Tag: aspergers

Leaving church

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I reached a new low two weeks ago. My patience wore through and no amount of sympathy or understanding was going to save me.

We were sitting in church and Beth’s verbal ticks were firing on all cylinders. They were loud enough that I had trouble hearing the lessons being read, so I tried asking Beth to lower her voice. We think she has some conscious control over the behavior because she seems to be able to moderate her volume in other settings. So when she didn’t quiet down I told her she was going to have to sit outside if she kept it up. We sat in the back so something like this wouldn’t draw too much attention or embarrass her (or myself, perhaps creating a self fulfilling prophesy).

Well, she didn’t quiet down so I asked her to go out to the narthex until the sermon was over.

She said no.

“Come again, oh child of mine?”

That’s when I just about lost it, but I bit my tongue. When the sermon ended I told her we were leaving. When we got home, Beth sat quietly outside on the front porch, giving myself a time-out more than anyone.

And that’s when I started to question myself. It happens a lot when I resort to punishing the kids, but in Beth’s case I’m especially anxious about confusing symptoms with disobedience. I don’t want to punish her for being sick. I want to reward good behavior more often than punishing for bad. I want to be a good parent. I want to be bigger than her illness. I don’t want to be that angry parent we’ve all seen somewhere – flying off the handle any time their child strays from the narrow path they’ve laid out for them. I want her path to be wide, with as many forks as possible.

Today we’re skipping church. I just don’t have the energy.

Catholics don’t have a monopoly on guilt. I should know.

State of the Kauffmans

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The obvious place to start is Cheryl, the recently cut open.

The doctor said she’d have a rough weekend and she did. Hoo-ray for the wisdom granted those who study modern medicine!

It’s supposed to start getting better this week, so maybe we’re almost in the clear. It seems like the end is near. I mean that in a good way, but with every bit of sarcasm mixed in you can muster. In fact, it wouldn’t hurt to check with your neighbors and see if they have any you can borrow.

I’m just naturally moody. You must know that by now. I’m also growing more fond of italics.

Now comes the hard part. Beth has some problems. She’s had a lot of them, and she’s been having them for a long time.

I’ve talked about our kids before. How many people with kids and a blog haven’t? I’ve discussed some of what follows (eventually – meet the amazing master of burying the lede!) before, but I’ve tried to be vague. I’ve slipped up here and there, but I’ve tried. When I haven’t been vague, I’ve been talking to her first – talking about what each post means to me, and how they make her feel. I’m all too aware that words can hurt or embarrass. I thought about writing this post a week ago, so we sat down last week and had a talk. We had another one tonight. Writing by itself can be therapeutic, but something inside felt wrong starting this one, even if it never saw the light of day (or screen), without a pinch of consent. She may be young, and she may have her share of problems, but she can be pretty smart.

So we talked. This post comes from that talk.

Beth has been in some kind of therapy almost as long as she’s been in school; but the “almost” only works in this sentence if you include pre-k. At various points in her life she’s been diagnosed with sensory integration disorder, attention deficit disorder, attention deficit hyperactivity disorder, bipolar disorder, and obsessive compulsive disorder. (And those are just the psychological ones.) It’s been grand, this pediatric tour of the DSM, but it hasn’t helped much. So far it’s only succeeded in providing labels. It’s led us to play therapy, occupational therapy, behavioral therapy (never been much of a Skinner fan myself), and counseling. Lots of counseling. We didn’t see any benefits, so going against my fears, we tried medication. Lots of different medications. Most had no effect. Some made a small difference. A couple produced psychological states that scared the crap out of us (they quickly disappeared in a watery grave).

At times folks made us feel guilty. Some media personalities suggested kids are being coddled too much. Supposedly the real problem is they’re not getting enough tough love. Others suggested Beth isn’t that different from other kids. “Aren’t you over-reacting?” Or, “Beth is just gifted. Lots of gifted kids are a little different from other kids.” Testing seemed to bear some of this out. She scored very high on IQ tests (although I’m a bit skeptical of IQ tests in general).

Yet her emotional development lagged. Teachers noticed she wasn’t making friends. Again, that’s not uncommon for gifted children (so everyone says), but they also told us other parents were asking if their kids could sit somewhere else – away from Beth. Some of of the parents apparently weren’t asking. Then there were behaviors we couldn’t ignore: physically harmful behaviors (not to others or serious, but to herself and enough to be concerned).

Over the years my heart broke with every social slight, with every treatment, and with every pill. They were partly my fault, my mother’s family legacy – my genes.

I can’t help but think it all led to more taunting, more bullying – a vicious circle. I know there are no excuses for kids who pick on other kids. But let’s face it – they do, and we understand some of the reasons why – even if we don’t condone the outcome. Again, my genes… partly my fault.

I can’t help but think back to some of those counselors who said Beth was just acting up, challenging our authority. I think about the years of frustrated attempts at behavior modification, about exhausting my limited capacity for creativity thinking up reinforcements, losing my temper, and resorting to punishments (fuck you Skinner). I can blame the counselors, but I can only bring myself to blame them so much. Again, partly my fault.

Some of you have pointed to those big smiles, telling me I get a little credit for those too. I know it’s not all bad, but things have seemed so much worse lately, and I can’t blame it on the stress of Cheryl’s accident. It started long before.

This fall, middle school started out horribly. I don’t know what I said at the time, but if I said it was anything but shaky, I was either high on headache meds, manic, or lying. We might have reacted a bit rashly, but we switched schools a month or so before the accident. It seemed like she wasn’t ready emotionally (or mature enough) for a bigger school, so we figured a well regarded (and smaller) charter school might be the right kind of change. Some things got better, but others got worse.

The staff at both schools worked with us, and Beth’s grades couldn’t be any better, so it’s hard for me to blame the schools. But things are getting bad. Academics are only part of what we learn in school, and Beth’s self esteem is taking a beating. Schools can try to teach acceptance, and punish kids who bully, but they can’t force kids to understand, let alone be friendly. I can see her self esteem and confidence leaching away this year at an alarming rate, and being supportive at home hasn’t been enough. Even Tae Kwon Do has taken a turn for the worse. Instructors are neglecting her. None of the other kids want to pair up with her for drills – some actively protesting. I blame some of this on the school. It may be unconscious – something they’d be more than happy to address if I brought it up, but I think it speaks to their overall approach and philosophy. It doesn’t speak well. One more disappointment.

A couple weeks ago we got another diagnosis. It’s not new, but I’ve been skeptical. Can you blame me? Her last psychiatrist came to this conclusion after two years of visits, and diagnosis by trial and error. That was a year ago. Now we have a second opinion from a psychiatrist who came highly recommended by several independent sources. It’s the same opinion, and I can’t ignore it anymore.

Asperger’s Syndrome.

There’s a part of me that’s relieved by this one. There are some people who see this as something of a gift, rather than curse.

There’s another part of me that’s crushed by the words “autism spectrum.” They are just words, but to a parent they’re almost as scary as cancer – although they may be as meaningful. Many cancers are little more than an inconvenience. In Beth’s case, Asperger’s could be the same – a bump in the road growing up – an inconvenience rather than barricade to long term happiness.

Yet another part of me is horrified many recommend behavioral therapy.

After already switching schools once this year, her psychiatrist is recommending a private school. It specializes in children with particularly bad ADD/ADHD, but they’ve also had a lot of success with Asperger’s kids. The stigma of a “special school” scares the crap out of me. The lower expectations depress me. Part of me wonders if this is nothing but a would-be band-aid, putting off the day when Beth will be forced to deal with the world as it is, not the world as we would like it. But you know what? If she finds someplace that accepts her, that nurtures and grows her self esteem as her emotional development catches up, I wonder if a little bit of stigma won’t be easier to overcome. I wonder if she gets plenty of the world as it is when she’s not in school. If ostracism, self-loathing, and depression are the alternatives, maybe it wouldn’t be such a bad thing. Maybe what she really needs is acceptance from someone other than family. Maybe all she needs is someplace where she can find a true friend.

I go to church almost every week, but I don’t pray very often. Not really. When I do, it’s often for one thing: that I won’t screw up too badly where my kids are concerned. While I believe God exists, I’m not expecting his call. So what do you* think? Does it sound like I’m screwing up?

*I reserve the right to interpret no reply as a good reply.