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Making Doors

  • Posted on February 21, 2014 at 10:00 AM

As much effort as I intend to expend on changing the tract that Alex has been placed on, the long-term goal isn’t necessarily to “tract” him at all. You see, Alex has talent. Alex has had many disadvantages and has foregone the typical art instruction children receive in the United States for many years, yet he has an extraordinary interest and talent with visual arts.

These aren’t just the words of a proud mother. I know that I have little skill in assessing any form of visual art and even less aptitude in creating them. So, the best I could discern was to recognize that Alex’s art—indeed the art of all four of our boys—is better than anything I can produce, and to recognize (from the art training I have received) certain qualities that seemed rather remarkable. But, even to me, this didn’t mean much. So, I obtained the opinions of others who have more skill with assessing and creating visual arts. Turns out, I wasn’t wrong. In fact, the reactions I’ve gotten to Alex’s artwork (not to mention the other boys’) has been quite enthusiastic.

Now, as a professional writer, which is a form of art, I know how difficult it can be to make a career out of a talent and interest in a particular art form. Even when you have the advantages of encouragement, advanced schooling, and more or less “normal” interpersonal skills, advancing a career in the arts is a huge challenge. Many people try and more fail than succeed. The automatic conclusion is that it would be ridiculous to pursue such a path for Alex, because the odds are very much against him.

Yet, I also know that there are people with disabilities, even profound disabilities, who do pursue art as a career and do succeed in their endeavors. I also know that Alex experiences joy when creating his art and he experiences joy when sharing his art with others. Now, Alex experiences joy doing several different things—watching videos and swimming are prime examples. But art is one of the few things that he experiences joy when sharing it with others. This is significant in ways I can’t even articulate. If you get it, good; if not, well, then, I guess you’ll just have to take my word for it.

So, yes, the odds are long. Yes, it’s not something that will earn him a living right out of school. Yes, it’s something that will require special support just to make it possible. But it’s worth it. It’s worth pursuing. It’s worth it, because everybody deserves the opportunity to at least try to do what they love for a living.

So, you see, I’m not just looking for backdoors to open up a more acceptable tract for my son. I’m going to make the doors he needs to do what he loves.

Drawing Rules

  • Posted on September 20, 2013 at 10:00 AM

Will is thrilled to have a class dedicated to drawing. His drawing class has bumped PE as his favorite class of the day. Unfortunately, he’s not really enjoying either math class or his English or physical science classes. (Yes, he has two math classes this year—all year long!)

The real surprise is that he’s not enjoying his computer class either. He has Communications Technology. Last Friday, we got a call to inform us that Will was refusing to log on in class. My first thought was, “How is that he gets away with refusing to log on in class?” I mean, I couldn’t imagine even trying something like that, let alone having gotten away with it in school.

His advisor was recommending he swap out of this elective class in favor of study hall or study skills. I looked at Will and told him that he could do that, but if he did he would never be a video game programmer. I said this under the false assumption that this was a prerequisite of the programming class, because, when I filled out the schedule requirements, there was a prerequisite class to programming. I assumed this was it.

After I said that, though, Mark told me that the advisor told him that Will would still be able to take his programming class next semester. Later, after Will told me he’d decided to stick with this class, I told him what his father had said. “No, Mom, you’re right. I should do this. I’ll do my work.”

We’ll see how that goes. But Mark assured him that if we ever get another call saying Will refused to get on the computer at school, then he wouldn’t be getting on the computer at home either. Will got the message.

The Year Ahead

  • Posted on September 2, 2013 at 10:00 AM

Before the new school year begins, I wanted to take a moment to share what I hope we can accomplish this year.

Ben

I hope Ben adapts well to his new environment and that his new teacher is really committed to meeting Ben’s needs. I hope this year is focused more on academics and less on coping. I hope that by the end of this school year, Ben makes the academic progress he is truly capable of making.

Alex

I hope Alex gets into the communications clinic and that we successfully match him with appropriate communication equipment. I hope that he learns to use the equipment quickly, so that he can better communicate his wants and needs. I also hope that, by the end of the year, he’s graduated to using the equipment to communicate what he knows and what he’s learning, so that he too can make the academic progress he is truly capable of making this year.

Willy

I hope Willy adjusts to high school quickly and finds it a welcoming and enriching place. I hope we succeed in preventing or squelching any bullying that may occur. I hope that Willy gets enough of computer programming this year to know if he really wants to set his heart on becoming a video game designer. I hope his drawing teacher can help him further develop his artistic talents.

Brandon

I hope Brandon finds the right balance between school and work, and school and his social life, and that he makes school a bigger priority in his life. I hope that Brandon actually makes the effort to do his work, keep up with his classes, and get the grades he’s capable of getting. I hope Brandon discovers what he wants from his future and finds a productive way he can pursue it.

Stephanie

In turn, I hope to find the right balance among family, school, work, and leisure. I cannot afford to burn-out and I don’t want to let any of my responsibilities slip. I hope, by the end of this year, I prove that I am up to the challenge. I also hope to have two of the four books I’m working on published and available to readers by the end of this school year.

Mark

I hope Mark is able to find his joy and to fill his “school time,” when the rest of us are occupied, with something that helps him feel personally fulfilled.

2013: Where the Boys Are

  • Posted on January 7, 2013 at 9:00 AM

So, to start off the New Year, let’s take a quick look at where the boys are now and where I hope to see them going in the coming year.

Willy: Now

  • Willy is in last year of middle school.
  • His medication seems stable and his seizures are under control.
  • His mood is not stable and we’re looking into treating him for depression and/or anxiety.
  • Willy has some dreams of what he wants to do as an adult, but we haven’t made any concerted efforts to ensure he’ll be able to pursue his dreams, other than providing him with necessary accommodations to access his scholastic curriculum.

Willy: By Next Year

  • By this time next year, Willy will be in high school and I plan to make the transition as easy and successful for him as we possibly can.
  • I hope we can keep his seizures under control.
  • I hope we can stabilize his mood and help restore his self-confidence, his sense of self-worth, and his enthusiasm for life.
  • I hope we have a plan in place that will enable him to pursue the dreams he has for his adult life.

Alex: Now

  • Alex started middle school this year and seems to be adjusting reasonably well.
  • Alex is going to be assessed for possible seizure activity.
  • Alex will be assessed for assistive technology to help him communicate more complex feelings and thoughts.
  • Alex’s weight, eating, and growth are becoming worrisome again.
  • I have no idea how to help prepare Alex for life as an adult, but I believe that pursuing his art is a worthy goal and have been making small strides in getting him more exposure to art mediums.

Alex: By Next Year

  • By this time next year, I hope that we will have been able to meet Alex’s health-related needs, whether that means treating seizures or other neurological conditions and/or getting him back to the Feeding Clinic (if we can’t get his weight up and steady soon).
  • I hope to have a communication system in place that will empower Alex to communicate what’s going on in his head successfully.
  • With the communication component in place, I hope to begin discussing with Alex (instead of trying to decide on his behalf) what he wants his adult life to look like.

Ben: Now

  • Ben moved to a new elementary school this year to be placed in a program (special education environment) that was supposed to better meet his needs, yet we’re seeing a very similar cycle of escalation that shows us (at least me) that his needs are not being met.
  • Ben’s communication skills seemed to be developing at a quicker pace earlier this year, but now he seems to be sliding back into some of his more non-verbal habits.
  • Ben’s weight and health seem to be good overall, and even his sleep cycle is becoming more normalized.

Ben: By Next Year

  • By this time next year, I hope that we have, as a team, figured out what all of Ben’s educational, sensory, and behavioral needs are and how to meet them.
  • I hope to get his aggressive behaviors under better control by meeting his needs.
  • I hope we can get his language development and learning back on track.

So, that sounds like a lot. These are some pretty big issues to deal with, but I think with concerted effort and a supportive, capable team for each child, we can reach these goals and discover new and better goals to meet along the way.

The IEP That’s Up and Coming

  • Posted on November 12, 2012 at 9:00 AM

I thought I got through during Alex’s last IEP, his transition IEP. I thought this necessary change in schools would produce a positive change in programing. I thought the education part of Alex’s education that I’d been fighting so hard to get would finally become a priority. I feared that Ben being sent to a special program because of his behaviors would be a step in the wrong direction.

Instead, Ben is making great gains and sure to make more by the end of the year. And Alex’s program…

What is Alex’s program? I’m not entirely sure, because his schedule looks nothing like the IEP we discussed. Based on his schedule, you’d think Alex was on the fast-track to working at one of the special programs for adults with developmental disabilities in the next few years. Moving boxes, packing boxes, breaking down boxes…that seems to be what Alex is learning in school.

Reading, writing, math, science, social studies…those have seemed to take a backseat to Alex’s “education.”

I say “seem,” because I’m not sure. But I’m going to ask. I’m going to ask what progress they’ve made this year and what progress they intend to make, and then I’m going to shape their intentions to be what Alex needs. That’s the plan. Wish me luck!

2011: Resolutions or Goals?

  • Posted on December 31, 2010 at 8:01 PM

I believe in progress.  I don’t mean I’m politically progressive, though I am depending on the definitions you use.  What I mean is that I believe that people—as individuals—are here to progress.  We grow, we change, we develop—and, if we’re lucky—we improve ourselves in the process.

I don’t believe in New Year’s resolutions.  Relying on the New Year to reinforce commitments indicates to me that one’s commitment isn’t strong enough to face up to the challenges progress requires. 

Instead, I believe in goals.  Goals can be made during any point of the year.  I make goals, change them, and adapt them throughout the year.  And I work towards them.  I succeed.  I fail.  I grow.  I change.  I progress.  And I strive to improve.

Yet, despite my lack of belief in New Year’s resolutions, the change in year marks one of those times I re-evaluate my progress.  It’s not the only time, but it’s a pivotal time, because the New Year is potentially inspirational.  It’s a new start—one that relies solely on our perception, but a new start nonetheless.

One goal I have had is to write a nonfiction book tentatively entitled Neurodiversity at Work: A Manager’s Guide.  The purpose of this book is to prepare contemporary managers to cope with and capitalize on their neurologically diverse workforce.  Simply put, managers aren’t trained for this.  And I want to give managers a tool to improve their skills and awareness in this area.

Yet, I haven’t made much progress with this goal.  That’s got to change.  The New Year, with its fresh slate, is a good time to commit to that change.

So, I commit to you, my lovely readers, that I will post one book-specific post per month.  I commit to myself to follow up this book-specific post with book-specific work, related directly to completing the proposal for this book (a precursor to writing the book).

Another goal I have isn’t very well formulated.  I want to help my children grow and develop, but unlike many of my fellow parents of autistic kids, I usually don’t plan this.  Sure, there are IEPs and therapy goals.  There are even medical goals.  And while I contribute to the planning process and strive to achieve those goals, they are neither personal nor familial.  These commitments aren’t made from parent to child.

So, I also commit to you, my lovely readers, that I will post one progress report on each of my children each month.  I commit to myself to plan the kind of progress I want to work towards in that regard.  And I commit to my children to make my plans and my efforts wholly respectful, honoring the people they are and not simply enforcing “shoulds” and “coulds” on my children.

Now, I’d like to ask you:  Goals or resolutions?  What are yours?