You are currently browsing all posts tagged with 'stressors'.
Displaying 1 - 2 of 2 entries.

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.

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.