Welcome to Unlimited Parenting, where we discuss having children with disabilities or special
health care needs.
I'm Allison, and with me today is a very special and esteemed guest, Jen Johnson.
She's here with us today to share some of her experiences and part of her journey.
So thank you, Jen, for being here.
Thank you for having me.
Jen is one of the few people who opted to come and join me in our little podcast studio.
So that's exciting.
First time ever having a guest in our office versus on Zoom or on the phone.
So thank you.
I'm special.
Obviously.
So I guess I kind of wanted to start by asking you to share a little bit about your son's
story, how he got diagnosed and a little bit about that journey.
Sure.
So I always say I think my journey is not typical, but maybe it is.
I have got twins.
So I've got baby A and baby B.
And during my 20 week ultrasound, baby A was diagnosed with a heart defect.
And so I had prepared for that for the second half of my pregnancy.
And I remember kept thinking like, how is this going to be having one child that has
a serious medical condition and another child that doesn't?
Little did I know baby B was going to be more of a struggle.
Surprise.
Baby A actually helped me to get early intervention services for my other son.
So my son's first open heart surgery was when he was seven months old.
So it was right when he should have started crawling.
In fact, baby B started crawling in the hotel room the day before the surgery.
So I know what to put on those sheets of winded baby B.
I remember that one.
But anyway, so he didn't crawl because for heart surgery, they crack your sternum.
So obviously it was too painful to crawl.
And the pediatrician said, oh yeah, call infant toddler.
They'll get you in for physical therapy.
Never said a word about all of these behaviors I was seeing in my other child about infant
toddler being an option.
So it's like, okay, great.
So got my son in.
It's an automatic qualifier.
You've got this physical disability.
So we didn't have to do testing.
And then I don't know, a few weeks in to the therapist being in my home, I jokingly said,
can you help this other kid who's got this crazy behavior going on?
And she said, oh yeah, actually, I think that you need an occupational therapy evaluation.
And I was like, oh.
Do you think that she was just waiting for you to at?
Maybe she couldn't say.
I have no idea.
She seems like she had a really prepared response, right?
Actually, we can help you.
So yeah, I mean, it was interesting that the pediatrician hadn't told me this was an option.
This therapist had known.
And it was only because I jokingly wanted somebody to help with this crazy kid.
And I hate that word.
He's not crazy.
He's got some disabilities.
But at the time, that's what I thought.
He's just bouncing off walls.
He never felt pain.
I remember telling the pediatrician like he would fall and it wouldn't phase him.
And she said, oh, he just has a high pain tolerance.
And then occupational therapists came out and said, that's because he has sensory processing
disorder.
There's no such thing as a high pain tolerance.
It's about how he's processing the feeling.
Right.
So that was how I got introduced really, really early on into early intervention for him.
Falling into it by luck.
Right.
Like had me by a literal joke.
Yes.
Right.
And if my other kid hadn't had this heart defect, who knows how long this would have
been.
That's a good point.
Before I would have gotten any services.
And it was not much longer that we were because of behavior asked.
I mean, he was like a year old and we were asked not to return to daycare.
So at one.
Yeah.
So I got early on experience with, okay, what do I do?
I was lucky at the time I had an amazing job with a great income.
And so I was able to just, I hired a nanny is what I did because that was my only option.
Again as luck would have it, this nanny that I hired was going to school to become a behavior
interventionist.
Oh, wow.
And had previously worked with kids with autism and she kept saying, he's autistic.
And I was like, no, no, I've, I've seen the screening, the doctors never, he's not autistic.
Because at this point he's like 18 months, which is when you do that first screener.
Right.
And, and he, and he didn't have the stereotypical first screener kind of things either.
So in my head, I was really thinking of the stereotypical, like he spoke, he walked, you
know, developmentally, there was a lot going on.
He just had a lot, a lot of behavior.
So I kept saying, no, this isn't the deal.
He's just got all these behavior issues.
So jump ahead to three years old when you're ready for developmental preschool screening.
And baby A with a heart defect also had a speech delay, which I later found out was
just because he couldn't hear.
But again, I didn't know that was the issue.
And he passed his hearing, his newborn screening.
He had, so he had constant fluid in his ears.
And then he also has auditory processing.
So you pass some of those hearing screenings.
Um, and, but then you tease out the other issues later when other things present.
So he didn't really know.
And like every time before heart surgery, cause he had multiple, they would always say
he had an ear infection, but there were no signs, but it was like, okay, well antibiotics
before the surgery.
Um, so we go to the screening, um, and I assume baby B is going to get in.
No problem.
Cause he's got these huge behaviors, right?
Baby A with speech gets in no problem cause of speech.
Sure.
Yeah.
And baby B because developmentally he was meeting a lot of those milestones.
It was a struggle.
And I said, I don't know what to do.
What are you going to do here?
And they said, well, there's this other behavior screening we can do.
We don't normally do.
Okay.
So parents, there are more screenings they don't normally do.
Do you hear that bonus screener?
So it's a, it's a purely aggression behavior based and he was off the charts on aggression
and they were like, oh yeah, qualifies.
Here we go.
Wow.
But otherwise would not have qualified.
He wasn't one and a half standard deviations away in two categories, right?
Um, but because he was so off the charts on that one, he qualified.
So we get into developmental preschool and then a few months later we find out about
the hearing issue and my son gets air tubes and his speech is night and day difference.
So that I'm panicked.
Wow.
What's going to happen if he gets kicked out?
Oh, oh, right.
Cause now he's doing really, really well cause he can hear.
Um, but I think they took pity on me and I said, I have twins, please help.
And they both continued through developmental preschool, which was amazing and wonderful
for me.
Um, at this point, baby bees only diagnosis is all mental health.
So they're just saying, we don't know what's wrong with him, but it's mental health of
some sort.
We can't tell until he's older, right?
So we don't label anything.
We just try to start, we medicate.
He doesn't sleep.
So I medicate for that.
We, you know, we started on the journey of medication with no diagnosis.
Right.
So it was like, I don't know.
Nobody knows something's wrong.
We don't know.
We're just going to keep trying until we find some of that works.
Keep trying.
Um, kindergarten rolls around and I had, I lost my job right before kindergarten started,
which again turned out to be a blessing because I got Medicaid.
It opened up the door to more services.
I wasn't even aware of like behavior intervention.
So we started down kind of that path again, still with no real diagnosis, but more people
saying this looks like autism to me.
So we went, we had an initial screening.
I won't say the provider's name, but it is a well known provider who said, no, I think
this is just early onset bipolar disorder.
He's in kindergarten.
So five, five or six.
Yes.
Um, I guess he was five.
Yeah.
Five.
Cause his birthday is April.
So, and it was somewhere mid year.
Um, I was like, okay, well that's what it is.
So I go back to his psych and she says, really?
That's an psych doesn't want to actually label at that point, but we medicate and treat
similar.
Okay.
And so we just kind of keep working and then, um, over the first few years of elementary
things got really tough.
Um, educationally, he was falling way behind the development side.
Now as I'm seeing it.
So the physical development was not a problem for him, which is what they're screening
for initially.
Okay.
But that social starts to become obvious.
Like he's not developmentally at the same point of other kids his age and I'm seeing
it and it's like, there's more going on here.
This isn't just mental health.
Um, and at this point we're adding more mental health diagnosis.
I think we add oppositional defiant disorder, ADHD, ODD, you know, and these are in his
chart on paper, right?
So we're labeling all of these and I, and he does have his dual diagnosed at this point.
I mean, he does have mental health, but we just keep adding mental health diagnosis.
And then I kind of, you get into the world of knowing other parents, right?
Cause he's on an IEP or another parents had started coming to eye poll trainings.
I'm learning like, Hey, I think there really is something else going on.
So I approached the doctor again and I said, I think this guy actually could be autism.
And it's like, well, it might be.
It was like, is this the same?
This is his med manager.
So it's like, um, his pediatrician, I love her.
She's great.
Uh, we're kind of beyond her.
Um, so we see her once a year at this point and she keeps trying to send referrals to
anywhere and everywhere.
Um, but so we're doing that.
And so we get on a wait list, right?
And we all know those wait lists.
So I'm on, I don't know, a couple of your wait list to get more testing done and things
really start to blow up.
And so I'm in the office crying and I'm like, we got to do something.
And she said, you know what?
Call this other place.
I think they can get you in quickly.
So call the other place.
And they said, could you come next week?
Yes, I can.
Yes.
Why didn't anybody recommend this before?
Right.
Um, it possibly, it wasn't as thorough of an evaluation as some of the places do, but
they said, yeah, this is definitely autism.
I was like, okay.
And guess what?
That opens up even more doors.
So many doors.
So now we're into the developmental disability programs.
We're getting more therapies, more providers, and it's also, I'm not into labels, but boy,
it sure helped.
Now when I'm telling people and sitting in these meetings at school and at doctor's offices
and I'm saying, not only does he have this mental health stuff going on, body has autism
and it's unfortunate, but society sees that in a more positive light.
It's like, oh, this behavior is because of that.
The behavior is also because of mental health, but that scene is like this negative, awful,
I don't know, he could control it somehow thing.
Or even sometimes it's a parenting issue or this is just a bad kid.
But if you say, well, this is an autistic child, they're like, oh wait, okay.
Well, we know more about that.
Nevermind.
We understand.
Yes.
So all of a sudden doors open.
We had a terrible, awful experience at school.
So I pulled him out of that school, got him in another program.
It was a self-contained classroom.
I had fought that for years.
And I struggle now because I'm for inclusion except for getting him in that program was
night and day difference for him.
He dreaded going to school before he...
In the self-contained classroom?
No, when he was in gen ed, when I was just pushing for gen ed with the pullout.
And so every day I was getting a call to come pick him up.
And there were just police being called.
It was a terrible, horrible situation.
Can I ask how old they were at this point?
So this was, by the time I pulled him was fourth grade.
Police were being called on a fourth grade.
I think the police had been four times and two criminal charges pressed when I pulled
him.
The day that the criminal charges were pressed is the day I pulled him.
But yes, it was an awful experience.
But this teacher made the biggest difference in my son's life.
The first day was awful.
I will tell you the first day was awful.
It was awful for him.
It was awful for the teachers.
I was getting messages, but I said, do I come?
And they said, no, we're just telling you what's happening.
And I was like, oh, what do you mean?
No, I'm going to stay at work.
Okay.
So after that, after that first day, he started to thrive.
He's still academically way, way, way behind.
He's now going into ninth grade.
And he is way behind.
And that's, that's a variety of right.
He's got some intellectual delays.
He's got all this other stuff going on.
I also think the learning, the learning for him probably stopped in third grade.
I think when teachers gave up when you're not regulated, you can't learn.
Right.
And everybody gave up on him and they just heartbreaking.
It was like, you know, we don't want him in the school.
He's scary.
They're telling another.
And there were times I admit, you know, like if I were another parent, I would not want
that child and with, I would be worried for my child.
I understand.
I do.
But it was also difficult because my child does deserve to learn.
Right.
And he didn't get that opportunity.
So he's, he's making up for that now.
And he, but he's enjoying when the accommodations are correct.
Right.
So reading is a big struggle for him.
So if we can provide curriculum auditory for him and make that, then he's going to do better.
So just learning what those accommodations are is huge.
Getting the right diagnosis is huge.
At this point, we still have almost all of those mental health diagnosis as well.
I always, I tell people now when we go to doctor's offices or we do the IAP, autism
and bipolar, I think are both going on and are both huge impacts on his life.
Which one is bigger?
I mean, every time we go to write the IEP, right.
And you got to put diagnosis one, diagnosis two.
We have a long conversation about, well, this year, which one do we think is number one?
We put both.
But which one is number one?
And it's important because those gen ed teachers that are using that to say, how do we help
this child need to know which one's number one, right?
And it's unfortunate, but that is the way it is.
So kind of figuring out what's number one, how do we help him?
How do we go through?
Is huge.
But today he's 14.
And when I came here today, he was out riding his bike with the neighborhood kids, enjoying
his summer.
We're not doing extended school year.
He does extra tutoring.
And I said, if we continued that through the summer, our deal was no extended school year.
So he's doing tutoring.
It's kind of already introducing supported decision making.
Right.
Because here's the deal and it's your choice.
Do you want to do extended school year or do you want to do some extra tutoring?
You make the choice.
So yeah.
And he told me Monday, we were walking into tutoring Monday morning.
He does it Monday, Wednesday mornings.
And he said, I'm really glad that I decided to do this.
That's one.
I'm glad that you're glad.
And today he came out and he is working on words.
Now I'm trying to remember that and in L E because it's common for people to think, oh,
here in O sound, which I didn't.
But the tutor said that's normal.
And he asked to bring the sheet of words home so he could practice reading them.
Oh my gosh.
It's like now the sheet is still in my car.
He didn't get out of the car yet, but the thought was there.
He asked to bring it home today.
So and if you're talking about even comparing to typically developing peers, I can't think
of any kid that age.
He's like, I'm bringing my reading list in.
I want to work on it.
So it really is huge.
So my long, huge drawn out story is to say you're not necessarily going to get the right
diagnosis.
The first diagnosis at this point, I think he's had three or four neuropsychs, you know,
and all of them were kind of slightly different, but also necessary for services.
Exactly.
And, and so just keep trying, I guess, and listen to your gut.
Right?
Like, or don't, because in the beginning I was like, no, this isn't it.
And all these people were saying, yes, it is.
But it was the hard thing is it was outside people, right?
The medical professionals, they're like, no, that's not what we see either.
It was the people living the life.
It was the other parents.
It was the interventionists.
It was, you know, it was nanny.
It was these people who were seeing him that were saying, hey, this is what we see.
And then when I finally got involved in the world and started seeing it, it was like,
oh, yeah, I see it.
And then knowing to go to the doctor and say, actually, I see it.
Do you think that your team now in school is, is better?
Is it working?
Do you have a positive partnership with them?
Um, yes and no.
Junior high has definitely been much more difficult.
Those last couple of years of elementary were, like I said, that teacher was huge, amazing.
We had the same teacher for the end of fourth grade and fifth and sixth grade.
And I have still messaged that teacher to say, oh, you made a difference.
In fact, I'll brag a little to seventh grade.
He was student of the month, a couple of months into school.
And so it was like, you know, we made a big difference.
But it is harder because he, so he's in the self-contained classroom two to three periods,
depending on the semester and what classes were, because we have to waive classes, right?
So you have to pick what do you want, what do you not want?
And I want him to always have one elective that he likes.
But to do that, then he misses an extra.
He has to then we have to pick a gen ed one to not take.
So it's harder.
And then when he's in these gen ed settings, these teachers, I mean, I don't blame the
teachers, right?
I don't know how many students a junior high teacher has, but a couple hundred.
I mean, you know, and so of those, how many of them have IEPs and 504s?
How many do they have time to read?
They don't.
Funding is short, right?
So he's supposed to have a one on one aid that helps him because he needs things like
he can't read the curriculum, right?
Right.
But the schools can't hire.
They don't have funding.
And even if they have funding, they can't find anybody to hire for shortage.
So they've got one para that's working with three kids.
And if my son's in his elective class, right, he's the only one because they all try to
bunch the kids up then so that at least it's the same classroom.
But in those scenarios, or one of the other kids is an elective, right?
That one para jumps between three classrooms to try to provide that support.
And sometimes because we've because we figured it out right.
And luckily his behavior is under control now.
So, so they also see like, well, he doesn't need that behavior support anymore.
But kid down the road needs our behavior support.
And it's a safety issue.
So that kid gets the para.
It's like a triage triage situation in the schools right now.
Yeah.
So, so that's the tough thing.
Oh, what where he really needs the support now is academically, which is amazing because
behavior got in the way of academics.
But now that behavior is not in the way, he also then can't get the para support that
he needs.
So that's.
It's unfortunate that it's this way, but it's working for right now.
Yeah.
And and I'm lucky I supplement with outside tutoring, have a scholarship that they provide
and then grandma provides the other scholars.
Shout out to you, grandma.
So yes, so we were just supplementing however we supplement.
Because even you know, I know this is really cliche, but at the end of the day, you're
still the you still have to figure out a way to support in the home in the community, no
matter what services they're eligible for being provided or if there's a workforce shortage,
you're still going to try to find ways to support and you use whatever means necessary.
Yes.
Thank you, grandma.
Yes.
Now, if we could also just find some BIs and CSWs and you know, if you're listening, we're
putting that into the universe.
Can I ask about baby A?
Yes.
Are they are they being supported by special education or so he's had his own kind of weird
road as well.
So he has ADHD, but otherwise and that is still a diagnosis that causes issues, right?
Oh, but I but it's funny because I'm like, but it's just ADHD and it's just a heart defect,
right?
Because if you live in this world, ADHD does kind of become, oh, it's just ADHD.
So it I feel bad.
But he so he's bounced actually on and off IEPs.
He's not currently on one.
He he's been interesting.
Elementary school, kindergarten, when we did the three year.
Yeah, revised after the developmental preschool.
They said, oh, I don't think he needs it.
And it was like, OK, yeah, I think he's good.
By the way, twice they said that and didn't provide testing.
I didn't know then that they should test.
So just a heads up parents testing.
But took him off.
And then it was a couple of years later that we got auditory processing diagnosis.
And he was struggling.
And so I went back to the school and they said, oh, let's just do a five or four.
It's like, OK, well, that that'll be fine.
And so we do that.
But he's still really struggling.
So go back.
I'm like, let's let's do this.
So not even sure how somehow we like agreed because I don't even know how much testing
they did some testing.
But OK, yeah, let's put him on the IP.
Oh, I do remember I had outside testing done.
That's right.
I got a neuropsych.
Oh, like an IE.
So I went and got a neuropsych and the neuropsych diagnosed him with a specific learning disability
and written language.
I took that to the school and they were willing to accept that.
Wow.
That's I remember now.
Memory unlocked.
So they put him back on the IP.
That again.
And so at that point, I also had him in outside tutoring.
And a year or two later, they said he's doing really, really good.
I don't think he needs an IP.
And I was like, well, that's what you think.
And so I go to the outside tutoring agency and I said, this is what they said.
And they're like, really?
Because that's not what our testing shows.
But can we look at their testing?
And I was like, sure.
Why not?
So I went back to the school and I said, hey, outside agency wants to see your testing.
They went, oh, testing.
So we did testing that they hadn't done.
And lo and behold, not only did he still qualify for an IP, but he was previously on a written
language.
He now was on a reading, written language and math IP.
Oh, for goodness sakes.
So testing, testing parents, testing and documentation.
Yeah.
Ask for the data.
So he continued on that until this past year or so, eighth grade.
And he really, once you get to the junior high level, there's not a lot.
If you're not in a self-contained classroom, the IP gives you the resource room for one
of your electives to do homework.
Okay.
That makes, yeah.
So it's not providing a lot.
It's not like in elementary school.
Right.
And he was doing summer school so that he could still take an extra elective.
So we had a conversation with him as well and said, what do you think?
Is this helping you to have this extra class?
And he said, no, I'm bored and they don't help me.
And I said, nice self-advocacy skills.
Okay.
Then I'll go ahead and just wait.
So I waived the IP without testing at that point.
And he's, he really is doing pretty well.
So good for him, but I can tell when he's not medicated.
I've said that so many times.
Is he on a 504 now or nothing?
No, we just have nothing.
Yeah.
Because there aren't, there aren't really a lot of supports that he needs at this point.
So.
Wow.
Good for baby A.
So yeah.
I'm curious.
This is a little bit of a pivot.
Can you share a little bit about how you found iPoll?
Because I have heard a very specific story and I want to go straight to the source to
see if it's true.
Well, so, so my initial finding was just doing a couple of trainings.
Okay.
So that's not the story you heard.
So I, I will tell you another parent when I was in kindergarten said, Hey, you should
go to this training.
And that was pre COVID when everybody went in person and I came in person and it was
kind of fun.
And there was a snack tray.
There was snacks and drinks.
And but anyway, so I'd come to a couple of those, but yes.
So like I said, when things were exploding at school and police were being called, my,
I was picking up my son on a, on a daily basis.
And I mean, I couldn't work.
I mean, that was, it was, it was very difficult.
It was every moment of every day.
Yes.
And every time the phone rang, I still have PTSD, right?
When I see a school name on the, on my caller ID, cause it's like, we just talked about
that in a webinar.
Like, yeah, it's real.
And so, yes.
So one of those days that I got called to come get him yet again, I'm not sure if that
day was the day they, they called the school lockdown because he got upset and jumped on
a table.
So versus a room clear, they did a complete school facility lockdown.
So I went and got him and I brought him with me to iPol and yes, I walked in the front
door and Bill, the wonderful it guy here was sitting at the front desk and I was crying
and I said, Oh, I don't have an appointment, but I need help.
And Ms. Sarah, who's still here was sitting in her office, which was right by the front
at the time and said, send her in here.
And I had talked to her, I think a couple of times on the, I had emailed a couple of
times as things were, but it was like, I'm just going to iPol.
I don't know who they are.
I mean, kind of, but you know, I'm going to walk in the door and I'm going to ask for
help.
And I sat down and I said, so I just picked him up for the millionth time and I don't
know what to do.
And so that kind of started my journey on, okay, let's look and see what's been done.
Let's, you know, I did at one point, I did file a state complaint because the behavior
plan was not being followed.
We had facilitated meetings.
I didn't know about facilitated meetings.
Parents thought that's an option as well.
But it was just kind of walking through here are the steps, here's what we do.
But yes, I don't think it's normal to show up crying at the office, but that's what I
did.
But I just have to say that people often aren't reaching out to iPol on their best days.
So when we get and that it does happen, parents just come in.
And when that happens, we never expect them to say, look at this report card.
It's so wonderful.
So and I know you know this, but maybe if people listening don't we everyone that works
here is a parent of a child with a disability.
So when you come in like that, it resonates with us and we're going to just try to help
you the best that we can because we've all I've walked into this office crying before
I walked in crying and Angela's like, what what happened to her?
And she looks at Melissa, hug her, hug her.
And they're both like, we know we've never seen you like this.
And of course, it was over an IEP eligibility meeting.
So we get we get it.
Yeah.
So it was very but and no, my problem was not solved overnight.
But I knew the steps to take.
Right.
So documentation, right?
I think you say that here, right?
If it's not writing, it didn't happen.
Isn't that your Oh, yeah.
I you know, we've heard that before.
Are you ready?
You ready?
If you didn't put it in writing, it didn't happen.
I may have heard that.
So so many times that I learned when I came to Ipony walked in the door was like, well,
what's in writing?
It was like, right.
Well, it's usually me walking in the office.
And and I will I really wanted I thought I was trying to be nice.
Right.
Like, I don't want to blow this up.
I just want to walk into the principal's office.
I got really good at going into the principal's office.
I just want to walk into the principal's office and have a conversation.
And how can we make this better?
And you know, I didn't want I thought putting things in writing, doing all that was going
to make it an adversary.
Adversarial relationship.
You didn't want that.
But that's what needed to happen.
Right.
Like, I needed to have that I needed to have.
We needed to have those facilitated meetings.
It didn't change anything about the outcome.
I don't believe to have a facilitator.
It changed the behavior of the people in the room.
Right.
So everybody was nice.
It is parents, if you do it, it's a little more scary because at that point, you've also
got the regional director and you got every person that's ever supposed to show up at
an IEP meeting, but never does has made themselves available there.
So I brought my mom.
I'm single and so I don't have a significant other.
And so I, my mom didn't have any experience with IEPs and didn't, but I was like, but
you can bring someone in a note taking capacity.
I would like you to sit.
And I still remember she actually, one of the comments she made is that one of the teachers
was saying that my son was refusing to do something.
And my mom, I still remember she stopped them and said, wait, that's not a correct term.
He doesn't have the ability to do this.
This is not a refusal.
This is not a behavior.
This is an ability issue.
And I appreciated that she was able to say that for me.
Okay.
Are you ready again?
Because all behavior, all behavior is communication.
It wasn't refusal.
It was communication.
I do not yet have the ability to perform the skill you are requesting of me.
There you go.
I said what I said.
I'm glad that she was there.
And I will just throw out for the record that sometimes facilitation can be more than one
meeting and sometimes that second meeting can have less members than the first.
Not that all IEP meetings in general aren't stressful, but sometimes that facilitated
meeting can be even more so because there are more people in the room, but they're just
there to make sure that the meeting stays on track.
Did you get that impression though that they were a neutral third party?
The facilitator was definitely a neutral third party.
We did have more than one.
They also put time, really strict time.
Oh, really?
Yeah.
So we had a very strict, like it will end at this time.
And I knew there was no way we would get through our issues in that time period.
So I was prepared for more than one meeting.
I would say it felt more like though the school versus me as far as sitting at the table.
So the facilitator felt very neutral third party, but it felt more adversarial between.
But at the point that we had this, we were at that relationship, right?
The police had already been called multiple times.
You almost wish you would have done it sooner.
But there was a lockdown that had been called.
I mean, we were at that point.
Another pivot.
You are a member of the board of directors for Idaho Parents Unlimited.
I'm curious if you could talk a little bit about that.
How long you've been there?
What do you do?
Are you hiring?
Sure.
So I am currently the vice chair and I am in my second term.
So terms are three years and I am I think a year and a half into that one.
So yeah, wow.
So it's been what, four and a half years?
And it was just it really was shortly after all of this happened.
And I will help me to get my son into a much better position.
I also own the sensory place here in Boise and I opened that again because of my son.
And you know, I'm honestly partly was because holding a regular job when you got a kid with
a million stuff going on is really difficult.
Absolutely.
So working for myself, I now don't make any money, but I can take my kid to 20 appointments
and be available if I need to run to school.
Right.
So we do that.
But it was shortly after I opened up the sensory place and I was no longer having to pick my
son up every day and I was reading all of the iPoll newsletters and everything that
came out because at this point it was like this is my source of information.
You were a groupie.
I was a groupie.
And I saw a thing that said, hey, we're looking for board members.
And I was like, that's what I'm going to do.
I'm going to join the board.
So I filled out an application and got a call and I said, sure, come join us.
I was like, well, that sounds fun.
So then, yeah, and I kind of, I really have, I hope I've jumped in and tried to do a lot
because I pull is out.
I mean, it really was a night and day changer for me.
Just knowing the steps, right?
I needed to know those steps and learning.
I use all the acronyms now for both the Medicaid system and the school system, but I didn't
before, right?
And it's really confusing.
And so being able to reach out, I know what I put, we talk about that people become your
person, right?
So for a long time, Sarah was my person.
So yeah, I'm, I appreciate that you guys no longer use your personal cell phones because
I was one of those people that would text her and be like, Hey, can you help me with
like XYZ?
Right.
And so I probably didn't give her the space she needed either.
But anyway, so I wanted to give back because I had, I had taken, right?
And it was like, well, let me, let me give back.
So that's what I do.
We did just recruit a whole bunch of new board members.
I'm super, super excited who just are coming on the board.
We just voted them in the last meeting.
So the next one will be their first like meeting with us.
Oh, I didn't realize that.
So we next one.
So we are doing, so at this point we are recruiting, but we won't bring people on again until the
spring.
Okay.
So I know people are, will are please send us your stuff.
Just know that it, you wouldn't officially join for until the spring time plan.
We're trying to do that more on a regular basis so we can provide some training.
Oh, wow.
I know we're trying to get all official around here, but bringing, we were bringing people
on sporadically and then to give training.
You can't, it was hard.
So yeah, you got to do it in batches, right?
So we're trying to make it a little more official.
If you're listening in Eastern Idaho, we could really use some Eastern Idaho and some North
Idaho.
We love all of you here.
I'm from the treasure valley and we love everybody in the treasure valley, but that's the easiest
for the recruitment purposes.
And we really want representation from everywhere because situations differ.
I mean, I've loved, I've, I've heard this before and it's always been lovingly about
the great state of Ada, right?
There are other places that have other barriers and other things to talk about.
And we need you here to express that.
So we know because the information that you as board members present and give trickles
down to the staff and parent education coordinators like me who hear this and say, oh wow, that
is an issue that I've seen in this particular school district or in this region of the state.
And I wonder if there's any, any training that we can do or anything that we can provide.
So like I said before, people aren't calling us because they're happy, but we also, we
also really benefit as an organization from knowing what's happening in these pockets
in these communities because at I-Pole there aren't any remote staff right now.
We're all in treasure valley.
We're all here at the office so we don't have those dealers out all the time.
So the more support we can get, we're here for it.
Yes.
And, and keep that in mind too.
We I now say we as an I-Pole board member, but we are all over the state and I think
sometimes people don't realize that.
So just because our office is in Boise doesn't mean that you can't call us from, I'm trying
to think a name of a town.
Bonner County.
There you go.
Sammon, Idaho.
You know, and, and I have, I have had that also just to tag on real quick where people
will say, well, are you, are you still doing in-person trainings?
And you know what?
We'll go, I would say 95% of the time we will always go if we can when we're invited.
But if we just show up, even if we promote it, if there's not a need, you know, if we
don't know about it, then we just show up and maybe people don't come and we've traveled
and we just want to make it way more purposeful.
So if you're an educator or a parent and you're listening and you know, and you want us, we'll
be there.
We're statewide, right?
Yes.
Any parting thoughts or anything you wish you would have known sooner or?
Well, I think one thing just to add on most all of our conversation has been around the
educational side.
And then, you know, I threw in a little bit on the Medicaid, but I didn't know initially
that I pull also does all of the training for parents around healthcare, Medicaid, developmental
disabilities programs.
And I don't know that everybody out there knows that.
So if, if say you go to your doctor, right, and your doctor says, Hey, well, your kid's
autistic or X, Y, Z. And so you qualify for this program and you're like, I don't have
a clue what you're talking about.
You can call I pull and they'll start you with, they can help you with both that medical
side and the educational side that you're going to need.
Absolutely.
Thank you for that shameless plug because, and also I think another thing just tagging
onto what you just said is that I've, people are often surprised when I say, well, everything
that you tell me is confidential.
It's, it's not, you would have to sign a release of information for me to talk to anybody.
So don't be worried or concerned that we are working with the school district or we're
working with providers and not at all.
We are our own nonprofit.
We're part of IDEA.
We're also the family to family health information center, but we're not in with any school districts
or anything like that.
So when you talk to us that that communication goes no further than this office.
Right?
Well, and I think just to add to that too, when we talk about doing facilitation and
calling the state department of ed to get that going, I've heard parents say, oh, obviously
they're going to be on the side of the school district, you know, and I don't, I hate sides.
Right?
Right.
Because it's about the child.
But that's not what the state department of education, they're not, when you call them,
they're not like, oh, we're on this, you know, you might anyway, they're not the side of
the district.
They're not a side.
They're this third party who helps facilitate things like facilitation and making sure that
their job is to make sure that schools are being compliant with the legal requirements.
So just keep that in mind.
But it is also all local control.
So the, and I know that not everybody knows that either in Idaho, every district gets
to kind of make their own rules.
They have to comply, but more on that later.
Okay.
Well, before we go, I just want to say sensory place.
Uh, amazing.
Every time I go, there's new stuff, stuff my children have not played with before.
There's more than one bathroom.
I don't know why that's such a huge draw for me, but it is, there's a small trampoline,
a large trampoline slides, a zip line.
You can have birthday parties there if you've never been.
Oh, before also, can you talk a little bit about how you can use?
Oh, your family.
Yes.
Yeah.
So yeah, the sensory places approved through Idaho's developmental disabilities program.
If you have gone the family direct route and again, we use acronyms here.
So if you don't know what that means, give us a call.
If I pull a call.
Um, but if you've gone that route, um, they do require that your child is currently in
occupational therapy.
And that's because we are seen as a supplement to occupational therapy, um, because everything
you're going to find at the sensory place, you would find it your occupational therapy
office.
So we bring you all of that specialized equipment so you don't have to buy it for home.
And try to find a place to hang a swing in a trampoline and whatever else.
Um, anyway, so as long as you have, um, occupational therapy, then you can put, um, we call them
sessions cause that's like health.
That's how health and welfare wants to see it.
It just means every time you come right is a session.
Um, then you can put how many ever annual sessions you want on your plan.
And then I bill it quarterly cause again, that's a health and welfare rule.
Um, but yeah, you can reach out.
We have, I've set up a specific email for it.
So it's family direct at the sensory place.com.
Just remember places spelled P L A Y C E cause we like to play.
And I will also put the link to that email in the description of this podcast too, so
you can find it there.
Well thank you.
Thank you.
I mean it.
Thank you so much everyone out there for listening in.
If you're in Idaho or planning on moving to Idaho and have any questions on systems or
services for children with disabilities, please reach out to us on our website at ipulidaho.org.
That's I P U L Idaho.org.
Be sure to come back next time until then I'm Allison and this has been unlimited parenting.
Thanks for listening.
I'm nay