Pray Sir, Whose Dog are You?

What popped into my head just before I sat down  to blog tonight was the inscription Alexander Pope wrote for the collar of George II's little dog:

I am his majesty's dog at Kew.
Pray, Sir, whose dog are you?

I love the satire of the 1% here (get it? The folks fondling this little dog and reading its collar were courtiers, the King's inner circle, somewhat like the 1% of 2012). But really, the reason this verse jumped into my head tonight was not because I crossed paths with some heartless billionaire (not bloody likely, mates).

It was the second line, out of context, that spoke to me. Except I substituted the word "boy" for dog. As in, "Who the hell is this man-child sitting in the back seat of my car. Hey, Kid! Have we met?"

I mentioned in a recent post that puberty is changing our playing field. Yup. And my big question is, how will puberty affect Benjy's (fragile) mental health? I'm afraid we are getting an inkling of the answer.

Yesterday we began a vacation (I know, unbelievable) with my best friend and her son, who happens to be Ben's best friend. We did this once before, about three years ago, when Ben was in the throes of PTSD (the result of a scary tire blowout on the Massachusetts Turnpike the year before. Ben would not ride on any highway or large road for about two and a half years. Major panic attacks would ensue if we tried).

That last vacation was really tough; two days in, Benjy could only think with deep agitation about the impending ride home. It was not a fun time.

But this summer we though we'd try again, This time the road trip was about as long as the last (6 hours) but we'd all be riding together in one van.

I should have known how it was going to shake out when, on Thursday night, Ben did not sleep much. Then, when the social worker at school called me on Friday to say he'd needed to sleep most of the day, citing his anxiety about the trip, it should have been confirmed: this trip was going to be a problem. But last night we drove to A and M's house in Connecticut, where we would sleep over before driving to the Jersey Shore this morning. And last night Benjy simply did not sleep. I learned this when I woke at six this morning and found him in the living room using my laptop. He told me he'd been up since five, but when A woke she informed me he'd been up all night -- and kept her up -- watching YouTube videos and shooting a toy metal gun belonging to M.

Click, click, all night long, right next to A's bedroom. I'm surprised A. didn't kick the whole lot of us out to our car.

I gave Ben an Ativan an hour before we left, but Readers, let me just say that Ativan does NOT avert psychiatric meltdown. It may blunt, but it does not prevent.

The whole six hours, he made annoying noises, uttered his creepily dark ideas, was insolent and angry. At times he had an odd, displaced look about him. It's a look we hadn't seen in a long time.

I could say more about the way Benjy was today, but it makes me too sad. Suffice it to say that I did not completely recognize him. Who he was, was a variation of whom he's been in past, dysregulated days -- but different, too. Angrier, and more insolent. Resistant. He scared me a little.

And one of the worst things of all is that my dear friend, who has always cared for Ben, and who has ALWAYS been there for me on this difficult journey, is not getting it. I can see in her eyes that she doesn't like him right now, and that she doesn't believe he's anything but a badly behaved kid.

That, as any parent of a kid with autism and/or mental illness will tell you, is a simple reality. People look at us like we are the worst parents ever, like our kids are losers, or bad people. And that hurts something fierce.

So I did the only thing I could: I doped him up on extra melatonin and his usual Clonidine so he will sleep tonight, and crossed my fingers that tomorrow will be better.

Maybe A. was just tired. And maybe Benjy is tired, too.

God knows I am. I'm exhausted.

Where You're Coming From

Readers of this blog hail from all over the world. That, my friends, is SO COOL. Such a grand way of being connected!

Here's where you all came from over the past week:

United States
India
Russia
United Kingdom
Malaysia
Philippines
Sweden
Ukraine
Australia
Estonia Every week it changes a little (but my largest readership is always American). Every week I check, because it is such an honor to have readers from Estonia and Sweden and the Ukraine and EVERY OTHER country on that list. Even if I don't know exactly where your country is, geographically speaking. Especially if I don't. Thanks as always, Readers, for dropping by. Wot larks! to quote my all-time favorite blacksmith, Joe Gargery.** **Great Expectations. You MUST read it. You can wait till tomorrow to start. There will be a quiz on this blog sometime soon. Hey -- anyone else have a favorite blacksmith? (*pandering for comments*)

I am FLUMMOXED

I would think that after 8, 10, 12 years on the job -- any kind of job -- most people know how to do it. Wouldn't you?

I mean, after a couple months helping my Dad put braces on kids -- that was my summer high school job, "Orthodontic Chair-Side Assistant and Occasional Front-Desk Chair Warmer -- I pretty much had it down. Sure, if some twelve year old had thrown up all over the place while getting an impression done (a classmate of mine once DID throw up in my father's chair but thankfully I was not present) I'd have shrieked and run away, but overall I got the suction, the water sprayer, the bibbing of patients and the handing over of instruments. It was not brain surgery.

And after a month of selling well-heeled women's clothing clothing for well-heeled women* at The Talbot's in downtown Boston -- to impatient businessmen who needed birthday presents for their wives and were willing to devote four minutes and a hundred bucks to the process -- I more or less figured out the cash register and the fake smile. (I did not EVER perfect the folding-and-inserting-in-bag-while-impatient-dude-taps-foot-and-frowns part of the job, however.)

And after, oh, I don't know, three or four years of teaching college English I was pretty good at it. Of course, there were always new courses and new material to master well enough that I remained smarter than my students (this is harder to pull off with graduate students) but overall I learned how to do that job and do it well.

So why the hell haven't I figured out how to be a parent? Because it's going on fifteen years and once again I am simply flummoxed.

Okay, I'm exaggerating. It's only EIGHT years since I've been parent to an off-kilter child (Benjy's mental health issues began at age four). But still.

EIGHT YEARS? I hear you thinking. AND YOU STILL DON'T GET IT?

Well, no. The thing is, I thought Benjy was doing SOOO well. He seemed happy enough, had made some new friends, was (mostly) making it to school. Then there was that dysregulated day in Connecticut I recently blogged about. And then Saskia told me he "doesn't seem right." And then -- because I am impressively inattentive these days -- I realized, retrospectively, that he's been  kind of downcast, and withdrawn, and unsmiling for quite a while. And now, once again, he is begging me to keep him home from school (the Joy School runs a summer program that is school, not camp).

The past two weeks it's been a struggle to get him to go. Now, I can't say I blame him. Go to school in the summer? that's not fair!

But he can't manage camp, and if he doesn't go to school he will literally sit in front of his computer ALL DAY LONG. And if I complain and ask him to do something else he will tell me, bitterly, that there is NOTHING else to do and his life is empty. Then he will suggest some impossibly expensive thing, like buying electronic stuff or inviting a friend to the aquarium, or some impossibly inadvisable thing, like finding a gun shop where he can fondle the Glocks.

So my question is: what do I do? Does this depression mean he needs a med change? More therapy? (We've taken a summer hiatus because he was simply refusing to go.) Should I be calling his psychiatrist or is that over-reacting? I do not know. If he would only talk to me maybe I could figure it out. But he is resolutely close-mouthed. He resists all of my questions, even benign ones. His affect is flat, his face unreadable, except for the sadness there. I cannot reach my boy, and I am at a loss for what to do.

Inevitably, in life, things cycle back. We might think we're done with this or that conflict, but we almost certainly are not. The repressed always returns, as does winter darkness and the full moon. Often there is comfort in these cycles -- thank GOODNESS the days will get longer again in spring, and stone fruits will come back just when we've forgotten their particular species of firm sweetness.

But this return, the return of my off-kilter boy, I find unnerving. And even though depression and anxiety have always waxed and waned around here, they throw me for a loop when they re-emerge.

So here we are again, and not for the last time I am flying by the seat of my pants, as Lars would say.

* English grammar was obviously not on my graduate school curriculum. My German grammar is far, far worse.

Like Eating?

If you do you'll like this:

http://germanjewishcuisine.com

My friends Gaby Rossmer and Sonya Gropman have started this blog about German-Jewish food -- including recipes. I remember eating the fried potatoes with caraway seeds myself, at my grandma's Washington Heights apartment many years ago.

I'm feeling nostalgic!

It's a beautiful blog. I think you'll like it -- even if you have no ties to German-Jewishness or Washington Heights. Enjoy!

What Music Does

My Dad sent me this video this morning and it made me weep. Literally. To see all those beautiful people, bound by beautiful music, flushed with joy and the pleasure of this unexpected gift. In this age of suffering and division, we need more music, to heal us and bring us together.

Watch it and and start your day with a smile:

In Which I Learn to Accept Benjy's Books

What's a mother to do when her twelve-year-old computer addict asks her to drop by the Barnes and Noble on the other side on Route 9 and by a book?

This mother swerved into the right lane u-turn exit, narrowly avoiding a grandma in a golden Toyota Corolla (note to self: next time CHECK YOUR MIRROR, even if giddy with excitement). Then she backtracked a quarter mile to the B&N in which Benjy's reading habit would shortly be born.

Yeah!

So, we went into the store and Ben IMMEDIATELY wandered into the aisle with the books entitled "Major Battles of WWII," and "WWII Tanks," and  "The Encyclopedia of Guns and Machine Guns."

That last one scared the bejesus out of me.

He picked it up. Gazed lovingly at the firearms on the cover. Slowly opened it and scanned the first few pages. Savored the damned thing like a steaming cup of Ovaltine in mid-winter.

He glanced at my frowning face.

"Mom?"

"No." I would be damned if I was going to stoke this obsession.

"Why not? It's an encyclopedia. It's a HISTORY OF MODERN GUNS."

"No, no, no. Besides, don't you have a library book that looks just like that somewhere in your room, under a pile of laundry or something?"

"That's different. It's not an encyclopedia."

"Oh," I said. "And have you even read it?"

"Of COURSE I have. Several times."

"Well, I am NOT going to spend my money on a book like this. How about a nice novel? A mystery or fantasy or something." (I have given up on him reading "All Creatures Great and Small," much to my chagrin.)

Benjy scowled. "How about this history of WWII, then?"

This made me uncomfortable. He could be reading about bovine bowel surgery in rural England but instead he wanted to look at pictures from Auschwitz? Good God!

"Ben," I said, "you are freaking me out. Go look at the novels."

Of course, there were no novels that quite met his specifications. So he asked for the computer books.

We rode the escalator to the second floor and perused the mind-numbingly boring computer science line-up, but he wasn't enticed by "Excel for Dummies." Thank God!

After a few minutes browsing the field guides to North American birds, and a few rebuffed suggestions on my part of interesting-looking options, he found his mother-lode.

A whole rack of survivalist literature, Such as, "Surviving Hell on Earth," and A Survivalist's Guide to Everything." He had struck gold.

Shit, I thought, remembering that only a year or two ago he was OBSESSED with and TERRIFIED by the end of the world, which was coming in 2012.

"I want this, Mom," he said, handing me the Survivalist's Guide.

I hemmed and hawed. "Uh," I said helplessly, as he gazed imploringly in my eyes. He did watch Bear Grylls, the survivalist, on TV. He'd seen Bear eat and drink unmentionable things, build shelter and weapons from who knows what. How different was this?

And then I had a rogue thought: Maybe it's okay that Benjy doesn't like to read novels. That his interests are WAY different than Lars's and Saskia's and mine. Maybe that even makes him an interesting and independent kind of guy!

Now, I'm not saying I approve of all these subjects of Ben's obsessive interest. But Ben is not me. And reading is reading. And at some point I have to let him follow his own path.

"Okay, Ben," I said. "Let's go." But this is an expensive book. You'll have to do quite a few loads of laundry to earn it."

"I will," he agreed, clutching the treasure to his chest.

I apologized to him on the way home, for not understanding. It's reading, after all, I told him. But someday I want you to try "All Creatures Great and Small --  will you?"

"Sure," he said, but he hadn't really heard me. He was deep into Surviving.

So I put on NPR and listened to stories about financial and ecological and political disaster. Maybe 2012 WILL see the end of the world as we know it. If it does, Benjy will be ready.

Smart Advocacy for Special Needs Children

Because I think many of you, Readers, have some connection to the world of special education, I wanted to repost this wonderful piece by Benjy's truly exceptional educational advocate, Laurel Collins. We've learned a lot from Laurel -- and after you read this, you'll be a little smarter, too! (I found the Cadillac vs. Chevy analogy particularly illuminating.)

Laurel's advocacy website can be found at www. laurelcollins.wordpress.com


As a parent, it is likely you know what your child needs defined in their IEP. What is more difficult is coming up with the program, placement, or related service to deliver that what is contained in that definition. Too often, parents are given “one-size-fits-all” options for programming, never knowing what else is out there. School districts typically have a strand (ie: learning center/learning disabilities, autism, life skills) in mind well before your child’s IEP team convenes. How do you ever know for certain what is available, even within your school district? And, even if you do, how can you as a parent be certain it will meet your child’s unique needs? (The saying, “if you’ve met one child with autism, you have met just one child with autism” comes to mind).

Having entered these murky waters both as a parent and a professional working with other families, I hold two schools of thought which might seem contradictory.
The first is simple. Trust your gut. If something seems wrong (too intensive, perhaps placing your child with students with different needs, or not enough), it probably is worth questioning. However, be reminded of the following. In the context of providing a Free Appropriate Public Education (also known as a FAPE) the district is required to provide the special education services that a child needs in order to make effective progress.

In simpler terms, think of the Cadillac vs. Chevrolet analogy. The law requires that each child receive an education comparable to a “serviceable” Chevrolet, not a high-end Cadillac. What this means in terms of services: You shouldn’t ask the team to provide what’s best for your child (the Cadillac), but rather frame all special education requests in terms of what your child needs (the Chevrolet).

As parents, the second thing we rely on is our “experts”. These are the evaluators we hire and pay for (either through health insurance or privately) to evaluate our kids independent of the school district. If your vision for your child’s services and program are even a little at odds with what your school team recommends, you *have* to have solid evidence and data to back up your requests. Is it fair to place a financial burden on already stressed out families trying to advocate for their children with identified disabilities? No. Do families who can afford to hire people like me, or attorneys, have a better chance of success in negotiating (because, in the end, the IEP process is simply about negotiation) what program and services their kids receive? Absolutely. Are either of the above answers fair? Of course not.

As an educational advocate, much of what I do is educate families about programming and services which could meet the needs of their child. Because advocates tend to be retained based on their work and success in certain districts, we typically know the programs actually available versus the limited programs offered. There are not supposed to be “one-size-fits-all” options for programs or even related services like transportation or Extended School Year, yet there are and most parents don’t know they even had options. Nearly every parent that calls me doesn’t know they have a right to partially reject an IEP using the terminology “the omission of _____”.

As parents, we get tongue-tied and emotional and try to appeal to the humanity of the team members. Sometimes, with the right team, focused on the child, this works. Just as often, it doesn’t. When you try to assert your right to reject something, or ask for something different, you are branded the “difficult mom/dad”. That’s why parents hire advocates. (In actuality, that’s why smart advocates also hire advocates or attorneys when things aren’t working). It is my greatest wish that all school district administrators realize parents do things they think in their hearts are right for their kids, because they have their children’s best interests at the forefront. For every gifted, kind, and human team chairperson I work with, there is an unreasonable or clueless one.

As a mom and an educational advocate, I suggest you trust your gut and trust your experts, weighing both with the valuable opinions of your child’s team. Don’t be afraid to advocate for something different. You are your child’s voice and it is your responsibility to act to protect their ability to access what is reasonable and appropriate. And call an advocate, actually call a few and then call their references, if you get to the point where you need another set of eyes and another voice to join your own.

I do this because I care deeply about kids and because people (two phenomenal advocates) cared about my kids and what they needed long before I did this professionally. They helped me find my voice (which was never quiet, but was often overwhelmed and based only in emotion and not in data).

Here’s hoping parents everywhere get the support they need to be exceptional advocates for their kids. I maintain the above-referenced question is not a fair one to ask a mom or a dad just trying to see their child be effectively educated. We’re parents who love our kids and whose hearts soar when they succeed and break when they fall. We’re not the enemy.

Search Keywords

Here's how people landed at The Striped Nickel this week:

Search Keywords

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how to know if hes older than you think   "x-rated sweet nothings"?? Yikes!

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Commenting on this Blog

Dear Readers,

A faithful follower of this blog reports that she can NEVER leave a comment on it. There seems to be some sort of blogger-glitch afoot.

Would you do me a favor? If you have tried to comment and not had success, would you shoot me an email at anna.delaunay@earthlink.net and let me know?

Now, it may be that my sparkling prose simply does not elicit much reader response. But in case people like the aforementioned Follower are trying and not having any luck, I would like to take it up with the good folks at Blogger Support.

It is always thrilling to hear from blog readers. So please, when you drop by, say hello!

Or the Hellacious Hound will sit up on his throne and SNARL.

Overheard Today, In Our Minivan

Benjy: You know my new favorite animal?

Me: Uh...louse?

Benjy (scornfully): No, Mom. Although those things are pretty interesting.

Me: Buzzard?

Benjy: *thoughtful silence*.

Me: Well?

Benjy: A buzzard is a bird, which is definitely in its favor. But -- no.

Me: I dunno, I give up.

Benjy: The alligator. Don't you just love those guys?

Me (laughing): Definitely not. They'd love to take a bite out of you, however.

Benjy (huffily): Well, I hope you RESPECT them. As animals.

Me: I sure do.

Benjy: You know, I may even look like one. What with my big teeth.

Me: Well, alligators ARE handsome animals. But you are handsomer.

Benjy: *beam*