Updates and such

We're still trying to find a school for Snuggler for the fall. Yes, this fall. That means two weeks from now. It's not an easy process; New York is notorious for being difficult about school placements, and we're looking at a complicated array of needs. I went to visit one school a couple of weeks back, about which I had many questions and for which I only began to find out answers yesterday.

After talking with the school social worker I spoke with the "educational consultant" who is helping us, to de-brief. "I think that woman doesn't like me," I told her, "But she'll get over it!"

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My mother gave Snuggler a Nook for her birthday. I have mixed feelings about it; I'm beginning to hate what screens do to the family dynamic. But there are benefits, too.

The other night Snuggler downloaded an app called Songify, which turns whatever you say into a pop song. My kids are big Jane Austen fans, so they recorded oddities like "Mr. Darcy eating cheesecake in a bathtub outside", and had them altered into some sort of rap song. It was quite clever. And then all five of them (Eldest is home for an end-of-summer visit) sat around doing preschool karaoke and laughing endlessly.

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When you have several children, there is an enhancement to the one-thing-always-leads-to-another rule, so one thing leads to two or three things. I dunno what's with that; somebody must think that moms of many have an inner need to stay busy. On Tuesday I took Big Guy for a routine checkup and now I need to set up appointments for allergy shots, an ENT visit, and possibly a sleep study. Yesterday I went for a routine checkup and now I have to schedule a bone density test (thanks to my broken jaw), a dermatology visit, a mammogram, colonoscopy, GYN appointment and, er... something I can't remember. I go back to the dentist in ten days.

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Nonetheless, things are looking a bit better around here. I know that sounds ridiculous, because the odds that they could get worse (or even continue in the same vein) are pretty small. Snuggler is feeling more like herself. Andrew's depression is lifting. The boys are less anxious. My jaw is healing. I've had work coming in steadily, and even -- gasp! -- had time to do it.

I've been getting plenty of walking in, usually between two and four miles a day. This is easy in the city, because a) we have lots of sidewalks, and b) the alternative is paying for public transportation. At $2.50 per person per trip, it makes sense to walk if at all feasible. I also get in an extra quarter mile walking to the grocery store after discovering someone ate the last butter/milk/bread. And you know how often that happens!

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Tomorrow I'm off to Big Guy's school for his "senior meeting". Yes, it's his last year in high school. It will also be Eldest's last year in college. Andrew will officially become a senior, too, in October. Me, all I get are senior moments. I think that's okay, don't you?

Priorities, the hard way

Big Guy has been doing well for some time. We have not had to even think of calling 911 for over six months. And then on Thursday we had to make a call.

Four large policemen arrived. We discussed the situation, and agreed that based on the incident that triggered the call, Big Guy needed to be evaluated by a professional. So they summoned the EMTs, and off Big Guy went to the ER. Andrew went with him.

I've BTDT so many times that the first thought in my head was, "Okay, so for now everyone is safe."

That is how parents of kids like mine think. But not at first. The last time I was at the psych ER I spoke to a mom whose daughter was being admitted and said, "I know you feel like the biggest failure in the world right now, but you are awesome. You have done the very best thing you could do for your child, because right now she is SAFE. And whatever anyone thinks or anyone says, what you need to tell yourself over and over again is, my child is safe."

Despite the positive framing, there are things that are so not okay. While Big Guy was blowing up, Snuggler curled on the sofa, tears running down her face as she moaned, "Not again! Oh, no, not again!"

Little Guy screamed and ran into the bedroom and hid himself under the blankets. "No! No'! No!" he cried, "I don't want anyone to die!"

And I couldn't help them, because I had to focus entirely on managing Big Guy. Safety. Safety. Safety. There is a point where the whole world, the whole list of priorities in life reduces to safety.

I was very proud of Snuggler, who after a few minutes pulled herself together and, of her own accord, went in to solace Little Guy. Later she said, "It helped me, too, Mama. When you have to calm someone else you need to calm yourself first." That takes a degree of courage and insight that's unusual in an 11 year old.

After the police arrived and we were on safe ground again I packed up my two youngest and took them off to Dancer's dress rehearsal. I'm sure that sounds weird, but after a crisis my #1 priority shifts from safety to security, security, security. Oh how, oh how, oh how do you give a sense of security to children who have to live in an erratic and sometimes dangerous situation? How can kids grow up healthy when things can shift from safe to scary in a moment? One gives snuggles and hugs and love, and tries to keep life feeling as normal as possible. We make time and space in which to remember that this one event doesn't constitute the whole of our lives.

A delayed stress reaction hit Snuggler as we arrived at the theater. We had a bit of waiting time, so we hung out in a corner as she whimpered that she was scared. We played hangman, talked about school, waited in line. We watched -- and greatly enjoyed -- the performance. Dancer was stunning. When we got home at about 10pm, I emailed Snuggler's teachers to say they shouldn't expect to see any homework the next day.

Then Andrew called to say Big Guy had been deemed safe and was being sent home. Getting the others to bed, and more importantly to sleep, shot to the top of my priority list. Because, you see, it's hard to get to get a scared kid to sleep. Now my mantra was calm, calm, calm.

I washed dishes, talked to kids, got them to bed. Little Guy slept in the girls' room on the top bunk, "Because my brother won't find me up there." Snuggler opted to drift off in the living room, listening to an audio book.

Big Guy and Andrew arrived at midnight. Big Guy was exhausted and went straight to bed. The day was over. The next day (and perhaps for the next week or month) we'd most certainly see fallout, but it would be a new day. That wasn't today. I said my prayers, and went to sleep.

One of my favorite quotes is from Winston Churchill, who said, "When you're going through hell... keep going."

It's easier to keep going if I have my priorities in order. Be safe. Stay calm. Find the things that help you feel secure. Remember not to let the bad things become everything. Pray. And keep moving forward, at whatever tiny pace you can muster.  

To sleep, perchance to cope

A few months back Big Guy went to an allergist, who proclaimed him severely allergic to dust. Coincidentally, someone put a portable HEPA filter on the giveaway table in our building's basement, which we promptly installed in Big Guy's room. And, remarkably, Big Guy has stopped sleeping in school.

I think now that Big Guy can actually breathe, he sleeps better. Sleep is good, on a whole lot of fronts.

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When a baby cries, you check the usual things: whether he's been fed, needs burping, has a burning desire for a new diaper, or it's simply time for a nap. When preschoolers have meltdowns, we immediately consider when the child ate and sleep. But as kids get older, we sometimes forget that moodiness is strongly correlated to diet and sleep. Sleep matters, enormously.

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I had a miserable day yesterday when the world seemed to be working against me, and everything seemed impossible. Dumb stuff made me cry. All day long I reminded myself that I was just having a bad day (it would pass), and I was overtired (I'd slept four hours the night before), and life couldn't possibly be as impossible as it felt.

During about the 726th self-pep talk of the day I thought, I have a very low tolerance for despair. That was followed by, Maybe that's why I've become adept at resisting it. For I am not naturally tenacious or resilient or optimistic. Like most people, I've learned coping skills as a survival mechanism, because I've had difficulties with which I had to learn to cope.

Getting a good night's sleep truly makes a huge difference in how we see the world. Today is infinitely better than yesterday, if for no other reason than that I'm not battling physical exhaustion.

A different kind of day

This morning at 8 a.m. I set out for 142nd and Lenox Avenue, which if you don't live in New York you'd know by the name of deepest Harlem. Andrew had made the trip to the Armory there two weeks ago, to drop off Big Guy for the bus to camp. And because I am heading out for a week of Cub Scout camp (what was I thinking when I agreed to do that?) this weekend, I was on the hook to retrieve my older son from upstate New York before I left.


Scene One:
I get off the train and head toward the east-bound side of the street. A young woman near me says, "Oh, I hope I don't miss my bus!" I comment that I am aiming to catch the same one, and she smiles at me. When we get to the other side of the street (in time for the bus) she introduces herself as Stephanie, and tells me about how she works at the hospital and goes to a community college on the other end of Manhattan (though she lives in the Bronx) and how her hero is Neil deGrasse Tyson. It is an effusion the likes of which I rarely encounter; she is very sweet. I tell her how to get into the Museum of Natural History for a dollar, and she looks at me as if I've totally transformed her life.

Scene Two:
Andrew has given me specific transit instructions, because I am going to a rough neighborhood. I follow the directions, feeling somewhat foolish for all the caution. A block from the bus there is a loud bang, and everyone on the street momentarily freezes. We all look to see if anyone is bleeding on the ground, but since no one appears hurt the reel of life continues to roll.

Scene Three:
Moms are talking outside the Armory, including one who's ranting a bit about finding support for parents who have to deal with kids with severe ADHD. The camp we're all going to visit specializes in kids with various difficulties: there are kids on the autistic spectrum, kids with mental illnesses, kids with so many H's in their ADHD that it makes you gape. I offer a few supportive-sounding words, and suddenly find myself with new friends.

Mom #1 is a single mom who was originally told her son would never talk or comprehend what she said. He is eight, has various difficulties, but is a kid. She is a tenacious mother, a woman who has ground down the Department of Education by sheer persistence and gotten them to do right by her child. This is someone who lives below the poverty line and sued the DoE, anyway. (Me, I would have given up because I couldn't afford to do that.)

Mom #2 is a single mom whose son was born at six months' gestation after seven prior miscarriages. The baby went through brain surgery, lung surgery and several other major procedures before age two, at which point the dad said goodbye. The dad called a year later to say he had another baby by another woman, and oh, by the way, he tested positive for HIV. She talked about how she was recently told that her son is still at a first grade level in school, although when she works with him he can read on a third grade level. Mom #1 and I both advise that she needs to find a different school. We give her a short list of good ones.

Scene Four:
After two hours of talking to Mom #2 on the bus, we emerge into the greenery of the upper Catskill mountains to find our children. Big Guy expresses faux-indifference at seeing me, to which I respond with wry and dry humor. The staff laugh; one comments to Big Guy, "Now we know where you get it from!"

Big Guy gives me the grand tour of the camp. I am surprised at how big it is. He says there were about 300 kids. For his cabin of seven there were five counselors, though they worked in shifts, so there were never more than two or three at a time.

I contemplate the amount of work required of these counselors. I calculate the amount of respite given to the parents of the kids here. I guess that about a third of the camp consists of kids who, like Big Guy, are here on scholarship. God bless whoever contributes for that. These parents have it tough.

Scene Five:
A few hours later we are back on the bus. The mother across the aisle from me has two boys snuggled up against her. Somehow we strike up a conversation. Her 10-year old is asleep on her lap and she whispers, "They let him call home twice because he was so homesick. But now I know my boy loves me. He really loves me. He wanted me, and missed me." There are tears in her eyes.

I know what it is like to have a child who requires so much attention that you wonder if he has any idea of what it means to give. I am so glad that this woman has received the gift of the knowledge that her child cares.

Later she tells me she has five kids in all. They live in an awful neighborhood, rife with drug dealers and gangs. She is scared for her children. I admire her courage and her love. If I am ever rich I will give money to camps like this, to help people like her. I will.

Staying on Target

Big Guy left on Sunday for two weeks of sleepaway camp. It's the first time he's ever gone; his case management program provided the funding. So we went to Target last week to shop for skivvies and socks and insect repellent and a sleeping bag.


We were already on the train when he said he didn't want to go. I mean, he DIDN'T WANT TO GO.


He didn't want to go to Target. He didn't want to go to camp. In fact, he WASN'T going to go to camp, and I couldn't make him.


I mustered my calm indifference and said, "It sounds like you're anxious about something. You need to figure out what, and then we can talk about it."


But naturally I was wrong; he DIDN'T WANT TO GO.


I smiled with faux-serenity and said, "Ah, but remember you never want to go anywhere. This is new, which means it's unknown and scary. It will be fine once you get there."


No, he DIDN'T WANT TO GO. He hates swimming, he hates being outdoors, he hates everything about this camp he's never been to. (He loves swimming and the outdoors.) 


I shrugged, imitating nonchalance. I've been through this before. I've been though it a million times. I ignored the small corner of my brain that was hyperventilating (What if we've made all these plans and he bails? What if I have to deal with a bored and difficult teenager for two hot weeks?). Panic never makes anything better. It never makes me a more insightful mother. It never helps me respond in a more appropriate way. Sorry, panic -- you'll have to wait.


I told Big Guy that if camp was truly awful and truly miserable, I would compensate him for his misery. 


"How much?" he demanded.


"What's reasonable?" I countered. After a moment he said it didn't matter because he wasn't going.


We arrived at Target and went to see about sneakers. He didn't want sneakers. He certainly didn't want any of those sneakers. In fact, he didn't need shoes (he was wearing falling-apart work boots in 95-degree heat). He didn't want shirts (he only has five, all of which he's chewed) or socks ("I hate socks!") or anything else because he DIDN'T WANT TO GO.


I nodded, and began looking at shirts. Big Guy scowled and walked off. Shopping suddenly became rather peaceful. 


A corner of my brain considered worrying about him or not, but instead I chose to remember how much easier this kind of thing is now than it was when he was seven. 

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When Big Guy was younger, I couldn't let him stomp off to cool off. Back then I had to weigh many more variables: he had less self-control and could get hurt, or hurt me, or hurt someone else; I could get in legal trouble if I let him wander alone; I usually had other children with me, and had to figure out how to run after him and stay with the others at the same time. It was impossible.


When you're in impossible situations, you eventually learn that you're never going to handle things ideally, because, well, there's not always a best solution. Sometimes there's not even a good solution. The only chance you have to maybe handle things better than the last time is to keep a clear head. So you learn to talk yourself into that. 

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At Target I shopped for half an hour and then Big Guy re-appeared. "I thought I'd find you somewhere around here," he commented, neutrally. I showed him what I'd put in the cart, and he approved of everything except the socks, which he prefers at ankle height, and the toothpaste, because he doesn't like minty flavors. 


We found different toothpaste and socks, and went to the checkout. We didn't buy shoes.

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I've been stupidly looking on the camp's Facebook page every couple of hours, hoping that a photo of Big Guy will show up. Snuggler caught me at it, and looked at me with disbelief. "You know he hates having his picture taken. They're not going to post a picture of someone who's hiding his face or who looks annoyed that he's being photographed!"

She's right, of course. But I do think that may be his ratty black work boot in the lower left-hand corner of this picture. I can't tell for sure, because I can't smell it from here. But it looks like it might have the same olfactory effect. I almost miss it. I do miss my guy. Even though the quiet around here is kind of nice.

Catch-up edition

Little Guy and I hopped a bus on Friday (not the right one, but that's a different story) to help Eldest pack and store her belongings for the summer. Got to see my friend Kate's son Adam in his school musical production of Studs Terkel's Working, which was impressively good.

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Little Guy and I took a field trip to a 17th century house, where he bought two small figurines, one British and one Patriot. One the bus home he played "Super Colonial Brothers" with them, which involved a lot of running along imaginary platforms and jumping on things. I am unsure if either of the Colonial Brothers was named Mario.

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I have mostly recovered from the political debate. Didja know that some people can be major jerks? Yup. I guess in part it's an occupational hazard of politics, but I gather there's a degree of choice: you can be beef jerky or chicken jerky or pork jerky or (in the case of one of the candidates) 100% organic jerky. I've always figured that people who are jerks are their own punishment , but unfortunately there's spillover to the lives of others. In this case that didn't affect the attendees, but the behind-the-scenes view sure gave me a new perspective.

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Last week I had a team meeting up at Big Guy's school to introduce his new case worker and to discuss some concerns. One issue is writing ability. He is a very bright kid, but his writing output is nowhere near proportional to his knowledge of a subject. Some of that is anxiety-related, some may be a learning disability (I asked to have him tested), and some is just avoidance.

In the process of talking about this it came out that he has not been doing the practice essays for his upcoming State-required history exam. I asked, "So what happens when he doesn't do the work? Is he supposed to bring it home and do it there?" No, he just gets a zero. Hmmm. If I were a 15yo boy who has a deep aversion for writing, I'd take the zero, too. Because really, do most 15yo boys think things through? Do their minds work like this:

don't wanna -->get a zero --> get lower grade--> lower my chances of getting into a good college --> worse opportunities in life

No, no, no. This is not how most 15yo boys think. And since the class is global history, a subject my kid owns, he is going to be really upset if he gets a mediocre grade on the exam. Which, if he doesn't practice writing the particular style of essay needed, is going to happen.

So I came home and offered him $5 for each set of practice essays he completes. Sometimes a more immediate and positive consequence jump-starts the motivation.

And yeah, he should write the essays just because he should, but he's not gonna. The way I look at it, $5 gets me a lot more progress than should.

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Yikes! It's the end of the month. That means I have a 1200-word article due in four days. Better get busy...

In which we survive yet another health insurance boondoggle

Tomorrow Big Guy finally goes for a check-up. He was scheduled for one in early January, but when we went to fill a prescription on January 2 we found out that his State-sponsored insurance coverage had been terminated. It took three weeks to find out why. It took five weeks after that to get the coverage reinstated. It was a long and ugly story, punctuated by two occasions on which we needed to get $200+ worth of prescriptions filled.

Big Guy has been covered for exactly 35 days now. Today the doctor's office called to say that they were trying to register him for tomorrow, but the system kept saying his coverage has been discontinued.

Yes, insert the expostulation of your choice.

Thankfully, neither Andrew nor I ended up in the ER with heart failure. Neither of us were detained by the police for criminal activity, either. Which goes to show that if you set the bar low enough, even we can count  every day as a success.

But there was actually more success than that: after a near-stroke-inducing phone call to customer service, Andrew excavated a name from his files and found the number of a woman who'd helped him last month. And that competent woman, bless her, was able to get the coverage reinstated in a matter of 20 minutes.

At any rate, it occurs to me that it might be useful to relate some of the tidbits of information we picked up in the course of this adventure, in the event that some of it's helpful to others:

• Do not hesitate to involve your local elected official's office in resolving problems involving bureaucracy. With health insurance you'll have to either sign a HIPAA release or do conference calls with the elected's representative, but it is helpful to have someone working with you who can toss the state senator's name around.
• Some clinics, even at well-known hospitals, will work with you or waive fees if you are working in good faith to procure insurance or have applied for state coverage or Medicaid. It's always worth asking.  Big Guy was able to continue seeing his therapist and psychiatrist for two months without charge. 
• Some of the big-box stores (Walmart, Target, etc.) have reduced-cost prescription programs for common medications. One of Big Guy's meds was available for $10 from Target instead of $90.
• Check with your pharmacist to see if there are price differentials between different forms of the same medication. We discovered that the cost for one drug dropped $70 if we switched from tablets to capsules. The doctor had no idea this problem existed.
• If you're completely broke and don't have insurance, some of the Pharma companies will provide certain medications free of charge or at minimal cost. You have to prove financial need.

May you never need to use any of these tips. And if you do, you may email me in hysterics and I will give you my phone number and you can call me and expostulate for an hour and I will be nothing but sympathetic. I promise.

Family update

Little Guy has been taking a robotics class this semester. It's outstanding. What better activity can you imagine than to build something, program it, push buttons to make it move automatically, and then put your masterpiece into a ring with someone else's invention and let the two objects destroy each other? This is boy heaven. (Perhaps girl heaven, too, but no girls signed up.)

Thursday was the last session, and my parents arrived in town just in time to attend the observation session. Little Guy and his partner had built a robot whose arm flipped over its head, scorpion-like, to grab at the opposition. But what all the boys were in awe of was the rattlesnake robot someone else had built, which zapped out and bit at whatever came near it. Very cool.

At home we have an almost-complete Lego Mindstorms kit, passed down from my now-college-age nephew, and most of another kit passed on to us by my friend Kate. Little Guy had tried using Mindstorms a few times, but the projects were so complex he gave up after an hour or two. The software's also considerably older, and not as easy to use. But yesterday he pulled out the boxes anyway and started fishing around; he'd decided to make a robot, the one he said was hardest robot in the guide book. "I figure I can do one section a day, Mom," he said.

And he's succeeding. Whatever else they built in robotics class, they built up my boy's confidence. So far his new robot can rotate, and it has one arm that's supposed to claw at things. The arm isn't working yet; Little Guy has matter-of-factly analyzed it and has some theories on what needs to be changed.

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Snuggler has had a good time with Kiss Me, Kate. She's been hanging out with the 12- and 13-year olds, who tend to chatter less in the wings. Having funny, engaging older kids who've adopted her as one of their own has been a delightful solution to the impulse to shush kids her own age.

Thursday night Snuggler had her MRI. This was the last step in ruling out neurofibromatosis. I stayed in the room with her. She's always been sensitive to loud noises, and certain types of clanks and noises were clearly more stressful to her than others. There was one beeping sound that shot her heart rate up from 93 to 104 in a matter of seconds. I watched as she took deep breaths and closed her eyes to calm herself, and within another ten seconds her heart rate had dropped back to about 96. It was an impressive display of mind over matter. I exhaled, too: she has learned to cope.

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Big Guy started a class at the historical society last Saturday. It's free (a prerequisite, since he often can't manage activities even when he wants to go), seven weeks long (a manageable length), and there's no homework (which makes participation more likely). I am trying not to get too excited that he's trying this, because I don't want to be frustrated again if/when he stops going. Last semester he made it to four classes in a course on U.S. protest music. This class is on American revolutions that didn't succeed.

History used to be Big Guy's passion.When he was five he once opened a conversation with my mother by saying, "So who's your favorite Civil War general, Maman?" Later, when he was hospitalized at age seven, he went to the day room and drew pictures of the Monitor, of ironclad fame. A social worker asked him perkily, "Which TV show is that from?"

We don't see much of his history passion any more. I am grateful that we see it at all.

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Dancer goes into tech week next week. I remind myself that at least her tech didn't overlap with Snuggler's tech, and that it didn't even conflict with performances. She is excited to be dancing in three separate pieces for her spring performance, including an excerpt from Balanchine's Stars and Stripes, and the four cygnets piece from the end of Swan Lake. She's also in a new piece being choreographed by Brian Reeder.

If you're in the city and are interested in coming, drop me a line and I'll send you the link for buying tickets.

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And guess who's coming to visit? Eldest's spring break starts at the end of this week. We are sooooo missing her, and are beyond eager to have her home.

Convenience junkie

For Lent my computer has given up all my Microsoft Office products. They freeze. I can't do things the way I normally do. I have to find other ways to function. That has advantages, though most of the time I don't appreciate them. I want it all to be easy.

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Last week I took Snuggler to the pediatric neurology clinic for an evaluation. We waited and waited, and 90 minutes after our appointment time had passed I went to the desk and asked, with as much good cheer as I could muster, how long the wait might be. "Oh," said the man, smiling, "It's usually two to three hours. But the appointment itself takes 45-50 minutes. They're very thorough." I thanked him, sat down, and reframed my perspective.

Going to a public health clinic is a different experience than going to a private doctor. If you bring along a middle-class attitude that time is money, you will be annoyed that your time is (and by inference, you personally are) worth so little. An alternative view is that you're getting something valuable for next-to-free, and you are paying for it in units of inconvenience. A third perspective is that this top-name hospital is donating three excellent neurologists to serve the public good one day a week, and they're doing the best they can with the limited resources they can give.

Whether you are thankful that you get called after two hours is a matter of how you look at it, and where your heart is. You'd think a steady diet of convenience would nourish one's sense of gratitude, but often it just feeds a sense of entitlement to smooth sailing.

At a minimum, I am grateful that the doctor -- who turned out to be personable and, indeed, very thorough -- did not think Snuggler has neurofibromatosis.

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Many years ago, when we first started having major medical bills for Big Guy, we cut back on eating out and entertainment. Later we belt-tightened and stopped buying books; we delayed repairs and I got better at economy cooking. We developed a pipeline for hand-me-downs, and did away with a clothing budget. I took on more freelance work. We fine-tuned the concept of the staycation long before the word came into use. In short, we found ways to cope.

One downside of convenience is that it doesn't tend to build coping skills. Nor does it hone one's ability to be resourceful and creative. It's only when we face limits that we need to figure out how to get over or under or around barriers. That suggests to me that the people who will invent the next generation of life-changing technology are unlikely to come from the ranks of those who had everything handed to them on a silver platter.It's hard to identify what people need if your only experience with need is at the margin.

Which isn't to say that a life full of barriers is desirable, but the skills we develop when we have to overcome difficulties do have a place.

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I once read a book on the history of fear, which pointed out in years gone by the thing people feared most was an early demise. The author claimed that since this danger has largely been eliminated through modern medicine, we have replaced it with a visceral fear of failure. I suspect this is true; when I was pregnant with Eldest, I wasn't nearly as afraid of dying as I was that my 'birth plan' wouldn't go smoothly. It's a little weird.

Convenience -- or the lack of real difficulty -- can do funky stuff to your perspective. Once, after receiving notice that our housing costs would increase (again), I despaired that there was no fat left in our budget to trim. As I wailed and railed the thought popped up, What on earth are you crying about? You're still eating three meals a day! In its own bizarre way that was a comfort. For there's a difference between not being able to make ends meet in a way that allows me to lead my comfortable middle-class American life and being unable to feed my family.

Sometimes we get so accustomed to convenience that we panic that we'll starve, before we've ever gone hungry a single day.

Forgetfulness

Big Guy and I went to church alone last night. The rest of the family had gone in the morning, but we'd stayed home because of a shower stalemate. That resolved itself satisfactorily in the afternoon, so we went to the 8pm service uptown, and I rediscovered two things:

1. Relationships with teens are almost always better one-on-one, when you're doing something away from home.

2. It's often easier to talk side-by-side than face-to-face. That way you're traveling together, headed the same direction. (Friends who live in the 'burbs tell me their best conversations happen in the car. I believe it.)

I knew both those things. Really, I did. But like an embarrassingly large portion of parenting wisdom,  these insights, these tidbits of insight got lost. I ought to write myself a book of all the pithy parenting things I forget, and refer to it when I want to bang my head against a wall. I might re-learn something.

*         *         *         *          *

For many years I struggled with the story of Adam and Eve, because I couldn't believe they could be so stupid. I mean, it was one tree. How hard is that?! Then one day I thought, What if 'all the law and the prophets' was summed up... could I keep that one rule? Could I hold it in the forefront of my mind all day for a single day? Sigh. No, I couldn't. I forget the basics, all the time. (Sorry, Adam and Eve: I misjudged you. I get it now. Most days.)

Even when we have our priorities in order and work hard to align our days with each with them, we forget. Because, you know, that project is due and the kids are squabbling. Or someone said something hurtful and I'm out of sorts. Or difficulties have multiplied likemanic brooms, and the Sorcerer's Apprentice has set them to sweeping crazily at my composure. Or maybe (probably) because the path of least resistance is broad and easy, and I veer onto it, unthinkingly.

*         *         *         *          *

These are some of the things that I know matter in parenting that I forget:

• touch your children daily
• say encouraging things regularly
• ask questions that show you are interested
• stay quiet if you can't say it with charity
• focus on responding instead of reacting
• know their 'love language' -- and speak it
• assume it will take many times, perhaps hundreds or thousands of times, before they understand and remember basic manners
• laugh as much as possible
• make one-on-one time happen
• remember to notice when they do something right
• spend enough time with them that random thoughts come to the surface
• let them see that you, too, struggle
• let them know what you believe. Often.
• show them how you think through problems
• stories of your (and their) childhood are precious
• new experiences trump new toys

Contribute, please.

Four-kid update

We have medication for Big Guy. Whew! I mean, WHEW! Things were getting pretty hairy, since we'd run out of one kind on Saturday. Even though the half-life on it is quite long he'd come in yesterday afternoon saying, "Mom, I had a bad day at school. I was really irritable and depressed all day."

We still don't have insurance coverage for him, but Andrew dedicated five hours to dealing with that yesterday, and we're coming closer to a resolution. Rah! for Andrew. I mean, RAH!

*        *        *        *         *

Snuggler has a part in the ensemble of Kiss Me, Kate! Once a year the children's theater does a big musical for the older kids -- many of whom have been doing shows for a decade -- and this year Snuggler was old enough to audition. That's exciting.

Now that our second semester schedule is beginning to gel (I couldn't sign up for anything else until casting came out, because we're talking 3-4 three-hour rehearsals a week), I can think about taking Snuggler to speech therapy. She has a recalcitrant 'R' sound that is significant enough to limit the kinds of roles she can get. We spent a year working on it to no effect; this is kind of our last shot, since we're expecting that she'll be in school next year and will have limited free time.

*        *        *        *         *

Little Guy has joined the Cub Scouts. A friend once commented that 90% of childhood activities up to age 10 are determined by the outfit. I think this is true. This kid loves his uniform.

My brother sent us some money for Christmas, and I opted to spend it on having one super-cool activity for Little Guy in this last semester of homeschooling. So I enrolled him in a robotics class. He'd taken a class with these folks last spring and loved it. But when it came time to go yesterday Little Guy was suddenly paralyzed with anxiety. After a lengthy intervention I figured out that he was afraid that since he was going to be the youngest (the class is for ages 8-12) he'd do badly, or that the older kids would laugh at him. I pointed out that the advantage of being the smallest is that no one expects you to be the best. And we went through the usual "Even if you're scared, you can put your shoes on" and "Even if you're scared, you can walk to the train" kind of thing. 

When we arrived and saw the place and it was real, it was do-able. Which is why my core strategy for dealing with a balking child is to say, "It's okay if you're scared. We'll go, and if you get there and it still seems hard you can wait outside until you feel comfortable." Because usually the fear is mixed with curiosity, or interest, or desire-to-go. And unless you can get to the physical place where the child remembers the positive part of the mixed feelings, you don't stand a chance.    

When I picked up Little Guy after class he practically flew into my arms with excitement, and yammered on and on and on about the super-cool wind-up robot he had made. Robotics is now the best thing ever.

*        *        *        *         *

Dancer's scholarship interview and exam is this afternoon. Pray for her. She really wants to go to this school, and unless funding comes through, she can't. 

 

From YIKES! to yikes

I'm in one of those phases where there are 400 ideas floating around in my head at once. This is a relief; I'm emerging from a stretch where my brain turned into left-out Play-Doh, the kind abandoned in a just-moist-enough spot to be of indeterminate color, hard, cracked and moldy.

Most of the atrophy was due to an extraordinary string of hard hits at year-end. The most significant of those was discovering (right after an ER visit) that Big Guy's health insurance had been cancelled. We hadn't been notified by the carrier, and despite logging many hours in phone-tree hell still haven't found out why it happened. Nor have we succeeded in reinstating it. I have Big Guy's case worker on it, as well as a friend who works for a State senator. But no insurance for Big Guy = no psychiatrist = no medication = oh-wow-let's-not-go-there. I can get scripts for meds through a city hospital clinic if I have to (after a half-day in a waiting room), but the cost of filling them is prohibitive. It's a problem.

I'm writing about this as if I handled the news calmly, which I did not. Externally I was reasonably placid, but inside -- wow! -- my feelings resembled an electrified cat. I reached my freak-out capacity the day I had to go up to Big Guy's parent-teacher conferences. I sat on the bus alone and stared out the window at the gray trees, cried a bit, prayed a lot, and decided to assume that things will get figured out and we will get meds within the timeframe that's needed. Whether it actually works out that way or not is almost irrelevant: I stink at panicking, and have to figure out a way to keep hysteria at bay, or else I can't function. Panic makes my mind blurry, and keeps me from meeting my deadlines, and puts static into family relationships. So I'm making a basic assumption that all will be well, putting my worries in a box, and allowing myself to take them out once in a while to play with. It doesn't solve the insurance problem faster, but it at least allows me access to the brain cells that allow me to try to solve it at all.

Holding it together, sometimes

I went up to Big Guy's school today for parent-teacher conferences. Oh, how I didn't want to go! It meant going to a bus terminal that I never use, finding a bus line I've never ridden, going on a route I'd never traveled, and getting off at a stop I didn't know. I had no idea how much it was going to cost. And once I arrived I was going to have to walk some undetermined distance to get to the school. In the rain. Ugh.

It was one of those things that falls in the category of brushing your teeth: you do it because you have to, not because you want to. I knew that once I'd done it, it would not be a big deal -- it was only the first-timeness that was making me uncomfy. So I chalked it up to experiencing, on a small scale, the kind of anxiety that some of my kids (including Big Guy) experience whenever we do something new.

It really wasn't a big deal. It's easier to get to this school than Big Guy's old school (which required two trains and a taxi). And the teachers were all pleasant, and had good things to say, and they like my son. They think he's a great kid.

Which is good. I mean, it would be nice if some of that light would shine here at home, too. But in a way it's okay if he turns it on for others and leaves us in the dark. At least that means he can hold it together sometimes.

*        *         *         *         *

Being able to do things only sometimes is confusing. I've known people to point to sometimes as evidence that if a child only tried harder, he or she would be capable of doing something all the time. That's one possible explanation. There are others. In my experience when a child can do things sometimes and not others, it's often because the child is not yet strong enough to do it consistently. He can do it in some settings and not others, or perhaps on days when he had a lot of sleep the night before, or when he's feeling uncharacteristically confident.

When a child can only do things sometimes, it's usually useful to ask what it was that was different about the times he was successful, to see if we can replicate the circumstances that make success possible.

When a child can only do things sometimes we may need to consider what kind of effort it takes for him to do it. We might have to think in terms of battery hours (how long before he needs to recharge?) or about what prophylactic measures will extend his abilities. These approaches tend to work better than assuming the kid isn't trying hard enough.

The size of the problem

I was talking to a dad of two the other day, as he held his crying 2yo in one arm and his newborn in the other. "Ah, you've learned to hold both of them already!" I laughed, recognizing the how on earth am I supposed to manage this? look on his face. He wasn't sure he'd accomplished what I thought he had, and he asked how one does manage two, and I advised, "Oh, there's no right way. Half the trick is not to think about it -- just do it."

The good thing about most I-don't-know-what-to-do parenting crises when your kids are young is that they last a whopping five minutes. Which means you don't really need Calgon to take you away; what you need is a five-minute block of patience, or endurance, or lip-zipping. You need to let that wave of frustration or insecurity wash over you, instead of giving in to the feeling that you're drowning.

There are any number of times in life when we feel we are going under when in reality we're just being smacked in the face with a wave. We're facing a five minute problem. Or an hour-long problem. Or a two-day problem. Or a $100-a-month problem.

Which isn't to say that we have the resources at that moment to manage through the next five minutes or come up with another $100. But figuring out the size of the problem can help keep it in perspective. We can say to ourselves, "Okay, so I can't see a way out of this now, but this is a [length of time] problem. It will pass. It will pass. And I will figure it out."

And usually it does, and we do.

*        *        *         *         *

There are other kinds of problems, of course. The other day the mom of a 20-something boy who is off at college wrote to a listserv I'm on, to say she's terrified because her son is deeply depressed. She can't persuade him to go to the psychiatrist. He won't exercise or go out or shower. He doesn't want help, and he definitely doesn't want her help.

Another woman on the list, whose adult daughter had been severely anorexic wrote in reply that when she was terrified about her daughter she told a therapist, "It's my job as her mom to keep her alive!" and the therapist gently replied, "No. When she was little it was your job to keep her alive. She's an adult now. And that's not your job any more. It's hers."

Sometimes it's not in our power to change things we desperately want to change. Sometimes we are relegated to the sidelines to flap our arms helplessly. Much as we'd like to, we cannot climb into the mind of the depressed person and change his thoughts. We cannot make choices for the person prone to rage or alcohol abuse. We cannot force a self-centered person to choose a more thoughtful path. We can present options, make recommendations, pray feverishly, ache terribly, bring the person to professionals who can help. But we cannot be that person and do the things for him or her that are needed.

And here our perception of the size of the problem whacks us upside the head in a different way. For failing (refusing?) to recognize what's outside our control means we don't see that the problem is bigger than we are. We take on more responsibility than is rightly ours. And this causes us to suffer even more.

A single mom of two, whose children both have developmental delays and numerous psych diagnoses, also wrote to the woman of the depressed man. This woman's teenage daughter has had suicidal thoughts daily for over two years. She offered this insight:

Pain x Resistance = Suffering 

Wishing fiercely that we didn't have the problems we do, or denying they're as bad as they are, or getting angry that this is happening only multiplies our suffering. The more we fight reality the harder it is. And it's hard enough. Really.

*        *        *         *         *

A few weeks ago Big Guy and I were coming home on the train and he flew into a rage. He stomped off down the car with the black scowl that I recognize as the physical marker of his entry into a will-we-need-to-call-911 mood. I let him alone, knowing that anything I said would feed the dragon. There are times when the best thing you can do is step back; doing nothing is better than making matters worse.

Ten minutes later we had to change trains, and Big Guy got off at the other end of the car and strode fiercely out of sight. I reminded myself that technically there was no reason he had to travel with me: he's 15, old enough to get home on his own. But when I arrived at the other platform and glanced around, he wasn't there. For a variety of reasons I decided he was probably somewhere nearby and didn't want me to see him. After a few minutes I spotted him pacing further down the platform.

I waited out of sight, wondering what state of mind Big Guy was in. Was he calming himself down, or had he accelerated into despair? I didn't know. And then it hit me: If he tries to fling himself in front of a train, I cannot stop him. He is bigger than I am. He would take me with him.

I inhaled sharply and let the thought sink in. I felt the overwhelming weight  and piercing pain of it. And then I felt the freedom of it, too: It's not up to me. It is not up to me.


For better or worse, the size of the problem was bigger than I could solve. I had to own the part I could own, and let go of the (bigger) part that I could not. And as I grasped this the train came in.

Thankfully, there was no screeching of brakes.

.

Finding composure

Big Guy and I are supposed to leave tomorrow morning to visit Eldest. Her choir concert is Saturday evening -- they're singing the Faure Requiem -- and since Big Guy has never been up to see Eldest at school, it seemed like a good thing to bring him along.

Tonight I'm not sure if we'll be able to go. Big Guy is working very hard to make it impossible. He has been doing well the past month, better than we've seen him in a long time. Tonight he had a minor disappointment, and he refused to move beyond it. If I told you what caused it, and how many hours of drama ensued, I guarantee you would not believe me.  In fact, you would be appalled.

When Big Guy is in the throes of feeling bad, he compulsively wants to feel worse. Unfortunately, he has a  compulsive need to make other people miserable, too. And he's very resourceful.

Ina crisis like this I run through my mental checklist: safety first, don't react, breathe deeply, pray silently. It is hard, hard work to let the outrageous provocation slide off for half an hour, an hour, two. I make mental notes on every hard object that could be thrown, every semi-valuable that could be intentionally damaged. I casually find my cell phone in case I need to call 911. I make sure the other children are safe: "Don't feed the monster," I say quietly to Little Guy, "Go into another room and ignore everything he says. Don't respond to anything." (Later, when I see Little Guy curled up in a ball on the sofa, head under a blanket, my heart sinks: he doesn't feel safe. I tell him gently to go sleep in my bed, and he eagerly complies.)

Eventually, some time after 10pm, Big Guy wears out. I am glad; you never know which way things will go. He (or we) could have ended up in the ER.

I sit on the sofa with my head in my hands, praying and thinking and suppressing the fear that we are back where we used to be. Andrew and I talk quietly about what has happened. We agree that we need a new plan, because we cannot allow this to occur again. But we're too worn out to think of one.

I get in my pj's and climb into bed. Little Guy is sleeping peacefully. I inventory my whole day, so that I can keep the past few hours from being my sole memory. I remember that I awakened at 5:30 in a state of surprising hope and optimism. I had cornbread made and laundry in the wash before 8am, we did our homeschooling, and I worked on a piece for which I had an afternoon deadline. I took a break from writing to put up Dancer's hair for ballet (she can do it, but she likes me to do it anyway). I brought the younger ones to play rehearsal, and raced back to finish my writing piece.

I am suddenly intensely grateful for the surge of hope this morning; I am not sure I would have made it through the evening without that buoy. I am glad the laundry is done. I think of all the good things, including seeing six stars over the river this morning, a veritable galaxy in the skyglow.

Before heading to bed I open the door to Big Guy's room. He stirs, so I know he's awake. "Good night," I call quietly, and then take a deep breath and add, "I love you."

Big Guy rolls over. "Good night, Mom. I love you, too."

I let the day close as it began: in the dark, with hope, and no real knowledge of what lies ahead. It's enough.

Love That Dog

A boy and his dog, with Dancer taking pix

I ran into a friend last night, the dad of one of Dancer's friends, whom I haven't seen in perhaps six months. I was heading out to buy milk and eggs around the corner; he was parking his car in front of the school across the street. We chatted on the sidewalk, updating each other on our lives. I mentioned the recent acquisition of Amsterdam, and my friend gaped and said, "Really?" I could see him doing the mental math: another large body in the apartment, more food, extra responsibilities. On the surface it's insane. Then I mentioned how much Big Guy loves dogs, and how therapeutic having one is for him. Light dawned, as the full mental math problem became clear: all those negatives are more than outweighed by the positives.

You may recall that last year when Big Guy was at the residence he had a problem with falling asleep in school. I'd tried to institute a Big Cookie test to get a read on the nature of the problem: was it physical? emotional? possible to overcome with great effort? Unfortunately, too many elements were out of my control at the time to do a good job of it. But when Big Guy moved home in September, we made a deal: if he put in good effort at school and stayed awake in his classes, at Christmas he would get a dog.

Yeah, I know it's not Christmas. But Big Guy is doing his share, and I wanted to start the adoption process early, because I knew it most rescue operations require a home visit and reference checks and applications. And most of them are run by a handful of volunteers, who have limited time to get around to doing all that needs to be done. Plus, given the preponderance of pit bulls in the shelters here -- a breed not on my list of possibilities for adoption, since wannabe drug dealers get them in order to look cool, then give them up -- I figured it might be some time before a gentle, therapy dog-type dog would pop up.

So I started early. I asked on our local parent listserv (pop: 1200+) for referrals to quality rescue groups, and one of the responses I got was to a place where I distantly knew someone on staff. That group had just gotten Amsterdam, and I knew at a glance that he was the dog for us. What I didn't know was that the long-ago connection with the staff person would translate into overnight approval. And so we went to meet Amsterdam on Friday, and brought him home Saturday.

As I write, at 7am, Big Guy is out taking his dog for a walk. I can't count how many times he's said to me this week, "Mom, he's a really good dog." To which I reply, "He's a great dog." And he is.

There is something wonderful about having someone who's happy to see you every time you walk in the door. There's joy in starting the day getting whacked by a wagging tail. I know the dog walking will get harder to do when it rains or snows. But for right now, life is good. Very good.

Brothers

My boys are playing together tonight. The narrative arc tends toward the violent and the absurd, but perhaps what's most absurd is that they're playing with... bells.

These are my grandmother's antique brass bells, shaped like figurines. I played with them as a child. Fortunately, they are practically indestructible. Tonight one of those girl-shaped bells is Prunella, and another is a governess. The plot has involved bombs and explosions, a crashing elevator, confused identities, mobsters and a couple of murders. You know, normal boy stuff.
 

It's good when brothers play together in peace.

Big Guy update

Big Guy goes through periods (sometimes for an hour, sometimes an hour a couple times a day, sometimes not at all) when he has intense feelings. Things that might make someone else a bit cranky feel catastrophic to him.  What (to me) is a twinge of disappointment is like heat on a raw nerve for my son. And like someone in extreme pain, he is too lost in the feeling to articulate anything. Embarrassment, regret, annoyance, and fear all trigger his fight-or-flight reflex. He becomes a vortex of emotion, sucking everyone around him into his reaction.

It is labor to get Big Guy out of the house, but he needs exercise and conversation and new experiences. We plan outings for him which he agrees to, and then he utterly refuses to go. He has been unhappy lately that his younger siblings have activities (soccer, birthday parties, play dates) when he feels like spending time with them. Then when they come home they are tired, and don't necessarily want to do what he wants to do. He is too anxious to try activities where he might make friends with similar interests. He finds kids his own age scary.

Big Guy has no things he likes so much that they can be used as either carrot or stick. When he starts to blow, sometimes he responds to a firm, assertive voice. Sometimes that makes him angrier. Sometimes he responds to statements like "You seem upset"; other times that makes him more upset. When he is in the midst of a wave of feelings, reason is ineffective. It's... challenging.

It is important to know when to back off. I have planted a red flag in my head that waves whenever we hit the point that anything I do only causes things to escalate. For it's a fact of parenting -- anyone's parenting -- that even when Mom can't make things better, she can always make them worse.

I do not always see that red flag waving, but I have gotten better at it with time.

Big Guy is big. He is 180+ pounds of 15-year old. I am not afraid of him, though I know he will hurt me if he is angry enough. And so life here is a constant measuring act, gauging where he is with his feelings, trying to provide trust and support while keeping people safe.

*       *         *        *        *

How does one teach a young child to stand up for himself/herself in the presence of someone like Big Guy? It's a question the professionals can't answer. They can't tell me how an adult can consistently manage Big Guy's meltdowns effectively, either. 

Little Guy has been showing OCD-like symptoms this weekend. I told him it's probably his body's response to anxiety. That helped; it is hard, when you are seven, to understand that weird feelings in your body are signs of stress.

*       *         *        *        *

I know that Big Guy is struggling right now because he has to hold himself together at school. New situations are hard on anyone, and they are especially hard for my son. He has new teachers, new classmates, new subjects, a new routine, a new school, a new social worker. Soon he will have a new psychiatrist.

It is 'safer' to fall apart at home, where he knows people love him, than it is to fall apart at school. Safer for him, anyway.

*       *         *        *        *

Andrew asked last night, before we fell asleep, "Do you ever think about what will happen longer term?" Yes, I do. I think about possibilities and probabilities, and then I go back to today. Today is the day I can do something about. Today is the day I have been given to love my child. So I'm going to try to do that.

Lessons learned from IEP meetings

I went to Big Guy's follow-up IEP meeting last week. An IEP is the legal document that outlines what services and accommodations have to be provided to a child with special needs. (If you have a special needs child, visit the Wrightslaw web site. It is great for learning how to advocate for your child.)

Big Guy has had an IEP since he was in 5th grade. Since he will be switching schools in September it needed to be modified. We'd already done the big meeting; this one was to confirm tweaks needed for the new school. I seriously considered doing it by conference call instead of riding the train for an hour to wait for 30 minutes for a 30-minute meeting.

But I went. And as I was scanning the final document (which hadn't been provided to me in advance) I noticed that two major accommodations had been omitted. I'd been told that only X and Y would change, and here E and T -- critical things -- had vanished. Nothing said, nothing explained, just gone. 

So I pulled out my draft copy, smiled as gentle a smile as I could muster and said, "For some reason E and T didn't make it onto the final draft. Should we write them in by hand, or does it have to be re-typed?" And the woman from the special ed committee looked momentarily flustered, but said we could write them in by hand.

I wouldn't have known those items were missing if I hadn't been there, or if I hadn't practically memorized the draft. Whew.

*        *        *        *         *

If you ever go to an IEP meeting, you need to be prepared to have superhuman patience and unflappable good will. It is good to bring a notepad. If you're asking for anything major, it is good to bring a man. (Balk if you wish, but even a silent male changes the group dynamic. Having a dad-figure in the room keeps them from discounting the case by assuming the child has an over-emotional mother.) You can bring someone else as an advocate, too.

If you ever go to an IEP meeting, read everything. Take your time. Did I say you need patience? Yes, you need it so that when you point out that the text calls for a one-to-one aide for your child for safety reasons but the service isn't actually listed, you do not commit a crime when someone says, dismissively, "Oh, but that takes a lot of paperwork to put in place!"

Because you have planned to be patient you can nod and say, "Yes, paperwork is annoying! But this is needed for safety, so it's certainly worthwhile filling out the forms. Because none of us here would ever want to look back and say, 'If only I'd done that paperwork, this child might still be alive today!'"

And then when the person counters with, "Oh, it's really a ton of paperwork!" you can nod sympathetically and say, "Sometimes the important things take time."

*        *        *        *         *

 

If you get upset while fighting for services for your child, it helps to remember that you also get upset about deficit budgets and runaway school board expenses. The people who are saying no have a two-part job: they are trying to get kids the services they need and keep costs manageable. This may conflict with your desire to provide your child with the best services possible. 

Accommodations are different than services. Accommodations don't cost anything, so they're easier to add to an IEP. They include things like extra time for tests, providing homework assignments online, reduced homework, having a place/person to go to cool down, etc. If your child has a diagnosis of anxiety or ADHD or a physical problem you can get a 504, without going through the IEP circus.  

If  the school system needs to pay for services (OT, PT, an aide, assistive technology, a specialized classroom or school), then you need an IEP.  A 504 is not a legal document, and some teachers may not comply with accommodations that they find inconvenient. Again,

Some won't comply with an IEP, either, but it's the law. The Wrightslaw site has a terrific section on how to write effective letters, and how to document things appropriately so that you get better results. If you read only one page on the site, read this one.

When better is different from well

Big Guy will be released from the hospital tomorrow and return to his residence. The doctors feel he has stabilized. We asked about changing his meds, but were told that when he is older he will master the art of self control. 

 Do I believe that waiting is the best we can do? Do we have a choice? Do we have enough time before he is legally an adult to take that approach? This is not the hospital's problem; he is no longer a danger to himself or others, and so their job is done. Ours remains.