Susan's Blog

Wednesday, September 30, 2009

My FaNATasy

When our kids have disabilities, on the one hand we believe that fantasy, dreams, and plans are no longer possible. Special classrooms bump out exclusive preschools, the would-be football hero, even the class clown, is not to be. Prestigious colleges shrink away, perfect marriage — busted before it was even foreseen in Heaven.

Are you depressed yet?

The thing is, we should never have those pictures in our heads in the first place. Who says that this is what we get? Whoever made that brochure sending us to Italy (you know, the trip where you end up, by accident, in Holland), lied. It was all a marketing ploy, to get you to buy fancy Italian strollers, to match your fancy imported car, to go with your Ivy League life. Your baby is supposed to match your carefully groomed self, your therapy-smoothed insides, your product-smooth hair. Our babies, on the contrary, are real life. Products of complicated blood and tissue and sophisticated neural circuitries — it’s a wonder it comes out “right” any time!

It truly is a wonder, that we have life at all. We forget, living in our beautiful homes, that nature is red in tooth and claw. Primal. Raw. Remember your child’s birth? Enough said.

I’m not usually this cynical. So, maybe my fantasies have to become fanatasies, in other words, dreams shaped by what Nat is like. Okay, so no grandchildren from Nat. Yes, tragic. The world could use some extremely cute little blond Nat babies (oh, no, tearing up) but — not every adult reproduces, okay? And as for Ivy League: well, that’s not all it’s cracked up to be, either. Besides, how many super-educated kids come back home to live with their parents these days? You shouldn’t know from it.

My latest fanatasy looks more and more like it could fall into place, knock wood. (Take it from me, the descendant of shtetl-dwellers who ran for their lives during one pogrom or another. We autism parents always should keep a little wood handy, for when things are going well.) Today I met with a couple who founded an organization 20 years ago, that helps disabled adults put together housing. These are small group homes with a couple of live-in staff (not 24/7, but enough).

The organization’s staff and resident turnover rate is low. Live-ins are often promoted to house managers. The set up is similar to Nat’s current House, and also the way his school does their adult housing. I am becoming fairly conversant in adult service lingo, which makes this process all the better.

This is the third set-up I have discovered, right in my area. Group homes in urban locations (my town is urban-ish, with access to public transportation and very walkable, interesting streets) so that the residents can get to jobs, day programs, volunteer situations, all without relying on paid transportation.

My fanatasy is that Nat would be able to get a job similar to one of the 5 (five!) jobs he now has. So far he has learned to do cafeteria-serving; janitorial stuff; making boxes; delivering messages; and filling orders for classrooms, as well as his volunteer work with Meals on Wheels. My Natty is a Nat-of-all-trades, at least of trades that many 19-year-olds find for themselves, disabled or non.

The best part is, Nat loves to work. Nat does not even know that his work is “beneath” him. Therefore, it is not. And as for housing, I have been dreaming, as of today, that some of his social group friends could also live in one of these homes along with him! Imagine how happy he would be, to get to live with his buds, just like many young men who get a house together somewhere after college.

What does an adult need to be happy, to live a life and get along in the world? A home, friends, work or other productive activities. There is no need to see Nat’s future as a nightmare, because all that other stuff is just a dream for all of us anyway.

Wednesday, September 23, 2009

Love From A Distance

Sunday night was a bit of a trial for me. Nat did not make his nightly call, so I called the House instead. The staff person was kind of quiet and not only difficult to hear, but he just didn’t have a lot to say about Nat’s day. There was nothing outwardly wrong with what he did or did not tell me. I heard about Nat’s mood that afternoon, and where they went for fun (they went apple-picking). But I did not feel satisfied. The thing is, I don’t even know what to ask, I only know I’ve heard it when I hear it. I mean, when a House staff person gives me a certain feeling about Nat, based on a few things they tell me about his day — that’s when I know I have heard enough.

I asked to speak to Nat. He was the worst, most spacey I have ever heard him: completely out of it, unable to answer most of my questions, dragging out the word “ye-es,” even when it didn’t make sense to answer “yes.” I got that downward tugging in my face, and my mind raced quickly but came up blank. “Give the phone back to —, Nat” I said, again and again, wanting to speak once more to the House guy. Nat could not do it. Or would not? He just kept saying nothing, or “ye-es.” It was horrible. Finally I said, “Nat, I’m going to hang up. Goodbye, Darling. Nat, hang up!” He would not even hang up. It was a terrible feeling, hanging up anyway.

I then called the House back. I asked them to check on him, to tell me how he seemed. But the staff person thought Nat was fine. Maybe tired. I got off the phone. I was not satisfied. I was starting to get angry, which is where my Nat-worry usually goes.

I called again. I asked them to check on him again and call me back. Then, apparently, the nurse came in just then to do a weekly check on everyone. I asked for her to check on him. Then I had Ned call them back. Call number four from us. The nurse told Ned she thought Nat was fine, just a little tired from the apple-picking.

I wrote a fiery email to the House Manager, which I did not send. Instead, I emailed him briefly, merely asking him to call me when he had the chance. Very restrained for me. I didn’t talk to him until today, which was a good thing, because by now I was much calmer and could separate out what it was I needed from them. The Manager was very good at figuring out what needed to be done about Sunday night (from the staff perspective) and also reassured me about a number of things. Also Nat was himself again by Monday (although he’d had one of his rare outbursts that morning, about a pair of shorts with a broken button, under the bed. the House Manager checked under his bed, but there was nothing. But when I heard about the outburst, I went upstairs to check under his bed here, and sure enough there were a pair of shorts under there. No broken button, but I’ll figure out what was wrong with them.).

I am learning that my instincts are pretty good but my impulses get me in trouble. I feel that Nat is well-cared-for there at the House, my gut and my brain tell me so, but sometimes I trip over my wildfire temper. Anyway, Nat is worth the fall.

Saturday, September 19, 2009

Things That Go

There you are, looking so happy to have found the Richard Scarry book Cars and Trucks and Things That Go from so long ago. That book was one you had memorized, and recited again and again while you walked in circles at Aunt Rhoda’s house, on that successful Thanksgiving 18 years ago. I would get the diagnosis just two months later, but the darling circular repetition did have an edge to it, I do remember that. So much fear slicing, but subtly hurting, like a million tiny paper cuts, into my consciousness back then. So much fear, knowing that all was really not.

On our walk today I felt grateful for that tiny gesture, your finger pushing the “Walk” button without any prompting from me. Anyone else would have missed that pink fingertip moving so wisely, but I am ever vigilant, my attention to you drawn like a sword against the world. My heart open, soft as a pillow, ready to rejoice at the smallest advance, the step forward. This is something I learned probably in Aunt Rhoda’s noisy TV room. Maybe even much earlier than that.

So, the finger on the button. But yesterday, even with that flashing “walk” sign telling you to walk, that blue Prius had to make her right turn, she just took her opportunity, without seeing your bright green tee shirt, or that deceptive white lit up man who beckoned with evil banality, mechanical indifference: Sure, you can walk. Go ahead! I take no responsibility for you, I can only do so much.

Me too.

Monday, September 14, 2009

Sorting it out

Yesterday we went to see “9,” a new CGI sci-fi movie produced by Tim Burton, about evil robot-ruled earth and the nine small sack people who remain. The movie was, according to Ben, “1/4 Myst, 1/2 Wall-E, and 1/4 Little Big Planet.” There were also strains of The Matrix. Interesting flick, but not emotionally compelling, except at the end, where the question of missing loved ones came up.

After dinner, although we started out giving our critiques of the movie (with Ben saying, “Everytime we see a movie, we always end up criticizing it for three hours!) we found ourselves in a lively conversation about the houses of Harry Potter’s school Hogwarts. Max began it, by stating that he would have been in Hufflepuff. Hufflepuff? I asked. Not Gryffendor? I looked at Max, with his golden mane, his physical beauty, and his inner strength, and I felt disappointed that he would pick Hufflepuff rather than what I thought of as the “best” house. Max explained that Hufflepuff was all about being loyal and true, whereas to him those in Gryffendor were headstrong. Given this description, I could agree with Max, and I realized that, yes, even though I always see his potential and power, his rock-star looks, Max has never been interested in any of that. Max’s true self has always been about quietly knowing what was what, and not leaping up to brand the moment with his views.

Ben then said that he’d kind of like to be Slytherin. I felt a moment’s concern, but then Max pointed out that Slytherin was not actually evil, but ambitious and political. I could feel that Ben could have been in Slytherin, but maybe more Ravenclaw, because of their intense cerebral abilities and their focus.

I said that Ned was Gryffendor, because he is my prince, but when I think about it now, he might be Hufflepuff like Max: steadfast.

I said that I was fascinated with Slytherin, and would love to be named Bellatrix LaStrange; I also think alot about who does what to whom and why, but I don’t think that makes me a Slytherin. Maybe I’m a Gryffendor, because I like my own ideas best and I like to put them into action. Maybe Ravenclaw, because most of the time I dream things up and then go back to my laptop.

The conversation was coming to an end, when I brought up Nat. There was silence, small but excruciatingly awkward, yet I persisted. Nat was not here with us, but he still has a personality and he deserved to wear the Sorting Hat like the rest of us. Ben muttered, “Hufflepuff,” but without conviction.

“Gryffendor,” I said. “Think about it. He’s charismatic; he always attracts people to him, people who believe in him and adore him. He gets into trouble with his passions and single-mindedness. More silence. I said, “And, you know, sometimes I get a glimpse of who Nat could have been if he were not autistic.” Max and Ben looked at me, processing this. I did not elaborate; nor did I give up. I am determined not to let Nat slip into the background, the family netherworld, just because he is not with us all the time, just because he can’t converse with us when he is.

Then Max said slowly, “Yeah, I can see Nat as a Gryffendor.” I felt ridiculously elated hearing Max talk about Nat, think about who he was. And then Ben quietly agreed. The conversation gently moved on, but something good and powerful remained.

Saturday, September 12, 2009

To Infinity — and Beyonce

Wow. I think Nat may have found an alternative to Disney videos. I heard him saying to himself, “To the left, to the left,” and I said, “Nat! I know what you’re singing…” A quick foray into YouTube and my 19-year-old son was mesmerized. Well, well, well. They do grow up.

Wednesday, September 9, 2009

Who Cares?

If I were the king of the world, I tell you what I’d do: I would pay caregivers/service providers a lot more money. Any kind of caregivers. Babysitters. Daycare providers. Teachers. Aides. Nurses. They should earn in the same ranges as CEOs, rock stars, and ballplayers. They should earn more than CEOs, rock stars and ballplayers. It just doesn’t make sense, that those who need care, are given the least of it. In schools, paraprofessionals work with the most complicated kids while someone highly qualified consults or oversees. In group homes for disabled people, the direct caregivers are those who really need a job and may not necessarily want to work in that profession. They may be underpaid, undertrained, and unmotivated: a perfect storm of Un-care, or care-lessness. It’s like the Woody Allen movie, Sleeper, where the scientist says, “It’s precisely the opposite of what we now know to be true;” it is the exact opposite of what it should be. Ballplayers. Ballplayers! And rock stars! “Any jerk with a guitar can be a star these days,” is what my mom used to say.

It’s because it’s not glamorous to care for others. Unless you have a flying umbrella that talks and you can jump into your chalk drawings on the sidewalk, you had better be ready to be shat upon. Sometimes literally.

How do I make disability glamorous? How can I make people notice and not look away or deride? How can I make people care?

Again, what is at the bottom of this is that people are attention-limited and they cannot devote energy to too many causes. It’s true: while I spend a LOT of time reading and thinking and writing about disability/autism there are many other worthy causes I don’t even glance at int he papers. I did not listen to Obama’s speech on education. I barely know about the floggings in the Sudan. And I call myself a caring person.

I had coffee with a director of a large charitable organization today, which contributes a lot to disability quality of life projects, and the news was not good. The money is just not there like it used to be. So the care will be even more spare. How is that okay? And later on, I had a meeting with our Department of Disability Services liaison, and again I heard that this was the worst year for funding in the 18 years that she has been working for the state of Massachusetts.

I drive through poorer sections of Boston, or walk around New York, and I see the disabled and the homeless, bent, staggering, ragged, in wheelchairs on corners with boxes and hand-lettered signs that ask for help. I pretty much always help them. I roll down my window and slip them a dollar or a five. I have been blessed by some of them for this, and that embarrasses me. I do this because I figure that’s where money really ought to go. I think, like Melanie Wilkes, who tirelessly tends to the ravaged soldiers that make their way past Tara: “One of them could be Natty. They could all be Natty.” There but for the grace of God. And funding.

Monday, September 7, 2009

Family Tides

We just got back from a mini-vacation on the Cape; it was our goodbye to summer. And what a goodbye it was. Aside from bathing in the ocean and the sharp golden light of approaching autumn, we were also immersed in one another. My family has swollen to six at times, because Nat is with us on weekends and Hannah, Max’s girlfriend, is here perhaps even more often. I don’t think people should be careful of what they wish for: I had wanted a fourth child for the longest time, maybe a girl, and now — !

So we spent three days playing all together. I took 15-mile bike rides to the same old places — bay, marsh, pond, woods, ocean, dunes — feeling as excited about their familiarity as I had about Paris’ unfamiliarity the month before. One morning I took Nat on a bike ride that was just a 1 1/2 mile loop, short because he seems to get anxious when we go for too long on the bike. His self-talk changes when he gets anxious; he inserts a few hums that sound more neurotypical than his usual Nat words, but you can feel the anxiety in their breathiness. So I don’t push him too far, although he really rides well and I think he could — and will — do more at some point.

At my request, Nat’s teacher had made a small laminated booklet of “Beach rules” for Nat, reminding him of things like others’ personal space, and how to walk quietly around the beach. The last year has felt like a boom time for Nat, a time to learn, to try new things. So I did try periodically to remind him of quieter beach talk and I also reined him in when he got too close to others’ blankets. Ben took his cues from me and tried just as hard to pull Nat back, perhaps with a bit more zeal than I would have liked. A lot of Ben’s former anger resurfaced on this vacation, but it was mostly appropriate and controlled. He would say to me, with glowing eyes, things like how embarrassing it is, how Nat just doesn’t learn, how we should tell him this or that. I listened a lot, and found myself agreeing with him at times: “Yeah, I know! I wish he would learn that. I think he will some day.” Ben would disagree, and then I would point out the things that Nat has learned in just the last year. I would also tell him, “Ben, you know, autism is really hard. Sometimes it is horrible. I know that. I know that you have a lot more to deal with than other kids your age, and I am sorry for that.” For this is as true as my love and respect for Nat. Both things exist in one family, in one heart.

I felt my breathing become lighter as I said this to Ben. I found that validating him was not only something he needed but something I needed as well. A few days later Ben even joked about how he feels about Nat. When he couldn’t find his watch he said, “Someone must have taken it.” I asked him if he meant Nat. He said, grinning, “Nah, but it would be awesome to blame him and have him really have done it!”

Ben seems especially bothered by Nat’s issues with privacy, that is, masturbation. Ben hates the whole pillow thing and talks about it with disgust. Again, I can’t blame him. I have to balance Nat’s needs and dignity with Ben’s — and society’s — boundaries. And with safety. I am the eternal juggler. But I’m a mom; it’s my job. So just the other day, when it was rather clear what Nat was thinking of doing for the next few minutes, just before I reminded him to do that in his room with the door closed, I also handed him a piece of paper towel and said, “Nat, use this, not a pillow.” I explained it a little bit, very matter-of-factly. Ned shrugged, not sure that this would have any affect on Nat. And I felt bad about Nat’s business being discussed, and that this was done in front of Ben — a pre-teen with a very large sense of shame — but then again, our family is unusual, I just got finished telling Ben that. What else am I supposed to do, if I want to teach Nat sanitary and safe behavior, in the moment, when it will make sense to him? What are my choices here? Bad, either way. But the lesser of two evils is for me to try very very hard to correct Nat’s bad habit of pillow-use. I have to think of Nat’s safety out in the world, do you understand???

I think it is going to improve one of these days because Nat, too, seems very conscious of privacy. Anytime his hands start moving down to his lap he looks to see if I’m watching. His eyes widen if I am. Then I say, firmly but quietly, “Nat, do that in your room with the door closed.” I do this every time. And either he stops or he goes to his room. He is very aware. I feel like it is only a matter of time before it all clicks and becomes a new habit, just like when he was five and always, always pooped in his pants standing by the window, even though he knew how to use the toilet! I even tried moving the potty to that window. Nothing worked until we went to Disneyworld and I showed him the toilet and said, “This is where you will poop, and when you do you will get a Cadbury creme egg,” and I showed him the egg. And he went right away and pooped in that toilet.

It is quite the conundrum, trying to be a champion for Nat’s rights, and Ben’s rights, while at the same time, having to deal with these problems that are usually so private. I am just doing my best, though it feels like I’m in a cave without a flashlight at times.

Happily, there are organizations that exist solely to promote understanding and awareness of autistics’ rights — and information that can help. Autism National Committee is one of them. On their website they describe themselves as “The only autism advocacy organization dedicated to “Social Justice for All Citizens with Autism” through a shared vision and a commitment to positive approaches. Our organization was founded in 1990 to protect and advance the human rights and civil rights of all persons with autism, Pervasive Developmental Disorder, and related differences of communication and behavior.” Their conference is September 25th-26th in Nashua, New Hampshire. I feel very hopeful that truly humane and helpful solutions for families like mine are on the way.

In the meantime, I am treading water, holding my sons up while the waves crash around our heads and the rocks are tossed about our feet, trying to teach them how to hold themselves up in the surf, and also trying to have a little fun myself.

Wednesday, September 2, 2009

Raising the Bar (Mitzvah) For Autistic Kids

A long time ago, we gave Nat a bar mitzvah. This was before special organizations like Gateways, or other special needs religious school curricula were as common as they are now. I got together with a few other parents back when we belonged to a synagogue and we formed a Special Needs Task Force, to get the temple community to understand that they were inadvertently leaving out an important minority of the congregation. They needed to make aides available. One of Nat’s teachers became an aide in the Sunday School class, and Nat was fully included that year.

It is difficult to put your finger on what our kids get out of Sunday School or religion in general; that is true of most kids. These days I don’t get much out of mine. I identify with Judaism as a faith and I definitely believe in God and good; but I don’t want to be part of a congregation. I really don’t like the way I feel in religious services. Now and then I’ll go with my mom, and every once in a while I’ll feel something special and moving, especially when speaking or singing in Hebrew. The ancient Hebrew prayers feel real to me.

I think Nat feels the same way, with one big difference: he loves being in temple, much the way he loves being in any kind of group. I often don’t feel good in groups. It’s funny, that stereotype of autistic people disliking crowds, noise, others’ company: you just can’t lump together “autistics” any more than you can lump together “Jews” or “Republicans,” for example. Nat loves groups, he loves noise, he loves parties.

At temple, however, he also tries to sing along and he definitely knows many of the shorter Hebrew prayers. I never did try to teach him Hebrew; that seemed too arduous. But he picks up on things, especially music, so he really enjoyed Sunday School.

The problem was, the year he was to be bar mitzvah’ed, he was left out of the choosing of the dates. The choosing of the dates of bar mitzvahs is important; your date dictates what your Torah portion will be, and what the theme of your Haftorah will be. But every Saturday was chosen already. They forgot Nat. All that was left for Nat was a mid-week bar mitzvah.

It broke my heart. But, like most things that piss me off, it spurred me to action. I planned a bar mitzvah without a temple, without a congregation, and it turned out beautiful. Nat was just perfect — give or take some giggles.

Soon after the bar mitzvah, my book came out, and I gave a talk somewhere, and met Cathy Boyle. Cathy had just developed a Catholic Sunday School curriculum for autistic people. She and I were on the same page (different Bible). Today I got word that she has a second part of her curriculum, and that it is available here.

No child should have to be without a religious background if they have that side to them, and if it is important to the family. People like Cathy (and the folks at Gateways) make it that much easier for families to go about their business being just families. L’hitrot.