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 guest, Jake.
Jake is the father to several children, one of which has a disability and is a member
of our board of directors.
So thank you for carving out some time to share your story with us.
No problem, Allison.
And this is Jake's first podcast experience.
So thanks for sharing that with us too.
Yeah, hopefully I won't cough or spit on the mic too much.
If you do, they're easily washable.
So no worries there at all.
So you were just here actually for our board meeting and you reminded me that you had yet
to be on the podcast.
So I appreciate you remembering that.
Yeah, I'm really glad to be here to help out and do anything I can to help out the Ipullians
and their good work.
Especially being a dad, we never have any dads who want to share their story.
So having said that, can you share your story?
Sure.
So when my son was two or three years old, we noticed that he started exhibiting some
stimming motion, some flapping.
And we also had noticed that his overall muscle tone and his physical capability was a little
bit diminished.
He was a later child and so we had kind of seen our other kids and how they had developed.
And so that led my wife more than anybody else to question and to say, you know, what
could be happening here?
I think I was a little bit more apt to just say, well, he's still developing, you know,
other kids do this.
Let's just see where it goes.
But she was more adamant and thankfully because of that, we started to kind of look into what
could possibly be some diagnoses for him.
And so in our church community, we had another family who had had a very, very similar situation.
And that was really helpful for us because it allowed for us to have a roadmap for where
to go and what to do.
And we even ended up having the same occupational therapist and going to the same diagnosis.
We got a diagnosis from the same provider.
And it was really helpful because at that stage, again, we didn't have a lot of experience
with this.
I was questioning as to whether or not it was necessary or not.
And with talking with them, it really helped us to kind of feel out what is more normal,
what would be more something that would be helpful in this area.
And it also helped that the father of that child was our child's pediatrician.
So we had a lot of things break really, really lucky in our way.
I've talked to a lot of parents after this and we've tried to help others to understand
this as well.
And we understand how fortunate we were with some of the things that broke our way.
But that allowed for us to pretty much have a recommendation almost immediately.
We went and when we had his diagnosis, it was a really interesting procedure because
he had the whole battery day's worth of tests.
And it's literally a full day.
Yeah, it's a full day.
And so we'd gone through all these tests and we were waiting in the waiting room.
They said, we're going to go back and talk about it and then we will come back and let
you know what's going on.
And we were waiting and waiting and waiting.
And finally, one of the providers came out and said, we haven't forgot about you.
This is just a really unique situation because typically there's three areas in which they
test for autism.
There's cognitive, there's physical, and there's social as I understand it.
And they said, we don't, we usually see two of, if you have two of the three, then you're
diagnosed with being on the autism spectrum.
And they said that my son, he felt like he had scored lower.
He had scored fine in the cognitive and in the social he was borderline and in the physical
he was...
That was...
He needed support.
Yeah, he needed support.
And so the combination was something that they hadn't really seen a lot.
And so they were kind of discussing that and talking about that in an interesting way.
But essentially he ended up getting his diagnosis and from there we started him on occupational
therapy and later he had some counseling, some other things.
He's had a lot of different supports and things that he's had over the years and it's been
really, really great for him.
We've noticed now years and years later that he's kind of our kid that we joke that he's
our most self-sufficient and most self-determined.
He's a kid who if you can offer him an extra piece of cake and if he's full, he'll just
be like, no, I'm good.
Or like, no, do you want...
You can have this.
He's like, no, I'm good.
He's the kid and when he's good, he's good.
You have a child who says no to cake?
I have a child who says no to cake, to other things.
I mean, he's just...
He knows his potty.
He knows his place.
He knows what he wants and he's totally cool with that.
And it's really great because it allows him to express himself and to be himself in a
way that sometimes our other kids struggle with because he's not worried about what other
kids are thinking or doing or he doesn't need to go with the flow with everybody else.
I mean, that being said, he is really a social kid.
He really has a lot of friends.
I mean, he does really well with that, but I've always been really envious of that superpower
that he has of just knowing exactly...
Of going through the world, being your authentic self without any wherewithal of how that affects
other people or even like, oh, did I say that?
Did that offend that person?
He's just living his best life.
This is fine.
And we really credit an early intervention into a lot of that because we've seen how
he's struggled with some of the things he's gone through in his life.
And we've always just said, could you imagine if we didn't have the supports and the assistance
that we've had, where would he be or how would he be doing right now?
And with our other kids, they've had other neurodivergences which haven't led to a full
diagnosis, but they've also had therapies and other things.
And so we've seen kind of been able to compare and contrast how they've all worked together.
And it's been really, really an interesting perspective to kind of compare them all.
But yeah, with my son, he's definitely benefited from those interventions.
Can I ask what kind of interventions he was receiving and were they in the community or
at school?
He received a little bit of both.
He started with a developmental preschool.
And so he started there.
He also had started with just occupational therapy.
I want to say he might have done some speech therapy.
And it's kind of just been as time has gone on, those have kind of changed.
Or fallen off.
Fallen off.
And he had some struggles with some pretty severe anxiety a couple years ago.
And so he was able to go to counseling and really worked through a lot of that.
And that was really great too.
And he's no longer needing that as well.
And I think that's about, he did have, he was on a 504 plan at school and he had an
IEP.
And so he's had the school interventions.
That's something that I think is really interesting is that when he was at school and having those
interventions, we were kind of always geared up to kind of go to war for, we wanted to
advocate for him and worried about what if they do this or what if they do this.
We've had really good experiences with his agenational providers to be able to really
look for his needs.
And actually that has allowed us to, at times where we thought that a certain intervention
or a certain type of accommodation was necessary, there were times where we actually, after
talking with the providers and talking in those meetings, we realized that we could
probably ease out a little bit on that.
And that actually ended up being really well.
It's been an interesting thing for us that in my personal perspective on this, it's hard
to know sometimes when to really fight and advocate.
And other times when we've kind of let things, we decided to, okay, let's see how this plays
out.
But a lot of times it's actually played out fine.
I think that's been something less than the I have one just kind of to pick your battles.
And there's one time where we realized that we had asked for him to have a certain teacher
and that teacher, that didn't happen.
And so he was going to be in a class with a brand new teacher she had never taught before.
None of his friends were in that class.
And we learned this pretty much the-
The day before.
Yeah, the day before school.
And that was something, and we'd had these experiences before.
So we really, my wife and I talked about this and said, okay, so is this something we're
going to fight on or is this something we're going to see where it plays out?
We really felt strongly that we really needed him to have more familiarity before in this
context.
And so we went to the principal, we talked about it, we were able to get it worked out
and it worked out just fine.
Fast forward a couple more years, he was going to get a teacher and we weren't sure how that
was going to play out because one of our other children had had that same teacher and we
knew kind of the dynamics.
But it actually, we thought, you know what, let's let this one ride and see how it goes.
And he thrived in that class, he did really well.
So-
And it almost makes you wonder if it's because early on you gave him the extra support that
he needed and then now he was at a point where he was able to self advocate.
And because is it safe to say that he probably struggles with transitions and things that
are unknown?
Yes.
That happened to my son, not to make this about me, but earlier this year, almost the
exact same scenario happened.
And I said, hey, I trust you guys.
You've done really great so far with all three of my kids and I appreciate it.
We'll see how this goes.
And then a weekend they were like, we're thinking about moving him to another teacher.
Is that okay?
And I was like, yeah, absolutely.
Let's move him.
I have a couple of questions if that's okay.
And then I'll let you go on.
Where is your son in birth order?
He's not the oldest.
Is he the youngest?
No, he's the second.
Second.
Okay.
Do you think that that had a big effect?
Let me ask it another way.
When I was younger, I did not have any experience with other siblings or children.
So when I had my first child, I didn't really notice right away that something was really
different.
Did that have an effect if you had more children before him?
It was easier to compare and notice where he might have some differences?
Yes.
I think that was a really good way for us to compare and contrast.
My wife also has a degree in elementary education.
Oh, wow.
Okay.
So she had had some experience with teaching and had seen other kids.
She had, I think that's why she picked up on it a little quicker.
She was able to say, this seems a little different than these other kids that I've worked with
or that I've understood and known about.
And again, having that family in our church community where we knew that he had that neurodivergence
and that diagnosis, that we were able to talk to his parents and say, we're seeing this
in our son.
Can you tell us what you saw in your son?
And that was something that we were able to.
So again, it was very fortunate to have that.
But I do think it was really helpful for us to have a first kid and to say, okay, there's
some things here that are different than with our first kid.
Okay.
That makes sense.
I'm also curious.
You are, again, the first person, not only our first dad, but also a first person to
bring up an experience with the church.
So if it's okay to ask it against Tommy, if it's not, I'm curious, was that a really warm
and welcoming or did you get the impression that people were maybe less likely to talk
about what makes their kids different?
Or was it just because that that individual was also the pediatrician and also kind of
maybe more connected to your family?
I think that this family was a great family in a lot of different respects.
They're really outgoing.
They're really advocated for their son a lot.
And so it felt like it was a very natural role for them to talk to us and to advocate,
not just to advocate, but to educate us and to belong.
So as a general rule, I didn't feel like in the church community, it's kind of like everywhere
else.
You have people who get and understand other people who say things that are off or make
comments that are hurtful or it happens in our own families to you, right?
Yeah, definitely.
That's what I mean.
It's not this is across the board.
Sure.
Okay.
But I felt like this family was taking an educational role for us because they could
see how we were going through the same thing.
And so that was really where that and lots of support.
Yeah.
And I think that, you know, and that's something that I've tried to emulate and to do because
when I have, because we've had now people come to us and say, Hey, we know that your
son has this.
Can you, we're concerned or we have this question about our kids.
Like, what can we do?
You're the mentor now.
Yeah, it's really beneficial.
And first thing I tell them is go to iPoll, go talk to them.
And then the next thing I tell them is, you know, whatever experience we can give.
We appreciate that.
But I think that that's, you know, so much of this is understanding that you're not alone
in it because you feel alone in it and you feel like your kid is, I mean, there's a whole
bunch of questions that come up.
Like your kid is different than all the other kids, your kid, what does this mean for them
in school and in their lives and all these other things.
And so it's, it's just such a great opportunity to talk to somebody else, to have them say,
Hey, you're not the only one.
You know, your child is special, but they're not special.
But I feel like, you know, there's a lot of opportunities to be able to say, you're going
to get through this.
And not only that, but, but like I was saying at the beginning, it really, I really appreciate
the fact that I'm able to tell other parents who are struggling with this to say like,
look, our kid, my son is, is thriving in what he's doing.
And it's, and it's great.
I'm so excited for him.
And yeah, there are still struggles and there have been struggles in a little way, but he's,
he's doing so much that I think it helps other parents to see that and to say, Oh yeah, this
is not just going to be doom and gloom for, you know, it's not an educational death sentence
or, and I think that that's, you bring up a really good point at whether it's church,
home, school, as long as you continue to see the strengths in the child or the student
and you remind them and you build from them exactly like you said, anything is possible.
Yeah.
Two, two more questions.
Sorry.
Is, is your son elementary or middle school age?
Middle school.
How has that transition been for him from elementary school to middle school?
You know, we were really, really worried because, were you?
Yeah.
Because like, like I said, he is very, he's very self assured.
He does his own thing, but that also means that sometimes he misses out on those social
cues.
Sure, sure.
So we were concerned about how he would integrate in a middle school environment because we
all know what middle school was like.
It's terrible.
Yeah, it's terrible.
And so we, at that point he had gone off of his, and I can never remember what's the main
educational and is the IEP.
And the IEP is more, more regulated and than a 504.
So 504 is just accommodations and IEP is the adaptations and accommodations.
So he had actually in elementary school, he had gone off of his IEP and gone to a 504.
Wow.
Okay.
Towards the end of his elementary school experience.
So when we went to middle school, we still had some 504 meetings, but they were, but
it was much more relaxed because he didn't have as many accommodations.
Okay.
And we went to the first 504 meeting a couple months into school and we were just, my wife
and I went in and we're just like, okay, we're going to see what we hear here.
Cause you know, we asked him and he's like, school's fine.
I'm good.
Of the standard.
And that's a very, that's a very typical kid answer, right?
It was great.
We had lunch and now I'm here.
Hi dad.
Yeah.
He's like, we did this and I talked to this kid and it was great.
So we went in and we just said, okay, so how, how's he doing?
And they were all, he's the greatest kid.
He volunteers.
He works.
He's, he's always working with other students.
You know, he's, he's, he's trying to answer questions and he's keeping up on his homework
because that was our biggest concern.
You know, it was the organizational component keeping up on the schoolwork.
You know, he was, and so he was doing really, really well.
And, and you know, we asked, how was he doing socially?
Does he seem like he has friends?
And like, oh yeah, he, he interacts well with the other kids.
And so it was a really, really good transition for him.
The only answer you wanted, right?
He's the glowing angel.
You're like, of course he is.
Glowing angel who actually, you know, does have friends too, because that's always, that's
the flip side.
I think that's where I kind of went when I was in junior high was I was, the kid was
always trying to answer the questions.
And so that kind of rubs some people the wrong way.
You were Hermione Granger.
And so I feel like he really had the benefit of, of going through that and then, and just
transitioning really well.
A benefit to that also was that his sister was also, his older sister was also at the
school.
Oh, okay.
So he had backup.
He kind of back up and he would kind of see her here and there and that was good.
But, but no, he had, he, he, he had a good transition.
He's been doing well in the middle school experience, which has just been really great.
Good.
And the reason I ask is a lot of families, they are very concerned about what happens
when they move to a bigger school where the children leave their class to go to another
classroom and have different teachers.
So I think that's going to be really reassuring to a lot of parents.
And then we'll have you back when he, when he moves up into high school to see if that
trend continues now that he's part of my longterm study, right?
Yeah, we will see about that.
I'm also really curious about family dynamics and I know that he's not the oldest, he's
not the youngest and that some of your children might also have some sensory or neurodivergence.
How, how has that been?
Do you, and I think the reason I'm asking is because in my personal family, my youngest
child looks out for her older siblings so much.
And if there are things that they're not quite grasping right away, she immediately jumps
in and mama bears them, like shepherds them to where they need to go.
Is that, do you have a similar experience?
You know, the dynamics are interesting because like I said, my son is very self-determined.
So he has a morning routine.
He goes in, he does, he packs his lunch, packs his computer, gets everything all set up and,
and he just does that.
And at nighttime, it's the same thing.
He kind of gets his, when he has his routines locked, he just does his own thing.
And so I think for that reason, his siblings don't really feel a real need to kind of jump
in and do stuff for him because when it comes to those things, he just takes care of himself.
He sounds like he's like clockwork, like you could set your time by him.
Yeah, no, you, you kind of can.
We'll jokingly say it'll be 8 30 and we'll be looking around because you know, our other
kids are all, they're doing their typical kid thing where they're trying to stay up
as late as possible.
An hour to brush their teeth.
And we look around and I'm like, where, where is he?
And he's down in bed because it's, he's tired.
Because that's what we do at 8 30.
We are in bed.
He's tired.
He got ready for bed.
He goes and gets in bed.
So, so there's less of that dynamic.
And interestingly, where our other kids have also had therapies and things like that, I
think it's helped to normalize those interventions.
And so, okay, less seen as something unknown or different.
Yeah.
And different.
It's just kind of like, oh, this is what we just part of growing up.
Yeah, we do this.
We, we go to the occupational therapist, we go to the counselor and, and, and it's actually
really helped because where other kids have asked, why, why am I going to this counselor?
You know, we were able to say, oh, well, your brother did that.
And he's, and I know, yeah, I guess he did do that.
And then we can kind of show and point that out.
And now look at all the things that he can do because he went and was able to talk about
it.
Right?
Exactly.
Can I ask how you found iPoll?
Because from your story so far, it sounds like everything went along really, really
smoothly and there weren't a lot of hiccups.
Yeah, no, we were, again, this is a super rare blessing from heaven because there's
no way that, I mean, I've talked to enough parents to know that our story is.
You're the outlier.
The outlier.
Um, and, and I was actually trying to go back and remember how I heard about iPoll.
I believe that I got on an email mailing list or I had heard about, um, like a lunch training,
like a lunch webinar.
Um, and I'm an attorney, my profession.
And so there was something that popped up, might've been through family advocates and
the free program like that.
And I remembered I, I got on the email list and I signed up for a, like a lunchtime webinar
training.
And I was really impressed with what I had heard and seen.
And so I just kind of kept following along with the email list and kind of, I'd sign
up for trainings here and there.
And I was just really, really impressed with what iPoll does.
And in my mind, I kept thinking if we didn't have the opportunities that we had had and
the families that were placed in our path and, and our experience, um, I would have
really loved, like iPoll would have done all of that for us perfectly.
Um, being able to talk with other parents, being able to understand the different interventions
and the different accommodations and supports that are available.
And so, um, I was looking for something personally that I could volunteer, give of myself.
Like, I felt like that was something that was lacking in my life.
Even though you were an attorney by profession and a father of four children, you were like,
what else can I do today?
What else can I do?
I'm bored.
Um, no, it was, it was more of just, as I understood more and more about what iPoll
did, I really appreciated that mission and that they weren't necessarily going out and
advocating for parents because as I said before, I feel like sometimes if you go in with your
mindset on one certain outcome for your child, that can sometimes be detrimental.
Like there's times where you have to fight and there's times where you have to listen
to give something a shot first.
Yeah, exactly.
And so I really appreciated that that was iPoll's strategy and that is their methodology
is inform, educate, provide the tools that if you need to fight, you know, kind of where
to go and how to do it, but to not have that be just, you're going to get what you want
for your kid no matter what, a hundred percent.
And so that was kind of where I just kind of kept, it's kind of lurking background and
getting a lot of the benefits of the education and those things.
And so I decided to see if there was an opportunity for a board position.
And so I applied for that, talked with Angela, again, really appreciated her perspective
and her attitude and strategy for the organization.
And I just really been really grateful to be a part of it to help out where I can.
You're definitely very helpful.
You're always here every, every board meeting.
And I think as someone who has the luxury of having an office right next to the main
meeting room, there are some really good discussions where I'm like, I don't even think I would
have thought to have said that because not only are all of the board members active in
their community, come from all different kinds of professions, but we're all parents of children
with disabilities.
And so it's just really unique to have all of us in one room and go, oh, you're so right.
Or what a great idea.
Maybe I could do that for a podcast or we'll make a webinar about that.
Or I hadn't even heard that yet from our community.
And we're from all over the state, right?
Because I pull doesn't just serve Ada County.
Yeah.
And I think, I mean, I always learned so much.
I always feel like I'm the guy at the meetings.
He was taking notes.
He was like, I got to realize what that acronym means.
And there's so much knowledge that comes out of it.
And I hopefully throw out some ideas once in a while that are helpful.
But there's so much that I've learned from this and from, like you said, interacting
with the other parents, interacting with the staff here, and just kind of opening my eyes
to a lot of different families' perspectives and their experiences.
Because it helps me give a wider appreciation.
I came to the work of art reception, which was so incredible to see these kids and what
they had done.
What they make.
It's so mind blowing.
It is way impressive.
The talent.
Yeah.
And just seeing like, it's things like that.
And so I got onto the board because I just thought, well, this is a great organization.
I'd like to help out as much as I can.
And let's just see where it goes.
And then as I learned more and more about what I pulled in, I was like, oh no, this
is a really, really, really cool organization.
We just took it to the next level.
Yeah.
There's so many cool things that are happening.
And so it's just a really great opportunity to be able to contribute however I can.
And especially from a lens of knowledge that you already had, because you already had that
experience as a parent.
I'm curious to know where you think iPoll could go or should go for the future.
Is there anything that stands out to you?
Well, I think at our last board meeting, we did an assessment of, it was like a nonprofit
assessment as to like, we looked at, it was like a matrix.
And it said, is your nonprofit financially and leadership wise?
And it was like on a spectrum of one to five, like one being deficient.
Oh, okay.
And what I remembered seeing was that there was two classifications and one was like,
it was something like rising up or ascending, you know?
And as we all kind of took this on our own and compared notes, it was really exciting
because I pulled it to this stage where it is, I feel like it's primed and ready to really
just take off.
Blast off.
Because it's, the foundation is all there, like the staff is all there.
And as you're looking at what's organizationally happening, it's, you know, we're starting
to build out into more funding and more, I think it's really watching Angela's role go
from more of kind of in the trenches, working with staff to being much more administrative,
but then facilitating a lot of those other things that can happen.
And so I've been really excited because I feel like with some additional push and some
additional, you know, like we're making good relationships with other organizations, we're
being recognized throughout the state and throughout the region as really being a beneficial
program.
And those things just seem to be growing and building on each other.
And you know, when I came onto the board, I think it was 2020, so you know, there's
a lot of people in the middle of COVID.
He's COVID.
It wasn't until we had that train like a year, maybe a year and a half later when I actually
met people in person.
But it was interesting because we kind of were struggling to have board members and
we were, and a lot of our talk was how do we recruit more board members?
And in the past six months, we've had four or five just excellent board members come
on who have heard about us and who have come on and are bringing a lot to the table.
And that's really exciting from my perspective.
I agree completely because I'll walk in the room and I'll be like, well, not only do I
not know half the people sitting here, but then when I meet them, like the background,
everyone is so different and brings so much.
And some people have had the opportunity to get services in several different states.
And so we can chat about, you know, compare and contrast what that was like.
And then, I mean, unfortunately, if I remember correctly, you're still the only guy.
So there's some area of opportunity there.
Shout out to you guys.
Tell your husbands.
No, I think, but that has been really cool to see the, just from the board's perspective,
the board growing and seeing what the staff are doing and how they're able to develop
with what they're doing, like with what you're doing with the podcasts and everything and
all these other opportunities that just EIPL has to grow.
And so, like I said, taking that survey, it was really cool to see that, you know, there
wasn't anything, I don't think there was anything that was deficient or like needs work.
It was all like going up and rising or doing well.
And so it really feels like there's a really good vision and there's really good opportunity
to kind of grow EIPL to be a really, really strong leader in parent advocacy and education.
That's really, really, really exciting, especially to hear from a board member, because we say
it to each other all the time, like, we're doing the best, we're going places.
But then to hear it from someone who's on the fringes.
Yeah.
We really appreciate it.
Any parting thoughts or words of wisdom or any other pieces of your son's story that
you didn't share that you want to pop in?
I think the main thing is just that you have to have faith in your own intuition.
You have to have faith in the providers around you.
You have to have faith in your child.
And when you, like, I think it's a very easy thing to worry a lot about what your child
should have or isn't having or, you know, where they aren't right now.
And I've just learned that for me, the more that I do everything I can and then kind of
balance it with what everybody else is doing as well, and just kind of trusting in those
people around you that you know you can trust in.
I think you made that point earlier when you were talking about your child and how, you
know, the providers, the education, the educational providers said, hey, let's try this.
Right.
And you said, I've seen how you care about my kids.
I've seen what you're trying to do.
I can trust you to maybe do something that wasn't my game plan to come in with.
And I think that trust has to be earned, obviously.
Like, you can't just, you know, if you're feeling that you're...
Because that's, again, that sometimes is an outlier.
There's a lot of times where educational system, and we've had it in our situation too, where
sometimes they don't get it or it's not working out.
But where you can trust in those people, I think, you know, lightening that load by saying,
you know what, let's do this together instead of I have to have all the answers.
It's a psychological burden that's lifted.
And I think it just helps your kids to understand that it's...that everybody's pulling for them.
Exactly.
Yeah.
Lean on people if you have them, right?
Mm-hmm.
Couldn't have said it better myself.
But I think it's cool.
Thanks so much to you out there for listening in.
If you are in Idaho or planning on moving to Idaho and you have any questions on systems
or supports or services for children with disabilities, please reach out to iPoll on
our website at ipulidaho.org.
Be sure to come back next time.
Until then, I'm Allison, and this has been Unlimited Parenting.
Thanks for listening.