Raising a Grandchild with Autism

Cornelia and Curtis Jr. spend time at Cedar Creek Therapeutic Horseback riding this past summer in Columbia, Mo.
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Cornelia Hayes raised four boys into adulthood while working full time for 43 years – some stellar accomplishments and ones deserving of retiring to a life of relaxation and leisure. When you ask Cornelia if she has time to enjoy what retirement offers, she responds, “Very little! We don’t have many of those days.”

After retiring from a successful career at State Farm Insurance, she moved directly into her role as the primary caregiver for her 5-year-old grandson Curtis, Jr., who was diagnosed at a young age with Autism Spectrum Disorder and requires specialized care and supervision.

According to a report from PBS News Hour in 2016, 2.7 million grandparents nationwide are raising their grandchildren and that number has risen 7 percent since 2009. While Cornelia is the primary caregiver, Curtis Jr.’s father and uncle also live in the household and assist with meeting his needs whenever they can.

Curtis Jr.’s Support Coordinator at Boone County Family Resources, Mary Jacks, has worked with families like the Hayes for 23 years to link them to services and supports that specifically address the special needs of a child with a developmental disability.

“Curtis has gone from an overactive, often self-injurious toddler who did not speak, to a five year old who can verbalize his wants and needs. He is working towards total communication, and social reciprocation. He has grown in his love of music and singing and being able to tolerate things that he could not process early on,” said Mary about her interactions with Curtis Jr. over the last few years.

Cornelia advocates for Curtis Jr. in each program he is a part of. She makes sure he gets to his weekly therapies and recreation programs that she has helped arrange. She has great insight as a parent of grown children and grandparent to two others, and is not reluctant to ask questions to gain a greater understanding of Curtis’ disability related needs and resources. 

“I don’t want to say autism is a label, but you have to have a lot of patience … More than what we had to do with our own four boys. The hardest part right now is getting over that hump of knowing all that extra energy that you have to give for him to be able to feel comfortable,” said Cornelia when asked how she keeps up with meeting Curtis Jr.’s needs.

“We prepare things for him and do things for him, but that’s not enough. That’s why I’ve been going to classes trying to learn more about autism and what we can do to help him when crisis happens or even when something good happens.”   

Cornelia is happy to share her experiences with others, and hopes that by sharing her journey, she will encourage others to reach out and ask for the extra help.

“It’s the little things that we didn’t think nothing about. But by talking to people that has kids with autism, it helped me to understand it more. It even gave me hope … I’ve seen a kid graduate that had autism, a mother told me about her child going to the prom, another mother told me that her child was in 5th grade singing. The idea that knowing there is others out there, it made me feel comfortable with the situation of how our lifestyle changed, and [knowing] it’s going to get better,” said Cornelia.