A Caregiver’s Perspective: Keith and Jana’s Story

A Caregiver's Perspective: Keith and Jana’s Story
Posted on Fri 20 Aug 2021

A Caregiver's Perspective: Keith and Jana’s Story

We love showcasing different personal stories, perspectives, and aspects of the cerebral palsy community. Today, we’re featuring a Q&A with Jana Wagner about her experiences as a caregiver for her adult brother, Keith. You can find Jana on Instagram.

You're a caregiver for your brother, Keith, who has cerebral palsy. Keith, we want to know: what do you love? What makes you happy? What are your favorite things to do? What do you wish people knew about having cerebral palsy?
Keith loves being around people. Although he can’t respond or communicate, he loves listening and watching others around him. He is happiest in familiar environments such as our home, with family, or places in the community. He really enjoys fun lights, balloons and colorful movies or shows. His most favorite part of his day is sitting outside watching the trees. 

Please tell us about yourself, Jana. What drives and motivates you the most? What makes you happy? What do you love to do?
I recently graduated with my masters in child development with a concentration in infancy and trauma-informed practice. I have accepted a full-time developmental therapy position where I will be running a therapeutic preschool program, while also working one on one with babies and toddlers in Illinois’ early intervention program. I am most excited to be one of the first faces a family sees while beginning their therapy journey, whether it’s just for a few months or years.

I look forward to being an advocate for the family and their child in whatever way I can. While working in a state-run program, I feel as though I will be able to get a better understanding of the resources that are offered and hopefully push for more positive change. 

My brother, Keith, has definitely motivated me the most throughout my entire life, but specifically my career choices. I grew up in therapy and doctors’ offices, his classrooms, and school events. I was always around his peers, who I called my friends. Keith’s smiling face makes me the happiest and proudest sister! I also love to travel and spend time on the lake with friends and family. 

What are the most challenging aspects of being a caregiver?
I would have to say missing out on things that others my age may be doing. It’s challenging always having to find a sitter/caregiver if I want to do something outside of the home. Things that are planned last minute are hard for me to get to.

I also feel like it’s hard to connect with other caregivers in the community or in my inner circle, which is why I am so thankful for those I have met and communicated with via Instagram. Another very challenging aspect of caregiving has been managing state funding, health insurance, state resources, doctors appts and meds.

I feel like I’m starting to find my groove after being in this role for roughly seven years. Advocating is SO draining, but SO worth it. I hope to make these things easier for families one day… it shouldn’t be so hard to receive funding or support that is NECESSARY. 

What do you wish people knew about what it's like to be a caregiver? What supports are most crucial to you as a caregiver?
The support of my family and friends has been most crucial to me, but also Keith’s team of professionals. Finding doctors and therapists that actually listen and go the extra mile to see Keith as a person with real needs rather than just a diagnosis has been extremely helpful.

I wish people knew what actually goes on behind the scenes of being a caregiver — so then people may see how unaccepting the world can be at times. 

How do your studies dovetail with your role as a caregiver?
I knew I always wanted to work with individuals with special needs but it wasn’t until I became Keith’s primary caregiver that I realized I really wanted to work with the entire family. Over the past few years, I have been able to reflect on my childhood and see the impact (both good and challenging) growing up with a sibling with special needs had on me as a person. Including the entire family in therapy sessions can be SO beneficial for everyone involved. 

Is there anything else you'd like to share with us?
I am beyond excited to share my experience as a sibling as well as my professional knowledge while working with families every day. I am so thankful I get to be a part of a state program that truly promotes parent coaching and parent involvement into every therapy session.

Stepping up to raise funds and awareness for cerebral palsy research.

Professor Iona Novak's answers another question from our recent webinar with her. Today's inquiry centers on technological advancements for activities of daily living.