Susan Senator

Dinner out at the same restaurant we’ve all been going to for years. Years ago at this very same restaurant, Nat demanded that Max remove his knit hat. But Max was at the age where a boy wants to wear a hat. So he said he didn’t want to. I squirmed, wanting Max to be able to wear a hat if he wanted to, and wanting peace. While I squirmed, Nat reached over and clawed Max, drawing blood. I felt as if I’d been stabbed. I blew it, not acting in time. Not protecting Max in time. Not figuring it out. What was the right action to take?

Okay, full disclosure, it turns out the hat Max was wearing was one that had been given to Nat for Christmas. Max had borrowed it, without a word, and none of us thought Nat would mind. Or maybe even notice. I don’t remember anyone asking permission. So here’s a stupid question. Do you think that Nat minded, and was that the reason he wanted Max to take off the hat? If you ask Ned, no. If you ask me, probably not. Nat does not seem attached to objects like hats. Well — it still wasn’t right for us to let Max just wear the hat. But most likely the thing that upset Nat was that he needs things to be a certain way, rather than the fact that it was his hat.

Either way it upset Nat. But Max had a right to keep his hat on. (But it wasn’t his hat.)

We gave Max the hat as a punishment to Nat. Max wore it for years. That was the last time Nat ever hurt him.  The memory of the whole thing makes me feel sick and terrible.

So then tonight, same restaurant. Nat sat down and watched, wide-eyed, for everyone to take off their coats. Ben was slow in taking it off one shoulder. I watched, wishing he wasn’t so slow, remembering the other time. Nat watched, too. “Don’t worry, Nat,” I said, “Ben’s taking off his coat.”

Ben stopped taking it off and stared through his lanky hair. I actually said in a cringy begging voice, “Ben, come on, please?”

Ben just stared. Nat stared back. Ben said, “I’m cold.”

I looked at Ned, unable to deal with it. Ned said, “Nat. Ben is going to keep on his coat. He is cold. Okay?”

It’s not going to be okay it’s not going to be okay it’s not going to be okay, people are going to stare, and we are going to have to leave. And I was ready to sacrifice Ben’s comfort to assuage Nat. But now Nat’s gotta feel uncomfortable and that sucks, too…

But then Nat said, “Okay,” and then smiled.

I asked Ned about it later and he said, “Well, I think that for it to be okay with Nat, you have to feel certain that it is okay yourself.  If you’re calm and certain, he’s calm and certain.”

Hat’s off to that.

Please do not support Representative Paul Ryan’s proposal regarding the budget and Medicaid. It is simplistic and naive. We cannot get rid of our budgetary woes on the backs of seniors and the disabled. It’s expensive to take care of people who need care. But you can’t just say “screw ’em!” My friend and colleague Cathy Boyle, founder of Autism Housing Pathways, sent me this important breakdown of what Ryan’s proposal would likely mean for adults with disabilities. (By the way, if you are a frequent reader of my blog, that must mean you care about people like my son Nat. If you want to help adults with autism in terms of helping them secure safe housing, then please give to Autism Housing Pathways. Those dollars will go a long way.)

Here is what AHP’s Executive Director has to say about Wisconsin’s Paul Ryan’s budget proposal:

“Rep. Paul Ryan of Wisconsin, Chairman of the House Budget Committee, has made a budget proposal that, if enacted, would have a dramatic impact on long-term care for individuals with disabilities. Regardless of where you stand on the political spectrum, you need to be aware of the implications of the Ryan proposal for people with disabilities.

According to the Arc, [another key disability advocacy group Susan’s readers should consider supporting] three key elements would be:

* An $810 billion cut in Medicaid over 10 years (a 33% cut);

* Medicaid would be converted to a block grant to the states;

* All “dual eligibles” would be placed entirely in the Medicare program.

Let’s look at the implications of this to the best of my understanding.

* The elderly and individuals with disabilities represent 25% of Medicaid beneficiaries, but represent 2/3 of Medicaid spending. A 33% cut to the Medicaid budget would disproportionately affect individuals with disabilities.

[Ryan’s cut would have deleterious effects on guys like Nat.]

“* Block granting Medicaid would eliminate the individual entitlement to Medicaid. Translated into everyday life, it would remove the right to receive PCA services, Adult Foster Care and Group Adult Foster Care. These services are currently the only source of long-term services and supports for individuals not served through DDS (aside from SSI and Sec. 8), and are also used by individuals receiving DDS supports other than group homes and shared living. It is worth remembering at this point that only about 25% of individuals served by DDS receive group home or shared living supports at age 22.

* Dual eligibles are individuals eligible for both Medicaid and Medicare. When a parent of an adult with a disability receiving SSI retires, dies or becomes disabled, the adult with a disability will (after a certain waiting period) become a dual eligible. If dual eligibles are moved exclusively onto Medicare, they will lose all eligibility for PCA services, Adult Foster Care and Group Adult Foster Care. In addition, the cost to the state of Mass. of individuals on the Medicaid waiver residing in group homes who become dual eligibles would double, as Medicaid pays half the cost of such placements.”

Cathy Boyle

—
Autism Housing Pathways: Building Roads to Home
http://www.autismhousingpathways.net

I don’t often write this kind of post, but the Autism Science Foundation is worth it. The ASF formed a few years ago, from scientists that used to work for NAAR (National Association of Autism Research) way back in the 1980’s and ’90’s. NAAR was founded by extraordinary autism parents Karen and Eric London. Eric and Karen spoke to me about their experiences raising their autistic son, when I first put together Making Peace With Autism. They were kind enough to read my manuscript and endorse it.

What I like about ASF is their emphasis on science that is hard as steel. They’ve got some impressive people on the board: Seth Mnookin, as well as Emanuel DiCicco Bloom, a lovely scientist whom I met on a panel reviewing autism research grants awarded by Congress and the military (CDMRP). That guy really, really listened. I trust these people and I truly admire what they are doing to help us better understand autism and creating bridges between autistics and neurotypicals.

ASF is doing a fundraiser this month, Send a Thank-You Note to A Special Doctor. Here is the text for the fundraiser:

Doctors care for us in our time of need. They work nights, weekends and holidays. They spend years preparing for careers of service and healing. Their focus is on you and your family.

Say “thank you” to the remarkable doctors in your life and show them how much you value their commitment to your family’s good health. Make a donation in their honor on National Doctors’ Day to express your gratitude.

For over twenty years, National Doctors’ Day has been observed on March 30. It is a day that offers us all an opportunity to express our admiration and appreciation to those who improve our lives and the lives of our children through clinical practice and research.

Make a donation today in honor of the many wonderful doctors in your family’s life. With each $15 donation to ASF, we’ll deliver a card to the doctors you have honored. Thank your child’s pediatrician, your own internist, your OB/GYN, all of the physicians who touch your life, and show them you care by donating to autism research and education in their honor. The cards are suitable for autism related physicians as well as those in other areas of practice.

Every doctor will appreciate a donation made in their name to support medical research. And your charitable gift will go directly to support our autism research programs to help develop new treatments for children, teens and adults with autism.

In 1993 when Nat was first diagnosed with Pervasive Developmental Disorder, (PDD) under the “Autism Umbrella,” I asked the doctor what do you do about that, what is the treatment?

“Education,” he replied. He went on to tell me that no one really knew which approach was best, and that there were many schools of thought. “It is up to you to observe and figure out what works for Nat. When something is right for him, you’ll know,” he continued enigmatically.

But I envisioned Nat at school — though back then I could barely picture that, he seemed so little and vulnerable — and this advice seemed wrong.  He needed me, not school, I remember feeling. He would be bewildered by school. Lost. But the doctor was saying that he should actually be in school for as many hours as possible (No one said “at least 30-40 hours a week of intensive one-on-one education. If he had, I would have resisted it.). I did not believe school would work for Nat.

As pre-historic and simplistic as his diagnosis and advice were, the doctor, bless him, was completely right. School, education, a teaching environment has made the greatest difference in Nat’s life. Even when he was in programs that were not the best, he progressed, he did what he could. And when he participated in programs that were right for him, he took off. (Please do not read this as a paean to ABA, just because that was Nat’s best school program. I am not convinced it was the ABA per se that did anything for Nat; more likely it was the one-on-one attention and repetition, and very kind teachers, that did the job for him.) And no, he did not take a rocket ship to Normal. He did not de-Auticize (my favorite term, coined by artist, autism mom, and dear friend NancyBea Miller.) Nat maintains his diagnosis — or one of them, they’ve changed a lot over time, but Nat remains basically pretty deeply involved with autism, PDIA (my own jargon, feel free to use it and make up your own, more accurate versions).

Nat’s education helped him in so many ways. He learned the importance of paying attention to others, of trying to communicate. He learned all the basics: letters, numbers, shapes, reading, writing, typing… And then when he was 14 we had a conversation with the school that made my heart hurt: they asked us to start shifting him out of academics and into “pragmatics.”

This hurt, but it was hands down the best decision we ever made for Nat so far. Why did it hurt? It hurt my own vanity, to realize once again that this child of mine was not [you fill it in]. He was not going to learn history, chemistry, algebra, or read books at his grade level. He was going the vocational track. He was going to have to focus on what I thought of as the Dull Kind of Adult Life. He was going to have to learn ugly things like food preparation, laundry, house cleaning, street safety, community behavior & appropriateness. No Latin for Nat. Essentially, nothing I could brag about to anyone. Learning Activities of Daily Living, ADLs, and training in basic job skills like serving meals or making boxes — who in my world did that? Who in my family of doctors, lawyers, educators? My Harvard Medical School Dean neighbor?

I emphasize this ugly shame I felt to illustrate that it was all about my own vanity. That and the death of certain hopes that I had/have for my children, and why not? I belong to a social class that believes in the American Dream, of working your ass off and educating yourself to reach the pinnacles of what the world has to offer.  In my world, it is not just a given that you do college, you also have to go to graduate school. You choose a career that hopefully helps the world in some way. You live in an area where they have the best public schools (you never do private because you believe that social programs and public sector investment are what make the US great), you have children and you pass on the same values to them.

So what happens if your child does not fit that mold? Well, in my case, once I got over the fact that there was only one way to view success — which began with an Ivy League education — my world broke wide open and beautiful things spilled out, like a treasure chest. I laid my eyes on the most spectacular thing of all: Nat was really learning and using what he was taught. Nat could generalize those new skills, too. He learned how to do laundry there, and so he could do it here (with assistance). He was used to cleaning, shopping, making lists, keeping himself safe and healthy, because that is what he learned in school. His mind was not wasted; it was ignited. Suddenly everything made sense to him; everything had real-world application, and for a guy who craves context, that was just perfect for him.

Thus Nat — still PDIA — made the leap to living outside of our home, and to working out in the world with hardly a ripple. Do you realize how marvelous that is, a guy with as many challenges as Nat has — (yes, he has often been officially termed “low functioning,” and “severe.” Even by me, sigh.)?  It is nothing short of the American Dream.

If you open your mind, your definition of education to fit the full spectrum of human beings, then ADLs and job training are truly valid forms of schooling. I believe that all children would benefit from this shift in perspective and approach. Sure, the classics matter. Of course most academics still do matter. But, in addition to that, we must train our children to live in the world. All children, whether diagnosed or not, should be trained in social competence, independent living, and vocations. Education is and always was the way out of darkness.

Ben’s reading Of Mice and Men and he looks like he’s near tears. “Poor bastard,” he said, about Lenny killing the puppies and then the young woman. Ben knows that Lenny was a victim of his time, back when a “simpleton” was nothing but that, and if he had no family to care for him, he was left to the elements. Steinbeck’s story is not a retelling of actual events, but it is certainly real.

Recently I had one of those arguments on Facebook with a “friend” who objected to one of my pleas to save Medicaid, and the programs that spring from those funds. “Why can’t their families take care of their own?” he asked. “I’d never want to be a burden on society.”

Who does? Even if you know one or two who live on “handouts,” you have to know that the bulk of us do not want to. Most people are good. Most people want to lead meaningful lives. Most want to work and to feel useful. But what if you can’t without help?  Throughout history families were indeed the ones — the sole people — to take care of their intellectually disabled relative.  Some families did this and do this admirably. Many of us do. We are the ones who love our family members the most, so it is only natural that we should be the ones to invest the love, energy, time, and money in them! Of course!

But what about the family who can’t? Where do they turn? Neighbors? Church? Synagogue? Maybe. But what if they don’t belong? What if they don’t get along? What if their church is poor and can’t help? Do we just say “tough shit?” And as society becomes more complex, with families split all over the world working where the jobs are, how do families “simply” help their own? If they are working several jobs to pay for our expensive way of life, with their attention absorbed by the demands of those jobs along with all the other things competing for our attention — how do they manage alone the gigantic set of problems brought by a multi-layered disorder like autism?

Let’s suppose life were more simple and straightforward Back Then, whenever that was. Girls were girls and men were men. Women didn’t work outside of the home so they could take care of the children, whatever their issues were. There were enough jobs to go around because we didn’t have so many immigrants or women competing for jobs or minorities given a chance.

Uh huh. Okay, let’s take the Rick Santorum message even further. Maybe we had more stability in the family and in the economy — but at what cost?  Stratified society, minorities as second class citizens, women kept from the workplace…

To tell you the truth, I don’t think life was ever simple and straightforward, even if the pervasive beliefs were:  Take care of your own, don’t expect a handout, God helps those who help themselves. And people suffered. We just didn’t hear as much about it without the Internet and news feeds. We had guys like Lenny, whom the schools were not required to educate. For whom there was no social worker or Welfare agency. No Department of Developmental Services to help him find a program where he could at least be safe. We had guys like Lenny and guys like George, way over his head, unable to meet Lenny’s extraordinary needs. Putting an end to Lenny’s life because it was just too hard.

We had guys like Nat, maybe lucky enough to live home with their moms and dads until a sibling could take them in. If that family operated at the highest functioning levels of supporting each other. If. Or maybe the Nats of the world were simply put into an institution to live a life wandering and staring at walls.

Now that we know what we know about human potential, there is no going back.  We need our social programs. Maybe you don’t, because you have your special family or a really unique, caring town. You have, perhaps, just the right kind of church. Maybe the shopkeeper down the street really gets your kid, and so he has no need of a job coach.

You are in the tiniest minority.

Most of us live far more disorganized, hectic, troubled lives than that. Our world was never simple, but it is so intricately complicated now because we’ve made it that way. We humans have evolved into the Technological Age, the Age of (Too Much) Information. So we need solutions that match the complexity of the people we’ve become. That’s why we can’t turn back the clock to those Good Ole Days when family took care of their own and didn’t ask for a handout. Because if we pay close attention to those Simpler Times, we will find that nothing was simple and in fact people suffered, languished, wasted away.

We know more now, and so the price of our knowledge is that we have more responsibility.  Or is your solution like George’s, simplistic and desperate — and deadly?

Today I received the following important notice from Massachusetts Advocates for Children (MAC), for parents of children on the autism spectrum ages 0-9. There are some tremendous resources available in early April under the Medicaid Waiver program! Please check it out, regardless of your income. I think — I could be wrong — that this is about diagnosis, not income-based.  Check it out yourself with the DDS, the phone number is below.

The Autism Division of the Department of Developmental Services (DDS) is launching an open enrollment period for the Children’s Autism Medicaid Waiver April 2 – April 14.

Please help us contact parents of children with ASD ages 0-9, as well as school districts, service providers, community organizations, educators, medical professionals and others that can help get the word out to families about this opportunity.

A Message from the Autism Division of the Department of Developmental Services (DDS)
PARENTS WITH CHILDREN WITH ASD AGES 0-9

Open Enrollment for the Children’s
Autism Waiver Program
April 2, 2012 through April 14, 2012

WHO SHOULD APPLY?

1) Parents who have children on the autism spectrum 0-9 years old

2) Parents who think intensive services are needed to support their child with autism spectrum disorder in the home and community (ABA, floor time, as well as respite and other services)
The Autism Waiver program offers $25,000/year of services for each child selected.

3) Parents who think they might be eligible for MassHealth

* Applications for the Autism Waiver Program must be postmarked between April 2 – April 14.  Applications with postmarks before April 2nd or after April 14 will be discarded.

* Even if you applied before during the enrollment period last year, you must apply again between April 2-April 14 to remain eligible for Autism Waiver services.

Additional Information about this Waiver Program is available on the DEPARTMENT OF DEVELOPMENTAL SERVICES Website at: www.mass.gov/DDS under ‘Autism Spectrum Services’ or contact 1-888-367-4435.

Information is also available through the Autism Support Centers listed below.

Listing of the Autism Support Centers:

HMEA: Autism Resource Center
71 Sterling Street, West Boylston, MA 01583
#508-835-4278: Serving Central, MA

*********
ACL: Community Resources for People with Autism (CRPA)
116 Pleasant St. Easthampton, MA 01027
#413-529-2428: Serving Western, MA

**********
Community Autism Resources (CAR)
33 James Reynolds Rd, Unit C, Swansea, MA 02777
#508-379-0371: Serving Southeastern, MA

**********
TILL, Inc.: Autism Support Center
20 Eastbrook Rd. Dedham, MA 02026
#781-302-4600 x 4661: Serving Greater Boston

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SNCARC: The Family Autism Center
789 Clapboardtree Street, Westwood, MA 02090
#781-762-4001, X. 395: Serving Norfolk County Area

***********
NEARC: The Autism Support Center
6 Southside Road, Danvers, MA 01923
#978-777-9135: Serving Northeastern, MA

**********
Advocates: Autism Alliance of MetroWest (AAMW)
14 Central Street, Natick, MA 01760
#508-652-9900: Serving Metro West of Boston

Sometime last year I was having an argument with Max, it must have been about some group or another that was slowly but surely eroding our rights. I think I was talking about the creation of Homeland Security, and the laws that allow for government to use their discretion about spying on people. Spying is okay, then suppression of the First Amendment, then suspend Habeus Corpus…”It’s a slippery slope,” I probably said. “That’s what happened in Nuremberg. From Jews having to wear yellow stars to Jews being denied the right to education to Kristallnacht.”

Max said, “As soon as you compare anything to the Holocaust, you automatically lose the argument.” This made me laugh because I realized that I often do that. I remember likening the standardized-testing movement in education to the beginnings of Nazism. People often want to do that, but we are somehow reluctant to pull out this pivotal example, this epitome of evil that many of us see as unique to history. Of course before and since 1939 Germany and Poland there have been similar holocaust-like horrific events in other countries (Bosnia and Sudan, for example) but to me, a Jew, there was something particularly focused and obsessively carried out about The Holocaust that tops ’em all.

But Max was being light, and pulling some kind of meme-like knowledge out for me, to show me the latest Internet-hip thinking. (I love when he does that.) I wish Max had been around in the 1960’s when Bruno Bettelheim worked his black magic on society and likened autistics to concentration camp victims. And everyone jumped aboard that train without a peep.

I thought of that today because I heard Eustacia Cutler (Temple Grandin’s mother) speak at Advocates in Framingham. Advocates is Nat’s service provider, and the Eustacia Cutler event was just one item out of many that demonstrates their prowess in the field of family advocacy. Anyway, I listened to Cutler and my own synapses were sparking a mile a minute.

Cutler said that because man is a social animal, we are linked to others, we are linked to what they do. Response is validation and it is mutual; therein lies connection. And so, she reasoned, when we interact with our autistic child in our earliest, most clueless days “we are not getting the response we’re used to. We, too, have lost our way.” What she was talking about was that our autistic child’s unexpected or lack of response to us is not just an occurrence that is about them and their inabilties; this is a dynamic, that is now also about us and our inability. We both become lost to the world, in a sense.

The good news, though, is that as Cutler put it, “We are born with an open skull. Our brains grow.” Even genes are “not fixed;” they are susceptible to “external instruction.” She also theorized that “our brains make new circuits when introduced to someone/something. BUT if you are afraid, the new circuits do not happen and in fact you reinforce old points of view.”

Hearing this, one might think she was referring to autism as a rigidity based in fear. But her statement also made me think about certain neurotypicals as the rigid, afraid ones. There were countless times when I felt afraid of Nat, thinking more about what he might do to me (in terms of hurting me, scratching, pinching, etc.) than about how he was my darling son whom I’m here to help. Those were the times when I would be rewarded by the scratching and pinching. My circuits were fixed from my fear, so new information was not lighting me up. I was seeing Nat in the same old, scary way, so he never had a chance.

This dynamic, however, is a far cry from it being my fault that things between Nat and me shut down. The Holocaust was a deadly environment, that was not about inmates being misunderstood by loving captors. Autistic children are not, were not, inmates. That is a mistake so many make, that autistics are “trapped” in their own world. When what is trapped is a communication between people. It isn’t the fault of the kid, which is kind of what many say nowadays when they want to squeeze the autism out of a person and make him normal. And it isn’t the fault of the mother/father, which is what they used to say and what they say nowadays when they say we are bad parents, when they stare smugly.

It is an utter waste of human brilliance and potential to go back and forth about fault and blame. The truest thing Cutler said today was that it should all be about fulfillment. No one is cured, but they can be fulfilled, she said.

In likening the autism family home to the evil, hellish environment of Dachau, Bettelheim automatically lost the argument. It took Rimland, Bauman, Grandin, Cutler and you and me to find a way to win it.

When Nat was 10, during a terrible time in his life, some good things happened, too. We met S and his family, and we started going to Special Olympics gymnastics. S was one of the boys on the team. “Team” is used very loosely here, by the way; these boys were all autistic and all bouncing off the walls. But Jocelyn, the coach, whipped them into shape — with the parents’ help.

By the time they’re 10, kids with profound autism — like Nat and S — have really conditioned their moms. S’s mom (L) brought visual aids to that coach. I sat the coach down and told her to keep it simple and repetitive. “Don’t teach them new stuff each time,” I said. Other moms and dads lent their expertise. And that is how the coach got these boys to the point where they won gold medals that summer, which in some ways had also been the blackest time of my life.

Parents of autistic kids are often a special breed. I’m not saying we’re better or anything. I just know that we have learned how to man up and do what we have to do. Sure, we want to get to the bottom of why our kid is smearing feces; but we are also the ones who have to clean it up. When you have children, you are humbled immediately by the fact that you are sometimes literally up to your wrists in shit.

So many autism moms I know started out like me, blinking in confusion and grief at first, that life had not gone according to the Plan. Then we  slowly climbed out of the pit and started dealing with it. Learning about these unusual children of ours. Loving them with a ferocity born out of a fear for them. A protective love that knows no bounds. These moms first became thick-skinned from dealing with the school system or insensitive or clueless doctors, from being stared at in the checkout line, from being told it is their fault. But then something breathtaking happens. These parents start to move beyond thick skin and competence: they become what they were once looking for.

I gave a talk tonight at an organization that was co-founded by S’s mom. That’s what autism moms do: they find more energy, always, out of nowhere. We aren’t only PTO chairs; we start non-profits. We sue major city school systems — and win. We deal with shit others never dream of: the shit of not understanding the child we love.  And I truly believe that out of that crucible we are forged into the strongest people on the planet.

There were tons of people in that library room tonight, and their kids were next door with a therapist who was teaching them community skills. Not just childcare: skill-building. That is how my friend is. No wasted moments! Everyone, every child felt welcome and understood. What would I have given to have had that kind of group when Nat was three! And now, there was my friend leading the group, introducing me and my books, and parents all around the room nodding their heads about what I was saying. That connection never grows stale for me.

And of course, the biggest connection of all:  our sons. When S saw me tonight, he started singing the Zorro song. His mom pointed out to me that’s because seeing me reminded S of Nat, who is always Zorro for Halloween. My heart flipped over when I realized that S had noticed me.

S and Nat are also in the same day program now. What must that be like, his mom L and I wonder, laughing. That kind of laughing is so familiar, the glee shared by two autism parents. Laughing with yashtikas, it’s called in Yiddish, literally “laughing with pins.” It’s the laughter of surviving and loving all the more for it.

I learned tonight from her that the two guys actually share a job coach at the CVS where they work. That they have a kind of competition, where they eye each other putting the soda bottles into the coolers. What is going on with those two?  Is it a bro kind of thing? L and I laugh and laugh because we are beyond thrilled about where our sons have gotten to. Sure, we had a hand in it, as did their dads, their teachers, therapists, etc. But our sons have gotten to this point where they are no longer simply “appropriate peers” for each other. These guys are coworkers. They know each other’s families. They really know each other. They get on each other’s nerves.

They’re friends.

Today I was interviewed by WGBH/WCAI’s Mindy Todd on “The Point.” We talked about my new novel, Dirt: a story about gardening, mothering and other messy business, as well as other autistic characters in the media today, and the struggle of autism families. I also gave her a little update on Nat and his new group home, and how person-centered-planning is the wave of the future for the wave of autistic people aging out of the schools.

Listen:

You can also click here for the audio of my interview.

Knowing many, loving none

Bearing sorrow, having fun

But back home he’ll always run. — Greg Allman, “Melissa”

Your child is always your child; that is true. But when your child is no longer a child, things change. We all know that. But do we?

I was riding my bike today, a glorious ride, so happy, warm, just right.  Well, that song came on: Melissa. I’ve kept it on the shuffle because it had ceased to make me cry. It’s just a pretty song, with a little bit of great Duane Allman guitar in it. But as I rounded that corner and spilled down that gentle hill, those words got in. And just like that, my ride shifted into thunderheads. I actually had to stop, and hide next to some tall shrubs, and cry.

It was the part about knowing many, loving none. My mind jumped to Nat, standing off to the side, watching everyone the way he does. He stands there, thin and big-eyed, taking it all in. Now, I’m not saying that the song is literally true: knowing many, loving none. I know that Nat loves people, me in particular. But the thought that popped into my head was that Nat doesn’t love anyone — in the physical sense. Sexual, adult love.

Is this inappropriate for me, his mother, to be thinking about? God damnit, I don’t care. I want Nat to have as full a life as he wants. If we are to presume competence, we must also presume whole humanness. How dare we assume that it’s not there, just because it is kept quietly within?

It is very likely that Nat wants some kind of love, that even without knowing the words or the why’s, he probably wants some kind of sex. And that’s when it crystallized: Nat is a man. Nat is a full grown man.

And yet we, many of us, call him “Natty Boy,” and say, “Good Boy,” to him, and many of us treat him more like a teen, with the high-five kind of stuff, the “buddy,” kind of talk. But how does he feel inside, knowing he is a man? Does he feel discouraged, day in and day out, knowing he is not seen that way? Even if it is just on a feeling, not a verbal, level, how must that feel to him, to be so trivialized?

Nat is a man, like Max is a man. Like Ned is a man. Nat stands off to the side, sucking his thumb, eyes wide and blue like a Disney elf. His language, his words are young, childlike. He refers to himself as “Nat,” and “you.” These errors are poignant, and cute. Why is it cute? Because he sounds like a little boy when he talks. And he  has a slight build. He still has those lovely, innocent features not hardened by cynicism or subtlety, so he can still look a lot younger than he is.

And he was my baby. I look at my sons and in a flash their baby selves are super-imposed on their delicate newly adult faces, a double exposure in my mind. As their mother I am especially prone to remembering their younger selves and connecting them to their current selves, and feeling all proud and moved and tender.

But I am so careful with Max, and now Ben. I can tell what I’m supposed to keep to myself, and what I can express. Sometimes I overstep with Benj because he’s only 13 and there is still so much of the dear boy in him, the moody passionate tween, the “angry babby,” as the Scottish painter called him years ago. With Max, though, I feel like I can only dole out the hugs because he projects a certain distance. His eyes hide more than they reveal, even though they are still curly and twinkly like when he was a tot.

So I knew I had to get home and do something about what I’d discovered. I tried to stop crying and got back on my bike, thinking how glad I was that Ned is back home from California. But I really wanted to talk to Landon, because he often talks about being an autistic son, and what that has meant to him. He has a keen sense of parenting, even though he doesn’t have children.

I heard back from him almost immediately. “Be gentle with yourself,” he said. He did not offer advice on how I can be different in the future, except to say that Nat indeed is a man, albeit one who needs to be protected and who sucks his thumb.

And then Landon sent me this:

And I just wanted to share it with as many people I can, because it is unfortunately easy to forget.

I picked up Nat for Special Olympics State Games this morning and I noticed he had a red mark on his cheek. His caregiver thinks it happened from shaving, and so do I. She likes him to shave much more often than we did; Ned and I are terrible with that kind of grooming. It comes from years of choosing our battles, when so much having to do with Nat was hard, and so it felt like stuff like brushing hair could take a backseat. Toothbrushing is cursory, shaving is spotty, flossing — forget it. Yes, that’s right. I’m not proud of it, but something had to give sometimes. I do doctors, dentists, and group homes but I just can’t do everything.

That’s why I didn’t do The Diet for Nat. I tried, but totally half-assed, like for a day. I never did Auditory Integrated Training, either, or neurofeedback, or, God forbid, chelation.  Nat did take iron for a long time because his lead level once measured just a tiny bit higher than acceptable. But this was the traditional, long-approved medical treatment for lead, overseen by his pediatrician. Nat called it “irion,” and he said it smiling, because he could sense my tension around it — my guilt that he had to have it. Vile stuff, mixed into his juice.

Sometimes people still tell me about stuff that makes The Symptoms go away — the most recent thing I heard of was a particular parasite, a good one, that produces something that does something. I’m not being flippant. I am lazy and skeptical and tired. And guilty. I really didn’t try many therapies for Nat because it seemed like what if you did it and did it and did it and nothing happened anyway? You contort yourself for The Diet and then it yields nothing but nebulous, subtle stuff.  You get all the charts set up for your Home ABA and you follow through exactly one day. After that, it’s one big slide back into I can’t take data I’m just trying to live my life.

So what I have always done are bastardized versions of everything. I am the queen of The Half-Assed. I would do ABA only in a natural way like showing him the reward a few times a day so that he would be reminded at times when he was not doing the undesirable thing. In our case the undesirable was destroying stuff or hurting us.  The idea was to catch him at being good, and reward those moments. Do you know how difficult it is to try to find a moment when you’re not pissed off at your difficult child so that you can genuinely compliment him? But it worked — or maybe it didn’t. How the hell do I know why things got better? Maybe he just evolved out of it. For the longest time I credited his meds with damping down some of his excess energy that led to mischief/trouble. More and more I see his meds as part of the problem. I want to wean him off the stuff, but it’s hard to be systematic and harder to be courageous because there’s always the fear that aggression will return.

Those who judge autism parents feel that we should devote our entire lives to figuring things out, like why the aggression occurs — and we should, of course — and not simply medicate, or de-glutenize or ABA-ify. Yes! Of course. But how can anyone know when we can be done trying? Why, for instance, does Nat not use his iPad? Is it because as always Ned and I are not systematic enough, too half-assed about taking it out and showing him stuff? Or is it because we just know that he is not interested in it. That for Nat it is not exactly about inability to communicate; it is more about a lack of desire to. And sure, we can expose him to it constantly, make a true concerted effort, and then maybe eventually he will be so familiar with it that he will use it. So why don’t I do it? Do I have some kind of sick desire to keep him disabled?

Of course not. But do I have some kind of sick desire to have free time and also to let him be? Yes. But if I were not so selfish, would he be like my friend Tammy’s daughter Carly? I don’t think so. I think Carly wanted to talk. I think that Nat either doesn’t or it is just too complicated for him, and he knows that. Sometimes I believe, or feel, that Nat does not always want to be in the down position with people, the one who’s less capable. And talking puts him at a disadvantage. All the nuances, the noise, the expressions, the damn eyes. I feel this. He, like all of us, wants to be great at stuff, even if he doesn’t quite know it, and so I think he just pulls away from talking. I think he likes having his own language that he can control. With his self-talk, he can let me know what he’s thinking about sometimes if he chooses and other times he can guard it, or say, “NOOoo, Mommy will go away” when I try to guess.

So, I don’t know, I kept looking at that red mark on his face and feeling bad. One more thing that I can’t figure out, one more thing he can’t tell me. The caregiver didn’t seem to really know why it was like that. I know she cares, but she didn’t know why it was red. This has happened his whole life; school people telling me they don’t know why this or that happened. “Out of the blue,” was the phrase I hated the most in regard to Nat.  But really, how much effort is anyone, teacher or parent, supposed to put into this?

I had Nat come upstairs after dinner. I told him I’d get a warm washcloth, and he’d sit with that on his face. “Sit on the toilet while I heat it up, Sweetheart,” I said. So, being my literal Nat, he started to unbuckle his pants and to lower himself onto the toilet — just because I had told him to sit on it!! Oh, Nat. We still have so much ground to cover here. “No, Darling, I mean, just close the lid, use it as a chair.” I laughed a little, because you have to take it where you find it.

I know I could have given him the cloth to hold on his face, but I stood there and held it for him. The little bathroom was suddenly a quiet white space.  I looked down at his wild, unbrushed hair, and I simply mothered him.

Nat has a job interview tomorrow, for a position of putting away shopping carts in a parking lot at a supermarket. I keep thinking about what that would be like; what is an interview like if the person is not comfortable with speaking, or with open-ended questions? And what about the psychology test that is part of this particular interview? What the…?

I got to thinking, what would Nat’s resume look like? I know the people who work with him have probably put one together, but I was thinking more like what would Nat’s resume say about him as a whole person, not only tasks he can accomplish?  Here’s what I would write for him. I think it is a rewarding and satisfying experience writing up one’s resume, thinking about what one has done in concrete categories. You get to see a pattern of what you do when you take on a job — what you do well.

If we all sat down and wrote up our autistic child’s resume, thinking hard about achievements, special skills, talents, and interests, we might see our child in a new light. And later in life, this kind of list may help our child figure out what he could do with his life, and what he’s already done to be proud of.

Nathaniel Isaac Batchelder

Objective:  To work at a job with at least one well-defined task, preferably having to do with organizing and storing.

Education: May Center, Randolph, Massachusetts. Graduated 2011 with distinction.

Experience

November 2011 – Present: Stockperson, CVS Drugstore. Duties involve stocking all coolers with drinks, keeping area clean of spills.

2009 – 2011: Coupon Messenger and Package Assembler, Papa Gino’s Pizza. Responsible for disseminating advertisement flyers throughout local neighborhood. Also in charge of assembling large volumes of pizza and entree boxes and stacking them up when finished. Worked with very few breaks.

2007-2011: Delivery, Office, and Cafeteria Assistant, May Center. Multiple responsibilities include carrying messages from school to corporate employees; entering data into PCs; taking snack orders for classrooms, assembling orders, and delivering to the classrooms; setting up and wiping down counters and tables before and after lunch.  Took joy in completion of all tasks.

2006-2007: Delivery Assistant, Meals on Wheels. Responsible for carrying meal trays into homes of elderly and disabled. Friendly and professional demeanor maintained at all times.

Other Relevant Experience: Sorting, washing, and folding laundry; partial vacuuming; emptying and loading dishwasher; raking leaves; entry-level lawnmowing; baking (breaking eggs, using mixer, setting temperature, greasing pan, measuring, putting ingredients away, using oven mitts to remove hot things). Any lifting, carrying, gathering. Willing and able to bring anyone anything.

Other Interests and Skills: Walking fast, biking, basketball, swimming. Keeping track of schedules, ascertaining arrival and departure of those in the home, keeping track of the location of items, putting everything away, letting people know what is wrong or needed with a modicum of language. Creating singlehandedly an original language to keep my thoughts private from others. Remaining calm under pressure.

References Available Upon Request, from practically anyone I have ever met.

I have an essay at MariaShriver.com, below, on behalf of End-the-Word Day on March 7:

Spread the Word to End the Word: It All Starts With Us

By Susan Senator

It’s nice to know that after over 27 years of marriage, my husband still has the power to surprise me.

Ned is in many ways my complete opposite, a math guy, science type, non-talker. Refers to himself as a nerd. I, on the other hand, inhabit entirely the right side of my brain.

I talk enough for the two of us — and probably for our three sons as well. I have to admit that I have often felt like talking things out is simply not a guy thing.

Don’t get me wrong; Ned is as quietly passionate about our life and sons as I am noisy and exuberant. Our family system works very well. Ned and I often “divide and conquer,” for instance, when it comes to raising our sons.

Our oldest son Nat has autism and some pretty challenging intellectual disabilities, and he is the one who taught us first how to be parents. But of course, we have evolved some pretty different roles when it comes to the boys, and especially Nat.

I do most of the “talking” parental tasks: dealing with schools, doctors, therapists; going to the support groups; pulling together a group of families to create Nat’s current group home. Ned, on the other hand, does the “action” tasks.

He is the one who takes Nat out on walks in the community, and showed him how to cross at the light. He’s the one who drove him to his first day of school, and just waited outside the classroom half the morning to be sure everything was okay. And Ned is the one who has taken Nat to countless Special Olympics practices, waded with him in cold swimming pools and threw basketballs to him in cavernous gyms.

He is there for his sons as much as I am. He just lets me do all the talking and emoting.

So the other day when Ned seemed visibly upset about something, I snapped to attention. He told me he’d just gotten into an argument online with a guy in his favorite computer nerd chat room. “About the word ‘retarded,'” Ned said. Somebody had described some technical thing that way. He’d pushed back, to no avail.

He flipped open his laptop and showed me the actual transcript of the conversation in this chat room, with someone whom I’ll call “Other Guy.” I have edited it for clarity:

Other Guy: What’s wrong with the word retarded?
Ned: I don’t appreciate it being used as humor. I don’t find disability funny.
Other Guy: My bro has down syndrome, if I’m not offended by a WORD then why are you guys?
Ned: How does your bro feel in the school cafeteria when a bunch of kids calls someone retarded, and laughs?
Other Guy: Have you ever met someone with down syndrome? they’re the coolest mofos ever, i really don’t think he’d care.
Ned: I was in the pool today with my son and the rest of the local Special Olympics swimming team. I don’t mean to get into a competition with you about disability cred. It looks like we just disagree about this word…I know, the word has become a habit, and people use it without thinking…We should just drop this. I don’t think we’ll see eye-to-eye.

Ned looked so frustrated, really disappointed. I came over and gave him a hug. “I’m really so proud of you for speaking up, though,” I said.

I knew how he felt; I call people on it from time-to-time and there is always that sweaty moment I have when it seems like the other person is going to laugh at me or worse.

But the next morning, Ned came over to me with his laptop open and said in that matter-of-fact tone of his: “Want to see something good?”

“Sure!” I said. I peered at his screen, and there I saw this continuation of the other day’s r-word conversation:

Other Guy: Hey, sorry about the other day
Ned: What happened the other day? (I talk to a lot of people here)
Other Guy: We were arguing about words
Ned: Oh, “retard”?
Other Guy: Yes. I can see where you’re coming from
Ned: You have the brother?
Other Guy: yup
Ned: I really do think no one means anything by it, but once they start thinking about it, they feel differently. Thanks for checking in. Is your brother into sports? If so, special olympics really can be great
Other Guy: He likes swimming and dancing
Ned: Sounds like my son! 🙂 You made me happy, thanks.
Other Guy: I dunno how, but you’re welcome! 🙂

I could go on and on about how we all should do this, how we can change the world, one person at a time, and how we gotta stand up for what’s right… but take it from someone in love with a computer nerd: sometimes just a few words are really all that’s needed.

Way back when Nat was 3, and he got his diagnosis of “Expressive Language Disorder with Autistic-Like Symptoms,” I was filled with fear because it felt like people were talking to me in Newspeak, a la 1984.

Because there I was with my perhaps-Spectrum-like antennae, and it felt like people were lying to me, but in soft cottony whispers that stuffed up my ears. This situation made me live inside my head. Kind of the way it feels when you sleep with ear plugs; a slightly achy headcold-ish feeling.

You’d think it would be all relief and also “now what?” that I felt back then, but there was also a big feeling like we still hadn’t gotten to all of The Truth About Nat. During those days, when I was just 30, I was so unhappy, but one huge truth is that it didn’t have to do with Nat. I was suffering from OCD, which shamed me so much because those behaviors were inexplicably irrational to me but I couldn’t stop.

I worked so hard to overcome that, and I did. But one thing I do remember is that my OCD was one of the first things that informed me about Nat. I couldn’t help but notice the way he would repeat things, over and over, from walking in little circuits (which we now know to be called Joyful House Stompies, or JHS) to reciting his books, the same sections, repeatedly in his little jingle bells voice.  Oh how cute, delicious, beautiful! And now gone, forever. But back then I lived under such a shroud of shame — for weird me and weird Nat — that I know that the sheer loveliness of Nat and those days were somewhat lost to me.

Thank goodness we learn to channel. My mushy helplessness hardened into a defensive passion for Nat. When we took Nat to Dr. Bauman and finally heard the word: Autism, I was no longer numb and dumb. Autism was true, autism was right. I was no longer being lied to.

And yet I still wasn’t satisfied that this, indeed, was Nat. I remember going on and on to my Dad, especially on those particularly golden days when Nat burst out with something that showed me all that truly was going on inside him. The little teasing hints of color, like you get with the March crocuses, a flash of brilliant purple nearly invisible against the mat of muddy leaves.

“They’re wrong,” I’d say to Dad. “I know they’re wrong. That is not who he is.” And because I did not understand the complex nature of autism — how it isn’t about inferiority or brokenness,  rather, it is only about taking in and processing everything differently from the norm — I fought that designation.  “Actually, I think he’s not autistic at all. He’s gifted.”

My Dad, in his unflagging confidence and total delight with Nat, said: “You’re going to find he’s gifted.”

For years after that, I thought of those words, and choked a little on them. Gifted, right, I’d think to myself. Oh, Dad. For Nat was deeply and thoroughly autistic, and to me, the worst had come true: very little verbal communication, much ugly stimming that was all too much like my beastly OCD, the emergence of nasty aggression, and fighting everything we wanted him to learn!

Except there would still be those glimpses of spring, those moments that took my breath away and thawed my scared, frozen heart. Like when he told his first joke. Pointing at me, saying, “It’s Daddy! Yes!” grinning ear-to-ear. Or when he started talking to us about his fascination with danger: “Nat will jump off the building and head will bleed and bleed.” Or when he got his first medal in Special Olympics.

During all that time, and before, and since, Nat was just being Nat, which doesn’t really need anything more than that, but I allowed my ignorance to darken that sky. Well, as Bob Dylan said, “I was so much older then; I’m younger than that now.”

What do I know, that has led me to this youthful appreciation of my extremely quiet and incredibly elusive darling son? I know the simple Truth: Nat is Nat. Nat is autistic, and Nat is gifted. And the proof does not come with a diagnosis or some kind of acronymed, hyphenated test. The Truth About Nat is before me, everyday, all around me, in his living, breathing, personhood. In living color, not just small bursts, because now I see him.

So when Ned came back with him from Special O swim practice this morning, and told me that at the end, Jen had gathered all the team in a bunch and said, “Okay, so should we do our cheer?”

And that Nat had then shouted, “Yes!”

(I was already smiling because I knew this would be good.)

And then Jen had said, “What cheer?”

And Nat had shouted out, before anyone else, “Brookline Sharks!”

Ned and I laughed, sharing one of our countless moments of joy in our grown up son, whom we now know is definitely gifted.

Can someone like Nat go to college?

How do I figure this out? What does a child’s progress depend on? Does the level of optimism in a parent have a large effect on how far the child goes in development, in fulfilling his potential, his telos? I’m optimistic, right?

But what do I think deep down? No, that’s too hard. That’s too big a fight. You can’t have everything. You have to accept what is. How many conversations have I had with people lately where the phrase, “If it is meant to be…” and “All things happen for a reason.”  I don’t think people in general examine those statements they make; they are using those statements to explain something that happened that they don’t understand yet, or that maybe they don’t even like.

People in general need to have explanations for what they do and experience. Is a child with a disability born to you for a reason, to teach you (and him) about life?

Or is life random and unfair and it is what you make of it? Others believe that disability is random, that it happens. There is nothing to learn from it. But I think that most of us want to find meaning, our own meaning, from difficult occurrences, and so we reflect on what disability has taught us.

Getting back to optimism and pessimism, if you believe that things happen for a reason, that things unfold to their most meaningful point, are you at heart an optimist? Or is a person who fights what is happening to them the optimist? Is the parent who tries to cure, to wipe out the autism, an optimist, because he believes that this autism was a mistake, this was an accident, a tragedy, and we should do everything we can to fight it, because we will eventually succeed in flattening out the autism.  Or is this cure-it parent a pessimist, because they only see the negative in what happened to their child?

Is it more optimistic to be able to accept what is and do the best you can, believing that there is good in life and we just have to recognize it in its many forms?

I admit that I am not always optimistic. I can’t believe that all this time I had just dismissed the idea of college for Nat, just because I didn’t know that programs existed for him. Around here, there are some programs, but they seem to be built around verbal competence. So I gave up. I drew a line around Nat’s ability and decided his trajectory.

Recently I found out about CCCAID, Community College Consortium for Autism and Intellectual Disabilities, talked at length with their staff and colleagues, and took a look at their website. Their statement of purpose is as follows:

The Community College Consortium on Autism and Intellectual Disabilities (CCCAID) was formed in 2007 to facilitate advocacy and support for programs at Community Colleges to serve students with autism and intellectual disabilities. Issues for young people as they “age out” of school systems include education, housing, life skills, vocational pathways, personal safety and medical care. The Consortium provides assistance to Community Colleges for program development and implementation and information on the availability of resources for sustainability of programs.

I’m not sure yet if there are places out there that would actually take in a guy like Nat, but I am now thinking, “Hey, why not?” If public schools are required to educate Nat, and they train teachers to do this effectively, then can’t colleges have people on their faculty who can offer continuing education, adapted curricula, and also the real life skills Nat would need to survive in the world?  Remember, I’m talking about people with Nat’s degree of issues. I don’t know, but I do know that certain community colleges, like Taft in Bakersfield, have over ten years’ track record in training people with mild to moderate autism in this manner.

Nat is not “mild-to-moderate,” he is closer to “severe,” and I do wonder what might be out there for him. One woman I spoke to, who works for a community college in the midwest (I forgot where!) told me that as long as a student could let a staff person know that they didn’t feel safe, they could go to the program! “Safety is really the bottom line,” she said, “You have to know how to be safe, or if something doesn’t feel safe.” (something like that). When she said that, I thought, Hey, Nat is almost there, then!  And I had one of those old soul-lifting moments, hope wrenching my insides upward. Could he…? Breathless near-tears moment in the middle of our conversation.

Don’t get me wrong — I’m thrilled he can work at CVS and also volunteer in the community. But if I were to think about Nat’s fullest potential, especially given his recent post-graduate personal growth — shouldn’t I then be dreaming and plotting to get him into a college program, to continue his highest trajectory?  Could he…?

Why not?