Editor’s note: CAP employees have unique backgrounds and experiences, shaping us as an organization and reflecting the diverse communities we serve. July is Disability Pride Month, an opportunity to celebrate those living with disabilities and honor their achievements, experiences, and challenges.
Karen Fisher, senior GIS analyst, joined CAP in 2022, bringing more than 20 years’ experience in hydrology and geographic information systems (GIS). Andy Fisher, senior software engineer, joined CAP in 2010 as a programmer/developer and now has more than 25 years’ experience building applications using GIS for Arizona’s water resources industry. Their youngest daughter Sammi has been diagnosed with a neurodevelopmental disorder.
Sixteen-year-old Sammi Fisher is both a typical teenager and one in a million. She loves shopping, wearing stylish clothes, experimenting with makeup and hanging out with her friends. And, she has been diagnosed with an extremely rare neurodevelopmental disorder, FOXP1.
Sammi’s diagnosis means that her life is not typical. Her path has had ups and downs, dark corners and bright days. Fortunately, she has many cheerleaders who help her navigate life, including her parents, CAP’s Senior GIS Analyst Karen Fisher and Senior Software Engineer Andy Fisher.
When Sammi was quite young, her daycare provider took Karen aside and said, “something is wrong.”
“It was scary. She was a grandmother who had been doing daycare for 40 years, so she knew,” said Karen. “I just thought Sammi was developing a little slower and would catch up. I didn’t think it was anything to worry about. I thought that it had to be fine.”
Karen and Andy took Sammi to many specialty doctors. It wasn’t fine. But the doctors didn’t know what “it” was. Sammi didn’t have a common diagnosis like autism or have Down’s syndrome. Genetic testing didn’t immediately reveal a diagnosis.
As she aged, Sammi continued to struggle with speech, language and cognition. Andy said doctors thought her condition was an auto immune response in which the immune system attacks the body’s cells, so she started intense therapies to help her progress.
“Once a month, I would spend a Friday at the hospital with Sammi as she received a IVIG infusion,” said Andy. “That went on for years.”
Progress was slow, but the family faced the challenges together. Sammi is the youngest in this blended family of five. Her older sister Taylor and older brother Tony stepped up, joining Andy and Karen in providing unconditional love and support and even more importantly, empathy, compassion and understanding. It’s not always easy.
“Sammi’s speech and language are similar to a toddler. She uses a few words, but only family understand her,” said Karen. “Some words she doesn’t quite get the right word. Negatives are hard. Complex sentences are hard.”
Many things are hard for Sammi, but it doesn’t stop her. She started kindergarten in a traditional classroom, but it wasn’t a great fit so in first grade she transitioned to a self-contained classroom, which was a much better fit.
“We found a good program and realized it was so much better for her because she had peers she could connect with and didn’t feel like she was so far behind,” said Karen. “It was really, really good.”
Finding the right academic fit for Sammi is one of the many challenges they have faced and overcome. Even getting the diagnosis of FOXP1 took nearly a decade and was on the third round of genetic testing, thanks to advances in the field. Andy said FOXP1 is a gene mutation that is characterized by delays in milestones, speech and language impairment, cognitive deficit and some behavioral issues. It’s an extremely rare diagnosis that fewer than 1,000 people in the U.S. have received.
To say Sammi is one in a million is an understatement. A diagnosis answered the “what,” but the path forward was forged entirely by Sammi and her family.
Andy said Sammi is social and friendly and enjoys spending time with friends, so finding her tribe – and working that into her schedule – was critical.
“Sammi is extremely social and gets bored easily, so having her spend time with friends is important,” said Karen. “A few years ago, I decided the best way for us to do that, was for me to become a Girl Scout troop leader. Her girlfriends are all in the troop so they can all have planned time together.”
Sammi also enjoys CAP’s annual Kids Day event, an opportunity for her to see where her parents work and participate in activities with the other kids.
And, like many teens, Sammi also participates in a sport: ice skating. She took up the sport about three years ago through a special program called Ice SkateAble. The program was created by a teenage neighbor who wanted to provide skate lessons to children of all abilities. Sammi was hooked and has even been featured in a news story about the program and how she is a top student.
“Sammi loves skating, and the experience has helped her grow a lot,” said Karen. “She’s stayed with it a long time and even done some competitions. Her self-confidence has grown so much because of it.”
Sammi has grown, and so has her family.
“Sammi is like having a four-year-old teenager, so you get the joys and frustrations of both,” said Andy. “She’s happy and friendly but cannot be left alone.”
It takes a village to be able to provide Sammi the support she needs, and it starts with her family. Everyone in the family is there for Sammi and Andy and Karen are the epitome of teamwork. There are so many responsibilities in taking care of a household, you add in therapies and doctors appointments and it can get overwhelming at times.
And there is patience, understanding and compassion — and so much more.
There’s support for Sammi, exploring unknown paths to ensure she has the services, education and experiences that work for her.
There’s optimism, seeing Sammi’s diagnosis as an opportunity to meet people and learn so much.
There’s joy, appreciating all things Sammi, like the fact she makes friends wherever she goes, smiles and waves to complete strangers just to bring a smile to their face, and is protective of her older siblings.
There’s courage, accepting a life that they never expected and digging in to make it exceptional for the entire family.
“Acceptance took a long, long time,” said Karen. “But now we’re definitely at a point where we can lean in.”
Andy and Karen are definitely leaning in and enjoying life.
Karen smiles when she talks about Sammi’s confidence, swagger and strong will and she encourages people to ask about Sammi’s diagnosis instead of just staring. Andy is proud of his daughter and makes sure she goes everywhere with the family, including a recent three-week vacation to Greece.
They understand Sammi’s need to unwind each day as she swings in the backyard and listens to Broadway and pop music.
They recognize Sammi has many gifts and believe her biggest gift is her empathy for others.
And, above all, they embrace being along for the ride in Sammi’s exceptional life.
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