Tell us a little bit about yourself… What’s your story?
My name is Sheila Ellenberger. I met my husband, Matt, while attending Shenandoah University and we just celebrated our 24th wedding anniversary this year. We have three incredible children: Alauren (21), Madelyn (19), and Riley (15). All of our children were born in Virginia and some of our fondest memories were made there. In 2009, we moved to a small rural town in Iowa. We were surrounded by cornfields, a downtown square, and bandstand that could make a Hallmark movie jealous, but we had snow on the ground for up to four months at at time. So, in 2012, we moved to South Florida, and the saying around here is, “I live where you vacation.” I have coconut palms in my backyard and I’m just a short drive to the beach. This may sound idyllic, but our life is far from that.
My son, Riley, is the reason I’m here. When my son was seven months old he started having seizures called infantile spasms. Once you see one – you’ll never forget it. Two weeks later, after many tests, Riley was diagnosed with tuberous sclerosis complex and epilepsy. For the first six years after his diagnosis, things were manageable, even though he was still having complex partial seizures.
Riley was a beautiful, mild-mannered child and did well in kindergarten. We had been warned of autism and the possible challenging behaviors that often accompanied tuberous sclerosis complex. Back then, we considered ourselves lucky.
Then the summer before Riley turned seven, something changed. His behaviors worsened and first grade was difficult for him. Riley was then diagnosed with autism, ADHD, OCD, and severe anxiety. It has been a long battle since.
In 2009, when Riley was nine years old, he had brain surgery to remove most of his left temporal lobe. His malformed left hippocampus was also removed. I guess you could say it was a success because his seizures dramatically improved but once again, his behaviors worsened. Riley has no impulse control with poor emotional regulation; and that’s a recipe for disaster. Riley has meltdowns that cause him to act aggressive and he struggles on a daily basis with his moods. His behaviors in the home and out in public are intense. These outbursts would be viewed as extreme by any facet of society. To add salt to the wound, Riley was diagnosed with type 1 diabetes in 2013. I cried for two days after that diagnosis. I’m Riley’s full time caregiver and to say that I’m exhausted is an understatement. Riley’s battles seem insurmountable but as a family we try our best to encourage him with hope that one day things will get better.
What is a brand or product you use with your child that helps him /her learn, grow, and belong?
We use the brands Crayola and Artist’s Loft every day. My son loves art and is extremely fond of these two brands in particular.
What’s your best advice for someone on the caregiver’s journey?!
I’m learning the hard way to be honest. I have a tendency to push myself to unnatural limits, but I always pay a price. My best advice would be to take care of yourself before extreme exhaustion or depression sets in. One flaw of mine is that I feel immense guilt when I do happen to give myself a break, but I’m trying my best to push through that negative mind trap. As caregivers, we have to stay healthy, strong, and positive.
We want you to share how to use poetry along with your son’s painting skills to practice self-care and de-stress. What do you write about? Why do you like writing? How does it help you and how does the painting help Riley?
Poetry helps me make sense of my world, which seems very chaotic and out of control right now. I don’t talk to many people about Riley’s issues, especially when it comes to his autism and mental health. Most people just wouldn’t ‘get it’, but I felt an innate desire to write my thoughts down. I use poetry as the vehicle to talk about troubling events – it lightens the extremeness of it all but still conveys my truths.
Riley has been painting since he could hold a paint brush, crayon, or any other art medium. He is incredibly creative and imaginative. Riley doesn’t understand the contents of my writings – he just knows that his artwork is shared, and that makes him very happy.
Riley’s challenges are cumbersome. When I’m able to write something down that has a ‘flow’ and match it to one of Riley’s art pieces, something magical happens. My son’s artwork seems to comes alive. Riley’s autism and crushing anxiety keep him away from the world and at the same time, I’m kept from the world.
I created my blog, thetapehouseblog.com, to feel like I take part in something bigger. As my writings evolved, I realized that we have an especially unique story to tell. To have the potential to create something beautiful out of something grievous, reminds me of Isaiah 61:3 from the Bible: “He makes beauty out of ashes.”
Why do you think the mission of Springible is so important?
I have a tendency to get lost in my parent and caregiver roles. Because of Riley’s disabling behaviors, our world is very small right now and it can be very isolating. A community like Springible helps me feel like I’m not so alone in this journey and that’s a very uplifting feeling.
– Sheila Ellenberger, Springible Contributor