I’ve talked about the emotional aspects of receiving my son’s diagnosis here and here. I want to continue that topic but I want to break it down a little further and focus on the diagnosis itself.
I’m not talking about receiving the actual diagnosis which was the easy part. For us, it meant an appointment with the geneticist where she explained the diagnosis and asked if we had any questions. That was is. In a matter of minutes, we had our son’s diagnosis.
I’m talking about after the appointment. To me, this was the hardest part. It felt like we came to the appointment with a typical child but left with a child with a disability. Our world changed in the blink of an eye. We went from the known into the unknown and it was pretty jarring. The general overview the geneticist gave about the diagnosis was great but there was much more we needed to learn.
First, we had to understand the diagnosis for ourselves. This meant a lot of research trying to make sense of what the disability is and how it would affect our son. We also had to figure out the types of services our son would need. On top of all this, we also needed to schedule appointments with other specialists. There seemed to be a never-ending number of things we needed to do or learn after receiving the diagnosis.
The problem is that in the pursuit to understand the diagnosis and to care for our child, sometimes our child and their disability morph together. Where it is hard to distinguish one from the other. But they are distinct. The diagnosis is a condition they HAVE and not something they ARE. This should never be confused. To make sure this does not happen, it is important to have a correct view of the diagnosis in the first place. So let’s clarify what a diagnosis is and what it isn’t.
What is the diagnosis
The diagnosis is a clinical tool. It tells doctors (and other professionals) the range of symptoms and conditions your child has in a nutshell. Anyone can now use this information effectively (and efficiently) to aid in treatment. Since it is a clinical tool, it is nothing to be ashamed of. I like to think of the diagnosis as a zip file. It contains the entirety of my son’s condition compressed into a name.
What the diagnosis is not
The diagnosis is not a label. It does NOT define your child. Neither does it set limits on what they can or can not achieve. To clarify, this does NOT mean they won’t have obstacles they need to overcome. Of course, they will. They will also need to adapt some situations to meet their unique needs. But this does not limit the scope of their capabilities.
What have I learned?
The hard part of receiving the diagnosis was adjusting to what it meant. If you remember these three things it should make this time easier. First, the diagnosis is a way for your child to receive the services and treatments they need. It is nothing to be ashamed about. Secondly, the diagnosis does not set parameters on what your child can or can not accomplish. It is just a clinical tool. Lastly, a disability is something your child has and not something they are.