The Path Less Ordinary
The Agoubi family
Families navigating autism
By Crystal Kassab, Ed.D.
There is a fear of the unknown—especially when it comes to raising children, and particularly when parents sense that something may be different.
That is how Zena Agoubi felt when her oldest child, Owen, was not progressing past 18 months. At around two years old, she enrolled him in speech therapy because he was not really talking. The doctor suggested it could be a sign of autism and urged her to make an appointment quickly, given the long wait lists. Agoubi did just that—”just in case”—knowing her son would not get the help he needed if he did not have an official diagnosis.
About a year later, after a series of appointments spanning almost two months, Agoubi received the news: Owen was diagnosed with level 2 Autism Spectrum Disorder (ASD).
She sobbed alone in the car for an hour.
“I was grieving,” said Agoubi, 42. “I grieved a life I thought he was going to have.”
To help Owen, Agoubi maintains that she had to get it all out. By then, she had her third baby and was pregnant with her fourth. She worried about her other children because younger siblings are at a higher risk of autism if an older sibling has it. She called her husband, Peter, and he mourned too. Since they knew nothing about autism, the worst-case scenarios came to their minds.
Immediately, Agoubi started calling around for ABA (Applied Behavior Analysis) centers—therapy based on the science of learning and behavior. It was difficult because there were wait lists, and they needed to know whether they accepted their insurance. At that time, insurance covered nearly three months of visits; the rest had to be paid out-of-pocket, costing about $800 a month at some point. Now, there is even better coverage for Owen.
“You have to learn all of this, you have to read everything verbatim,” Agoubi said. “You also have to learn about your rights and the rights of your child.”
As a family, the Agoubis had to make sacrifices that were not only financial but also familial. They did not go on family vacations so Owen would not miss therapy. When Oscar, now 5, was a baby, he ate and slept in a car seat because they were on-the-go because of Owen’s appointments. A lot of their family life revolved around him at first, but now they have struck a balance so the rest of the siblings, including sisters Norah and Eden, will not harbor resentment in the future.
Owen has never asked why he is “different.” One of his sisters questioned their mom why he goes to therapy, and Agoubi explained that he just needs extra help, likening it to helping button a shirt or a basketball coach helping an athlete. The family has normalized getting help, so they never fear asking for it.
“What you instill in them now becomes the norm,” she asserted.
Agoubi appreciates therapy that includes the whole family, so the siblings can learn to better interact with Owen. Since he is the oldest child, she encourages the kids to go to him for help since he is the big brother, and she wants them to see him as a protector and a helper. They do not see him as being different; rather, he is just Owen, and sometimes he needs extra help. That does not mean there are no fights over toys, the TV, or the iPad.
“Like any family, we have our good days and our bad days. And I have to also consider the other kids’ wants and needs, and that’s a balancing act.”
Agoubi and Peter also balance their roles as husband and wife. While Zena is the caretaker, and Peter is the provider, they are not unlike any other couple with four children. They believe that clear communication is key to a strong relationship, and they make time for each other without the kids. Sometimes, that looks like a simple dinner and a Target run.
They are fortunate to have family members to help watch the kids, and Agoubi affirms it is okay to say you are tired and need a break, even just to eat a meal in peace.
The Agoubis do have “Girls Day” and “Boys Day” with each parent, and sometimes Peter takes all of them on his own, which gives mom time for a “Zena Day” to get a manicure/pedicure, lunch with a friend, or shop for herself. She wants other parents who have a child with autism to not let fear steal their futures or their family’s memories, and to not worry about what other people think. Agoubi contends that getting Owen on a path that God wants for him was more important.
“To know Owen is to know God, love, and peace,” said Agoubi.
Linda Jajonie felt the same way about her son, Christian.
“God gave us a gift to carry us through,” she said. “I was once asleep, and now I’m awake!”
Like Agoubi, Jajonie is also a mother of four who felt it was important to treat them all the same while also acknowledging Christian’s needs. She was an elementary teacher at the time, and she understood that early intervention would help the whole family support him and each other.
Jajonie already had a one-year-old son, Jevon, now 24, when she gave birth to twins, Christian and Cameron. While she was working on her Master’s in Early Childhood Education, she would compare the twins, now 23, and something about it made her feel uneasy. The doctor told her that Christian has just a developmental delay, and she should wait until he is four or five years old before she tries to get any kind of diagnosis. That did not sit well with her.
When Christian was a little over a year, Jajonie took him to the University of Michigan for testing, and three hours later, he was diagnosed with autism. They taught her what to do, and she quit her teaching job and her graduate program to get started and reinforce the therapy with the rest of the family.
“I went through denial, sadness, depression… I just had to surrender it to God. I gave it all to Him, and He guided me,” she said.
There was generally no widespread insurance coverage for ASD treatment in the early 2000s. This was distressing to the family as they were on one income; however, they were blessed by family members who sought to help Christian get the therapy he needed. Years later, insurance companies began including therapies for special needs.
It was still hard.
There were now four kids in the family, with Ave Maria, who is currently 18. They moved to make sure Christian was in a great school program. Christian was on a gluten-free and casein-free (GFCF) diet, and there were not many options back then; a small bag of groceries from Whole Foods cost $75. Jajonie would take Christian’s own food in a Tupperware everywhere they went. As a young teenager, they started giving up on that diet, and his behavior was unchanged, so they felt safe to move away from those groceries.
Jajonie became increasingly closer to God after her husband, Steve, told her it was a mortal sin to skip church and encouraged her to quit hurting herself by doing that. Though she was proud to be a mother of an autistic child, she realized she had to go because her grief had already settled in. She has since been involved with the Office of Life through the St. Thomas the Apostle Diocese and Friendship Circle West Bloomfield and hopes to organize events that bring special needs families together within the Chaldean community.
She believes her son, Christian, taught the family what love, hope, and faith look like.
“Mother of God is so welcoming to us, and everyone knows and loves Christian,” she said.
Agoubi and Jajonie hope others will see the unique gifts of people with special needs and accept them as they are. They also want families to know they are not alone. They insist the community be more open-minded when talking about autism and other neurodivergencies and not shy away from talking about them.
“Take the trips. Go to the parties. Show up to the gatherings even when it feels hard,” said Agoubi. “Life with our children may look different from what we imagined, but different doesn’t mean less beautiful.”
Fun Facts
Owen, 9
Math is his favorite subject.
Likes to play “Don’t Break the Ice” game
Enjoys Little Caesars breadsticks
Likes to draw safari animals
Received “Award of Excellence” for his artwork in 3rd grade.
Christian, 23
Taught himself piano at age 5.
Writes in Japanese, speaks Dutch
Has perfect pitch
Loves letters and numbers
Won 1st place at Birmingham Seaholm’s Talent Show for his mashup of Taylor Swift and Bruno Mars.