For many Americans, 2020 has been a living hell: challenging is an understatement. Literally and figuratively, breathing has been challenging for millions. Imagine the added strain of parenting.
The Simon Family is the quintessential example of togetherness; they do all of the things society dictates that a family should do. The four of them spend time together, work hard, smile and take photos we all want to share. There’s just one “difference”.
Eli was born with a diagnosis of Down Syndrome.
Eli was also born Black.
Many may ask “what does race have to do with this?” Black children with a diagnosis of Down Syndrome have significantly shorter life spans when compared to white children with Down Syndrome1.
The Institute for Anti-Racism in Medicine (IAM) decided to sit down with the Simon Family, having the sole purpose of elevating their experience, their voice, and further understanding how the Black community can grow in terms of equity and inclusion for humans with Down Syndrome.
Editor’s Note: This conversation has been abridged and edited for clarity.
IAM: So there’s a pandemic, then there’s tape after tape, after tape of people who look very similar to us, literally being murdered on TV, then there’s a change in economics, right? Lastly, there’s this massive hurricane, Hurricane Laura, that hits our hometown of Lake Charles, Louisiana. How are you all doing?
Theresa and DeWayne Simon: I think we’re doing well. You know, overall we’re doing as best as we can in this situation… We recovered from [the] hurricane pretty well. I’m still a little fearful of all things COVID-related, just because of Eli, he does have Down Syndrome, but in addition to that, he also has a congenital heart defect that was actually repaired in November, 2019. [DeWayne]… I mean, we have great, great support systems and we have a great support system in each other.
A lot of family support, and like she said, supporting one another… it’s been very stressful though, fighting with insurance companies on both ends, you know, trying to fix things and restore not only our home, but help our parents and our friends. We got a little less damage than a lot of people did, so we’ve been really trying to… lend our hand. Overall, you know, we were diligent and we worked together and good as a team. So, it’s been pretty good, you know?
IAM: Half the battle is having the right team around you, my wife commonly says ‘teamwork makes the dream work’. You all are married and have two children. Tell me about the Simon family.
TDS: I’m Theresa Simon, I am 34 years old. For many years I worked as a respiratory therapist and then I transitioned into sleep technology. Actually this year, after the hurricane, I was laid off. So now I have the greatest role ever, and I am a stay-at-home mom until 2021; but, we’ve been married for eight years. We have two kids, an 11 year-old daughter, London and Eli, who is 4 years old.
We’re hardworking, very active people. I can hear my son hollering in the other room right now, but, yeah, just your typical family trying to make a good living. God fearing people, believe in prayer and, and doing things right the right way.
He’s expressive, the very best he can, loves sports already. He looks at the TV and tries to emulate everything. I’m a Cowboys fan, [so he’ll] follow in those footsteps. Don’t have much of a choice.
IAM: I’ve read a lot about how important language is, specifically with children who are neuro-atypical, as opposed to neuro-typical children. Can you tell me how important it is to have that delicacy with language, specifically for your child and children?
TDS: I think it’s important. You don’t want to say anything that could deter their development or their confidence. I’m still learning. I don’t know all the latest terminology to use and he’s still pretty young, this is still kind of new to us.
TDS: My wife corrects me sometimes on some of the things that I say and I’m both open and willing to learn. I think that’s what he’s [Eli] done for me is to make me more conscious and be willing to change some of the way I see things that I’m normally used to saying, you know, are referring to certain things with certain language.
IAM: Are there things that you had to unlearn from the way you were parented to better care for your neuro-atypical child?
TDS: We have an older child and we had a certain way that we parented her, [at that time] it was definitely ‘what I say goes’. You know, you can ask questions, but watch how you’re asking these questions. I think we had to basically just kind of let all that go, and realize that the first time Eli may not understand what we were trying to get across to him.
I think one of the things that I really want to convey is that there is a difference between his physical age and his developmental age. So yes, he is 4 years old, but mentally, he’s probably two and a half-ish. So, although his body is physically growing and he is developing more and more, we do have to take into account that he may not understand everything that you would tell a typical 4 year old to do.
IAM: So what do you all consciously and intentionally doing to ensure that London gets adequate attention and that she isn’t burned out?
TDS: It’s a delicate balance you’ve got to have and constantly be conscious of because you know, it’s natural to lean towards the younger one because you feel like they need you more. So, we just try to make sure when it’s about London, it’s about London. If she’s in her room and Eli just wants to be in there, I make him get up sometimes, when I can tell she don’t want to be bothered, you know?
IAM: It’s been a tough year for a lot of people, but especially the Black community. So why does race need to be a part of this conversation? How do you think that being Black has shaped your family?
TDS: For Eli, I look at it as just one more potential thing to lead to prejudice, people assuming things about him and what he can do and what he can’t do. Just one more proverbial hurdle in his life, you know?
We are in his life. We care about him. He’s not somebody that we just pass it off to other people to get rid of them. We are very involved and very conscious of the struggles and the obstacles he’s going to have. Being black in this country, you’re always gonna have people think certain things about you, so you have to fight against that. We’re conscious about that and know that, we have to just continuously work, to overcome those obstacles.
IAM: Can we talk about Eli’s diagnosis? What was the day like when you all found out? On top of that, did you all have the exact same attitudes toward that news?
TDS: Elijah was a birth diagnosis. We had no idea that he had Down Syndrome until we delivered him. I went to all of the doctor visits, I did all of the ultrasounds and nothing was detected. The day that we had Eli, I was induced. Our families were already planning to be there because they knew that I was being induced. Once I delivered him, I noticed something was off just by how the healthcare workers were handling him. They were very standoffish. It was like no skin-to-skin contact. I’m like something is off here, but I’m trying to be that strong woman. I don’t want to alert the room. I just want to kind of let the process play itself out. The neonatologist comes to me, and I will never forget his words. He was like, ‘Oh, your child has Down Syndrome. But I’ve been wrong before.” The way he delivered the news to us actually affected my perception at the time. It went from like, “Oh, I just delivered a baby to, Oh my God. Like, what in the world?”
But initially, to answer your question, I handled it very tough. I think it’s important to give yourself space.
IAM: Speaking of that, who in your mind would be the most important people who need to hear stories like this?
TDS: I have two different answers for this. People who don’t have an atypical child needs to listen to this. They’ll get a better understanding of what we go through while we’re raising our child. I think that would be beneficial for them, but I also think that it will be beneficial for a new parent of a child with a disability to hear this as well, because I think what tends to happen, you, you feel guilty.
I want people to see him and just like I say about black people, like when people say, ‘Oh, I don’t see color.’ No! I want you to see my color and be okay with it. Same thing with him. I don’t need you to act like he doesn’t look different or his development may be delayed.
That’s fine, but be okay with it, you know, embrace it.
I think that’s a good, important lesson for people.