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.
Two months after Sienna was born, Haley started preschool. As we walked into her classroom on the first day of school, I mentally took inventory of all the mothers. I assumed they all had perfect lives with perfect newborn babies. At the time, I was resentful. My husband was traveling constantly. My family all lived far. Sienna was not sleeping well, and as a result, I was sleep-deprived. I was living in a fog, still processing Sienna’s diagnosis. If I am truthful, this was a time full of despair. It was probably the hardest point in my life. On top of feeling like a victim, I was angry.
In my selfish mind, I owned the rights to hardship. I had no idea I was standing among warriors that had fought battles of their own. What kind of battles? There was a mom who had lost a pregnancy and endured medical trauma. She had to resort to surrogacy to have children. There was a mom holding a newborn. I didn’t realize her children were adopted. I didn’t know she had almost died of heart failure while pregnant. She subsequently lost that pregnancy. There was a pregnant mother with two boys. I resented her the most. You have to remember I had been through four miscarriages. I didn’t know this mom had been through a miscarriage of her own. I didn’t know she had endured the most unimaginable of tragedies, the swift loss of her own mother to cancer. I didn’t know these women were about to become my village.
I was not in the mood to make friends, but there was a mom in the class, Diana Rodgers-Genuardi, that refused to accept that. She was the kind of mom that wouldn’t let you refuse help. In the midst of my selfish misery, Diana invited us to her house for a group playdate. I assumed no one knew about Sienna’s diagnosis. I was nervous about explaining, but Diana made me feel comfortable from the moment I entered her home. She could see that I was at a breaking point. This simple interaction changed my life. She gifted me with a support system. She gave me friends that became family.
Last week, Diana texted me to check-in, as she often does. She knew I was struggling. She asked what she could do to help. I had no answers for her. She did what Diana does. She took the reigns and made an executive decision. In the midst of a terrible week, I received a love letter in the form of a blog post from Diana. Please read her wisdom below. I hope you will find inspiration in her words.
Lessons from a Mom with Typically Developing Children
Louisa and Haley met in Mrs. Davin’s three-year-old class at nursery school. Their love of princesses, space, and each other was instant and deep. Their strengths couldn’t be more opposite. Haley is an extrovert who raises her hand eagerly, makes friends with ease, is unafraid to be silly. Louisa is soft-spoken, gentle, and seriously focused. And yet, they became the kind of ride-or-die best friends that you hope your daughter will have throughout her life. It was the first time Louisa made a friend without me.
Because of Haley and Louisa’s friendship, I got to know Shannon who had just had Sienna. I knew before Shannon shared it with me that Sienna had Down syndrome—I’m an educator—but we didn’t discuss it because I wasn’t sure she was ready to talk about it with almost-strangers. At the time, I wasn’t really focused on Sienna, and I had no idea what Shannon was going through. I wish I could go back in time and be a support for her in those early months. I’m actually getting teary writing this knowing that I knew her and was totally unhelpful. But, I was going through our own crazy medical journey that resulted in our daughter, Susanna, and maybe I was a little self-absorbed at that point. However, over time, Haley and Louisa became closer and Shannon and I went from carline acquaintances to casual mom friends to also being the kind of ride-or-die best friends that you hope your daughter will have throughout her life.
The more I got to know Shannon and Sienna, the more I wanted to know and be able to be a support system. It was becoming increasingly clear to me was that Sienna, like Haley and Louisa, and Shannon and me, was going to need girlfriends. Maybe even more than we do, she was going to need girlfriends who would love her wholeheartedly because, despite, and irrelevant of her diagnosis. When my daughter, Susanna, was born about a year after Sienna, we started calling her Sienna’s bestie. Susanna, Sienna, and their other girlfriend Ellen are still toddlers and the differences between them are limited at this point. But Ellen’s mom, Maggie (one of Shannon and my other close friends), and I have normalized this friendship, so hopefully when those difference do become apparent, their love for each other will transcend diagnosis. I imagine them together, twenty years from now, as bridesmaids in each other’s weddings.
At the same time that Shannon and I were becoming close, Louisa made her second ride-or-die best friend without me at her ballet class. Cooper saw Louisa and understood her in ways that I didn’t know were possible for a four-year-old. She drew Louisa out of her serious focus and into uproarious giggling games of detective and Star Wars and knew when Louisa’s anxiety was heightened and she needed to hold hands or a tight hug.
Just like how Haley made me become friends with Shannon, Cooper’s mother, Annie, has become one of my close friends, too. Annie is forthright and direct about the fact that Cooper has autism, and I’ve seen, over the four years of our friendship, how Cooper has responded to therapy and become more confident, social, and resilient. After Cooper had a particularly bad day with a monster meltdown when the girls were four, I had to talk to Louisa about Cooper’s diagnosis. I didn’t want her to think that her friend was mad at her or that she had done anything wrong, and I wanted her to be sensitive to the fact that this might happen again. I also knew that transparence is what Annie wanted. Louisa thought for a while after my feeble attempt at explaining what it means to be neuro-atypical, and concluded that Cooper has “superpowers,” a word she continues to use in her own explanation of what makes Cooper Cooper. Annie and I were tickled to hear that Greta Thunberg also describes her autism as superpowers. A coda to this story is that Haley and Cooper are classmates and Annie and Shannon have become friends, too.
I have, as far as I know right now, three typically developing girls. If you would have asked me 5 years ago about my children’s friendships, I would have imagined them having typically developing best friends. That’s not what happened, but I’m grateful every day for the love, friendship, and diversity that our friends who are more deeply affected by disabilities bring to our lives. Last summer we left Pittsburgh and the friends whom we love. Louisa still says Haley and Cooper are her besties, and Susanna still proudly wears her Sienna’s Squad shirt. I’m trying to find a buddy organization here so they can keep making friends with kids with disabilities. I am still learning how to be an ally and a friend to families with children with disabilities, but in the meantime here are some things that I have learned on this journey so far:
Learn as much as you can about the child’s diagnosis. I read a bunch of blogs (I had been reading Girl in the Party Hat about Down syndrome far before Sienna came into my life), articles, and medical posts about these diagnoses. I needed to make sure that I used person-first language and accurate terminology. I also wanted to learn enough so that in an emergency, Shannon and Annie felt comfortable dropping their kids with me with no lengthy explanation.
Give your child permission to ask questions. By saying that your friend’s child with autism is just like your typically developing child misses the point. Explain to your child in an age appropriate way what makes them different and what they should do best include a child with a disability. Questions are going to come up. Louisa knows that she can ask me and my husband anything about her friends, and if we don’t know how to explain it, I text Shannon and Annie right away to use the language they want.
Offer to help and mean it. Families with kids with disabilities have some rough weeks with therapy or surgeries or extensive testing. Drop off a meal. Take the other siblings for a fun day. Just send a text offering support and don’t expect a response. Host a fun fundraiser for the family’s favorite charity. March, dance, walk, whatever with the family. By doing this, they will stop feeling bad about asking you for help.
Listen and be a source of stress relief. Your friend who has a child with a disability has a lot on her plate. Let her vent to you. Ask questions and try to learn what you can. Also, do stuff together. Annie, Shannon, three other friends, and I had a standing monthly dinner and an annual spa weekend. We make time for our friendship and know that while we all have complicated lives, our friends with children with disabilities have a totally different level of crazy. The rest of us are thrilled to be the comic relief and the distraction.
“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.