For this month’s Profiles of Care, I’d like to introduce you to Dallas-based author and illustrator, Jordan Burk. I was first introduced to Jordan when he visited Catherine’s school. She absolutely loves his children’s book series. Jordan is making such an impact on both children and adults with his stories of inclusion and awareness for people with special needs. I’m truly excited to share his story and the wonderful work he’s doing.

Lillian

Jordan, please tell us a little about your journey.

For 14 years my parents and I took care of my Uncle Kelly who had Down syndrome. When he moved to Dallas he became a very important part of my life. For over 50 years Kelly lived in a very small West Texas town, and I wanted to enjoy all that a larger city had to offer. So my friends and I had fun taking him to places to eat, to the movies, the mall, the zoo, the duck pond and so much more. During these outings he became quite the connoisseur of cheeseburgers!

Can you tell us more about your time as a caregiver?

Kelly was non-verbal and needed help with basic daily activities such as choosing his clothes, getting ready for the day brushing his teeth, he was unable to prepare his meals, but could feed himself. I knew he was finished when he shared his food with his Dalmatian, Travers. Kelly spent most of his day drinking coffee and cheering on game shows. He quickly felt at home and would go outside and watch the squirrels and ride his stationary bike. Kelly was very easy to take care of and very appreciative of everything that was done for him.

Do you remember any challenges you faced as a caregiver and how you overcame it?

In the beginning scheduling a sitter to come to our home to watch Kelly for an evening or short period of time could be difficult. I wanted someone who felt comfortable around Kelly. My family and friends were always willing to help. In the last year of his life there were many challenges because he began having seizures. He was unable to walk and required a wheelchair, unable to feed himself, could not use the restroom by himself, dress himself and basically became dependent for all of his daily needs. But in the midst of all the changes, Kelly never lost his joy or ability to smile.

What have you learned most as a caregiver?

Patience was the greatest lesson I learned. Kelly was very slow moving and unaware of time. I often thought time was going backwards. If I tried to hurry him, he shut down and refused to acknowledge any request or me. His behavior was shaking his head “No”, putting his finger on his nose showing he was unhappy. In spite of negative behavior, I always knew Kelly’s life mattered and he needed to be loved, valued and treated with respect.

What advice would you give to new caregivers?

My advice would be to make sure to take care of yourself: eating, getting enough sleep. Also, develop a strong support system of friends and family who can help you. Learning to laugh and enjoy those treasured moments, and those not so treasured moments My family stayed for 10 days with Kelly while my parents and I went to Disneyland. It was the break we needed to do continue to take care of Kelly when he when he was requiring 24/7 care in that last year.

What sparked the idea to create the Kelly series?

I was inspired to write the Kelly stories after seeing how people responded to him and his childlike behavior. Kelly carried a stuffed animal which made others curious given he was in his 60’s. My family and I were always very open and willing to explain Down syndrome. Kelly meant so much to me that I wanted the typical child to experience the joy of someone with Down syndrome or other disabilities. My life has been impacted because of Kelly’s unconditional love. Kelly needed me, but I also needed him in my life. His ability to love, show kindness, never judging, finding joy in the little things like a good ol’ cheeseburger.

What is the Kelly series?

The Kelly series is going to be a collection of fully illustrated books aimed at children to teach them about Down syndrome and how to be kind to one another. Every book has a Q&A in the back of the book with questions that most kids would ask about Down syndrome. We have found the Q&A to be a valuable tool. Also, there is a free song download with every book. The second book will be released in the spring of 2020.

What is your goal with the Kelly series?

My goal for the Kelly Project is not only books but to carry this message into schools, private events, hospitals and resource fairs. Included in vision is a desire to build a community of Kelly and Kelso supporters to encourage and undergird one another. I have already witnessed when people came together to help one another; it is powerful.

What are some of the lessons that are taught through Kelly and Kelso?

The lesson in the first book is about teamwork and including those that are different. It encourages children to be bold in their kindness. In the second book there are many issues that children face. Bullying, loss, sadness and hopelessness are addressed. In this book Kelly chose to find happiness in difficult situations; therefore, being an example for the reader.

Why is sharing the stories of Kelly important to you?

It is important to me to keep Kelly’s legacy alive because he was such a huge part of my life. It still to this day amazes me that my uncle, a man who grew up in a town 400, born with a disability, could impact so many people worldwide through his message of kindness, love and acceptance.

What can be found on kellyandkelso.com?

You will find the inspiration behind the Kelly book, videos and stories of the “real” Kelly, fun games and activities. As well as my online shop, which includes books, stuffed animal, pins, buttons and shirts. My shirts are made from a company in Ohio that hires adults with Downs syndrome offering them jobs and vocational training.

How can our followers support the Kelly stories?

You can support the Kelly and Kelso stories by purchasing books and products. Also, share on social media: instagram, facebook, and twitter. Share your favorite adventures with your Kelso stuffed animal, stories and pictures, too. There is a place where you can make a donation. The money goes to buy books, arts and crafts supplies, which will be given to children in hospitals and schools.

Our followers are caregivers, health professionals, educators and supporters of caregivers. Is there anything more you would like to share with our followers?

Every life matters. Everyone deserves to be seen. Everyone deserves respect. Everyone deserves kindness, to be valued and to be loved.