9/28/2013

Believing in Magic or Something Like That

A little over five years ago I defended my master's thesis, which was complicated and had lots of variables...and exhausted me trying to remember the title in the correct order. I confess I'm too lazy to pull it up and check (but there is a link to the thesis somewhere on the side bar).

It was dry and scientific and proposed a study of chronic pain patients (waves her hand hi) examining the variables of personality traits (specifically neuroticism), explanatory style (see Seligman),  and religious and spiritual beliefs against satisfaction with life and adaptive coping skills. It would have been an interesting study to conduct, and it's a question I'd still like to see answered.

How we explain things to ourselves, what we believe in--whether God is there for us to lean on in hard times or whether we believe we are cursed, how angry, distrustful, and anxious we are--all of that obviously impacts how we cope, how satisfied we are with our lives.

The religious and spiritual components (or lack thereof) in our life have a profound impact on how we view the world, our place in it, and what we experience. It either arms us in metaphorical armor or it has us already on our knees with head bowed in defeat before the battle begins.

Stephen Donaldson's Thomas Covenant Chronicles were pivotal books in my adolescence. How Covenant faced the world, both the real and the magical, and his disability and his failures, was a blueprint, in a way, for how I viewed the world. Covenant was not a good man or a heroic man, and yet he found himself on the hero's journey, a quest he would have placed on anyone else but himself. As for adaptive coping, that was definitely not his strength. And yet, when the magical and later the real world placed demands on him, asked that he honor his covenant--what a name!-- he came forward and did what he had to, regardless of the cost to him.

His ultimate sacrifices, his willingness to uphold a covenant he was not originally accepting of, came to be a way of viewing duty and honor for me.

Avoiding Covenant's flaws--his tendency to hurt anyone who cared for him, to commit acts that violated morality--and then to spend his time making recompense--these competing ideas have remained present in my mind for thirty years now.

Who knew fantasy novels could be so incredibly profound?

Well, those of us who read them, of course.

It wasn't just Donaldson's fictional worlds that resonated with me and grounded  and guided me. Gene Wolfe's worlds were just as foundational. Honoring the dead, doing what is right, fighting for what you believe in, attempting to overcome your own weaknesses in order to be a better person...the fantasy novels of my teenage years had a profound impact on me.

I know now, of course, having read Joseph Campbell for the last twenty years, that these were hero quests, and that by having flawed, all-too-human and reluctant protagonists that the authors were allowing the readers to place themselves in the heroes' shoes, to see themselves on those journeys, and to believe that they, too, could do the right thing when it was required of them.

It is, I can see now, a lot to put on one's own shoulders, but it fit in with what was going on in my life then and now: the idea of being strong even when you feel and know you are weak, the requirement that you soldier on regardless.

When you are focused on this relentless march forward, talismans become vitally important. Sometimes it's the signposts we set up for ourselves (and here I think of King's Gunslinger series), the map we have with the goals laid out in front of us.

If we don't have talismans or signposts or things to look forward to--indicators that we are strong enough, that we have magic on our side, and that our progress, though slow, is visible, I think that adaptive coping becomes impossible.

Part of growing up and growing older means reconciling what we want with what we have, with accepting loss as a natural and inevitable part of life, and adding all that to our knapsack, heaving it onto our shoulder, and continuing our march.

It also means knowing when we can jettison some of that baggage. And maybe that's the harder part. Thankfully, if we have friends who love us, they can provide help and let us know when it's time to let go of what was never ours to carry. Just as important is letting us know when we have strayed from our path, when the signposts are deceptive.

My talismans are those friends. They make me believe in magic--that we are lighter than we otherwise look, and that our burdens are not nearly as heavy as we think.

9/20/2013

Two Words

I suppose confession is good for the soul.

Twice a week I drive a half hour each way to a small school to teach dual credit classes. Generally, I don't listen to music, so it's just me and the road and my thoughts.

Lately a series of two word statements have been rolling around in my mind, tripping on my tongue, eager to be spoken, acknowledged. Dealt with. Paid respect.

I'm tired.

I hurt.

I'm sad.

I'm unhappy.

Now, the trick is how these two word statements relate to each other. I've not been well in some time and that's beginning to piss me off. It also  makes me tired and unhappy and sad.

Add that to everything life tends to throw at us all at once. It's a wonder it's taken so long to own these statements.

Don't get me wrong. There's plenty good, too. Happy kids are on the top of my list. A job I love. That's good.  Husband who never ceases to surprise me. Check that on the good list, too.

But add another two worder that slips unbidden upon occasion.

I'm lonely.

I know friends come and go. I'm old enough to have seen more go than I ever though would even be there.

And I know I'm blessed to have the friends I do, friends who are unconditional in their care for me.

But still...those damn two word statements rest on my tongue and in my heart, and my mind knows there aren't enough new pairs of shoes in the world to fix those.

I also know these feelings will pass. And they'll cycle back around, too. It's life.

So, to make it more bearable while I wait for them to pass, I'm telling my friends.

I'm tired.

I'm sad.

I'm lonely.

I hurt.

And I know a lot of you are right there with me, feeling the same things.

We'll get through this. Together.


9/19/2013

Half-cocked

Most of the time now, I try to stop and reflect before reacting, to try to see the other side, to consider how my response will affect the other party.

Sometimes I go off half-cocked, like I did on the directory today in response to an ill-considered email to Kathleen and me. If I had my husband's long-suffering restraint, I'd have done what he would have and simply hit delete.

Oh for the gift of natural restraint. Ah well. Uglier words were exchanged, and I suspect that we both wandered off from the exchange suitably offended by the other. Maybe that party needed the release of a nasty response as much as I needed to let loose with some snark.

Maybe we're both better off or both worse off or not changed at all. Who knows?

It's been a crappy two weeks for a lot of us, but especially for Issy, Matt and Issy's siblings. I'd bet it's sucked for Kelli too. No one won here. There's a family in ruins.

There's another family ruined--two kids dead, their dad devastated and their mother in jail. One of those kids was autistic and one wasn't. They're still both dead.

We're reeling. We're hurting. And we'll take advantage of an available target to get some release.

And yet, there's no changing those two families and what they are dealing with.

Today's exercise benefitted no one, not really. It at least allowed for us to explain what the directory means to me and to Kathleen, so maybe that's a way to salvage the fact that two strangers behaved badly to each other. But just maybe.

9/18/2013

Barreling Forward

Whether we like it or not, life has a way of continuing to barrel forward. We keep getting up each morning and going through our routine.

We don't have much choice. People need attending to, things need fixing and shit needs getting done.

We want answers, immediately and conclusively. We want closure, law and order episodes where it moves from crime to punishment in 40 fast minutes, where people in authority get on their soapbox and let us know what the morally correct opinion is.

Real life ain't so easy or tidy, though, and people continue to divide on Alex and Issy and the latest, where a mother killed her autistic child as well as her NT child and tried to kill herself, rather halfassedly, at that, all because, according to the news, she didn't want to give the kids back to their father.

If we empathize with Issy's mother or Alex's mother, we're monsters. If we empathize with Issy and Alex, we're not walking in the mother's shoes and understanding how hard it was for the MOTHERS. I can only imagine it was a great deal harder on Alex and Issy.

There's no one right way to look at this, no one wrong way. We have what the mothers wanted us to see, but we don't have Alex's side, and we don't have Issy's. We'll never hear Alex's side because his mother succeeded. Maybe some day Issy can tell us hers.

These weren't mercy killings or attempts at mercy killings. They weren't "favors" either.

But the world keeps turning and I fear that their stories will slip away from our attention, that we'll forget that children are suffering, that families are in crisis, and that our attention will turn to the latest person who wrote a blog post that was politically incorrect to some group or another and NOTHING will change.

The world will keep turning, barreling forward and we won't maintain our attention span long enough to make any real, long-lasting changes.

And that will be a deadly loss of attention.

9/15/2013

9/12/2013

Recognizing Our Limits


A week ago I wrote Raw, about my reaction to the news that someone I considered a friend had attempted to kill her child and herself.

We're still trying to grapple with this, the autism community, and our roles in supporting autistic individuals and their families. The divide feels as if it's never been bigger, but we don't really know that to be true--we can't poll everyone, so we are reduced to these conclusions based on our friends list and the blogs we read.

Many parents who "knew" Kelli are trying to figure out what happened and how we can keep this awful crime from happening again. 

We are united, I think, in the uniform goal that no autistic individual should be harmed, not by his or her parents, not by his or her family members, not by school employees, not by anyone.

So we can lobby for laws, we can lobby for better support, we can lobby for education of parents and caregivers and responsible, trained respite care. We can lobby for insurance coverage of treatment and then require that treatment involve the entire family in as intense a form as treatment was for Issy. 

We can lobby to make sure there is oversight for treatment centers that staff is well-trained and compassionate and that the autonomy and agency of the individual in treatment is respected.

And unless those hands are throwing things, we can butt the hell out of whether an autistic individual's hands are quiet. We can quit using that terminology. We can quit demanding that people conform to a narrow standard.

All of us should be respectful of others. All of us should show restraint when it comes to being physically or emotionally aggressive to others. We should do a lot of things that we were supposed to learn in kindergarten.

But we don't. 

The reality is we can't control others' behavior or thoughts. We can't save anyone else but ourselves. Recognizing our limits, that we can only be accountable for what we think and what we do, is important.

We can reach out all we want online, but if we don't also reach out in our own community, our ability to be of true help is going to be impaired. Listening, caring and praying only go so far. If we have a family in need in our own community and we know it and yet fail to offer actual help, like a break for the parents, time spent playing with the child, or maybe even a meal brought over, we're nothing more than hot air.

We should be more than that.

9/08/2013

Ignorance Shows Itself



"violent autistic and asperger's sufferers should be locked up indefinately to keep the general public safe from their outbursts and actions. there is no way to prove that an autistic child with autism or aspergers syndrom will not massacre a classroom full of kids and therefore society must be protected from their threat."



Yes, Virginia, people are that ignorant and vile. In a news story about the attempted murder of an autistic adolescent, instead of focusing on the person who tried to kill her child, an individual decided the real takeaway from this is the forced institutionalization of autistics who act aggressively.


Uh-oh. Following that logic, anybody who's ever punched a wall, thrown something across the room, thrown a punch, kicked someone, bit someone needs to be locked up, After all, you never know when they might snap and go postal.


Perhaps the biggest mistake we make on the internet is reading people's comments on news stories because that's where humanity's dumbasses come out of the woodwork and reveal their bigotry, hatred, and ignorance.


And yet, maybe that's what we do need to attend to. There, people who comment in anonymity are free to let their hate flow onto the internet.


I think it would be a terrible omission as parents to forget there are people out there just waiting to hurt our children (and I don't distinguish here--we are all vulnerable). We need to remember that the world has more than its fair share of mean, cruel, and sadistic people and that sometimes, that may even be us--if we use the cloak and lash out at those we've decided are lesser than us, then we're part of the problem too.


People, even dumbasses who spew their hate and ignorance, should never be divided into better than or lesser than. All life should be sacred, and the emotional well-being of others should be considered.


Oops. Am I being hypocritical by calling those people dumbasses then? This is something I've wrestled with for four years, ever since I started the blog Even Dumbasses Have Feelings and wrote under the character of Thelma and Mama Hazel...


I think not because I'm not laboring under the impression that I am better than the person spewing the ignorance. Now, if said person realized I'd used his/her comment to lead this discussion on ignorance, would that have an impact on that person's well-being? I doubt it would have a negative impact--those people have shielding that prevents valid criticism from getting through.


I'm still sick to my stomach, literally, over the attempted murder of a child not much older than my girls. I'm still heartbroken at the thought of what Issy will have to live with--the knowledge that her mother tried to kill her. I'm still devastated for Matt and Issy's two siblings who are grappling with Kelli's actions. Those actions broke that family in a way that Issy's aggression never could.




I'm also sickened by the extremists, those who argue that not only are Kelli's actions entirely understandable, they don't warrant being charged with a crime. "You don't know how hard it is to live with an autistic child."


Bullshit. I know what it's like to live with three. And while it's not all rainbows and unicorns, there are surprisingly a fair share of rainbows and unicorns.


And no, don't tell me I don't know what it's like to live with a kid who acts out aggressively, either. Because I do.







Of course we as parents need support and training. We DO. We need to know how our behavior triggers our children's behavior, how to be consistent in our parenting skills and how to always honor our children's right to bodily integrity.


We like to put ourselves first, to think that people's actions that affect us are inflicted directly against us, but if you've spent anytime outside your narcissistic shell, you know that children sometimes push our buttons on purpose, but most of the time they're just being kids. It's us who take it personally.


Bottom line, when you become involved in raising children or working with children, you don't get to put yourself first--to think that when someone acts, those actions were meant to provoke you or fuck with you in some way. If you let yourself be swayed by children's actions and acting out behaviors as personally directed at you--if you put yourself central--you're human but you're wrong.


Harden your soft candy coating and get over yourself. You have to because when you are raising children or teaching children, you have to put them first and you can't let them hurt you so that you lash out. You have to practice restraint. You have to think before acting, and you have to consider where the child is coming from and what the child is trying to communicate. You don't get to hit back, with words or hands.


Ignorance...it's a massive stumbling block to changing how people see those with disabilities.


Unintentional ignorance can be mediated. Unfortunately, altering willful deliberate ignorance is another matter entirely...as is selfishness and self-centeredness.

9/06/2013

The Hope for Illumination: Issy Deserves Better


Yesterday morning, I read news reports about Issy and was gut-punched. I "talked" with friends in the community as we struggled to get a handle on this, to understand how it could all go so horribly wrong.

How someone we virtually knew could do something so premeditated, so horrific. I don't think we still get it. The news reports last night were worse--Issy's mom arrested, although still in the hospital. Issy still unconscious two days after her mother tried to kill her.

Her mother tried to kill her.

The autism community has divided into those who say we shouldn't judge Issy's mom, even calling for Issy's mom to NOT face any charges, and to those who place the focus on Issy, the one whose mother tried to kill her.

I have to stress that. Her mother tried to kill her. Her mother.

Nobody should get a walk on that. There were other choices. There are always other choices. 


Yes, we need to do more as a society to provide supports for individuals and their families. We also need to destigmatize developmental delays. We need to make it okay for parents to admit when they are ill-equipped and in need of education, support, and reinforcement.

However, we also need to hold people accountable for their actions. That's what the justice system is for. Some argue that Issy's mom snapped, that Issy's issues were so large that it's understandable what Issy's mom did.

If Issy had been a typical fourteen year old and Issy's mom had done this, the outrage from society at large would have been overwhelmingly on the side of Issy. Because Issy is autistic, people are out there arguing Issy's mom's actions are understandable.

No, they aren't. They shouldn't be. I argue that they are all the more heinous because Issy had autism, because Issy was so vulnerable and needed allies and parents who would defend and protect her against the world.

Issy's mom did that, fought for her. And then she decided that Issy and her being dead was the answer. I get being tired of fighting the world. But murder isn't the answer to that. Is never the answer to that.

If we can't get parents in the autism community to get that at a rock-bottom level, how can we ever expect society at large to accept autistic people as their equals, with equal rights and equal protections?

If we don't make this change, then we will always be in shadow, with only the hope for illumination.


9/05/2013

Raw

Another parent commits an unspeakable act against his or her autistic child. This time, though, both live, as they are found in time, but the autistic child may have suffered permanent brain damage.

We rally when we hear these stories on the news. We condemn the parent. We hurt for the autistic person. We note how the news coverage favors the parents' struggle while denying the autistic person's story as central.

It unites us in justified outrage. Our community is currently united with the story of Alex Spourdalakis.

So what do we do when it happens with someone we actually "know"? Someone who we've rallied around to help, to support, to care about and love? And I'm talking about the autistic child first, not the mother, who we also rallied around. We've come to know this family, care for them, raise money for them, offer emotional support, and shared their story. We've received support from the mother, too. It wasn't a one way street. It worked both ways.

We're talking real relationships built here. We rooted for Issy. We prayed for her. People raised money for her treatment. We had high hopes that the family would be in a better place when a few days ago, Issy came home.

And then the unthinkable happened. Issy's mom, our friend, apparently tried to kill herself and Issy. Issy, whose brilliant smile radiated out in the pictures we came to love seeing on the facebook pages, especially the Team Issy page.

How different is it when a story like this involves people we've interacted with? How much more muddied our emotions? Is this not the test of our convictions, the place where we find what we really believe?

My heart breaks for Issy and her family and it breaks for her mother, who I consider a friend. I can't excuse what Issy's mother chose to do. It's inexcusable. Unacceptable. Beyond the pale.

Issy deserved and deserves better. All our children do. We do.

In the end, the only person who knows what happened, what went on in Issy's mother's mind is Issy's mother. We can speculate. Some of us will sympathize, some will empathize. Others will hate.

I am left raw. I look at my three and I cannot imagine violating the covenant, if any is sacred this one is, I have with them to be their mother.

Mothers don't kill their children. No matter what.


My thoughts and prayers are with Issy and her family and all of us who felt we were a part of the Issy Team.