I can’t stop looking at one announcement which was about a little sister of Hayden’s close friend from kindergarten. When I gaze at the picture of her, I feel like an entire lifetime has passed. She’s off to college in the Fall. Where did the time go? I remember her tagging along with Hayden and her brother years ago, while the boys played on the playground or looked forward to swim lessons in the summer, that eventually led to them spending time on the local lake in our area. They were all so young, but then again, Mark and I were young too.
This year, receiving those graduation announcements felt different. At first, I didn’t understand why, and then it dawned on me. Broden was supposed to graduate this year. He was the same age as Hayden’s friend’s little sister. I’ll admit, since Broden has not been diploma tracked, and we have been focusing on life skills and communicating wants and needs, I sort of blocked out what should be and started focusing on what is necessary for Broden’s path. One evening, after realizing that this was supposed to be the year, I started trying to picture Broden in a cap and gown, once he had come downstairs to eat his dinner. As he was shoving strawberries in his mouth, I thought, “I live in a different world. The world I live in is so unique, I’ve lost all sense of time in what other people are experiencing with typical children Broden’s age.”
While many of my friends have shopped for college dorm supplies or figuring out the logistics of sending two kids to college in two different locations, Mark and I have prepared for a court appearance to attain guardianship of Broden, since he turned 18 a few months ago. It was a defining moment in our lives, but not an announcement that was mailed to friends to celebrate. I wouldn’t have called that moment something to celebrate. It was a heavy, somber moment, that came with the realization that Broden will continue to be cared for by us until we are no longer able to.
The next steps in life are very subjective. It means different things to different families, and this concept is real for those who are raising young adults who are not able to live independently. We set off on a different journey that leads us farther and farther away from others who have adult children who can live independently. With our guardianship paperwork approved, Mark and I are seen as competent to continue to care for our son. While stating that seems demeaning at best, Mark and I have focused on the fact that Broden will get to be a part of us writing our next chapter. He will continue to shape what our life will look like and the life decisions we continue to make.
During the guardianship court hearing, our lawyer asked me, “What do you do for a living?” The answer was not planned, but made it evident that Broden impacts my life in a way that is unmatched to others in our family, “What I do has always been shaped around Broden’s needs. I’ve never felt I could work full time because I’ve always been the one who needs to be available to provide support for Broden. The only option for me is to be part time adjunct faculty. I make it clear that I can only teach courses when Broden is receiving services. If his services are taken away, I may have to resign.” Mark helps to lighten the load when he can, but in the end, the responsibility is mine.
The days of playing “what if” are slowly dying off, as the path that we build with Broden drifts farther and farther away from what may seem typical. Getting caught up in the “what if” game leads to regret and bitterness. It leads to jealousy of others who are not on the same path as ours. I learned the game that I used to play in my head took energy away from what the focus should be, and it didn’t allow me to be grateful for what is in my life.
With Mark retiring next year, we’ve decided to build our retirement home and work with a builder to ensure the home will grow with Broden. He will be with us for quite a while and our home should reflect that. Two weeks ago, Mark and I were working with our cabinet builder to design our kitchen and bathrooms. Towards the end of the appointment, he pointed to a bathroom connected to our second master bedroom, “What kind of cabinets do you want in this bathroom?” Mark and I looked at each other, “What would Broden want?” I explained to him that this bathroom would be special because it was for Broden, who happens to have severe autism. As we explained the floorplan and why it was designed for him, the cabinet maker started to smile, “I have two grandchildren with autism. Let’s make this special. What is Broden’s favorite color?” I smiled, “He loves the color blue.” A friendly guide, who works with our custom builder, leaned over and grabbed a beautiful sample of a deep navy-blue color, “Shelly, how about this? Do you think Broden would like this color?” Mark and I gasped, “Yes! That’s it. This will be the color of his cabinets in his bathroom.”
We are learning that every path that is forged is going to be different for every family and each of their children. Many may head off to college to grow more independent and find their way. For some, it may be something else. For Broden, those paths of independence are beyond our control. We will forge a path that is more unique to support his needs, and continue to build our life with him always included. I’ll quote a father who was asked years ago about his thoughts of raising his adult son with severe autism, “I feel so lucky. So many parents are having to say goodbye to their children, knowing that time spent with them will dwindle over the years. But I don’t have to worry about that. I see it as a gift and privilege to be with my son. I get to spend my life with him. Again, I’m so lucky.” This quote resonates with me because it’s true. It’s about perspective. Our path was supposed to include Broden and for that, we are fortunate.
OUR JOURNEY IN CAMO
Shelly Huhtanen is an Army wife stationed at Fort Jackson, SC. She enjoys sharing her experiences of her day-to-day life caring for her son with autism. Shelly authored Giving a Voice to the Silent Many that encompasses many stories of raising a child with autism in the military. She also teaches Public Communication at the University of South Carolina and has contributed to EP Magazine for over 10 years.
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