The Darr Family’s Journey with Sensory Processing Disorder

When Elijah Darr was born, his parents knew something was wrong. For the first three days of his life, he wouldn’t stop crying. But it wasn’t until a year and a half later that the Darr family were given an explanation on what was wrong with their son. Elijah was diagnosed with SPD, sensory processing disorder. “Elijah’s diagnosis came as a tremendous relief. It was like a breadth of fresh air. We could finally put a name to the struggle, the unbelievable difficulty we’ve been having with him medically and behaviorally since the very moment he was born,” says Mandy Darr, Elijah’s mother.

SPD is a disorder of the brain that affects children and adults. A genetic disorder in many cases, SPD impacts the brain-body process, otherwise known as sensory processing. How a person interacts with their environment, perceives the world, and understands physical and mental sensation are all part of sensory processing.

According to Darr, a major part of navigating SPD with her children was establishing their sensory preferences. “All of us have sensory preferences and differences. We lie somewhere on a continuum of what feels most comfortable to us,” she says. “A mom is driving a car down the road and she turns down the radio to pay more attention to her driving. That could be an example of anyone having a sensory preference in that moment.”

Elijah, now eight years old, is the third of four children in the family. Since his diagnosis, it’s been established that his older brother Isaiah, 13, and their dad also have SPD.

The STAR Institute, an organization located in Centennial dedicated to treating, educating, and researching sensory health, was a key contributor in helping the Darr’s understand SPD, as well as educate the parents on how best to support their children. “Their perspective is that you change. You change the way you live in order to set {individuals with SPD} up for success. Not just going to a once-a-week therapy.”

“Their own ability to advocate for themselves and participate in things we never thought possible for them has become a reality.” Isaiah competes as an elite figure skater and Elijah participates in team sports. “I never imagined my child would ever be able to participate in an organized sport with other kids, but he is.”

Caregiver Tips

Here are some helpful tips if you’re going through something similar. Remember, you’re not alone. Connect with other people who have been through the experience as well.

1. Listen to the individual with SPD and really try to understand their body and their experience. Try to get the information directly from the source, how they’re doing, how they’re feeling, what they’re needing at the time.
2. As a parent, you know when something is wrong with your child. Follow your instinct if something seems off and connect with people who have been through the same type of experiences.
3. Educate yourself as the caregiver and alter your lifestyle. “We’ve changed how we operate as an entire family. That has led to greater success. We have changed how we live every day, not just gone for a once-a-week therapy,” says mom Mandy Darr.
4. [Things are] constantly changing. As soon as we get into a routine, the child or person with SPD will change. So, your systems and adaptations have to change with them. That’s something I wish I had known. As soon as we were doing good, then all of a sudden, my son’s falling apart again. You don’t expect it to change, and then a year goes by. Be willing to go back to the drawing board.
5. “You’re not alone, so connect with other people who have been through that experience.”
6. “Listen to the individual {with SPD} and really try to read and understand their body and their experience. Try to get the information directly from the source, how their doing, how feeling, what they’re needing at the time.”
7. “As a parent, you know when somethings wrong. Follow your instinct if something seems wrong and try to connect with people who have been through the same type of experiences.”
8. “Educate yourself as the caregiver. We’ve changed how we operate as an entire family. That has led to greater success. We have changed how we live every day, not just gone for a once-a-week therapy.”
9. “It’s constantly changing. As soon as we get into a routine, the child or person with SPD will change. So, your systems and adaptations have to change with them. That’s something I wish I had known. As soon as we were doing good, then all of a sudden, my son’s falling apart again. You don’t expect it to change, and then a year goes by. Be willing to go back to the drawing board.”