Susan Senator

All I’m askin’
Is for a little respect in your group home, yeah
In your group home
–Aretha and me

How do I get an online petition started to close down the Judge Rotenberg Center which I can then bring to my Governor. I can’t believe that the $%^& Boston Globe has an editorial today saying that “there is a role for aversive therapy if it is practiced with great restraint and respect.” Respect? How does that work, exactly? “Oh, dear autistic student, with the ‘self-destructive and violent’ behavior: forgive me for what I am about to do to you in the name of teaching you how to be calm and peaceful.”

That is because — with all due restraint and respect — The Globe Editorial page has its head up its ass. Instead of condemning electric shock for being outmoded and barbaric, and calling for the JRC to be closed, The Globe thinks it knows enough to merely recommend — in mealy-mouthed, spineless, we-don’t-know-what-it’s-like- we’re-not-the-experts-or-parents-dealing-with-these-monsters, and let’s-be-moderate-and-not-throw-the-baby-out-with-the-bathwater fashion — that the JRC be investigated and monitored in an “ongoing and intensive” manner.

Sure, investigate. But close it down in the meantime. Do we really need another team of “experts” to tell us that this is wrong?

I know what it’s like. Okay? I know. Read the book. Read the blog. Ask me. Look at my hands, my scars.

You don’t torture to teach a lesson. You just don’t. Case closed.

My heart leaps up
when I behold
My bright and sunny boy
So was it when his life began
So is it now that he’s a man
So be it — for I shall grow old
The love of mother for her son
Especially such a needy one!
Of all the things he wondered at
Old Wordsworth never imagined Nat.

I’m tired of the excuses everybody uses
He’s your kid, do as you see fit.
But get this through that I don’t approve of what you did —
–Natalie Merchant

The Judge Rotenberg Center must be closed. It should never have remained open after the Department of Mental Retardation stopped referring clients there because of its unorthodox treatments. But the Behavioral Research Institute, (now renamed the JRC) took the DMR to court and won.

So now the is JRC is under more critical scrutiny for a horrible sequence of events that left two teenagers with burns on their skin.

“It was a perfect storm of things that went wrong that night,” Ernest Corrigan, a spokesman for the Center told the Boston Gl0be.

I would say that you always take the weather with you. Two teenage boys were tortured by the staff at their JRC group home, because of a prank call that ordered this punishment. The Globe keeps talking about how “no IEPs were checked” before this heinous, barbaric torment began (77 shocks administered to one of the boys, 29 to the other). Implying that if it had been on the IEP, it would have beeon okay?

I’d say that JRC students’ IEPs are checked alright — checked at the door. Along with their civil rights. Is there a justification on earth, a behavior problem so thorny and mystifying, that torture would ever be the solution? Whatever happened to our Constitutional right to be protected against “cruel and unusual punishment?” Does that not extend to the severely autistic or attention deficient?

What I believe is that the people who refer to the JRC and the people who believe in the JRC methods are actually not acting in their clients’ best interests. Not at all. In fact, I would go as far to say that they have all given up on their kids. To say that nothing else “works.” What are the goals? To simply get rid of an undesirable behavior, or to help and teach someone? To understand what is causing the undesirable behavior, or to merely stamp it out?

Doctors, therapists, educators, and parents are supposed to investigate and thoroughly try to analyze difficult behaviors. Bring in more thinkers, really troubleshoot the problem.

How in the world can hurting another human being be the way to teach?

Please tell me how it is that Massachusetts, on of the most cutting-edge states in terms of educational progress, can still allow a place like the Judge Rotenberg Center to exist? What is the justification for a school that uses electroshock therapy as well as food deprivation and other forms of punishment, in this day and age? The Boston Globe thinks they know. But the Boston Globe has often gotten things wrong when they tried to take on Special Education. I am remembering, of course, former Globe reporter Kate Zernike’s horrible attack on Special Education several years back, which coincided with the State House gutting Chapter 766, the Massachusetts Special Education Law.

This time, the justification for severity, i.e., aversive therapy, is the children themselves. For they have autism, MR, ADD. Ah, so that is supposed to explain it for us all. We’ve seen the Autism Speaks film, after all. We’ve seen the Ransom Notes. We’ve watched St. Elsewhere, and seen the Wild Child depicted again and again. And, well, the parents and the schools who referred the children to the Judge Rotenberg Center just could not handle the kids. So they get placed in a school that uses electric shock to the skin and other forms of painful punishment, in order to “treat” their challenging behaviors.

Newsflash to the Globe and the JRC: if a child is gouging at his own eyes, biting himself, banging his head, as some of these JRC students were reported as doing, there is a reason for their behavior. This is a person, first and foremost, so you can be sure that people do not hurt and scream for no reason. But — a person who cannot communicate in the typical manners, a person with over-the-top sensory issues, a person who might have chronic stomach pain from an intestinal disorder that was undiagnosed because the person has autism — those people might have to scream to relieve their frustration and make their own pain stop. The specialists should be doing everything they can to find out why they are doing what they are doing, just as we do with cholicky babies. We don’t hurt them or even let them cry for long. We all know that physical punishment is wrong, inhumane, and does not even work. And yet, many autism specialists throw up their hands and say, “use behavioral methods,” or “Do what works.” Is the behavior something that calls for behavioral strategies, or is it something else? And is there ever a justification for aversive therapy? I cannot imagine there would be.

There is no justification. There is always a way to connect and help. Teachers have to stop and regroup. They have to keep going in and trying. They have to Do No Harm. That slogan doesn’t change just because one is autistic.

I thought of this while I was digging in a frenzy through my bag for a piece of gum…

(Sung to the tune of Eric Clapton’s Old Love)

I can feel your tiny body
When I’m rooting through my bag
There’s too much craving going on
And my metabolism’s a drag

And it’s making me so hungry
To know that your mint will always burn
I ain’t never gonna stop blowing bubbles
No, now, always yearn, always yearn

For Old gum —
even tho I’m grown
Old gum, old gum
Tastes like a stone

I can feel your sweetness
Though I know it’s not real
Just an illusion
Caused by Splenda and orange peel

And it makes me so hungry
I love that your mint, it always burns
When will I stop blowing bubbles
Will I always yearn?

For Old gum
Old gum —
[AWESOME guitar solo — watch towards the end of it where he gets so into it he is humming to himself, totally lost in the music. At the end of the piece, your gum is probably dead, so spit it out and get a delicious fresh, bouncy piece]

Oh, this guy still does it for me, probably because he looks like a brown-haired Ned… that smile! Oh, be still, my heart.

Yay! We went out to a Christmas party without hiring a sitter! We told Nat in advance and drew up a new calendar. We left him with a Disney Sing-Along, and then he was going to watch The Simpsons with Ben and Max. I told him exactly when we would be back (in time for giving him his pills, before bedtime) and where we would be.

He wasn’t anxious! So we had a little date time with Max in charge, and it was OKAY!!!

I feel years younger, being able to do this once more. We have not left Max in charge since last May, when Nat’s really anxious time began. I know, I know, one day at a time, but this day was certainly a pleasant surprise.

As I predicted, to combat the indoor fever of the snowstorm, (I hate the way Nat lies around on the couch, so my guilt motivates me to think of things he likes to do) there was baking today. I invented a new cookie: Gelt Cookies, made from dark chocolate gelt crumbled into Chipless Chocolate Chip Cookie Dough from Mom’s Big Book of Baking (thanks, Sha!). Our friend Matt gave us a bag of classy Belgian gelt, and I thought it would taste great in the cookies, instead of the more pedestrian tollhouse morsels. I was right! (There is a variant spelling for these cookies, “Guilt Cookies,” in case you are on a diet and you eat them. Even the broken ones have carbs/calories.) Smelling them = one carb.

See my Tabblo>

I’m typing through a haze of Afrin, Nyquil, not enough sleep, tickle-cough, and congested sinuses, so forgive any strangeness to this post. I am looking out my window at total white-out. Snow is pouring from the sky, blowing drifts against trees, houses, and cars. It is the Nor’ Easter they were all predicting, after all. By the time we went to bed predictions had been sliced down to 1-3 inches, or rain, as so often happens with these panic-casts. But while I was sleeping I thought I heard the roar of winter weather, and when I woke up I saw that it was alive and well.

It is no secret that I hate the winter and the cold. And yet, today, looking out at the vigorous storm, I do feel a sense of wonder similar to my springtime feeling, when I just can’t get over the activity of things that are not alive: the ground, the wind, the leaves. So much is going on out there, it feels a little exciting, like I’m anticipating a fun event.

Maybe there will be a fun event today. When it snows like this, all bets are off. All plans are suspended, while people bundle up and attempt to push back on their new workload of shoveling, by getting out there while it’s still coming down. That is Ned’s Sisyphean technique: to do several clearings of car, driveway, and walk, only to have it covered again. Mine is to wait until it is over and sunny, and then see what you’ve got and chip away at it. Sometimes my gamble pays off, and it turns to rain as is washed away. Sometimes I lose, and it becomes wet snow that is very heavy to shovel, and if I can’t finish it by the time the temperature drops, it freezes, and then you are stuck with whatever configuration you have carved — for weeks.

Ned gets the boys to shovel, especially Nat and Max. It’s amazing what they can get done, with that man-power! Nat loves to clear the cars. Max loves none of it, but does a good job. We baby Benji I guess, by not forcing him to go out every time. Today I think we’ll all go.

I wish that the fun activities that come to mind were not all food-based. I want to make the boys hot chocolate and pancakes, but the aroma kills me, trying to make do with my egg whites and low-fat cheese omelette. Or start gingerbread …. mmmmmmm I think that’s what we might do. I’ll just walk away when they start pinching off bits of it and eating it, and I’ll go get a piece of gum or slug down some heavily Splenda-d decaf. And think about how happy I’ll be on that beach in San Juan in just a few weeks.

I was once like you are now
and I know it isn’t easy
–Cat Stevens

I remember my very first parent support group, hosted by Greater Boston Association for Retarded Citizens and the Autism Support Center in Danvers. I braved snowstorms worse than last night’s to get to my meetings. Back then, Pre-Internet, the live, face-to-face parent support group was my lifeline. List-serve? Who knew? YahooGroup? Sounds like a bunch of whiskey-drinkin’ good ole’ boys. No, no, back then we had to trudge through three feet of snow uphill both ways to get our autism support.

One of the best things about that group was this dad, who had a teenage autistic son. When he spoke, I felt the ground shake with his hallowed vision. For this dad knew what The Future was like, and I needed to know that. I wanted to meet his kid, befriend him, and live in their house so that I would know what was maybe going to happen for Nat, what it would feel like, look like. I was starved for information that would lead me to Do Right By Nat, that big goal in the sky.

Some of my readers feel that way about me, because Nat is 18. I completely understand this feeling. Instead of worrying about will-he-ever-be-toilet-trained, or why-can’t-my-school-system-buy-a-clue, Ned and I are worrying about stuff like how’s-Nat-going-to-be-able-to-work, really work-if-he-occasionally-erupts-over-the-wrong-lights-being-on, or where-and-with-whom-is Nat-going-to-live? Or, how much money are we going to need for him, and how does that work? What is Social Security in terms of disability? How does he get it? Instead of wondering how much Nat will be able to talk, we now know: it is quirky and sometimes difficult to understand, sometimes not at all accurate. Which is in some ways what it was when he was four! But somehow, I understand now just how much he knows, and I am not worried in that respect.

Advice Tidbit#1: Development Happens. We also found that NOT ALL DEVELOPMENT OCCURS WITHIN THE FIRST THREE TO FIVE YEARS OF LIFE, Goddammit!!!!!! Sure, Early Intervention is a necessity, but if it doesn’t happen for your child by the time he is five, that doesn’t mean much! Nat developed a lot of his current language ability at 8. We really developed a great connection with him when he was 12.

Advice Tidbit #1a: Quit worrying about “normal.” To some mysterious degree, our kids are who they are. What they need is for us to educate them fully; to support their challenges; and then to accept them for exactly who they are. To love them with high expectations, but not with the aim of “making them normal.” (Whatever that is.)

Advice tidbit #2: Find out if there is money to prevent institutionalization in your state NOW and get on the waiting list. In our state, we have a special grant, the DOE-DMR grant, which provides a family with around $20,000 a year to pay for staff who can help prevent residential placement. We only applied for this grant two years ago, and we are still 40th on the waiting list. If your child is anything like Natty, you can almost always make the case that you are one step away from residential. But take notes, create paper evidence of your struggles at home. You never know when you will need it. School notebooks that go home are good sources of evidence of your child’s struggles.

Advice tidbit #3: Look beyond your school system for help. You should all be very familiar with your state agencies by now. You should know who your liaison is, and be in touch regularly, at least annually. You should be finding out if there is respite money or home support available for whatever diagnosis you can manage to apply to your child. If you don’t understand what they are telling you, ask again. You are not stupid; the system is.

Advice tidbit #4: Find the good organizations, the non-profits, that exist to help. I mean Special Olympics, Best Buddies, church and synagogue groups, community service programs at your local high school.

Advice tidbit #5: Parks and Recreation Departments have pretty good resources in terms of fun for kids. By law, they should be making reasonable accommodations for yours. If your Parks and Rec do not offer programs that are accommodating, complain. I believe it is IDEA, ADA, Title 1 or Title 9 that I am referring to. Perhaps your Special Education Director at your school department can create a liaison program offering activities for your kid. In our town, several parents got together and hired an outside agency to run a recreation program for kids like Nat, in partnership with the Parks and Rec.

Advice tidbit #6: Adolescence Happens. Grab them and hug them and smell them as much as you can while they’re little. While doing so, blank your mind and just feel the love, inhale it, bask in it. If all we get is tiny tender moments every day, rather than one big grand old time, then — take it from me — do not squander them. Being able to carry and embrace a child is a gift and IT DOESN’T LAST.

Take your time, think a lot.
Think of everything you’ve got. I will if you will!

While I was driving one foot per minute through the deep, white snowstorm to get Max from the high school, I started thinking, “Also got to make dinner, got to make dinner, got to…” and getting depressed. I was also worrying that it was literally taking me an hour to get to Max, and therefore, Nat would be in his little bus for many hours (his school is 25 mins. away usually). Would he be lulled by the slow, long drive, which is what happens most of the time, or would he get upset every time the driver put on her brakes? Would he hurt her and cause an accident? I should have gotten him early when I could have, but I needed the break.

I caught myself slipping down, and I had already been low all day. I had to put on the brakes myself. This is going to be my life — well, what am I going to do, leave? No. I love them. So this is my life. So I’m going to spend so much time in snow, in the car, and dealing with my sons’ troubles.

So I knew that I just had to find a way to be happier, moment-by-moment. I wondered what would help. Little things that are just within reach: Seeing everyone settled at home, for starters. A clean house. An idea for dinner.

Max was standing outside the Unified Arts building, a lone figure in all black. He slid in next to me, and barely said anything. “You’re mad at me because I made you come home today, right?” (Instead of hanging out with his friends.)
“Mmmm.”
I stroked his chin. He ducked into his coat. Mad at me. But I had him, safe.

Back home, Ben was oblivious to the storm, playing with the Wii. He got me to try the tennis and the baseball. I felt unhappy again, standing there, swinging idiotically towards the TV while the figure that looked like me onscreen missed ball after ball. “Do you like it, Mom?”
“Yeah,” I said, grimacing. “But I gotta stop soon,” because I’m feeling worried about Nat. Nat away, Nat here. Ned took over and I think Ben was happy with that.

I went to get the third or fourth load out of the dryer. I started making my bed with the warm, clean sheets.
“Nat’s here!” shouted Ned.

Okay, I thought. We’re all here, and safe.

I decided to make macaroni and cheese.

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.

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 Amazon.com.

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?

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.

From: susan@susansenator.com
Subject: Ransom Notes
Date: December 10, 2007 6:36:35 AM EST
To: Harold.Koplewicz@nyumc.org, Beth.Rowan@nyumc.org
Cc: laurie.ben-haim@bbdo.com, mrecanati@aol.com, john.osborn@bbdo.com, istatfeld@aol.com, Robert.grossman@nyumc.org

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.
http://susansenator.com/blog/2007/12/i-pick-you-up.html

Susan Senator

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!

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.

‘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.

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?

A Day that will live in Infamy.
–FDR

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.

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.

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…

Love,
me
ps. don’t tell him!