This Mom Gets Real (In The Most Amazing Way) About Raising Two Children On The Spectrum

Mom + Friends: Stephanie Hanrahan

Stephanie Hanrahan


By PJ Feinstein

 

Tinkles Her Pants is not a website about female incontinence -- well, not exactly. (It would make a great name for a blog about Kegels, don’t you think?) Instead, it’s where Stephanie Hanrahan, 34, shares the moments in her life that made her laugh so hard she, ahem, leaked a little. But she also talks about the hard things that made her cry -- suffering from depression and anxiety, finding her husband unresponsive on the floor because of an undiagnosed heart condition, and learning that her children have autism.

 

Yes, both of Stephanie’s kids are on the spectrum.

 

When her daughter, Campbell, 5, was diagnosed at 3 years old, Stephanie experienced an avalanche of emotions, including deep grief. “I felt extreme loss, like the mother-daughter dream team I had conjured up in my head, was gone forever. I didn’t know a single person with autism at the time and fear consumed me,” she says. “Would she ever drive a car, live independently, connect with me?”

 

Two years later, her son Eli, 3, was diagnosed with autism, too. He was 2 at the time, but the writing was on the wall, according to Texas mom and former labor and delivery nurse.

 

“The grieving period was shorter with my son, but still very existent. These were the only two children I’d ever have, and they both had special needs. It was overwhelming and unfair, to say the least,” says Stephanie.

 

“But here’s the silver lining to special needs parenting: as I was helping my children find their fit in the world—their voice—they would eventually give me mine.”

 

When did you learn that both of your children are on the autism spectrum?

 

I always knew my daughter Campbell was exceptional. That’s not doting, first-time mom talk, it’s the truth. Campbell was speaking in full sentences by 12 months old. She knew all of her colors, shapes, letter sounds, and could count by ones, tens, and twenties without breaking a sweat. My mom friends liked to tease that I must spend all day drilling her with flash cards, but nope, she just had a brilliant brain. She took everything she saw and stored it.

 

But as she approached 2, the initial pride I felt about her intelligence turned into a pit of worry. Campbell was growing more rigid. She had really 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 all of her peers gripping onto their mothers’ 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 book. There was never any free thought. When I would say, “I love you, Campbell,” she would reply back, “I love you, Campbell.” There was a disconnect even in our love.

 

I brought these concerns up to my husband, friends, and her pediatrician, but no one would validate my concern. I was brushed off and told she’s just too happy, or social, or smart to have an issue. The general consensus was just to wait and see what she would become, so I did. Knowing already what would eventually be confirmed at three years old:

 

My daughter had autism.

 

Campbell was 2 when Eli was born, so I spent the entire first year of his life analyzing him while helping her. 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, but by the age of 2, 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.

 

The signs and behaviors of autism can vary greatly. In what ways are your children alike, and in what ways are they different?

 

The biggest similarity between my children is that they share the same parents and the diagnosis of autism. That’s where their likeness ends. This has been a frustrating road to navigate because just as I found my stride in the world of autism with my daughter, my son was diagnosed and presented in a totally different way. I wish there was a one-size-fits-all for parenting on the spectrum, but we’ve had to change our methods and interventions greatly with each child.

 

Although both of my children are academically gifted, Campbell is more outward about it. She just turned five and reads on a fourth-grade level, completely self-taught. One day she asked to take a magazine up to her room during rest time, and over the monitor, I heard her reading every word aloud with ease. She enters social situations with ease but doesn’t know how to engage. The only friends she’s ever made at school are her teachers. In addition to her autism, she also has anxiety, which means her breakdowns are big, and often you’ll hear her fixate on checking the time or obsessively telling me the speed limit if her body is feeling “fuzzy” as she calls it. Numbers have always steadied her.

 

Eli could not be more different than my daughter in regards to his diagnosis and his day-to-day demeanor. He is strong and rugged. I don’t think I’ve ever seen him cry. Not for a boo-boo, and certainly not for a bad day. She talks a lot, he talks very little—a speech delay was one of the first signs that made my antennas alert to his autism. She likes things in order, he is destructive. Campbell can pretend to 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.

 

But thankfully, welcomingly, they both share the default of joy.

 

 

What's been the most difficult thing about raising two children with special needs?

 

Selfishly, the most difficult thing is letting go of control—of trusting that my plan for my family may never come into fruition, but perhaps there’s a bigger one in place.

 

When I was pregnant and found out I was having a girl my mind immediately went to the world of pink, and proms, and wedding gowns—mommy-daughter moments that I thought were a birthright for birthing 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 and her friends would never want to leave. For a son, I also had preconceived expectations: mainly sports and strength.

 

As soon as I heard autism, all of that went away.

 

But here’s the truth, none of that is promised even with neurotypical children, and none of it is taken away with autism. Our life looks different, yes. Is it a heck of a lot more challenging? Absolutely. Everything from meal time to shopping trips requires extra effort. At the end of most days, I’m completely depleted. But what gets me back up is that my children are progressing. And because of their autism, I no longer just exist in this world. I engage. I see everything. Every eye contact, every time they try new food, every attempt at a new word. The little moments have become very, very big for me, and I don’t think I would have appreciated that without their autism.

 

What's one thing you wish people knew about your kids?

 

That autism is just one of their many stripes. That they feel everything, even if they can’t express it. They know deep love. They never forget a word, so if you’re around them, choose what you say wisely. They are children who love unconditionally. They don’t see differences in race, or religion, or sexual orientation—they just see people—especially people who are kind. It’s a gift we all should have.

 

What are your favorite apps? What are Campbell’s and Eli’s favorites?

 

My daughter loves ABC Mouse as it gears academic content toward her individual needs. My son isn’t much into media. Just give him outdoor play any day.

 

This sounds silly, but Instagram has become my favorite app because of the ability to search and follow hashtags like #autismmom or #specialneedspareting. I didn’t know a single person walking the same road until I delved into social media. I have found great comfort, even online, in connecting with people who can say “I get it” instead of “I can’t imagine.”

 

The day my daughter was diagnosed with autism, I opened a private Instagram account for just me. I used it as a private journal, as a means to write down my truth. It’s raw, and real, and often difficult to read as it shows a woman walking a really challenging road.

 

When I started my website, I made that same account public and left it completely unedited because I believe it’s important to give a glimpse of the gritty, not just pretty, parts of parenting. It’s saved my life to have that kind of release, and now it’s brought me an online community of women and mothers who understand. There’s no greater gift than that.

 

Where is your family's happy place?

 

The library! My kids love to read. Also, anything outdoors. From a pool to a mud puddle, my kids are happiest when they can explore. I’ve found with autism that sometimes big excursions bring too many expectations, so often you’ll just find us loving through the little moments.

 

How do you find time for self-care?

 

Self-care is a must. It saved me during the diagnosis days and it saves me daily. I have a really supportive husband who always encourages me to go and decompress, but I think it’s important to note that self-care isn’t always manicures and Moms Nights Out. For me, it’s sleeping in on a Sunday. Trying a new coffee creamer. Watching horrible reality TV. Cleaning out a junk drawer. Self-care needs to come in small, manageable ways too, or otherwise, it’ll never get done.

 

Once a week I like to order in food and eat it in bed. Junk food and junk TV speak to my soul. I also decompress by writing. I still use my Instagram page as my journal and write as if no one is watching. Wandering Target alone with a Starbucks in hand is also a steadfast solution for stress.

 

Who are 3 of your favorite moms to follow on Instagram?

 

Glennon Doyle—she tells us “we can do hard things” and I believe her. Her message of grit and inclusion is inspiring.

 

Nora McInerny—she is a living, breathing example of what it means to overcome after tragedy (her husband died very suddenly at a young age, leaving her to raise their toddler alone). She keeps things exceptionally real and honest, and that’s the kind of woman I’ll follow into any battle.

 

Mary Susan McConnell—Mary Susan CHOSE to be a special needs mom, adopting a medically complex little girl from another country. She has a beautiful podcast called, The Mama Bear Podcast, where she features special needs mothers sharing the pitfalls and peaks of parenting. Her love for her own daughter and her fight to make every life matter has made me one of her biggest fans.

 

What 5 words best describe you?

Authentic, empathetic, bold, challenging, driven

 

What advice would you give a new special needs mom?

 

Beginnings are always scary because they’re filled with the unknown, but consider this: the diagnosis is the end of your wondering. They’ve given your child a label, and it feels frightening and unfair, but it’s also a bookend. And here’s how you reclaim your power: you remember that no one—not a psychologist, or speech therapist, or developmental pediatrician—can tell you who your child is. Sure, they have a special need, but you are the keeper of their stories and secrets. You know every haircut and cut tooth. You have the privilege of holding their history, and shaping their future. So don’t let one label define all the wonderful things your child has been and will become.

 

Also, feel it all. Give yourself permission to grieve. Because we can grieve and still believe. We can accept and still be angry. We are special mothers for this one special reason: we bend, we do not break.

 

So meet your day wherever you’re at and know that your child will progress—and so will you.

 

 

Carissa Tozzi