Welcome to Unlimited Parenting where we discuss what it's like having children with disabilities
and or special health care needs.
My name is Allison and today I have with me Melissa and Sarah and today is Bring Your
Own Topic, everyone's favorite, favorite podcast.
The podcast where I make my coworkers uncomfortable.
So let's begin.
Melissa, would you like to start?
What topic have you brought to the table to discuss today?
Recently it has been the summer, we had the Olympics and it's been very sports minded
in my family lately and so I was thinking as a special needs parent all of the Olympic
events that I could participate in.
I'm an Olympic medalist in a lot of areas and I was going to tell you guys about them.
So Olympic gold medalist toenail clipper.
I'm Olympic bronze medalist at Giving Medicine with whipped cream because there's a new one,
it's a new event that I just started shooting for the stars baby girl.
I think I can get there.
There's a little boxing that happens.
I don't do actual hitting.
I just get hit.
So I'm good at dodging a lot of punches, kicks, throws.
Maybe it's more MMA but that's not an Olympic event.
There's some break dancing that I think some of that happens unintentionally just when
I'm trying to like my moves are not good and they're not choreographed but they happen.
So I very much look like an Australian lady when I am break dancing because it's not real
break video.
It's a good one.
And then I know that this is not a, well I was trying to figure out how to do this.
No I was trying to figure out what kind of Olympic event this could be but it was more
of just after bath time it's very much like wrestling a greased pig but it's a wet body
that you're trying to get a diaper and pajamas on a moist body and it's hard but we're really
good at it.
Yeah, no.
So I just was bringing some humor to this topic and I wondered what other Olympic events
that we all are curling.
Curling the luge.
Everyone can all do the luge.
Oh, oh, oh, track.
Yeah.
There's some eloping that would be very much a track event.
Some high jumping height.
Oh yeah but not the guy who had the accident when he was jumping on that guy.
I mean if it was the Olympics is the dog the agility track when you're like, hey, that's
not an Olympic sport.
Oh you're right.
And then cross country.
Where Kevin Hart and Snoop Dogg were narrating the Olympics or whatever.
They were in first place.
Yes.
Yeah.
I have to tell you I know this wasn't part of our topic but really that was one of my
favorite thing about the Olympics is Snoop and Kevin Hart and their commentary.
I just want people to make it funny.
I do too and that's where I am today.
So my Olympic events that I enter into I don't interwillingly enter them.
I'm just a participant that has to.
Because I'm the person that sits on the couch eating popcorn mixed with M&Ms and a big
old coke watching the Olympics like really that's the best dive you can do.
So you would be judging my toenail clipping and you'd be like really you could do a little
bit better.
You're still using the baby toenail clippers.
Sometimes I have to wait till my kids are asleep.
Yes.
Or medicated.
Yeah.
That's a good one.
I am being so for real.
But maybe that gives me an unfair advantage if we are talking in terms of Olympics sport.
No doping.
And okay I have a real question.
And this is not my topic but now that we're talking about it I really want to ask.
So this may not be politically correct but I'm giving it my best shot.
You know how when you play a sport and maybe you get a little delay or you get some extra
support and they call it a handicap.
Oh like in golf as I think too.
This player gets a handicap.
Are we doing away with that at any point?
You're the sports person in my life.
I play sports that have handicaps though.
Okay.
Okay thank you.
So it's not every sport.
No.
They don't call that in every sport.
Absolutely.
Nothing.
Just golf.
It's just golf.
Okay so are we going to deprecate?
Like do I need to start a petition to get rid of that term?
Because I maybe.
Okay so my husband does watch a lot of golf as well.
I know.
If you need a minute to let that sink.
I'm really sorry.
That surprises me about your husband.
I know.
Okay I apologize.
I mean no ill will but I'm in a shroud in a mystery.
He's in the closet watching golf.
Golf just seems like the most boring sport to watch on TV.
It is.
It's okay.
You know what though?
Maybe this is just basketball.
I can't watch basketball.
I just recently found out that there are two teams on a football team.
She did.
No hear me out.
Hear me out.
Yes gotcha.
So when was the last Super Bowl that had Tom Brady?
It was a few years ago.
Okay thank you.
A few years ago the last Super Bowl I watched.
I looked at my husband and we're not alone.
We're in a party.
There are multiple people around us.
And I said wait a second.
The Patriots are out there.
Where's Tom Brady?
And my husband goes he's on the sidelines.
It's not his turn to play.
What do you mean it's not his turn to play?
I thought he played the whole game.
And actually if you're my kid on the high school football team you play both ways.
I do.
We confused her.
So in high school you can play both teams but college and pro you can't.
Well you could if they want you to.
But there would be reasons that you wouldn't want.
You know what this is why I like IDEA.
There is no maybe potentially perhaps.
This is what it is and this is what it's not.
Call me a black and white thinker.
I wouldn't call you that.
That would be rude.
I know but okay so.
So that I just I want you guys to know I'm an Olympian.
You are.
I bet you could also do some of the hand eye coordination sports because you're like throwing
clothes in the laundry hamper.
Yeah or like diapers in the waste basket.
Table tennis is at the Olympics.
Yeah sorry listen.
But really table tennis is in the Olympics.
This show is called Allison doesn't know anything about sports.
Episode 85.
I think yeah we could have multiple.
Yeah we could.
We could just have episodes about what I don't know.
That's not fair.
All of I know.
You primarily are sports based.
I could read a book about it.
You was the 84th man to die in the mosquito bowl.
Okay.
Anyways I'm Olympian.
Was that you?
Me that was me.
Olympian Melissa.
Okay but if you added all of your score together would that put you silver medal because I
heard you say you wanted one bronze.
I just said I'm not good at the medication giving yet because my kiddo has primarily
always received his meds via his G tube and we now have a new one that he has to take
by mouth and it has been a challenge but we're getting him.
I can't believe I didn't send you this tick tock.
I saw a tick tock last night.
I stumbled on the disability talk and I'm so happy I'm finally there.
This mom had it looked like a garlic press.
She put the pill in it crushed it.
She mixed it up in a little bit of fluid and then she had us okay think you all know what
I'm talking about.
Mine is like a screw.
Yeah that's what mine is.
It did not look like that.
It looked like and she like a lemon squeezer.
You guys can't see me but I'm squeezing my hand as if I'm pushing a garlic press like
a milk and a cow and then she puts it in the fluid and then she gets a syringe and she
just put it in his mouth.
Would he do that or is he cool just following the pill?
This particular pill is one that can't be crushed.
Really?
He's like an ER?
Yeah.
Oh I didn't know.
So yeah I guess I had to wrap that up nicely with a bronze medal medication giver because
I'm getting there but I have multiple gold medals in toenail clipping.
So for real you're just a gold medalist.
I'm a gold medalist.
I would say I'm a gold medalist at changing diapers.
Yeah I probably am too.
People are like you're already done.
Where have you been?
You know what I want?
Excuse me I want like a mini.
You remember when we used to wash cloth diapers or you've seen someone wash cloth diapers
and they have the little thing connects to the toilet.
It's like a shower sprayer and you can spray the diaper off before you wash it.
That's a real thing?
Yes what I want.
Is that a bathroom?
A toilet?
I don't know I don't know.
I just don't like a bidet.
It is interesting.
Oh wow.
It sits by the toilet.
Oh okay.
I don't know.
I'm just doing this justice.
Parents of children who use cloth diapers are going to come for me in the comments.
But you use cloth diapers.
I know but it does not very well.
I was using the bidet to wash them out.
I'm just kidding I didn't.
But I want like a power washer kind of a thing for parents of adult children to use.
Yeah.
Because I've heard some horror stories about some bowel movements and I'm wondering like
who could you use?
You could absolutely use something like that.
Yeah.
A lot of times that's why we utilize the shower.
Okay thank you because I am.
My kids use diapers but it's like a urinary incontinence thing so we don't have the full
spectrum of love and joy that you guys do.
Yeah it's fun.
So does that mean you guys could be Olympic swimmers too?
That's an event that I don't want to enter.
We try to not enter those events.
We try.
But usually those events take place when you're at the doctor's office so all the tools and
supports are at home where you can't access them.
It's always the case.
Your turn Sarah.
So I wasn't quite sure what to talk about.
So I was presented with an option to look into a clinical trial.
Okay.
For my child and I, my brain is struggling.
Am I using my son as a science experiment or should we just let things lie where they
lie?
Oh my god we don't get this deep and bring their own topic.
I know sorry.
This is intense.
It is.
Okay.
Tell me more about it.
There were older children yesterday that found this trial and part of me has always felt
like in this journey we're here for a reason.
Truman is for a reason.
To help people be better at their jobs, help the doctors really practice their gift.
Yeah he's a gift giver.
He is definitely good at that.
We are always the bottom 10% of you know whatever they say is not going to happen.
We're that 10% that does happen.
And so he's constantly challenging his providers and his doctors and his parents about how
well they are good at doing their job.
And so he's the ultimate litmus test.
He is and so I've always felt you know with all the different medications that we're trying
back and forth we sometimes just feel like a walking science experiment anyway.
Okay okay.
So I'm waffling on how to move forward on a clinical trial that could enhance his quality
of life.
I don't want to change him because Truman is who he is.
Right.
But if you're presented with an opportunity to elevate someone's quality of life.
How do you not right?
For them not for me but yeah.
So let me ask you this as a person who's really outside of this I think my first question
would be is this kind of like a pill?
Is it an injection?
Is it surgery?
Like how in the face is it?
It would be surgery and implantation and the kiddo is filled with metal already.
Oh right.
He's got surgery.
He has a rod from the T2 right above the shoulders and neck to his pelvis.
So it's his whole back basically.
So his entire back and he has a back luffin pump that gives a medication to his spinal
fluid and then a feeding tube.
So it's like are we really creating this bionic boy?
Or you know maybe philosophically thinking this is what we're put on the earth to do
for him.
Okay.
So let me ask you this.
Let's say you go through with it right and he does receive that he does become a part
of this clinical trial.
What are some side effects he could experience?
Yeah I need to do more research.
Well I guess another thing that I'm thinking is that your son is a non-speaking individual
so it's not like it could take away inability but it has the potential of giving inability
and this is something that has worked before for another person right?
Yeah.
So just one person?
They've only done it on one person?
But it's been improved through the FDA.
Stop really?
Mm-hmm.
Yeah.
So I know.
So what are the requirements?
Like who are they looking for?
They're looking for someone who is quadriplegic so even has no use of his all four limbs.
That's what that means and the inability to verbally speak words and get anything out
to anyone to understand what he needs and wants.
So what you're saying here is that he is the perfect candidate and it could benefit him
and it's at no cost to you?
I don't think so but you know where do I and where his guardian will be his legal guardian
so it's...
So let me ask a different question.
What Truman uses in AAC device?
Have you asked him how he felt about it?
That's a good question.
I think, not that I can remember but I do remember his brothers talking to him about
it while we were at the movie the other day and I didn't know enough about it to also
inform him of it so that will be a conversation for sure that we have together and with his
dad and you know things like that.
Yeah and the full team really.
I guess I am more like do we just leave it alone or leave Truman alone and move throughout
space and time the way it is or provide an opportunity to join a clinical trial and I
know that we've explored clinical trials here with our own kids in the office and had discussions
about it and I just never thought it would be possible for my family.
And so now I am faced with that mental grappling right?
So I know it was a heavier topic than the Olympics.
Sorry.
No we could offer some.
But it just presented itself over the last couple of days and I'm like this might be
a really good thing to talk about because we all want what's best for our kids and those
of us who have kids who are extremely challenging be it medically, physically, behaviorally,
we're always looking to make sure that they live the best life that they can.
When is there like a due date?
Like do you have to give someone like not sure?
Not sure.
All I know is the intake form is going to take about an hour.
Well and is it an interview or it's just the form?
It's just the patient registry form?
I mean I know we're not supposed to give advice here at Idaho Parents Unlimited but
I would do it.
Right?
I know I would do it.
Yeah.
I assume that if Truman consents which I feel like he would.
Yeah.
I mean he just gets so frustrated that people can't understand him.
I think this is a really good time to plug those person centered planning tools and you
can use some of the support star and you can use some of those trajectory tools to really
navigate this conversation with Truman and the other members of his team.
Yeah.
Well and your boys kind of found...
And his older brothers.
Yeah.
They have always been trying.
They hate all the meds that he has to take.
And that is honestly so sweet.
I know isn't that just the sweetest?
They're four and six years older than him and yeah they just heard about it and were
like mom have you tried... looked into this and I'm like no what is it?
So I know.
My youngest always...
Right?
He used to ask when the scientists were going to make the talking medicine for my son who
is not verbal.
Oh my god.
Right?
Yep.
And he's like you know science is doing amazing things and there's clinical trials and all
of these things and yeah he always wants to hear his brother talk.
You know even if it's to tell him to get away from him and stop playing with his toys.
We want to hear our kids talk.
I know and I think we don't want to change them right?
We don't want to change them and we're not trying to cure whatever it is that they have
because what our kids experience is not curable.
Right.
But it's that quality of life.
Enhancing that quality of life so that when we're not around.
Yeah.
That's a hard conversation to have.
It is.
Even if you're just having it with yourself.
Right.
And just in your own...
Yeah.
And it's a conversation that even amongst families can have.
Oh my god you're different.
Yeah.
Right?
And then you I guess need to carve a safe space out in your heart for when you do have
those conversations with families so that you have some tools to navigate if it's going
to go an opposite way.
Yeah.
And then I think that pushes us to be on our own isolated island anyway.
So right.
Oh my gosh.
Yeah.
It'll be within our family unit.
Yeah.
Our tight family unit.
Not to tell you that we worked this through.
Well that's how we've always approached all of our decisions is from that medical standpoint.
How can him as that sinner, right?
That person centered planning.
They're the sinner.
How can we guide all of our choices and honor what we feel would be best for him?
It's a hard line.
But I mean if he was a typical kid.
And that's always what we want to treat our children like.
That they're just typical kids.
He could do this without asking any of our consent.
Because he's an adult and he can do whatever he wants.
So if Truman consents to it, it doesn't matter what anybody else thinks.
Yeah, that's true.
You're right.
You're making the best decision.
Yeah.
Cool.
What about you?
Yeah.
What's your topic?
Oh God.
What about me?
Well it's not.
Time to regret.
It's not as deep as a clinical trial or as fun.
Oh God.
Thanks for making me go last.
Mine is about the conference that I recently went to.
Oh yeah.
So it was the Division of Early Childhood for the Council on Exceptional Children.
Okay, that's five times fast.
It meets annually and its audience is administrators, teachers, coaches, early education providers,
and parent training information centers.
So one thing that I thought was really interesting was how different every state is.
Yeah.
It was really unique.
I thought that the sessions were hands down the best ones that I had ever been to.
The keynote speaker was fantastic.
I made a lot of connections.
I talked to a lot of vendors.
So I feel like I have more resources that we could give to parents now as a result.
But it was the hardest thing to go by myself.
But she did it.
It was so hard.
I know.
Oh my God, you guys, I had to get an Uber by myself.
I'd never.
Welcome, Allison.
Welcome to the 20th century.
There's Ubers.
I'd never done any of that before.
And it was my Uber driver's birthday.
Oh, really?
Yeah.
Uh-huh.
And he even showed me proof because he was like, a lot of people don't believe me because
they think I just want a bigger tip or more stars or whatever.
So he's like, no, really, it's really my birthday.
And then has a license for every day.
Right.
And he, it was really funny.
He's very serious.
He's really polite.
He said, you know, can I take a call?
Oh, that's nice.
I said, sure, why not?
Answer the phone.
And he answers the phone and you could.
Hands free.
Everyone was very safe.
I don't know what the laws are in New Orleans regarding driving while on the phone, but
it was very safe.
And I think it's so funny how no matter what language someone is speaking, you can recognize
happy birthday.
It was so sweet.
And it was just cool.
It was in.
He ended up telling me that he spoke his native language was Chinese.
So someone was calling him to wish him happy birthday and they say it in Chinese.
And I was in, he was like, let me take it off speakerphone.
I was like, no, leave it.
Listen, please.
That's it was.
It was so sweet.
And then never heard it.
You know, the singing kind of panders out.
And then you start hearing all of these little voices.
Happy birthday.
I was like this huge group and they were, I wanted to cry.
You could tell that they were just like little voices.
And he was like, and he looked up in the, in the rear view mirror and he was like nieces,
nephews.
And he was, oh my, it was so sweet.
And I was like, what are you doing working on your birthday?
Really?
Something about Uber gives you double diamonds or something.
You work on your, I'm like, encourage.
That's what I was thinking.
And it brings me back to the whole thing about, and I know you feel this Melissa very strongly
in your bones working on Thanksgiving.
No, yes.
I feel that for those of you who don't know, Melissa had a life in retail before I pull
and I had a life of a much shorter than Melissa in retail.
So I'm old.
No, because I just didn't spend that much time in that world, but you worked a lot of
Thanksgiving and I refuse.
I will never work another that that was a condition of my employment at I pull.
I was like, Hey, I'm never working Thanksgiving or Black Friday.
And the answer was like, no, no, neither am I.
Yeah.
She's like, it's a federal holiday.
You don't have to.
I would volunteer.
I would volunteer because you've gotten double time.
Yeah.
And I was like, I'm all about that.
Right.
But I was salaried for most points so that I was told to be here.
We had to.
Yeah.
In all fairness, my kids were really, really little and they didn't care about Thanksgiving
yet.
No.
They were just happy together and they thought that that was cool.
But it wasn't like you were missing out on Christmas.
No, and I didn't miss out.
I still participated in our dinner.
It just was always, yeah, it was always, I got to hurry through this or, you know, I
wasn't in an enjoyable or Melissa's family doesn't stay to do the dishes because she
has to get ready to go for the next shift.
Right.
I noticed that though, I know I'm sorry.
I know this wasn't my topic, but I did notice that parents are like, their family members
are like, you chose this.
Yeah.
You just take the day off.
Yeah, no.
And I think you really don't understand.
No, and I don't think anyone has the right to say, right.
Target never sleeps.
You chose this.
No, it's something, hey, sweet, I have to work.
And that's a stipulation, right?
Like I don't know.
I know.
I hate that excuse.
It was really, it was, it came full circle when my mom decided to work retail for a little
bit and then she was like, oh my word, it's so hard.
I'm like, yeah.
Thank you.
And that's what I was telling you.
I think mine is yours.
You're welcome.
So I guess.
Now my daughter works retail too, so it's just full circle and she'll have to have a
job that everyone needs to, I think, I experienced that.
And it's a retail service.
Oh my gosh.
It makes you a more compassionate human.
It really does.
And you learn how to speak to people nicely or appreciative.
Appreciative.
Yep.
I love, I love how Melissa will shut the door so no one can hear her when she has to use
her customer service.
For real.
I hate that.
I'm for real.
We all have those.
Oh, absolutely.
But I remember it was so painful for you when you were training me and you were like, don't
look at me.
It's just so funny and I will never not remember it.
Anyway, I'm sorry.
I say all of that to say, you know, the DEC conference, the Division of Early Childhood
Conference, it's every year.
It's not always in New Orleans, even though that was super fun and cool.
Parents can go.
Really?
Yeah.
If you, there's a family sessions, a family track.
If you have the ability and the propensity and the want and the will and the drive and
I don't know how many other synonyms I can name, you should go.
It was really great.
I hope, I hope that we can, more of us can go next year.
You know, I think the conference that you and I went to was, I think, part of the council
for exceptional children.
They put on the-
It was, I mean, it was for older and dispute resolution, but it did have a component or
a collaboration with the council for exceptional children and they got it going on.
They have so much support.
I mean, they, they networked, right?
OSEP was there, David Cantrell, Kristi Kavall, like everybody was there.
Everything that we would see in our OSEP spaces and I don't want listeners to think that it
was just iPoll that went from Idaho.
Oh no.
There were, there was, and I obviously, I won't say her name, but there was a, an employee
for the Shoshone School District who was there.
Really?
Yes.
Local to Idaho communities were sending people to Louisiana to gain the knowledge, to bring
it back to Idaho.
And there were a lot of, you know, you'll see people that say, you know, like I follow
the Department of Early Childhood practices.
Like they list the practices that they want to see in our communities and we help support
them, right?
Yeah.
I think that's great.
New literature on behavior, new literature on disproportionality, suspensions, whatever
the case may be.
Family engagement.
Family, oh, family engagement was a huge one.
I feel like people, people don't understand how states can be so different though, because
there was one session where I was talking about family engagement and they were just
like, they, they looked at me like I had 75 heads when I was trying to talk about what
Idaho does and they were just like, why?
And I was like, that's a great question, but this is where we are.
So instead of asking me why, maybe give me some solutions.
Yeah.
Because you can't look me in my face and tell me that your state was never in this
position because you were and how did you not be anymore?
Yep.
What were our steps to pull us from where we currently sit to a more robust family engagement?
Yeah.
If I closed my eyes and I dreamed about like what I would want for Idaho, it would be for
everyone to just have compassion and want to be collaborative and want to play in the
sandbox together.
And remember that it's not about he said, she said, it's not about the parent.
It's not about the teacher.
It's about the child who was getting support.
It's not, I had a worse day than you or I'm working harder than you or whatever the case
may be.
It's about the child.
It's a good way to end the podcast.
I think so.
Thank you.
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 I pull 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.