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Summer Swim

  • Posted on June 18, 2014 at 11:10 AM

So this post is going to be a little bit late. Yesterday was a busy day and the content of this post was going to depend on what happened. I haven’t gotten a chance to write it out until now, but here’s what happened:

  • First, I had three paid assignments that were due. (I successfully completed two of them and put the third back in the public queue for somebody else to do, because I ran out of time and energy to complete it myself.)
  • Second, I had scheduled a meeting with the Sister Missionaries from our church for 4 pm. (I met with them and it was a good meeting.)
  • Third, I had to go with Alex to his first Summer Swim at 6 pm. (This is the main point of this post.)
  • Fourth, I had a sleep study scheduled for 9 pm. (This is the main point of my next post.)

So, I took Alex to his Summer Swim, which is a special program arranged by the school system. Now, it’s important to know that I wasn’t in the best frame of mind for this, because I was frazzled and stressed with too many pressing demands for a single day. Alex, on the other hand, was excited. He’d been excitable all day and telling him he was going swimming sent him through the roof. Not literally, but close enough to it.

Then, we arrived at the school. Except that it was the wrong school. By this I mean we were at the correct place to attend the Summer Swim session, but it was the wrong school in Alex’s mind. You see, Alex loves to swim. He swims two to three times a week during the school year. He swims in the pool at his school. He swims with his classmates at his school. And he loves it! He actually swims. But this wasn’t his school and it wasn’t his classmates.

This was disorienting. He didn’t want to get in this pool; he wanted to get in that pool; but, I managed to get him in the pool that was available. He didn’t want to swim with these kids; he wanted to swim with those kids; and I didn’t get him to interact with any of them. He was in the pool up to his waist, but that was it. He didn’t try to swim. He was too agitated to do much of anything. He just jumped and flapped his hands and made sounds of distress.

I thought if I could get him in deeper, he’d relax and enjoy the experience. I tried to coax him to dunk himself in the water and he jumped his way to one ladder. I blocked him and he jumped his way to the other ladder. I got there before him and he turned around and went to the other ladder. We went back and forth for ten minutes. Whenever we were face to face, Alex would pinch me. Whenever I tried to soothe him with a hug or by mushing his face (which he usually likes), he tried to bite my neck or my hands.

Then, I got the brilliant idea that if I could get him to the deeper end of the pool, where there were fewer people, he’d be able to relax and enjoy it. Remember, I was frazzled and hurried. So, I grabbed him by the belt of his little life preserver and pulled him out into the deep end. At first, he seemed like he was going to relax, but after a few moments he made a bee line for the ladder again. I tried again, pulling him out to the deep end, but he made it clear he wanted to go for the ladder again.

I blocked him and the first routine started over again, but he was even more agitated, so when we made it back to the first ladder, I told him we were done. It took some coaxing to get him up the ladder, despite all his efforts to get to the ladders before. I think he realized that I wasn’t really accommodating his needs and that it was more of a punishment for poor behavior. It made getting what he wanted (or what I’d thought he wanted) less fun for him. I dried him off, dried myself off, at least enough to get in the van, and I got him out of there. We arrived at 6:10 (which was on time) and we left at 6:35 (which was early).

Now, I readily admit that I didn’t handle this well. I wasn’t in the right frame of mind – that’s not an excuse, just an observation. Luckily, we’ll have another shot on Thursday. Maybe that one will go better.

Closer to Balance

  • Posted on June 9, 2014 at 10:07 AM

I’ve made a decision to seek balance in my life for the sake of my health, and for the sake of my family, and for the sake of our financial well-being.

As the breadwinner of the family, I need to work to win our bread. As a freelancer, I don’t get paid if I don’t actually work for my clients. There’s no paid sick leave, no vacation pay, no paid medical leave of absence for me. If I don’t work, we don’t have enough money to pay our bills and buy our groceries. We do get assistance, but it’s not meant to be enough to live on.

As the mother of three children with disabilities, there are a lot of external expectations (from outside our family) and there are even more internal expectations (from inside our family). There are wants, needs, and urgent matters. All these things demand my attention. Then, of course, there are the normal household tasks, like shopping, dishes, and laundry. There’s also the morning routine and the nighttime routine, both of which are about to change since this is the last day of school. When I can’t take care of my family, there is only so much slack my husband and our support team can pick up. I’m essential to my family’s well-being, not just our financial well-being.

As a person who is experiencing a disability, there are doctor’s appointments to attend, medications to take, and forms to fill out in preparation for appointments. There’s also sleep to get and food to eat and muscles to stretch. These are all necessary parts of trying to get my sleep, concentration, and pain levels under control. The better I manage my health, the more capacity I have, and the more I have to give to my family and my work.

All these things demand my time, my attention, and my commitment. And that doesn’t even include things like personal relationships, exercising my creativity, and watching some stress-reducing, pure-pleasure television shows (I’m currently watching Charmed for the first time).

I need to find balance. Admitting this is helping me to move closer to attaining it. I find that I stop more to question my own compulsiveness and reflect more on what is important, instead of simply responding to what is urgent. I’m a work in progress, but I’m getting closer.

Learning to Lie

  • Posted on March 28, 2014 at 10:00 AM

Lying is a learned behavior. Unfortunately, kids learn this pretty young. They learn it from their parents, from other kids, and from the entertainment industry. Even lessons about not lying can, in fact, teach people to lie.

For many years, Willy would tell us the truth, whatever it was, and we would reward this behavior. Brandon learned to lie much earlier, but he also learned that telling a lie and getting caught was cause for added punishment. Telling the truth, even if it was a “bad” truth, meant leniency; sometimes his punishment was limited to a lecture. Still, Brandon would try to lie when he thought he could get away with it. I’m sure some of the time it worked, but not always.

Now, Willy’s learned to lie. He has not, however, learned to discern when he can and cannot “get away with it” very well. He threw up on Sunday, but told Mark that he hadn’t. He got caught because he didn’t clean the vomit from the toilet seat.

First, we talked about why he lied. Willy is disappointed because the school year has been extended due to too many snow days this winter. He didn’t want to get another day added on to the end of his school year, so he wasn’t willing to miss a day of class because he was sick. So, he lied.

We explained the faultiness of his logic—missing a day due to illness does not add another day of school on at the end of the school year; only snow days can do that—and then we talked about lying. Willy still isn’t comfortable lying, so it was an easy lecture.

But it just goes to show that learning to lie is part of our culture. Even when the internal inclination is to tell the truth, we try to protect our interests by lying. We spend our childhood learning this skill. If we’re lucky, we will spend our adulthood learning to unlearn it.

Smelling Sick

  • Posted on March 26, 2014 at 10:00 AM

Parenting brings about some pretty strange super powers. One of mine is the ability to smell when my children are getting sick. I don’t know what it is, maybe a pheromone or something, but when the boys are coming down with something they start producing this faint odor. It’s not unpleasant and it’s not strong, but it certainly catches my attention.

I don’t make my decisions about keeping the boys home from school due to illness based on this smell alone, but the smell does give me a warning to pay closer attention to the signs that the boys might be getting sick. Since the boys don’t necessarily tell us when they’re sick, this can make the difference between keeping the boys home in comfort and getting a call to come pick them up from school.

Alex was grumpy this weekend. Several times I saw him get up, start to do something, and then seem to give up or forget and go back to what he was doing before, which required less energy. I do that all the time, usually because I have too much on a mind disengaged by too little sleep. Alex sleeps pretty well and usually is more focused, in his own way, than that. It was a sign that he was extra tired. He also lashed out more readily at others, especially Ben. He cuddled more and I found him laying down several times. I thought it was odd, but I wasn’t too worried.

Sunday evening, after Mark told me that Willy had thrown up (and then lied about it); then, I smelled the smell on Alex. Together with the smell, I had enough information from the behavioral change to consider him sick despite the lack of fever or vomiting. They both stayed home Monday. Alex got some extra rest and an extra quiet (Ben-free) day and seemed to recuperate by the end of the day. Willy recuperated a bit faster, but still needed the extra rest.

Now, they’re both back at school. I just hope Ben doesn’t get it, too!

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.

Worth

  • Posted on November 22, 2013 at 10:00 AM

What do you do to reinforce the worth of a child in a world that’s better at tearing people down than building them up? The schools have their own strategies, though those seem to be better at making people feel good than enabling abilities. What do you, as a parent, do to build up your child’s worth?

Do you tell them you’re proud of them? Do you tell them why? Do you encourage them in their interests? Do you continue to support them when their interests change? Do you recognize both the good and the bad, and encourage them to be all of who they are? Do you tell them you love them? Do you show them you love them unconditionally?

Worth is something that must be instilled. A lot of people erode others’ worth for their own sense of self importance. You need to instill more than others erode. It’s just part of a parent’s job.

The Full-Time Conundrum

  • Posted on August 14, 2013 at 10:00 AM

In the world of employment, an increase in full-time employment opportunities is a very good thing. After all, full-time employment means that people can actually support a family by working for their keep, assuming their hourly wage is livable. It’s a sign of an improving economy.

When you are the mother of three children with special needs and a freelancer who is also looking to start a graduate degree program, full-time employment can be rather intimidating. I’ve mostly been looking for part-time work, in order to better balance the needs of my family with the needs of my bank account. Yet it seems that most of the opportunities available in my area for someone with my skill set, especially those willing to pay anything close to what I’m worth, are full-time positions.

I want the work and I want the security of an employed position. I’d dearly enjoy the full-time paycheck.

The question is this: Will I be able to enjoy the flexibility I need if I work full-time? If not, will I be able to provide my husband with the support and assistance he needs to step into some of the roles I’ve assumed for so many years?

The complication, of course, is that my husband doesn’t drive. A further complication is that school is starting in the coming weeks and our schools aren’t exactly accommodating in their scheduling, at least not so that it’s feasible for a working parent to register and ready-set-go three children at three different schools after commuting from a job that’s roughly 45 minutes away.

Perhaps all this worrying is premature. My first interview was on Tuesday. This position is through a staffing agency, so my next interview will be with the actual employer. School may be started before I’m even offered the position, if I’m offered the position, and then there would only be the occasional doctor’s appointment or IEP meeting to contend with—for three boys.

The best thing I can do is be honest and upfront and let them decide for themselves whether they can be accommodating. I know I can do the work and I know, if given the opportunity, I can make up for any downtime I may need. The question, as always, is will they let me?

Parent Tip: Immerse Yourself in Autism

  • Posted on July 26, 2013 at 10:00 AM

Cultural immersion is the idea that idea that you learn about another culture more quickly and more thoroughly if you immerse yourself in that culture. Student who study abroad through an immersion program will travel to another country and live in that country—speaking the language, learning the culture, adapting to the country’s way of life—to improve their understanding of that country and that language, but also to broaden their understanding of global affairs. Cultural immersion programs are touted as a great source of learning.

Compare that to typical American tourism. As Americans, we go into another country, expecting them to speak English we can understand. We visit the sights, but see them only from our own perspectives. We wear our American clothes, carrying around our American baggage, and cop our American attitudes. We often come off as rude, insensitive, and ignorant.

An orientation meeting happens when you start a new job with a new company. If you are one of many new hires, there’s an actual orientation meeting. If you are a single hire, this often comes in the form of a personal tour and a stop at human resources. Either way, your new employer orients you to the culture of the organization you’ve just joined. Some of that orientation will be more about what the organization intends to be, rather than what it is, but even there you’re learning about the organization’s culture.

Compare this to times where you may have started a new job and been plopped down to work without much of an introduction. Disorienting, wasn’t it?

On the surface of things, parenting a child with autism is like being forced into an immersion program. For most people, this may be their first introduction to the disability community. They have to navigate the worlds of special education and special needs medical care with no training and no orientation. They have to figure it out for themselves or find people who can help. All the while, you also have to learn about your child’s disability and ways to help your child.

That sounds a lot like immersion, and I suspect we’ve all been there to one degree or another. After all, we’re being forced—against our will—into the world of disabilities, with all the systems and trappings that go with that.

A lot of parents seem to stop with that level of immersion. They stay in the adult world where all their energies and resources revolve around dealing with their child’s autism—dealing with their child.

It’s like American tourism or the disorienting non-orientation. It’s overwhelming, it’s intense, but it doesn’t help you to understand your child.

In order to immerse yourself in autism, you have to make a shift in your mind. Do you really want to deal with your child? Or do you want to understand your child? If you really want to understand your child, you have to immerse yourself in your child’s world—not the world of disabilities—and connect with your child as a fellow human being. The problem, of course, is that people with autism seem—and truly can be—disconnected from their fellow human beings.

It’s more than just a different culture; it’s a different way of experiencing the world and the people within the world.

It’s true that you still have to immerse yourself in the world of disabilities, because those are the systems our society creates to deal with people with disabilities. But your child is more than just a problem to be dealt with. He or she is a human being you love and care about and want to have a relationship with. In order to do that, you need to connect with him or her. Don’t be an American tourist, expecting your child to bridge the neurological gap. After all, if your child could do that, then he or she wouldn’t be diagnosed with a neurological disability. Immerse yourself in your child’s world. Speak your child’s language, experience your child’s world, experience your child’s way of being. Let that experience broaden your understanding and bridge the gap between yourself and your child.

Autism doesn’t have to be your enemy. Your child certainly should not be your enemy. It’s within your power to attain understanding. Take a step into your child’s world and experience it for yourself.

The Story I Am Telling

  • Posted on July 8, 2013 at 8:00 PM

My new office is in my mother’s house, so she’s often there when I release a progress report on my recent work session, which I’ve been doing on my social media sites. A few days ago, after releasing a report, I came upstairs and my mother greeted me with, “You’ve finished another chapter! Great! Congratulations!”

That started a conversation about the book I am writing and I decided to share a chapter with her. She was effusive with her praise, as mothers are prone to be, and then said something that caught my attention.

“Well, you need to tell where Willy was in order to show how far he’s come.”

I processed this for a moment. No doubt I was shaking my head from the start. Still, it took me a while to come up with the words that went with the denial.

“I’m not writing Willy’s story. It’s my story. It’s not about the boys. It’s about me. It’s about what I did with it.”

This is an important distinction.

I write about my children. I write about them a lot. But I’m never telling their story, because their story must be told through the way they process the experiences they have. I don’t presume to get inside their head and voice what’s in there. I tell my story. I tell my story as a parent. I tell my story as someone who is neurologically different, but not diagnosably autistic. I tell my story as someone who had to learn to advocate for my children.

And that is the crux of this book. Going into this whole autism thing, I had no idea what I was doing or what I was dealing with. I’ve read a lot of stories from parents who took charge from the get-go, but I wasn’t one of them. Based on the people I’ve talked to, most of us weren’t one of them. So, on the one hand, I’m telling my story for those parents who don’t know what to do when they start out.

More than that, the place that I went is also different than the norm, because I am different from the norm. So, I’m telling my story for all those parents who don’t jump on the I’ll-do-anything-to-cure-my-child’s-autism bandwagon.

My children are central characters in my story, but this is my story. It’s not because I’m arrogant. I certainly don’t think I’m more important than my children. But I can’t tell their story. I can only tell my story, because I am only in my head, processing my experiences. If I were telling “their” story, it would be fiction, not memoir, because I’d be making unknowable assumptions on what they were experiencing. Furthermore, I am telling my story because I believe (and I’m not alone in this) that telling my story will be a service to others, particularly a service to parents who want to serve their children.

Someday maybe my children will tell their own story. It may not be in words, though, but that’s part of the point. Me, I will tell my story, and I’ll tell it in words, because that’s the story I have the authority to tell.

Identifying with Difference

  • Posted on June 17, 2013 at 10:00 AM

Will is at the stage of his development where he’s forming his own sense of values and his own identity. In short, he’s a teenager. This process starts much earlier, of course. And Will, being both my husband’s and mine, has strong opinions and a will to argue the point. Even when he’s wrong. Even when we can prove, unequivocally, that he’s wrong. Facts are facts. He resents that when he’s on the wrong side of them.

I remember, as a child, being very similar in that respect. Don’t worry. It is possible to grow out of that sort of thing. Unfortunately, far too many people don’t.

Anyway, despite his will to form his own values and identity, Mark and I take our responsibility seriously when it comes to helping him shape those values and his identity. We look for opportunities and we snatch at them.

Will and I still read together. We’ve recently read Ender’s Game and Speaker for the Dead and have moved on to Xenocide. For those who aren’t familiar with these books, they are part of a series written by Orson Scott Card.

In Ender’s Game Ender/Andrew Wiggin is taken from his home at the tender age of six to join a military training facility where they train children to fight aliens. Ender exists specifically for this purpose: his brother was too cruel, his sister was too kind, so despite strictly enforced population controls, Ender was born with the hope that he’d be “just right.” And he was, especially after what they put him through. He was empathetic enough to understand his alien opponents, but ruthless enough to blow their digitized home world to atomic dust. After all, it’s just a video game, right?

In Speaker for the Dead, Ender is a grown man who has survived three thousands year, but is only 35-ish. Ain’t space travel a grand thing? He meets some new young people who have direct contact with a new alien race, but these people are still in the pre-agricultural stage and they’re different in a way nobody quite understands. He’s brought there to solve some serious dilemmas and to unravel some serious puzzles—at least, that’s why he comes. In the process, he starts a war to save the life of a young man who ends up on the wrong side of a fence.

Now, in Xenocide, they have to fight this war. The young man who ended up on the wrong side of the fence is suffering. The fence was electric, except more so. It was designed to create pain too intense for a human to climb the fence, but the young man tricked himself into climbing it and the experience left him with brain damage. So, now every time that character appears as the point of view character, his disability is a central part of the discussion.

All three books have stimulated important discussions. That’s why we read books like this together. But the disability factor is special for obvious reasons. It’s important to me that Will be able to see a similitude between not only himself and his less-functioning brothers, but also between himself, his brothers, and people with other disabilities (and other differences). For example, acknowledging Will’s initial reaction, “I’m glad I don’t have brain damage,” is important. Nobody asks for that, after all. It’s not what any of us want for ourselves.

But so is turning that statement around in two necessary ways:

  1. You have autism and that is not brain damage.
  2. People like Miro, who do have brain damage, are still people and still deserve to be heard, because they still have something to say, and you’re good at listening.

Do you try to help your children identify with those with differences that are different from their own? How do you do it?