Susan's Blog

Sunday, September 30, 2012

Autism Mentoring

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.

Saturday, September 29, 2012

Building a Home: How to Start

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.


Thursday, September 20, 2012

Time to Call Your Congressmen

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!

Wednesday, September 19, 2012


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.




letters | romney’s unguarded take on country’s citizens

Tax cuts for the rich are ‘entitlements’ too

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

Monday, September 10, 2012

I love “Love, Anthony” (Lisa Genova’s new book)

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.


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.



Saturday, September 8, 2012

Higher-functioning peer models: why?

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.




Sunday, September 2, 2012

Handling panic

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.