I watched the first six episodes of Born This Way with excitement. In Season 1, there were so many great moments, teachable moments, moments that made me laugh, cry, and feel grateful to be part of this amazing community that we belong to.
Here’s my favorite 15 – some of them are personal, pieces that touched me as a mom. Some of them are about the advocacy and awareness that the show offers its viewers. Some, qualify as both.
For new parents
As episode one closes, you can hear Sandra McElwee say why this show is important to her, and many other advocates:
“A woman who just got a prenatal diagnosis of Down syndrome could watch this and see, Oh my gosh! There’s people that date, my son can get married, my child one day will have a job, will have meaningful relationships, and will have an amazing life.”
Honesty / No Filter
One of my favorite things about my own son is his, sometimes brutal, honesty. Sean displays the same tendency to speak his mind, no matter what the consequences. During an interview in Episode 2, he tells the interviewer:
“Just so you know, sometimes I make mistakes.”
They’re not overgrown children.
From the very beginning of the show, we see that the cast members don’t fit the “eternal children” stereotype. In the opening sequence – Steven and Sean are in a bar, having a beer. Also in episode one, Rachel says she wants to see Ted 2. When someone asks if she can watch that one because it’s “rated double R” she replies,
“Well, I’m over 30.”
Change/Transition is Difficult!
One of the “truths” that the show communicates to viewers is the fact that transition is difficult for many people with Down syndrome. In episode 2, we see how upset Sean gets when his parents talk about moving.
“It’s not gonna happen!” he says.
In episode 6 we also see how Elena struggles with change when she doesn’t want to visit her parents’ new home.
One of the things that is a source of concern in the disability community is underemployment. Many of the adults in the show hold jobs or volunteer in the community. Sean lands a job at Home Depot. Steven has two jobs, one at the Angels stadium, and one at a grocery store. John volunteers at the Lucky Puppy and Megan has started her own clothing line, Megology. Rachel beams when she shows us her paycheck. The creators of the show did a good job choosing cast members who epitomize the possibilities.
There were so many moments during the season that the cast made us laugh. In episode 6 alone:
Elena tells John:
“I don’t eat broccoli because it tastes like a tree.”
Angel whispers to Christina as they leave dance class:
“I got a wedgie.”
And when Megan hears that Angel is giving Christina a promise ring she calls her boyfriend out:
“Where’s my ring?
There’s so many funny moments, it’s impossible to list them all. What’s important is that viewers got to see that these young adults aren’t “suffering” with Down syndrome. They’re hilarious and for a few brief moments, the world gets to see just how much fun our children can be.
Episode 5: Rachel’s face when she saw Adam Lambert was nothing short of amazing. As a mom, I cried happy tears. When she stood up and walked toward the stage, it was as if we were watching chains fall from her feet. With all the criticism of reality television, the scripted, “not-really-real” accusations, this was a sincere, moment, that you can’t recreate or plan. There was no way Laurie and Gary could know what Rachel would do in that situation. We all could see, and experience the pure joy of that moment. I for one am grateful the cameras were there.
Episode 6: Angel and Christina’s big moment! Another happy tears moment. How could you watch the two of them profess their love for each other and not be moved?
Christina’s parents are so fantastic! I love how they support their daughter to be all she can be. One of my favorite quotes from Mariano was in episode 2: “What’s Normal?”
“Sometimes people ask me “So what is Christina’s mental age.” Okay, that’s okay. My answer is, it depends. Her mental age to tell time, it’s about five. Comprehension, eight. Her mental age to have a relationship with a boy, she’s like a forty-year-old woman. You know, she is committed, and in a life-long relationship.”
We all get the question. His response is the best I’ve ever heard.
Support is Essential
Another great thing about the show is that we get to see how the cast members are supported by different staff and community services.
Employees at Leaps and Boundz help the cast learn social skills. Sean and Steven both have job coaches that help them get and keep their jobs. Elena has a “supported day specialist” and both John and Elena take classes at the Performing Arts Studio West.
While many parents have talked about how well the cast members are doing, it’s important to acknowledge the level of support they receive. Join us at the 321 eConference in March where we’ll talk more about these services and how to get them for your own child.
The Importance of Planning
Episode 4: Love and Chromosomes
The parents have a meeting where future planning is discussed. Each family is in a different stage of planning. Kris gets emotional about planning as a single mom. Joyce is nudged into talking with John’s sisters about where John would live if something happens to their parents.
As an advocate and a community facilitator, this is a huge issue. We hear stories of parents pushed into desperate acts when they are faced with terminal illness. These tragedies can be avoided with planning. It’s difficult, but crucial.
Self-advocates teaching people about Down syndrome
Episode 5 – Fears and Gears
“People with Down syndrome have less muscle tone and balance issues which is why it’s harder for me to learn to ride a bike. I found a bike camp that is specifically designed to teach people like me to ride a bike, and I’m very excited about it!”
Sean and Megan: The two self-advocates speak to new parents at the Down Syndrome Association of Orange County about possibilities for their children. The motto? Dream big and don’t limit me!
The Single Parent
Of all the parents on the show, I most identify with Kris. Her story, about being a single parent, is one that many of us can relate to.
In episode 1: “Up Syndrome” her candid reaction speaks to how our identity gets irreversibly linked with who we are as parents.
Kris: “I’m Megan’s Mom.”
Producer: “I imagine Megan’s Mom has a name.”
Kris:“I’m Megan’s Mom and my name is Kris. When she was born, I became Megan’s mom and that the identity that I’ve had since she was born.”
In episode 4: “Love and Chromosomes” the group talks about planning for the future.
Kris: “For Megan, it’s just the two of us. Her support system will be more of the system which scares me just a little bit.” “Megan has a couple of siblings, but they don’t know her you know. She doesn’t even know her dad. So when it’s time for me to make a decision about who’s going to help her financially, who’s going to help her make decisions, who’s going to care for her and love her? Um, I don’t know. Just the thought of her being alone is really sad.”
NDSC Phoenix – I Was There!
This is the moment that I came closest to being on the show. I was actually walking toward Sean and Sandra as they walked out toward the pool. I steered clear of the camera, but it was close. 😀
Sean and Devon meet each other. It was one of those moments when people we’ve met online, in our little community within a community, got to meet in person for the first time – Priceless!
Parent –to –parent Support
A recurring theme throughout the show is how parents can support and teach each other.
In episode 5, Kris and Laurie talk about independence and romantic relationships.
“When I meet other mom’s of kids that have Down syndrome, I feel like you’re my people.”
In a bonus clip from Episode 2: “What’s Normal” – Hiromi and Sandra have lunch together and discuss supporting their children when they move out.
Kris sums up how we feel and why we do what we do here on The Road in one of my favorite lines of the whole season :
“You know there’s a secret club that we all belong to and there’s some connection that we have that is unspoken.”
My number one favorite moment?
Every moment John Tucker and/or his parents, Joyce and John Sr. , were on the screen!
From the minute I saw JT in the commercials all I could think was “YES!! Maybe John’s family can help us get the word out!”
Once the show started, I fell in love with him, and his family!
From episode 1: “Up syndrome”
“The doctors asked her if she wanted to have a abortion of me.”
“Even though I’m Down syndrome it didn’t really matter because my mother she said no. I’m gonna keep this child. This is my son we’re actually talking about. She sacrificed and she kept me. I could be out there dead. Your parents had gave birth to you. They wanted you as their own child. They love you. They care for you and everything you have now is very special. I’m here. I’m alive. I’m human. And that’s what we need to know. We’re all humans. We have to like, just, stick together, and stay together, and be the person that we are cause that’s what God made us to be.”
“I’m here, I’m alive, I’m human.”
Be still my advocate heart! He is F-A-B-U-L-O-U-S!!
And then there’s Joyce, Episode 5:
“I was in denial. All the sudden you slap yourself. What are you doing? Get on board. Find out what you have to do. Go through step 1, 2, 3, 4, 5 and find out what you need to do for your son. Once I did that and I went through what I needed to do, everything fell into place.”
She is an inspiration.
Go JT! #BornThisWay “They’d see the talent” “I’m thankful that God gave me the chance to be part of his life.” THE BEST QUOTE! EVER
— Stephanie Holland (@walkersvillemom) January 13, 2016
As I ‘live tweeted’ each episode I said a little “Thank you” every time someone of color chimed in. You see, we’re in the middle of a battle here on The Road. A battle for awareness, and against apathy. A battle that could literally mean life or death for many in our community, including my son and JT. If the Tuckers can bring more soldiers into our ranks to fight that battle, I’ll be eternally grateful.
The battle is about health disparities that exist in our community. Researchers have found that people of color who have Down syndrome are dying much younger than their White peers.
Dr. Michael Harpold, Chief Scientific Officer of LuMind Research Down Syndrome Foundation – a leader in Down syndrome research tells us:
“The dramatic differences in life expectancy and childhood survival rates for individuals with Down syndrome among different races and ethnicities in the US, as documented in the various professional research studies, very sadly lacks the wide attention so importantly deserved. These appalling differences need to be recognized and communicated by all of us together with advocacy for more in depth research studies to understand and address the underlying reasons.”
We desperately need more research. For that to happen, we need more people to tell our national organizations and the research community how important it is to us.
Season one of Born This Way has brought so much awareness already. I can’t wait for season two!