Welcome to Unlimited Parenting where we discuss what it's like having children with disabilities
or special healthcare needs.
My name is Allison and today with me is my partner in crime, Melissa, and we would like
to welcome you to everybody's favorite podcast, Bring Your Own Topic.
This is a podcast series where I ask people to come in blindly with a topic and then we
are going to discuss.
Today is a little unique because it will just be myself and Melissa and we will discuss
topics that are completely unknown to one another.
She has no idea what I'm about to say.
I have no idea what she's about to say and we're committed to keeping the recording faithful.
So there should not be a lot of edits.
We're just going to roll with it.
I think that's what makes it fun.
And makes me sweat.
It makes you sweat and I have fun.
Okay.
I think it's only fair that you go first.
What?
Oh my gosh.
Okay.
Well, so this is a very light.
Well, it's kind of lighthearted.
Okay.
I want to know.
This comes from personal experience.
So and this could be a couple of things.
So where this came, there's so many qualifiers.
I'm scared.
Where this came to me was today when I was putting my child in the back seat of my car
and I'm like, what the crap is all of this?
What is this stuff?
Oh, in your car?
In the back of my car.
Okay.
Where my child sits.
My child with special healthcare needs.
Okay.
Uh huh.
So.
So I looked at the back seat of my car and it reminded me of what the bottom of our diaper
bag used to look like.
Right.
And I have graduated and we are no longer, I mean, he's still in diapers, but we don't
need a diaper bag anymore.
And that was hallelujah.
One of the best days of my life when we could give up the diaper bag.
But now it is all just in the back seat of my car.
And so it's not contained in a bag.
It's not contained.
What I thought I was giving up actually created more of a mess.
So I'm thinking I need to get some sort of a containment system now for the back of the
car.
Genius.
Right?
But I don't know if it would work.
The things in which I found, I have listed some of them.
And I just wanted to know if this was normal or if I am just.
You want me to tell you you're a weirdo?
I'm transporting pig pen around, I think.
I don't know.
I'm going to clean my car this weekend.
That's the other thing that I.
I always say that.
And then I have it for the last couple of weeks.
Okay, I'm ready.
So we have blocks.
We have so many blocks and beads.
They're beatable blocks.
So you know, my kid is obsessed with beads right now and they're the wooden beads and
the shoelace that goes through them.
So those types, they are everywhere in my car.
Do you want me to give you the equivalent of what's in mine?
Yeah.
So I don't have to use, but I have fidget spinners.
Okay, probably 14.
Okay, what I have chewies, a tangled mess of chewy necklaces that are all one blob right
now.
So my son won't use the necklaces, but he likes those.
I don't know.
They're probably like seven or eight inches.
They're like the munchkin for kids that are seizing, but they're the really long ones.
And they're not like Sophie the giraffe who had that one hole, you know, and then she
would get mold all up in her.
But these ones are they're hollow.
Do these ones vibrate?
No.
Okay.
We have that one too.
But since that one was $45, I try to watch it a little more closely.
You don't throw it on the back seat of your car.
The way I have seen my son get in the car and pick one off the ground and I go, you
know what, just buckle up.
That's where I'm going with this.
Just buckle up.
Oh my word.
That's I think how Reese's avoided COVID for his own.
I'm sorry.
I think that's how Silas gets everything.
So there are some, there were some French fries.
There was a half eaten English muffin that the peanut butter had been dried up on.
Okay.
I am not a disgusting person.
No.
No, this is the kids.
This is the kid's seat.
This is the kid's seats.
Mine has two weeks ago, we went to Starbucks for a hot chocolate and every time we get
out of the car, I say, Hey, I need you to, this is, this is a true, I don't care.
I mean, you guys can feel the way you feel about me.
Every time we get out of the car, I say, we need to get two things.
Let's just pick up two things.
And I know there are parents out there who say, you know, what we enter the car with,
we leave the car with and that everything always gets picked up.
That's a good idea.
I'm trying to survive.
I say, pick up two things.
And for, we're all in different spots.
I know.
I have for two weeks, I have been saying, please make one of those two things.
That Starbucks cup.
I am so scared to lift the lid.
And he goes, mom, it's totally empty.
And I'm like, I don't know.
I wouldn't believe that at all.
Hey, I'll come clean it out because I still can't smell from when I had COVID.
That's right.
I am the perfect person for that kid.
And maybe that's the other problem in my car.
My car might smell and I can't smell it.
And my not-for-full child is not telling me that it smells.
I don't know.
Maybe that's why he doesn't want to get in the car.
That's why school pickups.
It's so bad.
I don't know if this was...
No, no, no.
You're selling yourself way too short.
I've recently been in your car and it does not stink.
Thank you.
Yeah.
Now, appreciate it.
The big black, I don't know about.
Oh, I don't know about her.
No.
Well, my husband drives out.
I can't promise anything on that.
There's some sweaty shoes in there.
There's some...
Well, at least you can see out of it.
Your daughter's car, you can't even see out of it.
I hope she listens to this.
I hope she does too.
Anyway, sorry, go on.
The other thing I found were some progress reports that were shoved under the floor mat.
I'm like, holy moly, that needs to go in my IEP binder.
What am I?
Who am I?
I am a parent-centered employee.
That is not a filing system I should be proud of.
So I had...
It's the beginning of the year.
So we had to update all of our insurance and I didn't have my insurance cards on me.
So I foolishly said, I will take the form with me.
Yesterday, I turned in this form covered in coffee.
It was covered.
She was like, can you actually reread this number to me?
Because it's been...
And read it.
And I was like, I'm so sorry.
This is making me feel so much better.
I'm so glad.
Okay.
So there was some IEP stuff.
Oh, I have...
This you will not have.
I had...
A G-tube?
I have some G-tube supplies in there.
Yep.
Because you never know.
You just never know when you're going to need...
You just don't.
So that's true.
I don't have G-tube supplies, but can I tell you?
I have three sizes of diapers.
Because you never know for the next...
I don't have three sizes.
I just have three diapers.
Some of...
I also have to keep a spare set of shorts and underwear at all times.
That is such a good idea.
And I usually do.
And I don't have that right now.
I need to put that back in.
Can you imagine if we kept all of this in a bag?
That's my point.
So it used to be in this nice little container called a diaper bag.
And then I was so excited to graduate from the diaper bag, but I'm thinking it needs
more containment.
And I still need these things.
Yeah.
And I know a lot of people have big feelings on this and I respect that.
But Shein...
Shein?
Oh, whatever.
Oh, I don't...
And I know we're anti-consumerism right now.
Cheap plastic.
But there is something to be said about how cheap they have those storage containment.
If you go to Shein and you...car accessories or whatever.
Really?
Oh my gosh.
The stuff that they have on there is stuff I would have never...
They have car trash cans.
Okay.
And I can almost get behind that.
Yeah.
Because...
Absolutely.
What do we call those things on the doors?
The trash cans.
In our car, you want to...
You know where your straw wrapper goes?
In the door.
The most embarrassing thing I think that...well, not the most, but one of the most embarrassing
things that has ever happened to me is my husband of almost 17 years coming out to the
van and going, Jesus, he's taking out all of these receipts.
He's like, Panda Express twice in one week.
Are we going for a goal?
Yes, we are.
A personal best.
And I'm like, if you don't bring your negativity to me, are you just jealous that I didn't
bring you spring rolls?
Yes.
That's what it is.
I sometimes...
Oh no.
Those receipts, I throw those away though so that there's not evidence.
That's true.
I imagine...
I imagine in a mobile receipt from Starbucks.
If there were no children and our cars could be whatever we wanted them to be, you would
have honey in your car.
Yeah.
You would have...
What were you...
Okay.
You would have...
It's nature's amoxicil.
You would have honey and bread.
You'd have a bread box.
Mary, you'd have a bread box, honey, bread.
You'd have tortilla chips.
You'd have salsa.
You'd have a fridge where you can keep your salsa.
Are you going to say Cherry Coke Zero?
You know, Cherry...
I currently have that in my trunks.
I have to hide it in there for my son.
So that's where it is.
You'd have Taylor Swift.
Check.
I already done.
What is that called?
The thing that people...
Is it a windscreen?
You put it in your car when it's hot so the sun doesn't...
Oh yeah.
Yours would be Taylor Swift.
When she has that big purple dress.
All fanned out.
It would be.
Remember when she didn't...
I don't know if that's speak now.
Sorry.
Remember when she didn't brush out her curls.
I do, but that was back then.
That was the early 2000s.
None of us did.
Yeah, that's true.
They were the Utah girls.
Who am I?
Exactly.
To judge a billionaire.
So anyways, all this to say, I'm looking...
I needed some camaraderie to say that I wasn't alone when it came.
We have library books on the bottom of the floor of our car.
Homework.
Oh yeah.
At least three coats.
At least stuffies.
So many squishmallows.
I'm worried if we were ever in an accident, I could tell a first responder, there are
three kids in my car and they would be like, oh, we can find her the squishmallows.
There should be a kid attached to them.
Okay.
Well, I feel better.
I feel good.
I'm glad.
Now I want to know if you could have anything in your car that you don't currently have,
what would it be?
More cup holders.
I hate my car.
I have no team.
So what is my husband's car?
Big Black used to have so many cup holders and now my car has...
I do.
Your little car though in the back seat, does it have the thing that comes down in the...
Oh no.
What is the story?
Well, it has one of those things that comes...
Yeah, it's kind of a story.
It has a thing that comes down and you can access the trunk because it's an all-wheel
drive car that you can ski through.
What is this car that you can do that and the battery's in the back?
It is in the back.
What in the Germans' auto making is happening here?
Exactly.
And so we refrain from using that pull down because Reese will now throw stuff in the
trunk.
He can access the trunk.
He could potentially crawl through that.
So we don't encourage that access.
All I'm imagining is you're driving to McCall and someone is honking at you because Reese
has stuck his hand through the taillight and he's just waving at guys.
I would realize that he wasn't there.
No, of course.
But that's where...
Happen.
Yeah.
I mean...
Griswold family Christmas, that's where I've gone.
Absolutely.
That's why we don't use those cupholders.
So in a new car...
I want more cupholders.
You'd want more cupholders.
How many do you think?
There are six of you, so at least six.
Well, that's a four-seater car though.
My whole family is...
I guess we'd have to get a new car too, huh?
I would just want...
There's a roof rack.
Yeah.
I would just want...
I have two right now.
I would like four.
I would like one in the door.
Okay, so...
I would like a cupholder.
It surprises me that you don't have one in the door.
I don't.
Yeah, I have one in the middle, and then you can pull up my console and you can have another
in the middle, but then my arm hits it.
It's just not user-friendly.
I would like you to know, before I say this, that I bought this car used.
My minivan is a Honda Odyssey.
I did purchase it used.
The people who...
With 18 cupholders.
The people who owned it before me were total ballers.
I don't know what they did for jobs, but they had all the bells and whistles on this son
of a gun.
It's got these blackout shades.
Wow.
I know.
And my brother's going to listen to this podcast and go, that comes standard on a Honda Odyssey.
Oh.
They have blackout shades.
Calm down, Jenny.
Sir, calm it down.
For those of you who don't know, my brother is a manager at a car dealership.
Do you really listen to our podcasts?
Sometimes.
That's awesome.
Sometimes when I make them.
What great support?
Yeah.
And I share TikToks.
I was just about to say it and then I'm like, wait, what if that's not the place that he
works?
Oh, and the car also has a vacuum.
Oh, that's right.
It has a vacuum.
And when I tell you that the 2025 has a fridge, you know what I want?
You up with a loaner or something?
I know.
Rehaler.
You need actual perspective from a family.
Those Kia Carnivals.
Okay.
Goodness.
They're so bad.
But I have to tell you about this.
Okay.
The Kia Carnival.
Okay.
It's an 11 seater.
This 11 seat.
Hold on.
Hear me out here.
It's not sold in the United States.
Why?
I don't know.
But the Kia Carnival 11 seater, the seats can turn.
Like you know when you're on a metro and you're sitting the wrong way?
Yeah.
You get stomach sickness.
Maybe that's just me.
No, no, no, I do.
The way my son would spin in that son of a gun, he would just sit there and make the
chair spin.
Wait, it doesn't like lock while you're driving?
I'm sure it does.
I feel like.
But I feel like he would break it and it would spin.
And I'm almost like a tilt-a-whirl.
I realize that's completely unsafe.
Well, as long as you were strapped into that seat.
He's a specie-re-seeker.
And if he could spin in the car, it would make car rides so much easier.
So if you're out there and you're listening, can you make a spinning seat?
Kia, U.S. Kia.
Honda.
A spinny seat.
Hyundai.
Honda.
I don't know.
How many car, how many BMW?
Ford.
Jaguar.
Oh, GMC.
Chevrolet.
What are we doing?
I don't know, but my husband would be so proud of me right now.
OK, remember, I'm not going to edit any of this out.
We've got.
I guess it's time for my turn.
It is.
OK, now mine sucks in comparison to that.
You're the one that wanted me to go first.
I know.
Mine sucks.
OK, I wanted to talk about, and this isn't going to shock you at all.
I wanted to talk about something emotionally and politically charged.
Wah wah.
But for real, I do.
OK.
I want to talk about handling all of this change and moving forward when the future
is so unpredictable.
OK.
Because you want to talk to me about it.
I want to talk to you about it.
Everything is changing.
Yeah.
So there's a new administration.
Every time that change is, it's a big, it's a whole bunch of stuff.
I think more particularly, it's the dissolving of the Department of Education.
So families of children with disabilities, IDEA, it's not just a policy.
It's more of a lifeline.
Absolutely.
Like a protection that my child is going to receive a free and appropriate public education.
And I must say this, and I'm hoping that we're having this conversation and you're listening
to this conversation no matter where you fall on the political divide, because that's not
what this conversation is about.
You could be the most left leaning or the most right leaning.
That doesn't matter in this conversation.
IDEA existed before the Department of Education.
So let's just all.
And I don't think a lot of people know that.
I don't think a lot of people, and I don't think I knew that prior to three months ago.
I don't think I'd ever thought about it that way.
Yeah.
I mean, I've seen timelines, but I never thought about it like that.
I mean, like I said, it guarantees all of those protections.
And the thought of moving it to the Health Resource Service Administration, what does
that mean for service delivery, accountability, supports, maybe nothing?
Maybe everything stays the same.
Right?
We don't know.
And it just keeps you.
That is the whole point of this conversation is I don't know.
And I know that you know this about me, but maybe some of the listeners don't.
I hate not knowing.
She really does.
I can't believe that.
I hate not knowing what's coming next.
I hate not being able to plan and prepare.
And I know that a lot of people feel like nothing will change.
And that's wonderful.
And that's hopeful.
Hopeful.
Yeah, I hope that.
So I guess what I'm saying is, is that there are people out there listening right now who
feel the way I do about not being the best at navigating change and uncertainty.
I have some thoughts that I wanted to share.
But I wanted you to know where I was coming from when I was talking about this.
It's not about Trump.
It's not about Biden left, right, up, down, sideways.
It's not about that.
It's about I don't know what could possibly happen to my child and his supports if you're
having these larger conversations about disbanding things.
And I should you should be really transparent that we've had families reach out with these
very good.
And that's kind of why we're bringing that to you guys.
Exactly.
I think had these families have these conversations twice this week.
Someone has asked me, what does this mean for my child if the Department of Education
is dissolved?
Yeah.
And I said, that's a great question.
Let me think about it for a second.
And that's hard for us in our role as the Parent Training Information Center, because
we want to give families answers.
And for us to say we don't know is hard.
Yeah, it's gross for me to say and it's gross for me to feel because I really don't know.
And I know that there are people who are overwhelmed by TikTok, overwhelmed by the news, overwhelmed.
I am but I'm also talking about the other people in my life who are like, I can't handle
one more thing.
Don't just don't talk to me about it.
I'm apolitical at this point.
So we don't have answers yet.
That's the hardest part.
But the thing about uncertainty is that it forces us to think about what matters most
and how we can protect it.
So I guess what I'm saying is when you're thinking about what you don't know, you can
only think about the things that you can control and what you don't know.
So here's my thoughts.
Stay informed, but don't overwhelm yourself.
So knowledge is power, but too much information can be overwhelming.
So pick sources that you like and update yourself when you can.
But if even I hope that if even the people who are like, I can't handle one more thing,
I hope they've already turned the podcast off.
I hope they're already like, I'd rather listen to clean out the back of my car.
I'd rather do that.
Yeah.
Then listen to this.
So if this is too much for you, please turn it off and then take action where you can
and when you can if there's something you want to take action about.
So if you write letters, give testimony.
Yeah, that's what I was going to say.
Kind of pick something that you feel that you could be in control of and you share stories
about how this has impacted you.
Which like the this can be this whole I don't know what's happening.
There's so much uncertainty.
Excuse me.
It can be applied to the families as paid caregivers.
Oh, yeah.
Is it happening?
Is it not happening?
What do we do?
Are we sharing stories?
Yeah, I agree.
So I mean, it applies to that too.
Focus on your circle of control.
So I, Allison, can't control federal decisions, but I do have the ability to provide testimony
in my local community.
I can volunteer at my school.
I can attend school board meetings.
I can continue to support the families that call in and ask these questions and say, hey,
I'm right here with you.
I know it's hard.
I don't know what's going to happen next either.
Do what you can when you can where you can.
And I always love when I whenever I think about this, I always love that Mr. Rogers
when he's talking about how his mom always told him to look for the helpers.
Yes.
When things get overwhelming, we'll step back and look for a helper.
And then, you know, that's some that's some dang good advice right here.
Thanks, Mr. Rogers.
Lean on your community.
Lean on your friends.
If you don't want to watch TikTok anymore, tell your annoying friend to quit sending
you TikToks.
Maybe she'll listen.
Maybe she won't.
You never know.
I know.
But it's fine.
And most importantly, take care of yourself.
You are no use to anybody if you're not taking care of yourself.
Right.
Drink your water.
Right.
I guess the whole self care thing is getting kind of overdone.
It's like what do you need to do to just get from breakfast to bedtime?
Right.
If you need to put your head in the sand and tone to tune it out for a little bit, do that.
Do what's best for you.
Yes.
Because I have I've had to put my head in the sand and really kind of just focus on
my family and just focus on getting from breakfast to bedtime.
And you feel so much better.
I feel so much better.
So much better.
And I am starting to slowly start opening up again.
But I had to.
I had to close off for a little bit.
Because change always feels like a threat.
Yeah.
If you view it that way.
But it can also be an opportunity.
Yeah.
There you go.
What a good sound bite.
Thank you.
Yeah.
I'll be here all week.
Actually, I'll be here till five because it's Friday.
But yeah.
And then I won't be here on Monday because it's a holiday.
So that's right.
But I just wanted I just wanted to say that because it applies to a lot of things that
are happening right now because the legislative season is always hard and things are introduced
and then things are taken away.
And this personal care conversation that we're having in our state and even new administration
changes.
There's a lot of things happening.
And I know that some people are so excited for the change.
Some people are not excited.
No matter what, it's still change.
And when you're an individual who struggles with change, it's like, ah, it can seem like
the end of the world.
I saw a TikTok of this sweep, sweet adult who his trash day got moved.
Oh, from Friday to Wednesday.
And this this guy is like he's calling the city.
And in his home, they had referred to it as like cute, cute Friday or something.
And he's on the phone and he's like, I want cute Friday.
I don't want cute Wednesday.
And the mom had called the city in advance to let them know that her son would be calling
to voice his opinion.
And what I love is that she encouraged him.
You call your city.
You call your local officials.
You make your voice heard, but just know that it might not change.
And that's good to preface it that way.
And so he did exercise rights and I want cute Friday back.
And she said, I am so sorry.
I hear that you want to move to trash day.
But right now, this is what we've decided is best for our community.
And we voted on it.
And he very, very, very, very slowly navigated through that change.
So we can all do it.
I know.
I love that.
I'm going to show you that.
See, again, she does.
She wants to be off TikTok.
And I'm like, when we show you this video, I'm slowly coming around.
You're slow.
I got to get my algorithm where I want it.
I got to get it removed.
Well, I don't know who ruined it.
It's weird.
I don't know.
There's a person in the office next to me.
But I think at the end of the day, all of that is really important that change is hard,
no matter what changes, whether it's at the state level, the federal level, the local
level.
I mean, even some of our school districts are having a lot of change.
We saw change at the beginning of the year with different, you know, in the umpire, exactly
redrawing of some district lines and changing of schools and programs.
So change is inevitable.
I know that.
I don't like it, though.
I know.
And it's so weird to voice that opinion out loud because there is sometimes when change
goes the exact way I want it to go.
And then I'm like, but did we really have to do it so fast?
And it's like, am I ever going to make you happy?
No.
And I guess the short answer is no.
Yeah.
I think any kind of change just immediately sends my hackles up.
And I'm like, I can't.
Well.
But I can.
You can.
And I will.
Will.
And if you have any questions about it, you can call iPoll and we will share with you
all of the updated information.
We're all navigating this together.
Exactly.
Yep.
Exactly.
Thank you so much, everyone out there for listening in and know that if you are in Idaho
or planning on moving to Idaho and have questions on systems or services for children with disabilities,
please consider reaching out to us on our website at iPoll Idaho.
That's I-P-U-L Idaho.org or by calling us at 208-342-5884.
Be sure to tune in next time.
Until then, this has been Unlimited Parenting.
Thanks for listening.
And one last thing I want to tell you, because I couldn't get to the end of this book, but
I hope you have a good one until the very end, whenever and wherever it speaks.
OK, thanks for joining me.