Once a week, I drive my oldest daughter’s morning carpool group to school. For the last few weeks, though, the entire crew hasn’t been with us. Several of the students have had before-school activities, so it’s been just Fiona and another young teen in the car every Tuesday morning. I miss the teenage banter of the other kids and the camaraderie this particular group shares, but I’ve cherish the time I get with Fiona as she fills me in on what’s going on in her life.
The last time I had just Fiona and the one other classmate in the car, I started our Tuesday-morning conversation asking my daughter about the usual topics. That included getting updates on her classes, asking how her friends are doing, and getting the scoop on the latest volleyball skills she’s been working on.
On these mornings, Fiona asks for updates, too. Missing her siblings something fierce due to several late-night volleyball games, she fondly asks how each of the kids are doing.
Worried about Ronan, who’s been having some odd eye issues (that we recently discovered were seizure related), I give Fiona updates on how Ronan was feeling and filled her in on some funny sibling stories I’d been saving to share with her. Making her laugh, but also making her miss the kids even more, the last time I drove her to school, I reached for Fiona’s hand and held it. Squeezing it before letting go, I said, “The kids miss you so much, too. Things will slow down soon, honey. Let’s just get through this busy week and do something fun with the family this weekend, okay?”
She smiled and quietly nodded. Thinking we’d go back to some lighter-hearted topics, Fiona wasn’t done asking questions. I’m not sure how long she’s been wondering about it, but words cannot fully describe the shock that went through me as she asked the next question.
“Mom, when I get married and have a baby, do you think if I have a boy he’d have autism like Ronan?”
Autism holds her brother back. It brings darkness and fear and worry and frustration. To learn that Fiona questions if her own future child could also be affected by such a devastating disorder broke my heart.
Still only a child herself, I am constantly reminded that my daughter is wise beyond her years. Always praying that my children won’t feel the negative impact that autism has had on me and my husband as we work through the seizures, the non-verbal communication, and the potential wandering, I was devastated to hear that Fiona carries similar worry as she thinks about her future.
The past – specifically her brother’s past weighs heavily upon her heart. Those painful memories of the past, plus his current health issues, cannot be ignored. Having kids should be the last thing on Fiona’s mind, but as the sibling of a child who’s had more medical issues than any of us ever expected, she is thinking about the future. She is thinking her family health history. And she is worrying if any of it will impact her life.
Fiona’s no stranger to the struggles.
She’s no stranger to the worry.
She knows that autism doesn’t just affect the child who’s diagnosed.
She knows, and has personally felt, its effect on the family and beyond.
Fiona knows a lot not just because of what she’s witnessed in our own home, but because of what she’s read, too. Coupling her experience and using the knowledge she’s gained by keeping current with autism news, she has a plan on what she can do now to help prevent a diagnosis in the future. I’m proud of my daughter for knowing that autism can be prevented and will encourage her to follow her plan.
Still years away from marriage and motherhood, Fiona has watched her brother painfully tumble onto the spectrum. She does not wish the same for her children. I don’t blame her. As the parent who’s experienced everything that Fiona hopes and prays doesn’t happen, I don’t blame her at all.
Cathy Jameson is a Contributing Editor for Age of Autism.