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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The Endless Battle of Advocacy

I will never stop fighting for you. You are perfect just as you are. You are perceptive. It has to be frustrating to have people constantly underestimate you. You have an intuition about people, places, and nature. When you assert yourself in your way, I see you. You deserve friends, that understand you and accept you, exactly as you are. Beautiful flaws and all.

Advocacy is exhausting. I feel like I’ve spent the last six months fighting, some battles big, and others small. Why though? Why is there always a fight?

This journey is hard on a Mom. I know my child better than anyone. I can look at Sienna and know what she wants, needs, and feels. A mother’s intuition is her guiding light. It’s a force inside me, that I couldn’t argue with even if I tried.

This year, more than ever, it’s becoming evident that Sienna isn’t the one who needs to change. Things shouldn’t be this hard. The world should be more flexible, kind, and accepting.

So, I will keep suiting up for battle. I will wipe the tears from my eyes, the sweat from my brow, and the dust from my boots and I will fight.

Some people say moms in this community are strong, in a complementary way. I hear it all the time. You are so strong they say, but I’m not. I try to get the tears out in the shower and keep it together. I break down with my friends and I lie to the outside world. At some point in the last couple months, hearing you’re so strong felt like a farce. I am not strong. I am hardened. I am hardened by the endless battle that is advocacy. But I will keep going and maybe someday a mom who follows in my footsteps won’t have to be hardened. Maybe, just maybe, the world will bend and stretch into a place that has room for everyone.

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The Realization of a Greater Life

The night of Sienna’s birth, I remember watching Jason sleep and staring into space, a million thoughts rushing through my head. No one knew yet. It was our family’s information to process and digest. I am ashamed of the worries that raced through my mind. I look back on those anxious thoughts and realize just how far we have come.

What thoughts raced through my mind?

Can I do this? Will we still be able to go out for weekly Friday dinners? Will we be able to travel? Can I do this? Will we have to leave the city for a different school district? Can we afford to raise a child with Down syndrome? Can we do this? Will Haley’s life be affected negatively? Will she be pushed out of the spotlight? How will this affect our marriage? Can I do this? Is this my fault? I don’t think I can do this.

Five years later, I not only know I can do this, I am grateful for the ride and our tour guide. Sienna has taken me on a journey of self discovery. Sharing my truth and our story has given me a greater purpose. Sometimes, I question if I share too much. Then I remember reading blogs that same night those questions raced through my mind. I remember the reassurance that came from reading other mother’s stories.

I laugh at those questions now. We do everything we did before Sienna came into our lives. That doesn’t mean things haven’t changed. The changes have made our family better. They have brought us closer. We have slowed down. We place more value on our precious time together. Life isn’t a race and there is no competition. Our society places too much value on being perfect and doing things a certain way. Sienna does things her own way. We have found that we like her way. We love seeing the world from her viewpoint, and as she steers our course, we continue to see things in a beautiful light.

During this journey of self discovery, I have become an advocate. I have learned that life’s greatest joy comes from helping others. I have learned there are people willing to help us, and it’s okay to accept that help. Unfortunately, until something directly affects you, you don’t know what you don’t know.

I didn’t know I needed to become more brave. Sienna has made me push myself out of my comfort zone. I am so grateful for that push, because I don’t think I would have gotten there on my own. If she weren’t in our lives, I would have missed out on so much life has to offer. I would still be seeing things through my self centered lens. Sharing my truth has connected me to some of the greatest human truths – patience, hope, connection, wonder, and finally self discovery.

I have grown. I spend time helping others in the community. I advocate for her rights. I don’t take health care for granted. I take things as they come. I celebrate everything. I laugh more. She makes us all laugh more. I have learned the value of what’s really important. This October, I wanted to express my gratitude for our path. I am grateful to Sienna for giving me a new lens. She has enriched our lives in countless ways. Her presence in my life has liberated me in a way only love can.

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