What the books don’t tell you…

I can’t remember what I read yesterday, but I can remember the first thing I read about SMS, which was over 5 years ago.  The study I read was basically an overview of the syndrome and listed all the horrific components of the disorder.  It started off by stressing the rarity of the syndrome and how little was really known about it.  It continued with a litany of negative aspects of the syndrome, which included cognitive impairments, developmental delays, self injurious behaviors, ADHD, anxiety disorder, OCD, sensory issues, emotional regulation issues, sleep disorders, AND tantrums…severe ones, and that they require constant one on one attention.  It recommended all the basic interventions such as speech therapy, physical therapy, occupational therapy, behavioral therapy and special education but offered little else in terms of true treatment.  At the very end of the study, hidden in the conclusion section, it said that individuals with SMS had funny and endearing personalities.  That was the only positive remark throughout the entire article.  In fact, at one point in the article there was a sentence that read that this was considered one of the worst genetic syndromes (whatever that means).

I remembered feeling hopeless, terrified, and physically ill after reading this and it took me years to come to terms with it.  I recently looked back at that study and approached it from a different perspective.  Although it did say all those horrific things, it left out some very important information but before I get to that, I would like to share a few additional thoughts.  First, intellectually I know that study was meant to provide a factual perspective of the syndrome and was not meant to coddle the reader or address new parents.  It was meant to explain a very rare disorder and the severity of the affliction.  Therefore, looking back now I completely respect that the study was rather one-dimensional.  It left out the single most important thing about SMS or any syndrome for that matter, the individual itself.  I can see that now, all these years later, but back then I simply could not.  All I remember was that I was faced with the worst nightmare imaginable without a single clue on how to deal with it.

I now realize that there is a wealth of information that the books, articles, and studies don’t tell you.  It is critical material that only time can reveal.  Looking back I wish someone had written that I would find happiness again and that I would laugh again.  It would have been helpful to read that Sydney would be more than a genetic misfit and would actually be an individual with her own unique personality.  But the truth is even if someone wrote that it would have been hard to believe it.  You simply have to experience it for yourself. 

Regarding Sydney, this past year has been a series of accomplishments and disappointments but there has been tremendous growth in certain areas.  We have been experimenting with medications for Sydney to help with her anxiety and self-injurious behaviors and have seen real progress.  We have also noted development with her speech and language.  As a result, a new side of Sydney has emerged; a side not written in any scientific journal or book.  The decrease in anxiety and increase in her ability to communicate has brought a new individual that has introduced herself to me.   She has so much to say and her own unique way of saying it.  She loves to laugh and make others laugh. Of course, the global impairments are still there but they no longer feel so sterile and cold to me anymore.  Her warmth and genuine empathy can disarm anyone who is put off by her limitations.

Moreover, what the books didn’t tell me was that I was going to develop a new set of emotions that would help me live with and make sense of this complex syndrome.  Gone are the old familiar feelings of simply happy or sad and angry or accepting.  They have been replaced with new hybrid feelings. A feeling somewhere between happy and sad, which I describe now as immensely proud but painfully disappointed.  Angry or accepting, I now refer to as full of fury mixed with unwavering hope. 

I will be honest it has been hard to feel pure happiness living with special needs because inevitably the reality of the loss infects the joy.  On the other hand, it is hard to feel angry when on a daily basis I am faced with incredible challenges that have forced me to grow and become a more enlightened individual.  I am grateful for my new perspective on life.   I wish I acquired it without the pain of special needs but regardless, I am enriched for it.  Clearly it would be difficult to describe all that in a journal article and even tougher to convey to those who just received a life altering diagnosis that laughter will enter your lives again.  It’s not a carefree laughter but you do develop a new sense of humor.  You have an incredible ability to laugh at yourself, your circumstances, and find the humor in the quirkiness and uniqueness of your child’s personality.  No doubt you do feel alienated from your non-special needs friends but you begin to build an alliance with a new group of individuals, some who you may never even meet in person.  What is great about this group is although you may not have chosen them as your friends; you will find that what you have is an unspoken bond.  They know this new world of emotions you are experiencing and you never have to explain it.  So when these new friends hear laughter and tears in your voice or see profound disappointed coupled with unconditional love in your eyes, they don’t pity you, they understand you because they have been there too.

I now know that I was never going to find the guidance, answers, or the wisdom in books.  It was going to be from my own experiences and not from scientific studies or data collection because the truth is, no matter who you are or what you suffer from, at the end of the day we are all unique and that can never be adequately described in a book.