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  • Posted on December 5, 2012 at 5:23 PM

Life as a family coping with multiple disabilities and multiple people with disabilities often seems to revolve around the issue of cumulative effects. At least, that’s our experience.

This is true of the big issues, of course. For example, the longer Mark is depressed the harder it seems to be for him to recover from that depression and the harder it becomes for him to imagine a future point in his life when he’s not depressed. The longer Alex goes without an effective means of complex communication, the further behind his peers he gets, and the less likely he is to have anything resembling a “normal” future, which means his projected outcome is “worse than” his brothers’.

But it is also true of the small issues. For example, Ben is still having a rough time at school and we’re still at the “figuring things out” stage, so he’s accumulating stress all week long. So, the at-home strategies that have been in place and have been working are no longer enough to help him cope with the additional stress. In turn, Ben’s lack of coping results in more outbursts, particularly more outbursts targeting Alex. Alex, then, has a rougher time, more stress, and more outbursts of his own. So, Alex takes out his frustrations on others, particularly but not exclusively me. This involves pinching and poking the “trigger points” that are especially painful, which “gets a rise” out of me and makes me hurt and be grumpy. This reduces my self-control, meaning I become more snappish, and this impacts Willy, because he’s especially sensitive to snapping. Meanwhile Mark, who is the steadfast star we all orbit around, seems to get more depressed, because there’s very little he can do about all of it.

Recently, when explaining the spoons/marbles theory to a certain co-author of mine, he added a new dimension by describing it “more like spinning plates.” This shows the cumulative effect, because—after being overextended—you start each day walking on a bunch of broken plates. And I’m definitely (though only figuratively) wading through shards.

The Stressors of Special Needs Parenting

  • Posted on July 11, 2012 at 8:32 AM

There’s no use denying that parenting a child is stressful.  Nor is there any use in denying that parenting a child with special needs is exceptionally stressful.  Of course, some of that stress could be avoided by living in a more understanding society—at least, in theory it could be.  But some of that stress is unavoidable.

First, there is stress in meeting an immediate special need.  For example, helping Willy cope with the immediate needs brought on by his having seizures has been enormously stressful.  Of course, all parents experience the stress of meeting their children’s immediate needs.  Parents of children with special needs experience more stress, because there are more needs, and often the needs are exceptional—meaning we usually don’t have readily available access to the experiences that would train us to deal with those needs.

Here I must point out that I am using “special needs” more loosely than the term is traditionally used.  Traditionally, “special needs” is synonymous with disability, but if you think about it there are many “special needs” that have nothing to do with disability.  For example, a child who has been abused or physically traumatized in an accident has special needs.  A child who has experienced an emotional trauma, like the loss of a parent, has special needs, too.  These kinds of special needs can, of course, overlap with the special needs of those who have disabilities.  The point is, as we acknowledge our own stress, it is also important to acknowledge that other parents can have very similar (in quantity and severity) demands placed on them due to very different circumstances.

Second, there is stress in advocating for your child.  While, in theory, the need to advocate could be avoided by living in a more understanding society, the only way we’re going to get a more understanding society is by advocating for our children (and later with them).  So, considering the times in which we live, advocacy is unavoidable.  We advocate for appropriate medical care.  We advocate for appropriate education services.  We advocate for appropriate supports.  We advocate for appropriate opportunities.  We even, upon occasion, have to advocate for appropriate recreation.  Advocating is stressful whether our advocacy work is on a small scale, concerning our own child and our own situation, or on a larger scale, concerning many children in our local, regional, national, or international community.

Third, there is stress in meeting auxiliary and fall-out needs.  Having a special need creates an immediate need.  Again, I will use the example of Willy’s seizures.  He has a need for medical or neurological stability.  We have a need for answers as to how to attain this medical or neurological stability.  But there are also auxiliary needs.  For example, we have to answer the question: “How do we support Willy’s medical needs at home?”  And, by the end of the summer, we’ll also have to answer the question: “How do we support Willy’s medical needs at school?”  There are also fall-out needs.  For example, “How do we cope with Willy’s increased anxiety?”  “How do we provide Willy with emotional support?”  All these needs add to the stress.

Fourth, there is stress to meet on-going needs.  In my case, I have a household of six (including myself) to manage.  Luckily, I don’t do that alone.  But the point is that Willy and all his brothers, along with my husband and myself, all have on-going needs that don’t cease to exist because a new special need has arisen.  Meeting these needs was stressful before, and it continues to be stressful now.  In fact, with each new demand, the stress of meeting previous demands increases, because there are fewer resources to devote to those demands.

Fifth, there is stress to “catch-up” at home.  This may seem minor in comparison, but when you’re so busy meeting new needs and ongoing needs and advocacy needs and auxiliary needs and fall-out needs, only to find that when you want something to eat your fridge looks rather bare and your cupboards aren’t much better, then the weight of household needs can seem pretty heavy.  In any American household, there is a need to restock or shop, to clean, to pay bills, and the like.  These needs don’t go away just because you have too much on your plate.  The more you put them off, the more pressing they become, and the need to satisfy these needs can be its own stressor.  (Of course, I can’t imagine this stress fairly compares with the stress of having to grow one’s own food, make one’s own soap, and perform all the household tasks with fewer tools and less resources, as many people still have to do, so it’s all relative.)

Sixth, there is stress to “catch-up” at work.  Whether you make it to work or not, you’re not going to be at your best when a new need arises.  In my case, I have some choices, but I also have contracts.  Besides, any job that requires a high degree of concentration is going to be negatively impacted by a new special need, because it is more difficult to concentrate on work when you’re facing a new, unknown special need at home.  It is also stressful to try to catch-up with all the tasks that you’ve neglected.

Seventh, there is stress to maintain relationships.  People aren’t just a parcel of needs that need to be met, though sometimes it can seem like it.  At the core, we are a series of interconnected relationships, and those relationships need to be nurtured and maintained.  Performing these tasks well can help alleviate stress, but the need to perform them when under extreme pressure is another stressor—one that, unfortunately, tends to be neglected, which risks pushing those relationships to their breaking points.

Eighth, there is stress to help others with their own stress.  As the parent, you have the responsibility (which you may share with a spouse or a significant other) to help others in your household and extended network of family and friends deal with their own stress.  Ideally, this goes both ways, but it doesn’t always seem like it.

This obviously isn’t an exhaustive list, but I think I’ve covered all the major general categories.  (Feel free to add to the list in the comments.)  There’s a lot of stress.  Somehow we need to learn how to deal with it.  I’m still trying.

Interruptions and Unexpected Changes

  • Posted on May 14, 2012 at 8:00 AM

I’m not very good at developing predictable, reliable schedules for myself.  Too much of my life (and my sleep) is influx to make that a practical solution for me.  That, in itself, isn’t the problem.  I mean, it causes some problems, but not the problems I want to talk about.

Because, you see, I do make schedules for myself.  They vary from day to day and are often less dependent on time and more dependent on accomplishment.  I like to break down whole tasks into parts.  For example, a post is three steps: 1) write the post, 2) polish the post, and 3) post the post online.  I schedule each step separately, but in order, with the others.  I like to finish one step before I’m interrupted by something else, unless I have a need to multitask, in which case I still complete one task before I move on to another task in the same set, which may occur at a different point than when I complete one task in a different set.

Of course, if I have something scheduled for a specific time (or even a general time) I work on my lists of accomplishment-based tasks until they push up against the time constraint, and then I switch gears.  Ideally, I will complete any accomplishment-based tasks I’ve started before switching gears, and I’ll avoid starting new tasks if I don’t think I have time to complete them.

Most of my days are broken down in a series of tasks, separated into sets, completed as I am able, but in order.  What doesn’t get done today is moved to tomorrow or one of the upcoming days.  When the workload gets to be too much, I take time off to play—or to decompress, as the case may be, since sometimes playing is more work than I can handle.  And, lately, I’ve been scheduling in more decompression time into each day.

But, all of this is just the setup.  The point is I am busy.  There are few times in any given day when I’m not doing something.  This is a problem, because there are inevitable demands on my time that are not scheduled.  These demands are often perceived (by me) as interruptions and I don’t like interruptions.

For example, I’m in the middle of a set of business tasks and I take a bathroom break.  If the boys are home, then I am almost always accosted by one or more of the children as soon as I come upstairs.  Not only does this interfere with my ability to get to the bathroom, I perceive this as an interruption.  Interruptions make me surly and of a sour temper.  Yet, at least in theory, spending time with my kids and being available for my kids is a high priority in my life.

Dissonance ensues.

Again, my days are full of tasks.  There is little time set aside for not doing, because there are few days when I get through all of my tasks and have time left over.  It has been weeks (maybe months) since I’ve had time left over.  This is because, in part, my business is doing better, so that’s a good thing.  As our country slowly recovers (sort of) my family’s economic situation slowly improves.  All to the good.

Yet, this has also been a time of many demands on my time, some of which are unexpected and unplanned.  My mom is in the process of buying a house, so instead of coming over and doing respite as per usual, she stays home to clean and pack.  That’s fine, at least in theory, but when this happens without forewarning, when I arrive home at 8pm from a much needed shopping trip (groceries and the like, not “therapy”) to discover that the rest of my night is going to be spent performing unexpected tasks in a rush to get the boys ready for bed, that’s kind of a problem.  Not only do I have new things to add to my lists of tasks, not only do I have more incomplete tasks that were already on my lists, but I’m out of sorts with myself.  The resulting stress means I am able to do even less of my original set of tasks than I would have been able to do with only the energy spent on the new tasks.  Plus, the boys get to bed late, because I started the new series of tasks later than I should have and would have done, had I but known that I would have been doing them.

Now, it’s not that my mom’s decision to stay home and work on her own things was at all unreasonable.  It’s not even unreasonable that she, thinking that she’d be able to do both, postponed her decision until after I had gone to the store.  After all, there was no way for her to know I would be going to the store, because I didn’t even know when I was going to the store.  Again, those decisions are often based more on my rate of task-completion, not a specific time.  So, the point isn’t that my mom did this thing that set my evening off in the wrong direction, the point is that such a change sends my evening off in the wrong direction.  And the busier I get, the worse the stress effects me.

Another example is when Brandon, who is more active outside the house than his brothers, interrupts my work to ask for a ride.  Suddenly, I’m on the spot to do something that I wasn’t expecting.  Now, again, it’s not that I don’t want to give Brandon a ride.  It’s that 1) I didn’t know I was going to be called upon to give him a ride and 2) I had no warning of when I was supposed to fit this into my schedule.  Brandon is getting better at this, and he’s now letting me know at least a few hours in advance that a ride will be requested and providing me with an estimated time.  When he knows in advance, he’ll even inform me in the morning or the day before, which is very much appreciated.

But, again, the point isn’t that these interruptions and unexpected changes happen—they’re going to happen, as last week with Ben proved, even if everyone in my daily life does everything possible to prevent it from happening.  Things change.  The unexpected arises.  I will be interrupted.  And, in theory, I’m okay with that.  The point is that it has an unfortunate effect on me and that effect is getting worse and I don’t like it.  The effect, my reaction, causes dissonance (which also makes it worse), because the reaction is inconsistent with my values.

Any ideas on how to solve this that doesn’t involve getting less busy (because that’s not likely any time soon)?

A De-Stressing Surprise

  • Posted on September 3, 2011 at 9:51 PM

So, while I was taking a short break from blogging in order to make more time to help my boys transition back to school I was also researching an article idea I had about stress and parenting children with special needs. I wanted to provide my potential readers with a greater understanding of what stress is and how to cope with in relation to the challenges of special needs parenting. As a reasonably well-educated and well-adjusted mother of three children with autism, I thought I could write from a position of authority on this topic.

I wasn’t wrong, but I wasn’t right either.

You see, for some silly reason I thought I had a pretty good handle on my stress. Maybe, relative to some, I do. But, as I started researching the signs of excessive stress (or, to be particular, excessive unmanaged stress), I realized that I wasn’t managing my own stress as we as I should.

The following list describes some symptoms of unmanaged stress and my reactions. You might want to check your own reactions, because the consequences of unmanaged stress are bad for your health (not to mention your ability to parent your children effectively).

Symptoms (my responses):

  • Memory difficulties. (Um, what was the question again? Um, yes, I got that.)
  • Difficulty concentrating. (While I’m sure my children being out of school—and the subsequent increase in volume—is part of it, concentration has been an issue.)
  • Poor judgment. (Not so much…unless I’m judging that poorly.)
  • Seeing only the negative. (Not only the negative.)
  • Anxious or racing thoughts. (Um, yeah, but that’s kind of normal for me.)
  • Constant worrying. (Again, normal—for me.)
  • Aches and pains. (Not really.)
  • Nausea, dizziness. (Thank goodness, no.)
  • Chest pain, rapid heartbeat. (Definitely not that.)
  • Frequent colds. (I work in a wet basement, so I’m not sure my perpetual sinus condition counts.)
  • Moodiness. (Unfortunately, yes.)
  • Irritability or short temper. (Yeah, I got that.)
  • Agitation, inability to relax. (I’m getting better, really I am!)
  • Feeling overwhelmed. (Does it count if you are actually overwhelmed?)
  • Sense of loneliness and isolation. (Nope. The boys are way too loud and active for me to feel lonely or isolated.)
  • Depression or general unhappiness. (Yes, but I’m clinical, so that doesn’t really count.)
  • Eating more or less. (I’ve eaten today, so I’ll count that as a ‘no.’)
  • Sleeping too much or too little. (Too little time=too little sleep. Duh!)
  • Isolating yourself from others. (Did I mention I work in a wet basement?)
  • Procrastinating or neglecting responsibilities. (Um, well, yeah, there’s that…but only a little.)
  • Using alcohol, cigarettes, or drugs to relax. (I’m addicted to cigarettes, but that’s not new. Though, stress is the reason I started to smoke and the reason quitting doesn’t go well. So, that’s a ‘yes.’)
  • Nervous habits. (Yeah, again, that’s kind of normal for me.)

The symptoms of unmanaged stress correlate rather closely with the symptoms of certain anxiety-related disorders. Go figure! I have been diagnosed with both depression and OCD, so it’s hard to separate out what’s going to be normal for me and what’s actually manageable stress, but it looks like I need to work on this some more.

False Blame

  • Posted on July 31, 2011 at 5:16 AM

This post is in response to Rachel’s recent post at Journeys With Autism about taking care when expressing our experiences of disability. Her post was, in turn, a response to another blogger.

While I’m not going to try to touch on everything Rachel covered (It’s a good post, and I highly recommend you check it out.) there’s a particular passage that got me thinking about an issue that’s been a concern of mine for a long time.

It all started with this:

My concerns on this score only increase when Ms. Baird launches into some of the most fear-inducing words about autism that I have ever read:

Autism is where marriages and parenting partnerships come to die on the rocks of exhaustion, despair and blind self-interest. Autism wears down families, severs familial bonds with sharp and bitter recriminations, blame and guilt.

I absolutely cannot tolerate it when people indulge in these kinds of generalizations about a condition that exists on a very, very wide spectrum. I understand and have compassion for Ms. Baird’s experience, but it is her experience. Yes, it is an experience shared by other families, but it is by no means the universal experience of autism.

I highly recommend reading Rachel’s post, because she makes some very important points that are specific to autism, and apply more generally to discourse on disabilities. However, in this post, I would like to address this from a perspective beyond autism and beyond disability. Simply put, what Ms. Baird is experiencing within the context of the quoted passage has nothing to do, specifically, with autism.

For those immersed in the world of parenting an autistic child, this may seem counterintuitive. After all, those of us with autistic children, especially children with “severe” autism, know it’s almost always challenging, often exhausting, and very, very stressful. But that’s just it. It’s not autism that wears down families, severs familial bonds, or creates blame and guilt. It’s stress. More specifically, it’s our poor or inadequate reactions to stress that have these consequences.

Stop and think about it for a moment. If autism were the cause, then we’d only be seeing these effects in families with autism. But that’s not the case. Nor is it the case that we only see these effects in families with disabled children. No. We see these effects in families that are impacted by a wide variety of stressors, and currently one of the most notable stressors is finances. How many parents have killed their children or their whole families in reaction to financial crises? I don’t know about you, but I’ve lost count. How many more succumb to abusive behaviors? How many people have walked away from their marriages and their children because they lost their jobs, because they couldn’t pay their bills, because they were going to lose their home? Is anyone even counting?

Sure, some families with autistic children experience exactly what Ms. Baird described. But so do families with no autistic children. Autism is not the cause. We have a tendency, as parents of children with autism, to falsely blame autism for our struggles and our challenges. We blame autism for experiences that we think are, at least to some degree, exclusive to ourselves and our “kind,” because we get so caught up in autism that we fail to see our similarities to others outside of ourselves.

People can, and frequently do, react badly to stress. These reactions are to stress, or the experience of being stressed. The cause of that stress is, for the most part, irrelevant when the issue is our reactions to that stress. There are many causes, and there are many reactions; but the causes do NOT dictate the reactions.

What is the difference between the mother who kills her child because her child is autistic and the father who kills his child because he’s broke? Certainly the first evokes great concerns about the perception of autism and disability in this country; certainly the later evokes great concerns about the psychological effects of our economic downturn. But, despite these differences, both are tragedies; both involve the deaths of innocent children at the hands of their stressed-out parents; both are bad reactions to stress.

I’m not a psychologist, a sociologist or an anthropologist. I cannot tell you how different or unusual this reaction is from reactions to stress over hundreds or thousands of years of human society. I’m just a mom. I’m a mom who looks at my kids and is horrified at the thought of a parent willfully killing their own children. It’s outrageous. It’s horrifying. And it’s happening. It’s not just happening to autistic kids. It’s not just happening to kids that are disabled or sick. The phenomenon is bigger than a single stressor. It’s bigger than autism. It’s bigger than disability. I see this and I can’t help but think that something has gone very, very wrong. For all I know this has always happened. I don’t know. But, even if this is some sort of incomprehensible “normal,” it’s wrong. It’s just wrong.

When I brought this up in a briefer form on Rachel’s post, she evoked the word “support.” For those of us within the autism community, support is a major buzzword. It’s a major buzzword in the greater disability community as well. My question is this: why isn’t support a major buzzword in the community at large? The concept of support is not exclusive to disability. We all need support. We all need community support; in fact, that’s the reason why communities exist.

Families disintegrate due to stress, or rather due to poor reactions to stress. The nature of the stress is not what needs to be fixed. There are too many stressors in the world to fix them all. If it wasn’t autism, it could be poor finances; if it wasn’t finances, it could be something else. The cause of the stressor isn’t the problem. The problem is how we respond to the stress. If people get the support they need, I believe responses would improve—again, I’m neither a sociologist nor a psychologist, so my statement is intuitive not factual. My point is that blaming the stressor does not get you the support you need. You cannot choose whether or not your child has autism. You cannot choose whether or not you’re laid off. You can choose how you respond. You can choose to let your family disintegrate. You can choose to take them out with a shotgun. You can also choose to cope, to get support, to reach out, to build community, to help and be helped.

That choice has nothing to do with autism. You can lay the blame for all your woes at autism’s anthropomorphized feet if you’d like, but it won’t do you or anyone else any good. How you deal with the stressors in your life is your choice and your responsibility. Choose wisely.

Maternal Stress

  • Posted on November 13, 2009 at 11:53 AM

According to a news brief: “the daily physiological and psychological toll on mothers of adolescents and adults with autism is documented, revealing patterns of chronic stress, fatigue, work interruptions and a significantly greater investment of time in caregiving than mothers of children without disabilities.”  The study cited revealed “physiological residue of daily stress” in the form of significantly lower cortisol levels.  According to this brief of the study results, the primary distinction they looked for within the population of mothers with autistic children was “a history of elevated behavior problems.”

While I certainly recognize why this distinction would be appropriate from a research stand-point, I propose an equally important distinction would be to consider parental response.  After all, behavioral patterns of the children are not within the parent’s control, but the behavioral response of the mother is within her own control.  The news brief concluded with this statement from researcher, Leann Smith: “We need to find more ways to be supportive of these families.”  I do not disagree, but perhaps there is something more immediate that parents themselves can do for their own health and well-being.

See I have a hypothesis: mothers who accept autism will have more healthy stress levels and less stress-related health risks than mothers who are constantly fighting against autism.

The key thing for me is this:  “Cortisol levels were found to be significantly lower than normal, a condition that occurs under chronic stress, yielding profiles similar to those of combat soldiers and others who experience constant psychological stress,” (emphasis added).  Considering that many mothers who are traumatized by their child’s autism use language similar to that used in warfare – like “fighting” and “battle” – is it really surprising that they would have profiles similar to combat soldiers?  They are combat soldiers—they are waging a war against autism.  Think of the “I Am Autism” video.  That video used the language of war, not unlike the language used when describing terrorism that happens in one’s home country.

As parents, we can choose to bring stress upon ourselves by waging a war against autism, embracing the psychological risk-factors of a soldier’s lifestyle in the process.  Or, we can choose to be parents, not soldiers, and simply raise our children.  Personally, I believe the latter is the better choice, for our own sake and for the sake of our children.  I hope they continue this line of research and add other factors to see how parental responses to autism affect the outcomes for those parents.