January 3, 2013 | 11:52 pm
Posted by Michelle K. Wolf
“Denial is the refusal to acknowledge the existence or severity of unpleasant external realities or internal thoughts and feelings.”
--Encyclopedia of Mental Disorders
"Denial ain't just a river in Egypt"--Mark Twain
For parents of children with special needs, denial can be a useful coping mechanism, at least initially. When we first observed that our son wasn’t achieving typical milestones as an infant such as crawling or holding an object with two hands, we chalked it up to his contracting chicken pox, or for being more interested in observing than moving around. Especially when he was so young, couldn’t he grow out of it? Many of the professionals we consulted with agreed with us—it was too early to jump to any conclusions but an Early Intervention program was still warranted.
As our son grew older, it became clear that he was significantly developmentally disabled, both physically and intellectually, and whatever denial we were still holding onto, like the edge of a pool before a jump, came to an end. Once swimming in the deep end of the pool, to continue the metaphor, we encountered a whole new world that we never knew existed. Inside jokes, a new vocabulary, and frankly a whole different outlook that was more open, certainly quirkier, and less judgmental than the “typical” world.
In some ways, having a child with physical disability is easier than with other, more “invisible” disabilities because it is so obvious. In helping to create HaMercaz, the one-stop program for Jewish families raising a child/teen with special needs in Los Angeles, I met a few mothers who would warmly greet me at a family event and then whisper in my ear: “Please don’t use the word ‘special needs’ around my son. He doesn’t even know that he has a diagnosis.” More than one religious school principal has commented that parents often fail to disclose that their child has a learning disability, until the teacher calls up about a behavior or school work problem.
This issue of trying to “pass” is made worse when there’s deep stigma and fear of isolation. For most well educated parents, having to accept that your child isn’t going to graduate with a diploma from a high school, let alone college, is almost impossible to accept. And so some kids are placed in classes or schools that aren’t a good match for them, where they can’t access the services they really need. Sometimes, over-achieving families want all their children to participate in the same high-level academic program, even if their younger child with special needs lacks the capacity to keep up. The social situation can be even tougher, since most typical kids have learned along the way to be kind (or at least to ignore) those with disabilities but will still bully and ostracize those who are “weird”.
As a community, we can help parents and other family members pass through the denial stage by gently showing that we care, and are non-judgmental in our approach. Support, friendship and small acts of kindness can help make the journey that much easier for everyone.
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