My terrible OCD returned for a little while the last few days… it’s like an itch in my brain that I cannot get to. Why is it here? I don’t really know. I don’t want a therapist to tell me, either. What I want is peace.

I realize that there is stress in my life that may be contributing. Duh, you think??? Max and Nat are so far away in one way or another and it is hard to talk to 14 year old Ben without pissing him off. They were all here for so little, and also for so long, I can’t believe it’s so quiet here now.

Quiet, for me, is sometimes a little like death. At times like this, I fall into a deep pocket — it has the softness of my home, but I can’t get out of it, either. So I force myself to go out, to ride, to drink coffee outside. To work. I go around blaming my writer’s block, the way I used to blame my parents! It’s none of that. It’s just that there are these feelings, of very deep anxiety.

I do wonder, on a deeper level, is this the way life is supposed to go? There are very few models of family + adult autism out there. Everyone would nod if I mention missing Max, or Ben’s new distance, but no one feels quite right weighing in on what’s going on with Nat, except to give us compliments. Which I often just don’t hear. Sometimes people’s opinions on how I take care of Nat are just like platitudes. Sometimes they’re mean, too brusque. It’s hard to get it right with me.

Sometimes, forgive me for this, but it feels like I’ve just kind of set him up in a little play house so he can act like he’s living a real life. Oh, how horrible for me to feel that way. And of course that’s not true about Nat’s life. He’s working, and doing a lot on his own. But because there’s so much help there for him, it makes me feel like sometimes I’m — lying? Finessing it a bit? How much does he know about his life? What does it look like to him?

Does he have the ability to look at his life and compare to another’s? Does he feel Max gets more from the world? In a way Max does get “more,” but in a way, Nat gets “more.” For one thing, Nat is known by so many more people, because of my writing! And he is loved and admired, I can tell. But what does he know of that? Max, on the other hand, must really know his effect on others.

I don’t know where Ben fits in this; he came along so long after his older brothers, who were practically twins. Max and Nat just feel sometimes like two sides of the same coin.

And when Max or Ben acknowledge Nat in some kind way — that’s the purest joy I know. It is so rare, too rare. “Hey Nat, ‘sup?” says Max. Or Ben laughs at something Nat said that’s funny. Like when I showed Nat a picture of this spider, and asked him what it was, he said, “Owl.” Ben laughed pretty hard. My heart just blew right up into my throat. Happy anaphylaxis. It matters so much to me that my three eggs love each other. That makes me feel more real. Their birth, after all, is probably the most meaningful part of my life.

What else am I supposed to be doing with my life? Is this terrible psychic discomfort I have because Nat is settled and because I just am not?

I ran into an old friend today at my gym. I almost didn’t go, but it was raining, and I needed some kind of exercise. I’m so glad I went. This is someone with whom I’d had a falling out, but I found when I saw her, that had disappeared and I only loved her once again. A (Jewish) New Year’s gift to me.

She gave me an idea, which is that there ought to be autism parent mentors, a whole international network of them. When your child is diagnosed, your doctor could hand you a packet of info — all the stuff you need at that awful moment — and in it could be the website for AutismMentor. (Wow. I am so old, I still think in terms  of my doctor handing me a paper packet, rather than just googling autism…)

Your autism mentor would be a seasoned parent. Not necessarily an old parent; someone who is tempered steel, new or lovingly but heavily handled over the years. The requirements would be that this parent would have reached the phase of Acceptance; that he or she would have gone through several IEPs, and ideally would be at least a teenager. You would get to pick from a range of experiences, places on the Spectrum, gender.

The way it would work is that as soon as a parent can draw a deep breath, look beyond their present turmoil, and maybe smile, they can sign up to be an autism mentor. If they have realized fairly consistently that crises do pass, that their child will grow and develop but not necessarily according to The Book (how I used to hate that book, you know, the one that shows you the one way a child develops, and only mentions autism omce in the index, under “signs of trouble”), and most of all, if they enjoy their autistic child, they are qualified to be autism mentors.

Anyone know if the domain name is free? Seize it. Do it. It would be a huge mitzvah to the next generation of us, a brilliant start to to the New Year.

I went to the MFOFC (Massachusetts Families Organizing for Change) Conference today, which was all about building a home for your loved one with autism or intellectual disabilities.  I gave a workshop with Jeff Keilson, my go-to guy for Autism Adulthood Advocacy, who is also a friend and colleague from Advocates, Inc., our service provider for Nat. Our workshop was all about the pitfalls of starting a group home. Jeff, who is a former Deputy Commissioner of the Department of Developmental Services in Massachusetts, gave the context for this semi-new model of person-centered residential planning, and I gave the specific scenarios I have experienced along that road. Jeff and I are considering making this talk a template for future similar talks, so that we can offer this workshop everywhere.

The most frequent questions I heard as both a presenter and a parent participant were, “Where do you start?”, “Who do I call first?”, and “Where do I get more information on the completion of the building?” The answers to the two questions are intertwined; you start by making calls — and going to conferences to learn and network. You call either a local Arc, Autism Support Center, or even the Department of Developmental Services (DDS) or Executive Office of Health and Human Services, EOHHS. You can call a service provider like mine, Advocates. You can call a friend who is in the know. You can arrange to have coffee with someone like Jeff, and ask your questions. The most important thing to remember is, whomever you call and wherever you start, start early.

I took notes of Jeff’s first talk, in the morning. His talk was called “The Big Picture,” but to tell you the truth, it was actually a very detailed picture of a very big system. Jeff emphasized this and made the excellent point that we in Massachusetts (and probably all over the country) need one definite point of entry into the system. In fact, the chief recommendation made by the Massachusetts Autism Commission was that the client ought to be able to call only one person to figure out where to go for services, and what to do first, next, and so on.

Jeff talked a lot about MassHealth, which is the Massachusetts administration agency for Medicaid. MassHealth has entitlement programs through Medicaid funding, and these are the only entitlements that exist for intellectually disabled adults — a very different situation from the world of IDEA, the public education years. After the age of 18, I believe, a person can apply for SSI if they have a documented disability, and once they are found eligible for that, they become eligible for MassHealth.

Why is having Medicaid-funded MassHealth so important?  Because of programs like PCA (Personal Care Attendant) and AFC (Adult Foster Care). These are programs your child may qualify for if he is not eligible for state services. (State services are often measured by the archaic IQ test, and so many with autism do not qualify, even though they definitely could use some supports.)

AFC  is in-home or out-of-home support for people 16 and over. Recently the program was modernized a bit, so that now you can pay a non-guardian parent or citizen a stipend, from $8-16K annually. (The only caveat here is that you cannot be the guardian and the caregiver. So before you make the guardian decision, think about the AFC regulation.) The Out-of-Home placement with live-in caregiver is a very creative way to provide independent housing for your disabled loved one, along with a support staff. It is tricky finding that special person who is happy to be a live-in caregiver, but they are out there.  The other important Medicaid program is PCA. Jeff told us that PCA is a good program if you get allotted 20 hours; if you’re eligible for with only 10 hours of PCA, however, you’re better of with AFC. AFC creates more flexibility with the money, too.

And, coming in the near future: the ICO (Integrated Care Organization).  This is a new system being developed here in Massachusetts for people 21-64 with Medicaid and Medicare. These are health plans that would manage all the Medicaid and Medicare money for a client. If you have a son or daughter in a program funded by MassHealth, and they have Medicaid and Medicare, you will be able to enroll in a health plan that would manage this, rather than the state managing everything. The ICO will be managing the day program, the AFC, etc.  One-stop-shopping for the clients. Fewer bureaucratic headaches for the families.

I also learned that most people’s primary major health plans have “case management.” Call the number on the back of card, and tell them about the disability. They will use their healthcare assessment, and then offer all the services that you may be eligible for. They will have a list of such items!  So there is another place to call: your own insurance company.

I know I’ve blogged about most of this subject of Autism Adulthood funding streams and programs before, but it is fresh in my mind from today, and it all bears repeating. Autism Adulthood has limited funding and confusing bureaucracies to deal with, but once you start to understand all the funding streams and the requirements involved, it is not so bad. With perseverance and patience (with the agencies and with yourself) you will be able to figure out some form of support for your disabled child. But you have to start learning about it now.

Here is a plea from the Arc of the US, the country’s largest advocacy organization for people with intellectual and developmental disabilities, including autism spectrum.  Apparently the Budget Control Act (BCA) passed by Congress last year will cut any non-defense programs (this is discretionary) by 6% over the decade, and an 8% in addition as part of an across-the-board cut. These are unprecedented cuts! Please contact your Congressmen — it’s easy if you click this button and enter your zipcode!

Examples of individual programs that could be cut are:

• IDEA State Grant  that assists the states in meeting the costs of providing special education and related services to children with disabilities.
• DD Act Projects of National Significance (PNS) that enhance the independence, productivity, inclusion, and integration of people with developmental disabilities.
• CDC National Center on Birth Defects and Developmental Disabilities that sponsors research and  interventions  to help children with disabilities to develop and reach their full potential, and promotes health and well-being among people of all ages with disabilities.
• Section 811 Supportive Housing for People with Disabilities that creates affordable, accessible housing for low-income non-elderly people with the most serious disabilities to help them live independently in the community.

Take Action!!!

Thank you!

Next time someone throws out the words “entitled” and “subsidized”  as a way to describe the very poor, disabled, elderly… those who benefit from government programs like Medicaid/Medicare, Welfare, Adult Foster Care, and so on, maybe point out to them that sometimes it is the very wealthy who benefit from government entitlements.

Regarding Mitt Romney’sremarks about entitlements and the poor (“Romney says dependent 47% back Obama,” Page A1, Sept. 18): As the mother of a 22-year-old man with complex autism, I can attest that my son lives frugally and carefully, and all income is accounted for — through state and federal social programs and his own earnings. I would venture to say that, actually, it is the wealthiest, such as Republican presidential candidate Mitt Romney, rather than poor and disabled citizens such as my son, who benefit greatly from “entitlements,” such as being subsidized by large government tax cuts.

My son pays taxes, and his government check is adjusted downward the more wages he earns. Any fluctuation in his earnings, and the Social Security Administration calls us in to account for it accordingly. My son, seriously disabled, works hard for a living thanks to governmental support, but he certainly pays his fair share of taxes. Does Romney do the same?

Susan Senator

I’ve been wanting to write about author Lisa Genova’s newest book, Love, Anthony for a long time, ever since I first met her (through Facebook). When we finally met face-to-face on Cape Cod, I was happy I’d waited. I interviewed Lisa and was able to put her book into a deeper perspective.

—SLIGHT SPOILER ALERT—

Love, Anthony is the story of two women, Beth and Olivia, and their families. The women do not know one another but their stories intersect nonetheless.  We quickly learn at the beginning of the book that Olivia’s son Anthony has died a year ago at age eight. Anthony had a mild form of autism; he did not speak and he had certain intense focuses/passions, such as lining things up and collecting a certain kind of rock (the story is set on Nantucket.  Olivia is locked inside her grief over Anthony, both his autism and his death. Most of all she feels that his life — and maybe even hers– are meaningless.  Beth, on the other hand, is grappling with infidelity and who she is in the framework of a disintegrating marriage.

Without giving away more of the plot, the point of interest for this blog is the portrayal of autism and Olivia’s experience as an auitism mom  There were so many moments in this book where I almost gasped, or teared up, recognizing myself in Olivia’s reflections (not on Anthony’s death, thank God, but her life as an autism mom), like this one: “Where she feels an unspoken bond, a compassionate kinship with mothers of children on the spectrum, she often feels all sorts of unflattering emotions in relation to the parents of typical boys and girls. Jealousy, irritation, rage, grief. Their normal, blessed, easy, unappreciated lives flaunted right there in front of her.”

Lisa really gets it, the inner life of the autism mom, and I devoured the book, hungry for this subject in a novel, written in an unaffected, unself-conscious, honest way. The book is not perfect, however; what book is, especially when viewed by as harsh a critic as this autism mom-autism novelist? In a way, there was a tiny ugly part of me that felt a burning jealousy of the author, that she had written such a skilled and fresh autism novel, clearly blessed by her publisher Simon & Schuster. Aside from my own human pettiness, one aspect of the book itself jarred me at first, until I understood why. The book relies on a surprising plot device to reveal Anthony’s thoughts, which I won’t reveal, but I must admit that it took me awhile and a conversation in email with the author to appreciate this.  My only reason is that it felt strange and awkward to me that this child would have sophisticated language –in his head. To me, an autistic child’s voice would be a struggling, halting, awkward one (like Nick’s voice in my own book, Dirt). How could an autistic little boy be so insightful and articulate?  It’s not that Anthony’s  voice isn’t extremely moving, as he tries to explain in thought what autism, perception, and emotion feel like to him–and why. It is very poignant. But, I realized after my conversation with the author herself, that I was judging Anthony’s voice by my own idea of what Nat’s inner voice might be like. Lisa pointed out to me something I already knew: that plenty of autistic people have a great command of language but just not expressively verbally. If you’ve seen one autistic person, you’ve seen one autistic person!!

Anthony’s take on the workings of his own brain is fascinating. He describes his brain as divided into rooms that are pretty much sealed off from one another.  He talks about the tremendous effort it takes for him to be diverted from one train of thought (when his mind is in one room) and he has to leave that room and find and enter a new one. The way I understood this is, say that Anthony is playing with stones and lining them up according to color; if his mom were to ask him where he found one of the stones, this would present a moment of profound frustration and confusion for Anthony, because to him the colors of the rocks on the floor have absolutely nothing to do with where he found them; they are completely differrent, unrelated stories, as it were.

Just like Lisa’s book Still Alice, which focused on a woman with early-onset Alzheimer’s, the writing is crystalline, breathtaking, and real. A neuroscientist by training, one might think Lisa would slip into heavy-handed scientist mode, but she never does. She has the technical knowledge to write her brain-centric books with scientific accuracy, but this merely provides the springboard, the initial knowledge of the disorder. But  Lisa’s books are always driven by heart, not head. Five out of five stars!

Interview with Lisa Genova (Some text is edited for readability, and may not be verbatim.)

SS:How did you get this idea?

LG: This book insisted on being this way. It came to me in a meditation.

SS: Do you know any autism spectrum kids?

LG: Oh yes.  My cousin Tracy has a son with autism. Tracy is 11 years older than I am. I spent 1 day a week with her. She was pregnant twins, Lizzie and Anthony.  I had Elena.  Our worlds fell apart at the same time. My marriage was falling apart while Tracy was dealing with autism.

SS: Why did you have Beth, the non-autism mom, be the one who tells the autistic boy’s story?

LG: This book was going to be for a general audience, not just the autism community. I didn’t want to do a book that’s just about autism, that is in such a raw emotional place. And this boy is so little, I thought this might be a good way to allow the reader to stay with the story, to get a little relief from it, [autism], to imagine how their world might intertwine with autism. They’d identify with Beth and then Olivia. I wanted to bridge the chasm between parents whose kids have autism and whose don’t.

SS: Is there a message to the book?

LG: The answers I’ve seen Tracy go through – the denial, the anger, the despair – most days she lives in acceptance now. They way she got there isn’t because there have been neuroscience advancements. It’s because she’s tapped into some spiritual answers and that lends not just to her and her son, it lends to every human being around her. There’s this other thing I wanted to talk about too, that is amazing: that if [Olivia] can stop worrying about the dishes and lie down on the deck with him, there’s this connection she can feel with him. And the world around him. Unconditional love, that’s what we’re all here for.

SS: Why autism? Why did you write this book?

LG: I saw what this could do for autism. To create hope and awareness for what autism is outside of the autism community. I thought that my story might have a way of bridging that gap, for instance when we see the kid tantruming  in the supermarket. I thought I could convey the message that we’re not all that different, autism or no. I also knew I wanted to write a book about autism someday for Tracy.  And there are no neuroscience textbooks on autism. What’s the neuroatanomy, we don’t know. We don’t have any conclusions. I couldn’t rely on my neuroscience  background to write this book.”

It was going to come from parents.

Inclusion, peer modeling, these are the sacred cows of disability. Far be it from me to slaughter something so holy, but I gotta speak my mind here. Throughout Nat’s school years, it seems like all I wanted was for him to be in the Promised Land of Brookline Public Schools’ hallowed halls. But he never was. There was never a good enough, small enough, well-trained enough classroom for him there, and it sucked, becuase I was able to get a scholarship for him, who knew that there would even be scholarships for short people. But still, inclusion is what almost all we autism parents wanted, and still want. Everyone, from your support group to your neurologist–the high priest of autism professionals–tells you that Inclusion is Best. Thou shalt have Normal Role Models; this is the First Commandment of  Autism Treatment.

Sorry about the extended metaphor and capital letters. But this is how it all appears to me. Inclusion has with it the crushing weight of a command, a guilt-laden should. Why is it so important? Because the focus of the world is generally to herd us into the corral we call modern society, or the real world. Some call this mentality “Ableism,” whereby we use Normal, or the usual, or the most common modes to be our standard.

I’m not going to debate that one, either. I do live in this real world, after all. But I also live in the world of autism issues, and I understand deeply and harshly how those real world demands can work against some of us. You who are not autistic, or related to one, do you know how it feels to live your life against the tide?  Where struggle and feeling wrong are your norm?

As Nat’s mother, I am so tired of the hierarchy of brains. If everyone needs to be with normal or at least higher-functioning role models, who will want to be with guys like Nat? I’ll still never forget the time I asked one mom of an Aspie if her boy could have a playdate with Nat. I’ll call this mom Betsy — that’s her real name, after all –Betsy said to me: “I just don’t know what Sam would get out of a playdate with Nat.”

Ouch. No wonder so much of the world back then looked like closed doors. I am pretty sure it still does, to so many younger autism parents out there. And older ones. I hear from my advocate friend how whenever he is trying to put together a group home, there is always a parent who insists that at least some of the other roommates are higher functioning than her son, so that he can learn from his peers. After all, what would he get out of someone lower functioning (read: like Nat).

What, indeed? My feeling here is, how can you “get” something out of someone if you’re sure you have nothing to give? If you feel that your child is only having a worthwhile experience if he is absorbent, how will he ever learn to shine on his own? How do you even really know that there is nothing to gain from being with someone who isn’t overtly communicative?

I think many people delight in Nat’s company. Nat is so different from the average bear, he forces us to take notice. You watch Nat and suddenly you look at social mores, conversation, personal space in a very different light.

I have no doubt that Nat gets a lot out of his current roommates, even if they are categorized by some as low-functioning –as is Nat. They smile, they have fun. Nat also went to a private, non-inclusive autism school. I used to worry so much about the lack of  “peers.” And all the while, Nat was learning how to communicate, how to work in a group, how to be an employee, how to take care of himself, his personal needs, how to understand money, holidays, reading, colors, counting…must I qualify all that is Nat?

No. Because you can’t qualify human beings. Some do not count more than others. If we’re doing it right, always growing, learning, becoming better, then it’s not the guy with the most toys who wins. It’s the guy who can enjoy himself most of the time, and bring joy to those around him.

I meditate on my bike. The misconception about meditating is that it’s hard to do. People think it’s got to be sitting somewhere, repeating some sound, noticing the world around you without letting it in, without letting it affect you. People think yoga and mats and incense, but actually meditating just happens, easily, all the time. It’s just that most people don’t recognize that they’re doing it. I certainly did not think of what I did on bike rides as meditation until someone suggested it to me. I guess it’s meditation because I can’t hold onto my thoughts while riding. Feeling and breathing take over. I don’t tell myself “deep cleansing breaths” or anything like that. I just do what I do, and it happens.  Paradoxically I do end up realizing important things while riding, but these thoughts come to me in flashes of truth that just as quickly blow away like leaves. I’m learning to see these thoughts and store them away for later; further examination is just not possible on my bike.

My bike is not a fast bike; it is a mountain bike, and not only that: it has 29-inch tires. These tires are a third of the width of a car’s tires. This is a bright red Specialized Rockhopper, Scarlet, born to jump and crunch things. Acorns pop under Scarlet’s fat tires; curbs melt away. The tires work themselves up to a strumming zhing once they get enough momentum; the sound is hypnotic. I love the bike, even on an uphill, especially on a downhill.

On my way home during my favorite bike ride there is a street that is mostly one swooping downhill curve.  The street is lined with big gracious 19th century manor-type houses, in gray clapboard and dusky stucco. They go by in a blur, though, because I’m going so fast.

As I took the curve downwards today, I found myself leaning too far into the turn, and my head was flooded with that nearly orgasmic high that is part of going too fast. It’s delicious, it’s thrilling, but it’s dangerous. I could see the sandy gray road in front of me, moving towards me too quickly. In the past I have thought, “I’m gonna fall, I’m gonna fall…aaaaah” Bu this time I remained aware that I was riding, I was still riding, and that I did not have to fall. I consciously did not fall, because I did not allow myself to picture falling. I realized then what panic is: panic is giving up, giving into the fear. Panic is seeing the worst thing happen so that you can no longer have the best thing happen. Thus, when I panic, I fall. This time, I did not panic, I rode through that scary patch, willing my arms, hands, and legs to hold me up. Scarlet did the rest.

I bumped along to the bottom, braking hard but still feathering it in, keeping it steady.  I had a flash just then, of Nat during one of his aggressive phases, and something that happened between him and Ned. Back then it seemed like the bulk of Nat’s aggressions occurred with Ned. This is probably because I would give in and avoid the conflicts. Ned stood up to Nat, every time. And one time, he said this to me afterward: “I don’t know, but I realized that he’s my kid. He’s just my kid and I’m going to just be here for him. Like that’s my job, even if I get hit.” And he didn’t get hit.

I look back on that time, the beginning of Nat learning to deal with his frustration in other ways. But I think that it started with moments like that with Ned, where he just refused to panic. It is almost as if he refused to be hit, or at least to be afraid of it. And I think that Nat sensed the unconditional love, perhaps, and it made him feel safe. Feeling safe meant he did not need to lash out; he realized on some level that he would be okay.

Now, I am not saying that if you get hit you are doing something wrong. And I am not saying AT ALL that it is your fault, or anything like that. All I’m saying is that there was something about Ned realizing he could plow through that scary moment with Nat that then made it possible.  Is it facing your fear? Is it a kind of letting go, realizing that whatever happens, you can take it? Kind of, but I feel that it is more. It is a kind of mastery that occurs, when you’ve been through this difficult thing enough times, that you know the extent of its horror, and you no longer fear it. When you no longer fear it, you are free to do even more with it. You can handle it, you can take care of yourself.

Nat had an appointment with his psychopharmocologist, Dr. M, this afternoon. I met Nat there with John, our beloved House Manager. I wanted Dr. M and John to meet, both so that John could add his observations to the conversation, and also because he needs to be familiar with all of Nat’s professionals. For this particular visit, I wanted the discussion to be whether we should begin decreasing Nat’s Risperadone even further. He has always been on a very low dosage, and even lower since the winter, and he is doing spectacularly well since he moved into his adulthood situations. (Knock wood.) Since graduating, Nat has shown much more interest in communicating, he has also worked at two new jobs (CVS and now Shaws), he has a varied day program, he has moved into a house with three other guys (soon to be just two other guys) and caregivers.  Also, his younger brother now goes to college.  That’s a lot of change for anyone. And Nat has more than handled these changes; he has taken them and run with them.

I got to the doctor’s office before John and Nat. I sat there staring at my cell phone clock and all the little kids running around — Nat’s doc is at Children’s Hospital; I believe it is more important that he have continuity of care than a doctor/stranger meant for adults. The doctor feels the same way. All of Nat’s doctors and his dentist love him and have said he can go to them forever.  I glanced over to my right, though, and Nat came striding in, this striking young man, all tanned, blond and tall. The man from Ipanema. It was like a delivery of candy, seeing him. “Hi Ma-ee,” he said casually, and sat down next to me. Mmmm delicious. I was also happy to see John. No problem navigating the Boston medical area and its parking issues.  John is breathtakingly competent.

I was so proud sitting there next to my handsome, still, Nat, while little kids ran around and the parents looked tired and anxious. I was neither. But I remembered that so well. I wanted to tell them how it used to be, just so they’d know, and hang in there. Not everyone can be Nat, of course; in fact, only he can. But still. There’s so much hope swirling around us you just have to kind of wait, resting lightly, until it comes your way.

We went into room 25 and the doctor was so pleased with Nat. Nat was at his absolute best, where he strains his head forward towards you to answer your questions exactly right. It’s so odd, obvious, and dear that he’s trying so hard. I sat there with a bubble of laughter bouncing in my throat, ready to burst any moment.

In the end, we decided collectively not to fiddle with the dosage at this time. The doctor explained to me that Risperadone is not a personality-damping drug, not at this dosage, not at all. He said it is an anti-anxiety, for the most part, similar to the SSRI’s like Prozac. (But it is not one of them. It is a neuroleptic drug, considered an anti-psychotic, but not heavy handed like Haldol.) He said, “I would not recommend a change yet because you don’t want him to have any kind of regression or incidents, as he had in the past. He could lose so much, if he were to become anxious and push someone.” I know, I know. I remember so well.

Medicating someone need not be seen as a moral issue. Psychopharmocology is not as exact a science as cardiology; but think of how easy it would be to put Nat on heart medicine if he had heart issues. So instead he has anxiety and sensory and processing issues and certain drugs can target those. Why should I be ashamed of that? If the risks are extremely rare, and we monitor him so closely (labs, EKG’s, office check-ins). This medication, Risperdone, a.k.a. Resperadal, gave Nat a better life, rather than a reduced one. I don’t think we should shame parents for opting for meds if they help and we’re careful.

At one point the doctor turned back to Nat after he’d finished talking to John and me. He looked at Nat for a moment and then Nat said, “How you?” Dr. M was so startled by being asked a question by Nat that he didn’t get it at first. So Nat answered for him: “Good.” The doc was flustered and asked me what had just happened. I said, “He asked you how you were and when you didn’t answer him right away, he answered for you.”

The doctor was so pleased. “Oh, that is very kind of him,” he said. I was just delighted. The only thing I wished was different was for Dr. M to speak more directly to Nat, and not as much to me and John. I showed him the way, by including Nat in everything I said, like this: “So Dr. M was just asking me what you do during the day, Nat. Will you tell him?”

“You work at Shaws.”

God, will I ever get used to Nat answering questions like that? I think it will be a joy forever.

All this election fever has gotten to me. There is so much press about people being denied the right to vote, especially people who have a hard time getting I.Ds, getting to the polls, etc. Those with disabilities probably have it pretty tough to get near voting booths, but it is so important that they weigh in this time! With Medicaid and Obamacare at stake, we stakeholders must vote for the politicians who support services and care for the disabled.

I was thinking that I or Nat’s caregiver could teach him how to understand a voting card. Nat is over 18, he has a valid state ID, he pays taxes, and he enjoys a full life. I think Nat should vote. This is the first time I have thought of that. But if Nat can be taught to write his name, to read, then he can be taught to look at a voting card and fill in boxes.  Nat has such a big stake in this election. He stands to lose a lot of all he’s gained.

I think any 18+ year old US citizen who can read, think, and make a mark on a card should be educated about the issues in whatever way they can learn, and get familiar with the process of voting.

Regardless of whether Nat votes in this election, we all had better be sure we do. And we have to think beyond our pocketbooks and beyond the economy. There is so much going on out there. Helping your fellow man should not become a thing of the past. But we need to band together as a society and reinforce those values.  Think of it this way. If private funds could do it all, then why didn’t the disabled do more with their lives prior to these social programs? Why didn’t private charities raise enough money for assisted living facilities, job coaches, personal care attendants?

Is the answer that it’s none of your concern if you’re not disabled? But if that’s the case, why do you go along with supporting the military if your life isn’t directly affected by Iraq or Afghanistan? Why support public schools if you aren’t in school anymore? Why support highways in places where you don’t drive?

Don’t make mistake selfishness with freedom. People’s lives are at stake. Get involved and vote!

Nat’s group home is changing. This is not terrible, it is to be expected. One of the families has a very different set of values and goals for the home, and so the other three have decided to move on. Naturally the bulk of the discussions among the families and our service provider has been about how the young men will deal with this change.

Ned and I figured that Nat would probably be okay with it, because he is actually pretty good with transitions and being flexible — at least in the more recent years of his life. But truly, I always felt that it would be good if Nat could be flexible — my other children as well — because that is the flavor of our family. I find it very difficult to plan things. I don’t like being pinned down. I also find it hard to focus on something that is several events, days, or weeks away when I still have to get through other things first. Ned is much the same; he lives a lot in the moment, and likes to lose himself in his sons, his projects, work, and house checklists. Planning vacations or dinners out, for example, has always fallen to me in this relationship. That took me a while to accept — I still tend to force these things on Ned — but I’m better at it than I used to be.

It makes sense that our sons are the same way. Nat, being the oldest, is the most familiar with how we fly by the seat of our pants. One would assume that because he’s autistic, he freaks out from our “rackety-packety” lifestyle (that’s my mother-in-law’s term), but this is not the case.  We’ve changed many plans last minute, from which restaurant we’re going to, to deciding to stay an extra night on the Cape.

We moved a lot in our earlier days, and this was another change Nat had to adapt to. So it does kind of stand to reason that moving out of this particular group house would not be terrible. The big question we all had was how to tell our guys, and when.

John, the group home manager is just fantastic. We all love him. It turns out that he took the guys on a little field trip to look at a possible home, without telling them what he was up to. He assumed that they would not figure anything out. He was wrong about Nat!  Nat moved 5 times in his boyhood, and then into the school residence, and then into this group home. Nat has come with me on real estate jaunts, to check out houses. He loves wandering through other people’s houses. So when John took them to the potential house, it clicked with Nat immediately. And a few days later he thought he heard Nat saying, “Move out of R___ Road.”

Oh my God, he knows! thought John. So he sat down with Nat and went over the whole thing, what was to come, and when.

I didn’t know about any of this until our meeting today. But it explained a lot to me. I have felt, for the last few home visits, that Nat’s light was somewhat dimmer, that he seemed kind of distant with me. Lackluster. Not interested. I was really worried. Was he depressed about something? Yes, I assumed…

So today I visited him in the afternoon, after his day program, and took him out to a big new mall that has a JP Licks (Nat’s favorite ice cream store) and also a Gap (what mall doesn’t?). John told me Nat needed new khakis for work and some button downs. Anyway, as soon as Nat buckled up in the car, I turned to him and said, “Nat, we have to talk about something very important coming up.”

“Yes.” And he was all eyes.

“In the fall, kind of when it’s your birthday, you and D and M and John are going to move to a new house.”  I looked over at Nat. He was grinning his head off.

“Yes.”

I continued to describe the house, and how it would be all the same guys, the same day program, the same John. Just the house would be different. “It was time for a new house,” I explained. “Sometimes people move to new houses.”

“Yes.” Giggle giggle grin grin.

Some things are pretty easy, it turns out. With autism, don’t assume stuff, and you may be pleasantly surprised.

1. Mountain biking with Max through Narnia (his words)

2. Hot air balloon ride for Ned’s 50th, with all of us

3. Off road ride in Cutler Park, stuck in mud

4. Nat’s conversation with Melanie on Facebook

5. When I bought Scarlet (Specialized Rockhopper Mountain Bike)

6. Talking to Max at Peet’s

7. 27 mile bike ride alone to Provincetown

8. Provincetown afternoon with Laura

9. Nat’s gold medal 25meter freestyle race in Special Olympics Summer Games

10. Ben’s new face-showing ponytail hairstyle

I guess I have to resign myself to the fact that there is always going to be some guilt and sadness around the decisions I’ve made for Nat. As I say this, I already can hear people rushing to tell me that it is the same for all kids, autistic or not. But no, this is different. Remember, I have two other neurotypical sons and this is different.

It’s different with Nat because he has very little say over what happens to him. No matter how conscious I am of his personhood, his adult self, his wants and needs and skills, because of his communication difficulties I have to make his decisions. I ask and I ask, contort the questions over and over to determine how he really feels about so many things, but often I don’t feel confident that he has really understood me or answered in a way that means something to him.  Nat’s brothers, on the other hand, can listen to and process what is said to them, and they can articulate questions that bring them answers to help them with decisions.  Even though Max so often cannot seem to plumb the depths of his feelings about something, I still feel that he is aware of what is being said to him. Sometimes I think he chooses not to make the effort to figure out how he’s feeling or what he thinks of something. That’s his way; he goes with the flow. But I don’t often think of Max as being buffeted by other people’s will.

Actually, as I write this, I’m realizing that maybe I do. Ever since Max was a little boy I have worried that he is too passive. From the time he was a toddler, he was the one who would yield to others. The bossy baby on the playground would always end up with Max’s toys. He would hand them over rather than fight, looking at me for answers. Why, Mommy? Why are they mean? Or was he saying, It’s okay, Mommy. I don’t mind. As he got older I worried about the same thing, in more complicated ways. His friend J seemed to tease him too much in kindergarten. His friend N was a subtle bully. His girlfriend H was very strong-minded and seemed always to get her way. And of course over the years Nat hurt him but still all his life Max only hit him once — with a toy hammer.

And yet, every time I would raise this issue of passivity to Max, he would give me this half smile that seemed to be conveying sympathy — for me. It was as if he felt sorry for me that I was so hung up on what other people did. And he was right. I remember asking him for advice sometimes — probably this was inappropriate but he seemed so wise and content, more than I ever had been at his age. I always kept it general, never mentioned names, but in reality I was trying to get his opinion on something that had occurred between a friend and me. And he really truly did help sometimes.

Over time I have come to realize that this quality of Max’s works both ways. On one hand, he may end up following more than leading. But on the other hand, he is so beloved, so respected and sought after by his peers and others, that it works for him. And really, he is a leader, though a reluctant one. At high school and then at college he founded clubs because he needed there to be a photography club and a Dr. Who club. He is just as much an older son as Nat is, because they are in parallel tracks, each striking out on their own very different adult lives.

And yet there is sadness for Nat because he is so much more passive that it pains me. It scares me. I can only hope that those he encounters, those entrusted with his care, will not take advantage of that. I stay involved in his life to the maximum, meeting and forming relationships with most of his caregivers. But still. And anyway, it is not really that fear that I’m talking about — his being a victim of a terrible crime — it is more on a day-to-day level, that I’m afraid he does not have much choice in anything he does.

And again, is that so bad? Don’t most adults have to work at jobs they don’t really like, are most marriages just what people want them to be? Isn’t life all about compromise and not getting what you want, and living with that as gracefully as you can? And who does that better than Nat?

But it is different for Nat. Because I don’t know if he even can tell himself what he wants, let alone others.  And therein lies the rub. The damn spot will not out no matter how much I rub.

Opinions

My autistic son’s step into the wider world — through Facebook

“Crawlin’ clothes and dysentery,” Mammy grumbles in Gone With the Wind, as she boils more uniforms of the endless Civil War refugees coming through Tara. But it’s Melanie who has it right. She feeds and cares for those Yankee soldiers who stumble onto her land, even though she and her family are Confederates. Scarlet, of course, is horrified that she would do all that for strangers, and Yankees yet. But Melanie explains how she imagines Ashley wandering back from Spotsylvania or some GodAwful battle, into some Yankee woman’s home, in need of food and care, and how she hopes that he would be cared for. “It could be Ashley. They could all be Ashley,” she says, surveying the scraggly soldiers with syrypy brown eyes.

I’m no Melanie Hamilton Wilkes. But this scene from Gone With the Wind was in my head as I waited and waited at Stop & Shop for a young man and his job coach to finish packing my stuff. It was taking too long, I knew that. My hands itched to grab my boxes and cans and shove them into the plastic bags myself. There were two people behind me who already had paid. My stomach roiled with anxiety for this guy. If I were a regular person, wouldn’t I have been impatient and irritated?

But I’m not a regular person. I’m a crazed mother. I’m Nat’s mom, and so I know about this. Nat collects the shopping carts at a nearby supermarket. Nat getting that job was like being nominated for the Oscars, in my world. He even went through a job interview and job trial for it. But that was merely the endpoint of the ordeal to employ someone with Nat’s challenges. Disabled people and their families struggle and negotiate daily with the Powers That Be, the state and federal purse-string holders, the Deciders, to get a few hours of job coaching so that they can work even a little bit. The state Department of Developmental Services funds Nat’s job, as well as some Medicaid dollars (Medicaid is Mighty, please remember that. Never allow Medicaid dollars to be cut. You will be cutting people like Nat off from the world. You might as well find an island for them…) We count ourselves blessed that he has it. Work is an essential part of being human. I also feel for the 8 percent or so other Americans who are unemployed in this country, and I want them to work, too.

( Realted: Learn more at LaborLawCC.com and reach out to them in case you require any help or counsel regarding work and labour principles)

But today I was thinking about my grocery bagger.

That young man at Stop & Shop has this job and I want him to keep this job. I want him to pack my stuff, and I want him to shine at it. I also want his job coach to be kind to him. And train him properly. I don’t want anyone to complain that he’s too slow. I want to shout at everyone: “It’s okay! Just breathe, balance your checkbook, look at the Enquirer or Cosmo. Relax, and let him do his job.”

Because he could be Nat. They could all be Nat.    

That 22 year sadness is with me today, like yesterday. Nat came home with his light dimmed. He went to sleep right away. He didn’t want to do anything. Still, he watched and waited for me on the porch, to see the moment I came home from my bike ride. He watches for me, then when I pull up into the driveway, he walks back inside without a word. I hear the french door slide shut, I look up, and no one’s there. But I know.

I felt his face today and kissed his rough oily cheek to see if there was a temperature, but there was none. I asked him if he had a headache and he said a sharp, clear “no.” He wore a yellow Tour de France shirt — I went to Paris and all he got was that lousy tee shirt — and his hair was, as always, fluffy gold. He looks like a sunny meadow filled with haystacks under a blue sky. But that light was definitely dimmer. Why? Is he happy with his group home? Are the new staff good to him? Have they taken him on bike rides, for ice cream, or sat down with him to do Facebook? He seems to like Facebook.

But did I even do any of that? He didn’t want to ride with me. Ned took him for ice cream and I didn’t go. I was tired . I didn’t do Facebook with him, I forgot. He helped me with food shopping and he went on a walk with Ned, but it was all as if by rote, not from joy. I admit that I didn’t feel much joy this weekend, either, but that wasn’t because of him. I had slid down a rabbit hole, a pretty deep one, the kind I haven’t stumbled across in months, maybe a year. I wanted to get out of my body, the way you feel when you have a fever and can’t get comfortable. I just could not feel good. I rode 42 miles this weekend and still it took just plain old time to feel kind of like myself again.

This blog post was in me, hollowing me out like hunger. I just keep asking Ned, “is Nat happy? He didn’t seem happy.” And Ned, dear Ned, who always always takes care of me, said, “I think he’s happy.”

I tell myself that we have First World Problems. It’s not like someone is coming to chop off our heads tomorrow, to put it like Louis C.K. My problems are not knowing if my 22 year old glowing yellow son is happy. My problems are that I hated a conference I just paid a lot of money to attend. Or that my back hurts after 23 miles and why do I still gain weight if I ride so damned much?

But they’re my problems, and I should be welcome to them. I’m worried about my boy. I want him to have everything. On weekends like this it is just never enough.

Dear Swami,
Just read you FB post about hoping for the best, preparing for the worst and I knew I had to write you, even though I feel ill just typing this and am filled with dread.  My daughter is ten, reading, writing and typing at a first grade level, (though this is a woefully inaccurate way to describe her abilities.)  I have largely ignored the idea of preparing for her future, have my head firmly placed in the sand, too busy with just getting through the day, forget thinking and preparing for when she becomes an adult and quite honestly feel sick to my stomach even thinking about it!  So here’s my extremely reluctant question to you – What would you have done differently in preparing for Nat’s future, knowing what you know now?

–A Mom

Dear A Mom,

First of all, I don’t believe that you do have your head in the sand because of the very fact that you’ve asked these questions. It is difficult enough for autism parents to deal with the present. Dealing with the future — well, that’s a horse of a different color, as they say in  the Merry Old Land of Oz. But you are not in Oz, just like you’re not in Holland, or Italy, or Mars. You’re here on earth with a kid who has many needs, both special and not so. And you must, absolutely must, think about her future. That is the most basic point of our existence: to survive, and to carry on the genes.

And so, sooner or later, we have to plan, to think ahead. You ask what I would have done differently, though, and so you are asking me to go back to the past. The Swami is so much better at past than future. No one likes to beat up the Swami over past mistakes as much as she herself. So thank you for the opportunity, here I go.

What would I have differently? That’s easy. I should have been happy. Aside from all the other concerns that I will get to, being happy, enjoying the present with Nat and myself, and the rest of us was the paramount item on the agenda. The truth is, no matter what is going on, this is it, this life is all we’ve got. I’m a Jew, and so I do not believe in an afterlife, heaven, hell, limbo, reincarnation. I don’t put anything off, and that is because of my innermost beliefs.

Living in the now casts a glaring light on everything in ones life. You have to see it all for what it is. There’s no hiding. But this doesn’t mean that there’s no hope. There’s always hope, there’s always stuff that gets better. It’s just that you can’t live for that.

When I look back at every turn in my road with Nat, I wonder, “was that when I should have…?” But knowing who I am, what I know, the answer is, “Nah.” Because I always did my very best. I never gave up. Would being more consistent in Nat’s home programs have made a slight difference in his functioning levels? Would a gluten free diet have cleared his mind somewhat?

What the F does it matter? How can you go through life measuring everything? Why must all progress by quantified in order to count? The decimals in your bank account. The digits in your IQ. Your SAT scores. The number of letters after your name. The number of crosses you have to bear. All of that is a distraction from the moment. A moment in your finite life when you could have been happy.

Sure, you all should

1) see special needs consultants to determine the fiduciary aspects of your child’s future. You should

2) be on first-name basis with your state department of developmental disability. You should

3) be familiar with how to bug a state representative to sign onto one bill or another. You should

4) be thinking about who else can assist with your child’s guardianship way down the road, aside from or along with you. You should

5) be cultivating a special needs community of peers that your child can socialize with, perhaps live with. You should

6) be finding out about eligibility for SSI and Medicaid. Or SSDI. You should

7) be studying your child to discover what he/she likes to do and is good at so that you can help her come up with a job or career one day.

You should not be ruling out anything like work, college, marriage, fun.  Especially fun.  Did I mention Special Olympics?

And so A Mom, I don’t know what I really should have done differently, except that I wish I had relaxed a lot sooner and just smiled and enjoyed my life and my sons more.  It’s as simple — and as difficult — as that.

Love,

Swami

A song I wrote about Joe Scarborough, who thought to link a horrible twisted act of James Holmes to autism.

Sung to the tune of Simon & Garfunkel’s “Scarborough Fair.”

Are you listen’in to Scarb’rough on air?
He’s no sage on AutisticKind
Remember he’s mean and unfair
Got no right to autism malign.

Tell him to shove it with a sickle of leather
He’s no sage on AuttisticKind
And switch his job to reporting on weather
Then he’ll be much less of a swine.

Tell him to find me some proof on his stand

He’s no sage on AutisticKind

Away from the quacks and ignorant fans

Far away from Bettelheim.