We Don’t Want Sock Pictures

Instead, I want action.

World Down Syndrome Day is more than socks.

It exists as a platform to advocate for individuals with Down syndrome. I use it as a trajectory to get in front of Sienna’s peers and explain why she does things the “Sienna” way.

Sienna does not enjoy being the center of attention. Like her Father, she is quiet, stoic, observant, and silly. Like her mother, she lacks confidence and manages anxiety.

Sienna is one of the bravest people I know. To be 8 years-old and have nuanced thoughts and feelings, without an ability to communicate them, has to be incredibly frustrating. At dinner every night, her sister launches into a detailed “play by play” of every minute of her school day. Sienna stares at her, occasionally laughing, but more recently grunting impatiently, followed by mutters of, “shut up Haley”. Those interactions usually prompt banter between the sisters and giggles erupt. It is my favorite track on the soundtrack of our lives. These are the noises that bring a smile to my face, no matter what is going on in the rest of the world.

A line I repeatedly say to both my girls is, “I wish you could see yourself the way I see you.” I want Sienna to know she is worthy. I want her to know she is celebrated. I want her to feel loved.

I took WDSD as an opportunity to shower her with those sentiments. I showed her the presentation. I asked her what we could talk about. I saw the worry consume her and I hesitated. Last year, was her first full year at her school, and I went in the beginning of the school year. This year, I waited. She has now been there for two years. Mom coming to her school is not a novelty anymore. We are both comfortable in the walls of our neighborhood public school.

So, when I arrived and the presentation began she seemed shy, as usual. Then we got to the video of her working in therapy. Her classmates asked lots of questions. What does she like to do the most? She loves music, dance, and cheerleading. We showed photos of her cheering and her eyes met mine. Then the smile spread across her beautiful face and her cheeks turned the bright crimson color I have come to love. She was happy. That moment filled me up with all I needed to know – this was the right choice.

We made socks with her classmates, and today they wore them. She will come home having been celebrated and understood. World Down Syndrome Day did that, because it is about more than the socks. It’s about acceptance. As I told the students yesterday, if I have to change who I am to fit in, I am not accepted. If I can be myself and know that I am loved and celebrated for the unique flair I have, that is acceptance. Every human is worthy of that.

Every year, when I go into a classroom, I look at the sweet, young faces and think to myself – I wonder if any of these children will have a child with Down syndrome someday. If I had seen a presentation like this as a kid, I wonder if it would have changed the day of Sienna’s birth. I like to think it would have, because the truth is I had never been exposed to an individual with Down syndrome prior to Sienna. When she rocked my world, most of my apprehension stemmed from fear.

Sienna is not different to us. She is just Sienna. I am often thrown when we are in the outside world and people stare, when they talk to her and she doesn’t respond, when they ask why she is grinding her teeth, or stimming. It is just Sienna being Sienna. I sometimes watch her waving her puppets or stimming her hands to the music and find myself thinking – there is so much beauty here. If not for her, I never would have seen it. It is a privilege to witness Sienna being Sienna. It is a blessing.

I think it is why I am finding it so hard to go about my days, as if everything is fine, at this moment in time. For months, I have watched in horror as Sienna’s rights have been erased, defunded, and dismantled. Every day, moms in this community wake up to learn what damage is currently being thrust on their children and the disability community.

The gaslighting ends now. This is not alarmist. This is not fear mongering. These are facts.

Fact 1: Sienna’s school district is trying to close her school. They have been underfunded for quite some time. Part of the reason they are losing funding is because charter schools can open in an unlimited capacity in her district. The funding they receive for students in special education allows them to profit without accountability or oversight.

Fact 2: The Federal government closed all of the Offices of Civil Rights last week. OCR provides key protections for students with disabilities. It protects them in summer camps, activities, and education. They have all been closed and eliminated, and simultaneously the Department of Education is gutted. These have real life consequences. Every day, civil rights are violated. Somewhere in this country a child is being abused or hurt, and their parents do not have money to afford an attorney. There are other resources but nothing is as impactful as a threat from the Federal government. I would know because I have had to play this card, more than once.

Fact 3: The Department of Education exists to support low income students (Title 1 Funding) and students with special needs (Special Education Funding). It provides funding and protection. As I write this, Sienna’s school district is about to embark on a decision that will impact the rights of those very populations. Because the Federal government removed those protections, my family has no path forward to assist us.

Opinion: I feel abandoned by my country. I feel sorrow that my daughter is growing up in a country that is erasing her rights. I feel unspeakable grief that empathy is being weaponized as a weakness.

Fact 4: The Budget passed by the House reflects deep cuts to Medicaid. Medicaid also helps fund support services in schools.

Fact 5: If the Department of Education is defunded, and if they have to cut services, the medicaid cuts will add to the wreckage. We stand to lose therapies and supports in the classroom, and out of the classroom in outpatient therapy.

Fact 6: Research and NIH funding that helps her quality of life improve is paused. Minute by minute, hour by hour, and day by day she loses critical moments that could be helping her beat Alzheimer’s, autoimmune conditions, and any other conditions that present in the Down syndrome population.

Fact 7: DEI-A(accessibility by the way) improve Sienna’s opportunities in a world that we cannot count on to give it to her without those policies. DEI gives Sienna the opportunity to contribute and find meaning as an independent adult.

Fact 8: There is no way to view this other than an assault and an attack on the disability community.

Sienna is about to lose the things that matter most in her world – school, medical assistance, opportunity, support, etc. I don’t want sock photos.

I want phone calls. I want letters. I want protests. I want ACTION damnit! I want you to be as outraged as I am. I don’t want it to be just another notch on this administration’s carnage count.

I want pledges to vote in the best interest of humanity. Instead of wearing socks today, commit to voting for the Down syndrome community. Commit to empathy. Commit to being brave in the face of cruelty. Commit to advocating.

Sienna is more than a prop to make people feel good about themselves. She isn’t your inspiration porn. She is a living, human being. She doesn’t need your socks. She needs her civil rights protections back. She needs you to vote for her, and the best interest of the millions of Americans with disabilities in this country. She needs you to be brave.

She has to be brave in a world not designed her every day.

To learn more about how you can advocate and support legislation that fights for her rights, visit the PA Policy Center here.