As a parent with a special needs child, I have walked a path similar to other parents. The surprise, sadness and acceptance of diagnoses: wading through a complex journey of medical care, specialists, special education and more. I have developed advocacy skills I never thought I had; found options for my son even in the face of being told, no that is impossible. I know deep in my heart that I am my son’s best advocate.
The only catch was that as I took such great care of my son, I forgot to take good care of me. Self care isn’t selfish, but necessary for survival, let alone thriving. There is an often repeated saying when on an airplane; “if the emergency oxygen masks come down, put your own mask on before putting on your loved ones.” One of the first things I learned in self-care was finding a community of parents with similar issues to share my concerns, to vent and even laugh. Knowing I was not all alone was my first tentative step in finding me. I found wonderful people in the strangest ways and in odd places. I decided not to cancel going to a writing workshop when my son was first hospitalized. For several weeks, I found a safe place to express myself in words. I also found women whose children with special needs had grown up. It didn’t matter what I wrote about, just putting words on the page was therapeutic. The Internet and Social Media in particular keeps me connected with others. I found other parents via Facebook, Twitter and websites who shared their family journeys. I learn from their challenges and successes and commiserate on those difficult days. For me, when the going is particularly tough, I especially have deep laughter. The kind of humor that reminds me that I am human, that life can be difficult but also a joy. I picked up my knitting needles again to do something with my hands. Knitting for me is very therapeutic and a great time filler for all those long waits in waiting rooms.Three years ago, my son and I were receiving therapeutic behavioral services- support to help our relationship and to help better understand and manage my son’s behavior. Probably the most important thing the TBS worker shared with me was a simple suggestion, “don’t forget to breathe.” With all the stress, the need to organize, to juggle work and home, I tended to breathe very shallowly and not very often. At times, it felt like my shoulders were permanently attached to my ears. Remembering to breathe helped me to take a mini time out to reduce stress and to refocus.
I also have learned that choosing what I never thought I could do was freeing. Two years ago, it became very clear that my son’s needs were well beyond a day school program. He also needed more structure and boundaries to redirect his behavior than I could provide. I was sinking fast and I finally had to have him placed in residential treatment. Mind you this has been recommended to me by specialists, friends and family for almost two years. Saying yes to what I thought would be the worst possible, turned into one of the best things for both my son and I. He is developing necessary skills to function and thrive. I have had the space to rest, recover and rejuvenate. Not every parent with a child with special needs may have to make this kind of choice, but there may be other “I couldn’t possibly make that decision” in store. As my son and I are living apart, we continue with therapy, visits and phone calls. We are growing together, reestablishing connections and learning better ways to relate.
Pierrette Mimi Poinsett MD is a mom of a teenage son with auditory processing disorder and special mental health care needs. Most days she leaves her amazon advocate cape safe in her closet. Her blog is The Snapdiva Returns: http://www.snapdiva.blogspot.com
My Favorite Blogs
Hartley’s Life with Three Boys- The Emotional Journey of raising 3 Boys, dealing with SPD, Autism, Bipolar, Adoption, Marriage and while trying to keep my Sanity and sense of Humor
Need a Laugh, Humor for Parents with Children with Special Needs- list by Terri Mauro, about.com Special Needs Children Guide
Squidalicious- The Adventures of Leo and his Potty Mouthed Mom, Parenting, Autism, Ipods and Geekery Visit Squidalicious