Thursday, September 23, 2010


I haven’t posted in a while because I’ve been on a crusade. That’s what my husband calls it when I get up in arms defending our children—most often our son. I have fought some unlikely foes—a kindergarten teacher, the school social worker and now, a boy scout leader.

I realize these titles can be worn like a halo. These are the good guys. And since I’m the one fighting them, then it follows that I must be the one in devilish red or black, the bad guy.

If it were only so simple. Because of course, I fell for the sanctity of these well-known images too. I signed up for boy scouts trusting that if anywhere, here was a community that could appreciate my little guy. It is very unlikely he’ll ever become an athlete. He won’t have an opportunity to win sports awards and trophies. I turned to the scouts to give him not only a community to belong to, but also a forum that will recognize and award his achievements. I wanted the Boy Scouts and everyone involved in the local organization to be, not just good, but everything it professes to be, every last one of them.

But, I’ve experienced parent-run organizations such as this before. They are as suspect to social pressures as anything else. And though determined to make positive changes for my son this year and despite my efforts, I could not protect him from falling victim to what appeared to be a combination of social jockeying, misguided leadership, persistent inconsideration and then, what got me really riled, an outright snub directed at two members of our den including my son. And so, my latest crusade ensued.

It is almost over now. The fire has faded to embers. At this point I believe that a misstep like this will not happen again, that these leaders will be more aware of the need to manage transitions and of the care required when publicly recognizing the boys’ achievements. I confronted a small but preventable injustice and achieved a perhaps minor social change however it is one I am certain will grow to benefit not only C.S., but also others. Unfortunately, I also know that by fighting, I have made enemies.

It seems, for every social gain I achieve for my children, I threaten to lose just as much in the same arena.

It is hard. It is very hard on me. Just as I wish for my children to have friends and feel like they fit in, so would I like the same for me. I can imagine this would be so much easier if I’d just play nice and get along, especially with the “good guys,” the right people and others with social influence. “If you were smart, you’d just drop it,” is something I’ve heard before.

But, I’m just not like that. He was innocent, is innocent. And no matter who you are or how much social influence you can yield, if you intentionally hurt my child, I will throw every sharply articulated word at you I feel is appropriate and hit my target as squarely as I am able in his defense. Which is what I did.

I’ve been snubbed since. Of course I notice. I spend every day helping my son realize the importance of making eye contact, teaching him to take the perspective of others, helping him perceive the many unspoken messages involved in our language such as facial expressions and other subtle clues that signify when contact is acceptable and when it isn’t. How ironic, that similar deficits are intentionally employed to snub him…me…us.

Of course, I’d like to think people are self-reflective. That once the immediate defenses are down, whatever the situation, in the end it will resolve into some sort of greater understanding and all of this will be somehow worth it. But I don't think that will happen.

Expecting reflection of others, I have reviewed my own role in this quite a bit. Did I get too angry? Do I fight too often? Should I have just played nice and let it go? I’ve concluded:

It is important to confront a bully. Until recently, I’d never faced bullying before. I’ve been aware of cliques, easily avoided them and had not become a target until my forties. But now, as a grown woman with young children, I seem to have found a source of plenty. Perhaps it is because I cannot convey the economic status or social support afforded me through grade school. Perhaps it is because this area is so densely populated—although outside “the city,” we are far from the peaceful countryside. But much of it seemed to begin when C.S. entered a mainstream school.

C.S. received so little social support at school that he was the target of relentless group bullying last year. He dreaded going to school. He cried and was so distressed he said, "I just wish I were dead." That's when my whole approach changed significantly. I quit my job. I began the process to have him reinstated to receive services at school. And I became as involved as possible at his school and in his activities. I was determined to defend my son.

So there I was standing ready and defend him I did. So now, I am feeling unfairly slighted by this woman's friends, but at least I'm not as vulnerable as C.S. was last year. I continue to remind myself, this is uncomfortable and unfortunate, but this I can face.

Here’s when I pray to my grandparents for support. After their death, I found a letter from the most reputable teaching hospital in the state diagnosing their daughter’s condition. My aunt had Down’s syndrome (what was then described as Mongoloidism). The letter included a professional recommendation that they hand their child over to a family on a farm or in the country where she could grow up in peace because she would never thrive socially and that raising her themselves would have a negative impact on other members of the family. They did not take this recommendation.

That does not mean the doctors were wrong, that anyone was wrong. The doctors’ prediction was realized exactly. My aunt did not thrive socially. Precisely due to her condition and as predicted, her presence among them had a considerable, perhaps negative, impact on the entire family. My grandparents certainly faced slights large and small that shook their beliefs and the very foundations of their sense of community—the greatest of these was when their church asked that they no longer bring their daughter with them to service because she was too disruptive. As my aunt grew into her teens and then twenties, she became increasing isolated, shunning anyone but my grandmother and practically living in the basement. Sadly, my grandmother seemed to grow more socially withdrawn right alongside her.

But because my aunt thrived well into her twenties (at the time, unprecedented); because, although isolated, she lived with her family; I believe my grandparents were one of the many who helped break down social barriers for Down’s children and the families that followed.

High-functioning autism is not so easily recognized. Being harder to identify, it is perhaps unrealistic for me to expect my efforts to yield a similar increase in social acceptance and understanding for my child. If I were to exact a social change, which is something I desire, I have decided that I must focus on this: to deter the spread of intolerance, to encourage sensitivity and to defend a parent or child from being cruelly targeted for social ostracization simply because they are quirky, odd, outside the mainstream or otherwise different. I'd like people to be not only tolerant of but appreciative of differences.

And although we've had a rough beginning, I have thankfully received enough support that I now once again feel confident Boy Scouts will be the perfect place for both me and C.S. to achieve our goals. Here's looking forward to another exciting year.

My silver lining: I admire my son for his unique strengths and amazing abilities. I admire my daughter for her sensitivity, caring advocacy and tolerance. I admire my friends for their simple kindness backed by truly individual beliefs and integrity. And while my crusades may have distanced me from some socially, may have caused me to loose a potential friend or made the road ahead bumpier for me, it has brought me closer to those I treasure the most, including some that I thought I had lost. Although I still miss them dearly, I feel my grandparents’ presence more than ever. I am proud of their long-ago decision to keep their daughter despite social consequences so accurately predicted. Although the doctors were correct in their judgment, in the end, my grandparents’ decision was what was right. By example to me and to the greater community, they showed that there is something more valuable than protecting one’s social status—loving your child. And so, when I feel a little shunned I tell myself, now I can understand exactly what my children are facing. By joining them, they do not have to go it alone. I’m right there with them. And sincerely, I am certain, there is no place I’d rather be. It just feel right to me.

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