Hello and 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, Kate Christensen.
We are picking up on the second half of her story.
I'm so glad that you've come back to hear the ending because she's going to give a lot
of great information.
So we're going to pick up right where we left off and I am going to segue right into Kate
talking about her experience with developmental preschool.
Starting the IT process like the transition from developmental preschool to elementary
school going to kindergarten with Mac.
I had a rough go, sweet little Mac.
The transition team wasn't going to allow the DDA, the person that was contracted to
work with my son at school, they weren't going to renew those contracts.
They were going to be working with another agency and I said, well, we just started this
part, right?
We're still, you know, this person knows my son.
I, you know, those are scary moments as parents, right?
Now I can kind of see the medium change and new people and it's more people to understand
and to learn about autism.
But the training, the changing of hands is still a very difficult subject because it's
like, my gosh, another person I have to teach how my son functions in this world and how
this world is not set up for him and what's the best way to help him.
So we went to that meeting and I want to say it was the last year of developmental preschool
because that's when we started this process and I was questioning whether or not to keep
him in developmental preschool.
And I said, the person who was our, she was the director for the preschool and then my
team for the new school.
And they were like, well, we don't want him to have his talking device.
We want to make sure that he actually is nonverbal.
We want to see how he does without it.
We want to make sure he actually is nonverbal.
Yeah, we want to make sure he actually needs it and we want to see how he communicates
without it.
Okay.
And this was my first experience in advocacy where I used my big girl voice.
I was very proud of this moment.
I'm still proud of this moment because I looked directly in the face.
Yes, Kate.
Yes.
I looked her directly in the face and I said, would you like me to take your voice box out
and see if you learn how to communicate in a month?
You want to see how that looks like for you?
Oh, powerful.
The whole room, I was so angry.
I'm pretty sure it wasn't a calm moment.
I was probably crying because when I'm angry, I cry.
And I turned beet red, like all the blood that could possibly go from any point in my
body goes to my face and my chest.
And so I look like I'm about to explode with just everywhere.
I'm so hot.
It feels like a hot flash.
And I know it's there and I know they're all looking at me like, oh my gosh, this lady
is about to explode.
And I'm like, I'm going to take your voice box out so you can see how you function day
to day for 30 days.
What do you think about that?
She's like, well, that's not really what that means.
And it really does because you're essentially saying that you want to take away the only
form of communication he's known that has been effective for him.
And you just want to see, like it's some kind of experiment.
And that was when I left that meeting and the person who worked with Max, she had just
casually said, hey, you know what?
You should contact I Go Parents Unlimited.
And I'm like, what is that?
And she goes, oh, well, there are places that can help you with all this stuff, with IEPs
and all that.
And I go, OK, where did these people come from?
Because I was leaving these people years ago.
And she's like, go ahead.
Here's the phone number.
I'm like, all right.
I called and I talked to a person who's not there anymore.
I spoke to her on the phone and I'm bawling.
Never mess this up.
I'm sure you get called like this all the time.
Never mess this up.
I'm bawling.
I'm not understanding how the meeting went so badly.
And she tells me, oh, it sounds like you might need a facilitated meeting.
I'm like, what is that?
What does that mean?
What else?
What new thing do I have to do now?
I'm just like, OK.
And she's like, don't worry.
We'll get this set up.
And we have to contact the State Department of Education.
And I'm like, OK.
I'm going to go to the State Department of Education.
And I'm like, OK.
And she's like, don't worry.
We'll get this set up.
And we have to contact the State Department of Education.
And I'm like, OK.
And she's like, don't worry.
We'll get this set up.
And we have to contact the State Department of Education.
Talk about the seat resolution.
And what they do is they have this facilitator.
And they'll come to your meeting and vote a lot.
I'm like, OK.
So how much is this going to cost?
Because speech therapy was already so much.
Before that, I was like, OK.
What does this cost?
She's like, no.
This is completely free to you.
And I'm just bawling my eyes out.
And she is sitting there being so gracious with me and understanding.
I told her, I'm going to go to the State Department of Education.
I'm going to go to the State Department of Education.
And she is sitting there being so gracious with me and understanding.
I told staff, I love you all so much.
You just get it.
When you walk this life, you just get it.
And at that point, I didn't know that this is who they were.
And so I was just so thrilled to just hear somebody and somebody tell me that I wasn't
crazy.
Or that you had options.
Or that what you're asking for is not like, this isn't wrong.
You're doing the right thing.
And so we had a facilitated meeting and the facilitator made it very clear that if I did
not want to put him in developmental preschool that last year that I did not have to.
And I, because his three-year eval was still going to be good.
So when we did the transition meeting to kindergarten, it would be just fine.
And he would still be, you know, we wouldn't have to do that process again.
And we could just write a new IEP.
I said, great.
Sounds awesome.
I don't want him to be with these people anymore who think that his, I don't know,
he's sometimes faking being non-vulnerable.
I don't know.
So I pulled him out and put him in HI, you know, a habilitated intervention for full
time for that next school year until we started kindergarten.
And we saw so much growth and especially with communication and really just focused in on,
you know, understanding how OT works in a classroom.
The functionality with communication between his peers, his teachers, the functionality
in a classroom of, like I said, what OT looks like in a classroom setting.
How to help him with, you know, compression clothing, weighted lap pads, bands at the
bottom of the chair, weighted pencils, all that, which OT is my love language.
And I'm actually, you know, realized where my passion lies.
Because like I had had a career before and I had gone to culinary school.
I was a chef and like a pastry chef.
Like this world was just like the total opposite of where I had come from.
And so just currently, present day, I'm attempting to go back to school to be an OT.
It has changed our whole lives.
I love seeing a kiddo go from not really knowing how to, how their body is in a classroom setting
and see them successful.
And I think there's just such beauty in that because we all don't fit in this box.
We all don't fit in these perfect little cookie cutter shapes.
And OT busts through those little boxes.
And it's like, no, let's try this.
Let's try this.
And I am eternally grateful.
I see chapter 7, I damn too, but there's just something so special about OT that has my heart.
And he went into kindergarten just ready.
Like he was so ready.
Like he's always been my oldest, has always been ready for like he's never been like a
like I said, he crawled early and walked early and got all these teeth.
And the second I dropped him off of these places, it's not like, you know, he's never been one to cling to me.
But bye.
He's ready for an adventure.
He was ready.
With Benjamin, it was a big ups and downs, big, big behaviors.
Lots of protesting transitions were difficult for him, complete opposite, of course.
So I was learning all new skills with Benjamin, but I did not get to learn with Maxis.
So we were, you know, learning about different language to use with Benjamin when it came to transition.
And what helped him was that first then.
So and I still use it to this day.
First, we're going to do an un-preferred.
Then we're going to do a preferred.
And that's how we slowly started to see his growth and progress when it came to doing things he didn't want to do.
He's an extremely literal kid.
He does not sarcasm has no place in his world.
And he he will tell you exactly what he's feeling, exactly what he feels it.
And we've had some real fun scenarios over the years with complete strangers when it came to, let's see, protesting.
Literal literal protest like I'm a very active member of my community and I enjoy participating in things that give us that right and ability to protest.
So I take him with me.
I take all the kids with me. But yeah.
So just recently we were actually walking in.
I was wearing a shirt because, you know, I wear these.
OK, shout out to this company called Kind Cotton Teeth.
They are a movement that creates these t-shirts that are for a huge group of lots of different bands, guns, not books.
But this is like this one's like my shirt that I'm wearing now.
It's like you are seen, you are loved, you are valued.
It's for Pride Month for June.
Then there's, gosh, empower, educate, like teacher t-shirts supporting our teachers, supporting.
There's so many different movements.
And then a percentage of the profits go back to getting books for kids in schools and they donate large amounts of books for schools.
And so I get this monthly t-shirt that comes.
And so I'm walking to the store with Benjamin and we're going to I don't know what store it was, but I'm wearing a t-shirt that says like love is love.
And, you know, something about I think it's not neurodiversity, but this one I think said love is love.
And it's got all the rainbowy colors.
I love wearing shirts because they're one, super comfortable and soft.
But two, I love the messages that they have on them.
And a gentleman decides to flip me the bird.
A complete stranger, complete stranger, flips me the bird.
And in front of your kids.
Yes, but Benjamin knows what that means because we've had to talk about it in the past because it happened at school.
You know, I have some fun conversations with Ben's teachers.
Oh, I imagine.
Benjamin sees everything and he looks and he stops dead in his tracks.
He says, hey, you can't do that.
That means this, right?
You know, he says the literal word and he's got a finger right off the sky.
Like that is a very literal person.
He's like, you can't say that.
That means this.
And that's not nice.
Yeah, you're breaking the rules.
I know.
And this person's face was like full of shock because he did not expect my sweet little 10-year-old boy to do that.
But we have talked a lot about, OK, that's a very powerful thing.
It sends a very strong message.
And this is what it means.
I'm always very honest with my boys about those kinds of things, especially with Benjamin, because he's a literal kid and he knows exactly what these things mean.
And this person didn't say anything.
And I'm like, I said, Benjamin, it's OK.
Like, it's all right.
Thank you.
It's not a nice thing to do.
And we're just going to go back.
And he just kept going.
That's not nice.
He shouldn't do that.
That is mean.
And I'm like, it's OK, buddy.
It's all right.
Let's go to the car.
So we get to the car.
And of course, in the car, my internal mom, I'm just like, yes!
I'm so pumped that my son stood up in that moment to understand that this was something that was ugly and gross.
And I'm like, don't say that.
And of course, I was going to ignore it.
I was going to ignore it.
Whatever.
But I was very proud in that moment of my son, because we involve our kids a lot in the process of IEPs.
And they are very much in those meetings and a part of that process.
And that, there for me, was his little advocate, his little ball of fire, as I call it, in the gut.
That is growing for him.
And it was just, in an ugly situation, it was a beautiful moment for me as a mom to see.
And of course, he still talks about it to this day.
Like, remember that guy who said this?
It's a core memory.
It is.
And plus, his memory, because of the echolalia and his ability to memorize things so vividly, I don't think he'll ever forget.
I don't think he'll ever forget it, honestly.
Echolalia is so incredible.
I've been to a couple of conferences, but I remember the first advice I ever received from our speech therapist about echolalia when it came to Benjamin, especially, she said, insert yourself into the conversation.
Because I said, he's talking so fast.
I don't know what he's saying.
I don't know how, like, because at first it was a bunch of like mumbling, right?
And he would like throw in a couple words that I could understand.
And so she's like, throw yourself into the conversation.
So like, when he started being more clear with his words as he got older, he would say, I want to go, you know, we're going to go to the market today.
And like, we're going to go to the market?
We are?
What are we going to get?
And he'd look at me, and he'd go, no, that's not what I meant.
That's not what I mean.
And I go, well, you said we're going to go to the market.
And he's like, well, I want chips.
I was like, you want to go to the market to get chips?
Yes, I want to go to the market to get chips.
So slowly, we started seeing that change from a scripted part of a show turn into his wants and needs.
So that communication changed a lot there for us.
So and we started noticing that all the scripts, like, even when he would say it and it was out of context for that scenario,
it was very much in context for the meaning behind the phrase or the sentence or the whole paragraph of what he was saying.
And like, wow, like, it's kind of incredible.
Like, he's using it in correct context.
He was always trying to communicate, right?
He was.
And I know part of me felt so bad because I was like, wow, I'm finally getting it a few years after diagnosis,
to where I could not.
I'm like, I want to know when you get in the car after school, I said, Ben, how was your day?
And then he would say something, something scripted.
I'm like, oh, buddy, that sounds amazing.
But I never knew.
But like now, when he comes home from school and he still is very much like, you're like a lot of kids.
But you know, how was your day? Great.
But I'll say, what did you do in class today that made you happy?
And he's like, oh, well, I got to go to, you know, I got to do this or I got to make popcorn or I was able to do.
Wow, buddy, tell me more.
And then he'll say, like, talking about tell me more, he'll still insert some script, but then he'll bring out some original context, too.
And so it's kind of like a mix of scripting and original context from him.
And it's kind of beautiful and I love it.
And it's not kind of beautiful. It is beautiful.
And I enjoy that part of him.
And I think finding the joy in like somebody else who doesn't have a kiddo, like, and just have like a typical conversation with their child and they give a typical answer.
And, you know, there's beauty in that, too.
But somebody who doesn't, it doesn't come as easily, I should say, that you really had to fight for to understand and to make sense of things.
I just it carries a different weight.
It does. It does.
And, you know, don't get me wrong.
There are days when I go to a store and I see a kiddo who is my oldest son's age who is telling their mom about their day and saying, hey, they really want this thing or that thing or this thing.
And or, you know, this is how my day went.
I was talking about a sports team that they're on.
I get emotional.
Some days it can be hard to see a version that I thought my child would be.
But at the same time, I am the mother I am because of him and because of everything that he and Benjamin and Samuel have all taught me.
And comparing myself to others, I learned very quickly, will not go very far to help your mental health at all.
100%.
And I did learn very quickly that mental health and taking care of yourself, either with medication or therapy or both, you know, they always talk about me time and taking a bubble bath.
I'm like, no, that's not my version of self-care.
My version of self-care is my therapy session.
My medication is self-care and making sure I'm taking my medication to help with my anxiety.
That is my self-care.
And I will forget.
There are days when I don't take it or a week when I don't take it.
And then I'm like, wait, what's going on with me?
Something feels off.
Something feels.
And I'm like, oh, no, I haven't taken my anxiety meds for a week.
Like what has happened?
And that affects a lot, too, because I'm the one that, you know, my husband is an amazing partner as well.
And he is very hands-on and he goes to all these appointments, too.
And in the beginning, he was my ride or die.
He still is my ride or die and an incredible partner.
And I mean, just everything that, you know, I know that it can be difficult for parents when you've got a kiddo with a disability and special needs can be very straining on a marriage.
And I will say we've somehow managed to find our solid ground with each other.
And, you know, they're in a difficult phase.
They're a difficult conversation sometimes.
And sometimes we're harder on Ben than we are on Max, but the expectations shouldn't be any different.
But yet sometimes we make those exceptions because he's nonverbal.
And I don't, you know, there's just something that's apparent. You make those choices.
And sometimes they're not the right choices.
And they call me out on it.
Well, would you do that for Max or would you do that for Ben?
Yeah.
I'm like, well, no, I wouldn't think for calling me out.
You know, like I try to hold the expectations high and for all my kids.
And the partnership has been so like I couldn't be the mom I am without my partner.
I'm just truly grateful for him on a day-to-day basis.
He truly is the best partner for me and the father to our kiddos.
So I'm very grateful.
It's a long road.
And like I said, that advice I got with the checkmarks and the taking it one step at a time is slowly over time.
I realized that that's the advice that I generally will give to parents now when I help them with the IEP process or with Medicaid or trying to figure out Katie Beckett.
I will tell them to one day at a time, one checkbox and just go down the list of what you need to do.
So when I started, when the boys are all settled in school and IEPs are going and my youngest was in preschool and, you know,
I'm starting to find my footing again is when I started to dive into helping other parents because I was like,
I never want to feel another parent to feel that way that I felt where I didn't know what to do or who to turn to or where to go.
So when I when I first had talked to I pull when that whole facilitated meeting happened, I said, OK, where can I learn how to do this more effectively?
Right. So I started going to training.
We had them in person then up here in the North. We don't have them up here in the North in person right now.
I hope to have them back one day. But the she would do monthly training.
I think I went to the IEP training, which is the same training every time.
You learn something new. You learn something new every time. I will say that I still learn something new every time.
I think I went to that training 12 times, maybe 15.
Wow. At least. And that's how I started to really understand the IEP process.
My rights as a parent, my son's rights, what that looks like, how to build an effective IEP,
how to, you know, create that really solid, strong, strength based IEP.
And that was literally all because of the training I received from Idaho Parents Unlimited.
It was all free. It was all free. And I was like, I just dove in.
My husband would come home from work. I'd go to the nightly training that we had at the hospital.
And then the next month, maybe it was an IEP. It was strength based IEPs or something else.
And I would go and I would learn and bring that home.
And I mean, I can't even tell you. Like I said, it had to be a dozen times at least of these trainings.
And so over time, just word of mouth, I would just tell parents like, here, here's what you can do to help yourself and help your child.
And I just started slowly being somebody that I would get random calls.
Hey, my friend so and so told me to call you to help. And I'm like, oh, great. Let's talk.
And that was my goal was to just be that first lifeline to where I could pass off to somebody who do more than me
or ask a question that I didn't know the answer. And that's how I started slowly to learn more and more.
And now over the last nine years, almost a decade, that's what I do.
And I will to this day still get calls. I take probably half a dozen calls a week.
You're so instrumental in your community.
Well, from parents who are just, you know, I started volunteering.
I started volunteering at the autism society locally.
And that's where I met a lot of people to and parents and getting to know, you know,
those families and getting to know that, you know, the ins and outs of, you know, I know this feels overwhelming,
but there's never a brick wall. There's always a fork in the road.
So we can always pick a path right. Like the brick wall.
You know, you feel like you're at the end, but there's always a fork. Let's choose this path or this path.
Which way would you like to go? OK, now there's another fork or another decision to make.
It never hits the end for me. I feel like there's always new ways to approach things.
So like I said, now I got a call just a couple of weeks.
This is last year, I think my the owner of our DBA agency is like, well, I've got a case manager to help and welfare who used to work for me.
And she'd like to be able to refer parents to you. I'm like, well, I'm like, I'm just a parent.
But if they need somebody to talk to quickly before they can get to the eyeful, that's like, yeah, absolutely.
And that's just kind of how I work. Like I've been a volunteer for 10 years and I love it.
I love being able to help a parent in that moment. It's my kind of therapy, honestly.
I when they call, I know what to do. OK, I know you're feeling frustrated.
Here's here's what you can do. Here's what you know, like I always practice.
Right. I'm not legal advice. I'm I'm a volunteer and I'm a parent.
And, you know, but here are your resources. And I think another good point to make here is that I'm not there to do it for them.
Just like you guys aren't with I-POL staff. Like you're not there to do it for them.
You are there to help educate them and guide them through the process and, you know, invest as you can.
But I think it's important as a parent to gain those skills, to do it for yourself and with your child.
Because if you have somebody there with you doing it for you, what do you learn?
What do you what are you going to learn from this process that this isn't a sprint.
This is a marathon. And you need to be able to accumulate those skills and know the routes to go.
When it's your turn. Like and I always tell the parents after I get off the phone or we solve some big problems, do this for another parent.
Like that is your that's your responsibility. Pay it forward to another parent who might be in this crisis.
That's all I ask. And if you don't know the answer, find somebody who does like call me or call I-POL or let's figure it out together.
And I think that's the that's the beauty in volunteering in your community.
But also if you've been a stay at home mom and you haven't had job experience for a number of years, this is how I gained, I guess, job experience.
But also felt like I had a place in this world that I didn't see coming.
And so this last year, this was in the last school year.
I had a friend of mine who's a special ed teacher here in our district.
And she told me she's like, you know, if I was looking for something, I was like, I can't be full time.
I can't like I just want to something that kind of like my kids are all in school.
Like I just would really like to, you know, maybe have a job.
But I don't know what that looks like. And she's like, what about substitute?
I think it's substitute teacher like teacher. I don't want to be responsible for a roomful of kids.
Like, no, you don't have to be you don't have to be like a teacher in a classroom setting.
You could be like a sub para. You could fill in on those days.
You could, you know, that kind of thing. You could figure out what works best for you.
And so she's like, just come to my on your first your first sub assignment.
Come to my school and I'll just kind of walk you through it.
And so she did. And I fell in love with it.
I fell in love with being a sub para, a one on one with with a student.
I did learn very quickly that I cannot work in a classroom with the similar behaviors and struggles I have at home with my children.
And as much knowledge as I've gained over the years of working with a nonverbal, behavior,
understanding the ins and outs of that for my own mental health.
I wasn't able to do that at work and do it at home.
Boundaries are important.
Yes. And that is something very new that I had learned in therapy in the last four years of being in therapy.
So as beautiful as these programs are and how grateful I am for these teams of people,
I couldn't be that parent in those those classrooms or those settings with those students.
And I'm so able to give advice and to be able to help in scenarios, but full time, even part time, I saw that it was not helping me.
So I ended up finding a school here locally where my youngest goes and they have a student who was meeting a one on one.
But I'm so sad I don't work for the district.
And they said, if you could give us a couple days a week, a few days a week of working with this student, you know, we can schedule for the rest of the year.
And it just gives you two, three days a week.
And, you know, I said, huh.
So I went to work with this student and the first day on the note and said, this student will not like you working with him at all.
And I was like, oh, thanks for the warning.
And that was back at the beginning of this semester.
So it's only been this last semester that I started working with this student.
I will tell you what this kiddo is one of my favorite kiddos to work with ever.
And he requests me.
He had gone to which he received an IP this semester and he has gone to his IP meetings because of me basically discussing with him what an IP is and how important it is for his education.
He's a little older. He's, you know, and, you know, not kindergarten, first grade.
But I was able to help him understand how important that IP was.
Like, you know, like this document is here to help you.
Like, it's here to help you.
And he's like, no, it's not.
And so I like, I like it down for him.
I'm like, look, here's all the specifics.
Like, you want to go over it?
He's like, sure.
But we talk about it and we we talk about the importance of goals and goal setting.
Like, you're doing great.
He likes to see the data.
He likes to see how he's doing on a day to day basis.
And I show him I'm very clear.
Like, today has not been a super great day.
Can we can we turn this around?
And he sees the data.
He's like, oh, OK.
And he'll you know, he understands like where he's in and his day and how how we're doing and where we're going.
And so next year, I probably request to be with him again for a couple of days a week and have that consistency because I do I really do enjoy even on the bad days.
I enjoy like on the rough days when he doesn't want to do work at all.
I I enjoy his perspective.
And he's taught me so much on seeing the other side of the fence when it comes to the IP process.
And you're just in the classroom.
Go ahead.
I was just you're just so passionate about it.
I love it.
I love the IT meeting.
I look I mean, there's some like this last year, I was a little anxious about this transition to middle school for my oldest son.
But after being in the school this year and seeing our tremendous educators in our district, especially like my friend who works at the high school.
She sits down with her students and they go over their goals like she's like very much like look at this.
What do you think about this goal?
How does this goal make you feel?
Do you think this goal is reachable?
Like what is your true perspective on this?
And I was sitting down and I was just observing and I'm like what a phenomenal educator she is.
But how that can like grow with that like be a part of the discussion.
Be a part of this document that gives you and supplies you with a path to your education and and what that looks looks like in a classroom setting.
And so I just I truly appreciate the IP and I I after seeing educators and how they're to implement them in a classroom.
It gives me a new perspective on what's realistic and what's not.
What's an IP as well? I mean obviously we set goals and we you know realistic goals and we try to make that work.
But I mean these teachers in my district we have some amazing, amazing Fed teachers and Gen Ed teachers.
We've had some rough ones.
When I lose the good ones and we lost the good one last year she left and went to work for another Idaho agency.
I'm all like a baby.
I'm all like a baby because when you find your people and you find the people who speak your children's language as I like to say you don't want to see them go.
And that's hard.
But I do know and have come to appreciate the change is also good for my children because we need to actively involve more people in understanding neurodiversity.
Acceptance of these diagnosis of all disabilities and to see that our children have a place in school in this world and in a world that wasn't designed for them.
And I am like I said working with the students and you know in the school and being able to be around these kids like that's how I decided I wanted to be an OT for myself.
And I'd be able to be in these classrooms and work with these students and see that progress.
And I'm just it's just it can be a beautiful process.
But I know there's a lot of struggles and I know a lot of parents have a lot of difficulty with their teens.
And I just want you to know that there is beauty to this process and that they can be cohesive beautiful strength based plans that your children can thrive on and just learning to bend with some of my like I thought it's like
this is not the ins and outs of learning this process. You have to bend a little right. You bend. It's a marathon not a sprint. And they're always changeable.
If something doesn't work let's fix it. What's another way to go about this. That's kind of where my strength lies. I never want to. Nope it didn't work. It's all done.
Like I said I don't have a brick wall I hit a fork in the road. So absolutely. Here we go. And it's definitely clearly one of your strengths.
And I just want to say truly you know thank you so much for taking some time to just really talk about it. Yeah. And your story is it's going to help.
Hopefully you don't get hundreds of people flooding your phone but
I love it. I love when I get a call from I mean I say love it but when a parent is in distress and they call and they don't know what to do. And by the time we get off the phone.
They'll say oh my gosh that was so incredibly helpful or wow I didn't even know that existed.
That's where I get my joy from your payment. It is that that's you know and I do get paid now by the district as a sub which is nice.
But there is a beauty in being this volunteer is somebody not having to worry about where this like it's a little bit like all right now so you don't have to pay for our services you know and so there's a beauty in knowing that you can get help that you need
without having to fork up some cash for it like like we should we should just be able to like I just need a little help a little help to know how to navigate this.
And it's in the right direction.
Exactly. So that's that's my goal is to never let another parent feel like I did where I didn't know which direction to go and I tell you what, when I first got my hands on a set of Eichel pamphlets.
I took it straight to that pediatrician's office that we no longer go to. He didn't know where to send me when my son wasn't talking. I took stacks of pamphlets and magnets and pens and information.
And they're a huge office up here. I mean they have a ton of location. And I just said you know, I don't want another parent to feel this way. I don't want them to know not where to go.
And now I'll do that in my doctor's office down there. He had a flyer on the wall for some organization for autism that literally, I went to the website while I was sitting there waiting, and it said website not available.
The doctor comes in and I was like hey, he's like how are you doing? I'm like great, that website doesn't work. And they're like, well what do you mean? I was like I just typed it in and it doesn't take you to anything.
And if a parent has made information about autism, I really feel like that would be a little frustrating. So I came back and I brought a bunch of pamphlets and I brought a bunch of pens.
And you know, it's just like the little moments and being effective in your community and making those small effective changes to making sure somebody never feels that way.
And that is my goal. How I became part of the board was I went to parent leadership back in 2018. So I signed up. I was like okay, teach me all the things.
I had been to like a dozen of these IEP trainings. I'm like a week away of just nonstop learning. I'm like yes, sign me up. Signed up, did the interview, got accepted.
Had this really beautiful week up here in La Clee, Idaho, which is up by Sandpoint. Met some incredible women that I will never forget.
Their stories, their families were still very much connected and we'll use each other as resources often.
And I put in my little one of these little books Sarah made, of course, that has like all the little quotes and little things that Sarah makes because that's what Sarah does.
Of course. Sorry, she's one of the Eiffel Stats here. And she made these little booklets and it was like writing down our goals. Like what were some, you know, in the next five years, what are some goals for you?
My first goal was to be an Eiffel board member. And I didn't know what that looked like. I just know I wanted to be involved to an organization who had given me so much power and like knowledge that I was like how can I pay this back or how can I pay it forward, I guess, essentially.
So I was like, I don't know what that was. I've never been a board member to anything in my life. I thought the only thing I know about board members is like from TV where it's like you wear a power suit and you go to a sky-rise building and you're like running a company.
I didn't know what a board member looks like. I didn't even know that nonprofits had boards. I was completely clueless. And at the time, I don't think they were taking any board members. So I didn't have that opportunity then. But I did join a local organization, the Autism Society of North Idaho.
I served on that board as vice president for I want to say three years. I served my term there. And then in the midst of my term ending with them, I interviewed Freypole and became a board member. And in my first meeting with elected vice president, and then I became president and now I've been the board chair for a couple years.
I thoroughly enjoy it. I enjoy watching this organization grow. I enjoy watching staff members grow in their areas and like learning more about them and their families and what can we do systemically? What can I do to advocate as far as that goes?
And that's when I learned about partners in policymaking, which then I joined last year and did partners in policymaking, which incredible program. So I did that for a year, you know, and then graduated this last, I suppose that 2020, 2021, I think, and met some of my favorite people in the whole world through that program.
And under really understanding systemic advocacy and policy changes and writing letters to legislators and making effective change here in Idaho and what that looks like and actually putting it into action. What do you do next?
And I love that about you.
It never stops. It's just okay, well I've conquered this and now where else can I help?
Yeah, where else can we help? Where else can we go? Who else needs a little guidance? Who else needs a little love? But it's like, I want to learn more too and I'm growing too and that's why, like I said, going back to school to, it's going to take me a long time with my kids and life and stuff, but
going back to school and OT, which essentially sent me from spec, like I said, I was a chef and a pastry chef. So if we could go from one career to another that has nothing in common, it's these two careers.
But like I said, in the last 10 years of being in OT's offices and being in those appointments and how many hours of OT I've done in the last 10 years with my sons, I feel like this is my calling.
This is where my heart is too and all this other work that I've been able to do and the volunteer work and the boards and all that information will only help if we, you know, going forward because I can pass that information on to other parents.
Like, hey look, you know that this organization is available to you if you have questions or need extra help. I'm just, I'm very well versed in my community and what we have to offer. So if a parent does come up with that, that's what I'm here for.
And I, you know, I know parents sometimes other kids age out and they get older, thus they stop, you know, not as active as you once were. And I don't know if that'll happen one day, but I will always be available to guide that person in the right direction because I will never let another parent feel the way that I felt in the beginning of the diagnosis process for my children.
So my kids are thriving. My husband has epilepsy, so you know neurodiversity is very much in our home. That's just who we are as people and as a family and you know I go into the schools and we talk about diversity and read books and I bring, I used to bring
the Sesame Street books, the Julia books, I used to bring those to kindergarten classes. So we could start at the beginning, you know, like kindergarten, let's talk about, you know, differences among our peers. And so one day you need a book for your family and how to discuss what autism is or what disabilities are in general because that book talks a lot about other disabilities as well.
And there's another phenomenal book that I love for children. It's called Just Ask, but she had type 1 diabetes and so when the child, she would have to do shots and give herself injections and things like that.
And her biggest thing as a child with diabetes was saying that I just wanted people to ask if they had questions. And it goes through a ton of different diagnosis. There's a, you know, in a wheelchair, there's a person with nut allergies.
I want to say it probably goes through about 10 different diagnosis, I think maybe less. It all comes back to Just Ask. And I read that book to a couple of classes and then I actually had a couple teachers in first grade and kindergarten who asked to borrow it.
And I've actually bought a few copies for some of these teachers so they can keep it in their classrooms year round. But I, this book really does open the conversation to what makes us all different.
But just because it's different doesn't mean it's wrong. It's different. We can all, we're all different. We're all living in this vast world of just people who are living their own very authentic self life and we should try to learn as much as we can about each other.
And so that's me in a nutshell. That's our family in a nutshell.
I know, I know, I am so, I'm so just you're just truly inspiring and the amount of effort and time that you put not only into your kids not only into your family but into your community.
And I pull on the board, and we're just so lucky and thankful to have you and we're just so proud of you and we know that when you're done with OT and you're ready to just be your own therapist in your practice you're gonna have people knocking down the door.
Yeah, I love what that looks for me, like for me, yeah, I'm like I, I love the school setting and love watching the OT and just as a shout out to my child.
He is my oldest. So he, he tested out of school based OT services. Okay, direct, direct OT services.
He now has indirect but I told the OT I said look, she's like he's writing his name beautifully he's doing all the things that qualify you for OT direct services right like the threshold for that is like what 7% and you have to qualify under the 7% window in the state of Idaho.
And we got to the IEP meeting this last you know just last month and she's in there and she's telling me she's like, well, I don't need to do direct services with him anymore because he's, he's met his goal he's doing beautifully in the classroom and he doesn't need my direct services anymore.
I'm so thrilled. Like, as much as I love OT, and as much as I love this OT. I said, does he get a certificate.
Like, this is, we've never graduated from anything yet I'm like, so I just literally this morning I took out his backpack look through his binder and she had made a special certificate, just for Max saying he had graduated from OT.
That's the sweetest.
And it's just so sweet and I, I love the school based OTs and I love.
I don't know if that's something that that will be in the future or private, you know, working with kiddos like in a clinic or something but all I do know is that OT has made a huge impact on our lives and our family and in all of this I mean, I pull OTs speech
and I just see a vast amount of people who have to see them as the beautiful people that they are I could not be any more grateful to them. And, yeah, what they've done for our family and the joy that they bring to my children because my children want to see these people.
They want to see them they want to be, they want to be with them and I couldn't ask for anything more.
Well, 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 I pull Idaho.org that's
I pull Idaho.org be sure to come back next time huge thank you to Kate for joining me today until then I'm Allison and this has been unlimited parenting. Thanks for listening.