Dad Responds to Hurtful Observation About His Son With Down Syndrome

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Rick Smith, father and creator of the popular Down syndrome awareness blog “Noah’s Dad,” recently shared his thoughts on Facebook after a child made an unkind remark about his son.

Noah, who will turn 5 this December, was diagnosed with Down syndrome shortly after he was born. Smith has documented his family’s triumphs and struggles over the years on his blog, and though he revealed he was initially sad to hear what the child said about Noah, he was able to find a positive take on the situation.

On Oct. 6, Smith posted the photo below of his son and wrote on the “Noah’s Dad” Facebook page:

Today when I dropped off Noah at school on my way to work a little kid came up to us and said ‘His face looks silly.’ I don’t fault kids because I know kids don’t mean anything hurtful by it, they are just making an observation. It did, however, make me feel sad for a brief moment as I thought about all of the things people are going about about Noah his entire life. But then I thought about how much of a gift Noah is to our family, and for all the great friends we have that love Noah and don’t see a ‘silly face’ but a little boy full of worth and purpose.

 

Today when I dropped off Noah at school on my way to work a little kid came up to us and said “His face looks silly.”I…

Posted by NoahsDad.com on Tuesday, October 6, 2015

In just two days, more than 30,000 people liked Smith’s post, and more than 2,000 shared it on Facebook. Many showed support by sharing their own photos of loved ones with special needs.

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Why the Special Needs Community Is Rallying to Save This Haunted House

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Nick Thomas has put on an elaborate Halloween show in his neighborhood in Naperville, Illinois, for nearly two decades. Last year, almost 8,000 people visited his display, and YouTube videos of the show go viral almost annually. But this year a new set of rules established by the Ashbury Homeowners Association board has caused Thomas to cancel the festivities, according to the Chicago Tribune.

Many locals are upset about the decision to restrict Thomas’ Halloween display, as he uses the festivities to help collect donations for Gigi’s Playhouse, a Down syndrome awareness organization. Last year Thomas raised $6,500 for the group.

Thomas’ godson, who has Down syndrome works at Hug and Mugs, a local business established in conjunction with Gigi’s Playhouse.

One of Thomas’ neighbors, Lara Suleiman, whose daughter also has the genetic condition, told The Mighty in an email that her family is upset about the decision to pull the plug on Thomas’ annual celebration.

“Some neighbors issued complaints and now his efforts have been limited, if not thwarted,” Suleiman wrote to The Mighty.

In an October newsletter, the Ashbury Homeowners Association board noted that their new ”Holiday Decorations Rule” limits residents’ decorations to 50 percent of their yard, excluding lights. Thomas’ display generally includes around 2,000 pieces with lights and synchronized music.

“I am disappointed,” Thomas told the Chicago Tribune. “For a lot of people, the house has become a tradition and it is something people look forward to… I do this for the kids; this is not about me. I do this so that people can come and forget about their problems and have a good time.”

In an interview with the Chicago Tribune last year, neighbor Jim Jandick said, “[While] I mind the thousands of cars — and I do mean thousands of cars — it may be a minor inconvenience for a month, but then you see all the smiling faces… I see one mother and her special needs son come here every day. Every single day.”

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Girl With Down Syndrome and Cancer Has Priceless Reaction to Portrait of Herself

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On October 1 Rhode Island-based photographer Laura Kilgus hosted a gallery show to bring her community together for Down Syndrome Awareness Month, and not surprisingly, it was a smash success.

Kilgus told The Mighty in an email that nearly 200 people showed up to the event, and it was a “happy tears” kind of night. She added that the kids’ reactions to their own portraits were priceless, but she was especially moved by 5-year-old Celia, with whom she’s done a number of portrait sessions over the years. Celia is currently undergoing treatment for cancer.

Image courtesy of Laura Kilgus/9ten Photography

“Celia’s smile was so huge when she looked at the photos of her and her sister, Ava,” Kilgus told The Mighty. “She pointed and knew exactly who that was. She also pointed and smiled at the photo below hers of her friends. She said, ‘That’s Ryan! That’s Logan!’ Seeing her light up with that same happiness showcased in that image was something I will never forget. It was really a special moment to witness. I can’t imagine what that must have been like for her.”

Kilgus said Celia was playing with other children in the hall and “even doing some cartwheels, Celia style!”

Image courtesy of Laura Kilgus/9ten Photography

Celia’s mom, Katie Furtado, said the portraits of her daughters is giving them hope for the future.

“It reminds me of a different time, an easier time,” she told The Mighty in an email. “It is a wonderful memory, exactly what a picture is supposed to be, I guess. It was before Celia was diagnosed with cancer, before she lost her hair and before she became too weak to walk. We will get back there, she will walk again and run through the park again, but until that day, we have this beautiful memory and nothing can replace that.”

Check out more of Laura Kilgus’ photographer on her website, 9ten Photography.

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Portrait Series of Kids With Down Syndrome Spreads Contagious Joy

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For the last four years, Rhode Island-based photographer Laura Kilgus has been passionate about helping the Down syndrome community in any way she can.

After reaching out to Claudia Lowe, executive director at the Down Syndrome Society of Rhode Island (DSSRI), Kilgus, 29, has offered complimentary photo services to a number of families involved in the organization through her business 9ten Photography.

On Thursday, she’ll host a gallery show of the portraits to kick off Down Syndrome Awareness Month. The event, which will be held at the Warwick Public Library tonight, will highlight some of these incredible portrait sessions. Kilgus told The Mighty in an e-mail that she’s both excited and nervous, but she can’t wait to see the families’ reactions to the show.

Laura Kilgus/9ten Photography
Laura Kilgus/9ten Photography
Laura Kilgus/9ten Photography
Laura Kilgus/9ten Photography

“I want this to be a special night for them to see themselves, and their personalities showcased in this way,” she told The Mighty. “Experiencing the contagious joy of these children and how loved they are by their parents and siblings has been the best part of this whole experience.”

Laura Kilgus/9ten Photography
Laura Kilgus/9ten Photography
Laura Kilgus/9ten Photography
Laura Kilgus/9ten Photography
Laura Kilgus/9ten Photography

Kilgus’ 5-year-old nephew Tommy (pictured below), has Down syndrome; he’s the main reason she decided to get more involved in raising awareness for the genetic condition.

Image courtesy of Laura Kilgus

Of course, as the years have gone by, a few other kids have earned a special place in her heart. After shooting portraits of sisters Celia and Ava, Kilgus became quite attached to the little girls, particularly Celia (pictured below), who was also diagnosed with cancer this past spring.

Laura Kilgus/9ten Photography
Laura Kilgus/9ten Photography
Laura Kilgus/9ten Photography

“The last few months have been very difficult for the family, who have spent a ton of time in and out of Hasbro Children’s Hospital in Providence,” Kilgus told The Mighty. “I’m so happy to be able to feature Celia in this way at the photo gallery as she has really been a beautiful little person in my life. She’s an amazing little girl. It has been inspiring to meet and spend time with such an incredible, hope-filled family.”

Laura Kilgus/9ten Photography
Laura Kilgus/9ten Photography

Lowe, who has a daughter with Down syndrome, chatted about the power of Kilgus’ portrait sessions with local website Warwick Online.

Her photos really capture these kids,” Lowe told the outlet. “They say a picture says 1,000 words, and with these pictures you get a sense of these who these kids really are. The unconditional love that is unique to these families and that’s something these photos capture.”

Laura Kilgus/9ten Photography
Lizzie
Laura Kilgus/9ten Photography
Laura Kilgus/9ten Photography
Laura Kilgus/9ten Photograph

Be sure to visit the 9ten Photography website and Facebook page for more amazing images.

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Zombie Filmmakers Have Stellar Advice for Other Teens With Down Syndrome

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Last year Sam Suchmann and Mattie Zufelt made headlines when they launched a Kickstarter campaign to gain funding for their yet-to-be-titled zombie movie. After just three weeks on the crowd funding site, 1,494 backers donated $68,936 to the teens, and in August, Suchmann and Zufelt finished principal shooting the film. So what’s next for the boys? Not only are they looking forward to releasing the film this spring, but they’re already thinking about a sequel.

sam-mattie-chairs
Small Frye Photography

Their zombie flick is currently in post-production, but in between busy school schedules and the production of a documentary about the making of their film, Suchmann and Zufelt made some time to chat with The Mighty via e-mail. They also shared some awesome photos from the set, and we got an inside look at candid moments with the cast and crew. The teens, who met in elementary school while competing in Special Olympics, discussed their first filmmaking experience and offered advice to other youth with Down syndrome.

sam-mattie-zombies
Small Frye Photography

The Mighty: When you realized you met your Kickstarter goal (and then some!) what was your first reaction?
Sam: OMG
Mattie: It was awesome!

The Mighty: Do you have a favorite character in the film?
Sam: Tom the little nerdy kid, because he makes geekiness so cool
Mattie: Favorite character was Pauly D because he’s Pauly D.

sam-mattie-pauly-d
Small Frye Photography

The Mighty: If you could choose three words to sum up the experience of making the movie, what would they be?
Sam: Fun, creative,powerful
Mattie: Fun, funny, entertaining.

The Mighty: What was your favorite part about filming? Least favorite part?
Sam: [My favorite part was] the social life behind the scenes…eating together, laughing dancing and singing (particularly singing songs from “Grease”). [My least favorite part] was drama during filming and meltdowns from being hot and stressed.
Mattie: Favorite parts were filming the spring break and boat party scenes. I had no least favorite part!

sam-mattie-jet-pack
Small Frye Photography

The Mighty: Will you make a sequel to this film? Or are you interested in trying a new genre?
Sam: Yes [we are] working on a sequel, maybe with Zompires and werewolves, but we might try other genres too.
Mattie: Possibly set in the south, maybe with werewolves.

sam-mattie-planning
Small Frye Photography

The Mighty: What advice do you have for other teens with Down syndrome about following their dreams?
Sam: Never change who you are, follow your dreams, don’t let anyone tell you different and s*%ew the haters! Be timeless… rock on, go wild!
Mattie: Do what you gotta do, you can do it.

Not only did the best friends write and and star in the film, but they had visits from a number of famous faces, including DJ Pauly D and legendary director Peter Farrelly. Director Robert Carnevale shared his thoughts on the film’s Facebook page and wrote, “Watching Sam and Mattie grow over the past few years has been amazing. But even more amazing is how much I’ve found myself growing and learning from them every day.”

sam-mattie-laugh
Small Frye Photography

The young men will also be the subject of a documentary about the making of their movie, so we’ll be looking forward to that as well. And the trailer? We hope to get our eyes on that by the end of the year.

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Actor With Down Syndrome Makes Debut on the U.K.’s Longest-Running Soap Opera

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Liam Bairstow is the first actor with Down Syndrome to appear on ITV’s hit series “Coronation Street,” and on Sunday, September 13, he made his small screen debut.

Joseph Scanlon/ITV

Bairstow, 26, starred as main character Cathy Matthews’ nephew, Alex, and he will continue his guest role later this year, The Independent reported.

ITV confirmed that Bairstow would be joining the show via Twitter in August, and at a network press conference later in the day in Manchester, England, producer Stuart Blackburn told reporters that they discovered Bairstow after running a workshop for actors with disabilities.

“It was recognizing that they get so few auditions, and actually we found a young guy there called Liam Bairstow, an actor with Down’s syndrome,” Blackburn said, according to Digital Spy. “He’s going to be coming in as Cathy’s nephew. It’s not some politically correct thing. We actually found there a really great actor with a wonderful sense of timing. The cast have been really enjoying working with him.”

Joseph Scanlon/ITV

Bairstow previously worked with the theater company Mind the Gap, which he joined in 2009, according to an interview on the group’s website. Interestingly enough, Bairstow also revealed that the only reason he would part ways with the act was if he got a television role.

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