Susan Senator

2/28/12

My Darling Nat,

Tonight you are in your new home. I am back here, at your other home. When I left you, you were sitting in the middle of the white couch, grinning and sucking your thumb. I know this means you were happy.

Nat, you are such a mensch. You always do what you can. You try so hard. You figure things out and you ask when you don’t know. I hope you remember that. There’s always someone whom you can ask, someone who cares.

You lived somewhere else before: Adams Drive. It was hard for me to get used to you being there, and so we brought you home every weekend. But that was during school. You were younger then. Now you are 22, a full grown man, and you are in a home that you got to choose. At least, you chose which room was yours. And you chose your colors: dark blue and aqua. You have a new dresser, and we unpacked and filled it up quickly: underwear and socks at the very top; pants at the very bottom.

We all ate pizza and salad at the table and the counter in the kitchen. There were a lot of us: Dad, another mom, a few staff people, your roommate and your brother Ben. The pizza was good. We also enjoyed the cake, which was shaped like your new house and had a Cadbury creme egg minivan in the Hershey bar driveway. It was fun and delicious.

It felt exciting being there, with new house smells of paint, spackle, and polish. The heat was on, and so the rooms were warm enough. I decided we needed some small blankets for the couches, because you like to snuggle in them. I’ll bring them by tomorrow.

In the car ride home, Ben rode with me so that I wouldn’t cry. You know that sometimes we cry when we are happy, right? And I am happy. You are on your way, kiddo, and I am so proud of you.

Love and goodnight,

Mom

Recently I was at a Special Olympics basketball tournament because my son Nat’s team was competing. I was chatting with one of his teammates, a woman in her late thirties, whom I’ll call Carol. Carol was telling me about her disability and about stuff she’d gone through. I was looking at her with sympathy and sadness. Despite being a supposedly greatly enlightened person, all I felt was overwhelmingly sorry for her. What kind of life did she have? Why do some people get so much and others so little? These questions were swirling around my head as I –God forgive me — cast about for an excuse to move away from her and my great discomfort.

Suddenly a guy, a twenty-something from a different team came bounding over. I had noticed him before; he didn’t look like many of the others on his team. Because of his muscular shoulders and sassy attitude, I hadn’t been sure if he was a Special Olympics player or maybe a coach. Once he started talking, however, I knew he was developmentally delayed. Still, I admit I enjoyed watching him – I’m happily married but not dead, as they say. But then he put his arm around Carol, laughing with a wide gorgeous smile. I felt intrigued, and something else that I couldn’t identify right away.  So after he left I asked her who was this guy. “Oh, he’s my boyfriend,” she said. “But I actually don’t think so anymore because he calls me too much. He called me eight times the other day!”

Her boyfriend. But no longer her boyfriend because she felt like he called too much. Eight times! Well, I guess she was just not that into him.

And how many times had that happened to me? Well, it was so long ago that I can’t even remember. So here I was, moments before, half-listening to this Poor Thing, feeling relieved to be me and trying to find compassion for her. But not only was she not at all a thing to be pitied; I realized that she was also someone to envy.  Not just for her hot boyfriend; but also for her equanimity about the whole thing. I know that in my dating days I’d never gotten to a point of such maturity where I could decide so firmly that a guy was not worthy. Carol made it look easy.

So now I’m thinking about all the reasons people give not to label people, and especially not to use the word “retarded,” because of how hurtful it can be, how dehumanizing.  But the one thing you never hear about is how inaccurate it is, also. Implicit in the r-word slur is an assumption of inferiority. And often, too, even in the most well-meaning of us, there is this air of condescension that is utterly misplaced. Because standing there in that gym – self-asssured, well-heeled, middle age mom – though I may have looked like the one who had it all, Carol sure had something that I’d never had as a single woman: self-confidence and the admiration of a younger man.

Nat is not low-functioning. I hate that term. He would definitely be considered so, by many in the medical profession, and the rest of the world. I, too, have used it before and I am not going to anymore. I’m a writer, dammit; I should be able to come up with a better term.

There is so much in this blog about labels. I am too aware of the power of words to act like labels don’t matter. I am very tired of talking about this, and yet, I can’t stop. It keeps coming up, the question of whether to use Person First language, (“People with autism,”) or the other (“Autistic person”). Autistichoya makes very good arguments about the latter; Tim Shriver and the r-word campaigners makes very good arguments about the former. As always, my Libra self wants to be a bridge.

But I’m feeling tired of playing bridge. I’m worried about Nat and so I am going to be just his mom. I feel like what the hell does it matter, who calls him what. The problems, the guy, still remain. I love the guy. I hate the problems. I know I should be happy that he has a safe and supportive placement, one that I helped create. One that is going to have people there all the time. One that has made the future now.

The future being now is a scary thing. They told me that I could now have them take Nat to the doctor from now on. The staff is there for things like that. That they are to be responsible for all the medical and dental stuff being done timely, they have recently started using the best water flosser, and have said it helps clean the gums so much better.– state regulation. Hah, that’s going to be better than I’ve done. They also said of course I could still do everything, but they would need to keep track of it all, just the same. I’m never going to have to do those things if I can’t — when I can’t.  They’ll take him to Social Group if I want. They will provide an entirely additional Social Group. It’s all good.

Then why do I feel sad about it?

Because it is exactly what I tried to do, which is the hardest thing a parent can do: I planned for when I wouldn’t be here. I took care of it. But — my God.

And then there’s what I still can’t do, can’t ever take care of: helping Nat himself deal with my being gone. Anytime I imagine something bad happening to Nat and then — not even understanding why! How terrible, how horrible. That is what matters. That is the piece where functioning level is important and poisonously apt. Let me talk about it, okay?

And also, there’s this: my Nat is sometimes a puzzle to me, more than my other two sons who talk — oh, I’m not supposed to say those things either, right — and that saddens me deeply, too. That is a parent’s plight, that is a parent’s right. It doesn’t matter what we call it, the feelings remain.

One particular image that keeps intruding in my thoughts is Nat’s pale face in three-quarter view, his mouth and long jaw pointing slightly downward.  This was a day or two ago. It seemed like for hours Nat had been flitting from one couch to the other like, his skinny pointy limbs perched briefly, like a nervous dragonfly. The rest of us were clumped together in the living room, calling out things we’d read that were funny, our words popping in the air and amusing us like tiny firecrackers.

Nat, of course, was quiet and easily ignored (by the others, or so it seemed), but I was constantly aware of him. I realized that his presence there, staring and silent was making me feel sad, sorry for him. This is a typical feeling I have around Nat, I have to admit. And I want to know why.

So on my bike ride today, I let the image turn around and around with my fat tires, bumping along like the crenelated treads. As often on these rides, the mixture of still air (especially cold, still air), familiar music, and repetitive thoughts came together and formed an insight. I believe that we parent primarily through projection. Projection is another form of empathy, whereby we can connect to and understand another person’s frame of mind. From our children’s earliest days we have to figure them out because they cry, and so we learn about them through observation and intuition. Intuition is a knowing from within, without words. But where does this knowledge come from? Ourselves.

When I see Nat sitting silently and apart from us so much, I want to know how he’s feeling. I think back to when I was a child and how much it hurt to be on the outside of a group. So much so that I now avoid groups, for fear that I will be excluded. It threatened me to my core, somehow, to be a child that orbited others. I needed connection so badly, so deeply, that without it I may have felt as if I did not exist.  Some of that is still with me today, although I’m much stronger within now.

Nat orbits us most of the time, and his wolflike snout and wide wild animal expression in his eyes make me conclude that he is suffering. I connect the points with a story; I look at the evidence of his alone-ness and then I posit what that must feel like to him, because of how it feels to me.

On my ride I was listening to some song, I can’t remember now, and a phrase surfaced, that somehow caught my attention and made me think of this issue. In a flash I thought: if this is projection, then it is not necessarily accurately Nat. It is accurately about me. It is an expression of my experiences and my desires. For I wish more than anything that Nat would be part of things in the living room in the way that the rest of us are. Not only because I want to hear from him; but also because I don’t want him to be left out and therefore sad.

But it is I that fears being left out; I am the one who feels sad. Nat’s face forms a long lonely wall, but it might actually only be a matter of bone structure.

A few days ago I learned about an organization that is working to revolutionize the offerings to people with autism, post high school. CCCAID stands for Community College Consortium for Autism and Intellectual Disabilities, and CCCAID is all about fostering meaningful post-secondary experience for those on the mild to moderate end of The Spectrum. A CCCAID program is built at a community college, and with these federal dollars, offers academic, lifeskill, vocational, and most other real-world training needed for living and working independently or semi-independently after high school. In short, there is very little like it across the country, but the pockets where these programs exist have been phenomenally successful.

I’ve often talked about DayHabs and Day Programs in terms of my/Nat’s experience with them. A year ago we were shopping around, and it was hard to like what we found. It was hard even to understand what we were looking for. By now I know that a DayHab (Day Habilitation) is the traditional setting for people with moderate to severe disabilities to spend their M0ndays – Fridays, 9-3. DayHabs are Medicaid-funded and are built on a therapeutic model, meaning that the goal is to rehabilitate a client to whatever degree possible. Various therapies are offered throughout the day (I use the passive voice here intentionally, because most DayHabs feel precisely like that: passive).  At one of the DayHabs we checked out for Nat, he would be busy with table top activities and relaxation and socializing (read: watching movies) most of his day.

Needless to say, Nat does not need any further help with coloring, stringing beads, sitting, or watching movies. He passed those activities with flying colors long ago.  We chose a different DayHab that is far more innovative, but you have to know where to look.  You have to have energy like mine, and good luck with that! 😉

DayHabs largely do not offer vocational occupation or training, because it is believed that vocational training is not akin to therapy, so these dollars cannot be spent that way. DayHabs do sometimes provide employment within the setting, called Sheltered Workshops, where clients usually are involved in some kind of assembly work. There is mostly no going out into the community to volunteer or work or learn. Going out into the community is more about van trips. The DayHab is mostly a program that maintains its clients, rather than helping them grow.

Day Programs are different. They are work programs. They use Medicaid waiver money, meaning that the state gets half the money from Medicaid and matches the other half with state money. This makes the funding tight state-by-state. But Day Programs are the way that the clients get to work in the community. Day Program dollars pay for the job coach and the transportation, without which many of our guys can’t succeed.  Therefore the number of guys like Nat who work at all is pretty low.

So I am all about the Day Program, because that is where a guy like Nat can have a meaningful day: employment. But Day Programs cost a lot. And they can’t provide independent living training, self-advocacy, remediation, or academics. That’s why I went with CCCAID to Washington to meet with various key members of the House, Senate, and White House to spread the word about CCCAID in the hope of being able to offer far more autistic people a life way beyond DayHab. Why should I be saying, “Nat probably would not go to college.” Why not? Or why couldn’t he at least benefit from some of the employment training and learning available at community colleges? “This is a fairness issue,” Representative Kevin McCarthy (Majority Whip) said to our group when he met with us. And indeed it is. CCCAID, championed by Senator Tom Harkin, is hoping to increase its reach, utilizing Medicaid dollars and TPSID grants (started by the legendary late Senator Ted Kennedy).

And why should CCCAID be given this opportunity? Because they are a proven program.

Taft College in California was the first CCCAID program, begun in 1995, when that community college got rid of its football team and was then able to open dorms to students with developmental disabilities. These students received two years of training in advocacy, independent living, hands-on vocational training. They formed positive relationships with their employers and upon graduation, had jobs with places like Frito-Lay. Taft tracked their graduates for ten years and found that a decade later 89% were still employed and 91% were living independently.

Mild to moderate autism. Ten years later. Still employed. Not in need of the DayHab structure. Utilizing natural supports from a proven relationship with an employer (job coaches largely faded back). Living independently or semi-independently. This program works.

With the large numbers of the IDEA and post-IDEA generation aging out of the schools, educated and enlightened and ready for life in the world, shouldn’t we be trying to make sure that they are indeed ready for life in the world? If two more years of education could provide life-readiness, shouldn’t programs like CCCAID fosters be an option for ALL people on The Spectrum and with Intellectual Disabilities?

Ned and I went to Nat’s house-to-be today for a family meeting with the house manager. The guys are scheduled to move in on Feb. 28, so now we are getting down to brass tacks. Today’s meeting was for us to learn about staff scheduling and hours, emergency protocols, communication and meetings, remaining details, and checking in on the furnishings.

I sat with everyone around the table and at first I was in high-energized learning mode, excited to see the whole thing coming together, at last. I like all the people involved: the two other families, who are so much in sync with us and our values; the staff psychologist, and the house manager. Everyone was so positive. They call this a “learning program,” in that the philosophy is lifelong growth and learning for our young men. Structured, meaningful days, well-supervised nights, full and social weekends, and lots of time out in the community. These guys are really going to be part of our world, as the Little Mermaid would say. And it is their world, too; we are not planning anything without their tastes, hobbies, desires, and skills in mind.  Furthermore, the weekly meetings will be check-in periods for everyone, meaning the guys will meet with the house manager and the house staff and they will have a chance to express their wants, their questions, and their issues the best way they can; the staffers will go over schedules, safety, and house rules with them, as well.

Suddenly all my light dimmed, as if I were having a brown out. I think it was when they were talking about doctors’ appointments, and how they would be scheduled by the staff now and attended by the staff. I was welcome to come along, or even to continue taking care of this myself, but they wanted me to know that there would always be staff to do everything in place of me.  “Even if you take him home, there will be staff available if you need to keep him here for any reason.”

“What?” I said. “Ha, this is really a change.” And then my face must have crumpled a little, because H, the house manager said, “That’s the face that parents make when they realize what a group home means.” Ned and I no longer have to be on deck at all times. We are free to continue to be, but there is an equally powerful counterforce in place. This is forever. This is the future.  And it is all beginning on the 28th.

The rest of the meeting I felt like lying down. I didn’t; I took good notes and asked important questions. Everything is in place, down to the party we’re going to throw for the guys on move-in day. The plan is for us all to get as much stuff over to the house on the 26th – 28th, with and without the guys’ help. Then on the afternoon of the 28th, Nat will pack a suitcase of his remaining stuff and we will move him to the new house.

After the meeting Ned and I walked through the house, planning out exactly where the bed would go, and what else we needed to get for him (a desk and a bookcase from Target, I guess).  The sunlight was coming in the many windows (Nat has three in his room), warm and soft white. Outside I could see the lawns already greening up because of climate change, a mild winter, and the fact that it is already mid-February. Those three reasons give me a mixture of feelings: the solidity of the fact of seasonal change; the sweet treat of a warm winter; the slight pang of alarm at the distant threat of global warming.

And I suppose that these were also the feelings I had while walking the golden oak floors of Nat’s shared home: a solid feeling of safety and care for Nat; the sweet excitement of move-in and new things; and the sting of sadness from the sweeping change about to occur in our family.  But we’ve done this (somewhat) before, and now we have truly a house in the way we wanted it to be for Nat. We’ve waited a long time, all of us, to get it right.  But now that it is here, I am aware of a tiredness that could easily spread out into a sadness. I may need to cry. But I know that after that’s done, I’ll be ready.

Meanwhile I better get going on the cake plan.

Make no mistake, folks. This is the real deal. You want protection of people with disabilities, you gotta vote for Obama. The other party wants to get rid of social programs, to them it is a dirty word. So let me ask you, how do they propose to take care of those who need guaranteed supports, housing, vocational help? If you think that private institutions will do it all, think again. Think back to our history. Before we had social programs like SSI, Medicaid, and Medicare, how were the disabled treated?

That’s right. They were institutionalized. Private organizations, God bless them, can only go so far. If you let the entire population individually decide where all their would-be taxed income goes, you will be left with people only supported on the whims of others. A government for the many, a democracy, a government based on The Enlightenment, the social contract — and that is what the Founding Fathers believed in — a government like ours supports its most vulnerable as a given. A given.

Therefore it is a given that we must have mandated and funded programs to maintain the lives of the vulnerable, to take us through times when people are less inclined to give of their own volition. We need to increase the tax base — tax the 1% at a fairer rate — to pay for the social programs. We are in this together, folks.

Some people are tired of this, the same old answers. Spend money on these programs. But yes, it is a boring, tiresome answer. And there is no other way. Sorry. That’s the hard truth.

Some people ask, “What about all the waste?”  I invite them to look into these programs. Find the waste. Look at the people served. If you find problems, fix them. Cast a light on the waste, yes. Deal with that. But don’t cut and dismantle. Improve. This system has been working, but it can be improved. Sure, it’s a relief to be told simply “Get rid of it, let us have our money for ourselves!” But it is not a reality. It’s a simple answer. It’s a false answer.

Take a look at this: President Obama’s wholehearted, direct support of the Arc of the US. What has Newt Gingrich, Mitt Romney, or Rick Santorum done for the Arc lately?  God bless President Obama, a direct link to our Founding Fathers. If you don’t believe me, read Jean-Jacques Rousseau and then read Thomas Jefferson.  Find out more about Classical Liberalism, the keystone of our country’s beginnings. Don’t let Newt et al. dumb it all down.