Yvonne Whitley doesn’t like to describe her relationship with her adult aged son Charles as caregiving. Although it’s peppered with highs and lows, she sees it as “day-by-day life”. Charles, now a 24-year old who likes Harry Potter, sci-fi, Lord Of The Rings and dancing, began having seizures early in his childhood and after continual searching for answers from several doctors and specialists as well as relocating to North Carolina, he was also diagnosed at 15 on the Autism Spectrum.
Yvonne recognizes that she is doing more daily than would be necessary for a main stream young adult, however she says for their family’s journey, it’s like breathing. All children are different with or without disabilities. When she reflects about their relationship, she says, “Charles and I have a great relationship. Nothing is perfect, but we do pretty good together.” The root of their bond is love and as caregiving may take a lot out of you, Yvonne is quick to say, “but it gives a lot back as well.”
“Just enough was
not going to be good enough.”
Yvonne says that there were struggles, such as being a single parent and the sole advocate, and there were times she wondered how she would get through and if she had the strength to overcome. Yvonne has peace now that this journey has led her to where she is today. “You know, many people who have been around myself and Charles have commented about what a great job I’m doing or how lucky he is to have me as a mother, and I didn’t understand it. I just thought - that’s my son, what else could I do but love him?” When she looks back at pictures or reflects on the life she has had, she said she realizes how wonderful life has been.
Through her caregiving journey, Yvonne has developed a mantra, “Charles has made me better.” Yvonne has had to have more structure, problem solve, be creative/inventive with solutions and learn so much more. Along her road, she decided, “Just enough was not going to be good enough.” She says her reward for all this work is his amazing smile, the daily hugs, his love of music & dance, his zest for life and love of his family. “He makes life so much better. It just wouldn’t be as fun without him. I remember before he was born, my mother wasn’t so physically affectionate, but he broke her out of that. He gave her hugs and demanded them of her through his actions. He changed her irrevocably and without her knowing it, she was all the better for it.” The common denominator of change is the impact Charles and his smile leaves.
Yvonne’s words of wisdom for anyone else in a similar situation is you are the best advocate. Trust your instincts and trust your loved one. If your goal is to make the best life for them as possible, it will direct your path. Many people will offer their opinion and advice on how to handle your particular situations, but you are the final decision maker. If it’s working and they’re growing, then that’s an indicator that you’re doing the right thing. ”I’ve also learned over time that sometimes, I have to just pause and not push”. Lastly, she suggests taking time for yourself. “Sometimes the best part of my day can be my alone time. Whether on a walk or just sitting at home –having “me time”. I don’t get that a lot, but when I do, it’s priceless. It helps me recharge, clear away any doubts, and come up with more creative ideas to help make things better”.
And although Yvonne knows her job of developing him isn’t over –“not by a long shot,” she’s excited about what else he will be able to achieve because he’s always surprising her. She will cherish forever his joyful heart and smile. In all, her caregiving will continue day by day.