April is National Autism Awareness Month and an opportunity for the public to become more educated about autism and how it effects families as well as their communities.
Every parent and in home caregiver of an autistic child knows that the disorder brings daily challenges and triumphs as these children struggle to process the world around them on different sensory levels. Autism spectrum disorders (ASDs) are characterized by significant impairments in social interaction, communication, and unusual behaviors or interests.
“The daily challenge of raising a child with autism is understanding that the thinking and processing architecture in the child’s brain is different than yours,” explained Ellen Notbohm, an award-winning author of books about autism and mother of an autistic son.
In Notbohm’s book, “Ten Things Every Child with Autism Wishes You Knew,” she states: “Some days it seems the only predictable thing about it is the unpredictability.”
The symptoms and severity of autism differ from child to child so this means that the challenges of caring for children with autism may include feeding difficulties, communication struggles, aggressive behaviors, hyperactivity, heightened sensory awareness, and more. Often times this means that parents of autistic children are exhausted and need respite care for themselves.
Joy Smith, a mother of five, has an autistic son, Adrian. Smith has found that consistency is a key way to help Adrian, but it is challenging.
“I know that a stricter routine is better for him, but him being on a strict routine means that I also have to be on a strict routine -- and that is hard for me,” she said. Smith writes about the details of life with her autistic son on her blog, www.joysautismblog.com.
Joy shares the story of finding out that Adrian was autistic at 15 months old on her blog. Such early detection is key in getting a child with autism into therapy as soon as possible.
Notbohm encourages caregivers of children with autism to keep in mind how differently the child sees and experiences the world around him.
“Our way of experiencing the world is natural to us but it is foreign to him,” she said. “He experiences the sensory world differently, processes language differently and interprets social cues differently.” She says that parents and in home caregivers have to be willing enter the world of the autistic child.
Her advice: “Patience. Patience. Patience.” And to see autism as a “different ability, rather than a disability.”
The triumphs that Notbohm and her son have experienced have happened “in tiny increments, day by day, from the day he was a sensory-dysfunctional, barely verbal toddler.” Her son is now a high school graduate who can function quite well out in the world. “He handles money responsibly,” she said. “He travels everywhere by public transportation. He grocery shops, cooks for himself, mows lawns, cleans house. He voted in the last election.”
Perhaps it is knowing that these things are even possible for her own son someday, Smith said her daily triumphs are seeing progress in Adrian’s development. “Every sentence is an accomplishment,” she says. “It feels so good to see things click with him and come out of his world and come more into our world.”
Caregiving is about more than just one person fulfilling a list of a tasks; it’s about human relationships and connection.
Home care is not just one thing, but instead an umbrella term under which there are many types of care for many different types of needs and people. Learn about elder care, respite care, personal care, dementia care, and after-surgery care.
People who are living with developmental disabilities often need a professional caregiver in addition to family member support.