With the exception of a few, people seem to want to interact with my son without attempting to do so with my daughter. This is how I see it.
My son is charming, a voracious reader, quite the conversationalist, and autistic. My daughter is adorable, opinionated, intellectually disabled, mostly nonverbal, and also autistic.
Most people would consider it easier or more “natural” to engage my son. He’s better equipped in the rules of conventional social engagement than his sister.
It’s very clear to my husband and me that although we have two children on the autism spectrum, who share family DNA, our life is very much a tale of two children.
Moms of more than one child can probably relate to my last sentence, regardless of their children’s ability level.
What may or may not make my journey a bit different from most is that society has different approaches toward my children.
Compared to decades ago, there’s now greater disability inclusion. However, the fact remains: Modern-day beneficiaries of the autism acceptance movement tend to be verbal children and have no intellectual disabilities.
While my son neatly fits into this box often, my daughter doesn’t ever really do so.
That leaves my husband and me with the need to use very different parenting styles at this stage of their childhood journeys.
At age 2, my son was first diagnosed with pervasive developmental disorder not otherwise specified (PDD-NOS). At the time, this was considered a subtype of autism.
He underwent intensive applied behavior analysis (ABA) therapy, speech therapy, occupational therapy, physical therapy, and feeding therapy for years.
My son was discharged from ABA, based on his progress, at the age of 5. Until this day, he refers to it as graduating from ABA and remembers those days as a positive experience.
Through his therapy regimen, my son learned how to communicate his wants and needs. This is a valuable skill, not only for human interaction but also for basic personal safety.
Once he had a command of the language, he took it and ran with it.
In the early days of his diagnosis, my son appeared to show signs of emerging hyperlexia, when a child can read beyond their age level.
After the first couple of months of therapy, my then 3-year-old son and I walked through the forest on a mid-spring afternoon. He turned to me and read a sign, “Please don’t feed the animals.” I was floored.
My husband and I never taught him how to read. We simply taught him the alphabet and read to him. He seemed to have figured out the rest.
Since then, he has tested into gifted and talented classes in two school districts. He was also invited to participate in an accelerated math program in his current district.
My son also loves gaming and dreams of becoming a video game designer. He vacillates between being a little boy and a philosophical man trapped in a boy’s body.
The range of his conversations can go from expressing regret for not becoming a billionaire by investing in Zoom pre-pandemic to the ins and outs of Super Mario Brothers.
It certainly keeps my husband and me on our toes. It reminds us to appeal to his intellect while keeping in mind we’re still talking with an elementary-age school kid, even if he has shown greater ease in speaking to adults than to children his age.
My daughter can be described as the personification of perseverance and realism.
She came into this world in a most dramatic fashion. She swallowed meconium upon her delivery, blocking her ability to breathe.
Thanks to her medical team, though, she was able to breathe on her own eventually.
Being now parents of a child living with asthma and an intellectual disability, we wonder if that event contributed to these eventual diagnoses.
My daughter is mostly nonverbal. But, don’t mistake her silence for passivity. She’s in a class of her own.
Occasionally, she will spontaneously say a word or series of words like, “I want eat” when she’s hungry.
The nights I put her to bed, I tell her, “I love you.” Unfailingly, she’ll look me in my eyes, smile, and simply say, “Good.”
In our home, my daughter is known as the queen of the side-eye. What she may struggle with verbiage, she makes up in strong nonverbal communication.
In fact, I’ve been shushed by my own daughter a time or two when she thought I was talking too much.
While my son has minimal medical and community supports in comparison, my daughter’s therapy regimen is nothing short of robust.
She’s in special education designed for students who are cognitively 1 to 3 years old. She’s in a school district that administers:
- speech and occupational therapy
- adaptive physical education
- music therapy
We supplement her school resources with intensive private therapy in the form of ABA and additional speech, occupational, and physical therapy.
She’s also learning to speak through her iPad, also known as her AAC (“augmentative and alternative communication”) device.
The device allows for communication through a series of pictures and sounds. So, when she places her finger on a desired picture, an underlying, corresponding audio description of the picture sounds. A series of pictures can string together a sentence.
My husband, son, and I have all learned to communicate with my daughter in these nontraditional ways. She’s a budding communicator in multiple forms.
We keep in mind that she thrives in instances where we engage through hand-over-hand play, dancing to music, and spending quality time in the kitchen preparing meals.
On a typical day, my husband and I can alternate between talking about global COVID-19 hot spots with our 10-year-old and playing patty cake with our 8-year-old after singing nursery rhymes.
Even our range has range.
I continue to learn from my kids as I teach them life lessons.
I’m reminded by them that nonverbal expressions of love can be just as powerful as verbal ones.
My children have taught me to celebrate the small wins, especially when others may not understand our journey.
My parenting roadmap might not always look like others, but it’s uniquely mine, and that’s more than OK.
I’m now in a place where I own the fact that I have done the best I could for my children with the information I had at the time.
I have owned the triumphs and challenges in a way that’s authentically me and, therefore, authentically us.
Lola Dada-Olley is an attorney, disability inclusion advocate, mom, wife, and podcast host. She chronicled her family’s multigenerational autism journey with the launch of the “Not Your Mama’s Autism” podcast in 2020. Part audio memoir/part interview-style podcast, Lola touches on topics such as societal stigma, culture, the intersection of race and disability, healthcare, community policing, and corporate disability inclusion efforts. She is also on the board of directors of two nonprofit organizations centered on increasing access to healthcare, community supports, and/or vocational opportunities for people with disabilities. In 2021, Lola gave the TEDx talk “Your Path is Your Purpose,” where she explains how a series of seemingly disjointed life events led her to where she is today.