The ups of Down syndrome
When Alyse Biro started her Instagram account to document her journey as the mom of a child with Down syndrome, she never imagined she’d gain nearly 92,000 followers. People come for three-year-old Flick’s adorable fashionista photos, and they stay to watch a little girl who’s just like the rest of us grow up…
October is Down Syndrome Awareness Month. Down syndrome is a genetic condition caused by having an extra copy of chromosome 21. People with Down syndrome have an intellectual disability that affects their learning, but with our support most can achieve and make valuable contributions to our society. Here’s one mother’s story…
Mere seconds after Alyse Biro heard her daughter’s first cry, she reeled in shock as her obstetrician pronounced four words that would change her life forever: “characteristics of Down syndrome”.
“It was such a crystallizing moment,” says Alyse. “It was the happiest moment of my life, and then the saddest. I’ll never forget it.”
The diagnosis came as a shock to Alyse and her husband Scott after a wonderful pregnancy. “I didn’t have any problems,” says Alyse. “I’d decided against the genetic testing because the results didn’t matter to me, but all the ultrasounds looked great. I would always ask about how the limbs, neck and head were looking, and everything was measuring fine.”
As little Felicity was ushered off the NICU, Scott followed her while Alyse stayed in the recovery room by herself. “As soon as the drugs wore off, I cried harder than I’ve ever cried in my life,” she says. “I was grieving for the child I had lost.”
For three months, Alyse cried every day. “I loved Felicity and there was never a time where I thought I didn’t want her or I didn’t feel attached to her, but I just couldn’t stop crying,” she says. “I wanted to feel better, to feel like myself again and to be a good mom. So, when Felicity was about three months old, I forced myself to stop. I realized that the extra chromosome affects every child with Down syndrome differently and I had to stop thinking the worst. I decided to allow Felicity to show me what Down syndrome was to her.”
Alyse contacted her local Down Syndrome Association to get involved. She also set up an Instagram account @flicks_on_fleek where she started documenting her journey by posting photos of Felicity captioned with her touching, heartfelt words.
“When I was struggling with the diagnosis, I kept searching online for the answer for how people went from grieving and sad to happy and OK with life,” she says. “But I couldn’t find it anywhere. So, I wanted to document how I got there so that other people could see. I was being real, I wasn’t just saying, ‘We’re fine, and everything’s beautiful and perfect, and I’m happy.’ If there was another parent in my situation, I was hoping they’d find my account and maybe it could help.”
Alyse’s account slowly gained followers, but she wasn’t focused on the numbers. “It was never about that for me,” she says. Then, one fateful day, the Facebook page Love What Matters shared her account and it exploded. She now has nearly 92,000 followers who can’t get enough of Felicity’s adorable fashionista photos and dance videos.
“I like to think people come for the pictures, and then they stay to cheer us on, share our story and watch Felicity grow up,” says Alyse.
But @flicks_on_fleek is about so much more than cute snaps. Alyse has become a vocal advocate for the rights of people with Down syndrome and she uses her Instagram page to spread the word.
“It gets me so angry how people with disabilities are treated like second-rate citizens,” she says. “I want people to include Felicity, to treat her as equal and to know that she has value in our society.”
But for real social change to happen, Alyse believes that we need to overhaul the way we think about inclusion. “It isn’t just about Felicity being able to sit in the same space as those who are typical,” she says. “It isn’t just about Jane, who’s typically abled, helping Felicity in school and everyone clapping and telling Jane she’s a good girl. How do you think Felicity will feel about that? Real inclusion is having Felicity help Jane with something — it doesn’t have to be fractions or algebra. But have Felicity help Jane, and Jane will see her as an equal. That’s enormous.”
While reactions to Alyse’s advocacy efforts have been mostly positive, a run-in with Netflix comedian Tom Segura earlier this year and subsequent threats from his fans made her wonder if she should give it all up.
“He has a Netflix special where he proposes to substitute having an extra chromosome for the word ‘retarded’,” says Alyse. “I called him out and he screenshot what I said [about taking his Netflix special down] with the caption, ‘That’d be so retarded.’ His followers found my personal Facebook page and threatened and harassed me.”
Rattled by the threats, Alyse deleted her Facebook page. “I cried a lot,” she says. “But not long after that, I saw a special with President Obama where he was talking about the civil rights movement. He said it came about because an ordinary person said, ‘That’s not right.’ He said that that’s how change happens. And boom, it just hit me. I went back on Facebook that day. I said, ‘No, I‘m not turning away from this fight. This matters.’”
Despite that little hiccup, Alyse credits social media for helping her to heal and move forward. “If it weren’t for my Instagram, I don’t know where I’d be,” she says. “Being able to talk about what I’m going through in real terms and to connect with other families has been amazing. I wouldn’t be where I am right now without the account and the people that I’ve come into contact with through it.”
As for Felicity, Alyse says she’s doing “great”. “She does have a pretty big speech delay,” Alyse explains. “Her receptive language is very high, so she understands what we’re saying, but she has trouble expressing what she wants to say. We’re thinking it’s possibly apraxia [of speech], where the brain and the mouth have a miscommunication. So, we’re working really hard on that, but other than that she’s perfect to me. She’s doing what she should be doing… for her. Some things will come quickly and others more slowly, but we’ll see as life goes on.”
In the meantime, Alyse will continue to spread the message that people with Down syndrome are just like the rest of us. “Felicity has feelings and tantrums and she thinks certain things are funny and she loves Elmo,” she says. “She’s just a kid. And she’ll be just a teenager and just an adult. She’s equal and she has worth.”
Alyse believes that parents can help their children accept and embrace kids with Down syndrome and other disabilities by supporting their curiosity and widening their horizons. “Instead of telling them not to stare, encourage them to ask questions,” she says. “Get them involved with different kinds of kids and people so that nothing is scary as they grow up.”