It seems that my son, Riley (who has autism), has been born into a perpetual season of loneliness. His difficulty to communicate and his struggle to form normal social relationships has left him consistently feeling disconnected from our family and our community.
As I’ve thought more about the subject of loneliness over time, I’ve realized that his loneliness is my loneliness. Last summer, I wrote that idea in my journal. At the time I couldn’t put my finger on it, but I now know it to be loneliness. Personally, it’s the sentiment of being present but having your mind stuck in the past. And sometimes, it’s the feeling of remaining, being “stuck behind,” as the main caregiver to Riley.
It’s the thought that you’re missing out on living life as you try undeniably to create the best life for the person you’re taking care of.
It’s being here but wanting to be there.
Most importantly, it’s never the sentiment of someone who doesn’t love, but rather the admission of someone who loves too much.
With that said, I’ve accepted my loneliness. However, I can’t accept the loneliness my son with autism feels everyday. Part of my son’s loneliness stems from not being able to process his emotions. He is sometimes incapable of filtering the world around him. Carl Jung once said, “Loneliness does not come from having no people around you, but from being unable to communicate the things that seem important to you.” This fits Riley’s loneliness perfectly. His autism influences his ability to communicate, and subsequently it impacts his behavior. Riley is continually overwhelmed. My son is also hurting, lacking skills, and he is even capable of unfathomable aggression (property destruction worth thousands of dollars during a mere ten-minute rage because he can’t handle his own anxious racing heart). Physical aggression in the form of innumerable punches that cause my arms to turn an odd blueberry color because he was denied an Easter decoration from Walgreens.
As a teenager, Riley’s meltdowns and rages are no longer small and manageable. When these rages unfortunately happen in public, not one person seems to understand. You will feel utterly invisible. I’ve been punched and attacked for things like not having a toy he was obsessing over, missing his grandmother, feeling sick, having to do schoolwork, not having an iPhone, not having friends, feeling sad, feeling frustrated, feeling bored, feeling worried, and simply feeling. Did I mention feeling? I’ve had my finger broken during a rage because his heart was racing. He rages because he wants Christmas and he loses control because Halloween scares him. He kicks holes in our walls because he doesn’t like the fact that we have to have Thanksgiving before we have Christmas. He rages because there are fireworks in July, and when we talk too loudly during our attempts to have family dinners. It takes gargantuan effort to do the simplest of tasks, and I won’t even touch what it takes to get through simple doctor appointments and dental cleanings.
Riley gets upset if we display too much of any human emotion. Sometimes you have to become like a robot, and that makes you feel sad because you like feeling human. There is also the emotion of loneliness in our reactions to all of this.
What to do?
Where do we go from here?
I’ve shuffled out of countless doctors’ appointments, with my son’s hand in mine, and collapsed with exhaustion in the driver’s seat to silently cry while my son wonders what he did wrong. He’ll ask, “Will this doctor help me?” “Is it my autism, Mom?” I’ve had doctors scold my son in front of me: “Why do you hit your mother?” I’ve had doctors even doubt my claims: “Are you sure? He seems calm now.” And during one doctor’s visit, the doctor claimed that my son was being haunted by my deceased Aunt Barbara Sue. Riley is either too autistic for certain mental health counselors or he’s too “mentally ill” for others.
My son is either not “special needs enough” or he’s “too special needs.”
There’s the other stuff he deals with too, like epilepsy and type 1 diabetes that should always be in the forefront but sometimes take a back seat to his destructive, maladaptive behaviors. Then we get to hear terms such as “too medically complicated” and “group homes.” Riley is cognizant enough to know that there is a big, wonderful world waiting for him, but he is so incredibly impaired that those thoughts crush him. And so he crushes me, he destroys our house, and it’s all but destroyed our family. And yet his smile will make you smile, no matter what. His eyes will make you thank God for the color blue, and Riley will make you wonder why such pain even exists. He will prove to you that unconditional love will overcome.
I’m proof of this; my family is proof of this. I now know that my own silence helped create my isolation. I didn’t talk about his behaviors very much in the beginning. Then, when his behaviors began to escalate, I used simplified language. I tailored my speech to say things like “aggressive tendencies” when I should have been saying, “he’s displaying reactive violence” and “we’re very concerned.” I would sit and wring my hands together and feel this odd sense of shame. And when the extreme behaviors escalated again, when there were no more lines for him to cross, I finally started to break my chains of isolation by talking about it.
I accept that some people will not understand him and I have to not only expect the pitiful stares of judgment but repel them. I also have to pretend that I don’t have superhuman powers to hear what others are thinking. I’m raising my child–with disabling and violent behaviors due to his conditions–on an island.
But I’m not alone.
If you research enough or ask the right questions, you’ll find other caregivers who are in the same place. I feel like we live under rocks. We crave life, we crave sunshine, we desire peace, and we want more than anything for our children to be happy and healthy. My motivation to help Riley is the same vehicle that will also bring me solace. As the mom and main caregiver of my special needs son, I don’t have a great deal of time to sit down and be depressed. I do, however, wake up sad on a number of mornings. Sometimes getting through the day is work, a chore even, but it’s love just the same.
Some days are better than others, but every day begins with choices. What joy can my son experience today? What joy can I experience today?
I’m no stranger to the feelings of being lonely. Look anywhere on the subject and you’ll know that it’s a part of our human condition. But, to be honest, I never expected my son’s autism journey to be so astonishingly lonely. Our loneliness is not contagious and it’s surely nothing to be ashamed of. We have never stopped searching for answers and for help. And on a positive note, for the first time in years, we are finally receiving some support that we hope it will change the course of Riley’s life for the better. I believe that there can be a healthy acceptance of loneliness without the submission of its life sentence.
James Hollis wrote, “Only by embracing loneliness may its tyranny be broken.” We can’t conquer what we do not accept. I know that the answer to my own heartache is the surmountable realization that I must cure my son’s loneliness. We may feel uncomfortable and alone in our caregiver journey, but we must find our own way and remember that we are really not alone. We must repeat to ourselves “this is temporary.”
Say,“this is my now, but it’s not my always.” During my season of solitude, I’ve turned to things like prayer, meditation, and journaling. I confide in my close family members when I need to talk and continue to seek out possible support groups. Some time ago, I compared loneliness to a dull spirit longing to follow the ones at peace.
To be at peace, what a beautiful thought.
Despite my wavering emotions, I have the belief and understanding that we will depart this season of loneliness if we are patient and hold onto our hope.
– Sheila Ellenberger, Springible Contributor