It’s fair to say all moms are overworked and underpaid. That’s just part of the contract when it comes to caring for little people. But what no one really signs up for is the overtime, and that’s what I got. Double overtime, actually. Also known as, two children with special needs.
By the time my daughter was one, I knew she was exceptional. That’s not doting, first-time-mom talk – it’s truth. Campbell was speaking in full sentences by twelve months old. She knew all her colors, shapes and letter sounds, and could count by ones, tens, and 20s without breaking a sweat. My mom friends liked to tease that I must spend all day drilling her with flash cards, but I didn’t – she just had a brilliant brain. She took everything she saw and stored it.
As she approached two, though, the initial pride I’d felt about her intelligence turned into a pit of worry. Campbell was growing more rigid. She had extreme reactions to simple things falling out of place, like a lost Happy Meal toy or an episode of her favorite show that accidentally got erased. They weren’t normal toddler tantrums, they were unbearable breakdowns. Screams and cries that looked like they physically pained her.
She was also fearless. She would run from me at the mall and never look back; wander away on the playground. No person was a stranger. This may seem like a sociable sign, but as I observed her peers gripping their mother’s shirts when afraid, it broke me. Would my daughter even know, or care, if I was gone?
Her words were always filling our home. As I said, she spoke early and often. But eventually I realized almost everything that came out of her mouth was from a show or a book. She would memorize the words, and use them appropriately, but there was never any free thought. When I would say, “I love you, Campbell,” she would reply, “I love you, Campbell.” There was a disconnect even in our love.
I brought up these concerns to my husband, friends, and her pediatrician, but no one would validate my concern. I was brushed off and told she was just too happy or social or smart to have an issue. The consensus was to wait and see what she would become, so I did. Knowing already what would eventually be confirmed when she was three years old: my daughter had autism.
Asperger’s Syndrome is no longer an official diagnosis (it’s now considered high-functioning autism) but if it was still in existence, that would describe Campbell. She doesn’t spin in circles or flap or have any obvious outward differences, but her brain does work in a different way. A way that means social skills and conversational speech haunt her. She still, to this day, prefers to play alone.
Receiving a diagnosis was not an “I told you so” moment I was proud to have. To say I went through a deep period of grief would be an understatement. When I was pregnant and found out I was having a girl, my mind immediately went to the world of pink, proms, and wedding gowns—mommy/daughter moments that I thought were a birthright with that gender. I dreamed we’d be best friends. We’d like the same foods and books. We’d travel together. I’d host sleepovers where I’d be the perfect Pinterest mom (even just for a day) and her friends would never want to leave.
As soon as I heard ‘autism’, all of that went away.
I didn’t know a single child or adult on the spectrum, so fear gripped onto me tight. The day she was diagnosed, I opened a private Instagram account and used it as a journal. The very first post was a picture of me holding her. She’s smiling; I have dark circles under my eyes from crying so much. I remember that day so well – while she napped, I buried my head in a pillow and screamed. How was I going to do this?
But the truth is, you just get on with it. You show up. That’s what mothers do. We’re made of steel, especially the special needs ones. We bend, but we do not break.
So, every day, I got up and met the world in whatever shape I was in. I gave myself permission to be angry, sad, confused or whatever emotion rose to the top that morning, and then I put it all back in my pocket and went about my day. There were kids to be fed, after all.
And, eventually, we found our stride. I found what worked best for Campbell. I learned what triggers to avoid and which ones to expose her to so she could learn to cope. I put her into everything – and I mean everything: preschool five days a week, soccer, t-ball, run clubs, art camps, theater camps, gymnastics. I exposed her to all kinds of people and scenarios so that the fear of transitions could subside. I fought to find therapies that would help her, but high-functioning autism is a tricky one—on paper she never qualified—so it fell on my shoulders to provide experiences for her to grow. This responsibility often broke me as I felt like I solely carried the responsibility for her success or her failure.
But time is a friend, and it granted us some favors. Campbell began to mature and communicate more efficiently. When she was three years old, I remember telling her teacher that my goal for the year was for Campbell to be able to answer “why” questions and make a friend. That was it. I would never need to teach my daughter anything academic, she handled all that on her own, but she did need to be taught the importance of friendships or of looking someone in the eye when you spoke.
In true Campbell fashion, a few months after starting school her scripting almost completely stopped and she could answer any question with ease. Her free thought began to flow fast, and although we are still working on friendships and pragmatic speech, I learned to never limit my child again.
Campbell is now four and thriving in a mainstream school. She reads at a fourth-grade level. She likes dolls, donuts, and collecting rocks. She gets annoyed by her little brother and continues to think outside the box. She says she likes Anna more than Elsa in the Disney movie Frozen, because Anna is brave and real. And so is my little girl. We now agree that princesses and pink are overrated anyhow.
So that’s one child with special needs. But just as I was learning to integrate autism into our world, I got another whammy. My son—a newborn at the time, now aged two – is also on the spectrum.
Eli could not be more different to Campbell in regard to his diagnosis and day-to-day demeanor. He is strong and rugged. I don’t think I’ve ever seen him cry. She talks a lot, he talks very little—a speech delay was one of the first signs that made my antennae alert to his autism. She likes things in order, he is destructive. Campbell can pretend play with ease, Eli is literal—he has to be taught what toys are and what to do with them. My daughter has accompanying anxiety; my son has traits of OCD.
Campbell was two when Eli was born, so I spent the entire first year of his life helping her and analyzing him. I constantly went back and forth questioning whether he was or he wasn’t—because one similarity between the two siblings is that they are both high-functioning. Every time he refused a food, I speculated it was a sensory issue instead of normal pickiness, and by the age of two the writing was on the wall. He had little speech or desire to follow social norms, and when he began wandering off on the playground too, I just knew.
Eli’s needs are more clear-cut. He’s academically gifted too, but in a quiet way, which means communicating his daily needs is often difficult. He has some words, but not many. He has rigid behaviors that include holding doors open in public until everyone has passed and counting to ten before getting into his car seat. If you interrupt these patterns, prepare for a massive meltdown. Unlike his sister, he couldn’t cut it in mainstream preschool so he now attends an autism-specific classroom. This gutted me at first—the idea of missing out on Moms & Muffins, picture days, and all those other silly mainstream milestones—but my son is progressing now. He has real friends and angelic teachers, and a smile on his face when I drop him off and when he returns home. No reason at all to be sad about that.
My kids are growing and gaining daily—and so am I. That woman who jotted down her grief on the pages of a private Instagram page has now made that same account public. Gone are the days of hiding in plain sight or pretending my children were supposed to be a certain way. No one is promised proms and grandchildren. No one is guaranteed an easy existence. That’s also in the fine print of any parenting contract. We agree to bring them into this world, and then if we’re doing it right, we let go of our expectations and trade it for appreciation.
I wouldn’t have signed up for overtime—I wanted a smooth road, not one with speedbumps—and to be honest, there are still some days when I question why the only children I will ever have both had to be autistic. Then I cry about it and carry on. Because we can grieve and still believe. And these last few years have taught me just that.
Every child is a gift and has a gift. These two are mine. They’ve given me purpose and perspective. Which makes any amount of work undoubtedly worth it.