My First Time

If you ask a mom in the disabilities community about the first time she heard the r word after she learned of her child’s diagnosis, I can guarantee she remembers. This is the story of my first time.

The ocean air hits my face and I welcome it. I finally begin to relax. The past 24 hours were exhausting. Truthfully, the past year was, but we are here. Our family is on the beach and on vacation. My feet brush against the rough sand as I try not to move. I don’t want to wake the baby. She is wrapped in a beach towel resting in my arms. We sit under the umbrella.

There is a large group of people in our crew. Sienna and I are somewhat off to the side. I don’t know everyone here. The beers are flowing. I notice a beach tag girl coming towards us. I gesture to my mother to hand me the bag where I stored our tags. A person in our group says, “Uh-oh. Here they come. When I was young, we used to pretend we were r******* to get out of paying for beach tags.” A few people laugh. A few people look toward me to see how I will react. Someone notices the tension and swiftly changes the subject.

My heart races. I feel the blood pumping swiftly through my veins. That relaxation I felt evaporates into the air. My stomach flips, and I feel as if I could throw up. My body sinks into my beach chair. I don’t think I could move if I tried. My head feels dizzy and light. My arms grip the baby protectively and instinctually. My eyes water and I am grateful for the sunglasses on my face. I knew it would happen. I knew this moment would come, but I didn’t expect this physical reaction. I didn’t expect it to hit me this hard.

I want to wrap Haley, Sienna, and me in a bubble and float off to a deserted island where no one can touch us. I want to protect them forever. How will I do this? Will I ever be strong enough to defend her? Will she hear this word? Will it cause this physical reaction? Will Haley hear it?

Obviously, I recovered from this moment. Shortly after this happened, I started my blog. Now when people say this word in front of me, they catch themselves. They cover their mouth, look at me and say, “I’m sorry.” I appreciate that. I do. But I can’t help but think…..what if I wasn’t here? Would they still stop mid-sentence? Would they use the word freely? Is my presence the only thing stopping them from saying it?

I’m posting this, because I want you to know how much this word affects us. I want you to understand the physical reaction it causes me. I want you to stop using that word all the time. I don’t want to hear I am overly sensitive or being too P.C. I don’t want to hear you weren’t talking about my child. None of that matters.

In the past, I gently corrected people when I heard this word. I’d be lying if I didn’t acknowledge the fact that I remember each and every person in my life that said this word in front of me. I do and it hurts. It’s a gut punch. I am sick of being gentle. I am not gentle anymore. Life hardened me. Expect to be educated if you say this word in front of me.

Have you ever heard of Rosa’s law? President Obama signed this law on November 17, 2009. The law removes the terms “mental re*****tion” and “mentally r*****ed” from federal health, education, and labor policy. It was replaced with the following people-first language; “individual with an intellectual disability” and “intellectual disability”.

The r word is never acceptable. If you see it on any medical paperwork, please inform the office that they are violating the law by using outdated terminology. If you hear a friend say it in casual conversation, ask them not to use it. Remember this story. There are thousands more like mine.

 

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So. Many. Acronyms.

“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.

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The Magic of Siblings

“What do they see, Mom? She’s the cutest baby ever. Why are they staring?” Haley looks frustrated as I begin to buckle her into her booster seat.

“I don’t know, honey. They just see someone different and they stare because they don’t understand.” I kiss Haley on the cheek and I climb into the driver’s seat.

“I still don’t understand. Just because her eyes are shaped like almonds. Everyone’s eyes are shaped different.” Her brow furrows and she looks out the window staring.

How do I explain this? I love that she looks at her sister and only sees her sister. She doesn’t see Down syndrome. She sees Sienna.

However, this will be impossible to avoid. When I carried Sienna into Girl Scouts today, I thought nothing of it. Then, I noticed all the older kids. This was, most likely, their first experience with someone like Sienna. They couldn’t help themselves, but I also watched my observant little kindergartner look at the older kids curiously. Her eyes followed their stares to her sweet little sister, Sienna.

I decided in that moment, during this conversation with Haley in the car, that it was time. It was time to call the school and ask if I could do a Down Syndrome awareness presentation. This is Haley’s school and her friends will have to understand some of Sienna’s challenges.

The presentation was a huge success. We taught kindergarten through sixth grade and I now watch those same Girl Scouts stare at Sienna with affection. They no longer feel the need to investigate her. They understand her muscle tone challenges. They know they don’t have to be afraid of differences. They realize she is more alike than different.

Some days, I wish the whole world could see Sienna through Haley’s lens. I think of how I first stared at my newborn baby girl. I didn’t know a thing about Down syndrome. The fear paralyzed me. Haley’s lens changed all of that. No one in Sienna’s life accepted her as earnestly as Haley. She was the first one to accept her, all of her, while us adults still struggled. It happened the moment she laid eyes on her. The day they met was magical.

The magic of their love is our greatest blessing. It’s a gift we get to witness every day. I used to worry that Sienna would take attention and affection away from Haley. During those first few moments of learning Sienna’s diagnosis and the doctor portraying everything so negatively, I blamed myself. I remember these words going through my head over and over, “I am the reason this happened. I destroyed my family. Life will never be the same.” Over and over those words danced in my head. It’s hard admitting that. Of course, I couldn’t have been more wrong.

Everything changed the next day when Haley entered our hospital room. She didn’t hesitate to give her love away. Not from the second she saw her baby sister. Her joy filled the entire room. I began to realize I was looking at everything wrong. Sienna was a gift. She was just a baby. She was a beautiful baby that I had much to learn about, but there was nothing to fear. She was just as much our baby as Haley had been. She was a piece of all of us.

Haley gave me the strength to move forward. She saved me from my fear. As I immersed myself in this new world, I began to realize that siblings in the Down Syndrome community were grateful. Sienna would make our life better. She would make us better people. Haley showed me that. Haley shows me that every day. She was Sienna’s first advocate.

Their bond continues to amaze me. They have an unbreakable connection that I cannot penetrate. Their emotions are one in the same. When one is sick, the other is depressed. When one is hurt, the other melts down in grief. When one is happy, the laughter fills our home. Haley is the most consistent feature in Sienna’s life. I wanted to pay homage to their love for each other.

I made this video as a tribute to them and all rockin’ siblings in the Down Syndrome community. What a gift we have been given!

 

 

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