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.

1 comment:

usethebrains godgiveyou said...

You're a gutsy woman, Kim. I am in a stupor about all of it. A part of me knows that we are all only a step away from insanity. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2922347/ There are many reasons, none justified, for filicide or attempted filicide. It seems often there is a precarious hold on reality for what ever reason, often having nothing to do with the child. I had read a very personal write up from an autistic woman who as a child endured enormous abuse but she removed it. We don't know how many kids live through this. The primary thing I hold on to is filicide is filicide, regardless of the reason, and autism activists are right to call it what it is. On the other hand, having an autistic child may send an emotionally weak person over the edge. But it is never the fault of the child. I don't believe an emotionally healthy woman kills her child, regardless.

I think, like people ready to commit suicide...there are signs that are only figured out after the fact. To be able to help more vulnerable members...

You know I have been vulnerable to mental illness in my life. For a brief second when Ben was first diagnosed, I thought...maybe it would be easier if we just walked into the ocean as I had heard Chinese women sometimes did when life became too much. You know, I was on a pretty big pitty pot. So a part of me knows if you are not in the best of mental health, you can get waylaid in your weakness. Of course, I never acted on it. I never acted on my suicide ideation, either. And here I am, all bright-eyed and bushy tailed, uhm...kind of.

What helped me with the frustration when Ben was young and I was feeling so sorry for myself was a passage from the Bible. Funny, at the same time, my mother sent me a card with the exact same words that I framed and put on the wall. Now, I'm not going all Jesus Freak on you. It's just wisdom. Every time I was ready to explode I would literally take it down from the wall and hold it in my hands. Sometimes it would smack some sense into me. Sometimes I would be shaking.

Do you LOVE your child? Oh, isn't love just such a nice, fill up your heart feeling? HELL,NO. Love is a verb. A freaking verb. Love is there when that feeling of rainbows and unicorns is gone. It is freaking blood and guts.

Now, my problems were all because I was in love with the idea of love regarding Ben. I really didn't know how to love, only how to feel an emotion that disguised itself as love.

The wisdom of the ages, the wisdom of my mother, who I adore...came to my rescue.

"Love is patient,
Love is kind.
It does not envy, it does not boast, it is not proud.

It is not rude,
it is not self seeking,
____it is not easily angered_____
it keeps no record of wrongs.

Love does not delight in evil
but rejoices with the truth.

It always protects,
always trusts,
always hopes,
always perseveres."

I would look at that and hold that framed card in my hand and realize I was being !@#$% up.

Gernsbacher did a study on parental stress, showing, like beauty, it was unrelated to the degree of disability of the child. Stress was in the way the parent perceived their child. Perceptions can change. Look for signs of inability to handle stress, to help our sisters. Wht would I do? I don't know...I never thought I was strong enough to handle a child with "behavioral problems"...maybe I'm strong enough to help a friend with mental problems. But there is really nothing I can do. The healing, the change, must come from the parent, themselves, if they are capable.