According to the Centers for Disease Control and Prevention, In 2020, there were over 140,000 children born with some kind of disability.

We're going to talk about raising children with special needs.

Coming up next on Inspire.

- [Narrator] Inspire, is sponsored by Kansas Furniture Mart, using furniture to inspire conversation.

And by the Blanche Bryden Foundation.

(upbeat music) Hello and welcome to Inspire.

I'm Betty Lou Pardue, along with Leslie Fleuranges and Amber Dickinson.

And we're so glad you are there.

We're going to learn about raising children with special needs.

- The birth of a child should be one of the happiest events of a woman's life.

But what do you do when you learn that your child has a disability?

Today we're going to talk to a couple of experts who can give us some advice on where to turn for help and information.

Sandy Crawford is the Vice President of Pediatric Services at the Capper Foundation here in Topeka.

And Linda Burgen, is a Board Certified Behavioral Analyst at the Capper Foundation.

- We are so pleased to welcome Penny Kinder, a Topeka mother who raised a daughter with special needs as well as the daughter she raised Lacey Kinder.

Ladies, thank you so much for joining us today on Inspire.

It's wonderful to see you all.

So I always have the question of let's roll back and define what it is that we're talking about.

And so there was a little bit of a mention of disability.

But how would you define a child with special needs?

What does that mean when we say special needs?

- Well, special needs refers to a person who requires assistance to do any activities.

They may have limited abilities that affect their physical, mental, developmental, or intellectual skills.

In the school setting, special needs refer to educational services that help them to be able to learn in the school setting.

It may also include special services, such as speech, occupational or physical therapy.

- I'd like to thank you for being who you are and where you are at the Capper Foundation.

I had a grand nephew who is now deceased, but you helped him so much while he was alive.

He was here for five years and a wonderful young man.

When you say special needs, it's not just that child, it's the entire family.

Will you expand on that please?

- Well, family's obviously are the ones taking care of their child.

So, the parents can be working with the other siblings in the family, and then they have a child with special needs who's gonna require maybe extra doctor visits, special equipment, special formula, therapy services, things like that.

So it really can affect the dynamics in a family when you have a child with special needs.

- So obviously there's been a lot of change in the way we work with individuals with special needs over the last 30 or 40 years.

So could you walk us through some of the changes in the progressions that we've seen when working with people who have special needs?

- There is a lot of changes in the last 30 to 40 years.

There are definitely more services and community awareness and things like inclusion in clubs, in schools, in community altogether.

And there's definitely increased information out there for families and that has improved and multiplied immensely with the use of computers and things like that.

And there are so many more opportunities for parents to make choices.

And to choose different services for their children.

- I happen to go to Dialogue Coffee here in Topeka.

I don't know how many of you have, but what the owner does is she hires individuals with special needs.

Is that something that you guys work with as well in terms of helping these children progress from the beginnings of having special needs that need to be worked on and take them over time to be full functioning members of our society?

- Yes, we start with children as infants and work the services are often lifelong.

And we build skills and trainings for transitions through life at different times, including jobs, and schooling, and just joining in community overall.

- Penny and Lacey kinder, we are thrilled to have you.

You can tell this from a personal perspective.

Penny, will you tell us your story?

- Sure.

When Lacey was four months old, we went to her pediatrician for her normal four months checkup.

And prior to that, I had noticed that Lacey held her hand like this, with the thumb... Get it right.

With the thumb tucked in under the rest of her finger.

And so that was a concern of mine.

It wasn't a big concern, but because my pediatrician had seen some child a year earlier, he was very aware that this could be a thing that we need to look into.

So he sent us for Lacey to be evaluated at the St. Francis PT.

Now this is 34 years ago.

So we went to their facility, they looked at her and then recommended that she had a CAT scan.

And so once that CAT scan was done, it was confirmed that Lacey had a right hemispheric 4 inch cephalic cyst, which basically means she had an underdeveloped part of her brain on the right side, which would cause a left side weakness.

And so our pediatrician because of his experience with the child the year prior, he sent us to the Capper Foundation when Lacey was a year old.

- That's fantastic.

So upon hearing this information, what was your reaction to that?

- Oh, well, I remember being devastated.

and I give... You've got to give yourself that moment to be disappointed.

Something that you didn't expect just fell into your lap and is going to be a lifelong reality.

But then you become that mama bear and you're going to do whatever it takes that will help your child succeed.

And we just took it by the horns and went for it.

We went to the Capper Foundation twice weekly.

We had physical therapy, occupational therapy, and we did that until she went into kindergarten.

- So Lacey, can you tell us a little bit about how it's been going through the Capper Foundation and having experiences there?

- So, yeah, when I was at Capper Foundation as a child, I had really close connections with my PT and OT who put me through my phases definitely to make me the best that I could be.

They taught me how to walk.

I didn't end up walking until I was just shy or just over two years old, excuse me.

And they got me ready to start school by the time I was five.

So the team is wonderful.

- And you are wonderful and beautiful.

And we are gonna speak more with Lacey in just moments.

Stay right there.

(upbeat music) - Hi, I'm Janet Thompson-Jackson.

And I'm so excited to be a part of Inspire today.

Are you one of those people who feels like, I just don't have time to work out?

I want to, I would, if I could, but I just don't have the time.

Well, today, I am going to show you some yoga moves and just some general movement that you can do while you're sitting in your chair.

You can do this in a small space.

If you don't have access to a yoga studio, or if you just don't feel comfortable going to a studio.

Let's sit down and get started.

I wanna talk about something briefly that's really important.

I don't know if you know this, but, a lot of people who have to go into assisted living or need help as they get older, it's not necessarily because they have an illness that is taking them to that place, it's because they have problems getting out of a chair.

They simply cannot get up and down without help.

There's something that we can do as we age.

Starting at a young age, we can start this at any age.

Something that we can do to help avoid that.

I want you to sit on the edge of your chair, and this is gonna be really important to engage that core.

So I want you to imagine that string, pull that string back from your belly button to your back.

So I've engaged my core, and I'm simply going to stand up, but not all the way.

And sit back down.

What I'm doing is I'm engaging my core and I'm using these muscles that we use to get out of a chair.

If you have to help yourself a little bit at first by pushing yourself up like this, again, you don't wanna stand all the way up.

Because you'll lose your core engagement.

And then back down, see if you can work up to doing it without using hands.

If you don't do anything else, this is really one of the most important exercises.

Because it really can help you stay independent.

So up, and then back down.

And before you go down, engage that core.

Again, pull that string, and now back down.

And up, you can do this every time you get up out of a chair.

You can decide I'm going to get up by engaging my core.

Stay just for a moment, and then go on your way.

If you want to do these without a chair, or you might graduate to the point where you feel very comfortable doing it without a chair, then an important thing is to... As you do these, we call these squats.

You wanna make sure that you are not... A lot of people do a squat and they do this.

They're bending and you can see that my lower legs are moving.

You really want that part of your body to stay stable.

And you want to as though you're sitting in a chair, So what I'm doing is, below my knee down, that's not moving.

What's moving is my bottom going back.

Going back.

And I'm sitting in that chair.

So, as you gain core strength and gain muscles in your legs, you can go lower and lower, but do it at your own pace.

I'm Janet Thompson-Jackson, and I hope I've inspired you to replenish and restore.

(upbeat music) - We're back with our guest Sandy Crawford and Linda Bergen of the Capper Foundation, along with penny and Lacey Kinder.

So Lacey, if you can please walk us through your academic career and what you're doing now for employment.

- Sure.

Like we stated previously, I went through elementary junior high in high school here in Topeka.

And I went on to go to college and receive my bachelor of arts degree from Washburn University.

And I received it in mass media.

So that's more along the lines of marketing, and advertising, and public relations.

And so I have been gainfully employed with Capper Foundation for the past 12 and a half years.

- That's amazing, it's incredible.

- That is.

A fellow Ichabod, yay!

(laughing) Come over and help us here at KTWU any time you want, we love you.

- So Lacey, you were telling us about your transition through all of your schooling and the fact that you have been with Capper all of these years and now working for them.

Tell us a little bit about what it's like to be at Capper.

What happens when you're there?

And do you also recruit people to come to Capper so that they can benefit from the wonderful services they offer?

- Sure, yes.

I have always been an advocate for the families that we serve as well as an advocate for what we do.

So if I encounter families out in the community and especially if I'm wearing my name badge or a branded shirt, a lot of people will come up to me and ask me, what is Capper Foundation?

And, I'll explain our programs and services for children as well as adult.

And, a lot of times they'll say, well, I didn't know what Capper Foundation did, but I know somebody who could benefit from your services.

So, raising awareness and being able to share my story as a part of what I do here has been phenomenal.

- You're a wonderful ambassador.

As I mentioned earlier, my grand nephew had special needs.

At his school, he was up in the Royal Valley area.

And his whole class rallied around him.

Did you have a similar situation or feeling?

- Growing up in the mid to late eighties and into the early to mid nineties, things weren't as inclusive as they are now.

Unfortunately, I did have a great group of teachers and friends, but I did encounter unfortunately some teachers, and administrators, and some students who weren't as kind and didn't understand what a disability is.

And so unfortunately I had some incidents of bullying and some tough situations with teachers as well.

- I'm so sorry that happened.

You're a very strong person.

So I'm so sorry that that happened.

But glad that it's progressed and now things are better.

- Yes, absolutely.

As time has passed, our community has grown to be more inclusive.

And what really inspires me is, I'm friends with a lot of families that we serve here at Capper Foundation in recent years.

And I'll see posts on social media of their son or daughter was made a part of a sports team, whether it was to be on the team or to be a manager.

And just how other players, and teachers, and students surround them with love and support, is definitely inspirational and definitely somewhat different from what I experienced as a child.

So, I'm beyond doubt that things have progressed over the years.

- I think that's amazing.

And I think that sometimes we're quick to judge things like social media.

But I think that there are some aspects of social media that do help with certain types of inclusivity.

And I certainly think that you can see this with the examples that you mentioned.

But overall, I'm curious to find out about when and this can be for the group.

Sandy, Linda, whoever would like to join in.

When parents receive information that their child has special needs, What are their reactions to that?

- Well, my experience, what I didn't know, I was going to have a child that had special needs, but, it's a shock.

It's not what you expected.

But you're going to do whatever it takes.

And so you just... Now, like you say, nowadays people are much more aware.

They have the facilities and the services are a lot easier to get into contact with.

- So ladies, Penny told us early on that she went to her pediatrician.

She noticed something, he sent her for testing and then eventually to Capper.

But for people who not don't necessarily know what to do, if they have a child with special needs, how do they get diagnosed for this?

And what do they do?

Can you help our audience understand what the progression should really be around that?

- So, mainly I would ask them, first of all, talk to your doctor.

Your doctor's gonna be able to recommend and refer their child to additional services like Capper Foundation or school services, if the child is old enough to be going to school.

They may send you to some specialists to get some additional testing or evaluations then to determine what level of involvement your child may have with the diagnosis.

School teachers and therapists cannot diagnose.

So the diagnosis has to come from a doctor or a team of medical profess professionals who can do that.

There are home based programs like Tiny-K in Kansas, does birth to three preschool.

And on up in the school systems, will provide school services.

And then outpatient clinics such as Capper, can provide services for the child that are a little bit more medically based than what they can provide in school.

And even some services up to age 21.

- Are any of these at no cost or low cost, because this sounds extremely expensive.

And that's an additional burden on a family.

- Tiny-K services are funded by the state and the federal government.

So there are no charges for the families to participate in those.

And we all know that school services, if you're at a public school, there are no fees for the services that are provided there.

There are additional, like Capper has additional scholarship funds that we can use to help families pay for the services that they need.

A lot of children with special needs are eligible for Medicaid, so they can get Medicaid funding which will also cover medical services such as therapies for their child.

- And so Sandy, I'm wondering about...

I think Lacey brings up some really good points.

It's nice to know that we've become more of an inclusive society in some ways, but what do you folks in these situations where there is not that kindness?

Is there some type of psychological services that you offer at Capper to help children and young people through the difficulties of being with people who are not quite as kind?

- We don't have have a psychologist on staff at Capper Foundation, but over the years, we've had different types of group activities.

Linda's program works a lot with how families and the child can work with their classmates, or their siblings, or friends, and learn to be more accepting.

I think parents really need to talk to their child's doctor, and figure out what are your concerns.

What's the diagnosis?

What does that mean?

Where can I take my child to get the supports that they need?

Whether it's at school or at a clinic like Capper Foundation.

- I do work with a lot of children, and families, and parents together and parents do grieve.

And I am a big believer in listening, number one, to start with families.

And then to support them and talk about the positives.

And I do think that's a shift that we've seen over the years from the child and what they cannot do, to the child and what they can do.

And that's a lot of what I help support families with, and meeting them and building that confidence in not just settling for the diagnosis, but what can they accomplish and how much can they move forward?

And what can they become and what strengths do they have.

- In the remaining seconds, how good do you feel about how wonderful Lacey is?

- I am thrilled with Lacey.

Lacey actually volunteered in one of my programs when she was in high school, I believe.

And so I have seen Lacy mature and become quite an outstanding employee here at Cappers of supporting families.

- Well, ladies, thank you so much for joining us today on Inspire.

It was really wonderful to have you today.

And when we come back, we're gonna continue our discussion on raising children with special needs.

Stay right there.

(upbeat music) - Ladies, this has been so informative and inspiring.

And I tell you, I've just learned so much.

What did you take away from it?

- It makes me think a lot about the issue of equality.

And that people with special needs or disabilities are not being treated equally.

When we look at things like buildings that are not accessible for people who may need the aid of something like a wheelchair.

Or when we look at things like just this general idea that maybe somehow a special need or disability is a burden on someone's life.

And I don't think that this is how people with special needs are viewing themself.

So it's really contingent upon us to do the work and to learn and to eradicate that mindset.

- I guess I was shocked that there was not a service for psychological issues.

I've gotta think that, that would be a real help to anyone that has special needs that has been bullied.

That everywhere is not acceptable, let's just face it.

So, to me, there's gotta be a way to get services for folks who are learning how to deal with this, recognizing that they're different in some way from peers and how to deal with that going forward for life.

I think that's important.

So, I'm hoping that's something that they might be advocating for.

And maybe that is something that is helped under the idea law that they have.

- I love the idea of making everyone feel included.

Everyone wants to be treated.

At least that's what I always hear.

They don't wanna be treated any differently, and so I loved it when they were saying Linda, was saying, let's treat, 'em all.

Like include 'em in your church groups, your scouting groups, whatever, and make them feel like there's no difference.

And if there's, maybe they need help with mobility or whatever, you can be the advocate for that person.

- Right.

I've read stories where people talk about, if a person with disabilities is with a person that does not have a disability, people tend to talk to that person as opposed to the person with disabilities.

- Right.

- And that's another thing that we have to remember not to do.

They can speak for themselves.

- Sure.

- Right.

- They can take care of themselves in most cases.

And so, that's another way of making sure that we are being an inclusive society.

Is remembering to speak to the person themselves.

And Lacey is a fabulous- - Oh my gosh wonderful.

- Ambassador for just that.

So it was wonderful that we were able to include her in the program as well, because she gives us a sense of what does it look like as we mature into adulthood and the jobs that we can have and the things that we can do.

So I thought that was beautiful.

- Especially, I do think in our society we tend to have this mindset that we are reserving these sort of lower tiered jobs for people with special needs, which is just absurd.

Because you've got people that once they have their program that addresses their need or disability, then they are on a trajectory to do whatever they want.

- Exactly.

- Well, that's all the time that we have for today.

But if you'd like to watch this program again, or any KTWU Production, go to watch.ktwu.org.

- And if you are so inspired to learn more about our guests and find out what is coming up on future shows, or get access to additional content, be sure to visit our website at www.ktwu.org/inspire.

- Inspiring women, inspiring families, inspiring those with special needs and inspiring you.

On KTWU, we thank you for watching, goodnight.

(upbeat music) - [Narrator] Inspire, is sponsored by Kansas Furniture Mart, using furniture to inspire conversation.

And by the Blanche Bryden Foundation.