Jillian Benfield, a mom from Arizona and author of the free e-book 5 Spiritual Comforts for Special Needs Parents, has an important message about parents of children with special needs: "We are always trying." That was the theme of a moving post Benfield shared on her Facebook page earlier this month, and it has since gotten a lot of love.
Benfield addressed the open letter to "those who see, know, or love a special needs family."
She recalled, "A friend of mine messaged me recently about the extreme behaviors her child with an intellectual disability was displaying. Something, I’m familiar with. But she followed it up with saying, 'My family thinks I don't discipline him enough. They don't get it.' She's right. They don't. They can't."
"So, let me help you try to understand our families just a little bit better," Benfield continues.
"The behaviors are something many of us parents are constantly managing," she noted. "We've gone to classes, we've read books, we've tried strategies, stopped those strategies, and started them again, stopped again, found a new method and…repeat."
"Our kid's behaviors also come in waves," notes Benfield.
"My son went into a downward trend after Christmas that lasted through February," she shared. "Then, one day it stopped. Nothing we did, to my knowledge, brought him out of it. We managed symptoms, but did not provide a cure. For now, this is part of his life. And we are trying. My friend is trying. We are all trying."
Benfield explains that "sometimes, trying looks like taking a more hands-off approach, and sometimes, it's more hands-on."
"Sometimes it looks similar to how we parent our typically developing children, and sometimes it looks starkly different," she noted. "We understand our kid's communication issues are frustrating to them. They respond in ways that don't make sense to the outside world, or even to us. But they are trying too."
She concluded, "We are parenting disabled children in a world that is not accommodating to them. We are trying to figure out how to best accommodate them. Sometimes, they are exhausted. We often are, too. We want the world to have high expectations of our kids, while also realizing that they need more support and grace in the process. We try to remember these things ourselves. And it is a constant balancing act. We know you can’t know our lives. But know this: we are always trying."
Benfield tells CafeMom that although the conversation with her friend inspired the post, she has also "felt self-conscious."
Strangers or people in big group settings, such as birthday parties, have stared at the Arizona mom and her son, Anderson, she says. "Anderson struggles with impulse control, and it's very hard to manage, and we are constantly changing strategies," she shares.
Ultimately, she wants other parents to know that the life she and other parents of special needs kids have is "a bit different."
"Sometimes that different is wonderful, like the high we get when our child has accomplished something we may have taken for granted before," Benfield notes. "But sometimes that different is hard and difficult to explain to outsiders. We need them to partner with us and simply say, 'I'm here for you.'"
