Susan's Blog

Friday, December 7, 2007

Leges Sine Moribus

A Day that will live in Infamy.

I have to say I am grateful that, no matter what I’m going through here, we are not fighting a war like World War II, the nastiest of nasties. From the gas chambers to the sneak attack on Pearl Harbor to Stalin to Hiroshima, that was one horrible, horrible war.

So I have some perspective. Although as I often say, we all have a right to our own particular wars — my great Grandma Sarel said, “Our own sack of troubles” — and sometimes it feels like my own little war here. Not on a level of WWII, Nam, or Iraq, but still, enough to make me wonder about the point of things. Yesterday I approached that dark question for a few moments, then turned away from it. Instead of trying to answer that one, though, I got in touch with a few lifelines (NS, EP, BB, RK) and stood my ground.

My war is not with autism, it is with the way this country, this world, leaves so many gaps between law, institution, and the families. I was told yesterday that I could “just go down to the probate court (about 40 minutes drive from here) and pick up the right forms, and make an appointment with someone there, and talk to them about what else we need to do, and then just do it, and then wait for our court date, while they run a background check on Ned and me to be sure that we are fit enough to be his guardians.”

Strange that the state of Massachusetts did not care this much about our fitness as parents when Nat was a completely vulnerable little boy. And once the state does ascertain our degree of competence, you can be sure they will not care about what happens to him. Certainly they will not be able to provide the help Nat needs to get by in this world. I am reminded of Penn’s slogan: Leges Sine Moribus Vanae. Laws without morals are in vain. We proved this much in World War II. We kicked the crap out of fascist rule. Now it’s time to enforce our disability laws with a real belief system. And money.


Wow, Susan, I am not sure how to start. I am not in your country, not in your spectrum, not in your league, ..but am grateful for your honesty, your passion and your light.
I am sorry – anything I write here will probably (hmm…already does..) sound stupid.

You are fighting your own little war, and it is more important than Iraq, or any other place away from your heart. To a certain extent the anger and frustration is good. It feeds. It gives energy. From what you write you are stable enough to see both sides of the coin and slant towards the positive in most everything.

People with passion and feeling see both sides. Once you have seen both sides, you can see beauty in what others have yet to. When that happens there is no going back. That is why an old man in a nursing home is looked at differently by his visiting granddaughter than anyone else. Not something that can be turned on and off, this is a beautiful and painful way to go through life. Every emotion is amped up a bit when you are so caring.

Your surroundings and your circumstances are nowhere near good at times but you are right to fight them. They are not perfect, nor approaching decent at times, but they are getting better because of you. Not because of “people like you”, but you. What is close to you is worth the fight.

You are a wonderful example to others and to your family. Sometimes those at war must rest. Leave a light on for your family, but recognize when you need to breathe deeply and close your eyes.

PS – I honestly hope I have not overstepped here, I cannot even pretend to understand what is in your life right now. I have just enjoyed your writings for a little while.

— added by Grant on Friday, December 7, 2007 at 10:13 am

Glad you finally got the information you needed and it seems like the process should be fairly straightforward. It is simply astonishing how our particular legal culture, divided as it is into county, state and national principalities, is so confusing to navigate.

How I have always longed for an assigned representative or easily accessible central clearing house of information, forms etc. I guess in PA our local MH/MR case manager is supposed to be that but: NOT! Big-time not.

It is all a mystery.

— added by Nancy Bea Miller on Friday, December 7, 2007 at 10:21 am

So true. Andy and I were talking the other night. We continue to pass law after law, but if they are not enforced or funded what is the point.

Having moved to MA from Texas, let me tell you sister that this is heaven compared to that disability wasteland. That’s what really breaks my heart. Provision of services is so uneven … not just state to state, but town to town. Every family dealing with a disability should receive equal and appropriate treatment.

How we get there … I wish I knew. 🙁

— added by Judith U. on Friday, December 7, 2007 at 11:09 am

thank you all for your thoughts here. grant, of course you did not overstep or sound “stupid.” i am touched by what you’ve said.

nancybea — well, you know exactly where i am now…

judith — talk to you soon, at Peet’s!

— added by Susan Senator on Friday, December 7, 2007 at 12:34 pm