Susan Senator

Here is a poem sent by a friend of mine, which he wrote during a long flight somewhere. Tim does not have a special needs kid of his own but you could say that he actually has millions of them. I’m publishing it here, with his permission, because I think he really gets it.

Born to No

Mystery rush in
I want to catch some
As I sit in the bleacher near a rough sod track
And the lanes
Divide the field into narrow lines telling each runner, “Stay in.”

I sit
Not alone but not a part of the mothers and fathers and
Bored brothers

and sisters waiting for their turn To cheer sister special

There she is now,
Making her way to the starting line
12 years old and not made for glory
Born into tears
“No Ma’am. The Baby is not all right.”

Born into struggle
No walking at 1
No talking at 2
No playdate at 3
No school at 4

“No Ma’am. Not here”
Born to no.

And when she runs, she runs fast and away

So now her race; her lines ahead, her place to fit in
Between 100
meters of start and finish
In her moment to run.

The gun fires and she runs
Sister, daughter, child of mystery, running, head high, eyes wide,
arms swinging, wild.
“Run sister. O Good Lord. O Good Lord.
My child, my precious child of my body. Run baby run.”

And finish-I know not how or what number-she did
And she raised her
arms, her limbs like crooked trees arching toward their sun
Spreadingtriumph with every sweatdrop

She’s looking at me. Smiling.
And I am surrounded by her posse of yes.

She is our mystery of yes.
Nothing less.

And there is nothing more.

–Tim Shriver

One of the things that happened this holiday is that Natty got laryngitis. It is kind of funny, I have to say. He does his silly whispers, as Ned calls it. But Ned is also afraid that Nat will just continue to whisper, even after he’s better, because maybe it just feels better to him. He seems to love doing it. I also noticed that his flapping has become more frantic, more copter-like, in inverse proportion to the sound of his voice.

Even with his slight cold, Nat seemed to enjoy Thanksgiving. Grandma Shelly kept loading up his plate with all of the turkey bone parts, and he kept eating and eating. Nat’s ability to eat and not gain an ounce is legendary in my family. We have never heard of such a thing, so watching Nat consume food is kind of a miracle to behold. We can’t stop ourselves from offering him things to eat; we have the Eastern European Type Jewish metabolism, (known as E.E.T. Jewish) but Nat must take after Ned’s father’s Load Up on Carbs and all Kinds of Yummies metabolism (L.U.C.K.Y)

Just when I was about to say, “Mom, stop, he’ll just keep eating,” he got up from the table with his plate, set it empty on the counter, and left the room. We kept eating. I had made two pies: blueberry-apple-cranberry with cornmeal crust; and pumpkin with cornmeal crust. Cornmeal crust is way better than regular. Regular is like salty cardboard and doesn’t add anything to the luscious filling. It is often something to tolerate or to eat around. But cornmeal crust tastes a bit like mild crunchy shortbread and is a wonderful foil to the sweetness of the filling.

I am so fat right now I can’t stand it. The only thing that will make me feel better is to raid the boys’ Halloween stash. This is not a clever blog post ending, it is just the pathetic truth. I’m eating drinking and being sad because tomorrow, we diet. But not Nat, that L.U.C.K.Y. so-and-so. Ned doesn’t even allow me to complain about my puffiness because he’s sick of it, so I have to suffer in silence and hope I don’t have blogged arteries.

I don’t know what to write about, but I got that feeling so I know I’ll just start typing and there it will be. I start by setting out my life cards, fanned out in front of me, and I look at each of them, scanning for the sticking point. There are cards representing all areas: family, work, friends, tsuris. I used to read Tarot cards for fun. If this were a Tarot reading, probably the last card would be the Seven of Cups.

Let me lay them out one-by-one and see what I’ve got.

Ah, the Ben card: up last night at 5 totally congested. I showed him how you should blow your nose (really hard, one nostril at a time) to clear out, and he said, “But I’m afraid it will make my nose bleed,” and before I could respond, I looked down and saw my blood-filled tissue. Noseblower, heal thyself. Ben slept like a rock after the humidifier, sympathy, and Benadryl kicked in.
The Max card: another A in another subject. Peanut butter cookies he made with Hannah yesterday. We don’t yet know if she’s joining us for Thanksgiving. I drove him to school because of the rain, talked about what phone he is not going to get for Chanukah.
Nat: I did not talk to him last night, because I was in the middle of some excellent dancing. Ned did. Nat said to him, “You hit Terese and Mary.” Which was true. There had been two outbursts yesterday over spilled water. Too bad it wasn’t milk. (Will worry about the rearing of the ugly head of aggression later on today.)
Marital card: Musing on the quaintness of the word “Thanksgiving.” Why, it’s a gerund, for Pete’s sake! How many holidays are still named after the present tense of a verb? (Hopefully interest levels in marital card will improve a bit more by this evening.) Maybe it is thus so that we don’t take it for granted, and start calling it “Thanksgiven.”
Extended family: Laura is fine, whew, Thank God. You shouldn’t know from it. Sarai is trying to get used to this whole New Baby Thing, and hopefully she’ll make it to Mom’s Thanksgiving in lovely Connecticut. Dad says if Hannah comes, she has to pick up twigs (all children, grandchildren, boyfriends and girlfriends have always had to pickup twigs for Dad. Now that’s a Given.)
Physical card: Cholesterol test and flu shot happened today (so now get off my back MOM). Afterwards, I have never been so crabby or so eager for coffee. Last night, I ate tons of banana cake last night because I was in a baking and loving mood and we had rotten bananas and Ned asked so nicely so — three mixing bowls later, I was on the couch, filled with batter and regret. Somehow woke up not fat, but just give it time.
Work card: Baby Bellies later today, going over our new dance routine as many times as we can before they say they want snack or are bored or tired. I wrote the routine on the board only to realize that half of them can’t even read yet. What do I do, draw the moves?? That will be good for a laugh.

Still in love with my new job, today’s the last real class before the final. Today they are turning in their Research Essays, and I’m psyched. They took the assignment so seriously, it was just a joy to behold. Questions on how to use citations, the MLA style, etc., nearly drove me crazy, but, I love watching them work and think. I think I’ll have them write essays as their reward.
I may actually drive downtown because of the rain. There is no good way to get to work when the weather is this bad. Cabs cost $15 each way, and the T, well, … it’s a lot of walking in the wind and rain vortex of downtown Boston. So I’ll be driving, driving! in Beacon Hill!
Tsuris card: Why should I tell you?
The Tarot reading
is all done
For me it was
a lot of fun
It don’t mean much
just gives a glimpse
take it as such
or you will wince.
Okay, what else?
There’s always more,
and that is what
I’m Thankful for.

The 5 K Gobbler race for Best Buddies was a lot of fun, despite weather in the mid-20’s. I had outfitted Nat head to toe, with state-of-the-art running gear from Marathon Sports, but still he ended up wearing his down jacket the whole time!

When we got to the school where the race was to start, Nat bounced out of the car, in Special O mode, and it was Joyful Pre-Registration Stompies all around the gym until the race started. His smile never quit. His entire House showed up to cheer him on, with signs and treats. His team finished all together, a decent time, but Jack (the Residential Director with Nat in the pic) has already upped the ante and is now aiming for them to have more competitive times, and so they will be doing more races this winter! Note Nat’s smile and blurry left hand — that should tell you all you need to know!

A loved one recently had a baby and this made me remember the particular issue of newborn-feeding. Before Nat was born, I was so determined to breastfeed because of all that I had heard about it, that I went to La Leche League pregnant. I knew everything about it, all the benefits, the positions for holding the nursing infant, the convenience, the transmission of your immunities to the baby, the weaning, etc. I heard, for the first time, the anti-vaccine hysteria, the fears that moms had of putting “those germs” into “these pure, perfect babies.” Even back then I did not agree with that sentiment, and this was way before anyone was connecting shots with autism (other than Andrew Wakefield).

I did not agree with the anti-vaccination mentality, but I did agree that Breast was Best. That’s why it was such a calamity when, a week after Nat was born, I came to the conclusion that I was not going to breastfeed. After all I had learned, all that I had planned, it seemed that Tiny Nat was never full enough and was often crying. When he wasn’t crying, I was, because I was in horrible pain. I did not see how my mams were going to “toughen up” or get used to this; I did not see any progress in terms of Nat’s appetite. I did not know what I was doing wrong, and I didn’t feel like I could call any of those La Leche League Ladies I had lounged with for long learning lessons about lait, pre-partum. My sister, whom of course you all know I adore, had not had any children. Neither had any of my friends, most of whom were not even married yet! My mom had bottle-fed. There was no one to ask. Lactation specialists probably existed, but were not readily available. I had a book or two, and I had the nurses at Beth Israel where I had given birth, but every single one of them had given me different advice.

There was Nat splayed across my chest, screaming and screaming. A tiny little quivering pink wormy thing that I loved so much I could barely think, so I was always terrified of breaking him. Anyway, I remember the moment. “I can’t do this, I can’t do this,” I sobbed to Ned.

“Sue, it’s okay,” he said. “What does it matter?” Ned felt that it truly did not matter which way a baby ate; he just could not stand to see me so torn up, literally and metaphorically. He then even made me laugh, I remember that. And I think that was the deciding moment. We were in this together, and we decided together.

We gave Nat his first formula, the green and white label Similac dry mix, and Nat drank and drank. I grieved for a very long time, not being able to do what I had planned for so carefully. I was ashamed to tell all of my La Leche companions of the traitorous decision I had made. Later on in life I would still feel that shame, that somehow I had failed at something right away as a mother, and that I had not done what was best. If any woman can breastfeed, why couldn’t I? How did they rise above the pain and the screaming?

When Max was born, the exact same thing happened. I could not make it work. And he was a much bigger baby than Nat, and so greedy and needy in terms of food. Max drank four ounces of formula the very first time I offered it to him, and was the most content, fat little baby I had ever seen. (Oh. My. God. Stop remembering that…)

I actually did nurse Ben successfully because by then I had locked in place all the right supports and I figured out a way to get through some of the physical pain. But I never ever like it when people bully others into believing that you really really should breastfeed, and that it kind of means something if you don’t. Yes, of course there are health benefits, and it is lovely to connect in that primal way with your infant; but it ain’t everything. It’s one good thing out of so many. The sooner a mom learns not to beat herself up, the better.

Soon after their first few weeks with the bottle, Nat and Max slept the night. The night. What joy. So I could sleep, Ned could sleep, and then we could be our best to parent them the rest of the time. What could be more important than that?

No matter how busy and fulfilled I feel day-by-day, I still have pockets of time that trouble me. I fill those pockets with obsessive thoughts, which first please and then plague me. Although I no longer struggle with full-blown OCD, I still have difficulty staying in the present and then moving gently forward. I still get stuck on things that happened, which then keep my brain tripping over the details. Sometimes I think I’m looking to relive what happened, sometimes I think I’m looking to redress what happened. (You could argue that writing this in my blog further exacerbates whatever occurrence I’m hung up on, but I find it helps me make sense of it and thus purge it. I don’t know why it has to be public, however. Everyone in my life asks me that: how can you put yourself out there like that? They worry about me. They are glad they are not like me. Maybe they admire, too. Whatever. Writing makes me feel stronger. Writing is self-affirmation for me; sitting and thinking is self-destruction. I don’t know why that is. Anyway, blogging and sending myself emails when the blogging subject is too excruciating is a way I can connect what goes on in my head to the world outside; I think that’s why I do it. You’d think I would examine that, but I don’t.) One thing I have found is that in blogging, although I certainly get my share of Trolls who say mean things to me, there are so many others who feel what I feel and let me know, and then I am no longer alone in my universe of thought.

When my OCD was acute and getting in the way of my life — and this was, unfortunately, when Nat and Max were babies — I had a wonderful therapist who was able to probe the deeper reasons for the OCD, and also to help address my behavioral expression of it. Aside from being on a course of Prozac for a while, which of course helped keep my brain “slippery,” as I thought of it, R’s work with me was nothing short of miraculous. I think that is because she understood that in addition to the imprisonment of OCD itself is the debilitating shame that beats you down.

The best thing she ever said to me was, “I look forward to a time when you will simply say to yourself, ‘I need to do this checking,’ and embrace it as a part of you.” By saying this, she removed the shame and gave me a way to shrug and check or whatever I needed to do. In lifting this burden from me, she actually made me feel less compelled to behave that way! She made it less of a Big Deal. She was the first person ever in my life to say: “We all have our things like that. You are not a monster.” That attitude was eminently healing, to a point where I now only have moments of being stuck in a negative thought cycle.

Of course I wonder how to translate this kind of liberating acceptance to my children. I never want them to feel ashamed of who they are, of things they cannot help. I use shame on them when they are being thoughtless to others, rude to adults, things like that. But in terms of who they are and what they want to be in life, I try to embrace that.

This all makes me think about Nat and perseveration. The age-old tension between Autism Educators and Autism Supporters. Being told when Nat was 5 that “whatever he is able to do in life is up to you and the effort you make.” Constant vigilance against the Evil Stim. Slap it down, redirect it, interrupt it, retrain it, give him something else to do, something Age-Appropriate (meanwhile, have my other two, NT children ever done anything Age-Appropriate? Beanie Baby play well beyond kindergarten years; infantile video games; wearing costumes; never evolving into Boys Who Play Sports…) How shaming is that?

I think I knew that it was not my way, even then. That was before I was self-aware. I would lazily reinforce the training Nat’s teachers gave us. I would bastardize the behavior charts into other things, into little storybooks and songs, to turn this disciplining into a game, something fun and natural to me. Increasingly, I would say that “the way I am supposed to raise Nat is really not in tune with my natural parenting style.” It wasn’t until I had some validation from Exceptional Parent Magazine, who actually bought an article from me, my first, in 1997, that I realized that maybe I did know a thing or two. For years I looked for a psychotherapist like R who would work with Nat, making sure he was happy inside and finding ways to express himself and be himself. But, of course, no psychologist would treat Nat with cognitive therapy once they heard he was autistic. They would insist that he needed — you guessed it — behavioral therapy.

That, combined with what R was teaching me, allowed me to eventually create what we now do with Nat: get ourselves to a point where we let him do whatever he needs to do and embrace it as a part of him. To be good to him, and never shame him. I hope I remember to do this, every single day, for him and for me.

His mother cried and held him tight
His father asked, “Are you alright?”
— Maurice Sendak, Pierre

I stand at the door, peering at the empty road, frowning at each car that is not it. My hands stuck to my hips, I’m a slimmer, darker version of Grandma, stocky and pink, teased and glued yellow hair high above her head. Grandma used to watch for us to arrive; you could practically see the waves of impatience shimmering above her head.

I am watching for Nat’s white van, having just talked to T on the phone about the week at school. This is a ritual I enjoy, even though I hate it when my phone rings, a vestige, perhaps, of sensory issues of my own. But when T calls, I just have to listen for the most part, and then compare my home experience with Nat to hers during school. Home, school, and House have regular contact to keep Nat pinned to a safe and happy reality in our minds.

“Overall his week was good,” she began. ‘Overall’ snapped me to attention; and I’m paraphrasing here, of course. “He did have one outburst, but Sue, it was the weirdest thing! He did not utter a sound. It was a bite to his arm, a pinch, and then he cleared his worktable. Then, he was fine for the rest of the day. And of course I have no idea what the trigger was.” She might have said “antecedent;” this is a modified ABA classroom, after all. Most people don’t usually put the words “ABA” with “humane and loving,” but I will say it every time about Nat’s experience there. Those teachers adore him and no one gets more pleasure out of his ways than T — other than me. We agreed that the lack of such outbursts in months and months, must likely mean that he is finding more ways to communicate his needs and observations and accommodate us, and we are learning better how to communicate our needs to him, and understand him and accommodate him.

“Today,” she went on, “was amazing. During Morning Meeting, one of the boys went up to the board to place a velcro picture of a teacher who was here, and I guess the velcro — something was wrong with it, but none of us noticed. But Nat did. But instead of leaping up, and being upset, the way he might have last year, he said, “Nat fix it, Nat fix it.”
And so I said, “Nat, what should we fix?”
“The card.”
I looked and saw what he meant. I was SO proud of him, and how much language he has acquired, and ability to use it.”
I knew what she meant. Such growth.
“Oh, and that video you sent me — Oh My God –” she said, referring to Amanda’s video, which I have looked at again after some time. (I know, I know, this is the third time in two days I’ve linked to it, but the insight is just breathtaking, and T thought so, too). “I have never thought of things that way. But I have had thirty-something students and now — ” I knew just what she was saying, and I feel like this is what Jews mean by Tikkun Olam, healing the world, one person at a time.

I am ready and eager for a Pierre-like hug and kiss, with my Natty, my heart just slopping over the edges with delight and motherly pride for my pride.

The bus swings up, the driver cheerfully greets me with her cigarette-roughened voice. And there he is, taking the front walk in leaps; his usual pace. Nat is home, my Friday Special Delivery.

I am now calling for advice for parents, words of wisdom and encouragement and honesty (all or some of the above), from ASD adults, whether you are parents or not. Obviously one can’t generalize or apply all advice to all cases, but I’m sure there will be some important messages you’d like to convey to autism parents, along the lines of Amanda’s video or Jim Sinclair’s “Don’t Mourn for Us.” (In fact, if anyone can forward this to Jim or Amanda, I’d love to contact them myself, if that’s possible.) I am also interested in resources from ASD adults, whether blogs, books, or associations or organizations that have felt helpful, empowering, and/or informational to you; also conferences (like Autreat?) that parents can attend to help them feel less confused, and more able to nurture and to parent successfully.

If you have thoughts on various approaches that you feel are helpful for you (fun, educational, therapeutic?) please let me know. I would also like to know what has felt hurtful or harmful. This book is about spectrum: I have the full range of experiences here.

You do not have to post a comment; you can simply email me your responses and please indicate your first name, age, diagnosis, and location, and whether I can use your words.

I was working on the last chapter of my book, where I talk about parents’ recommendations for the future, and a young man with Asperger’s wrote to me, asking if I’d like his opinion. I am so glad that he did that, because it got me thinking again about Nat and wondering about the world from his perspective. I guess I had been thinking about how stimmy he has been lately, and I was now feeling a little guilty about letting him be that way. You know, aren’t I supposed to be trying to make him as “functional” as possible? To blend in? For that is what I’ve heard many times, from educators and others.

And suddenly, after reading what this young man wrote to me about how nonverbal autistics need more tools to help them communicate and to help the rest of the NT world to understand them, I was so ashamed. I thought of Amanda Bagg’s video, and watched it again. I had a lump in my throat watching her familiar movements, and it made me miss Nat so much, and then I was so horrified at myself for having momentarily lost what is most important: letting Nat be Nat. Amanda shows herself, throughout her video, going through every one of the five senses, interacting in one way or another with something in the room, rocking and looking veyr much the way Nat does when he is doing his thing. She says, (and I’m paraphrasing, and I hope this reference is okay with her) “Ironically, when I interact with every aspect of my environment, it is called ‘being in my own world,’ but if I limit my responses to only a limited few things, I am thought to be opening up to the world.” She also says (paraphrasing again) “My inability to speak in your language is seen as a deficit, whereas your inability to speak in mine is seen as natural.”

Watch this video and you will, hopefully, really feel what I am saying.

What would make your life work better? What would help you the most, in terms of autism in your life?

I dug back into my book today, and I have to say I really like how it’s turning out. I love all the different people I have woven together chapter-by-chapter; the differences and the common denominators. It blows my mind how much we all have in common, and then again, how sickeningly alone we can be in this life.

Now the questions that keep popping up are: What should research and government put their energy towards? What is most needed in the coming years? What is most needed now? Why? How does your answer relate to your own life?

What would you like to see scientists focus on the most, about autism?

Where would you like to see money going, whether raised by private organizations or made available by the government?

What external development would allow you to be a happier person?

What do you need to do internally to be a happier person?

Please respond to any or all, thinking of how autism touches on your answers. Also, indicate your name and your child’s, as well as child’s age, diagnosis, and where you live. And make sure you give me permission to use your words and to call you. Pass this on to any autism parent you wish, I am looking for a diversity of perspectives. Think Spectrum!!

And thank you!!

In this unusual November, where leaves stayed on the trees halfway into the month, a week ago we wore tee shirts but today there will be snow, my (extended) family has experienced a birth and a death. On November 6, my nephew Willy was born, a beautiful squishy sweetheart of a boy. Ned’s sister Sarai is a (first-time) Mommy of this wonderful new life (she and Ed were married 2 1/2 years ago). They seem to be doing well (enough), and at the time that I have written this I did not find out if I can post pictures.

And yesterday, Ned lost his 97-year-old grandmother, Victoria Marcus Olds. Ned is named for her (his middle name is Marcus, which is her maiden name). Grandma O was quite a dear person, lively and bright, warm and loving. She felt like a grandma to me right away; she was very easy to be with and she really cared about what each and every one of us was doing/thinking/working on. She is known for how she would ask us question after question. I always loved that about her, and I will really miss her. Ned wrote a beautiful piece about her last night that really says it all. Good-bye, Vic.

For Nat’s party we had a total of sixteen kids, and various adults. Everyone bounced in the Moonbounce, which listed and sagged a lot because we were far exceeding the weight, age, and number limit. But we have found that those Moonbounces are kind of indestructible, as, apparently, is my house. After everyone had had their bounces’ worth, and then a piece of the cake (which was a blue van on a road, because a lot of Nat’s friends really love their vans), I invited everyone to come into the house.

I had not planned an indoor party; indeed, I had not planned much beyond the Moonbounce and the cake. I didn’t even have food offered! (Adults standing around with nothing to eat! What would Mom say? But I did have lots and lots of orange soda and Sprite! Still, I think I heard a groan of shame all the way from my childhood home in Connecticut.) The House staff who had come along all looked frozen as they stood their watching kids bounce or helping kids get their rightful cake. So I told everyone to go indoors and we would watch Nat’s new movie “Oliver and Company” (that’s the one with the dogs, plus a cat, although frankly that could describe maybe half of Disney’s movies).

So we all crammed into the livingroom, 5 on the window seat, 5 on the couch, and others hanging around standing. We all watched the big blue screen of the TV while the film rewound (Nat never ever rewinds when a movie is over). I was so happy to have all of them there, just sitting so patiently, everyone so sweet and eager, and especially Nat, who was just crazy happy. So happy, in fact, that he was upstairs for most of it! (Too Much Joy).

Nat’s 19th birthday party started with lots of cake: one Moonbounce cake, and 2 boxes of Duncan Hines cake (one yellow, one chocolate). For the edible cake, we had decided to recreate Nat’s van that his social group uses, a dark blue minibus. Even for the kids who were there who were not in the social group, vans are usually an important fixture in life!
… See my Tabblo>

The first time ever I saw your face I thought the sun rose in your eyes. –Roberta Flack

It’s Nat’s birthday. He’s practically dancing around the livingroom floor, giggles in his voice, right arm punctuating his words. I’m warm and comfy, on my favorite couch, covered in the lilac afghan. About to get coffee #2. Trying to wash the Nyquil taste out of my mouth with coffee. Watching “Beach Party At Disney World,” with Nat. He is especially taken with the Beach Boys’ number “Surfin’ Safari.” When it started, he stopped his JHS and covered his eyes, smiling. He looks like a cucumber, wearing green sweats and a green shirt. It is just so lovely sitting here with him on his 19th birthday.

I’m of course remembering that morning. It was the third day of false labor, and no sleep. I called Mom to complain, and she said, “Call your doctor.” She couldn’t stand to wait for this baby any more than I could! I called Dr. Lichter, no longer my doctor, and he said, “Okay, let’s have a baby.” I was so relieved, and in my nube Mom mind, I was going to have my new baby imminently! Of course, it wasn’t for 12 more hours before I would get to see that shana punum, the “ball with a face painted on it,” as Ned called him.

Newborn Nat was like a plucked chicken, but we could all tell that his face was perfection, and it looked like he had red hair.

We have a moonbounce due to arrive sometime this morning, and (I think) my parents are coming. We moved the party to tomorrow because today is supposed to be mostly rainy, but it looks pretty good right now. In preparation for Nat’s birthday today, Ben, Nat and I baked the cake. That’s just for today; if we still have the actual party tomorrow (Sunday), then we have to bake another cake for that, for when all his friends are here. We decided on Parks and Rec van cake; that’s the navy blue bus that his Social Group takes on their trips. Mallomar wheels and Lego Social Group members. Hershey bars for the road. So it’s going to be two cake boxes’ worth of cake: one to go into two loaf pans for the van, and one flat cake for the road. It’s probably way too much cake.

For presents I’ve bought: 2 VHS Disney videos (Nat prefers old media): Fox and the Hound, and the one where Billy Joel sings, I can’t remember it right now, with the dogs; a huge pepper grinder (he loves grinding pepper); and a huge Reeses peanut butter cup-shaped pillow! Max and Ben are burning him a CD of songs they like, and we’ll also have pancakes and bacon for breakfast.

On my boys’ birthdays I always like to think about how they began, what each of their labor and deliveries were like. I love thinking about the Before and After of My Boys, remembering what life was like before they came into my life, and then the first moment I saw their faces. Nat’s beginning was special in so many ways, and the very first one we were aware of was our transformation from couple to family. Happy Birthday, Sweet Guy! Here’s to you!

(taken when Nat was 2 mos. old, at Laura and John’s wedding!)

I still do not know what to do about my missing Nat so much. This feeling makes me want to bring him home, take him out of there, even though they seem to love him and care for him well. It has nothing to do with them. It is about me, and this unresolved pain. I can’t stand it. It still flares up, every single day. Planning his birthday is especially hard. Thinking about Chanukah, and what to do for the eight days. Wanting him home, then seeing him just lie around on the couch when he’s here.

Sometimes I do not know where I end and Nat begins. I cried to Ned last night, lying on his shoulder, the best bed on earth. “I want him back, I was wrong to send him away,” I said. “Can’t I have him back? We promised each other that if one of us was unsure…”
Ned waited a moment, as he does, measuring his words carefully. “We can,” he said at last, “but I don’t think we should. He’s doing really well there.” Then: “Does he seem sad to you?”

This made me cry some more. My nose was flooding, disgusting. I think Max and Hannah could hear me down the hall. “No,” I said. But it did not make a difference. I just kept crying. “I shouldn’t have done it,” I said. “Why does it have to be this way?” It. It was this way, meaning, there is no good solution. It means that there were times when Nat really scared me, and his brothers. There was a time, a year ago, when he could not be calmed, he was anxious all the time, and he would fly into rages, running out of the house, pinching us, scratching. As if he were telling us he could not stand to be here, either, with our unpredictability, our inability to understand him, our noises, our lights, the stupid weather, sudden changes of plans. What could I do? I could not handle it. I can only do schedule boards and penny rewards and calendars and stay organized for so long. I’m naturally sloppy, changeable. I could not help him. Why did it have to be that way?

And then even when things improved in Nat’s attitude, there was the Sword of Damocles, the post-22, the end of childhood to consider, ready to drop upon us. There was the matter of the state’s cruel radar screen. The bureaucracy that determines who gets funding as an adult and who does not. The legend that goes around, that if your kid is in residential, he is more likely to get housing and supports as an adult.

It’s good for him, it’s good for him. Meanwhile I hear from others I know, adult autistics, about how they hated residential, how they hate Risperadal, ABA, all of these approaches we take in the name of helping our children. And I get so scared that once again I am on the wrong path. I had this child whom I love more than my own life, yes, that is true, I have to say that. And I feel sometimes like I have failed him because there are no real answers, there is no one I trust except Ned, and he’s telling me to hold on. So together maybe we’ll duck the Sword and the five of us will get out of this alive. I hope.

As a parent, I am not much into force. But sometimes I am able to push just a little bit if I believe there will be some real growth involved. I actually do not do this nearly as much as Ned does, and not nearly as much as I ought to because I tend to get weak in the moment. I forget suddenly what all my good reasoning had told me, and I just do the other thing. In that moment of lapse, it is as if I never even knew about all the other information that I had, or the experiences that have built up my stores of knowledge. I just see the sparkle of something bright and I lose my head.

I have always tried to honor my sons’ rights to their own, unique lives, but I have often made a mess of it. In trying to do “the best” for Nat, I would think and think and think and observe and read, and then I would go ahead and choose the inferior school program, because I was lured by the Fool’s Gold of the High Functioning Classroom, and the pressure would inevitably cause Nat either to tune out or act out.

Being weak in the moment is something I have dealt with my entire life. When I was eleven I started my first diet (yes! terrible. another blog post altogether) and I experienced the pain of hard work and days and days of struggle not to eat certain things, and then in one soft hole in time, I stepped right through and landed on my fat ass.

There were so many other episodes of my impulsive giving-ins, and not all of them are self-defeating. Many times I have found that my sudden change of heart/mind(?) led to something fruitful. (I had Nyquil last night so I am struggling to hold onto my point here. But there it goes because Oh my God I just looked up and the sky is on fire! Bright pinkish-orange shoots up behind the leafless black trees, framed by my window like this painting I saw at MOMA when I was little.) More coffee, hold on…

The weak moment can also be characterized as a sudden forgetfulness, an abrupt change of heart. Sometimes forgetting all that I resolved has actually led to new discoveries, wondrous epiphanies. I think the most striking event of this nature was that day that I was sitting on the couch with Nat, he was thirteen and doing that horrible loud laughing, as he had been for months. His school staff had told us to “redirect” him when he got that way, to use a box of cards that needed to be alphabetized, to hand him the box without a word (so as not to reinforce undesirable behavior) and cause the boring, absorbing task to draw out all the juicy laughter, forcing him to be appropriate.

(Is there any word more shaming, boring, mouth-pursing, fun-sucking, than “appropriate?”)

But I was so tired that afternoon. I hated the alphabet cards. I hated the obnoxious laughter. I hated the fact that my kid did not even laugh right. I slipped into vague despairing impotence, and impulse took over. I just turned to look at him, really look at him. So cute! I smiled tiredly. I poked him, and tickled him, as if to say, “You want to laugh? I’ll give you something to laugh about!”

He looked at me, laughing and laughing and dodging my fingers, but also loving it. I looked at him, and now I was laughing, too. That was when I had my first real connection with Nat. Weak moments can be strong stuff.

There have certainly been ways in which my other two sons’ will has been subjected to a Higher
Authority, namely mine and Ned’s. I try not to force Max and Ben to interact with Nat in any way that did not feel natural to them, but sometimes I wish I had, because their relationship with him seems so sparse; just the bones of politeness and respect, but certainly no evidence of fleshy brotherly love.

Last night when Nat called, or just before the time when I knew he would call, I asked Max if he would speak to him. Max turned red and shook his head. “Why not?” I persisted. I usually drop it then and there, because I don’t want to intrude on their relationship, and I want to respect Max’s right to come to terms with Nat in his own way. But — why? Why the F couldn’t he speak to his brother just once?! And the weak moment opened up.

The phone rang and I talked to Nat. He was very clear, also listening and answering questions well, and also asking a question or two: “How are you what you do today?” So after I was finished, I handed the phone to Max. And I watched him have his first phone conversation ever with his older brother.

I experienced so many feelings at once that I almost couldn’t watch. The conversation lasted less than a minute. “How was it?” I asked Max.

More red face. “I don’t really like talking on the phone to Nat?”
“You don’t? What?” I said.
“I don’t like talking on the phone to anyone,” he explained.
“Okay, but how was it?”
“Okay.”
“Did he ask you anything?”
“No, but he did answer my questions pretty well,” he said, sounding just a little impressed, for a nanosecond.

And the awkward moment passed. Had I done right? I think so.

I posted a question yesterday on one of my autism email groups (which consists of autistics and non-autistics, some of whom are also autism parents). I was wondering, as I often do, about how we figure out who are children are and what they are feeling. How much is projection, and how much is observation/reality? This question applies to any of one’s children. But I was especially thinking about Nat, and how I have come to think of him: as my Innocent, my Good Egg/Hard Worker, and my most Spiritual Child.

It was fascinating and illuminating hearing back from some list members. What I heard was that although it is harmful to cast your child in a negative projection/concept, e.g., a “Devil Child,” my “Bad Seed,” “Brat,” etc., it is just as harmful to cast your child in a simply positive projection, especially if you believe that your child is only this one thing, for example: “Angel,” or “God’s Child,” things like that. That you do your child a disservice by seeing him in just this one way, positive or negative, because you deny his human complexity. Any person may be all of those things and more, at some time or another. It is impossible to fully know another human being.

I agree with this, because I know how horrible it is to be summed up and then often dismissed. I hate when people think they know me, just based on a few signs. But just as horribly, I am guilty of it all the time. I do that with all of my children — maybe with all of my loved ones. It is wrong; but it sure makes life easier. I think of Ned in particular ways, whether he agrees or not. And Max and Ben, of course. I think of one of my best friends as “Stable,” and God bless her for that, at least one of us is. And the thing is, I don’t think of Natty as being able to communicate with the angels or anything like that (I don’t even believe in angels!). It’s just that he always jumps up to go to synagogue, when the other two of my boys sulk about it. And he knows all the prayers, and happily endured a bar mitzvah. So he is my Spiritual one, simply because he is moreso than Max and Ben. But he is not just that.

I guess that the danger with getting to know an autistic human being is that the signs I go by typically with others for information, are not necessarily there with Nat. He does not necessarily smile even if he is happy. He talks to himself when he is happy but when he talks to us he becomes anxious. There is clearly a lot going on inside him, and that is the part that is both wonderful and tragic: that he is every bit a multifaceted young man as Max; but it is so much harder for me to discern his unique parts.

I believe that we are all human and so even if the signs Nat sends out are sometimes not what they appear to be, I think that I can interpret what I see through my own filter, because that’s all I’ve got for now. I think it is better to try and interpret and even be wrong, than not to try at all. Trying to connect is better than not, in my opinion, though I’m sure there are those who do not see the value in connecting. And of course you always have to keep in mind your large margin of error, and continue to try to understand what he means when he does or says something, rather than what you think he means.

Does this make sense? Your thoughts?

This is a day off so I have time on my hands. That can be an ugly thing for me, but it can also be fantastic. I am soon going to rake leaves in the sunshine with Max and Ben, and that will be lovely, plus it counts as an exercise (according to my number one exercise resource, Dad). The only thing that would be better than that would be to have Nat here for the raking. He is a total leaf workhorse. He rakes and rakes and he bags and bags. He doesn’t need to stop to jump into a pile. I know I’m idealizing it; there were so many times when he would just stand there moving the rake up and down and not accomplishing anything. Other times he would have screamies or tantrums but when we told him he could just go inside, he’d scream more. Well, he is just not like that these days, and I know he’d enjoy it and be helpful.

Even though it is lovely out, I cannot run or bike or gymnify because I am still giving my knee-hip-heel-lower back a rest (all on the right side, mind you! What would an aura reader think about that, or an orthopedist? This Enquiring mind does not want to know.) so I will probably dance tonight; plus it’s been over a week since I even did that! Ick.

Here is what I want. A vintage 1970’s Fifi Abdou style costume. It even has tiny puffed gauzy sleeves and an ostrich feather cape! Can you think of anything more wonderful or inspiring for dancing? You would feel like Disney’s Cinderella in it — her dress was kind of blue, I think. I have not bought a new cossie in months and months and months. I have been trying to make cuts somewhere, but unfortunately I just bought some amazing new boots at JCrew (half price, made in Italy!!!) so what’s a girl to do?

Nat keeps sounding tiny and spacey on the phone when he calls from the House. The staff told me that the only decent phone is in the livingroom, where there is a lot of noise. I keep forgetting to go and look at the phone setup when I’m there. When I bring this up to Ned, he talks about buying the House a really great phone, one which could be moved to a quiet room. That would be a solution to the specific problem of being able to hear Nat better, and get him into a quiet space. But to me there is a bigger problem: the way that I feel when I hear Nat’s little, spaced-out voice, which then makes me wonder how he is feeling.

Maybe I’m projecting, you might be thinking: You are layering onto these conversations your own feelings of missing him and self-doubt. You would be partly right; how could I help but project? A friend told me recently that I always have at least one other conversation going on in my head, in addition to the “real” one in front of me. I had never thought of it in just that way before, but it is true: I will be talking to someone and hearing their words, processing and responding to them, but inside I will be imagining all kinds of other words, things I could say back but I am censoring, that might feel rude to ask, that might sound flippant, disrespectful, and all kinds of mean and nasty. Irrelevant stuff, inaccurate stuff. I have learned over time to sort out what can be said and what should be thought, but I still do not get it right very often, as you can see by what I write on my blog. People ask me, “How can you put stuff like that out there?” And I feel a little proud but also a little hurt by it, because there is this implication that I’m maybe freakish somehow by being so — “brave,” they say — but what do they really think? (There I go again with my alternate conversation.)

Nevertheless, I wonder. People say, “Your heart will tell you what the right thing is.” I always feel frustrated by that one, as well. I listen to my heart, but with my ears which are connected to my brain. My brain interprets my heart; my heart can’t do anything but send out feelings (and blood and all kinds of warm and lovely). How exactly to you “listen to your heart?” That’s fucked. I think that to listen to your heart, you have to look at all the evidence in front of you — all of it — and you also have to figure out why you always feel a certain way when confronted with this issue. You have to pay attention to both conversations going on, in other words.

So while all around me there is evidence of Nat thriving in the House: ability to converse mostly on his own (sometimes) on the phone, no outbursts, utter willingness to work, play, attend school, learn, and care for himself, there are also the things I see and feel here and there that are the other conversation in my head/heart. I mean things like the spaciness of his conversation at times, the spaciness I see when he’s at home, the je ne sais quoi I still need to hear about his day. The staff does everything right in reporting to me: school day, goals accomplished, demeanor at different times, etc.

But then there is the feeling I have that I am not getting what I need here. There is something I am still not knowing, and then that ends up meaning that I don’t know what Nat is feeling about the whole thing. That, of course, is the puzzle piece I deal with these days. Not the “mystery of autism,” or the “need to solve the puzzle,” but the question of “how does Nat feel about being in the Residences?”

What if the “evidence” everyone presents is just others’ interpretations, others’ attempts to draw a conclusion of success, and yet is not accurate in terms of how Nat is feeling?

And the real question is: how do Ned and I weigh the benefits of Nat’s living outside our home (for there are many) with all of the unresolved, unknown doubts and feelings?

How do you resolve these kinds of Big Questions? How do you give credence to/dismiss the other conversation in your head?

It is way past Halloween, and this post may seem as stale as your kid’s bag of leftover Mike-and-Ike’s and Milk Duds. Nevertheless, I have consulted on the matter of candy with all three of my sons, who are Sugar Addicts, marking their favorites so that I know how to properly reward and indulge, and I have taken stock of my own corn syrup proclivities. All of this is to completely rebut this particular blog, where one blogger claims to have accurately found the ultimate Candy Hierarchy.

He lists at the very top, the top, mind you: Caramel-based candy. Okay, that is just wrong. Caramellos? Please. Right up there with the aptly-named Milk Duds.

He puts chocolate-based candies second. Second! Most women of the world would disagree right there. Come now, we all know that chocolate is a magical elixir and caramel–? Well, the best you can say about caramel is that it has the magical quality of sealing your teeth together, a la Dr. DeSoto.

1) Chocolate-based with a highly intense added ingredient (as opposed to pure chocolate. Chocolate-based has the necessary added oomph that takes a wonderful but monolithic taste and juices it up with that extra twist. Chocolate is like the beautiful ballgown, but Chocolate-based is the ballgown + tiara.) For example: Cadbury Chocolate Creme Egg; Reeses peanut butter cups; Milky-Way; Mounds; Almond Joy; Snickers. I don’t count Three Musketeers because the nougat by itself is too bland (Ben disagrees) I don’t count Baby Ruth because peanuts alone are too salty and therefore almost spoil the chocolate (Mom disagrees).

And now I have to add an exception to my own rule: M&Ms; must go in the top-tier and I submit that the colored coating on the outside is indeed that extra bit that sends the little chocolate pill of delight into a narcotic-like perfection. My proof is that my sister used to eat only the candy shell (by sucking the outside of the M&M;) and then she would give the soft inner chocolate to me, which although it sounds disgusting, was actually quite delicious, having been warmed and perfectly softened by her loving sisterly saliva). Charleston Chew is in this category because the nougat is vanilla flavored, thereby helping propel it to the hallucinatorily delicious levels.

2) Second tier: The Chocolate-based with only one, non-performing or counterproductive additive (see above). Also includes the disappointingly cracker-like dry KitKat of Office fame; Twix (see KitKat); Milk Duds; 10,000 Dollar bar (still in production?); Rollos; Whoppers (interesting but chalky); Tootsie Pop.

3) Third tier: Plain Caramel. Caramellos; those plastic-wrapped cubes you get in places like Williams-Sonoma or Starbucks. But at least they are still sweet and chocolate-like.

4) Fourth tier: Fruit-flavored. Skittles; Starburst; Warheads; Now-and-Laters; Jolly Rancher; Lollypops. Fourth tier are candies you will eat only when all the other categories are gone. They are not terrible, they are just plain weird.

5) Fifth tier, not even a candy: Nuts; raisins (“Nature’s Candy” Ha! Only if you are a regular patron of Wholier-Than-Thou Foods) ; candy apples; Sweet-Tarts (almost like flavored aspirin); Smarties; Pixie Stix; Wax Lips (sorry Laura, but it’s a candle without a wick); flavored medicines (just kidding, do not try that at home).

I don’t know where to put Tootsie Rolls or Rock Candy, but I love them; they are almost in the First Tier but they break my rule.

6) And finally, the bottom Circle of Candy, really a Candy Hell: Diet candies, Weight-Watchers, and those which are low-carb because they are made with sugar alcohols. They taste very much like real candies, but if you have more than say two fun size, you will have nausea, diarrhea, and other nasties.