Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.


Monday, November 13, 2006

Tender Confidence

Tender confidence is a newly acquired self-confidence. It is a confidence whose length of stay and strength is largely determined by the flux of events, and whether they support this new confidence or whether the events and occurrences of daily life sabotage the roots of this confidence.

Every confidence my son has is a tender confidence. His is a new confidence that is entirely reliant on others, entirely reliant on how his day is structured and molded to fit his needs. His confidence is sensitive to his reality and whether that reality is overwhelming, underwhelming, or dually calming and intriguing.

My son experiences the world differently than anyone I know, which makes his confidences very hard to build up. A plane flying overhead to me is perhaps a buzz in my ear and a sight far away. A plane flying overhead to my son is a wingspan that fills his mind, an intense vibrating noise that fills his ears, and a call to attention that supercedes EVERYTHING ELSE. A large spacious room with plenty of light is perhaps uplifting to me. A large, spacious, and bright room to my son evaporates any layer of security and comfort that had previously blanketed him. This room makes his fingertips tingle, his mind race, and his body sway and spin to accommodate all of this space. My son experiences the world so differently, and he deserves every right to succeed in this world, even if he feels, sees, hears, and understands everything a little bit differently and more intensely than the basic breed of human.

Sandis understands that he is different, he knows and he TRIES to not be different. But he just can’t stop, and why should he? If someone made you try and STOP being the very things that make you YOU, would you struggle with this? Would you even want to try? Sandis’s confidences are built on the tenuous relationship he has with how to experience the world in a socially appropriate manner.

I watched my son begin school overflowing with this tender confidence of his. I watched his eyes brim with excitement of what was to come. And in just over two short months, I have watched his hopes be dashed. I have watched his school deny him an IEP process until I receive an official medical diagnosis. I have watched, in this month and a half since beginning his evaluations at the U of M, as my son has lost each and every friend he had managed to garner. I have watched him come home in tears because what few accommodations that HAVE been made for him outside of an IEP were ignored because they were not communicated to a substitute teacher. I have watched his behavior become so unmanageable at his gymnastic class that I was greeted with an ultimatum, get him an aide or he can’t come back.

In short, I have watched his school fail him. I have watched and I have failed, as well, because I could and should have done more, but really, I didn’t think it would get this bad just waiting an additional few weeks for that medical diagnosis. I guess I didn’t realize just how “tender” his confidence was. Now I and his school, we have to play catch up. We should have made appropriate changes IMMEDIATELY, not waited for more problems to come up. As soon as we found out Sandis was on the spectrum, we should have started specific interventions tailored to this diagnosis. It all made sense to wait then, but now it doesn’t make any sense at all.

My son doesn’t come by his confidences all too often or all that easily. He is quiet about what is hurting him, and he is loud about what he loves. You know that he is hurting much more when he is even quiet about what he loves. I let myself down when I let him down. I won’t let that happen again.


Minnesota Nice said...

Sarah, those were brilliant observations. Sandis (and Gracie) are very, very lucky to have a mom with such sensitivity and awareness.

Scott K. Johnson said...

Yes, very brilliant observations.

It is too often that we parents let life get the best of us with how busy our OWN lives feel.

For what it's worth, I think that you do a tremendous job of really putting the kidlings first. We all *should*, but you *do*.