More Than a Diagnosis: BJ’s Story, Told with Love and Advocacy

Kim Lanclos Smith shares her experience as the mother and full-time caregiver of her son BJ, a traumatic brain injury (TBI) survivor and artist. They discuss how art has become a tool for healing and expression in their lives.

Transcript

Thank you, everyone, for tuning in for this episode of This Ability Podcast.

I'm your host, Mary Baudoin, and today we are very excited to welcome Kim Lawncloth-Smith and her son, BJ.

I want to thank you both so much for being here today.

We appreciate the invitation.

I am BJ's mom.

I've been a disability advocate for about 20 years.

I have a long history in the caregiving industry, so I've done a lot of private duty care through

waivers.

I am BJ's full-time caregiver, and I have been for over 10 years.

So BJ had an accident, is that correct?

That, okay.

Tell me about life before the accident.

Both of you can answer if you'd like.

Well, BJ, life before the accident was his dad and I had been divorced three years when

the accident occurred, and he was about to go into high school, and he loved sports.

He loved playing football, being in the gym and working out.

He was an excellent athlete.

He was in great shape.

His dream was to play for the NFL.

We had a family that, back in the 60s, actually, that used to play for the NFL, and he and BJ

favor each other a lot.

And so we had some family out there that lived in Houston, and they invited him to go and

interview with some high schools that were interested in putting their athletes through

rigorous training.

We agreed for him to go, and he was there about two weeks.

And the day of the football physical, he and his cousin were taking turns riding a four-wheeler

in the neighborhood on a paved road, which is not supposed to be ridden on a paved road.

It's an off-road vehicle.

And a dog came out.

A dog ran in front of him, and he swerved to avoid it.

And a police investigation determined he was going about 60 miles an hour.

So it was a racing four-wheeler that had been modified to go highway speeds.

And we didn't know that.

They didn't know that either.

So at the point of impact, he was thrown 25 feet.

He had no helmet.

So they swerved to miss the dog?

Yeah, he swerved.

Hitting a tree or?

He ended up just tumbling over it.

Tumbling.

Yeah, 25 feet, he tumbled.

And he had no helmet.

He had a catastrophic brain injury, and he had broken collarbone, lacerated liver, punctured

lungs, and he had some really, really awful road burn on his arms, his upper back.

And it was terrible.

Took the skin right off.

I was in New York at the time.

And when I got the call, it was my ex-sister-in-law, and she said,

BG's been in an accident, and I'm here at the hospital.

They were riding the four-wheel, and I'm thinking, well, maybe he just broke his arm or something.

She said, no, he's in brain surgery right now.

And they're giving him 10% chance of survival.

So I, yeah.

So when I got there, they were like, you know, he was in neuro ICU.

He had already been through one brain surgery.

And they were like, look, he's probably not going to make it.

You know, but when y'all go in to visit, like, neuro ICU is very strict.

You can only go in and visit for, like, 10 minutes so many times a day.

They were like, it's just not good at all.

He wasn't responding to anything at all.

You know, he was in a coma for about three weeks.

One of the strange things that happened was whenever I came into the room, my mom, before I got there, my mom had been telling him that I was on my way.

And so when I came into the room and I leaned over him to tell him I was there, I remember his head was this way.

And he really, really, really was trying real hard.

And he turned his head toward my voice.

And I remember my sister-in-law running out of the room because she goes, the doctor needs to know, you know, he's responding.

It was a very precarious situation, just waiting.

It's a waiting game.

When you have a loved one in a coma, there's nothing that you can do but wait and wait.

He ended up, he had massive bleeding on the brain.

So they removed half of his skull on the left side to allow for the swelling.

And his face was so battered.

His left eye was this big.

It was unbelievable.

He had what's called an ICP monitor inside of his brain.

It's a monitor that they insert into the brain to watch for brain swelling because people can die from swelling of the brain.

He ended up having four brain surgeries in total.

Wow.

A few months' time?

Within about a couple months, he had that many brain surgeries.

You know, we didn't know.

I remember being told by a nurse one time.

She came in and she said, I want you to know that if ever you're able to take your son home, he will be in a vegetative state for the rest of his life.

I was so devastated.

One of the things that I find interesting, especially, it's been 20 years since his injury.

I remember every time he had a brain surgery, you know, we would always ask the doctor, what's the next thing?

You know, what can we expect?

And all he would say every time is, I've done everything I can.

And the rest is up to him.

And I thought that was the craziest answer.

I'm like, my son almost died.

How could he be deciding anything?

Not in his current condition.

But what I learned is, is that people in minimally conscious states, they can hear and they actually can decide.

It's a very interesting concept.

But that doctor knew that those patients that have been sometimes in near fatal accidents, they appear to be not present to the world because there is unconsciousness.

But they actually do.

They do have awareness.

Their spirit has awareness to decide.

And so I remember whenever he came out of the coma, I just thought he was going to open his eyes and, you know, he's going to be awake.

And that's not what happens.

Awakening from a coma is a very gradual thing.

You know, like sometimes he used to lift one of his legs up and down constantly.

And I remember one of the doctors saying, he's ready to get out of this bed is what it is.

Awakening from the coma is, you might see a flutter of an eye just a little bit and then they close again, you know.

And over time.

Nothing like what we see in the movies or television.

No, no, no.

Nothing at all.

No one awakens from a coma like that.

That.

You know, like, oh, they're wide awake.

It's not like that.

It's very, very gradual.

So I remember when I used to go in and visit him and when he was in the coma and I would talk to him and pray with him at his bedside.

And he would squeeze my hand sometimes.

But he cried and he cried while he was in the coma.

Just the biggest tears I had ever seen.

Yeah.

And I was like, that is so strange.

He's crying and crying.

So anyway, when he woke up from the coma, the first thing he said is that he had died and that he had crossed over.

And that little by little, he didn't tell the whole story all at once.

And little by little, it came out that he had crossed over and that heaven is full of love.

And he had a lot, a lot to say.

Do you remember being in the hospital?

Oh, yeah.

I remember they had this guy next to me and he wouldn't turn the radio down.

Crazy.

Yeah, but that was annoying.

Oh, yeah.

You said that BJ's recovery has been described as miraculous.

Absolutely.

What were some of the biggest challenges that you both faced after his coma, his waking up?

That's a great question.

I do recall that, first of all, he had to relearn how to walk and talk and feed and dress himself.

One of the things we found out is that he had a stroke during one of the surgeries and he lost over 60% of his vision.

BJ has mainly, a lot of times, a brain injury is an invisible disability because he seems to be so great.

People would never suspect.

You want to take your hat off and show her your question mark?

Yeah.

Yeah, you can see it.

And the day before yesterday, I bought some colonists called Guess and I had a question.

So he's got a permanent question mark on his head.

And that scar is 20-something years old.

It is 20.

He has another one on this side, but you really can't see it too good.

So that's where they opened up his skull.

Yeah, on both sides.

So you talk about the challenges.

I mean, I watched him really struggle to walk and, you know, talking, coming out of a coma.

He had a trach and it's very difficult after coming out of a brain injury.

A lot of times he looked petrified.

I was going to say, did he remember words?

No.

You know how to talk?

Sometimes he didn't know what to say.

No.

It was very gradual, all that coming around.

I remember we'd come in the room and he would look at us and he was petrified.

And the doctor said, it's probably because he doesn't remember who you are.

So all these people looked like strangers to him.

I mean, gradually that improved.

He, BJ in the hospital, he was what's called an eloper.

You know, he was a runner.

So he could get up and go to the bathroom.

And at Memorial Hermann Hospital, where he was in Houston, the hallways are so long.

You know, they just go on forever.

I could tell he would get a look on his face and he was getting ready to run.

And if he could get out that door.

He was training for football.

Exactly.

What did you expect, Mom?

Exactly.

Crazy me, right?

Yeah.

And so they'd have to, you know, you'd hear on the end of the call on security, we've got

a new loper.

And they'd come and they'd bring the leathers on and they'd strap him down to the bed and

stuff.

So he just didn't have a lot of understanding at all about his injury and what had happened.

Physically, he was able to kind of catch up.

Oh, yeah.

Because I'm presuming he was in good shape at that point.

He was in excellent shape.

Right.

He was in excellent shape.

It's just mentally, nothing.

Cognitively, it was gone.

It was gone.

But I remember when he was in neuro ICU, there was the doctor that was the, he was the director

of the ER when BJ was brought in.

He would come and visit a lot to check on him.

And he said, sometimes we send other doctors or nurses in here to check on patients.

And he said, they couldn't find him.

They'd come back and say, there's a 15-year-old where?

We can't find him.

And he goes, I remember one nurse saying, yeah, that's, he looked like an adult.

Sure.

He said, he's one of them Louisiana corn fed boys.

That's why.

He was huge, huge.

I remember the director of the ER coming in one time and he goes, I don't know how to

tell you this, but he said, we don't understand why he's holding on.

That's how catastrophic his injury was.

Oh, my God.

They were very, very blunt.

They were very honest.

At some point, you guys have to go home.

What was that like?

The great thing about Memorial Hermon is they have what's called a peer mentor program.

So they have former patients with brain injury come in and talk to the families about life

after brain injury and what you might expect.

And then the doctors, actually, you have to go through, whoever's taking him home has to

go through mandatory brain injury training, you know, and it's all done in the hospital

or in rehab.

And you can't take that patient home unless you are present for that training.

They just don't let you do it.

Of course, we didn't know what to expect because he was a brand new person.

He was very different from what he was before.

And he and I moved in with my mom and it was very rough trying to get him to go to rehab.

He just was in denial.

Say, but you had a brain injury and you're sick, you still, and he didn't want to hear

any of anything.

I mean, he would take me down to the floor.

Big guy, just, yeah, I don't want to go.

He had, I had to lay down with him every night so that he could go to sleep, hold his hand.

He had a condition called hemihydrosis.

Cleared up after about six months, thank God.

What it is, is it's dysregulation of body temperature.

Like the thermostat is broken.

And so only one half of his body would sweat.

I mean, profusely.

It was unbelievable.

For some reason, it was closer to bedtime that this would happen.

So I'd have to pack Ziploc bags full of ice and put it on his body so he could calm down

and go to sleep.

And then this was all night long because, you know, when your body warms up, it melts

the ice.

So you have to take it, dump it, refill it.

But thank goodness that cleared up.

Well, let me ask you this because I'm listening to you and I'm thinking, I'm just thinking as

a mom, you know, if my daughter had this, I would definitely be there for her.

But at some point, I'm going to be exhausted.

And I'm sure you were.

Did you have any kind of a support system?

Very little.

Very little.

Very little.

This is the thing that I've learned and from talking to other, from doctors and nurses

and other people in the brain injury arena is that, and this is true for any injury,

what happens after the initial acute phase, you know, family comes, friends, everybody,

even his football buddies, everybody's at the hospital wondering.

And then it's like, once they say, okay, he's good, he's going to go home, people disappear.

It's just, it's a strange thing that happens.

There was very little support except for being at my mom's.

I mean, I had friends that would come by and visit.

But it's different to visit than to be there for a whole night so that you can go to sleep

and that you, somebody else can do the ice packs.

Yeah, it wasn't happening.

It just wasn't.

Do you remember the ice packs?

Do you remember that?

Mm-hmm.

Whenever, I feel funny whenever I'm around, it's like bags.

That's true.

BJ, oh my God.

Kept them in business.

This is so good.

What are some of the biggest misconceptions that people have about traumatic brain injuries?

Mm-hmm.

There are a lot of misconceptions.

So like I told you, BJ has, it's an invisible injury.

Sometimes you hear people say, man, you're doing so great, you know, just trying to think

some of the things like, you know, I have, I have trouble word finding too, or, you know,

man, just, you know, get over it, man.

You look good.

You just, you know, you can't assume that because he looks okay, that everything is okay.

Because a brain injury is not a broken arm.

It's an injured brain.

And so there are a lot of things that, that have improved greatly, but there are things that

remain.

BJ is definitely in denial about that.

I'm not in denial.

I've accepted, I've accepted me as being me.

You know what I'm saying?

I think that's wonderful.

Now, you know, she remembers what happened.

I put her through trauma, you know, I'm not gonna lie.

She sat in the hospital, slept on cots, you know, but I was out of it.

I don't remember the trauma.

That's God's gift to me is not remembering what happened through that.

She remembers, I don't.

You know, I can get past, past what happened, has happened, you know.

She, we're on two different streams.

I have a question for you.

Do you remember your life before the accident?

To an extent, yeah.

To an extent.

You remember, like, going to school, kindergarten, friends, things like that?

Yeah, I do.

Mm-hmm.

Yeah.

It's been, it's been a rough road, I'm not gonna lie.

This, this brain injury, the whole thing, you know, it's been a rough road.

But you have to wake up every day and say, hello, you know.

Hello.

Hello.

I love it.

You can't go back to sleep.

It's the point to the point, yeah.

Yeah, one of my notes I have that BJ discovered, his love for painting.

Yeah.

And I wanted to ask, what role has art played in your life, or your healing process?

Now listen, now listen.

Listen.

I do it all the time, you know.

I've tried it all, you know.

I've tried, I've tried work, I've tried women, I've tried, I've tried working out.

Hello, Mary.

I've tried working out.

I've got questions now.

I've tried school.

Let's make a movie.

Yeah.

I've tried school, I've tried even family, you know.

I've tried friends.

I've tried a lot of different things, you know.

Not to say that I can't go back to it, you know, and try again.

But art, really, it's always gonna be there.

It's always gonna be there, it's always gonna be at my side, you know, because it's a thing.

Yeah.

You know what I'm saying?

And it's there.

It's never gonna leave you, it's never gonna talk back.

It's never gonna leave you.

Right.

Talking back.

Now listen, don't, don't get me wrong, you know.

I've got some squeeze bottles, and whenever you leave them in the car for a few days, the

squeeze bottles begin to, begin to suck up.

You can tell the pain's unhappy.

Mm-hmm.

You know, it's a way, it's like, it's a way, it's a way of saying, what you, I'm in here,

I'm burning up, you know.

Get me out.

Get me out of here.

What you, you forgot about me.

What's the deal?

Yeah.

How do you choose your colors, BJ?

They choose me.

Ooh.

You know, I don't choose the colors.

I'm serious, man.

I did some painting.

I hung it this morning.

I did some painting.

It's called, uh, levels or layers or something, and I just, I poured it into a bottle in layers.

I got about five or six different cups, different colors, and I poured them layer over and over

and over, and I went outside, I put it on the table, and I just, bam, you know, and it was the emotional state of mind.

And it came out so elegantly, awesome.

It's the emotional state of mind, and I want to bring that to people.

I want to bring that to people that can't do it.

I want to bring a state of mind that I feel.

I want to bring that to people that can't do that.

Artificial devils.

You, uh, say that color, the art, the paints, the, the mediums that you use has an energy to it.

It does.

It does.

Just like colors.

You see the colors on the floor, the colors on the wall, the colors, the colors have energy.

Through what we can see, just like the books, the columns, the doors, they talk to us.

It's a special, it's so special.

Let's talk about advocacy for a minute.

I know that you've been an advocate for, like I said, many years.

You said over 20.

What are some of the biggest struggles that you feel that families face?

Definitely not enough support and understanding.

You know, according to the diagnosis of the family member of the child,

there's just not enough support across the board.

It's not just us.

It's everywhere.

We are eternally grateful for the waiver.

BJ is in self-direction now.

We are very grateful.

It allows me to take care of him.

But I will tell you, whenever we were with providers,

there were enormous challenges with caregivers.

We could be here.

Oh, I could write a book.

Oh, me too.

Let's make a movie.

I'm telling you.

We could do a podcast just on that.

I don't get me wrong.

I stayed at some of those.

What was those?

Respit centers.

Respit centers.

I had a good talk.

I stayed at this one respite center where they had a little.

Like a Goodwill.

Like a Goodwill thing, you know?

And they had like a little, like a little thing, you know, where the people would go in the daytime.

It was an awesome experience.

They played music and dance.

Oh.

Yeah, it was fun.

It was an awesome experience.

You know, it was an awesome experience.

That's right.

You never came out of the house.

I can relate to having caregiver issues.

I've had everything from neglect where I've had to put cameras and Lexi's, the whole house.

Right.

To people stealing from us.

Yes.

To people even stealing her own medication.

Yeah.

I've had those issues and I'm sure you guys can relate to that.

Yeah.

I've heard every story.

Let me just tell you a couple things that happened.

BJ has epilepsy because of his brain injury.

He had a daytime girl who, come to find out, she was low-level drug dealer.

And, of course, we didn't know, right?

And she was selling her drugs to BJ.

And, of course, brain injury is very susceptible to abusive drugs and alcohol.

It just goes with the territory.

One day I got a call from the provider and they said, get to Lafayette General.

BJ's been brought over there.

Well, what happened?

We can't tell you.

You need to go to the hospital and talk to the doctor.

So I got there and they had given him Ativan and he was knocked out.

And the doctor said he had a cluster of seizures, which is one seizure after another.

And if it's not handled, you can die from that, from seizures that don't stop.

I just had a really funny feeling.

And the girl was sweet.

She was beautiful.

Everything was, yes, ma'am, no, ma'am.

You know, what can I do?

And just very attentive.

And I just had a feeling.

I said, is there any way that we can do a drug test?

So he did.

And it came back positive for marijuana.

And he said, listen, like straight up marijuana is not going to cause a cluster of seizures.

But he said, what we've been seeing, now this was about six or seven years ago,

is there are additives to all this stuff.

So they're spraying stuff on drugs.

Yeah.

All kinds of different chemicals.

And he said, I suspect that that's what happened.

He got a hold of something that had an additive in it.

More than toxic.

Right.

That caused it.

I asked him, I said, well, BJ doesn't drive.

He'll never drive.

I said, who brought these drugs to you?

And he wouldn't tell me.

Until finally he said it was my caregiver.

I said, what caregiver?

I said, do you have her phone number?

And I found out, I did some research before he called her, and I found out Louisiana is

a one-party consent state.

So it was totally legal for me to film him talking to her.

And she didn't have to know that she was being recorded.

That's how the law reads.

In a lot of states, if you're recording someone, everybody involved in it needs to know that

it's being recorded, but not Louisiana.

As long as one person involved in the recording knows that it's legal.

Interesting.

So I filmed him talking to her, and they talked about the drug use, and she knew that he had

been in the hospital.

On the phone, he made a subsequent drug deal with her, and she promised she would bring more

to him on her next shift.

And I thought, you're going to jail.

So I called the provider, and I spoke to the director.

She said, don't you bring that recording over here, because we're not listening to it.

I said, you're kidding me.

This is your employee.

She said, I don't care.

Click.

Didn't want to hear it.

But what I found out later is that they already knew.

We brought it to the sheriff's department and met with the head of narcotics, and he goes,

Ms. Smith, he said, we are going to arrest this.

In fact, Bobby Giedro's called me the next day.

He said, Kim, I promise you, when we find her, we're arresting her.

She's going to be prosecuted.

It got reported to health standards, right?

And they came in and did an investigation.

They took a copy of the recording from the sheriff's department, and it came back unsubstantiated

because the investigator couldn't understand the recording.

I said, well, the sheriff and the head of narcotics could understand it because they wanted

to, there was probable cause.

They wanted to arrest her.

And so the sheriff's department said, we're sorry.

There's nothing we can do.

If the state finds no cause, even with a recording, even though it was a recording that the sheriff

and the head of narcotics understood, it was a no-go.

Well, guess what had happened?

She had been tipped off.

I suspect, I don't know for sure, but I suspect she had been tipped off by the provider company,

and she left the state for a whole year.

Yeah, so she couldn't be prosecuted.

That's the lapse of statute of limitations.

These are the kind of things, Mary, that we have, there's tons of other stories.

It's just, and listen, for some reason, provider companies are in denial about this crisis in

the workforce.

I won't go into too much detail other than I can relate.

I had, before with the Medicaid waiver, I did have two providers that provided respite care

for Lexi, and I knew that they did not do drug screening, so I ended up paying for my own.

There's like a company that does drug screening, so I'd send employees to go there.

Even just me telling them that they had to get drug screened, we did out a lot of people.

And yes, that was a play on words.

But then I ended up going into self-direction, where I can hire and fire my own employees,

which has been a game changer for us, and that's been a great thing.

We've had, unfortunately, there are workers that will get into this industry to take advantage

of people like BJ or my daughter, because they know that there's medication there.

Yeah, it is unfortunate.

What do you think needs to change in terms of awareness, health care, policies?

What do you think should...

Oh God, where do we start?

Yeah, it's probably a laundry list.

It is a laundry list.

I think when it comes to the hiring, training, you know, employing of people to come into

the disability arena to give care, there has to be mandatory drug testing on hire.

There has to be.

There has to be.

The reason I was told that they don't do it is because it costs them money.

So it's okay to compromise the health and safety of the client?

Apparently it is.

Apparently it is.

And this is where I have gone round and round with the state about this.

Over the years, I've taken my family to meet with OCDD.

Last year, me and another mom advocate went to see LDH twice.

We've been in quite a few meetings.

And I'm not sure...

Over the past 10 years, I've been involved in meeting with state offices.

There has been no change.

There has been no recognition of this.

There has been no follow-up on any of the meetings.

Like, what are y'all going to do?

I have no doubt in my mind that you are 100% correct.

And that...

Because I've had my own challenges.

I've brought up things to LDH from elderly protective services to an issue with my daughter,

with one of the caretakers with neglect and actually physically hurting my daughter.

I had an investigator come to the house.

I gave her everything, the footage, everything.

And it's like it died.

It was like crickets after that.

I'm like, well, what did you do with the information I gave you?

And I tried to follow up and I got nothing.

I have heard this from all of my friends, my disability mom friends.

I have heard the same thing over and over and over again.

So my thing is, what is our reporting agencies?

What are they doing?

These are people...

Why are they employing people?

Where or...

Where's the leadership in this?

Apparently, there is no leadership in the state of Louisiana.

There isn't.

And the oversight is just...

It's abysmal.

It's a joke.

No one wants to admit that this problem...

Okay, so let me tell you what happened.

Back in about...

So my mom...

So let me just say this.

I'm getting...

Yeah.

BJ is not our family's first experience with brain injury.

My youngest brother, Brett, was born in 1971.

And he had a brain injury due to traumatic birth.

It's called an anoxic brain injury.

So he didn't get enough oxygen during labor.

And he spent his whole life was affected because of this brain injury.

And so I grew up like people would often ask my mom, you know, like we'd be out in public

and people would be staring because he was very, very loud.

And he had a very pronounced speech impediment.

So he sounded like he was talking another language.

She would...

She'd say, my son has a brain injury.

That's...

I grew up hearing this my whole life.

So my parents divorced when he was nine.

My mom went from being a stay-at-home mom to having to work.

And she couldn't have...

She couldn't care for all of us.

So my dad put him in an ICF, an intermediate care facility, which we call institutional care,

in Ruston, up there by Grambling.

Now, this place closed in 2010.

But so when he was nine years old, he entered Ruston State School.

And he was there for 20 years.

We were very, very involved.

Like the state allowed 45 days every summer for him to come home.

And he came home for every single holiday.

Yeah, we were very involved.

The campus was outrageously beautiful.

And it had nice brick homes that you could go and stay.

So we'd bring crawfish and have crawfish boils and cook.

And up there in Ruston is famously known for their Peach Festival.

So we would go every year.

It was great fun.

What we didn't know, and my brother never breathed a word about it,

was the terrible things that were going on.

Yeah, the horrible abuse and neglect.

And so what happened was, after he came home, when they instituted the waiver,

they started to dismiss people from these programs.

You know, if there was a way for them to be at home with their families or get an apartment,

that's what happened.

He got an apartment, had a waiver.

He had caregivers.

My mom, the last 10 years of his life, my mom was his daytime caregiver.

And I would come every night.

So I was with BJ all day.

And I'd take care of my brother at night.

Well, he started to tell my mom some of the things that had happened to him.

And I remember him telling her that he and his cottage mates at night,

they would run out into the Pining Woods, and the workers would come back,

come get them, and then take them in time to their bed for the rest of the night

so they couldn't leave again.

But I told my mom, what were they running from?

A whole cottage full of clients?

Why were they running into the Pining Woods at night?

For what reason?

They were running from something and someone's.

There's no doubt about it.

That kind of opened up the floodgates.

And what happened was my brother had worked for a local Piggly Wiggly in Opelousas for 13 years.

He was a bag boy.

And he loved his job.

He was very well-known in the community.

I mean, you couldn't go anywhere with him.

People knew him everywhere we went.

He was very, very well-loved.

The last two years of his life, he had some very serious mental health issues.

So he was homicidal.

He was suicidal.

We saw him doing things we'd never seen before.

And so his doctor ended up saying, okay, here's the deal.

His sight meds are not working.

And that has to do with his brain injury.

And what happens is as we get older, especially with an injured brain,

there tends to be atrophy of the brain in some areas.

And he said, the areas of the brain that need the medicine are not accepting the medicine.

And he said, there's nothing we can do about that.

So they said, y'all have to start looking into long-term care.

Well, in the meantime, trying to find a remedy,

OCD recommended that he go into a day program.

And so we went with him, my mom and I, and interviewed.

He said, okay, he would go.

Well, let me tell you this.

He entered the day program.

And there was all this stuff going on with abuse and neglect.

It was crazy.

And I reached out to former Senator Albert Gilry,

because he has a grandson with a disability.

And I went to see him.

And I was telling him.

And I said, what do I need to do?

And he goes, Kim, you need to go before the legislature.

You have to.

Because he said, these people need to know what's going on.

I said, where do I go?

And he said, you need to go before the Joint Medicaid Oversight Committee.

It's called JMOC.

And he said, I know people that sit on that committee.

So he made an introduction by email.

And they accepted me going.

So I go there.

The thing that I'm happening was,

I go before this committee the summer of 2021.

And they allowed me to talk for 30 minutes.

And I told story after story about everything that had ever happened.

Yeah, you didn't hold back.

I didn't hold back at all.

And they were very gracious.

They listened.

They actually called up Julie Foster Hagen and Steve Rousseau,

who was an attorney for the state at that time.

And they questioned the hell out of them.

46 days after I gave testimony on abuse and neglect,

they killed my brother at the day program he was in.

And let me tell you what happened.

Because he was having all these outrageous behaviors,

one of the things we found out is that a lot of these psych meds,

one of the side effects is increased appetite.

And he was obsessed with food all the time.

All the time.

It was constant.

I was with him at night.

I'd help get him ready in the morning, you know, cook breakfast.

They had to bring a bag lunch.

One day while we're eating breakfast, he goes,

sometimes they eat my lunch on the bus.

Because the bus would come and get him, you know.

I said, Brett, why are you doing that?

Because you've just eaten a huge breakfast with coffee.

I know you're not hungry.

And he said, I don't know.

I think it's my brain.

Well, as soon as he left, I got on the phone.

Because this is my job as a caregiver.

Any change with a client, you let that team know.

This is what's going on with Brett.

It's a major issue.

It's a major issue.

And for two reasons, I did it, Mary.

Number one, to make sure that when it was lunchtime, he had a full lunch.

Yeah.

Right?

And number two, they needed to know that I was doing my job.

I packed his lunch every morning.

He was well fed for breakfast.

Because I knew if they suspected anything, they would report me, you know, for neglect.

So anyway, I called the program director.

And I told her what he said.

And I said, is there any way that I can give his lunch to the bus driver?

Because I have a feeling he's not going to stop.

And she said, no.

Mm-mm.

Nope.

She said, that bus driver's too busy.

She can't handle that.

Click.

Now, Mary, you and I both know that's called a reasonable accommodation.

Any kind of change that's going to help and ensure the health and safety of that client,

they're supposed to honor that.

And she didn't.

She totally ignored it.

So what happened was they went into a neighborhood to pick up another client.

And he started to eat his sandwich on the bus.

And he choked on it.

Ended up walking off the bus.

And he died right in the neighborhood where they were.

He fell in somebody's driveway.

And that's where he died.

I wish I had time.

I have the 911 calls from the trial.

There was a wrongful death trial, which was like killing him all over again.

There was no justice.

There was no justice.

I hate that for you.

Well, it's one of the things that I found out about a civil trial, we had no idea,

is that even though we sued, my parents sued, the day program, their insurance,

there is what's called a constellation of people around the victim that can be blamed, okay?

Nobody's going to go to jail.

They can sign accountability, anybody outside of that main entity that's being sued.

And I don't know how, well, what ended up happening was I got 25% of the blame

because the attorney said I bought my brother the sandwich.

My mom was like, what?

She said, no, Kim was the overnight.

She goes, she would have never bought bread a sandwich.

She goes, I took him grocery shopping.

I bought the sandwich for him.

It was crazy.

So listen to this.

The day program got 60%.

I got 25%.

My brother actually got 5% for his own death.

And the support coordination company got, I think, 15%.

I said, and we had a follow-up with the attorneys afterwards.

And I said, how did this happen?

Because none of it makes sense.

I said, and I schooled them about disability.

I said, my brother, as soon as he came out of the womb, he had 24-7 care.

He was 50 years old when he died.

You could not leave him alone.

You could not leave him alone.

And this is what I told him.

I said, I didn't determine that my brother needed 24-7 care.

The state of Louisiana did.

And I explained to them, I said, there's a 90L that has to be filled out every year by his doctor.

And that 90L says, this client needs to continue to receive care because his diagnosis will not change.

He was profoundly disabled.

And in spite of that, the jury still found that he was responsible.

I asked the attorney, I said, how did they come to that determination?

I mean, did they know anything about his diagnosis?

He said, well, they decided 5% because he was disobedient.

I said, you know what?

I said, your son who doesn't have a brain injury could maybe be found disobedient.

My brother didn't understand rules and regulations.

That meant nothing.

You have to think of the mindset of the person.

Yes.

He had the mind of a 10-year-old, a brain-injured 10-year-old.

And so I told him, I said, how in the world?

None of this makes sense.

I think in society, there's a real disconnect from the disability community.

And what does that mean whenever there's a huge injustice, whenever they lose their lives?

What does that mean to us, to parents, to clients?

What does that mean to society that there's no justice?

It doesn't make any sense.

And I think legislators need to be well aware.

Something has got to change.

Agreed.

Let's look in the future tense.

Let's see down the road.

What do you envision, you and BJ?

Yeah.

Getting a sinner to have five hyperbaric machines so we can re-energize society.

Have teachers to show us how to rejuvenate ourselves.

Because these hospitals are just doping us up and letting us go and sees what happens.

It's true.

They're just putting a band-aid on us.

Kim, what do you think?

One of the things I want to tell you about the work that we do, and this is a work of love,

and this is a lifetime kind of work, is that we lecture on brain injury awareness.

Brain Art Alliance is our non-profit.

You guys have a website?

We do.

It's called The Brain Art.

Okay.

And it just has a face page.

It's not complete yet.

And you guys are on Facebook too?

We are on Facebook under Brain Art Alliance.

So we lecture at universities.

We go to UL College of Nursing.

We go to LSU in New Orleans.

We lecture everywhere that we're invited.

And it's all about life after brain injury.

We advance art as medicine for healing trauma.

Love it.

Yeah.

Heal your brain.

Heal your life with art.

Looking into the future, we would really love to have a place where people with disabilities

can come and do art and have music.

BJ is a guest art teacher at St. Pierre Center for the Art, which is a division of leading

home care in Lafayette.

And there is a teacher there that BJ knew before she took the job.

So he's a guest art teacher there for people with disabilities.

You know, their clients come and BJ teaches them his technique and they absolutely love

it.

BJ was also chosen in December, a Louisiana public broadcasting sent over Dorothy Kendrick.

She's one of their producers for a segment called Art Rocks.

So they go around the state and they interview artists.

So he was chosen and it's a great segment.

Yeah.

It's a big deal.

That's a huge honor.

It's a big deal.

Do you have any final thoughts that you'd like to leave with our listeners about traumatic

brain injury?

It's not in the brain.

It's with the brain.

It's how you look at things in life and how you word things straight up.

I'm just saying.

We are co-creators of this universe.

Let's embrace it straight up.

I think people need to know that there are resources out there.

Louisiana has a traumatic brain injury.

It's a $50,000 one-time trust.

It's a lifetime trust.

So they don't actually give you the money.

It's in a trust.

So you can call them, tell them, you know, I need a modification of my, like they paid

for his bathroom to be modified.

They paid for steps, yeah, on the back porch with handrails.

I do want to thank both of you for being here.

You're welcome.

And that's going to close out this episode of this Ability Podcast.

Thank you, Mary.

Thank you, guys.

Of course.

Yes, ma'am.