PROVO — There are recruiting trips away from home for BYU assistant head coach Ed Lamb, then there are trips that involve so much more.
This past week Lamb made a recruiting trip to several islands in Hawaii accompanied by his wife Sarah. They left four kids at home, including the youngest, 8-year-old Edward, a child with autism who is not potty trained, cannot speak and if he somehow escaped supervision, would likely just keep going until he became lost or found by strangers.
That’s the scary reality for Ed and Sarah Lamb. But it is the life they live.
One in 68 children across America is diagnosed with Autism Spectrum Disorder, and there are an estimated 16,000 in Utah.
“Sarah was the first one to recognize the symptoms," said Ed. "Our son was diagnosed, by my recollection, by age 6 months, where some other children are usually diagnosed by age 3 or beyond. Some people we reached out to said, ‘Oh, no, it’s way too early to make that diagnosis.' But we did.”
Edward meets some of the most severe criteria on the spectrum.
“The thing that stood out to us was he would really strain to turn his face away from us in an effort to not make eye contact," Ed said. "That was at about 2 months. We knew something was going on there. At every developmental stage as a child, he was significantly delayed — crawling, walking, even eating.
"He is 8 now and up until two years ago, he couldn’t take a bite out of a sandwich. He could eat anything, even a steak, but he couldn’t take a bite out of something and then chew it, he did not know how to do that. It’s just a strange disconnection somewhere in the brain.”
With Edward’s diagnosis came help, including special schooling, doctors and therapy. “I’m not sure what difference that will make for him long term. What I’ve learned by attending his schools and observing and talking to other parents is it is probably a misnomer to call it autism because there is so great a spectrum of what that means. In five, 10 or 50 years, we might not use that single term, it might be called something different,” said Ed.
“Most parents of the kids at the school where he goes now, Utah Autism Academy, would have a different definition of what it is Edward has.
“But my wife, from the very beginning, dove into the necessary paperwork and applications to find him the best help and resources possible," he continued. "She really led the charge in researching everything to learn how to help, teach, correct and lead him. The thing that we realized early on, and we came to an agreement on, is we didn’t really want to play the role of therapist and doctor to our son. We needed to enjoy him for who he is.
“He might enjoy sticking his head into a bush or plant outside for an hour or sit there and scrape the dirt with his hand. It is just different from what we expect from our other kids and we just need to enjoy him for who he is. We’ve done a better job and gotten better at that over time.”
Lamb is in Hawaii to recruit a player BYU has offered a scholarship to, and his travels will take him to Hilo and Maui as well. But if you understood the Lamb household, there are trips and then there are trips.
“With the job I have, there are just so many seasons. We talk about the competitive playing season, but that is just one with 12-plus games a year," Ed said. "We have the offseason conditioning, spring practice, and recruiting season, and each brings a new and different calendar.
“My wife constantly has to adjust to what time I have at home to help with the kids and interact in their lives. That calendar constantly changes and she’s become a pro at adapting to that life. In the eight years of our son’s life, we’ve been very fortunate to have had only two moves, when in our entire marriage we’ve had a total of eight moves in the coaching profession. Any coach’s wife knows no matter what a challenge it is for the children, home is where the family is. She does a great job of that.”
Lamb’s job is demanding. So is his role as a father and husband. But it’s Sarah that seemingly holds the family together, and she’s good at it.
“Most of the time, I don’t feel like we are equal partners. She certainly takes on the lion’s share of the responsibilities. It’s really important for her to make things as seamless as possible in the transition from a road trip or a recruiting trip so I can step right back into family life and my role as a spouse and father. A lot of the things she sacrifices. We don’t have a lot of date nights or time alone because so much of our time is limited at certain times of the year.”
The Lambs have daily reminders of what is required of them with Edward.
“We see other 8-year-old boys running around the neighborhood with friends and at times their parents may not know exactly where they are or what they are doing. Our son doesn’t have the intellectual capacity to recognize what to do and he’d get lost. He’s not potty trained, so we continue to work on potty training him.
“My wife has never been the type to dwell on what we don’t have. It’s just our reality and she goes about her daily routine with a lot of happiness and joy. She is back at school at BYU and working on her degree.
"I don’t know how she juggles all of that and keeps so happy. When I come home from a long day at work, I still think about work and it’s hard to focus on what is going on at home, at least for a time,” Ed said.
Parents dealing with children with disabilities are all around us. In BYU’s own athletic department, there are plenty of examples, including deputy athletic director Brian Santiago, football sports information director Brett Pyne and broadcaster Greg Wrubell.
They rarely speak of the challenges inside the walls of their home. Rather, they go about parenting with a nobility both dignified and admirable.
Greg and Tauna Wrubell’s son Regan is 14 and was diagnosed with autism at 3. Tauna is a full-time mom who worked professionally in local TV before their oldest (Jocelyn) was born.
"Tauna’s efforts with our son Regan are a daily wonder to me,” said Greg. “With my professional activities frequently taking me away from home and out of town, Tauna has spent countless days and nights as the lone parent. Her concern for Regan is constant and compassionate. She is kind and forgiving. She is firm and faithful.
"Our other three children may not require the amount of focused attention Regan merits, but none of them will ever question how much their mom loves them or how much she would do to help ensure their happiness. She is an amazing wife and mother.”
Santiago’s wife Kim just finished serving as a Provo City councilwoman.
"It’s hard not to feel gratitude when I think of Kim,” said Brian. “She is patient, loving, and the perfect mother to our children, especially our McKay (who has been diagnosed with autism). It’s been an adventure, but I am grateful to God for sending him to our family — because of the glimpse into Heaven I have witnessed watching the way Kim has loved him.
"She manages to balance all the different balls she has in the air with class, always being willing to give of her time to serve the community and make a difference in people’s lives. She is the best of the best!”
Pyne’s work behind the scenes as a football publicist is exhausting, but his wife Jan holds down the fort at home during his many travels.
“All three of our children have Joubert syndrome,” said Brett. “There are obvious challenges that come as a result of their special needs, but my wife Jan is just incredible in her ability to care for our girls. I really can’t express how much her loving dedication and constant care for each of our daughters means to our family. She makes it work. She is amazing!”
Coach Lamb says he and Sarah are fortunate to have three caretakers as siblings to Edward, who understand and love him.
“We are blessed to have Edward as our fourth child with three older sisters. Anna is 18, a freshman at BYU, daughter Amelia who is 14, and Summer who is 11,” said Ed.
“They are all caretakers of Edward and look out for him. Things that may be normal and safe in some households are not normal or safe in our household. He loves to go on walks with them and they are always up for feeding him, clothing him and finding out what he wants. That is hard for a stranger to figure out.
“When he’s at home, he does go to a regular school throughout the day with normal hours, but it is one-on-one therapy. With where he’s at on the spectrum, it’s hard to know if he enjoys something or if he is excited about something. He just doesn’t show a lot of emotion that way. But he does enjoy going to school every day. It’s pretty cool,” said Ed.
If you ask me, parents who raise children with such challenges are absolutely very cool.