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The Same But Different

with Susan Wagner

Susan Wagner is a freelance writer and editor, an avid runner and a mom of two boys. She's tentatively navigating the teen years with her oldest son, who has ADHD and an anxiety disorder (because puberty isn't hard enough already). [Insert blog name here] chronicles her efforts to balance science homework, basketball practice and panic attacks without completely losing her mind. Follow Susan on Twitter and Instagram (@workingcloset) and at her personal blog, The Working Closet

The Reading Hour: Why This Childhood Ritual Worked For My Kids

Categories: children, family, parenting, special needs kid

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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.

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The New Mom Motto: What’s the Worst That Can Happen?

Categories: children, parenting, special needs kid, stress

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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.

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Why “Fear” is My Co-parent

Categories: children, parenting

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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.

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3 Things Not To Say To The Parents of a Special Needs Kid

Categories: children, special needs kid, support system

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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.
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4 Bad Parenting Decisions That Have Been Good for My Family

Categories: children, parenting, special needs kid

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Henry is unpacking his homework at the kitchen table while I clean up after dinner. “Tell me again what all you have tonight,” I say. (I have already asked in the car on the way home from school, but that was hours ago.)

“Literature and social studies,” he answers, “and math, but only the odd problems, so that won’t take long. Can I download some songs?”

“Sure,” I tell him. ‘You can get two songs now, and two more when you’ve finished the lit and social studies assignments.”

“Great!” he says happily, and puts his ear buds in and starts searching for new music.

When Henry was four, the psychologist who did his very first evaluation told me two things that have been invaluable to me as a parent. The first was that Henry’s behavior — the inability to remember directions, the physical hyperactivity, the refusal to engage with things — was not something he did willfully. “He’s not trying to push your buttons,” the psychologist said. That was a huge relief to me, because I was sure, of course, that his propensity for jumping off things and running out into parking lots was my fault, somehow.

The second thing she told me was that Henry was a kid who would respond better to rewards than to punishments. I was baffled by this — how would that work? What was the alternative to putting him in time out when he misbehaved? How about rewarding him when he behaves, the doctor suggested — just with little things, like a word of praise or a high five, something to mark the fact that he was doing it right.

And that’s how I became the mom who buys her kid new music every time he finishes a math problem set.

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Best Books for Moms of Quirky Kids

Categories: children, special needs kid, therapy

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iStock_000011815793SmallOne night recently, Charlie started throwing up and couldn’t stop. I did all the mom things: made him a nest of towels in his bed, put the trash can within reach, left the bathroom light on — and then I crawled into the guest bed to be closer to his room. At 2:30 am, when he was still up and still sick, I Googled “appendicitis symptoms” because maybe I needed to take him to the emergency room or…something. (Fortunately, it was just your garden variety norovirus, although a really terrible one.)

This morning, thanks to an NPR story on changes to the way the DSMIV categorizes autism spectrum disorders, I spent an hour reading up on new labels and researching assessment tools. Before my second cup of coffee, I had rediagnosed Henry with Social Communication Disorder — which is essentially the same thing as Asperger Syndrome, and which precisely describes my kid’s behavior. I’m an information consumer, especially when it comes to my kids. I want to know why things are the way they are and what — if anything — I should be doing about it.

This is both a good thing and a bad thing; the Internet is there for me in the middle of the night when I just need information, but it’s also the fast track to imagining the worst case scenario. (When he was in second grade, Henry started telling us he was having trouble catching his breath. Google told me he might need a lung transplant. The pediatrician told me he was anxious.

Guess who was right? And guess who lost sleep for almost a week between the Google search and the doctor’s appointment???)

While I”m a big believer in the usefulness of a quick internet search, for everyday concerns — the kinds of issues that come up over and over (and over) again — I rely on books, the old fashioned kind, with paper and bindings and no plugs or lights. There are lots of great books about raising quirky kids, but I have three favorites that live permanently, dog eared and much worn, on my nightstand, within easy reach after a challenging day.
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Living in a Drug-Free Zone

Categories: children, parenting, special needs kid, stress

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Male doctor holding out medicationEvery morning, Henry takes a Claritin and a multivitamin. In the evening, he takes two Benadryl and two fish oil capsules. Occasionally, if he has a headache, he takes a couple of Tylenol.

Barring an illness, that’s the extent of his medication.

You’d think a kid like Henry would be a good candidate for medication, both for his ADHD and his anxiety. Unfortunately, he’s not; he falls into a very small percentage of kids, almost all with Aspergers, who don’t respond well to the available meds. We’ve tried virtually every ADHD med on the market, both stimulants and non-stimulants. Each time, the doctor lists the side effects and reassures us that odds were we won’t see any of them. Each time, often within days, we’re calling to ask if we can stop the meds because we’re seeing all the side effects.

The first medication Henry took was Adderall, and honestly, the change was amazing. My formerly disorganized, unfocused kid could suddenly stay on task and keep track of his things. This meant that he was less frustrated, which meant that he was happier and less stressed. It was remarkable.

Until we noticed the tic.

Henry has a couple of small tics — he scrunches his face in an odd way and makes little humming noises. The tics aren’t particularly bad or noticeable, but they’re worse when he’s tired or anxious. On the Adderall, the tics, particularly the scrunchy face, became pronounced. I called my pediatrician, hoping she would say it was nothing. Instead, she said, “You need to stop the medication right now.”

So we did.

Other medications had other side effects; the most common were an inability to sleep and a kind of generalized rage. Instead of helping my son to focus, the meds made him angry and wired.

So you might expect me to say that I am 100% opposed to ADHD medication, right? Because they’re bad! And dangerous!

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Guilt Trip

Categories: children, mom guilt, parenting

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Fall S CurveI’ve been trying to practice guilt-free parenting, but it’s hard; while I’m getting better at letting go of the little things, that still leaves a lot to feel bad about. Always.

A few weeks back, we had one of those nights where both kids had something big going on. Henry had a concert; Charlie had a baseball game. They were in two different places at the exact same time.

It was going to be tight. “If we take two cars,” I told Wade, “then I can take Henry home after the concert and come meet you at the game. And not miss anything!”

Of course, that’s not at all how it happened. After the concert, Henry was in one of those happy, communicative moods that are hard to come by in teens — and even more so in Aspie teens. He wanted to tell me all about the songs they sang (country music, loosely defined, including Johnny Cash’s “Ring of Fire” and Mumford and Sons “I Will Wait”) and about the crazy things that had happened in rehearsals that week and about everything that was going on at school. He rarely opens up like that, so of course it happened on a night when I had planned to be somewhere else.

I drove him home and fist bumped him and told him to text me when he was done with his homework, and left him happily eating cookies and doing his math, all alone at the kitchen table.

I stopped to put gas in my car on the way to the ball field, and that’s when I started to feel guilty. I go to a million baseball games, but I have so few really great moments with Henry, especially lately — what if I just skipped this one game?

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Dear Complaining Parents: You’re Ruining It For The Rest Of Us

Categories: children, parenting, school, special needs kid

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homework againLast year, my husband and I sat down with Henry’s teachers to talk about his diagnosis and about what kinds of things he could — and could not — be expected to do. We had always given his teachers a heads up about his issues, but as he moved into middle school, it was clear to us that we were finally at a point where he was going to need some extra help — and, occasionally, some significant accommodations — just to get through the day.

I am hesitant, always, to request special treatment for either of my sons; when I am compelled to ask for help, I am careful about what I say and how I say it. Wade and I both work hard to make it clear that we respect the job that the boys’ teachers and coaches are doing and that we are willing to meet them more than half way and do whatever they ask to help our son. We are also always clear that we expect our son — whichever son we happen to be talking about — to pull his own weight, to the best of his ability.

We went into our meeting with the middle school teachers prepared to argue for Henry, to explain — in detail, if necessary — what his issues were and what accommodations he might require and why we felt it was so important to do these things for him. We listed all the labels — ADHD, dysgraphia, generalized anxiety disorder, Aspergers syndrome — and shared what we knew about Henry: He is disorganized and doesn’t handle change well and has terrible handwriting and poor social skills.
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Winning Isn’t Bullying

Categories: bullying, children, parenting

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A crazy thing happened this week in Texas. Last Friday night, Aledo High School’s undefeated football team won their seventh game of the season, beating Western Hills 91-0.

Wait, that’s not the crazy part.

Aledo has won each of their games by an average of 77 points. No, still not to the crazy part.

On Saturday morning, Aledo’s coach was informed that a Western Hills parent had filed a bullying claim against his team — for winning Friday night’s game.

Now we’re to the crazy.

The parent who complained, according to CBS Local Dallas/Ft. Worth, felt that Aledo coach Tim Buchanan should have insisted that his players ease up on the Western Hills team. Buchanan disagrees: “I would never tell them, ‘Go out and let them score’. That’s not what you want to teach kids.”

So did Buchanan let his team run roughshod over the Western Hills players? No. “Buchanan said by halftime, when his team was up 56 points, he began actively trying to keep the score down,“ CBS Local Dallas/Ft. Worth reported, ”subbing in backup players, letting the clock run continuously, and instructing players to make fair catch calls.”

In other words, he coached a fair and sportsmanlike game.

But there must be more to this, right? Aledo’s players must have been trash talking the Western Hills team, acting ugly, getting up to something other than a damn good game of football on the field. Right?
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