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Welcome to Unlimited Parenting, where we discuss having children with disabilities or special

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health care needs.

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I'm your host, Allison, and with me today is a very special guest and current IAPOL

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intern, Caitlin.

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Caitlin was a student supported by an IEP and is here to tell us all about transitioning

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to adulthood from her perspective.

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So let's get into the stuff and the things.

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Welcome, Kaitlyn.

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Hi, I'm so glad to be here.

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How are you?

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Doing pretty good.

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Good.

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How has this work experience been for you here at IAPOL?

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It's been eye-opening and very educational and I appreciate the opportunity that you

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guys have given me.

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Of course, I appreciate you saying that.

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It's been really great to have you here.

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Is there a part so far that you've liked or you wish you could have changed or what

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are your primary duties right now?

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I'm working through a whole bunch of spreadsheets for you guys right now, auditing, and then

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something that I've loved is just getting to sit down and hear your guest's meetings

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and the processes and the true amount of care and support that you guys put into everything.

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Oh, perfect.

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Perfect.

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So before we talk any more about that, can you tell us a little bit about yourself?

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So I am diagnosed autistic.

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I've been diagnosed with autism since I was nine.

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It's a reoccurring diagnosis three times with a whole bunch of other mental health uniquenesses

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and challenges.

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I am visually impaired, going blind.

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I have retinal dystrophy, which is not many people have it.

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It's a little bit rarer than retinitis pigmentosa or stargard, which are very uncommon eye diseases.

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Okay.

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Also, I'm 20, so I just went through a very big transition.

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Yes, out of school into the adult Medicaid side.

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So I'm still in high school because I was forced to drop out because of some very awful

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circumstances, but I'm eight credits to graduation.

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Wow.

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That's a huge accomplishment.

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2.7 GPA.

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Good for you.

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So I think one of the things I wanted to ask you right off the bat is, I heard you mention

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this the other day, that when you were younger, you didn't like the term disability.

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No, so my family raised me to believe that I wasn't disabled.

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I don't consider myself disabled.

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I'm a person with unique challenges, just like everyone else on the street.

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And I may have to do things a little bit differently, but that's what makes me special and unique.

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And entering into adulthood, I've had to take on the title of disabled to get some accommodations

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that I use on a regular basis, like large print or audio or a sensory friendly space

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for myself.

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So I've had to take on that term more.

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And is that why you decided to start referring to them as disabilities just because you felt

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like that was your way to enter the world of services?

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It's more societal accepted.

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So I tend to use that term more because it conveys that I have unique accommodations

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and special things.

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I love that.

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If you had to change the word, what would you call it?

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From disabilities?

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Yeah.

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If you wanted parents to refer to it instead of saying, you know, my child is disabled.

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My child has uniquenesses and my child is unique.

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I love that.

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It really speaks to the broader idea of coming from a strengths based perspective and how

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maybe that word disability is kind of taking, I don't know, a negative connotation.

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To me, it's beautiful.

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It's sharing that your kid isn't like every other kid in elementary.

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Your kid isn't experiencing all of these things that they get to tell a special story, whether

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they can tell it or not.

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And it's a special outlook.

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I love taking away a lot of the negativity.

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I love seeing it from the lens that it's not a limitation.

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Right.

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It's just a difference.

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It's what makes me special.

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I love it.

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I think another thing about you being here that has been really great for us as iPoll

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and why I wanted to have you on here is we hear a lot about the process of transitioning

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to adulthood from parents or providers or teachers.

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But I'm really curious to hear what it's like for you as the person who was the center of

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it going through it.

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So first off, I saw this in one of your guys' seminars that I are teaching videos that I

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watched.

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It was, I can't remember the phrase exactly, but it was talk.

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Don't talk about me without me.

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Yeah.

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Nothing about us without us.

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Yes.

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I loved that.

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It's a permanent thing in my mind now.

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Oh, that's great.

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So I was a part of every psychological appointment.

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I was a part of every part of my plan because I was in behavioral therapy from the age of

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nine to 18.

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I was a part of every Liberty meeting, every meeting with my TSC, every meeting with my

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res hab company.

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I've been there for everything and my grandmother refuses to even do a meeting without me in

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attendance.

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Oh, I love that support.

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Yeah.

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So when you say you're a part of these meetings, do you mean that you're also leading or facilitating?

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I'm leading all of it with guidance because I don't know how to word properly, but with

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every decision I say yes or no on.

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So you've really been given the ability to self advocate.

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Yes.

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At the age of 14, I started taking over my behavioral therapy plans and by 16, I was

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exclusively writing them with my grandmother signing them.

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What about from the educational perspective, when you were in IEP meetings, how did you

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feel about those?

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Were you a part of that?

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I was.

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I grew up in a very rural school district in Idaho.

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So I didn't have much IEP support, but I was still a part of it all.

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Was there anything throughout the school IEP process or these meetings when you were facilitating

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them with your providers and your team?

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Do you feel like there was anything in them that really prepared you for being an adult?

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The realistic side of it, what do you want to do?

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How do you want to live?

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Are you planning on going to college?

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A lot of those conversations were led by me.

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Do I want to work?

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What services do I want to receive?

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All of those processes I was given a lot of information on and I appreciated that from

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everyone.

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Do you think it would be fair to say that you felt supported by the team?

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Yes.

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Good.

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It's good to hear that you had a really good experience.

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I'm also kind of curious though about the flip side.

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Is there anything that you learned throughout this process, whether that's from the healthcare

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side with DD or behavioral intervention or from the school side in terms of IEPs, that

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wasn't really helpful or that you felt that it made it harder for you?

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What would you change I guess?

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I didn't get a lot of help through IEP.

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I had an IEP, but I found it really helpful to actually work through my teachers directly,

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talking to them outside of IEP meetings and going, this is where I'm truly struggling

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and this is where I need that support and help.

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So learning how to speak for myself was a huge, huge benefit.

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What do you think made the difference between the meeting and then just going to the teachers

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on their own?

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Was it just so many people in a room or intimidating?

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It's a lot for anyone to handle on a good day whether they have a disability or not.

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Absolutely.

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But to add people on top of that and then have your principal, your superintendent,

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your SPED teacher, sometimes a representative coming in from other services and then later

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as a teenager having the blind included, the commission for the blind, it was a lot of

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people.

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Yeah, it definitely sounds like a packed room.

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And teachers.

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I had all of my major subjects.

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Can you talk more about your experience with Idaho Commission for the Blind if people don't

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know who that is?

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Idaho Commission for the Blind and Visually Impaired has quite literally changed my life.

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I got introduced to them from a friend that had a blind kiddo.

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I got introduced to my first cane.

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I have gotten a lot of independence that I thought I would never have with having this

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diagnosis.

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Wow.

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So they were really instrumental in helping you.

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And they're always there.

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I can call them anytime and they answer my questions about what services mean for me.

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That's wonderful.

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Can I ask how you heard about iPoll?

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And I mean that in terms of what brought you here to this internship?

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What in the community are you using to get this internship?

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Is it vocational rehabilitation?

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So it's actually through the commission.

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So I'm working with my director and she's absolutely amazing.

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I'm working also with my vocational rehab specialist.

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I'm messing up her title probably, but she's up in my district up north that I work with

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on a fairly regular basis.

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I want to change topics for a minute and ask what does the future look like for you?

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In the next six months or in the next 10 years?

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Oh, can I ask both?

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Yes.

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So I'm graduating high school as soon as I physically can.

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And then I am going to be going to a program led by the commission for the blind and visually

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impaired that's going to work on my O&M, my cooking, all of these life skills.

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I'm even going to be able to do a wood shop under complete sleep shade.

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Wow.

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Yeah, I get to do like wood carving and mess with power tools under complete sleep shade.

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And for those that do not know what a sleep shade is, it's a blindfold.

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We just use a different term in the blind community for obvious reasons.

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So it's just learning how to use different supports to navigate the environment.

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It's a weird feeling.

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I just recently read my first sheet of Braille, actually like three days ago, and your fingers

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tingle.

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It is the most surreal feeling to not have your vision and read something.

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What about 10 years from now?

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10 years, I'm hoping I will have my first guide dog by then.

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I'm in the process of doing that.

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That's why I have to get O&M.

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I want to get into being more of an advocate.

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That's why I'm with you guys, because I want to learn how to be an advocate.

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I'm not an advocate yet.

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I want to be.

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I feel like I have to disagree with that.

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I feel like you've been a great self advocate.

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And that is the first step to learning how to be an advocate for others, right?

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Yeah.

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And then I want to get into legislation, education, and advocate.

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That sounds fantastic.

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And there's lots of room for you in that world.

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And I have to say that you're doing a lot of the pre work really, really well.

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You hear names when we have conversations and you say, who is that?

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How do they help?

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Can I have their contact information?

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What would I do?

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How would I reach out?

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And I think that that's really great.

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Yeah.

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The big interest for me is service dog legislation.

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I have a focus in that, that I want to do.

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I want to pursue more autism advocacy and a whole bunch of other umbrella term, umbrella

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diagnoses.

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So do you see yourself training others on how to navigate life with the service dog?

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I want to do education on how to appropriately act around a service dog.

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A lot of our public doesn't know what having a service dog means or that that's medical

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equipment that costs thousands upon thousands of dollars.

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So if someone's hearing this and they want to learn more about that, do you have a resource

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or a website they could go to?

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Google.

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Google.

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Also, the ADA is a beautiful place to start.

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Those guide dog organizations have a lot of useful information.

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The ones that I tend to research the most, I'm not endorsing or pushing anybody, but

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I tend to go to GDB a lot.

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They're in Raphael, California in Boring, Oregon.

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And then I'm right now looking at Guiding Eyes out of New York.

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Perfect.

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What about living independently and supports and services?

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It's been a journey.

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It's been hard.

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Finding the right roommates has been interesting.

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I live with two other ladies that also have unique challenges.

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And then we have a staff that's in there 24 seven with us to help with any like things

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that may arise to help with our support needs.

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And has that been successful so far?

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Yes.

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I'm sure there are growing pains and struggles when you're learning how to live with other

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people.

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But for the most part, has it been a good experience?

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It's been knowing that I have that help and support has been very freeing that I can stumble

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and fall and there's someone there to help me back up.

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Oh, I love that.

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That that's all you need.

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You don't you don't need the support to make it through.

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You just need to know that someone's there.

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Should you need it?

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Yes.

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And that's what everybody needs that.

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Right.

253
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Mm hmm.

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What what what is something that you wish adults would know or do differently in regards

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to youth who are going through this transition process?

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I so my copay mechanism is I shut down.

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So I would start curling in a mummy curling in on myself.

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And then eventually I would wind up on the floor, like hiding under a table.

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What what?

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So when when the other IEP team members are in the room and they're seeing you do this,

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do they stop the meeting and take a break?

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Or how did you get support?

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My grandmother would continuing continue it because even during those hard conversations,

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I'm still actively listening.

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I'm still a part of it.

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I just may not be able to verbalize what I'm thinking or feeling at that point because

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I've gone nonverbal.

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It sounds like your grandma was a really huge support.

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Oh, so big.

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She's my second mom.

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My mom unfortunately passed away over nine years ago.

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So it's it's been she's been my second mom.

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She's raised me all but six months of my life.

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Oh, huge shout out to your grandma.

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Yes.

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Yeah, she's she's I call her every day.

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She helps me with everything.

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She's my legal guardian at this moment.

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It's a process that we're both learning and growing in.

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And you're doing it together and she lets you take the lead, which I think is really,

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really amazing.

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Is there anything that I didn't ask that you would like to share?

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Not that I can think of.

284
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Okay.

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Well, I really appreciate you taking your time.

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Yes.

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Thank you so much, everyone out there for listening in.

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If you are in Idaho or planning on moving to Idaho and have any questions on systems

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or services for children with disabilities, please reach out to us on our website at IPOL

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Idaho dot org.

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That's I P U L Idaho dot org.

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Be sure to tune in next time.

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Until then, I'm Allison with Caitlin and this has been Unlimited Parenting.

