeah. Bring the candy.
It's hard. So what are your other two? Sorry.
No, no. My other two are... I guess my second
one is I would like to do for them what I hope
that they do for me, which is pretend that I
have just spent three hours on hold with Medicaid.
That's how I go into any of these meetings. I'm
like, I'm going to pretend that this person is
absolutely exasperated, that this is the end
of their day. This is the last thing that they
have to do. And then that always automatically
makes me want to give them extra grace. Yeah.
So I try to do that. It doesn't always work,
but that's something that has worked for me in
the past. And then the third thing is, Melissa's
going to laugh because this is a horse I'm going
to ride until forever. Hanlon's razor, baby girl,
is never going to die, which essentially... Be
on your gravestone. It will. Please should. That's
the eulogy I want read, which essentially means
that, you know... But I'm older, so I'll die
first. I can't help you out with that. Fine,
I'll put it on your head so I can read it to
you every day. Essentially, it's saying that,
you know, don't attribute to malice that which
can be attributed to ignorance. Right. So don't
assume that when someone says something that
they mean it the way that you automatically think.
Right. So. If someone bumps into me in the hall
on the way to class, I'm not like, oh, my gosh,
Jessica hates me. Right. And that's hard for
me because I am such a black and white thinker
that that has really put so many shades of gray
into my ability to see people. And then I always
try to think, you know, like, what is the school?
What is this IEP team like benefiting from when
they do it this way? Right. I like that. And
I just have to try to like see it from their
perspective. And obviously I'm always going to
do what's best for my child, but I never want
to go in. Guns blazing. And I have had some rough
experiences with educators. It hasn't been easy,
but even now, even though I've been with this
team for a while, I still always go in like,
okay, he's had a bad day. He's going to be a
little aggressive, but that's because these other
things have happened to him and he's got this
million other kids on his caseload and blah,
blah. And then I really have still come out with
it, getting everything that I thought would benefit
my child and what I thought that my child would
need without having to be defensive or getting
upset. I've just remained very calm. And I'm
very solution driven. Yep. And I think that that
is another really big piece of advice to give
is that, you know, what do you want? But then
what's your solution? So, for instance, I'm in
a very small district. The district doesn't have
a ton of money. I'm going to ask for behavioral
one to one support. I better come with a plan
on how I think that school could do it, even
though I recognize that that's not my job. But
I'm being a part of the team and I'm helping
to come with a solution. And that's being a good
team member. Yeah. Right. And that you can bounce
ideas off of each other. And it's OK to say,
oh, can we try this? And for the team to say,
no, that's not going to work. But you have an
explanation to why. Yes. That's what's so critical,
I think, is when you are able to have these discussions
openly and honestly, that transparency. That's
what that's the word I'm looking for is so huge
with teams, because that is to me. That's why
I trust my son's team so much. We've been able
to have transparent conversations. We've been
able to be really honest with each other. And
there's been times where they've said, no, that's
not going to work. And we've gone back to the
drawing board. But that's just it is always to
have those solutions. And we can help maybe sometimes
with those solutions. We talk to a lot of different
families. And a lot of different districts. Idaho
is not just Ada County. Exactly. And so there's
a lot of districts that have to think outside
of the box. Yeah. Well, the last thing I would
do is I just like to say thank you. That is so
good. I like to acknowledge, you know, they put
time and effort into this, assuming that they
did. Now, there may be times where you go and
there's nothing. That's a different story. Right.
There are times that this is on their lunch break.
Yeah. And thank you for that. Thank you for helping
to support my kid. Yeah. Because then you have
to go back to the classroom hungry. And I don't
operate well. No. That's another good reason
to bring snacks. Yes. I do like to take snacks.
Nobody wants. Oh, and if there's anything that
we've learned recently, if you're able, bring
your child. If your child is able to help advocate,
it is so hard to say no to a child. Yep. We have
had some powerful stories of advocacy lately
that wouldn't have gone the way that they did
if the students had not advocated for themselves.
It's huge. Yeah. And if your student can't be
there, that's why that picture comes in handy.
So at the end of the day, that student is at
the center of the table. The student is at the
center. Yeah. Thank you so much, everyone out
there for listening in and know that if you are
in Idaho or planning on moving to Idaho and have
questions on systems or services for children
with disabilities. please consider reaching out
to us on our website at iPullIdaho, that's I
-P -U -L -Idaho .org, or by calling us at 208
-342 -5884. Be sure to tune in next time. Until
then, this has been Unlimited Parenting. Thanks
for listening!