The thing about Kyler Sipat is he’s just like any other 20-year-old.
He’s a big sports fan, loves working out and being active but sleeps in when he can. He plays video games and keeps up with the latest Taylor Swift news. He’s quick to pick up his guitar to strum a tune and even quicker to flash a smile. Like any other 20-year-old, he’s eager to spread his wings, test boundaries and experience more independence.
Kyler has Down syndrome but that’s not the most important aspect about him to be aware of during Down Syndrome Awareness Month or any time after. Instead, you should be aware of how fun-loving he is, how fun he is and how loving he is.
“Kyler may have Down syndrome but he’s still a 20-year-old guy,” said Lindsey Sneed, Catalight’s vice president of clinical excellence. “He wants to make his own choices. He wants to have a girlfriend. He wants to have a job. He’s still a 20-year-old person who wants independence and autonomy.”
Sneed has been working with Kyler’s mother, Marsha Sipat, once a week for the past year in a parent-mediated training capacity – giving the family strategies on how to help with Kyler’s intense anxiety, ways to identify emotional triggers and work toward methods to give Kyler more of the freedoms he’s yearning for.
Kyler starts his interview off by planting a big kiss on his mother’s cheek.
“He’s a goofball. He just loves to joke around. He has a very silly personality,” said Marsha, noting his penchant for funny faces, including his signature eyebrow raise à la Dwayne “The Rock” Johnson. “He’s a very caring young man. If you’re not feeling well, he likes to give you hugs. He wants to make sure you’re OK and bring you things. He’s very nurturing. There are so many great qualities about Kyler.”
He’s extremely protective of his younger brother, 14-year-old Connor, to the point of creating united fronts against their parents as they both strive for independence. They play basketball together and practice judo. That’s not to say that they’re unlike any other brothers where squabbling is common – Marsha calls them “best frenemies.”
Basketball is Kyler’s favorite sport. The Bay Area native somewhat inexplicably became a Dallas Mavericks fan recently (Marsha thinks it was a cousin who converted him) – a team he calls “my boys” – but admits it’s a difficult decision choosing between them and his hometown Golden State Warriors. It’s probably best, he agrees, to root for whichever is winning – something he’s very familiar with.
Kyler’s basketball team took home the gold medal in last spring’s Special Olympics. He also won individual silver medals in the 100-yard and 200-yard dashes and a gold in shot put. He trained as a member of the swimming and bowling teams, as well.
“It was super great,” he said, adding he’s looking forward to 2024 signups next month.
Unlike many young people who dabble in search for their special thing, Kyler is steadfast in his pursuits. Though his list of hobbies is seemingly endless, so is his passion for them.
“Kyler is a very social guy. He loves to be out and involved in things. If he sees something he wants to try, he’ll put himself out there and try it. He’s not afraid to try new things. He doesn’t let any of his disabilities hold him back,” said Marsha, adding Kyler, who struggles with speech, recognizes many people can’t understand him. “He doesn’t let that stop him. He finds ways to communicate and get his point across. I admire that about him. He doesn’t give up.”
Kyler’s been playing guitar since age two. He used to play drums, too, but his set needed to be sold to make room for new bedroom furniture. He beatboxes. While he enjoys any and all music, Justin Bieber and Selena Gomez, along with Swift, are his favorite.
Perhaps his favorite non-competitive activity is Kendama – a Japanese skill-toy version of the classic wooden ball-and-cup game. Since picking up the hobby in grade school, Kyler’s spent countless hours perfecting his tricks.
“I have a lot of determination,” said Kyler.
October is Down Syndrome Awareness Month
Aside from a bout with COVID that made its way through the family, October was just like any other month for the Sipats.
In previous years, the family has taken part in various October Buddy walks and other Down Syndrome Awareness Month activities. While it’s great to meet new families and exchange information, Marsha said, the ‘awareness’ aspect of the month is really for neurotypical people who have misconceptions about the disorder.
“A lot of people still don’t really understand what Down syndrome is and they label them as someone who is not capable,” said Marsha. “Getting people to be more involved and more aware of people with disabilities, in general, brings that knowledge, acceptance and understanding that people with Down syndrome are just like everyone else. They want the same things that we want. They want to feel love. They want to be included. They want to feel like they’re a part of a bigger community. I see that a lot with Kyler. He wants to be a part of that bigger community and, sometimes, he’s just not accepted. It comes down to people just not knowing and not being exposed to people with Down syndrome.”
An outgoing showman who loves to be the center of attention, Kyler is likely as good of an ambassador for anyone who hasn’t met someone with Down syndrome than anyone.
“There’s been less acknowledgement of other disabilities outside the autism spectrum disorder. Autism spectrum disorder isn’t the only developmental disability. Recognizing diversity is really important, as is what people with Down syndrome offer us and humanity in general – what they offer their family and their community,” said Sneed. “Not that he’s not defined by his Down syndrome, because that’s a core piece of who he is. He’s part of the human system – he’s still able to interact with and be part of the community. Acknowledging his humanity – what he has to offer – is really important. The Down syndrome is still there but that doesn’t take away all the other things about who he is.”
Working with Catalight
Catalight is known for disrupting traditional methods in favor of person-centered care – serving people in the way that best suits their individual needs and the needs of their families.
For the Sipats, that entailed a lot of listening and exploring what works best for Kyler, said Sneed, working on ways to mitigate Kyler’s mood fluctuations without negatively affecting his big personality.
That’s exactly what Marsha wanted.
“It’s been great. I’ve been very grateful to have that support. I’ve been looking for years,” she said. Marsha had difficulty finding the right intervention before learning about Catalight. “The only thing I wish is that we had this support sooner. I don’t think we’d be dealing with a lot of the behaviors that we’ve been dealing with if we had this help years ago.”
Mostly, Sneed works directly with Marsha, giving insight and different techniques for her to use when Kyler is becoming emotionally escalated. They go over what’s causing the behavior, ways to react (or not react) and what maintains that behavior after it occurs. Sometimes, it’s just offering extra support and reminding Marsha that Kyler’s 20 and parenting any 20-year-old is hard.
“It’s helped validate me and the way I respond to Kyler,” Marsha said. “As parents, you never know if you’re doing the right thing, if you’re saying the right thing, if you’re handling a situation in the best way it could be handled.”
For the Sipats, working with Catalight represented a different path. It’s a path that allows Kyler to make more choices. With Sneed’s support, Marsha has been able to allow Kyler some of the independence he desires – from choosing to grow a beard to greater functional communication where he’s able to better express his desires, feel heard, make requests and avoid severe escalations.
“It’s kind of neat to see that happening because, for the longest time, we dictated what we do and what he does,” Marsha said. “So, to hear him say, ‘nope, don’t want to do that’ is helpful. It’s learning for us, as well.”
It was certainly one of those learning experiences when the brothers decided they wanted to get their ears pierced. Marsha was already apprehensive about allowing Connor to take the plunge. “When Kyler was like, ‘yo, me too!’ initially, I was like, ‘oh no, Kyler, we can’t do that,’” she said. “And, then there was a reality check of, ‘why can’t he?’ So, he got his ears pierced.”
“I’m learning,” she added. “It’s not easy for me to let that control go because I’ve been taking care of him since he was an infant. I’m trying to be more aware and allow him to take control over the things he can while still coordinating and doing the things he needs me to do.”
The hallmark of parent-led care is giving family members the tools they need to teach and manage situations. That way, children receive treatment 24/7 instead of just the daytime work hours a clinician is with them. It’s just as much about giving the family independence as it is about giving Kyler more freedom.
Though she works predominantly with Marsha, even Kyler has seen a difference, calling Sneed “very helpful for my family members and myself.”
“There’s been some good, positive changes this year,” said Sneed. So much so that Kyler will be graduating from Catalight’s care in December. “I’m excited for the family. Kyler has a lot of things to do with his life. He’s going to do a lot of great things. As long as Marsha feels like she has the support and resources she needs from the respect of what we can offer. She’s been absolutely lovely to work with and I’ve enjoyed getting to know Kyler. I also want them to feel equipped and confident.”
That day will be bittersweet for Marsha. She’s proud about how far she’s come, the new tools she has in her tool belt and the progress that Kyler has shown but she’s also anxious about walking the path alone.
“I just want to make sure he’s the best person he can be, knows how to control his emotions or how to ask for help, and knows how to calm himself in situations,” she said. “I want to help him get there.”
A major goal for Sneed was to increase Kyler’s attendance at his post-secondary school where he’s set to graduate in 2025. Prior to intervention, he was missing more days than not. Now, he’s up to about an 80% attendance rate.
Though Marsha has concerns about the lack of inclusivity, the school’s work program set Kyler up with a two-year volunteer job at the San Francisco 49ers Fit Gym. That opportunity proved to be a dream come true for Kyler because, when it comes to football, his hometown loyalty is unwavering.
“Dudes! Big dudes!” he said, describing the 49ers while enthusiastically making a muscle and slapping his bicep. In addition, Kyler participated in the team’s football camp for people with Down syndrome where he was able to run drills, scrimmage, train and go shopping with players.
Next year, he’ll be a volunteer working at a sporting goods store while attending twice weekly fitness classes at a community college. Following graduation, the goal is ultimately for Kyler to land a job.
“I think that would be amazing for him,” Marsha said. “I think he would feel so good about himself earning his own money.”
As with any 20-year-old, the natural question becomes, ‘what does Kyler want to do for a living?’ It needs to be a job where he can be his outgoing self, where he can be around something he enjoys. So, what does Kyler like?
“I like doing pushups,” he said. “I do them on my fists.”
The gym, Marsha explains, was a perfect job for Kyler: “He’d be cleaning the equipment and doing a little dance. A guy would walk by and he’d be like, ‘what’s up big guy?!’ He loved interacting with people who were doing something he loves.”
Of course, finding your dream job is hard for anyone. With more than twice the unemployment rate of neurotypical job seekers, unemployment and underemployment in the intellectual development disability community is a gigantic problem.
“Even though Kyler is perfectly capable of holding a job, I think some stigmas still exist that may hinder him from getting a job,” Sneed said. “I think he’d be a great employee.”
That’s where awareness comes in. While work programs and working with organizations to support the hiring of people with disabilities are certainly important, Marsha said, shifting the culture starts with inclusivity at the school level. Students who interact with other students with disabilities will see them for who they actually are and carry that lesson into the workforce.
“In every organization there is a job for someone with Down syndrome or any disability. They can be a light. They can come in and show people a different side of what they think a person’s disability is and what they think their capabilities are. We all have our limitations. We all have things we can’t do. But, despite that, there are places in any business where Kyler would thrive. He would make coworkers smile, impress and they would say, ‘wow, I’ve never been around anyone with Down syndrome, he’s got such a great personality,’” Marsha said. “I think, until companies open up more opportunities for people with disabilities to be part of the workforce, unfortunately, they’re not going to see them shine like that.”
Down Syndrome Awareness Month for Kyler this year was about celebrating being a regular 20-year-old. It’s been about showing off his personality – showing who he truly is in order to dash stigmas and prejudices. Given that opportunity, others experiencing that interaction – maybe for the first time – will see what he’s capable of.
Or, to sum it up as Kyler would say, it’s all just about being a “cool dude.”