Different but not broken: Creating inclusion for children with down syndrome

The Means Report

AUGUSTA, Ga. (WJBF) – Today we’re going to address the topic of down syndrome. Now that is a topic that we typically like to address in October because that’s the month dedicated to Down Syndrome Awareness, just as it is domestic violence and breast cancer, but as you know Down syndrome – and those other topics for that matter – are things that we can and should talk about year round. But we’re going to really take a look at it today we have an expert on the subject who’s going to talk about not only the condition itself, but the need for more acceptance and inclusion in our world for people in their families who, for whom Down syndrome is a part of their lives. And we are going to do all of that with a very familiar face.

  • WJBF NewsChannel six at six.
  • New name for Augusta’s new you I’m Brad Means and I’m Jillian Benfield and tonight for Jini Montgomery.
  • Jillian Benfield gives you her own personal newborn survival guide in today’s Kid Connection.
  • So Kid Connection today is a little bit personal, when you get pregnant the first thing people are going to do is give you advice. And I found that the best advice came from new moms. So we are in my daughter, Violet’s nursery today, and I’m here to give you some of my new mom advice that has really helped us out the first couple of weeks of her life.
  • As I said, this is my last day and we’ve so enjoyed our time here. Of course, of course we gonna buzz right now.
  • We’ve got a great tight shot. Hey darling. We have enjoyed having you on our team so much. You’ve been such an asset to NewsChannel 6. We are going to miss you, but we’re so excited for this new chapter in your life.
  • Thank you, thank you so much.
  • Best of luck you’re an awesome girl and we’ll love and miss you. Get that shh thing, get that shush thing.
  • I would, but she doesn’t have the swaddle. You’ve got to have it all.

Brad Means: Oh my gosh. I remember that day. I also remember back when I used to weigh that little, that was a pleasant memory to see on the screen, Marlena thanks for putting that together. Jillian Benfield is our special guest today we’re going to catch up with her. We’re going to take a look at all of her efforts, when it comes to Down syndrome including the message for her book that you need to look for down the road all toward her goal of creating a more inclusive environment. She is yes a television reporter, anchor, author blogger, and our friend Jillian Benfield. Jillian thank you for coming back with us, my goodness gracious that was Violet. She was a newborn basically in that video, she’s eight now?

Jillian Benfield: I can’t believe that, yeah she’s eight years old, and I had two more since that aired and it’s just, wow, you guys really took me back there.

Brad Means: Well, we miss you so much and, I know the viewers do as well. You were such a key part of the NewsChannel 6 family. What have you been doing in this brief decade give or take, since we last saw each other? How’s Andy, Andy your husband was a dental student, serving this nation in the air force, is, is, is any of that still going on?

Jillian Benfield: Yeah, so I can kind of like you been on a little secret, cause I think this is going to air after I announced this, but Andy, so since I have left you guys, we have lived in five different states together while he has done active duty service. We lived in Nevada, New Mexico, Arizona, Texas, and now here in Colorado which it’s forecasted snow today.

Brad Means: Wow.

Jillian Benfield: But he is leaving active duty service next month kind of unexpectedly it’s something that he wanted. And so he’s going to transfer his commitment to the reserves, and we are going to finally settle down in…. on the east coast of Central Florida, which is very close to where I grew up, so.

Brad Means: Oh my goodness. How’s your family?

Jillian Benfield: Yeah.

Brad Means: Is your family beside themselves?

Jillian Benfield: I hope so. I’m not really sure. We bought a fixer-upper, and you know how supply chains are right now, everything with COVID. And so we will be living with my parents for a bit. They say they’re excited I don’t know how they’re going to feel like a month from now. You’ll have to check back in with me, but we’re really excited just to we’ve done the military thing. It’s been wonderful, have had so many experiences we wouldn’t have had otherwise. And, and now it’s starting to settle down.

Brad Means: Well, tell Andy we certainly appreciate his continued service to this nation. And we wish you all the best, especially with a household full of children, Violet, who was the baby in that video, we have Anderson the middle child, and we have Preston. Are they all growing up and doing okay for all intents and purposes?

Jillian Benfield: They are all growing up and doing okay. Yep we got a third grader, a kindergartner, and a preschooler, and I feel like we’re just now like you remember Brad this you could seem like little we’re coming, just starting to come of the parenting trenches. You know, like we’re like our Texas years. I don’t even remember, even though that was our last date. And it was just because I was dripping in babies.

Brad Means: Oh yeah.

Jillian Benfield: And now I feel like we’re coming up for air a little bit.

Brad Means: No, I do remember that and it is a wonderful feeling. Okay. I’m a middle child, Jillian, and so my heart goes out to your middle child Anderson. We are special people, us, middle children, and we middle children, we middle children, us middle children, anyway, we are special people. And I want the viewers to know that your middle child was really the reason that you decided to kind of dedicate your life to what it’s dedicated to right now. And I just want you to kind of tell me what Anderson did when it came to that and how he kind of lit that spark for you.

Jillian Benfield: Yeah. You know, I was actually listening to a podcast recently and I can’t remember the name of this pastor who said this, but he said something along the lines of, you know, your gifts, your talents, they remain the same. But your purpose is dynamic, and how we’re supposed to kind of pay attention to our lives and use those gifts that we’ve had all along and channel them into new ways when it comes to… So for me, that looked like, you know, I did a little bit of what you did. I have always been a writer, I’ve always been a speaker performer type. And then Anderson was born with Down syndrome, and everything kind of changed, I thought about going back to TV news I even did some interviews while we were in Arizona and I just kind of knew it wasn’t in the cards for me anymore with all of his needs. And I just kind of felt like my heart wasn’t wasn’t there. And so all of those gifts or talents that I had, I just kind of transferred over into becoming a writer who writes about my primary message is how the unexpected gives us the opportunities to transform into who we’re meant to be. And for me, a lot of that unexpected journey has been having a child with Down syndrome. And so that’s I, so I talked about that and I also talk about what it’s like to parent a child with Down syndrome, the joys and challenges that come with that and, and try to permit, promote not just awareness, but acceptance. And that’s, that’s what I’m trying to do through my website and my social media channels. And a book that will come out will be published in 2023.

Brad Means: Well, we’re going to talk about your efforts to promote awareness, inclusion, acceptance in our next segment. And as Jillian mentioned, there are several ways that you can keep tabs on what she’s doing and how you can hear and read her powerful words, you’ll find them extremely helpful in your life, I’m certain that that information will be on your screen shortly. But when we come back our conversation about Down syndrome with NewsChannel 6 forever’s Jillian Benfield when The Means Report continues.

Part 2

Brad Means: Welcome back to The Means Report everybody our conversation with Jillian Benfield continues about Down syndrome and her goal to keep it in the spotlight and to promote more inclusion and awareness when it comes to those with Down syndrome and their families. Jillian do you remember a specific time in Anderson’s life or in your Down syndrome experience where you said, okay, this is no longer going to be something that’s private, that’s our family’s issue. I’m going to put this in the public spotlight and I’m going to try to help others or did it just occur gradually?

Jillian Benfield: I think it was more of a gradual thing. I announced that we were pregnant with a child with Down syndrome and at the time I was very devastated by that fact, and I think I was devastated because I didn’t know what I didn’t know. I think I had a lot of underlying ableism which is just the idea that people with disabilities are broken and less than somehow, and maybe that their lives are sad when that’s not the case. And I didn’t know that I had that. And so I did kind of put it out there early, but the toll really started shifting probably about six months after Anderson was born. And I started educating myself more and going to different advocacy classes, and learning from disabled people. And yeah, so it really, it started from before birth, but it didn’t really take shape until after he was born.

Brad Means: How early in Anderson’s life, and I suspect you’re speaking for other parents of Down syndrome children when you answer this question, but how soon in his life did you notice children or society start to treat him or you all differently?

Jillian Benfield: Hmm. I don’t really notice. That’s a hard question to, to ask. I feel like our it’s hard answer, but I feel that I haven’t really seen Anderson be discriminated against yet. I think we’ve been incredibly fortunate to have people in his life that had high expectations of him. You know, I, my worst fear as a parent is that people are going to see a Down syndrome and assume outdated stereotypes about Down syndrome are true and therefore have low expectations. So far in his schooling, especially where we are in Colorado. People have high expectations of him and they expect him to learn and they he’s included in the general education classroom, along with all the other kindergartners. And he, the only time he leaves is for speech therapy during school. And that’s it. And so I will say we’re moving to Florida to a less inclusive environment. And, you know, it’s sad that I, we had to pick our house based on who had the best reputation for inclusion, right? Because if we can’t just move wherever we want, I mean, we could, but if we’re moving into an environment that is going to have those low of expectations of Anderson and that is going to say, you’re different so you go here. Well that’s not going to work out for our family, that’s not gonna work out for Anderson. And I’m going to be the kind of mom that takes that school to court and I don’t want that. So…

Brad Means: But it’s good. It’s good. That you’re that kind of advocate. Where does it start for the rest of us? Does it start with knocking on the school house door or the school board headquarters and saying, no, no, no, your school is set up wrong. There are lots of Anderson’s out there. Here’s what you need to do. Do you make change that way?

Jillian Benfield: Yeah. I think the first thing is really listening to voices out there, especially disabled voices and learning from them. And then, you know, for right now I am Anderson’s voice for the time being. So parents of kids with Down syndrome and other disabilities, and you’re going to see what we want and what disabled people want, what my son wants and what do we all want. We want to belong, right? How is he going to belong in a society that automatically segregates him? You know, I, I feel like we still operate off of a separate but equal mentality. It’s just people don’t realize it. You know, I, I was, we were recently at Anderson’s IEP, which is his annual education plan meeting. And at the end of the meeting, our advocate said to us, said to the whole table, she’s like, you know, my daughter who’s in high school told me that she only sees people with disabilities, kids with disabilities when she has a hall pass. And I just looked at my husband and our jaws dropped because that is literally a line in the book that I’m writing. But that was the only time I ever saw people with disabilities. And so because of that, you automatically assume there are othered, they are othered, they’re being othered. And so I guess what got to go back to your question is, yeah, I think I need parent allies. You know, I need parents who, when they see Anderson and the classroom, and they’re not used that because we’re going to an environment that’s not, that’s not super common to not be afraid of that. And to embrace that because Anderson has much to learn from their kids, but he has much to teach their kids as well right? Because we are raising him. We should want to be a society that, there is no separation, right? We should all be living together, working together as one people. And how are we going to do that? If it doesn’t start in school.

Brad Means: And you’re not anti-special education. You’re not trying to say that those doors should be closed. Are you? You’re just saying that, you know, there’s a time and place for that, but there’s also a big time, time and place for mainstream interaction for those with Down syndrome.

Jillian Benfield: Yeah, so the law is states that kids with who are in special education are general education students first. That’s what the law states and that’s what most people don’t understand. So yes, Anderson is a special education student. He gets special education services, but those services should be brought to the general education classroom. Now, I am not saying that every kid with a disability deserves or not deserves is wrong word, but should be in a general education a hundred percent of the time. That’s not what I’m saying. It should be an individualized plan, but we should always treat our students as general education students first and bring the supports to them as the law states IVEA instead of the other way around. And unfortunately it’s just, it’s not happening, there’s progress, but it’s very slow. Only 18% of student high school students with intellectual disabilities are included in the general education classroom. And that should be appalling to not just parents like me, who have a student with an intellectual disability, but to all of us.

Brad Means: Jillian, are you finding encouragement and support from your fellow parents who are in similar situations? Or do you find that maybe an older parent or a parent with an older Down syndrome child might say, “Hey, Jillian, appreciate you. But the battle is too large. It’s too uphill. Don’t waste all your energy.”

Jillian Benfield: I mean, I certainly have encountered people like that, but for the most people I choose to surround myself with people who believe like I do, who believe that my kid has every has, this is a civil rights issue and Anderson deserves to have the civil human rights just as everybody else. And so I surround my people, myself with people like that. And, you know, I write on the internet, so I’m going to get a lot of pushback I’m used to it. And I don’t care because this is a issue worth fighting for.

Brad Means: No, it is, and I know you personally, and I believe that you have more than what it takes to see this through and to see success and, and celebration at the end of the journey. How are you not constantly weary though? How do you deal with the red tape and the closed doors and the setbacks and still recharge and go at it again the next day?

Jillian Benfield: I mean, honestly, I mean, my faith has a lot to do with that.

Brad Means: Sure.

Jillian Benfield: I think, you know, I think my faith compels me to want to care about justice for the marginalized. And so that is a lot of fuel for me. I had somebody interview me recently about self-care as a parent of a child with a disability. And so I make sure I have really good like, mind, body, soul habits every day. And I also use the resources that are available to me, you know, through the military, I get 40 hours of respite care and I use almost all of them.

Brad Means: Yeah good good.

Jillian Benfield: You know, it’s a combination of things, but at the end of the day, I, you know, I want people to know that raising Anderson is not a burden. It is a blessing, that does not mean it’s all sunshine and rainbows. I am not saying that I’m saying that it’s worth it and he’s worth it. And his peers are worth it. And I hope that at the end of my life, I can look back and be proud of hopefully just moving that needle a little bit forward, even if it’s just within our local district.

Brad Means: What can we say to our children about how to treat and interact with those with Down syndrome, how to talk to them? I want everyone to buy into what you’re saying and to be proponent of inclusion and acceptance. How do we do that when we walked down the halls in school tomorrow?

Jillian Benfield: Yeah. You know, I think what’s so interesting. Brad is watching kids with Anderson, the kids that have been in these inclusive environments. This is just what they know, Anderson’s just another kid. I opened up his backpack yesterday and there were two pictures that little girls had drawn for him and, you know, sit at home for him. So, you know, my hope is that if we start this young, there really is no learning curve. Cause it just is, it just is. It’s not, something’s wrong with him. It’s just, he’s different and that’s okay for kids that are not in this environment. It’s just, I would say teaching your kids, that there are all sorts of forms of communication. And some people talk with lots of words and some people talk with a little bit of words and some gestures and hand gestures and maybe a talking device. And no one way of communication is better. No one way of being of living is better. And we just meet people where they are. And it’s not like I, what I don’t want is to say, tell our children, you know, that something’s wrong with that kid. So you need to be extra nice. Cause that’s, that’s not gonna get us anywhere because nothing’s wrong with Anderson. He’s just different. And so I think it’s, it’s really important that we teach our kids that yes, he’s different and you should include him, but you should also know that he has much to give you. It’s not just a one-sided thing. There’s so much that people with disabilities can teach us and enrich our lives. Just as much as we can enrich theirs.

Brad Means: Well I hope people just rewind and play that answer over and over again. It’s so extremely helpful. Jillian I messed up and ran out of time. I know that you signed a book deal. I am so happy for you, but there’s plenty of time to address that later. I just wanted to congratulate you on your book deal.

Jillian Benfield: Thank you.

Brad Means: Will you cover a lot of the themes we talked about?

Jillian Benfield: Yes. It will be a lot of the things we talked about. It’s about, it’s not just for parents of kids with disabilities, it’s for anybody who’s undergone an unexpected thing in their life and the benefits that we can find from those unexpected experiences. So yeah, more to come.

Brad Means: Well, very happy for you and very grateful to you and your entire family. Jillian please give everybody our love and thanks for being here today.

Jillian Benfield: Thank you so much for having me. We miss Augusta and we love you all. And I just appreciate your time.

Brad Means: That’s great. Jillian Benfield talking about Down syndrome. Excellent information from her today, different but not broken, never, ever broken. The Means Report back in a moment.

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Brad Means

The Means Report first aired in January of 2009 offering coverage that you cannot get from a daily newscast. Forget about quick soundbytes -- we deliver an in-depth perspective on the biggest stories. If they are making news on the local or national level, you will find them on the set of The Means Report. Hosted by WJBF NewsChannel 6 anchor, Brad Means, The Means Report covers the topics impacting your life, your town, your state, and your future.