I had a dream last night that was one weird thing after another.  Inexplicable images next to each other.  First there were cars pulled over to the side of the rode.  Then there was this huge colorful Arabian-style octagonal Doumbek-like building that shot up through the ground.  Out of it came a gigantic cobra, several stories high.  People were running out of the building and were tiny in comparison, but no one was actually afraid.  After a bit, I realized the cobra was kind of like Plasti-goop — people my age will remember the ThingMaker by Mattel, which was a tiny stovetop for kids.  You plugged it in and it got bright orange with actual heat and you filled a metal mold with Plasti-goop and cooked it on the stovetop.  You mushed it with your fingertip to test when it was done.  Sometimes you got burned.  You took these tongs that fit into the metal mold and clipped on the back, and plunged the whole mess into a plastic tray of cold water.  Once it was cooled, you pried a rubbery monster out of it.  This gigantic cobra in my dream was one of these.

Anyway, after I saw that the cobra was kind of not that scary, I was in my parents’ playroom by the garage door — that’s the door everyone realizes is actually the door you use for their house, not the fancy double doors in the front.  In through the garage door comes this young black smooth-skinned teenager, and I felt a burst of love, but I didn’t know if he was a guy or a girl.  I just knew she was my child, so I said, “Look!  It’s my girl, home from college!”

He looked at me, realizing I did not know him at all, and smiled sympathetically. “Who am I, now, Mom?”

Embarrassed, I had to then act like I’d made a silly mistake, but the fact was, I didn’t know him at all, even though I loved him.

This dream took place sometime after 2a.m. Max had come home at 1:30a.m., for the first home visit from college.  His stupid bus was so late that he got home 4 hours later than he was supposed to.  But Ned and I sat with him, dead tired, and looked and listened.  This cool dude was telling us about an incredible acting class, a scriptwriting class, a sound production class, and a hapless English 101 class.  It was trippy hearing him talk about the things he was learning, the stuff Ned and I did not know about — Stanislavski school of acting, Misner, Studio — the equipment he is responsible for in the sound class, the convoluted assignments in his English class (same title as my class, “The Essay,” but taught, in my opinion, bass-ackwardly.)

He loves his dorm.  He said that theirs is the best floor in the dorm building, and that there is now a song about a roommate who got sick drunk the first week of school.  He said that he’s a year older than everyone and it’s kinda weird, but cool (he took a gap year).  Everyone’s friends.  He spends his food money on bagels, bagels, bagels.  His 4 roommates — who are from all over the world — didn’t know you could freeze them for later.

So handsome, tall, and soft-spoken, Max stood there in our kitchen talking as if he’d never left but for me it was like a huge explosion in my life, like the dream structure that burst out of the ground, forbidding, gorgeous, mysterious.  Nothing to fear, exactly, except that this is a whole new person in my life, in some ways unrecognizable.  It’s funny to me, because when Max was born and I first looked down at his square newborn face, I said — with delight — “who are you?”  And I meant it literally, not spiritually.  He did not look the way I expected he would.  I guess he was supposed to look like my baby — in other words, Nat.  Instead, he looked like my mom (her nose) and somehow like a boy I’d grown up with. I laughed at his silly new face.  But the next time I looked at him, he was Max, completely brand new and familiar at the same time.

Lying in bed last night, my remaining thoughts were about Nat.  I was thinking about his imminent graduation and wondering how he would feel once he learns of it.  This subject has weighed heavily on my mind because the idea of revealing this news scares me.  Traditionally, Nat has become seriously anxious in the weeks leading up to a major event, and this one — no more school — is perhaps the biggest he’s ever faced.  Or at least it is right up there with moving into the school residence.

Nat’s anticipation has always set him off.  Whether for a beloved upcoming event, like a vacation on Cape Cod, or a strange new one, like going to sleepaway camp, we have often seen an increase in nervousness.  His responses range from fast stomping around the house, to repeating questions nonstop about the streetlights or other people’s breakfast choices, to jumping up and down, screaming and biting his own arm.  My poor darling.  But I guess in some ways that is no less self-destructive than when I gorge on ice cream until I’m sick, during my periods of deep depression, or go to bed in the middle of the day, or blow off a hundred commitments to people.

Still, we have become very careful about how and when to bring up changes and transitions.  I do not want to have to go back to times of fearing Nat — I used to call it Siege — and I do not want to traumatize Ben again.  I don’t ever again want to see Ben hiding under a table from his brother, unless he is playing Hide and Seek.  I don’t want him placating Nat, to keep him from exploding, even if we order him not to.

I don’t want any of that.  But just yesterday I was talking to a new friend, the mother of one of Nat’s (hopefully) future roommates.  “We’ve definitely seen some regression since we’ve told him he’s going to be moving out, an increase in some really challenging behaviors in J,” M said, and she described some of what they’ve been seeing.  I thought to myself, Yeah, Nat will do the very same thing, once we tell him.  I have been figuring we would tell him after we have had a meeting with the entire transition team, on the 12th, when we will plan Nat’s final month of school.  I have been waiting for the staff to tell me what they usually do and say (types of Social Stories, calendars, trips to the Day Program, upcoming graduation celebration and party).

But lying in my dark bedroom, I thought of J and his many many questions, and the stress that they all must be feeling, simply because J knows.  And suddenly I thought:  Doesn’t Nat deserve to know, too?  Doesn’t he deserve to have time to get used to the idea?  Even — and this is strange, but I feel it is important somehow — even the right to get really anxious about it?  I’ve been wanting to tell him about what I’ve been working on for him:  the day program, the roommates, the apartment — but no one has given me the go ahead.  I’ve been waiting for A Sign.

However innocent and sweet Nat appears — and in fact is — he is also a man of 21, and very astute.  For a person with limited language, he has compensated with becoming very sensitive to our nuanced voices, whispers, mood shifts, and even the way we speak in code around him.  We refer to Nat as “Eldest” when we need to discuss him in front of him.

But somehow I don’t think he is fooled.  Just the other day I was starting to say something about his social group; I did not even say social group.  I wasn’t speaking to Nat, either.  I merely said, “I wonder if those guys are going to the –” I didn’t even finish my thought.  I was wondering if those social group guys were going to the Topsfield Fair.  (Nat was not going; I felt afraid that he would wander from the group there.  I would be sending him with a different group, where the chaperones were more experienced.)

Nat froze.  Oh boy, was he listening.  He was listening with every fiber of his being, every neuron was reaching its tangled ganglia towards me, eking out meaning from the very molecules in the words coming out of my mouth.  I saw him in the rear view mirror, his wide, tilted blue eyes filled with questions, just like when he was a baby looking up at me from that back seat. (If you looked at the eyes and blond bangs, and blocked out the lower face with the beard stubble and man’s jaw, it was the same exact face.)  And I saw that he is still so dependent on me for information; he hangs on what I say because I have introduced him to much of the world.  Not only that, I am the one who figured out, so long ago, how to explain things to him to reduce his anxiety.  As his mom, I had to major in Natology, and get an A every time, or he would be scared or sad.  It has been my job to prevent that.

Or so I’ve thought.  Last night I couldn’t sleep because I realized that no, it is not my job to prevent that.  Protect him, yes; but my job is also to give him the skills and experience to protect himself.  The whole reason you have school and then independence is so that your babies can eventually survive — on their own, to whatever degree possible.  Because you won’t be there forever. But also because it is their right, their right to live an entire life.  J was struggling, but he was learning and growing, and his mom was there to support and explain.  But J was doing what he needed to do.  Shouldn’t Nat have that same opportunity?

So I couldn’t stand it any longer.  Today, driving him back to The House (the school residence), Ned and I were talking — in code — about the graduation and party.  Suddenly I blurted, “You know, Nat, you will be leaving school soon.  Right around your birthday.”

“Yes,” Nat said, snapping to attention, listening in that deeply neuro-aware way.

“So, in November, you won’t have school anymore.  You’ll graduate.  We’ll have a party.  And you’ll come home to live.”  I stopped there, because that was all I have for now.  As soon as the home and roommates are completely certain, as soon as I have a building to show him, I will tell him about that move-out.  For now, it was the leaving-school concept that I felt he had to hear about, at last.

“And Nat, we’ll talk about it a lot more, okay?  So it’s not happening yet, but in November, okay?”

“Okay.”

There was that face in the mirror again, so vulnerable, so young.  But in a few moments, he went right back to his quiet self-talking.  So darling, so innocent!  And yet also, so ready.

Here are two excellent resources, to help people maximize their SSI and SSDI benefits:  BenePlan, 1-877-937-9675, and Project Impact, 1-800-734-7475.  This helpful information comes courtesy of Cathy Boyle of Autism Housing Pathways, a non profit that is going to do great things for the future of Massachusetts adults with autism, who have turned 22.  While you are at the AHP site, please take the time to fill out the housing survey.

We celebrated Rosh Ha Shanah tonight, with family in Connecticut.  Max, who now attends NYU, had some commitments and could not make it.  It was the first year we had the holiday without him.  But when we got home, we had this picture waiting for us!

It’s Rosh Ha Shanah in a freshman dorm room!

“Well, that was school.  I learned a lot.” This is what Ned once imagined Nat might be thinking as he rode home from his very first day of school, back in 1993.  The school was located in a junior college in the adjacent town; it was a mixed-disability class, as well as having typically developing children.  Ned told me that he had no idea what Nat might make of school — it was such a big concept to understand for a three year old, especially one with “Expressive Language Disorder and Autistic-Like Symptoms.” (This was his very first diagnosis; I almost like its quaint and evasive character, in the way that I can look back on almost anything from that long ago with fondness:  awww, such a little innocent naive diagnosis.)  Even though we prepared him with a Nat Book (known to most people as Social Stories, but the Nat Books were invented by me; I did not know about Social Stories back then) complete with pictures of the teachers, classroom, building, and bus, Ned wondered if Nat might think that “school” was just that one day.

Ned stayed hidden in the hallway those first few days of Nat’s preschool.  He hid so that Nat could forget about him and get used to the teachers there.  He stayed a long time, listening to Nat cry.  It broke his heart, but he knew that they both had to get through it.  Plus those first few days were just for an hour or two, of transition, so Ned recently realized that he must have been staying in the corridor for a while because the schoolday was so short.

“Debi [the teacher] finally got Nat to look at her and stop crying, by quoting the commercial from the MassMillions Lottery,” Ned reminded me of this fact recently.  I had forgotten that Nat was entranced by the lottery commercials back then, and he got the words “MassMillions” mixed up with “Maximillian” in that Nat way of his that was wrong yet made sense.  “And the winning Maximillian number is…”  Nat has always had terrific teachers.  Except for one or two bad apples, the entire bunch was pretty much wonderful.

Will, Nat’s current teacher, called me the other day to set up a meeting so we can discuss the transition process for Nat’s graduation from school.  The school is always so thoughtful and mindful of process.  I remember how terrific they were getting Nat accustomed to the idea of living in The Residence.  They used souped-up versions of the Nat Books, they used countdown calendars, they set up visits and dinners to The House.  Nat was comfortable with the people and the place by the time move-in came.

His last day will be November 11, 4 days before he turns 22.  We chose this day because it is a Friday, and Fridays make the most sense to be end days.  We can then have his ceremony and party that afternoon.  He will most likely spend his first days of Autistic Adulthood living with us at home, while we get the Group Apartment ready.  We have settled on a 3-roommate group home in an apartment nearby.  We have two other young men that we are hoping will become Nat’s roommates; their parents have to figure out how they themselves can prepare for this big change, as well as their sons.  Our service provider is about to start recruiting a live-in caregiver.  We have chosen Nat’s Day Program, in a nearby town.  This program has many ties with local businesses like Shaws Supermarket, and we imagine Nat will have a lot of worthwhile stuff to do with his time there.  I’m pretty sure the day program would likely begin the following Monday, November 14.  Unless we decide to take Nat on a little vacation first, to celebrate his achievements.

Tonight Ned and I were talking about Nat’s imminent graduation, because we realized it was the same day as a friend’s annual dance party.  We figure we can do both.  One year we brought Nat to the dance party, and he loved it, of course.  The way he dances is to hop straight up and down.  “I wonder what Nat’s going to think that day,” Ned said.  He paused a beat and then said, “Well, that was school.  I learned a lot.”

We both laughed.

Very frequently I write about the federal government’s Medicaid and SSI programs, including latest news I take from sscardreplacement.com and similar Social Security issues sources.  I am passionately supportive of these social programs, but I don’t often show you why.  What, exactly does a program like SSI (Supplemental Security Income) do for someone like Nat, with a significant disability?  The government’s own website states: “The Supplemental Security Income (SSI) program pays benefits to disabled adults and children who have limited income and resources.”

Limited income and resources.  It is no news that people with developmental disabilities are seriously under-employed.  Seriously.  Here is what Dr. Peter Gerhardt, Autism Guru, has found in his 30 years of work in the field of autism adulthood & transition:  “67% of families surveyed had no knowledge of available transition programs and settings; 83% relied on family members as their primary source of transition planning assistance; and 78% were unfamiliar with agencies or professionals that might assist in job development; only 19% of individuals with autism were employed at the time of the survey with 74% of those employed working less than 20 hours per week; 85% still lived with parents, siblings, or older relatives.”

Someone like Nat, if it came down to it, could live with his family, of course.  But the last time we tried that, Nat became very unstable and anxious, which led to outbursts of aggression and screaming.  Now, I love that guy with every cell in my body.  But I also love the safety of my family and I have found that other settings support him better. I was lucky.  I had options, mostly because I live in Massachusetts, which has some of the better benefits and supports for autism.  And mostly because I have the energy and time to educate myself about programs for Nat.  Many many others do not.

What about the multitude of others who do not have a family, or whose family has to spend significant resources getting help for their disabled relative?  Or who don’t have those resources, even?  A few months ago, I went to an Autism Focus Group that was all about developing recommendations.  Most of the folks in this group were adults with autism.  They were living on very meager incomes.  Many did not have cars.  Many did not have jobs.  Many lived with their aging parents.  One lovely and socially skilled young woman was trying desperately to find a job, asking me for any help I could give with my networks.

Usually the SSI check per month, for someone developmentally disabled, is around $700.  Your food and rent comes out of that and all else comes out of that.  You probably apply for food stamps, and also use whatever public transportation is available.  You also apply for the disabled person’s discounts that are offered in various places. That is, if you know that you have to apply, and if you are capable.  Perhaps your guardian will know.  Perhaps not.

Oh, and by the way, if you are on SSI, you are not allowed to save up the checks.  You can’t have more than $2,000 in your bank account at any time.  You need that money, every last bit of it.

So?  Get a freakin’ job!

This is the refrain of the ignorant.  Remember, you can’t have more than $2000 at any time.  If you earn more, you lose SSI, but you may qualify for a different program, SSDI, which I don’t know enough about to cover here.  And as for work, remember the unemployment problems in America.  We all know about the unemployment rate these days.  We all know about how any family struggles if they are jobless.  What do you think happens to the jobless who have serious or even moderate developmental disabilities?  The higher-functioning the individual, the higher the expectations; at the same time, they are eligible for fewer programs than someone like Nat.  They are caught in the middle of needing to work but not quite having the social wherewithal to convince an employer.  It is an employer’s market these days, too.

Having SSI qualifies you for Medicaid, which pays for insurance and other programs, like Day Habilitation.  DayHabs are usually the one entitlement these adults have.  They have a place to go from 9-3, M-F.  DayHabs have activities organized, and some even have the resources to go on outings and do volunteer work.  But many don’t.  Many rely on sheltered work within the facility.  They also rely on television.  And still, they are lucky to have that, to have professionals to care for their needs during those hours.  Medicaid pays for that.

How do these folks get caregivers and staff in their homes?

Medicaid has a program called Adult Foster Care.  If you qualify — and you need to demonstrate severe daily living skill deficits — you might be able to receive $9000-$18,000 a year which must go to the live-in caregiver.  If your disability is that severe, do you think it will be easy to find a qualified caregiver who wants to live with you, and earn such a low salary for such a demanding job?

Again, you are incredibly lucky if you qualify for that.  Many do not.  And many do not even know about it (see Dr. Gerhardt’s research, above).

How about housing?  Where do you live, on such a limited income?  Thankfully, this country has the Mobile Section 8 program that subsidizes your housing, which is utterly necessary in this day and age of expensive real estate and rents.  But here’s the rub:  there are years-long waiting lists for Section 8, and the disabled are competing with homeless families and seniors!

How about Project-based Section 8?  You can only get those if you are working with a service provider who can buy the house in the first place, or with a landlord who is willing to be a designated Section 8 landlord.  Or you buy the place yourself.  But remember what your monthly income is…

So?  It’s not my responsibility!  Let private organizations help them instead!  Government is too big!

This is what many in the Tea Party and other groups say.  It is simplistic.  We all benefit from the large military and roads.  We all benefit from federally protected banks, public education.  Those are big government programs, too.  You can’t have it both ways.  And as for relying on the private sector and charitable institutions, you have to think this through:  If private organizations could do it, they would, but how can you if you have to rely on the ups and downs of individuals’ ability to donate, in this economy?  And what if one organization makes rules that are skewed to favor some and not others?

But there’s so much waste in those social programs!

Really?  Do you know how much waste there is?  Where are the statistics and studies on that?  Show me how a typical DayHab wastes its money.  Show me how easy it is to get SSI, if you don’t meet the requirements.  and do you know how scrupulously they monitor your bank account, month after month?  I know this as Nat’s guardian, from personal experience, that they look very closely.

We all need to look closely at the sweeping generalizations we hear from politicians.  You can go and see the good of these programs with your own eyes.  Find a DayHab near you and visit it.  Talk to an adult living on SSI, and find out the facts.  It is possible to piece together a life with these programs and help from family, but without that, you have lives falling to pieces.

The Sunday September 18 New York Times ran a beautiful, accurate piece on being autistic and making your way in the adult world.  I expect we’ll see a lot more of this kind of piece in the years to come.  The article took my breath away because, of course, there are so many similarities to Nat and his friends’ lives.  The wave is a-comin’…  this country had better learn how to swim.  And that means holding close to the programs that make it possible for adults with developmental disabilities like autism to contribute to society rather than talking to themselves on street corners (not that there’s anything wrong with that, unless it means you are indigent and unsafe).  Medicaid and SSI and Social Security are not programs to be toyed with; just consider what else would happen to these vulnerable but viable human beings without them.

We have a generation of young disabled people who have grown up with education, therapy, medication, inclusion, and optimism.  Who knows what they will be able to do for the world if they can lean on the rest of us for a little balance.

Max has gone off to college.  I am missing Max in a soft way, a quiet but constant awareness that he’s not here.  For the past year — his gap year — he was here so much, even though he was also away so much, using his newly-earned driver’s license, hanging out at with his girlfriend (also not yet in college) and friends who went to college nearby.  He was simply part of the family, though in a nineteen-year-old’s undependable way.  I never knew when there would be only the three of us for dinner (Ned, Ben, and me) or six for dinner (Max, his girlfriend Hannah, and his friends Yaz and sometimes Sam).  Sometimes — when Nat was also home —  I had to tell Max that any more than one friend, they were on their own.  An impromptu dinner for seven, when two of those people are vegetarians?  I don’t think so.

My feeling of missing Max is compatible with my feeling of Max, his entire life.  He came along when I didn’t know Nat was autistic, but I did know that things were not going well with my firstborn.  Those days I thought that the problem was me.  It made sense to me that I would not have been a very good mother; I hadn’t done a whole lot yet in my life except marry and get a master’s degree.  The only books I’d written were unpublished novels that I knew were not very good.  I hadn’t held any real jobs and it seemed unlikely that I would in the next decade.   I had not separated psychologically all that much from my parents and so I lived in a kind of emotional dependence on them merged with a teenage rebellion/angst even in my late twenties.  Predictably, this mess ran over into my relationship with my sister, with whom I would have bloody, visceral fights from time to time.

I was so uncomfortable in my own body that it was pretty much impossible to be comfortable anywhere.  Two months after Nat was born, we moved into a crappy but fairly charming little house in a shitty part of a suburb of Cambridge.  I spent the next year of his life figuring out that we had made a mistake leaving my beloved Brookline, and trying to convince Ned of this.  I also spent that year figuring out that something was wrong with my beloved Nat and trying to convince Ned of this.

Both were exceedingly difficult to come to terms with.  Who wants to move out of their first house only a few weeks after moving in?  Who in the world examines their new baby over and over again, obsessing about every nuance, interaction, or lack thereof?  But I, a nascent obsessive compulsive, spent my first years of motherhood in a miserable state of knowing something but not knowing it. Knowing something but not having the credibility because I lacked confidence and experience, because my husband and parents didn’t know how to deal with this progressively painful situation.  I was Cassandra, I was the prophet of doom, but I had no street cred with my loved ones.  So the pain just bubbled and boiled.  Susan was unhappy, Nat was an eccentric baby, why couldn’t she get fixed and enjoy her life?

She could not.  But when Max came along, something changed.  There was a lightening, a softening for the first time.  This easygoing baby responded to me with wise eyes that believed in me.  He depended on me, and I mothered him, and that was the deal.  Simple, straightforward.   This relationship gave me my first experience of confidence as an adult, though I didn’t know it at the time.

We say that we shouldn’t compare our children, but I think we should.  This is the way that we learn about childhood development.  But we should not compare our children so as to judge the value of one against the other.  In my heart, Nat occupied so much space, and yet, there was just as much room for Max; this seemed wondrous to me.  There was no comparison, only learning.   So much hurt about Nat but did not hurt about Max and I needed to know why.  One boy informed me about the other. I could see the miracle of normal development in Max and I rejoiced in the beauty of even the most mundane things with Max, such as problems with sharing, getting muddy from the rain, getting him eating vegetables.  And then, o joy, there were the most amazing things, such as Max himself:  his mind, his quick intelligence, his fun.  The way he spoke like Woodstock, in all exclamation points.

They say that happiness is the absence of pain, like when you are sick and finally you are better, how beautiful that feels. One aspect of my happiness in Max will always be about the relief of normal development, the absence of fear.  But the other aspect of my joy in Max is purely about Max, my calm and confident baby who grew into this calm, confident, beautiful young man.  His leaving for college feels right and timely.  His absence here is omnipresent.  Everywhere I look I think about Max, how he would come right into the livingroom with us as soon as his friends went home.  How he would open his laptop like a treasure chest and pull out cool things to share with us. How every once in a while he would start talking to me, this quiet smiling son, releasing torrents of thought and information so that I’d have to grab hold, like to a branch in a rushing river, but at the same time  hope that it wouldn’t stop coming at me.

I don’t want to cry, I want to sigh.  I want to breathe and think and look around and picture him, constantly, in his new life on his own without the friends, girlfriend, effluvia of his family.  What is that boy like in the world out there?  I feel a bit of maternal worry but mostly just a missing him — with pride.

For Therese

It’s a funny thing about autism dogma.  Those under the sway of one kind or another are almost evangelical in their beliefs.  They see all autism success (or failure) in terms of how closely one has followed the True Path.  I think that I detest dogmatic thinking more than most dogmas themselves.  I detest dogmatists and yet sometimes secretly am jealous over their certainty.  I rarely feel certainty about anything.  I experience reality and relationships as ephemeral, not static.  I search for solidity but rarely find it.  I’d be a terrible politician, because I flip-flop constantly, both in mood and belief.  As a Libra, (and dedicated flake) I see many sides to a situation or person at once.  And seeing them, I must acknowledge them.

I remember when I was much younger and I pursued the belief that vaccines cause autism.  I went back in time and I remembered the day I had sat Nat on the examining table in Dr. Kerbel’s office while he got his MMR shot.  Nat had looked up at us, his eyes blinking back surprised tears, and he had smiled.  I remember thinking in the years after that, “Was that the moment It happened?”  And saying to Ned, “If indeed the MMR caused Nat’s autism, I want to kill myself.”  For me, the response was never to blame pharmaceuticals, doctors, anyone else but myself.  I was his mother and I let him get that shot.  At times I have felt jealous about the anti-vax certainty and anger, because I never felt any of that.  It would have been a relief to have felt that, I think.  Then I wouldn’t have had to feel that terrible laceration of responsibility.

But time passed and I could not ignore the research, the articles, the discussion with doctors I respect.  And I could never get past my own inability to believe in one answer and stick with it.  I have never even been able to make The Vaccine Controversy be my main autism theme, my Issue, because I can’t even sustain enough passion or interest in it.  And also, there were too many other factors I could not deny, namely, that Nat had always seemed different somehow, even as a newborn.  Wistful, my grandma called him.  Vistful.

Inevitably, my slippery mind flops from the question of etiology and blame, to something else, or just back to Nat, and Nat alone.

So it’s Nat — and my own lack of convictions and theories and favored approaches — that drives me.  Nat drives me, and also, the people in his life who have made a difference.  It is ironic that Nat has attended an ABA school for nearly eleven years, given how my perceptions fluctuate.  What is more ironic is the reason we have stuck with the school:  the diversely talented individuals they hire there.  While Nat’s school prides itself on strict ABA to the point where they believe that their intensive teacher training renders each teacher the same, what I love about the school is that each teacher is gloriously different.  The ABA-ists want to see their success as being about metallic gray consistency, where “a staff” is interchangeable with another, and that progress is about carefully measured antecedents and consequences to a given behavior.  But what I’ve seen over the years is that consistency is overrated.  I know that, because I’m often inconsistent.  And where years ago an ABA teacher commented that Nat would only do as well as the efforts I made to be consistently ABA-ic, I find as an older mother that it is Nat’s flexibility and my spontaneity that have wrought some of the best aspects of our life together.  Yes, of course it would be great if I could more frequently create a schedule and stick to it, follow the same system of rewards the school uses.  Nat might be less anxious if I did that.

But because Nat has known fluctuation in his mother, he has become a person who is sensitive to moods in others.  He knows every inflection of my voice, every shadow that passes over my eyes.

The best teachers Nat has ever had know this about him.  They know when to gently push aside the curtain of their training and simply pat him on the shoulder.  They lift him out of the constricting lines of the data graph and hold him in their hands, just Nat.  He does this because that teacher spoke harshly to him.  He did that because that person disregarded him.  He reacted this way because he did use his words but you still did not honor them.  The best teachers do not adhere to one solid principle of pedagogy; they get to know the student and respond accordingly.

Nat has had more than his share of wonderful teachers, at his current school and previously.  Pretty much all of them have been terrific, except for that handful at the Unnamed Collaborative, when he was 10, the place that traumatized me more than it did him, and turned me into Mrs. Jumbo, Dumbo’s Mad Elephant Mom.

Anyway, this is a long-winded way of saying that probably One of The Best teachers Nat has ever had,  humane, creative, loving, with whom I trusted him on his last trip to Colorado:  Therese.  Is leaving the school.  She is moving on to the public schools.  We will miss her so much.  I could not begin to thank her for the love and spontaneity and creativity she showed Nat.  My feelings of love and gratitude to Therese are one of the unwavering truths in an otherwise changeable life.

My so-called strength is deserting me.  I hate this, I hate this.  There is no escaping my terrible sadness and fear for Nat’s future.  Yes, yes, he is luckier than some because he does get some funding.  We don’t know how much or where he’ll live or with whom or whom the staff will be but we do know he’s eligible for residential care.  But still, for residential care, there is always a catch.

Nat is between two worlds; he always has been.  Neither “high-functioning” or “low,”  it is hard to find a match for him, just as it was hard to find a school program.  There is always a fork in the road, between the upper levels who are mostly verbal and can make conversation and be left alone maybe a little or a lot, and the so-called lower levels who appear disengaged and have a lot of trouble with communication and safety. In school we had to make the choice between academic programs and pragmatics.  We had to risk regression with peers who were more challenging or we had to risk his anxiety and aggression with a more demanding curriculum and fewer support staff.

Nothing for just plain Nat.  How often I have wanted to just pull him out of the world and teach him myself.  But what kind of life would that be for either of us?  I need to be out in the world and he does, too.  He loves being around people, as long as he doesn’t have to talk to them, probably more than I do.  I can’t deny him that.

The group home project is a bit frail at the moment.  We are not at all sure we have anyone for Nat in November, when he needs it.  There is talk of bringing Nat home for a few months, with support.  But that makes me scared.  Will he become anxious with the changes and regress and aggress?  Will Ben pay the price?  Will we even be able to find adequate staff once he does have a cohort?

Why does the state set such low pay rates for caregivers?  How the fuck does that make any sense?  And if they do that, why can’t I legally supplement their salaries and pay them more?  It is a system that perpetuates low-level life styles, mostly maintenance, because the staff are disengaged.  They need to be paid better, like anyone else.  What is motivating them?  Coming to work to restrain people and clean them up?  No wonder there is so much “van therapy;” it is probably a relief to pile them into the van and get them seat-belted and deposit them at DayHab or a mall.  God damn it.

Oh, I’m sorry to anger or depress you, my dear readers.  These are my fears.  They are your fears, too.  They are the worst I can think of.  Oh no, wait, there is worse.  I could live in a country like Darfur or something.  God forbid.  This fucking world.

I know of a young man who would be a perfect match for Nat but he doesn’t have funding.  The only funding available for staff for Nat and this guy is very very low.  So to put them together means risking a disengaged caregiver.

Who can help us?  All I see is uncertainty stretching ahead for my dear son.  Sons.  Me.  Us.  Sure, yes, life is always uncertain, red in tooth and claw.  But fucking hell I have tried so hard to make things work for him and now there is so much I have to leave to chance.

plus Max is leaving on Sunday.

Just finished Left Neglected by Lisa Genova.  Genova seems to be well-versed in brain disorders; I think she studied neuroscience at Harvard.  Left Neglected is about a disability called “Left Neglect” that can result from a right brain trauma, in which the patient misses seeing items on the left.  It is hard for me to imagine that, but Genova draws a believable portait of Sarah, the main character, who is badly injured in a car accident (using the cell phone while driving in the rain, let that be a warning!).  Sarah is (was) a high-powered Alpha woman prior to the accident and spends much of the book battling both her Left Neglect and also the idea of having a disability itself.  That is why I liked the book (well, it is also a fun read).

The concept of separating ones self from ones disability is something I think about a lot, especially in terms of Nat and his autism.  Sometimes I feel like autism defines him, and makes him someone who seems younger than he is, less capable, and somehow also more lovable because he bends my heart with his need.  Other times I feel like the autism is just something that gets in his way, that he operates around or through.  It clouds his mind so that he can’t see the right words.  It presses in on him when he doesn’t understand what is expected of him, and the world then seems to be going by too fast.  No, maybe that is when I love him all the more, because I can see Nat distinctly apart from autism and his supreme efforts at purely existing here — and my heart swells with pride.

There is a point in Left Neglected where Sarah crosses over into acceptance.  I don’t want to spoil the book for anyone, but when it happens it is at a moment when she feels both the most ridiculous and yet also the most free — and she feels like a cool person because of the freedom.  Even though she would never be caught dead in this particular situation before the accident.  She finally lets her freak flag fly, which is what it’s all about.

I’m still trying to get to the point where I do not care what others may think of Nat when he is deeply into his stimming.  Or what I mean is, I am trying to get to the point where I do not think anyone is judging Nat when he is deeply into his stimming.  I so often assume they are laughing at him, not getting it; but I really don’t know what their looks or smiles mean at all.  I wish I could be proud of him at all times, instead of feel the burn of embarrassment and anger (at the others).  I admired the way Sarah ultimately handles her own embarrassment and is humbled by her struggle — the way we are all humbled by life eventually.  Once we can move past our feelings of humiliation and say, “Okay, yes, okay,” the way Nat does — “Okay, yes, okay, I am flawed and parts of me are ugly.  Sigh, move on.  Or as Sarah learned when she started walking at last:  Cane-Step-Drag-Breathe.

Whatever gets you there, gets you there.

Long time since I blogged.  I’ve been obsessively trying to make Nat’s group home a reality.  I’ve been traveling (to Provence, which feels like a fairy tale).  And I’ve been trying not to deal with Max going off to college. But it is imminent.

My relationship with Max is a good, solid one.  He was easy to raise.  My main concerns were that he not be too much the Middle Child stereotype, or the Sibling of a Disabled Child stereotype, both of which are about not making any trouble.  I also worried that he did not get enough of the right attention from me; that no matter what I tried, I was probably still psychologically occupied with Nat.

One way that I spent time with Max and Nat, which was not too difficult, was to take them to stores and to the mall.  Not that I would buy myself clothes or anything; I would just wheel them in the double-stroller, and later, walk them into the food court, after we looked at the glass elevator that showed how everything worked.  Max cared about these things; Nat was quiet about them.

The mall we visited most often was Cambridgeside Galleria, in North Cambridge.  It was very close to Lotus, where Ned used to work.  We had one car in those days, and so I needed to take him to work if I was to have a car that day.  On those days, I would take the boys to the Galleria.  We had our routine, of course.  Nat and Max both love routines, even though only one of them is autistic.  People in general love routines and traditions, and that’s what our Galleria jaunts were.  I’d take them to the Burger King for dinner, after a stop at Mrs. Field’s cookies.  We would marvel at the huge flat chocolate chip cookie in the case.  I would buy them chocolate chip cookie cupcakes; I can’t remember much about them except colorful fluffy frosting.

The Burger King was particularly good in terms of the toys that came with the kids’ meals.  Back then, Toy Story One was very big with us, and a theme with Burger King more than once.  Because we went practically every week that year, we amassed quite a collection of Toy Story characters.  At one point we had tiny Buzz Lightyear, Buzz Lightyear in a little rocket, giant Buzz Lightyear in the box like the one in the movie, and a Buzz Lightyear costume.  Maxie was Buzz Lightyear through and through.

After a while, life changed, and we stopped going there.  The Galleria was a bit scuzzy, I realized.  I didn’t miss it.

Things are so different now.  I shop online or at The Atrium, an upscale mall in Chestnut Hill. No one eats Burger King in my family, especially Max, who is a vegetarian.  He also carefully monitors his junk food and sugar because as a kid he would get such stomach aches and nausea from that stuff.  We got rid of the Toy Story box of toys long ago, at a yard sale.  Mostly Max has his own life — already, even though he has lived his gap year with us.  He drives, he goes out and stays out late.  His girlfriend is often here.  I adore her, and she is like a part of the family.  But I have missed Max in the last year, even though he is still here.

Today I needed to go to Cambridgeside because it was one of the few places with a Travelex counter.  I needed to exchange the euros on the Travelex card that I had bought in preparation for Provence. I invited Max to come, just spontaneously.  He said “sure;”  he still likes to shop.

In the car our conversation was awkward sometimes, with most conversations originating with me.  But when we shut the doors of the car, Max said, “Is there a cookie store here?  Somehow I always associate parking garage smells with cookies.”

I looked at him in surprise, but why should he remember Mrs. Fields’ Cookies?  “Oh yeah!” I said, and told him about our tradition of getting the cookie there.  “Hmm,” he said.

We went to the Travelex counter, where they gave me $740 in cash; no checks, no putting it back on the debit card.  We then went to Best Buy, then Borders, which was having a huge close-out sale, and then we split up.  He eventually joined me at the Gap and I spent a bundle of that cash on his college clothes and stuff for Ben.  I started to get tired of being there, and we left.

Back in the garage I remembered the smell, and the cookies.  “Oh!”  I said.  “The cookies!  We forgot!”

Max, in his usual laid back way shrugged.  “Do you want one?”  I asked.  “I don’t need one,” he said, predictably.

We walked a few more steps, a sad pressure growing in my chest.  In ten days he’d be in college.  It had been years since we had been at the Galleria; who knew how many more it would take to come back — if any?  Not that I loved the place.  But I love Max, and I loved his memory of it.

“Let’s go back,” I said, as we dumped our Gap bags into the trunk.  He hesitated.  “Come on, why not?”  We went back to the doors and took the elevator to the street level stores.  We went in the wrong direction and then found the signs for the food court.  As we came to the Food Court, I looked left and there, in ugly pink and orange, where Mrs. Fields should have been, was a Dunkin’ Donuts.  “Oh,” I said.  “I guess we can’t expect that a cookie store would last that long.”

“Yeah,” said Max.

“Do you want a frozen yogurt?”  I gestured to the stand to the right.  But I knew he’d say no.  There’s only so much effort Max will make for sugary food these days.  We walked back through the mall, and stopped to look at the elevator.  It went so far down, ending in black metal darkness.  “Wow,” I said.  I’d never noticed that, or maybe I’d forgotten.

“Yeah,” he said.  “It really is cool.  Look how you can see everything, even the huge counter weights.”  We marveled in silence.  Then we went back to the car, and drove home chatting comfortably.

One of my missions these days is to help people understand that communication comes in all, shapes, sizes, and sounds.  It is the verbal people with autism who taught me this.  They are known as Aspies or those with High Functioning Autism, but I know them as inspirations.  Amanda, Ivan, Christchurch, Diva, and so many others have taught me that just as Nat can learn, so can I.  Here is my latest piece, from the Boston Globe Magazine, about Nat, son and my number one muse.

I just received this notice of some new legislative amendments regarding the use of aversives in autism education and behavior management.  Please use this link to write to your legislator, if you are in Massachusetts!  See the ARC of Massachusetts’ message below:

The Massachusetts Department of Developmental Services (DDS) is proposing amendments to their regulations that will end the use of aversive interventions in Massachusetts. Aversive interventions–which include hitting, pinching, and electric shock–are used in treatment plans to modify an individual’s behavior.
But aversive procedures have never been shown to be effective methods of permanently altering behavior. Their only use is as a suppression of the symptoms, not the root cause, of undesired behaviors.

Other, non-invasive methods, which pose no risk to an individual’s well-being, have been developed and are effective not only during their use, but after the their withdrawl.

There are individuals across the Commonwealth who use aversive interventions as part of behavior modification plans, and the amendments allow these individuals to continue using aversives. But as a state, we need to move forward. The amendments take the positive step of banning aversive interventions for those partaking in behavior modification plans after September 2011.

So join us in making Massachusetts a better place for people with disabilites and support the new DDS regulations that ban aversives. Take action and submit your comments support the regulations.

I was pedaling hard up a hill today, listening to Layla.  I reached the blissful pinnacle of the hill just as those first brightly colored piano chords struck, and the song shifted into Jim Gordon’s second part, so different from the first.  Where the beginning verses of Layla — Clapton’s — are passionate, lusty, angry, frustrated, the second part is pure yearning.  Maybe even a letting go, as those birds tweet twice at the very end.

The song shone in my ears and it tore my heart at its most tender spot, right where I keep Nat.  There on my bike I wanted to cry, thinking about this morning, when I had told him about his autism.  This morning, in the quiet fresh light of the early sun, I had suddenly realized that it was time.  “Nat,” I began, “I want to tell you something important, about yourself.”  His eyes were on mine, focused and interested.  “You know, you have something called autism,” I said, slowly.

“Yes,” he said, listening.

“You probably hear a lot about autism.  Bad things.  But what I want you to know is, you are not bad at all.  You are good.  But autism is a disability.”

“Yes.”

“So that means — a disability is something that makes things hard.  You have a hard time talking.  That is autism.” He waited for me to go on.  “A lot of people have autism.  I don’t have autism.  Max doesn’t have autism, that’s why he can talk a lot.”  I paused.  “Your brain works differently because of autism, and makes it hard for you to talk.  But you are doing so well with it!  Your emailing is so great!”  I was smiling.  Ned was watching intently, I could tell from the corner of my eye, but I did not want to see what he thought.  If he was skeptical, I did not want to know.  I was not skeptical.  I feel that Nat understands, and so now I was acting accordingly.

“I write a lot about you, to tell people about how much you’ve learned.  They read my books because it makes them happy about their children.  I teach them things about autism.  Because you’ve done so great!”

He sat very still.  “Yes,” he said.  Did I see a flicker of something?  Was he sad?  Confused?  Did he finally understand why life feels the way it does to him?  Of course I don’t know.  I felt I did the right thing.

But as Layla flew upward and my bike sped downward, I wondered if I had helped Nat or hurt him.  It was so late in his life to tell him this, but it is only now that I feel he would understand.  I believed that he probably wants to know why he is different from others, even if he does not articulate it that way.  He needs to know that he is different, but not bad or inferior or broken.  He needs to know how great a person he is, how bright and strong.

But did I convey that?  Or did I just open a door to a dark and scary place for him?  Or did only some of it get through?  I know I’ll have to revisit this, often, to check in with him, make sure he is handling this news okay.

I believe people have the right to know important things about themselves, but they need to know them at the right time.  Nat, with all of his growth this year, in spoken and written communication, seems to be ready for emotional growth.  It is time he took his place in the world, as a man, and the best way to confront such a place is armed with self-awareness.

Still, my heart is hurting for him, because he is so new at all of this.  He has awakened, but it is only 3am in his life.  But just like any of my kids waking up scared, I’m here.  Tweet, tweet.

Report from The Arc of Massachusetts:
5948-0012 DESE/DDS (7061-0012) $4,600,000 $6,500,000
Disability Supports in the Balance:
Conference Committee Results
June 30, 2011

On June 30, the Conference Committee Members released the 2012 Conference Committee Report. We are pleased to report that the Committee chose to endorse the higher House numbers for the Dept. of Developmental Services (DDS). It also came close to the Senate total for line item 4000-0700 ($1,000,000 less) which holds the accounts for Day Habilitation, Adult Foster or Family Care and Adult Day Health, although it did not adopt the language which provided a 60-day notice for cuts. The governor does have the authority to stop such cuts and we will appeal to him.

• The positives are: Family Support with $41 Million (still short $4.5 M of 2011 figure);
• Employment with $1 Million of the $2.7 Million needed for Turning 22 graduates ($124.267 M);
• Additionally the report avoided deeper cuts in DDS service coordination by providing the House number of $60.67 Million.

For Special Education and Children with ID’s and DD’s under 22:

• The DESE/DDS dollars and language which was at $6.5 Million in both branches also reflects a positive for our constituents.
• Among other accounts, we’re pleased to report that Early Intervention did get the Senate figure of $31.4 Million
• The circuit breaker (public school funding for expensive in-house SPED programs) maintainned $213 Million overall (7061-0012)

June 22, 2011, 4:22 pm

Grandfather Knows Best

I just got back from a focus group run the dynamic and talented Lydia Brown of  the Boston Chapter of the ASAN, Autistic Self-Advocacy Network.  ASAN is working with the Arc of the US, advising the Arc on its new Autism Now venture.  Autism Now is a project that is aimed at improving the lives of those with autism across the country.  I’m on the advisory board of Autism Now but until today I wasn’t as sure about what the project is.  Now I know.

Ari Ne’eman, the founder of ASAN and the young man appointed to President Obama’s Council on Disability, gave the keynote (which I missed because I was at Nat’s prom).  I sat in a room of about 25 people, 22 of whom had autism in varying degrees, for the purpose of drafting points for the core values of Autism Now.  Needless to say, my world has turned upside down.  I, a neurotypical person, was far outnumbered and boy was I aware of it.  I sat still, afraid to distract people in any way from expressing themselves.  I tried to listen more than speak.  I did make a couple of contributions (we were hammering out a mission statement and goals for the Autism Now project, from the perspective of folks with autism (Nothing About Us Without Us is the motto).

One person at my table gave me some great ideas for communicating with Nat.  He told me that I could make a booklet of Nat’s favorite Disney people and have the story be about how one of them had to call 911.  This was in response to my plaint that I don’t think Nat would know to call 911 in an emergency.  I don’t know if this would work exactly with Nat right now but what I loved was the creativity and willingness on this young man’s part to help me.  Occasionally he would turn away and flap, and collect his thoughts.  Many in the room did this, in fact.  This moved me almost to tears because it is like what Nat does, and it proved to me that there is indeed a Spectrum, and that these people who could speak (my language) could give me a clue into some of Nat’s struggles.  I loved the way every single person I spoke to asked my why Nat wasn’t there.  He should have been.  Why not?  It made me think again about how I do not always presume competence, but truly we all should.  Just because Nat isn’t getting something now does not mean he doesn’t get it on some level.  My neighbor at the table said “You should just keep asking him, and eventually he will answer you.”

This is very wise, because you can interpret it in several ways.  You can think that perhaps with repetition in the moment, Nat will able to formulate the words.  Or you can think that the repetition over the years will show Nat that you care, that this is important to you.  All of them were testaments to how atypical is atypical development.  The stories about not talking, not crawling, not eating — !  All the kinds of difficulties we run into with our Spectrum kids, to hear about how it felt to be on the other end, the actual one who was not talking, crawling, eating.  It just blew my mind.

The kinds of goals the groups came up with were:  1) More training needed around the country, including First Responders, employers, general public; 2) More flexibility in Adult Services, so that the money follows the client (guess who contributed that one!); 3) More access to communication supports, facilitative communication and technology; 4) More public education about the fact that Silence is Not Stupidity, that non-verbal people are not trying to be mean or rude and are not unintelligent; 5) Autism is a disability and a difference (in other words, autistics are also a political group who want to be treated fairly and respectfully, disability issues/therapies/cures aside).

In between each group’s presentation, I noticed everyone around me waving their hands in the air.  I was the only one who thought to clap.  Finally I asked, “what is that?”  and they told me, it is a widely-known autism thing called, “Flap, don’t clap.”  Clapping, of course, can be terrible for those with sensory issues.

Folks, there truly is a Spectrum.  There is no point in our arguing among ourselves that this one doesn’t really have autism and that one is a fraud and you don’t know how bad it can be and so on.  Let’s not play the whose kid is worse game.  Let’s not play whose kid can pass for normal.  Let’s just focus on what needs to be done:  education of the public, and education/training for those with autism.

Mostly what I brought away from this focus group was the overwhelming feeling of pride in people.  I left in a bittersweet mood, sad for how much people who are different and disabled have to struggle.  Why do some have so much and others have so much trouble?  But I also felt happy to be a member of the human race, actually, because only we have the remarkable ability to compensate for our deficits and then to reach out and help others.  And to speak to those in power with courage and patience about how we need to widen our capacity to care even more.  I applaud ASAN for their efforts.  Er, I mean, I flap for ASAN’s wonderful work.

Ned asked me to go through a pile of old papers and I uncovered a treasure trove of documents from 1992.  Here, below, is the original checklist we made of Nat’s developmental issues.  This is the list that prompted our pediatrician to refer him, at last.  That’s Ned’s script, towards the bottom — we were a team at this point!  (And also note that there are questions about cough medicine dosages at the bottom!  And at the very bottom, simply “Max?”… 🙁   🙁  🙁  🙁

BUT, don’t forget:  he is SO DIFFERENT NOW!!!  🙂  🙂  🙂  🙂  🙂

DayHab is not going to cut it, for all the kids with disabilities who have come up through the schools, since IDEA. These are educated children, with skills and aspirations. They have not been relegated to basement classrooms, attics, and institutions. Excuse my language, but what the FUCK is going to happen if our adult services system doesn’t change with the times?  We educate people for a good reason, not out of vanity. Let’s put those public education $ to use and not let people languish.

How will this change come about?  Not by stripping Medicaid of its funds.  But by bringing people with disabilities to the table (and their families), the government’s table, we can infuse the adult services system with new blood.  New blood means new ideas.  Medicaid Day Hab programs have got to become more flexible for all of the new populations using them.  Shelves of toys and television are a waste of our country’s most valuable resource:  people.  Any people, every person alive has a purpose, has something to contribute.  There is no such thing as people who are “out of it,” or “low-functioning.”  There is only exhausted parents, teachers, and caregivers, who have run out of inspiration and hope.  And funds.

We need some new ideas.  We need some research into adult developmental disability and how to keep those minds growing.  My way of thinking is:  We are Developmental Delayed, Not Defunct.