Tag Archives: Asperger’s Syndrome

September 5, 2011 · 9:09 am

Why We’re Home (with Asperger’s)

Exploring pi and the history of the number on the driveway.We didn’t start homeschooling for the benefit of Bryce, my son on the spectrum. Our road home started when he was three years old and enrolled not-so-happily in a public two-day-a-week preschool.  His older brother (who really needs a name here), had passed happily through a Montessori for ages 4 and 5, lost his love of learning at a different Montessori in first grade and entered our public academically talented program for second grade.   At seven, he’d seen what school after kindergarten was about and was stymied at what it had to do with him.  His father and I knew the public program was our last best option for reasons ranging from academic fit to logistics to cost.  So by December, when our older was slipping further away in misery in the classroom (too loud, too long, too unchallenging), we switched gears and became a homeschooling family the following January, nearly 7 years ago.

Bryce stayed in preschool. And when he turned four, he started the first of two years at the same Montessori where his brother had thrived.  Bryce thrived, too, although his social deficits were noticeable even in that welcoming, nurturing environment.  Come time for first grade, we gave Bryce the choice:  homeschool or go to school.  He chose home.  Each year, the choice is always presented:  home or school.  Each year, his answer comes with conviction and a hint of desperation: home!

So here we are.  Homeschooling with Asperger’s.  And with anxiety, ADHD, sensory issues, and a bunch of other little stuff that sometimes isn’t that little.

Most days, I’m glad we’re here.  I’m always grateful that I’ve had the option, even post-divorce, to educate my kids in a way that works best for them.  That’s what brought my older son home some seven years ago, and that desire keeps us here, even on the days when I’m ready to pack one or more of them in the car, immunization cards and proof of residency in hand, and drop them off at the buildings they’d call school if we’d made a different choice.  Homeschooling is a privilege paired with responsibility for all of us, and I don’t hesitate to sing that refrain when needed around here.  It’s not exactly a morale booster, but it is effective.

The decision hardly goes unchallenged by friends, family, and strangers, the latter who don’t know about Bryce’s ASD diagnosis and either think homeschooling is great or hold that their children would never listen to them and they wouldn’t have the patience anyway.  Gentle challenging comes from those closer in and know how difficult some of our days are, knowing how much I struggle to find a way through Bryce’s defenses and worries on a day-to-day basis.  Perhaps he should try school, they say.  Perhaps he’d learn from the other kids how to manage social situations.  He’d be on top of the class academically, and he’s enjoy that, they say.  He’d do just fine.

Perhaps.   Although I don’t think so. The thought of navigating the school system (again) with a twice-exceptional kid (gifted with learning challenges) still gives me chills, even seven years after leaving school with my older, also twice-exceptional although not on the spectrum.  And while I could buck up and do it if we absolutely had to, I don’t absolutely have to.

As for Bryce?  He hates the idea of school and completely has it nailed why he should never go:  too many people, too much noise, not enough hard academic work.  It’s hard to argue with that list.  A room full of 30 other kids his own age means far more than 30 relationships to navigate.  All the relationships between the other kids play into the dynamics of the room.  Bryce’s social skills are coming along, but he still prefers humans in small doses (me, too).  Homeschooling allows us to choose our socialization opportunities more closely and make academic time largely about academics, not about navigating relationships. His online classes allow some of the classroom experiences, like raising a hand and waiting to be called upon, without the noise and bluster of a physical classroom.  Religious education class and karate give him some “live” class experience without the all-day of school.

The noise.  I’m with him there.  All three of us, for as much as we talk, don’t do so well in a loud environment.  We’re introverts and prefer intense quiet when working.  Come college, quiet places for study abound, and classrooms (labs aside) are generally quiet and orderly.  I doubt Bryce would place himself in a noisy, crowded environment for word when the time comes, so this learning preference now should be adequate for his future needs.

His academic concerns are likely spot on as well.  He’s a serious history buff and has been since age 5.  Discussion about the nuances between earlier and later ancient Roman weaponry or comparison and contrasts between the falls of ancient civilizations and the current peril of modern ones is hardly elementary school classroom material, nor is Lord of the Rings standard fare in the 4th grade reading class.  I’ve neither the will nor desire to tug both ends of the accommodation string, and without stimulating content in history, science, literature, and math, he’s likely to lack incentive to bother with the classroom.

“Besides,” he’ll whisper, “I’d get teased.”

He would.  Teased and, likely, bullied.  It’s happened in the warmth of our small, accepting UU church.  It’s happened at day camps.  He swallows it, unsure of how to respond, then explodes hours or days later, either at his brother or I, before finally bursting out, “How can I be nice to you when I was teased earlier!”

Why is he teased?  For the usual reasons, plus some. He chews his shirts, doesn’t care about popular culture or style, struggles with athletics, and moves in the slightly unique way many on the spectrum move, especially when running.  Did I mention his tics?  The two psychologists who have cared for him blanch when I mention even considering returning him to school, urging me to continue educating him at home. But we don’t stay home because of their urging.  We stay home because it’s the best option for now.

So we homeschool, and while we didn’t come home because of his Asperger’s, his Asperger’s is a mighty good reason to stay home for as long as he wants and I can continue to do it.  Homeschooling isn’t for every family, and I’d never encourage one to jump in the homeschooling pool without a long look at the lifestyle (love it) and demands (high).  As I always say to those who ask when we’ll stop and “let” the boys go to school, “It’s working now, and as long as it works for all of us, we’ll keep doing it.”

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August 28, 2011 · 11:43 am

Homeschooling on the Spectrum

I’ve recently realized that while I’ve written quite a bit about my experiences parenting a child on the spectrum, but I’ve yet to discuss homeschooling that same child.  His Asperger’s informs and influences our homeschooling plans and the execution of those plans, and, as our school year is starting the day after labor day, I’ll write more about that.  For now, here’s our plans for fall.  We’re unlikely to follow them to the letter, and they are likely to change at any time.  They take into account a child who is highly/profoundly gifted, somewhat writing reluctant, and history obsessed.  With those caveats out there, here are our plans for 2011/12.  Where applicable, I’ve linked to my reviews on some of the materials.

Math:  Last year, more independent mathematical work was one of my goals.  My younger still has a fair amount of panic about getting problems wrong, so generally he checks in with me after each problem.  This drives me nuts, honestly, and while he’s sometimes willing to forgo that pattern when he’s feeling super-confident, he has a long way to go.  We slowed math down last year when his panic at the word “math” began to mount.  He’s highly mathematically talented and minimally mathematically interested, and I really struggle with his aversion to something he does so well.  We added some of Theoni Pappas‘ work for fun, and Penrose the Cat is a hit.  Anything with a cat is a hit, but I have yet to find the all-cat math curriculum. We’ll continue with Pappas and similar material as we finish up Singapore 6B and Singapore Challenging Word Problems 6, a project that shouldn’t take long.  Upon his request, we’ll work through Pre-Algebra I and II from Life of Fred. (He saw a friend’s copy and thought it looked okay.)I didn’t bother with pre-algebra with my older son, heading straight to Jacob’s Algebra after Singapore 6, but this child needs confidence despite his obvious talent, and I hope time and some diversions into other aspects of math provides that.

Science:  We’re all on to Earth Science this year, using CPO Middle School Earth Science for my younger.  It’s an inquiry-based curriculum, which means that questioning comes before vocabulary and scientific thinking trumps rote comprehension questions.  I’m a fan of the inquiry method and excited to try this well-reviewed curriculum.  It’s not designed for homeschoolers, and I’ll try to keep track of changes we make and materials we need so others might benefit later.  We have a bit of Middle School Chemistry to finish still, but we’re reaching to finish line on that.

History:  After a highly successful semester with Online G3‘s History of US 2B (1899 to the present), my younger’s eager to take the rest of her offerings.  First semester, he’ll take the corresponding 1A course, covering the first three books of the History of US series by Joy Hakim.  He’s likely to pick up another in the series come spring.  I imagine he’ll want to take on another of her American History series the following semester as well. Formal history is in Headmistress’ Guinevere’s hands. Whew.

Language Arts:  My younger devoured two levels of Michael Clay Thompson’s Grammar and Vocabulary books, so this year he hits the big leagues with Word Within the Word I and Magic Lens I.  As did his brother, he’ll do these with Online G3, but while I left his brother does his own devices and kept my nose (mostly) out of the class, I’ll keep tighter reign on my younger son.  We’ll read the books together, and I plan on more outside work on the vocabulary for him.  I probably should have done the latter with his older brother last year, but it just didn’t happen.  We’re only half-way through Paragraph Town’s 20 lessons, meaning the book has been read but that other activities are left to be done.  At the end of last school year, typing skills sharp from Online G3 classes, he started a blog (Bertram’s Blog).  He’s abandoned it so far this summer, but it’s built his confidence as a writer.  Hopefully, we’ll move into Essay Voyage as the year progresses.  For the fall, he’ll takeLightening Literature 7, again with Online G3.  Can you tell we adore Headmistress Guinevere and her classes?

The Rest:  As a family, we’re trying Rosetta Stone Spanish I in hopes of providing all of us with some exposure to the language before someone takes Spanish in a classroom (likely my older son, who needs two years of it before college).  Karate continues to be our main source of PE, and we may be up for our black belts in March (not sure at all Bryce will be ready for this).  Piano study for my younger also continues.  Spelling with Steck-Vaughn materials was a wild success.  Who knew we just needed a traditional old workbook approach for that subject?  He’ll move onto the 5th level this year, and he’s delighted.  Handwriting issues have hit and hit hard. A year and a half of cursive via Handwriting Without Tears has produced many tears and no usable cursive.  His older brother fared no better, so, like his older brother did, we’ll move him back to print and finish out Handwriting Without Tears Can-Do Print.  His printing is far better than his older brother’s who has some serious dysgraphia issues, but it is still a work in progress.  Thankfully, both boys type quite well.

And the Asperger’s part: After discussion with his therapist, we’re leaving the social skills group he’s attended the past three months.  He’s not challenged enough there, and we need to put our resources (time, money, and energy) into interventions that really help.  A return to physical therapy is on the table, with core strength a focus, although theoretically, karate and swimming should be helping this.  I’m investigating speech therapy options with a focus on vocal qualities (he is SO loud and tends to sound angry).  At home, we’ll return to Asperger’s:  What Does it Mean to Me?, a workbook for parent and child about many of the defining characteristics of HFA and AS, focusing on self-knowledge.  He’s loved learning idioms, so we’ll work on more of those as well.

My fingers and toes are crossed as I finish up at least our first few weeks of scheduling (and I’ll post soon about how we manage scheduling and planning with an anxious Aspie kid.  The short answer?  Not well enough yet.)

If you’re homeschooling a child on the spectrum, what are you doing this year?  If your child is in school, what is happening there? 

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August 25, 2011 · 6:48 pm

Cliff Hanging

I have a strong affinity for Cliff Hanger from the PBS cartoon, Between the Lions. He's resourceful, but he's always left on the edge of that cliff.

I’m tired.  Specifically, I’m tired of Asperger’s.

I don’t hate it or my son who has it.  I’m not angry at the brain he has, that brilliant brain that thinks in completely different ways than my neurotypical brain.  I’m not out to “fix” him or “cure” him.  He’s not broken or sick.  His Asperger’s is part of who he is as much as his grey/green/blue eyes and his love of all things cat-related.

But I am exceptionally tired.  Tired of the explosions rocking our world.  Tired of walking on eggshells, wondering if this time he’ll accept my “no” with a head tilt and relaxed, “Okay,” or whether he’ll erupt into a tantrum of Vesuvius proportions.  Tired of guessing how he’s understanding what he’s hearing and seeing, knowing it isn’t how I see or understand and and that he often forgets just how differently he perceives the world, at least differently than his brother and I do.  Tired of hearing myself yell when I can’t take it anymore.  Tired of crying when I hate that I yelled at my kid, my kid with Asperger’s.

He’s tired, too.  He’s tired of traveling and returning home and all the routine-breaking that goes with that.  He likes the places we’ve gone, the family we’ve seen.  He liked Stunt Camp, even though he was teased by one of the other kids.  He really liked SUUSI, the Southeastern Unitarian Universalist Summer Institute (read:  giant UU church camp) we attended in July, a place he marveled at, summing it up in one tear-jerking statement, “I like it here.  No one teases me here.”

Like these trips and visits or not, the transitions torture him.  And when he’s tortured, so am I.  Yeah, I’m the mom.  I should be able to weather his storms time and again, always staying calm (since that works better with almost every person when they’re upset) and sane (as that works better for dealing with life in general).  I should not yell, not scream, not threaten with school, not slam my door and cry in frustration over the moment, in fear of his future, in sorrow for mistakes of the past, in anxiety about keeping the three of us in one piece emotionally while he pounds on my door again, yelling to be heard again.  Yelling, pounding, crying in frustration, crying in fear, sorrow, and anxiety.

It’s messy that way, at least for me, parenting a child with Asperger’s with a large dose of anxiety and a dash of ADHD on the side.

There’s plenty of frustration, fear, sorrow, and anxiety all around.  There’s also anger, anger that’s usually anxiety turned sideways, fear turned upside down, and sorrow turned inside out.  Anger is his default emotion, since the others are often just not accessable or expressable or something.  The others just seem lost in translation, with only anger surfacing.  The anger wears me out.  His and mine.

I’m desperate for another emotion from him.  Occasionally, he’ll talk about being afraid: afraid of his room, the backyard, the front yard, some math problems, new piano pieces, and countless other places and conditions that he hasn’t yet expressed or can’t name.  He just assumes I know what he fears, how he feels, what he knows.

But of course I don’t know.  While it may not be true of all on the spectrum, a lack of Theory of Mind is part of Bryce’s Aspergers. He has a terrible time seeing from another’s point of view, at least in real life. He’ll admit it freely and has even volunteered is challenge when flustered.  Sure, offer him a hypothetical Theory of Mind test, and he’ll give the right answer.  He has enough logic skills to do that.  In real time, with emotions running high, it’s a different story.

Worse yet, he struggles to interpret his own internal milieu.  Thanks to lots of conversation between the two of us and some time with a fine therapist, he’s more often able to label at least his anxiety and sometimes communicate it.  He still generally screams it in anger, but screaming,”I’m really anxious about this math problem,” mid-meltdown at least gives me a bit more information than his usual rants.  And, if I’m not too far over the edge (lately, I tend to be hanging by a fingernail), that bit of information gets through and allows me to reframe the situation and change my (highly ineffective) all too-frequent response of yelling back.

So I’m tired.  Perhaps not so much of his Asperger’s itself, but of hanging onto this cliff during this siege of meltdowns.  Emotional regulation required emotion recognition, and that’s still in early stages for him.  Somehow or other, we’ll find a way up, and I’ll come off the cliff and stand on solid ground again.  Somehow.

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July 31, 2011 · 12:43 pm

Reentry Blues

Abundant joy filled us at SUUSI. Bringing it home was challenging.

Our vacation to SUUSI (Southeast Unitarian Universalist Summer Institute in Radford, VA) was amazing. We all thrived in the presence of over 1100 incredibly accepting people, plenty of live folk music, and vast amounts of good food that I didn’t have to cook (mom bonus). I’d anticipated meltdowns from Bryce, either due to heat, too many people, or just anxiety. While he had a few brief snits about scheduling, he had one of the more easy-going, social weeks of his entire life. Really.

Then we came home.

We should have stayed in Virginia. Bryce started going hinky by the time we hit West Virginia. Each rest stop, brief as they were, seemed to stir him up. While he held it together for most of the driving, by the time we reached Columbus to spend the night, he was clearly losing his SUUSI cool. He was anxious, oppositional, louder, and just plain out of sorts. Nothing we haven’t survived before many times, but watching him come undone after so much joy, peace, and happiness saddened me as much as it unnerved me.

Turns out our very quiet stop for the night was be just the start of reentry pains for him. We were all missing SUUSI, and I was bummed about returning to kitchen duty three times a day, but Bryce was suffering the most. And when Bryce suffers, we all suffer.

As soon as we left SUUSI, his appetite plummeted. After a week of three meals a day instead of his usual grazing, I hoped his system would be more in sync with mine. This was not to be. Food at usual hours went (and still goes) largely uneaten. Perfectly able to wait to eat (tons) when on the Radford University cafeteria schedule, once home, his eating was in fits and spurts, as it had been before we left. Perhaps his system thrives on pancakes, tater tots, cheeseburgers, and at least one vegetable a day that mom made him eat. Perhaps all the whole grain, fruits, veggies, rice, and beans he eats at home are really toxic compared to the white-bread and fat fest he had on vacation. Makes a generally sane woman wonder.

His appetite wasn’t the only victim of reentry syndrome. He’d amassed a bit of sleep debt on vacation, but once home, he couldn’t fall asleep. A week later, he’s still struggling to fall asleep in his own bed (no success yet) and falling asleep in mine without me by his side. He’s not my favorite sleeping companion, given his predilection for sleeping parallel with the pillows. I’m short, but I don’t fit on a queen-sized bed in that direction.

The sleeping and eating difficulties would be tolerable if he just weren’t so overall miserable. He won’t (or, more likely, can’t) tell me why he’s so angry and frustrated, and multiple attempts to help him dissect out his angst were met with anger. He was delightful when left to his own devices. Kinda. It didn’t take more than a Magic the Gathering card to be misplaced to throw him into a tizzy. On the long car ride, he’d rebonded with his Nintendo DS. Toward the end of the ride, he began wondering about the whereabouts of a particular DS game, one of the Pokemon series. Have you seen a DS game? It’s about the size of a Wheat Thin but costs good deal more. And he was sure it was somewhere in the house. That would be fine if it meant an organized search with perhaps even a bit of sorting. But no. For four days, he’d have bursts of searching for this tiny item, no matter what else was going. Time for dinner? Time to go to a piano lesson? Want to play with a friend? No to all of those if he was mid-search. Demands that his brother and I search, too, tipped me over the edge. After looking in the places where the game belonged, I bailed. We’re talking a Wheat Thin,here.

I’ll spare you the explosions about computer time, errands to run, thank-you notes to write, and chores to complete. If it wasn’t his idea, it wasn’t happening. He even took the grief to his father’s, which hasn’t happened in quite a while. He’s honest about saving his vitriol and angst for me, and to have it spill over their meant his distress was far greater than his usual transition struggles. I’d like to say that news put it into perspective, that I summoned the patience and peace to parent him through the time with love and compassion. Nope. I did feel a (highly inappropriate) bit of glee that he’d vented on his father, too, but that was soon dampened by his mood at home.

Somehow, we made it through the week. By Friday, while his sleep and appetite were still off, his mood had improved. He’d returned to his normal. And I was relieved. The mystery of it all is what flummoxed me. I know transitions challenge him, but somehow the transition there was so smooth. Admittedly, the schedule was regular, and I was very accommodating. Since my older could experience SUUSI without me if he wanted, the trip allowed us a vacation where following Bryce’s needs didn’t impact my older son’s vacation. That’s part of why I decided to try it. And, in that way and many others, it was successful. But home, demands are more variable, and we have places to go that aren’t his first choice. That’s as much as I can figure out, not being in his brain and he not being able/willing to share what’s there.  That’s what challenges me the most as a neurotypical mom raising an Aspie kid.  We have very different operating systems.  I tell him tons about how neurotypical minds tend to work and look forward to the day when he can tell me more about how his mind operates.  That will bring joy to both of us.

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July 21, 2011 · 7:50 pm

Step In My Shoes

My sons shoes are not my shoes. He has Asperger’s. I don’t. I know this. I know his brain processes differently than mine, and yet I often find myself holding him to standards that his amazing brain cannot hope to meet, at least not yet.

During breakfast yesterday morning, on our third full day at SUUSI (Southeastern Unitarian Universalist Summer Institute — think family church camp), I tried to verbally coax my son back to the dorm to get ready for our morning schedule. He had a class; I had a worship service. Agenda in mind, I was watching the clock. He was thinking of waffles. Not the quick kind either. The Belgian kind so many cafeterias had, where you pour the pre made batter onto the griddle, close the lid, and gently rotate the pan. Two and a half minutes later, a waffle is born.

We didn’t have time for a waffle. Not just the 2.5 minutes it would take to cook, but for the walk to the waffle area, the line for the device, the application of syrup, and the slow savoring of every bite. My mind was on the time, and my son’s was on the waffle.

So we did what we do when we’re at odds — repeated our respective stances in gradually more aggrieved tones (but now in the presence of dozens of unwilling audience members) until finally, he grabbed a biscuit at we made our way out of the dining hall. Whew. We’ll make it to class and all on time.

It was not to be.

Bryce trailed slowly behind me, walking at my pace but many steps back. By the time we reached the door of our dorm, he was whining loudly while I walked progressively faster. Before we reached our room, we were both seething. My eyes on the time, I laid out the list of tasks before we had to leave for his class and my service. He commenced meltdown sequence, shrieking his resistance for the whole floor to hear. We were clearly in danger of a full-scale tantrum.

Step in his shoes. I needed to step in his shoes. I didn’t want to. I wanted to ship him off to his morning session and make it to the morning talk at service. Time was slipping away, and I just wanted him to cooperate and get out the door with me. Couldn’t he see that?

Nope. He just saw too many transitions. He wanted to make it to that class. While he’s not exactly finding best friends, he’s thoroughly enjoying the programs designed for the kids. It’s just the transitions from the quiet room to the bustling dining hall back to the quiet room and then off to the noisy children’s programing building is a bit much for him. In my mind, it all seemed logical and easy. Rise, go to eat, return and wash up, get on with the day. Simple.

Stepping in his shoes, I saw the problems. Two quarter mile walks plus several flights of stairs. A cafeteria full of people to be negotiated and food to be chosen. Toothbrushing to do (not a comfortable task for him) and sunscreen to apply (a very distressing sensation for him). Another walk, more steps, more people. It’s a lot to take.

Somehow I managed to breathe and slow down. Somehow, we made it out the door, sunscreen on, teeth brushed, shoes on. Somehow, we made it to his class with a few minutes to spare. I signed him in while he sat in protest outside his class, still rancorous at the morning’s pace, which seemed relentless to him. I left him there, still complaining, and told him I hoped that by lunch, he’d be in a better mood.

And he was. When we found each other in the cafeteria at noon, my exuberant boy was back. And yes, I made it the morning service, arriving only a few minutes late.

And we managed all that because I stepped into his shoes, and felt the pinch that he feels when rushed and faced with uncomfortable sensations. I allowed myself to look at the morning through his eyes, at least the best I can, and feel the pace as he must feel it. I didn’t do it perfectly. I didn’t do it with grace. But I did it. I can do it, and he simply can’t. He can’t (yet) look at the world through the eyes of another or step in another’s shoes. So for now, it’s up to me to step into his, walk a bit, and find where he might be.

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July 7, 2011 · 9:25 pm

Sweet and Sour: A New Special Interest

Thank goodness he doesn't have this many yet.

Bryce turned 10 today.  Maternal reminiscing and wistfulness we’re on the schedule for me.  Pancakes, two sausage links, and blueberries followed by present-opening were first on his agenda.  But the best part, at least for Bryce, came later.

Thanks to some good friends, Bryce has a new special interest.  Minecraft hasn’t lost ground, unfortunately, but Magic the Gathering is right up there now.  For those of you not in the know (and, boy, do I sometimes wish I was with you), Magic the Gathering is a decade – plus old game involving trading cards and a myriad of changing rules.  Stuff to collect, tags to research, and tons of rules — sounds like an obsession in the making.

Four weeks ago, he played his first game with one of his best friends.  Knowing my younger son’s tendency to latch onto trading card games like pine cone sap on new leather gardening gloves, she asked my permission before asking her son to teach my boys the game.  Before heading over, he read the rules online, watching as many of the tutorials as time permitted.  By the time they finished their first few games, he was sold.

It’s a sweet and sour feeling these sudden attractions bring on: sweetness at his enthusiasm about something new; sourness wondering how much of our lives will be consumed by the new preoccupation.  It’s a kick to watch him excited as he gathers data and cards, memorizing every factoid as he goes.  Admittedly, it’s a bit of a bigger kick when it’s about something rooted in reality, like during one of his many historical period flings.  But even with fictional information, he can make connections, categorize information, and imagine endlessly.  He does more than read and play the game — the cards are all characters and quickly become part of his very rich pretend world.  This same pretend world was a sticking point for his diagnosis of Asperger’s some years back.  Just goes to show that every kid on the spectrum is different.  Bryce pretends.  He spends hours reenacting, too, but he definitely pretends.

Sure, I love that he’s occupied.  And I love that this obsession is social.  It was great social currency at Stunt Camp, where the first detail he shared about camp was that kids played Magic cards during the lunch break.  His cards were in his pocket the next day, and he played several rounds, even learning the name of one of the kids in his group.  This doesn’t happen in our house.  None of us are great with names, but while I generally ask and forget, my kids don’t think to ask.  Maybe it’s a boy thing, maybe it’s just them, but they rarely know the names of kids they’ve met.  So if I hear a name, I know it’s important, either in a good or bad way.  This child, J., was definitely in Bryce’s radar, which is a task I can’t always accomplish.  Holding my breath, I asked if he’d made a friend.

Bryce paused before answering, “Well, we’re sword fighting partners, and we both like Magic The Gathering, so I guess we are.”   Proximity is a fairly immature friendship definition (characteristic of ages 3 -6 ), while shared interest is a step up on the friendship levels (ages 6 -9).  It’s often stated that kids with Asperger’s are generally socially two-thirds of their chronological age, and for quite some time, I’ve thought that fit Bryce.  It’s nice to know he’s growing socially.  If Magic cards help him make those connections as he passes into double digits, great.  (See Tony Attwood’s book, The Complete Guide to Asperger’s Syndrome on more of the stages of friendship)

Then there’s the sour.  Endless countdowns until his next allowance (small and parsed out monthly by mutual agreement) and begging for extra jobs to earn more money on the interest of the season drive me mad.  How many times can I say, “No, you have to wait until the first of the month, and, no, I have no money-earning jobs for you, ” before I lose it?  Sometimes, not many.  Then there’s the time:  time to look at cards, look for information online, talk about cards, and play the game with his brother (who doesn’t have as high an interest but is generally willing) or a friend, 20 minutes away. Finally, there’s the endless monologue about the interest.  I was practically a Pokemon expert a few years back, thanks to second-hand Pokemon exposure.  There’s no way I’ll pick up all the Magic lingo, at least not willingly.  My brain is full, and, frankly, I’m not interested.

Sour is also the stuff that accumulated on couches, floors, tables, and in the car.  Cards, this time, that can (and will) get lost or taken by a cat.  Thousands of cards (and he’s over 1300 at this point), and he’ll know if one is missing.  The APB goes out, and my stomach drops.  As he gets older, sometimes he’s able to accept that the card will, eventually, turn up (and hopefully not in the litter box), but not always.  Loss is a serious risk.

But today, the sweet far outweighs the sour.  Watching Bryce ask for cards at the card stores, sounding like an expert to my novice ears and to the other lone woman in the card store (Men and boys predominate in these places).  As she noted how smart he sounded and marveled at his knowledge, I glowed a bit, that kind of pride a mom can’t help but get when her child shines.  Better still is sensing his deep satisfaction in the trips for cards, satisfaction he doesn’t verbalize but leaks out of him in his posture and visage.  He’s in his element, master of his realm, and it’s pleasant to watch.

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July 4, 2011 · 4:26 pm

Orange Sky at Night

A few nights ago,  the sky in some of the MetroDetroit area turned a vibrant yet eerie orange.  Trained by my older son to check NOAA whenever the weather possibly  might change, I kept looking away from my Netflix selection toward my iPad to check for tornado warnings and watches.  None came.   And the sky remained orange.

Orange is NOT the expected color for the sky, sunrises and sunsets excluded.  Blue, grey, deep violet as night approaches.  All those are expected.  But not orange.

I’ve been using that kind of language with Bryce for the last few months:  this is expected, that is not.  It’s expected that one apologizes when bumping into another.  It’s unexpected when one ignores a greeting.  Using a fork or spoon to eat rice (at least in this country) — expected.  Using your fingers for rice and eating it grain by grain –unexpected.  Expectations are culturally biased, of course, but we’re struggling enough with what is expected in our little corner of the world, thank you very much.  Just a greeting is a minefield.  Do you ask how the other person is?  When do you shake hands?  For how long?  How firmly?  Do I have to hug grandma and grandpa?

Bryce isn’t yet asking these questions, but I’m providing some fairly all-purpose answers anyway.  Before we visit anyone, I review the rules of engagement.  Say hello or hi.  Try to make at least brief eye contact (it’s expected and makes the other person feel connected).  When we go, say goodbye and thank the host for having us.  That’s about as far as he’s gotten, and the process generally requires prompting.  I’m fairly certain he doesn’t see the point, but I just keep reminding, calmly reminding him that, “It’s expected.”

Why does it matter to do what’s expected?  I’ve tried to teach my kids to think for themselves, and obviously my younger has absolutely no problem with that.  Oblivious to what are the expected social norms, he’s the ultimate individualist.  I can’t blame him.  Many of the social niceties and rituals don’t make much sense.  I explain them as “social glue”, which seems to have some traction with him.  But he understands better when I remind him that when you do something unexpected, the other person may feel uncomfortable.

Ahh.  That he gets.  He’s been uncomfortable plenty of times. Unexpected he doesn’t care about.  So much is unexpected to him.  His asperger’s operating system doesn’t make mid-flight adjustments well, and sometimes things I see as small unexpected obstacles to the day are mountains to him.  While I think he generally feels uncomfortable at these times, he generally expressed his discomfort and anxiety via anger.   That makes me uncomfortable.  (Although you’d think ten years into parenting him I’d expect that response.)

I’ll admit to some resistance on Bryce’s end to the “expected” and “unexpected” language.  After an expected/unexpected example from mom, he’ll sometimes announce that he really doesn’t care what other people think.  I counter in my head that he does care, he just doesn’t care for being wrong.  Since he’s slowly assimilating some of the “expected” skills we’re working on, I’m guessing I’m reading that one correctly.

Some days, the line does more than fall flat: it explodes.  ”Why do I have to be the one to change?” he’ll rant.  ”Why can’t everyone just understand my way of doing things?”

Here, I rely on math.  ”If one person in 100 has an autism processing system, is it realistic to think the other 99 are going to manage to “get” the one with autism?” I’ve often countered.  Sometimes he blunders forward, insisting all of us should change, sometimes he just stops ranting.  I’d love the whole world to “get” my very direct and sometimes abrasive child, excusing him for his brusque demeanor and spotty manners.  It would save both of us a ton of effort, but it’s unlikely that the world will become that accommodating.  We all need to move towards the norms at times, like it or not.  It’s what’s expected.

A few nights back, I looked at the sky and saw the unexpected.  Green sky turning orange.  Orange remaining for over thirty minutes in an otherwise peaceful sky.  Once several weather checks reassured me that a tornado wasn’t on the way, I accepted that less than one in a hundred sky, uncomfortable as it initially made me.  I marveled at its beauty and uniqueness.  I’ve marveled at my son the same way.  While he’s sometimes a bit scary to parent, he’s gloriously unique.  As much as I appreciate that, however, I’ll continue to spout expected/unexpected information his way, because I want him to be appreciated by that other 99 percent for the remarkable human he is.

Thanks to Michelle Garcia Winner and Pamela Crooke’s book, You Are A Social Detective!, who introduced us to the expected/unexpected language.  It was not a favorite of his, but he endured my read-aloud of it and continues to generally tolerate my reliance on the language they introduced. 

Thanks to Jeannie Bay for these shots of the July 2nd sky.

 

 

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June 24, 2011 · 10:17 pm

Two Steps Back

Progress with any developmental disorder is rarely strictly linear.  Sometimes it seems to be one step forward, one step back, with little forward gain but also no net loss.  Other times, it seems a slow two steps forward, one step back affair, the often slow but detectable gain of skills outweighing the occasional backward step.  But some days, it seems all backward.

Today was a backward day.  In fact, I can’t recall a day in many months that ‘d label as bad from start of finish.  Generally, I avoid trashing a whole day, preferring to see the low spots as just that, spots, amidst an at least otherwise neutral background.

Today I’d be pressed to do that.  I practically giggled with glee when his father came to take him for the night.  (One of the few benefits of divorce is time in my own home without my kids.  Shh.  Don’t tell or everyone will be doing it.)  From breakfast onward he was oppositional and anxious, and I don’t really know why.  It started with a general refusal of breakfast beyond a few meager bites. Note:  He’s a really skinny kid.  Both my kids are, and I’ve longed to tattoo their foreheads with the words, “Yes, my mother feeds me.”   Today, he was joining me on his scooter while I went for a run.  Eating something beforehand seemed a good idea to me, but he was stubbornly against it. But despite the poor nutritional start, our fitness outing went well.  That was the last thing that went well today.

With a friend expected in the afternoon, I coaxed Bryce through some math problems (see this post on Quarks and Quirks, my general homeschooling blog for our summer schooling plans) and a page of handwriting.  It was miserable.  His anxiety was set on high for each task.  When Bryce is anxious, he’s louder than usual.  His tone becomes angry (although he can’t hear it himself), and he’s oppositional as can be.  I have a bad habit of catching his anxiety and anger and responding with a similar tone.  It’s been six months since he’s had the loud and long tantrums he had in years past, but when he ramps up, I still tighten, preparing for an hour or two of deafening argument and opposition, possibly punctuated with door banging and other delights.

I tensed quickly today.  That didn’t help.  He’s good at math, but he kinda freaks if he thinks he made a mistake.  Since he worries about the mistakes, he likes me to check every problem as he goes (a practice I discourage because it drives me nuts and increases his anxiety).  But when I hear, “Mom, is this right?” I often automatically look and start checking.  This morning, I’d just started looking over the problem when he screeched that he’s gotten it wrong.  Now, I’m pretty mathy, but it does take me a bit to work through the problem (no answer guide, darn it), and getting interrupted by a shriek in the middle figuring the perimeter of this object pushed my buttons.  Which pushed his buttons.  You get the picture.

Twenty minutes later, he’s finished the problems, smiling at how easy they were.  I eye him warily as I check the last 10, praying they’re all right so we don’t have a repeat meltdown.  They’re fine. Perhaps we’re fine today.  On to handwriting.

For my guys, Cursive Success meant plenty of tears and no success with cursive. <sigh>

Handwriting Without Tears is a sound curriculum used by homeschooling families, schools, and occupational therapists.  But it’s a lie.  My kids have cried plenty while doing those pages, although that has far more to do with their temperaments and disabilities than the materials.  My boys print only.  Both completed two years of cursive with HWT materials.  Both wanted to learn cursive.  Neither could incorporate those wiggly, connected letters as a useful  handwriting tool.  My younger was rescued from the attempt a bit earlier, when he renounced cursive halfway through the second book.  Since then, we’ve used the book as printing practice.  He reads the cursive and translates it into print, thus reinforcing his ability to read cursive while pounding the formation of the print alphabet into his brain yet again.

While handwriting is hardly a favorite around here, Bryce generally doesn’t balk.  Today is different.  Somehow, today everything is impossible.  He manages three sentences, and his handwriting was awful.  Not that I told him that.  I was still shaken from math and saw no gain pointing out the poorly formed letters and awkwardly spaced words to my already tearful kid.  Handwriting Without Tears, my foot.

I’d withstood with morning by holding on to our afternoon plans.  Folks were coming over, a buddy who is more cousin than friend and whose mom is more sister than friend to me.  The three boys had been doing well lately, enjoying a bit of Minecraft balanced with the trading card game, Magic the Gathering, and plenty of running around.  I’d pegged some of his anxiety to the anticipation of having his buddy around and a bit of access to his favorite computer game (the three play together on two computers).  But things continued to slide downhill all afternoon.  He complained loudly during the card games, accusing others of unfair playing and an assortment of rule infractions.  Even his time at the computer was marred by a stink about how long he could play.  I could relate the whole meltdown, but then you’d want to hide in your bathroom with the fan on and the water running and that’s my spot to go when I’m going to lose it, so I’ll allow you to use your imagination.  Suffice it to say, the afternoon was long and painful.

But why such a rough day?  I asked him about it.  Part of the challenge of Asperger’s is identifying feelings.  Often when he has a bad day, he’s getting sick.  His brother has had a cold, so I questioned him about symptoms and got nowhere.  He’s also experiencing another round of a recurring rash which he says isn’t itchy but seems to be accompanied by not-s0-delightful behavior.  Since kids on the autistic spectrum don’t often sense or express pain the same way as neurotypicals, I tend to ask a lot of questions about physical sensations when he’s out of sorts.  No information came forth, although as I continued to question him he blamed his mood on my insistence that he eat something that morning.  I was not convinced, but I did manage to leave that answer alone.

So here I am, many hours after his leaving for the night, and I still don’t know why today was so rough.  Likely, I never will, although perhaps he’ll start to sniffle or sneeze or itch, and then we’ll have a cause.  For now, it just feels like two steps back.

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June 23, 2011 · 4:19 pm

Positive Feedback

Lately folks are looking at my younger and remarking on how much he’s grown taller .  Actually, he’s slowed down quite a bit over the last four or five months, thankfully giving his older brother a chance to stretch ahead a bit.  Being three inches apart at ages 14 and 9 stresses the older one out a bit, understandably.

I don’t see the growth, at least not until it’s time to get new pants and shoes for a kid.  In the summer, shorts just get a bit shorter, making linear growth all the less noticeable to the mom who sees the child every day.  familiarity decreases awareness of gradual changes.

If it’s hard with physical growth, it’s even harder with emotional changes.  It’s easy to get wrapped up in the challenges of the moment, whether it be constant nighttime nursing, refusal to eat all but goldfish crackers, obsessions with lines of vehicles, or a myriad of other behavior patterns.  It takes a conscious look back to the previous year or further to see the changes myself.  Or it takes an encouraging observation from someone sitting a bit further away from the scene.

We’re fortunate to have a homeschooling family of six down the street, and the children’s mom and I have developed a fine friendship as have our kids.  Our children play together several days a week, often in a group of five or more.  Bryce does best one on one: less to process, less relationships to navigate, etc.  While he often plays with two of the boys at the same time, the youngest of the trio places little demand on the older, generally content to be included.  But once the group grows beyond that, he’s liable to struggle.  With the move to outside play, the added burden of sports increases his stress.  He’s not terribly coordinated, and the rules that come with backyard sports can seem a bit chaotic and spontaneous.  Bryce doesn’t do chaotic or spontaneous, especially with rules.

Last week, my friend mentioned some changes in Bryce.  He’d actually participated in wiffle ball twice in the last week.  He verbalized his concerns about his physical skills, asking to substitute an action that was easier for him.  While he didn’t actually ask for the change, at least he stated his intentions aloud.  He also negotiated changes when he wanted to do something different.  He suggested a change in activity to the group, another child proposed a vote, and the vote led them to a different activity.  Okay, so the vote went his way, but this is progress.

I’ve debriefed these successes with him. He seems pleased to recount his successes, and on this occasion added that he said, “I’m sorry,” to his friend after an accident wiffle ball encounter.  That’s small potatoes for most kids, but he really struggles with saying those words.  I celebrated this achievement and we both basked in the glow of success.  We discussed what might have happened if the vote hadn’t gone his way.  He seemed confident that he’d have managed.  That confidence seems to be a step forward as well.

Other friends, aware of his diagnosis, also offer feedback.  Their reports are generally small:  Bryce looked at me when he talked to me today.  His voice seems quieter.  He seems more calm lately.  That kind of stuff.  I appreciate every word.

Up close, it’s harder to see those gains.  If I look back a few years, I can see them better.  He no longer defends his own possessions with the tenacity of a three-year old (that improved when he neared 9).  Over the past two years, he’s developed a strong reciprocal friendship with one of those very patient, tolerant neighbors down the street.  And most notably, his tantrums have vastly reduced in frequency and duration.  Some of this is the product of growth, some of his own awareness of his Asperger’s (more on that in another post), some from time with his therapist, and not a small amount from a few medications (more on that, too, later).

It’s not linear gains either, but rather a mix of plateaus and jumps, wholly unpredictable.  While I’ve discussed greeting folks for years, modeling the eye contact and, “Hello. How are you?” for years, prepping before walking up to the door of a friend, he’s yet to use that skill more than randomly and rarely.  Whether that’s too much to manage now or that it doesn’t make sense, I can’t say.  I’m not in his head.  Compromising with his friends and his brother, on the other hand, have taken good-sized leaps lately, although we’ve not worked on this skill as actively.  It must have been more important to him to figure that one out.

However it comes, I’ll take it.  Growth is good, especially growth that make him feel more comfortable in the world and in his own skin.  Thanks to all who’ve offered positive feedback.  It helps me see the small steps that add up to big leaps.

 

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June 18, 2011 · 10:16 pm

Social Skills Group: Dealing with the Loud and Obnoxious

Switching gears? Hmm.

Obnoxious and loud.  That was Bryce’s summation of the kids in his social skills group.  He’s attended all of three times, and made this proclamation on the way out of the room the first visit., in full hearing range of the other kids and their parents.

Inside, I laughed until I cried.  Outside, I managed a slightly squeaky and forced, “Oh, really?”  His therapist did me one better, suggesting he could learn how to deal with people who are obnoxious and loud by attending the group.   His brother snorted and rolled his eyes as he processed the irony of his brother’s reaction, but fortunately Bryce missed that display.  After all, he’s in a social skills group to learn what it takes to NOT be obnoxious and loud.

More politely, he’s there to learn the give and take of conversation.  He’s there to discover how to meet a person and make a friend, expressing interest in their interests even when he doesn’t find them interesting.  He’s there to pick the finer points of winning and losing a game, negotiating who goes first, and compromising about what’s played in the first place.  None of these skills come naturally to him.  Although he’s seen his parents, his brother, and plenty of kids model these skills for years, he isn’t wired to imitate that behavior.  Even with rather extensive coaching prior to get-togethers, it can all go dreadfully wrong if he overloads or feels wronged.

Like most of us, he doesn’t think well when stressed. Unlike many kids his age, he struggles mightily to place himself in someone else’s shoes.  (Heck, he struggles to understand figures of speech like, “putting yourself in someone else’s shoes, but that’s another blog post.)  This may be the part of Asperger’s that drives me around the bend (there’s another one) the most often.  It’s hard to see him digging in his heels (Keeping track?), able to only see the world from his point of view, unable to reliably read another child’s face and voice for anger, concern, disappointment.  It’s hard to see the other kid upset as well, often a bit cowed by Bryce’s high-volume diatribe.  It’s hard to see Bryce so upset and often confused by a situation, trying to gain some sense of control with his vocabulary and tenacious ability to talk for hours.  It’s near impossible to help him break that pattern once he starts being, well, obnoxious and loud.

Thus the social skills group.  These gatherings of a handful or two of children, often the same gender and close in age, can be led by a therapist, speech pathologist, or teacher.  The idea is to teach and foster those social skills that come naturally to most neurotypical kids.  There’s not evidence that they work, however.  After all, the group consists of a bunch of kids who don’t generalize well (a characteristic of kids on the spectrum).  Giving them a set of rules and practicing those rules in a particular room with particular kids may work there but not be easily applied to the outside world.  The Association for Science in Autism Treatment (ASAT) puts it this way:

Preliminary evidence indicates that high-functioning children with autism spectrum disorders who participate in social skills groups may increase their awareness of social cues and their understanding of how to interact appropriately with peers, but they may have difficulty learning to apply this knowledge in the context of everyday situations. Additional research with strong experimental designs is needed to confirm these findings.

So why bother?  Because I think he’s close sometimes.  Because he’s tired of hearing my voice when it comes to practicing manners, learning social skills, and controlling the level of his voice.  Because learning to deal with folks who are “loud and obnoxious” is part of growing up.  And because, according to his therapist, while it’s true that many groups don’t seem to create generalization, this one seems to work.  So after 6 months of one-on-one therapy with her, we’re switching gears (that’s four) and trying to apply some of the communication skills we’ve discussed ad infinitum in a somewhat real setting.

Since each group session ends with a five-minute wrap-up (that’s the last one) that includes the parents, I’ll have a chance to hear what skills were stressed and how the relations went (in general), including what my son did well and he needs to develop.  Parental input regarding desirable skills is encouraged, and after the last session, the group leader pulled us aside to discuss our goals. Bryce was unsure. I had a list.  It included lowering his volume, increasing the back-and-forth of conversations (less monologues), and making friends. And if he learns to deal with the “loud and obnoxious” element, that’ll be a bonus.  I’ve heard folks can be like that, even the ones you love.

(If I can’t get through an 800-word blog post without five figures of speech, it’s no wonder my little guy is so befuddled by me at time.)

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