SCHEDULE AN APPOINTMENT
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 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 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 more 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 shallow and not very often. At times, it felt like my shoulders where 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 the 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 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 be 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
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
Visit Hartley’s Life
Need a Laugh, Humor for Parents with Children with Special Needs- list by Terri Mauro, about.com Special Needs Children Guide
Visit Special Children – Need a Laugh
Squidalicious- The Adventures of Leo and his Potty Mouthed Mom, Parenting, Autism, Ipods and Geekery Visit Squidalicious
Your email address will not be published. Required fields are marked *
Save my name, email, and website in this browser for the next time I comment.
With our state-of-the-art, HIPAA compliant video-conferencing system, we are able to bring our services to you, right in the comfort of your own home. All you will need is a desktop computer, laptop computer, or smart phone. We are able to provide an array of different services. For more details (914) 588-8088
The spread of the Coronavirus (COVID-19) has generated understandable concerns in our community. Please be assured that the health, safety, and well-being of our patients, staff members, and their families is our top priority.
We are open and closely monitoring the evolving situation. We have taken additional precautions in accordance with the Centers for Disease Control and Prevention (CDC) to help minimize the spread of this virus, including:
We ask that any patients who feel ill please stay home and monitor their health. If you need to reschedule an appointment, please call us at (914) 588-8088.
As always, thank you for allowing us to assist with your communication needs.
Dr. Nancy L. Datino