1) If you must jaywalk, do not read your phone and go really slowly at the same time.
2) If someone clearly lets you in ahead of them, wave or smile at them.
3) If you did something wrong while driving and someone honks at you, don’t honk back at them.
4) Do not listen to your music so loudly that I can feel the beat and hear the lyrics — even though you have on earbuds.
5) If I hold the door for you, thank me.
6) Let people out before you go in. Elevator, restaurant, store.
7) If you’re riding a bike, don’t antagonize drivers by riding two abreast or taking the entire lane when there is a bike lane to use
8) When passing a biker in your car, don’t pass them too closely.
9) It’s okay to give a homeless person money. It doesn’t matter what they may or may not do with it.
10) Don’t count up every item on your restaurant check. You’ll enjoy your meal better the quicker you take care of paying.
11) Don’t let your child play or run around right in the way of waiters.
12) Don’t have a loud conversation with a friend on a quiet subway car.
13) Give up your seat for an elderly person, a pregnant person, an overburdened person.
I found myself almost going back in time today as I thought about Nat and reading. I want him to read more. I have wanted that for ages. Reading was in his IEP year after year. He knows how to read, has known since he was about 7 or 8. He has progressed to a first- or second-grade level, and there he has stayed. I don’t care, I don’t mind, who cares what grade he’s at as long as he’s reading. But I don’t think he is. I do hear from the house staff that Nat does choose to read when he has down time. I don’t really see that here, but I have to admit that we don’t often think of offering it to Nat as something to do. Usually, if I do see him looking at something on the living room coffee table, it is a flyer from his social group. He doesn’t seem all that interested in his childhood books — or the childhood videos, for that matter. When we do ask to read with him, he can read, probably at a first or second grade level. I believe he understands the content when written on that level as well.
When Nat was a baby, the first shared activity we had with him was reading. That day, that beautiful, heartstopping day, when he reached out for Corduroy’s Day: A Counting Book, took it from my hands, closed it, and handed it back to me, saying “uh uh uh,” and I knew that some things were going to be okay with this unusual baby of mine. There was something we did like to do together; there was something he could make me understand.
Back then Nat showed his joy in small slips of smiles here and there, unexpectedly wide bright flashes of light from his face. That’s what he does now. But I want more. I want to see him engaged like he used to be, in something that he likes, but that will also stretch him, lead him out of his own mind. As fascinating as he finds his own world, I think it would be good for him to engage more in the wider one out here. Aside from interacting directly with people, or indirectly on Facebook or email, there is one very clear way that Nat could enjoy engaging with the world: through books.
But as I once said prior to Thanksgiving of 1992, “There are no good books out there,” for someone like Nat. Back then I meant someone who needed things explained, step-by-step, beginning, middle, and end. He needed Thanksgiving to be explained, not in terms of Native Americans and gratitude, but in terms of what the heck happens to him on Thanksgiving Day. I created the “Nat Books,” or “Crisis Stories,” which did just that. These were a kind of social story, but I feel I invented them (mine, I mean), because I did this before Nat was even diagnosed, let alone before I’d even heard of Carol Gray’s ingenious invention. Necessity is the mother of invention? Necessity is why this mother invents.
This morning I was Googling books for adults that were written on a first-grade level. My mother is a librarian and she told me such books exist. I could only find one company producing them, and frankly they looked like cheesy boring crap. And suddenly I found myself saying, “Why can’t there be books about adult things, but that Nat could read and comprehend? Why must he be stuck in the world of princesses and pirates? Talking mice, flying carpets? He’s a grown man. He must wonder about other things. Why aren’t there books about things that Nat cares about, like — like — like — ?” Like what? What does Nat like?
Nat likes calendars, his social group outings, Cape Cod, and his brothers. He types “Max Ben” whenever you ask what he wants to talk about. He asks to talk about the calendar when he wants to talk about anything. He grabs the social group flyers from the coffee table. He loves going to Cape Cod.
So today I started writing a simple chapter book, and the first chapter is Max and Nat move out. Ned is going to find the right on-demand publishing software — probably Lulu — and together we are going to make cheap, bound, real books for Nat that tell him what he wants to know — and perhaps even more.
We went to a party at Nat’s house. It was all the families plus John, the manager. It’s weird calling him “John, the manager,” because he is so much more. I take pride in the fact that Ned and I found him. Well, the wonderful human resources person at the agency found him. With her, we were the ones who first hired him, right when Nat was done with school but had no group home yet. Our agreement with Department of Developmental Services (DDS) was to have Nat at home with as much staff time as we needed, so that our family life would remain stable. The agency we work with, Advocates, advertised with an ad I co-wrote, and John was one of the final candidates. He interviewed here and blew us away with his self-confidence and ideas. He wanted to be able to try this and that with his clients. He had so many creative ideas and was so eager to try.
John stayed with Nat when the first iteration of our group home came to be. He was a staff person among two or three. He was totally devoted to the job. He took Nat through his early days transitioning to a new home. He kept Nat safe, and happy. John went along to school with D, the new guy that was just moving into the house at the time, to see how the school worked with him, to learn about D. He put in weeks and weeks of transition efforts that really paid off. D and Nat settled in well together and remain a good pair. The next roommates worked out well, too, with John using the same techniques and care. I never forgot how impressed I was with the time John put into the guys in this way and so many other ways, and how quickly he got to know them.
Even though he sounds like an angel, John is not. John’s style is very controlling, very hands-on. He is as talented as he is opinionated. He can be downright stubborn and actually intractable when he thinks he is right — which is often. He told me that when he read my last blog post, he was surprised — not by how Nat expressed his desire for breakfast so freely, nor by how Nat went and just made it all himself — but by how unusual these things seemed to me. “Nat talks and does a lot more at home than he does with you guys,” he said point blank. I sighed to myself, knowing that mothers do get into these kinds of patterns with their children, where they don’t even see how much growth there’s been all along. For me, sometimes it is easier just doing stuff for my kids than asking them to do it or waiting for them to do it on their own. John does not mince words. He expects a lot and Nat and his roommates have blossomed under his watchful, tireless eye.
We took Ben to the party, too, since it was a family gathering. I knew that Ben didn’t want to go, that he had arranged to hang out with a friend around that time. But he rearranged his outing and went with us very willingly. I guess I expect a lot of grumbling from Ben when it comes to Nat, but it is not really like that anymore. It used to be terrible the way it was between them. But things are opening up. It’s almost as if the space Max occupied, as the brother who knows how to relate to Nat, opened up for Ben when Max moved out. I think at first Ben may have been overwhelmed by the chasm there between him and Nat. And I didn’t want to push for fear of Ben falling in. When Ben was little I used to try to appeal to his compassion, but it didn’t really work. Ben needed his own time and process. He needed to come to this on his own. He was not going to model his relationship after me. Nor after Ned or Max. What, then was it going to be?
That kid surprises me all the time. It’s probably time for me to stop being so surprised but I think I love the feeling when I am. Ben is such a mensch, which if you read me regularly I hope you know means “man” in Yiddish (and German) and means a person who really does what’s right and doesn’t make a big deal out of it. It’s actually more than just doing “what’s right;” it’s just doing and being pleasant and giving your full heart to the situation. A mensch is not someone who follows his “shoulds,” but who doesn’t even really think they are shoulds. They’re just life.
We left later than we intended and Ben had to alter his get together yet again. But in the car ride home Ben did not talk about any of that. Pretty much the first thing he said was, “I really like the way John relates to those guys, with this kind of sassy edge.” Perhaps John is giving us yet another gift: a way of dealing with Nat that Ben can imagine for himself.
Finding caregivers and respite workers is perhaps the most difficult task for anyone with a serious disability. Anyone reading this blog probably knows what goes into finding good workers for our guys and how we need to be sure they are trained! And then, we pray to keep them once we’ve found them.
There is a group out there that is working to make this an easier task, as well as a way to provide training for these workers. The nonprofit RewardingWork.org was started by a dear friend of mine years ago, as an organization that would help find caregivers for those on Medicaid or Medicare. Helping family caregivers is the most promising way to cut health care costs and improve outcomes for caregivers and consumers. Respite workers are key by giving caregivers breaks so they can continue their support, preventing institutional placement, hospitalizations and emergency room use.
One study found that if respite care delays institutionalization of a person with Alzheimer’s disease by as little as a month, the cumulative national annual savings amounts to $1.12 billion (Leon, et al., 1998). A similar study in 1995 found that as respite use increased, the probability of nursing home placement decreased significantly (Kosloski, K. and Montgomery, R.J.V., 1995). The total savings are potentially more significant as the value of supports that family caregivers provide is estimated to be greater than $450 billion dollars across the country.
Five hundred national and state partners in 11 wide-ranging states are ready to work with RewardingWork.org to expand their nascent respite network of caregivers, a web-based registry recognized as a promising practice by CMS, (the federal department in charge of Medicaid/Medicare) to increase the pool of trained volunteer and paid respite and direct care workers.
RewardingWork will 1) Provide a secure online resource to help caregivers, particularly those caring for veterans or someone on Medicaid or Medicare find respite workers; 2) Enable people of all ages living independently or with a loved one find workers; 3) Create metrics that track the impact of workers on financial and health outcomes to support a national program funded by MCOs and other payers.
You can help by voting for RewardingWork on the Robert Wood Johnson Grant Foundation website so that they can get a grant to continue expanding this valuable registry of workers! Go to this link, sign in via Google, Facebook, or other ways, and vote for this project! Leave a comment if you’d like, too! Thanks!
A lot happened for me 2005-2006. I started this blog, and began to hear from other people who understood. Some bad stuff happened too, things I can barely talk about or think about — probably the worst things so far in my life, worse than Diagnosis Day. But unlike that, these things appeared to be beautiful at first. But you know how it is, as long as you survived, it’s okay. Or at least, it’s over.
[Deep breath. Okay. Look at the sun, pull yourself back to the Good.] Perhaps the best thing that happened during that time was that I found yet a different form of self-expression. I started bellydancing, and riding a mountain bike. I’ve talked and written a lot about the two, but maybe not so much together. Only recently, when I started writing in different places than right here, did it occur to me that the two activities — dance and cycling — are opposite ends on my spectrum. And when the two coincide, I’m the rainbow in between. My dance name is Lilia, SusanLilia, and my bike is named Scarlett. Today I realized that I am Lilia, and I am Scarlett. I am a real bellydancer. I’ve known that for a while, though it took some time to admit it, because there is so much cultural baggage around bellydancing. Some people just don’t get it — the total immersion in the caramel-like music, the mastery of muscular isolations, the joy in seeing your body swathed in gem colors and sparkly beads. My body, though it is 50 years old and not at all perfect, becomes beautiful to me in those moments. I am at last the way I’d always wanted to be.
It is also true for my extreme opposite passion: I see that my bike is me. When I think to myself, “I just love my bike,” I am really saying, “I love myself.”
I guess sometimes I do. I think what happens is that I often start out my ride hating myself, or my life, things like that, but somewhere on the road I shift — literally and figuratively — into a new gear and though that gear is harder and higher, it is a deeper and more powerful ride. I thrill to the fact that I ride a big mountain bike which is a hard ride because you cannot go light like a road bike. And my joy derives from that fact, that I have to work hard to get speed, that I have to put all my bodypower into it to get my smooth cadence.
I wish there were better words for joy. But that’s it, aside from ecstasy, but that has the sexual edge to it, which biking does not. Joy is fresh, springlike air. Ecstasy is summer heat. Bellydance is thought to be sexual, but it’s not that for me. It is sensual, it is about happiness of the body, but not about orgasm or desire. Maybe for others it is, but I dance alone — with a mirror. My dancing, in full costume, is utterly for me. My audience is in my head.
And biking is also about being in my head, in a way that can only happen for me when I am alone and diving into the road or trail ahead. I become all about holding on and letting go. Planning and just going. It is a crazy mixture, and that is another reason I love it: it’s the coming together of extreme opposites, the point where they are one. I meld with the activity, until I am simply It, unaware of Me.
But it is me, I’m mastering this thing outside and inside of me, and that is happiness. All because I dared to come out at 42. I think maybe we should all become debutantes to our own lives.