Over the years I have given a lot of my time and brain power (as diminished as it might be on many occasions) to this question:
When faced with a situation in the community where my child has been struggling or done something to bring attention to himself – do I TELL that person or persons about his complex needs?
Which then inevitably lead to more questions:
If yes, then how much or how little do I say?
Do I give the correct DSM label? or just give layman’s terms and references?
Am I violating my child’s right to privacy by telling?
Will the person honour what I have told them or use it in some way against my child and/or me?
WHY should I even care what other people think about my child?
Am I wanting to tell them to alleviate my own feelings about this event (embarrassment, anger, frustration) or am I truly doing it to assist my child in some way?
Even if I am doing it because the person has pissed me off and I want to wipe that know it all smirk off their face then isn’t that ok sometimes? Aren’t I entitled to be less than perfect?
And on and on and on.
You get the picture.
There have been many times I have shared with individuals and groups (some more successful than others) and times where I have chosen to remain somewhat silent. In the end there is no clear cut rule or answer, at least not for my family. There are times where explaining to other people will undoubtedly help my son and/or our family. There are times where it is clear that all the explanations in the world will not change the other persons or groups assumptions about my son.
The biggest thing that I have mulled over the years is this: In so many ways we should not have to divulge private information about our son or our family just to gain understanding, compassion and acceptance from the community. In an ideal world people would not be quick to judge and condemn. People wouldn’t assume that a child “acting out” is the same as a child “being bad” or that the parents are doing a bad job. In an ideal world we would all be happy to accept and acknowledge that everyone is doing the best they can do. That people would be willing to cut fellow parents some slack and to not condemn each other.
The world is not ideal.
However, I must say that, in almost EVERY instance where we have chosen to share some of our son’s story we have made a difference. A difference to him, to our family, to the individual or group that we shared with and many times we have either witnessed or been told about how this new understanding of our son and one or more of his disorders has now lead to increased understanding/awareness in our community beyond our son. It is like its own “pay it forward” scenario.
I often tell service providers involved with our son that I hold near and dear to my heart the philosophy that compassion is key and knowledge is power. Building awareness leads to increased understanding and, in some instances, to change for the better for more than just my son. It sometimes means making us somewhat vulnerable and it means choosing to believe that there is inherent good in humankind. I am always asking people involved with my son to extend to him the courtesy of understanding that he is doing the best he can. What kind of hypocrite would I be if I didn’t follow that same practice?
I choose to believe that people are doing the best that they can and if I take the time to share and explain that they will then use that information, even in the smallest of ways, to do even better the next time.