‘Don’t judge a book by its cover’ is pretty sound advice to live by. It reminds us that the things we can see and, sometimes, the things we hear about a person are just that – labels that we see or hear that don’t define what’s on the inside.
There is a big push among many in the special needs community promoting ‘person first language’. ‘Person first language’ describes the individual first as opposed to putting their diagnosis first – the proverbial ‘horse before the cart’. I think. I’m actually not sure, I never understood that saying. Basically, it allows you to identify the person for who they are and emphasizes that their diagnosis is simply a part of their whole self. They are the ‘child with Autism’ as opposed to the autistic child, the ‘baby with Down Syndrome’ as opposed to the Down Syndrome baby, and the person with red hair as opposed to ‘that ginger girl that blogs’.
The last one was for me.
It’s a very personal preference – some people love it and others prefer to use language that emphasizes their diagnosis. Either is fine and acceptable depending on the person, but they both allow and empower the individual to be their unique, amazing selves without the pressure of labels and titles. You know who loves labels, though?
Insurance companies LOVE to label people. It’s literally part of their job. Creating and assigning codes to patients and individuals is the way they may life and death determinations regarding treatment, services, and supplies they will cover and those they will not. Want therapy services? You need the right code. Medication coverage? Codes. Someone to pay for the nursing that lets you get a few hours of sleep during the night? Codes and diagnoses and determinations made by people who have never met our son.
And that’s okay.
Sure, it’s annoying and you wish they could see the special snowflake your child is, meeting their individual needs with that one extra therapy session or medication that you know will make things better. But that’s not real life. The biggest problem with the system, sometimes, is that some diagnoses and codes are more recognizable than others. And some diagnoses, like Jackson’s diagnosis of Coffin-Siris Syndrome, are so rare they don’t even have a code. That leaves kiddos floating in this diagnosis limbo, with words like ‘global developmental delay’ and ‘intellectual disability’ listed on their records without an explanation as to what this means to them.
So what’s a mama bear to do? Well, last week, I took matters into my own hands.
I asked for a diagnosis.
Okay, before you go calling insurance fraud on me – hear me out.
When we first visited with Physical Medicine and Rehab when Jackson was discharged from the hospital, they discussed the fact that Jackson would, more than likely, be diagnosed with Cerebral Palsy by the time he was two. CP is, much like other conditions, an umbrella diagnosis that can cover a large number of symptoms or presentations. It is often different from child to child, however Jackson’s entry into the world (not breathing) and multiple hypoxic events (also not breathing) set off a few red flags. That coupled with a number of other symptoms led our doctor to tell us that they were pretty sure he would be diagnosed at some point before he was 2.
It was some point. And he was before two. So I asked.
After talking with the doctor, she agreed that he had markers she would use to diagnose CP and was comfortable giving him a diagnosis now as opposed to waiting until our next appointment. Jackson was officially diagnosed with Cerebral Palsy, a diagnosis with a code that is easily recognizable on insurance paperwork. Yes, CP is a tough diagnosis. And, yes, I completely understand that being diagnosed with a condition like CP can be a tough blow to parents and families. But, after 13 months of being Jackson’s mom, I’ve realized something.
It’s just a word.
When we left the office with a new diagnosis in tow, nothing changed. Jackson was still the same child he was when we walked in. Nothing, outside of a our new found label, had changed. He still smiles when you tickle his feet and gets lazy in his jumper and loves to snuggle his blanket when he falls asleep. He’s still the kiddo who just learned how to clap and smack his lips and can now make it across the floor in a just a few fluid rolls. He’s still our Moose, our Bubba, and our little man.
Words and labels are what we make of them – they can drag us down and make us feel lost. Or we can use them for what they are, tools. Words can be tools to help us get the services we need to keep moving forward, to continue making progress, to help our little ones become the best they can be.
I used to let the labels get to me, but shifting my perspective has allowed me to see the positive power they can hold for us. After our diagnosis on Monday, I told our physical therapist about our newly acquired label and realized that we are lucky to be surrounded by like minded people.
‘That’s AWESOME!’, she said. ‘More services!’