Susan Senator

I’ve begun Part II of Nat’s Transition to Adulthood:  the Day Program.  November 15 is right around the corner, so that is my goal date for having his entire Transition setting set up.  He will leave school that day and move out of his school residence soon after.  This is a lot to contend with emotionally and pragmatically, for Nat and for my family.  That’s why I’m writing these blog posts:  to tell all of you out there to get going as early as possible in your research and in your emotional process.  You look at your little guy now and think, “Oh, God, I can’t imagine him grown up.  What will that be like?  What will his peers be like?  Will they be like a bunch of lost souls shuffling around from van to mall everyday?”

I will get to that.  The only lost souls are those who are not feeling happy and purposeful in their lives.  That includes you.  I hope you are not a lost soul.  But more about that later.  I suggest you approach this the way your autistic child approaches learning any new skill:  break it down into baby steps.  Think about your modus operandi, how you operate, how you achieve things, and go with your own model.  Maybe you like to do things methodically, one appointment after another.  Maybe you do things in bursts, like me:  one appointment or maybe ten, and then none for months.  Whatever works.

First you have to learn about who you are dealing with. I would try to understand the key players, the names of the departments and organizations involved. How do you learn this?  You go to a workshop.  Pick one workshop for this year, one Transition to Adulthood workshop.  Write down your questions.  Ask a few of them, but not all.  Keep in mind that as you dip back into this stuff, it will clear up, concept-by-concept.   There are Federal Programs and there are State Programs.  Federal are for everyone, State differ.  Who is your State point person?  Cultivate a relationship with a friendly introduction via email or phone.

Next you learn about the programs themselves, what they offer. SSI, SSDI, Section 8, Developmental Services, DayHab, Residential Supports. Don’t worry yet about how to get into them.  Just learn their function. I tried to figure out all of Section 8 in one fell swoop:  forget that.  These days I’ve been touring centers in the Greater Boston area that offer a program M-F, 9-3.  These are typically Medicaid-funded (Federal $) therapeutic programs, i.e., no employment/earning component.  These are called “DayHabs.”  The centers vary in quality and goals; some do highly individualized curricula and others have more of a general schedule with a choice or two. They go out into the community (it should be much more than malls, and if it is malls, then be sure your guy is learning money skills and dealing-with-the-public skills).  Visit the program.  Tour it and get a good feel for it and the clients it serves.  Are they engaged?  Happy?  Watching TV?  Can you imagine your guy there?

Imagine your guy there:  he is part you, part the child he is now.  So you think about how you would feel there, but not using your deep and complex social knowledge.  Think about what he likes to do, and if you can’t name a concrete activity, (mostly Nat likes to be active, with people but not talking to them), figure out when he is happiest.  Does this place match that?

(Be prepared for developmentally disabled adults.  They are not as good-looking as kids with DDs.  Think about it this way:  no adult is as beautiful as a child.  We age and uglify.  Sorry.  But don’t look at these people as lost souls, broken, pitiful, sad.  An unusual face is just that:  an arrangement of features that you don’t see everyday.  It means nothing.  A voice that speaks in grunts or not at all is still fully human, FULLY human, with an inner life, even if that inner life is pictures swirling around his mind, or beautiful sounds.  I don’t freakin’ know!  I’m just saying, get past what they look like.  It’s just a body.  We can’t all be magazine people.)

Many of these centers (also known as Vendors, or Service Providers) also have Day Programs, which are not DayHab, or therapeutic only.  Day Programs often have a volunteer or employment option, but you need to find a way to pay for it.

Next you find out how to pay for it.  You need to find out if a program is an entitlement, or Medicaid/Federal money, or if it is something you have to push for with your Developmental Services point person (see above).  You need to find out how to set up your savings so that they can help your adult child someday but not get in the way of his funding.  I still don’t really understand this one, but I have a lawyer who does.  You are looking to set up a Special Needs Trust.

About guilt:  try not to go there.  Even if you have resources to support your child, you don’t want to get into a situation of depending solely on that, especially when you are gone.  You have to think of your adult child as an independent adult — that is his right, it is about his dignity.  These programs help him become an independent adult, as much as possible.  We are so lucky that our society attempts to support those who cannot do it all on their own.  We are a society that spends tons on building roads and highways and bridges.  We are a society that subsidizes farmers and to some degree, big corporations with tax breaks.  Everyone gets help and benefits from our government to some degree.  Why shouldn’t your guy?  Why is one considered a handout and having our roads built for us considered a given?  Think about it.  I wish we could all chip in and get along.

I have listed for you the big steps.  You break them down.  Do one thing at a time.  Start a notebook.  Save business cards and telephone numbers.  Build your network.

Above all, give yourself a break, take your time, but still:  do it.

I keep trying to fix everything, but I’m tired.  I’m like that little Dutch boy, plugging my finger into the leaky wall.  As soon as one hole is plugged, another leak springs somewhere else.  I just keep standing there, like an idiot, water all over my shoes.

Even before I knew nothing about Albert Camus’ version of Existentialism, I knew that you were supposed to do this.  Like the good Dr. Rieux in The Plague, who just keeps on trying to heal the doomed and dying of Plagued Paris, we’re all supposed to be good, without thought of the end product.  I was raised that way.  My mom said it was part of being a Jew:  Tikkun Olam, repairing the world.

You probably were raised that way, too, Jewish or not.  Not to be saints or martyrs, who usually died for a cause, who perhaps valued others’ lives more than their own, but rather, to be humans who just kind of work to make something better, with the hope of success, but not really.

Autism parents are often made out to be saints when all we really are are parents.  Tired parents.  When someone says to me, “You do so much,” with admiration in their voice, I fight hard to see it as a compliment.  But I can’t help but think about the double edge of that kind sword:  the implication that Nat is so so so so so hard.  The implication that another parent might not do the same because he is just so _______ blech.  My huge-but -repressed indignation rises up when I get that compliment and wants to say, “Don’t say that!  Don’t even think it!  He’s just Nat!  You would do the same because he is simply your (my) child.  All children are worthy of whatever effort.  That’s just our job as parents.  It’s not saintly, it’s not heavenly-ordained, it’s not beyond the Pale.  It is just plain old human love.  I’m sorry it’s so hard to give me a compliment, though.  I don’t expect this to be clear to everyone.

It’s like they think they have it easier than me.  But how do they know what easy feels like to me?  Some people think I do a million things in a day and they feel exhausted just hearing about my shit.  But that high energy and intensity comes naturally to me.  I find it exhausting to be bored and uninterested.  But having a day ahead of me that consists of 10-mile bike ride, teaching my class, picking up Benj from school, thinking up something interesting to write, feeding us dinner, settling down leaning on Ned on the couch and watching In Treatment while a laundry hums:  that is a good day.

Getting pissed off at something happening in the world of disability is also usually part of a good day for me.  I love the energy of my anger, and harnessing it to write something scathing and to-the-point.  I love calling my fellow travelers to arms.  But sometimes it is just so tiring.  Wave after wave of bad news hits me upside the head, such as the latest:  My beloved Barak’s proposed budget, which contains within it deep cuts to human services and education.  I can only imagine the forces of evil he is up against in Congress, the wealthy who must hold tight to their profligate way of life and who refuse to give anything to a government for the people.  That he would lay out something as heinous as these cuts, well, you shouldn’t know from it. But now you do.

Still, we have to fight it.  It’s not only not good enough, it’s bad.  It’s such a leak that it’s like New Orleans, almost.  So get out your caulk and get ready to yell because they must not cut social programs, human services.  It is the lifeline for people like Nat, who want to live worthwhile lives but will not be able to depend on their families forever, if at all.  Write to your Congressman using this easy link and tell them to find that money somewhere else.

When I was growing up, my Mom used to tell me about Israel, and how its existence is utterly necessary, because after the Holocaust — only the latest of centuries of anti-Semitic state-sanctioned slaughter — the Jews would now always have a home.  This Zionist view is what I was raised with, for better or worse.  You may disagree — and I certainly feel the extreme difficulty of the Palestinians’ plight — but that is not the point here.  The point is how I’ve always believed in this kind of security for my people, because of their multi-millenial history of expulsion and wandering. “And that will not happen ever again,” she would say, her voice rough with emotion, “because now the Jews have a home.” Counter drone security is one more security measure in your everyday life.

I have the same passion for housing Nat.  I see the history of disability as not completely irrelevant in some ways to the Jews.  For centuries, the intellectually disabled were viewed as lesser beings, as broken, pitiable souls.  They were cast out, or they were forever dependent on their families, even when their parents became old.  They were herded into heartless institutions to live out their blank days.

Along came the Kennedys and the Shrivers, who brought in a new era of Intellectual Disability Awareness.  When I heard the late Eunice Kennedy Shriver speak at the White House on her 85th birthday, she talked about how horrible it used to be, that these lives were wasted, uneducated, pushed aside, locked away.  But she knew, from her sister Rosemary’s early life, that with care and consistent effort, anyone can learn and develop.  Her Special Olympics showed the world that those with Intellectual and Developmental Disabilities were not “retards,” creatures, idiots, incapable of learning and mastery.  Now we have the IDEA, Individuals with Disabilities in Education Act, that requires school systems to educate every child, regardless of disability, race, income.

The education mandate ends at 22, and that is where there is still a gap, a chasm really, because to get to the other side of worthwhile adult life, there are so many things we parents have to learn.  It is like the diagnosis days, only we don’t have the energy we had as younger parents.  But we do have the wisdom and confidence we have gained from all the years of battling school systems, public ignorance, and poor odds.  The key is to hold onto your wiser self and try to learn what is out there for your child, little by little.  Give yourself time.  Hold onto the dream, whatever your vision is for him.  Learn, rest, learn, rest.

As of a week ago, Ned and I committed to a service provider, Advocates, Inc., to put together our housing project for Nat.  I may have already mentioned this, but I feel the need to talk about it again and again.  The more I write it down and talk about it, the better I understand.

On Friday a team of specialists from Advocates came over to assess Nat for eligibility for Adult Foster Care.  This is a lousy name for a very good program.  AFC is federal, the dollars are from Medicaid, and it began as a program to offer in-home assistance to the elderly.  Because of its elderly focus, much of the eligibility centers around physical needs.  This is an example of how our national support systems still have not caught up with the thing that is autism.  Because of how AFC is structured, trying to fit autism into its requirements is like the whole square peg round hole thing that we autism parents are really really used to/sick of.

Still, we are blessed that this country provides such a program for its vulnerable citizens.  The problem is, who the hell knows about AFC???  How do you find out?  I know how I found out.  And now I’m hoping you will know, too.

There are two levels of funding, depending on how much assistance you need.  Level 1 is about how independent you are with the performing Activities of Daily Living (ADLs), such as dressing, bathing, eating — whether you need prompts, whether you even know how to dress, etc.  Also covered are safety issues, behavior issues, attention and communication issues.  Level 2 is about ADLs, too but with the added concern of physical assistance.  If you need actual hands-on assistance dressing, bathing, etc., you could be a Level 2, which is more funding than Level 1.  Nat does not require any physical assistance, but he fits the Level 1 in many ways, and so he is a Level 1.

These days I laugh with yashtikas about the good news and the bad news:  that Nat is so disabled that he needs and qualifies for profound support services; the good news is Nat is so disabled that he qualifies for profound support services!

Not that funny, I know.  Anyway, once we committed to Advocates, the assessment team takes care of the AFC application.  Advocates will also figure out scenarios for Nat in terms of roommates and caregivers, and how we can piece together the funds for these.  Combining the AFC dollars (around $9,000 a year Level 1) with the SSI dollars (around $8400 a year, also a Federal program) and pooling two other roommates’ AFC and SSI, they may be able to support one live-in caregiver salary.  The caregiver goes rent-free as a perk, because likely the salary is not as high as one would want it to be.  But a free room and parking space in a nice urban town near Boston is pretty valuable!  Plus this caregiver would be free from 9-3 when the tenants are at their day programs — Day Habilitations (also Federally funded).  If our town creates a subsidized house (bought by Advocates, who have a lot of equity through the many homes they own throughout the region) using Section 8 money set aside for town Housing Authority projects, then the tenants only have to spend ~30% of their income (SSI check of around $700 a month).  This leaves maybe $5600 a year for everything else.  If the tenants use food stamps for food, then they can put most of the rest of the SSI check towards the caregiver’s salary.  Clearly the salary is the biggest expense.

In a nutshell, three tenants in a subsidized home with $9,000 AFC each, + $5,000 each from SSI leftover = $14,000 x 3 = $42,000.  Of course, 11% of this goes to the service provider’s overhead (training, hiring, oversight, benefits…), and of course not all the $5,000 SSI can go towards salary.

But today as I sit in my cold dining room, safe from the colder storm outdoors, I feel a sense of warmth inside, because we now have help.  We are not alone.  There is someone I trust, and more than that, there is a clear picture in my head of how it will work.  Nat will have a home, his own shelter from the storm, a place for him that is not dependent on my living forever.

I finished a really good book this morning, and then went to empty the dishwasher, when the thought strayed into my head that I don’t do much these days.  This is the kind of thought I am prone to, a vestige of my former low self-esteem.  Luckily, my new, stronger parts of my brain rose up quickly in my defense.  “What the F?  Do you know what you do with your time?”

Yes, I thought.  These days, and for the past year or so, my main occupation has been planning for Nat’s Post 22.  Every day I read something, talk to someone, meet with someone, email someone and basically move towards a complete synthesis of many streams of information.  The way I do things is through obsession.  That’s the way I love, that’s the way I work, write, exercise, and parent.  I dig in to the deepest layer, below skin, fat, and muscle; below confidence and coping, to the raw and bloody emotions around a subject and I try to feel it, see it, and know it.  Forget warts and all, I want to get to the pathology of things.  That is the only way to live.

That is the only way I can respond to all of the anxiety I have over Nat’s independent adulthood:  by fixating on the entire subject until I know it.  And I am getting there, gaining a fluency in Government Speak, where I can juggle federal programs with state agencies, rules and laws, and also how to find the catch in each kind of support offered.  I write down figures on any scrap of paper lying around — drives Ned crazy that I never get a clean sheet — and I calculate:  “If Nat qualifies for this, we will need to contribute that; if Nat can handle this level of support, we can go for that kind of living situation.”

I got so much figured out.  If I were grading me, I’d get an A- in Post -22.  So what’s the problem?  Aside from the fact that we won’t know if Nat will get state funds for even a part-time caregiver until two months before he turns 22 (yes, it’s true, at least in Massachusetts; the Department of Developmental Services gets its budget from the Legislature, which never passes a budget on time)?  The problem is that I can’t get a core group of families!

My friends who have sons around Nat’s age rarely even return my zealous, fact-filled emails.  They don’t want to deal with it.  They have full-time jobs and other pressures.  They know how to take things more slowly, to have balance in their lives.  But it drives me crazy.  I want someone to nudge, someone to compare notes with, but it has to be someone I’ve known for a while.  Someone who knows Nat and whose kid I know!  This is part of my dream:  to have Nat live with guys he knows and likes!  How great would that be?

Why won’t they sit down and plan with me?  Am I that much of a pain in the ass?

But imagine if the boys could live near us!  Not with us, near us!  A few weeks ago I found a really cute 3-4 bedroom dump of a house right nearby in a great part of my town.  Affordable-ish.  An agency could buy it and fix it up.  My town could be persuaded to provide a Project-Based Section 8 and reduce the rent, saving the rest of their SSI checks for food and part of their caregiver’s salary.  The caregiver could live in the fourth bedroom rent free to supplement.  I could see it.  It was perfect.  I imagined painting it all of Nat’s favorite colors.  I imagined big loud young men stretched out in the high-ceilinged livingroom, rejoicing every time the T went by (the D-line runs right behind the house!) (these young men love trains).  I thought of how they could go on walks with their caregiver (three young men could share one using Adult Foster Care money, if they qualify) to all Nat’s familiar haunts:  Starbucks, KuKoos Cafe, the Library, Peet’s, JP Licks, Booksmith, Panera.  It would be so easy to live there without even having to buy a car for the house because they could walk to Stop&Shop.  They could join ZipCar if they needed wheels.  They could use The Ride. Someday.  You gotta have goals.

I am so obsessed with making this happen for Nat.  This feels like the way I planned before he was born.  I read Consumer Reports to learn about the safest baby equipment.  I learned about de-leading an old house.  I read and read about what labor and delivery are like.  I joined La Leche League so that I could nurse him (I didn’t).  I wondered about cloth vs. disposable diapers.  I did not let myself think about disability or anything like that, but the worries lay inside my heart like clogged arteries waiting to close up.  So I didn’t learn about that.

This is like awaiting the birth of Baby Nat because I am full of hope!  Paradoxically, this process makes me excited.  I feel proud of understanding The System, of the helpful connections I’ve made, of the vision that I now have.  My mind is on all its cylinders.  Nat’s adulthood does not make me sad or scared (most of the time), because I have explored every dark corner of it that I can.  I am leaving very little to chance or the vicissitudes of state budgets.

Yes, yes, of course this could turn out just the way Nat’s babyhood turned out, where nothing matched up with what I had prepared for.  It was like I had studied for the wrong exam.  Autistic babyhood was not covered in any of the bestselling baby books.  I still have a little poisonous hatred for Brazelton and What to Expect the First Year.  Fuck them for not knowing Nat.

Sorry.  Anyway, I need to talk and think about Turning 22 so much that I’m writing this down today.  If I am wrong, I will deal with it, after being knocked on my ass by Nasty Reality.  This is my boy, after all!  My orange-and-yellow Nat!  If I’ve learned anything from the Incredible Horrible Wonderful Clueless First Year of Nat, it’s that as God is my witness, I’ll never be helpless again.

20 years ago, when Nat was a baby, we lived in a terrible little place.  It was not terrible to anyone else but me.  Most people would think it was s cute little “starter home” neighborhood, filled with young families and stable older ones.  But to me it was awful.  All I could see was the ugliness of suburbia:  tiny vinyl-sided Capes and cars parked everywhere and luridly colored plastic toys covering perfect links-green lawns.

Was everything ugly to me because I was sad about my unexpectedly self-contained baby?  He wasn’t silent; he wasn’t placid; he wasn’t difficult; he wasn’t easy.  He was who he was, but he was not whom I had expected.  Something was “off” but to this day I don’t know if that was me or him.  The years stream by and wear down my memories like a river softens rocks; days stand out polished and bright but sometimes become years.  What was what?  I don’t know.  I draw on this very flawed pool of feelings and memories to explain new thoughts I have.

In the bad little neighborhood, the only thing I liked to do was take my baby on long long walks.  The neighborhood seemed endless; you could walk and turn and walk and you’d never leave it.  The little curvy streets ran into one another, forming a large web.  I liked that, because parts of the other streets had slightly prettier houses and gardens.  So I would walk there and show them to Nat.

I would talk to him the entire way.  Not as a Mommy to her Baby, but just me talking to him.  I actually wondered if this was OKAY — the first of a million moments of self-doubt around Nat.  Or should I be talking to him like, “Oh, look Natty!  A dog!  What does a dog say?  Woof, woof!”  And on and on.  But I hated doing that.  I also hated myself for hating that.  But still I just talked to him, Sue to Nat, and lived with my self-hatred.  I talked to him about whatever was on my mind.  I needed that.  Ugly houses, fixing up our house, moving away, mean neighbors, people I was mad at, people I loved.  Things I wanted to do with my life.  I’d look down at the stroller sunshade — maybe it was back, or maybe it covered him — and at his feet sticking out in front of him.  His feet stood at attention — until he inevitably dropped off to sleep.  Then they would collapse, toes inward.  I used to love seeing the difference.  Nat was just so Nat, even then, so definite in his various states.

I didn’t know it at the time, but talking like that established something between Nat and me.  This was to become one of the cornerstones of our relationship.  This sounds corny as I write it, but I feel it is true.  I have always talked to him regularly.  I have also always talked to him teacher-ly, when I have to explain things to him.  Social-storylike, to be sure he understands.  But there is this whole other dimension to our talk that is just plain talking, where I don’t stop and wonder if he gets it.  He listens, either way.

Like just now, I went into the kitchen for more coffee, while Nat sat in the windowseat watching.  “I just love my morning coffee, Nat,” I said quietly, holding the pale green mug carefully in my hand.  “I love this book I’m reading,” I also said to him.  He didn’t answer me; he knew he didn’t have to.  It was just Mom talking to him, telling him what was on her mind, in her heart, or simply right in front of them.  And he would probably just listen until he was tired of it.  And indeed, he is now gone from the windowseat, into his own thing.

I was looking for a place to toss a shovelful of snow that I’d just dug up next to the car when I thought about Nat.  Nat was still at the group home, but we had told him that as soon as the snow stopped and we were dug out, we’d come get him.  I threw the snow right or maybe left — we are really running out of space and the drifts bordering the driveway are about five feet high by now — and I imagined Nat and his brothers shoveling.

We are all really good at shoveling these days.  I pictured handing the shovel to Nat and seeing him push it down and push the snow aside.  No problem. But it used to be.  Such tantrums!  He couldn’t be outside with us.  And if we left him inside, he’d freak out in there, watching us working outside.  The horrible feelings I had, knowing I couldn’t be inside or outside.  There was no place to go, no place to be on this earth because my child was so unhappy and he could not understand what was going on.

Now he shovels snow willingly and competently.  Yet another skill, another feather in Nat’s cap.  How did this come to be?

We made him do it anyway.  We lived through tantrums.  We had shoveling (shopping days, movie outings, parties, holidays, vacations, meals, sleepless nights) days that ended badly.  Nat has been exposed to a lot of activities.  It’s as simple — and difficult — as that.  The more Nat experiences, the more he is able to do.  As soon as we realized that we needed to familiarize Nat with as many things as possible, we started to take him out, make him be around people and go to new places.  It was almost always really, really hard.  We tried a Cape Cod vacation:  terrible.  Each year, not as much.  Stayed with my parents:  it got better.  Switched to the ocean, rather than the bay side and brought boogie boards:  success.  Still difficult, because he walks in circuits and ends up too close to others’ blankets. But still, we enjoy ourselves for a lot of it.  Not all of it, but enough.

Challenger T-ball; failed.  A year later we tried Special Olympics gymnastics: success.  But bumpy success.  Nat sometimes slapped people or had tantrums or spaced out.  We stuck with it.  Or rather, Ned did.  I’m the coward of the two of us.  I find out about stuff and dream things up, but Ned very often ends up following them through. You gotta have at least one parent who doesn’t mind people staring, or an occasional pinch.  I think that even if you are a single parent, you should find a way to have a second person around sometimes.

Vacuuming.  Food shopping.  Parties.  Shoveling.  We took Nat places.  Even for abbreviated visits and outings.  Because even if he had tantrums during the event or activity, it was becoming a part of his repetoire.  Stored data.  Information he could draw on for the next time.  If there was a tiny seed of it already there in his mind, no matter how sharp and horrible that experience had been, it was now lodged there, resting in his gray matter.  And that is the most fertile ground there is.

To my readers:  please feel free to take this letter, copy it, and personalize it with your own thoughts and situations.  Here is a form to email the Governor.  Folks, this is the way to take responsibility for your children’s futures; one email at a time.  You gotta start somewhere!  Thanks for taking this on! –Susan

Dear Governor Patrick,
I have met you a couple of times, at various events and the EOHHS Summit last year.  I am the mom of a 21 year old young man with severe autism (Nat), and the author of 2 autism parenting books. I gave you a copy of one of them at the UMass Summit.

Governor Patrick, I am a huge fan of yours.  I worked for your reelection through my blog (20,000 hits a month) and other networks. I know you believe in helping our most vulnerable citizens, like my son.  So today I am asking you not to allow the proposed cuts to Medicaid that would affect Adult Foster Care and DayHabs.  You must know how terrible the consequences would be if this were to happen.  DDS has already endured cuts in Residential Funding over the last few years, making it extremely difficult for even those eligible for DDS to get 24/7 Res. funding.  Many who don’t quite qualify opt for AFC, piecemeal though the care may be.  Many of these are grateful for the DayHabs offered, for without them they would sit home doing nothing, if they are lucky enough to have homes.  My son is lucky that way, to have both parents healthy and young enough to care for him, and yet as lovely as he is, sometimes in the past his frustrations with this complicated world have made him lash out at us.  This can be scary and dangerous to him and to us.  Nat is not unlike many others on the autism spectrum, who work so hard at connecting and being understood (contrary to the stereotype that they are uncaring of others’ states of minds).  But sometimes he just cannot hold it together.  He is human, after all.

I tell you this to remind you that the Developmentally Disabled *need* the Medicaid supports — many because there have been so many cuts in other departments!  The MassHealth programs have been their lifelines.  Please don’t allow them to be cut.

There is something you don’t think about when you are an activist for a cause:  it is so boring.  Just when you think you have won — pyrhhically of course — you think you can rest your sword for a moment, and then pop! there’s another head on the Hydra.  You gotta get up and slay that damned thing again.  The problem with this metaphor is that it is not a satisfying action like a real head wallop would be; there’s no blood, no green slime.  No, my Hydra is something as amorphous as a statement drafted by a group proposing something stupid.  In this case, the Executive Office of Health and Human Services (EOHHS) in Massachusetts has proposed making cuts to Medicaid-funded initiatives.  The targets?  Adults with developmental disabilities.

Are you jumping up from your seat, hand on your sword, yelling”Let me at ’em!  Show me the monsters who would take funding away from people who already have so little support to count on!  This won’t happen because it is so obviously wrong!”

You go looking for the monsters and you can’t find them.  That’s because it is a group of people you normally trust, like Ann Hartstein, Secretary of Elder Affairs, Jean McGuire, EOHHS Assistant Secretary of Disability Services and Policy, Rachel Richards, Director of the MassHealth Office of Long Term Care and Elin Howe, DDS Commissioner.  I’ve met some of these people face-to-face at dinners and conferences, along with the Governor.  They are good people.  They are in this field for a reason, or at least they were:  to improve the lives of those in need in the Commonwealth of Massachusetts.  I truly believe that.

But — they are making a big mistake, and they are dealing our kids a heavy blow with this new news.  According to the ADDP (Assoc. of Dev. Disability Providers) and the ARC of Massachusetts, the Hydra head takes the shape of cuts to Medicaid:

“[The above EOHHS leaders] met yesterday with representatives of elder and disability services community.  The meeting titled “Secretary’s Review” was held to announce cuts in long-term care spending in MassHealth.

Specifically, reductions subject to hearings scheduled in late February and planned for March 15 include:
Day Habilitation        3.7%             Day Hab
Adult Foster Care      6.2%            AFC
Adult Day Health       7.5%            ADH

The cuts would be implemented in the last quarter (April-June) of Fiscal Year 2011 and then be carried into 2012.  The total cuts which are for FY’11 followed by FY’12 include:

Day Hab-       $1.3 M & $5 M (M=Million)
AFC-             $1 M & 4 M
ADH              800,000 & 3.3 M

EOHHS also plans a subsequent reduction in group adult foster care ($1.25M & $5 M).  Director Richards noted that administrative burden reductions would accompany the cuts and it is hoped that this will ease the financial impact. “

There you have it.  Our Executive branch, fresh from re-election, has targeted the one remaining ace-in-the-hole of Residential Support for the Post-22 Developmentally Disabled crowd.  The cuts will affect nearly ALL post-22 on the spectrum who need a day program because they’re not working, who need living support…

Okay, plain English:  this likely means your adult kid .  Because we all know that getting funding for residential support from DDS was difficult to get in the first place:  DDS funds are IQ based, many many on the Autism Spectrum would not have gotten DDS anyway…but they would still need support, right?  So where would they go?  They probably would have tried for the Medicaid-funded programs like Adult Foster Care (AFC) and DayHabs (which are not run out of the DDS budget).  WELL, NOW THESE ARE GOING TO BE CUT!!!

And as for those like Nat, more deeply involved with their autism, we had hoped that he could possibly get DDS residential funding and would not have to go for the now-to-be-cut Adult Foster Care.  But guess what?  My friend Cathy Boyle. founder of Autism Housing Pathways, did some figuring, using data from the EOHHS site, and here’s what she came up with:

“DDS only serves those with IQ of 70 or below (on average, 41% of those with ASD)

527 with ASD between 18-21 in 2008/2009

Average of 132 (527 divided by 4) will turn 22 each year (probably a low number, as it assumes the 2008-2009 numbers will not increase in subsequent years

****Implies 78 22 year olds with ASD (59%) are *not* DDS eligible each year****

From FY08-FY11, the DDS Central Middlesex Area provided 24 hour residential to an average of 4 individuals turning 22 per year; multiplying this by 23 area offices implies an average of 92 people turning 22 per year who receive residential services, or 15% of those turning 22 served by DDS

Implies ONLY 8 of the 54 with autism served by DDS will receive 24 hour residential!!!!!!!!!”

HERE’S THE PUNCHLINE:  So what would the remaining 22 year olds with ASD each year do for residential support??  They would turn to Medicaid-funded programs, that are now to be cut.

Here is what you have to do when the monster rears yet another ugly head:  you have to go to hearings.  Your testimony is your sword.  The Hydra is invisible; it is no one ugly person, no one horrible committee!  This enemy is not “all politicians” nor is it “evil bureaucrats.”  You can’t really put your finger on its slimy hide.  The way you fight it is with long, tiresome treatises like this blog post.  You write letters to the editor.  You call Commissioner Howe, or Governor Patrick. You call your own Legislator.  You go to the hearing and you try to give some kind of statement, known as testimony.  You can even write it up and hand it in.

Hearings are scheduled on the following dates for these programs:
AFC              Boston on February 22
Day hab        Shrewsbury on February 23
ADH              Boston on February 24

Try to go.  It is mind-numbing, inconvenient, boring, tiring.  It is anticlimactic.  Nothing gets decided then and there.  You go downtown, you sit, you listen, you help fatten the crowd.  Maybe you say something in a querulous voice.  You go home with a headache.  You hear a few weeks later that they are not going to make the cuts as bad as they said.  You exhale, and go on with your life, making plans for your adult child.

It’s boring and kind of ugly and shades gray and full of red tape.  But it will eat up all or most of his adult supports.  And it attacks when you least expect it, and when it’s through you will have next to nothing for him but your own home, your child’s bedroom — if you even have that.

I am eventually going to de-mystify Turning 22, for me and for anyone else who’s reading.  I’ve been giving a lot of talks this year and maybe it’s my own energy around the subject, but I’m finding that the parents in the audience want to hear about post 22 more than anything else.  My talk has thus begun to shift towards Nat’s later years, towards new topics such as “the dignity of risk,” and “letting my autistic child move out,” and “fostering a connection with my adult autistic son.”  Where my main topics used to be things like “Pre-diagnosis confusion and loneliness,” and “Finding the right school program,” and “Sibling relationships,” I am adding in so much more about Nat as he is now, or as he’s been in the last 5 years.

I’ve had more hope and excitement in the last 5 years than in all of Nat’s childhood years.  That’s because I’ve seen more growth since age 15 or 16 than I used to see.  I will never know why it happened that way:  was it because I was so panicked in the early years that I stressed him out too much?  Or was it that he was not progressing quickly enough that panicked me?  What was real and what was my perception, my filter?

More and more frequently, I feel positive about Nat, counter to what I maybe should be feeling.  I feel good for two reasons:  the Big Picture, and also the fact that I’m conquering my ignorance about Turning-22.

When I look at the Post-22 programs, funding, regulations, and limitations our country and my state offer, I could conceivably be very worried and pessimistic.  But I’m not.  I feel, for the most part, proud that our country has so many programs, as limited and as poorly funded as they are.  We are still a great society, a country that tries to take care of its citizens, though sometimes not as efficiently or as thoroughly as it ought.

The problem, as I see it, is that the information about the programs is buried in many different places, like the way a paranoid old miser hides his money:  some under the mattress, some sewn into his coat hem, some in a safe.  All of the different programs and revenue streams for developmentally disabled adults are shrouded in dusty old office buildings, or ten clicks away from the original link, or embedded in text that would make a 1040 form read like an Archie comic.

This is what I want to talk about, what I do talk about, to anyone in my circle, to anyone who’ll listen.  I don’t want to get all Chicken Little on your ass and scare you about Post 22; rather, I want to make you clear-minded.  The other reason I mentioned about feeling positive about Nat as an autistic adult is that I am beginning to understand The System. I’m getting it.  So now I want to talk about it systematically, so that everyone after me will have steps to follow, but the trouble is, this didn’t happen for me in steps.  It happened in bursts, in gusts of clarity and energy.  Whenever I had the time or attention span to listen to the gurus I’d identified, I listened with my eyes wide open.  I repeated facts and asked the same question over and over again until I understood.  I made myself look stupid and pain-in-the-assish, but I finally get it.

Here’s a few things I know, FYI:

1) Apply for your kid’s SSI as soon as he’s 18.  That way he’ll start receiving a fairly substantial regular check that you can use for his expenses (therapy, gym equipment, tutor, summer camp).  And more importantly, he will be eligible for Medicaid.  BTW, don’t try to apply for SSI online; go in person to your local office.

2) Medicaid is not just an amazing insurance program that pays for a lot of your child’s care that ordinary insurance will not.  Medicaid is also the way to get him a day program post-22.  In Massachusetts and many other states (I believe), Medicaid funds the DayHabs, the 9-3 program your child can go to M-F.  It is up to you to explore various DayHabs to find the best (they are not all alike).  You can start exploring DayHabs whenever you are ready.  You find them through service providers, or sometimes they’re called vendors.  Your Department of Developmental Services (DDS) should have a list.

3) Find out your child’s Priority rating with the DDS, if he is even eligible for this scanty funding.

-In Massachusetts, it is through DDS that your child would receive Residential Support, e.g., the staff to support him while he is not in DayHab.

-Sometimes the DDS has money to fund certain Day Programs that are not DayHabs.  Day Programs might have work as a component, and they are highly desirable, but the funding is scarce.  Still, if you find a Day Program you like, push for it with the DDS.

4) If your child is not DDS eligible but gets Medicaid, see if he can qualify for Adult Foster Care funding (AFC).  This provides a stipend for a live-in caregiver.  Not enough for full-time, but if he lives with another peer with similar needs, perhaps they can pool their AFC money and have enough for one caregiver to share.

5) Apply, in your child’s name, to the Section 8 waiting list.  It is approximately 10 years to wait, but before you know it, that time will pass.  There are some centralized lists that basically all use the one application so you don’t have to apply to hundreds of Housing Authorities (Housing Authorities administer the Section 8 program).  My next book will explain Section 8 but basically, once you have a mobile Section 8 voucher, you can look for Section 8 housing and you only have to pay 30% of your income towards rent.

-Project-based Section 8’s are a good deal.  They are not assigned to a person like the mobile vouchers; they are assigned to a property intended for Section 8 eligible tenants.

6) Network with parents you know who are in the same boat.  Cultivating your child’s community is as important as securing funding.  If you have a committed group, you can accomplish a lot.  Make friends with the parents in your kid’s class; take him to Special Olympics events to find peers for him and parents for you.  Go to support groups to find kindred spirits.  Think of this as if you are an old fashioned parent trying to find the right spouse for your child.  You will be going into business with these people and you need to be able to work with them and depend on them.

I will also talk in later posts/my next book about how to come up with the kind of living arrangement you think your child would like — either with his help, or if he can’t give you that kind of information, how to figure it out for yourself.  Also, how to find people to staff, train, and run the Residence.

But not tonight.  I have a headache, and as Nat told me earlier, “Mommy lie down.”  So, later.

I’ve always lived in New England, so these long winter vacations at home are very familiar to me.  Memories of the whiteness and the pervasive cold are as much a part of my days as an extra sweater and socks.  And being a mother during winter vacation is perhaps the most familiar feeling of all — although now that I’m seeing that we all really do get older and things change, I am aware that even winter motherhood won’t always be like this.

My first child moved out and it was like he was ripped from my womb.  As melodramatic as that sounds, it felt that horrible to me.  I think this feeling was because I also needed him to leave, I wanted him to leave, and that fact hurt as much as having him gone.  Friends tell me that even when the child who moves out is “typical,” the feelings are mixed like that — you both want him to go and you are sad to see him go.  Each of us feels a different degree of readiness for that passage to happen.  I was ready for Nat to go, but that fact deepened my pain, because all my life I had vowed that I would not do that.  I would not Go Residential (interesting that I thought of it that way, the same construction as Go Insane); I would hang on to Nat and keep him with us.  So when I needed him to move out, it felt like a failure, a broken promise.

It is neither of those.  It was painful, but that didn’t mean it was wrong.  Nat’s move-out was the best thing that ever happened to him, other than going to Extreme Sports Camp for Autism, learning to ride a bike, going with me to Disney, and joining Special Olympics.  These leaps of his were such risks at the time, depending on his age and developmental stage, but they ended up being moments that propelled him into an utterly new way of being.

Faced now with my second child leaving, I find some of these dynamics recurring, shaped specifically around Max, but familiar and scary all the same.  Last night Max called us to say he was spending the night at his girlfriend’s house.  Max is a few months shy of 19, a young man who has traveled on his own, who works nearly fulltime, whose cap is feathered with many adult achievements.  It is not the first overnight he has had with Hannah.  But last night, Nat was very aware that Max wasn’t home.  He has become increasingly aware of Max’s whereabouts, of his new activities, like not being here for dinner, like driving and like staying out way beyond our bedtime.  Max’s presence is unpredictable, and Nat is adjusting to that.  Like the changing of vans, seasons, bedsheets, and breakfast routines, Nat notices the changes around Max with great interest and discomfort.

When Max called, Nat bolted downstairs; he seemed to have been waiting for this.  “Max will come home,” he said almost immediately.  He was straining to hear what Max was saying on the phone to Ned.

“Okay, you’re staying at Hannah’s tonight,” Ned was saying into the phone.  I looked at Nat in dread.
“Max will sleep home,” Nat said.

“No, Sweetie,” I said.  “He’s staying at Hannah’s.  He’ll be home tomorrow before lunch.  You want to talk to him?”  I figured maybe it would feel good to him to hear Max’s voice.  Max is always willing to talk to Nat; sometimes he talks to him when we are out, when Nat calls from his group home.  Max always has a smile in his voice when he greets Nat:  “Hey Nat, what’s up.”  Nat often answers him.  I think Max is tickled by how much Nat pays attention to him.  Max accepts this warm attention as naturally as he accepts all of the admiration that comes his way.  He’s a golden soul; he’s always been loved by the world, and he has always given love as easily.

I don’t think Nat can remember a time when Max was not there, because Max is only 2 years younger.  When you show Nat baby pictures of himself or Max, he says it’s Ben.  Ben is the only baby Nat has known.  Max was never a baby, in Nat’s experience.  Max was his Constant.

Max waited on the other end of the line to talk to Nat, but Nat did not want to.  We said goodbye to Max and I could see Nat tense up.  Here was one of the most familiar sights and feelings of my life:  all of Nat’s tremendous energy compressing into frustration and panic.  I get a flash of panic that I won’t be able to handle him, that all will spiral out of control.  I looked at his hands and I remembered his sudden pinches and scratches, the way he’d become like a human thresher, slashing at us rhythmically, unstoppably.

But no, that is not what happened.  I knew it wasn’t going to happen.  That stuff is in the past.  Nat is not a machine, he is a complicated adult whose understanding of the world is becoming both clearer and more layered.  “Sit here, Nat,” I said, reaching for his hands, trusting that they were just hands, even though they were curled tightly in tension at the moment.  He sat and said again, “Max will sleep here.”

Ned explained gently that Nat was not sleeping here tonight.  We both repeated the litany, that Max would be there, but would come home late morning.

Nat listened, his body bent over heavily.  At last he said, “Max will put on pajamas.”  This meant he was beginning to imagine Max sleeping somewhere else, and he was trying to work out all the logistics.  Where would his pajamas come from?  Did he have a toothbrush?  Unlike Nat, I do not want to know the answers to those questions, but I told Nat with great certainty that Max had pajamas there and that he would still be able to brush his teeth.  All would go on, differently but normally.

Ned brought out the chocolate, our family’s medicine, and Nat accepted some, but not with the usual enthusiasm.  He was definitely bothered by Max’s absence, saddened by it, but also trying to move on.  I only hope I can be as gracious when Max leaves in the fall.

The Doctors’ Lounge site ran a relevant and sensible finding by scientists at Johns Hopkins U.  Apparently adding in a component of focused social engagement into ASD toddlers’ interventions increased their social abilities, wherein they were better able to give “joint attention,” eye contact, and “shared positive affect” with others (HealthDay News).  This is the kind of science we need to see.  I think we need to devote equal attention to positive therapies that build skills for those with ASD, as much as finding out the causes of autism.  I used to take the hard line that we didn’t need to know the causes so much, but truly, we do.  Autism is a difficult disorder to contend with, no argument there, so most likely we would want to know its causes and have less of it, or at least have it be less severe if possible.

I’d also like to see studies that worked with older folks with ASD.  Toddlers seem to me to be low-hanging fruit.  Plasticity of brain and all that.  But I believe that all of our brains are plastic enough, practically saran wrap at this point, plus there’s all that white and gray matter not even being used.  So let’s figure out a way to tap into that, damn it!

We need to encourage similar studies in adults with autism.  We need to stop acting like they don’t exist.  We need to stop acting like they’re a lost cause.  We need to look at them, and see them as the people they are, with all that they have to offer.  Untapped potential!!  Open the floodgates!  Imagine what we might find.  The Hopkins study is important in that it helps create better understanding of ASD among the neurotypical populations.  Understanding works both ways.

I love it when I’m right.  This has been quite a week. A typical Christmas break week.  I watched War Games the other night, a movie I’d never seen, but one that we all could agree on.  I learned what Defcon 1-5 is really like from that flick.  It wasn’t bad.  The movie, I mean; Defcon 1 was bad.  “Not bad” is actually pretty good for us.  We have so many variables it is a strange common denominator indeed that links us together.   A lot of what we do as a family of five with one 18 year old fully deployed male, one 21 year old male, fully activated and but still in need of some programming, and one 12 year old newest version still in Beta.  (huh?)

Our Christmas break goes something like this:  Nat comes home, and I’m so so so happy to see him.  I kiss his rough oily face and marvel at his size and presence.  He stomps and stomps around, and it’s all very endearing, even to the point of calling it “Joyful House Stompies.”  But this is actually Defcon 5, the most peaceful stage of homelife.

Then I notice a day or so later that the House Stompies are not so Joyful.  They’re  just loud.  And repetitive.  Nat is everywhere:  running up the back stairs, to the third floor, down, then down the front staircase and into the kitchen.  Takes a look at what I’m doing — or not doing, as the case may be, because I’m always disorganized in Nat’s eyes, when it comes to making meals — then circles back upstairs, sits on a bed, runs back down. We just purchased a new bedspread from homefaith. Maybe a quick sojourn into the livingroom, to see what they know there (nothing; everyone but Nat is glued to a laptop or reading; why read when you could be running all over the house loudly, from room to room?  Normal is defined purely by the majority.).

So I start to come up with projects.  I’ll bake gingerbread with him and Ned will take a walk with him.  I’ll take him food shopping and then make him carry my laundry up and down on those practiced legs of his.  Ned will see what he thinks of the iPad.  I’ll see if any of his teachers want to come by and do something special with him.

Still, over vacation we have our own inner lives, our own desires — Nat included — and these orderly plans don’t always pan out.  For example, the other day, I got all psyched to have a quiet house for an hour while Ned took Nat out to Peet’s to pick up a pound of our favorite decaf (French roast).  Problem is, Ned needed to help a friend out with something right after he had given the signal to Nat to get ready to go.  So we were already on Defcon 3, which is the level at which Nat already has on his shoes (Defcon 2 is coats on, Ned’s shoes not yet tied.  Defcon 1 is some other unforeseen delay).  But sometimes Defcon 3 can blow straight through 2 and suddenly, Houston, we have a problem.

Ha ha, that’s so funny now, in retrospect.  But when it was happening, Ned was on the third floor in his office (where it was quiet) trying to help our friend on the phone, Max was on the second floor with two friends over discussing video games, Ben was trying to keep his cool while chatting with numerous friends on Buzz, and I was — what the heck was I doing?

Whatever it was, I could see Nat was escalating.  I heard, “Take walk, take walk,” in increasingly higher pitch, the stomping even harder (loose old house ceiling fixtures clinking).  My pulse racing, Think think think Susan.  Scared, scared…memories dark the corners of my mind…pissy, ordure-colored memories, of the way we were…

Can it be that it was oh so simple then?  Let me tell you, it was not.  I used to be so lost in Nat’s upset.  My mind would go: “Ahh! Benji!  Scared! Stop it! Loud! Think! Don’t reward bad behavior!  Must stop bad behavior quickly! Reward it — who’s going to know? Act! What did the school say to do?  Fuck the school!  Our house is blowing up!  Siege, warning, warning…NAT!  STOP THAT YELLING AND STOMPING,” I say, yelling and stomping.

But that was then.  You see, neurons can be retrained.  Mine and Nat’s.  All I could think this time was, “Come on, Ned.  Nat is getting upset, thinking he may not be going on a walk.”  I could see Nat was so upset, and I felt bad for him.  I yelled at Ned a little, and then I thought, “You know what to do.”

“Come on Nat, come sit with me.”  He followed me upstairs.  “Sit here,” I said, sitting on my bed.  Not a time-out.  Just the two of us sitting in a peaceful place.  The sun through the lace curtain was soft, etching filigreed gray shadows on the white bedspread.  Quiet air lay heavily, reassuringly on our shoulders and against our ears.  Nat began sucking his thumb, a good sign.  The loud chirps rocketed me back in time, to 1990, to another room, the same bed, my beautiful golden baby next to me, refusing to nap.  Oh Nat, I thought.  We are still the same.  We are still you and me.  “Let’s just wait a little bit.  Daddy is almost done talking on the phone.  He will come.  You will go on your walk.  I promise.”

Nat exhaled deeply.  He heard me.  And so we just sat together.

My pride in my 18 year old son, standing by the sink peeling potatoes, is as brilliant and sharp as my sadness for my 21 year old son, banished from Ned’s stepmother’s kitchen.  In the past years both have learned their way around a kitchen:  Max from his girlfriend who studies and thinks deeply about the existences of all living things, and Nat from his group home where everyone is expected to pitch in with meals.  Max is embraced and pulled into the gravity of family excitement and anticipation, his large, capable hands grabbed and filled with gifts and tasks.   Nat is a force unto himself, walking with knife-like strides through the family clusters, making his route, a long flat figure eight from living room to dining room to sitting room.  The eight should include the kitchen, but this is not allowed.

I am having a beautiful afternoon, bruised by this one thing.  Why is the kitchen welcoming to Max and not to Nat?

I don’t know why I so often see things as what one has and what the other one does not.  I come from a family of four; we were two girls only 19 months apart.  Many families do the “X-sister and the Y-sister” thing, convincing themselves that whatever one sibling is, the other one can’t be.

I don’t want to see things this way because such thinking diminishes both children, actually.  Outwardly Max gets to be the ultra-accomplished child, so easy to be around and to love, in contrast to his puzzling older brother.  (And I am not even going into the dynamic of the third brother, 12-year-old Ben.  Not in this post.)  Seems like it’s great to be Max, but what if Max wants to fuck up?  Does Max get to be a pill?  Does he get to be a gloomy teenager, someone who makes you frown sometimes?  What does it feel like to be so easily loved by the world?  Is there a downside?  Probably not much, but emotions and situations are never simple, never unblemished.  I want Max to be able to be ugly if he needs to be.  No living person should be beatified.  We all need our uncertainties, our flaws, our disabilities and our inabilities.

I completely understand that we all figure out our ways to make it through life, to navigate our way around the many strange and varied souls we come across.  And that this is what was happening yesterday with Max and Nat and the kitchen; it is easier for some to go with the apparent flow of Nat as “out of it” and someone to manage and maintain, rather than to dive into his depths and see what there is to grab onto.  I float lightly around him myself at times.  But I can’t help it, it hurts, it really does, to see others making assumptions about Nat that are so ignorant.  I understand that they don’t reflect Nat’s reality at all.  Still, I don’t know what he might feel about being viewed this way.  Maybe he doesn’t notice.  But what if he does?

What is cutting into me is that maybe I could have helped with all of this but I did nothing about it.  I did not know what to do about it.  I wanted to enjoy myself, with Ned’s sister Sarai, and her baby Willie, and everyone else.  I did not want to upset anyone or ask awkward questions, like, “What are you afraid is going to happen if Nat wanders into your kitchen?”  I did not feel up to being a teacher, and saying, “hey, did you know Nat could help with the potatoes, too?”  Or maybe I could have merely shown everyone, taken the Teaching Moment to say, “Nat, please help Max by rinsing off those potatoes.”

Here’s the crazy-making thing:  I also wanted Max to have his star moments of being this great guy helping out.  Look how far Max has come; he used to be just like Baby Willie. Blond, beautiful, pink-cheeked, laughing, running, breaking stuff, spilling, proudly telling us the colors and the noises of each animal.  Filling up everyone’s hearts with Baby Goodness.

And so did Nat.

Yesterday I wrote a horribly depressed blog post but if you blinked, you missed it.  I took it down.  I am terrified of showing the ugly despair I feel sometimes.  I think it is human nature to want to hide that from the world, like a cat in a litter box.  I do show more of my honest and grotesque thought processes than many people, and I do that because after a while I can’t keep it shut inside my own skull.  But I need a Medieval barber, someone who can apply a leech or bleed me and let out the toxic spirits.  That’s what this blog is for at times.

The poison comes from self-loathing, or perhaps self-knowledge — meaning that I’ve come to realize that something I do is not the best course of action and yet I do it anyway.  Unstoppable habits:  this is the stuff that nightmares are made of.  We know we shouldn’t — and yet we do it anyway.

I know I should engage Nat.  I know I should organize Nat.  I know I should have more expectations of him when he’s home.  No, no, don’t tell me that he needs his downtime, the dignity of orchestrating his own weekend day.  I know that.  I believe that.  And yet, as his mother, I am supposed to guide him towards self-improvement and growth.  It is my job, just as it is any parent’s job to teach their children the right way of doing things, to show them how to be self-preserving rather self-destructive:  to push them to grow.  The child’s softness and underdeveloped social and mental muscles have to be exercised regularly.  We are the ones who are supposed to oversee that.

But I’ve let things go for too long here.  All three of my sons spin off into their own worlds, deeply invested in their projects, their habits, that for me to step in now would be an enormous effort.  When do you decide that your child is fully formed and not in need of your intervention?

Somehow we can all pretty much say that Max is “done,” and can take care of himself, with minimal oversight.  He’s in a committed relationship, he has a good job, he can prepare meals, and he can be left alone overnight.  Ben, on the other hand, is not yet “done,” because he doesn’t take care of himself as well.  If left to his own devices, he’d stay in front of his art forum and his game design and he’d only eat ice cream when he came up for air. But I figure he will be done pretty soon, once he internalizes constructive habits, once I see him going for an apple on his own, once I see him close the screen and sit down with a book or a pad and pencil.  I already see signs of that, so I’m not afraid for him.  I see that he can arrange his own social life, he can get his schoolwork done, though it takes hours and hours.  I’ve seen him advocate for himself in so many little ways that are actually huge.

So how about Nat?  When will Nat be “done?”  The overall assumption is that he won’t ever be done.  His disability label takes that away from him.  His limitations seal the deal.  I am eternally on the hook for teaching him more and more and more, for overseeing his development.  Parents of people with disabilities understand and feel that hook and that is why there is so much more anxiety in their lives:  the knife of ultimate responsibility sits poised at our throats.

This is the danger of seeing our children as a long checklist.  Having the developmental tasks stretch out before me makes me feel tired and hopeless.  It reduces all that we do to effort and mental calculation.  How many constructive activities did I manage with Nat this weekend?  Okay, well, I brought him to a densely packed Christmas party, where there was even a dog, and he paced from room to room, avoiding the dog and looking for new things to eat.  Occasionally I would grab him and introduce him to someone, or give him a kiss, and try to make him respond to people when they addressed him.  It’s funny how the others would try to get me not to force Nat to do anything, to let him be.  They were anxious about Nat being unhappy.  They felt that he was “doing great.”  I felt that there was so much more he could be doing.  I’m supposed to think that way, to always have expectations of him.  But those around me were trying to get me to see that what he was doing was actually very good; he was there, he was happy.

So which is it?  Am I to put more demands on him, to try to bring him more “up to speed?”  Am I still working under the model that I have to push him Closer to Normal?  Or is the goal Closer to Fine?

I have a piece in today’s New York Times online, Lisa Belkin’s Motherlode blog!

Finally, Ned gave me the Thanksgiving pictures off his camera! Better late than never.

With Ned and with my boys I’m truly home, but it’s taken a very long time for me to understand why this particular group of beings is my home.  What makes “home,” that place where you can rest, and just be?

Nat just got home, and before long I could hear the hum of the tv, and so I went in and asked him what he had chosen.  “Cawry,” he said, referring to our very very old Weston Woods video of Corduroy.

Corduroy was the very first book Nat liked, the very first character that engaged him, way back at 18 months.  He would sit in Ned’s lap, in my lap, listen rapt, thumb in mouth, and when the story was over, he’d close the book, take it out of my hand and then put it back into my hand, saying, “um, um, um.”  I knew he was asking me to read it again.  Over and over we’d read it.

The story goes like this:  Corduroy is a bear in green corduroy overalls.  Unbeknown to him, one of his shoulder straps is missing a button.  A little girl, Lisa, wants to buy him but her tired mom needs to get home, and so she points out this imperfection, hoping to discourage Lisa.  Corduroy watches them go, sadly, and notices for the first time in his life that he has a flaw.  Mystified, but not given to too much reflection, Corduroy sets off into the department store once it is closed, in search of his button.

Of course, Corduroy is not going to find his button anywhere in the store, and we know that from the start.  Even if he were to find a button (and indeed he tries to pull one off of a mattress in the bedding department), how would he attach it to himself?  He has stuffed bear paws!  Yet look he must, because that is our nature:  to be complete.

I do wonder what it is that drew Little Baby Nat to this story, and what makes him still love it today, at 21.  Because there is quite a bit of projection, imagination, and intuition in my relationship with Nat, I found myself thinking about this today.  I allow myself this kind of exercise, not just with Nat, but with all my guys, because imagining their inner world helps me connect to them.  Maybe there’s some fiction to it, but who’s to say?

In the end, Lisa comes back to buy him, missing button and all.  The last picture shows her sitting with him on her lap and sewing on a new button.  “I like you the way you are,” Lisa says, “But you’ll be more comfortable with a button.”

I could say a lot about how perhaps Nat empathizes with Corduroy, who knows he is not like everyone else, and so must try extra hard to fix that, in order to get what he wants. I could say that Nat enjoys Corduroy’s journey of discovery, his lovable mishaps.  His finally being understood.  But I think that what Nat may love best about watching Corduroy is the feeling that he is home.

Nat walks into the livingroom this morning, announcing himself in his own language, dressed in his signature yellow, shining like the sun.  I am flooded by de-light.  “Natty!”  I say.  “You’re so cute!”  Nat’s eyebrows go way up, as if he is concentrating really hard on the meaning of cute.

Ned and I agree that indeed, he is cute.  But then!  Oh shit!  A flash, a split second of something, sharp, ugly, and true, that has wedged itself like a splinter into my full, fleshy happiness and whispers:  –You’re treating him like a baby.

I can’t help it, I reply.  He’s cute.  He’s adorable.

-He’s 21, says the splinter.

I know.  But he is an unusual 21.  Besides, if I see him as truly 21, all 21, I feel a pang that I don’t want to feel.

-And that is?

Imagine what he might have been like by now.

-You have no idea.  This is who he is.

Well… I look at Max and Ben…

I don’t dare finish the thought.

-You are a terrible person, says the splinter. They are who they are, but who are you to say that Nat should have been someone else?  It’s vanity.  It’s chutspah.  It’s hubris.

I guess, well, since we’re talking about it — I look at Ned’s and my genes.  Or I think about what they contain.  The dark and light of Ben’s art.  The round warmth of Max’s.  Their lightning epiphanies, realizations about — everything.  The way they can do math (that’s Ned’s genes).  The way they laugh at my jokes — or the way they hate them.  The million different things they do and become and once were.

-And what does that have to do with Nat?  Isn’t he a million different things and going to become even more?

Yes!  But the boys are so close, genetically.

-I know what you’re going to ask.  Go ahead.  It’s okay to wonder. It’s okay to think it.

WHY did things end up so different?  Why?

-There is no ‘why.’  There is only what is. There is only who he is.  Exactly who he is.

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I’m going out.  I’m going to ride.

-In this weather?

You’re just a splinter!  You can’t know what it’s like!

I know.  Because I was once a tree.  I could have been standing proud in a park, giving shade, dropping orange leaves in the fall.  But instead, I am just a metaphor for your conscience.

Now I feel my smile coming back.  The splinter floats free, as splinters do.  I bundle up and I ride.  The air is so cold, but I am dressed just right.  My trunk, legs, and arms are warm.  I only feel a few slashes of the wind here and there, and it is only cold like peppermint.  Every now and then there is an ache, a burning and a strain, a pop of knee, a lumbar pressure.  There is always, always, a little tiny bit of pain, but it’s nothing compared to the pleasure of just being here, exactly this way.  Once again, I understand.

Look who was visiting his mom for Thanksgiving! Max’s friend Yaz spotted Conan in their elementary schoolplayground with his kids, and they went and got a pic with him!

“Sweet soul in a little cat body,” that’s what my sister Laura used to say about her cat Pushkin.  Pushkin was the first cat I ever really knew; he was Laura’s first pet in her grown-up life, acquired when she moved off to medical school in Rochester — “Ra-owr-Chester,” she called it, as if it were Pushkin saying it.  Pushkin was one of those black and white cats, whose markings formed a black cardigan buttoned down his front, and a perfect little black mustache under his nose.  He was a tiny Russian aristocrat, as dignified as he was cute.  He was lethal — I once saw him bring down a bird flying low over a garden — but hilariously adorable.

Laura getting Pushkin was a new phase for us.  He was adult life.  She had just gone and adopted him; I don’t know what her thought process was, but getting him was a statement of independence.  Younger sister that I was, I did not have nearly the same sense of independence — at least I didn’t think I did — and so I was in awe of the entire cat-acquisition-and-raising process.  How did she know what to do?  I guess she read stuff about it.   She knew to have the litter box and the food bowl.  But what else were you supposed to do?  How did you know it was okay?

I think perhaps a lot of people go into adulthood less consciously than I do and so, like Laura, maybe they just do these things without worrying about “am I doing it right?”  Until they finally meet their match, and then they have some thinking to do.  Pushkin was not Laura’s match, however.  Soon after she had him, she got Sweet Pea, who was all black, and my favorite cat in life so far.  Sweet Pea had a dumb look, because you could not really see his face, other than his always wide eyes — the mouth and nose were lost in the darkness.  Sweet Pea looked unintelligent, not smart like Pushkin, but Sweet Pea could talk.  He could communicate with his loud, enthusiastic purr and his expressive meows.  One famous family story is that Laura was upstairs and Sweet Pea was downstairs, looking for her.  Meowing, ra-owing.  Finally she heard him say, “Ra-er are you?”  And she replied, “I’m up here, Sweet Pea!”  And Sweet Pea came running upstairs to her.

Laura had her cats and then I had my baby.  I think she may have felt, perhaps unconsciously, the same way about my having Nat that I had about Pushkin, like how do you know what to do?  I remember feeling a secret small smugness that he was mine, that I had the rights to him, that it was up to me.  I think she knew about that because we once had a terrible, bloody fight over him, over who got to sit next to him in the back seat.  It blew up into the ugliest episode in our life together.  I wonder what we were really fighting about.  We were always so close.  Sometimes it felt like we were a unit, a pair.  We were not twins, but we were 19 months apart, in a Family of Four that did everything together, intensely.  She and I fought like cats and cats growing up, but also shared the exact same sense of humor and perceptions of many things.

Laura helped me make my Labor Tape, the cassette I was supposed to listen to while giving birth to Nat — I was trying to have the birth my way, but it turns out that’s only for hamburgers — and to this day those songs bring back a satisfyingly complicated blend of emotions.  Laura also attended me during Nat’s birth, with Ned on my other side.  Laura and Ned had become close during our college days, so much so that even they fought sometimes, which back then was a true sign of closeness for us, whether you could have awful fights and then totally make up moments later.

Laura was there that day when Nat first became truly alert, a few days after his birth.  We laughed and laughed over it, how his eyes were just crazy-wide open.  There are so many pictures of her playing with him and as the years go by it is hard to tell if some of those pics are of her or of me.  Recently she confessed that she used to go into his room sometimes when he was sleeping and wake him up so we could play with him some more.  Every phase of his life is marked for me with memories intersected with Laura.

There was that terrible big secret we shared, too:  what was going on with Nat?  We didn’t discuss the possibility that anything was wrong.  Our lives had not yet wandered out of that protective circle of our childhood.  We had our fears, sure, like all children, but in the morning you would wake up.  I would bring all of my questions to her about his development, as if she were a sage.  She was merely doing her big sister thing, reassuring me without really knowing anything, but just confident that all was well based on her enormous love for him (and me)  Why wouldn’t everything be well?  It always had been!  That was childhood.  That was how it went as adulthood began, too, with Pushkin.  You moved into new phases, you didn’t have to think about it so much.

Ned and I just finished our will and special needs trust last week — about time, considering Nat is now 21.  We had to figure out trustees, guardians, all of those soul-grinding questions, those scenarios with Ned and I being no longer here.  All those impossible answers.  But the answer for us was pretty clear:  Laura.  Laura who now has four cats she rescued, two amazing children, and who tears up with pride over every single thing Nat does.  Soon after he was born, and her cats were still young, she referred to Nat as a “Sweet little soul in a little Nat body,” and we laughed.  She still does, minus the “little.”  When I told her about the will, she said, “Of course,” just like I knew she would.