Episode 57: Grace Strobel, Down Syndrome Advocate, Speaker, and Model

Intro Voices  00:04

Where do I go? It only happened once. I think I was singled out. The phone calls began about one month ago. What is hazing? Something happened to me when I was younger. I'm worried about my safety. He said he was sorry. Can someone help me? Where can I get help? Can someone help me?

 

This is You Matter, a podcast for the NYU community developed by the Department of Public Safety.

 

Karen Ortman  00:31

Hi, everyone, and welcome back to You Matter, a podcast created to teach, inspire and motivate members of the NYU community who have been victimized in some form or fashion and to identify resources both on and off campus that can help. I am your host Karen Ortman, Associate Vice President of Campus Safety Operations at the Department of Public Safety, and a retired law enforcement professional. Today, I welcome the Strobel family. Linda, Jeff and their daughter Grace. The Strobels are here to talk about Grace's role as a passionate Down Syndrome advocate and model whose mission is to change society's view and perception of people with disabilities. Linda, Jeff, and Grace. Welcome to You Matter.

 

Linda Strobel  01:22

Thank you.

 

Grace Strobel  01:23

Yeah, thank you.

 

Linda Strobel  01:23

We're glad to be here.

 

Grace Strobel  01:25

I know. We're glad to be here.

 

Jeff Strobel  01:27

Yes. Hi, Karen. Thank you. It's a pleasure to be here with you.

 

Karen Ortman  01:31

My pleasure as well. So nice to meet all of you. I think I'm going to start with Grace. And I'm going to ask Grace to tell me about herself.

 

Grace Strobel  01:40

Okay. Hi, I'm Grace Strobel and I'm 24 years old. I'm a model. I'm a speaker. I'm an athlete. I'm an advocate. About two years ago, I was working in a lunchroom. Some kids were making fun of me. When they made fun of me that day, I felt alone and hated. I cried so hard. That is when I decided I wanted to make a difference, and to share with students what it's like to have struggles.  I wanted to show how you can change those lives just by being kind and giving respect.

Karen Ortman  02:19

I love that. And who did you talk to about this? When you were having such a hard time?

 

Grace Strobel  02:26

Um, my mom.

 

Karen Ortman  02:29

Your mom? 

 

Grace Strobel  02:30

Yeah

 

Karen Ortman  02:31

That's great that you could talk to your mom. So tell me about the Grace effect?

 

Grace Strobel  02:38

Oh, yeah. The Grace Effect is a presentation I give to schools to teach about my life and having Down Syndrome, introduce the science of Down Syndrome, and the obstacles we face. That kindness, respect, and opportunity all deeply matter.

 

Karen Ortman  02:59

That's wonderful. Who do you give this presentation to?

 

Grace Strobel  03:06

About 3000 students.

 

Karen Ortman 03:10

Did you say 3000?

 

Grace Strobel  03:11

Yeah.

 

Karen Ortman  03:12

Wow. You've presented to over 3000 students? That's wonderful. 

 

Grace Strobel  03:16

Uh huh. 

 

Karen Ortman  03:17

How long have you been doing this?

 

Grace Strobel  03:20

About three years.

 

Karen Ortman  03:22

Three years. Why is your presentation so important to you?

 

Grace Strobel  03:28

Oh, yeah. I know it hurts me to see someone not included, left out or talked about, because I SOMETHING too. And I want to change that.

 

Karen Ortman  03:42

And what is your favorite part about doing this presentation?

 

Grace Strobel  03:45

Oh, yeah. My favorite part is the role playing because it teaches the kids about struggles.

 

Karen Ortman  03:55

And, you think the kids really take something away from it regarding how to treat people? 

 

Grace Strobel  04:01

Uh huh. 

 

Karen Ortman  04:03

That's wonderful. In becoming a speaker, what message do you want to send to people who are listening? 

 

Grace Strobel  04:14

No matter who you are, we want all the same things; to be valued, respected, and to feel good about ourselves.

 

Karen Ortman  04:24

I think that's wonderful. Jeff and Linda, you must be so proud. 

 

Linda Strobel  04:28

We are... 

 

Grace Strobel  04:29

I know we are.

 

Karen Ortman  04:31

Yeah. And you're proud of yourself Grace, that's good you should be. That's wonderful. So I'm going to talk to your parents really quick right now, okay, and I want to ask them, when did you two meet?

 

Jeff Strobel  04:44

We met while we were in junior high school actually. Both of us were in the band and when, I think, I was in seventh grade and Linda was in sixth, I saw this really cute blonde haired girl and I'm like, wow, who the heck is that? We were friends all the way through high school, although I wanted to be more Linda did not. So it was unrequited for quite a while. 

 

Karen Ortman  05:13

And he admits that. 

 

Jeff Strobel  05:15

Yeah.

 

Karen Ortman  05:15

Funny.

 

Jeff Strobel  05:17

I moved away after college and but then came back, I was actually in the Navy and I came home on leave, and gave Linda a call. We long distance dated for about six years and then got serious and got married and 27 years later, here we are.

 

Karen Ortman  05:33

Wow, good for the both of you. And Linda, is your story the same as Jeff's? 

 

Linda Strobel  05:41

Yeah. I would describe it as When Harry Met Sally, 

 

Karen Ortman  05:46

My favorite movie, by the way. 

 

Linda Strobel  05:47

Yeah, exactly. He was a little bit irritating and annoying, you know, when we were growing up. And then we went back and forth and dated, and then we dated other people, but we would just talk to each other about our days. 

 

Karen Ortman  06:02

Wow, that is When Harry met Sally.

Linda Strobel  06:04

Yeah, I didn't know what I had in my own backyard. 

 

Karen Ortman  06:08

Yeah. 

 

Linda Strobel  06:09

It was awesome. So... 

 

Karen Ortman  06:11

Oh, good for you. 

Linda Strobel  06:13

Yeah.

 

Karen Ortman  06:13

So you're married a long time. You have how many children?

 

Linda Strobel  06:18

We have two children. Grace is our oldest 24, and then we have another daughter, 23.

 

Karen Ortman  06:25

Okay. And when did you learn that you were having a child with a disability?

 

Linda Strobel  06:30

So at about the 16 week mark, we ran the alpha fetoprotein test and I got a call from my doctor and she said, Linda, are you sitting down, I have some news for you. She said Linda has a very high chance of having a child with Down Syndrome. At that moment, the world just came crashing down. That was not at all what I expected to hear. We decided not to do an amnio because we would not have changed our minds either way but, definitely the whole pregnancy, I had wondered, you know, did this child have Down Syndrome or not? 

 

Karen Ortman  07:14

Yeah. At that time, did you have any understanding of what that meant, having a child with Down Syndrome?

 

Linda Strobel  07:22

I did. You know, when I was going through high school, I volunteered at a summer camp for people with disabilities and for some crazy reason, I was very, very much attracted and intrigued by people with Down Syndrome and the children with Down Syndrome. That was a time before the internet, so I'd run home and asked my mom to please take me to the library. I would check out book after book about... 

 

Karen Ortman  07:53

Wow. 

Linda Strobel  07:55

...how it happens. 

 

Karen Ortman  07:58

That's interesting.

 

Linda Strobel  07:59

I didn't know what that meant and it was a scary thing to me. 

 

Karen Ortman  08:05

Yeah. When Grace was born, was she given a prognosis at birth?

 

Linda Strobel  08:14

She was. Because we didn't have the amnio, that was the first question out of my mouth. When, you know, she popped out, I said, does she have Down Syndrome? And basically, the whole room was quiet, dark. It was almost like a death had occurred. They said, yeah, they think that she did have Down Syndrome because of her low tone but they were going to run tests to make sure. So, they whisked her away and ran tests, we really didn't even get to hold her. There was just, kind of like a trauma. Yeah. 

 

Karen Ortman  08:58

So how did you feel at that moment? She's born, you ask if she has Down Syndrome. I'm sure that you got the sense that she did probably before they even answered. 

 

Linda Strobel  09:10

Yes. 

 

Karen Ortman  09:10

And how did you feel about that, in that moment?

 

Linda Strobel  09:16

I didn't know how to feel I was in complete shock. Having a child with a disability is something that you really don't prepare yourself for ahead of time. It was, you know, we had never had a child or sibling or anything like that with a disability in my family or my husband's family, although I was always very interested in people with disabilities, even in middle school and high school. We just had no personal experience so it was very traumatic. 

 

Karen Ortman  09:56

Yeah.

 

Linda Strobel  09:56

Not what you expect, and then you, kind of, get the vibe of the room that this is just an absolute horrible, horrible thing. 

Karen Ortman  10:08

Yeah. Was the medical community supportive following her birth?

 

Linda Strobel  10:16

You know, you have to think about 24 years ago was a very different time. We know a lot more and there's been so many advancements, it really was not a time of, we really didn't get anything helpful. The geneticists came in and basically just said, what she wouldn't be able to do. 

 

Karen Ortman  10:40

Wow. 

Linda Strobel  10:42

You know, you have a child with Down Syndrome and she will probably never read and she will probably never write... Really? ...she will probably never tie her own shoes, people with Down Syndrome are overweight, and they have dry skin, and they have thin hair... 

 

Karen Ortman  10:58

Was there anything positive said to you?

 

Linda Strobel  11:00

No. Not a thing. Also, at that time, 24 years ago, they said, if you cannot handle her, there's no shame in adopting her out, there's no shame in putting her in an institution. So there was nothing redeeming about any of that talk other than take her home and love her. 

 

Karen Ortman  11:24

Yeah.

 

Jeff Strobel  11:25

And bear in mind, this is while she's not even four hours old and we haven't had a chance to hold her yet. And, this is the news that we're getting, that it's okay to institutionalize her if we want to, I mean, it was devastating. But, I will tell you, I think that was when, at that instant when that genetic counselor said that, it lit a fire in Linda and - I had a case of the poor me's for a little bit longer than Linda did, but she snapped me out of it pretty quickly. She got to work and I followed her lead on this.

 

Karen Ortman  11:59

Yeah. And from a father's perspective, how were you feeling at the time of birth?

 

Jeff Strobel  12:07

Oh, you know, again, like Linda said, just devastated. Not for myself, but you know, Linda had carried this. We were both so excited throughout the entire pregnancy and the AFP came back, and that was a really tough couple of weeks for us, but we got through it and we're just like, you know, let's continue on and keep moving forward. I felt heartbroken while we were there, just for Linda, because she had taken such good care of herself. We were both so excited. We're fired up about this. The doctor and the nurses won't talk to us. The doctor finally comes in, and the genetic counselor comes in and gives us that news. Linda and I both just kind of clung to each other for a while.  I was never so glad to see a hospital in the rearview mirror as when we got out of there. Don't get me wrong, some of the nurses and medical staff were just absolutely wonderful to us and treated us so kindly, and - your daughter's beautiful, and we love her to death, and she's a joy and a treasure. But that was after we got the first good news. Like I said, from there, it's been - within challenges lie opportunities - and I do believe Grace was given to us as an opportunity to show what is possible?

 

Karen Ortman  13:37

Yeah. So I would venture to say that resources associated with having a child with a disability, specifically Down Syndrome were nonexistent as well 24 years ago?

 

Linda Strobel  13:51

Yeah, really, there were, there were support groups, that was about it. There wasn't a lot of medical help. What I'm talking about in medical help is that, when we brought Grace home, I didn't look at her like an accumulation of things wrong, what I wanted to do is separate things out. I wanted to look at her thyroid, I wanted to look at her diet. Now we know so many more things. Early thyroid treatment is huge, and I had to just fight for that because she stopped growing and I had to go through four different doctors, and I had to go out of state in order to get her on thyroid medication. That's just one example. We're evolving. Just through awareness, there's so much that can be done to improve the life and the quality of life and the opportunity and potential of somebody with Down Syndrome. You don't just look at it as an accumulation of things wrong, and just as a syndrome. 

 

Karen Ortman  15:13

Sure. I'm sure that it took no time at all after her birth that you found her to be the blessing and joy that she is.

 

Linda Strobel  15:22

It was, but you know, you're still in shock no matter what, but the thing that struck me funny is that everything that I was reading was always; expect delays - this delay that delay - and I wasn't seeing that. I was seeing her move along this continuum pretty close to the normal or neuro-typical growth chart or neuro-typical development. I think that's really where our mindset got changed, we were not looking for delays anymore, we were looking at pushing her to meet different kinds of expectations.

 

Karen Ortman  16:08

I think that's, that's awesome. Tell me about Grace's experience going through school.

 

Linda Strobel  16:23

Every year was a different kind of year. I homeschooled her, I started working with her when she was just an infant. Typically, that happens with most individuals with Down Syndrome, they start getting services around the age of three. We took a little different approach, we worked with her neural developmentally, meaning we worked on all aspects; cognitive, gross motor, fine motor, reading very early. We started teaching her sight words at the age of three and by the age of five she was reading sight words on a second grade level. We were always trying to push ahead so that when there were delays that we would have some push times. I will say that I homeschooled her for probably 24 years and am still doing it now. Depending on where she was at school and if we thought that she was getting challenged enough, I would either pull her out, or she would stay in, or I would do a half a day, but it was like any other parent will tell you, it's challenging. 

 

Karen Ortman  17:37

Yes. 

 

Linda Strobel  17:37

It's very challenging. 

Karen Ortman  17:39

How did you have the level of expertise required to address a lot of the issues that you were faced with? 

 

Linda Strobel  17:48

Okay, so, I was a pharmaceutical rep, and before Grace was born, I really, really wanted to go back to either be a physician assistant or a doctor and I was getting my two years undergrad. I was very interested in medicine, so when she was born, that's all I did, I just jumped in.  I was all self-taught I would research, there were groups out there that were doing alternative things like customized nutrition plans with lots of vitamins and minerals, and different kinds of diets and whatnot. I worked with my pediatrician as well. We just start doing things kind of outside of the box. Now, you look back at it and it was very progressive for the time, when you look at it today, it's not. Grace had problems, a lot of GI problems so we took gluten out of our diet and, sugar, and corn, we just cleaned up her diet. When we started doing that, we started seeing changes in her health, and then her ability to focus and function. 

 

Karen Ortman  19:09

Hey, Grace, was mom a good teacher?

 

Grace Strobel  19:11

Oh, yeah. 

 

Karen Ortman  19:12

Yeah? (laughing) You better say that. How about Dad? Was dad a good teacher? 

 

Grace Strobel  19:20

Oh, yes. 

 

Karen Ortman  19:20

Yeah? 

 

Grace Strobel  19:20

Yeah.

Karen Ortman  19:21

Okay. I believe you. What I want to know, I've seen some beautiful modeling photos of Miss grace and I am very impressed. They're stunning. You're absolutely beautiful. 

 

Grace Strobel  19:40

Thank you.

 

Karen Ortman  19:40

And I want to hear how you got into modeling.

Grace Strobel  19:43

Oh, yeah. When I was researching for the Grace Effect, I saw another girl who had Down Syndrome who was a model, so I asked my mom if I could be a model. She said, I don't see why not. So, we started on that journey that brought me here today.

 

Karen Ortman  20:06

So I didn't catch the last part of that. Could you repeat that?

 

Grace Strobel  20:10

Oh, yeah. So we started on that journey that brought me here today. 

 

Karen Ortman  20:17

Ah, okay. And tell me about your modeling. What does it require of you? What do you love about it? Do you love the dressing up and the makeup? What makes you happy about your pursuit of your modeling career?

 

Grace Strobel  20:38

Uh huh. Oh, yeah.

 

Karen Ortman  20:42

So you like, do you like wearing makeup?

 

Grace Strobel  20:44

I do. Yeah. I like modeling because then I feel good about myself. It helps others to believe in themselves.

 

Karen Ortman  20:59

And do you feel beautiful when you're modeling? And you look at the pictures afterwards? 

 

Grace Strobel  21:03

I do! Yep. I do.

 

Karen Ortman  21:05

You should. Because you are. And you are a role model for others.

Grace Strobel  21:13

I know. 

 

Karen Ortman  21:13

Right? 

 

Grace Strobel  21:14

It is so exciting. 

Karen Ortman  21:15

Yeah, and then people see that all kinds of beautiful people, no matter what they look like, can be a model and be in photographs...

 

Grace Strobel  21:25

Uh huh.

 

Karen Ortman  21:25

... like you are. So what is the coolest thing that you've gotten to do because of modeling? 

 

Grace Strobel  21:33

Oh my gosh.  I got to meet Hoda and Savannah. 

 

Karen Ortman  21:43

Hoda and Savannah on the Today Show?

 

Grace Strobel  21:46

It was so exciting? 

 

Karen Ortman  21:48

I bet.

 

Grace Strobel  21:49

I got to be on the Today Show. I got to meet Hoda and Savannah.

 

Karen Ortman  21:55

That's wonderful. Did you have a lot of chitchat, talk to them, have a girls conversation?

 

Grace Strobel  22:02

Uh huh. 

 

Karen Ortman  22:03

Yeah. 

 

Linda Strobel  22:04

What happened? What were people asking us on the street when we got done?

 

Grace Strobel  22:09

Oh yeah, can I have your article...?

 

Linda Strobel  22:11

Auto...

Grace Strobel  22:11

Article...?

 

Karen Ortman  22:16

Autograph?

 

Grace Strobel  22:17

Can I, can have your autograph?

 

Karen Ortman  22:21

Look at you! So you're famous, people want your autograph.

 

Grace Strobel  22:26

Oh, yeah.

 

Karen Ortman  22:27

Will you send me your autograph? 

 

Grace Strobel  22:30

Yeah.

 

Karen Ortman  22:30

Yeah. Will you send me an autographed photo? 

 

Grace Strobel  22:32

Sure.

 

Karen Ortman  22:32

Okay. I'll hang it in my office. 

 

Grace Strobel  22:37

Okay. 

 

Karen Ortman  22:37

So who inspires you Grace?

Grace Strobel  22:40

Well, my sister Laney inspires me. She's a dancer and I wanted to be like her too.

 

Karen Ortman  22:52

You want to be like your sister? 

 

Linda Strobel  22:53

Yeah.

 

Grace Strobel  22:55

Robin Stewart and Tony Gaffney and Lauren Potter from Glee. 

 

Karen Ortman  23:03

From Glee? Okay. 

 

Grace Strobel  23:04

Yeah.

 

Karen Ortman  23:05

So you like Glee?

 

Grace Strobel  23:07

Oh, yeah.

 

Karen Ortman  23:08

That is a fun show. I like that too. What are your future plans?

 

Grace Strobel  23:13

Oh, yeah, I want to keep on modeling and speaking. And, have people rethink what is possible.

 

Karen Ortman  23:24

That's perfect. So what do you put all this hard work into learning things...

 

Grace Strobel  23:31

Uh huh.

 

Karen Ortman  23:31

...and modeling. 

 

Grace Strobel  23:33

Uh huh.

 

Karen Ortman  23:33

What else do you do for fun?

 

Grace Strobel  23:37

Well, you know, I love to hang out with my friends. 

 

Karen Ortman  23:41

Okay. 

 

Grace Strobel  23:41

And I love movies. Texting a lot. 

Karen Ortman  23:47

Texting?

 

Grace Strobel  23:48

Yeah. I'm making tik-toks. 

 

Karen Ortman  23:55

Oh, you make tik-toks? 

 

Jeff Strobel  23:57

Yeah. 

 

Grace Strobel  23:57

Oh, yeah.

 

Karen Ortman  23:58

Oh, I have to look for you.

 

Grace Strobel  23:59

I know. I know so fun. 

 

Karen Ortman  24:02

Okay. Why do you think it's important that you're included in the beauty industry?

 

Grace Strobel  24:10

Oh, when I look through a magazine, I don't see people like myself. I think people with disabilities sometimes feel invisible. We want to be seen, heard and valued and in my modeling. It makes me feel like I belong.

 

Karen Ortman  24:30

I think that's wonderful. And, I think that's an outstanding message to give others. 

 

Grace Strobel  24:37

Uh huh.

 

Karen Ortman  24:38

Is there anything else that you want to share with listeners that I haven't asked you that you think is important for them to know about you, or your advocacy, or your modeling, or any of the good stuff that you do?

 

Grace Strobel  24:56

I gave....

Linda Strobel  25:00

What advice would you give to people that want to do what you might want to do or follow their dreams?

 

Grace Strobel  25:07

I know, be confident. I know, believe in yourself, work hard, and never give up. 

 

Karen Ortman  25:14

Ah, that's perfect.

 

Grace Strobel  25:15

Yeah. 

 

Karen Ortman  25:16

And Jeff, you've been very quiet as we're chatting over here. Is there anything that you would like to share with our listeners that I have not asked you?

 

Jeff Strobel  25:30

I guess the only thing I would like to add, is really just echo Grace, anything is possible. We got bad news on a birthday on the date of birth, and Linda and Grace have worked for 24 years to turn that into something positive. Through that, Grace is showing the art of the possible, and that everybody in society has a voice, has a presence, is valued, and should be valued. There's room for all of us in this big tent and I just couldn't be prouder of what they've done and the message that they're spreading across the world. So I'm very humbly grateful to be a part of it, and help out as much as I can as they go on this great journey.

 

Karen Ortman  26:18

I love it. And Linda, mom, what about you?

 

Linda Strobel  26:22

You know, when I see what Grace is doing and everything that has unfolded, I could just burst with joy and thankfulness because Grace is getting a chance to change the landscape for people with disabilities. I've always said that we fear what we don't understand and if you can see someone with a disability, not only in print, but maybe like Grace does, go and give her story in front of kids; Grace comes off the page, Grace is a person instead of a disability or somebody who might be different and then we we look at people as humans first with all the same desires that each and every one of us want, no matter if it's your skin color, or what you look like, or sound like we all just want to be seen and accepted and valued. 

 

Karen Ortman  27:27

Let me ask you. If there are listeners out there who perhaps have an infant or very small child who has Down Syndrome, what advice do you have for them?

Linda Strobel  27:42

Number one, I would definitely say, don't put limitations on your child. Set expectations high, put the bar high, you're always gonna get so much more growth if you even put the bar up, and you have 60% of the bar versus putting the bar down low, and you get 20% and you and you meet the bar. We just like anybody else, we wanted Grace to be a part of society. Everybody's journey is different, but I think if you listen to the negative, that's what you're going to see. If you look for the possibilities and the gifts that you've been given, that's what you're going to see. 

 

Karen Ortman  28:33

Sure, Grace do you have a web page where people can, is there a way that listeners can look at your modeling photos if they want?

 

Linda Strobel  28:44

Well, they could find you online.

 

Grace Strobel  28:47

I know. Facebook, I know, my Instagram. 

 

Karen Ortman  28:52

Oh, you're all on social media, huh? 

 

Grace Strobel  28:54

Yeah. Oh, yeah, I do.

 

Karen Ortman  28:56

Okay, so all people would have to do is Google Grace Strobel and they'll find your beautiful modeling pictures, right? 

 

Grace Strobel  29:05

Oh, yes. 

 

Karen Ortman  29:06

Okay. Well, it has been my honor to meet all of you, and I'm so grateful that you came to talk to me on You Matter, especially you, Grace.

 

Grace Strobel  29:17

Oh, thank you. 

 

Karen Ortman  29:18

Oh, you're very welcome. 

 

Grace Strobel  29:20

I know, we're so happy

 

Linda Strobel  29:21

We are. We're just thrilled to be here and given this opportunity. Thank you for inviting us. 

 

Karen Ortman  29:27

Oh, my pleasure. Thank you to Jeff and to Linda and to my extra special guest Grace for joining me today on You Matter. And, thank you to all of our listeners for joining us for today's episode of You Matter if any information presented was triggering or disturbing, please feel free to contact the Wellness Exchange at 212-443-9999 or NYU's Department of Public Safety and their Victim Services Unit at 212-998-2222. Please share, like, and subscribe to You Matter on Apple Podcasts, Google Play, Tune in or Spotify.