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2024-02-01

Autism Journey Resilience and Friendship with Abby Care

By
Kayla Casteel
Community Member
Discover a mom's heartfelt story of navigating her son's autism, the life-changing bonds formed at Abby Care, and the shared triumphs and trials on this path.

He was saying words, mimicking nursery rhymes, and making eye contact–it’s like it started to disappear as fast as it came. 

My son was diagnosed with autism spectrum disorder when he was two and a half years old. It was devastating. I couldn’t even think, nonetheless talk about him for the next year without feeling a lump in my throat. His father and I didn’t even know what autism was. Everything I was reading on the Internet was giving us a scary idea of our future, that this was more than we signed up for. We had been dreaming and expecting a normal parenting experience for the first two years of his life and weren’t ready to give up our ideas of having a “normal” life. Our family and friends were as supportive as they could be, but we felt alone. 

Getting a diagnosis is life-changing. I never had direct contact with anyone who was neurodivergent, so this was a new world and it involved my most precious possession: my son. Until my son's diagnosis, I had found so much identity in my profession–I was dedicated to my career and it gave me a sense of purpose. However, when I found out the skillset it was going to take to get my son the help he needed, I knew I had to shift my priorities. Nothing about my life’s purpose seemed to include me anymore.

Autism is complex, and there are different challenges with each diagnosis. I was struggling to find parents who had similar challenges. I needed a mentor. I was meeting people along the way but hadn’t found that one person I clicked with until my Abby Care orientation, where I met Jo.

I was skeptical of Abby Care at first. Their model seemed too good to be true. Also, I wasn’t sure how I could benefit from Medicaid. I kept thinking I didn’t want to go somewhere and have people feel sorry for me or seem desperate for money. After all, I used to help people with money in my career which seemed to be fading daily. 

At my orientation, we did a short introduction, and Jo went first. She started telling her story and talking about some of her challenges and I thought, “She’s the one I needed!” After orientation, we talked with each other in the parking lot before going home. I remember feeling relief on that drive home like someone had finally understood me. Once I realized I may not have my classes with Jo I asked Abby Care for her number to connect, and the rest is history. 

Jo is on my team. She is MY advocate. We celebrate our wins and sometimes, we cry together realizing the ups and downs of this journey.  We are friends, and I’m forever grateful for Abby Care’s introduction of the two of us.

One of the many things I love about Abby Care is how empowering the staff is. They listen and quickly follow through on processes that need change. It feels like we're all working towards bringing more awareness and help to caregivers who often feel forgotten about like their life dreams and purpose aren’t important anymore after a diagnosis. I feel heard and my opinion feels appreciated here. The team works hard to provide community to anyone who wants it by hosting several free events each month. Most of the events that they host are at places that I’d feel nervous about going to alone, but knowing my community is going to be there with me makes it easier. I don’t have to calculate where every bathroom might be or how I’ll have to explain to an employee who tells me my son needs to wear shoes that putting his shoes on could cause an epic meltdown and result in a negative experience for my family. There is power in numbers and Abby Care has already voiced understanding to the venue before we arrive, so we don’t have to. We can attend these events less stressed knowing the team and our community will be there for us. 

I'm three years into our diagnosis, and I’m realizing one of the beauties of parenting my son is this resilient, supportive, and accepting community that comes with a diagnosis. I didn’t want help, but the truth is, I needed it and still do. The financial aid is helpful, but it’s not just about the money: It’s about being proud of yourself for passing the CNA exam, it’s about contributing to the grocery bill, knowing you’re the best person to care for your child, it’s about meeting a lifelong friend, it’s about having a sense of purpose with a team behind you cheering you on. If you’re on the fence about joining Abby Care, I encourage you to get off, run as fast as you can, and leap over it. Abby Care gave me opportunities when I felt overwhelmed with life that lifted me and made my inner voice say, “Get up girl, everything is going to be okay.”

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