“I didn’t understand any of that conversation.” My brother looks at me quizzically.
“Oh yeah. How come?” I ask him curiously.
“The acronyms. There are so many. It’s like another language.”
We just finished an Early Intervention IEP (Individualized Education Plan) planning meeting. Our coordinator just left. My brother is visiting for a few days to help us out. He’s been to all of Sienna’s therapies and meetings this week. This last one has his mind spinning and it brings me back to the hospital delivery room, moments after we received Sienna’s diagnosis.
The nurse started telling us about Medicaid and EI (Early Intervention). She said Sienna might have an ASD (Atrial Septal Defect). She mentioned PT, OT, DSAP, and somewhere along the line, she started saying DS. She mentioned the loophole program and SSI (Supplemental Security Income). Suddenly, her voice started to sound like the adults in a Charlie Brown episode. I stopped listening.
When you’ve been on this journey for a few years, you start to speak the acronym language. But when it’s brand new, it’s terrifying. Because of my experience, I think it’s one of the biggest mistakes people make when talking to a new mom in the community. You’re already scared and then people start saying DS, ASD, EI, PT, OT, SLT……..and you feel totally overwhelmed. I thought I would never understand this world.
When we got home from the hospital with Sienna, I found our local Down syndrome support Facebook group, which is full of veteran parents. It was defeating. I didn’t understand many of the posts. I was relieved to find DSDN (another acronym, right?). When I found them, I was connected with other moms. They were at the same stage as me. They had babies the same age as Sienna or a few months ahead. They were new to the acronyms too. I felt like I could ask questions without judgment.
I was actually lucky. My cousin works for Early Intervention in NJ. She started to translate for me. She drove to Pittsburgh to be at Sienna’s first EI evaluation. I didn’t speak therapy then. I only understood PT. Everything else was alien, but she told me it would become my new normal. She was right. It is now my new normal.
I have a message for new moms. Don’t let it scare you. I promise that one day it won’t feel this foreign and paralyzing. If someone speaks to you in acronyms, ask them to stop. Sometimes, we just need a reminder that it takes time to learn this language.
Focus on your baby. If you want to breastfeed, tackle that challenge. If your baby needs to gain weight, conquer that. All the other crap can wait. Take it one day, one obstacle, one snuggle at a time. The rest will come. You don’t need to know all of this immediately.
In the meantime, if you ever come across something you don’t understand, I am just a Facebook message away. I’d be happy to help you figure it out with zero judgment. DSDN (Down Syndrome Diagnosis Network) is a fantastic resource when it’s all so unfamiliar. There are other moms feeling the exact same way that you are feeling. You’ll bond with them, and you’ll slowly start to realize that this community isn’t as scary as you initially thought. To be connected with one of their online birth groups, visit here.
If you want to print out a list of common acronyms in our community, this website has a handy printout of all the terms.