There has been a big elephant, of sorts, living in our house. It is a monster that doesn't even have a name. We have been to a variety of experts (speech therapists, occupational therapists, developmental pediatricians, psychologists, etc) to help us describe and classify our elephant.
Most days we can handle the elephant but some days challenge us.
The big "it" has best been described as a developmental delay. Other times it is listed as a communication disorder, attention deficit disorder, oppositional disorder, sensory processing disorder, disruptive behavior disorder, etc...
All too often it feels like a parental failure, a product of a dysfunctional home, a result of too little attention, factor of being a twin. It has been difficult to describe and name and even more challenging to support.
It means that siblings have had their school projects ripped up, pantries have to be locked up, no special toy is safe, we are no where close to being potty trained, discipline is a constant struggle, and much patience is required.
It is a whole different bag of beans from a physical disability like cerebral palsy. We have that down to a manageable level.. we know our doctors, we know where to go for help, we know the therapy required. It has a name and has been diagnosed.
What Julianne is facing belongs in uncharted territory. It's frustrating to seek help from professions who meet her for an hour and make a gross opinion. Sometimes they see the worse and other times they catch a glimmer of what she is truly capable of doing.
What is honestly missing from all their opinions is "hope". Hope that she will be "OK" someday, that these behaviors will become less of a problem. "Trust" that Matt and I as her parents have some idea about what is best for her. We love this little girl so much, that while it seems like we are giving her "sensory input" we are really just trying not to squeeze her as much as we love her.
She is Julianne, she is unique and very special. Call her what you may but she is our Julianne.
