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 is a very special guest and current IAPOL
intern, Caitlin.
Caitlin was a student supported by an IEP and is here to tell us all about transitioning
to adulthood from her perspective.
So let's get into the stuff and the things.
Welcome, Kaitlyn.
Hi, I'm so glad to be here.
How are you?
Doing pretty good.
Good.
How has this work experience been for you here at IAPOL?
It's been eye-opening and very educational and I appreciate the opportunity that you
guys have given me.
Of course, I appreciate you saying that.
It's been really great to have you here.
Is there a part so far that you've liked or you wish you could have changed or what
are your primary duties right now?
I'm working through a whole bunch of spreadsheets for you guys right now, auditing, and then
something that I've loved is just getting to sit down and hear your guest's meetings
and the processes and the true amount of care and support that you guys put into everything.
Oh, perfect.
Perfect.
So before we talk any more about that, can you tell us a little bit about yourself?
So I am diagnosed autistic.
I've been diagnosed with autism since I was nine.
It's a reoccurring diagnosis three times with a whole bunch of other mental health uniquenesses
and challenges.
I am visually impaired, going blind.
I have retinal dystrophy, which is not many people have it.
It's a little bit rarer than retinitis pigmentosa or stargard, which are very uncommon eye diseases.
Okay.
Also, I'm 20, so I just went through a very big transition.
Yes, out of school into the adult Medicaid side.
So I'm still in high school because I was forced to drop out because of some very awful
circumstances, but I'm eight credits to graduation.
Wow.
That's a huge accomplishment.
2.7 GPA.
Good for you.
So I think one of the things I wanted to ask you right off the bat is, I heard you mention
this the other day, that when you were younger, you didn't like the term disability.
No, so my family raised me to believe that I wasn't disabled.
I don't consider myself disabled.
I'm a person with unique challenges, just like everyone else on the street.
And I may have to do things a little bit differently, but that's what makes me special and unique.
And entering into adulthood, I've had to take on the title of disabled to get some accommodations
that I use on a regular basis, like large print or audio or a sensory friendly space
for myself.
So I've had to take on that term more.
And is that why you decided to start referring to them as disabilities just because you felt
like that was your way to enter the world of services?
It's more societal accepted.
So I tend to use that term more because it conveys that I have unique accommodations
and special things.
I love that.
If you had to change the word, what would you call it?
From disabilities?
Yeah.
If you wanted parents to refer to it instead of saying, you know, my child is disabled.
My child has uniquenesses and my child is unique.
I love that.
It really speaks to the broader idea of coming from a strengths based perspective and how
maybe that word disability is kind of taking, I don't know, a negative connotation.
To me, it's beautiful.
It's sharing that your kid isn't like every other kid in elementary.
Your kid isn't experiencing all of these things that they get to tell a special story, whether
they can tell it or not.
And it's a special outlook.
I love taking away a lot of the negativity.
I love seeing it from the lens that it's not a limitation.
Right.
It's just a difference.
It's what makes me special.
I love it.
I think another thing about you being here that has been really great for us as iPoll
and why I wanted to have you on here is we hear a lot about the process of transitioning
to adulthood from parents or providers or teachers.
But I'm really curious to hear what it's like for you as the person who was the center of
it going through it.
So first off, I saw this in one of your guys' seminars that I are teaching videos that I
watched.
It was, I can't remember the phrase exactly, but it was talk.
Don't talk about me without me.
Yeah.
Nothing about us without us.
Yes.
I loved that.
It's a permanent thing in my mind now.
Oh, that's great.
So I was a part of every psychological appointment.
I was a part of every part of my plan because I was in behavioral therapy from the age of
nine to 18.
I was a part of every Liberty meeting, every meeting with my TSC, every meeting with my
res hab company.
I've been there for everything and my grandmother refuses to even do a meeting without me in
attendance.
Oh, I love that support.
Yeah.
So when you say you're a part of these meetings, do you mean that you're also leading or facilitating?
I'm leading all of it with guidance because I don't know how to word properly, but with
every decision I say yes or no on.
So you've really been given the ability to self advocate.
Yes.
At the age of 14, I started taking over my behavioral therapy plans and by 16, I was
exclusively writing them with my grandmother signing them.
What about from the educational perspective, when you were in IEP meetings, how did you
feel about those?
Were you a part of that?
I was.
I grew up in a very rural school district in Idaho.
So I didn't have much IEP support, but I was still a part of it all.
Was there anything throughout the school IEP process or these meetings when you were facilitating
them with your providers and your team?
Do you feel like there was anything in them that really prepared you for being an adult?
The realistic side of it, what do you want to do?
How do you want to live?
Are you planning on going to college?
A lot of those conversations were led by me.
Do I want to work?
What services do I want to receive?
All of those processes I was given a lot of information on and I appreciated that from
everyone.
Do you think it would be fair to say that you felt supported by the team?
Yes.
Good.
It's good to hear that you had a really good experience.
I'm also kind of curious though about the flip side.
Is there anything that you learned throughout this process, whether that's from the healthcare
side with DD or behavioral intervention or from the school side in terms of IEPs, that
wasn't really helpful or that you felt that it made it harder for you?
What would you change I guess?
I didn't get a lot of help through IEP.
I had an IEP, but I found it really helpful to actually work through my teachers directly,
talking to them outside of IEP meetings and going, this is where I'm truly struggling
and this is where I need that support and help.
So learning how to speak for myself was a huge, huge benefit.
What do you think made the difference between the meeting and then just going to the teachers
on their own?
Was it just so many people in a room or intimidating?
It's a lot for anyone to handle on a good day whether they have a disability or not.
Absolutely.
But to add people on top of that and then have your principal, your superintendent,
your SPED teacher, sometimes a representative coming in from other services and then later
as a teenager having the blind included, the commission for the blind, it was a lot of
people.
Yeah, it definitely sounds like a packed room.
And teachers.
I had all of my major subjects.
Can you talk more about your experience with Idaho Commission for the Blind if people don't
know who that is?
Idaho Commission for the Blind and Visually Impaired has quite literally changed my life.
I got introduced to them from a friend that had a blind kiddo.
I got introduced to my first cane.
I have gotten a lot of independence that I thought I would never have with having this
diagnosis.
Wow.
So they were really instrumental in helping you.
And they're always there.
I can call them anytime and they answer my questions about what services mean for me.
That's wonderful.
Can I ask how you heard about iPoll?
And I mean that in terms of what brought you here to this internship?
What in the community are you using to get this internship?
Is it vocational rehabilitation?
So it's actually through the commission.
So I'm working with my director and she's absolutely amazing.
I'm working also with my vocational rehab specialist.
I'm messing up her title probably, but she's up in my district up north that I work with
on a fairly regular basis.
I want to change topics for a minute and ask what does the future look like for you?
In the next six months or in the next 10 years?
Oh, can I ask both?
Yes.
So I'm graduating high school as soon as I physically can.
And then I am going to be going to a program led by the commission for the blind and visually
impaired that's going to work on my O&M, my cooking, all of these life skills.
I'm even going to be able to do a wood shop under complete sleep shade.
Wow.
Yeah, I get to do like wood carving and mess with power tools under complete sleep shade.
And for those that do not know what a sleep shade is, it's a blindfold.
We just use a different term in the blind community for obvious reasons.
So it's just learning how to use different supports to navigate the environment.
It's a weird feeling.
I just recently read my first sheet of Braille, actually like three days ago, and your fingers
tingle.
It is the most surreal feeling to not have your vision and read something.
What about 10 years from now?
10 years, I'm hoping I will have my first guide dog by then.
I'm in the process of doing that.
That's why I have to get O&M.
I want to get into being more of an advocate.
That's why I'm with you guys, because I want to learn how to be an advocate.
I'm not an advocate yet.
I want to be.
I feel like I have to disagree with that.
I feel like you've been a great self advocate.
And that is the first step to learning how to be an advocate for others, right?
Yeah.
And then I want to get into legislation, education, and advocate.
That sounds fantastic.
And there's lots of room for you in that world.
And I have to say that you're doing a lot of the pre work really, really well.
You hear names when we have conversations and you say, who is that?
How do they help?
Can I have their contact information?
What would I do?
How would I reach out?
And I think that that's really great.
Yeah.
The big interest for me is service dog legislation.
I have a focus in that, that I want to do.
I want to pursue more autism advocacy and a whole bunch of other umbrella term, umbrella
diagnoses.
So do you see yourself training others on how to navigate life with the service dog?
I want to do education on how to appropriately act around a service dog.
A lot of our public doesn't know what having a service dog means or that that's medical
equipment that costs thousands upon thousands of dollars.
So if someone's hearing this and they want to learn more about that, do you have a resource
or a website they could go to?
Google.
Also, the ADA is a beautiful place to start.
Those guide dog organizations have a lot of useful information.
The ones that I tend to research the most, I'm not endorsing or pushing anybody, but
I tend to go to GDB a lot.
They're in Raphael, California in Boring, Oregon.
And then I'm right now looking at Guiding Eyes out of New York.
Perfect.
What about living independently and supports and services?
It's been a journey.
It's been hard.
Finding the right roommates has been interesting.
I live with two other ladies that also have unique challenges.
And then we have a staff that's in there 24 seven with us to help with any like things
that may arise to help with our support needs.
And has that been successful so far?
Yes.
I'm sure there are growing pains and struggles when you're learning how to live with other
people.
But for the most part, has it been a good experience?
It's been knowing that I have that help and support has been very freeing that I can stumble
and fall and there's someone there to help me back up.
Oh, I love that.
That that's all you need.
You don't you don't need the support to make it through.
You just need to know that someone's there.
Should you need it?
Yes.
And that's what everybody needs that.
Right.
Mm hmm.
What what what is something that you wish adults would know or do differently in regards
to youth who are going through this transition process?
I so my copay mechanism is I shut down.
So I would start curling in a mummy curling in on myself.
And then eventually I would wind up on the floor, like hiding under a table.
What what?
So when when the other IEP team members are in the room and they're seeing you do this,
do they stop the meeting and take a break?
Or how did you get support?
My grandmother would continuing continue it because even during those hard conversations,
I'm still actively listening.
I'm still a part of it.
I just may not be able to verbalize what I'm thinking or feeling at that point because
I've gone nonverbal.
It sounds like your grandma was a really huge support.
Oh, so big.
She's my second mom.
My mom unfortunately passed away over nine years ago.
So it's it's been she's been my second mom.
She's raised me all but six months of my life.
Oh, huge shout out to your grandma.
Yes.
Yeah, she's she's I call her every day.
She helps me with everything.
She's my legal guardian at this moment.
It's a process that we're both learning and growing in.
And you're doing it together and she lets you take the lead, which I think is really,
really amazing.
Is there anything that I didn't ask that you would like to share?
Not that I can think of.
Okay.
Well, I really appreciate you taking your time.
Yes.
Thank you so much, everyone out there for listening in.
If you are 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 IPOL
Idaho dot org.
That's I P U L Idaho dot org.
Be sure to tune in next time.
Until then, I'm Allison with Caitlin and this has been Unlimited Parenting.