Sunday, October 6, 2013

Children, Not Acronyms: Complicated Diagnoses

Child A- CP, OCD, SPD, ADHD.
Child B- CP, ASD, SPD, ADHD.

Every one of these acronyms represents one thing for me: exhaustion. Exhaustion from researching and researching interventions and medications to better my children's function. Exhaustion from driving to specialist after specialist to monitor their care. Mental exhaustion from dealing with the symptoms of what each one of these disorders represents while still juggling my normal parental responsibilities, praying often that I don't lose my temper because of something that my children cannot control.

Exhausted, overwhelmed, disheartened.

What these acronyms do not represent: Andrew and Benjamin. Yes, they describe symptoms that they exhibit. Yes, they answer the question, "What are their special needs." Yes, they label them... but they are NOT them.

I, like many people, struggle at times seeing beyond these diagnoses. I am like so much of the world in that I am conditioned that people with certain disorders act in certain ways.... that certain diagnoses have limitations that cannot be overcome. This often leads me to forget to see my boys for what they can do and what they have overcome. I need to remind myself (with some swift kicks from a truly special friend) to forget these little letters and see my boys for who they actually are.

It's this struggle of mine that allows me to understand the way that others see my children. "What are their special needs?" is a question I get on a regular basis. It doesn't bother me or offend me. Most people are curious and are not trying to be mean and I appreciate that these people are brave enough to talk to me instead of ignoring me and my family. These acronyms give them a frame of reference...something tangible for them to grab ahold of to better understand my children. However, I always, in my talking-incessantly style, attempt to show them how wonderful they truly are.

I decided a long time ago that if someone asks me about my boys that they will hear about my boys, NOT about these acronyms. "Yes, Benjamin has autism, but do you see how loving he is? He loves to be hugged and cuddled and tries really hard to make friends. It's difficult for him, but for the kids who take the time to get to know him, he can be a really good friend." "Yes, Andrew uses a wheelchair, but do you see how great he can climb into that bounce house and how he goes down those slides all on his own? He doesn't let him slow him down." Yes, they have these diagnoses, but these diagnoses are not them.

I have to remind myself to not get upset when yet another specialist hands me yet another diagnosis. We very recently were given Ben's autism diagnosis and Andrew's OCD diagnosis, but these diagnoses did not change my children. They have been exhibiting the symptoms of these disorders for a long time. They didn't change because of the diagnosis, so why should I really care about it? It gives us more information so that we can better address their symptoms and care... that is all that it does.

Having said that, let me introduce my sons:

Andrew-determined, brilliant, hilarious
Benjamin-sweet, loving, musically talented

They are not their diagnoses.