Jet-black hair, curled lips, and stupid questions

Today’s topic is, well…completely off-topic. Because it’s Elvis Week. And because, since I worked as a tour guide at Graceland all through high school and college, it’s a time of great nostalgia.  It’s part of what made me who I am, much more so than high school or college. Graceland was my “glory days,” my sorority, the setting for my coming-of-age story. And it’s not just me. Graceland had that effect on a lot of us. It was just one of those things that only those who were a part of it can really understand. But I’m going to see if I can paint a picture of why it was so special.

Blistering heat. 100% humidity. Saying the same thing (our spiels) over and over, for hours on end. Visitors from countries where people don’t bathe as often as we do here. People with cameras tripping over the “keep off the grass” signs as they trampled over the lawn to get a good picture of the house. Working extra days because there was nowhere else we’d rather be; we were afraid we’d miss out on something. And the tourists….oh my goodness, the tourists.

First, I guess I have to explain the difference between tourists and fans. Tourists are the ones who come because it’s what you do when you’re in Memphis. They ask ridiculous questions and make really obnoxious comments. The fans, on the other hand, are the ones who come for Elvis Week, when the tourists with any sense stay far away. For them, it’s a yearly pilgrimage. Most of us couldn’t wait for the fans to show up. They were respectful to Elvis and exceedingly polite to the tour guides, some even going so far as to bring us cough drops (you can get pretty hoarse talking in your loudest voice all day). Best of all, the fans could shut an obnoxious tourist down with one smart-a$% comment, something we couldn’t get away with (at least not more than once).

The fans were great, and we couldn’t wait for them to get there each August. But most of the story-telling fodder comes from the tourists. Particularly the really dumb questions and comments:

  • “Is that the suit Elvis was buried in?”
  • “Hey, that picture over there of Elvis and his father standing on stage. Was that taken before or after he died?”
  • “Does his airplane have a sunroof?”
  • “Why did you move the house? The last time I came, it was on the other side of the street.”
  • “He sure did get fat before he died.” (This one was usually delivered while the speaker was hoisting his or her belly up to rest it on the railing.)
  • “Round window on a bus? That’s pure sex, just pure sex.”

See what I mean? These are things that normal people just don’t encounter during their workday. We had to socialize (for the most part) with just each other, because no one else could relate to how we spent our days!

Thanks to Facebook, many of us are back in touch, and here are some of the stories we still laugh about:

  • When Elvis’s aunt (she lived in the house) would take her dog (Edmund) out, she had to walk through the Jungle Room. Most of the tour guides would hold back an incoming group so that she could get through in peace (because inevitably someone would scream out, “There’s the aunt!”). So one day a tourist loudly complained “What the hell are we waiting on?” Aunt Delta, who could be touch crotchety, leaned over the railing and said, “You’re waiting on me to get my a** out of here, you *&(^*(!” Loved that woman!
  • One time Edmund pooped in the Jungle Room. When asked about it, a tour guide who shall remain nameless told the tourist that it had been there since Elvis died because we weren’t allowed to change anything.
  • Having a male tour guide hide behind a piece of furniture to give the spiel while a female lip-synched.
  • Very embarrassing lessons on the importance of not reading tourists’ t-shirts while you’re giving your spiel. After saying the same thing so many times, your brain goes on automatic…and the strangest things pop out when your mind wanders. Like vulgar words on your audience’s clothing. (It was just as important not to day dream too much about the object of your affection, otherwise you might just say their name instead of Elvis’s. But I never did that. Never.)

And somethings were downright creepy:

  • In the winter, when there was often a long time between tour groups, the guides would all gather at the front door and run back to their stations when a van pulled up with a new group. I can’t tell you how many times we all dashed away because we heard a van that never materialized. And it wasn’t just one person hearing the van and telling everyone to go….we all did it.
  • The racquetball building was the last place Elvis was before he died. And let me tell you…I don’t know a single tour guide that would be in that building by themselves after dark. Everyone waited for their next tour group outside, no matter how cold it was. Because sometimes you heard footsteps upstairs, and there was no one there. Sometimes the disconnected phone rang. Once a floral arrangement given by a fan caught fire for no explicable reason. But mostly the place just gave us chills.
  • The summer of the 10th anniversary of Elvis’s death was a crazy time. Media from around world the descended on us. I was working in the PR department that summer as well as doing tours, and I remember the day a call came in from someone who claimed to be a psychic in touch with Elvis. He said that Elvis hated a picture of himself and Priscilla that was hanging just inside the front door and wanted it removed. Fast forward a couple of weeks….first tour of the day on the 10th anniversary of Elvis’s death, that picture fell off the wall, breaking the glass and slashing Priscilla’s face.

So here’s to the coolest job ever and all the great folks who enjoyed it with me. Now I’m going to crank up the Elvis music and see if I can find my collection of Elvis buttons the fans gave me over the years. And whatever happened to my “Elvis Tour ’88” t-shirt?

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Win, lose or draw?

Yesterday was The Challenging One’s IEP meeting. And I’m not quite sure how I feel about it.

For starters, let me give props to all of the participants. It was day 4 of the new “unified” school district. People from the two formerly separate districts met for the first time and tried to work through an exacting and legalistic process while juggling two different ways of doing things. Some of these folks have surely been worried about their jobs, what with all the layoffs that resulted from the merger. And yet everyone was polite, professional and helpful. Had you not watched the tortuous merger process in the news for the last two years, you’d never guess at all the angst going on behind the scenes.

The obstacle turned out to be the other thing I worried about: The Challenging One seems deceptively “normal” right now. He’s properly medicated for the first time since, well….ever. He seems happy, something I never thought I’d be able to say about this child. Even I have to admit that they child they’ve seen this week doesn’t even resemble the one in the neuropsych reports I submitted. The district psychologist noted that even a functional behavioral assessment doesn’t seem useful right now, because there are no behaviors to assess.

So we ended up with a few 504 accommodations. And I am riddled with ambivalence. On the one hand, nothing would make this mom happier than for The Challenging One to need no more support than the accommodations we’re putting in place now. And even I can see that he doesn’t seem to need anything else…at the moment. But I wake up every morning wondering if this is the day the miracle will vanish. He’s not cured. I guess you could say he’s in remission. But when those hormones start kicking in, or when school work ramps up….what if he starts backsliding? Will we be able to react quickly enough to avoid the crisis we experienced at the beginning of summer? Will I even know? My barometer is broken…”crisis” for me is much different than for parents of neurotypical children. I have a tendency to miss the subtle signs of an encroaching disaster because it’s become my “normal”. 

So we left things in a gray area….which is not a place where I’ve ever been comfortable. I like things tied up in neat little boxes. I probably could have pushed harder for an IEP…but I’m not sure that’s what I want. If The Challenging One can be successful without one, why would I want to add on layers of “difference” to a child who is already socially challenged?  After a good bit of soul searching, I can see that my discomfort is due to the ambiguity of the situation, not to any course of action we took or didn’t take. Making peace with ambiguity seems to be the life lesson that I will have to suffer through repeatedly, hoping that one day God will decide I’ve mastered it and will start delivering neatly packaged crises instead of all of this randomness!

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My foray into public schooling…

Today was day 2. The Challenging One again walked into and out of school with a big grin on his face. His teacher brought him to the car and assured me that he had had two great days. Only those of you who have a child who came programmed with standard settings of only angry or depressed can appreciate how it feels to hear that. Like your whole soul just sighs in relief and thankfulness.

Since things are going so well, I thought I’d take the opportunity to examine my expectations/fears of public schooling against the realities. I realize this is only our second day, and my bubble could burst tomorrow, but here goes.

  1. I feared our new “unified” school system would prove a nightmare. So far, from what I’ve heard from many parents, it is. Racial tensions (never easy around here) at an all-time low, urban vs. suburban animosity boiling, late busses, busses that never show up, a cafeteria system that’s not working yet….etc., etc., etc. But you know what? That’s administrative stuff (although if it were 5:30 and my child wasn’t home yet, someone would be hearing from me). From what I’ve seen at our school, everyone is smiling. Everyone truly seems happy to be there. They love the kids. However this unwanted merger has uprooted their lives, they’re being teachers first….at least while on school grounds. I’m sure the wine bottles come out at home.
  2. Naivete: The Challenging One didn’t even know what divorce was until the begining of 4th grade. *Maybe” the end of third. But I think I remember his asking on the first day of 4th grade what divorce was, because “so-and-so’s parents are getting one”. Yes, I know there are many lifestyles, cultures and family situations out there…I’m just not sure I’m ready to deal with all of that. Just day 2…but so far, so good.
  3. Coming from a school of 200, I feared getting lost in the bureaucracy. While I am hearing complaints of that — to be expected when merging two separate bureaucracies, one of which wants nothing to do with the other — I haven’t experienced that personally. Everyone I’ve encountered seems to know exactly what’s going on with my child.
  4. This one is going kind to sound kind of silly, but my biggest worry was going from the “customer to consumer” mindset. Yes, I know our taxes pay for public schools…I’ve been paying into a system I didn’t use for 15 years. But it’s not quite the same as writing a check to a school. I thought that leaving the fee-for-service environment would land me in “you get what you get and you don’t pitch a fit” land…what I typically expect for “freebies”. This is one that has not materialized. I thought I would be intimidated by the fact that the school doesn’t need anything from me (like a tuition check). Nope. The lack of quid pro quo is balanced out by federal law that is pretty clear. I’m not asking them to do me a favor; I’m simply asking them to do what the law says they must. They expect to do it…and they’re good at it.
  5. How will I ever get used to PTA meetings where they don’t serve wine? (No, really…although this is probably unique to Catholic schools.) 😉

I have a feeling I’m going to wish I had done this for The Challenging One sooner. The Easy One and The Exuberant One are staying at their tiny Catholic school. They’re thriving there, and it’s the perfect place for them. And I’m becoming more and more convinced that public school is indeed the perfect place for their brother.

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Musings on the week ahead…

The Challenging One starts his new school on Monday. Our first IEP meeting is Thursday. I’ve read a lot about how intimidating these meetings can be. But I’m actually looking forward to it. Doing the prep work, putting on “real” clothes and attending a business meeting remind me that I wasn’t always just a SAHM. This IEP process helps me remember that the professional businesswoman I used to be is still there, hiding behind the professional nose-and-bottom wiper. I can’t wait for the give-and-take of negotiation!

And yet there’s this other thing. Our school has an incredible reputation, and everyone I’ve met there has been equally amazing. But…this is the first year of a unified school district that only one of the merged districts wanted. “Unity” is hard to find. The folks who were opposed to the merger are trying to break away and start their own municipal systems. Lawsuits are flying. Teachers and staff are getting laid off by the dozens. Parents are confused. Teacher morale is incredibly low. And nobody knows what’s going to happen next year when the municipal systems may or may not be in place (referendums passed overwhelmingly, but there are still legal obstacles).

Part of me thinks that this is the worst possible year to switch from private to public school. But the rest of me knows that there’s no way The Challenging One would get through 5th grade without more help than our tiny Catholic school can provide. And I know that most teachers do what they do out of love for the kids; I know they’ll do their level best to keep their turmoil, fear and uncertainty hidden from the kids. God bless them all.

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Mommy kindergarten angst…in the 5th grade

When The Challenging One started kindergarten, I was not the mom choking back tears. I was in Year 6 of survival mode. Between his behavioral issues and having two toddlers 11 months apart, I was truly doubting my ability to cope. There were many days when the only thing I accomplished was getting through the day without begging my husband to come home from work. So, no tears from me. As I walked away from the classroom, I felt like I was gulping that first, life-sustaining breath of air after nearly drowning. If I could have done cartwheels without breaking something, I would have done them all the way to the car. Even when the younger ones started school, things had been so hard for so long that it was a relief, not a loss.

Now it’s payback time. The Challenging One starts school on Monday. A new school. A big school. A public school that, while enjoying a reputation many private schools couldn’t buy with any amount of ad money, is part of a school system going through dramatic convulsions that won’t be resolved any time soon. A school where most of the faculty and staff won’t even know his name, much less the names of his siblings and dog, like the people at our tiny Catholic school. Where he won’t know his way around, how anything works, or even whom to ask. And this time he’s too old for me to walk in with him and hold his hand all the way to the classroom. I just have to wave goodbye from the carpool line. Gulp.

I know it’ll be a good year. It was the right decision. I love the people I’ve met at the school. I’m not as intimidated by the IEP process as I was when all this first started. While The Challenging One doesn’t often express his feelings, I think he’s excited about a new school. Sure, he’s nervous about not knowing anyone, but he’s also aware that he had dug himself a big hole with the kids he had been with since kindergarten. In a small school, it’s hard to shake a negative image, no matter how much you change. This is a chance to start over, not just academically, but socially.

So…if I ever looked at you like you were nuts for crying on the first day of kindergarten, I apologize. I’m getting my comeuppance now. I’ll be the one choking back tears so that The Easy One and The Exuberant One, who don’t start school for two more weeks, won’t get the impression we’re leaving their brother at some scary hell hole. So I’ll be smiling like a crazy woman and talking about how exciting this is until I can get home and sneak upstairs to “do my hair” and bawl like a baby. Or the mom of a kindergartener.

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Supernanny, come back!

Just like that, it’s over. For the past 7 weeks, I’ve had the privilege of handing The Challenging One off to Supernanny for 5 hours a day. Well, not really…no teeny car and no British accent. But the day treatment center has been life-altering. The rest of us got a break when The Challenging One was at his worst. His meds are straightened out. He got daily group and individual therapy. I met with the therapist and psychiatrist once a week. He’s happier and more in control than he’s ever been. Then, boom! All of a sudden, he’s discharged. I feel like the mom of a newborn, longing for the nurses who handled the baby so effortlessly. Why in the world would they let me take this child home? Do they really think I can do this on my own?

Apparently, they do. They think I can keep him stable, enroll him in a new school, secure an IEP, get homework done, etc. And I can, because I have to (and because we’ll still be there for outpatient therapy once a week). But still…Supernanny, please don’t go!

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Bless his heart….

I am as southern as they come. OK, I do wear shoes (although I didn’t as a child…at least from May through September), and I have all my teeth. I don’t like grits or sweet tea. I don’t have big hair (well, actually, I do…but I tame it with my straightening iron). On the other hand, I think most things taste better fried. I say “ma’am” and “sir,” and I’d probably be embarrassed if anyone counted how many times “y’all” rolls out of my mouth each day. I have to constantly remind myself that (overly) direct people aren’t rude….they just aren’t from here. And I won’t go to the mailbox without makeup. Given all that…how is it that it just now occurred to me that The Challenging One is a nigh-on perfect illustration of the dichotomy of “bless his heart”? In case you’ve never had the privilege of living in the south or loving a southerner, “bless his/her/your heart” can convey everything from sincere compassion to amused bewilderment to frustration to disguised disdain.  (Clue: if it’s followed by “she/he just…”, it’s not expressing compassion.)

So…how does this apply to The Challenging One? Believe me, he’s inspired “bless his hearts” all along the spectrum.

  • “Bless his heart, he just can’t help but argue.”
  • “Bless his heart, he couldn’t eat something squishy if his life depended on it.”
  • “I can spell a word to him, and he can’t even spell it back to me, bless his heart.”
  • “Bless his heart, his handwriting is so bad he should be a doctor…that is, if he could ever remember his multiplication tables.”
  • “Bless his heart, he’d have it a lot easier if he’d just buckle down and try instead of spending so much energy avoiding what he’s supposed to do.”
  • “Bless his heart, you’d think we were skinning him alive the way he carries on when we tell him to brush his teeth.”

In other words, he can’t spell, he has a horrible memory, he behaves in ways I just can’t explain rationally, I often want to wring his neck (another southernism…think a chicken pecking around in the yard on a Sunday afternoon) and he would argue with St. Peter himself…but he just can’t help it.

On the other hand…

  • “He’s never had it easy, bless his heart.”
  • “Bless his heart, it’s just not fair to be saddled with mood disorders AND learning disabilities.”
  • “Bless his heart, he is so dang charming when he’s happy.”
  • “Bless his heart, he’s been this way since he was a baby; I don’t think he knows what it feels like to be contented and happy.”
  • “Bless his heart, I know he doesn’t want to get upset about things other people wouldn’t even notice.”
  • “Bless his heart, it’s just not fair that he can’t remember something 30 seconds after he hears it.”

In other words…he got a bum deal. He didn’t ask for this, and I wish I could just wave my magic wand and make it go away.

So there you have it…”bless his heart” in all its glory. One word of caution, though…please don’t try this at home. Southern as a second language doesn’t often work out well. There are idiomatic minetraps everywhere; trip over them, and you’ll walk away to whispers of, “She’s just not from here, bless her heart.”

For more southernisms, please check out the blog that inspired me:  http://journeyintothespectrum.wordpress.com/2013/07/17/g-r-i-t-s-girls-raised-in-the-south/

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On to….the new “new normal”?

I’ve really enjoyed the current “new normal”. This summer has been unlike any other on a couple of fronts. For one thing, we’ve had a break from the heat. It’s barely gotten over 90…a real ice age around here. But mostly for the peace. I start dreading summer in January. It’s an extremely difficult time for The Challenging One, which makes it difficult for everyone. He’s never been one to hoard the misery. But this summer, he’s been gone 5 hours a day at his day treatment program, and he’s been much more controlled when he has been home. Therefore…peace.

But that all comes to a screeching halt Friday. Well, hopefully not screeching. Hopefully it will just be a quiet hiss of brakes. However you describe it, Friday is discharge day. He’s ecstatic. I’m terrified. Terrified that the fragile tranquility we’ve enjoyed this summer will evaporate  once he’s home all day. Terrified that he will revert to the “old normal” as soon as the door shuts behind him.  You see, The Challenging One is very transactional. He understands how he has to behave to be discharged Friday and that those behaviors must continue long-term  if he doesn’t want to go back. But he’s not able to generalize beyond that. He can’t anticipate other possible consequences to other behaviors. He. Just. Doesn’t. Get. It. I’m terrified that we’re going to have compliance without comprehension. Not that I’m knocking compliance…that’s still new enough to be treated with reverence. But without comprehension, without the ability to take the new behaviors he’s learned and apply them to new situations without being explicitly told to do so…well, let’s just say I may be holding my breath, but I’ll be doing it with supplementary oxygen nearby. And a case or two of wine.

And yet….he’s so much happier. It’s easy to forget how infectious his grin is when it’s usually camouflaged by either storm clouds or a flat affect, but once you’ve seen it, it can inspire you to keep plugging away. We’re on different kinds of meds than we ever have been before, and they seem to be working. The treatment facility doesn’t just boot you out; they have better transition planning and support than some big-name universities. There are weekly meetings for both parents and patients. The therapy director will help out with the IEP process and even attend meetings. And they’re always there. Not as a threat, but as a resource I’ll no longer hesitate to take advantage of (after having seen how young some of their kids are, I wish we had done it sooner). 

And this may all be moot; Friday discharge is not guaranteed. There are conditions: participation in group therapy (rather than insisting there’s no reason for him to be there), good behavior scores from home…and compliance with homework. Yep, homework starts today. It’s actually an ingenious idea to ease kids out of the more relaxed summer mode back into a school routine. But homework has always been our nemesis. And the expectations are high. At the first sign of pushback — even something like eye-rolling — I am to take the homework away and make him go without it the next day. Which, with time outs both for incomplete assignments and for failure to comply with adult instructions, could result in as much as a 4-hour time-out. And the delay of his discharge date. So I’m anxious to see what happens today. If he’s able to get through his homework (no pencil-whipping allowed, either), I’ll know that he can do it if the stakes are high enough. So then it’ll be up to me to up the ante. 

No matter what happens, I’ll miss it. I can’t describe how it feels to be around people who get it. People who understand why I roll my eyes when parents wheel out their righteous indignation over something as far down my list of behavioral priorities as use of the word “stupid”. (OK, I don’t let them call people stupid…but is it really a sign of moral decay for them to call a TV show stupid? Honestly, if that’s all you have to worry about, your kids are so close to being perfect that you should drop to your knees in a prayer of thanksgiving. Right now. I have a bunch of more important crap to deal with first.) People who understand how it feels to know other people think you’re a lazy parent who doesn’t bother to discipline. Who know how it feels to not enjoy being around your own child. But at least now I know they’re out there, and I know where to find them should I need a reminder. 

 

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Well, crap…

I want this to be a rant. I want to have an on-the-floor, kicking, screaming tantrum. But I’m writing this to see if I can find something meaningful in this terrible, awful, no-good day.

I could tell when I picked The Challenging One up from his day treatment center that his new emotional control was, at least temporarily, circling the drain. He was about to blow. And he did. First at his sister for something so trivial I can’t even remember what it was. But the real problem was that, not only was he expecting to be discharged Monday (he’s not), the treatment center starts “real school” next week, complete with homework.

Out of nowhere, we were back to square one. Any attempt I made to explain what needs to happen before he is discharged was vigorously rebutted, although without any logic whatsoever. A meltdown ensued….far from the worst, but the worst I’ve seen in the 2 weeks we’ve been living with a “normal” kid. And all I can think is crap, crap, crap. This should NOT be happening with the meds he’s on. Can this kid not get a break? Can the family not get a break?

Then I looked at his goal sheet from the treatment center and noticed that the line where they write the time they give him his Trileptal is blank. For whatever reason, maybe because the regular person was out today, he didn’t get it. And there you have the paradox of parenting an emotionally unstable child. I would love to blame this afternoon on the fact that he didn’t get his meds. On the other hand, how scary is it if missing one dose (he gets it four times a day) leads to this? See what I mean? There’s no good answer.

And then I get a notice that I’ve been called for jury duty. Right about the time The Challenging One should be getting that discharge. Unless I can get it postponed, my choices are to place him somewhere (no idea where) with someone who has no idea how to manage him. Sure, I could probably get him to stay longer at the treatment facility, but at $300/day, that’s expensive babysitting. And this is the time of year when my husband works 12-14 hour days. He really, really can’t take off a week right now. Not doesn’t want to. Can’t. And I dread telling him; he’s stressed enough.

So can I take anything from this crummy day, other than cathartic whining in this post?  Well, let’s see..

  • Maybe I can relax a bit now that the thing I’ve been dreading has happened. We’ve had a major regression. The boogey man has shown his face; I don’t have to fear him anymore.
  • Maybe it really will turn out to be as simple as getting his meds right.
  • Maybe I can convince the judge to postpone my jury duty until school starts and my husband’s work schedule gets (somewhat) back to normal.
  • I filled out the registration forms for The Easy One and The Exuberant One to return to the small Catholic school that has been such a blessing in our lives.
  • The public school The Challenging One will be attending is being helpful and proactive with the IEP process.

If I can take five positives from a truly awful day, maybe it wasn’t that bad after all. If we hadn’t had The Challenging One in day treatment, this would be the norm. I’m thankful for that. And I’m prayerful and hopeful that we’ll be back on track tomorrow.

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When oppositionality and learning disorders don’t play nicely

School was easy for me (a photographic memory didn’t hurt). And I liked learning. So when The Challenging One started resisting even the tiniest amount of kindergarten homework, I tried to fix it with a battle of wills: “Oh, yes, you will do your homework!” The arguments, tears and meltdowns got worse each year, as did the grades. And because he was so oppositional in general, I didn’t give much thought to learning disabilities. With tooth brushing causing WWIII, it seemed obvious that that same oppositionality was behind his academic problems. I thought his homework resistance was just another thing he fought us on. So my approach was, “Buck up and do your work. Just because it’s hard doesn’t mean you don’t have to do it.” Besides, I truly couldn’t comprehend that he didn’t “get it”.  Arrogant but true. Even when he was diagnosed with ADHD, it still hadn’t dawned on me that it was a matter of “can’t” rather than “won’t”.

I wasn’t a total loser mom. I enrolled him in a highly-regarded tutoring program for kids with learning disabilities. It was a good program, but his rigidity made it fruitless. His brain insisted that school was school, tutoring was tutoring, homework was homework, and you can’t blur the lines. He couldn’t transfer his learning to the classroom. And the suggestion that he work on his math homework with his tutor brought him to tears. Even though he knew he’d be crying over his math homework when we got home, the idea of crossing that line was simply overwhelming.

So…I planned to spend the summer on reading, math and typing (because handwriting is so difficult for him that he doesn’t have any bandwidth left to think). But by the last day of school, his fragile ability to control his emotions evaporated, and he bounced between rage and tears to a degree I hadn’t seen before. By the time we enrolled him in the day treatment program, I was convinced. Convinced that I’m dealing with a child with some serious challenges, not just a bad attitude. Convinced that I’m not equipped to handle either his learning disabilities or his mood disorders without a lot of help. Convinced that this summer is “make or break” time for him. And convinced that having both oppositionality and learning disabilities stinks. So i got busy…researching his possible diagnoses, moving him to a public school so he can have an IEP, working on his emotional control, and, in general, playing catchup.

I still can’t claim that I get it…that I can empathize with how his brain processes information. And I’m still not very good at helping him with things that are obvious to me. It’s like trying to explain that water is wet. But I do believe that his challenges are real; “buck up” is not the answer. He’s a child with mood disorders and learning disabilities, and each makes the other worse. I may be late to the game, but by all that’s holy, I’m going to fight for everything he needs from here on out.

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“Walk slower than you know how to…”

Yesterday afternoon seemed endless. The Challenging One had a meltdown in the car on the way home from his day treatment facility. This was the first in a week, and it dampened my own hopes quite a bit. It was blistering hot with the kind of humidity that makes you feel like you need gills to breathe. Everybody was bored. And the (Not So) Easy One was begging me to just do something.

So I had the brilliant idea to go geocaching. I have no idea how I came up with that. Had never done it before. Didn’t even know the first thing about it. But I found an online map that said there was one 0.4 miles from our house. In my eagerness to impress my brood with my spontaneity, we set off without another thought. Well, we did bring water (thank goodness).

What I didn’t realize — and should have — is that the given distances are as the crow flies. Not wandering in and out of neighborhoods and parking lots. I’m not sure how far we ended up walking. I did give the kids the chance to turn back, and they declined. Nonetheless, by the time we found the little whatchamacallit and headed home, they were done. DONE.

The boys were OK. Even The Challenging One had recovered from his episode enough to see it as an adventure, although a hot, sweaty, tiring one. The Easy One, however, had slowed down to the point where a snail would leave her in its dust, and the whining…oh my goodness, the whining! (Lest you think I was being abusive, this was not a distance that was out of a child’s capability, and we had plenty of water. This has more to do with a sedentary lifestyle…but that’s for another time).

At one point, with the boys ahead of me and The Easy One trailing behind, she yelled at me to slow down. Fed up by this point, I snapped back, “I don’t know how to walk any slower!” She replied, “Then go slower than you know how to.”

Wow. What simple profundity from a 7-year-old. It was if she had stripped me naked and bared my worst faults, right there in the middle of rush hour traffic, with friends and neighbors honking greetings as they drove by.

Isn’t that one of the most fundamental things we have to do as spouses, parents, friends, etc.? We love more than we know how to. And because of that love, we’re braver than we know how to be. We sacrifice more than we know how to. We’re more patient that we know how to be. And, by the love of all that’s holy, we persevere more than we know how to. Ever done laundry when everyone in the house has a stomach bug? How many times you have to change your own clothes while trying not to let your shirt touch your face?

Persevering and bravery are especially true for a mom of a special needs child. For some of us, we know where we’re going, and it’s not pretty. Still, we persevere and make “now” as awesome as we can. For others, we have no idea where we’ll end up and no clue as to whether the things we’re doing help or hurt. We don’t know how we’ll maintain our patience during weeks and months of our child defying us over anything and everything. We don’t know how in the world we’ll manage the teen years when the elementary years sometimes drive us to our knees. We don’t know how to be our child’s voice to a world that just sees a spoiled brat. But we do these things anyway. More than we know how to. Because we must.

I called my husband and asked him to stop and get the kids on his way home from work (I walked with the dog.). I may not have known how to walk more slowly, but I did know how to make my kids get home more quickly. And, surprisingly, they can’t wait for our next geocaching adventure. But this time we’ll drive to a closer starting point. 😉

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’tis a gift to be simple, ’tis a gift to be free….

That song is from the soundtrack of my Catholic childhood. I can still hear our music teacher singing it, and I picture her just as she was 35 (ahem…maybe 40?) years ago. And then I start feeling contemplative because that’s not a gift I have. I am not a simple girl.

I used to love to cook. When we first got married, I spent every Sunday afternoon preparing  elaborate gourmet meals. But after The Challenging One came along and became relentlessly affixed to my ankles whenever I was in the kitchen, I had to just get in and get out. And then came The Exuberant One and The Easy One, turning their cute little runny noses up at anything that wasn’t a chicken nugget or a baby carrot. That’s when cooking became a chore. I find nothing rewarding about boiling a pot of pasta and throwing a simple sauce on it….blech. Boring. Almost as boring as meal planning when you’re pretty much limited to recipes with 3-5 ingredients. Which is why I spend every May stocking my freezer with pre-assembled meals so that I don’t have to worry about any of that while the kids are home for the summer. I need at least an hour of uninterrupted time to tackle that chore. And a glass of wine.

Anyway, about this simplicity thing. It’s not just cooking. I won’t go to the gym without makeup, my hair is always highlighted (except in the summer when I wear it up), and I could run through $1000 in Sephora without breaking a sweat. OK, that’s probably more vanity than lack of simplicity, but you get the point. (For the record, I’ve never spent $1000 in Sephora…).

So I think maybe I’ve had this song running through my head for a reason. I think maybe God is telling me to step back and focus on what’s important. And that takes me (as pretty much everything does) back to The Challenging One. How does simplicity fit into raising a child with a mood disorder, learning disorders, etc.?  For one thing, I guess that’s why we’re no longer forcing him to play a sport. He hates sports. As long as he gets out and runs around once in a while, I don’t need him to be athletic. When you get down to it, I don’t need him to be involved in any extracurricular activities. Maybe simplicity means stripping away everything that isn’t helping either his mental health or his learning. Those two things take a tremendous amount of effort; he doesn’t need anything else. To him, normal, everyday things are as stressful as a crazy, hectic, once-a-decade day would be to the rest of us. What this child needs is…simplicity.

And there’s more. I’ve been so hyperfocused on getting a diagnosis. But, really….does a label matter as long as he is able to function at home and at school, if he can play without fighting, if he can hear “no” without arguing, if he can handle frustration….and, perhaps most importantly, if he can just have fun being a kid? Do I really need any more than that? Does he? He’s doing great right now, but I find myself looking ahead to the next time things aren’t so great and trying to figure out what we’ll need to do then. When what I should be doing is just enjoying this child as I’ve never been able to before. Have a truly reciprocal conversation. Play a game. Tell jokes and giggle. Just be…..that’s about as simple as it gets. And maybe, just maybe, the memories we’re making now will help carry us through the next rough spell….and remind us of what we’re fighting for.

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Wanting to solve for “X” but settling for a glimpse behind the veil

Today, I see my son for who he really is. After years of emotional instability and weeks of outright belligerence, followed by days of sobbing and being tormented by obsessive thoughts of blindness and death, I see the boy I’ve had only occasional glimpses of. The one who’s incredibly sweet, eager to help, funny, perceptive and just about everything else you could wish your 10-year-old to be. I just want to scoop him up and hold him. And  yet….I’m angry that we lost a decade. For him and for our family. And I’m already dreading the day I know will come, when the combination of meds he’s on now will no longer work so well. And that day will come. Mental health is not algebra; there is no such thing as “solving for X” and claiming “mission accomplished”. So the question then becomes, can I be satisfied with these glimpses behind the veil that his emotional disorders have caused?

The answer is no; I can’t be satisfied with it. But I choose that dissatisfaction over never seeing my child as he is, free of the anger, defiance, tears and runaway emotions that result from his brain convincing him that the proverbial molehill is actually Mt. Everest. This time, though, my worries are for him. He’s getting his own glimpse of what “normal” feels like, and the intensive therapy at the day treatment program has helped him to understand things intellectually.  So I dread the day that he starts feeling “NOT normal” creep back. But, hopefully, now that he’s experienced “normal”, he’ll be willing to fight for it.  Goodness knows he’s fought tirelessly for things of far less importance…like the smallest shades of meaning in different words (usually to get himself out of trouble on a technicality). So here’s hoping he maintains that warrior heart when he needs it to fight for himself.

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Wishes for independence

Independence Day has always been my favorite holiday. Lately, though, it’s been making me kind of sad, because I see our country moving in a direction where people sell their independence for far too cheap a price. But that’s a difference post for a different blog. Today, I’m thinking about what independence will mean for my children. 

They’re actually pretty universal, although The Challenging One has a few extras thrown in. I’m pretty confident he’ll be able to have a house, a job, a family if he chooses…but there’s more to independence than living independently. I think the essential factor in his independence will be the confidence to trust his own brain. Not to know if a person is real or not, like the character in A Beautiful Mind.  That’s one thing we haven’t had to deal with. Just to know if his barometer (or thermometer, seismograph, etc.) is calibrated correctly. If his brain is screaming “Earthquake!,” I want him to be able to trust that it really is an earthquake and not just a little tremor. I want him to be able to trust that, if his brain alerts him to an injustice, it really is an injustice and not just his boss asking him to do his job. I want him to be confident that what he feels is pretty much in line with what other people would feel in the same situation.

Otherwise, my dreams for their independence don’t vary much. I want them to have critical thinking skills, so they can sift through the many conflicting messages the world bombards them with and discover what’s true. I want them to understand that, if they want to know what our founding fathers wrote, they need to turn to the original documents, not somebody else’s interpretation of what they wrote. I want them to be able to sense when a deal seems too good to be true and know how to go about verifying the offer before accepting it. But I think the most essential thing for their independence is for them to simply see value in being independent. The value of learning all you can so you don’t have to depend on other people to explain the world. The value of working hard so that your quality of life doesn’t depend on what someone else chooses to provide for you. The wisdom to know whether it’s time leave behind outdated beliefs and change with our culture or to stand fast to what you hold true and let the culture go on with out you. I don’t want them to have to depend on anyone else to tell them what to know, what to think, how to feel, or how to live. The day all of my children can do these things….that’s an Independence Day I will celebrate with all the enthusiasm I can muster at that age. 😉

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Political correctness, redux…

Today’s rant is sponsored by the word “fat”. Well, really the completely nonsensical way we gasp in horror if the word is mentioned but quietly judge moms of overweight kids (“How did she let that happen?”). We’re told that obesity is a national security risk and a childhood epidemic. On the other hand, heaven forbid we even think the word “fat” in our daughters’ presence….we might give them a negative body image. So does that mean it’s better for them to be fat than to worry about being fat? Nope. We’re supposed to keep our daughters from getting fat while teaching them that their bodies are perfect just the way they are. Talk about mixed messages.

This has been on my mind lately, because The Easy One would eat all day if I’d let her. She’s not fat, but her baby belly is starting to reappear…and she’s not a baby anymore. Which puts me in a bit of a tight spot. Sure, I can provide healthy meals and snacks, but how do I explain that, even with healthy foods, you can’t eat as much as you want? Even The Easy One isn’t that easy. I’ve tried “because I said so”.  I’ve also tried healthy vs. not healthy, but she wants to know why it’s not healthy. I know what’s going through her little head…she’s weighing the risks vs. the benefits. If eating a third helping at dinner will “make her die,” well, then she’ll live without it. But if it’ll just give her a hangnail, then why all the fuss?  I could bring it all to a screeching halt if I just said, “It’ll make you fat.” That she would understand. But here I am, dancing around the one word that will make the lightbulb go on. Of course I don’t want her to hate her body. But neither do I want her struggle with being overweight during her childhood and teens. I did it, and it’s not fun. I honestly have no idea what to do with this, and it’s frustrating (as if you couldn’t tell). I think my mom had it right. She never hesitated to point out when I was packing on the pounds. No, it didn’t feel good, but it was the truth. And the truth sure makes things simpler.

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