Molly Guidry (Part One) Interview

Podcast Recorded in April 2019:

In this episode, Molly discusses her journey with daughter Ellie Grace, who has Down syndrome. We also talk about the various types of Down Syndrome: 

• Trisomy 21: About 95% of people with Down syndrome have Trisomy 21.2 With this type of Down syndrome, each cell in the body has 3 separate copies of chromosome 21 instead of the usual 2 copies.
• Translocation Down syndrome: This type accounts for a small percentage of people with Down syndrome (about 3%). This occurs when an extra part or a whole extra chromosome 21 is present, but it is attached or “trans-located” to a different chromosome rather than being a separate chromosome 21.
• Mosaic Down syndrome: This type affects about 2% of the people with Down syndrome.2 Mosaic means mixture or combination. For children with mosaic Down syndrome, some of their cells have 3 copies of chromosome 21, but other cells have the typical two copies of chromosome 21. Children with mosaic Down syndrome may have the same features as other children with Down syndrome. However, they may have fewer features of the condition due to the presence of some (or many) cells with a typical number of chromosomes.

Transcript

Speaker 1 (00:09):

Thank you everyone for tuning in to this episode of This Ability Podcast. Today, our guest is Molly, as she is the media coordinator for the Down's syndrome Association of Acadiana. Molly, thank you so much for being here today. Really appreciate you taking the time to come in and talk more about your organization. Tell me a little bit about what you do there.

Speaker 2 (00:29):

Well, thanks for having me. I'm so excited to be here. I've been with the Down's Syndrome Association of Acadiana for 12 years, doing the media work, so that's where I got the title media coordinator. My daughter is 12 and I joined the board right when she was born.

Speaker 1 (00:44):

Her diagnosis, when you guys found out that she had Down's syndrome and process that you went through?

Speaker 2 (00:50):

I found out I was having a baby and I found out that Ellie Grace had Down's syndrome before she was born, so it kind of prepared me a little bit. I was an older person having a child. I didn't get married until about 13 years ago. That's a misconception that's going on that, "Oh, it only happens to older ladies."

Speaker 1 (01:11):

Let's talk about that. I'm so happy that you mentioned that because we were looking at some statistics before we started to record this episode, and it did say that older mothers are more likely to have a baby affected by Down's syndrome than younger mothers, but that's really not true.

Speaker 2 (01:27):

That's not true. It's just that the, let's just say for round numbers, the pool of women over say 39 or 40, having babies say there's 10 in the whole world. So, if two or three of them have a baby with Down's syndrome, they go, "Oh, the numbers are high," but there's only 10 people in the whole world at that age having... Where there's 10 billion mothers under 35 having babies, and there's 10,000 children with Down's syndrome born.

Speaker 1 (01:59):

You said that to me. That was a misconception that I had, and I've been in the special needs community for a long time, over 20 years, and I've never heard anyone put it like that. She's absolutely right. Because I was thinking that, yes, the odds of you having a child with Down's syndrome, your odds go up whenever you're older, but then it's like you just cleared it up for me and I think for thousands of people that are listening. So, thank you for doing that, Molly.

Speaker 2 (02:25):

You're welcome.

Speaker 1 (02:25):

All right, so tell us more about the initial diagnosis

Speaker 2 (02:30):

Yeah, I was told Ellie Grace would have Down's syndrome, and this was my first child. The first day, I couldn't even say it. I was like, "What? What?" Because everything you look at on the internet is the worst case scenario ever. Everything in anything that could happen to that child and you're like, "What? Oh my gosh." But they don't put what's typical, they don't put the regular stuff. And so you're like, "Oh, I got this." So, after one day, and then I was speaking with people that had children with Down's syndrome and I was like, "Okay." I got to interact with them and stuff.

(03:05):

So, then I was just, this is, "I'm ready to go. We're fine with this. It's just like any other child you're going to have." They have the same feelings, they have the same hurts, they have the same crushes. They say, "Oh, they're always happy." Yes, their disposition is the most happiest that you will ever meet in any individual, but they do get their feelings hurt, they do get upset, they do have crushes and love interest and their friends tease them, they don't like that, just like any typical kid. But yes, their disposition is more jolly than anybody else.

Speaker 1 (03:36):

Can you tell me, because I don't know the statistics right off, but how many people there are in Acadiana that have been diagnosed with Down's syndrome or what the numbers might look like for this area or Louisiana in general?

Speaker 2 (03:49):

I don't know the statistics for this area, but I do know that our organization is growing. We do cover seven parishes, but we do cover the state as well because there are people in Shreveport, Bossier City, Alexandria area that do not have a chapter up there, and they come down for the things that we put on, the events that we put on down here. Thibodaux has a strong chapter, New Orleans has a strong chapter, and there's some other smaller ones, Lake Charles, Baton Rouge.

Speaker 1 (04:21):

This is an aspect of special needs that I haven't covered yet in any podcast episode, but it's got to be something on your mind because she's 12 years old?

Speaker 2 (04:29):

Yes.

Speaker 1 (04:30):

Right, and talking about feelings and emotions and having a crush, how do you feel about her dating and talking about puberty? Have you had some challenges with that, just being a mom within this... I'm sure you get all kinds of professional advice, but this is your daughter you're talking about.

Speaker 2 (04:47):

Right. We've been very fortunate to have this speaker come down. We have spring conferences and we put on here in Acadiana, and we get world-renowned people to come down. And Terri Couwenhoven came in and she has these books about how boys become men and girls become women, and they're first grade read. Simple, simple read. Pictures, but just to show different changes and stuff, and a first-grader can read it. Very simple, to the point, and that has been a huge help. It is just great. That book is just wonderful. In fact, my mother read it and she said, "I wish I'd have had this when I was going through this to give me some information."

Speaker 1 (05:28):

I think a lot of people could benefit.

Speaker 2 (05:30):

And my friend has a boy and she uses it all the time for her son. That is a challenge because it's to make them aware of things that a typical child would catch on to maybe a little bit quicker, because people with Down's syndrome, they do everything that typical children do, they just do it a different time, a different timeframe. So, sometimes that mental timeframe may not be up with what the body is doing. So, we're getting ready to cross that bridge anytime now, and so I've been trying to talk with her about different things and what's private and what's public, and just different things like that. But that book is just phenomenal. I promote that book everywhere I go.

Speaker 1 (06:10):

I'd like for you to educate me and our listeners. There can be a broad spectrum, like autism for example. With Down's syndrome, are there certain physical attributes that are more common?

Speaker 2 (06:21):

They would physically have a lot of similarities. Some children with Down's syndrome have heart defects, or you'll see a lot of them with glasses, some do not. Your family history comes into play with that too, of course, making up the chromosomes that make them. Trisomy 21 is the most common Down's syndrome. Then they have transation and then they have mosaic. Mosaic, the way it is connected to make that third chromosome, they are the most high-functioning people with Down's syndrome. There's not a spectrum per se, but you will see higher-functioning people with Down's syndrome that talk well, write well, know how to go on the computer, and some that do not. And I think a lot of that has to do with the education and perhaps the home, what they have in the home. Do they have a computer? Or they've never been exposed to one. In the school, were they able to progress or did they just put them in a room and didn't do anything with them? That's why inclusion is so important. So, I think it does go with the community and the surroundings as to what can the child do.

Speaker 1 (07:24):

In front of us, you have this wonderful book that you were telling me about that if someone is pregnant and they know that they are expecting a child with Down's syndrome or they might've just had a baby that was diagnosed with Down's syndrome. Tell us more about the book and how can someone go about getting one?

Speaker 2 (07:39):

These are our binders. We have them at our office here in Lafayette, and we have them in the hospital. So, when a child is born to a family with... The child has Down's syndrome, this is given out by the hospital. We have the English version and we have the Spanish version, and it's a lot of information. It's a lot going on at one time, and this binder is just to help the mother or the caregiver to go over it at their time, so they don't have to sit down and read and absorb everything. The moment the child comes out and know what to do. A month later, they're like, "What about therapies? Or what about this?" We have a tab about therapies here in Acadiana. "What about some medical resources?" We have a tab about medical resources. They can read it at their leisure, at their timeframe when they're ready to absorb that information and pursue that avenue.

Speaker 1 (08:26):

Whenever Alexi was diagnosed with her condition, lissencephaly, she didn't have just lissencephaly, she had epilepsy. She also had acid reflux and had to get a feeding tube. So, there were multiple things that we've had to deal with, scoliosis. And it can get overwhelming with the information, especially if you Google it and then you start seeing all kinds of things that it's like, "Oh, my gosh." There's a lot of opinion, a lot of, quote, unquote, experts. You're not really sure what to take at face value and people can have different medical opinions as well, and then they put them out there. I find, of course, having a good organization, like your organization, to give out some good trustworthy information is a great resource for parents and for the individuals that have Down's syndrome. Tell us more about your organization.

Speaker 2 (09:16):

We have been in existence for 14 years here in Acadiana. At our office, we have a lending library which has several books, Terri Couwenhoven's is one of them that is there that you can check out, similar to the library, look at it, read about what you're struggling with or going through and want some more information about. You can always call the office or go online and get that and visit us and see... We try to put on something just about every month and we try to break it into the smaller children, the middle-aged children and then the older children. And one of the things that we have for the older children that we have four times a year is Cool, I Can Cook. So, we get a local chef and it teaches them cleanliness, safety in the kitchen, portion control and all these other things.

(10:00):

They're really learning, but they don't think so because they're cooking. You have to use a fourth of this and a third of that. And so, some of them read and some of them don't, but we call it Cooking by Color. That's another book that we have. And so every fourth teaspoon, tablespoon, cup is blue, every third is red. So, in the book it'll show the red. So, even if they don't know what a third or a fourth is, they can cook by color and they can pick the correct utensil because of the color and still feel that they've accomplished something that they can do this, that they've made this, and then after that they eat it. Some of them have gone on and cooked it at their house, and have been inspired to cook spam spaghetti, hot dog spaghetti. But hey, they did it safely. They did it portion control. It was such an accomplishment for them.

(10:52):

We have little things going on. We partner with the Music Garden. We partner with the Little Gym. We have a summer camp going on swim camp, and we alternate that with our bike camp. The bike camp, we have the people come in and there's an 85% success rate of riding a two-wheel bike in one week. So, it's just wonderful things we try to do. We do do a spring conference where we bring in these renowned people that help the caregivers and the family and the people with Down's syndrome if they have any questions or anything that they're telling us they're struggling with, we try to get them in as well.

Speaker 1 (11:28):

Tell us why it's so important for people to socialize with other people that are similar to them.

Speaker 2 (11:35):

Well, it's always great to get out in the community and of course promote awareness and exception and inclusion. It breaks down those stigmas and it shows people that they're more alike than different, and they have more things in common. And they're just like, "Wow, that's just like my sister or my brother or cousin, and they don't have Down's syndrome." They see that they're people and not this stigma or this thing to be cast aside. People with Down's syndrome get married, they hold jobs. We have five that just graduated from UL last semester, they testify before Congress, they pay taxes, they get married and have love interest themselves. It's just like a typical person.

Speaker 1 (12:11):

Yeah, that's teaching them skills that they can use to empower them to understand how to do things like laundry and cooking and-

Speaker 2 (12:20):

Right, the cycle teaches that gives them transportation, they learn to ride the bike. And we do the people-first thing with people with Down's syndrome. So, my daughter wears glasses that could be called mobic. So, I don't say, "Hey, this is my mobic daughter, Ellie Grace." I say, "This is my daughter, Ellie Grace." When you look at her, you see, "Oh, she happens to have Down's syndrome." But you don't introduce them as, "This is my Down's syndrome child," or anything. It's people first because they are, they're people first. So, we always use the people first and we always say typical versus normal because really, what's normal?

Speaker 1 (12:58):

I have no idea.

Speaker 2 (13:00):

I was speaking at UL the other day and both parents work, most of them are divorced, some of them have two dads, some of them have two moms. There is no norm. So, it's typical children and then special children or Down's syndrome or any other disability, but I call it the abilities.

Speaker 1 (13:19):

Me too. That's why I call This Ability Podcast.

Speaker 2 (13:19):

This Ability. Yes.

Speaker 1 (13:19):

So, I like to focus on people's abilities, regardless of what their range of ability is.

Speaker 2 (13:28):

And the other thing to remember is Down's syndrome is not a disease. There's no medication to cure this. It's just a condition. And people with Down's syndrome are not afflicted by it, they don't suffer from it. It's just like you have red hair. This person has Down's syndrome. You have blue eyes, you don't suffer from it. This person just has Down's syndrome. Just to remember that it's not a disease, it's just a condition.

Speaker 1 (13:52):

We're in the year 2019, I think people are still learning about things that are politically correct. And of course, many years ago I have done away with the R word from my vocabulary, but I still hear it and people still say it and it bothers me, but I have to realize it's an education thing. So, if I just stop and talk to them and explain to them, "Please don't use the word retarded. Let's use another way of phrasing something as opposed to the way that you said it." And I think people do need to understand more about these conditions and what is typical or not typical. Like you said, getting away from what is, quote, unquote, normal.

Speaker 2 (14:31):

Right. There's a great thing that we have one version in the binder and it talks about Paris versus Holland. And it says, this husband and wife were getting ready for this trip and they've been saving money for this trip, and they wanted to go to Paris and they thought it would be great, and they learned French and they wanted to go get the French cuisine and the plane lands in Holland. And they're like, "What?" And after about a week, they're like, "Okay." So, they get new brochures and then they realize Holland's beautiful. They have windmills, they have tulips, they have chocolate, all this wonderful things. That's like having a child with Down's syndrome. You may have been preparing for a typical child and then a child with Down's syndrome came. It's just as beautiful a journey. It's just a different journey. It's just a different journey. And they're also the four-leaf clover. So, some people think the four-leaf clover is special or-

Speaker 1 (15:24):

Lucky.

Speaker 2 (15:24):

... lucky. Well, that's like having that extra chromosome with the trisomy 21, the four-leaf clover. They have that extra little chromosome, so they're like the four-leaf clover.

Speaker 1 (15:35):

I love that analogy. That should be the symbol for the Down Syndrome Association. Let's talk about employment. For people that own a business, I've always encouraged people to hire someone that has some form of a special need because I believe that employment should be for everyone that wants the opportunities. If someone has a business and they get an application from someone that has Down's syndrome, what advice do you have to someone that owns a business that's looking to hire someone that might possibly have Down's syndrome, expectations?

Speaker 2 (16:06):

I wouldn't hesitate at... I would definitely hire them. They're limited to what they can do. If you gear it to what you need and what they can do, it could be a beautiful match. They have the work ethics that nobody has ever seen. They want to go to work, they want to be there all the time, every day. They want to do it. Sometimes you get like, "Oh God, I got to go to work." They're like, "I get to go to work." They're so excited to be out, to be in the community, to be with people and be accepted in the community, that the work ethic is just phenomenal.

Speaker 1 (16:42):

There's so many people that I know that they take so much pride in their employment, and I think there's one, Kevin, that works at Chick-fil-A. He's been there over 20-something years. He loves it. I find they enjoy being around other people. For me, they always just light up my face with a smile and I think that positive vibe is contagious.

Speaker 2 (17:04):

Yes. I have an example. My sister lives in Atlanta. They have a public Superette over there. So, there was a person that works over there with Down's syndrome. His name is Joey. He's the bagger. So, he greets the people and, "How you doing today?" And he's bagging their groceries, putting it in the basket, and the people leave. And one day the manager said to all the grocery clerks, he wants them to come up with something that would make people want to come back to their store. Nobody came up with anything, but Joey did.

(17:35):

Joey came up and had his dad help him type up things on the computer and print out little positive phrases, almost like little fortune cookies. "Have a good day. Keep smiling. Your future's bright." Just little phrases like that and put them on these little cards. And as he bagged the groceries, he'd put that card in the bag. So, people were finding that, so they would line up where he was bagging and the manager would say, "Yeah, but these other three are open." "No, we want Joey." And then, he found out what he was doing. He was the only one that took that challenge and did something with it. And those people were-

Speaker 1 (18:11):

What a brilliant idea. I would shop there and I'd want him to bag my groceries any day of the week.

Speaker 2 (18:16):

So, they have a lot to give back to the community and to their families, and they have a lot of ability.

Speaker 1 (18:23):

Are there any things that we haven't talked about that you would like us to cover?

Speaker 2 (18:27):

If you have any questions, you can visit us on Facebook or go to our website. A lot of stuff is on the web there, DSAA.info. And we'd be happy to talk with you or help you out if you have a family member that maybe has Down's syndrome or is about to have a baby with Down's syndrome or something-

Speaker 1 (18:47):

Adopted one.

Speaker 2 (18:47):

Adopting. And you just want some more information, we do have a wonderful chapter here. We are willing to lend out and help people and see what's going on. And I'm so glad that God chose me to be Ellie Grace's mom because she has brought such joy and unconditional love and laughter to our family and everybody that she has touched in her school.

Speaker 1 (19:10):

I have met her. I can see the joy in her face and she spreads joy to other people around her, and I think she gets that from her mom. Thank you again for being here today, Molly. Really appreciate your insight.

Speaker 2 (19:20):

Oh, thank you so much for having me.