Even with the various developments that have thankfully come about in the last decade that aim to aid in developing children with autism to their fullest potential, we tend to forget to ask about the parents holding the ground with the children, the home, the doctors, and everything else.
A heartrending letter penned by Carrie Cariello lets us in on the struggles we so often don’t get to hear about when it comes to taking care of children who are within the autism spectrum.
“Raising a child with autism is kind of like going for a boat ride in the wide, open water. One minute it’s all smooth sailing — the radio is playing softly, no one is screaming a profanity ― and all of a sudden you come to an abrupt stop, like the anchor has dropped,” she writes.
The situation with Cariello’s 13 year old son Jack, who has autism, seems to have come at a standstill though, she writes; not moving forward in their little boat on that wide ocean.
“We have not moved forward a single inch against the tide for quite a while. And this standing still might just be the hardest thing for me,” she says.
Jack’s autism causes him to have sensory processing disorder, where he is constantly making contact with objects in his surroundings in order to reassure himself. Of what, only Jack will ever know.
“I have been thinking about this boy and his future and his anxiety and his obsessive habits for 13 years. Not a single day has passed when my stomach hasn’t squeezed together because of it,” writes Cariello.
A parent constantly thinks about the future for a child with no known psycho-social or cognitive difficulties, amplify that, and you get the thoughts of a parent caring for a child with autism. Cariello, understandably, is growing frustrated and worried that Jack, for quite some time, has not been hitting the developmental checklists that doctors say are an indicator he is progressing.
“Things like swearing. Not touching all the food on his plate. Not touching all the food on my plate. Boundaries. Flexibility with the radio station in the car. Flexibility with what we watch on television. Flexibility in general,” she said.
Do you want to tell her to have hope? She’ll be the first to say she’s been dangling hope in front of her for years, always wanting it in plain view, in arm’s reach. She dreams for Jack too, even if might never come to understand.
“Dreams are fragile, especially when it comes to autism. They are like the colorful, luminous wings of a lovely butterfly. You have to handle them very carefully and respect their delicate nature. Otherwise, they lose their color, and they turn to dust.”
Read her entire piece here.