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Entries in Asperger's (5)

Sunday
29Nov2009

Going Through

She had no idea where her body was in space. She would get out of the car, and back up into on-coming traffic. Not meaning to, she'd gradually run you off the sidewalk as you strolled beside her. She needed something that would help her be in her body.

In my twenties, I studied martial arts. I'd never been the most coordinated person. I could not stand on one foot for any length of time. Almost twenty years later, I maintain the gains in balance and coordination I acquired from just under two years of martial arts training with a phenomenal instructor.

It would be great for Riley, but who could possibly teach her?

Observing various classes, none were a good fit. Too macho. Too wild. Too punitive. Too BS.

Then we found her. An instructor who runs a therapeutic school. But would it still be good "karate?" Would it be real martial arts? I watched with a critical eye. The teacher had good form. The upper belts did too. I let out my breath and signed Riley up.

First day, Riley lasted five minutes before having a meltdown. It all went so fast. She was overwhelmed, confused. She screamed and begged to go home. She sat on my lap sobbing. The teacher did not say, "Your child is a hopeless case, she can't come here." She said, "Let me work with her one on one." They did, until Riley was ready to be folded into a group.

The first exam, Riley tested for a stripe (half way to her yellow belt). She spent most of the time in the teacher's office crying, went out to do her form, then straight back in. Terrified.

Her second test. Not so bad. She made it without a problem until the end, when a judge unfamiliar to her gave his feedback. She took it to mean she did a terrible job. She did not "get" all the positive non-verbal cues coming her way, the smiles, the nods. She only heard what needed improvment. Devastated, she ran from the floor sobbing.

Third test. She stayed with the group and made it through her form, and through the feedback. She was scared, but she did it. Then came board breaking, and she choked. She could not muster the power. She flinched every time, and wound up merely tapping the board. Her teacher had to help her, and she ran crying from the room, feeling like a failure, a "baby." She'd worked so hard and came home defeated.

Last week, she strutted in like she owned the place, Jingle the new service dog by her side. She smiled as she lined up with the other students. She kept up with no problem. There were lots of kids behind her rank-wise, which seemed to make her feel proud. She's been at this year round, for almost 15 months.

Before the test we talked about how the judging instructor has been studying martial arts for decades, and how his feedback is like a gift from his heart. He gives it to kids because he cares about them. He's not saying she's not good, he's saying he values her enough to want to help her be an even better martial artist(how had I never spelled this out before)? We talked about rejection letters in writing, and how it is actually a compliment when editors care enough to give writers personal feedback.

The students took a bathroom break after forms, before board breaking. Riley came over to pet Jingle and I whispered in her ear, "When you get up there, don't stop at the board. Go way beyond it. Go through it."

"Okay," she nodded, stroking Jingle's ear.

Below is the face of a martial artist. A martial artist who aced her test, and broke a board with a right side kick, all by herself.

She went through it.

And the only tears shed that day were mine.

 

Michelle O’Neil has contributed to A Cup of Comfort for Parents of Children with Autism, and Special Gifts: Women Writers on the Heartache, the Happiness and the Hope of Raising a Special Needs Child. She has written for Literary Mama, The Imperfect ParentAge of Autism, Cool Cleveland and some of her blogs about Riley's new service dog Jingle have recently been picked up by The Bark! She blogs about family, personal growth, spirituality, Asperger's, and the Law of Attraction at www.fullsoulahead.com.

 

Tuesday
11Aug2009

How do you hold a moonbeam in your hand?

The Kid is extraordinary. He is, despite his limitations, destined for greatness, I am sure of it. He can create rich, elaborate worlds of his own creating, that make me wonder if he is not going to write some beautiful and wildly imaginitive book that will take its place on the shelf with the likes of Rowling or Tolkein. He is smart and curious, with a knowledge of the world and the places in it, a thirst for knowledge that even though I was precocious and smart as a child, so far surpasses anything that I've ever been capable of, that I know this quality was bestowed to him from something that doesn't even approximate my genetic gifts to him. He is socially challenged, and yet charismatic. He pulls people into him in a way, that ever since he was a little guy, has won him devoted fans. The Kid has won the heart of people in his life, in ways that I never expected would happen. A local college baseball player visited his preschool class, five years ago, and absolutely fell head over heels for him. A student teacher in that same preschool became his biggest advocate for a while there, she still writes him letters and emails. This summer, several of his high-school and college camp counselors have asked if I would keep in touch with them and bring him to visit them during the long hiatus until next summer.

Of course, no one holds him in higher esteem than I. I see him at his very best: when his perseverations on drawing become his worlds and I get the explainations; I get his pillow talk questions about how the world works, and get to hear his fabulous responses when I ask him what he thinks of the world. I see his compassion, I see his joie de vivre. I see his brutal honesty and his passion.

In two weeks, I'm sending The Kid to fourth grade.

Very few of his "peers" or teachers see all of these wonderful things. They get to see the very worst of him. His slow reading, his fine motor delays, inattentiveness and impusliveness that keep him from showing them the workproduct of his brilliant brain. They see a frustrated kid, a fiery temper, a kid who can't handle it at all.

I have spent the last few years wondering what we could do to make him do better at school. The cognitive behavioral programs, adding OT to his day, monitoring his social interation, controling his environment.

But now I'm wondering if there is just no solution. He is too exceptional for a system that is set up for the non-exceptional. I'm not bragging here. I'm not saying that he's so gifted and too smart... Except that I am, but I do it in fear. What happens to a system that caters to the lowest common denominator? Or, the average denominator? What happens to the exception?

How long will the hammering of my son's square peg in the school's round hole last? And will it ever result in blunting his bright edges?

I have no place I'm heading with this. I am just wondering what will work for him. This summer has been amazing for him. He's had an explosion of interaction and maturity, but his beautiful, extraordinary self is still his best feature. But it does remain one of the main reasons he will continue to struggle in school.

Sunday
03May2009

Okay

I've been thinking lately that maybe I don't belong here. Things have been so good for so long with Taz that I'm hardly able to remember when they were difficult. I don't know if he is growing out of his issues, or if not eating eggs and dairy for so long has had a profound effect on his nervous system, but he just seems so normal lately.

Today I brought him with me to a meeting I had to go to because his dad had other plans. I expected we would not be able to stay without disrupting the meeting, but I figured I'd give it a shot. To my extreme surprise, he sat quietly beside me doing mazes and connecting the dots in a workbook. He even whispered when he needed to ask me questions (this is a kid who has not known the meaning of the word quiet before now). He sat in one place without causing a big scene for probably 45 minutes (!) while the adults had a discussion. It was absolutely astounding. I felt like I had lost my child somewhere and ended up with a stray - a stray with amazing self-control.

Yesterday I watched a movie called Mozart and the Whale. Have you seen it? It's not really a very good movie, but it does provide a sort of tutorial on Asperger's. It reaffirmed my belief that I am probably an Aspie, and so is Taz. But since I don't plan to put Taz in a traditional school environment I just can't see how Asperger's is a disability, exactly. Maybe that's because I don't necessarily recognize when Taz's (or my own) behavior is causing difficulty in social situations.

But maybe we can just play that by ear. Maybe it's okay for now that we don't really know how to make friends. Maybe, like the main characters in Mozart and the Whale, we can just be our quirky selves together and not worry too much about the rest of the world. Maybe that's okay. Maybe we're okay.

Wednesday
11Feb2009

Least Restrictive Environment Anxiety Attack

I just cracked open a beer. Not in celebration, my friends. I'm not quite to the point that there are tears in my beer quite yet (that doesn't happen til the after the third beer, and if I choose to hit the bottle of scotch in the cabinet). Truth is, I'm having a kind of anxiety attack at the moment.

In 12 hours, I'll plop down in a teeny tiny chair in a school resource room to plan my son's transition to a less restrictive classroom. I've been fighting for this transition for about a year now, and it's finally happening. He'll could move into his new school by the end of the month, depending on our negotiations tomorrow.

The Kid is the smartest, most fabulous child I've ever had the chance to know. Unfortunately, he struggles at school in almost every way possible. He's been diagnosed with ADHD and Asperger's Syndrome, and with those things come a heavy dose of sensory integration dysfunction, with a dash of anxiety. He's been in a day treatment / center based program of some sort or another since the fall of 2006. We're moving him to a self-contained classroom inside of a typical elementary school. He'll have access to typical peers for the first time since he was six.

Hold up. Side note: Who talks like that? "...access to typical peers?" Oh wait... Us. Hopeful parents, parents who hope their kids will have nice interactions with said typical peers... we talk like that.

The Kid in school needs constant support to stay on task, to transition from one thing to another; he needs a scribe to write for him, unless the purpose of the exercise is to actually practice the motions of writing; he needs a continual sensory diet to regulate his body; he needs support for social interactions and instruction in how to navigate the wild world of unpredictable conversations, games and social expressions.

I used to be that parent. You know, THAT parent. The parent that fought and fought and fought and fought AND fought and fought for the services that my son needed. It seemed as if each and every intervention I researched and tried out at home had never been heard of, had never been tried, had never before been put into an educational setting in my son's school district. They were really 'revolutionary' ideas, like using computers, adding occupational therapy to his day, providing positive support instead of punishment for behaviors. I, of course, know that what I proposed wasn't truly revolutionary, but it felt like I was coming out of left field, completely on my own for every school meeting.

Something happened last year. I have no idea what it was, but the school clicked with me. Finally. They took my suggestions and listened to my beliefs. A true team was formed, not just because they did what I told them to do (because they didn't in every case), but because we really started leaning on each other and considered each other authorities. They started providing OT. The instituted the scribe and the use of the computer for writing.

The Kid also went through an amazing tranformation at this time, which is a story for another day, but ultimately we got the right diagnosis, and the school and I started to see eye to eye. Everything came together, and The Kid has had unabashed success ever since.

Before these interventions, The Kid was a constant meltdown waiting to happen. His melt downs were due to sensory stimulus, social misfiring and a poorly planned behavioral plan. Once we got the other pieces put into the puzzle, his melt downs and his difficult behaviors essentially ceased, and peace was restored.

 

So now I sit here and ponder going back to a regular school. Of course, it's a regular school with a behavior classroom, but still. My experiences with all other school environments other than his current one have been a series of disappointments and continual uphill battles.

I'm trying my very hardest to keep in mind that I'm a proven expert on my child, and that his current school will back me up tomorrow. Deep down, I have the fear, the real, palpable fear, however, that they will be like all the others... All of the other schools that thought they knew better than I did, that had a "proven" system and that The Kid would eventually buy in to their program, rather than building a program around The Kid.

I'm shaking in my boots over here.

I know I have the fight in me. It just comes. But please, God, don't make me use it. Please.

I need to get another beer.

Molly posts, unregularly, at www.soapywater.blogspot.com.

 

Tuesday
03Feb2009

Relativity

It’s when we’re at home that my son, Taz, has problems. If he is not continually and directly engaged by an adult (or a television if we’re too exhausted), he starts bumping into walls, crashing into and climbing on furniture, doing headstands on the couch, running, tripping, yelling, and throwing things.

 

On the other hand, if we go on a three hour hike in the wilderness, he is calm and focused the whole time. He can balance on stepping stones to cross a stream without getting wet. He thinks of games to play in the dirt, and can play them for multiple minutes.

 

It’s when we’re at home that I have problems, too. If there’s a child who is bumping, crashing, climbing, headstanding, running, tripping, yelling, and throwing - I lose it. I need a certain sense of order, at least a little bit. I need the people around me to not be continually injuring themselves. I need occasional moments of peace and quiet.

 

Sometimes I fantasize about living in the wilderness, like where we hike, or maybe on a ranch. I could open the back door and nudge Taz outside anytime he started bouncing off the walls. He could wander and explore, and I could watch him from the kitchen window. All his needs (and mine) would easily be met if we lived on a ranch.

 

In the real world, parenting Taz is extremely hard, but I don’t know if he really has special needs. From the time he was born I suspected something was different about him. He was absolutely active alert (as described by Linda S. Budd) - he did the commando crawl after we brought him home from the NICU when he was only a week old. He was most definitely high need (as described by Dr. Sears) – he wouldn’t (and still doesn’t) tolerate being left alone even briefly. He was extremely needy, yes, but he was not... disabled. Sure, he almost never slept and was constantly injuring himself, but according to the milestone charts and the pediatrician’s evaluation he was developmentally on track.

 

So why was it so amazingly difficult to parent him? Why was he so unhappy? Why was I feeling like such a failure?

 

I tried every method in every parenting book for creating stability in our family, and yet, nothing was working. Our lives continued to feel upside-down, as they had since the moment of Taz’s birth.

 

I began to look inward. The other moms I knew did not seem to be struggling the way I was, and no one else seemed to think anything was unusual about my son, or if they did, they didn’t say so. Maybe it was me who had the special needs. Maybe I was the one who was disabled. Maybe I did not have the skills to be a parent at all.

 

I researched obsessively. I alternated between trying to find other children who sounded like my son and trying to find other parents who shared my feelings of incompetence. I considered my history. I thought about my own difficulties growing up.

 

One day as I was researching I stumbled upon some information about Asperger’s Syndrome. I considered the possibility that Taz had Asperger’s only briefly because, well, he was three. I figured that three year olds are generally pretty weird when compared to people with fully formed brains, and how could I really know how much was abnormal and how much was just three?

 

I decided not to pursue a diagnosis for him, but realized that the Asperger’s criteria applied to me. I tried it on - I proclaimed myself “a mom with Asperger’s.” It seemed to really fit and I finally had an explanation for the difficulties I had been having. It also allowed me to accept and embrace my parenting problems as my own.

 

I still don’t know, though. Sometimes I think maybe this is all in my head. I really don’t know what’s normal and what’s not, and even if Taz really is atypical I don’t know if I’ll ever be ready to pursue a diagnosis for him. I don’t want the experts to tell me what he should be like because even though parenting him is really hard, a part of me still believes he is perfect just the way he is. He certainly would be... if we lived on a ranch.