Susan's Blog

Sunday, April 29, 2012

A Sense of Happy Purpose

Driving away from Nat’s house today, I was unaware that I was happy. It only occurred to me later in Home Depot (getting mulch with Ned) that I didn’t feel the way I have sometimes felt in the past after dropping Nat off. The bad feeling is a little bit of the emptied-stomach grip you get with fear. Empty stomach, cry in the back of the throat, smile pasted on because I’m trying. I didn’t feel any of that today.

All day I’ve been trying to figure out why. Certainly this is not the first time I felt happy there. The house itself is a happy space. I don’t know why. I didn’t buy it; the other mom did. I helped decorate it, but this is more than bold-colored furniture. It isn’t even the style of house I like and there’s some ugly fake wood on the inside of the front door. Clearly this is not about looks.

Whatever light there is streams into the front of the house.  It’s like a sunshine sponge, airy and light, sweet and full. Along the southern wall is a typical suburban living room picture window. The floors are bare, new oak that also reflect light, and the walls are a creamy yellow so everything is airy gold. Somehow it seems like every time I’m there the sun is out.

But I don’t always feel happy there, nevertheless. Sometimes there is an unsettled feeling, like no one knows quite what to do. One roommate walks around slowly and looks puzzled a lot. He asks the same questions frequently. He asks me which kind of hug he can give me (it’s always the same: a friend hug, which is side-by-side, arm across the shoulder.) The other roommate bounces here and there, ricocheting off the walls. Nat does his fast walking from his room into the living room and back, and his eyes look too big.  The caregiver stands in the middle of it all, calmly talking to us (Ned and I nearly always go together, which helps).  But maybe it felt like too many planets orbiting, and anyone who reads my blog knows that I hate orbit. It is too lonely.

Today the caregiver had a plan that really sounded like a plan. Kite-flying day in a nearby park, with an autism group. So, a non-judgmental outdoor activity with a lot of people.  A radiant day, and Nat looking very purposeful, very ready for us to leave.  When Nat wants people to leave, it doesn’t mean he doesn’t want to be with you. It means that the next thing that happens is on deck and that didn’t include you so you should no longer be there so that the next thing happens the way it is supposed to happen. For so much of Nat’s life, perhaps his greatest happiness is to know what comes next and then for it to happen so that the next thing can happen, too. I used to draw up calendars for him, perhaps 6 weeks at a time (whatever would fit on a piece of paper), and most of the calendar would say: “school, school, school, school, school. No school, no school.” And then the next week would be the same, with occasional appointments and events interrupting the flow. This is how Nat developed an understanding of time, of how weeks work.  I used to sit down with him, whenever I’d made a new calendar, and read it out loud to him. More than once. Then the calendar would end and I would wonder if he could just go on and on, to the end of time and remind me: “After life, death!”

I wanted to leave, and get onto my next thing. And I felt like Nat did, too. That may have been it: we both had plans.  No, not really plans. Just Sunday sunshine stuff to do.  I wanted to leave, and get onto the next thing.  And all my stomach felt was hunger, real hunger (I’d just had a 14.7 mile bike ride) — no sad fear.  I felt scrubbed out like a big white bowl, fresh from the dishwasher. I was thinking vaguely that after this Ned and I would find a place with sandwiches and just eat them outside somewhere.

So maybe this warm sense of regularity was baking in the bright living room air, like almost-ready cookies, giving us all a sense of anticipation for what’s next, even if it meant that we were not going to enjoy it together.  Not like lonely planets in orbit, but like bright white stars forming constellations.


I wait for this day! I am happy for you.

— added by Corie on Sunday, April 29, 2012 at 9:27 pm

I’m trying to understand how group living is financed. Is it one parent buys a house and the roommates pay rent? How does this work?

— added by Sarah on Monday, April 30, 2012 at 8:43 am

So encouraging to read!

— added by Alice on Monday, April 30, 2012 at 1:00 pm

In our case, currently the house is under the Shared Living program through Medicaid. The owner of the home is using a service provider to run things. The Service provider works with the state to find appropriate roommates, the roomates’ funding goes to the service provider to pay for staff. The families use SSI to pay for rent and food.

— added by Susan Senator on Monday, April 30, 2012 at 5:18 pm

Also the rent is determined by the State and our sons, SSI. We don’t supplement; the service provider and the staff I must budget accordingly.

— added by Susan Senator on Monday, April 30, 2012 at 5:20 pm

Not like lonely planets in orbit…..I like this. IT is something to remember and chew on. In my own therapy I am uncovering how I am inclined I am to want to be very close with those I love. I do not want to ay emeshed, but it can lead to being emeshed. I guess I do not want to say emeshed because I think I have learned the danger of being emeshed. Yet, I still feel this strong need and I do not understand it fully. What I am hearing about separateness between two people, people that love each other, sounds very strange yet to me. I think about it and I feel as though I would feel unloved and alone. I have to learn it though, for my wellbeing and specifically for that of my son. He will never choose to walk away from me and live his own life. He is not able to do so. My daughters are and will. They have learned some tendencies to not do so, but as I do my own work, I role model how to separate to them. Separating from my son will probably be harder. Also, in another post, than you for saying how the parents that think of their disabled child’s death falling in time with their own is not having hope while having hope is hard work. I am a worker, Susan. Show me the work, specifically show me how others think it unimportant or that I cannot do it and somehow it feeds me to do it – one day at a time. Complacency and not seeing the work – that is the not good thing.

— added by Stephanie on Tuesday, May 1, 2012 at 10:31 am

Susan, Nat just sounds so happy, which at the end of the day is what I want for both of my boys, whatever type of “life path” they lead. You seem happy too- well deserved!

— added by kim mccafferty on Tuesday, May 1, 2012 at 2:28 pm

Hi Susan,

Thank you for the financial info. My son will be 15 on Friday. So I am looking ahead. The $ determine so much of what will happen. This is so helpful.

— added by Sarah on Wednesday, May 2, 2012 at 7:54 am