Blog Post

The Caregiver’s Perspective

I am a wearer of many hats: caretaker, advocate, educator, student, friend.

The Caretaker

The first hat. When I began working with Ally, I hadn’t yet realized the variety of roles I would play each day. First and foremost, I am the caretaker, aid, and direct support. I ensure the safety, hygiene, and health of Ally as we venture into the community. Each morning I follow a set schedule. I arrive, meet with Mom to discuss our plan for the day and any changes in mood or schedule, give Ally her daily vitamins, make her lunch, change her into clean clothes if needed, brush her hair, prompt to apply deodorant, and pack the bag of necessities. Ally checks if there’s anything I’ve forgotten, sometimes trying to sneak her favorite tape in, and we’re out the door for the day. “Buckle up!” she reminds me. I hear the window roll down, I crack mine and we’re off.

The Advocate

The hat I am the most passionate to wear…being Ally’s biggest fan, strongest support, and advocate. Advocacy means supporting the interests of Ally with the aim of promoting and protecting her rights and welfare. I am her voice when it’s difficult for Ally to communicate. I am her protector from judgement and unfair treatment. “We are all spinning on the same ball” she says. A reminder that no one is above anyone else. Ally deserves the same opportunities as anyone else.

The Educator

The hardest working hat. Each day is a new opportunity for growth, practice, and learning. “A great day for learning!” Ally says. Our day consists of practice. Practice crossing the street safely, practice kitchen safety when meal prepping for the week, practice navigating the grocery store, practice taking breaks, practice using our quiet voice at the library, practice completing a task. We’ve created a model that works best for Ally when practicing or learning new tasks. I do, you watch. I do, you help. You do, I help. You do, I watch. We use this model daily.

The Student

The unexpected hat. Every day is a new adventure. Some days are A days some are B days. Gina and I developed these terms with Ally’s behavioralist and use them based on Ally’s mood, energy level, social meter to determine what Ally can handle in her schedule each day. No matter how much Gina and I plan and schedule, our day doesn’t go perfectly to plan. It’s one aspect of working with Ally I enjoy most. The unexpected keeps me on my toes, keeps me learning about Ally and myself. Working with Ally has helped me realize what I am most passionate about. Our daily journeys in the world have taught me the importance of using my abilities and voice to help individuals with disabilities. I have learned the importance of educating those who might not know about autism and other disabilities because it truly makes a difference when a helping hand reaches out on a B day.

The Friend

My favorite hat…the most rewarding hat. Ally is kindhearted, determined, loving, charismatic, and beautiful inside and out. She is an amazing artist, she loves listening to Mozart, she enjoys swimming and walking outdoors, and most of all she loves her family. Ally is resilient. She has her ups and downs like everyone else, but she is always quick to bounce back and continue pushing forward. Our friendship is unique and difficult to put into words. We share our love for art and serenity in nature. We love listening to music on a long car-ride with the windows down. The beach holds a special place in both of our hearts. We share a strong will and love for meditation. We enjoy each other’s presence even when completing separate tasks in the same room.

I wear these hats each day with pride. It is imperative I pack them every day. They guarantee Ally’s success while we navigate the world together. Together. WE learn, WE teach, WE love, WE support. There is no I in team. Cliché I know but it truly takes a village. Ally’s village. A village I am proud to be a part of.

As Ally would say, “Party Hats On!”

Written by Emily Bielesz

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