Susan's Blog

Thursday, December 13, 2007


The back of my hands are bloody and my spirits are low. Big struggle this morning with Nat, especially between him and Ned. Nat would not sit down in time-out this time. That’s a first. His arm is a mess from his biting. He let me clean and bandage it. I was struck by the odd juxtaposition of little blue ice bunny sitting atop Nat’s muscular bruised forearm.

I can’t get the image out of my head of Ben racing upstairs to escape as Nat came close to him. “Dad! He’s biting his arm again!” he shouted. That’s when the struggle really began. I was upstairs trying to get dressed for Ben’s class Breakfast Share. (Ben had a supporting role in a skit, “Native American Cinderella.” He had been so excited about it; his classmates had all said that he should be the one to play the Chief. So last night he constructed a mask with feathers on it. I couldn’t wait.)

I got dressed without showering and ran downstairs to help. I tried desperately to smile so that Ben would focus on the upcoming excitement. Ned hurried Ben off to school while I stayed with Nat. I felt like I was guarding Max, even though Max is so big. It is the unpredictability and the adrenaline that pumps through Nat that makes it so frightening. I tried to make myself calm — invisible, really — so that Nat would not detect my fear. It only worked up to a point. He eventually came up to me, clawing at me. I stood my ground and kept my voice soft, trying also to rescue my hands, but he is very quick and strong.

I have set up a meeting with our team to talk about planning his residential placement. In the early fall Ned and I went on a tour of some, and got an idea of what they can offer. There is a waiting list, which is a good thing, because it gives us time to plan and transition — all of us. I tell myself that Nat is 18 and it is not horrible of me to plan this. That it is probably better for Nat, to have round-the-clock structure. That it will be better for Ben, not to have to live with fear.

I tell myself a lot of things.

Tuesday, December 11, 2007

What’s Some Money For Peace, Love, and Understanding?

Working on respite time with Ned. It’s been a few years since we went anywhere away from the boys overnight. These days, we have to pay for respite and it is tough to find people. I am trying to get the young woman who was Nat’s aide at camp this summer. I want three nights at least. I am feeling so in need of escape, that I have even had some rough times with Ned, and that’s rare.

The mornings yesterday and today were hellish, because neighbors’ lights are all off kilter, at least in Nat’s mind. I had to call another neighbor today and ask her to turn an outdoor light off. She was happy to, but I wont’ always be so lucky. Plus, Nat insisted on wearing shorts today — with snow on the ground — and I gave in. I warned him, “Tomorrow, pants.”

Yesterday he smacked Ben on the head in all of his anxiety. He also bit his own arm, and I forgot to tell the teacher so she wrote up an incident report. Ben was so mad at Nat, he was spitting nails. I couldn’t blame him. I felt so horrible for him, for both of them; but especially Ben. Sometimes it feels like Ben has no peace anywhere. School is hard, home is hard. I don’t want to hear about how kids are resilient. I’m not so sure. I am so concerned about his happiness.

This feeling led me, strangely, to the Apple Store, where I impulsively splurged on a gift for Max, who also seems to deal with a lot of tough stuff on his own. He is such a darling. He always lets Nat come in and lie on his bed and sillytalk while he is doing homework. He never complains about Nat using/abusing his pillow; he just quietly tells me and asks for a new one or a clean pillowcase.

So with my heart soaked in sadness and love, I bought Max an iPod Touch, a very cool piece of technology. And the saleswoman asked me if I wanted to get my other son (whom I’d mentioned) his own Nano. I knew B would hate that; he hates music. But suddenly I felt like I just had to find something really, really great for Ben. I had to, I just had to get Ben exactly what he wanted for Chanukah. No matter what it cost. Why would I get expensive trifles for Max, and anything at all Nat wants, and not get Ben a Wii? What the hell is that all about? Afraid he is spoiled? But he is not; he is troubled. And if I can buy him a little peace of mind, it is well worth braving the prices on

I went on line and found one. Oh, they’re there, if you want to pay through the _ _ _. I checked with Ned if he minded the price. He was surprised at first, but actually he saw how I felt and agreed. I bought it and felt really, really good, albeit also like a jackass. Hee Haw. What’s money for, if we can’t try to buy a little peace, love and understanding once in a while?

Monday, December 10, 2007

Letter to NYU Child Study Center

Dear Readers,
You may not agree with all that is written here, but I advise that you craft your own letter in protest and send it to the following people listed below. I also have alerted different contacts I have in the national media; you should do the same, especially those of you in the New York area where this could be considered an interesting local story with a national hook: autism, ADHD, depression, and the treatment of children. We need to push back on these attitudes example-by-example in order to create change in the world.

Subject: Ransom Notes
Date: December 10, 2007 6:36:35 AM EST

Dear all,
I am the mother of an 18 year old boy with autism, and author of “Making Peace With Autism: One Family’s Story of Struggle, Discovery, and Unexpected Gifts” (Trumpeter, 2005).

I think you meant well in your ad campaign for autism and other psychiatric disorders, (“Ransom Notes”) but that you are actually way off the mark. Ultimately you will do harm with this ad, even as you do some good. Yes, it is true that people who suffer from disorders such as depression need appropriate help and treatment to save their lives. Yes, it is true on some level that autistic people, left uneducated, will probably deteriorate in their functioning levels. Yes, it is true that symptoms of ADHD can be ameliorated with different educational strategies and/or Ritalin.

What you do not realize are the other implications in your ad. Pain and suicide are horrible, horrible outcomes, but to use a ransom note ad to get people to understand is ridiculous and offensive. To act as if social difficulties (Asperger’s), or learning difficulties (ADHD) are keeping ones child from one implies that you have some kind of magical solution and that it is the parent’s fault if your recommended actions are not followed. And, finally, to equate autism or not being a fully independent adult with being kidnapped, is irresponsible at best and insulting and demeaning to those with this disorder at worst. You also purport to be able to change the autism with your interventions, and that all it takes is a phone call to your clinic. That is an outrageous claim on so many levels. Does this mean that the parents who called other specialists, tried other interventions, etc., and yet their child is still fairly severe, did not do the right thing? Does this mean that being unable to live independently is somehow shameful?

It is the fact that there is so much social stigma coupled with not enough supportive or educational resources that is the shame here. The lack of funding, resources, and understanding are what hold families hostage. And you have just added to that.

You should not shock, bully, or insult people into taking certain actions, not if you are responsible medical professionals. These are scare tactics and I think you ought to reconsider.

I am posting a link to my blog, where I explain my issues with your ad, through personal example.

Susan Senator

Sunday, December 9, 2007

The Band-Aid’s Tale

While cleaning up the pantry, I cut my finger on a cardboard box. “Ahhh!” I yelled. “I hurt my finger and it’s bleeding.”

“You okay?” asked Ned.

“Mommy get a band-aid,” suggested Nat. He got up and said it again.

I was rinsing the finger and it really stung. Blood kept pooling up. “Yeah, Nat,” I said, “I think I do need a band-aid.”

He came into the pantry and opened the middle drawer. He rooted around and pulled out a box of band-aids I didn’t even know we had there. He drew one out.

I could have taken it from him but I was feeling lulled by his competent, decisive actions. Ever since I was little I have always experienced a small sleepy pleasure in watching someone else do something they are good at, especially when they are doing it for me. I felt that familiar soft drowsiness settle over me as I said, “Nat, will you open it for me?”

His deft fingers parted the paper edge. I was surprised by all of this, because I find band-aids really tough to open the right way. With me, it’s just rip open anywhere and hope you don’t tear the band-aid. Holding my finger out towards him, I said, “Will you put it on me?”

He did. I loved feeling him hold my finger and tamp down the band-aid around the cut. It is the first time ever that I felt Nat taking care of me, I think.

It held up through dinner and several dish-washings. Thanks, Swee-Guy!

I Pick You Up

One of my most poignant memories of all time is of walking up three flights of stairs to our top-floor condo. As I walked, I was holding Baby Max, stroller draped from my elbow, and Little Nat was reaching up to me, stumbling over my legs, saying, “I pick you up, I pick you up,” in classic, autistic echolalia.

But no, I could not pick him up. It was not humanly possible to carry both of them. There was nothing I could do to help Nat understand that I really, really, wanted to, but I just could not.

I do not ever think to myself, “Why did Nat have to be that way and need me to pick him up?” Instead, I will always grieve the fact that I did not have more arms. And now, as the mother of much older boys who would never in a million years say such achingly adorable things to me, I only wish I had sat down on the stairs and let Little Natty just climb aboard for a few seconds. Why was I in such a sweaty hurry to get upstairs, anyway?

What really matters is for parents to be able to love their children, help their children be who they are, while still being able teach them to stand on their own as much as possible, and being wise enough to know the difference.

The above is the NYU Child Study Center’s latest ad campaign. (please click and follow instructions about how to express your reactions to this campaign) It gave me ugly chills. As my readers know, Ned and I have been going through the guardianship process for Nat now that he is 18. We are doing this guardianship because we do not believe he can make decisions for himself in terms of his best care. So I look at this ad and I understand that what they are getting at is not untrue. It is the “caring for himself” part, in particular that is hard to argue with. What parent does not worry about how his child will care for himself? But Ned and I can see that Nat cannot — yet — take a trip to the store on his own, crossing streets safely and interacting with the clerks successfully, remembering to count change, etc. Ned and I would dearly love, would give chunks of our own flesh if possible, to help Nat be able to do these things. Why? Because no parent wants to be able to entrust their dear child to the care of others. It is too uncertain. That uncertainty makes me feel like I never can die. That is such a hard thing to bear that sometimes it actually makes me feel like I want to die.

Still, all of that does not mean that Nat is somehow wrong as he is.

Raising our children means, in part, to teach them how to survive on their own in the world after we are gone. To pick themselves up. But some people cannot do this. And it is, at best, misleading of the NYU Child Study Center to promise that they can succeed somehow where Ned and I and so many others have not. Nat, in many ways, is exactly as they threaten in this ad. Did we call the wrong Child Study Center (Children’s Hospital of Boston, and Massachusetts General, along with many Harvard-trained physicians and specialists)? Did we not do enough for our son, to care for him and teach him the ins and outs of the world? Hmmm. Or is he very heavily autistic and nothing would change that, and what he has needed all along is high quality education, encouragement, help — more picking up.

Nat is all that they say in this ad. Yet, he is a wonderful, loving young man — and I’m not just saying that because I’m his mother; I have proof! Seriously, he is that same person who asked me for love as a three-year-old, who cringes when his brothers are mad at him, who makes us laugh with his off-the-wall jokes and “silly” talk, who bakes a mean corn bread, who led 60 people in prayer at his Bar Mitzvah, who blesses candles in Hebrew any time anyone lights them (even at Christmas dinner!) who helped his swim team get the gold medal, who dependably delivers Meals on Wheels to needy people …. I could go on and on.

The NYU Child Study Center is trying to scare parents into action. Okay, it is true that people with autism, ADHD, depression, etc., need help coping so that they can lead worthwhile lives. It is way true.

But isn’t there a positive way to offer help and treatment? NYU CSC seems to be saying that if you don’t call them, your ADHD, Autistic, or Depressed, child will end up isolated, or horribly sad, or even dead. Plus, they are equating being like my son with being like those things: the worst thing on earth. You and I both know that it is not. Difficult does not equal fighting a kidnapper. Challenging does not equal dead. Treat depression, educate and support autistics, and their families, find the right learning or medical approach for alleviating the symptoms of ADHD.

Offer help, education, support, resources — without reviling the way some people are. Do no harm.

I prefer that society help parents like me pick our children up, in all their glory.

Saturday, December 8, 2007

The Power of Austin

‘Cause now I’m living on [Austin] Power
–EC and me, “Blues Power”

Who’d have thunk that after all that kvetching about plumbing and construction (“conshrucken,” as little Max used to say; he also once said that “at the end of the day, the conshrucken men go home to their mommies” Oh, Little, Little! So incredibly sweet.) that at the end of my day, I’d end up laughing my head off? Well, here’s what happened.

I am almost afraid to say it, for fear of a kaynahorah, but the putrid pipe plumbing project went extremely well. Those conshrucken men did exactly what they promised: they dug a huge, grave-like trench from below my pantry window out almost to the sidewalk and they removed tree roots as big as my arm, which were clinging to bits of broken old waste pipe. They put in a brand new PVC pipe, and they put back the dirt. All as it was getting dark, while it was snowing. I was so impressed that I gave them beers before they left.

There was a hitch, of course. We had no water for most of the day, and were forbidden to pour liquids down drains or flush toilets, and Nat had a half day of school. Not the best of circumstances for an already anxious young man, whose front lawn had disappeared under a minivan-size mound of dirt. But that young man has always been known as MiniMan (not to be confused with Mini Me) because he always does what he can! I explained to him, with lots of hugs, that we could not use the faucets or flush. He was okay with the flushing part (evidence of God), but Nat must, must, I tell you, rinse out his ice cream cup and wash after eating. Con brio, with a lot of splashing and watery enjoyment.

Ah, but I have crummy old sinks, so I used the rubber stoppers and everyone was happy.

Water back on by 5:30 p.m. and yard filled in so that by the time Max and Ned came home, it was as if conshrucken had not happened to good people.

We had a (luscious Purdue pre-cooked) roast chicken for dinner and then celebrated the fourth night of Chanukah, feeling very snug and smug about being able to check off one more really lousy house project. (Next: clean all the ducts and then, maybe, just maybe, start to lobby for a shower to be built in Max’s bathroom, the really big one with the big clawfoot tub where I take my baths. The one with the ugly linoleum! How is it that I still have linoleum somewhere in my house? And this way I could have a bathroom to myself, not shared with four males! Yes, in a house with four bathrooms, only one has a modern shower. But getting Ned to think about bathroom renovation is just a complete awful project in itself.)

I really felt like a movie. We have not watched anything all week, except 30 Rock and The Office. Ned suggested we watch Austin Powers, which B has never seen.

You see, over the summer my niece Kimmy — B’s best friend — got hooked on Austin Powers. She was great at imitating Fat Bastard: “I ate a baby once. Baby — the other, other white meat” and Beast wanted to know what she was talking about.

I popped popcorn and divided it into three bowls for sharing, depending on where you were sitting. I was lying against Ned on one couch; Ben was on the fat yellow chair; Nat was on the other couch under a blanket. Ned coaxed Max to come down and join us, so Max obliged (yay) and sat with Nat. I tried not to make too big a deal of the fact that we were all doing something fun together, but secretly I was so happy about this that it was tempting to just look at all of them as much as the TV.

Ben was simply delighted with it from the beginning, when it is revealed that his new bride Vanessa is really a Fembot (even he had never imagined those kind of guns). Then Austin is naked, except always covered by the opening credits. Then there’s Mini Me, and the phallic laser, I mean, how much more perfect? Sure, there were parts he did not understand, and we let it B. He was squealing with laughter, and so then were we all.

Friday, December 7, 2007

Black (for) Friday

Time for fun again. I am sick and tired of being sick and tired. I haven’t danced in a week. I haven’t had a new costume since my birthday. We’ll call this another Chanukah present.

Ned loves this one, so I am getting it. (Swimming pool not included; the seller lives in Texas and always displays cossies this way, where the lighting is best.) I’ve never had actual sleeves before, and I can always cut them off if I don’t like them. But it is black, with peacock-colored beads. What could be bad about that?

Leges Sine Moribus

A Day that will live in Infamy.

I have to say I am grateful that, no matter what I’m going through here, we are not fighting a war like World War II, the nastiest of nasties. From the gas chambers to the sneak attack on Pearl Harbor to Stalin to Hiroshima, that was one horrible, horrible war.

So I have some perspective. Although as I often say, we all have a right to our own particular wars — my great Grandma Sarel said, “Our own sack of troubles” — and sometimes it feels like my own little war here. Not on a level of WWII, Nam, or Iraq, but still, enough to make me wonder about the point of things. Yesterday I approached that dark question for a few moments, then turned away from it. Instead of trying to answer that one, though, I got in touch with a few lifelines (NS, EP, BB, RK) and stood my ground.

My war is not with autism, it is with the way this country, this world, leaves so many gaps between law, institution, and the families. I was told yesterday that I could “just go down to the probate court (about 40 minutes drive from here) and pick up the right forms, and make an appointment with someone there, and talk to them about what else we need to do, and then just do it, and then wait for our court date, while they run a background check on Ned and me to be sure that we are fit enough to be his guardians.”

Strange that the state of Massachusetts did not care this much about our fitness as parents when Nat was a completely vulnerable little boy. And once the state does ascertain our degree of competence, you can be sure they will not care about what happens to him. Certainly they will not be able to provide the help Nat needs to get by in this world. I am reminded of Penn’s slogan: Leges Sine Moribus Vanae. Laws without morals are in vain. We proved this much in World War II. We kicked the crap out of fascist rule. Now it’s time to enforce our disability laws with a real belief system. And money.

Thursday, December 6, 2007

Rotten Form(s)

Sunny days that I thought would never end
Lonely times when I could not find a friend
— JT

Please excuse the rant. I am at my limit. I have nowhere to go with this except my blog. I have tried and tried. Sometimes people ask, “How do you do it?” Well, I’ll tell you. I don’t always do it. Some days I just don’t. Some days are just cold barren wastelands, like my iced-over backyard. Even if the sun is shining.

My lawyer calls the guardianship a “fairly simple, logical process.” But it is not. I get inconsistent information from every single party I talk to. I have no forms. I have no affidavits. I have no court dates. No one gave me them. I have to find a way to get people to get me the right stuff and make it all go legally correctly, and all I can think is, “Why is this so hard, so stupid, so rotten? all I want is to be able to make Natty’s decisions for him for the rest of his life.”

And actually, I don’t want that.

Ned is in endless meetings and is not really involved with this. Nevertheless, I need someone to share this with.

There is no one. Everyone’s got their own lives to scramble through, their own maze, their own black holes to climb out of.

Sometimes I just want to let go of the rope and see what happens.

Wednesday, December 5, 2007

Wii Need One

Ned and I want to get Beastie a Nintendo Wii. I saw my nephew’s and it is pretty cool, all the different ways to play with it. Dumb name, good product. Even Max agrees. They could play it together and perhaps there would be a way to also hook Natty. A dream come true: my three boys playing together.

If any of you dear readers comes across one and you would like to help make Beastie smile, email me! I will not pay black market prices, however, and no scams, please. We’re talking Chanukah and Christmas spirit; big-time important stuff. You-Know-Who is watching…

ps. don’t tell him!

Smart ALEC

“Knowledge is good.”
–Emil T. Faber, Faber College

Something I would like to recommend to all of you: meet with your police community relations people to exchange information on autism spectrum and your public safety needs. Some police forces and first responders are already doing ALEC trainings around issues to do with autism and best approaches, etc. Dennis Debbaudt was instrumental in creating the ALEC training. He is a former cop and a dad to a guy on the spectrum, so he knows from where he speaks. (He is also a fun and inspiring public speaker. We have presented at several of the same conferences.)

Last night our autism parents coalition (another recommendation to autism parents: organize, organize, organize. There is strength in numbers and if you are not getting the services you or your child needs, bring a group to your local Board of Ed or School Committee. Trust me, nothing gets their attention more than a large group of enthusiastic citizens!) met with the Brookline police, who have already had the ALEC training, for more of a personal autism information exchange. Ned and two other parents told stories of run-ins with the police and their ASD children, and the cops commented and advised, and then we parents asked a lot of questions. There were parents of kids of all forms of ASD, and all ages. One family even brought up their fears for their black autistic son, vis a vis potential racial misperceptions. I talked about ASD and some kids’ tendencies to touch themselves or others inappropriately, just to make the police aware of the whole potential Sex Offender nightmare. Others talked about the fear to call for help, because they did not want their child removed to a psych ward or hospital.

The main lesson that came out of this night was that the more info we ASD parents and citizens can get to the police for their convenient reference (info like: photos, preferences, “hates sirens; loves bodies of water; hates the color yellow; will not tolerate the word ‘not;'” motivators, hiding places, strategies for approach) the better off we will be if, God forbid, there is bolting or some other incident. Knowledge is good.

Tuesday, December 4, 2007

Digging Deep

This is a blog post that is merely a news report, nothing pithy, and therefore, nothing to pith anyone off. What is on my mind today is water, but really, deep down, worry about water. We are getting that $#@ sewage pipe replaced — all 30 feet of it — out of our front lawn. The water will be off all day. No little drinkies spilled down the drain, no flushes. Who will be the first to forget?

This job is a result of a video that was taken of the inside of the pipe, that revealed tree root invasion in eleven places, and pipe so broken that it is not meeting up with pipe in three places. How will they do this job, with snow on the ground and the air temp being low thirties, if that? Ned and I are sitting here shrugging and feeling very, very nervous about the job. It is so hard to be a grown-up, sometimes, and look into these things and know all you have to know.

I think I would rather be a kid than this construction-managing, food-shopping, meal-preparing, clothing-washing adult that I now am. As a kid, you don’t have to worry about sewage, except your own. And it provides endless material for jokes, which every one around you gets.

I got so deep into my dance class yesterday (Baby Bellies) that I felt like a kid, too. I was actually disappointed when the first mom showed up. This time, I was so much with them, so in-the-moment, that I felt like one of them, in some ways, or like a neato older sister in others. They were asking to do this or that, and for me to show them. They actually told me how they like to learn, which is to just try doing the stuff as I do it, watching me. So two of them asked to learn a dance routine — can you believe it, that is ambitious stuff! — and so I tried to make one up, using only moves I had taught them. I put on my trusty Misirlou, the George Abdo version, and just felt the music tell me what to do. Knowing the piece so well, I could warn them of tempo changes ahead of time, and of what I would do next. At one point I saw, out of the corner of my eye, four flashes of colored veil: gold, pink, green, and lavender, all swirling at the same time, the same direction. Oh my God, I thought, they are doing it. They are dancing. They get it.

Monday, December 3, 2007

Creature Comforts

Creature Comforts — because it snowed last night and so it now feels like comfort time.
1) The soft, fluffy white peds I took from my Mom’s drawer. Good to sleep in, too.
2) 3-carb hot chocollate from Swiss Miss. The first tastes of wet, lumpy powder taste really good. This is not a brown crayon dipped in water.
3) Candles in my fireplace. Less hassle than lighting a fire, little flames can cheer, too.
4) Falling asleep against Ned on the couch while we watch an Old Simpson’s episode on the Tivo with Ben; I can hear his laughter, low and rumbling, against my ear.
5) A week of nothing nudgy planned but meeting friends, writing, holiday shopping, making Chanukah nights special.
6) Decorating for Chanukah: get out the choo-choo train menorah, the cheap brass one we bought at the Penn Bookstore when we were first married, the ceramic one little Max made where the holes are so tiny we use birthday candles, the silver one I splurged on, the lightbulb one like Mom and Dad’s that goes in the front window. Plug in all my Casbah lights leftover from my birthday party. Drape flashy paper dreidl from my porch light.
7) Making latkes from scratch. Must buy taters today. And applesauce, that’s how Max likes them.
8) Assembling wrapping paper, tape, scissors, and presents and having a wrap session, the excitement over the piles growing.
9) The feeling of having finished the raking, (yesterday!) in time for the first snow (last night!)
10) The look of the first snow from within a warm house.

Sunday, December 2, 2007

Mind-boggling Cuteness

Today was haircut day in the Batchelder-Senator household! (Except for me, and Beastie’s was cut last week. Mine is growing long for spinning in bellydance.)

Let Your Flap Flag Fly

What’s flap got to do, got to do with it?
What’s flap but a single-handed motion?
–Tina Turner and me

A friend put a comment on my blog asking if she should ask her ABA therapist to ease up on the anti-flapping. My answer is a resounding, “Yes!”

My question right now is, “What’s Flap Got to Do With It?” Why should anyone care so much about what someone else is doing, if no pain or illegal matters are involved? Why can’t we all just stay focused on what we need to do and leave the flappers alone? Or the sillytalkers or the rockers and spinners? Once again, Voltaire had it right. Our own gardens, man, our own gardens. Get weeding and stop looking at my flapping boy.

This reminds me of the Standards Movement in education. The Standards Folks believe basically that if my Natty boy fulfills his I.E.P., works long years to understand and master typing, placing a phone call, alphabetizing, conversation, basic math, purchasing, and then Nat gets a diploma — the same diploma as your typically-developing, A student — then that diploma is de-valued. Even if it took Nat much, much, more effort and brainpower to get from his own Point A to Point B then it took for A. Student to get from his 88% to his 99%. Whose achievements were greater? Who decides that A. Student’s 99% in Calculus and American History are so much more important to the World Out There, then Nat learning how to exist mostly on his own as an adult? What is an education for, really? Is it to learn more science and math than the Chinese, or is it to create a generation of adults who can reason, think things through, act safe in the world, find a job, and contribute their little bit to society?

Diplomas should measure mastery and effort, but with respect to each individual’s abilities. My Nat’s diploma does not devalue A. Student’s. But most of my state Board of Ed believe it does and Nat will be denied a bona fide diploma when he graduates, or actually, when he leaves school at 22. Technically in Massachusetts Nat will not “graduate;” he will finish school with a nice ceremony. This is true in most of the country as well. Standardized, exit exams decide graduation, rather than years of effort and IEPs. The Standards Folks have taken the stuffing out of the primacy of the IEP. What kind of standard is that?

The ABA-ists apply their standard of “normal behavior,” or “appropriate behavior” to autistic people. Sure, we NTs all know what is normal and what is not. Or do we? There I go picking at my forehead zit again and again, twirling my hair, jouncing my knees under the table, singing as I cook. There Ned goes endlessly tapping his fingers or clicking his teeth to a song. There goes Beastie humming a Mario tune. There goes my mom clearing her throat while she reads. Or Dad with his perpetually raised eyebrows. There you go surreptitiously picking your nose, especially when you are driving.

Nat does his thing, gloriously un-self-consciously. Vibrant, voracious, sillytalk and fastwalking back and forth. Who the F cares? He’s getting excercise, he’s declaring his happiness.

Is it that we NTs are secretly jealous of the Auties who just freely let their flap flag fly?

Saturday, December 1, 2007

We Must Walk(er) the Walk

They will beat their swords into market shares and their spears into social storybooks. Nation will not take up sword against nation, nor will they train for war anymore. — Me, and Isaiah 2:4 and Micah

What is going to happen to this country, to this world, if the numbers of autism keep jumping? Or, if science and medical technology allow people to live, who otherwise would have died in utero or from having been born prematurely? We all tear our hair out and cry to the heavens about the problem.

But — are the numbers the problem? Or is it just that we currently don’t have the resources to accommodate these people? And, if enough people have these problems, isn’t there the possibility that it will force society to change its values and find that money? If society had the money to take care of pain, to educate, to hire supportive staff, to house, to accommodate and employ — would it actually matter so much that some people could not sit quietly in movie theatres, stop from flapping in restaurants or playgrounds, have tantrums in supermarkets? I am talking about if there were enough money. The war in Iraq is costing around $720 million daily. Most people feel this war should never have happened in the first place. Even of those who do, many feel it is now a failed venture and the troops should be brought home. With so many other places on fire in the world, we cannot justify being only in Iraq, nor can we propose going into all the other places. We have to tend to our own gardens now.

If we tended to our own gardens, we would have enough money for the people in need in this country.

If we could build sufficient schools with enough space for small, separate classrooms when needed, but also with enough money to train regular education staff to include and mainstream wherever we could — and yet kept those classes small so that staff could be effective and everyone within could learn in their own style — we would not have a problem of having too many special needs kids. The problem results from not enough money, from mismanaged priorities — the Iraqi war is but one example — not from the people themselves with the issues.

If you think about it, it is actually a good thing, the changing face of our populations, the addition of multiple disabilities, of autism spectrum thinkers, of Down Syndrome classmates and friends, of kids with CP trying to speak and kids without CP learning to understand them. Our children are now used to kids flapping, working with aides, being pulled out for math support, using wheelchairs in elevators in schoolbuildings. Our kids are learning that bullying is wrong, (even if they still do it a little, you have to start somewhere). We have anti-bullying curricula now. That is lightyears better than in my day, when poor developmentally delayed Clayton came into the classroom and peed on the floor and we just laughed and no one said anything, no one explained, and I never got to know him. I was afraid and looked away.

The shifting ingredients of society, now in the classrooms due to the miracle of modern medicine, soon to be in neighborhoods and in the workforce, is a brilliantly beautiful manifestation of the wonders of life. Life was first formed from random mutations of cells and evolution. Most of us are now two-legged, sighted, reasoning, speaking. But some of us are not. Big Fucking Deal. We are all here, and we all must be brought to the table. Our children are learning that, and they are getting over it and incorporating these experiences into their daily lives.

This program was sent to me by a reader (thanks, Susan B!), and you will notice that the father talks about the boy’s hard life. It got me wondering, would Walker’s life be this hard, if there were no stigmas to overcome, no dismissals on face value? If no one looked away from Walker, but actually embraced him so that his father and mother could get a break?

If the community fearlessly embraced their “disabled,” unafraid because they were used to difference and because there was enough money to provide training and understanding, would Walker’s life and his father’s life be less isolated and sad? Perhaps it is the constant burden of feeling that difference = wrong, emphasized by the penny-pinching mentality of school systems, caused by lack of funds from the government, that contribute in a huge way to the disabled and their families feeling like outsiders, like grateful beggars.

Am I a dreamer? Maybe. But we all know, governments are voted out, priorities shift, laws are signed into being, and society changes. We can imagine a better world because we actually witness it sometimes in our kids’ lives. We don’t have to settle for shitty conditions. We can do better than this; in fact, sometimes, in our children’s classrooms, we already do.


Oooh, my sacroiliac…
–Kaa the Snake, Disney’s “The Jungle Book”

You wouldn’t think that mere light touch would do much of anything for a person with high anxiety, and actually, I’m not sure that it does. Nevertheless, Ned and I brought Nat to his first session of Craniosacral therapy today at my gym’s spa, and we sat with him while Kate worked on him.

I chose to do this because I have had several excellent massages with Kate. I find her kind, warm, and with just the right degree of pressure. I truly relax with her, and for me, that is a wonder. I was idly checking her bio on my gym’s homepage and I saw that she practices CST. I knew that craniosacral is an alternative, unproven therapy for autism, and of course I thought of Nat, although the thing is, what does it mean to be a “therapy for autism?” Are you trying to address autism, or are you trying to somehow help the autistic person? And what does that mean?

In my mind, therapy for Nat would be about either making his body more effective in some way, or making him feel good in some way. CST could possibly do both, or nothing. But I figured there would be no harm done in having Nat experience something new like massage. Once he has the context of a new thing, he can enjoy it and I believe he will enjoy getting massages; perhaps with Kate.

First Kate worked on me (yay! did that feel good!) while Nat watched, so that he would know what to expect. She gently pulled at my feet for a while and then went to my neck and head and temples, gently stroking or resting her hands there. She finished with these mild tugs on my ears. It was delightful.

Then Nat eagerly got up on the table, laying down face up, and she touched his feet for a while, and then moved over to his neck and shoulders. Nat was smiling gently for some of it, and eyes closed and mouth neutral for the rest of it. He sometimes stared at the ceiling, fuzzy-eyed, too.

No sillytalk for the entire session. That is the one big observation I made. He was definitely not asleep, either. He answered her questions each time — about his comfort level — and lay still. Only once did his hand move in a vague flap, and he pronounced one brief syllable, but that was it. Not at all sure what to make of that, except that he was probably uber-relaxed.

I suppose utter relaxation is what I was hoping to get out it for him. As I gazed at him lying there so still, so serene, I felt my mind moving back in time, to Baby Nat and how he would laugh when I tried to lay down with him for a nap. He kept lifting up his head, looking at me with my eyes closed, laughing as if I were playing a game with him. I remember I was so tired, and so wishing to sleep, and yet his delighted little face right near mine was so adorable that I didn’t really mind being awake.

Watching Nat lying on the soft table in the massage room, thinking about how much has happened, an odd thing happened. For perhaps the first time ever, my remembering in that way did not make me feel sad. I kept looking at his sleepy, bearded face and only thinking, “Do you feel good, Nat? Is this different? Is this okay?” I only wanted for him to feel happy, calm, relaxed, at peace: no other feelings. And the funny thing is, that is what I was feeling.

Memory Canal

Just came across this splash from another life.

Tabblo: Way Back, But Still the Same

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