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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.

Independence: Part 1

  • Posted on July 9, 2011 at 6:21 PM

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

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

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

Unmet Needs

  • Posted on September 10, 2010 at 4:57 PM

If I have a problem—an unmet need—surrounding the act of parenting my children with autism, there are many sources I can go to resolve my problem.  Because of tight budgets and inadequate levels of service, there is no guarantee that my problem will be solved—even if the problem is a major need that has a significant impact on my family’s quality of life.  However, there are many people and organizations that will try to assist me.

I have a voice.  And I’ve found those willing to listen.  This is a good thing.  But, it is also a problem in and of itself.

I have a voice.  People listen to me

My children are not so enabled.

The purpose of this post is not to say that society has no obligation to provide for the needs of parents of children with special needs.  Nor is it to say that those needs are not important.  Children need their parents, and their parents’ needs must be met in order to care for their children.  For many families, respite is, quite literally, a life saver.  And that’s just one example.

However, I believe our society needs, above all, a shift in focus.  This is big statement that includes parents in general, not just parents of children with special needs or parents of children with autism.  I have grown up in a very selfish age.  Some books I’ve read as a business student cited the 1980’s as a significant shift in focus.  Parents who grew up with relatively little found they had an abundance, and they did not want their children to go without anything they desired.  Marketers and businesses encouraged this, and the resulting sales fed some of the economic booms over the last few decades.  When the abundance was not available, people assumed debts to feed their unquenchable desires—and that led, at least in part, to the recent economic crash.  It also created spoiled children that grew into spoiled adults.  Those adults are now parenting today’s children—and they (the adults) are still spoiled, selfish, self-absorbed people.

This is not an accusation against individuals.  It’s a societal trend—specific to, but probably not exclusive to, the United States.

This trend is in-grained into our society—fed by marketers, service providers, businesses, and non-profit organizations—that it pervades just about every facet of our lives.  Sure, there are individuals who have not succumbed to this culture.  But the cultural shift is so huge it’s hardly recognizable—like trying to identify an elephant under a microscope.

Our children are those who, above all, must pay the cost of this culture.  From liberated women to liberated men, we have families pulled apart by selfishness and self-absorption.  And society as a whole caters to this self-involvement—supplies must match demands or the supplies sit unused.  It’s an economic law.  The demand created by those with the power—that’s us, the adults—is based on this self-indulgent culture.

I remember (when I was still in junior high) reading about some of the social justice movements of the times.  An oft-repeated slogan was:  “What about the children?”  This slogan was used for all sorts of things when I was growing up.  From environmental issues to the idea of nuclear war, from organizations determined to equalize the racial divides to charities designed to raise funds for the impoverished countries of the world.  “What about the children?  Think about the children!”

But the children grew up.  And now, for so many social justice movements, the call is “What about me?”

It’s a huge shift that affects so many parts of our culture.  The impact is devastating.  Sure, some social justice movements have profited a great deal from the focus.  Green is huge at least in part because the privileged middle-class use being green as a social stepping stone to being worthy of notice.  Gay rights movements have flourished, at least relatively speaking, because of the “What about me?” focus.  The neurodiversity movement exists, at least in part, because of the “What about me?” focus.

But so much of life isn’t about me.  And it isn’t about you.  It’s about the children.

There are many programs that have “helping individuals with autism” as their goal, and those programs should focus on those individuals with autism.  First and foremost.  The needs of their families are a secondary consideration, but a consideration nonetheless.  But that is not what we have today.  Programs focus on the parents:  either directly meeting the needs of the parents or meeting the needs of the children as those needs are expressed by the parents. 

Whether I’m talking to a doctor, to a teacher, or to a social worker, I often have to fight to get them to focus on my children’s needs.  I can tell them some of what those needs are, but these observations are always going to be filtered through my own perceptions and my own understanding.  There’s so much I don’t know.  And, try as hard as I do to learn, there’s so much I will never know.  That’s why we have specialists.  Unfortunately, parents often encounter so-called specialists who devalue their children; thus, parents have insisted in having more of a say, in order to advocate for their children’s well-being.  But the self-absorption and self-indulgence of our culture is very seductive and many parents focus on the wrong things—things that have more to do with themselves than their children.

My children need those specialists to take a step back from me, my needs, and my perceptions.  They need to see my children’s needs as independent from my own.  And they need to help me better meet my children’s needs.  Often, meeting the needs of my children alleviates needs I had because of my children’s unmet needs.  But, the reverse is not true quite as often.

For example, Ben is staying up late into the night.  Tuesday it was until after 11pm.  Wednesday it was after midnight before he fell asleep.  Thursday it was 11:30 pm.  Now, if I were to express my need, I might say something like, “I need a respite worker to sit up with Ben so I can get some work done.”  From a purely selfish perspective, that is what I need.  Meeting my need would not help Ben, who needs more sleep, get his needs met.  But at least my need would be met.  But wait.  What if we could meet Ben’s need?  (Yes, we tried that with the melatonin, but obviously that’s not working so well any more.)  If Ben got to sleep at a reasonable time, my need would be met and so would his.

It’s a shift in focus.  And that shift is an unmet need for our whole society.