Have a little faith…(I may just do better than you expect)
The other week I received an e-mail from school regarding Sydney and her very rough afternoon. This was certainly not the first time I received such an email and I accept that it will not be the last. I am not entirely sure why, but this time it hit me harder than usual. It was a beautiful day and I remember feeling particularly peaceful at that moment. I read that email and it literally knocked the wind out of me. I have written before about the roller coaster pattern of emotions associated with SMS. One moment things are looking up and the next we are in a difficult place dealing with outrageous behaviors. Sydney’s mood can change quickly and as a result so can mine. Over the years this pattern has taken its toll on me and can make it very difficult to truly relax. My only recourse during these moments is to have a little faith that these episodes will pass.
Sydney has a disability that profoundly impairs her ability to regulate her emotions. She suffers from significant anxiety and impulsive behaviors and this combination can result in some very primitive and dysfunctional episodes that can leave individuals working with her quite overwhelmed. There is a part of me that wants to share the specifics of these incidents but there is also a part of me that desperately wants to protect her dignity and keep some aspects of her life private. I want people to understand SMS and how it affects the interactions these children have with their world but I struggle with my need for people to see Sydney as more than just a collection of outrageous behaviors. Maybe I need more time or maybe I will never share those horrid moments with you, but for now suffice to say that SMS behavioral episodes are very difficult for a parent to see and share.
Sydney completely decompensated that day and the school was left to pick up the pieces. As a mother, it is hard to allow someone else to care for your child during difficult times. You expect to be the one who solves all their problems and protects them from themselves or others when needed. As a parent of a special needs child, you must learn to trust enough in other people and have faith that they can and will manage these difficult episodes. It simply feels too unnatural to sit back and allow someone else to care for your child, however, if I want Sydney to enter into mainstream society then I have to let go and let others do their job. In any event, after reading the email, all I did was wait until Sydney returned home to see for myself how she recovered.
That day I was plagued by feelings of hopelessness (the pity party invitations were being mailed…). I felt that we were destined to be in this awful behavior cycle and I could not see a viable way out. Intellectually, I recognize that she will always have bad days but in those dark moments it is very easy to lose faith and not recognize that they are often followed by good ones as well.
Interestingly, Sydney came home that day and she was all smiles. There was no sign of distress and in fact, she was in an exceptionally pleasant mood. She never mentioned the episode at school. It is unclear whether she lacks the cognitive ability to recall such events or if she actually just forgets about these episodes altogether regardless, she certainly does not dwell on them like her mother. As her mood improved so did mine. I followed Sydney’s lead and the day brightened for us both.
That same evening I heard a song entitled have a little faith by John Hiatt. I have heard this song many times before and it always resonates with me and brings a sense of peace and comfort. I suspect it is mostly meant for couples and is a popular wedding song. However, this time the song took on an entirely different meaning and I realized that these lyrics could contain a conversation that Sydney and I would have if she could effectively communicate her thoughts.
“When the road gets dark
And you can no longer see
Let my love throw a spark
Have a little faith in me”
The reality of SMS is that these “up and down” behaviors are a hallmark of the syndrome. It is extremely difficult to accept and adapt to and I know it causes Sydney tremendous distress. It is also hard to find comfort in your own skin if one minute your emotions are intact and the next they are a shattered mess on the floor. It is this particular aspect of SMS that I find to be the most debilitating and why I focus my energy on funding research to find therapeutic interventions to help alleviate the behavioral component of this complicated syndrome. For more information about our research efforts check out our foundation website at www.smsresearchfoundation.org
Watching my daughter struggle with these erratic behaviors is painful and remaining confident that they will pass is a challenge. But when I see her smile and her warmth return after an unpleasant episode it gives me faith that I can do the same. Because of her I truly believe that there is a light at the end of every tunnel and I am slowly learning to enjoy the light when I see it.
“And when your back’s against the wall
Just turn around and you will see
I will catch your fall
Have a little faith in me”
I have come to realize that together Sydney and I seem to navigate our way through this crazy emotional maze. We are both oblivious to what lies ahead but we seem to have this unspoken trust in one another that we will find the light if we just keep a little faith…