I have been working in late night television for Conan O’Brien for nearly 10 years, currently as the lead editor for Conan on the TBS network. Late night television has an extraordinarily demanding pace. An old colleague of mine used to refer to it as the “speed chess” of editing. It demands that your first instincts when editing are the best ones. The pace also puts extraordinary pressure on your writers and producers. I like to think of editors as the pilots hired to bring the plane in for a landing that may have already lost an engine, so it’s important that you maintain balance and focus.
I am the father to three amazing kiddos with special needs. My first daughter was born with the amyoplasia form of arthrogryposis multiplex congenita. She is also nonverbal. My youngest daughter was born with amniotic banding syndrome. For her, it means she only has a few fully developed fingers and a prosthesis on one of her legs. We’ve addressed her physical challenges through surgery and she has lots of fun sprinting around with her “robot leg,” which is what we call her prosthesis. We are in the middle of adopting our son and hope to bring him home in the fall. He has similar orthopedic challenges to our second daughter.
I take my jobs as editor and as a father very seriously, but it is also important to note that I am happy. Here are some things that I have learned over the years. I have made mistakes in every one of these rules, but I try every day to be better.
Five years ago, my daughter was born with a rare condition called arthrogryposis as well as additional cognitive delays. My wife quickly gravitated towards the internet support community to learn as much as she could, while I was feeling stuck, asking myself the larger questions about my daughter’s path in life. Right after her first birthday, we found ourselves attending a National Support Conference for Arthrogryposis. It was there I met “Scarman.”
Ward “Scarman” Foley was born with arthrogryposis and has spent the last 30 years giving speeches across the nation and abroad. He is also a published author and hospice volunteer. He spoke at that conference and engaged new parents, old parents, teens and adults who had never met another person with the same condition. These were his words:
My name is Robert James Ashe. We’ve never had the pleasure of meeting but I’ve been a huge admirer of both, you and Apple, for a very long time. I’ve worked in film and television for the past 20 years using Mac products to plan, design, edit and create works to entertain the viewing public. In my household, you will find Macbook Pros, iPads, iPad Pros, iPhones and a really old mac pro used by myself and my wife. My oldest daughter uses her iPad as her voice. One of the biggest things I’ve always admired about Apple was their commitment to giving people with disabilities access to your equipment. It is because of this fact that I am writing you today to make one small humble request. I am requesting that you add medical terms to the Mac’s spelling dictionary. The word I personally am after is “arthrogryposis.”
My first daughter was born with the amyoplasia form of arthrogryposis multiplex congenita. She has extremely low muscle tone on all four of her limbs, no bicep movement in her arms, her elbows don’t bend all the way and her knees don’t straighten. She is also nonverbal and currently participates in ABA therapythroughout the week.
My youngest daughter was born with amniotic banding syndrome, for her, it means she only has a few fully developed fingers and she had to have her leg amputated. She’s addressed her physical challenges through surgery and has lots of fun sprinting around with her “robot leg,” which is what we call her prosthesis.
I take my job as a father of a child with disabilities very seriously, but it is also important to note that I am happy. I have two beautiful daughters and an amazing wife.
Here are some things I have learned along the way that I think can help anyone who knows a family like mine:
We are not given a bad life or a good life. We are given a life and it's up to us to make it good or bad". Scarman is a short documentary about author and public speaker Ward 'Scarman' Foley. Directed by Two-time Emmy Nominee Robert James Ashe.
After raising almost $18k on AdoptTogether, Rob and Angie Ashe took the 15 hour flight to pick up their little girl Fiona from China. When asked why they chose to endure the gauntlet of hardships to adopt a child with special needs from China, Rob simply replies "Because my daughter was in China."
Don’t believe what Fiona Ashe may tell you. Her parents did not purchase her at Target, though after hearing that claim enough times, her mother finally agreed to it.
“Two weeks ago in the car,” Angie Ashe says, “she was like, ‘Where did you buy me from?’ I just kind of chuckled. ‘We didn’t buy you from anywhere. Do you mean where were you born?’ ‘No, where did you buy me?’ I couldn’t answer her correctly. I kept saying, ‘You were born in China; we adopted you.’ Finally, I said, ‘You want me to say we bought you from Target?’ She just smiled. ‘Yeah, you bought me from Target.’ OK!”
As charming a story as that would make, the truth is equal to it—and considerably more plausible. It starts with longstanding plans that Angie and her husband, Rob, had made to adopt a child. “That was on the table even before we got married,” Angie says. Their intentions became more focused after their daughter Elliot was born with arthrogryposis, a disease that disrupts joint movement. Elliot’s case is extreme: Born with her arms stuck straight and her legs bent, she has been a patient at Children’s Hospital Los Angeles since infancy, undergoing numerous surgeries and years of physical therapy.
We were tired. It was a long day.
We had decided to take our daughters for a surprise afternoon trip down to Disneyland. They love that place more than anything any of us has ever loved in our lives. Our visits to Disneyland are usually magical. We vowed to never take preschoolers, yet somehow we’ve been there four times in the last year.
This trip was different. The drive was an unusually brutal two-hour journey that got us there in the late afternoon. It was also our first trip to Disneyland with our oldest daughter in a wheelchair. She was born with a condition called arthrogryposis, and she has to wear braces in order to walk. She enjoys walking, but she’s been recovering from a major surgery and hasn’t been allowed to walk much over the last three months.
This was also our first trip to Disneyland for our youngest daughter’s prosthetic leg. She was born with a condition called amniotic banding syndrome which has left her without a usable right foot. Thanks to surgery in December, she’s now running around with her new “robot leg,” as it’s called in our household.
I used to hate the beach. I loathed the bright, hot sun that makes my eyes malfunction and my pale skin burn brighter than the reddest lobster after three minutes of exposure. I couldn’t stand the smell of the sea, a smell that can only be described as ten-day-old seaweed covered in iodine and set on fire in my nostrils. I was never comfortable with the fact that no matter how careful I was, I was always a magnet for small packets of sand that found their way into my car and laundry for days to come.
Then, I became my daughter’s father.
Rob Ashe's daughter was 4 days old when he first saw the word "arthrogryposis," written on her incubator in the NICU. Elliot, now 4, had been born with severe contraction in her major joints, resulting in extremely low muscle tone. Only one in 3,000 newborns has the condition. "There still isn't a ton of research," says Ashe, an Emmy-nominated editor on TBS' Conan. Geneticist Dr. Judith G. Hall, who has studied arthrogryposis extensively, had one big piece of advice for Ashe when she learned about his line of work: “You need to get celebrities involved.”
Bouncing up and down and chattering, 2-year-old Fiona wielded her popsicle like a staff and climbed atop her mother’s lap until she felt tall enough to command the attention of the room.
Once settled, she sang, crooning nonsensically to her sister laying on the rug.
Noticing her sister’s glasses had fallen askew, Fiona zoomed to the rescue, knowing 4-year-old Elliot can’t adjust the frames herself. Well-meaning but not yet gentle, as most 2-year-olds, Fiona picked up the glasses only to be swooped up by her mother, who then hugged her daughters and helped Elliot stand.
To the Ashe family, almost nothing is as they expected; they’ve adjusted to a “new normal,” meeting each chaotic moment with a laugh and hug.
Being parents of a child with special needs opens up a whole new world you wouldn't even know exists until you become one. It's an inspiring world, but it can also be very challenging. One Santa Clarita couple accepted this challenge and then some.
All signs were pointing to a healthy baby girl for Rob and Angie Ashe. Doctors didn't see the clues in the ultrasound.
"We did not find out until she was born. It was a surprise in the OR," said Angie. "And it was a blessing actually that we didn't know ahead of time because there's nothing you can do."
Their daughter, Elliot, was diagnosed with a severe form of arthrogryposis, a rare condition that affects about one in 10,000 babies. These children have stiff joints and abnormally developed muscles. The cause is unknown.