As I continue to demystify autism in my writing I feel a sense of peace. It is said that we are all put on this earth for a reason and I strongly feel as though I have found my reason. From the moment Keyan was diagnosed with autism it changed my life in so many ways. I had to listen to what the universe was telling me. By listening and paying close attention I learned instead of always fighting - it’s better to surrender and take the path of least resistance.
For the formative years of Keyan’s life we focused on finding the right therapies, diet, vitamins anything that would fix him. It seemed like forever but in reality before he left daycare I had the big picture of his abilities. When sending him off to school I knew that what he would need the most kind, patient and loving teachers (shadows) to help elevate his learning. Fortunately for us, over the years he has been surrounded by such individuals. So as parents we go from wanting to fix our son to total acceptance of him. For parents living the same reality I tell you it’s a much healthier headspace to live in; for you, your child and other members of the family.
As a family we had to adjust our expectations. In order to be happy, I had to ensure the happiness of my children first. After establishing routines and getting the proper support for our children I felt it was time to take care of our needs outside of the daily grind of work, eat, sleep and care for the children. The turning point came when Keyan was 5 years old. I remember being tired to the core of my being, every muscle ached and every thought was negative. My mind told me to run away but my heart would never allow me to. I would fantasize about what it would be like to escape my life – escape the dark cloud of autism (a disorder that dictated my days and nights). AHA – time away from the children could be achieved with a week’s vacation. I proposed the idea to Kunal who’s swift response was we can’t leave Keyan. I let him know I was going on vacation for a week and the only thing he had to decide was whether or not he would be joining me. I was so desperate to escape. My husband reluctantly jumped on board and we put a team together to care for our children, packed up and went to an all-inclusive in the Dominican Republic for a week. To this day it is one of the best decisions I have ever made. In that one week the heaviness started to leave my body, I connected with my husband on a deeper level and best of all I missed my kids so much that it gave me renewed energy to face the challenges brought on by autism.
In many ways that vacation made it clear to me that it was important that we do things for ourselves. One of the heaviest burdens we carry as parents to a child with special needs is we feel that in those moments we are not caring for our child(ren) then we are taking away from them. Think about it, our children need us so much in their day to day lives how could we selfishly take away from them. The irony is that when we take care of our needs we are mentally, physically and emotionally stronger to care of our children. As parents we sometimes hold on too tight for too long then realize our children can do things we hadn’t given them space to do. Even a special needs child, as they grow, need to be surrounded by individuals outside of the family circle, they need personal space despite loving the hugs and kisses and like everyone else need some alone time. So it is in those moments that parents can take the time to read, exercise, take a long bath, go out for dinner, attend a concert or do whatever their heart’s desire. As our special needs child ages often times we go from being a parent to a caregiver and in that role it is even more vital to not only take time for self-care but ensure there is more time for self-care.
For those of you who have been following my journey you already know that my self-care has come in the form of running. I found running because the stress brought on by raising Keyan was inescapable. At times it felt as though my head would explode with the pressure of being this child’s mom. I could feel myself slipping into a depression and I knew doing so would leave my husband the burden of responsibility ultimately putting his health at risk too. This is how running came into my life – as a means of survival. Although, like everyone else running was hard for me, at first. I thought who the hell do I think I am to think I can run. The very first time I ran or shall I say shuffled a 5
km distance it took me 45 minutes. Still I felt accomplished. As slow as I went all that mattered was that I had time to myself. What followed was a clearer mind better equipped to face what autism dealt me on the daily. Then came the sense of personal accomplishment. My desire to go farther, faster and become stronger while running kicked in over time and I had fallen madly in love with the sport. Once the family was on board and we fit running into our lives I was able to set goals for myself. I had gone from crossing the finish line to sometimes being the first woman to cross the finish line. I wanted to run longer distances, stand on podiums and run the Boston marathon. Running was how I took care of myself. My family reaped the benefits of a happy mama bear who found the balance between taking care of her family and herself too.
I hope this inspires all Mama Bears out there to do what makes their heart sings despite your child,s abilities or disabilities.