Viewing category ‘special needs kid’

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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No Excuses: Explaining My Son’s Disability

Categories: family, special needs kid, support system

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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.

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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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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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How My Aspie Kid Made Me an Introvert

Categories: special needs kid, stress, therapy

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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.
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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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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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The Other Son

Categories: children, parenting, siblings, special needs kid

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photo(2)This is Charlie. He’s 11, and in the 5th grade. He plays basketball and baseball, and has recently gotten interested in college football. He loves Instagram (for the photos of NBA players and cute animals) and Sports Center (for NBA and MLB news). He spends hours in the driveway working on his layup and his free throws; every Sunday, he has a batting lesson with an Aussie coach who calls him “Chaalie.” He has very specific tastes in clothes; he gravitates toward long athletic shorts and quirky tees and bright colored high tops (with coordinating Nike Elite socks, of course). He will not wear Crocs or long sleeved polo shirts or the adorable plaid chino shorts I try to buy him every summer.

Charlie is easy going and kind, and he gets along with everyone. His teachers describe him as a leader; his coaches always comment on what a smart player he is. Everyone agrees that he is a good listener. When he talks to adults, he looks them right in the eye and answers thoughtfully and politely.

He is a hard worker and will keep at a task until he succeeds, whether it’s word problems or a left handed layup. He never complains about having to get up for 8 am basketball practice on a Saturday, or about sitting on the bench for a couple of innings during a tournament baseball game. He’s a team player, always.

Charlie is fun to be around. He will make up crazy songs, accompanied by outrageous dance moves, for no reason. He will eat anything — the more unusual, the better. He wants to go everywhere and see everything. He is already planning to go to college in Florida, because Florida has beaches and he loves the beach.
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