Autism’s Grip on the Siblings
By Cathy Jameson
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.
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Posted by: rose | June 10, 2017 at 04:46 AM
Same here. My older son, on whom the burden of taking care of his younger brother will fall, at the age of 8 or 9 asked about what he could do and where he could live when he was older because he would have to take care of his brother. You tell them to do what they want and not to worry but you know they do. He is now in college and pursuing HIS dreams but I still wonder how often he thinks of the responsibilities he will one day have.
Posted by: Greta | October 11, 2016 at 12:02 PM
My older son is also worried about having a child with autism. He sees what life if like with his younger autistic brother and does not want to have a child of his own with autism. He also knows how it would affect us as grandparents to have a grandchild who might be affected. What a tragedy for our families in this terrible age of autism.
Posted by: Gayle | October 11, 2016 at 10:51 AM
My own daughters, ages 23 and 24, grapple with this issue. They are terrified of having an autistic child and know the odds are in their favor. Environmental toxins and vaccines are not going anywhere soon. Roundup weed killer is stocked next to the halloween candy at target. The siblings understand the struggle.
Posted by: LindaL | October 11, 2016 at 09:50 AM
My biggest hope for my children before I had them was for them to be happier (I didn't really understand how much that meant healthier) than me. So, I pray we can keep and improve the access to truth (and truly healthy health information) we have now for future generations.
Posted by: Jeannette Bishop | October 09, 2016 at 01:01 PM
So sad that it has come to this, that siblings should fear having and raising families of their own.
Our 20 year old neurotypical son (a Human Kinetics major at the University of Guelph) has stated several times to me that he will not be having children, the risk of autism being too high. Even though he understands that vaccination and environmental toxins/pesticides are responsible for most of the immune and neurological damage he doesn't want to risk going through the years of therapies and treatment that have, to a large extent, recovered his sister.
My heart goes out to those of you with children whose damage is not recoverable.
I spent last night watching the 100 or so videos at #hearthiswell. I am so angry that my own lack of skepticism lead to our daughter's regression. I have no one but my self to blame. Never ever again, on my watch, will my children be injected with toxins.
Posted by: Louise Stanley | October 09, 2016 at 10:57 AM
Oh man! Crying now! We have three girls - our oldest, now 20, is Autistic. She is high-functioning, but still needs a lot of support. We are lucky and blessed. I too worry about our 15 and 13 year old and we have had similar questions come up. I pray that they will not have to worry about these things when having children. They are largely un-vaccinated save 1-2 that we succombed to during their childhood. They know why and, besides not liking shots, they are scared about having any of them. The current pressure is flu shots, Gardisil, and meninigitis shots. Continuing to fight them even that these ages - it is crazy. Hugs to your sweet girl and you.
Posted by: Debbie Winkler | October 09, 2016 at 09:17 AM