Susan Senator

I met a person the other day who was absolutely certain that Inclusion of people with significant intellectual disabilities in typical college classrooms was the best way to go. “No one should be ‘special,'” he said. “Separate is never equal.”

“Inclusion” is one of those words that you just can’t argue with. Except that in some instances, I can. The very fact that you are not allowed to doubt its universal benefit is what makes me squeamish.  Sometimes it even feels to me like inclusion is kind of lordly, where the Includer can feel magnanimous because they have invited others in.

Inclusion, however, has been the watchword of the faith of the disability movement, and rightfully so. Because of inclusion, we have helpful laws, accommodations, and understanding. We have bridged certain chasms and brought whole groups of the population out from hiding. Inclusion has brought difference into the pack and made it less so.

But no, that last thing is not quite true. First of all, we do have differences from one another. People with disabilities have disabilities, and nothing but cures take them away.  Some disabilities you don’t see; others you do. Why should the goal be not to see disability? Only when seeing it is getting in the way of fair treatment and respect.

I think inclusion can only go so far. Inclusion is part of the solution, but not all of it. Inclusion is the first step, to right a wrong (exclusion). Inclusion should go without saying; institutions should never be able to turn people away based on color, race, religion, disability, gender, sexual orientation…

But when inclusion is the end goal, I think it may be a weak gesture, especially when it comes to including people with deep autism and intellectual disabilities (ID). For me, the clearest example of this is in education. And here is where many disability activists will disagree with me. But I think that it is not enough to have people with significant disabilities in typical school classrooms, if the classroom is not set up for them to learn, or if the teacher is not trained in autism or ID approaches and strategies.

Disability activists will argue that there must be only one standard, that the same expectations should apply to all. That if we have separate offerings, targeted programs, certain requirements removed, we may be guilty of the soft bigotry of low expectations.

I understand where they are coming from: that long era in history where people with disabilities were relegated to attics, basement classrooms, institutions. Where society started every sentence about the disabled with “They can’t” and everyone stared and felt sorry for them. We never ever want to return to those days. We need our laws, our ADA, our IDEA, our inclusive standard.

But we have to move to the next step and consider the individual. Each person has his own particular needs and challenges, and it should be okay that some don’t follow the inclusive track. Nat did not. Nat went to a private autism school, with very small classes and staff ratio of 1:2, something like that. In a regular classroom in the public school, Nat did not learn because there was not enough focus on him. He needed his lessons and tasks presented in a very systematic, routine way without a lot of distraction and changes. The inclusive classroom could not provide him with that, nor did the teachers have the training in the techniques that worked best with Nat. I am thankful that my town sent Nat to the May Center for most of his school years, because of the tiny classes and the emphasis on direct teaching, repetition, structure. And by the way, no energy or resources needed to be devoted to anti-bullying.

Nat’s typical peers missed out on him, and he, them. Nat was sheltered, not exposed to so many “normal” things. Even his sports were Special. He did have a prom, though. Anyway, we could not sacrifice the curriculum and techniques Nat needed to learn, just so that he could sit with typically developing peers. Sure, they would have gotten a lot out of him. He is very good at inspiring people and teaching us about a whole other way of living. And I also think he may have enjoyed hanging around on the edges of boisterous groups of teenagers. That’s why we found him his social groups.  They are a noisy happy group of young adults who also have disabilities.

I fear the soft bigotry of uniform expectations. I think it is counter-productive to ask a guy who functions like Nat to learn in a regular college classroom. On the other hand, programs in the Community College Consortium for Autism and Intellectual Disabilities (where I work as Director of Autism Adult Services and Outreach) begin with inclusion, by building programs aimed at men and women with significant disabilities. There the goal is more pragmatic, effective learning, on-the-job training as well as soft skill-building. Nat, for example, needs different processing time, he needs a certain level of instruction: simple, straightforward, and relevant to his life because he has difficulty generalizing.

Sure, I sometimes feel sad that he is not on that college-career track because I wanted that life for him. But he and I had to accept certain limitations. We had to make certain choices to ensure his success. We chose a path where Nat could be trained to work and to live as independently as possible, because we thought that would benefit him the most. More than sitting next to but never going out with typical teenagers in high school, and more than taking a drawing or photography class at a local college.  We did our best for him. Others may choose inclusion, and they have the right to do so, but they must be aware of the possible pitfalls.

For me, I would rather see people get what they need and have that be respected, even if it is separate or Special. I would rather that people’s differences could remain as different as they are, as different as they need to be, and have that be just fine, just the way it is. Inclusion makes a fine beginning, but it is not the end.

About 13 years ago, we had a lot of trouble with Nat’s school placement. This is something I’ve written about many times, so I won’t bore you with a complete rehash. In a nutshell, the program stretched Nat too far; he fell apart, and channeled it all into fighting back at people, and none of us knew how to stop or help him. Despite all sorts of expert evaluations and recommendations, the school program refused to put in extra staff for him, opting instead to bar him from the school.

The only way I have ever described myself in that incident — that nightmarish time culminating in a team meeting that still makes me nauseated to think about — is as Mrs. Jumbo, when she struck out at all the other elephants and brought down the big top. Mad Elephant, the sign read outside her cage, and she was taken away from the circus — and Dumbo, her darling, beautiful blue-eyed, auricularly-challenged, misunderstood vulnerable baby.

As enraged as I have been over the years at this and other injustices regarding Nat (or my other two children), I must be honest and admit that I am also perversely proud and self-righteous about this image of myself. It is so rare in this life when we have the pleasure of being definitely in the right and the other side is so terribly wrong — this was a special needs collaborative, for God’s sake, kicking Nat out because of his special needs.

It probably was not so clear-cut a case as I perceived it to be then, or years later. The placement was not right for him, and this doesn’t have to mean that they felt Nat couldn’t handle it and they couldn’t handle him. It also meant that there were places he could learn better, without so much acrimony and effort. But I was so angry, and really scared, so I could not get to my most even-minded self. I sometimes wonder what would have happened if I’d been able to keep my cool and continue to negotiate — but who cares at this point? He’s 23, and he did go on to a better place.

I like to say that I learned from this episode not to overreact — it’s probably better in the long run not to take things so painfully personally, and to cut your losses. But did I learn that? Today this was put to the test. In my last blog post I wrote about how Nat was allowed during his day program — while on the job at the supermarket — to get soaking wet putting the carts away. Nat’s caregiver John and I were all incensed by this. How could the job coach have mishandled the situation to this degree, where he allowed Nat to go out into that cold wet winter weather without rain gear, or without his hood up?

John vowed to follow up, get Nat rain gear, have a meeting about this with the program, and really take care of it. “They have to understand that this is the disability,” John said. “They have to know he is compliant and so they have to take care of him because he will just do what he’s told.” I seethed and thought about switching Nat to another program, and basically chewed on my heart imagining docile Nat gamely going out to do his job.

But even as I talked about it, wrote about it, and fumed and worried about whether they were negligent, another image flashed through my head, of Ben coming home from the high school, soaked because he doesn’t have a raincoat or take an umbrella. I say, “Oh, Sweetie, you’re all wet” And dismisses me: “Not really,” even though his hair is dripping. And then other images, of Max walking miles and miles in the cold and the dark with friends, or alone, no hat, no gloves, just caught up in his life.

Still, I heard everyone fuming all around me about poor Nat, and that was where my head was. And then this morning, I drove him to his day program because he had slept over last night after Christmas in New Hampshire. We were early, so we sat in the car listening to music. I heard my thoughts going in a loop: I’m going to have to go in there and talk to them, how can I not? I’m going to have to get an explanation and have an ugly confrontation and be really strong and threaten to take him out of there and…

I thought about Mrs. Jumbo. I also thought about something Ned had said the other day, about how really the program has done a lot of good stuff with Nat, like believing in him for this job and helping him get so many hours. Keeping him active on the non-working days. Giving me glowing reports of his work. And I realized I was not worked up. I was going to do what I could. I was going to talk to them and show them that Nat is heavily monitored, by both his parents and his caregivers. In case somehow they missed that fact. I wasn’t looking forward to going in, but I knew I had to.

Nat and I went in a few minutes early and it was as if they were expecting me. I guess they saw me crossing the parking lot. The supervisor was very quiet, serious, chastened. Owned it right away. Newly-trained job coach. Miscommunications with the supermarket about rain gear being available there for the workers. Delay in telling the caregiver to bring Nat extra clothes. She apologized, and said she hoped he hadn’t gotten sick from it. And then it was over. We shook hands, and I left.

Driving home I thought again about Ben always walking home in whatever weather, just to be able to be with his girlfriend and not dependent on his mom. And I found myself thinking radically:

Why is it so much worse that it was Nat who got wet on the job? When I’m never this up in arms about Max and Ben getting wet and cold during their days?

Does it matter, a kid, or a young man, getting soaked from time to time? It does, but — it is not the end of the world. It’s not great, but it’s not a felony, either. We can prevent it next time, without bringing down the house and salting the earth.  Yes, Nat has a profound disability that manifests itself in great passiveness and compliance — ironically, 180° opposite from the behavior that got him expelled from that special needs program 13 years ago.  And I think we all feel so much worse when this sort of thing happens to Nat because — why? Because my other sons know what they’re doing? We worry that Nat was suffering, that he was dumbly doing what he was told, poor Nat, poor victim Nat, soaked and disabled. Baby Mine, little elephant with no one looking out for him. How sad that makes us.

Because he has a disability, we kind of unconsciously see him as innocent, childlike. And yes, he is more vulnerable than Max or Ben; that is why he must be supervised his entire life. But they are vulnerable too, in their own ways, being out in the world the way they are. And yet I’m letting them go.

So shouldn’t I also let Nat go to every degree I can, because he is a MAN and he is making his way out there, too? He needs supervision, but not like he used to. He has parking lot safety down now. Street smarts, to a pretty impressive degree. The ability to live away from us, and work a regular job, with no incidents for more than a year.  The same guy who was kicked out of school at 10 for acting out aggressively.

If you think about this another way, without knowing Nat has a disability, he’s just a guy who may have been annoyed by working in the cold rain, uncomfortable, but who in the end shrugged and got used to it. You’d kind of admire that guy, rather than pity him. After all, for Nat, the important thing — the thing that makes him feel life is worth living, is to do what he is supposed to do. To get the job done. I don’t have to cry and rage at the uncaring world and Nat’s dependence because of autism. Because actually it is precisely his disability — the extreme focus that autism often brings — that makes him such a dedicated worker, someone who will even go get the carts in the freezing rain.

Nat went off to the Boston Ballet to see The Nutcracker tonight with Quest, his social group. John came by here with Nat’s suitcase after he’d dropped him off at the Rec Center. It came up that Nat needs a raincoat because as John put it, “When I picked up Nat today from work he was soaking wet.” Apparently his winter coat, his pants, and his hair, were completely wet from work. John asked the people in charge of Nat at his day program what happened, and they did not know. They said that he must have gone out to do carts or something in the rain and came in wet.

John asked them where was the job coach when this was happening, because it is a safety issue. Nat should not be allowed to get so wet, he could get sick. Where was the job coach? Where was the person looking out for Nat? Why didn’t they know that he was getting all wet? John said, “They should have known that Nat would just go and not say anything about being wet.”

Nat is very compliant, and someone was asleep at the wheel. John is on top of this, with emails to the people in charge at the day program, but as he put it, “If I don’t hear back satisfactorily I am going to turn the matter over to you.”

As far as I’m concerned, the matter is already mine because I am so mad, and so sad. John said he’d CC me on the next go around. I think I will call the day program as well.

Here is the thing, again and again. The disability prevents him from speaking up for himself. He just thinks he has to go because they are telling him to. Ahhhh, I hate that he didn’t know or didn’t think he had a choice, that he was out there wet, cold, and uncomfortable. No, no, that is not how I’m trying to run this world. But the fact is, I don’t run the world. If autism moms ran the world, sons would not get soaked in the rain. If autism moms ran the world, they would live forever. Or they wouldn’t have to, because the world would behave itself.

The good thing here is that, listening and looking at John, I recognized some of my own outrage and determination to set this right. He said, “I just was so upset, I almost yelled right there…” He is on top of it, he is right there with Nat. And I don’t need to be first in command on World Duty because John is.

But I’m still scared. I feel like something slipped today, and I’m not quite sure if everything is back where it should be. He’s a little hoarse and I thought I just heard him try to throw up. I have to remember, he’s strong and young, he’s not a little boy, he just got wet. A lot of us got wet today and we’re okay. He came home looking like a model, with new stylish clothes and his blond hair gleaming. He saw the Nutcracker, and when Ned asked “what happened in the Nutcracker?” Nat answered, “The girl fell down.”  Maybe it was a bad day for The Boston Ballet, too.  At least Nat is still standing.

The other day I was talking to a very smart woman about perfection. This is because I was wondering how does it feel to be Nat, to be so disabled that other people make so many decisions for you, no matter how much we try to allow him his own preferences. Other people let him know that it is getting to be bedtime. Other people plan his weekends; sure, he gets choices but someone else has designed the choices. We all know so little about what Nat wants to do, to wear, to eat. During a recent phone conversation he blurted out to me that he had been home all day. I asked him why, I asked him if he was sick. He said, “Yes. Your froat hurts.” I became alarmed and asked to speak to whomever else was there — basically, going over his head, not believing him.

Interestingly enough, he said, “NO.” He simply would not let me speak to any of the staff. I just did not know what this was all about. Was he sick? What was bothering him, was it his throat, or was that a default answer? He then said, “Go to social group!” And I wondered if he maybe was really not feeling well, because he was thinking ahead to Friday night, afraid he would not be able to go to social group. I reassured him that he would go.

I called back and spoke to the caregiver anyway, because Nat could be sick after, all. She checked his temperature and told me that he was normal, and that yes, he did go to his day program today. So why was Nat saying he’d been home? What was the truth? What was he trying to tell me? This interchange made me sad because I do not know what it must be like to have something so strongly on your mind and not have anyone understand you. It grabs me by the throat, even now, to imagine this. Does he feel less-than?

I then thought about some of the adults I know in Special Olympics, who know clearly about their intellectual disabilities. How did they get to that point of perfection, such solid self-esteem, that they didn’t feel “bad” about being this way?

And I realized that I am still hung up on this stuff. I am equating able-bodied with perfection, with superiority! I must still feel, somewhere deep inside, even though I know it is wrong, that there is something bad about “having something,” a disorder, a condition. Something that separates you out of The Glorious Mainstream. What is this squirrelly part of me all about?

I think back to the obvious, my upbringing. I was raised to go for perfection. The best of everything. One of the worst insults in my family was to call something “mediocre.” Never be a dilettante, do your chores, follow the rules, do everything right. In my twenties, this upbringing wreaked havoc on me because I realized (unconsciously) that I was not cut out to be perfect. I couldn’t keep up with doctor’s appointments, with the right diet, with reading the best literature. I started to feel fear a lot of the time, inexplicable, free-floating anxiety. An undercurrent of sick dread flowed through all of my experiences.

I started to imagine illness, or strange circumstances, things that did not happen, things that could ruin my life. I was aware of this terrible irony, that in fearing a life ruined by disease, I was ruining my life. But I couldn’t stop. Eventually, with the help of another very wise woman, I figured out that my fear was about needing to be perfect, and in control of everything. And so the more I went out into the world on my own, the more fearful I became because I was experiencing the fact that you cannot control things in this life. You can’t be perfect. The world under my feet had no bottom to it. You could just keep falling, forever.

I am a long way from those miserable days. I learned how to live with uncertainty, but also to trust myself. I also learned to forgive my mistakes and imperfections — well, a little bit. But you know that saying that you have to love yourself to love other people? A twist on that would be if you can’t tolerate your own human flaws, then chances are others’ flaws are a big deal to you, too. So I still obsess about the bad stuff I see and that happens to me, going back to that childhood belief that I have to get rid of the bad stuff.

So the person I was talking to the other day asked me if it was possible that the people I know in Special Olympics are beyond where I am. That those who have intellectual disabilities, who acknowledge through so many aspects of their lives that they have this thing “wrong” with them actually feel great about their lives, and do not feel bad about their disabilities, their limitations. Maybe Nat doesn’t, either. Maybe the only one with something wrong with them is me because I still believe that perfection is something we can define and see. Something real — and desirable. When the only thing real about striving for perfection is that it makes me miserable.

The Sandy Hook Elementary School tragedy has ripped open the heart of this country and we are scrambling to stop the bleeding and the pain. For my part, I find myself thinking more than ever about mental wellbeing, because I know firsthand about mental challenges — the autistic kind and the mood disorder kind.

I am hurting for this country, and of course for the Newtown victims, but I’m also very very worried about us as a people. I’m thinking that the focus of our raging energy is going to be mostly around gun control — which I support — and also around whether or not Adam Lanza had an autism spectrum disorder. The latter question then will be all about how autism does not equal violence, etc.

I have little doubt that tighter gun control — perhaps mostly in terms of eliminating assault and semi-automatic weapons — will help decrease some violent crime. And I have little doubt that it was something other than autism/Asperger’s that led to Adam Lanza’s violence. But truly, I want our hearts and minds instead to turn to mental health, and what that is in this day and age. By and large, mental health is still weighed down by tremendous stigma.  I’ve been so used to thinking and writing about autism as something people must understand, to eliminate prejudice and stigma. To foster community inclusion, friendship, fellowship. But now I am thinking about how that compassion and understanding must extend to mental health disorders as well. We need awareness, understanding, research, treatment, and coverage, as they always mention at the peak performance brain training.

And we are a long way away from that. So many of us are scarcely able even to admit that we go to a therapist, much less about being on medication. Certain older generations don’t even consider psychotherapy as any kind of valid solution to emotional problems. And anti-depressants? It is often considered a weakness to take medication for depression or mood disorders or OCD, etc., rather than a physiological necessity.

And even if you do accept the fact that most people at one time or another need professional help with their emotions and psyches, and that some people need medication and professional help for the rest of their lives, how many people can afford that kind of treatment? Even in my so-called enlightened and progressive circles, therapy is not something to be talked about except in teary whispers or self-deprecating remarks.

So if we as a nation are so far away from treating mental illnesses and disorders, let alone even talking about or knowing about them, then how can we expect for disturbed and isolated and misinformed individuals to take care of themselves? There is no justification for the horrible things Adam Lanza did, none whatsoever, but if we are trying to understand and prevent another tragedy, shouldn’t we take a deep and honest look at how we as a people deal with mental problems? If we can’t even talk about mental illness without being ashamed, if we can’t seek out routine therapeutic help or afford the medications, how can we hope to improve and heal?

An old friend of mine is a retired high school principal; I’ll call him “Jim.” Jim has been enjoying a second career as an adjunct professor of history at a community college.  He loves his job; he loves his students. Like most community college classrooms, Jim’s mix of students is very diverse: recent high school graduates, immigrants, older people going back for new training, seniors learning new subjects. And in the last few years, there is a new crop of student that has sprung up: the student with autism and intellectual disabilities.

In the last ten years, the number of students on the autism spectrum has grown astronomically. Whether this is due to environmental factors, genetics, or the broadening of the autism spectrum, the outcome is the same: more students coming up through the schools and soon to be entering college and the workforce.

At the beginning of a recent term, Jim was given a letter indicating that a particular student of his had certain disabilities, but only mentioned that he would need extended time in testing; no other guidance. He was not told that in this class of 30 extremely differently performing students, that he would be having a student with a fairly significant disability like autism.

This particular student had both social and communication deficits, mostly about regulating his impulses and boundaries. These challenges manifested themselves in his class performance and assignments, which were often three times as long as they were supposed to be. “When he first handed his papers in, Jim said, “he would write everything he knew about the subject. He wouldn’t get to the question until the very end. He’d hand in six pages if I asked for two, single-spaced, one entire paragraph.” Jim’s solution was to work paper-by-paper, and sentence-by-sentence with this student. Jim said, “A lot of professors would say, ‘they don’t belong in college.'” Needless to say, Jim does not agree.

In September he worried that this student wouldn’t be able to accomplish an oral report in front of the class. Of course the student was reluctant. He spoke way too loud and never looked at the other students. “He was compelled, when I called on him, to bring everything in that he knew of the subject.” When that happened, Jim would ask him a series of questions to bring him to focus more quickly on the issue at hand. He coached him in class, but quietly, sensitively, and respectfully. Any time this student spoke to someone,” Jim said, “he would turn his head 90 degrees away.” Or he would have difficulty with responding appropriately to the material. With one particular assigned historical novel, the student came to class without having done the paper. The book had effected him so profoundly that he couldn’t manage or contain his feelings. Jim was afraid that the rest of the class would not respond well to their peer’s intense emotions: “In class, when we spoke about it, I tried to interpret the other kids’ smiles. Were they mock smiles? Or were they happy that he was expressing what they were feeling?” Jim decided the latter, and that this student actually could help his fellow classmates. He could vent for them. “I felt that he was expressing the class’s feelings that I had gotten in writing from them, that he was expressing them out loud.”

Bringing this student to come to the front of the room was a process that took the entire semester. He chose the very last report slot. “I felt that would give him a chance to see all the other students give their reports and he would see the appreciation, the clapping after every report,” Jim said.

When it was time for him to give his report, the very last oral report of the semester, Jim was apprehensive. Would his student be able to do it? Would the others treat him right? But he had taken careful steps to ensure this kid’s success. Periodically he’d had the students work in small groups of four, and kept the groups the same all semester. This fostered a comfortable familiarity for this student, and allowed the others in his group to see his strengths — he could always be depended on to have vast amounts of material at his command.  And Jim would monitor the others’ behavior, to ensure their respect for this student’s differences.

The student began delivering his report, head turned to the side, looking only at Jim. So Jim walked to the back of the class so that the student would look the right way. Jim saw that the report was going to go beyond the class period. But Jim gave the signal to the others to stay and listen. Because the students knew him so well by this time, and because Jim had modeled care and respect, and gotten him to work in a small group, they all behaved appropriately. No one rustled papers or gathered up bags. “And all the students stayed,” Jim said. “And then when he finished — they applauded.”

Recently I had the happy luck to meet Scott Lentine, a young man who works at ArcMass, and who has autism. Scott was at the Current Trends in Autism conference with his mom, and I thoroughly enjoyed talking to them both. Scott is a poet whom lately has been circulating his poems broadly and deeply among the autism intelligentsia, as well as Sacha Pfeiffer of NPR. Today he sent me his latest poem, and it takes me right back to my summers on Cape Cod. I want everyone to see it and fall in love with summer, and this young man’s wide open heart:

Marshfield Memories poem

Today is a beautiful day on the beach
There are plenty of people and dogs to see
The water is warm and the sky is bright
And seeing some people flying a kite

I am having a fun time with cousins and friends
Hoping that this day will never end
The ocean and sands are comfortable and feel so right
Talking a walk towards Brant Rock in the strong sunlight

Now it is the evening of the third of July
Watching the amazing fireworks from the seawall go by
Talking with family about the latest moments of the day
And meeting some new friends along the way

It was a great time on the beach today
Reading a book and going into the ocean on a bright clear day
These are moments that I will remember for a long time
Being on the beach on a nice warm day is truly sublime

–Scott Lentine

The phone just rang, “Private Caller.” It’s Tuesday, so I figured it was Nat. We had our usual conversation, something like this:

Me: “Hello?”

Nat: “Hi.”

“Hi Darling! How are you?”

“Good.”

“So did you have a good day today?”

“Yes.”

“What did you do?”

There’s some fumbling with words, false starts, and then: “You went swimming.”

“Oh, good! Who did you swim with?”

A pause. “Richard.”

“And where did you eat lunch?”

“Natick Mall.”

“Oh, that’s a nice mall.” And so on.

I don’t know why I said that, I guess I was just relieved that they went to upscale malls, not sleazy ones. I don’t mind him visiting malls regularly, don’t most Americans?

But sometimes I feel sad about his life. Not what he does, exactly, but the fact that no matter what we do, no matter how mindful staff are about self-direction, independence, Nat still has most choices made for him. And I wish that were different.

I get a tinge of pain every single time I say goodbye to him, still, after all this time. He gets picked up at 11:30 Sunday morning from his weekends here, and even if we ask him “do you want to leave in the morning or after lunch,” and he answers, it still makes me sad. It still seems like things are chosen for him. It is still a limited choice, he still doesn’t know to say, “What if I don’t want to go at all?”

Sure, you could argue that none of us has absolute freedom. Well, I’m not talking about absolute freedom. I’m talking about a normal amount. Max chooses his college, within a handful that accepted him, and he chooses his classes. He chooses his clothes, his food. He chooses his friends.

Ben has a girlfriend now. He just decided he liked this girl in his art class, and the next thing we know, he’s going out with her.

Nat sometimes seems like a prisoner of other people’s calendars, other people’s decisions. And I wonder, does he know? Is he sick to death of being treated kind of younger than he is?

Ned says, “It’s the age-old dilemma: how much does Nat know? What is he aware of?” We just don’t know and so we have to hedge our bets. We have to aim for the denominator that is the most likely. Not the lowest, never that. I aim high, and I watch and listen so carefully to see where it lands. I know now that at least he can make a true choice, he can even sometimes offer up true accounts of things. So maybe someday he will be volunteering his opinion, his ideas, his wants, on a regular basis.  Declaring himself, the way Max has a major or the way Ben has a girlfriend. We have to declare ourselves somehow, don’t we? And if we can’t, and others project their own shadow shapes onto you, how do we learn to step out into the light?

As George Harrison might have said, “I really want to see you, Nat, but it takes so long, my Nat.”

“One in 88 can’t wait.” This is the newest rallying call of autism advocacy groups. The phrase is provocative, almost tinged with panic. Our society and government must recognize the gravity of the one in 88 number, and act accordingly, with real solutions that directly address the needs of such a large sector of our population. But this new wave of need does not have to feel like a disaster in the making. Not if we think differently. Not if we realize that one in 88 can’t wait for their lives to begin. One in 88 can’t wait to learn, one in 88 can’t wait to work.

The Community College Consortium for Autism and Intellectual Disability is turning the challenge of ASD into opportunity, by turning to the students with autism and intellectual disabilities — who are already on community college campuses — and asking them “What can you do? How can we, the community colleges develop your skills and interests so that you are a participant rather than a bystander?”

The Community College Consortium knows that skills and real jobs are not a given for anyone today. We all need training that is relevant and useful. How do students with ASD and intellectual disabilities acquire valuable vocational experiences if they are viewed as a marginal, burdensome, iffy group? If employers shy away from hiring these guys because they have no way of knowing what specific skills they have? Employers need to think about what is good for their business. They want some certainty about a potential hire, besides a resume or a job interview, particularly if a candidate has communication, cognitive or social skill challenges.  To this end, CCCAID has just partnered with Thompson Hospitality to create certification programs in the food services industry. Using a curriculum created with Thompson’s actual job expectations and requirements, students on the autism spectrum and with intellectual disabilities will be trained in precise hospitality industry skills. These students will work towards a certificate in hospitality, an industry gold standard that they can take to a potential employer and remove any uncertainty from the hiring process.

CCCAID understands that there is another way to look at what “One in 88 can’t wait” means. There are so many adults with autism who can’t wait to start their lives — meaning, they are excited by the future. Who are ready and able to work — who just need programs that accommodate their learning and training needs. The Consortium’s partnership with Thompson Hospitality will give them the tools and the assurance to get there.

Now imagine if other industries could think as Thompson does — medical, technological, childcare, agricultural… — and if all of our country’s community colleges joined with the Consortium to take these very natural next steps.  One in 88 starts to look more like a solution, a boon to the workforce, rather than a burden on the world, doesn’t it?

I am interested in moving from academia and writing to the field of government policy advising, particular in autism and disability policies. I would like to work at the federal or state (Massachusetts) level. I have a great deal of relevant experience and skills for this type of job. I currently work part time as Director of Autism Adulthood Services and Outreach for the Community College Consortium for Autism and Intellectual Disabilities (CCCAID). In September I was on a panel at the Association of Community College Trustees annual conference. There I spoke of the pressing need for community colleges to develop programs dedicated to serving the needs of those with autism and intellectual disabilities, who often graduate at 22 from the public schools with little or no vocational or independent living skills.

Community college, however, is just one area that society needs to rethink in terms of those with autism and other disabilities. Adult disability services in general, and the systems these adults must navigate, also need this country’s attention and support. I know about this firsthand: my son Nat is 23 and has fairly severe autism. I got my disability education and experience the hard way, by making many mistakes, thinking on my feet, and flying by the seat of my pants. I became a writer to raise public awareness of what parents like me face; back then the number of kids on the Spectrum was only just beginning to balloon, and society was simply not prepared.  I worked as an education columnist for our local paper and also began writing pieces for the Boston Globe, the Washington Post, the New York Times, and eventually wrote three books on autism and the family. My articles on Special Olympics helped forge my friendship with Tim Shriver, their CEO and Chairman. Tim invited me to a White House dinner in July 2006, where I made connections with Maria Shriver, the late Senator Kennedy, Senator Chris Dodd, and others involved with Special Olympics. I also had the privilege of giving a copy of my first book, Making Peace With Autism, to the First Lady, Mrs. Laura Bush.

On a local level, when I discovered that our school system had no autism programs, I ran for School Committee, where I served for five years, on several initiatives, one of which was the Legislative Subcommittee. My colleagues and I created an annual breakfast for our legislative delegation, making the case for more money for education and improvements to our state’s implementation of IDEA. This experience allowed me to form positive relationships with members of our State House, which I still maintain today; most recently I spoke with my state senator’s office volunteering to help on an election bill that would simplify voter registration here in Massachusetts.

I have been very politically active in my state and town, joining and founding various parent and advocacy organizations, holding forums at the State House and lobbying with our Arc on budgetary issues. On a national level, I have been giving workshops and keynotes to autism and disability professionals and parents like me, and always, also learning from them – and above all, learning from my son.

I would bring all of my years of advocacy experience, my writing skills, my speaking skills, my passion, and my energy to disability policy. I can also offer my facility for understanding and articulating issues and solutions that can help people like my son live fulfilled lives through work, continuing education, and community inclusion. Working in disability policy feels to me like a logical and exciting next phase in my journey as an advocate, writer, and mother. My CV is at the link here.

Today Ned and I had lunch with the clients, staff, and parents of Nat’s Day Program/Day Habilitation Program. This was their annual meeting, and they made it into a Thanksgiving luncheon. It was held at a local community center, in a large banquet hall filled with round tableclothed tables.

The room was packed. I saw someone I knew immediately, a mom of one of Nat’s roommates. I couldn’t pick out Nat at first, but Ned did. Ned told me later that when he saw Nat first see us, Nat mouthed, “Hi Ma-ee Daddy,” with his lips, fish-style. We both laughed at earnest Nat. Anyway, I found him at last, at a table with two other men — Ben and Luc, two staff who sometimes work with Nat. There was handshaking all around. Soon Mikey joined us (the third roommate at Nat’s house).

I liked Ben and Luc immediately. They were very good-natured. A videographer and documentary filmmaker when he’s not doing job coaching, Luc exuded confidence and kindness. He joked and laughed with the others around them.

During lunch I took the opportunity to ask Luc to tell me about Nat at work. “Let me process that for a bit and access that particular file,” he joked.  Then he told me about Nat’s day. Nat and another young man know their routines and are mostly self-sufficient, but Luc is with them all the time, to be sure of their safety in the parking lot and to keep them on task. “Sometimes you have to make sure Nat brings back all the carts, not just one,” Luc said. They ride with Luc over to the Shaw’s Supermarket and they punch in their time clocks. They put on their special vests and Nat unlocks the shopping carts and starts gathering them from all over the store and the lot. If it’s raining they work indoors, putting away the baskets and cleaning the bottle-redeeming area. “Nat always knows when I haven’t put the cleaning bottle back in the right place; he makes sure I go get it and put it back right.”

The whole time Luc was talking I felt a buzzing happiness. I could see that Nat was not only safe and among friends, he was also respected for his good work. Luc told me that Nat is “very fast,” and that all the walking is really good for him. He also said that sometimes they take a break and go on a walk, and do some deep-breathing, to center them and get them set up for the rest of the workday. They work for two hours Monday, Wednesday, and Friday, and then take another half hour to have lunch in the employee cafeteria. “We all sit together, this supermarket doesn’t try to keep us separate, like some other ones.” This horrified me, that other workplaces separate out their disabled workers and job coaches. Why? What could that possibly accomplish, except to foster isolation in one group, and indifference or fear in the other?

During the event, there was an open mic for anyone to come up and talk about something they are thankful for. Many of the participants (the clients with disabilities) spoke about people they had lost, and how they remembered good times with them. Most of the speakers were a little unfocused, but you could tell that they wanted to express their love for this or that person.

Then one of the young women who had spoken came over to Luc smiling and said to him, “Hey, it’s my favorite Haitian Retard!”

Ned and I looked at each other in pained political correctness. But Luc just smiled good-naturedly and said, “I know that you’re just expressing how good you feel about me,” and diffused all the awkwardness. It was masterful. It was Luc. I did wonder what the R-Word people would think of this interaction. I know I’m opposed to using the word “Retard,” but what if it is a person who has an intellectual disability herself, making a joke and basically Taking Back the Night?

My feeling ultimately was that if Luc thought it was okay, then so did I.  At the end of the lunch, Luc told us how happy he was to meet the people in his clients’ lives, “so that I understand where they come from,” (those were probably not his exact words). I was really glad that Nat’s program thought to have this kind of get-together so that we all know where we all come from. Just like in the school days, meeting the people who work with Nat does two good things: it helps me know who is working with him, and it helps them know who is behind Nat.  If I could have stood up at the open mic, I would have said I was thankful for Luc.

Unbelievable, sometimes, the interactions I have with Nat. So often I take his adult self for granted. Isn’t that the sorest of human regrets — our dumb unseeing of the most precious events? Must I be wearing a formal gown and standing in some fantastic ballroom in order to understand a Great Moment in My Life?

Great Moments in life are cloaked in grey routine, a few seconds in between a question and an answer. Recognizing them may be our biggest challenge as humans, because those are the moments that cause our happiness, our sense of certainty that our lives are worth living. Despite all of the mess, horror, sadness, and evil, there is also sheer unseeing. Wasn’t it Hannah Arendt who said that evil is banal, found in everyday callus interaction and casual cruelty? I feel that the other side of this is that good is also banal, half-hidden by the dullness of the normal.

Just as we don’t need a Hitler to experience true evil and pain, we don’t need a Jesus to experience true goodness. (I mean no disrespect here to my Christian friends.) It’s right there, it always was, in our own backyard, as Dorothy Gale said.

These thoughts are brought to you by Nat, this morning, around 7am. He was on one couch, I was on the other. He was reading some fliers from his social group. I suddenly thought that I wanted to take him with me to my conference today (the Current Trends in Autism 2012 — the fabulous Dr. Margaret Bauman’s brainchild, so to speak). At one o’clock, my favorite autism theorist and practitioner — Dr. Peter Gerhardt — will be giving a talk and I really want to see him. However, Nat is here for the weekend and I didn’t want to be gone for hours. So, hey, why not bring him? He is not registered, but is the CTIA conference going to turn away a brilliant Self Advocate like Nat? Besides, we’re not going to eat anything there — or else he can have my lunch.

So there I was, explaining to him about this conference, and how I wanted him to meet my friend, Peter. I told Nat very earnestly and carefully about the conference, and what Peter does (“he helps people with autism go to work, have jobs, like you do.”) and that there are people at the conference who have small children with autism, who need to know how to help them go to school and learn. I said that these people will want to meet him, because he has autism and he is grown up and has a job at the Shaw’s and is doing so well.

Right in the middle of my carefully-selected, Mindful, almost PC explanation, Nat started to smile. It broke into my serious little speech and cracked my face into a smile, too. “Hey, what?” I asked him. In that briefest flash, the walls and cloaks fell away and it was just Nat and me, no bullshit necessary. He was self-talking, light, round laughter bouncing in his voice, saying, “Yes.” I realized I didn’t have to explain anything to him about what he means to people, what he’s done with his life. He’s living it, and he knows how to enjoy it.

Ben came in at about 8:30 tonight, the cold air clinging to him as he spun around the living room. He’d been out with a girl — his girlfriend from high school — and a new friend, and he was beaming. I listened to him talk about the afternoon and evening they’d had, and I was marveling at how alive he was. I almost felt like I was talking to someone I didn’t know that well, this grinning guy with broad shoulders, long skinny neck and waist, hair bound back in a pony tail. He’s so grown up now that he seems to be amused by his own awkwardness. He let me cut up an apple for him, stayed downstairs with us a little bit more, and then zoomed upstairs to his laptop and cell to resume with her.

Ned and I had been alone in the house for the later part of the afternoon. We had taken Nat back at around 3, stopping with him for a treat at Starbucks before trying to find the gym where his roommates and staff were hanging out. He was anxious to get there. This was a gym we had taken him to years ago, back when an area support group (TILL, Towards Independent Learning and Living) ran a family day on Sundays. The family gym was the only place we could all play with total impunity, a precursor to our Special Olympics experiences. He’d swing on ropes and jump on the trampoline with us. Max could have fun there, too. And Ben was not yet a twinkle in Ned’s eye.

It was strange to think of how shut out from the world I felt back then: to think that there were so few places we could go where we felt comfortable, and unafraid of what Nat might be up to. The boys were so young, so bright-eyed and so much themselves. Life had not really gotten through to them yet. Max was a big-hearted little boy, his soft self showing right from his eyes, unguarded. Nat was bigger than him then. He was wiry, high-pitched, electric. He did not talk to himself back then, but he was extremely self-contained and self-sufficient. I was used to not feeling needed by him emotionally. My connections to both of them were physical, as the mommy and caregiver. I didn’t get anything back from them; it was just the selfless love you feel towards your children. Anything I got from them was given off in surprising wisps like the cold air surrounding Ben tonight.

The gym building was all locked up, and we could not figure out what happened, except that the house manager must have been operating on old information. The family gym was not there anymore. Nat asked Ned once about going to the gym, and Ned told him it was closed, and that he was going home now. Was it Nat’s disappointment that shot through me, a vestige of our past physical bond? Or was it my own? Yet he accepted the news with a calm “Okay,” and got into the van to go back. I felt the need to reassure him somehow, so I told him we’d make a pie next Friday. “Yes,” he said, and the door shut. I felt alone. But Ned took my hand and played with it, poking my palm while we drove back.

We had a date to skype with Max when we got home, and sure enough, he popped up on Instant Message as soon as I flipped open my laptop. We sat across from him, and I found I was tired and didn’t have much to say. I listened to his stories about his new girlfriend, their evacuation from New York (due to Hurricane Sandy), the friend’s house they stayed in. The next movies he’s going to make, the movies he’s seen (Wreck It Ralph, the same one Ben saw tonight with his girlriend). I had a sigh inside me, an indecipherable feeling, like I was floating above the conversation, not really a part of it.

I went upstairs after that and got under the covers. It was only 7pm. Ned let me sleep and came up as soon as I called for him. He laid down with me, on his back, while gathering me in the crook of his shoulder. He made me laugh at something, and we started talking about dinner. I threw back the covers and went downstairs to the dark cold kitchen, and made some soup. We ate together alone, in the living room, each doing our own thing but talking. Always connected. It’s a new life for us, and yet it’s an old one, too.

Several readers have written to me saying, “I’m an autism parent,” or “I have ASD,” AND “I’m voting Republican.”

I have been wringing my hands trying to figure out how to explain to special needs families how this decision will harm their own children. If your child is in public school, and on an IEP, he/she is getting supports and services paid for by the federal government, the state government, and in most cases, their own city or town. That “big government” that you despise is taking care of your publicly educated children — with IDEA (Individuals with Disabilities Education Act) and No Child Left Behind funds and federal aid to cities and states.

If you have a child on an IEP, are you satisfied with the services he/she is receiving? If not, have you been told about The Strained Budget? If you have heard that there’s not enough money in the budget, that is partly because the federal government has only partially funded IDEA and public education, year after year. Yes, that’s correct. It is lack of adequate public money that accounts for the services you complain about. Without even that amount, you would have little or nothing for your child.

So, yes, it costs a lot of money to educate our kids. There is no getting around it. And perhaps some of that is waste, or some horribly corrupt story you read about in the paper. But by and large, the expense of special education is about the cost of paying specialists and teachers who need to get trained so that we are satisfied with how they treat our kids. Again, if you are not satisfied, that is probably because there is not enough money — enough public money from the government: local, state, and federal — to pay for this. If there were more, you’d have more. Less is not more. Less is less. Is that what you want for your kid? You know it isn’t.

If you want a smaller federal government and you want to pay lower taxes to it, then be prepared for your state and local taxes to go up. Or you will see a serious decline in the services your child gets. It is that simple.

We don’t want it to, but special education, costs money. Lots of money. Not military-level lots of money, but still, a good chunk of a town and state budget. If you don’t want to have to pay more in town taxes and state taxes, you will have to pay more to the federal government –or do without. Do you really want your autistic child to do with less than he’s already getting?

Government programs are for the greater good. They cost money because they do serious things to help people live and be educated and work. If your life is perfect, and you have a lot of money to pay for a private education, and to set up your adult autistic child with whatever supports he many need, then thank your lucky stars. But if you are like most of us, let’s say that number is 99%, then you should vote Democrat and for public funds. You should vote for a government that is willing to raise taxes on corporations and oil companies and the very very wealthy who can afford it. You should not vote for the government that claims to give you more in your own pocket.

And you should ask yourself, which is the more selfish of the two? The government that tries to help the needy and educate our challenging children with tax money — or the government that says, “let them do it by themselves.”

A friend from my old neighborhood died last week. Allan Duncan MacDougall — known simply as “MacDougall” — died at 69 years, from a massive heart attack and stroke. Ned, Nat and I went to a celebration of his life today. Nat was on his way back to his own house, and we took him with us, but I would have wanted him there anyway, because Nat knew MacDougall.

The party was next door to our very first house, which we’d bought in 1996. It was a 1900’s Colonial Revival almost-Victorian, with leaded glass and pocket doors and heart pine floors. It was my dream house. We could not really afford it, but we managed somehow. That could be because we did all the work ourselves (painting, landscaping, kitchen updates…). This was the house where Nat’s autism really settled into him, where Max started kindergarten, and where Benji was born. This was the house I almost ran away from when autism was just too much to bear. We sold it in 2000 and moved to a bigger house to suit our bigger family and where we still are today.

I had not realized back in 1996 that not only was the little house a gem, but so was the neighborhood. Next door was a couple who were so old they had worked for the JFK campaign. Across the street were Susan and Joe, who became good friends of ours, who even looked after our boys when one or the other had to go to the emergency room.  Susan comforted me the day I almost ran away from home, and kept me there with her nurturing kindness.

And on the corner in the crazy orange Victorian were Joellen and MacDougall.  Teachers at Newton North High School for decades together, Joellen and MacDougall were a Milton Road institution. Joellen is probably close to my mom’s age, but she was more just a kindred spirit of mine. She still is, even though we don’t see each other more than once a year. Joellen is lean and intense, active, politically and physically, and she sees right into your heart. Joellen always cared about how things were for me, regarding Nat and everything else. She really, truly wanted to know. She’d look into my eyes like a hawk seeing prey and she’d dive into my problems and wrestled with them almost right along with me. MacDougall wasn’t that way, but he was real a presence in the background, always there. He was a Santa Claus lookalike, a history teacher, a 50’s rocker, a Bob Dylan expert, and a truly independent thinker. In another era, he’d probably have been Woody Guthrie, traveling the trains and singing folk songs and stirring up trouble.

I didn’t know MacDougall as well as Joellen, but it didn’t matter. I felt he was both a stranger and a friend, who would talk politics and simply assume you were right there with him. I was. I remember when MacDougall bought a dog — Rufus Diamond — part Pit Bull, part German Shepherd, and how Joellen and he would toss a ball to him daily in their tiny side yard.

I don’t know if it was MacDougall or Joellen who first thought of it, but one of them asked Nat to come over and throw the ball to Rufus Diamond. And 8 year old Nat did it, giggling at the looniness of the dog jumping for a dirty shredded tennis ball. Nat even took it from Rufus — I think — even though it would be completely gooey and slimy with dog saliva.

Later in life Nat became afraid of dogs but his time with Rufus Diamond was always fun for him. It was possibly even more fun for me, Joellen, and MacDougall because we loved seeing Nat feeling happy with another living being, rather than by himself. It just seemed so little boy normal to me, something which, let’s face it, we all want to see in our kids from time to time. Nat’s catch made the world seem a little less scary to me, the autism more manageable.

I became very close to Joellen just before we moved away. It was hard to leave her and Susan and Joe, but I was set on Dream House Number 2. In some ways I think I broke Joellen’s heart when I left, and I have always felt sad about that. But she has a very big heart and knows how to keep it full. I owe a lot of my peace to her, so I knew that I really had to be there for her today, to celebrate the late great MacDougall.

I told Nat we were going and of course he wanted to go because he loves a party. I told him that Joellen was sad now because MacDougall died, and that she wanted to see us to make her happy. “‘kay,” Nat said, as he always does. When we got to the crowded house Joellen saw me right away and came right over, crunching me in a bony hug. She looked at me with wet shiny eyes and I was so glad to be there. Nat was off and walking around, doing a circuit of the downstairs, but mainly he was in the kitchen where plates of brownies, apple crisp, sandwiches and cookies were spread on a pale granite counter. I had a great time, which sounds strange because it was about a man who is dead, but when you think about it, most gatherings people have around death are completely joyous.

It was getting late so I started making the signal to Ned and Nat. I reached out and hugged Joellen, and reminded her of Rufus Diamond and Nat, and told her that Nat had a real connection to them because of that dog. She had not remembered that, and she lit up when I told her. She turned to Nat to say goodbye, and to my surprise, my darling son reached over and pulled her into a hug. Joellen and I almost started crying right then and there. I thought of how Ned and I have put our hearts into raising Nat to be as independent as he can be, capable, and bright. We’ve also helped him become a loving person. But I kind of think he also got some of that from living on Milton Road with Susan, Joe, MacDougall, and Joellen.

Every now and then, I realize that our society still has a long way to go in terms of dealing with the difference that is autism. I was at a party very recently, and we’d brought Nat, fresh from his Halloween dance with his basketball team and social group friends. He was dressed as James Bond/Tom Cruise and he looked fantastic. Ned and I went out to dinner with friends and then we picked Nat up from his party and took him to ours — a dance party with friends and neighbors.

Nat was in fine fettle. He stationed himself near the snack table, in the back room where Ned and I were mingling with old and new friends. Nat was flapping a bit, talking to himself in his own language, and smiling a lot. He loves parties.

I felt so proud of him, in his black tux and white bowtie and slicked-back hair. He was gorgeous. He was happy. And we didn’t even think for a moment that we had to look out for him in terms of “behaviors.” That’s how far he’s come. Not only does he “behave” himself at parties; he actually loves them.

Yet, still, a friend and neighbor came up to me and asked if Nat was “alright.” She is a lovely woman whom I’ve known for years, and so I was alert the moment she asked. I looked over at Nat who was doing his flappy happy thing. I said, “Yeah! He loves parties. Why?”

“Oh, well, he seemed kind of agitated before. Really agitated.”

I gestured at him with my head, saying, “Oh, like that? Shaking his hands, smiling?”

“No. He wasn’t smiling. I was worried. But if you tell me he’s fine, then I won’t be.”

I patted her arm and said, “He’s fine. He hasn’t been agitated around people in years.” But as I said it, my stomach turned a little. Not because I was remembering those days, but because I was explaining and reassuring someone about Nat. When here he was, in his element, at a dance party in his own home neighborhood, looking so happy and beautiful. And yet there is still this level of malaise others have around him, and even the most well-intentioned among us still have the power, unknowingly, to cause pain.  We left shortly after, but not until I had a really good, bouncing dance with Nat.

Anyone receiving services from SSA (Social Security Administration), Medicaid, Medicare, and IDEA ought to care about this and vote Democrat, for President AND Congress!! Romney flip flops, you can’t trust him, and Ryan has been on the record to cut or not raise taxes for these programs. Read this PBS summary here.

This week  (10/10-10/13) in Boston, the Association of Community College Trustees is having its 43rd annual leadership congress. Why should you care? Because CCCAID (Community College Consortium for Autism and Intellectual Disabilties) will be presenting their model on how community colleges can offer affordable and sustainable curricula to people with autism and intellectual disabilities. CCCAID currently has a dozen or so such programs throughout the country, each exhibiting astonishing success with its graduates.

I have been working with CCCAID for nearly a year now, as the Director of Autism Adult Services and Outreach. My role in the organization has been to represent parents of adults with autism and intellectual disabilities, to members of Congress and the Administration, as well as to colleagues in London and eventually other countries. CCCAID has made very promising inroads into extending the mission of the community college to include many more learners than ever before, with funding that mostly already exists, and can be reallocated in new ways.

Our mission at CCCAID is to help community colleges offer quality post-secondary education and job training for people with ASD and intellectual disabilities, real-world, hands-on experience and connections to the local community that last beyond graduation.  This task goes hand-in-hand with advocacy in Washington, to make sure that the funding streams remain healthy and available to community colleges. Two of CCCAID’s successful models will be presenting at the Friday morning session and I will be there to talk about my experience with autism adulthood and what kind of change in program offerings are needed.

Nat really loves communicating, now. I guess after almost 23 years of struggling with talking, it must be a heavenly relief to do it some other way. The first time I ever heard of autistic people communicating through typing was Amanda Baggs’ video, In My Language. The second time was through Arthur Fleischmann, Tammy Starr and their wonderful daughter Carly.

Here is Nat’s latest email:
hi grandma
apple picking tomoroowe with john mom dana.
how you ?
new house john holly mike bami lunch have
job shaws cart out side good day

love
nat

Cleaning out drawers today. Old old Nat stuff, scribbled on the back of envelopes, scraps, whatever paper a flustered mother had at hand. Desperate pleas to help him, work with him while he was young. Extinguish self-talking, arm-biting, urinating on floor. Help him read, he is beyond kindergarten age. Make him respond, make him play.

I was very absorbed in these historical documents — true primary sources for Special Ed researchers about the state of autism education in an otherwise excellent school system, or for mothers who will find grim satisfaction in noting that some things have not changed at all. I don’t usually feel this cynical. I hope this motivates you.

There was nothing for him, so little known. These messy papers took me back to how much I had to do, every day, how exhausting our lives are. How exhausted Nat must have been. Nothing but disappointment for him, or the fanning of hopeful sparks, so much pressure on him to be who he now is before he was ready. Oh, my heart. My utter desperation for my firstborn child. Help him, help him, the world is leaving him behind.