[ Music ]
>> Okay. So, tell us about a time when you've seen your child be more independent
in a healthcare setting?
>> From my perspective, I think every kid is, every child is different.
So, I think you listen to the cues of the child.
You know, the three that I had, my eldest one was kind of neutral
and he handles his appointments, he's 22 now, just fine.
And the middle one, 21, I mean, for the longest time I had to go with him
because I could tell he just wanted support, you know, while he was there.
I could feel that.
And my daughter's totally different.
She has a chronic illness.
And we came to, it's Crohn's, and she was diagnosed when she was 9.
And when she was 12, 13, we came to a point where we had to make some decisions in regard
to the next phase of her healthcare.
There were two paths that we could go, either surgery or tube feedings to try
to gain weight and start her growth process.
She actually made the decision to go with surgery and it was an ileostomy.
It's, you know, a bag.
So, but her rationale was one might solve my growth issue
but won't do anything for my disease.
The other one will probably help my disease and in turn help my growth issue.
It's part of evolving into an adult.
And that interaction with the doctor and feeling comfortable, too.
It's all part of, you know, it's going to improve their healthcare.
>> You're absolutely right about that.
Because--
>> The more you talk to the doctor, the better care you're going to receive.
>> Because what we do as parents I think a lot of times as a parent in all different areas
that take care of the academic needs, the financial needs.
We really don't stress that healthcare thing.
And that's just as important to me as anything else.
>> I agree.
And unfortunately I didn't realize that until, you know, I was dealing with my daughter,
how important that is and seeing how important that is.
>> Has anybody else had a child who's interacted more with the healthcare system
and had to show some independence?
>> I have a child who has peanut and tree nut allergies and asthma.
And he is, he has been exposed and he's had an anaphylactic reaction.
So, letting go is very difficult, letting him go to certain situations.
He has done an absolutely stellar job this year in advocating for himself.
Where in fifth and sixth grade, he didn't want people to know.
Prior to that, he would tell people but he was kind of quiet about it.
He didn't want to feel different.
And this year someone was eating a cashew butter sandwich and he just looked
across the room and said you cannot eat that.
And the child said yes I can.
And he said no, you can't.
It will, I can die.
You can't eat that sort of thing.
So, he did this great job of expressing himself.
A lot of times people think, you know, kids are being fussy or they don't want
to eat something instead of understanding that anaphylaxis can result in death.
And just because you have an EpiPen doesn't mean that you will be okay.
And so we did a presentation with the staff.
They in turn shared videos with the class and he's been able
to advocate and speak up for himself.
And he also was approached by another parent to speak with the lunch staff.
And he said, I'm not, he said, I really didn't want to do it
because I wanted to hang out with my friends.
But I thought that I should.
But he went and he spoke as like the spokesperson on it and I was very impressed
about things that make him feel comfortable and what he doesn't feel comfortable with.
I was very proud of him for that.
He deals a lot with the healthcare system and has to speak for himself
because we can't speak for what he's feeling.
>> One of the things a young adult has to learn is to parse any kind of information that he gets
from different avenues and how to reconcile any conflicts that he hears.
Because we all wish that all advice was cut and dry and right and wrong
and as social media has given rise to, we know that having a coherent narrative
through everything that we hear is tougher than ever.
Because there are many, many, many more sources of information
and it's a whole other issue about, you know, I don't want my son to grow
up Googling his symptoms on WebMTV, WebMD rather.
WebMTV would be something, too.
It might actually get more hits.
And I think that that's a really important dialog to have with kids too,
to talk about how to develop a discerning sense of what to make
of all the information that's at his disposal.
To recognize that if you keep an open mind and you recognize the power
of all the research you have and all the resources you have,
you can make the best choices.
>> So, starting at age 12, the recommendation is that the doctor spends time alone
with the child at least once a year.
And part of that is because starting at age 12, you can access some services confidentially
without your parents' knowledge or consent.
But most of it really at 12, 13, 14 is really to let the child have some chance to show,
take ownership over their health and share their information,
share their view of what's happening with them.
So, has anybody had that time where the doctor asks you to step out
and how did that feel for the first time?
>> I had an experience that almost set me back two or three years where my son,
my oldest son, he's into counseling.
At 14. In terms of getting the medical records, it's about they don't have
to give parental consent or something.
And I was livid.
You know, and I said, because you know, we're so used to being there to protect and guide them.
And I said, Well, I'm paying for this.
But like, you have to learn as a parent how to say okay, yeah, because you know,
we're trying to teach them to become more independent.
And then we don't show that, you know.
That's setting them back as well.
>> My older child really struggled from being able to see some doctors, his pediatrician,
to having to switch over to non-pediatric care.
He felt that talking more about his illness with him,
just specific so that he could understand it, would be helpful.
He often didn't like to talk about it.
Though I did have to remind him.
And he said I needed help with what I should say when I call.
And he still will call home and say what do I say, who do I call.
And so I talk him through it.
And he's now found his own doctors.
He knows, and he will call.
But that was something he really struggled with.
And he did say I can go but I would like you to go with me.
I feel better.
It's just what we always did.
And I was like, so.
I have a hard time letting go.
But he's doing it.
But I think what you're both telling me with your children being able to advocate
and say those things is fantastic.
>> I think the biggest piece is so that they can ask questions
for themselves and not listen to friends.
When my daughter was younger, I really encouraged it
because I wanted to be sure that she would.
If you didn't feel comfortable asking me, just, bottom line stuff,
just ask the bottom line question so you can get a true answer, a medical answer.
And build that relationship so that,
because I knew at some point they would be asking me to leave the room.
And they would be having these one-on-one conversations
but I wanted her to feel comfortable in that.
Because my daughter, too, was diagnosed with a chronic illness when she was really young.
And, you know, I managed that until she got to grade level but at that point,
she would read about, you know, her illness.
She would ask me questions.
I'm like, that's a really good question.
Let's write that down so when we go to the doctor.
And so she's learned to do those type of things.
She was even able to identify that a medication that she was on,
and this was she was in sixth grade.
She had a cold and her doctor said to her Oh, you know, just take X,
Y and Z. And so my daughter immediately looked it up.
Because one big thing I always told her was make sure
that there's no interaction between medications.
And she's like, Oh no, you know, that's going to be an issue.
Look it up.
And sure enough, her doctor was like, Oh.
You know, and so, you know, just owning that, managing it.
But they have this, like, really strong and great relationship now.
And so it's bridging away from that.
That's the piece that we're working through now.
But I think it's really important for them to feel comfortable with the medical provider.
But also know if you have a medical provider and they're not fitting the bill,
you can recognize this and you can recognize it too.
It's like, oh, no, this isn't, you know, what it should be.
[ Music ]