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Grooming Civility

  • Posted on March 14, 2014 at 10:00 AM

Self-help and life skills are all a part of raising a civilized child. There’s a sense of conforming to the norm, because it is normal for a child of a specific age to be able to dress, feed, and wash up by himself, as well as performing regular hygiene and grooming tasks, like brushing hair and teeth. In addition, when raising a child with autism, obtaining these skills is important for independence and quality of life purposes. So, yes, we are conforming to society’s expectations in a way that the child may not initially appreciate.

The problem comes into play when we expect or even demand that these skills be developed in the same way and/or on the same timetable as more typical peers. Such expectations and demands only lead to mutual disappointment and frustration. I’ve seen parents who have, at least for the most part, maintained the same timetable by make significant adjustments to the way the skills are developed. I’ve also seen parents sacrifice the timetable by waiting for the child to develop these skills at his or her own pace. I’ve tried both routes with mixed success, resulting in a rather mixed approach.

In the end, the question is not whether we need to conform to society in these regards; the question is how much we are willing to conform to society. Where we draw the line, as parents, matters. It impacts how we perceive our children and how our children are perceived by others. More importantly, it impacts how our children perceive themselves. It impacts the levels of chaos and order that exist within our homes. It impacts the comfort and adaptability of our children. It impacts their quality of life with regards to how expectations and methodologies relate to their frustration, their aspirations, their self-direction, and their self-authority.

In the end, our children will become adults. In the end, our children will find ways to communicate their own ideas, their own beliefs, and their own experiences. As we judge where our own parents drew their lines in the sand, so too will we be judged by our children. If you doubt that for even a moment, take a look around at the dialogues of autistics adults that pervade the blogosphere.

So, whatever struggles you face today, I caution my fellow parents to keep this thought in the back of your mind: What do you want your children to say about you when they can? Don’t forget that respect others’ personhood is part of civility, too. The way you teach your children to do that is to do unto them what you would have them do unto others. Autism doesn’t change that.

Dressing Oneself

  • Posted on March 12, 2014 at 10:00 AM

Once the boys became toddlers, getting them dressed became a wrestling match. Pin and pull. One pant leg on. Pin and pull. Second pant leg on. If I was lucky, the first pant leg had stayed on. If not, then the child had pushed it off again in the struggle. Socks were the worst, however, with the occasional kick to the face. The biggest trouble with shirts was the hassle of getting the front of the shirt aligned with the front of the child. Then, the biggest difficulty was ensuring the child stayed dressed. Of all three, Ben was the most resistant to clothing and he’s now the only holdout. Ben will wear clothes out of the house, even at school now, but won’t wear them (for long) at home.

I once despaired of teaching the boys to dress themselves in a reasonably timely fashion. They’ve been able to do it for years. It’s like undressing, simply in reverse. But it could literally take them hours to dress themselves. Now, Willy does it in a flash. Alex will only dawdle through it for about ten minutes. Ben will get dressed pretty quickly—if he’s willing to dress himself at all, which is still hit or miss.

So, once again, it gets better. Developing skills helps, of course, but mostly it’s a matter of time. They come around, more or less. Then, of course, there’s Ben who will—as soon as he gets home—strip off his coat, his boots, his snowpants, his socks, his pants, his shirt, and throw them in a pile that is more or less “away.” The only deviation to this routine is the outer garments he’s wearing. Luckily, the pull-up usually stays on.

Independence Can Help

  • Posted on February 7, 2014 at 10:00 AM

Results from a recent study reveal a not-so-surprising conclusion with two different primary points:

For adults with autism, having the chance to work somewhat independently may lead to a reduction in symptoms of the disorder, a new study suggests.

The research puts new emphasis on the potential for adults with autism to develop and improve over their lifetimes, said study author Julie Lounds Taylor, an assistant professor of pediatrics at Vanderbilt University, in Nashville. (emphasis added)

Basically, researchers are discovering that autism symptoms are not static, even long after the supposed recovery period touted by many children’s therapy promoters. Adults with autism can make substantial, life-changing gains when given the chance. Even less surprisingly, that chance comes in part by the growth of independence, when that growing independence is properly supported and when the source of that independence involves “the right fit between a person’s abilities and interests and a specific job.”

I knew that! I live that!

Yes, yes, I know research is an important aspect of proving that to the world. But, as the parent of three children with autism, I know that their growth and development isn’t over just because they’ve outgrown the “recovery phase” that was drilled into my head when they were young. I also know that the way to further their abilities is to give the opportunities to pursue their interests, with support. So, I’m glad the researchers are looking and finding what I and many other autism parents have learned by living.

Independence: Conclusion

  • Posted on July 27, 2011 at 3:55 AM

I began considering what independence means around Independence Day here in the US. I considered how misguided I found our cultural obsession with independence to be, and then posted about what independence looks like for my family. Now comes the final question: What will independence look like for each of my children once they become adults?

Honestly, I’m not sure the answer matters. For one, it’s too early to predict. Based on their current developmental trajectories, Willy is likely to be a quirky, but reasonably independent adult; Alex is likely to more dependent on others for personal care needs; and Ben is somewhere in-between, as he usually is.

But what does it matter? I’m much more interested in knowing who they will be than I am in knowing how independent they will be. The more I think about it and consider the misguided ways we prioritize independent self-sufficiency, the more deluded I think it is.

We all need each other. Some need more tangible, quantifiable help than others, but we all need each other. Society and culture, as a necessity, don’t function without each of us. We all contribute. We’re all in this together. And the more of us there are who are willing to admit it and help each other in the ways that we can, the happier we all will have the potential to be.

And that’s what I hope for my children: to be happy being themselves.

Independence: Part 3

  • Posted on July 19, 2011 at 2:14 PM

American culture prioritizes self-sufficiency—one form of independence—when assessing human value, and by doing so our culture denies both the belief in equality and the importance of self-determination. I suspect this switch has a lot to do on the American eugenics program, but I’m not going to dwell on that. For now, distinguishing between self-sufficiency and self-determination is enough. Both are aspects of independence, but their place in our society has flipped in significance.

So, where does that leave us? What will independence look like for my family as my children grow up?

In order to try to project that I first have to consider what independence looks like for my family now. Will is the most independent of my three autistic children. At the age of twelve, he can do many things his peers can do. Alex needs a lot of assistance. While he’s becoming more self-sufficient in matters that do not involve communication, he difficulty communicating is still a significant barrier to independence. Ben is, as usual, somewhere in-between. In some ways, he’s very much the “little brother,” and is thus not self-sufficient. But his communication skills have out-paced Alex (he’s no longer considered non-verbal) and his get-into-trouble skills show a great deal of self-sufficient stubbornness, if not a great deal of compliance and understanding. (Why, oh, why must he play with my hand towels!?!)

Looking at the boys, however, is insufficient to properly project their levels of independence in the future. Mark and I are big factors in this. We are both capable of living independently, if it were just ourselves we had to care for. We don’t need personal care workers to meet our personal needs. Yet, I would not consider us self-sufficient. Of course, the money thing is an issue, because we’ve chosen to prioritize our children’s needs over the high-paying, 100-hour-a-week marketing jobs I am otherwise qualified for and because we don’t have the typical dual-income many American families have, we tend to run short on liquid funds when something big happens. More than that, we also need help meeting our children’s needs. We tend to have, between ourselves and among others, inter-dependent relationships.

So, if we wanted our children to live independent—meaning self-sufficient—lives, we’d have to become better examples of self-sufficiency ourselves. On the other hand, both my husband and I are examples of self-determination. I expect Willy will grow up to lead a life that is both acceptably self-sufficient (by society’s standards) and self-determined. Ben may need more assistance than is socially acceptable to be self-sufficient, but he will be self-determined. It’s Alex I worry about. Without an effective means of communication, his self-determination is at risk and so is his self-sufficiency.

It may not be the priority of our culture, but I am personally more concerned with empowering my children to be self-determined.


Independence: Part 2

  • Posted on July 17, 2011 at 4:07 AM

So, what does independence really mean? What is its significance in American culture?

Independence is “freedom from the control, influence, support, aid, or the like, of others.” In American history, independence was primarily a political matter. As a fledgling nation, we wanted independence from the control and taxation of the British Empire. I support this kind of independence. In our Constitution, we have also ensured another kind of independence: Independence from the government, which is manifest in the freedom to speak openly, to organize, to arm oneself, and—all together—the freedom of self-determination. All these are good things.

But I can’t help but think our obsession with independence is a bit misguided. Sure, independent thought and free-will, with minimal governmental obstruction, are foundations of this nation—which I wholly support. But our obsession with independence has gone far beyond that, while at the same time neglecting the basic tenets of our founding beliefs. We focus less on self-determination and more focus on self-sufficiency. The less self-sufficient you are, the less valued you are, and the less respected your legal rights become.

I could write a political post about how government encroaches on independent thought and free-will, and how as a democratic republic we should actively resist. But that’s not the focus of this blog and my past side-steps into politics on this venue haven’t gone so well. Besides, I’m more concerned about the ways we distract ourselves with assumptions of human value based on a person’s independent living status. As if whether or not you can hold down a job, button up your coat, or drive a car are the true indicators of your human worth—rather than a belief that we’ve all been endowed with unalienable rights and we are all created equal.

I’ve been told that this focus on independent living is rooted in our colonial history. If people weren’t independent, they didn’t survive. But is that really true? Granted, I’m a bit removed from colonial days, but as I understand it neighbors actually helped each other back then. That doesn’t sound very independent to me. You need a barn built? Sure, you could take weeks or months and do it yourself. Maybe you could, depending on your access to assistive technologies, such as winches and levers. Or you could pass the word along to your neighbors and get a bunch of people together and get the barn built in a day. Which do you think they did? I’m sure some people made rudimentary barns and houses without help, but when help was available they used it. Why? Because life is better when you can and do get the help you need, whether it’s from technology, other people, or both

I believe in independence. I believe people should be empowered to do the things they can do, and that often means providing them with technologies and education to get them to a point of actionable power. Then, once they reach the point of success, it means stepping back and letting them do it. But, before you get to that point of success, you do need help. You need to learn, you need tools, and you need people to help you. That’s true whether you have a disability or not.

Ah, but the difference is some people, when given the tools and assistance they need, can become more independent then others! Really? How much of that is genuine potential, or lack thereof, and how much of that is appropriateness of tools and education? We assume some people are more able—or have more potential for “ableness”—than others. Yet, as a culture, we resist providing those who are deemed less able with appropriate technological and educational adaptations. How can we really know what people are capable of if we only provide a certain set of standardized tools and we only provide those to the people we think can use them? Does that reflect a belief in independence or a belief in standardization?

Independence: Part 1

  • Posted on July 9, 2011 at 6:21 PM

This past week we celebrated the United States’ independence from Britain. All across the country people celebrated with parades, fireworks, parties and barbeques. My family spent some time with extended family at my in-laws’ cottage. But as we celebrated our independence, I couldn’t help but think about what independence means to my family and the many people like us throughout this country. One thing is for sure, we weren’t the ones setting off fireworks, though there were plenty of them going off around our neighborhood. Just listening to these relatively distant loud bangs and pops or seeing the flashing colors was enough to aggravate my own senses. I can only imagine how much these stimulations irritated my children; though I know Alex and Ben found it difficult to sleep while all of that was going on.

My reflections on the meaning of independence were a bit more basic. What is independence? Why is it so important to people in this country? What will independence look like for my family as my children grow up? What will it look like for each of my children once they become adults? I tried to find a way to fit this all into one post. Obviously, I failed. So, consider these topics on your own and in the next few posts I’ll relate my thoughts on each of these topics and try to pull it all together into some kind of conclusion.

I know that’s not very reassuring, but try to stick with me. It should be an interesting ride!