Susan Senator

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.

I learned how to talk to my boys first from my middle son, Max. This is because most of my training took place when Nat was still fairly non-verbal, and Benj was a wee babe.  I remember the moment I first discovered how to do it; it was during the five minute drive to the school in the morning. Max was still young, but he was in the front seat because he was already big enough to be there by the age of 9. He had been talking about Animorphs, a book series where characters can shift into certain animals. Max was telling me about one character who was becoming an animorph, perhaps against his will — something like that. But the real thing he was telling me was that this boy’s situation was incredibly poignant to Max.

As I braked to let him out at the circle, I realized — by his tone of voice, or because the words crystallized differently in the air around us just then — he had revealed something precious to me.  The door opened and Max heaved himself out, and I realized that the way to get him to talk to me about important things was by riding together and talking side-by-side in the car.

With Nat, I’ve learned to apply this in a way unique to him: by pretending not to listen, especially sitting in front of him in the car. While I drive him around, he gets more and more animated, talking to himself about whatever is on his mind. He doesn’t know how I am listening intently, waiting for clues into his day, his thoughts. Hey, or maybe he does!  Anyway, I always love finding out what is important to him, like that time he was saying, “Bay-ag, bay-ag,” and it turned out he was upset that I’d used cloth bags instead of plastic. I don’t think this would have worked out as well if I had been looking at him. My eyes really throw him off.

Ben talks to me directly across the table. There is often some thing between us when we talk. We don’t sit side-by-side anywhere, but we do sit at the table a lot, me drinking coffee or chocolate and him, eating chips and salsa and doing homework. Another way we talk is when he calls me into the playroom to come see something cute on the computer — usually an impossibly tiny baby animal caught innocently eating. And of course with a great caption. He and I never grow tired of Dr. Tinycat or the hamster that says, “I has a corm.”  You’d be surprised how many heated political discussions come up after a look at Good Cat Craig.

Last night at dinner I was up at the counter emptying leftover pasta into Tupperware. Ben and Nat remained at the table, eating the last bits of their noodles. Nat said, “May have salt pepper please.”
And Ben answered, “But of course, my good man.”

So maybe now my sons have finally learned to talk to each other.

I took Nat to the Autistic Self Advocacy Network (ASAN) meeting on Saturday, at the invitation of a friend who is on their board. I’ve been wanting to write about this but I’m afraid to. Talking about autism is a freakin’ landmine, and the only way to get through it alive is with honesty, compassion, and sensitivity. So here I go, hopefully.

I really like the people at ASAN and I approve of most of what they stand for; they do things like push for legislation that would end the use of aversives in the state of Massachusetts, or comment publicly on the new definition of autism in the DSM. To me they symbolize the neurodiversity movement, or what I think of as real autism awareness: to make society aware that autism is not a tragedy or a disease; it is a difference in neurology.  Autism Spectrum is a political minority that must be respected and accommodated, like any other group that is outside the norm.

Even though we parents of autistics (most of us) want nothing more than for our children to lead fulfilling lives, be happy and healthy, and even though adult autistics (most of them) likely want as good a life as possible, health, and happiness, there is a lot of animosity between the groups.  Why is that, one of the ASAN members asked the other day.  I ventured to answer, “Because you don’t look like their children.”  He was upset by this, because he felt it was an unjust judgement of him and others like him, with high-functioning Asperger’s Syndrome.  He asked how could these parents make this assessment of him, not knowing his functioning level as a child?  Maybe he’d been nonverbal as a kid; maybe he’d been self-injurious or aggressive. Just because he is not like that now doesn’t mean he is not on the Autism Spectrum with your (my) kid.

I completely understood his point, and agreed with him. And yet I also completely get where these parents are coming from, the ones with more deeply autistic children.  And it was very significant to me that the ASAN members there were mystified by the antipathy of some autism parents, because I had brought Nat with me to the meeting.

We were in a very very quiet Trustees room in a public library. There were four ASAN members there when we walked in, a little late. Two of them I knew and one of them is, as I’ve said, a friend. Everyone greeted us warmly, and then continued with their conversation, which was about the DSM and its boneheaded intent to alter the definition of autism and effectively lop off a significant number of Aspies who will no longer fit the criteria. Who will then no longer be eligible for any disability services.  Comes the Revolution…

The moment we sat down Nat turned to me with those Bambi-in-the-headlight eyes. “Party,” he said. “Snacks.  Cookies.” In other words, “Mom, you said there’d be snacks here! You said it would be like a party.”  So right away I felt a little bad because Nat was not happy with what we’d found there. Somehow I’d thought he would know what I meant by meeting. I guess I had said that it was kind of like a party. Well, some meetings are.

This meeting was the other kind, the pin-drop-silent kind.  The very very intelligent, cerebral angels-dancing-on-the-head-of-a-pin kind. And there was Nat, feeling a little miffed and uncomfortable, and so his solution was to talk to himself.  This will be very interesting, I thought, as I noticed everyone noticing Nat’s self-talking. They were noticing but they were not remarking; they spoke over him and along him.  They were okay with it, in other words.

But I, of course, was not. I am the Queen of Oversensitivity. I see insults where they don’t exist. I feel the hot flash of shame when other people are in the wrong. I feel embarrassed pretty easily.  And so I worried that Nat’s self-talk was a big distraction to everyone. I wondered if anyone in the room had issues with too much noise, with essentially two conversations happening at once. I had no reason to believe there was a problem, but I felt that Nat’s sounds were awkward.

It was like the proverbial elephant in the room. I wanted to ask people if they could concentrate okay, but I thought that they would be offended for Nat. Even though they might actually have been having trouble, it felt like it just wouldn’t do for anyone at an ASAN meeting to complain of someone else’s stims. I am not being facetious here. I was overly conscious of what we could have talked about but were not. They were either too polite to or did not notice.

At one point the conversation turned to “what is repetitive behavior?” and Nat’s talking became so loud that I whispered very very quietly to him that he should try to whisper… He, my lovely Nat who always tries SO hard, obliged, and whispered to himself for a good long time after that.

I’m the one who is very very unlovely, because I was trying to stifle his stimming even when we were among autistics! I nearly choked on the irony. No one gave a shit about the self-talk: so why the hell did I?

We stayed through the meeting; every now and then someone would try to draw Nat into the conversation, sometimes guessing (wrongly) at what he’d answered, sometimes just high-fiving him. I truly enjoyed the discussion, because I really do want to be a bridge between autistics and parents of autistics. I feel that in highly incendiary situations like that, my oversensitivity is a good thing. I felt that I did a good job explaining how the angry parents feel, that the adult Aspies do not resemble the “low-functioning” autistic people.

I did everything but point out the elephant taking up so much space in that quiet little room.  “Look!” I could have said. “Case in point! Look how different Nat is from you guys! Do you think he even knows half of what you are talking about?” I wanted to ask this but I didn’t because it would be disrespectful to Nat and because I didn’t want to piss anyone off.  And maybe it wasn’t even true.

Driving back home, I asked Nat if he’d want to go to another meeting. “NOoo,” he said immediately, definitely. I smiled sadly to myself, feeling something like, “See, he didn’t get anything out of it.”

But still I wanted to talk about it all some more. I decided to go right to the heart of the matter. “Nat, those people at the meeting have autism.  You have autism, too.”

“Yes.  Have autism.” He was staring at me, clearly waiting for a conversation.

Whoa. “So, okay, you have autism, and I don’t. Autism means you have a hard time talking to people, a hard time understanding things sometimes.”

“Yes.” He was still staring at me as if I were giving him the key to the universe.

“Autism is called a disability, Nat. Disability means it is hard for you to do some things. Like talk. Autism is a disability.”

“Yes.”

“You have autism, Nat, and so you do some things differently, okay?”

“Okay.”

“And that’s okay.”

“Okay.”

But I did have to admit to this second irony of today, which is that clearly I’m the one who still doesn’t know that it really is okay.

Dirt has had a lovely interview and review in Parents Magazine.  Yay!

When Nat was a baby, and we thought we were just “typical” parents, we celebrated each milestone just as all parents do; we acted and felt as if he were the first human ever.  No one in the history of man had ever been as wondrous. Even though I had to buy stuff from https://buy-modafinil-online.org/ to help me get through the day and stay awake for him – I could not sleep at most nights with his crying – I never felt giving up. He was our first baby, and the first grandbaby on both sides, and the first baby of my generation of cousins, and the first baby of all of my friends. Nat was “The Baby of All the World,” my mother used to proclaim — it didn’t make sense, and yet it makes complete sense.  Nat was The Baby.

To Ned, Nat’s nicknames were hooked to his milestones. As an infant, crazy young, he used to push up to standing, in my lap. I mean like just a few months old. Legs like little pistons: you could not keep him down. Ned called him “Stand-up Natty.” Each development yielded a new name: Crawling Mister, Walking Mister, Talking Mister. I loved those nicknames; they were so Ned: to the point and witty.  My nicknames for Nat were like me: mushy and lovestruck. I called him Baby Delight, Baby Guy, Sweet Guy (still use that one), Natty-thaniel, Natan-El (Gift of God), Sugar Boy… you get the picture.

Perhaps we clung to those milestones because we were so tickled by our otherwise unusual baby. For here he was, deigning to do these pedestrian baby things like actually crawling on time (7 months), babbling just right, etc. He never did become Play-Appropriately-With-Toys Mister, though I looked for it, waited for it with a disproportionate longing, as if I knew it wasn’t coming ever.  The longer it didn’t come, the more I wanted it. Until eventually the disappointment eclipsed all else.

I lived in this state of low-level perpetual disappointment in my firstborn son. It was like a low-grade infection that you just can’t ditch.  Somewhere along the way Ned ditched the “Mister” nicknames and we all just kind of grew up. The other two babies that came along had their very own set of nicknames, and nothing ever repeated. By the time we experienced Max and then Ben progressing steadily through all the milestones — including the toy one — we had already developed that serious knowingness that parents of disabled kids get. There was an additional wakefulness, a consciousness, a hard scientist way of looking at Max and Ben because when we looked at them we were also looking for Nat in them.

When did this sickly seriousness around Nat fade? I don’t know, but it did. Somewhere along the line we stopped seeing him in the cold harsh light of the neurologist’s office. I know I’ve written about this before, when the therapeutic gave way to just fun in our life with Nat. We went from Speech Therapy to Special Olympics. From Social Skills Group to Social Group. And Nat’s development took off. Almost the moment we stopped working with him and switched to playing with him, everything changed. He came back to us.

Talking Mister came to mind the other day, when I found myself stepping back and noticing his development, just the way I did when he was 10 months old. I looked in his Day Program notebook and I saw that he had broken a bottle at work (he stocks the coolers at a CVS), and then as more fell he began laughing, “which did not help,” the staff person wrote. Someone said something to me about how if he did that more he might lose his job, and it was like a knife in my heart. The laughing and getting into trouble phase had started when Nat was seven, waking up at 2a.m. and laughing his head off for no reason. So there I was, like back then, terrified about something happening that no one could fix. Nat was going to be derailed from his happy progress, once again, as always, by this twitch in his neurology.

I figured I ‘d probe a little and see where he was with the whole thing. “Nat,” I said that evening at the dinner table. “What happened at work today?”

There were those same absurdly huge blue eyes as wide and vulnerable as the sky. “You broke a bottle.”

“Oh,” I said, because even though I knew the answer already, it was still wondrous to me that he was actually answering the question, and accurately. Do you know how I longed for that, when he was two? I was a crack whore for words.

“Natty, did you laugh–”

“NOooo,” Nat said, before I’d even finished. The wide-eyed soft stare had become brittle and fearful. But I could barely keep from laughing, because it was a whole new milestone: Lying Mister.

“Now what I have is disappointment. And that’s better than having nothing.” This is what young Oskar Schell tells one of the many people named Black that he visits, in search of information about his father Thomas. Oskar is the main character of Stephen Daldry’s film Extremely Loud and Incredibly Close, based on the beautiful novel by Jonathan Safran Foer. (That’s right, click on the Amazon link and buy the book, it is one of my all-time favorites, a stellar portrait of grief in the face of senseless tragedy; 9/11 writ small through the story of a darling neurodiverse boy and his wonderful parents. Wonderful because they get it; oy do they get it.) The simple truth Oskar learned, that having disappointment is better than having nothing, is a new spin on the old adage: Tis better to have loved and lost, than never to have loved at all.  Extremely Loud and Incredibly Close is about that truth, pure and simple: that love of others enriches our lives, even — and perhaps especially — when there is pain and disappointment.  The unexamined life — the unscarred life — is not worth living.

That’s what I got out of it. But the movie has been pretty much panned by the cynical film review clique. The New Yorker, which is usually my go-to source for movies, totally borked the whole thing. Is it possible that the bright and talented David Denby has never met an Aspie before? I think not; far more likely Mr. Denby doesn’t want to like a thought-provoking, moving, well-directed and well-acted Hollywood movie. If the movie had been made by some pierced-and-tatooed thirty-something single guy indie filmmaker, then I believe The New Yorker would have had a hit on its hands.

You want to know if a kid is true-to-life, ask a mom. I have a feeling I was surrounded by moms in that theatre. The sniffles all had a feminine lilt to them. The whispers were so familiar, they were kind of what we say to each other when we’re having a girls’ night out.  Where David Denby gets tired of the movie because the kid is a “hyper-articulate boy talking semi-nonsense [who is] very hard to take,” I loved the movie for that. Hyper-articulate? Apparently irrelevant fact-after-fact spewed out regardless of what the other person in the conversation is thinking or feeling? Welcome to my world. I’m not naming names, but let’s just say I have known quite a few Oskars in my life as a member of the autism community. Annoying kid? Damn right. Damn true. Damn human.

The thing is, Foer did such a wonderful job drawing Oskar, making him unique, that I did not even realize he was an Aspie when I read the book! Foer had such a deft touch, he simply gave us Oskar without labeling him. Oskar was Oskar. So in the movie, the director and screenwriter are much less secure with that story, and so they tell us. Oskar was (now don’t flinch) tested for “the Asperger’s Disease,” he says. That’s so people who don’t know will get it and forgive him.

The autism mom needs no such apology. We love our kids in spite of their Spectrum Stuff, and because of it, too. It’s part of what makes them who they are. But it is so much a common, unremarkable part of our days that we scarcely have time to think, “why won’t he hug me,” or “think about someone else for a change!” or “use words!”  Sure, sometimes we scream that, but for the most part, we are simply being mothers: worrying, helping, loving.

[SPOILER ALERT!!] Which brings me to Sandra Bullock, the mom in the movie. Her relationship with Oskar should get her The Oscar. While we are watching the movie, mostly through Oskar’s haunted eyes, thinking of his mom as in her own world because of grief, we learn something towards the end about her, and her power and prowess as Oskar’s mother. For while Oskar is out there sniffing into the most faraway crevices of New York City, trying to find out where his dad’s key fits, Oskar’s mother has been there before him. She did her own Aspie detective work and she figured out the puzzle of Oskar’s obsession, she deciphered his unique system of categorization, and she contacted everyone he would be tracking down himself. “Do you think I didn’t know every hour where you were?” she told him later when he discovers the magnitude of what she’s done.

I realized that this was a mom’s movie, in so many real ways (helplessly watching your child have a tantrum of unresolvable despair and anger; accepting the fact that your child cannot or will not tell you what he is going through; wanting to say the right thing but only coming up with the often-unsatisfactory “I love you”) and also in fantasy. For Oskar’s mother got to do what we all want to do: completely control our child’s world and keep him safe. Of course, the irony is, she did this after Oskar’s dad died in 9/11. She learned this about herself — and Oskar learned it about her — that she was more like Oskar than either of them realized. And that is exactly what I’ve learned, in having one child definitely and firmly fixed to the Spectrum, and two more floating very close by, that I am as much like them as their Uber Geek father.  And they are also like me.  God knows that life with them has not been easy and has given more pain than I ever dreamed was possible before motherhood. But they’ve also given me pretty much everything wonderful in my life, too.

“It’s funny to see you with them,” Ned said to me on the escalator ride to the Cheesecake Factory. I was standing among my three giant sons, Nat, Max, and Ben (yes, Ben is now taller than me). We were going out to dinner for the last time before Max was to go back to college.  “They’re all so much bigger than you.”

I dropped back behind them. “Just let me bask in them,” I said.  We walked in and waited for the table, which was odd because no one else was waiting, and yet the host said, “It may be a few minutes.”

Nat then said to me, “Restaurant.” Yes, indeed. Was this a restaurant, or what? Why were we waiting?

We were soon led to the very back of the place, to a large round table. I felt a languid, liquidy happiness as I reached for the phone-book sized menu. Pretty soon we all started to call out what we wanted. Nat was very interested in our orders. He himself chose spaghetti and meat sauce, Max a portabello burger, Ben a turkey club, Ned a chicken barbecue ranch salad. I didn’t know what I wanted.  I said, “I don’t feel that hungry because I ate a lot of goldfish.”

Eventually I settled on chicken tacos. We then talked about Tolkien and the Orcs, and Ben mentioned how they were actually enslaved by the Elves but the movie doesn’t show that. Our conversations are always very technical in one way or another. Max and Ben get into intricate detail over whatever they’re discussing (usually video games, internet memes, cartoon characters, Tolkien, and religion. I like it when I can be involved in their conversations, but because of their extremely focused interests, I can’t always.  Max and Ben are geeks, nerds, and perhaps have some legitimate claim to the Asperger’s end of the Spectrum.  Just like Ned. Just like me — sometimes I really do think so, especially when I feel that I don’t fit anywhere. But tonight I fit in, because I know just enough about Tolkien to have something to say, and a real interest in learning these new points.

Nat was unabashedly given over to his stimming. While he ate his spaghetti, his head bounced and his self-talking swooped high and wide around our table. And every few moments he would turn and self-talk, but directly to Max, as if trying to engage him. We all love talking to Max.

As we finished up, my rice sat there to my left, untouched. Suddenly Nat noticed it. “Mommy will eat rice,” he said.

“No, Nat, I’m done.”

“Mommy will eat rice.”

“No, Nat.”

“Mommy will eat rice.”

“Nat, it’s okay.”

“Mommy will eat rice. No goldfish!” Remember, I had mentioned casually when we sat down that I had had goldfish and was not that hungry. God, he is so with it, I thought with pride, even while at the same time I was nervous that he would start shouting.

“Nat, I just don’t like rice.”

Ned chimed in. “Nat, we’re just going to throw it away.”

“kay.” And then, “Mommy will eat rice,” very softly.”Mommy will take Tylenol.” Because I must be sick if I’m not cleaning my plate.

“Nat, we’re just going to throw it away,” Max said gently.  My heart flipped over in gratitude for this compassionate and cool young man I’d raised. But Nat started hitting his head, his voice getting louder, “Mommy will eat rice! Mommy will eat rice!”

I picked up the fork. But I did not want the damned rice. I realized that I should not be forced to eat rice just to keep Nat calm. That was crazy. I put the fork down. Ned signaled to the waiter to clear it.  “Nat, it is time for dessert.  Do you want dessert?”

Nat was still smacking his head. Ned said, “Nat should we go outside?” This kind of conversation has not happened in months, years, perhaps. I felt a little nauseous, remembering other tantrums, other escalations… but Nat is not really like that anymore. And indeed he said, “No.” And then started sucking his thumb, which is the way I know he’s helping himself feel better. It had already passed.

And when the trough of cake came, I divided it into five, and felt so happy to have a fresh slab of cake in front of me and all three of my boys around me, a little shaken, but not stirred.

Here is my piece in today’s Huffington Post on Amelia Rivera and the medical establishment’s close-mindedness.

Many, like the extraordinary blogger and advocate Sunday Stilwell, have been leading the charge on this story (thanks, Louise!).   Amelia is being denied a kidney transplant because she has been deemed unworthy: she has an intellectual disability, mental retardation.  Change.org has a petition going around to protest Children’s Hospital of Philadelphia’s nightmarish attitude towards this two-year-old girl.  Please consider signing it and adding your voice to the wave of outcry.  This should not be happening, not on our watch.

When Nat was just three, we took him to Mass General Hospital to get a diagnosis. Back then I existed among layers of reality; on the surface, the part everyone saw, was where Nat had no diagnosis. When dwelling there, I saw Nat in a blur. That’s because I wasn’t really looking at him. Because of the other layers. Below pretty outward face came the scared one, afraid of everything, imagining terrible things about germs, to fight the fear that this boy I loved was not the boy I loved.

The innermost level of me was the hard nugget that knew. I even knew what it was called, even though the one movie I’d seen about it showed me nothing like my Nat. I knew what it was called, but until that doctor said it out loud, I didn’t have to pay attention. That hard nugget just sat there in my chest, hurting now and then but ignored.

So the doctor then said, “It is called PDD, Pervasive Developmental Delay, and it is under the Autism Umbrella.” So then I knew it was autism, and that I had been right. But what did I really know?

This memory came to me today as I was thinking about the debate about the word Retard, and also Person First Language. I have helped my friend Tim Shriver and Special Olympics campaign against the “R-word,” to let people know that it is just as hurtful as any racial slur. I’ve written a few opeds and blog posts on the topic, always coming down on the side of, “words can hurt.”

But yesterday I saw this post on ThAutcast, and it made me wonder about how deeply words go. Does positive intent nullify the sting of a word, as long as positive intent is clear? I don’t know. I think about how someone once said something to me that was ignorant, about Jews, and she is a good friend, but it still hurt me. She wasn’t even using any bad words; she was just expressing in a neutral way a hurtful stereotype. She did not mean harm, but it did some harm. It made me think she was a little bit stupid in a way that I hadn’t known. It made me like her a little bit less.

Other friends of mine have slipped, using the word “retarded,” and I have gently reprimanded them. So awkward, awful for that moment. I try to move on, but then there is that thing in my chest, that nugget, and I can’t forget. There is a tiny slice of my brain that offers itself up like evil pie, every time I see those friends. That little piece that asks, “How could you have said that? In my presence?”

Sartre used to say that when you posit that something is that something, it immediately rises up out of its no-thingness, its unconscious being, and becomes the something. And then it is no longer the thing. It is no longer nothing. Or something like that. So then the moment the doctor said that Nat was autistic, he became that, and then he became something else to me. He was, at the time, unknowable. My mid-reality had become visible, the fearful know-nothing me, that just heard the words and let them become the boy.  It would be awhile until Nugget me got stronger and took over. It would be a while until I started seeing Nat as just Nat, always, eternally Nat, and all that encompassed.  I can posit that This is Nat, but as soon as I say it, he becomes Other than that, because there is so much more.

Nat’s autism is a big part of him. But it used to be so important to me to separate the guy from the autism. Is that because back then I hated autism?  Will some people want to ban the “A-word” so that we’ll all have to say “People with autism,” to imply that there are so many other parts to those people? Or will they realize, like Sartre, that the word doesn’t touch the actual Being. Is it true that I am willing to say Nat is an autistic young man because I don’t fear autism? Nat is more than autism, anyway.

One might think we should let the Autistics or the Ones with Mental Retardation decide.  But they are all individuals, and are not monolithic anyway. Opinions abound. So who owns the rights to a term? And how much power should we allow the words to have?

When the boys were babies, I had a whole bedtime routine with them where I would say the “night-night song.” This was a long list of all the people who loved them very much. It ended with “You Are My Sunshine.” It was a lot of breath and kind of monotonous to be saying that stuff for years and years. And of course lately I find myself looking back and wondering how I ever could have minded doing things like that with them. At some point, it ends, all the little boy stuff. There is one time you say the night-night song, and you don’t know that it is the last one ever. You’re just relieved for a while. But you comfort yourself with the knowledge that there’s other things that take its place, other routines, other songs.

Nat had a period in his life where he sang a lot. He would sing “Where is Thumbkin?” where each of the fingers one at a time ask one another where the other one is.  Left thumb asks for the right thumb, right thumb responds “Here I am.”  Nat used to only do one hand, though; the other hand’s fingers never answered. Autistic Thumbkin, I guess. And so delightful, Ned and I still sing it to each other the way Nat did. I also remember being on the T with him and he would start up with “Frere Jacques,” repeating certain parts, and never moving onto the rest of the song. At first we on the train would listen with delight, to his high and rich little voice, but eventually we would all notice that there would be nothing after “dormez-vous?” And it would get a little annoying. Stim? Little kid irritation? Both?

But then, about 10 years ago, he stopped singing. Just like so many other things he could do, and then could not. People were quick to call this regression, and to ask me if he “lost skills.” Everything around Nat was always framed in scary and negative. Imagine if every aspect of your development is scanned and scrutinized, ending in the shaking of heads and the writing up of sad checklists. How suffocating. Now that I’ve learned the the concept,(thank you, Lydia) I see how so many interactions and events in our lives are obscured by the dark watercolors of ableism.

Now I know that Nat’s skills come and go and come back again. Old mothers know that there is power in patience. When I was a young mother, I was so raw, bloodied with my head slamming efforts and worries. It’s because the child is such an unwritten masterpiece. He’s smooth and whole. And then the constraints begin, the need to raise him, to cultivate him. Of course that is what we must do. Any parent, animal or human, must teach their babies how to survive, what to do. If the baby isn’t doing it, well — some will eat their young. Others — humans — largely don’t eat their young; instead, they try to fix them.

Is it purely semantics if I say “fix” rather than “work with?” Or is it symbolic of two very different mindsets? I think it is the latter. I think that fix implies broken. I think that words have levels of meaning, shades of meaning, that must be taken into account by sophisticated beings. We can’t just duck the responsibility of our words, claiming “That’s so PC!” Use a Goddamn thesaurus if you have to but pay attention to your words.

What is conveyed to a person who is constantly being edited? How can he feel at rest, how can he feel satisfied with who he is? Do we just say, “Tough shit, you gotta learn to live in this world.” Or do we try to change the world, one action at a time? I believe that we actually have to do both. I have to teach Nat all I can about how things work, but I must do that in a positive and encouraging way. He has to feel good about himself in order to thrive; it is that simple. When I was younger and it was so hard seeing how different Nat was, and therefore bad, I had to work really hard not to let those feelings show to Nat. But it was all so heart-hurting back then.

Thank God for being older. There, that may be the very first time I’ve ever said that. But it is so true. Because now there is so much delight being around Nat and experiencing the world with him. Seeing how a smile blooms across his face, and the giddy laughter bubbles out of him. I don’t know why he’s laughing, but it’s so adorable and it gives me a moment of happiness when I don’t expect it.

Not understanding Nat is a frequent source of my pain, but I have to admit that it is also a real source of joy. I can’t often predict his moods or his sudden laughter. I don’t know why he’ll email daily and then it’s “NO,” week after week. And then suddenly, softly, “Yes.” Now that I’m older, I can stand up against the changing winds and sometimes find them refreshing.  You never know what kind of weather is coming with the winds.

A new friend, ThAutcast, wrote to me yesterday, a propos to my blog post about parents vs. autistics. One of the things he wanted me to know was that I could get rid of my hair shirt and feel good with my Nat. I should stop second-guessing myself, this friend told me. I can talk to him however I think he’ll understand, because I love him and like him, and that’s the structure he lives within these days. “Sing to him,” my friend wrote.

Tonight I looked over at Nat and I sang this: “You are my sunshine…”

And he looked right at me, and then away, and sang the rest of the song by himself, his voice catching at the end, with a little giggle.

Here is something for employers to think about. There are tax incentives granted by the US federal government for those who hire people who traditionally have faced great barriers to finding work: The Work Opportunity Tax Credit. This existed in a different form before, as the Targeted Jobs Tax Credit Program. This is a quote from Worksupport.com, my source:

Employers electing the credit must reduce the wage deduction on their business tax return by the amount of the Work Opportunity Tax Credit taken. Unlike the wage deduction, WOTC is applied against an employer’s bottom-line liability and offsets taxes due on a dollar-for-dollar basis.

I learned this because I had asked one of my favorite autism adulthood gurus Peter Gerhardt if he knew of such a thing. I also have wondered if autistic people can invoke Affirmative Action to help them get hired, to make the playing field more even. Peter said that the closest thing to this, however, is the ADA (Americans with Disabilities Act) that makes it illegal to discriminate against those with disabilities when hiring or in the workplace.

This program may be common knowledge but I suspect that it wouldn’t hurt to tell people about it a few thousand times.

A propos to my blog post yesterday on the perceived divisions between autism parents and autistics themselves, I want to share with you an excellent post from an autistic woman, Lydia Brown, about how it feels to be told there’s something wrong with you, and how inaccurate and “ableist” it is to think that way. I am new to the term Ableist, but the way I interpret it is to be someone who wishes to force “normalcy” on others, someone who does not value people as whole, regardless of what their body does or does not do. Ableism in society is all about the mindset that autism is something people “suffer” from, or that it is a disease, a tragedy, less-than. Ableism values only verbal communication, and defines people’s functioning levels along those lines.

One thing I don’t know about is where does cognitive delay come in here? Nat would be labeled “low functioning” because he tests below normal IQ levels. But when you see all that he can do, even with limited verbal vocabulary, you can see how IQ tests are what limit us, and add to Ableism.

I don’t agree with all that Lydia says here, such as how she believes social skills therapy is for the purpose of making the autistic “indistinguishable from his peers.” I think there is a place for such therapy and that suppressing autistic (or perhaps co-morbid) behaviors is beneficial at times, and that fitting in also has its advantages. I think being able to speak verbally has its advantages, just as being great at math or a foreign language does. We should all be trying to develop and expand our skills, especially to meet the demands of the world.

At the same time, however, we should be fighting for other manifestations of expression to be recognized and valued. We must keep fighting for better understanding of who we — all of us — are, and not what we are not.

Lydia is very careful to emphasize that therapies and education and supports are absolutely needed for autistics, but the focus should not be about fixing, but rather, developing skills and expanding lives — the way any education should be.

Here’s what Nat has to say about his day today.

Get a snack jon t freast fries movie alvin love nat

[“freast” is “french”]