Family, Parent Resources, Uncategorized

Including the Visible and Invisible

This week I tweeted Maureen Wallace’s article and received a big response.

It spoke to a common parent concern:

That their child will be misjudged because of their diagnosis.

In 2008, my colleagues and I spoke the topic of visible vs invisible disorders and behavior management at the Society of Developmental and Behavioral Pediatrics Annual Conference. The situation Wallace highlights in her article could have easily been an illustration in our presentation. The instructors at the gymnastics studio were responding with bias to the way her son looks, not his ability.

Some diagnoses, like Down syndrome, come with visual signs or symptoms. These are things the general public may pick up on by looking at a person. Other diagnoses, like autism, dyslexia, or Tourette syndrome (TS), can’t be seen on a person’s face. My oldest son* has TS. Like the women in Wallace’s story, a few have responded to him based on their misconception of the diagnosis.

When we perceive our child has been slighted a wave of emotion pours over us – anger, sadness, righteous indignation. The Mama Bear in us rises up to protect, intimidate, and if necessary attack. Instead, these feelings should give us reason to pause. This is why I appreciate Wallace’s approach. Without aggressively pointing out personal ignorance, she tries to show how well her son fits in with the group. Sometimes people remain blind to their own prejudice and for the well-being of her children, Wallace removed them from the program. Thankfully, this isn’t always the result.

Several years ago my son started on a new soccer team and his tics were flaring up. I approached the coach on the first OLYMPUS DIGITAL CAMERAnight of practice to let him know about the diagnosis of TS and what he might see during practice and games. The coach’s first question was, “Is he going to bother the other players?”

Like many other parents before me I wanted to react. Instead, I kept calm and smiled. I offered to speak with the team and other parents if his tics became disruptive. I assured him that my son loved soccer and would be doing his best to focus on the game. Believe me, my husband and friends got an earful.

While I thought some very negative things about the coach’s initial response, my son had a great year. I hope the experience paved the way for others in the league.

As a community we need to decide:

If our goals are acceptance and inclusive communities, what are effective ways of dealing with misconception?

Have you successfully engaged others about your child’s diagnosis? If so, please share!

*My son’s name is omitted or changed on the blog for privacy.

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