OXFORD • Fifteen-month old Grey McCauley can’t make a sentence yet, but he’s already been an ambassador for children with disabilities.
With a shock of blond hair and a big smile, the Oxford boy, along with his parents, Emily and Mark McCauley, went to Washington, D.C., this spring to advocate for early intervention services and expanded parental leave with Zero to 3, a national organization focused on early childhood development.
Because Grey suffered a brain injury due to oxygen deprivation at birth, parental leave and early intervention services are critically important for the McCauley family.
“Until we needed early intervention services, I didn’t realize how many kids need it,” McCauley said. “So many kids aren’t receiving services early enough; they could have better outcomes if they started (therapy) earlier.”
The brain grows faster in the first three years than at any other time in the human lifespan. If children with developmental delays don’t receive intensive therapy, they miss a critical window of development.
Grey, who is diagnosed with cerebral palsy, is very engaged, alert and social, but he is about four to five months behind in hitting developmental milestones. His mom credits the physical, occupational and speech therapy he has received for helping him not slip further behind.
His medical team thinks with the early intervention services, the effects of the cerebral palsy will be mild.
“Early intervention has given us a lot of hope,” Emily McCauley said. “We know he’ll have challenges, but hopefully they will be as minimal as possible.”
In addition to the challenges all new parents face, the McCauleys juggle 3 ½ hours a week of therapy and medical appointments and testing in and out of Oxford. Last spring, they went through a period where Grey was having 50 to 100 seizures a day before they were controlled with medication.
“It’s been exhausting,” Emily McCauley said.
The McCauleys count themselves lucky in many ways because they had support and flexibility to stay with Grey when he spent a week in neonatal intensive care in Tupelo and to get him to doctors and therapy appointments as he’s grown. Mark McCauley just finished his doctorate at the University of Mississippi. Emily McCauley has worked for the University Museum for eight years.
“We’re very fortunate with the university,” Emily McCauley said.
Some parents whose babies need NICU care for months have to go back to work because they have used all of their leave and can’t afford to miss any more time.
“Parental leave affects every family, but especially families with medical challenges,” McCauley said.
The McCauleys made the trip to advocate for families in similar situations. What can seem like small cuts in the programs at a national level can significantly affect access to early intervention services, Emily McCauley said.
“Politics are so divided on so many fronts; this should be a bipartisan issue,” McCauley said. “Whether it’s Mississippi or Maine, states are going to have children who need services.”
During the trip, they met with Senators Cindy Hyde-Smith and Roger Wicker and Rep. Trent Kelly and talked to their staff members. They met Hyde-Smith on the steps of the Capitol and Grey shared a cuddle with Hyde-Smith, who teared up when she heard about the family’s challenges.
“It was a really powerful moment,” Emily McCauley said.