Welcome to Unlimited Parenting, where we discuss having children with disabilities or special
health care needs.
I'm your host, Allison, and with me today are Sarah and Melissa.
And I am extra excited today because this is not your normal episode.
Today is a special edition bonus feature, if you will, and I am joined by some of my
team to share our whys and what brought us here to Idaho Parents Unlimited.
But before I open up the floor to you ladies for discussion, I just want to add to make
sure our listeners know that there are five parent education coordinators here at Idaho
Parents Unlimited.
Rosario could not be here today and neither could Amanda because Amanda just had a baby.
Shout out to Amanda and her happy baby.
So a little bit about them real quick.
They are both bilingual parent education coordinators.
Rosario has been here since so long we've lost count.
She just celebrated 12th, 13th anniversary?
No, that was Candace.
Oh my gosh, our bookkeeper.
So Rosario has been here even longer.
So probably 13, 14, 15.
I believe it's up there.
Rosario has been here a while.
She's been here for a very long time.
Yes.
She knows the stuff and the things.
And Amanda's been here for a little over a year and she also does some social media stuff
a little bit on the side for us.
So she dabbles.
The people that are in the room with me right now are the three main people that you would
get on the phone if you called us.
Hence all of us collecting in this room today to talk to you so that you know a little bit
about when you call, who are you talking to?
Are we parents?
What are our credentials?
How do we know the stuff?
Who wants to go first?
Do you want me to eenie meenie miney mow it?
Yeah.
I mean, I could go first.
Sarah, you go first.
I've been here since September of 2016.
Is that right?
Yeah.
We weren't here.
It's been since 2016, September 20.
Yeah.
So I'm in my six and a half years here.
Wow.
So yeah, if you do the math, seven years in September.
Wow.
It really flies, guys.
Why are you here?
Well, not existentially and not literally like in this room.
But question, Allison.
No, I have three children.
My oldest is 24 years old.
And then I have a 22 year old.
And then our youngest, my youngest is 18.
I mean, oh my gosh, hold the phone.
No, 17.
He'll be 18 in August.
Don't rush that, Sarah.
Wait a second.
I'm focused on 18 because we have about five months left until he turns 18 August 4.
So and there's a lot of work to do.
There's a lot of work.
So in that number 18 is I'm focused directly on because I'm preparing for him to become
an adult and the things and the stuff that we have to think about when he turns 18.
But anyway, he is our our what do you want to call him?
The sweet boy who he's the reason you're here.
He is the reason he is the reason that I found myself in this position and the experience
that has led me to be here.
My credentials are in Truman.
And along with that comes a fast track nursing degree honorary, I should say.
I did not go to school for that.
But I certainly know a lot about the medical field and raising a medically complex child.
He's been in school accessing special education since he was in the NICU, the neonatal intensive
care unit at St. Luke's, then went to the infant toddler program right out of there
and early to childhood developmental preschool.
And from there, we've been using and accessing special education services and probably will
until he's 21.
But yeah, home and community based services.
So yeah, everything that we do here in our office.
We've had a direct relationship with his life.
lived experiences, lived experience.
Absolutely.
I do have a college degree, but I'm in and it has helped us along our way.
But I really I started out wanting to be a pre preschool, elementary school teacher,
I was a preschool teacher for quite some time.
And then I went to formal education to be a teacher.
And just before I was ready to graduate, I had Truman.
So I didn't feel it was very fair to be in a classroom and have a child with complex
needs that we weren't prepared for.
So anyway, but in your past life, you were going to be a teacher.
I was I was but I am a teacher.
Yeah, right.
I teach families and I teach youth and I used to coach at the high school.
So I've been able to use my experience, formal training and informal training to teach families
and share my experience just as I would in a classroom.
Fair enough.
How about you, Melissa?
Why are you sitting here in this dark room with me?
I don't know why.
Because you made me do it.
I'm so sorry, listeners.
I feel like that might need a little bit of an explanation.
We're in a room where the light shuts off if we don't frantically move every 30 minutes.
I'm sure there's a way to fix that.
But so we're sitting here by candlelight.
It's very it's the mood.
It sets the mood.
I am sitting here because I also had a child that was born and required me to be his advocate.
I didn't set out wanting to do this.
I didn't you know, I just I didn't sign up to do this just because you thought it'd be
neat because I thought it'd be neat.
I had a child that made me become an advocate.
I had a child that forced me into this line of work and I am so incredibly grateful for
it.
This isn't what I wanted to be when I grew up.
I don't think any one of us did.
I don't think I didn't know this even this world even existed.
Exactly.
I didn't even know this world existed.
Yeah.
So my background is not anywhere even close to this.
It's I have a degree in HR business management.
I was in kind of you know, I worked in the retail sector, worked in training and operations
and then COVID hit and I couldn't do that for another day in my life.
And this just kind of I saw an ad on Facebook.
So potentially that's why Facebook could be why I'm here.
Thank you Mark Zuckerberg.
Thank you Mark.
And I read it too actually.
Really?
Yeah.
Okay.
A friend saw it.
I read it and then I was like, now whatever.
I have a job.
And then I came back to it and I read it and I could do that.
I could totally do that.
I could help parents navigate these systems that I have been navigating.
And at that time, so I've been here about a year and a half.
I started in January of 2021 right in the middle of pandemic.
That was interesting.
I had a job or a you know, an interview on zoom.
I mean all this stuff was very, was very new.
It was crazy.
But that's why I'm here.
I'm here because I have four kids.
My oldest is 17.
She's going to be 18 pretty soon.
She's going to graduate.
So don't, that's why I'm saying Sarah, don't rush it.
Don't rush it because I'm also in the same boat.
We have graduating seniors this year.
And then I have a 15 year old and my 13 year old has a rare neurological chromosomal deletion
called Angelman syndrome.
We found out when he was nine months old, he had a big old, huge seizure that kind of
fast tracked our diagnosis.
I knew as a mom, something was wrong right off the bat.
My pediatrician kept saying, no, he's the third kid.
He's lazy.
I just knew in my mommy gut told me.
So that's why I'm here.
I guess we, we have a little bit different.
I have a different story than Sarah.
We didn't spend time in the NICU.
You know, I didn't know that there was truly a diagnosis until he was a year old is when
we got his official diagnosis.
We knew that there was some chromosomal deletion at about nine, eight to nine months.
And then we started into the programs like Sarah said, then we started, then we were
an infant toddler.
And we were in all the therapies, developmental preschool, accessing special education.
Reese is now in the seventh grade.
And he's still is accessing his education that way, you know, through special education
and it will be until he's 21.
And you're also utilizing children's developmental disability and through Medicaid and all of
those systems well within your wheelhouse.
Yeah.
So I guess that goes back to when I looked and I said, you know, what is Idaho parents
and limited and what do they do?
I was helping friends that were going through these things.
I was so to have the opportunity to be involved in, you know, an organization that helps and
supports families statewide was really, really exciting for me.
So that's I'm glad I found it.
Long story short, I'm here and that's how I found it.
That's why I'm here.
Reese is why Reese is why.
Yeah.
And Truman shout out to Reese and yeah, I mean, I just thinking about what Melissa said,
I think that when we are going through some of the things that we go through as parents
raising these kiddos, we see all of the main many wonderful benefits and then all of the
challenges that families go through.
Yeah.
And in our in the back of our mind, we think it shouldn't be this hard.
How do how do people find out about these services and all of these things like you
see on social media, you talk to your friends and they say, well, I have this.
How do you have that?
Well, go here.
And so, you know, we are like, well, this needs to be this needs to be in one central
location and lo and behold, here we are.
It is.
And so we use I always think that in you know, I'm not going through this journey for nothing.
I mean, I've got to take what I'm learning in the trials and how hard it is sometimes
and how good it is and share this so that I'm not just going through it just to go through
it and right now waste my time.
But this stuff is I'm not I won't sugarcoat it.
It's this stuff is hard.
And I've got to be able to share what I'm learning in order to help others.
And that's what we do here.
We want the journey and the path to be as empathetic and not easy because I won't say
it's easy, but as smooth as it can be.
Like if we can give you a resource that you weren't already aware of and it makes your
life even a smidge easier.
Right.
Like I nobody's gatekeeping the information, but it's really hard to figure out on your
own.
And you know, that's there's people here that get it.
I guess that's the other thing, you know, working in an organization before my organization
was great that I worked for.
I'm not saying that it wasn't a wonderful experience.
I have so many friends from there.
But to work in a workplace that every single one of us is a parent of a child with complex
disabilities or special health care needs or, you know, just disabilities in one way
or another, we get each other.
And when we you know, that's that's so nice to be able to have that to be on a team that
truly truly understands.
Right.
We have staff here who have kids with mental health diagnoses, complex mental health diagnoses,
accessing the Idaho's Yes program services.
And you know, we we see it all here.
There isn't a story that unfortunately that shocks us.
Yeah.
And so I want to ask you, Allison, why are you here?
Yeah.
How much time do you have?
Are you going to say Facebook?
I I'm actually not going to say Facebook.
So I found Idaho Parents Unlimited through my children's school.
Very nice.
Yes.
So on one of the monthly flyers, there was a little blurb about how there was a thing
called parent leadership upcoming and it was going to be in our region.
And they said, you know, this is for parents of children with disabilities or special health
care needs.
If you're interested and want to be active, you know, click here and apply.
And I did because I was trying to be as active as possible because my kids were.
I don't know how to say it.
My kids don't look unique.
Disabled.
Is that a good way to describe them?
Yeah, they have silent disability.
Absolutely.
Yeah, they they, you know, I just get the people in the grocery store who say things
like, you know, you need to you need to discipline your child because they don't see him as,
you know, being disabled.
So I was actively trying to be in the community applied, got accepted, went to leadership
with all of these other ladies that you hear here.
And from there, I just actually remember being in McCall at leadership and thinking, wouldn't
it be so cool to work here?
I couldn't be cool.
And then they had a job opening and yeah, yeah, yeah.
The rest is history.
Unlike Sarah and Melissa, it was my oldest child who started it all, I guess, you know,
spent some time in the NICU.
He's always been what I lovingly refer to as the gray area.
He never he doesn't jump out.
Oh, yes.
In one, you know, if you're in developmental preschool, they say you have to be three standard
deviations away from the mean in one category or one and a half and two.
And my son was consistently like a one point four five away in a category.
So it's always been this is this is truly a child that we need to help, but we don't
know where to stick him.
But so that's me.
My second child came along a little more apparent, I want to say, than my first child, more recognizable
that this was a kid who could definitely benefit from early intervention, which huge proponents
of early intervention here, because that is where the work is done.
So we have put in time in early intervention.
And yeah, I would say I can't speak highly enough of it.
Yeah.
So those first two kids, they're now in second and first grade.
Unlike my other coworkers here, my oldest son is solely supported by a five or four.
He did have an IEP, but now he's just on a five or four.
And I still know a lot about IEPs and we're accessing children's developmental disability.
Like Sarah said earlier, I am that parent with a child who's supported by the yes program
dual diagnosis with some pretty complex mental health things going along with both of my
boys having being autistic.
So yeah, I have a total of three kids went to school for psychology, wanted to wasn't
sure if I was going to be a psychologist or a therapist, but it's going to be somewhere
helping people.
And I had kids and I stopped working and everything changed.
And it's kind of like what Melissa said earlier about how you just know there's something
a little bit different.
And you guys both, Sarah and Melissa had the benefit of having kids, other kids first.
And so it might've stuck out more to you.
I think you're right.
But I was just like, you know, when your kid is nine, 10 months old and they're babbling
mama, dada, and then all of a sudden there's like a solid year, year and a half where they
say nothing.
That's just not in the book, right?
Right.
Yeah, no, that's not the book.
I mean, that brings up such a good point when parents like parents are calling us because
this stuff isn't in a book, right?
There's no manual that tells you how to access home and community based services, right?
It's not on a billboard.
What to do when you're, you know, like exactly.
That's a great point.
I learned, like I said, I went to parent leadership, learned so much at parent leadership.
And then I was like, ah, this is great.
I know so much, so, so much.
And I started working here and I just remember with them the first week.
But what do you mean?
I could get diapers provided to me.
Hold on.
Stop.
She would come in my office and I'm like, what else can I get her today?
Prescriptions to stop the presses.
You don't know what you don't know.
Exactly.
And even when I start to feel really confident, all of a sudden I'm like, I did not even know
that that existed.
Yeah.
And that's so great because of all the professional development we get and we get, we get the
opportunity to go cross country, to be in a large room with other all every state has
a parent training information, family to family health information center.
We get the opportunity to go meet with them, network, compare, contrast resources that
and how do you help families and what demographic do your families fit in and how do we reach
those families that are in our rural communities.
So when we are, we're just as frustrated as everybody else when they don't know who we
are and how we help.
Right.
And we actively every day, you know, hence in all honesty cards on the table, hence the
podcast.
Right.
Just another method modality to reach people, webinars, podcasts, trainings.
Yeah, I mean, we're such a small organization, but we are statewide.
You know, there's, there's only what nine of us in the whole company, nine and the four
of us, three of us right now are mainly the ones who are taking calls and emails from,
from our families.
Yeah.
So, I mean, but it goes back to the, you know, we don't have this an exponential advertising
budget or a marketing budget that we are able, you know, to spread the word or the, our word
far and wide that this is what we are and who we, what we can do.
You know, there's not, we don't have the ability to do that.
So we rely on parents and we rely on parents to tell their friends and their other parents
and you know, tell the girl what, um, sitting next to you in the waiting room at your kid's
therapy or wherever really, really.
That's how we get our word of mouth out.
Yeah.
And we are just as frustrated that people don't know we exist until they actually really,
really, really, really need us.
Not before to kind of, you know, just get their feet wet.
It's usually pretty bad.
But on the flip side, if we do have a parent who's, you know, got a new diagnosis, this
is they're just dipping their toes in the water.
We have a lot of established resources.
Right.
Yes.
And we start slow right from the beginning and try not to make it overwhelming.
No.
And I think that's important that you said that Alison, because we, we do, and I just
had this conversation with someone else, um, the other day that we remember what it was
like.
I remember leaving the Nikki with a binder filled with resources, filled with information.
Did I open that once I got home?
No, it was overwhelming.
And so I think that when we do help our families, we try to do it in chunks that are manageable
and realistic and so that we can give this little bits of information to our, to our
parents and families and grandparents, whoever it is calling our office, little chunks and
bits of information and resources or steps that they could potentially take in order
to get what it is that they need.
And then, then we always are here.
Yeah.
For the next step or.
Yeah.
I would always say that comes from our experience.
Right.
I mean, we, there's your binder didn't work.
It didn't work.
There was no way you could have opened that and then gone, okay, I'm going to do this
and I'm going to do this and I'm going to do this.
You needed a human to really help you.
What is the first step?
Right.
And that's what we, that's what we do.
I wish, I wish that I had known about Idaho parents unlimited right when we got Reese's
diagnosis, it would have been huge because I didn't.
I didn't have a clue and I figured it out on my own, but it was, it was trial and error
and, and parents wouldn't have to do that if they knew that there was a resource and
every, every state has an Idaho parents.
Well, it's going to be called something obviously.
Yeah.
But a parent training and information is in every state and that's a resource that is
so underutilized.
Let's leave it like that.
And I don't want people to feel like it's a one and done.
Like typically we are, we're working with you for years.
Yeah.
As long as you need.
And I think another really important thing to mention a benefit of working here is, you
know, you call me, you're not just calling me.
I'm going out to Melissa and Sarah and we're all, we're all brainstorming together to figure
out, is there another resource you could, you could help this?
What would you say?
You know, kind of a thing.
In fact, we just, we just had some rearranging in our office to make it easier for us to
collaborate together.
I think we can just yell now.
We don't even have to walk out of our office, right?
No, but we, we, but yeah, I mean, we do all of us, even, even though I've been here for
almost seven years and Angela, our executive director who's been here for, um, I think
she's going on 11 or 12 years as well, we all collaborate with each other on the issues
that we're, when that we're taking the calls and emails, um, for.
And additionally, we're very active and we follow closely legislation and collecting
testimonies from parents and, you know, calling on people who feel comfortable speaking to
right.
Idaho legislature and we're active kind of in all, if there's an area that touches parents
or children with disabilities, we're there and we have a seat at the table.
Yeah.
Our partnerships are, I mean, our statewide partnerships are unbelievable.
It's, I mean, we, we're very, very proud of how we have worked to be seen as these credible,
reliable sources.
We're not just parents, um, and I think that's, that's really big.
Um, and, and it's something that we are really, really proud of.
I mean, we have the state department that we partner with all the time, the state department
of education.
I mean, we can pick up the phone and ask a question to make sure that the information
that we are providing is still as relevant as it is, is when we find it or when we use
it.
Um, we are the same with, um, the department of health and welfare.
Um, and no, it's okay.
I, I knew what you were, you're going to see, we know, right.
And you know, and vice versa, the state department will call us and the department of health
and welfare from their different departments will call us to see if we have heard anything
different or if we know of any resources to help families, um, that the, that they're
working with.
And, um, you know, we are a neutral party.
We don't pick sides.
We don't, we don't say on the side of the state department of ed or any school districts
or our partners with the schools.
Um, we don't, we don't pick sides with the department of health and welfare.
We are truly a, I think one of our, um, former parent leaders, um, called us the librarians
of special education and healthcare because we are, we will find that information.
They'll find the accurate up to date relevant, um, information for our families that, um,
is going to help them the best way that they can.
100%.
You call us, you tell us your situation and we give you tools you can use.
Absolutely.
But couldn't I just find it in a Facebook group?
Potentially, potentially you could, you could, but it, it, you're going to get someone's
experience in a way that they experienced it and that might not necessarily fit within
your, within your situations or the information is, you know, it's like the telephone game,
right?
Um, it's what he said and then she said, and then he, and then she, and she next to her.
And so it doesn't discount that there was a conversation and an experience by, by any
means.
Um, but what we, but what we do when we, um, follow up with our calls, um, and emails is
we provide the direct language that it comes from, the resource that the information comes
from and then who to contact, um, to, to follow up if, if that needs help.
And we're parents ourselves, but we are not ever going to say, this is what you have to
do.
We are not going to provide you advice.
We are going to provide you resources, factual, credible information and allow you to make
those decisions on your own.
Empower, empower you as a parent or a grandparent or a family member to make your own choices.
Exactly.
We don't want you to call and have you leave the call saying, Oh, well, Melissa at I-Pole
said we want you to leave the call saying, well, I got these resources.
The special education manual for Idaho says, or this from the certified family home portion
of health and welfare's website says we don't, we're going to give you, we're going to cite
our sources.
We have the receipts.
Yes, we are bringing receipts.
Yeah, we are.
I like it.
But on the flip side, if you say your child has just been diagnosed, you have an autistic
child, I might say, well, this is what I did.
Absolutely.
Yeah.
This is a resource I like.
Yes.
This worked for my family.
It might work, it might not, but this is, this is what we tried.
And so far it's working.
And tagging on kind of what you said earlier about gatekeeping information, if you're going
to call us and you're going to ask us about, let's just say ABA and in some Facebook groups,
that might be kind of a faux pas, but I would give you resources about it.
Yeah.
I'm not saying that's going to be off limits here or I'll just give you the evidence-based
research that I have on whatever therapy you're asking for.
I'm not going to recommend any specific doctor or any specific therapy.
You come with a situation and I tailor resources to the questions that you asked.
100%.
Yep.
We always have that saying, we meet our families where they're at.
And that's what that means.
We meet you where it is that you need your information.
Yeah.
And I would even go so far as whatever modality you need your information.
We are finding, hence the podcast, but we are finding that different parents have different
ways of receiving information or how they need to be able to receive information.
So if you need to text, we can text.
If you want to email, we can email.
If we need to zoom, we can zoom.
We really do meet families where they're at because we recognize that it is, as a family
member, it can be really difficult to find that space.
Yeah.
Okay.
I'm going to put you on the spot.
What is one thing that you wish parents knew about whatever you want it to be about, about
calling EIPL, about being a parent of a child with a disability or special healthcare need?
Is there anything?
I wish they knew about EIPL.
I wish they knew that every state has one of us because I wish I had known that.
I'll jump in too.
I wish people, I wish parents had the knowledge that every state is different.
Yeah.
So what you can get in Idaho, you might not get in another state.
EIPL, IDEA, and 1973, Rehabilitation Act of 1973.
While all of that is federal regulations, there are still programs and things that differ
by state.
Yep.
I wish that was common knowledge.
Yeah.
Can I pick two things?
Of course.
When families reach out to our office, there might be a 24 hour turnaround.
So you're not going to directly be able to call and email unless you have our direct
emails or whatever, but it might take up to 24 hours for someone to get back to you.
Because there's not very many of us.
Because right now there's three of us.
But that's not to say we don't.
I mean, we take about 10 to 15 calls a week, sometimes more, or emails, and we get back
to our people who call us and email us.
And then I can't remember the other thing.
But I think that I'll remember it in a minute.
But I think that's it.
Just being patient.
Oh, and now I remember.
With us as we make sure that we are getting you all what you need and in the most timely
fashion that we can.
Sometimes it's not 24 hours.
It's faster.
If you call on a Friday night, we're definitely going to it's going to be Monday morning,
probably.
But then on the other on another totally another end of this, we do not have the capacity to
attend appointments or meetings.
Still mine.
Oh, sorry.
We are housed in the Boise area, but we take calls and emails and texts and carrier pigeon
from across the state.
And you know, we we do have to battle with the time zone.
And sometimes that's true tripped us up.
But we we wish we could go to IEP meetings.
But our philosophy here is that we empower our parents and family members to advocate
for their own families for what their families need, because you all know what your family
needs the most.
Yeah, exactly.
That's our job is to give you your rights, your responsibilities, how you can be an advocate
in your special education meeting or in your doctor's appointments.
But yeah, it's it's right.
We can't attend those.
There's just physically no human way.
Right.
And also, we are not we do not charge families or professionals for our services.
Yeah, all of our services come at no cost to families and professionals who who seek
our our services.
So most of the information you get is valid, vetted, reliable.
And so, you know, we are you.
We don't feel we need or have to pay for those services.
They are your rights, your responsibility.
You don't have to pay for that.
Exactly.
We're like the internet.
We're free, maybe not like Wi Fi.
But the internet is a good metaphor.
My metaphor is running on the rails.
Okay, that's okay.
I think the only thing that I would add to this is this may sound weird, but please don't
be afraid to be emotional when you call us, because we are moms who we've been there,
done that.
Right.
And I I feel sad when a parent calls and they're crying and this is hard and they need help.
And then they apologize for crying.
Yeah.
I mean, I don't know.
I don't know why.
But I like please feel comfortable telling us as much as you feel comfortable telling
us.
I mean, our society has just made us as right.
Feel like we have to apologize any time we show emotion.
But we get it.
We have all been in in that meeting that right.
Yeah, we've all been in a meeting that we've cried.
We've all walked out of a doctor's appointment and just into I mean, we have all been there,
I guess is that just the over.
Yeah.
I mean, we just have been there.
And if we haven't, I mean, I guess that's the other thing that I would just love to
let people know.
If they call and I am routed their intake and I don't know anything about, you know,
ABA therapy, I'm going to throw that out there.
I don't know anything about it.
My child doesn't receive that.
It's not anything in our wheelhouse.
I have someone in my office that does, though, and I'm going to I don't even have to walk
down the hall anymore.
No, ma'am.
Knock on the wall next to me.
And Allison, I'm going to say, Allison, help me with this.
But on the on the flip side, if she has, you know, a family that comes and is, let's just
say PCS hours, PCS hours, I was going to say has a G tube.
Exactly.
And I are her people, you know, so she could come to us, talk about G tube supplies.
Where do I need to get these feeding?
And someone is going to be able to have the answer to your question one hundred percent.
And I love that for us.
I love that there is nothing that really stumps us.
And if something does, we have a partner that can that can really fish us out of that hole.
Yeah, not a hole, but we have partners that are on our speed dial that we get a pick up
and just have those conversations with.
We're really lucky in that respect.
We are.
Well, I hope you enjoyed the special edition.
Thank you so much, everyone out there for listening in.
If you are in Idaho or planning on moving over here to Idaho and have any questions
on systems or services for children with disabilities or special health care needs, please reach
out to us on our Web site.
I pull Idaho dot org.
That's I P U L Idaho dot org or by giving us a call.
Be sure to come back next time for our regularly regularly scheduled programming.
Until then, I'm Allison, and this has been Unlimited Parenting.