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Disability Identification

  • Posted on January 9, 2015 at 10:00 AM

I’m reading Nothing About Us Without Us by James I. Charlton. One of the topics he covers is disability identification. As the argument is presented, one of the biggest challenges of the Disability Rights Movement (DRM) is getting people to both identify with their disability and their peers with disabilities and to feel empowered; because, dominant cultures assert that disability is weakness and inferiority.

As the mother of three children with disabilities, it was easy for me to reject the idea that my children were weak and inferior. I value my children as they are for who they are. It was easy to recognize that, yes, they have disabilities, but no, their disabilities don’t mean what the dominant culture says they mean. This is especially easy when confronted with the dominant culture’s willingness to see children like mine as disposable, where parents who murder their kids are the real victims. That makes it really, really easy for me to reject the dominant culture wholeheartedly, because I just can’t find it in my heart to sympathize with parents who kill their own kids, let alone empathize with them.

As a woman with a newly diagnosed disability, it’s a bit harder for me to reject the idea that I am weak and inferior while still acknowledging my disability. Really, the only thing I have going for me in that regard is that I was already primed to reject the dominant culture. When you’ve lost abilities that you once had, it’s hard not to see yourself as “less than” you were. I don’t have the same physical capacity I once had, but since I was never a very “physical” person, I can handle that. But I don’t have the same mental capacity I once had, either, and that’s much harder for me to cope with, because I was and am a very “mental” person.

I think a lot. I think when I work. I think when I “play.” I think instead of getting bored. I am a nearly endless source of my own “amusement.” I hate the fact that I lose track of my own thoughts. I hate the fact that I can’t remember things as readily as I used to. And I hate the fact that fatigue and cloudiness interferes with the way I want to live my life.

I can deal with the pain of fibromyalgia a lot easier than I can deal with the mental impact. There is part of me that sees that impact as making me less than I was. For that part of me, acknowledging my disability is acknowledging that I am less than I was. But there’s another part of me that knows that this struggle misses the point.

When people without disabilities regard people with disabilities as being “less than,” they’re not talking about being less able, they’re talking about being less human. The dominant culture treats people with disabilities as if they were less human, less valuable, less worthy of life, of rights, of support.

I am less able than I was, but I am no less human, no less valuable to my family or my clients, and no less worthy of my life, my rights, and the support of my fellow human beings.

This is simply true.

I could make it a matter of arrogance and point out that I was more able before my disability and that I am still more able than most of humanity with regards to the things that I value. I am still more able to handle three children with autism while respecting them and nurturing them into adulthood. I am still more able to write a damned fine piece, whether it’s a blog post or a web page or a book. I am still more able to create a loving, sustainable marriage with a partner with bi-polar disorder. I am still more able than anyone else to live my life.

That’s true, too; but, it’s not the point.

The point is that people with disabilities should feel free to identify as having a disability without shame and without being made to feel less human. The point is that people with disabilities should not be ashamed to associate and affiliate with other people with disabilities, or even with other people without disabilities. Humanity isn’t measured by degrees of ability. Humanity is an either/or option. Men are human. So are women. But gorillas aren’t. Dogs aren’t. And the fact that I can’t remember the right word(s) to describe the distinction doesn’t really matter either.

We are all human beings, regardless of our abilities and our disabilities, and we all matter.

 

 

(This is not to be construed to mean that we should be free to go around killing gorillas and dogs for fun, because they don’t matter. Animals matter, too. So do plants, for that matter. It’s just that, in my opinion, people matter more.)

(Now, I’m going to go ask my husband what the word(s) I can’t remember are, because it’s bugging me that I can’t remember. Apparently the words I couldn’t remember are binary distinction, but Mark doesn’t think it works, because there is more than one type of animal, so it’s not binary. But either/or and yes/no are binary, and that was the point I was making, so I’m going to stick with the thought that refused to be pinned down.)

It’s a Matter of Trust

  • Posted on September 10, 2014 at 10:00 AM

There are those who believe that people with autism, i.e. adults with autism who have the resources to self-advocate, should lead the discussions and decisions related to autism. Many of them have expressed it this belief as a matter of logic; others have expressed it as a matter of justice; and others have demanded it as their right. Those outside of these circles sometimes see this demand as self-advocates wanting to wrest the decision-making powers from parents and researchers and practitioners.

There is some truth to their claims on these powers, but there is also some untruth to these claims. With regards to researchers and practitioners, it’s a matter of scientific practice and scientific integrity. They want to control their own efforts, and they have a point in that regard; a scientist should not be forced to study something that does not interest him or her. Fortunately, the public doesn’t have to fund the objectionable research particular scientists may wish to engage in, but that doesn’t mean they won’t find funds elsewhere. But, for the moment, I’m not concerned with researchers or practitioners.

As a parent, I empathize with the position of parents. That position can easily be summarized: You don’t represent our children. Whether we’re talking about adults with autism or researchers and practitioners, the truth is that you do not represent our children, no matter how much you might want to do so. If our children are of age and have the necessary resources to self-advocate, then they can self-advocate and then we have to accept their rights to do so. If our children are not of age or cannot advocate for themselves, then we have the right and responsibility to advocate for them.

For some parents, it truly is a matter of power. Some parents continue to exercise excessive power over their children long after their children are able to engage in self-determination, self-advocacy, and self-fulfillment. They actively seek to deny their children the necessary resources to self-advocate in an attempt to maintain control of their children; they may also actively discourage self-advocacy. For the moment, I’m not concerned with them.

I’m concerned with the parents who advocate for their children because life has taught them that no one else will do so. I’m concerned with the parents who have been burned by school systems, medical facilities, and governing bodies. I’m concerned with the parents who know that their children’s interests are threatened and who stand up to speak out against those threats.

We will not let you advocate in the names of our children, because we don’t trust you. Our ability to trust has been damaged, assaulted, and betrayed. We’ve learned the hard way that “the system” doesn’t really protect our children’s interests unless we advocate for them. We recognize that you may be well-intentioned, but that doesn’t mean that you know what our children need. Furthermore, we recognize that you may not be well-intentioned; you may be self-serving and we know what serves you does not necessarily serve our children.

If you earn our trust, then we can cooperate with you and even collaborate with you. But we cannot step aside. We cannot leave the work for you to do. Our children need us to speak up. We cannot trust you to do so.

Nabi vs. Kindle

  • Posted on September 25, 2013 at 10:00 AM

So, Ben’s Kindle Fire refused to charge. I’d lost the information about the warranty we had and misjudged the time left on our warranties. I also had my student loan check. Flush with cash and in a minor crisis, I ran out to Target and bought a Nabi. I’d been looking, so I knew it was a Nabi I wanted and not another Kindle Fire.

So, why a Nabi:

  • I got the Nabi for the same price as a Kindle Fire.
  • The Nabi comes with a wrap that protects it when dropped. (The Kindle Fire doesn’t.)
  • The Nabi comes with kid-friendly programming already loaded on, including Veggie Tales. (The Kindle Fire doesn’t.)
  • The Nabi was built with children in mind, including children with autism. (The Kindle Fire wasn’t.)
  • The Nabi was programmed with parental oversight in mind, blocking access to undesirable sites automatically. (The Kindle Fire wasn’t and I can’t figure out how to make it do it.)

When I can, I’ll probably get Alex a Nabi, too. For now, I have managed to contact Amazon about the Kindle that will no longer charge (Ben’s) and the Kindle that will only charge up to 30% (Alex’s) and both are being replaced.

So, it all goes back to Christmas. My very generous brother bought my family our first Kindle Fire. Mainly, it was for me, so I could read e-books. “But the boys can use it, too, of course.”

The boys loved the Kindle Fire so much that they took it over. It was so sought after that I purchased a second one the first chance I got. Now, with Ben and his Nabi and Alex and his Kindle and an extra Kindle on hand, I finally get to read those e-books.

I consider it a win-win all around! But, when it comes to the boys, the Nabi wins out over the Kindle hands down. When it comes to me, I want the grown-up toy.

Review: A Cup of Comfort for Parents of Children with Autism

  • Posted on July 18, 2012 at 4:19 PM

I received an unexpected package a while back.  One day I went into class and a box was waiting for me, care of my graduate school advisor.  Inside were two books and a card.  Apparently, my advisor had talked with a former student and I came up in the conversation.  The former student, who is also the mother of a child with autism, sent me two collections in which her writing on her experiences raising a child with autism had appeared.

A Cup of Comfort for Parents of Children with Autism, edited by Colleen Sell, and published in 2007, was one of the two books.  Mostly, the writer was trying to make a connection—and she succeeded.  I’m reviewing the book because it’s just part of what I do.

First, though, I must caution my readers.  I don’t review a whole lot of memoirs and have yet to review an essay collection on this site, mostly because I avoid them.  Early on in this beautiful mess, I received (and purchased) many memoirs.  Most of the stories were dark, degrading, desperate attempts to find a cure for their child’s autism—some even claiming to have succeeded.  I got jaded on memoirs like that pretty fast.

So, when making any kind of recommendation, especially when a book promises “Stories of Hope and Everyday Success,” part of what I’m looking for is a break from this effort to capitalize on the darkest possible view of autism.  I strongly prefer books that challenge the preconceived notion that autism is some horrible thing that is done to unwitting families—a malignant force.  In my experience, prejudice and stigma is the much stronger, much more pervasive malignant force.

I started with the writer’s story, of course, and responded to her.  (You can find Leaving Literalville on page 176, and it’s a very good essay, highly recommended.)  I have since gone back and read the whole thing.

I was pleasantly surprised by how well the promise of this book was fulfilled.  Most of the stories were written by parents who had come to see the value and worth of their children, and had either always cherished them just as they were or had come to do so.  Of course, there were a painful few who boldly claimed they still needed to cure their children—and that seems to rather discredit their claims of acceptance and value, but, then again, it’s impossible to know whether these parents have thought about what that cure might cost their child.

What should a reader get from such a book?  Tears, smiles, laughter, joy, a sense of renewed hope and a feeling that accomplishments are possible.  Yup—it’s all there.  Most of the stories were fresh and compelling.  A few dragged.  A few seemed like the writers’ were trying to force what they really wanted to write about within the confines of the anthology’s objective.  But, mostly, I would say the book was a success.  A few stories surprised me.  Others made me wonder.  Overall, I found most of them familiar and uplifting—or at least not depressing.

One of the things I really and truly love about this piece, however, is the wide selection of points of view represented.  It seems most of us gravitate towards those we agree with, and there are some pretty compelling reasons for that, but in order to grow we need to be challenged.  We need to look at things through different eyes, at least for a while.  That, of course, doesn’t mean we don’t have to like what we see.  We don’t have to get comfortable in that point of view.  But the people we disagree with deserve to be heard, too, and maybe if we all did more listening (or, in this case, reading) we’d be able to work together much, much better.  Imagine what we could accomplish then!

The Elusiveness of Sleep

  • Posted on August 15, 2011 at 3:19 PM

As the mother of three children with autism, each of whom have had sleep issues of their own over the years, I find that one of the unintentional—or perhaps involuntary—sacrifices I have made on behalf of my children is the benefit of a regular sleep cycle. Though it’s rarely an issue now (admittedly, we had some echoing of it early this summer), once upon a time I regularly got between three to five hours of sleep, and that’s it. (When I included that in a fiction story, my professor circled it as a potential “factual error.”) At that time, five hours was the most Willy would sleep at a time (and if he napped, his brothers were almost always awake, so I still couldn’t sleep). At that time, my husband was working, and he was depressed, so he could rarely help me get more sleep. In fact, those crazy-making months were one of the major reasons I started building a better support network.

One of the strangest things about this is that my body learned (my mind happens to disagree, but that’s another matter entirely) that it could function on three to five hours of sleep. When the need arises (as it occasionally does, even now) my body will revert back to that time-frame, over my mind’s strenuous objections.

You see, as I said, my mind disagrees with how much sleep is required. For mind to function—which, btw, is necessary for a professional writer, go figure—I need at least six (preferably seven) hours of sleep. So those times when my body kicks into sleep-dep mode, my mind is deprived of sufficient rest to do its tasks, even while my body can keep up (more or less) with the boys and the chores.

Another detrimental effect of all of this is the lack of a regular sleep pattern. I cycle between day and night, sleeping when I can and working when I can’t. I’ve tried melatonin, sleeping pills, and herbal remedies, but I can’t seem to regulate my sleep cycle for more than a week at a time.

This makes scheduling certain things rather difficult. I can’t really plan ahead and know I’ll be awake and ready to go. BUT that’s also where the 3 to 5 hours of sleep and the sleep cycle irregularities kick in. If I have something scheduled and need to be up, even if I have not succeeded on getting myself on a schedule that makes it seem right, I can usually make the temporary switch.

Predictably is the key, however, to getting certain things done, and it’s the key I lack. For instance, when I first wrote this post I slept Friday night to Saturday morning like a “normal” person. I got a good amount of sleep and was asleep at night and awake during the day. Then, I pushed myself a little late to spend some quality time with my mom, and Mark had a sleepless night, and so I went to bed at 1 a.m. Sunday morning, slept for two hours, and woke up and stayed up, because I couldn’t get back to sleep. I didn’t make it a full day. When Mark was ready to be up, I went back to sleep, and got back on the “night shift.” ***I, unintentionally sabotaged my mom’s sleep Friday night, so I wouldn’t blame her in the least for the “oops” in my sleep. Besides, it was my choice.***

The funny thing is, after my two hour nap, I was productive. I got some household work done, some writing work done, some miscellaneous work done, and I was okay. I was effective. So, basically, my body and brain are semi-erratic and rather unpredictable. But it works! Sounds kind of like my life raising children with autism.

Stand With Whom?

  • Posted on January 14, 2011 at 6:17 PM

I recently read a post by Rachel Cohen-Rottenberg over at Journeys with Autism entitled “Autism Parents: It’s Time to Stand Up With Us.”  My reaction to this post was mixed.

Rachel starts off addressing a very specific issue, namely parent who make comments like:

How disappointed the person is to have an Autistic child

How angry the person is that his or her Autistic child isn’t “perfect” (and yes, that word gets thrown around a lot)

How altogether unfair it is not to get the child the person dreamed of

How getting an autism diagnosis is like finding out that someone has died

How autism is analogous to a fatal disease

Regular readers of this blog (and probably most irregular readers, as well) know I am not one of those parents.  I do not make those comments.  I believe those comments stem from parents focusing on themselves when they should be focused on their child.  Self-centered parents make for maladjusted kids, regardless of their diagnosis or lack thereof.  So, know that I am not defending these parents in any way.

Rachel goes on to ask:

Why do these people say these things? Do they think we’re not listening? Do they think we don’t have feelings? Do they think, in some secret place in their minds, that we really are second-class citizens, of no particular importance? Or do they consider us such a burden that they’ve decided that their feelings trump ours?

I’m totally on board with that.  Those questions—and the way she develops them—are important, worthwhile questions that stem from a very painful experience.  I get that.  I really do.

Then, Rachel turns this reflection around by asking: “What can we do to stop this from happening?”  Considering the title of her post, “Autism Parents: It’s Time to Stand Up With Us,” I think we can assume the conclusions she draws.

But—and this is where I obviously stray from total agreement—the trouble is it’s much, much more complicated than that.  See, the questions Rachel asks and the conclusion she draws creates the same line in the sand that those parents create. 

It’s us/them thinking.  And that is the problem.

The challenges autistics present to society and the challenges society presents to autistics are situational.  A great big part of this awful situation is us/them thinking.  The us/them thinking starts in the form of bigotry and misunderstanding, which leads in turn to us/them thinking in the form of autistics versus non-autistics. 

It’s not us versus them.  It’s all of us. 

You see, I am not neurotypical.  I do not identify as neurotypical.  But I’m not quite autistic either.  And, you know what, I’ve stopped going on certain autism blogs because of all the hate directed at me for not being one of them.  And I am one of those people Rachel hasn’t seen calling out to other parents of autistic kids and telling them they language they’re using is demeaning!  Yet, I’ve been hated off autism sites for not being autistic.  That’s us/them thinking.

Rachel cites many other social movements.  She states that it takes people on the inside and the outside of those groups to evoke the kind of social change that is necessary.  She’s right, but that doesn’t just happen.  And it doesn’t happen by saying “stand with us.”  It happens when the people involved—both the people within and the people outside the minority group—identify more with being people than they do with being inside or outside the minority group!

So, when Rachel says, “stand up with us,” the “us” should refer to fellow advocates.  Unfortunately, that doesn’t seem to be what she means.  Rachel ends her post: “So if your heart is broken by the way the world treats your children, stand up for them by standing up with us. Their fate is inseparable from ours.”

I’m sorry.  I don’t agree.  Our fate is inseparable.  No us, no them, and no yours.  You cannot unite by dividing.  You cannot join by categorizing.  You cannot call together by alienating.  The issues we all face are situational; it’s not them versus us or us versus them.

*takes a deep breath*

See, I prefer stories.  Stories can show, and showing can teach, and that just makes it all the more real, at least for me.  So, let me leap back a few years and show you what I mean.

Years ago, my children were in Early Childhood classes and the Birth to Three program (pre-school for children with special needs), because they had demonstrated developmental delays.  We didn’t know why, and nobody was very forthcoming with recommendations on where we could get additional help or *gasp* explanations.  As my husband and I saw it, our children were developmental delayed and we were working hard to address those delays; since no more help or information was forthcoming, we did the best we could with what little we had.

Then comes my sister-in-law’s wedding.  We were at a special dinner with “just the family,” which happened to include a lot of people, including people I’d met only at my own wedding and some others who I didn’t remember ever meeting at all.  The dinner was held in a long dining area at a local restaurant.  It was loud, dark, busy, chaotic, and smelly (not bad smells, just a lot of them).  I hadn’t figured out how to cope with these situations very well myself yet, so you can imagine it did not go over very well with my un-accommodated autistic toddlers.

*sigh*  I look back at times like that and I cringe.  I want to kick the self I was back then.  I want to scream at me, saying, “Can’t you see what this is doing to your kids!?!”

The truth is I saw, but I didn’t understand.  I rely very much on words to process information.  I can process ideas and feelings, but I rely on words to ground them in expressible reality.  I knew I needed to get out of there and that my kids needed to get out of there, but I couldn’t explain why we needed to get out there—not to myself and certainly not to my family.  So, I was stuck with the obligation of being there and keeping my kids there…until we were all thoroughly melted down and had an excuse—I mean, a justifiable reason—to leave.

So, I look back and I want to kick myself, but I also forgive myself for my ignorance.  I DID NOT KNOW.  I COULD NOT KNOW.  So, I rest assured I did the best I could, however poor my best happened to be at the time.

Anyway, the really momentous thing did not happen until after we left the room.  My mom, who was invited to help with the kids, and I took the boys out into the chilly, blissfully quiet outdoors, so my lovely children could scream their bloody heads off in peace.  Because, of course, they were past the point of consolation; they were thoroughly melted down. 

First, my mother in law came out, full of concern.  Then, my grandmother-in-law came out, full of concern.  After a little while with us, my grandmother-in-law took me aside, with someone else holding the fussy child, and said very softly, very gently: “Something’s wrong.  You need help.” 

Yes, I knew that on some level.  Yes, we’d tried and failed to get that help.  But this woman was the matriarch of my husband’s family, and had lived her life as a nurse to boot.  This woman had authority, and the soft, gentle way she said those words added more impact to the words than shouting could have done.

Now, I want you to think about what she said for a moment.

*….thinking…thinking…thinking…*

Okay, how ‘bout I put it this way:  She didn’t say “your kids are monsters and you need to get them fixed.”  Believe me, the way they were acting there are a lot of people who would have said something to that effect and they all seem to hang out in grocery stores.

“Something’s wrong.”  Not: “Something’s wrong with your kids” or “your kids are broken” or any of the number of insensitive, painful ways the subject is broached to many, many parents of children with autism.  “You need help.”  Not: “Take them to the doctor” or “can’t you give them a pill or something” or “you really need to teach your kids some manners” or the many other painful things parents of children with autism hear on a regular basis.

Those precious words—“Something’s wrong.  You need help.”—were the foundation for us.  We were very, very lucky to have that as our foundation.

I’m not saying all the good we’ve done for our children can be laid at my grandmother-in-law’s feet.  Mark and I certainly have done our parts, and the information we’ve gotten from many parents of autistic children and many autistics themselves has helped a great, great deal when it comes to us having done/continuing to do our part. 

But she gave us the foundation we needed to look at the situation as the problem.  Very, very lucky, for us and for our kids.

*another deep breath*

I agree with Rachel that it is intolerable that people with autism have grown up and continue to grow up believing they are some kind of tragedy.  That has to stop.  But, it’s not going to stop with us/them thinking.  It stops when we force ourselves to look at the situation as the problem, and how we—all of us who care about autistics—can address that problematic situation.

The problem is not the autistics.  The problem is not the parents of the autistics, who may or may not be neurotypical.  The problem is that we divide ourselves, because we believe we are fundamentally different.  We’re not.  We are fundamentally the same with individual differences that make each and every one of us special, worthwhile human beings.

We can stand together, as advocates and as emissaries.  But we cannot stand with you; we are you and you are us.  Some of us just haven’t figured that out yet.

Mommy Minder, Mommy Finder

  • Posted on January 3, 2011 at 8:00 AM

There are a few in the autism community that thoroughly investigate any studies they find interesting.  I’m not one of those.  But once in a while I do find a study that strikes a chord with me.  I don’t latch onto that study as gospel truth, but I do reflect on it once found.

One such study relates to visual skills.

Children with autism may lack certain visual skills needed to be independent in adulthood, new study findings suggest.

For example, they might find it harder than other adults to find shoes in the bedroom or apples in the supermarket, according to researchers at the University of Bristol in the United Kingdom.

The study authors asked 20 children with autism and 20 typical children to press buttons to find a hidden target among multiple illuminated locations in a room. One side of the room had more targets than the other side.

The children with autism took longer to recognize patterns in the test structure that would help them choose where to search for the targets. The findings suggest that the ability to search for objects in a large-scale environment is less efficient and less systematic in children with autism compared to typical children, the researchers pointed out in a university news release.

Personally, I’m a little skeptical that the findings (concerning finding hidden targets in multiple illuminated locations) can be generalized to finding shoes or apples, or that the delays in these skills identified in autistic children necessitates a similar lacking in autistic adults.  However, it does strike a chord with me.

One responsibility that seems to be primarily mine in my household of men is keeping track of things and finding them once they go missing.  To me, it’s always seemed to be a skill of thoroughness.  You put things back into their place, and when they’re not there you look everywhere until you find it.  But, perhaps, there’s more to it than that.

Perhaps I am able to identify things in a manner that my husband and children cannot.  Whether it’s a perceptual ability or a skill, I don’t know.  I mean, if you literally cannot see what you’re looking for—and by see, I mean differentiate the object you’re looking for among the clutter—, then how can you find it?  But, perhaps it is a skill.  Perhaps it is one of those skills that neurotypical individuals (and some neurodiverse individuals like myself) pick up more or less naturally to the extent that they don’t know how to teach it to those who do not acquire the skill in a similar manner.

It’s worth some thought.  Perhaps if I spent less time being annoyed that I am expected to know where everything is even after they’ve moved them and more time helping them develop this skill of minding and finding that I take somewhat for granted, then perhaps we would all be better off. 

On the other hand, from what I’ve heard from other mothers (and not just mothers of autistic kids), this seems to be a common complaint among women.  Perhaps it’s a male/female thing.  I mean, if the study didn’t account for the imbalance between boys and girls with diagnoses of autism, but had a balance between boys and girls in their typical peer group, then perhaps the difference they recorded could be less about typical/autistic development and more about male/female development.

So, what do you think?  Is it a skill or an ability?  Is it related to autism or something else?