Most days lately I have begun to wonder if my life is actually real or am I part of some sort of made-for-television movie game. The last seven years have been interesting to say the least. My middle child, now seven, has accumulated initials after his name. We’re not talking about initials that most of us earn through fancy degrees or certifications. These initials are given to you by medical professionals. I’d love to say that at seven years old he has now earned the infamous “MD” initials, but sadly that’s not the case.
His most recent initial accomplishment was last year. He was diagnosed with PDD-NOS. In case you are new to the wonderful world of special needs labels this stands for Pervasive Development Disorder – Not Otherwise Specified. Interestingly enough this was my favorite designation of all time! These initials opened up a whole new world for my son and my family. This was a designation that allowed us to pursue options, options that were not necessarily available for the laundry list of “Not Otherwise Specified” disorders he had originally been diagnosed with.
While I’m happy that after seven long years on this journey we finally have a diagnosis that makes sense and allows us to gain additional services, such as Applied Behavioral Analysis, I’ve come to the realization that our life, in general, has become Not Otherwise Specified. Every day I’m faced with a new challenge that many of my friends’ families are not. I wonder if it’s possible to actually have a day where my son doesn’t fall into a downward spiral of uncontrollable, unsafe anger because we don’t have any mint chocolate chip ice cream in the house. Growing up I thought I knew what a family was. Families have challenges, I saw that. There’s divorce, illness, sibling rivalry, etc., but safety and feeling love and support were always waiting on the sidelines to get us through those challenges.
In the world of PDD-NOS, we’re challenged with Sensory, Behavioral, Education and Relationship Building issues. Something as simple as planning a family day out becomes overwhelming just trying to ensure that your PDD-NOS child isn’t going to be over stimulated or frustrated by whatever exciting day you have planned. It’s becoming a full time job just to get the school to understand that while my son may appear “Normal” while in the building, we have had multiple scares since the start of the school year because he has run away to avoid the one place they think he’s doing well. Not to mention the nightly events when he’s letting himself “be” after keeping it together all day. These events are the most disturbing as they’re becoming difficult to keep others safe. This will sound strange, but when he runs away it’s easier. He is the only child, the only family member I have to worry about. Evenings when he’s having one of his meltdowns I’m forced to worry about everything. Will I be safe? Will his brother and sister be safe? What about the dog? What object in my home will be destroyed from being whipped across the room? Will we have to call 911 again and spend another night in the emergency room trying to explain to folks in the medical profession that a few minutes in time out or distracting with a video game will not solve his issue?
Our lives are definitely not specified, not like others. We live everyday, every hour with fear for our son and our family. We are tied to our home, our extended family support system and are always on guard for what could be creeping up around the next corner. I’m learning a lot about living in a world that is not defined. I’ve learned to be flexible, compassionate and most importantly mindful of others. I’m still figuring it all out and will probably spend the rest of my life helping my son through this journey. In the end though, when I look at families going to Disney every year or simply going out after school in the summer for an ice cream cone, I’m not envious. I’m grateful for the opportunity to be allowed to help this young man through life’s journey. So, if life is a journey, I’m happy that my journey is “Not Otherwise Specified.”
