Sienna stands on the steps at our swim club, making her happy noises. She wades in and out of the water, giggling and splashing gently. I sit on the steps watching her. The steps are not only a destination for the kids, but also the older adults. This is the spot I usually get trapped into a conversation. 

An older woman is walking towards us, staring at Sienna. She sees me assessing her. 

“She is beautiful. She is one of God’s children.”

I immediately pull my sunglasses down from my head to shade my eyes, so she doesn’t see me roll them. 

“Thank you.”  I hate this dance.  

“Where does she go to school?”

We are interrupted as a man, who appears to be a little younger than me, starts throwing a ball with Sienna. 

“Brad, you really are the sweetest man. He is a saint. Look how good he is with her. Isn’t he amazing?” 

This kind of interaction might seem harmless but when these microaggressions happen repeatedly, they wear on you. 

“Brad works with handicapped children. He is amazing.”

I shift my focus to Brad. “What is it you do?” I ask. 

“I’m a speech therapist.”

“Where do you work?” I ask.

The woman interrupts us. “I am sorry but I cannot help but notice how good he is with her. Look at her responding to him.”

Sienna is playing the exact same way she does with anyone who engages with her. He is playing ball with her and she is laughing.

Am I taking this personally? It’s hard to know. I don’t remember anyone being called a saint for playing with Haley at this age.

I am sure Brad knew what he was doing when he went to college to become a speech therapist. Maybe Brad isn’t a saint. Maybe Brad is good at his job. 

I feel the need to clarify something. Sienna doesn’t exist to make other people feel good about themselves. We, as a society, need to stop using people with disabilities as our kindness barometer. 

I am going to pull an excerpt from the Lucky Few newsletter this week by Heather Avis:

“I feel like this should be a given, but in case it isn’t I’ll state it plainly here: being kind to someone with a disability is not a heroic act. Treating people with disabilities like everyone else shouldn’t deserve an award, it should be common practice. Of course I want my children (and all people) with Down syndrome to be welcomed and embraced and cherished in their schools and communities. I’m not saying there’s anything wrong with a classmate taking his or her friend with a disability to the prom. I’m saying that when we share that narrative, it’s important that we consider why. Is it a group of genuine friends sincerely enjoying each other’s company in truly inclusive relationships? Or is it a handout that’s expecting to be rewarded, or in the least, praised? People with Down syndrome shouldn’t be anyone’s charity case, and patronizing them just highlights how deep-seeded our ableism can be.”

We have been on this journey for 6 years now, and during that time, I have encountered the best of humanity. I have also met people with the best of intentions, saying well meaning things that over time have worn on me. 

Listen, I give people grace all the time. Sometimes, these comments hit me in a moment on this journey when I am struggling. I try to recognize those emotions in myself. I try not to be cynical and project my resentment onto well meaning strangers. I recognize that when this isn’t your daily life, you might not know what to say. That uncertainty is what pushes me to use my voice as a platform to create some understanding.

Just this year, I had to admit I was in denial about my own ableism. It wasn’t until so much resentment had built up that I realized these feelings were stemming from the same place. I want things to be typical, and quite frankly easier, for Sienna and our family. I want her to fit in. I don’t want to have to explain to strangers that she isn’t going to answer your question, because she is nonverbal. I want to blend in and not be noticed in a store and go about my day. I just want to go through life’s ordinary moments without facing one of these encounters, but that isn’t my reality.

So, how can you apply this to your life moving forward so that other moms coming behind me might not have to feel the way I do 6 years from now?

Here are some of my biggest tips. 

Read the room. Don’t assume all people are comforted by Christianity and LJC (another acronym I only heard in this world).

God doesn’t comfort me. Stop pushing him on me. Don’t tell me I am special and that he chose me. My spiritual journey is personal and it’s not something I want to discuss with everyone. It’s complicated.

Controversial opinion in this community, that surely won’t get me welcomed into the inner circle  – I don’t lean on God. I lean on therapists, experts, family, science, and my gut. Maybe God is intuitive in all of those things. That’s for me to interpret. 

People should be nice to people. End of sentence. Doing the bare minimum doesn’t deserve recognition. 

Don’t use your kid being friends with my kid as a way to brag about how special they are. Also, don’t force your kid to play with my kid. Let them figure it out. Let them be kids. I value the friends in my life whose kids let Sienna be Sienna. Sometimes that means all the kids around her are playing a game, and she is just there. I follow her lead and if she wants to participate in something that requires some adapting, we will help her. 

I love it when kids figure this part out on their own. It’s magic when adults sit back and let that happen. When it’s not a tiktok or instagram reel, and it’s just an organic, authentic consequence of childhood, it’s the best of humanity. It’s as simple as another kid picking up two stuffed animals, standing next to her, and making them dance in unison just like her. She will look up and see that they think what she is doing is fun, and she’ll be full of glee.

Let the kids have natural interactions, and be there to support them if they have questions. I do explain how her muscles work differently and that things are harder for her. That’s really all most children need to know to play.

Just this year, we were at a party with dozens of kids roaming throughout the house. Most of the adults were standing in the living room watching sports. The only parents I came across while following Sienna from room to room were moms of toddlers. I could tell Sienna was irritated to be the only kindergartner with her Mom following. I finally just stepped back and checked in from time to time. Then all of the sudden, I heard a group of them running, and shouting, “Watch out. She is a dinosaur!”.  I turned around to see Sienna with a T-Rex mask chasing them and growling. They all ran and she roared ferociously then the roars turned to very loud giggles and the giggles spread. I looked around the room and saw all the adults laughing as well. These are the moments I treasure. 

Something happens to you as you move forward in this life. You get comfortable with your kid, and it’s hard to observe the discomfort the rest of the world feels around her when all she is doing is just being herself. All the little idiosyncrasies that are inherent to her and us, are sometimes met with confusion. I get it. In some ways, Sienna can be easier than typical kids. She can go places with me, and lose herself in music, stimming, and whatever script is playing in her head. I have heard the kid recite entire movies using puppets as characters, but ask her an open ended question and the words don’t find her lips as easily. 

I have tried to let her guide me. If she isn’t bothered, I shouldn’t be either. That’s my ableism, not hers. Unfortunately, her emotions have matured this year and things are starting to bother her. I see people underestimate her abilities simply because she cannot verbally express her very nuanced feelings. I have watched the anxiety grow, like a tumbleweed collecting with each passing storm. It’s now so large that I have no choice but to face it. 

The anxiety affects everything – eating, speech, academics, friendship, social interactions, and most importantly her confidence. All her teachers this year have told me the child they see in the learning session videos I show them is not the kid they see every day. She doesn’t let her guard down, and being limited to half days has also limited her comfort level. I don’t know how to help her, but I started by calling the Down Syndrome Center of Western Pennsylvania. They have a behavior therapist on staff, who can do an evaluation, and help us give Sienna the tools to gain the confidence she needs in order to learn. She is so capable. I want her to believe in herself the way I do.

I was thinking about Heather Avis’ words in her newsletter this week. Dozens of interactions through the years played out in my mind like the one at the pool. Then I started to realize, these microaggressions aren’t going to just be my annoyance moving forward. She is going to notice it more, and she will understand the meaning. She might not be able to say that, but my kid has more emotional intelligence than most adults. She knows when she is being treated differently. I have to assume she will understand what comments like that woman said mean. 

In addition to Sienna’s feelings becoming more nuanced, so have mine. I have grown in my advocacy. I am not as polite as I used to be, and I am comfortable in my own skin. I will not hesitate to call this out. This year, the Mom I am, would have turned to Brad and asked him if he thought he was a saint for playing ball with Sienna. I am sure Brad would have said no. 

I am going to have to stop letting these comments slide, and start making people uncomfortable. I am okay with that. Whenever I meet a parent of an adult in this world, I have felt the hardship in their voices. You can tell they have seen more than you. With each passing year, I get that. 

What gives me hope? I look back to where things were for parents like me 20 years ago, and realize that there has been so much progress. Progress is reliant upon parents like me taking the baton from those veterans and continuing the work. We have to be okay making people uncomfortable. We have to be okay telling people that their well meaning comments aren’t perceived that way any more. My daughter does not exist to make you feel like a good person. She has gifts to bring into this world, so you are just as lucky to have met her as she is to have met you. 

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Chaos Continued

For the past 11 or so months, I’ve missed the busyness of our lives. I am not going to lie. The first few months of the pandemic were the reprieve I have long desired. I enjoyed the stillness of time spent in the backyard, scavenger hunts on walks, and the hum of virtual school background as our days stretched into months. Then those days became more stressful. I watched Sienna’s development fall behind and Haley’s anxiety escalate. We were all ready to resume our lives.

After Jason and I were fully vaccinated, we decided it was time to do just that. Sienna’s preschool opened. We chose to send Haley back to in person learning. We resumed in person activities and therapies. I immediately saw a difference in both girls. Sienna is talking more. She is playing appropriately with toys rather than stimming. Haley, for the most part, has a lightness in her step I haven’t seen in over a year. Jason began traveling again and is gone during the week. And here I am, holding down the fort. While in quarantine, I started some volunteer work which has almost become a part time job now. I am enjoying it, but it’s advocacy and it’s time consuming. I forgot about the chaos of our days, and how sometimes those days have the power to break me. The story I am about to share is about a day I recently did break.

I was in the midst of picking up Sienna from school. I had to rush to get her lunch, so that we could make the mad dash to the pediatrician for an eye infection, then it was off to get Haley from school, and get to PT as quickly as possible. I also had a zoom meeting scheduled that evening, and Jason was out of town. My phone rang. It was a neighbor calling to ask a simple question, The conversation was friendly enough and my neighbor asked how I was doing. Truthfully, this was a really rough week and I wasn’t doing well. I didn’t say that, but I said that I was struggling to come to grips with the continued chaos of our lives.

He then said to me, “You know what, though? That’s all on your terms. It could be a lot worse. You could have a job and have to be at a desk all day.”

I was so taken aback. I said, “Well, I consider what I do work.” He then said, “Oh that’s fun work. What you do everyday is fun.”

I cannot explain how angry this made me. I quickly made an excuse to get off the phone. Tears filled my eyes as I raced to get to school on time. It stuck with me though. All day it stuck with me. Fun work.

At the pediatrician as I restrained Sienna so they could examine her eye, I thought, is this fun? Racing to pick up Haley from school and get to Sienna’s therapy appointment, as my blood pressure rose, I again thought…is this fun? While there and watching Sienna struggle to do things that come so naturally to other kids, I thought…is this fun? Is this life on my terms? As we got home and I rushed to do the laundry, cook them dinner, do their bedtime routines, and get them in bed so I could moderate a zoom meeting for the DS community, I thought…is this fun? Anyone who has small children knows that very few things are on your terms at this stage.

I want to make something very clear. I respect working women with all my heart. I really do. I wish the world respected stay at home moms. When I worked, I had time to schedule doctor’s appointments for myself. I could enjoy a cup of coffee at my desk while working in peace. I could chit chat with other adults and not worry about a child injuring themselves. I could do things for me. I enjoyed it. I ultimately made the best decision for our family. Jason’s career led him to traveling during the week and my heart led me to being home with Haley full time. Those first couple years of her life were some of the best of mine. I endured four miscarriages, but I had my girl to pick me up. The miscarriages also weren’t on my terms.

I reflected on that call, and thought there was no point in dwelling on it, but I am sharing it today, so that maybe you can learn from my neighbor’s mistake. Never assume you know what a person is going through. We all have burdens and some carry them more gracefully than others.

There is an “extra” in this life. Things can be extra hard. Emotions can take over, and that can take a toll. During those still days, I wasn’t watching Sienna next to other kids her age. I wasn’t comparing her with others. There was peace in that, and readjusting to that has not come easily to me. I am not proud to say that, but it’s the way it is.

But that same day, something miraculous happened during Sienna’s therapy session. Haley participated in the session and rode a scooter down the halls. Sienna was trying fervently to do the same thing watching her in awe. I watched her cry as we pushed her, and made her forge on. It broke my heart to challenge her and watch her struggle, but her therapist knew she could do it, and I knew I could trust her therapist. I was certain this was going to be a a failed mission, but then Sienna did what she always does. She proved that she was capable. Her sister being there motivated her. I got to witness a small miracle. Tears filled my eyes for the second time that day on the way home from therapy. That moment right there makes the extra worth it. There is so much beauty in this journey. I would not change my life for anything. I am grateful for the perspective I have been given and the small celebrations and miracles I get to witness every day.

Sienna’s therapist assists her trying to ride a scooter, while Haley rides one to the right of her.

I am happy to say that I am now adjusting to the continued chaos of our lives. The muscle memory was there. I just needed to find it. Our days are flying by, but watching my girls soar as we race from place to place is a gift. I wouldn’t have it any other way. I guess some days it is actually fun.

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For the New Families Entering this Extraordinary Journey

I stood in your shoes. I stood at the precipice of this life, my emotions engulfed in fear, grief, and uncertainty. I remember the congratulations and the welcomes from our community. I still felt uncertain and then I felt guilt for my uncertainty. I want you to know that everyone entering this unexpected path has felt what you are feeling. We were not sure we could do it, yet here we all are saying congratulations and welcome to you. There is a reason for that. We have the gift of perspective. I promise that you will have that gift someday. You will process this and when you do, you will come out the other side. Someday, you will be dancing alongside us with your silly socks at a World Down Syndrome Day dance. I promise this life is something you will want to celebrate.

​Emotions are fleeting. Love is permanent. This child you have been gifted with is your baby and you will love him or her with a fierceness that will move mountains. You will become an advocate. As you settle into this role, you will learn about adults with Down syndrome living meaningful lives. Adults competing in Ironman triathlons, lobbying in Washington DC, acting in movies and television shows, and being celebrated for the people they are and the gifts they bring into this world. You will learn that emotional intelligence can take you far in life. You will see parents throwing parties when their children walk, talk, sit up, and everything in between, celebrating every milestone in agonizing detail because it warrants that reaction. You will have deeper friendships with other parents in this community. When you take away the pretense of perfect parenting, you connect with people on a more meaningful level. When you let your guard down and are given the opportunity to be truly vulnerable, the reward is a supportive lifelong community.

I would be lying if I said this path was easy. It’s full of mountains to climb and roads less traveled, but there is wonderment in this life. Hard work gives us an appreciation for things others take for granted. This journey turns life’s most ordinary moments into the extraordinary. My daughter, Sienna age 4, is sunshine, rainbows, and laughter. She has made us slow down and enjoy each day. When she was born, I found myself focusing too much energy on the future and unknowns. But Sienna in her wisdom, taught me that it was wasted energy. The truth is that none of us knows where ANY child’s life will take them. So now, we take it slow, enjoying each stage. We experience more everyday magic. I am so grateful to her for that welcome change in pace.

Sienna has forced me out of my comfort zone. She has made me take risks. Because of her, I started a blog that has been published by the TODAY show and ScaryMommy. Because of her, her 7 year-old sister and I advocated and fought for her rights in front of a US Senator. Because of her, he read my words on the floor of the United States Senate. Because of her, I have taken trips to Chicago, Phoenix, Nashville, and several trips to Harrisburg to connect with other parents in this community, each trip more meaningful than the next. Because of her, her sister has a front row seat to empathy and compassion. I can honestly say that Sienna has enriched our lives. She has made us better people.

Your child will do the same for you and your family. One day, you will stand in my shoes with a four year-old with Down syndrome, and you will be the one telling new parents that this life is worth celebrating. Until then, know that we have all felt what you are feeling and we are here to help you navigate it all.

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