Molly Guidry (Part Two) Interview

In this episode, Molly Guidry discusses the programs with the Down Syndrome Association of Acadiana, having a teenager with Down syndrome and her significant accomplishments.

Transcript

Mary Baudoin (00:00):

Thank you for joining us for this episode of This Ability podcast. I'm your host, Mary Baudoin, and thank you for joining us today. We have our guest, Molly Guidry, an advocate for individuals with Down syndrome and also the current president of the Down Syndrome Association of Acadiana.

(00:19):

Molly, thank you so much for joining us. This is our second interview together. I'm really excited that you're here, so I'd like to catch up with you and see how your family's doing and see what activities you guys have going on for the Down Syndrome Association.

Molly Guidry (00:32):

Yes, I'm real excited. Thanks for having me, and I'm great to be back. The Down Syndrome Association of Acadiana or DSAA has been a staple in the Acadiana community for 20 years. We exist with the purpose is to promote advocacy, acceptance and belonging of individuals with Down syndrome here in our community.

(00:51):

We are a nonprofit organization and we do all aspects of life from pre-birth to adulthood. We have an information library at our office that people can come check out books or videos if they need something that they're working on potty training or maybe maturing into adulthood. So we inspire to reshape the way people understand and experience Down syndrome.

Mary Baudoin (01:16):

Speaking of that, we know that you have your daughter, Ellie Grace. How old is she now?

Molly Guidry (01:20):

17.

Mary Baudoin (01:20):

17. Oh my gosh. Time flies, right?

Molly Guidry (01:24):

Yes.

Mary Baudoin (01:24):

I think when you were here last she was 12. Was there a particular moment that you would consider a turning point in her life or in your life with her diagnosis?

Molly Guidry (01:33):

Well, she was in pre-K, and we were taking her to school, and at the time she was still in pull-ups. And I remember writing her name on her pull-ups because you had to label everything. She asked me, "What you doing?" And I said, "I'm writing your name." And all of a sudden she goes, "E-L-L-I-E." That just, I couldn't believe in pre-K she was spelling so clear and so strong and her ability to do that. And that was, "Oh, okay, we got something going on here."

Mary Baudoin (02:04):

I love it. I love it. Because again, the name of the podcast is This Ability, and I love to focus on not the things that they can't do, but the things they can do. I have a daughter who's on the profound level, but she is able to do certain things, and so when I can highlight those, it just, it's a good, good feeling.

Molly Guidry (02:22):

Yes.

Mary Baudoin (02:23):

Tell me what's been one of the most challenging situations that you guys have faced together?

Molly Guidry (02:29):

Well, recently we had some medical stuff come about that I have not experienced. We're trying to find doctors and because she's 17, the most challenging right now is the pediatric doctors don't want to see her because she's about to age out. The typical doctors for 18 and above are for adults will not see her because she's not 18.

(02:51):

And so I keep arguing, "Well, do you have a tween doctor? Because you're legally supposed to see her till she's 18." That's what I've struggling with for several months now, and I never thought of that before.

Mary Baudoin (03:02):

And Molly, I think you really touched on a great point here that a lot of special needs parents do have to contemplate and deal with. Lexi, my daughter is 26, she'll be 27 tomorrow. Yeah, a shout out to Lexi because the doctors said she would only live to be no more than five years old. So they were wrong.

(03:24):

But whenever she was going through that transition of being 18, and certain doctors would say, "Well, we can't see her anymore." Now I will say this and I am not going to rat out who did it, but there were several physicians who said, "Well, we'll see her until she's 21." So that was a huge help.

(03:41):

Then we did have, I guess like a team for her to try to transition, but it was mainly me finding... We live in Louisiana, right? We were based here in Lafayette. I know like us, you guys are willing to travel. I'm willing to travel,-

Molly Guidry (03:57):

Yes.

Mary Baudoin (03:58):

... and if we needed to go to New Orleans, Shreveport, Texas, wherever, we were going to do that for Lexi.

Molly Guidry (04:05):

Absolutely.

Mary Baudoin (04:05):

Because there's also, like you touched on, there's also multiple doctors. It's not just a pediatrician or a general practitioner now, you're dealing with neurology. Lexi has a gastroenterologist, a urologist, I don't know. There's all kind of-

Molly Guidry (04:20):

The blood doctor, the thyroid doctor.

Mary Baudoin (04:23):

Right. It's kind of hard to keep track of all these different doctors too, especially when you're transitioning to getting a new group when you've been with one. We've been with one gastroenterologist for 18 years, and then we have to switch to someone new and they have to learn her all over again, and that's a process.

Molly Guidry (04:41):

Yes.

Mary Baudoin (04:42):

What do you do?

Molly Guidry (04:43):

I've gone to friends and my general doctor is ready to do recommendations, there's no problem with that. The problem is the doctors that we're trying to see will not see her because of the age. So that's where we run into, "She's still ped's." "No, she..." "Yes, she is." "No, she's not." That's the problem we're getting into.

Mary Baudoin (05:03):

I'll mention this because I think some people in our audience can probably relate to this. With Alexis, physically, so age-wise, yes, she's 26. Her body, she's very tiny.

Molly Guidry (05:14):

Yes.

Mary Baudoin (05:14):

You've seen her. She does weigh under 100 pounds. She probably weighs no more than 70 pounds. She's a little bitty thing, right? So whenever she has to be admitted to the hospital, she really should go on the ped's floor because she is small.

(05:29):

From the IVs that they need to put in her arm to the blood pressure cuff, all of those things, the pulse ox, all of that, but they'll admit her to the regular floor because of her age. So things are not modified to her size and even the hospital gowns, they're humongous on her.

(05:48):

So neurologically she functions only on a four month old level, but physically she's at a 26-year-old level so I feel your pain there. And I know there's people listening that can also relate to what you're talking about.

(06:02):

I did want to ask about some good things. Can you share a moment of triumph or success that stands out as a significant accomplishment for Ellie Grace?

Molly Guidry (06:13):

Yes. So I was so excited when she learned to swim. She swims above water and below water, but that was normal for me because I'm a swimmer, so it it was like I expected that. But when she tied her shoe, that was a big accomplishment I found for her and myself and a big milestone that we crossed.

Mary Baudoin (06:34):

Okay, tell us why.

Molly Guidry (06:35):

Well, you look at your hands and look at your pinky. Her middle finger is not even as long as your pinky, so everything is shorter than that. So you're trying to move these little bitty fingers, twist this tie, this rope to tie it, and it just doesn't do because they're so small and the rope just doesn't quite do these little bitty fingers.

(06:57):

When she was able to tie her shoes, she was untying people's shoes in church. She was going down the pews. But she was-

Mary Baudoin (07:03):

Love it.

Molly Guidry (07:03):

... so impressed with herself. She beamed with that confidence that she knew how to do that. And sometimes I go talk with her class, especially when she was in the younger grades. Now she's in high school, but when she was in elementary and the middle school, I would go to the classroom and speak. I was just letting them know that everybody's different, but we're very much alike.

(07:25):

And so I would ask them in the third grade, "Who can swim?" Well, maybe four out of the 20 that was in the class. And it was like, "Well, Ellie Grace can swim." They're like, "Oh, wow. Oh, wow." It's like, "Who can tie their shoes?" Well, everybody but Ellie Grace could tie their shoes. I said, "You know what? Maybe she can help you to learn how to swim and you can help her to tie her shoes."

Mary Baudoin (07:45):

Nice.

Molly Guidry (07:45):

"And y'all can work together because y'all are friends. You're more alike than different." And it clicked with them because it was something that related to them.

Mary Baudoin (07:53):

Love that. That's a great story. Do you guys travel often? Do you guys like to take trips together?

Molly Guidry (07:58):

Yes.

Mary Baudoin (07:58):

And if so, what's your favorite place to go?

Molly Guidry (08:00):

Oh, last summer we did a seven-state tour. Sounds real impressive.

Mary Baudoin (08:04):

But it does.

Molly Guidry (08:05):

It was just the route we took. But we did go see people in Georgia. We went see people in North Carolina, then we went up to Kentucky and saw the Ark. The countryside, North Carolina and Kentucky were absolutely gorgeous.

Mary Baudoin (08:18):

Yeah.

Molly Guidry (08:19):

We came back through Nashville and went to the Grand Ole Opry.

Mary Baudoin (08:22):

Oh.

Molly Guidry (08:23):

So we just made a round of it. Just love seeing the surroundings. We usually have people or friends in every state. Our next trip that we're trying to do is Alaska. I have a friend that lives in Alaska,-

Mary Baudoin (08:35):

Wow.

Molly Guidry (08:35):

... and I think Ellie Grace would love it because on PBS, she watches Molly of Denali, which is in Alaska. She wants to go to Denali.

Mary Baudoin (08:43):

Wow. I might have to tote along with that one.

Molly Guidry (08:46):

You might need some help.

Mary Baudoin (08:47):

I have heard that the Alaskan cruise is beautiful to see. I don't know if you do the cruise ships or not-

Molly Guidry (08:52):

Oh, yes.

Mary Baudoin (08:53):

... but they say that's spectacular. What kind of music does Ellie Grace like to listen to or TV shows?

Molly Guidry (08:59):

Well, she likes LPB,-

Mary Baudoin (09:00):

LPB, yes.

Molly Guidry (09:00):

... okay?

Mary Baudoin (09:00):

Because I heard you mention that. I was like, okay.

Molly Guidry (09:00):

Yes, PBS, LPB. That's her station. Music, she likes Kid Bop. She loves Bruno Mars. She loves Pentatonix.

Mary Baudoin (09:10):

Nice.

Molly Guidry (09:11):

And she loves Katy Peerry. Not Perry, Peerry.

Mary Baudoin (09:14):

Is there a difference?

Molly Guidry (09:15):

Yes. It's Peerry.

Mary Baudoin (09:17):

Okay. I don't know Katy Peerry.

Molly Guidry (09:20):

No, I don't know Katy Peerry. I think it's because of the way it's spelt.

Mary Baudoin (09:23):

Okay.

Molly Guidry (09:23):

Because she also reads the Eiffel Tower instead of the Eiffel Tower because it's an E.

Mary Baudoin (09:28):

Okay.

Molly Guidry (09:29):

So I think she's stressing the E, is what I'm understanding.

Mary Baudoin (09:32):

Well, I might have to look that up.

Molly Guidry (09:33):

Taylor Swift.

Mary Baudoin (09:34):

Yeah.

Molly Guidry (09:34):

Most of the stuff that teenagers are into, she's into.

Mary Baudoin (09:38):

Nice.

Molly Guidry (09:38):

Good deal.

Mary Baudoin (09:39):

Is there a particular life lesson you've learned that you would like to pass on to others? You've probably got a bunch.

Molly Guidry (09:46):

I have. I'm trying to pick one.

Mary Baudoin (09:50):

You could probably write a book.

Molly Guidry (09:52):

Oh, yes. Most mothers of special needs kids can-

Mary Baudoin (09:55):

Yeah.

Molly Guidry (09:55):

... and probably should.

Mary Baudoin (09:57):

Yeah. Yeah. If you had to simplify it, when you just think overall of having a daughter who's different than everybody else, what would you say that life lesson is?

Molly Guidry (10:08):

As a parent, you always want the best for your child. And as a parent of a child with special needs, they don't have that voice. They don't have that platform until they're older and sometimes they still don't have. You really need to step out of maybe your comfort zone to make sure that they get what they need so they can succeed.

(10:27):

Well, I always try to give a little history about Down syndrome-

Mary Baudoin (10:30):

I love that.

Molly Guidry (10:30):

... so people can understand a little bit more about Down syndrome. So it was named after a British doctor who discovered it. He's the one that discovered it under the microscope-

Mary Baudoin (10:40):

Okay.

Molly Guidry (10:41):

... and did the testing in the late 1800s, early 1900s.

Mary Baudoin (10:44):

Got it.

Molly Guidry (10:44):

And his name was John Langdon Down. So it's called Down syndrome. Now, if his last name would've been Bernard, it'd been called Bernard syndrome. So the D is always capitalized.

Mary Baudoin (10:58):

And I'm so glad you pointed that out because I had capitalized the D and the S and you're like, "Nope, only the D is." I guess for some reason I'm thinking that Down is I don't know, something to do with-

Molly Guidry (11:11):

With the syndrome itself, yeah.

Mary Baudoin (11:12):

... the syndrome itself and not a man's name.

Molly Guidry (11:14):

Name.

Mary Baudoin (11:14):

Okay.

Molly Guidry (11:15):

Yes. So it could have been called Bernard syndrome,-

Mary Baudoin (11:17):

Right.

Molly Guidry (11:18):

... which Bernard would always be capitalized as the name. The S is not capitalized if you're talking about Down syndrome. But if it's in a title such as the Down Syndrome Association of Acadiana, then it's capitalized.

Mary Baudoin (11:30):

Right.

Molly Guidry (11:31):

So if you're writing something with Down syndrome, the D is always capitalized.

Mary Baudoin (11:36):

Gotcha. So he was studying it, and I guess at that time, did he have multiple people that he was testing on or what did he discover?

Molly Guidry (11:47):

It used to be called mongoloidism,-

Mary Baudoin (11:49):

Mm-hmm.

Molly Guidry (11:49):

... okay? Because the people from Mongolia have the same type of slanted eyes, the smaller features. He was going with that and then he started realizing it's not just in Mongolia that these people look like this and that's when he discovered the syndrome itself.

(12:07):

Which was when a chromosome, the 21st chromosome, either you have three of them or it attaches to other chromosomes. So when it attaches to 14, you can have autism or 17, you can have different things. So it could attach to multiple chromosomes. Usually it's three of the 21st chromosome, which makes Down syndrome.

(12:27):

Down syndrome occurs one in every 700 births. And they think, "Oh, it's because the ladies are older." That's a-

Mary Baudoin (12:33):

Go ahead and give us how that really breaks down. Because it's really not the age-

Molly Guidry (12:38):

No.

Mary Baudoin (12:38):

... that has to do with it.

Molly Guidry (12:39):

No, it's not. So more women that are in the 18 to 30 age have children with Down syndrome than older women. And so I'm going to break it down very simple. Say in the whole world, 100 women are having babies. I just said one in 700. So you might have two or three actually, because sometimes you'll skip a few and you won't have any, so let's just say three.

(13:07):

And you go, "Oh, three out of 100, two out of 100, that's nothing," okay? But the women that are older, that are 35 to 45 having children, there's only four in the whole world. So when one or two of them come out with Down syndrome, you go, "Oh, they have a higher risk." That's not really so it's just a smaller pool that you're choosing from.

Mary Baudoin (13:31):

Correct.

Molly Guidry (13:32):

So it seems like it's greater because it's a fourth or two-thirds of this pool. In reality, you have more of the 18 to 30 that have individual children with Down syndrome because it's a bigger pool.

Mary Baudoin (13:46):

I know you guys have a really good website. Can you remind us what that website is and also your Facebook page?

Molly Guidry (13:52):

Dsaa.info. And the Down Syndrome Association of Acadiana on Facebook.

Mary Baudoin (14:00):

I hope that people check that information out and participate in the fundraiser.

Molly Guidry (14:04):

Down syndrome is a condition that your child has. It's not who your child is.

Mary Baudoin (14:09):

Right.

Molly Guidry (14:10):

So when you're introducing my daughter, Ellie Grace, I don't say, "This is my Down syndrome daughter, Ellie Grace." I say, "This is my daughter, Ellie Grace." And she doesn't suffer from it just like you don't suffer from having red hair.

Mary Baudoin (14:24):

You mentioned to me one time before, it's people first.

Molly Guidry (14:27):

People first.

Mary Baudoin (14:28):

People first, and I love that. That has helped me to also remember to introduce my daughter because she is in a wheelchair.

Molly Guidry (14:36):

Yes.

Mary Baudoin (14:36):

And you don't want to see the wheelchair first,-

Molly Guidry (14:38):

No, you want to see-

Mary Baudoin (14:39):

... you want to see the person.

Molly Guidry (14:39):

... the person, correct. And we use typical versus normal. We don't say, "Oh, she's in a normal class."

Mary Baudoin (14:44):

Right.

Molly Guidry (14:45):

Or, "She's with normal peers." No, there's no normal.

Mary Baudoin (14:48):

Trust me. I've searched the world-

Molly Guidry (14:50):

No, trust me, there's nothing, yeah.

Mary Baudoin (14:50):

... high and low for normal people. I don't know where they are.

Molly Guidry (14:53):

There are none. She's in a typical class or she goes to a typical class for PE or whatever the situation is.

Mary Baudoin (15:00):

Yeah.

Molly Guidry (15:01):

So it's typical versus normal.

Mary Baudoin (15:03):

Yeah.

Molly Guidry (15:03):

And so it's just different ways that you say things that can really make a difference.

Mary Baudoin (15:09):

Mm-hmm. Now, I will say this, education is key. I try not to get upset. We want to educate people. We don't want to get mad at them if they say the wrong thing, especially if they're young, they might-

Molly Guidry (15:19):

Right.

Mary Baudoin (15:19):

... not know better and maybe they've learned that from their parents.

Molly Guidry (15:21):

Their parents.

Mary Baudoin (15:22):

So it's always good to, let's say that you have Ellie Grace in the pediatrician's waiting room and a child comes up and says, "Hey, what's wrong with your daughter?" How would you respond to that?

Molly Guidry (15:34):

I usually say, "There's nothing wrong with her. Why, do you see something?" And then get to see what are they seeing? What made them say that? Maybe they noticed she was smaller than they were. Maybe her hands are very small. Maybe they noticed that. And then I see where they're going with that. "Her eyes look different."

Mary Baudoin (15:53):

Right.

Molly Guidry (15:53):

And I say, "Oh, well she has Down syndrome, but she likes to play with her dolls or she likes to play with cars or hey, do you like to swim? She loves to swim. Do you like to karaoke? Because that girl can karaoke like nobody's business probably from my house because it's always loud."

(16:10):

I try to get them involved as to what do they like? "Oh, she likes that too. And look, y'all could be best friends because y'all both list five different things that we just spoke about." By the end of the conversation, they're like, "Oh, okay, bye." Or, "Come play while we're waiting," or whatever.

Mary Baudoin (16:27):

Nice.

Molly Guidry (16:27):

It's just something they're not sure of, and their parents probably don't know either so they've not explained it to them. But I just point out the more alike than different.

Mary Baudoin (16:37):

What grade is she in right now in school?

Molly Guidry (16:40):

Tomorrow's her last day. She's going to be a junior this year.

Mary Baudoin (16:43):

Okay. Once she graduates, what do you think that she will do?

Molly Guidry (16:48):

Yes and no. It changes from day to day. If she would like to pursue school, they do have the UL LIFE Program that I think she would really like interacting with her-

Mary Baudoin (16:59):

Yes.

Molly Guidry (16:59):

... peers. If she doesn't and she wants to go to work, I think she would do great at a daycare because she takes very good care of her babies.

Mary Baudoin (17:07):

I have seen her baby dolls. How many baby-

Molly Guidry (17:09):

Yes.

Mary Baudoin (17:09):

... dolls does she have?

Molly Guidry (17:11):

I can't count them. I really can't. But all of them are fed and played with and if they don't play well with their sisters, get punished. So-

Mary Baudoin (17:18):

Love it.

Molly Guidry (17:19):

... it's a strict house, let me tell you. One of them must've done something horrible because I found her face down in the dirty hamper with it closed, with the lid closed.

Mary Baudoin (17:27):

Oh.

Molly Guidry (17:28):

She must've really done something. Yes. She likes to sign, sign language.

Mary Baudoin (17:32):

Oh, sign language.

Molly Guidry (17:33):

Yes. And she's been signing since she was in pre-K, so she's very fluent in it. I think maybe some kind of signing assistant or a helper of some kind.

Mary Baudoin (17:43):

American sign language is, I feel like it's starting to become a lot more common at UL, the University of Louisiana at Lafayette. They've actually just added a minor of American sign languages. It's a great way to communicate with everyone.

Molly Guidry (17:59):

Yes.

Mary Baudoin (17:59):

Even speaking people. I was taking a weekly class, right, so that's three hours and the entire class for the entire period we were quiet. It's so different to be in a room full of people with complete silence. But all of our attention was on the instructor and she was signing and we learned a lot.

(18:19):

It's just a beautiful language and I love keeping up with it. It's really easy to learn. Once you start,-

Molly Guidry (18:24):

It's very easy, yes.

Mary Baudoin (18:26):

... once you practice the alphabet and then you practice with someone or watch the YouTube videos or just keep up with it some way. Great way to communicate with people of any ability. Molly, do you have any final thoughts or words that you'd like to leave us with?

Molly Guidry (18:43):

Just want to let you know that the Down Syndrome Association of Acadian, we do a lot of things with the money that we raise and it-

Mary Baudoin (18:50):

Okay.

Molly Guidry (18:50):

... stays here in the community, okay? It stays right here. We're all volunteers. We have a part-time person-

Mary Baudoin (18:56):

Okay.

Molly Guidry (18:57):

... that helps us with the clerical stuff. She does a great job, but that's the only paid person, everybody else is volunteers. And so I'm going to list off a few things, but I want to show you how we get around these things.

Mary Baudoin (19:09):

Yeah.

Molly Guidry (19:09):

So, we have hip hop dance parties, we have a Christmas party, we have karaoke parties, we have painting parties.We partner with UL soccer and basketball for different clinics. We do Cool, I can Cook, which teaches them safety in the kitchen, portion control and how to follow a recipe.

(19:30):

And even if they don't know how to read, it's cooking by color. So every fourth is blue, every third is red, and it shows you a spoon or a cup. You can still follow the recipes. And then they have that sense of accomplishment and stuff.

(19:42):

And what I was saying about the parties, you think, "Oh, all they do is party." Hip hop. So that gets them moving off the sofa, interacting with their friends, getting some exercise, dancing, singing to the music. The same thing with the painting parties. You think, "Oh, they're sitting down and painting." But we have breaks where we get up and we sing songs or we play little games.

(20:03):

The karaoke, the same way. They're interacting with their peers. They're taking turns. They're learning to share. They're clapping for their peers, their peers are clapping for them. They have that acceptance. It's more than just a hip hop dance party.

Mary Baudoin (20:17):

Right.

Molly Guidry (20:17):

It's a lot more going into that and the kids feel that and they come away with that sense like, "Man, that was so cool with my friends and"-

Mary Baudoin (20:26):

Yes.

Molly Guidry (20:26):

... "we had a great time." They don't know that they're getting exercise. That's just-

Mary Baudoin (20:29):

Yeah, it's just like the Dreams Foundation has the bowling, which we bring Lexi to. There we see other people of different ages of different abilities. It's fantastic. And I think she feels like she's in her element and she's made new friends that way too that will come up. Even though Lexi is nonverbal, she has friends that will do enough talking for all of them, for everybody in the room.

Molly Guidry (20:54):

There's a couple of analogies to go by with when you're trying to describe Down syndrome to an individual that maybe doesn't have a family member or a friend. Why this happened or what's going on or your journey. So they always do the husband with the wife going to Paris and they arrived in London then they were expecting Paris. But I like this one as well.

(21:16):

Down syndrome can be compared to what happens in nature in a field of clover. Usually we see three leaves on the clover, but occasionally we find that extra leaf, which is a four leaf clover. But we don't know why Mother Nature did that. There's no obvious explanation. They grew in the same soil. They were exposed to the same sun and the same rain. Mother Nature just decided to add that extra leaf and some people call it a lucky four leaf clover.

(21:41):

That doesn't make it better or not as good as the other clovers. It's just different. Every time you see somebody with Down syndrome has this extra chromosome or any disability, which means other ability,-

Mary Baudoin (21:55):

Mm-hmm.

Molly Guidry (21:55):

... we don't know why that in Down syndrome, the cell divided unevenly. It doesn't make the baby better or not as good. It's just different and your journey is different.

(22:06):

Getting back to things like we were talking about with Ellie Grace. She didn't tie her shoes at seven years old. She tied her shoes at 12 years old. They get there. It's just a different timeframe. And if you have a person like that in your life with a different ability, consider yourself very lucky.

Mary Baudoin (22:22):

All right, Molly. Well, thank you so much for joining us today. We really appreciate it. Thank you all for listening to this episode of This Ability podcast. If you enjoyed listening to our podcast, be sure to like our Facebook page at This Ability podcast. Goodbye everyone, and thank you for listening.