Autism affects everyone differently. But always remember that you’re not alone. Even though autism can manifest with a variety of symptoms, some of the emotional and practical responses remain very consistent from one situation to the next.
Here’s a brief glimpse inside the lives of two parents of children with autism.
Born just four minutes apart, twins Janna and Jonah seemed perfectly normal until they reached about eight months of age. Janna soon started to outpace Jonah, and their mother, Janelle, became concerned. She says Jonah didn’t sound quite the same when he was babbling. He didn’t seek out his mother’s face and engage in the careful study of her features that Janna was making.
He’d glance at her, and even smile, Janelle recalls; but he didn’t want to hold her gaze. She ended up consulting a book about child development and just before the twins turned one, she realized that something might really be going on.
Once Janelle realized Jonah was not hitting the typical milestones for first-year development, she took him to the pediatrician. The pediatrician took her concerns seriously, asking numerous questions about Jonah’s development. She answered most of the questions with a “no,” slowly realizing just how far behind Jonah had fallen in comparison to his sister.
When the doctor recommended that she have Jonah evaluated further, Janelle says she felt like she had been punched in the gut. Up to that point, she had hoped that she was overreacting to some “minor” developmental issues.
When the pediatrician was also concerned, she said, “It suddenly felt real. Everything I thought I knew about my child changed so fast. I didn’t have time to digest it until later. It took me a long time to realize I was actually grieving.”
Janelle says that she always had to remind herself, early on, that this wasn’t something that would go away; that it changed her expectations for parenting her children. She realized that she was grieving for her expectations for Jonah, and she felt guilty about it.
“It was like all of the possible futures I saw for both my children changed the instant he was diagnosed with autism,” she recalls. “I couldn’t see the future without the lens of autism.”
Janelle has been parenting Jonah and Janna for nine years. She’s not afraid to admit that she had to get help going through the diagnosis. She eventually learned how to plan for Jonah’s issues with textures, sounds, and routine changes.
“It was more than just coming to terms with the diagnosis,” Janelle says; “it was learning how to live with autism and help Jonah have a full, active life.” She found support groups for parents of children with autism. She made a point to seek out the services to which Jonah was entitled.
She had to let go of the old expectations of how their family life would be, and open up to different ways of coping, changing the family dynamic as needed, and giving both of her children the attention to thrive.
“Feeling guilty,” she says, “isn’t something that fits into my schedule right now. I couldn’t help that I grieved for Jonah’s ‘normal’ childhood when he was diagnosed. It was a natural part of shifting from one parenting gear to another.”
The moment his daughter was born was joyous, immediately followed by one of the greatest despairs anyone can know. Glen’s daughter, Jade, came into the world six weeks early as part of a frantic effort to save her life, as well as that of her mother.
The effort was only partly successful, with Jade losing her mother, and Glen losing his wife, just moments after Jade’s hurried birth. Torn between grief and joy, Glen took his daughter home and prepared to raise her as a single parent.
Jade seemed to do well and hit the appropriate milestones, even though there were lots of instances of what Glen thought were “tantrums.” It wasn’t until Jade started preschool that a teacher told Glen it might be a good idea to have her evaluated.
Glen says that having Jade diagnosed at the age of three made him feel both inadequate (“How could I have missed something as big as autism?”) and relieved (“At least I’m not just a terrible parent!”).
He says that when she was younger, the differences between Jade and her classmates were relatively small. “As she got older, though,” Glen says, “it became a lot more apparent that there were areas where Jade just wasn’t keeping up with her age group.”
Glen knew how important it was to get early assistance, but always reminded himself that no amount of intervention would get Jade off the spectrum. “I had to change the way I thought about being a parent, and be willing to learn things that would make life easier for Jade, even if they don’t necessarily make it easier for me.”
The biggest thing, Glen maintains, is consistency. “I can’t ever change my mind about something. I can’t say ‘yes’ after I’ve said ‘no,’” he says. “It’s tough to stay consistent in the face of an all-out meltdown, but it’s necessary if I want to maintain my sanity.”
Glen says parenting Jade has been, in turns, exhausting, rewarding, frustrating, and the most beautiful experience of his life. “It’s hard,” he says, “taking things day-by-day is how I’ve always handled it.” He says he couldn’t have made it without family support and help from specialized programs for kids with autism.
Living with Autism
From the diagnosed person to all their family members, friends, and caregivers, autism has impacts that can vary as widely as the personalities of those living with the diagnosis. Just going through the process of diagnosis can be so difficult that it causes family rifts, self-doubt, and constant questioning about why autism has become part of your daily life.
Are you currently managing autism within your family? We’d love to hear your story, including the ups-and-downs and everything in between. Just leave a comment below or share privately here.