Four Things Constantly in the Back of My Mind…and I Wish You’d Ask About Them
1. Give Credit Where Credit is Due
I have a seven-year-old boy who can recite the alphabet backward faster than some can forwards. He can name the planets and dwarf planets in order of their distance from the sun. He will tell you how many sides are on a pentagon, hexagon, heptagon, octagon, nonagon, decagon, etc.. He will still recite a poem from a show he watched as a toddler….one that he has not heard in years.
Yet, other times, I have to beg for him to say “goodnight.” When asked to point at the circle or draw a square he may or may not respond. Just when you think he has not paid attention to anything around him for the last hour, he will repeat something that was said.
I’m not implying that he is gifted or anything along those lines. I mention it because he is easily written off sometimes. Carson has autism, but although he is different, it does not mean his path is any less important. Being an advocate without getting emotional is hard, and some days I know I miss the mark.
I also know that adults and other kids mean well, but I struggle when they don’t even attempt to let him show his potential. There are times that even his four-year-old little sister will speak for him, or not wait for him to respond. It’s hard to explain to her that we need to try at least. We need always to try to include him, talk to him, ask him, and even though he may ignore us or not respond appropriately, we ALWAYS try.
2. Trying to Predict the Future
Numerous times people have asked us what we think the future will be for Carson. Will he make it through school? Will he ever have a job? Will he be independent? The short answer: yes, no, I don’t know…trust me we think about it ALL THE TIME.
Long answer: We are cautiously optimistic that Carson will be able to learn to fit in socially. We have hopes that he will be able to finish school and get a job that interests him. As he gets older and grows and learns, I hope that his differences allow him to continue to be unique without hindering his ability to fit in. With that being said, we also try to plan for the other possibilities.
When we moved, we chose a house that can be remodeled down the road. If needed, we can create a space that would feel like a separate adult living area, but would still be connected to us, and part of our home. We have tried to start re-envisioning our budget and retirement plans down the road to include three adults, not just two. The hardest part of planning: not having a crystal ball.
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3. Who Will Help Him?
I have tried to stop my thoughts many times on this topic, but they always creep back in. When thinking about Carson’s future, I try to remember that there are many things that upset me, not him. It makes me feel selfish when I try to picture if he could ever have a family of his own. I get a little ashamed of myself when I wonder if he will ever participate and socialize with others. Those are the things I wish for him, but if he is content in being who he is, I need to learn how to not feel a loss for him.
I also have anxieties that I haven’t yet been able to discuss out loud. The first is my fear of his young adult life. This is magnified by all of the horror stories of children getting bullied, beat on, or even harming themselves due to pressure from others. I try to remind myself that we have a small, caring community and that his little sister is developing into quite the protector. Having his sister Hailey in his corner eases my worry for his safety but brings a whole separate issue to the front of my mind. If Carson is unable to be independent, what happens to him when my husband and I are gone?
Does his sister realize that she will always need to be there? Is it fair to assume that he will always have a home with her…no matter how that alters her plans in life? Am I selfish to assume she will take care of him if need be? Or, am I actually not giving her enough credit when I assume it may bother her to fall into the role of caretaker? I worry that his sister isn’t getting a “fair deal.” I am hopeful that her love for him will ensure that he is always taken care of when I am gone.
4. Accepting Our Atypical World
If I were to have to sum it all up: Carson is just Carson. He’s happy, loving, smart, and loved by many. As I said before, I have hope…my husband Paul and I both have HOPE. I hope that he never sees himself as being less because he is different. I hope that he is never made to feel that he doesn’t belong because he does things differently.
I may wish for so many great things for him and fear so many others…but as long as he and his sister continue to be happy and healthy, that is all that truly matters at the end of the day. In the last few years having Carson has given me such a great lesson on what is truly important. He has taught me to be patient, be kind, and that there is always a reason to laugh or smile.
Jillian Sommerfield is a 36-year-old mom who works full time and loves being a parent. She grew up in the same small town she now lives in and says she is spoiled with the fact that she and her husband both have big, helpful, loving families. She describes herself as a social butterfly that with age has become the gal that craves wine, a book, and a hot bath
This article was featured in Issue 84 – The Journey to Good Health and Well-Being