Learn to fight, plead alongside Violet

One thing my wife Emily and I haven’t learned in 2020 as we prepare to welcome our sweet Violette into the world is how much advocacy is becoming a daily imperative for parents of children with needs. specials.

We reflect on our year with Violet each October, recognized as Down Syndrome Awareness Month, and in 2022 we marvel at the incredible resilience of our 2-year-old. Through the wild ride of joys and sorrows of 2022, she’s made it clear that she’s a fighter. She deserves the same from us as we learn to speak and act in her name.

Violet rang in the New Year with a triple cocktail – COVID-19, respiratory syncytial virus (RSV) and rhinovirus. She spent eight days downtown at Children’s Hospital of Philadelphia. Children like Violet, with her weak muscle tone and narrow airways, often struggle to maintain healthy blood oxygen levels as they battle viruses that leave them feeling exhausted and congested.

Violet has trisomy 21, an extra copy of the 21st chromosome. This extra piece of genetic material causes the features associated with Down syndrome in about one in 700 babies born in the United States. Children with Down syndrome are prone to health problems, low muscle tone, and cognitive delays.

After:Upcoming Violet in October for Down Syndrome Awareness

After:Because of Violet, the masking issue is personal

The low tone makes it difficult to cough hard enough to clear phlegm. The narrow trachea and nasal cavities do not allow as much air to reach the lungs. A normal blood oxygen level is usually 95% or higher. Between 91% and 95% is considered cause for concern. Below 85% can negatively affect the brain. Without oxygen support, this is where Violet’s O₂ level would head, especially when she slept. So for over a week she was pricked, pushed, pricked and tested, all while being attached to an oxygen source and a pulse machine until she could eat, sleep and play in safely in ambient air alone.

Violet had moments of fatigue where the arrival of a nurse in her room was enough to make her look up, she almost always dismissed them with a smile, a wave and a friendly

And while, of course, Violet had moments of fatigue when the arrival of a nurse in her room was enough to make her look up, she almost always dismissed them with a smile, a wave, and a “goodbye.” ” friendly. “as if her illness could not hold her positivity and joy for long.

Violet was still learning to walk when she entered the hospital. During my days and nights there, I tried to get her to get up and move around in bed to keep her from losing ground. In addition to strongly advocating for Violet’s needs during the hospital stay, Emily went the extra mile by having the nurses bring a play mat so Violet could do physical therapy and engage in activities that improve core strength, motor planning and dexterity.

Violet Anastasi sits in her room at Capital Health in Hopewell NJ where she was admitted in March with human metapneumovirus.

Upon leaving the hospital, she resumed one of her favorite exercises – climbing the stairs – without missing a beat. Her parents, on the other hand, have yet to fully recover from eight days of dealing with doctors, sleeping on hospital couches, eating hospital food, juggling work and household responsibilities. and figuring out who was spending the night with Violet and caring for her older brother Luke, 5, who couldn’t go to school as the sibling of someone who tested positive for COVID-19.

Then we started all over again in March when Violet contracted human metapneumovirus and spent a week at Capital Health in Hopewell, New Jersey.

Violet’s year 2022 also brought joys.

In the spring, he was asked to be one of six ambassadors for Easterseals of southeastern Pennsylvania at its annual “Walk With Me” fundraiser at Montgomery County’s Elmwood Park Zoo, an initiative that involved a Violet Team fundraising challenge and a video of our family talking about Violet and the role Easterseals played in her development.

2-year-old Violet Anastasi was asked to be one of the six

Emily took the reins of fundraising. She had “Team Violet” t-shirts and pins designed and ordered, and went out of her way to support an organization that has done so much to support us. And, on the day of the walk, we were surrounded by friends and family who bathed the zoo in a sea of ​​purple.

Over the summer, we debated whether to change the setting of Violet’s daycare for the upcoming school year. Rather than keeping her with a provider who cares for children outside her home, we considered sending her to a preschool with classrooms for toddlers. While most of the centers we visited were very accommodating to the fact that Violet was not walking at the time, placement in our preferred class at our first choice school depended on the provision of one-on-one support through Violet’s school day with her.

Luke, 5, and Violet, 2, pose for a photo at Washington Crossing Historic Park in Bucks County.

We called a dozen understaffed and underfunded agencies, but couldn’t even get an interview with a potential assistant. So we pushed the school to make reasonable accommodations to allow Violet to be included in the class she would have been assigned to had she walked. After many email exchanges, a few virtual conferences and two in-person visits to the school, we decided to leave Violet where she was, in a setting where she is loved, challenged and fully integrated into everyday activities. without any conditions.

It is as it should be. And it’s not just Violet’s dad saying that. The Federal Departments of Education and Health and Human Services issued a 2015 policy statement promoting inclusion and defining it as “including children with disabilities in early childhood programs, along with their non-disabled peers ; have high expectations and intentionally promote participation in all learning and social programs”. activities; facilitate individualized accommodations; and using evidence-based services and supports to foster development (cognitive, linguistic, communicational, physical, behavioral and socio-emotional), friendships with peers and a sense of belonging.

We understand that advocating for Violet’s needs is something we will do for a long time and we need to be able to do it well. On this point, we received invaluable help from Violet’s incredible team of therapists, her service coordinator at Bucks County Early Intervention, and others who helped develop the IFSP (Individualized Family Service Plan ) of Purple. We also appreciated the excellent information and guidance from the Office of Early Intervention Services and Family Supports of the state Office of Child Development and Early Learning.

Violet Anastasi, 2, waits for her Tiny Tots dance class to start at Dance Action in Bucks County.  Violet has Trisomy-21, an extra copy of the 21st chromosome.  This extra piece of genetic material causes the characteristics associated with Down syndrome.

Advocacy is not easy, especially for introverted and conniving personalities like mine. But our daughter’s joyful life, her boundless love and her radiant smile motivate us to do our best. Her determination, her resilience and her forceful rejection of the limits imposed on her inspire us to try even harder.

Every day we thank her for that. In October, we celebrate him to bring awareness to his brothers and sisters with Down syndrome nationwide and to honor the journeys we as parents can take with them.

John Anastasi is director of Viewpoint and columnist for USA Today Network, Pennsylvania. He can be contacted at [email protected]

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