The Same But Different Just another weblog Fri, 25 Apr 2014 13:55:33 +0000 en Constructive Procrastination Fri, 25 Apr 2014 13:55:33 +0000 Susan Wagner I’m running a half marathon on Sunday. I really shouldn’t be; I haven’t trained for it, and the weather forecast is horrible (hot, humid, windy, rainy). And yet, I am stupidly excited about the whole idea of getting up at 4:00 am to run 13.1 miles, including a long painful uphill stretch that will most likely be straight into a driving headwind.

Also? There’s a chance of thunderstorms. And yet, I’m still excited. Which probably says something about how things have been going around here.

This has been a hard school year, for a lot of reasons, and the worst part fell just as I was starting to train for this race. A stretch of terrible polar vortex-induced weather kept me off the roads and on the treadmill, which is frustrating because I’m not someone who can run long miles on the treadmill. But at least I was running. That is, until I wasn’t.

See, the treadmill is at my gym. On the days when everyone went to school, I would stop on the way home and run. But we had a lot of days this winter where Henry didn’t make it to school, and leaving him home alone to go work out just wasn’t an option.

(When I say that Henry “didn’t make it to school” I mean exactly that: He was completely unable to get himself together to go to school. If you don’t have a child like Henry, you are probably shaking your head in bafflement at this point — and also maybe judging me a little — because why can’t the boy go to school? Just make him go to school! I can’t explain it; some days, he just cannot find it in him to get dressed and show up for class. Of course, if you are raising your own Henry, you read that and started nodding your head and looking for my email address so you could reach out and say GOD YES! US TOO! SOLIDARITY, SISTER!)

So between the weather (stressful) and the boy (more stressful), I essentially stopped running. Instead of logging my usual 30ish miles a week, I was down to 10. Or 5. Or, in one particularly bad week, 0. It was awful.

The awful took on a lot of forms. I felt physically terrible, both because I wasn’t getting enough exercise and because running is how I manage my anxiety. Not running meant that I was also not sleeping, which meant that I was exhausted. On top of all that, I was fighting a nearly constant feeling of dread in my stomach because things were going so very wrong so much of the time.

Not running meant that there was no block of time each day that was not focused on my kids or my job. I got up in the morning, got everyone out of bed and fed and dressed and off to school (God willing) and then came home and worked until it was time to pick the kids up. After school was a blur of sports practices and homework, until I fell into bed and slept like the dead.

But only for a couple of hours. Then I was awake worrying about everything.

I was constantly behind at work, because on the days that Henry didn’t go to school, it was hard to stay focused and get things done. And of course the days he stayed home were the nice weather days, when it would have been easy to run outside. When he would go back to school, the weather would turn or work would pile up and taking the time to run would just be impractical. Or I would be so exhausted from not sleeping that going for a run would seem foolish.

Running started to seem frivolous; it felt like an excuse to procrastinate the things I needed to get done, rather than something important in its own right. I needed to work; I needed to get Charlie to practice; I needed to help Henry navigate the world. I don’t need to run.

At the same time, we were wrestling with Henry’s propensity to procrastinate anything and everything that is stressful for him — in this case, his homework, particularly big projects. And there are a lot of big projects in middle school, let me tell you.

In my effort to model good time management for my kid who has no sense of how to manage his time, I let go of the one thing that helps me to use my own time efficiently. When I stopped running, everything else fell apart for me. Getting back the hour and a half or so each day that my run takes didn’t free up an extra 90 minutes for other things; it slowed me down so much that nothing got done. And on top of that, I was constantly resentful of every demand on my time and energy.

It was so ugly, you all. And so miserable.

A few weeks ago, the weather finally took a turn for the spring-like and I started running outside again. A friend who was training for Sunday’s half marathon started bugging me about coming back to our running group. Two weeks ago, I ran 13 miles with her; last week, I ran 10 on my own.

Henry had two papers to write this week; both had been assigned months ago, and he left both until the last minute. He finished one and is turning the other in next week, for a late grade. I’m a little sad about that, not because his grade will be lower but because I feel like I dropped the ball on this assignment by not staying on top of his due date and working with him to get it done.

I’m back to my 30+ miles per week, which is 30+ hours away from all the other things on my to do list. I’m still having days where I scramble to get things done and nights where I don’t sleep well, but I’m less resentful when Henry — or anyone else in my house — needs my attention or my help.

Sunday’s run will be brutal. But it can’t be worse than the last few months have been here. Maybe that’s why I’m so excited.

The Reading Hour: Why This Childhood Ritual Worked For My Kids Fri, 18 Apr 2014 15:37:53 +0000 Susan Wagner The first thing the doctor tells you when your child is diagnosed with ADHD is that structure and consistency are incredibly important. In our house, this translated itself into specific family rituals that were designed to keep everyone focused and calm and functioning. Like reading together as a family.

When my kids were little, bedtime was a big deal. I had read somewhere, after Henry was born, that it was crucial that the baby have a consistent bedtime routine, every night, although I can’t remember now what that was supposed to do. (Promote good sleep? Maybe, but Henry was a terrible sleeper, always, despite all the routines in the world.) Bedtime was sacred at our house. And an important part of the bedtime routine was reading.

My husband and I are both big readers; we just took for granted, from the beginning, that our kids would be, too. We have always had books in our house, and one of our favorite family outings is still the bookstore. When the boys were very small we read picture books — our favorites were the now-out-of-print “Toot and Puddle” books, about two pigs who lived in rural New England. As the boys got older, though, we started reading bigger books, and we quickly learned that many of the chapter books for young readers are terrible. My kids loved the Magic Treehouse series, and while I appreciated how well-researched they were, the bad writing was painful to me. Too many incomplete sentences. There had to be something better.

When Henry was in kindergarden, I found my old Nancy Drew books in a box in the attic. We had finished three of them before Henry started to ask why Nancy didn’t just use her cell phone to call the police; I explained that these stories predated cell phones and computers (and Miranda rights, too, apparently). He was baffled. We tried reading my father-in-law’s Hardy Boys books but the kids couldn’t understand the slang so we gave up.

My husband has always been really good at finding books the boys will like. He’s the one who discovered Harry Potter and Percy Jackson and the Spook’s Apprentice series, which scared Charlie (although Henry loved it). Most recently, they’ve been reading their way through the Hero’s Guide to Saving Your Kingdom series; Wade does different voices for all the characters and the three of them laugh and laugh together.

And yes, we’re still reading to the boys, even though they’re in middle school and both read at a high school level. This summer the boys and I have talked about reading “The Book Thief” together, because we’re all interested in it. Both boys have warned me that it’s sad (they’ve heard from other kids at school who have read it) and we’ve talked about how any novel about Jews in World War II will probably not be a happy book. I suspect that, left on their own, neither of them would actually read this particular novel; I would also most likely skip it. But together we can get through the sad book.

We read to the boys for a lot of reasons. It builds their vocabulary and teaches them to love books, for one thing. When they were little, we wanted to be sure that reading was fun and that they were never intimidated by the idea of turning off the screen and curling up with a book. These days, both of my kids will happily read on their own; I don’t worry about that at all. So why are we still sitting down before bed to read together?

Reading gives us a chance to talk with the boys about things — about issues that come up in the books, for example, or historical facts. Henry got interested in Greek mythology when we read the Percy Jackson books; the Spook books had him asking about the Catholic church and witches. Reading together is also a way to expand their vocabulary, which is always fun. I will often come in the game room at night and find the boys crouched together over a dictionary, looking up an unfamiliar word from their book. Nothing wrong with that.

Reading is also still a ritual in our family, although it’s one that is harder and harder to fit into our schedule. Henry will ask, in the evening, if anyone is going to read before bedtime — for him, this half hour or so of reading is a time to gather himself and get ready for sleep. It can be hard for him to unwind at the end of the day, and his go-to strategy is always video games. But too much screen time, or screen time too close to bed time, messes with his sleep; reading is a break from the screen, a time to unwind and slow down.

When we read together before bed, Henry is calmer and less agitated than when he goes straight from homework or video games to bed. And even though we know that, we often find it difficult to work that into our nights. Charlie has baseball and basketball practice in the evening; it’s often 7:00 pm before he gets home, and he has to eat and shower and sometimes finish his homework. Game nights are even worse; a 7:30 baseball game doesn’t end until nearly 9:00, and the fields are a good 30 minute drive from our house. We don’t worry too much about Charlie; he’s always been our kid who could lay down in bed and go directly to sleep. But Henry is missing out.

Wade and I are on the fence about the nightly reading. In one way, we’re ready to give it up; the boys are getting older and it’s hard to find books they will both enjoy. And we’re so busy already that taking one more block of time each night to read a book just feels overwhelming.

But I also miss it when we’re not reading together — I miss that time as a family, when we’re all laughing about something or looking up words or working together to understand a concept. It’s hard for us to find those moments of togetherness and I don’t want to lose this one. But I also know that the reading together days are probably coming to an end, which makes me a little sad.

Are your children outgrowing their childhood rituals? Are you replacing them with something new?

No Excuses: Explaining My Son’s Disability Fri, 11 Apr 2014 19:33:43 +0000 Susan Wagner I spend a lot of time explaining Henry’s disability to people — teachers, coaches, other parents. I try to do this proactively, before there is an issue or a problem, because I want to be sure that everyone understands that I’m not making excuses for him. He occasionally needs specific accommodations in order to succeed, but beyond that, I don’t want anyone letting him off the hook just because he’s different.

But it can be hard to distinguish an explanation from an excuse, and Henry and I are both having to work to see the difference.

The summer before sixth grade, we took Henry back to the psychologist who initially diagnosed his ADHD (when he was five) for another round of testing. This time she gave us a slightly new set of labels to work with: generalized anxiety disorder, disorder of written expression (or dysgraphia, if you’re old school like I am), ADHD (again) and sensory processing disorder. Taken together, she told us, it added up to Asperger syndrome, and she gave us some recommendations on ways to talk with Henry about being an Aspie, as well as resources and strategies for helping him connect with other kids like him.

We had known two things going into this round of evaluations: the first was that we would need to talk with his teachers about his quirks and how they affected his ability to function at school, both socially and academically. The second — and in our minds, the more difficult — part was going to be talking to Henry. Because the last thing any kid wants to hear, particularly in middle school, is that he’s different from his peers.

We had already talked with Henry about his ADHD. When he was in third grade, my husband read “The Lightning Thief,” the first of the Percy Jackson and the Olympians books to the boys. Percy, the main character, has trouble in school; he is dyslexic and has ADHD. Of course, it turns out that he’s really a demigod, the son of Poseidon and a human woman; his dyslexia comes from a natural inclination to read Greek, rather than English, and his ADHD is a sign that he’s hardwired for battle, not for sitting in a middle school classroom. Either way, the novel gave us the opening we needed to talk with H about his own ADHD and how it affected his brain and his behavior — and how, while that made him different, it wasn’t necessarily a bad thing.

While Percy Jackson was an easy way to open the discussion about ADHD, there aren’t any wildly popular adventure novels for tweens that focus on demigods with anxiety and poor social skills. So we just had to plunge ahead and figure this one out ourselves. I eased my way in by talking with Henry, early in the school year, about his handwriting; I told him that his English teacher had given him permission to type his vocabulary homework rather than requiring him to write the words and definitions and sentences by hand. We talked about why his handwriting was so bad and why writing was so hard for him. “You’re not lazy or sloppy,” I told him, “your hand and your brain don’t communicate properly. It’s a neurological condition. It doesn’t have anything to do with what kind of person you are.”

“So I just can’t write neatly?” he asked.

“Right,” I told him. “But that doesn’t mean you can’t do this work. You just need to do it differently from the way everyone else is doing it.”

In other words, accommodations were important, but excuses would not be accepted.

For Henry, middle school has been all about figuring out when and how to ask for help. I want him to understand that there will be times when he needs to ask for special accommodation — for a alternative assignment or an adjusted due date or extra time on a test. Sometimes this is an easy thing to do: He types all of his English and literature homework now, rather than hand writing it (although often that means that he dictates and Wade or I do the actual typing, because he’s still nervous about the keyboard). We’ve talked with his teachers about having him take essay tests in the computer lab next year, rather than writing them out longhand in class. He wants his own laptop, and we’ve told him that as soon as he can type proficiently, on his own, we will get him one. I’ve found typing tutorials he can do this summer, and he says he’s ready to start working on them.

But managing his dysgraphia is only one piece of the puzzle. This winter, Henry struggled with an assignment where he had to read and summarize slave narratives; no matter how many times the teacher and I talked it through with him, he was unable to do it. In the end, he took a zero for the assignment, without complaint, although it clearly didn’t make him very happy.

Later, when I told our therapist about this, she reminded me that Henry struggles with pragmatic language. He’s not able to draw out the salient points in a conversational narrative like the ones he was assigned. He wasn’t being stubborn about the assignment — he honestly couldn’t do it. This was a case, she told me, where I should have asked for an alternate assignment. Instead of summarizing the narratives, she said, he could have looked at the cargo lists from the passenger ships and written about those. That kind of factual document — how many humans, how many animals, how much other cargo — would be easy for him to understand and make sense of, unlike the verbatim stories of the slaves.

That had never occurred to me, honestly. I know that there are things Henry struggles to do, but I am extra cautious about making sure he never uses his disability to get out of anything. There is a fine line between explanation and excuse; while I hope he is learning to explain how and when his neurological differences make it necessary for him to ask for accommodation for some tasks, I do not ever want to hear him say that he cannot do something because of his diagnosis. And so far, he hasn’t. But I’m learning that sometimes, he — and I — need to do just that.

Making this even more complicated is the fact that we’ve had to learn to recognize the everyday things that Henry cannot do because of his disability. His anxiety makes travel almost impossible; his ADHD makes it hard for him to plan ahead. His room is a mess, he only eats ten foods, he does not like new places. We have come to understand that things that seem simple to us are sometimes overwhelming for him, and we make allowances for that. But it can be difficult to explain to people who are not familiar with Henry and his issues without sounding like we’re making excuses, for ourselves and for him.

What strategies do you have for explaining your child’s disability to other people? How do you handle it when other people clearly think you’re just making excuses?

My Communist Approach to Kid’s Homework Fri, 04 Apr 2014 18:53:52 +0000 Susan Wagner My Motto: “From Each According to His Ability, to Each According to His Need”

I like to believe that I don’t ever help my kids with their homework, although that’s only half true and really depends on how we are defining “help.” I never cross the line into actually doing the work for them or telling them the answers, although the temptation is often there, particularly at the end of a long day or a long project or both.

But I always resist. Because, as I like to remind the boys, this is their homework, not mine. I’ve done middle school English/math/social studies/whatever and I’m not required to do it again. Thank goodness.

But that doesn’t mean I don’t help at all. And it doesn’t mean that I offer both kids the same kind of help.

Last week, I helped Charlie memorize the preamble to the Constitution. My help consisted of two specific things: finding the Schoolhouse Rock video for him on YouTube and listening to him recite the whole thing over and over once he had learned the words. (I also encouraged him to sing it for his teacher, rather than simply reciting, but he had no interest in that, which is kind of a bummer because how awesome would that have been??? So awesome.) My help was so minimal, in fact, that even he didn’t realize I was helping, which is exactly how it should be. For him, at least.

This week, I helped Henry pull together the outline and bibliography for his English research paper on China. In this case, helping meant assisting him to find his note cards (which were under his bed and no I do not know why or how they got there), high-fiving him for doing his own typing and then sending him to bed when he came and laid on the floor and moaned about how he was too tired to add the page numbers. And then, in the morning, I typed his bibliography for him because of course he forgot to save it the last time he typed it and honestly, I had too many other things to do to manage the panic attack he would certainly have if he’d had to type it himself at 7:00 am. Because in the end, helping Henry with schoolwork is all about picking the right battles — for him and for me.

My approach to homework help can be summed up in the words of Karl Marx: “From each according to his ability, to each according to his need.” While I am more than able to manage middle school academic work, my kids each have different needs when it comes to homework assistance. And so I tailor my “help” to the specific child rather than the work he is doing.

Charlie needs very little help with his schoolwork; at the most, he will ask for a sounding board, to verify his answers or double check that he’s done everything. On the whole, though, he wants to do it all himself, which means that instead of lamenting about a project he just goes and does it. This week, at a late night baseball game, another parent asked me if he had finished his book report and I nearly had a stroke because WHAT BOOK REPORT THERE IS A BOOK REPORT I DIDN’T KNOW ABOUT THE BOOK REPORT OMG WE WILL BE UP ALL NIGHT DOING THE DAMN BOOK REPORT!!! But when I asked Charlie, he said, “Mom, I’m done. I worked on it at school.” And then he added, “I mean, she assigned it like three months ago. Why wouldn’t I have it done?”

Well, honestly, because your brother wouldn’t. That’s why.

Henry is a procrastinator. He will wait until after dinner to start his homework and until the last day to start any big project. This makes me crazy, even though I totally get it: I also procrastinate things I am anxious about, despite knowing all too well that this approach only creates more anxiety. My goal this year has been to let go and let God when it comes to homework — if he’s not going to crack a book until 7:00 pm and if he’s going to take a 20 minute break after every 15 minute stretch of work, then he might still be doing homework at bedtime. Whatever. It’s his grade, not mine.

But how about that bit where I admitted to typing his bibliography for him? Doesn’t that cross my imaginary line between helping and doing it for you? Yes it does, and I can say with certainty that I would never do that for Charlie. And not just because he wouldn’t let me. Henry has a specific set of things he struggles with, and typing is one of them. He’s a mediocre typist at best, and when he’s panicking, he’s a mess. But because of his dysgraphia, it’s better if he types pretty much everything. And so, more often than I would like, I wind up sitting at the keyboard taking dictation from him. And while I will not find the words for him, I will transcribe what he tells me to write, and then he will edit it and finish what would otherwise be an unfinished paper. Every time.

In the end, it’s just like Marx said: I have the ability, he has the need.

I see homework as an opportunity for my boys to learn about learning. Charlie has figured out how to balance his time and how to follow directions and how to stay organized; Henry is discovering when and how his various issues get in the way of his academic work. They need very different kinds of assistance during the homework hour, and I’m able to provide it, even though I still maintain that I am not helping with the actual homework.

Do you help with homework? If so, what’s your definition of “help?” And do all of your kids get the same type of help from you, or are you tailoring it to their specific needs?

The New Mom Motto: What’s the Worst That Can Happen? Mon, 31 Mar 2014 14:07:13 +0000 Susan Wagner I have a new mantra these days: What’s the worst thing that can happen? I ask myself this all the time, in moments where I am getting overwhelmed and stressed out, and I use it with both of my kids. And no matter what the situation, the answer is rarely anything of real consequence.

What do I mean by that? Here’s an example: Henry loses things, all the time. Most frequently, he loses his schoolwork. Assignments disappear into his backpack or his binder or his cubby and show up on the weekly grade report as zeros. Until recently, he would completely fall apart when this happened because those missing vocabulary cards meant that he would fail English which meant that he would fail seventh grade which meant that his life was ruined and why couldn’t I just leave him alone?!?

That was always fun.

And then one day he was frantically searching through his things for a paper he had lost and starting to flip out and Wade said to him, “If you don’t find it, what’t the worst thing that will happen?” Henry started to yell about failing out of school and Wade said, “What is your grade right now? What will a zero do that that grade, mathematically?” And Henry stopped yelling and did the math and said, “Huh, so if I get a zero on this I’ll still have a B in the class.”

“Right,” Wade said. “That’s the worst possible thing that could happen. Your grade will go from an A to a B.”

That moment changed our whole family.

We ask the kids all the time now when they are getting overwhelmed or stressed out: What’s the worst thing that could happen? For Henry, it’s almost lways about his school work because that’s the most tangible thing he deals with. He forgets books and loses assignments, but he’s so smart that he is able, for the most part, to make up for the zeros on homework and in-class assignments with high grades on tests and projects. And because Wade and I have realized this, too, we have stopped helping him organize his work, because the worst case scenario is that he gets Bs — or occasionally a C — on his report card instead of all As.

(The bigger lesson for us this year has been that while Henry is intellectually able to get all As, his various issues — the anxiety, the ADHD, the terrible social skills — make it nearly impossible for him to do all the things that he’s asked to do in order to earn an A in each class. And if the worst thing that happens is that he gets a C every once in a while, then we can live with that.)

Taking this approach — spinning out the real worst outcome of any situation — has not only lowered everyone’s stress level, it has also compelled both of my kids to take more responsibility for things. This week, Henry came home and said, “Mom, I forgot to take my math book to class today, so I got a zero on the in class problem set.”

“That’s a bummer,” I said.

He sighed. “I know, and I promise that tomorrow I’ll remember my book. But I understand this unit and I know I can do the problem sets.” Because the worst thing that could happen, he knows, would be not to learn the material in this unit and to fall behind in what he’s learning. Missing one problem set because he was disorganized isn’t a big deal — unless it affects his ability to understand the whole lesson.

For Henry, every situation is a possible worst case scenario; every interaction has the possibility to go horribly wrong, both in his head and in real life. Asking him to step back and actually articulate what might happen is helpful because often, he can see that the thing he fears is not likely to come to pass. Losing one assignment will not mean he fails the entire year.

Every time things go off the rail at our house, I stop and ask myself: What’s the worst thing that could happen? So Henry doesn’t go to school today — what’s the worst thing that could happen? He will fall behind in class. I will have to run on the treadmill instead of outside. We will eat leftovers for dinner. No one will die or file for divorce or…whatever the alternatives are. Because I have also learned that while we fear the worst, we don’t really have any idea what the “worst” thing would be. Realizing that makes it easier to take a deep breath and move forward and just deal with whatever is going on.

I don’t love that my life is a series of nearly-worst-case scenarios; I don’t enjoy it, and I would do just about anything to change it. Then again, I suppose I’m working on changing it, by teaching Henry — and Wade and Charlie and myself — to focus on what’s going right, not what’s going wrong, and to own the most horrible possibility. Because really, in almost every case, the worst thing that can happen is not all that bad.

Why “Fear” is My Co-parent Fri, 21 Mar 2014 12:19:25 +0000 Susan Wagner When I was little, I would occasionally have a nightmare. My father would come in to my room and bring me a tiny Dixie cup of water. He would tell me, very seriously, that this was Magic Water and it would take care of the bad dream, but I had to drink it all for it to work. (I’m sure that was just to stop the crying — kids can’t drink and cry.) He would sit on the side of my bed and talk to me about what we were going to do the next day or some other mundane, unscary thing. When I was done with the Magic Water, he would tuck me in and kiss me on the head and say goodnight.

And it worked, every time.

My friend Rita made monster repellant for her kids when they were small; she took a spray bottle and filled it with glitter and confetti and before bed, her preschooler would go around the upstairs of their house and spray anywhere he thought there might be monsters lurking. He was very serious about it, and like the magic water, it worked to keep the scary things at bay.

These days, my kids are big and the scary things don’t respond to magic water or glitter spray. Instead, it takes therapy and anxiety medication to get us through the day. Although maybe that’s the same thing.

I never realized what a big part of parenting fear would be for me. I like to have all my ducks in a row, all the time, but ducks are unruly and they don’t like to stay lined up; they go where they want to and won’t always cooperate. Children are the same way, even the good ones who, for the most part, don’t cause anyone any worry — there’s always some monster lurking out there that needs to be managed with glitter spray and a shot of magic water.

When Henry was a baby, he had trouble breathing, and I used to go check, multiple times a night, to be sure he was still filling his lungs with air on a regular basis. These days, it’s Charlie who will sleep so late on the weekends that I become convinced he’s dead, when really he’s just having a growth spurt and needs all the sleep, all the time. But even those fears seem small compared to the things that wake me up at 4 am. What if Henry never makes friends? What if he fails out of high school? What if he never leaves our house?

(Now that I’m thinking about it, though, I don’t have any real fears for Charlie. Probably because he’s already got a good handle on his own monsters, or at least as much as an 11-year-old can have.)

My therapist has recommended that I not worry about anything more than 90 days in the future, which is brilliant and has honestly kept me from losing my mind this past six months when Henry was struggling to get his schoolwork done and get to school and not flip out about every little thing. But there are days when I cannot avoid worrying about the future because that’s the nature of raising children; you’re always looking forward and thinking about how to get them to the next part of their life without screwing anything up right now.

This week I filled out school registration forms for next year and, as always, took fifteen minutes to look ahead assess our tuition savings. Henry will be in 8th grade next year, which means that we need to start planning, financially, for high school. And so I found myself on the high school web site looking up tuition and the cost of the support services program for kids with learning differences and that led me to the list of requirements for application to the support services program which reminded me that we need to have Henry tested again this summer which got me worrying about what we would do if the school we have so carefully chosen says they cannot help him.

And then I had to put my head between my knees because I don’t know what I’ll do if that happens but the idea terrifies me.

Like so many of my parenting fears, this one is completely irrational. I’ve talked with enough people at this particular school to know that they will welcome Henry with open arms and help him learn to navigate high school. But it is precisely these kinds of worst-case scenarios that play through my head on a regular basis specifically because they’re not just crazy nightmares but real possibilities. And while I would love to cover them in glitter and call it a day, these are the things I need to be ready to face.

Because it could happen.

I have other fears about my children — and about Henry in particular. But I’m trying to follow my therapist’s advice and not dwell on them. I can’t necessarily avoid worrying about the more-than-90-days-away life events (someone has to make the appointment for the boy to get tested this summer, for example) but I can limit myself to the things that are close and deal with those.

Just promise me you won’t ask about our plans for college, ok?

How do you manage your parenting fears? Or are you able to take each day as it comes and not worry about the future?

The End of Family Vacation Fri, 14 Mar 2014 20:14:42 +0000 Susan Wagner Last summer, we went to New Mexico for a week, to spend time with my extended family. On the first day, Henry’s ear buds broke and we spend fully a third of the week trying to find a replacement pair that sounded exactly the same. This meant driving to a Best Buy store that was nowhere near where we were staying — twice. It meant managing the nightly panic attacks Henry had about how he was going to survive the drive back to Oklahoma City without his music. It meant borrowing a car from my parents so that we could split up during the day and give Henry a chance to unwind and recover.

It was not fun. At all.

We went in to that vacation thinking we had it all figured out. The summer before, we’d gone to Colorado with Wade’s family and had managed to have a fairly pleasant week. We’d planned lots of activities to keep everyone busy and built in lots of down time for Henry, to let him recover. The trip was a success, but it wasn’t at all what I would think of as a “vacation.”

In fact, it was kind of a beating.

When my kids were little, my friends used to joke that traveling with children was never really a vacation; it was a trip. Taking small people on the road is a lot of work — the packing and unpacking, the sleep deprivation, the new foods. But eventually, those little kids turn into big kids and travel gets to be fun and being away from home is restful and relaxing. A vacation, in fact! Right?

Not always.

Charlie is a good traveler; he can sleep anywhere and he will eat anything and he’s up for every adventure you propose. He likes the mountains and the beach, he loves museums and sporting events, he’s happy get his shoes on and go or just hang out and visit. Whatever you’ve got planned, he’s in. Every time.

Henry is — not surprisingly — a terrible traveler. Vacations come with too many variables for him. He never sleeps well and it’s a struggle to find things he will eat and while he’s enthusiastic about the idea of the activities, there are very few things that really hold his attention. His anxiety makes him edgy and unpleasant, and every vacation ends with a sad apology for being so stressed out.

After the trip to New Mexico, I told Wade that I was done with family vacations. Finished! Not doing that ever again! I cannot remember one time in the last five years when we have gone away as a family and it has not been stressful and exhausting. In 2008 we spend a week in Galveston, at the beach, and it was super fun. Since then, it’s been all downhill.

No more vacations for us. Not as a family, at least.

Next week is the boys’ Spring Break; Charlie and I are going to St. Louis for the men’s NCAA basketball tournament — just the two of us. Wade and Henry are staying home; they have a big weekend of movies and German food and video games planned. And honestly, I’m not sure who’s more excited, Henry or Charlie. They’re both getting their perfect vacation.

When I started planning this trip with Charlie, I worried that Henry would feel left out, that he would be angry that we were going to St. Louis without him, that Charlie was getting to spend four days with his cousins. I thought and thought about the best way to tell Henry about our plans. I tried to guess what would upset him the most — the fact that we were flying? the idea that Charlie would be with the girls? I braced myself for the inevitable outburst when he found out.

And then one night when we were having dinner alone (because Charlie and Wade were at basketball practice), I said, “Charlie and I are going to St. Louis for the basketball tournament. You and Dad should think about some fun things to do here while we’re gone.” And I offered to take him to New Mexico, by himself, this summer. “We’d have to fly,” I told him, “because it’s a long drive.”

“Maybe,” he said. “I’ll think about it.” And then he looked at me and said, “But what would we do in Albuquerque? And where would we stay?”

“I don’ know,” I told him, “we can think about it.”

He nodded. “Ok. Maybe.” And that was the end of it.

One of the hardest things to accept about Henry’s issues has been the way in which his anxiety cuts him off from trying new things. We’re starting to find ways to keep Henry protected and push Charlie out of the nest, at the exact same time, but it’s hard. Specifically it has meant giving up the idea that we will do things as a family — or at least that we will do big things. Instead, we make a point of having family dinner, in the dining room, as often as possible. We all pile into the game room at night to read together. We go to the movies or out for donuts. None of these things is even remotely like a vacation, but if the goal is to spend restful, relaxing time together as a family, this is a close as we get.

I see more one-on-one trips with the boys in our future. Charlie wants to go to Washington DC and the beach and Paris; Henry wants to play laser tag and see “Divergent” on opening day. It’s not at all the same thing, but it’s a way to connect with each of them, to share a little of their world. I’m looking forward to my five days in St. Louis with Charlie, and I’m hoping I can talk Henry into a long weekend at my parent’s house this summer, but I really do think that we are done with the big family vacation. Forever.

Have you given anything up to accommodate a child? Or are there some things — like vacations — that you just make work for everyone?

3 Things Not To Say To The Parents of a Special Needs Kid Fri, 07 Mar 2014 15:10:52 +0000 Susan Wagner

I’ve always been protective of my children’s privacy, largely because they go to a very small school. I’ve been extra cautious about what I tell other parents about Henry’s issues in particular, because I didn’t want anyone to judge him — or me. But when he started middle school, it became clear that unless we were honest about his struggles — with him and with the people around him — he wouldn’t get the right kind of help.

I tell people that he has an anxiety disorder; that’s the most salient part of his profile. And for the most part, everyone is kind and accepting. But a lot of the time, even the people who are going out of their way to be nice will say the wrong thing. They mean well, but they’re not being helpful. At all.

What should you not say to parents of kids with autism spectrum disorders? Here are three things to avoid — and two things we’re happy to hear.

He’ll grow out of it. Disabilities like Henry’s can be hard to process because they’re invisible — he doesn’t talk with a lisp or walk with a limp, so it’s hard to see that he’s not like other kids. Well-meaning adults will also say It’s just a phase and They all act like this. But the truth is that he won’t and it isn’t and they don’t, and dismissing his disability, even in a supportive way, doesn’t help him — or me.

He needs to sign up for [insert name of activity] — my kids loved it! I’m sure your kids did love track or drama camp or computer class, and I would really like to get my kid out of the game room and into something he enjoys, but he’s not able. And honestly, it makes me a little sad to hear, over and over, how much fun your kid has doing all these things when my kid cannot. Offering to share information about programs your kids have enjoyed is great, but insisting that I sign Henry up isn’t helpful.

I told my child he had to invite Henry to his party/the movies/whatever the kids are doing this weekend. While this is always well-meant, it is counterproductive. By middle school, kids have their friends, and compelling a tween or teen to socialize with someone he doesn’t particularly like isn’t helpful to either kid. Henry’s social skills are lagging but he’s smart enough to know when he’s being included only at an adult’s insistence — and it makes him edgy and anxious.

So what can you say? There are two things I’m always pleased to hear, in any context.

How can I help? Being a parent is all about helping out — I’m constantly driving extra kids to and from practices and games, feeding them snacks and supervising their homework. That’s the typical help that middle school parents offer each other. But I need a different kind of help with Henry. Sometimes it’s simple things, like keeping an eye on the house when he’s home alone; other times it’s more complicated, like not letting your dog inside when he’s visiting. But the offer of help is always welcome, no matter what the situation.

How’s Henry doing? It’s ok to acknowledge that Henry struggles; I always appreciate people who ask how he is and what’s new with him. And while I’m not necessarily going to burden you with a long story about his most recent meltdown or his latest quirky project, I will always be happy that you asked. I promise.

What are your favorite — and least favorite — things to hear from other parents?

Why My In-laws Don’t Get a Say In How I Parent Fri, 28 Feb 2014 15:31:45 +0000 Susan Wagner It takes a village to raise a quirky kid — or at least to keep that quirky kid’s parents from losing their minds — and my husband and I are fortunate: We have a wonderful support network of friends and family who are there for us, all the time. And while it would seem that there would be no down side to that, there occasionally is, particularly when we talk about people who are super invested in our son and his life, and who have strong opinions about how we should be raising him.

For example, the grandparents.

We’ve always known that Henry was different, but it’s only been in the last few years that we’ve clearly identified what is different about him and begun to find strategies that really work for him. When he was younger, we would talk with our parents about how hard it was to raise him and how much we were struggling. And they were always there with a sympathetic ear and a suggestion.

My mother-in-law thought we were just too hard on Henry, too strict, that if we would just relax a little, we would all be less stressed. My dad, on the other hand, recommended that we push him a little harder, make him do more things, challenge him a little more. Their suggestions, while always thoughtful and well-meant, often left us feeling even more defeated, because we had tried all those things and nothing worked. Clearly we were failing at parenting — everyone could see it, even the grandparents.

When Henry was diagnosed with generalized anxiety, it was like a light went on for us. All of his behavior suddenly made sense — and so did our failure to engage with him. Because of course, even though we wanted what was best for Henry, we were going about it all wrong. We needed to rethink the way we interacted with him, to acknowledge his anxiety and start helping him to manage it. This was going to mean some big changes for our family as well as for everyone who spent time with Henry in any kind of consistent way.

Our first step step was to talk with the grandparents.

We went to lunch with Wade’s parents and over barbecue sandwiches we told them what we had learned about our son. My in-laws listened carefully as we talked through the details of the psychologist’s report; they asked smart questions about medication and therapy. And then my mother-in-law said, “What you need to do is…”

And my husband stopped her. He held up his hand, and firmly, politely, looking her right in the eye, he said, “You don’t get a say in this. We’re going to do what the therapist is recommending, and we need you to do the same. It has to be consistent or it won’t help him.”

My heart stopped a little. We’d never told any of the grandparents how to do their job, how to love our kids. But now we were, for better or for worse. And while I was relieved that Wade had spoken up, I was terrified that this would be the beginning of a rift between us.

Instead, my mother-in-law nodded and said, “You’re right. Tell us what we can do to help.”

The most amazing part of that moment was not my mother-in-law’s willingness to do what we were asking, but the fact that my husband drew that line in the sand. He was right; the best way to help us — and to help Henry — is to stop offering suggestions. The most helpful thing everyone can do is work with us, not question what we’re doing. But it can be hard to say that, especially to the people who want to help the most.

It’s easy for me to tell a teacher that she’s asked Henry to do something unreasonable, because for the most part, those conversations are impersonal and are about the work, not the teacher. A couple of weeks ago, Henry’s literature teacher had the class read and interpret slave narratives. Because Henry has a pragmatic language disorder, he was completely unable to do what she was asking. “It’s a great assignment,” I told the teacher, “but he can’t do it.” She was happy to meet me in the middle because I wasn’t criticizing her teaching, just asking for a modification for my kid.

It’s harder to have that conversation with the grandparents. My in-laws recently got a new dog; she’s well trained and calm and delightful — and Henry is terrified of her. “Is there anything we can do to help him be less afraid?” my mother-in-law asked. No, I said, there isn’t. It’s been hard for them to accept that Henry will never make friends with the dog, but they’re trying; instead of insisting that Daisy won’t hurt him, they take her outside or into another room when he’s there. And we appreciate that.

Raising a special needs child can be exhausting, emotionally and physically. It’s important to have help. So telling someone to stop helping seems completely counterintuitive. But it has worked for our family.

Have you ever asked someone to stop offering advice? How did it go?

How My Aspie Kid Made Me an Introvert Fri, 21 Feb 2014 15:07:22 +0000 Susan Wagner

It’s Saturday afternoon; Charlie is at a friend’s house. He’s been there all day, playing football and basketball in the driveway with his friend and two other boys from their baseball team. But now it’s almost dinner time and we’re trying to sort out our plans for the evening. I text the friend’s mother and suggest that we come get Charlie. She texts back: Can he spend the night?

Sure! I say. We’ll bring him some clothes.

And then she says, We’re grilling steaks. Why don’t you all come eat with us?

Honestly, I would have loved nothing more. This family always makes everyone feel welcome and loved, and it’s always fun — for Charlie and for us — to hang out at their house.

But going to dinner there would have meant taking Henry to a house that was already full of kids, and it would have been overwhelming. For him and for us.

So we said thanks, but no thanks. We already have plans. Next time!

My husband and I used to be social people; in grad school, our weekends always included dinner with friends or a bike ride or an impromptu evening of drinking beer and watching basketball.

After Henry was born, we made friends with other couples with small children. On the weekends, we would grill while the kids played in the yard. During the week, while the dads were at work, the moms would organize play dates, which were less for the kids and more for us — it was a precious couple of hours of talking to someone who was potty trained and spoke in complete sentences. Those play dates got me through the toddler years, truly.

We don’t do anything like that any more. I keep up with the other parents at school via Facebook, but our facet-to-face socializing is pretty much limited to visiting with the parents at Charlie’s baseball and basketball games. And honestly, that’s the most I can commit to just now.

Because my Aspie kid — who struggles with social interaction — has turned me in to an introvert.

There are two reasons for this; one is the simple practical side. It’s difficult for Henry to be around other kids, particularly kids he doesn’t know well (and who aren’t already familiar and comfortable with his quirks). He isn’t sure how to act and he annoys everyone and eventually he will announce that he’s ready to go now and can we leave? Trying to socialize with his peers is exhausting and frustrating for him; trying to socialize with Charlie’s friends is even harder, because they’re all about sports and Henry has absolutely nothing in common with them.

As stressful as these social outings are for Henry, they are just as horrible for Wade and me. Henry’s awkward and sometimes inappropriate behavior is embarrassing, which is a terrible thing to say about your child, but there it is. He tends to talk too loudly and crash into things; he wants to climb on or jump off of everything. He will only play games with the other kids if he can be in charge of the rules. And when the other kids don’t do exactly what he tells them to do, he gets frustrated and yells.

We do our best to keep Henry out of situations where this is the end result; we are good at knowing what his triggers are and how much he can handle and what we just have to say no to. But this means we say no to almost every invitation because it’s just too much for him — and for us.

I had my first inkling of how much Henry’s disability would affect my social life not long after he was first diagnosed. I went to dinner with a very close friend, someone I saw two or three times a week and spoke to on the phone every single day. I was still new at telling people about Henry’s diagnosis, still inexperienced at explaining what all those labels meant, but I told my friend everything, including how sad I was about this new normal. And she said, “You know what, Susan? He’ll be fine. He’s going to outgrow it and be just fine.”

My friend was trying to be kind, but she didn’t understand. Other people, over the years, have been less kind, also because they didn’t understand. Either way, I feel like Henry and I are both being judged, and I just want to retreat into a safe place, away from the world.

Which is what Henry does, too, when he’s overwhelmed.

I spend a lot of time alone these days; I work from home and can go entire days without talking to anyone. It still surprises me how much I love that, and how much I need it. I have stopped pushing myself to be more social and just come to accept that this is the new normal. It’s a good normal, honestly, and it’s working well for Henry and for me.