My favorite question to ask our teenagers in the TM and NMO clinic is “What do you want to be when you grow up?” This provokes a wide array of answers, from teacher to CSI agent to rocket scientist. Helping our teenagers identify how to reach their goals despite their disability is one of my passions.

Occasionally a young patient does not have an answer, and after digging deeper I learn that their hope of being independent from their caregivers has been lost. There is a feeling of anxiety that they will not be able to move away from their parents to go to college or start working. Sometimes the perspective of the teenager affected by TM, AFM, NMO, ADEM, or ON, or even the perspective of the family, is the greatest limiting factor preventing them from reaching their full potential. Their expectations of what life would be have not been met, and they are disillusioned about their future. This mental hurdle is by far the most challenging. When young people buy into the lie that they cannot go to school or work because they have issues with their sight or ambulation, then they cheat themselves and those around them out of reaching their full potential.

After diagnosis, the trajectory of the teenager’s life is altered. How much it is altered depends on factors like the severity of the illness, its impact on daily activities, the degree of recovery, and psychosocial support. The child’s dependence on their caregivers and others increases and their independence decreases. Hopefully this is for a short period of time, and as treatment interventions and rehabilitation are put into place the child resumes their previous trajectory. When that doesn’t happen we assess for various barriers affecting independence and look for solutions. It is possible to overcome the mental barriers, but it requires getting help from others and a willingness to take a chance. There will be many trials, but it is important to remember that many times success is defined by our ability to overcome challenges and push through; it is the journey, not the destination that makes us.

We want to inspire our young patients to DREAM BIG! I tell them there are politicians who are in wheel chairs running entire states and there are chefs that are blind. I explain that their medical condition is not the driving force in their life, just a challenge. We hope to help them chase after their dreams and break down the obstacles into manageable steps to ultimately be the best they can be.

This is the first blog in the series on Transition of Care. Audrey Ayres, RN, BSN, MSCN is a clinical nurse at University of Texas Southwestern Department of Neuro-immunology. She was recently award the 2014 Excellence in Nursing Award by the Dallas magazine. Audrey provides care for adult and pediatric patients with Multiple Sclerosis, NMO, TM, AFM, ADEM and Limbic Encephalitis.  She is also the primary nurse for the Pediatric Demyelinating Disease Clinic for Children’s Medical Center in Dallas, TX.