I first heard Sister Simone speak at the Women’s March in Washington D.C. on January 21, 2017. Like many people on that unseasonably warm winter day, I’d never been to a protest march before. I was unsure what to expect, and uncertain if I belonged. 

Sister SImone on the jumbotron at the Women’s March. Photo from networklobby.org

As I made my way toward the Capitol I joined a growing sea of pink hats and smiling faces. People carried signs quoting Mother Teresa and Dr. King, little girls in kitten-eared beanies bobbed above the crowd upon their mother’s shoulders, and members of the local Black church offered marchers water, granola bars, and words of encouragement as we passed.

By the time I reached the edge of the Mall my nerves had dissipated. The crowd slowed to a stop, and the clear voice of a smiling woman with a neat gray bob rang out from the nearest stage. 

As I listened I realized she was quoting scripture:

“... they say that we were gathered in one place - frightened and afraid … afraid to go out … and then a mighty wind came. A mighty wind that stirred the hearts and lifted the courage and let people know we’re not alone. We’re together. We’re together regardless of our faith, regardless of our color, regardless of who we define as our neighbor. We are all neighbors to each other and that is the deep truth our nation was founded on. We are our sister's keepers. We are our brother’s keepers. It is that truth that will help us to mend the gaps in our society.”

In that moment, I was transported back to my all-girls Catholic high school days in Baltimore City, where the Sisters of Mercy filled our heads and hearts with the knowledge that we were put on this earth to make it better. I was shocked, yet equally unsurprised, to learn the speaker was a Catholic sister – once again calling me to be a happy warrior in the mission for social justice. 

I knew I was right where I belonged.

That day, Sister Simone gave me my marching orders and I’ve been following them ever since. In our quest to make this world a better place through the work of Little Lobbyists, Sister Simone has been a constant support and source of inspiration. 

Sister Simone stands to my right, next to Elena Hung and Ady Barkan, as I speak at a press conference in the Capitol at the invitation of then-Leader Nancy Pelosi.

Later that same year, in December 2017, Sister Simone stood by my side as I spoke at my first “big” press conference with then-Leader Nancy Pelosi. Sister Simone nodded in quiet encouragement as I asked Congress to protect our children with complex medical needs and disabilities. She later invited us to her office at Network Lobby, and asked us to teach her organization about our children and what they needed. Over the next four years, we found there was always room for our families on Network Lobby’s national “Nuns on the Bus” tours, and at stop after stop Sister Simone lifted our families’ voices on her platform. She lent us her strength and amplified our message, adopting our cause as one of her own.

This month, Sr. Simone is retiring as Executive Director of Network Lobby. Though I know we Little Lobbyists and so many others will miss her leadership, I also know she will always be with us. I can think of no better way to honor her than by recommitting ourselves to following her charge –  

“So my friends, can we commit in this moment to exercise joy, to claim our passion, to have curiosity about our neighbors and then, share it around. Because if we each do our part, we the people will triumph, we the people are what our nation needs, and we the people will make the difference. Let’s do it together.”

Thank you, Sister Simone. 

Click here to listen to Sister Simone’s full speech at the Women’s March in Washington D.C., January 21, 2017: https://youtu.be/wcrbgSKF80U

Elena Hung and Sister Simone

Elena and Sister Simone hug at a Nuns on the Bus tour stop on a sunny day with a blue sky and palm trees in the background.

Nuns on the Bus Tour Stop

Elena stands at a wood podium with members of the Nuns on the Bus tour stop behind her and Sister Simone to her right.

Sister Simone and Abby

Sister Simone hugs Little Lobbyists Abby who is seated in a wheelchair. The Nuns on the Bus tour bus and a small crowd of people stand behind them.

Erin Gabriel speaks at the Nuns on the Bus tour

Erin holds the mic as she speaks at the Nuns on the Bus tour stop in Pennsylvania, her daughter Abby and members of the Nuns on the Bus group are beside her and the tour bus is behind her.

Angela and Myka at the Nuns on the Bus tour stop in CA

Little Lobbyists Myka and her mom Angela speak at the Nuns on the Bus tour stop in California with Sister SImone and members of the Nuns on the Bus tour group.

Nuns on the Bus Tax Justice Truth Tour

Little Lobbyists Simon, and his service dog Tigger are at the Nuns on the Bus Tax Justice Truth Tour. Sister Simone, Simon’s mom Laura Hatcher, and his Aunt Tess Veloso stand behind him.

December 2017, Leader Pelosi's office

From left to right: Little Lobbyists Simon, his Dad Brian Hatcher, Sister Simone, Laura Hatcher, and Ady Barkan in then-Leader Pelosi’s office before a press conference in the Capitol.

Little Lobbyists Moms and Sister Simone

Little Lobbyists moms Erin Gabriel, Tasha Nelson, Elena Hung, and Stacy Staggs stand with Sister Simone for a quick selfie in the Capitol

Amadou, Zana, and Amy. [image description: A Black family poses on a couch. The dad wears a black & white plaid shirt, the son wears a colorful striped shirt, and the mom wears a gray shirt, her hair pulled back into a bun.]

We must end police violence against Black Americans, and against all people of color, and people with disabilities. The U.S. House of Representatives recently passed the George Floyd Justice in Policing Bill of 2021, which, if enacted, would ban chokeholds and end qualified immunity for police officers. Police violence affects communities of color disproportionately. Data from Mapping Police Violence shows that about a third of those who died in police custody were Black. 

Police violence also has a disproportionate effect on the disabled community--estimates suggest that between 25 and 50 percent of those killed in police custody had a disability. Autistic children and adults are especially vulnerable to police violence due to the common behavior of elopement, which is wandering off to escape anxiety, overwhelming sensory stimuli, or to simply seek out enjoyment such as interesting places or the sensation of running. 

Little Lobbyists Zana’s mom, Amy Koné, explains why she and her husband Amadou fear for their son, a Black Autistic five-year-old. (Zana calls his daddy “DaHee”):

Hiya village.

This one is deep. Like you might need a tissue deep.

 Amadou works outside for a living. He is in a lot of neighborhoods and sees a lot of things.

Today he was in the right place, at the right time.

A little four-year-old boy escaped his house and was running down the street. Amadou pursued him and was able to return him safely home.

So Zana’s DaHee is a superhero!

DaHee would not agree. He would say “I was just taking care of a little kid” and that when he saw this little boy he saw our Zana. 

I am sharing this story because as a parent to a child with Autism, Amadou knew elopement when he saw it. (It is different from a child who is a runaway.)

I also am sharing this story to try to bring some awareness to our society. 

First, If Zana were to ever elope I would NEVER call the police. I am a Black woman, married to a Black man, looking for a little Black boy. We are all three targets. 

I’ll let that sink in.

Our being Black is not surprising to anyone, but I mention it because I need people to appreciate how persistent tensions between the blue people and citizens impact us. I’m sure not all of the blue people are shady but I simply cannot take a chance.

Second, the poor mother was in a state of denial/shame. Amadou shared our story with her and now she knows she is not alone.

The stigma of having a child on the spectrum is sometimes so heavy that parents prefer to not address the condition at all.

Folks, the pressure is at times immense.

I cry myself to sleep many a night despite my acceptance of Zana’s diagnosis from the very beginning (his diagnosis was a relief to me because I could FEEL that something was different).

I can only imagine the storm brewing in a Black parent in denial AND facing the responsibilities of caring for a child on the spectrum.

There are many bright spots of being a parent to a child with Autism. One of them is that our little Zana is a sensory seeker. Extreme behavior makes him ecstatic; he feels ALIVE when he is living on the edge.

Since DaHee loves sports, the two of them have an extra deep bond. Zana loves to be thrown all around.

Folks, let me remind you that hubs is 6’5” and frequently mistaken for a pro football player. Imagine a man this big flinging your 55 lb. “baby” through the air, only to have him land safely on a mattress.

And both are filled with glee. 

I’m thankful Zana has his DaHee.

And that Zana’s DaHee can dig deep (all athletes understand this) when he is absolutely spent from a day of working outside in unpredictable weather to rough house with Zana.

Thanks, as always, for listening and caring about us. This village is phenomenal.

---

Amy Koné is parent to a child with Autism and a member of Little Lobbyists. She currently resides in her hometown, Baltimore MD, with her husband and son. Their family now spans three continents, five countries, and an ever growing circle of friends.

As President Elect Biden stated, January 6, 2021 is a day that will go down in infamy. The attempted insurrection by Trump supporters shows us how fragile our democracy can be, and remind us that the strength of our democracy resides within each of us.

The democratic process works. Little Lobbyists’ success is a testament to it. Through peaceful protests and rallies, through scheduled and impromptu meetings with our federal and state legislators, through Congressional testimony and press conferences, Little Lobbyists has, against the odds, helped secure the Affordable Care Act and Medicaid for children with complex medical needs and disabilities throughout the United States. We have a voice. Democracy works when we use our voices constructively, legally, and peacefully to create change.

Seeing images of members of Congress with whom we have met being threatened and the defilement of the U.S. Capitol Building, the symbol and structure of our democratic process, is extremely disturbing. We stand with our state and federal legislators, who have stood by us as we advocate for our children with complex medical needs and disabilities and who are devoted to the protection of our democracy.

Here are photos of Little Lobbyists participating in the work and joy of our American democratic process over the last three years. Join us!

[Gallery description: Photos of Little Lobbyists families over the last few years as they speak at rallies & press conferences, meet with congresspersons, and participate in state-level events. Photos were taken inside & outside the U.S. Capitol, inside & outside congressional office buildings, at the U.S. Supreme Court, at special events, and at other locations. Individual photo descriptions appear using the cursor hover feature.]

A young boy holds up a Little Lobbyist sign at a rally on Capitol Hill.

A Little Lobbyists family poses in front of the U.S. Capitol, accompanied by a dog and a drum set.

Two toddler girls pretend to talk on toy phones. A graphic reminds Little Lobbyist supporters to call their members of Congress to protect health care.

A U.S. Senator hugs a young girl wearing a Kamala Harris t-shirt.

The Speaker of the House stands at a podium while a Little Lobbyists founder looks on.

A group of Little Lobbyists families pose in front of the U.S. Capitol after meetings with representatives.

The Senate Minority Leader hands out candy during a Little Lobbyists’ trick or treat day on Capitol Hill.

Little Lobbyists families sit around a table in a congressional office while telling their health care stories to a congressman.

Little Lobbyists members pose with a U.S. Senator after a press conference, with U.S. flags in the background.

An LL mom and her son speak to a U.S. Senator.

A montage of photos of Little Lobbyists families meeting with U.S. representatives is positioned next to LL graphics about supporting health care.

Little Lobbyists families pose on a playground after meeting with their representative.

A Little Lobbyists mom poses with a U.S. Senator.

Little Lobbyists children engage with their congressional representative at a local playground.

A Little Lobbyists mom and her daughter pose with the Speaker of the House of Representatives.

A young boy poses with a U.S. Senator in a meeting room in the Senate.

Two young men who are wheelchair users pose in a hallway of the U.S. Capitol after representing Little Lobbyists at a Senate press conference.

A young boy poses on a tree-lined street near the U.S. Capitol, with the Capitol dome in the background.

A montage of photos of members of Congress reading to Little Lobbyists families during a story-time meeting.

A mom holding a young boy in her arms speaks to a well-known member of the U.S. House of Representatives on a brick-covered city street in Washington, D.C.

A mom and her daughter are positioned next to an LL graphic describing the need for Medicaid.

A young man wearing a Little Lobbyists t-shirt sits in his wheelchair, posing with his dog in front of the U.S. Supreme Court.

A mom wearing a “Health Care Voter” t-shirt poses in front of the U.S. Capitol while hugging her children.

Little Lobbyists families pose in the halls of a House office building with a representative.

A Little Lobbyists family poses with their congressional representative.

Children and parents are seated around a large wooden conference table in a congressional office.

Two young girls are seated at a conference table in front of a marble fireplace. One shakes hands with her Senator.

A group of Little Lobbyists families pose with a U.S. Senator after a meeting on health care.

A montage of photos of Little Lobbyists families speaking out about health care in Congress.

With the U.S. Capitol in the background, a group of speakers stands on a platform at a podium, delivering remarks on health care.

Several Little Lobbyists families pose outside the U.S. Hart Senate Office building, next to its sign.

A founder of Little Lobbyists delivers remarks from a podium in the Capitol building. Flags are in the background.

Little Lobbyists families pose during a press conference, sitting by decorative doors to the room.

A toddler girl in a disability stroller greets a U.S. Senator.

A young girl sits in her wheelchair and makes a phone call while her brother stands next to her. They are in a hall in a congressional office building.

A group of Little Lobbyists families pose in front of the U.S. Capitol building.

A group of Little Lobbyists families, wearing brightly colored LL t-shirts are photographed at a presidential candidate’s campaign rally.

A large group of Little Lobbyists poses with a member of. Congress in front of curtains.

Little Lobbyists pose in front of the office of a U.S. Senator.

Several women pose in front of decorative curtains after making remarks about health care.

Little Lobbyists pose in front of the U.S. Capitol.

Two members of Little Lobbyists speak at a podium in the U.S. Capitol at the launch of a disability rights bill.

Little Lobbyists pose with a new member of the House of Representatives.

A family shakes the hand of a senior member of the U.S. Senate.

A mom poses with her child (who uses a disability stroller) in front of an ambulance during a health care public service campaign.

Several young children are seated at a long legislative dais, flanked by flags.

Little Lobbyists speaking at a rally.

In a black and white photograph, several Little Lobbyists moms pose in front of the U.S. Capitol, during the early days of the efforts to save the Affordable Care Act.

Little Lobbyists hold an impromptu meeting with a member of Congress in a marble-lined hallway.

Members of Little Lobbyists pose for a photo in a beautifully decorated, red-accented room in the U.S. Capitol.

A founder of Little Lobbyists holds multiple LL signs with the LL logo in front of the U.S. Capitol on a beautiful autumn day.

A founder of Little Lobbyists poses with her daughter. Both wear navy blue t-shirts with the LL logo.

A group of Little Lobbyists families in Tennessee pose in a conference room. They wear brightly colored t-shirts with the LL logo.

A mom and her son pose for a photo after a U.S. Senate press conference. The podium and U.S. flags are in the background.

A mom and her daughter pose after a press conference in the U.S. Capitol.

A new member of Congress wearing a vivid turquoise suit bends forward to grasp the hand of a Little Lobbyists child who reaches out to shake her hand.

Little Lobbyists pose in front of the name plaque of a U.S. congressional office.

A young boy is photographed in the hallway of the Capitol.

Little Lobbyists families pose with their legislators after a meeting in California.

A founder of Little Lobbyists holds up a photo of a child who has recently died, while explaining that our families need health care.

A large group of Little Lobbyists pose in Halloween costumes in a hallway of the Hart Senate Office Building during Halloween on the Hill.

A Little Lobbyists mom holds her daughter while posing with the Speaker of the House.

Little Lobbyists share their story in the Senate offices.

A child wearing a Little Lobbyists t-shirt poses with her state legislative rep.

A child receives a handshake from a new member of Congress.

Little Lobbyists family poses with their U.S. representative in a hallway in Congress.

A young girl whose wheelchair has been turned into a beautiful jellyfish Halloween costume poses with her parents and a member of Congress.

A new member of Congress signs an autograph for a Little Lobbyists teenager.

Little Lobbyists at a press conference.

Two young boys smile while riding the Senate train underneath the U.S. Capitol.

A group of Little Lobbyists in Halloween costumes speak in a hallway of a congressional office building with a legislator.

A father and son dressed as superheroes accept a Halloween treat from a member of Congress.

A young woman representing Little Lobbyists speaks at a podium marked with a “Lower Drug Prices” sign outside in front of the U.S. Capitol.

Little Lobbyists visiting a Senate office.

A young boy wearing a superhero costume speaks with a member of Congress in a hallway in one of the congressional office buildings.

A mom holds a young girl who gives a legislator a high-five.

Little Lobbyists kids pile around a large conference table during a Halloween on the Hill day.

Little Lobbyists at a night time rally in front of the Capitol.

A young boy sits on a patterned carpet with state flags after a state legislative press conference.

Senator at the table with Little Lobbyists.

Congressman kneels to meet a Little Lobbyists child.

Little Lobbyists teen speakers before a rally.

Two young boys play near a podium with a legislative seal. American flags are in the background.

Little Lobbyists on a holiday visit in a Senate office.

Several members of Little Lobbyists, wearing colorful LL t-shirts, pose in front of the U.S. Supreme Court, lit from within in the early evening.

Large group of Little Lobbyists families with the family of a congressperson.

A Congressman listens to Little Lobbyists teens.

Little Lobbyists members speak at a press conference inside the Capitol.

A Senator high fives a Little Lobbyists teen after his speech.

Little Lobbyists on the steps of the Capitol at a rally with members of the Senate.

A young boy sitting in a wheelchair and his sibling stand in front of a congressional office door.

Little Lobbyists family poses with a U.S. Senator. An American flag stands to one side.

Member of Congress at a local playground with Little Lobbyists families.

Little Lobbyists families sit and stand along a carpeted hallway in a congressional office building.

A mom holds her young son while they smile for the camera with a new member of Congress.

A Little Lobbyists family poses with the Speaker of the House in a wood-paneled meeting room.

In a marble-lined hallway of a congressional office building, a dad and his kids pose with a U.S. Senator.

Standing before decorative doors in a congressional meeting room, a mom with a stunning tattoo on her arm holds her young daughter while posing with a U.S. Senator.

The then-U.S. Senate Minority Leader distributes Halloween candy to a group of children in his office.

A young girl who is a wheelchair user poses with a U.S. Senator who is also a wheelchair user.

Two children dressed in Halloween costumes wait for a U.S. congressman to sign his autograph.

A Little Lobbyists family poses with a U.S. Senator.

Two Little Lobbyists moms pose with a new member of Congress in a white-brick lined hallway.

Little Lobbyists families and members of the House and Senate standing together on the Capitol lawn on a beautiful, sunny, summer morning.

A montage of hand-decorated Little Lobbyists DIY holiday cards.

Like all of us, Laura Hatcher, our Director of Design & Communications, and Jeneva Stone, our Blog Manager, have had to figure out how to make these December holidays as jolly and bright as possible, given the challenges of the present moment. We had some ideas we wanted to share, and we’d love to have you share your ideas for making the season bright, and participate in Little Lobbyists’ advocacy by sending your legislators one of our printable DIY holiday cards or coloring sheets (details below)! 

Laura: This year has definitely been challenging - juggling Little Lobbyists, working full-time, adjunct teaching part-time, virtual home school/therapy and caregiving, while trying to be a good (sane) mom/wife/daughter/friend/human has been ... tricky. I often feel I'm dropping more balls than I'm keeping in the air. BUT, I'm also trying to find ways to appreciate the slow down and be grateful for the blessings I have. For my family, for work I love, for small progress and periods of good health, for yoga videos at home and (socially distant) walks outside with friends, for the ability to keep food on my table and afford extra to share with our weekly community food drive. When I count my blessings I really do feel better. I even try to start my classes by asking my students to share one thing, however tiny, bringing them joy in that moment. 

Laura’s snowflakes. [image description: Above a table set with glasses, flowers and dishes are two windows decorated with paper snowflakes.]

My best pandemic-safe tip for this holiday season - decorate! Add lights, color, greenery, whatever makes you happy inside and outside the home. It doesn't need to be fancy or complicated - just a visible expression of joy, light, and love to surround yourself with and share with each passerby. My favorite decorations are paper snowflakes. They cost practically nothing and I make dozens to tape to the windows each winter. My neighbors say they look forward to seeing them, so I made extra and slipped them into their mailboxes to share a little more joy. Unfolding them is a tiny gift unto itself.

As a Catholic, I observe Advent - a period of anticipation before Christmas. This year, as I count my blessings and make paper snowflakes, Advent feels more meaningful to me than ever before. We've been waiting in darkness for so long - through social and political unrest, economic uncertainty, and a pandemic. But I have faith that with a new administration and a vaccine on the way, 2021 will bring us all great light. 

Jeneva: I second Laura on lights (and decoration)! Over the years, my family has found that getting our outdoor and indoor lights up has helped our spirits. Both Hanukkah and Christmas are celebrations of light. I’m grateful that we’re all together for an extended time this year, as our youngest, Castin, is home from college now until February. 

Jeneva reads holiday stories to her children Castin (l) and Rob (r) in 2012. [image description: Seated on a couch, with a brightly lit wreath in a window above, a mom reads a book to two young children.]

Recently, Castin and I went up to our attic to find a toy from my childhood, which was waaaaay back behind lots of boxes. Making our way through the mess, I began opening some of those boxes and found them filled with artwork and toys my children had outgrown. But these raised happy memories for Castin, so I had a couple of ideas to combat money, isolation and melancholy. Nostalgia can really clear away the blues.

First of all, we’ll be redecorating my 50+ year-old dollhouse as we proceed through Advent, using some scrap materials from around the house, plus some items I’ve ordered online. 

Second, I’m giving some thought to cleaning and wrapping up a few of those old toys and using some for Hanukkah or putting them under the tree as “Blast from the Past” gifts. Even grown-ups love their old toys! And we’ll have something to talk about.

Laura and her son Simon. [image description: A mom and her son, both wearing nay blue Little Lobbyists t-shirts, stand in front of an American flag. The mom points proudly to her son.]

Third, I once read somewhere that you should snap photos of your kids’ early artwork. I’ll make some photo scrapbooks of those masterpieces Rob and Castin made years ago. Online photo services are great resources for books, calendars and photo plaques, which might even make good gifts for far-away relatives (and photo services can ship them out directly).

What has raised my spirits most of all these last months? I’ve felt buoyed by advocacy. While I can’t meet with legislators and others in person, my own volunteer work for Little Lobbyists helps me feel I’m still making a difference.

You, too, can help--print and send a Little Lobbyists’ holiday card to your legislators! There are lots of ways your child can participate: they can color and decorate the card, or write or tell you their own message to include, or you can snap a photo of their beautiful face and paste it in the card’s illustrated frame.

The card bears the message, “Wishing you a New Year filled with health and care when you need it, opportunities to learn and grow, and to be included in your community as the valuable person you are. (The same things kids with complex medical needs & disabilities wish for every day.)”

In our hearts, ALL of you bring us joy! Keep sharing your stories and spreading your truth. However you celebrate, we’re wishing you a very happy holiday season!

My son Sam is a superstar.  He’s outgoing, athletic, loves basketball, sings country music, is learning how to play guitar, and he’s enthusiastic about comedy, conversation, and history. In 2009, I learned Sam was autistic. With a background in social work and child welfare, I imagined I was well prepared. Instead, I had a lot of work to do. 

Sam has blonde hair and is wearing a sweatshirt. He is outdoors, looking at the camera and smiling.

Throughout elementary school and 5th grade, Sam was thriving and enjoying life more than ever. My superstar became a high scoring shooter on a rec league basketball team and was well loved in the community for his outgoing and friendly greetings and comedic conversations.

When Sam started middle school, all of the changes increased his anxiety, and he began to shut down during math class. Unfortunately, his teachers didn’t recognize his high level generalized anxiety, including a physical somatic response, even though it was expressly mentioned in the IEP.

In March of 2015, Sam’s anxiety was at peak level, and he refused to go into the math classroom. At first, teachers offered him time in the “resource room” with the behavioral interventionist. While being escorted to the resource room, Sam “eloped” – he broke away from staff and was immediately restrained on his back on the floor, by four adults – only one of whom had behavior intervention training.

Here is what Sam had to say about this experience five years later (for the full conversation, see  the video):

Daya: So when you were restrained after you ran away, how many adults restrained you? 
Sam: Four.
Daya: How did that make you feel?
Sam: Worried. Just just a little worried, worried, sad, really upset. 
Daya: Then, how did it make you feel the next day?  
Sam: I was having trouble remembering stuff: eating, drinking, playing, learning about the presidents, talking.

The day after that one-time restraint, I lost my child as I knew him. Sam couldn’t speak, couldn’t feed himself, was aggressive and self-injurious, and appeared to have regressed to a pre-kindergarten reading level after testing at the 4th grade level prior to the restraint.

Restraint and seclusion changed our entire family’s life, in fact, set it on fire for years. What followed were three years full of aggression, fear, and anger. Sam needed psychiatric medication for the first time ever. He became destructive and even lashed out physically. He was changed overnight because the teachers and staff I trusted to care and educate Sam didn’t have the tools they needed to appropriately and empathetically help him through a mental health crisis.

It’s clear that we need legislation to prevent more children from being harmed in school. On May 26, 2021 Congress unveiled the “Keeping Students Safe Act” to protect students from dangerous seclusion and restraint discipline practices in school introduced by Senators Murphy (D-CT), Murray (D-WA), Casey (D-PA), Durbin (D-IL), Kaine (D-VA), Warren (D-MA), Sanders (I-VT), Baldwin (D-WI), Van Hollen (D-MD), Brown (D-OH), Blumenthal (D-CT), Wyden (D-OR), and Duckworth (D-IL):

“The Keeping All Students Safe Act would make it illegal for any school receiving federal taxpayer money to seclude children and would ban dangerous restraint practices that restrict children’s breathing, such as prone or supine restraint. The bill would also prohibit schools from physically restraining children, except when necessary to protect students and staff. The bill would better equip school personnel with the training they need to address school-expected behavior with evidence-based proactive strategies, require states to monitor the law’s implementation, and increase transparency and oversight to prevent future abuse of students.”  

Today, even during these Covid-19 days, Sam is beginning to thrive again. He’s now in the 11th grade, and has mostly rebuilt the skills he lost while he navigates his world academically and socially with autism. He continues to play basketball (when there’s no pandemic), and has regained most of his verbal skills. He’s a growing self-advocate who wants to help ensure laws are passed to make restraint and seclusion illegal. 

Once again, in Sam’s own words: 
Daya: So what would you tell Congress about restraining in school;
remember we're talking about the bill called Keeping All Students Safe Act.
So what would you tell Congress about laws they could pass to protect kids like you?
Sam: Students should not be restrained at school especially.
Daya: How come? 
Sam: Because adults should train better. Should be trained better to help kids.
Daya: And so tell me about your rights: Do you have the right to be safe at school? 
Sam: Yeah.
Daya: Do you want to stop this from happening to other students?
Sam: Yes.
Daya: How come?
Sam: Because they should be trained better.

It’s our wish that other families be protected by federal law from such a traumatic course of events. We have all been changed by this experience, and in hindsight, the trauma caused by the restraint could have been prevented by such easy and deliberate choices such as employing better practices in crisis intervention – just as KASSA provides. Federal legislators have introduced restraint and seclusion bills since 2009! The Keeping All Students Safe Act was first introduced in 2011, with  iterations reintroduced in 2015 and 2018 without passage in the Senate. It’s time to see this pass!

To advocate for Keeping All Students Safe Act, Sam recounts the story of his restraint and seclusion.
Transcript:
Daya: Alright, how old were you when you were restrained?
Sam:  12
Daya: what grade was that?
Sam: Sixth.
Daya: How come you were restrained?
Sam: I was being dangerous and ran away.
Daya: Oh! You ran away. 
Sam: Yeah.
Daya: Okay so you ran away from where?
Sam: The resource room. 
Daya: Why were you in a resource room?
Sam: Because I didn't want to go to math with Mr. Parker.
Daya: What were your feelings about math?
Sam: Hard. 
Daya: Okay, so when you were restrained after you ran away, how many adults restrained you? 
Sam: Four.
Daya: How did that make you feel?
Sam: Worried. Just just a little worried, worried, sad, really upset. 
Daya: Then, how did it make you feel the next day?  
Sam: I was having trouble remembering stuff: eating, drinking, playing, learning about the presidents, talking.
Daya: All the stuff you learned from kindergarten, right?
Sam: Right. 
Daya: So what would you tell Congress about restraining in school; remember we're talking about the bill called Keeping All Students Safe Act. So what would you tell Congress about laws they could pass to protect kids like you?
Sam: Students should not be restrained at school especially.
Daya: How come? 
Sam: Because adults should train better. Should be trained better to help kids.
Daya: And so tell me about your rights: Do you have the right to be safe at school? 
Sam: Yeah.
Daya: Do you want to stop this from happening to other students?
Sam: Yes.
Daya: How come?
Sam: Because they should be trained better.
Daya: Okay, well thank you very much for this interview. I appreciate you talking about such a hard thing. 
Sam: Bye-bye.

---

Daya Chaney Webb is a Little Lobbyists Ambassador and Sam’s mom. She has a background in social work and child welfare, and is an expert in special education law and IEP development and implementation. She has helped other parents as a volunteer family advocate. The absence of legislation protecting kids with disabilities in school led her to lobbying work, most recently with The Alliance Against Seclusion & Restraint as Legislative Director.

On the left, Sandra’s father. On the right, her son. [Image description: A split screen shows, left, an older white man with glasses, suit and tie, speaking into a microphone. To the right is an image of a black child wearing a black face mask and a blue jacket.]

March 2007: My sixty-six-year-old father is rushed to the hospital after surviving a fairly major heart attack while living in another country. I fly to the city where he is, assess the cramped and disjointed medical infrastructure and immediately initiate plans to Medevac him home for care. He tells me he does not want to return to the United States for the surgery that could save his life. Thinking he is anxious or heavily medicated, I try to persuade him to consider transferring to the nearest U.S. hospital. He signals for me to lean down closer where he quietly whispers “I’m uninsured.” 

“What?!” I nearly yelled at the man who made sure I maintained insurance through my cavalier twenties, no matter how small my mostly gig-based income. He then informs me of a pre-existing condition that made him ineligible for gap insurance once he retired. He tells me that even if we can figure out how to finance the Medevac, he can’t afford the surgery in the U.S. with only Medicare coverage. Even worse, he doesn’t want to be a financial burden to my siblings and me if he survives. He looks at me sternly and whispers, “Just let me die.”

After a week in the intensive care unit of this chaotic overseas hospital, he undergoes the surgery, emergently, and dies on the operating table. The thought that getting him home might have made a difference still weighs heavily on me.

December 2008: My son is born. We name him after my father. He is healthy and beautiful and brilliant. 

March 2010: The Affordable Care Act is signed into law. 

August 2011: My nearly three-year-old son loves trucks and airplanes and ambulances. While passing a parked ambulance in our neighborhood he says, “You know, Mommy, I’ve never been in an ambulance before.” I reply enthusiastically, “Maybe one day you can see the inside of one!”

Two days later I find my son seizing in bed. My husband calls 911. An ambulance rushes us to our nearest hospital. Within days my son loses his ability to walk and talk and swallow. He is eventually diagnosed with a type of autoimmune encephalitis. We live in hospitals for fifteen continuous months. 

Because of the Affordable Care Act (ACA), we do not face the calculus my father confronted. We don’t have to think about the cumulative costs of my son’s multiple life-saving surgeries against a cap of lifetime limits on insurance benefits—which would have been exhausted within the first month of his hospitalization—while making impossibly hard medical decisions. 

November 2012: We are finally discharged to provide hospital-level care at home. My son’s disease leads to long-term disabilities and further medical complexities. Because of the ACA, we are able to change jobs to better accommodate his care needs and, even with his pre-existing conditions, insure him when we make the change. 

Over time he is able to go to an inclusive, wheelchair-accessible neighborhood school. He builds strong friendships. He participates in adaptive sports and loves adventure. Eventually he is strong enough to enjoy adaptive horseback riding, ziplining, fishing, swimming, and skiing. 

October 2020: With healthcare at stake in the upcoming election and in the context of a lethally mismanaged global pandemic, I reflect on the despairing look on my father’s face when calculating the cost of returning home to receive care. I think about the many people who, like my father and my son, will become unexpectedly ill and depend on a robust social contract for healthcare that we must fiercely and collectively protect. 

While living in hospitals, we met many families facing sudden, unexpected and life-altering illnesses, accidents, and events, from stroke to car wreck, from fallen tree branch to gun violence, from heart attack to rare disease. What happened to my father, to my son, and to our fellow hospitalized families--and what is happening right now to many Covid survivors facing long-term health complications and disabilities--could happen to any one of us at any time. I am profoundly thankful that, thus far, we have not had to make the impossible calculations for my son’s care that my father made regarding his. 

Without a trace of hyperbole, I know that my son’s life depends on strengthening the social contract that the ACA represents, rather than further unraveling it. 

This November, protect your children. Protect your parents. Protect yourself. Protect my son. Vote.

In loving memory of Robert G. Stein

---

Sandra Joy Stein is a writer and educator. Her most recent New York Times article can be found here. 

Little Lobbyist Angela Carpenter Gildner at the U.S. Supreme Court after advocating for our families. Angela has blond hair and is wearing a black face mask with the words “Health Care Voter.” She is also wearing a navy blue Little Lobbyists t-shirt. The white marble steps and columns of the Supreme Court are in the background.

The 2020 election bears down on us now like a freight train on steel tracks, the hardwood ties that bind them blurring underneath it. My eyes are focused on that coming train, my viscera tightened for impact. But I must act.

What can I do? What can you do? Little Lobbyists has officially endorsed Joe Biden and Kamala Harris for president and vice president because we believe this country needs better and more accessible health care. 

If it’s not obvious by now, it should be: Health care forms the bedrock of a functioning and sustainable economy. And, yes, it’s also a human right. Access to affordable, robust health care means you can get sick and still hold onto your job. Health care decoupled from employers means you can change jobs without risking your family’s health. 

For those of us caring for family members with complex medical needs and disabilities, access to health care--whether through the Affordable Care Act (ACA), Medicaid, or the Medicaid waiver system--allows both our children and their families to survive and thrive, our children living at home where they belong. And, more than that, these baseline supports allow us, as parents, to work to support our children’s other needs, including housing, technology, and transportation. In fact, medical support gives us the time and space to be parents to our children, not just caregivers. 

Here’s what you can do to help elect a president, senators, and representatives whose focus in 2021 will be on preserving our health care:

1. Show your support on social media. Change your social media profile pic to show your support for Biden-Harris and health care. Convince friends and family to do the same. Add one of our profile pic frames! Just search “Little Lobbyists” when changing your Facebook profile picture. And check out Team Joe’s digital tool kit. Take selfies wearing LL’s health care t-shirts. 

2. Share your story with us. Little Lobbyists will work to make your voice heard on Facebook, Twitter, and other platforms. First of all, share your story with us at Little Lobbyists! Be sure to follow and tag us on Facebook, on Instagram (@littlelobbyists), and on Twitter (@LittleLobbyists). Want some data for your own social media posts on health care? Get it at Health Care Voter and Protect Our Care, and be sure to tag them (#HealthCareVoter, #ProtectOurCare) when posting. 

3. Phone bank or text voters. Ok, take a deep breath and set your social anxiety aside. The Biden-Harris campaign needs you to volunteer: make phone calls and/or text voters to get out the vote (GOTV). Sure, you’ll get hang-ups, some people might be a little mean, but, remember, Trump won Michigan in 2016 by only 10,704 votes. That’s about 2 votes per precinct. Change the minds of just 2 voters, and you might help tip the election in swing states. You’ll get a script and dial-in instructions that will identify your computer or phone as a Biden-Harris campaign number. Have a special knack for talking to Midwestern voters? Indivisible Chicago has a Three States, One Mission campaign (Illinois, Wisconsin, Michigan). 

4. Write postcards to voters. More comfortable putting your thoughts into words? Tell others why you’re voting for Biden or a Senate challenger in a swing state. Try Postcards to Voters. You’ll need to register with the group, write a sample card, and get approved. Too many thoughts for a postcard? Write letters for Vote Forward. 

5. Organize others. If you’re feeling more ambitious, you can be a Vote Mobilizer with MoveOn. You can also Take Action with Indivisible. The Arc has a page full of resources for health care advocacy for people with disabilities. In the end, GOTV is all that matters--getting those voters to actually cast those ballots. 

6. Plan your vote. Have questions about voter registration, vote by mail, absentee ballots, early voting, locations of official ballot drop boxes in your state? Are you fielding questions from friends and family you need help to answer? The Biden campaign has a resource here, and the late-night host Stephen Colbert has an extensive website, Better Know a Ballot.  

Health care matters. Health care saves lives. Health care is a human right. To protect health care, save the ACA, and work toward a plan for health care for all in a new Congress, under a new President--VOTE, SHARE YOUR STORY, PERSUADE OTHERS, and ORGANIZE! 

This election is a freight train bearing down upon us all at frightening speed, with about a month to go. One candidate wants to derail health care. The other, Biden, wants to protect our care and protect us. If health care matters to you, the choice is clear. Do something. And be sure to vote.

---

Jeneva Stone is the blog manager for Little Lobbyists.

Emma Staggs, a young girl with blond braids and a blue dress with a watermelon slice pattern, holds her AAC device in its bright pink case. Emma is seated on play equipment in a backyard.

I love the sound of my daughter's voice. Like any mama who adores her kiddos, the sweet, small sound of their voices are music to my ears.

My twin girls, Emma and Sara, will celebrate their 7th birthday later this month. They are happy, rambunctious, curious and remarkably loud! Our family, like millions of others across the country, is navigating distance learning in all its online glory. Also, like millions of families whose kids have complex medical needs and disabilities, we have been at home since March. Our visits with aunts, cousins, and grandparents have been via video calls. In a world that leans into technology, we are more immersed than most, for an incredibly important reason: Emma speaks through an Augmentative and Alternative Communication (AAC) device.

Among the list of pre-existing conditions that arose from extremely premature birth and prolonged intubation (months on a ventilator), Emma has idiopathic bilateral vocal cord paralysis (iBVCP), which means that her vocal cords are essentially stuck together, so they do not produce sound. She has a breathing tube and a feeding tube that were surgically implanted when she was 3 months old. These procedures saved her life and offered a path to hospital discharge so I can raise her in our home, with our family. 

Apart from a breathy exhale or gurgly, boisterous belly laugh, she doesn't produce any sound.  And sure, she's under the care of multiple specialists. There is always hope and, in fact, 75% of children with iBVCP gain their voice by age three. Can you imagine? They just wake up one day, singing like a bird! Again, Emma and her sister will be 7 this month, so she is part of the remaining 25% that haven’t gained their natural speech.

My husband and I have done what all parents do for their children. We find the tools they need to meet their fullest potential. For Emma, and kids with a similar diagnosis, a big part of that is her AAC with voice output. It looks like a pumped-up iPad, but with specialized hardware and software and a pink protective case so she can safely carry it everywhere she goes. It has a series of pages, with grids and pictures on each page. When she taps each individual grid, the software causes an approximation of a young girl’s voice to speak the word associated with the picture. Thankfully, technological advances allow the voice to sound more assimilated and much less robotic. It literally sounds like her (or what I imagine to be her voice)!

Emma’s AAC device, which resembles an iPad and is in a pink case. The screen displays icons for various colors, and below it is a sketch pad on which Emma has drawn colorful flowers with markers and written her name.

Here's the thing, it's AWESOME! As she learns to navigate this tool, her world expands. She can better communicate her wants and needs, her likes and dislikes. She can touch buttons that sing her favorite songs in sections. She can greet her family and nurses, tell us when she wants to take a break or needs her breathing tube suctioned. It even helped with potty training! When her teacher asks questions during online learning, she can respond. In conjunction with American Sign Language (ASL), she is included in the learning and social exchanges that happen throughout the school day.

As she grows, the device will grow with her, which is fortunate because it came with a $6,000 price tag, covered by Medicaid after months of paperwork, letters of medical necessity, and therapeutic justification from her therapists. The difficulty is worth it: I think most of us agree that communication is a necessity, a human right, and something we should make all attempts to provide. I would argue that vulnerable and marginalized people need to use their voices even more.  

We are preparing Emma to be a successful self advocate. On that glorious day when her proficiency, tools and abilities to speak her wants and needs to a society with the grace to listen, nobody will be more relieved or excited than her family.

But I have to admit, my favorite part is when she pushes the button that gives the voice command to say, "Hi Mommy. I love you." That is music to my ears.  

---

Stacy Staggs is Little Lobbyists’ National Director of Community Outreach and its North Carolina Chapter Leader.

Bob Williams seated in his wheelchair, which has a mount supporting his communication device. Bob is a white man wearing a white suit jacket with a pink striped shirt and a bowtie.

As far back as I can remember, I have always found ways to express myself that others can understand. It is why I escaped the discrimination others still endure.  

I have significant motoric, and speech, disabilities due to cerebral palsy. On the wall of my office hangs a piece of wood with the alphabet and numbers zero through nine stenciled in black. It is there as a reminder of both the journey I have been on over the past 63 years and the large debt I am paying forward.  

I believe my life, while molded by many factors, has been possible by the love and belief that my family and others have had in me. From a young age, I had a ready supply of ways to communicate and connect. My Mom said that she knew I could keep a beat and had things to say when I pretended to lead a band or played 20 questions, beginning as a toddler. At six or seven, I learned to type on an IBM electric typewriter, which convinced my doubtful teacher that I could both read and write.

When I was about 15, my camp counselor painted the alphabet in bold black capital letters on that piece of wood hanging on my wall. I pointed to the letters to spell out words and sentences. A year or two later that same camp counselor handed me a green board that had letters, numbers, words, and phrases on it. It was called the Hall Roe Communication Board, named for the man with cerebral palsy who helped design it, and it saw me through high school, college, dating, internships, and my first two full-time jobs. In fact, I used that board to lobby with others to gain passage of the Americans with Disabilities Act (ADA).  

Bob’s first communication board: a piece of brown wood handprinted with the alphabet in capital letters and the numerals 0 through 9.

Just after the ADA became law, I participated in the Augmentative Communication, Empowerment, and Supports (ACES) Institute at Temple University in Philadelphia. There with about a dozen other people who used AAC, I learned to use my first speech generating device. I have been using successive iterations of this same device throughout my life.  After that my life and career took off in directions even I had never before fathomed possible.  

ADA AND THE RIGHT TO COMMUNITY 

For me, the penultimate purpose of the ADA is best summed up in four words: The right to community. I want to be clear; I did not say “the” community. I said, the right to community: To be a part of, not apart from, life.  

Congressman John Lewis’ last words to America, printed in The New York Times on the day of his funeral, were these: “Democracy is not a state. It is an act.” I believe he meant democracy is not just some fancy-sounding noun we use. Not something we should dare take for granted. Rather, it is a verb--the action we all must engage in known as E. Pluribus Unum, each doing of our individual and collective parts to create and nurture. One out of many. 

I believe the same is true of community. Community is not merely a place on a map. It is an act that we all must engage in and take responsibility for, together. It is the action of communicating, connecting, and being in community with each other. 

I often ask all kinds of people what they see the purpose of the ADA as being. Predictably, they say that it is to eliminate the architectural and other design barriers many of us encounter. I reply this is true as far as it goes. But I then point out that the fundamental aim of the law is to continually chip away at and to eradicate the pernicious, deeply entrenched biases that are the root reasons for these barriers, as well as other forms of discrimination, including speech discrimination. 

Progress clearly is being made, but far more work remains to be done. Thirty years ago, when many of us were working on the passage of the ADA, we referred to accessible transportation as the linchpin of community integration.  

Today, effective communication is that linchpin. Absent that, there is no community, there is no real integration. Where we live is critical, but merely being present is not sufficient. Absent the opportunity, tools, and strategies we need to communicate, connect, and live with each other, as part of one another, we are all forced to live separate and apart from each other. 

A Hall Roe Communication Board. Image of a board with a blue background covered in sections of black type that include commonly used words and phrases, as well an as alphabet.

SPEECH DISCRIMINATION

To this day, there is no question that children and adults who cannot use our own natural speech to effectively express ourselves continue to experience higher risk of unjustified institutionalization, segregation, and isolation; abuse and violence; widely disparate education, employment, and health outcomes; and the routine violation of our liberties, the power to express ourselves, and to decide how we live our lives. 

The ADA offers two sets of requirements that I strongly believe we must increasingly leverage to challenge and put an end to it. The first of these is the right to effectively communicate. The ADA requires that people with disabilities that impact their ability to communicate (whether expressively, receptively, or both) must be afforded the opportunity, tools, and supports necessary, in the words of the Justice Department, “to equally and effectively communicate with others.” 

The second set of safeguards are those commonly referred to as the “integration mandate” of the ADA and affirmed in the Olmstead decision, which require that people with disabilities not be institutionalized, segregated, or otherwise isolated, and that they must be afforded the opportunities and supports to take part in every facet of the American community.  

For too long, far too many children, working age persons, and older adults who need, but lack access to augmentative and alternative communication strategies and related supports have been isolated and excluded from much of life. I believe we can and must shatter the injustice of silence by using both sets of these protections to advance and secure a true right to community. 

Communication is never a one-way street. Community is not an island that we exile someone to and declare they are integrated. For too long, we have placed the onus for communicating solely on the person with the greatest challenges. I have seen, as I am certain you have, how this has played out in the lives of many folks with intellectual and developmental disabilities, who I have known, loved, and learned the most from. We must expose and end this most endemic and devastating bias. As Anne McDonald, who spent most of her life on the back ward of an institution in Australia, wrote, there is no way for someone that is speechless and trapped to connect and communicate if others do not help them to make that leap. The ADA, in my view, must become the powerful launching pad that enables us to make that great leap, together. 

---

Image of the Communication FIRST logo, blue and green speech bubble icons intersecting. The intersection is black with white lines that symbolize text.

Bob Williams is the Policy Director of Communication FIRST, and has advanced the rights, opportunities, and supports for children, working age persons, and older adults with significant disabilities for over 40 years, including creating community living services in DC, helping to pass the  ADA, and administering the federally funded developmental disabilities and independent living networks. 

Rob Stone, now 23 years old, supporting Little Lobbyists & showing off all his advocacy pins

As the mother of a young man with complex medical needs and disabilities, health care means peace of mind: knowing that Rob’s medical and adaptive needs will be met. That Rob can take advantage of technology and medical advances, such as his augmentative and alternative communication (AAC) device. Rob’s Tobii EyeMobile gives him the ability to speak for himself, and he has a lot to say!

Access to quality health care hasn’t been easy for our family. Protecting Rob’s health took us on a 14-year odyssey through seven different private insurers, to the Affordable Care Act (ACA), to, finally, a Medicaid waiver. We learned the hard way that our country’s health care system is too byzantine, too fragmented, and it must be fixed. 

What else does health care mean to me? That one day soon, our protracted civil war over the right to health care will be over. That all of us will have equal access to technology and medical advances. Protecting the ACA is an important first step toward health care for all. 

The U.S. Supreme Court will hear oral arguments November 10 on the Trump Administration’s challenge to the ACA, a case that will decide its fate. We must hope SCOTUS recognizes health care as a necessity, not a choice. This case is the decade-long culmination of Republican efforts to undermine our health care, offering no plan to replace it other than a nebulous idea that the right “to choose” will give us health care--as if doctors treated patients with rainbows and lollipops. 

Acknowledging that health care for all is 100% necessary shouldn’t be this hard, but we live in a society of massive contradictions: If I could make a Venn diagram of conservative positions related to healthcare and "liberty," I’d find significant overlap among persons who claim to act from a religious imperative, deplore abortion, but are quite willing to endorse the use of the verb "to choose,” as in, "I should be able to choose not to buy health insurance," as though that statement has any connection with reality or responsibility, personal or otherwise. 

Choosing not to have health care is an act of gross societal negligence. By choosing not to, you demand that other people shoulder the bills you will inevitably incur when you require (at a minimum) emergency room care, unless you carry a card in your wallet that says you prefer to bleed out on the macadam after your car accident. We must all chip in, as well as support those who cannot afford to do so. 

Especially now, during a pandemic, our health depends on the health of those around us. Yet Republican leadership is still trying to convince us that health care is not a right, but an undeserved entitlement. We don’t have a right to remain healthy, but we do have a right to be sick and stay sick? Even die? Is that why Republicans want to overturn the ACA? Because the ACA takes away our right to “choose” poor health?

Make no mistake about it: Health care is a human right. Medical research and technology is the moon race of this century. Whenever I sit down with doctors or durable medical equipment vendors or pharmacists, I'm stunned by the sheer ingenuity of this country. For those who hunger and thirst for adaptations and answers to their medical problems, let alone righteousness, there's someone out there who's spent their working years thinking about your problems and how to solve them. All persons need access to these advances --despite cost issues--and we must dedicate ourselves to ensuring that access.

We must elect politicians who realize that critical investment must be made in health infrastructure, that health care is part of our larger, job-creating economy, and that we must give all citizens equal access to medical care. If we start from the perspective of cost, assuming that our collective resources are puny (they're not), we'll never get anywhere. If we point fingers of blame, we'll just self-destruct. We have to start from the perspective of humanitarian investment and what this investment will yield for our country, its citizens, and the world.

In the days leading up to the most consequential election in our history, ask yourself this: Have we become a country that looks to the future, or a nation of Hobbits, content to spend our lives by our own home fires, looking at the past? What happened to us? And, more importantly, what will happen to us?

---

Jeneva Stone is the blog manager of Little Lobbyists, and Rob’s mom.

It has been three years since I co-founded Little Lobbyists, a family-led group advocating for children with complex medical needs and disabilities.  We formed because the health care that helped kids like my daughter Xiomara survive and thrive was under urgent threat.  Along with an incalculable army of organizations and advocates, we fought back and won.  I will never forget being outside the U.S. Capitol in the middle of the night with Xiomara, surrounded by hundreds of people, when the “skinny repeal” of the Affordable Care Act was defeated by just three votes in the Senate, thus (momentarily) saving our access to health care.  I was relieved. While I celebrated that night by hugging my friends and joining in some of the crowd chants, I also knew the fight wasn’t over. 

Unfortunately, I was right.The threats to the Affordable Care Act (ACA) have been non-stop and have come from every angle with long-lasting damage through the courts, ongoing Congressional repeal efforts, harmful regulations, and a proposed budget that cuts funding to life-saving Medicaid programs.  Without the ACA, 20 million people would lose their coverage, 135 million Americans with pre-existing conditions would lose their protections, and 17 million would lose the coverage they got through Medicaid expansion.

I think about what all this means for Xiomara.  She just graduated from Kindergarten and turned six recently, two milestones that I prayed for but was never guaranteed.  With access to quality care (and a bit of luck), she has come a long way since spending the first five months of her life in the Neonatal Intensive Care Unit.  Xiomara was born with chronic, complex medical conditions affecting her airway, lungs, heart, and kidneys.  She uses a tracheostomy to breathe, a ventilator for additional respiratory support, a feeding tube for all of her nutrition, and a wheelchair to explore the world around her.  

While I am thrilled that Xiomara is thriving today, I am also worried because the access to medical care that has kept her alive is still under threat.  After failing to repeal the ACA in Congress, Trump and Senate Republicans have relied on the courts to do their dirty work for them.  President Trump made good on his promise to appoint judges who would overturn the ACA, and we watched Brett Kavanaugh, a nominee with a hostile record against those with pre-existing conditions and people with disabilities, get confirmed to the U.S. Supreme Court despite massive public opposition.  A federal lawsuit in Texas worked its way up to the U.S. Supreme Court, and we currently await the fate of the ACA. 

In the midst of a pandemic, the GOP-controlled Senate has likewise continued to confirm lifetime appointments for anti-ACA judges like Justin Walker and Cory Wilson.  These judges — some of them as young as 36 years old appointed to the federal bench for life— have the potential to make a lasting and devastating impact on Xiomara’s life.

As we celebrate the third anniversary of the defeat of the skinny repeal vote, we are also commemorating the 30th anniversary of the Americans with Disabilities Act and the 55th anniversary of Medicaid. These laws have made the difference in quality of life for so many, just as the Affordable Care Act has for my daughter.

And just like we did that night three years ago and every day since, we need to continue to fight back to protect our health care.  Please think about the courts, the ACA, Medicaid, health care, and my daughter Xiomara when you vote this November.

[IMAGE DESCRIPTION: photo of four Little Lobbyists families and two service dogs sitting on the ground in front of the U.S. Supreme Court steps]

Rico Winston and his son Israel

I am the proud father of an amazing little boy, created and designed by God, individually and perfectly, who has a diagnosis on the autism spectrum, and whose name is Israel. As a man of color raising a little boy of African ancestry who has a diagnosis on the autism spectrum, I worry about my son's future.

I'm concerned about how America and the world will look at him--what inequality and racial divides will be awaiting him? There are two things that Israel cannot change, and these are the color of his skin and the fact that he has a diagnosis on the autism spectrum.

As a parent it is my responsibility to Israel to recognize these two facts that he cannot change. These realities do not make him lesser or greater than another. The only thing that will make him great is the content of his heart and his willingness to accept and find value in others, no matter what differences they may have. I'm teaching him that individuality is a gift, and to accept and appreciate the individuality in each human being.

Each of us has had our pleasant, and I'm sure not so pleasant, experiences during the COVID-19 pandemic. One of the positive factors for me has been the opportunity to learn and observe Israel's strengths and weaknesses, as related to his education. Israel, will be entering the fifth grade this upcoming school year. He is accustomed to being in a physical classroom environment with his teachers and peers. Virtual schooling has created an uncomfortable and unfamiliar learning environment, accompanied with anxiety, not only for Israel, but myself as well. 

While Israel has had a tendency of being easy to please, during the pandemic, he has been a good self-advocate. Israel has been very clear with his occupational and speech therapists about his dissatisfaction with virtual learning, and that he needs in-person instruction. Israel would like to return to school in the fall, but, of course, how the Baltimore schools will proceed is not yet clear. 

As a parent and an advocate for my son, I am committed and obligated to find what fits and works for Israel's educational and spiritual development so that he may develop into the best human being he was created and designed to be. There has been a dirty, ugly reality swept under America's rug for so long, which some cannot see and some continue to ignore, and that is "the wrong color of skin," which has led to racial disparity and injustice. 

However, there has been a resurgence of the awareness that black lives matter, and that black disabled lives matter. I was a little boy when one of the amazing heroes who fought against social injustice and disparity for black lives, people of color, was  murdered. This magnificent hero and man was Dr. Martin Luther King.

In Washington D.C., on 28 August 1963, at the Lincoln Memorial, there was a timeless speech given by Dr. King, entitled,  "I Have a Dream." The sad reality--which makes this remarkable speech timeless – is, as a whole, America and every American hasn't reached that "mountain top," so it's still a dream, Dr. King's dream, and now my dream.

"I have a dream that one day on the red hills of Georgia, sons of former slaves and sons of former slave-owners will be able to sit down together at the table of brotherhood … I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.”

If I had the opportunity to add anything to the “I Have a Dream” speech, this is what I would add:

“I have a dream that...little black boys and black girls will be able to join hands with little white boys and white girls” and that all children, no matter the color of their skin, or if they have autism, are in a wheelchair, visually impaired or hearing impaired, no matter what challenges or differences, that they will be accepted and recognized as individuals, and valued for their unique individuality.

I am raising Israel so that he will be accepting of the color of someone's skin, and accepting of the differences and challenges of others. Some of these differences are apparent, and some are not. 

Tolerance, acceptance, advocating for self and others are gifts that I am sharing with my son. What gifts are you, as a parent sharing with your child? Prejudice and bigotry start at home. Like an inheritance or an heirloom, they are taught and passed down through generations. We all need to ask ourselves, what are we passing down?

There is only one race and we all belong to that one race. No matter our unique individual differences, we all belong to the same race, the only race, the human race.

I want to extend my appreciation and gratitude to Little Lobbyists, for all that they have done and continue to do for my son Israel and all children and individuals who have unique challenges and obstacles, as well as the support they have given me as a parent.

---

Rico Winston is a commitee member of the Friends of C.A.R.D (Center for Autism at The Kennedy Krieger institute), a member of The Spark for Autism Community Advisory Council, and the founder & director of The Israel Winston Family Empowerment Corp., a nonprofit organization. He is currently completing the Arc of Maryland’s Partners in Policymaking course to increase his advocacy skills for people with disabilities.

Israel Winston enjoys horseback riding and is currently a student of the martial arts.

Peter Witzler and family

We’re pleased to introduce a new series for the blog: “We’re In This Together” with our LL blog master, Jeneva (who’s also the author of our “Sharing the Journey with Jeneva” series). As parents, caregivers, and self-advocates who've struggled with unknowns, isolation, fear, stress, and more, we've learned a lot about adapting to and coping with what life throws at us. We've learned that human beings function best when we learn to rely on one another. We've learned happiness is always possible. We hope our experiences can help others cope with new challenges in the Covid-19 era. 

Peter Witzler, his wife Lisa, Teddy (8), and Jackson (5), live in Montgomery County, Maryland. He enjoys sharing his love of nature and food with his family, and brewing a new batch of beer with the East Rockville Brewers Guild. 

Tell me about your family. 

Summer is an epic time for my family. Our long running joke: We’re all part fish, so summer involves lots of time at beaches, lakes, and pools. Jackson and Teddy would spend all day in the water until their lips turned blue if we let them. During the winter, we love a good Marvel or Star Wars movie marathon in front of the fireplace for what we call a “Day of Sloth.” Jackson has a creative and adventurous personality, especially in his efforts to keep up with daredevil brother Teddy. Teddy has embraced his role as big brother and helper, especially as he enters 3rd grade as a “big kid.”

Tell me about Jackson’s medical needs and disabilities. 

Jackson was born with spina bifida and uses leg braces and a walker or crutches to get around. He uses a BiPAP machine at night because he has severe obstructive apnea. BiPAP stands for “bilateral positive airway pressure,” and the machine assists with Jackson’s breathing.

How did your journey with Jackson begin? What were your feelings? What kept your love for your child burning bright and fierce? 

Despite excellent prenatal care, Jackson’s rare form of spina bifida went undiagnosed throughout the pregnancy. The entire delivery room went silent when he was born, and our journey began. Without time to prepare and process our new reality, I felt the weight of despair and fear wash over me. These were eventually replaced with strength, resolve, and hope as we learned more about Jackson’s condition, began setting goals for his health, and committed ourselves as parents to fight like hell to give him the best chance possible to live his best life.

What were some of the new challenges in your life, and how did you learn to adapt?

My wife and I are planners and schedulers, so we had a plan for everything leading up to Jackson’s birth. We quickly learned the reality of an old military adage, ”No plan survives first contact,” and learned to let Jackson and his health become our north star. At the same time, we’ve had to continually adjust to our “new reality” as outliers. That status has actually strengthened our family bond, as we learn to love and live with each other in close proximity. Marching to the beat of our own drum has helped.   

How did you tease out joy in the midst of your most difficult moments? 

We learned to find the silver lining and humor in everything. Four weeks into our second hospital stay in three months, I remember looking at Lisa during one of Jackson’s diaper changes and saying, “Do you realize how much money we’ve saved on diapers?!?!” During hospital stays, diapers are provided as part of necessary medical supplies. 

Looking back at life with Jackson, what's your advice to other people trying to cope with the uncertainties of the pandemic?

We had to learn to take time for ourselves. It’s impossible to take care for someone else unless you’re taking care of yourself. For me, that meant finding time to go for a run and recreating Rocky training montages during our six-week stay at Children's Hospital of Philadelphia. Lisa found time to leave the hospital and get outside--fresh air does wonders! Caring for someone can be exhausting because you repeatedly displace your own needs for those of another, whether that’s providing medical therapies, or just helping your kid with a Zoom meeting for school (last week), or virtual camp (this week). 

It’s easy to get lax with routines and bargain with yourself about doing such and such later, or the next day. It’s also easy to get mad at yourself or feel guilty for not “doing more” with your time. To quote Admiral Ackbar from Star Wars, “It’s a trap!” You do, in fact, feel both ways: laid-back and guilty. I’ve developed a mantra for this: “Man, this feels crappy. It’s OK to feel crappy. And I won’t always feel crappy about this.” 

What’s your top advice for moving forward, given that the pandemic may not resolve itself soon?

When the pandemic started, we were, like, “I got this. This’ll be easy-peasy-lemon-squeezy.” I mean, we’d spent six weeks within the four walls of a hospital room; we could do quarantine at home. What’s been hard, though, as we move into phased re-openings, has been watching our friends and families break their quarantine bubbles and re-enter the world. We’re left on the sidelines. Jackson’s health and this virus are setting our parameters. We’ve had to re-calibrate what’s possible: We go on long hikes every weekend and spend loads of time outside during the week. Instead of going to the pool every weekend, we bought a small inflatable one for the backyard. Since I’m no longer able to travel for work, we decided to adopt a dog--something we’ve wanted to do for a long time. Instead of visits to the lake with family, we do Zoom, Facetime, and Google Hangouts. This summer we’re going to spend a month driving an RV to Mount Rushmore (to see Teddy’s namesake, of course), and Yellowstone and Glacier National Parks, channeling our inner Clark Griswold. 

What have you  learned about human interdependence, that we're all dependent upon one another?

I think we’ve all learned the importance of “me” time and recharging our batteries. Everyone gets a chance to chill out on their own (Lisa and I included). It’s been important for us to set some routines--we hold a “morning meeting” to discuss our day plan and involve everyone in decision making. We also try to “debrief” each day; each of us states their favorite and yuck part of the day. We are all in this together.  

Liz Randolph attends Monroe Community College where she is completing her associate’s degree in Health Studies. Her goal is to become a nurse practitioner. She is a member of the Phi Theta Kappa Honor Society and the Co-President of the Holocaust, Genocide, and Human Rights Project at Monroe Community College. Her passions include science, working with children, and advocacy. She lives in Rochester, New York.

Tell me about yourself.
When I become a nurse practitioner, I would love to help ease the transition between pediatric and adult care, as that has been nothing short of a nightmare for me. Furthermore, the psychosocial needs of young adults are not being met in either setting, pediatrics or adult care, currently. Our healthcare system is in desperate need of help. 

Before deciding on an NP practice, I wanted to become a child life specialist. I am a firm believer in family-centered care, but I quickly realized that I would not be content without being hands-on with medical care-plus, I love science! 

I have an amazing family who is always there for me, and a great group of friends. I am so thankful for my support network and do not know where I would be without them.

Tell me about your medical needs and disabilities.
I have dealt with medical issues my whole life. I have mitochondrial disease and Ehlers-Danlos Syndrome; these have caused a slew of issues from hypotonia (low muscle tone) to motility disorders (digestive issues). I had my feeding tube placed when I was eighteen months old, and I am now twenty-one. I also now have a broviac (central line), and a cecostomy tube, which aids the function of my digestive tract. 

What’s the upside of tube feeding? 
The biggest upside to tube feeding is my life. I would not be here today without my feeding tube. Everything that I do is because of my feeding tube, not in spite of it. It has enabled me to be fed, nourished, and to have the energy to accomplish the things that I want to do. My feeding tube is not the enemy. Constantly striving to get rid of it is unrealistic at this point; instead, I want to accept where I am today and celebrate the very thing that has given me life.

Have you faced any bias as a person who depends on tube feeding? How have you dealt with that?
One time I had a surgeon say to me, "I'm sorry, I know that everyone's goal is a tube-free life." This comment stopped me in my tracks. That is most definitely not my goal. 

It isn’t realistic at this point. There is always a chance that the day might come, but it is an even bigger possibility that I will have my feeding tube for the rest of my life. If I were to fixate on the unrealistic goal of a tube-free life, I would not be able to learn to love myself the way I am. 

Holding yourself to an unattainable standard is not healthy. It’s no different than the unrealistic standards for beauty. I will not wait around for a day that may never come to strive for success. I’m not saying that it’s a bad thing to work toward tube removal, just that it should not be the constant focus. It’s not always realistic, and, instead of apologizing, we need to promote acceptance and encourage others to understand that it’s okay to be different. Learn to thrive where you are instead of waiting for things to change. 

What do you consider your first act of self-advocacy?
When you grow up in and out of hospitals, it is only natural that your first acts of self-advocacy begin with doctors. I learned quickly that in order to keep myself safe that I had to be on top of my health care, and that doctors do not know everything. I have been advocating for myself in that regard for as long as I can remember. This snowballed as I grew up and realized that my story could help people. 

How has advocacy added meaning to your life?
Advocacy has given me an outlet to do what I love: Help other people. It has given me a way to show others that they can do something when everyone else is telling them that they cannot. I love being able to show others that they can thrive. There is nothing more fulfilling than watching the relief wash over a parent who is terrified about their child’s future, or  watching a child’s face light up because “We match!”, or making a friend who has walked the same path as I have. Advocacy has also helped me find my voice. Advocacy has helped me use my story to turn even the most painful parts into something meaningful. 

If you could define advocacy in a single sentence, what would be your definition?
Advocacy opens the door to a better world in which we all listen to and learn from each other. 

---

Jeneva and Robert Stone on a recent visit to the Senate Office Buildings.

We hope you enjoyed this installment of Sharing the Journey with Jeneva, a new feature on our Little Lobbyists blog. Through these interviews we will share the advocacy journeys of caregiver/parents and disability self-advocates, inspiring us to forge ahead together. Send an email to Jeneva if you have any questions you'd like to see, or if you'd like to be interviewed for a future installment of this series! 

Jeneva Stone is the manager of the Little Lobbyists blog. She's worked as a teacher, a government editor, and a Hill staffer. Jeneva is also a writer, with numerous publications in poetry and nonfiction. She lives with her son Robert, who has complex medical needs and disabilities, her husband Roger, their two cats and a dog in Bethesda, Maryland. Her second child, Edith, is currently a student at Middlebury College. 

Our Little Lobbyists families began their whirlwind day in the Capitol by attending a press conferences held by their hosts with other guests for the 2020 State of the Union Address.

Last week four of our Little Lobbyists families were honored to attend the State of the Union, representing all of our families of kids with complex medical needs and disabilities. We asked them to share their experience with us. 

Rep. Wexton with Aire and Walewska in front of the Capitol.

Walewska Watkins and her son Little Lobbyists Aire were guests of Representative Jennifer Wexton (VA-10): 

I’ll remember Rep. Wexton’s gentle voice as she took my son Aire by the hand into the Capitol, Rep. Dingell’s sincere pain at hearing terminal patient’s stories, Sen. Stabenow’s sweet joy when speaking about her granddaughter’s fight against congenital heart disease, and, of course, Aire’s little boy pride at standing up for health care (“Because it’s health care, not health careless.”) I’ll treasure the LatinX community’s delight at hearing my Congresswoman speak Spanish and my voice advocating for the protection of our children with preexisting medical conditions and disabilities.

Sitting with the main act beneath me, I couldn’t help but notice the state and territorial shields that decorate the ceiling of the House Chamber. As a Puerto Rican islander, I was delighted by the irony that our territorial shield stood high above him—a silent remainder of the thousands who unnecessarily fell ill, died, or were displaced after Hurricane María and who will forever hang over his head.

I have no doubt that the main act doesn’t believe his own words and believes they can distract or destroy us. He believes this, because he thinks the State of the Union is just a speech he gives. If he really wanted to defeat us, he should have cancelled the show so we couldn’t spend the day connecting with patients, families, and activists from around the nation. If he wanted to win, he shouldn’t have given us the chance to learn about each other’s initiatives, strategies, and success. The State of the Union is what it is, but the State of our activism is United.

Andrea her daughter Louisa and her husband Tom with Senator Stabenow.

Andrea Pietrowsky, mom of Little Lobbyists Louisa, was the guest of Senator Debbie Stabenow (MI):

Tuesday evening was certainly unforgettable. It was an honor to attend as a guest of Senator Stabenow, and represent not only my daughter’s personal health care story but stand for the rights of children with complex medical needs and disabilities everywhere. 

As a guest I was obligated to follow the formalities of Congress, and the rules on the back of my ticket—which interestingly indicated to remain seated and not to applaud. My inner dialogue said, “Yes, I can do this”.  Seated in the gallery between two friendly and conversational individuals, I quickly learned they too both had personal preexisting stories of their own. 

I was eager to hear how President Trump would explain his commitment to protect Americans with pre-existing conditions when in fact everything he has done since taking office was aimed at decimating the Affordable Care Act and taking away those very protections. However, his words were hollow and contradictory. He specifically said, “A good life for American families also requires the most affordable, innovative, and high-quality health care system on Earth.” But where on Earth would we find this without legal protections from discriminatory health insurance practices? 

He spoke of an executive order he signed that would call for medical transparency of costs, but that’s not even useful without coverage of all pre-existing conditions. How could one search for a “bargain” on something as costly as open heart surgery and inpatient recovery? Or the complex birth of a premature baby? Or go comparison shopping for unplanned emergencies? 

The topic of prescription drug costs was no better, actually much worse. We all heard his disingenuous call to action, “Get a [bipartisan prescription drug pricing] bill on my desk, and I will sign it into law immediately.” But we know that Republican Senator McConnell has been sitting on H.R.3 - The Elijah E. Cummings Lower Drug Costs Now Act for several months.

Another disappointing moment was the abandonment of a commitment to maintaining and improving public education, which is essential for all children, including children with disabilities. Our president referred to public education twice by calling it “government education” purposely creating a negative connotation to sell it as some sort of form of socialism. 

It was sinking feeling to step away from a once-in-a-lifetime opportunity questioning if a single truth was told among so many blatant lies.

Leslie with her son Jonathan and Senator Schumer

Leslie G. and Little Lobbyists Jonathan were the guests of Senate Minority Leader Chuck Schumer (NY)

“The day was an exciting whirlwind of activity! Members of Senator Schumer's staff really went out of their way to accommodate us and ensure we had a special day. Everyone was gracious, incredibly helpful and attentive. It felt surreal to be in Senator Schumer’s office, he even personally wrote a note to excuse Jonathan from school for the day! It was an exciting experience we will remember for a long time! Jonathan was so keyed up, even though he was tired, it took him until almost midnight to get to sleep.” Comments taken from dictation.

Elena and Xiomara with Speaker Pelosi

Elena Hung and Little Lobbyists Xiomara were the guests of Speaker Nancy Pelosi:

It started with me picking up Xiomara from school and taking the train down to DC as we always do. We have done this trip so often and yet, no matter how many times we walk out of Union Station, the moment I see the Capitol for the first time still takes my breath away. Every single time. It might be my immigrant roots or my stubborn optimism, but the sight of the dome will always be a special treat for me.

I appreciated the opportunity to attend the State of the Union, to be in that room and experience history taking place. But I heard the same lies you heard, and I saw the same Republican members you saw chant "four more years!" without any regard for how their policies are harming and killing our loved ones. 

It was disgusting. I sat through all of that, arms folded across my chest, shaking my head. I may or may not have forcefully called out "that's not true!" several times. I did not stand for the president as he entered and left the chamber. I did not clap as he boasted about his cruelty. Instead, I said a quick prayer for all those who have been terrorized because of him.

But this shameful spectacle does not define my evening.

Immediately before the SOTU, Speaker Pelosi hosted a dinner reception for House Democratic members and their guests. I ran into so many members and so many staffers I have worked with. Many of them have watched Xiomara grow up over the years. Xiomara recognized them too.

Throughout the reception, I also got to meet other invited guests. A majority of them were health care advocates doing amazing work. Being in a space like this filled with some of the most powerful and generous people in the country can be incredibly intimidating and stressful, but instead, it felt like a reunion with chosen family who really, really love my kid. 

I had shared Xiomara's accessibility needs ahead of time, and we had a team that was assigned to us to ensure our comfort. I felt so supported in every way knowing Xiomara was being included with so much thoughtful planning. And that was really special.

As I headed back home that night, I was left with this: in these dark times, there are still lots and lots of good people doing good work. There are lots of people who care a lot, and they are not giving up. Neither should we.

Elena and Xiomara on the Speaker’s balcony in front of a spectacular view of Washington D.C. at night.

** CN: hospice care, loss, sibling loss, grief, death of child, description of child death **

February 3, 2020

I am sitting at the IUPUI campus Starbucks. Well, they don’t call it a Starbucks. They call it “Barnes & Noble Cafe” since it’s in the Barnes & Noble bookstore, but they serve Starbucks coffee, make all the same drinks, and sell all the same Starbucks merchandise. The only real difference is that they don’t take Starbucks gift cards. I tried to pay with one for my grande iced white chocolate mocha and the barista regretfully informed me they cannot accept them since it’s a “Barnes & Noble Cafe.” She proceeded to tell me how sorry she is as often students come in with no payment method besides the gift card. She described a student who came in 30 minutes before me and only had the gift card. She said she paid for his coffee. 

She did not offer to pay for mine.

Which is fine. I’m not looking for handouts and I, somehow, have the funds to pay for a $5 coffee. Even so, I wonder if she would have paid if she knew why I am here. What day it is. Why I do all my writing at the “Barnes & Noble Cafe” instead of the comfort of my house not 20 mintues away. How I cannot stand to walk into my own home, quiet and missing its life force. 

February 3, 2019

The process of watching my brother die takes longer than I expect. For starters, I never thought he would make it past age one. Here he is at seven, defying the odds. Having no choice but to enter into hospice on January 1st, 2019, I anticipated him to die within a week. Somehow, he stubbornly stayed alive over a month. He spent all seven years of his life proving everyone wrong and it seems he’s going to do that in death too.

It’s the first Sunday of February. We know we have to “pull the plug,” as they say. He’s been unconscious for over 24 hours. The doctor tells us he’s already gone but the ventilator will keep his body going until it becomes painful. It will be better if we turn it off. He will go peacefully.

My family and I gather around him, holding him as we take the final moments. The hospice nurse, doctor, and music therapist stand nearby, as well as one of his personal doctors who made the trip out to be with us. She didn’t have to, but she wanted to because she loves us and, more importantly, she loves my brother. 

My brain is buzzing as they say it’s finally time. Shut the ventilator off. 

The doctor is supposed to hit the power button. She can’t figure out how. I’m closest and my brain is buzzing, so I hit the power button and the ventilator shuts off and I watch my brother’s lips turn blue and the color drain from his face and the doctor come up with the stethoscope and announce that he’s gone.

The humidifier alarm on the ventilator goes off, a little too late to announce that something is wrong. 

No one can figure out how to turn it off either, so I do that too. 

The panic sets in immediately. My little brother, my joy, the person I have planned my life around, is gone. He’s gone and he’s never coming back and while I know it’s not my fault, I’m the one who “pulled the plug.” 

I hit the button that stopped the air from entering his lungs, that took his body away, that made it so I can never touch his hair or hold his hand or kiss his forehead or hug him tight, tight, tighter. 

Just moments after he was born, I began preparing for this moment. I knew he could be taken away at any point, that he was more fragile than a typical person, but that doesn’t mean I can make sense of why or how this is happening. He’s seven years old. He’s too young to die.

His death is the most peaceful thing I have ever seen. He does not stir or jerk or react in any way. Slow, slow, slowly, he passes away. He was already gone by the time I shut the ventilator off. His body was empty of the soul that made him the most incredible, loving child- the greatest brother in the world. 

Nothing is left but the shell, but the shell is what I recognize. The shell is what I have played with and kissed and hugged all these years. It’s not easy to say goodbye to the shell.

For the first time in seven years, the house is quiet.

No ventilator breathing in the background of conversation. No feed bag for the GJ-tube quietly whirring if you listen hard enough. No Mickey Mouse Clubhouse blasting from the TV. No laughter. No little legs kicking against a wheelchair. No teeth grinding together. No talking. No communication pad giving a response. 

The house is quiet. Too quiet. The world is quiet. 

February 3, 2020

The world is loud. 

I sit in the not-Starbucks. Impeachment trial updates flash on my phone. The Iowa caucus is underway. Coronavirus takes more victims. Another person tries to pay with a Starbucks gift card...

My brother spent his life fighting his genetics, fighting to live. Every day was a testament to his strength and resolve. Every day he proved this world is worth something. He was not expected to live, but he did so anyway.

I am expected to live. 

Despite the pain and emptiness and quiet in my soul, the world goes on. The world remains loud. I can let the pain and emptiness and quiet take me over and drag me away from the world my brother fought to live in, or I can fight. I can be louder. 

As the one year anniversary approached, I spent a lot of time thinking about what I want and who I want to be. What do I want to stand for? How do I want to fight in this world that is, apparently, worth fighting for? The answer is still a work in the making, but I know at least a few things. I know, without a doubt in my mind, that I want to make a difference. I want to create a better world for children like my brother. While my power is limited to the few resources at my disposal, I am going to do what I can. I can share my brother’s story and I can encourage others to be heard, to make sure those in power know we will not stop until every little boy and girl gets to live the longest, best life they can.

I will stand for health care rights so people like my brother can have the treatment and care they deserve. My brother may have been the most stubborn little boy I have ever met, but that resolve alone would not have been enough to keep him alive. Without access to health care and the wonderful doctors, nurses, therapists, and teachers who took care of and provided for him, he would not have survived seven years. 

The Trump administration recently unveiled its latest plan for Medicaid, Healthy Adult Opportunity, which would turn the program into a block grant. By doing this, states would no longer have the federal commitment to serve eligible individuals and families, leaving millions without healthcare. Under the block grant program, states would have the right to cut several benefits, including coverage for prescription drugs, copays, and treatment services. 

Currently, 1 in 5 Americans are covered by Medicaid, including 45 million children. One child being negatively impacted by this plan is too many, but the consequences can easily reach millions. Medicaid is essential for people like my brother to survive and function. Having a special needs child is stressful enough on its own; no family should have the added struggle of wondering how they will afford necessary healthcare and services.

With the upcoming election, I beg you to stay informed of the policies at play. What are the candidates saying? Do they have the interest of the American people at heart? Do you want someone in office who will take funding away from programs that help children thrive and survive? 

I certainly don’t. 

It’s February 3, 2020, and my brain is still buzzing. My brain is buzzing because the fight is not over. My brother showed me this world is worth fighting for. Children with disabilities are worth fighting for. I will fight and I will be heard and I will not stop until those with disabilities have the rights they deserve. 

Call your representatives. Post your stories. Vote in the election.

Be louder than this loud, loud world.

photo of Sydney, the author, with her brother Colton

Antonis Tsapatakis by Nicholas Samaras http://underwater-photography.gr/portfolio-item/athletes/

I’ve seen this meme on Facebook a few times. If you can’t see the graphic, it’s a man underwater, standing beside an empty wheelchair. The caption reads “The power of water. The most beautiful picture you’ll see today.”

People share it because it feels inspirational that water is an equalizer, allowing the man to be “free” from his wheelchair. The media loves a good “overcoming the wheelchair” photo/story!

I’d challenge you to reconsider how you view physical disability though. Many wheelchair users don’t see themselves as needing to be fixed. As one writer said, “words are what confine and limit us – not our chairs, which are actually pretty great.” How might society’s attitudes about disability change if we worked towards celebrating people as they are, instead of viewing physical disability as lesser-than? We’d see less pity and more accommodations, more accessible venues.

Now, I’ve been guilty of this. My son Julian uses a wheelchair part-time. We used a stroller for years, past the age most kids stop. When he outgrew his umbrella stroller, I started looking into a “special needs stroller.” I remember discussing this with another mom in the physical therapy waiting room one day, and she asked why I didn’t just get him a wheelchair. I said I was worried about being judged for having a child in a wheelchair that could walk. In my head I thought, he’ll be judged for using a chair; people will see him as “less than.” And though I didn’t say it that day, if I’m being completely honest with myself, I didn’t want to see my child as “disabled enough” for a wheelchair. A special stroller seemed less … serious somehow?

But her words stuck with me, and I broached the subject to Julian’s physical therapist during the Marfan Walk, as Mark pushed Julian in one stroller and I pushed our daughter in another. His physical therapist agreed, and about 15 months (and so much insurance headache) later Julian had his wheelchair.

Julian with his wheels and his older brother Miles on a walk.

I’d thought of the chair as holding Julian back until the first time I saw him maneuver at the wheelchair clinic. It was then I realized that the chair is what’s allowing him to move forward (no pun intended). In a stroller, I always had to be there, pushing Julian along. With the new wheelchair and his Smart Drive, Julian can get around all on his own. With the chair, he doesn’t have pain stopping him from participating in activities. His peers are very understanding of the wheelchair, too (and often, over-eager to push him). The chair makes him free.

Julian doesn’t see using a wheelchair as a “second best” life. Recently when someone at church suggested that he’d be able to walk in Heaven someday, when his body is made perfect, Julian was hurt because his body is perfect now, just the way it is.

As parents, it’s painful to watch our children go through hard things, and I can appreciate that able-bodied people may have a hard time understanding that disability isn’t inherently bad. But when you see a meme like this, consider what it’s actually saying about disability before you share it. Remember: your kids are watching and listening to you, and the way you talk about their bodies will to set the tone for how they see themselves. Don’t let them think you believe their bodies are anything less than perfect.

---

Maya Brown-Zimmerman is a stay-at-home mom to four kids with a variety of diagnoses including autism, Marfan syndrome, and a brain injury. She has a masters degree in Public Health and is the patient adviser to The Marfan Foundation's Professional Advisory Board. In her spare time she's going back to school, is a medical drama TV junkie, and enjoys reading and cooking. Maya blogs at Musings of a Marfan Mom. 

I had taken my daughter Penny to the Metropolitan Museum of Art in New York City. After a morning of Penny marveling at the masterpieces, we stopped for lunch in the cafeteria. Penny has a rare neurological disorder called Aicardi Syndrome. She uses a wheelchair, has a g-tube, has intellectual disabilities and an inability to speak. When kids see her, they tend to notice her. Reactions can vary widely.  

As a family walked by us, a young girl turned toward Penny. A moment later, the mom came over and asked if her daughter could introduce herself to Penny. "Sure! Penny loves meeting new people!" I answered. The girl introduced herself and asked if Penny could talk. I told her that Penny couldn’t, but loves being spoken to. The girl asked Penny what she saw in the museum, and I told her Penny loved the colorful windows in Medieval Art. "The windows are my favorite! Well, Penny, I have to go. Have a nice day!"  

That moment was the highlight of my month. Penny can’t initiate her own social interactions, and rarely has the pleasure of other children approaching her with genuine interest and joy. I don't know if the girl was taught the kind of empathy and curiosity that she demonstrated, or if she's just miraculous like that, but the world needs more people like her.

If you know a child with disabilities, there's a good chance that child has been ignored, mocked, and/or avoided by a lot of children, and even adults. Penny may not understand the fine details of many social interactions, but she knows when a friend arrives. You can see it on her face with her wide smile and her gleeful vocalizations.

The Americans with Disabilities Act (ADA) facilitates access to buildings, education, and fair legal treatment. But many children with disabilities lack access to loved ones, support networks, and a sense of belonging. We’ve been blessed to have a core group of friends and family who’ve decided that Penny will always be a part of their lives. But if you took this social access away, Penny would be devastated, just as she would be without the ADA.  

Penny needs people who see her as a loved one, but she doesn’t need those who see her as a project, a prop, or a character reference.  Here are a few truths I’ve learned about being a friend to Penny:

#1 If you have an end-date in mind (community service hours, etc.), you're in it for you, not for Penny. Occasionally, parents tell me that their child has to do a community service project and would like to visit Penny. My response is: If your child is interested in learning about and developing a relationship with Penny, ok. If your child is going to put in the necessary hours and then cut out, my daughter does not exist to help your kids reach their extracurricular requirements.  

#2 If you'll stop coming if you can't post about it on social media, you're not in it for Penny. You’d like to visit Penny? Great! But please ask me or my wife before posting photos. I've experienced too many instances of people taking selfies with Penny and posting them all over social media. Penny is not your “Disabled Best Friend,” and she’s not a chapter in your Facebook Story. And she is certainly not a way to demonstrate to your friends and family how wonderful you are for developing a relationship with this girl in a wheelchair.

#3 If you can't think of one reason why you're looking forward to your time with Penny, you're not there for her. Recently, a child at a nearby school did a project on disability rights and cited her friendship with Penny, using Penny's name. Aside from the fact that we were not consulted before our daughter was used for this, Penny has virtually no relationship with this girl. Please don’t exploit a non-existent relationship with a disabled child for a school project. It should go without saying it’s a pretty horrible thing to do.

#4 If, however, you keep thinking about her, your child keeps asking about her, and all you think about while driving to see her is that laugh she makes when Peppa Pig is on, then Penny is waiting for you.



I wish I were a battery, so I could plug in and recharge. I posted this on Facebook today, and a kind friend responded, as one does, that humans recharge by unplugging. I said I didn't know about that.

I do wish I could recharge by being plugged in. That would be so much easier than plowing through all the hanging fronds and threads of suggestions about self-care. None of the social service agencies with which we're connected allow parents any time for self-care. It's anathema to the entire system of caregiving. Self-care is, indeed, a pleasant fiction that others indulge in for my sake.

Walks, runs, massages, mani-pedis, dinners out alone, time with friends. Those occasions arise, yes, but I've gotten to the point after 20 years of this at which self-care seems a distant reach.

To be honest, for me, self-care is ignoring things (paperwork mostly) that I just don't feel like doing today or any particular day. So I let my mail pile up, open it and let some of the stuff pile up elsewhere, shuffle it into different piles, continue to pick out the items that seem the most important or urgent or both, and letting the rest of it sit. Every 3 or 4 months, I take a day and go through all of it at once.

Tomorrow, I'm driving my daughter back to college in Vermont. Today I grabbed a box and stuffed all of that paper into the box, all the clutter in piles all over my home office. It's satisfying to see it all in one cube.

I've had a lovely summer being a parent one last time to two children: Rob and Edith. Edith has just finished her freshman year at Middlebury, and she definitely needed some additional oversight coming home on a couple of different fronts. The household was full again. We were one smoothly oiled machine--walking the dog, taking care of the cats, dishwasher dirty & clean, garbage out, boxes cut up, groceries, dinners made. Oh, yes, and I taught her to drive this summer--all 60 of the required hours. She takes her driver's test tomorrow on our way to Vermont. That's a long story and not that interesting.

She's going to take an internship, she says, next summer. As I told Rob tonight at dinner when he seemed glum, now is the time for each of us must separate to grow. We can receive emotional sustenance from each other, but, eventually, we grow by coming apart. We'll always convene again as
a family, we'll always spend time together.

Yesterday I sent an essay into a call for submissions, an essay I've been working on in fragmented time all summer. I hope it's good enough. Today, I submitted another essay in which I have more confidence. I need to submit work a whole lot more to make any progress. I need to write more and complete long-term projects.

Rob needs to take his college "challenge" courses at Montgomery College. He needs to go to Spirit Club, his disability gym. Rob needs to write more poetry and perform it at some local reading series. And, most importantly, he needs to continue to advocate for health care and disability rights.

And that's where I've found my greatest respite and self-care: advocacy. Last December, as he was transitioning from high school, Rob identified advocacy as one of his transition dreams. So I signed him up for Little Lobbyists and for the Rare Action Network. We've plugged into a number of other advocacy groups as well, looking for our home.

When I'm advocating for health care, for disability rights, for funding for rare disease, I feel alive. I never thought advocacy would be for me until I had to jump into it to assist Rob and his own dreams. Its community. It's reassurance. It's projecting the better parts of me outward in service of others. This selflessness feels better to me than any of the other "selflessness" in which I've engaged as a caregiver.

Abnegating my "self" simply as a mother, on a routine basis has a draining effect on me. In the WDC area, when people talk about being "plugged in," they mean they know a lot of people, that they're influencers. This self-identification as plugged in can seem selfish, a form of bragging, a way of fulfilling personal goals by using other people.

But the advocacy I've found in these last seven months has been a group effort with no thought of personal reward. It's all moms and dads, all parents of children who need us to stay at home, to stay healthy, to thrive. No other "self-care" has been as electrifying to me as this: being plugged in. Like a battery, I'm recharged.

Reposted with permission of the author, Jeneva Burroughs Stone, from her personal blog “Once Upon a Caregiver.” Jeneva is the leader of the Little Lobbyists 16+ community for older teen and adult Little Lobbyists and their families.

Jeneva with her son Robert and husband Roger advocating for Medicaid in front of the Capitol with members of Congress and Little Lobbyists mom Laura.

Jeneva and her family with the Little Lobbyists at a Town Hall with Senator Elizabeth Warren.

Photo of a smiling little boy standing in front of greenery holding a handmade “Class of 2032” sign.

I never thought I’d get to write this to you, and so I’m not sure quite what to say. You start kindergarten tomorrow, your first day of school, and in a life filled with so many firsts we never expected, this one looms large. It feels significant, heavier, somehow, than things that should logically carry far more weight. First laugh. First words. First open heart surgery. First time on bypass. First frantic run through hospital hallways to make sure you hadn’t suffered a massive stroke. All of that, and this is the one that’s bringing me to my knees.

First day of kindergarten.

Since the day we found out that your heart had formed so uniquely, that your organs were scattered like leaves in the wind, I steeled myself against the worst. I knew I’d see you covered in bandages, tethered to machines that would keep you alive when your tiny body wasn’t strong enough on its own, and so I rearranged the furniture in my dreams to fit into a much smaller space. Instead of college, I quietly, carefully let myself hope that you’d take a step one day. Instead of a driver’s license, I let myself look ahead as far as your first birthday, maybe. I couldn’t bring myself to take the tags off your pajamas until you’d actually grown into them, so there’s no way I was planning your outfit for the first day of school.

That outfit, the monster shoes and the dinosaur backpack with the extra t-rex patch and the shirt that proudly proclaims that you are writing your own story? It’s laid out carefully, waiting for tomorrow, and I’m sitting here wondering how you’ve come so far, wondering how I can possibly fit everything I want you to know into this black and white when my own heart is bursting with a thousand colors.

You are strong. Your heart has seen the light of day four times now, stopped twice for hours on end and started up again to power you farther and faster than we ever believed possible. Remember after your last surgery, when you realized you could run without getting tired and you took off down the boardwalk, arms outstretched, screaming that you were Superman? That’s the strength I want you to carry with you while you head into that school tomorrow.

You are kind. This, more than anything, is the measure of the man I’m starting to let myself hope you’ll be one day. You know what it means to hurt, so make sure you keep your eyes open for kids around you who might be hurting. You know how it feels to need someone to speak up for you, so now it’s your turn to use your voice to speak up for the vulnerable.

You are brave. I don’t mean you’re never scared; that’s not real brave. You’re the kind of brave that’s faced the darkest fears and held tight to my hand while you stared them down. You’ll have to let go of my hand tomorrow, but just remember that you know how to look fear in the eye and come out the other side. You’ve done it before. You can do it again.

I’ll be waiting for you at the end of the day, at the end of every single day from now until forever.

Happy first day of kindergarten, Ethan. You’re my favorite reason to hope.

Love,
Mama

Reposted with permission of the author, Ali Chandra, from Hope for Ethan