As we all cope with uncertainty due to the spread of COVID-19, children with autism spectrum disorder (ASD) may have an even harder time with these stressors.
Children with autism may struggle with understanding information they see and hear about COVID-19. They may also have a hard time communicating their concerns or asking questions, especially if they’re stressed or confused. Because it can be difficult for them to understand and convey their emotions, they may become easily frustrated. Additionally, as many parents of children with autism know, changes to schedule and routines often trigger anxiety and disruptive behaviors.
Meghan Wooldridge’s first-person essay below was originally published by PublicSource. Speak Now for Kids republished her essay with Meghan’s and PublicSource’s permission.
By necessity, I have to pay very close attention to what is going on in the world of infectious disease as the parent of a medically complex child. In the weeks leading up to COVID-19 reaching pandemic status, I began to circle the wagons, knowing that despite whatever measures were taken, we were going to have to go back into isolation.
My 3-year-old, Timmy, was born with a congenital heart defect, and he is part of the at-risk population should he contract the virus. When the media says that this virus is deadly to those with underlying health conditions, you breathe a sigh of relief because that is not you or your children. It is my child.
Kelsie is a Certified Child Life Specialist in the radiology department at Michigan Medicine C.S. Mott Children’s Hospital. Over the past 18 months, Kelsie and her colleagues have developed a program to reduce the use of sedation for pediatric patients who require an MRI.
The creation of the MR-I Can Do It program has offered alternative, safe options for children who do not medically require sedation. Sedation is often utilized so the child can remain still for the duration of the scan. But sedation comes with inherent risks for patients. That’s why Kelsie and her team have created opportunities for education and preparation to help kids complete MRIs without sedation.
When a child is scheduled for an MRI with sedation, Kelsie and the MR-I Can Do It team review the patient’s information to see if he or she is an appropriate candidate for the program. If so, the team contacts the family to further assess if the child may be able to complete the scan without sedation. Through developmentally specific teaching and preparation—and the support of child life specialists— over 600 children at Mott have completed their scans in the last year and a half without sedation.
When Henry laughs it is a full-body, head-to-toe roar that can fill a room. His laughter is something that the dialysis nurses at Riley Hospital for Children have come to love. It’s a laughter that is easily brought out and one that brings smiles to everyone around him.
His sense of humor and spirit are inspiring for anyone, but they are even more impressive considering what he has been through in his short life. Born with end-stage renal disease, he’s had 35 surgeries by the time he was 3 1/2 years old. The renal disease also meant undergoing dialysis four hours a day, four days a week. More importantly, he needed a new kidney.
Sarah Keyes knew she wanted a career working with children in the medical setting, so when she learned about child life degrees she knew it was the perfect path for her.
“I absolutely love being able to provide care to pediatric patients and families knowing that I can make a scary or unexpected visit to the hospital a little bit better for them,” Sarah says.
Sarah’s current role in the pediatric emergency department at UW Health’s American Family Children’s Hospital is unique among child life specialists. It’s a fast-paced environment where she sees many children during her shift and works with a diverse population of patients.
Sarah notes that only a handful of hospitals in the United States have child life specialists in their emergency departments. She helped start the 24/7 program that provides child life services overnight not only to the emergency department, but also all inpatient units and operating rooms. “Many scary events and new admissions occur overnight, and to be able to be there for our patients and families during some of the most vulnerable hours is truly amazing,” she adds.
While Sarah works with patients of all ages, her two favorite age groups are preschoolers and adolescents. She says watching preschoolers use their imagination while they engage in fantasy play and explore the world around them is beyond fascinating and fun to watch!
His smile lights up the waiting room when he sees her. He can hold his head up just long enough from where he is sitting in his wheelchair to look at her for a few moments before the muscles in his neck get too fatigued. She matches his smile with hers, greeting him with her positive energy and gently touching his arm to cue him that the play session is about to begin.
Five-year old Robby Barkoo is a patient of Beth Ryan’s, Senior Child Life Specialist at Ann & Robert H. Lurie Children’s Hospital of Chicago and leader of the Lekotek program—a therapeutic, play-based initiative that supports the development of children with special needs.
“Beth has a special spark that can light up an entire room! As soon as you meet her, you can see how passionate she is about her job and how much she cares about the patients and families she works with. We are extremely grateful for being part of the Lekotek program and having the opportunity to work with Beth,” says Jackie Barkoo, Robby’s mother.
Sharon Wurster loves reading to children at Johns Hopkins All Children’s Hospital. “I love it when I can cheer up a child and make their day better,” says Wurster, who volunteers at the hospital once a week during the school year and twice a week in the summer. She prides herself on being able to “read the room,” and with a grin, she pulls Alexander and the Terrible, Horrible, No Good, Very Bad Day from her cart.
“I have a special place in my heart for sick kids away from home,” Wuster says. “Having a bad day is the very thing I try to prevent for the children I visit.”
“When Sharon began reading, I quickly became invisible to the little boy,” says photographer Allyn DiVito. “She immediately transported Cole out of the hospital and into the story. Their eyes locked and it was magical. This photo was taken halfway through the book, but by that time, Sharon had me hooked too, and I had stay and hear the end.”
Charlie is a 4-year-old boy filled with endless amounts of energy, laughter and famous one-liners. He likes to tell stories in the most dramatic manner possible, while flashing a smile that can melt your heart. But under his upbeat personality, he holds a long list of diagnoses and requires eight specialists to care for his health conditions.
At two months old, Charlie was diagnosed with two congenital heart conditions—mitral stenosis and mitral regurgitation—as well as pulmonary hypertension, a type of high blood pressure that affects the arteries to the lungs and the right side of the heart. Within four months, Charlie had three unscheduled open-heart surgeries at Children’s Minnesota to repair, replace and fix his mitral valve. The surgeries he received at Children’s Minnesota saved his life.
Charlie’s stays at Children’s Minnesota didn’t end after that—he has had frequent ongoing hospitalizations. Charlie now receives weekly Hizentra infusions to get stronger and fight back against his illnesses. Even during the most painful procedures, he likes to high-five his stepdad and brag in his most serious face, “I didn’t even cry!” Charlie is currently waiting for his 4th ear surgery in March.
In recognition of American Heart Month, members from the Speak Now for Kids community will share their personal experience of raising a child with a congenital heart defect (CHD). Today, we will hear from Barrett’s dad, Nolan, about Barrett's health journey and how this heart warrior is doing today.
When my wife gave birth to my son, Barrett, we had no idea that anything was out of the ordinary. Her pregnancy had been fairly typical with two normal ultrasounds. She was a strong and healthy 25-year-old woman, and we had no reason to suspect anything was wrong. The long and exhaustive labor started with a two-hour car ride to a Duluth hospital from the North Shore of Minnesota. My son, Barrett, finally arrived after an emergency cesarean — just hours after his due date. He was perfect and we were so excited. We spent that entire day with a newborn that behaved exactly like newborns do: eating like a champ, getting his first bath from the nurses, meeting new friends and family, and filling his diapers.
About 120,000 babies are affected by birth defects each year in the United States. Not only can birth defects lead to lifelong challenges and disabilities, they are also the most common cause of death in infants and the second most common cause of death in children aged 1 to 4 years.
For National Birth Defects Prevention Month, Speak Now for Kids spoke with Carter’s parents, Webb and Courtney, to learn what it’s like to parent a child with a birth defect and how the condition affects her family’s life.
Carter was born with spina bifida. Although spina bifida impacts his life every day, Carter does not let it define who he is. This happy and energetic boy loves school, competitive cooking, playing adaptive sports and, best of all, being a big brother to little brother, Cohen.