Susan's Blog

Saturday, January 23, 2016

Island in the Storm

Late January is a very still moment in the year, even when there’s a gusty storm outside. The world might be going to hell in a handbasket –  but there are some things that will never change: the way we want to hibernate, and turn inward during the dark winter.

My husband, however, fights this. Armed with lists on index cards, his laptop, and decaf, Ned remains full of purpose even as the wind rages against our windows. He always has a project going — most often it involves writing code or helping others fix bugs in their software, online. Even though he is sitting down, he is never still: he drums his fingers when they’re not typing, and he hums when he pauses to think.

When he’s had enough of his digital world, he looks around for our sons to see what they’re up to.  Natty is content with winter inactivity like me. In the normal weather the rest of the year, he and Ned will take long walks downtown. But in the deep winter, Nat will be on a couch under the pilled blue blanket, or burrito’ed in his own bed most weekend afternoons.

Ned lets Nat be on these January Saturday afternoons because they’ve already done a lot: Special Olympics basketball for two hours in the morning — I’d say Nat earns his nap. Ned, too, has earned a nap because a lot of that time in the gym he was barking orders at Nat — and others on the team. Ned’s never been a Special Olympics coach but he acts like one. He never misses a practice, and he stands on the court during their games. Well, often, too, he is typing at his laptop in the bleachers, but he’ll always have an ear out for what’s going on — especially if Nat is slacking off. “Nat why are you standing way out there? Get over with the team!” he’ll yell.

Once we’re home, Ned will turn to our other son, Ben. Ned won’t say this but he longs for the days when the boys really wanted to spend time with him. This is not a Cats-in-the-Cradle type of regret; he played with them all the time back then. It’s more that it is hard for him to stand inside this new phase in our lives. It seems like the one easy thing he can do with Ben right now is drive with him. Ben is seventeen so even this is a struggle, even though it is clearly in his interest to get his license. But one of the items Ned keeps in his list is getting Ben to practice driving. Needless to say, Ben has improved very fast.

Sometimes I despair over Ned’s regimented routines. I pout like a child wondering where on the index cards am I? But the thing is, I know I can get his attention anytime I want. If I told him I needed him to snuggle me right now, he would. If I told him I want him to come home from work early, he probably will. But I want to be barked at, too, sometimes. I want him to say, “Susie, what are you thinking of doing now?” Sometimes he does that, to be fair, but most of the time, we are orbiting each other, coming together for our coffee and our tv show. And bedtime. I feel, though, like I am the one who keeps track of the life of our marriage, and keeps count of when the last take-out occurred, when was the most recent dinner out, or how’s the sex been lately. I have never been able to guess what he’s thinking, or predict when he’s going to turn his love my way, but as the Allmans say, “Lord you know it makes me high” when he does.

I can get his attention, but I don’t try that much, at least, I don’t overdo it. On these cold days I find I’m craving my own company, baking or something like that. I try to get Nat to do this with me, especially when I’m baking cookies. Ben rarely spends time downstairs with the three of us; he’s in his ginger-candle-scented room cave, either “arting” or texting, snapchatting, whatever-ing friends. I’m comfortable with Ben’s independence, for the most part. It feels like it’s supposed to be that way. But I probably wouldn’t be this okay with that if he didn’t also just come over to me sometimes and show me something amazing on the computer.

Lately I couldn’t stand the cold that comes through our old window sashes — you can feel the breeze just standing near them. So I went around the house with old scarves of mine and stuffed them into all the window gaps. Weird that I did it, rather than Ned. There are some things that are just not on his list. I don’t mind. Now there are splashes of fuschia and jade poking out from curtains. I know that this kind of thing I do charms Ned. He’d never think to use beautiful scarves as a cold buffer.

We’re so different. He’s Nordic snowy silver and I’m Mediterranean terra cotta. I bake bread and splash stories on the screen while he types green on black. I’m impulse, he’s lists. I guess I’m his heat. And he is my shelter, he shapes me, he is clear thought and purpose. He’s the reason I can stay put, inside, and it’s okay.

 

 

 

Wednesday, January 20, 2016

When Autism Campaigns Become Camp Pains

Any social movement ultimately opens up to new discourse, different points of view. Autism is no exception. We’ve had the anti-vaccine groups vs. the medical/pharmaceutical/scientific institutions. We’ve had identity-first vs. person-first debate. We’ve had the Autism Speaks Awareness campaigns vs. the ASAN (Autistic Self-Advocacy Network) nothing-about-us-without-us/acceptance, not awareness, campaigns. And I believe each stage in the modern history of autism (starting in 1981, when Lorna Wing discovered Hans Asperger’s work and came up with the term Autism Spectrum Disorder), is important and must be faced courageously and thoughtfully. Wing’s contribution ultimately broadened the diagnosis to include many many people who — Steven Silberman points out — were otherwise marginalized in institutions as psychotic or intellectually disabled or criminal; or marginalized as weird, odd, crazy, nerdy, unlovable.

As ugly as these rifts have become, each phase, is important in the progression of autism as an important social movement.

The current rift is a new iteration of the AS-Self-Advocates division. The rift began with AS (Autism Speaks) using stories of suffering on the part of autism families to raise mainstream awareness of what families need.  The tension came from the AS emphasis on Autism-As-Child-Kidnapper. The positive sides of autism were not a factor, the idea of autism as identity was not actually known. I believe that Autism Speaks acted in the best interests of the cause of putting autism on the map. No one — other than autistics themselves, autism families, a handful of researchers — was thinking about autism, period, before AS came along with its empty stroller ads or Autism Everyday video. I give AS the benefit of the doubt, considering the pervasive view then, the ends-justify-the-means battle mode.

Before long, self-advocates who could communicate protested this attitude, rightly so, because it is potentially damaging to autistic people. The AS-type of autism hatred was a direct attack on who the autistic self-advocates were. This makes sense: if you harp on extreme and negative conditions of a disorder, then all people will want to do is eradicate it like cancer. And for a small, damaged minority, this view may translate to justifying violence towards autistic people (never ever justified.) Or, much more likely, for well-intentioned but misguided parents, questionable or even harmful, unscientific “cures” or treatments, like the use of chelation (which killed one child), or giving a child bleach enemas, or the drug Lupron that staves off physical development in the child.

These are horrible approaches, unjustifiable. But let me ask a question, without condoning anything harmful to a child:  Might there indeed be something environmental harming our children? This is a question worth asking, and it is a thread that runs through the anti-vax, anti-autism groups. That, plus the GI connection to some autistic-like symptoms — these came in part from the anti-autism group. Formerly discredited, now many doctors urge looking at intestinal issues and physical causes for behavior problems. Furthermore, there are immune-compromised children who cannot be vaccinated but should not be ostracized for their decision.

The new issue is a further evolution, and the term “Inspiration Porn” sums it up. We now have autistics who can communicate decrying the parent bloggers who appropriate their autistic child’s life story and use it as a way to promote themselves, or to get sympathy from other parents and groups. I’ve read tweets that express outrage at the pain parents describe of dealing with autism. The mostly legitimate fears for the parents’ own children get translated to callous, clueless unjustified whining.

This is a bloody split, because it gets right to people’s hearts. If you have a child  — or an adult loved one with autism who cannot communicate, is self-injurious, acts out, destroys things, runs away — you may have a very difficult time even believing that the self-advocates understand your child’s — and your — struggles. And the name-calling, the put-down of “Inspiration Porn” doesn’t help. The challenging behaviors and episodes are very real. Yet they are not the whole picture of autism by any stretch. And yet again they may be a very large picture of some families’ lives. Mine included, at several points. No, we don’t want society thinking Autism = Violent People. But we do want help for those families who are living with it. Yes. We. Do. We just need to find balance in how we talk about it.

There are self-advocates, too, who explain much more fairly and accurately the harms of ableism, like this one. I’ve learned about ableism and the ways I’m likely guilty of it, from the self-advocates like this one and from ASAN. I’ve asked myself what I should do to change, if indeed I am guilty of Inspiration Porn myself. The ableists see everything through the Poor Autistic filter. They want to force the mainstream, the neuro-typical. They see autism as inferior to non-autism.  Hugely important for society to see this, the wrong of it, the harm, the psychological fascism involved.

And so: there are no definitive answers here. I understand all the sides. I have friends in all camps. I’ve also seen my Nat evolve and my own perceptions of him have radically changed over the years. I also believe that things are not clearly sides at all, that this is one big Spectrum spectrum. There are grays here. There is an entire rainbow of viewpoints. The non-negotiables, of course, is inflicting harm on others. Or using your child without considering his/her feelings about what you write. Or vicious attacks on honest, worthy, awareness-raising posts. Each part has for better or worse contributed to putting autism on the public’s radar. Each group can and should learn from the other.  Let’s hope that that radar remains focused on resources and accommodations and scientific research that helps autistics realize their potential, and helps families connect with — and help, yes, help — their differently-wired loved ones.  Only with balance, bona fide science, courageous open-mindedness, and compassion for all of us will we move forward, faction-free.

Tuesday, January 19, 2016

Exclusion and Inclusion

It was the best of days, it was the worst of days.

An unexpected “no” to Nat came last week from Jewish Big Brother Big Sister. He had been deemed inappropriate for their friend-to-friend program. I didn’t know what to make of it at first. All I was capable of for that day was a choking rage and Facebook posts in all caps.

We’d gone to the interview a month or two ago — Nat, Ned and I — feeling like it was just a formality. My feeling is, to meet Nat is to love him. He has a sudden surprising all-out smile, and his lids draw down, and he loses himself in his own joy. There’s a brief, lucky moment when his Caribbean eyes meet yours, and let you in on it. And at this particular intake interview, Nat was really on top of his game — at his most compelling. He was so attentive, so obviously trying to follow the conversation. So happy. We had told him that we were talking to this woman because she ran a new social group. Nat loves social groups, he loves going out with people, anywhere, everywhere.

I was pleased with the way the caseworker interviewing him addressed her questions to Nat, not to us. Then Ned or I could support Nat’s answers, reframe the question for him, or whatever he might need to answer. This kind of conversation is a challenge for Nat because there are no parameters, and he really feels the most comfortable with familiar topics and clear choices for answers. Still, he was able to pull words out of air and answer sometimes. We filled in what he could not.

I was so proud of him during the intake that I’m sure my cheeks were red and hot. Afterwords, I was giddy like a girl. The caseworker was so friendly and seemed to say that of course this would work, that they have clients with all sorts of disabilities.

But I had it wrong. Her letter read: “I’m sorry to have to deliver disappointing news.  Numerous factors are taken into consideration as we review each individual’s eligibility.  Our main concerns are related to Nat’s safety in public and his limited communication/conversational skills.  The volunteers we engage are not expected to have, and most often don’t have, any experience working with people with disabilities.  We believe to accept Nat would be unfair as it is highly unlikely we could find a right match and would therefore create a frustrating experience for both him and you.

One friend offered to file a complaint — she’s a dynamo attorney. I didn’t want to go that route, at least, not right then. I wanted to understand the issue and figure out if they were at all right to turn Nat away. I was trying to be fair. But the way my hands were shaking and my throat felt like yelling, I think I already knew that they were wrong. You can’t call yourself an organization whose mission is “We introduce adults with disabilities to new friends in their communities.”

At JBBBS, we help to connect children in need to adult mentors, and we introduce adults who have disabilities to new friends in their communities.

In this way, and in the spirit of chazak v’nithazaik (strengthening one another), we seek to support and empower individuals and families to engage, to participate actively in the life of their communities, to live inspired and to inspire others that none may be lost to us.

- See more at: http://www.jbbbs.org/about/mission-2#sthash.GGnKnBtl.dpufv

And then you tell someone that he is, basically, too disabled for them. They don’t have any experience working with people with disabilities, she said. Really? No volunteers there can be taught how to communicate with Nat, how to connect with him and go for walks, movies, out to dinner…? No volunteers there have loved ones or friends with communication limitations? So what, exactly, does the disability part of their mission mean?

Was this even a legal response? Not if this group takes public funds. The ADA is clear on that.

The very next day, I got an email from Nat’s music teacher — he’s recently joined a group that practices together as a band but still has a lot of one-on-one instruction. Elaine, the teacher, talked about how the group was growing and soon we would need to divide into two bands. Immediately I went into defensive mode, because of what has just happened with Jewish Big Brother Big Sister. I cried to Ned, to my mom, and to my laptop, that I just knew that the decision to divide the groups was code for “put Nat in a less advanced group, he’s slowing everyone down.”

I talked to my mom, who was adamant that I not let this be, that I make sure the teacher knew how I felt about this kind of thing.

I am so damned tired of the way people rank other people, and find ways to close off their little groups.

I must also point out that I did not know if Nat himself would mind such a grouping. I did not think he would understand this kind of winnowing out, or if he basically just wanted to hang out with these guys, doing whatever.

I sent Elaine an email, asking politely if she was dividing the group by ability and planning on putting Nat in a slower group. I told her that I hoped not, because he’d had a lifetime of this.

Elaine wrote back quickly: Thanks for emailing me about this. Nat is doing fantastic in the group, and is our one and only student drummer right now! He has actually improved on the drums so much that we were all talking about his progress last night after group ended. He spoke up while we were picking out which song to play next, and requested we play Build Me Up Buttercup. He seems much more comfortable now that he has attended for several weeks.

Nat is a drummer! I could barely hold on to my heart, floating away like a big red balloon.

That is how it should be.

Folks, we all march to our own drummer. Nat is no exception. I’d advise Jewish Big Brother Big Sister to get with the beat – or beat it.

 

 

At JBBBS, we help to connect children in need to adult mentors, and we introduce adults who have disabilities to new friends in their communities. – See more at: http://www.jbbbs.org/about/mission-2#sthash.R7c9kuPC.dpuf

At JBBBS, we help to connect children in need to adult mentors, and we introduce adults who have disabilities to new friends in their communities.

In this way, and in the spirit of chazak v’nithazaik (strengthening one another), we seek to support and empower individuals and families to engage, to participate actively in the life of their communities, to live inspired and to inspire others that none may be lost to us.

- See more at: http://www.jbbbs.org/about/mission-2#sthash.R7c9kuPC.dpuf

At JBBBS, we help to connect children in need to adult mentors, and we introduce adults who have disabilities to new friends in their communities.

In this way, and in the spirit of chazak v’nithazaik (strengthening one another), we seek to support and empower individuals and families to engage, to participate actively in the life of their communities, to live inspired and to inspire others that none may be lost to us.

- See more at: http://www.jbbbs.org/about/mission-2#sthash.R7c9kuPC.dpuf

At JBBBS, we help to connect children in need to adult mentors, and we introduce adults who have disabilities to new friends in their communities.

In this way, and in the spirit of chazak v’nithazaik (strengthening one another), we seek to support and empower individuals and families to engage, to participate actively in the life of their communities, to live inspired and to inspire others that none may be lost to us.

- See more at: http://www.jbbbs.org/about/mission-2#sthash.R7c9kuPC.dpuf

At JBBBS, we help to connect children in need to adult mentors, and we introduce adults who have disabilities to new friends in their communities.

In this way, and in the spirit of chazak v’nithazaik (strengthening one another), we seek to support and empower individuals and families to engage, to participate actively in the life of their communities, to live inspired and to inspire others that none may be lost to us.

- See more at: http://www.jbbbs.org/about/mission-2#sthash.R7c9kuPC.dpuf

At JBBBS, we help to connect children in need to adult mentors, and we introduce adults who have disabilities to new friends in their communities.

In this way, and in the spirit of chazak v’nithazaik (strengthening one another), we seek to support and empower individuals and families to engage, to participate actively in the life of their communities, to live inspired and to inspire others that none may be lost to us.

- See more at: http://www.jbbbs.org/about/mission-2#sthash.R7c9kuPC.dpuf

At JBBBS, we help to connect children in need to adult mentors, and we introduce adults who have disabilities to new friends in their communities. – See more at: http://www.jbbbs.org/about/mission-2#sthash.R7c9kuPC.dpuf
Thursday, January 14, 2016

A Downer, But Honest

I wrote this two years ago.

I’ve been wondering lately if I can become a ghost after I die. I am not looking to die — not at all. It’s just that I have a severely autistic son who is 24 and I can’t imagine how anyone will look out for him the way I do. Even though Nat has two brothers, who are lovely young men — but at 16 and 22, they have begun to grow their own lives. I know they will be there for him in one way or another, but still, it is not the same. I am going to have to depend on the kindness of strangers.

Over the years, I have had to let go of Nat in one way or another. The first day of preschool I sent his father to go with him. I’m ashamed to say, I just could not go. The break had to be clean for both of us. It was anything but. My husband spent the morning out in the hallway, listening to him cry for us, wondering how to help him get through it, knowing that he could not go in. It’s hard enough explaining to a typically-developing child why he has to go to school, but how would we get Nat to understand? It felt like abandonment to me.  I don’t even remember how I spent my day — it is lost to me, as so many of my days felt at that time. I even remember feeling like a ghost when I returned with him soon after this, to our playground, hollow inside, watching the other moms and their perfect kids.

He got used to school, of course, and so did we. But the fear, irrational perhaps, was still there, its clammy breath at my back. I don’t even really know why I was so afraid, but I think it had to do with not knowing how he felt about it. My question — unanswered — is always, “how much of his life does he understand?” If one has such little language, such a choppy processing ability, how can we know what he knows? It is all so raw, a cut inside that just doesn’t heal. I grieve even now that he’s 24, because the limitations and the sense that I have somehow abandoned him never quite go away. I don’t mean to sound entirely gloomy, it’s not like that, either. Nat has brought me some of my life’s deepest joys. His first sentences, first friendships, first job — all of these milestones have been infinitely sweeter because of the long wait, the hope growing cold.

I felt a similar lacerating pain when Nat had to move out, to live at his school. He was nearly 18 then, and people tried to comfort me by saying that it was normal for kids to move out of their parents’ homes at 18. But I was just so ripped up at that point that their logical words just seeped right out of me. Just like when he was three, and off to school for the first time, he had to go. Living with him was threatening to destroy our family. We could not manage his anxiety and he became frighteningly aggressive and out of control with us at times — once, he attacked me at the subway platform and another time he broke a window with his head. But my bond with him never broke. Even when I was scared of him, and terrified for him, I always knew him, I always felt the soul inside. But clearly he needed to live with more structure, with trained people who understood how to help him calm down. But I was sick about it, for nearly a year, crying bitterly every Sunday when we dropped him off again — even though he was improving. I was sure that I’d failed him.

So how can I get my head around planning for my ultimate departure? There is no state mechanism set up to help parents like me, no bank of trustworthy mothers who would take my place. I hear that the state “takes over” if there is no place for the disabled adult to live, but what is that like? I can’t leave Nat’s life to chance. And how does this work for the thousands of others in my position? It is probably somewhat like taking over for aging, ill parents. Except that is kind of a normal stage in life. There has never been anything normal about the way I have had to parent my son. My connection with him, though strong, has always been amorphous, spiritual, heart-to-heart. Our relationship is always present tense, it resides in being with each other, breathing the same air together. But when I’m dead, that connection will be severed. He won’t be able to know me anymore; we won’t be on the other side of the door, or here for him on weekends. Perhaps the most horrible thing about that, my deepest, bottomless fear, is that in being dead, I won’t even be able to care.

 

Monday, January 11, 2016

Not Perfect, But Very Good

Last Saturday night I did not want to cook. I had been good all week, making stupid boring dinner every single day — well not Tuesday, okay, pizza (salad for me) — but I was just lusting for dinner out. Dieting all day. All week. All year. We settled on Cheesecake Factory, can’t be too fancy with Ben and Nat. Cheesecake Factory is middle ground. Large, comfortable seats, fairly interesting psuedo-Egyptian-Southwestern theme going on. No weird smells, food’s always good.

We got there and it was a 50 minute wait that became an hour. We were so hungry, and standing around the mall with the vibrating alarm in hand, waiting for it to come to life. Everyone else hanging around was waiting, too. It was weird — they were all so friendly, and relaxed, and so were we. One family was taking up most of the seating but my knee was killing me, and when the dad got up, I sat down, smiling and apologizing. No problem. Then an old man with a cane came over and I got up. “You sure, Dear?” he asked. So sweet.

By the time we sat down, Weight Watchers had become Wait Watchout in my head. I did not care. I ate and ate. Nothing was bothering me. Ben was happy. Nat was into it. He looked at the menu and said, “Pasta.” As soon as the waitress came over and asked about drinks, he said, “Sprite.” It was just perfect.

We even had a shared enemy — the woman behind us. She was puffed up with Restylane, and her entitled teenage girls were brats, off shopping while their dinner was coming. Who cares, really, but it gave us something to laugh about. The girls even lost the mom’s charge card. “I don’t know!” they screamed. “Well go back and retrace your steps!” the mom yelled, exasperated. We just kept smiling smugly at each other. My boys are so great, I thought. They never shop. Ha ha. Just me.

It was nice to be Mrs. Obnoxious with my grown-up, well-behaved sons. It’s unusual. Often I envy the other tables, families with three little girls, for God’s sake. No, I don’t want girls but they just look so pretty and perfect. My boys are scruffy, big men. Gloriously male. But jeez, how did I get so old?

Well, perfection is only a dream. The false note came when Nat wanted another Sprite and Ned countermanded it. He interrupted and told the waitress no, treating Nat like a child. Okay, Ned is his father and does have to protect Nat to keep him healthy, but still — Nat is 26. I whispered to Ned: “Next time talk to Nat about how it’s probably too much sugar, suggest water, rather than speaking for him.” Ned nodded. “He’s a man, after all,” I said. “You wouldn’t do that to Max.” Inside I burned for Nat being patronized, even by his loving father.

Later that night I had a dream that Ned was making Nat eat a potato, uncooked. I told Ned the next morning and said that I didn’t like how the Sprite incident had gone, and the dream was about that.

The sad thing or maybe the happy thing is that Nat moves on. Is it because he’s used to being told what to do, or is it because he’s not oversensitive like me?

Well, there’s always a spot that mars the perfect surface in this life. So sometimes you just have to fix the hurts with treats. That’s what I do. Food = love in my sweet family. And when it came time for dessert, I insisted we get the Chocolate Tower Truffle Cake and a coconut chocolate cheesecake, dammit. Forkful after forkful of the creamy sweetness, your teeth sink in just right. Let it spread like frosting over your dear heart, my Nat. And Ned, who probably felt bad about what he’d done.

I didn’t even feel sick after. It was just enough — too much is always enough.

I don’t know, the outing was just so unexpected. Usually Ben doesn’t want to go, Nat is sloppy and eats too fast. Ned gets grumpy waiting for the check. I get stressed out about which is the least fattening entree. I then order the wrong thing.

Not this time. We just went in as ourselves — and it was as (almost) as smooth as that cake.

Friday, January 8, 2016

Don’t Lean In, Reach Up

Tolstoy did not say, “All happy parents are alike. All unhappy parents are unhappy in their own way.” But if he had known the autism parents I know, he might have.  I believe that this unhappiness is not a bad thing, either, because it is the energy that fuels the changes in their situation — and then, the creativity. I have not done a formal study of this, I’m not a social scientist, but I have written a book and interviewed many autism parents. And I have observed, by and large, that it is the desperate autism parent that can be the most effective autism parent. Of course this is likely true for any disability. The Down Syndrome families, the CP families, they are no shrinking violets. But autism is the disability I know, and that is the disability I write about.

Let me reframe a bit by changing the designation “unhappy.” Disability does not equal unhappy, no way. But there are many autism families and autistics themselves who want something different, who want productive lives. The model available to guys like my son Nat, who is autistic and communicates outwardly only sometimes — he doesn’t care for that kind of activity, he prefers his own thoughts as well as direct physical movement — the day time models are largely adult babysitting. This is because the funding comes from Medicaid, who is like your sweet generous grandma, chock full of desire to give and help, but limited by her anachronistic knowledge of the world. My Grandma Esther Senator Gross, God bless her, with her ubiquitous huge white leather gold studded purse, full of her good silverware (“it shouldn’t get stolen when I’m away”), chocolate candies as big as a fist, tissues, and rolls salvaged from the Early Bird special would give you the shirt from her bag. Stuff that doesn’t really fit with your life so far, but you are still grateful. Without Grandma’s special treats, you’d have nothing but your entitlements from your parents; in my dad’s words, “You are entitled to three meals a day, college, and a wedding.” Dad was the Federal Government in my family. Once the wedding was over and paid for, I was supposedly on my own. Luckily my Dad is an ultra-liberal institution and he believes in supporting many of my endeavors in one way or another. (If you’re not reading this with a smile, you’re doing it wrong.)

Medicaid, however, began as medical insurance, but now is being used for all sorts of programs that do not fit under that category. And yet these programs are bound by Medicaid’s rules: its funds must be used for therapeutic purposes. So Long Term Support Services like Day Habilitations, are an entitlement for those who qualify for SSI (Supplemental Support Income) If a state does not have Medicaid Home and Community Based Waivers available, (and most do, but the funding is very tight), states must offer some kind of non-institutional setting for people with longterm disabilities like autism. But these non-Waiver settings are often not so great. They will say they are therapeutic, but this may consist of a group sitting around a table doing puzzles together (“social skill-building), sitting on a physio ball (gross motor exercise) or coloring (“small motor development”).

So: to generalize in non-expert layperson terms, it is hard to get Waiver money, which pays for job coaches and self-determined, creative day programs with nice small staff-to-client ratios. So if you don’t get Waiver money at age 22, and you don’t have a job you can keep after you graduate, you will likely go to a day hab (not a Waiver-based day program). What we want is more Waiver money, or for day habs to be offer more options for our guys, higher level pursuits. Why can’t Medicaid day hab (non Waiver) money be used to pay for continuing education or job supports of some sort? Or simply job-training of some sort? But what I hear, they cannot because of the Medicaid “rules.”

My knowledge ends here, but that may be enough. It is likely enough just to fuel your interest as an autism parent. If you think your school system has provided sub-par educational supports for your child — and that’s with an actual federal law mandating such — then you will feel kicked in the face when you go and visit day habs in your area (if you don’t get Waiver money).

The autism family whose guy has gone through Early Intervention, Pre-K- 12, through 22, will not be satisfied with the offerings in adulthood. The modern middle class general population autism parent who has discovered supported art, drama, math tutors, private specialists and therapies, social groups, Special Olympics, Challenger T Ball, Surfers Healing, etc., or some combination, or even one of these auxillary activities will want their guy to go to college, or take music classes, or work in an office, a store, a bakery, a car wash, a hospital — you name it, our guys will likely be able to do it with training, support, and rachmunis, (Yiddish, which to me means, from the Definithing website: “That which causes one to correct a wrong that is causing grief or pain to another.”) Compassion, doing the right thing. NOT PITY. Just — getting your act together and being a good person, Goddamitt.

The only way it is going to happen is when the great wave of autism families and autistics themselves question the authorities and say, “Hmm. There has to be something more. Let me ask my lawyer…” Just like you did during the school years. Or better yet, call your state rep or state senator and tell them that another Senator told you to reach higher.  You deserve more than a wrapped roll from the Early Bird Special.

 

 

Thursday, January 7, 2016

What Makes a Life Worth Living?

My latest piece is on the website MariaShriver.com. It asks, “what makes a life worth living?” Enjoy!

Friday, January 1, 2016

A reason to raise a glass

On New Year’s Eve, my son Nat drank some spiked lemonade and passed out after midnight — from exhaustion. His roommate John texted me the next day to tell me. I don’t know if there’s ever been a time in Nat’s 26 years of life when I have not been worried about him, but when I heard about Nat drinking, I was not. In fact, I was happy. This felt like a rite of passage. Nat partied with friends on New Year’s Eve.

I am not as odd as I sound. Nat has fairly complex autism, and so his social development has been hard-won. So even a night of drinking might actually be cause for celebration in my family.

Most of the time I need to read Nat without words,  through a combination of watching his body language, and listening to his very quiet unintelligible self-talking. When those strings of Nat-words first emerged in early childhood, they seemed to loop and coil in the air, playful, joyful, and we called it “silly talk” — a deceptively lighthearted term for something I actually feared like a disease. Surely this was a sign of deep disability, far worse than we had realized when he was first diagnosed. And it was a call to arms for me. I had to get rid of it, or he would never be okay.

This began the long hard era of battling autism. Nat’s teachers at the time exhorted us to engage him, as much as we possibly could, fight for him, keep the dragon at bay. Interrupt, channel, redirect these impulses of his, dam up the ever-opening tributaries of aberrant, abnormal behavior. Our kid had to be forced into normal, or else he would be lost.

And so, raising Nat was exhausting, debilitating — for me, but far worse, for him.  What is a child to make of always being given the message that he is off somehow, that every sound that comes out of his mouth had to be caught by watchful Mommy, and pummeled into something else?

I don’t know when the light went on in me, and I realized I could stop. “It” wasn’t working, anyway. Silly talk will out. And what a relief it was to finally understand that, and to let go of all the fighting. Suddenly I knew in my core that yes, my job as Nat’s mother was to help him be the best he could be, to educate him about how to act in the world, but my main purpose was to let him be who he was.  One way that I could help him do that was to arrange for him to live away from me. Since the age of 17 Nat has had roommates and caregivers, and I have been a visitor in his life. His teachers and caregivers took over from me the work of teaching him independence.  This positive development has been heartbreaking to me, though, because a part of me still fears that I am doing wrong, that I have to be the one in charge of who Nat is.

Every now and then, though, I understand that the truth is, I don’t. When I get happy news from John, who is also his caregiver, I realize that with or without “normal” words, Nat is his own man. I’ll drink to that.

Friday, December 25, 2015

Christmas Story

You can listen and read my story from Tom Ashbrook’s “On Point” show here. My story is about taking Nat to my in-law’s Christmas dinner, and a sweet thing that happened as we were getting ready to eat.  Merry Christmas!

Tuesday, December 15, 2015

Slow down. Just stop.

Recently while getting on the checkout line at a local supermarket, I sized up the backlog of items on the belt and the cashier and the packer — as I always do. It was around 3:30 in the afternoon, the last of the winter light thinning out, and the traffic outside was picking up. I was starting to feel the weight of the evening ahead sinking onto my shoulders. I wanted a quick checkout. The cashier had bright brown eyes and a cheerful round face peaking out from a head scarf. She had a strong smile and confident eye contact that told me all I needed to know. This was a good line to be in.

But then I saw the packer, moving as if in slow motion. Her mouth was slack on one side. I heard her explaining something to the customer ahead of me, something that did not need explaining. Ohh, I thought. Disability.

But, yeah, I have a son with a disability who also works in a supermarket, and I wanted to give this woman a chance.

My checkout went quickly, and before I knew it I was burrowing through my handbag for my wallet while the packer laboriously loaded my two bags. I was just writing the amount in my checkbook when I saw her hoist the bananas into the paper bag already stuffed with boxes of lettuce and the pineapple chunks. The bananas sat uncomfortably perched on the lettuce and started to tip. I reached out and quickly set it right, but the paper handle tore and the whole thing fell on the floor. She and I watched and waited for the disastrous splat. As the round plastic container of pineapple wheel to a stop, I knelt down and started stuffing everything quickly in to the ripped bag, while the packer exclaimed over and over, “Oh, no! That was my fault! I should have listened to you!”

I hadn’t actually said anything except maybe to murmur about the heavy bananas being tricky, but she was just horrified at herself. The more upset she got, the calmer I acted, determined that this would not be a problem. I said, “No, don’t worry, everything’s fine. Look,” and I gestured with the lumpy bag in my arms. She remained unconvinced and sad. I said again, “It’s fine. No worries,” and I walked out struggling with the bag, pretending I wasn’t.

I got to my car, with a prickly anxiety catching on my thoughts like thorns. What would happen to her? Would there be trouble? Probably not, because the store had to know about her challenges. And also because of me. I had tried to make the whole thing look like nothing, when really, as checkouts go, this was not that great. To have the customer fix the packing job, and then kneel down on the floor picking up her own groceries. To let her leave with a torn bag. In that little supermarket world, this was bad stuff.

And what if the customer hadn’t been someone like me? I got to thinking about the way the world is, beyond those automatic doors. People want things just so. We are all in a hurry — but to get where? Nowhere, really. Almost everything can wait, when you think about it. Yet we tailgate each other on the road bearing down on our horns, when we’re just trying to get home. Which can wait. Or to work, to an appointment. If we’re late there are consequences. So we have to be obnoxious, because we’re all a big bunch of dominoes. One tries to stand still, but then another one knocks into us. We just can’t stop. We can’t stop our twitchy brains or our wiggly fingers from pulling out the phone and tapping away. We are like sharks, we have to keep moving. Even sitting at a stoplight we have to do something.

We are a society that cannot slow down and breathe. We don’t allow ourselves to think. We expect everyone to move at top speed, ultra competent, no mistakes. But where are we all going? What is all the rush and rage about?

The days are growing shorter. Our hearts are racing, our teeth are gnashing.We say that this is the world, though. it’s a tough place. We have to live in it the way it is. Sink or swim.

But I think it can be different. We can slow down.

 

Our packages may burst. So pick them up. Because, really, we should be bursting. With joy. That we are even here, alive, today.

Monday, December 14, 2015

Book Me!

I’m now getting book signing and keynote offers for spring 2016 for Autism Adulthood, my book that will be out April 2016. Please let the disability/autism organization you love know that I am ready, willing, and able to do powerpoints, formal keynotes, informal talks, workshops, and readings. My topics are Autism and the Family, Autism and the Pursuit of Happiness, and of course Autism Adulthood. You can email my publicist Ashley Vanicek, avanicek@skyhorsepublishing.com, or me directly: susan@susansenator.com to make arrangements and to find out specifics about what I do.

Wednesday, December 2, 2015

The Rise of Individual Nat

I feel proud — probably smugly so — of my sons’ personalities and consciences. They share most of Ned’s and my values (caring about family, being kind and generous, trying to be a force of good in the world) and so I feel like we did the right thing by and large, working so hard every moment to teach them right and wrong. I know, however, that I get obsessed about my children. I know that my generation of parents is like that, though; it isn’t just me. In grad school I remember studying various theories on the evolution of the family — this professor’s particular bent was that the family is a social construct and it’s different everywhere, in every era, and social class. The research that stood out the most for me was Princeton historian Lawrence Stone’s, which theorized that affection and attachment, and the lavishing of attention on children did not occur in England until the 18th Century.   In addition to keeping children alive long enough to bond with them, the British middle class was doing very well economically. According to the Journal of Social History, Stone also found that the bourgeoisie was marrying often for love, rather than economic or property considerations. Stone called this “the rise of affective individualism.”

I bought Stone’s ideas, and so I know that my attitude towards my boys is not something shared eternally and everywhere. I especially remember watching my peers with their babies, back in the 1990′s when Max and Nat were little. So often I felt angry at the other parents for being lax, for letting “Little Precious” do anything they wanted — even if meant letting them take Max’s shovel right out of his fat little hand. I’d hear a lot of rationalizing from these parents; one even said to me that Max had to learn to be more assertive. Actually, another said the same about Nat. For years I thought it was Nat’s autism that she was scolding, and that was highly unfair. But now I realize that Max was blamed equally for, essentially, being the victim.

I suffered for my gentle children, even while I continued to reinforce high standards for them. They weren’t allowed to hit, they weren’t allowed to mess up a room without taking some responsibility. But my end of the deal was that I wouldn’t just sit on the couch and bark at them, nor would I hit them. I had to be off the couch as much as possible, on the floor with them. Guiding their language, their values, their morals. Calling them out for anything unkind or violent.

So maybe I was the Queen of Precious Children, after all. But I don’t really think so; my purpose was to teach them to be moral, ethical people, never cruel, always thinking of their actions. The lazy laissez-faire parents around me did not seem to realize that their goals for their kids had to be reinforced as much as possible. Every little interaction was potentially a teaching moment. It sounds tiring, and tiresome, and maybe I was. I know I was tired a lot, and did not have many friends when the boys were little. There were so few parents I could even stand to be around, because of the way they did not take responsibility for their kids’ behavior.

The first live theater we took the boys to was The Lion King, when they were around 2, 8, and 10. I remember seeing all the likely typically-developing kids around us misbehaving during the performance, with total impunity. I don’t mean that they should have been punished, I just would have liked for their parents to have given a shit. And there I was, antennae stuck way out, attending to everything Nat especially did because I wanted to be sure that he did not get away with “bad behaviors,” that clarion call of shame to so many autism parents.

It occurs to me I have had extra high standards for Nat because of my fear of public shaming.

It’s only later in life that I have learned to give everyone a break. Especially Nat. I now know that sometimes It’s the Disability, Stupid; and other times It’s Just Him Being Human, Stupid. Sometimes I need to separate what he can’t help because of autism and sometimes it’s what he can’t help because he’s simply having trouble.

Even in my first book I was certain that at age 2 1/4, when Max was born, that Nat’s autism was finally fully unsheathed, as was evident by the way he would cry and cry everywhere we went, stay in the stroller and not play, refuse to go to new places, refuse to be soothed. In my writings and in my talks all of that was Manifestations of His Disorder, and how I wished I had known what to do then.

Recently, however, I was remembering how another bout of Nat’s difficult behavior spiked when Ben was born, too. So much so that he was expelled from school, all of our caregivers quit, and we were afraid of what he might do to us. We all scratched our heads in bewilderment, wondering why, why, why. Was it the change of seasons, the lack of daylight? Was it preadolescence? Was it his diet? Was it behavior we had to crush with Neutral Ignoring and Rechanneling, While Looking For Moments To Reward Him for Good Behavior? Sheesh.

I had a flash of insight just a few days ago. Both difficult periods occurred when Nat’s baby brothers were born.

All my vigilance, obsessive wondering, suffering to figure out how to help and work with this difficult autism, and perhaps, just perhaps, it was all about Nat trying to adjust to having siblings. Imagine having a language and communication deficit and sensory overload and trying to adjust to someone else being on Mom’s lap, all the noise of babies, and CHANGE. Through my broken heart for my little Nat, struggling just as so many other kids do, for the same reason, I could also feel some relief that I was now seeing him just a little more clearly than ever before. And what I was seeing was just a boy. An individual, a good person despite difficulties, whom I could be proud of, love, and understand (eventually). Well, better late than never.

 

Sunday, November 29, 2015

A Wonderful Housing Workshop

My friend Michael Weiner’s monthly workshops can benefit *anyone* transitioning into the Post-22 disability world — and this particular one is about a Federal program (NOT JUST MASSACHUSETTS)! Here is the infom, but you MUST RSVP to Mike if you are going! Seating is limited. But the event is free.

Our next meeting is scheduled for 12/9/15 (Wednesday) at the Wellesley Unitarian Church, 309 Washington St., Wellesley Hills. It will be from 7:00 – 9:00 PM. The topic will be the Section 8 Housing Choice Voucher program. The presentation will be led by Mr. Steve Merritt, the executive director of the Norwood, MA Housing Authority, and the Senior VP of NAHRO (National Association of Housing & Redevelopment Officials).

Here is an example of the types of questions we plan to discuss:

What is a voucher?

How do you apply?

What are eligibility requirements?

How long is waiting list, and how does centralized waiting list work?

What preferences do most PHA’s use? What is the difference between the Section 8 program, and public housing (federal and state)?

What happens if a voucher if offered?

How long do you have to use? Where can you use?

What are “reasonable accommodations” under Section 8 (i.e. higher rent and utility standard, longer search time, live-in aides, renting from relative, reinstatement on waiting list)?

What is a “family unit”?

What is FMR (fair market rent), and how is it determined?

How much does voucher holder pay for rent, and what is subsidy?

Where can you use a voucher?

What is difference between a one, two or three bedroom voucher? Can you switch from a two bedroom voucher to a one bedroom voucher?

What is the difference between a tenant based voucher and a project based voucher?

Please RSVP to Mike Weiner if you plan to attend. Thank you, and enjoy the remainder of the long holiday weekend! Michael W. Weiner Financial Advisor Special Needs Commonwealth Financial Group 101 Federal St. (Suite# 800) Boston, MA 02110 617-312-5115 (Cell)

E Mail: MichaelWWeiner@financialguide.com www.commonwealthfinancialgroup.com

Wednesday, November 25, 2015

Early Praise for My New Book

Pre-order my new book! And see early praise, below!

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You can now pre-order my book, Autism Adulthood: Strategies and Insights for a Fulfilling Life. And thank you, John Elder Robison for a lovely foreword, and Ron Suskind, Arthur Fleischmann, Claire LaZebnik, Laura Shumaker, and Temple Grandin for beautiful blurbs. Pre-Order here.

See what is being said by beloved autism authors:

“In this book, like her others, the wonderful Susan Senator gives voice to those who are too often voiceless — folks with ASD who seek what they deserve — lives of purpose and possibilities.” –Ron Suskind, Pulitzer Prize-winning journalist and bestselling author of Life Animated, A Story of Sidekicks, Heroes and Autism.

“There is a huge need for books to help individuals with autism make the transition to adulthood.  Autism is a wide spectrum, ranging from a brilliant Aspergers at a technology company to an adult who cannot dress himself. These individuals need very different services.  Susan Senator describes successful journeys, as well as her own with her son Nat. I highly recommend this book for parents and teachers who are guiding individuals in the middle range within the broad autism spectrum.” –Temple Grandin, author
The Autistic Brain
Thinking in Pictures

“From the introduction, Autism Adulthood: Strategies for a Meaningful Life will bring you to that dark place parents of young adults with autism fear. But just as quickly, Susan offers practical advice through story-telling and concise, how-to strategies that will leave you feeling optimistic, hopeful and back in control – all any of us can ask for. A thoroughly readable and important book.” –Arthur Fleischmann, author of Carly’s Voice: Breaking Through Autism

Autism Adulthood is a book I will be recommending to every autism parent I know. Senator is as warm as she is wise, as thoughtful as she is knowledgeable, as compassionate as she is informative.  Her rallying cry of “All we can do is love each other” will resound in any parent’s heart. Senator loves fiercely–which means she does everything she can to ensure the best life and future for her adult child with autism. This book will inspire the rest of us to do the same for ours.” –Claire LaZebnik, author of Overcoming Autism: Finding the Answers, Strategies, and Hope that can Transform a Child’s Life

“Susan Senator’s book is a must read not only autism parents but for disability parents in general. Parents need to pick up this book early and read it often to prepare practically and emotionally for the future. It is well researched from a mother’s watchful perspective. It will get you thinking hopefully about the future from the start, and is full of tips and tricks that will save you time, money and heartbreak.” –Laura Shumaker, author of A Regular Guy: Growing Up with Autism

Sunday, November 22, 2015

One Small Step For Everyone Else, One Giant Leap For Nat

There we stood, Ned and I, just behind the line of the football field at Nat’s Special Olympics championship games. We were frowning a little, then smiling, then grimacing. We had layers and layers of sweaters and coats on to guard against the raw gray air. This wet cold seeped into every thing, even though it was not raining.

Play after play Nat dropped the ball or didn’t even try to catch it, walked slowly up and down the field, and stayed away from the other team. He’d be subbed out and would smile, so I knew he was enjoying himself. But he sure does not understand the game, or what he is expected to do with the ball on any level.

Ned’s and my frustration stung as we watched his one-on-one — a unified (i.e., non-disabled) player — just kind of talking to him in a normal voice, too many words. Might as well have been French or Hindi. Nat just will not process that kind of stream of sentences, it just roars on past.

I don’t want to feel this way, this tiring tug downward. But I did. One of the parents kept catching my eye and splashing me with sympathy. I gritted my teeth and gave nothing back to her. I. do. not. want. your. messy. pity. Pity can sometimes make the other person feel shame. God damn her for making me feel shame.

Then it dawned on me. Nat is pretty much the most disabled person on his team. Yes, it’s true. The rest of them can talk, can understand the basic rules, and most importantly: they understand what they are supposed to do and they want to do it. Their comprehension buoys their motivation.

I realized next that Nat is likely among the more disabled people in Special Olympics. The diagnosis of Intellectual Disability can mean you are only slower to process, or perhaps your language is affected and hard to understand. Maybe you have Down Syndrome and so much of your disability is physical or about delays. But your social powers in all of these cases are still intact. I don’t know enough to state this empirically but I know what I see. Even those who appear very very disabled in how they move or how their faces are arranged, or how they sound, they are still able to be a teammate and they know there are rules and roles in the game. I don’t think Nat is at that level.

For some time now, I think I had forgotten about Nat’s disability. Not on the surface, but kind of deeper down. You would not have noticed. The slogan “Presume Competence,” puts forth an attitude I’ve long worked towards. Now I’m wondering if it can go too far. All Nat’s life, he has tried and tried to do what is asked of him, and he has learned over long periods of time what to do in so many areas of his life. It is not about his ability to actually do the thing, execute the task.

Nat’s disability, the black hole at the center of it, is that he does not realize his part in things. He does not realize what is behind getting the laundry up from the basement or unloading groceries for me or going on a walk to a favorite destination. What is behind these things is will. Free will. Nat does not understand in the most basic way that he can be the origin of an action, a conversation, a want, an idea.

He does not know that he is the master of his own life. Nat’s disability lies in a pathological passiveness. Not laziness, not intelligence, not physical know-how. But generating original action. That is what he struggles with the most. So it really hurts when people say, “Maybe you should show him how to type.” Or “Maybe stop prompting him.” Or “put up pictures and lists telling him what to do next.”

It hurts that people do not understand my biggest failing as Nat’s mom: I do not know how to teach him how to do things for himself because the very nature of teaching him what to do is that he learns it still hooked to my teaching role. He does not detach his own desires and acts of fulfillment from me, and others. It is a terrible paradox. I cannot say, “Nat if you want to eat, you can eat,” because to him that means “Nat, you can eat now.” The “if you want,” is cloaked behind something in his mind. It’s just like Who’s on First, but it’s not funny. It makes me so sad. It’s like when I could never teach him the correct pronouns, either, for similar reasons. I can’t say, “No, Nat, it’s not me who wants it, it’s you!”

“You want it.”

“No Nat, you mean ‘I want it.’ You, not me!”

“You want it.”

I want it. To get better. But will it? Can he make this leap, across that giant field?

Does he have to? If this is his disability, this is his disability.

But I think he wants more power in his life. I think he knows that he is on the sidelines, even in the game.

 

 

Thursday, November 5, 2015

The Utter Seriousness of Play

Sometimes the thing you expect is just not in the cards. Latest example: I co-hosted an autism-friendly Halloween party last Saturday with two other friends to raise money for a favorite cause, Mass Advocates for Children’s new Autism Center. MAC is known for helping families with legal issues, as well as their research and statewide autism advocacy. They focus on low-income and minority families who may be less able to navigate school system special education than others.

When Jude, Tere and I first sat down to plan this we were thinking primarily of the little kids with autism who might have a hard time with the typical Halloween tradition of walking haphazardly through a neighborhood in the dark, in a strange likely uncomfortable outfit, ringing doorbells of strangers, yelling “chickacheet” or some other nonsense word, choosing among candies, and then NOT BEING ALLOWED TO EAT THEM. A sensory nightmare, but my favorite holiday all year. Dress-up and candy were and still are some of my absolute happiest things to experience. As a kid I planned my costume months ahead. As I got older I figured in clever layers for warmth so that my mom would not ruin my costume with my stupid snow jacket. And in my forties I started bellydancing, so that I could always surround myself legitimately with colorful sparkly costumes.

But Nat did not get Halloween and it was a great sorrow of mine. A selfish sorrow, because did it really matter that he could not see the good in the strange rituals illustrated above? Of course not, but I had had such high expectations of the fun I’d have with my kids on Halloween. Eventually Halloween became a new behavioral task, where we aimed to have Nat wear some form of costume, say the appropriate words to the stranger who opened the door, and wait til we go home to eat the candy. Whether once around the block or only three houses, if Nat could do those things, we would, as Ned put it, “declare victory and then get the hell out.” But over the years, Nat figured out Halloween and mastered it. He always wants to be Zorro. He even shopped for his sword and hat — with a fervor I have never seen in a store — and he insists on it every year.

So planning for this party was not about Nat’s needs. I knew he’d enjoy it. This was for the kids who might like some aspect of Halloween, and could enjoy it in their own way — stuffing themselves with treats while leaping all over the yard in a tophat, getting their pictures taken in the special photobooth, jumping in the bounce house. And I was the fortune teller: a perfect way to wear a gorgeous garish costume all day long.

This role was perfect for me in another way. About 20 years ago I learned how to read Tarot cards. I did not believe in them, however; I may be a flaky Libra, but I could never bring myself to be convinced that there was some greater plan for any of us, no matter how prettily or shockingly coincidental the cards shook out. I did, however, find that the cards were a good tool to organize my thoughts and feelings, to determine what it was that was bothering me at the moment, or even to figure out what I wanted to do about a given circumstance. And if nothing else, they were fun.

I removed every scary card from my deck, like Death, or The Tower, anything with sorrow, figuring that I would be reading for children who might be more literal than most. I set up my little round table with a lace tablecloth and silver tulle that glinted like diamonds in that blinding fall sun. As if planned, dragonflies kept landing on the shiny tabletop, adding their magic. I told people that I usually just deal one or two cards and somehow the kid’s fortune would always end up being something like, “Oh, wow, this shows that you’re a good student, is that true?”

What I did not expect was that most of my “clients” were the parents, not the kids. Many of these people were autism parents I know in one way or another — our community’s connectedness is international and legendary. So there I was, in my splashy, bindi-infested regalia, asking them to cut the cards in the actual Tarot fashion, and doing an abbreviated, partly made-up form of a real Tarot layout. Because these were adults and people I cared about, I found myself trying remember the basic meanings, and if not, to offer ones that made sense. The parent would listen with wide eyes, and think about each card I interpreted. Sometimes I would pause, thinking, “Oh man that sounded stupid,” but then the parent would consider it and tell me what it meant in his or her life. From that, the reading would grow more intuitive, and then, more — well, accurate. Parents were asking me if they should move back into the corporate world or work from home, or if I could affirm great love in their marriage. and I found I could help them without telling them what to do. Sometimes we’d ignore the cards and they would just pour their heart out to me.

At first I was taken aback by this naivete. I thought to myself, “don’t they know it’s just me?”

But of course they did. And the more people who sat before me, the more connected I felt to them, and my readings. I started taking it all more seriously, because they were. Somehow the quiet corner of this energetic party provided a feeling of safety for them, and the deck of cards a bridge between us. I realized something: they just wanted someone to talk to, outside of their usual life. Somehow, being me-but-not-me helped create a connection that left every single one of my readees smiling. “Eerily accurate,” a few people said. But it was not because of me. It was because of that moment in time, the day. The special gathering of our special kids, so well-loved, so weighted with our hopes for them, provided us all with a flash of time when we were not serious, or worried, but winged and light — and  utterly completely ourselves.

.Photo Oct 31, 1 51 07 PM

 

Sunday, November 1, 2015

An Autism Authors’ Tea

Come to a lovely Autism Authors’ Tea, featuring poet Scott Lentine, Aspergian author and blogger; Jess Wilson, famed and beloved Diary of a Mom blogger; and me! I will be giving a sneak preview reading from my forthcoming book, Autism Adulthood: Strategies and Insights for a Fulfilling Life, (Skyhorse, New York City, April 2016) At An Autism Authors’ Tea in Newton, Massachusetts, 11/8, 3:30pam!

2015-07-28 15.55.07

An Authors’ Tea To Benefit Mass Advocates for Children, Autism Center.
featuring

Scott Lentine – Poet, blogger, advocate
Scott is 28 years old, with high functioning autism (PDD-NOS/Asperger’s). A graduate of Merrimack College with a degree in Religious studies & a Minor in Biology, Scott shares poetry & prose with his blog & Facebook readers about the impact autism has had on his life. Scott has appeared at numerous events as an advocate for individuals with autism.

Susan Senator – Author, English professor, disability advocate
Susan is best known as Nat’s Mom. Susan has written two autism parenting books, a third will be published April 2016. Her work has also been featured in the New York Times Magazine, the Boston Globe, and the Washington Post and on the Today Show, NPR, and CNN. She writes a blog & posts on Facebook about autism, parenting, & living happily.

Jess Wilson – Writer, blogger, advocate
Jess shares her family’s journey raising two beautiful daughters, one of them autistic, to 250,000 loyal followers in her online communities — on her “Diary of a Mom” blog and Facebook page where she writes with humor, compassion, and mutual respect, building bridges and mutual understanding about autism.

We will enjoy readings by these three local authors
and advocates who eloquently share
their experiences and perspectives on autism.
Sunday, November 8th, 2015
3:30-5:30 pm
Newton, MA

Please register at Massachusetts Advocates for Children – Friends of the Autism Center, November 3rd.

Suggested Optional Donation: $25 * $50 * $100 * $250

Capacity limited.

Friday, October 23, 2015

Inclusion, Shminclusion

All my maternal life (almost 26 years as a mom!) I have been aware of the concept of inclusion. My babies have been the catalyst for my fervor on the subject. Nothing like children to make you see life as it truly is, red in tooth and claw. When Tennyson wrote this, did he have kids? Because in many ways that is me, indeed, as a mom: a hawk, well-bloodied from the fight. (Proud, prominent beak, muscular, and feathers easily ruffled.)

Inclusion is not just an issue for Nat, whose autism has put that topic front and center for me. I have been roused to the fight for inclusion of my other two boys as well, who are neurotypical — though not at all typical. With Max, I despaired of his reluctance to join in with sports, particularly in the tender middle school years when everybody had to be running somewhere with a ball in the air. Not my Max. He was the tall guy walking down the center of the soccer field, while his teammates ran and jumped and butted their heads together. I have to admit that I hated the closed club of boys in team sports because of Max and Ben, not Nat. In middle school Max labelled himself a Floater, neither belonging to the sports lunch table, the drama boys table, or the geek boys table. He would smile his dreamy smile and float along, head and shoulders above it all. He was happiest with a Lego movie camera in his hand.

Oh how I worried. Should I force him to try harder to be a bit like the rest of them? I would wonder. Should I interfere and set up playdates for him? But no, he would just smile and he wouldn’t really have to even say much, his refusal was as hard as steel. By the time he was in 8th grade, he had figured it out, he was simply Max, and just about everyone loved him. He ultimately went to film school. He is now the coolest person in Brooklyn.

So then there was Ben. Ben categorically refused to play in any reindeer games. He didn’t smile about it, either. He always had full critiques on why that life was not for him. Well — not as a 3 year old when he would just sit in my lap like a hard brown walnut, and watch those kids in Boys’ Dance class or soccer. It was not gonna happen. And it did not.

Again, I worried. Was he sad? Angry? What was it? Why was he alone a lot? The answer was staring me in the face, all around me — Ben’s beautiful, brilliant, heartbreaking art. The energy to create like that was being channeled right through him, onto paper, and later, digital tablet. Now, at the high school, he’s not only a artsy kid, he is art himself. He creates himself, works on himself, daily. He wears layers of forest-colored clothes, Celtic-like rings, copper, silver. Plaid high tops. Listens to music that sounds like water droplets on mushrooms.

Nat was not included much with his non-autistic peers, ever. No art classes until last year (at 25). Solitary, not group music lessons. Special Olympics rather than school sports. Special school rather than neighborhood school.

But so what? As his brothers have shown me, being included might be overrated. You hang with whomever walks along with you. If your peeps are all autistic and special needs, why doesn’t that count? Nat’s always hung out with autistic guys. Or other special needs kids. Does he care? Isn’t he smiling at their birthday parties?

Why does it have to be “typical” peers — for any of them? Haven’t they all shown me, each one, over and over again, that it’s okay to be different? It’s okay to be alone. It’s okay to be an odd duck, a black sheep, lone wolf.

If so, however, it’s probably best to have a mother who’s a hawk. But whatever animal spirit inhabits you, I’m sure it works somehow with your little critters.

 

Tuesday, October 13, 2015

That thing with feathers

Recently a friend added me to a Facebook group and at first I sighed and thought, “Not another one.” This morning, though, I needed something to read and I was too lazy to look at the odd little book I’m reading. I sunk my lips into the foamy first coffee of the day and started to read. And there it was, mothers posting about sending their autistic child to a residential placement for the first time. I saw questions about teens not yet toilet-trained — one of those worries that stings (and probably shocks some of you), but that you can still articulate. Other parents talked about their lack of income, having given up jobs to take care of their child at home — for as long as they possibly could keep them. This particular concern was smeared with stinking shitty guilt because she felt a little selfish to be worrying about that, too.

But this wasn’t even the bottom yet. How much was left unsaid — that’s the part that cuts. As deep as the grave. It is still with me, the chill of having to let go; to allow your child fade into the fog. He becomes distant; he has to. And so many will say to you, “That’s the way it’s supposed to be.”

Yes, but no. Of course, children grow and leave for new experiences, and they learn how to fend for themselves. But do ours? Do our severely autistic children — including our verbal but severely autistic children — ever learn to really fly straight and safe?  Perhaps they hop on the ground, or are lifted sometimes by a particularly good, skilled teacher or caregiver. Then they fly, alight on a branch, and you think, “Ah. At last. Thank God.”

Yes, but no. For the Mother Bird hovers nearby, maintaining her nest. Eyeing the sky, listening to the air. Never going too far away. For she’s learned that they fall off the branch, or like my Nat, they may stay there and tweet so softly, and look at all the other birds getting their own worms, chasing, mating. And still he stays.

You want to puke it hurts so bad sometimes, knowing you could not do this last thing for him. This perfect, sweet being that grew from a tiny lima bean into a fat healthy baby. He could have had the world. If only you knew how to get it for him. Some will say, “No one gets the world.” Or “You did your best.”

Yes, but no. Some do get the world. You did do your best. But you could not do it alone, and the others who try to help don’t even do it as well as you. You can’t blame yourself, you can’t blame them, you can’t blame autism, you can’t shake your fist at the gods. You just have to live with it and keep your bird’s eye sharply focused for as long as you can, on his potential, and you keep hoping, that thing with feathers.

 

 

Tuesday, October 6, 2015

My Top 10 Nat Worries

10. Does he feel his life is terribly limited by his disabilities, and if so, has he made peace with that?

9. Does he feel patronized, talked down to, by me, and everyone else?

8. Does he get enough fruit/veg?

7. Does he sit around too much/is he bored a lot but unable to get out of it?

6. Has the medication actually helped how he feels or does it only look that way to me?

5. Does he like his job?

4. Does he miss his brothers, but not understand why they are growing up and have left/are leaving the house?

3. Does he wish he could talk to people, does he wish people (especially his brothers) would really try to talk to him?

2. Does he like living somewhere else? Does he wish for home?

1. Does he have bad dreams and doesn’t know how to feel okay from them?

BIGGEST FEAR OF ALL HAS NO NUMBER: Has he ever been abused/hurt/intimidated/bullied?

Answer: not only can I not die ever, I also should not be so ill-equipped to parent him.

Another thought: it is amazing, wonderful, and right that the institutions are closed/closing. BUT it is horrible that we still do not have really good solutions for inclusion.

Also, sorry to be negative.

Also, too bad, I’m human and it’s my blog, I’ll cry if I want to.

 

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