Photo: Leslie and Kap Seidel with their son Luke
Lucas Seidel is a social, sunny, cuddly 8-year-old kid who loves to be around people. With an early aptitude for technology, and a keen eye for photography, he solves tech challenges in the blink of an eye and has already accumulated a collection of gallery-worthy model train photography. And Luke has also taught his parents, Leslie and Kap, to slow down and see the world differently.
Luke is a child experiencing “Takiwatanga,” which is the Maori word for autism and it means “in their own time and space.” The Maori are the indigenous Polynesian people of mainland New Zealand (Aotearoa). In the United States, we use the phrase Autism Spectrum Disorder. ASD is a developmental disability caused by differences in the brain. People experiencing ASD often have challenges with social communication and interaction, and restricted or repetitive behaviors or interests. They may also have different ways of learning, moving or paying attention. Lucas, who is nonverbal, is thriving with the help of his loving and attentive parents and teachers, neurotypical peers, and a team of passionate educational specialists who are part of the High Desert Education Service District.
Processing an autism diagnosis
The Seidels moved from Northern California to Bend, Oregon in 2015. Luke was only 8 months old and was “a pretty chill kid” according to Leslie. By age 2, he was still not speaking, and a speech therapist suggested an assessment with the Alyce Hatch Center, one of HDESD’s Early Intervention/Early Childhood Special Education programs. As educators, specialists and experts began to explore Luke’s needs, Leslie and Kap stepped into a new world, full of challenges and discovery.
“At Alyce Hatch, they didn’t use the word autism right away. It felt like a safe place, a place where we could answer all our questions. I had a lot of resistance to diagnosis,” added Leslie, who has a background in psychology. “I didn’t want to pigeonhole my kid, so it was just scary, it was terrifying. And when you get a diagnosis of ASD, it doesn’t mean anything. Severity is super unclear, what’s going to happen is super unclear. When I am stressed, I ask a lot of questions. The more info the better and the Alyce Hatch Center team just held me honestly.”
Luke’s dad, Kap, had asked about autism early on, and Luke’s pediatrician was careful not to diagnose prematurely. Once a diagnosis was made, Kap took some time to process what autism was, and what it meant for Luke and their family.
“I think that when you have a child, you have all these expectations, desires, dreams and when you get this diagnosis, you have to mourn that. And that mourning process goes on and on. Not every day, but it hits you,” Leslie added.
According to Leslie, some people tend to view autism as something that’s wrong. She also feels that there is a lot of misinformation about ASD floating around, including stereotypes.
“Alyce Hatch was such an honoring place when we were so terrified. We didn’t have to go anywhere else to find all of the resources we needed. The Alyce Hatch team showed me that Lucas is more capable than I ever thought he was going to be. They expected things from him, and he met their expectations. They supported us with speech therapists and occupational therapists and parent support groups. The list is endless. The biggest thing is, I could trust them. They let me be terrified and neurotic and follow the school bus. They were so kind and they understood,” said Leslie.
The autism learning curve
“At the very beginning I had a bunch of ideas about how you parent,” explained Kap. “I was raised with very clear rules and lots of discussion. I really liked how I was raised, and I am grateful for it, but I had to rewrite the entire parenting playbook for Luke. You have to be so much more mindful of how he moves through the world, how he interprets what you’re saying. It’s a kinder, softer, gentler way. We’ve discovered that supportive parenting with high expectations moves him more quickly towards the goals we set.”
Leslie agrees that all of us can learn from loved ones who are experience autism and living in their own time and space.
“I had no idea about sensory needs until I learned what a sensory diet was,” she said. “Everyone has sensory needs; they just look different for each of us. If we all talked about it, that would be amazing. I’ve learned from Luke that I also need a certain amount of sleep, outside time, exercise and down time. It’s important to understand how we regulate.”
Leslie learned quickly to look at Luke when he is upset and think about what he needs to regulate. “When kids get upset – and all kids do – we have to understand the different knobs we can turn. Do they need more time outside, to eat, alone time, exercise, friendship?”
Another learning, Kap explained, was around sleep training.
For the Seidels, sleep training did not include allowing Luke to “cry it out” at bedtime. It was a long process that involved repeatedly coming into the room with Luke, then saying “I’ll be right back” and leaving for 10 seconds and coming back in.
“A big part of autism is that you don’t know what to expect from the world. That’s why routine is so important. Luke needs to know that we’re never going to abandon him and that we’ll always be there. Every child should be raised this way, with loving kindness.
As Luke continues to learn and grow on the spectrum, his parents do as well.
“When you first learn your kid has autism, everything feels like a mystery,” said Kap. “It was such a relief those first three years at Alyce Hatch. The constant response from the team was ‘We got this. We’ve been doing this a long time…we got this.’ That’s the thing I remember the most. He wouldn’t have the life that he has today without the early intervention that he received at Alyce Hatch and the foundation that they gave him. I absolutely love them. I couldn’t have done it without them.”
Today, Luke is in the second grade with HDESD’s Bridges Program at Lava Ridge Elementary. According to Kap and Leslie, his team of educators continues to play a huge role in Luke’s success as he navigates the second grade. The caring and highly specialized Bridges staff provides Applied Behavioral Analysis (ABA) which includes intervention and therapy.
“His experience at Bridges, is invaluable in terms of an education, getting him on the right track and self-sufficiency. That’s the kind of community and culture at Lava Ridge,” added Kap.
Communicating on the spectrum
Because Luke is nonverbal, finding innovative ways to communicate has been an important piece of the puzzle for him, his family, his teachers and his peers.
“Speech is Luke’s second language,” said Leslie. “When a kid is learning to read, you find out they are reading because they repeat the words back to you. We didn’t know Luke was reading until we gave him a coloring book that had the names of the colors printed below the picture and he colored all the names with the right colors.”
With help from the Alyce Hatch Center and HDESD’s Assistive Technology Department, Luke now uses a “talker” to communicate with others. Also called an Augmentative and Alternative Communication device, a talker is a tablet or iPad used with an app that allows people to use letters, symbols and/or pictures to express themselves.
In addition to making communication more accessible, Luke’s talker highlighted his aptitude for technology when he figured out on his own how to change the settings so he could communicate in complete sentences instead of one word at a time.
Luke’s talker has become an integral part of his life and has followed him from preschool to primary school, where his team of educators embraces and supports his communication needs.
With help from Leslie and his general education teachers and staff at Lava Ridge, Luke’s neurotypical peers made replicas of Luke’s talker and learned how to use it. The activity gave the students a glimpse into Luke’s world and some of his unique challenges.
“The kids were so engaged and amazed at how hard it is to communicate without words, and I think the exercise was really meaningful to them and Luke too,” said Leslie.
Expression through touch, imagery and sound
Contrary to some of the stereotypes surrounding autism, Luke likes physical contact and wants people around him all of the time. He wants connection, he likes to be held and always wants to play. He is also incredibly creative, using still photography, video and audio to document his world and share his observations.
“Luke finds every hidden wink and nod in every Pixar movie, including the Pizza Planet truck that shows up infrequently and randomly. Luke can spot this 5 second image everywhere,” said Leslie.
His large collection of digital model train photos also highlights his unique eye for composition and perspective.
“Everyone who spends time with Luke understands there is so much intelligence in him,” said Kap.
Challenges, fears and hopes for an independent future
One of the bigger challenges of experiencing autism as a family, explained Leslie, is judgment from others. Once during a Costco visit, Luke became upset when she told him he couldn’t have a cookie.
“A woman came up to me and said it’s so brave that I bring my son into Costco,” Leslie shared with frustration. “There’s just a difference between a child being spoiled and having a sensory overload. Sometimes I feel like people think I’m being a bad parent because they simply don’t understand.”
Because of the early intervention and education resources available to Luke, Leslie and Kap are cautiously optimistic about his future. At the same time, they carry some significant concerns.
“I have a lot of fear about his future. My biggest, dreaded fear is for when Leslie and I pass. Who is going to love him like we do?” said Kap. “Our dream is that he will bring his creativity into the world and find something that’s going to be fulfilling and interesting.”
Advice for other parents navigating an ASD diagnosis
When asked what he would say to other families navigating an ASD diagnosis, Kap said “This is going to be really, really hard, but we’re all in this together and when you are really having a hard time, know that we’ve all had that hard time. We’re always learning and we’re all human. There will be moments when we wish we could have done better. But we have to constantly take a step back, see the whole picture and recognize the difficulty of certain situations. We have to treat our kids with exceptional love and kindness, and we have to do that for ourselves as well.”