top of page

Tessa: Defying Boxes, Challenging Expectations

Writer's picture: Misty Gray KluckMisty Gray Kluck

I just had a revelation about Tessa—an epiphany, if you will. Tessa is like one of those sweet and sour candies—sweet one moment and keeping me on my toes the next. I've always known she had something extra beyond Down syndrome. When we attended local Down syndrome picnics and playgroups, I noticed something different. Other kids with Down syndrome could sit and play a game, focus on a clown at a picnic, or roll a ball back and forth with a friend. But then there was Tessa.


She kept me on my toes more times than not. If we were out in the community and she heard a loud pop, she would completely lose it—screaming as if from the depths of hell. Sometimes, she would literally climb my head like a monkey or bite my neck so hard it would leave deep bruises. My arms, neck, and even my cheeks were often black and blue, making it look like I was being abused. While the Down syndrome group would sit down to watch a magic show, my daughter was already halfway to the nearest creek, stripping her clothes off in the process.

 

She was the sweetest little baby, so incredibly smart, but there was something else. It was as if there was an underlying sense of communication between us. I could feel her, even when she seemed stuck in her own head. When she bit or hit me, I knew she was scared or overwhelmed, unable to process her emotions. I knew there was more to it—she wasn’t like the others. My heart ached as I compared her to her peers, even though I knew I wasn’t supposed to. As much as I loved her, I felt like I was failing her because she wasn’t just behind in emotional growth—she was in an entirely different place.

 

My own struggles played into this. Unbeknownst to me at the time, I was emotionally immature, carrying a lifetime of trauma known as CPTSD—a hot mess express. My responses to Tessa were never consistent. I was full of anxiety, feeling broken, unloved, and disposable. How could I possibly be the right mother for her? How could I teach her to control her emotions when I couldn’t control my own? I had already failed my older daughter, leaving her just as broken as me. Now, I feared I was going to break another child.

 

With Tessa, I was constantly on edge, bracing for the next meltdown. Waiting for her to hit another kid. Waiting for the screech from hell. And when she did, I was consumed with worry—about how people would judge her, how they would judge me. My anxiety mirrored hers, and instead of calming her, I met her in that anxious, frantic space. We were quite the pair.

 

The Search for Answers

 

I’ve always turned to Google in times of crisis. When my late husband was diagnosed with cancer, I scoured medical reports for answers the doctors wouldn’t tell me. When I received Tessa’s prenatal Down syndrome diagnosis, I googled obsessively for hope. And when I started noticing that her behaviors and growth were different from most children with Down syndrome, I googled again.


That’s when I found out I wasn’t alone. There were other parents like me, children like Tessa. Then I discovered Applied Behavior Analysis (ABA)—a therapy that wasn’t available to her unless she had an autism diagnosis. I fought tooth and nail for her to be evaluated. I cried on the phone with insurance companies, demanding to know why a life-changing therapy was withheld from children like her.

 

Then, I looked at the autism checklist and realized that every single item described Tessa—with a twist. She was social and empathetic, unlike the typical autism profile. But I knew what I needed to do. I strapped on my big girl panties and fought for her to be tested. Eventually, she was diagnosed with autism. That diagnosis unlocked so many doors—unlimited speech therapy instead of 30 sessions per year, unlimited occupational therapy, and, finally, access to ABA.

 

For years, my husband and I sacrificed everything. No vacations, minimal social life, little self-care. We spent $2,000 a month on therapies, and I spent three to six hours a day driving her from one appointment to the next, all while running a small home business. I worked in coffee shops, therapy waiting rooms, even hospital corridors. There was no time for myself. Holding a traditional job was impossible. I don’t know how single parents with a child with developmental disabilities manage. They have to choose between providing for their child or working to survive.

 

Jason and I did everything we could for Tessa. Even after he passed from lung cancer, his former boss kept his promise to help. To this day, I continue to push Tessa forward. Only recently did I pull her from outside speech and OT, realizing she had plateaued and needed something more specialized.

 

The Weight of Expectations

 

Tessa has worked so hard. I’ve put her through all of this to give her the best shot at independence. My childhood was unstable—I had no secure home, no steady parental figures. I know what it’s like to feel unwanted, and I refuse to let that happen to Tessa.

 

But society has expectations. I see it in how people react when Tessa “pops” in public. The winces. The subtle movements away. The invitations that never come. The betrayal. And now, because of her progress, she is held to a different standard. Other children with disabilities around her act out, and people ignore it. They expect it. But when Tessa does the same, she is scolded.


She sees it too. She watches how other kids with disabilities act out and get what they want—whether it’s attention, indulgence, or a response. She mimics them, thinking that’s how to navigate the world. But unlike them, she is corrected. I have unintentionally set my child up for pain.

 

She is currently in a life skills classroom at school—a classroom for children with visible behaviors. But some of her best buddies, children with “unseen” behaviors, are in another class. Why? Because Tessa acts out, and her friends do not. Even though I’ve seen those same friends take from Tessa, tease her, leave her out. But when Tessa reacts? She’s the problem.

 

Seeing Beyond the Label

 

These kids are more than their disabilities. Yet, society insists on keeping them in a box. The world wants to say, “You shouldn’t have to change to be accepted.” But the reality is harsh. Tell that to the man who was beaten to death by police because he was scared and misunderstood. Tell that to the adult tied to a hospital bed and drugged because no one took the time to understand him. Tell that to the mother who can’t go to church because there’s no place for her child.

 

I fought for Tessa to fit into society’s expectations, but now she fits into neither box—too independent for one, not independent enough for another. She is stuck in between. Just like me.

 

Tessa is here. These kids are here. They are kids first, their disabilities last. If we want them to succeed, we need to change the way we see them. We need to stop lowering expectations for some while raising them for others. We need to stop defining them by what they can or cannot do. And most of all, we need to give them the opportunity to rise to the occasion.

 

Tessa will rise. She always has. And I will make sure the world sees her for who she truly is.

 

43 views0 comments

Comments


Work and Play Special Needs Resource Center Inc

444 N Hewitt Rd, Ypsilanti, MI 48197
Phone:  (734) 780-6795

amazon-wishlist-button.jpg
flipgive (1).png

Join the Newsletter

Don't miss out on disability resourses, services or opportunities!!

Thanks for submitting!

©2024 by Dunlavey Solutions

Work and Play Special Needs Resource Center Inc is a 501(c)(3) nonprofit organization, EIN 93-2226357. Donations are tax-deductible.

bottom of page