“Two months after my Dad passed away, we found ourselves faced with a lawsuit that threatened to take away everything we had worked so hard to build. Simultaneously, I began to face unsurmountable health battles. In addition to facing overwhelming grief from the sudden loss of my 70 year-old Dad, Sienna was not being provided with the supports she needed to attend school, and I was forced to home-school her. The systems and people I thought we would get help from let us down. The corruption that lives in every facet of our broken country began to reveal itself at every turn.”
Our Great American Nightmare
Privilege allows you to be quiet, to go with the flow, and not rock the boat. It allows you to casually dip your toe in political conversations, but change the subject if it gets too intense. You get to redirect the conversation to a more lighthearted topic and silently judge the family member who takes it too seriously. I have been quiet in my politics for a few years, because I didn’t want to alienate anyone in my life. I needed to take some time to reclaim my voice, and find a productive way to express my feelings without coming across as judgmental. During the Trump years, I had many disagreements with people in my life who didn’t understand why some of his choices impacted my family. One of those people was my father, and when I unexpectedly lost him, I regretted having spent so much time hating his opinions. Since going quiet, it seems that our family’s lives have been even more influenced by some of the broken systems in this country. While Trump is and was polarizing, our problems are much bigger than just one person.
So, before you take that toe out of the cold water, and put it back on the warm sand, consider listening to our story. We are a family being impacted by the important issues in this country. I have learned that neither party has it right. In my opinion, both parties have led to the destruction of this country. I wish we could all stop thinking about pledging blind loyalty to party and agenda, and start pledging to listen to how the issues impact the citizens living here. I wish we could look outside our own interests, but I fear we are too far gone. We don’t listen to each other anymore. Instead, we point fingers and grow in outrage. I know it’s idealistic to think our story could change your mind, but I’m still a believer. I choose to believe in the power of good people. I hope that you will indulge me and listen, because people are drowning. No one taught them how to swim. They can’t access the lifeguard. Someone is yelling at them. No one is listening.
I had a vision of how my life would go, and my vision never came to be. I never anticipated the tragedy and hardship that would come for me as a mother. I never anticipated needing the government to help me. I wasn’t raised that way. I was raised to believe that hard work and preparation could get you through any hardship. Unfortunately, as an adult, I have learned that is incredibly naive. Some systems are positioned in a way that makes escaping the hurdles impossible. In fact, some systems count on that.
You may not need help or assistance from the government right now, but one day you may not be that fortunate. It happened to me over and over and over. We are currently at war with multiple systems; healthcare, education, corporate America and the litigation tactics used by people with power and money.
Two months after my Dad passed away, we found ourselves faced with a lawsuit that threatened to take away everything we had worked so hard to build. Simultaneously, I began to face some unsurmountable health battles. In addition to facing overwhelming grief from the sudden loss of my 70 year-old Dad, Sienna was not being provided with the supports she needed to attend school, and I was forced to home-school her.
The systems and people I thought we would get help from let us down. The corruption that lives in every facet of our broken country began to reveal itself at every turn.
Over the next few months, as we finally begin to get answers and reach resolution on some of the battles we have endured, I have decided to stop being silent and fearful of retribution. I may not have the money to waterboard families in litigation, but I do have my voice and I believe in its power.
Please indulge me and go on a journey with me. I will be sharing anecdotes, stories, and posts that will enlighten you if you allow them to.
Let me share with you some of the things I have learned the past two years. I will be sharing what happened with the franchise we were supposed to open during COVID, TruFusion. I will share my health journey, and how I realized even more so than before that our system is broken in so many ways beyond costs. I will also delve into how the public education system let Sienna and our family down, along with the Catholic church. They are things I wish I had known, but I was on dry land enjoying the sunshine and sand too.
Two years later, I find myself on a sinking lifeboat with my family, in spite of doing everything within my power to save us from drowning.
I turn my camera off after recording the coach going through the routine for the cheer competition and look back at Sienna.
She has melted to the ground and her eyes are puddling with tears. What had I missed? I step towards her and ask her what’s wrong as the tears stream down her face. I try to get her to stand and do the routine with her peers, but her body is like a pile of bricks. She pulls me down to the ground with her. The other kids are staring at us. I scoop her up and she wraps her body around me and hides her tear stained face and fogged up glasses in my shoulder. I walk towards the bathroom.
I help her get seated on the potty and I crouch down to face her. Sienna is quiet and stoic with her emotions. Most people never even notice she’s upset. I’m not most people.
“Are you okay sweet girl? Listen, you have been sick and missed the last few practices. It’s okay that you don’t know the routine. Miss Amy (her physical therapist) is going to help you learn that. This is supposed to be fun.”
She looks up at me, her bottom lip extended in a fierce pout. I question myself. Is this why she’s upset? Is something else at play? I know she knows she’s being treated differently than her peers at school. She leaves earlier than everyone and is removed from the typical class often. It’s been quite the dissent from preschool last year where she was fully included in everything.
This is kindergarten. She is 6 years old now. Her emotions are more complex, layered, and mature. What must be going through her mind? Does she realize things are harder for her? This is a gut wrenching moment for us both. We are no longer in a place where her differences in development can be overlooked. We stand at the precipice of a canyon that has just begun to erode. The gap is widening and with each passing step, the gorge grows in depth. I know time will only push the other side further from our line of vision. We can’t pause or stop. We have to keep going.
I am utterly broken. Is there anything harder than watching your child struggle? I wanted her to participate in this, so she would have interactions with peers. Her favorite movie is Zombies and it includes a ton of dance and cheerleading. She imitates the moves and has fun. It’s that simple. Am I forcing this on her? And if I am, who am I doing it for…her or me? There is no guidebook to this. I can’t rely on her verbally telling me what she wants. I have to trust my mom gut wholeheartedly, and lately my gut has been unreliable.
This is the push and pull I speak about so often. There’s a voice inside me willing myself to push for her to be treated the same as everyone and to be given all the same opportunities as her peers. “Advocate for her place in this world! She is capable.” it says. Then there’s the pull, “But this is too hard for her. She can’t keep up and you are causing her anxiety by pushing.” Back and forth they go and the mental tug of war in my mind escalates. It leads to a special kind of exhaustion that bleeds into your cognition, your emotions, and your body. It’s an exhaustion that only other mothers can understand. Quiet moments are no longer sacred. The push and pull can invade your safe space at any given time.
And then, just like that, as we are washing our hands, the voices of her peers can be heard from the bathroom shouting a cheer she knows. It’s one she has learned and a giggle erupts from her and the pout has been replaced with a fierce smile.
“Should we go back and cheer with your friends?”, I say.
“Friends.”, she responds with a smile.
We walk out and the little girl she stands next to in line yells for her to come and wraps her arms around her in a warm embrace.
Sienna’s smile widens in spite of the canyon. Erosion may be an unstoppable force, but so is Sienna. The push returns to my mind and lets me know we are exactly where we should be. I let the peace in this moment soak in, because even though I know the pull can return at any moment, I know to hold onto the tranquility as long as I can.
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.
