State of the Kauffmans
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.
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.
John and Cheryl:
I’m with Stephen . . . first, my God, but there is love and angst and LOVE (did I mention HUGE LOVE?) with every word of this. No . . . not screwing up in the slightest.
Second . . . I routinely hear from people regarding my little Demon that I must be a “bad” parent. Or inattentive (else, how could he create so much havoc . . . but really, unless I duct-taped him to me, I can’t possibly follow him around 24/7). I had one person from my writing blog contact me via email that I just needed to read some right-wing nut job’s book that includes spanking. I had a woman at a cocktail party tell a room full of people it must simply be that I’m not stern enough.
I do not pretend that any of my children, including my youngest, have issues like Beth. But I do know I won’t label them in any way. And that they arrived from God as they are and perfect. PERFECT. Regardless of their difficulties. She is who she is . . . and I am sure you will be able to perhaps do some interventions and things to help her make her way in the world. But in the end she is Beth and she has two parents who love her so much.
I like Richard’s quote. Perhaps she just sees the world differently.
I think you should do what you and Cheryl are already doing… loving her like she is the best girl in the whole world because, you know, she is.
And then trust in yourself to do the right thing. Through your writing and our online conversations, I know… I know… that the best girl in the world has two of the best parents in the world.
It is only with the heart that one sees rightly. What is essential is invisible to the eye.
Thanks everyone. One of the tough things about all of this has been Cheryl and I felt like we were running out of things to try. Some of that changed today. We knew we had some choices, but they seemed like bad ones. After listening to you they don’t seem so bad.
Brian and Becca, thanks as always. The more we hear about the school her psychiatrist recommended, the more we like what we hear.
Stephen, I hear you. Beth’s run the gamut of labels tossed around by various teachers. I’ve tried to hold tight to the loving, accepting, embracing center. I cringe thinking about those times we’ve relented to the onslaught. It’s almost funny, worrying about Beth – when she has reminded me (on a couple of occasions) it’s ok I’m not perfect.
And Kim, thank you for being so generous with your time. It’s funny… this morning when I left for work and mentioned your comment, Cheryl was worried she was going to be a bother. You gave us a lot to think about, and feel good about. My father was the type who always said, “if you’re worried about something, do something about it.” I needed to be told a lot (the poor kid is definitely my daughter). Not much more than 12 hours after putting up this post, Cheryl and I had several things we could talk about doing. I can’t tell you how good it feels to do something.
Resist to urge to beat yourself up over things that cannot be controlled.
You ARE doing the right things … you care and are concerned; if I were to judge, it would be the father who looks the other way or says that’s the wife’s job who would be the one “screwing up”.
BTW – Sorry to hear Cheryl had a rough weekend, but I’m positive that every day will be a little better. Now is the most critical (and achy) time — while the bones are stitching.
By early April you should ALL be able to enjoy the RenFest in Tampa (I pray it will be so)!!!
When I read Look Me in the Eye I couldn’t put it down.
I’m currently reading Look me in the eye, which is a coincidence.
Big hug to you and Beth and Cheryl. I’d say the best thing to do for Beth is behavioral training, not therapy: find some one or some way to teach her how to interact in society or at least fake it so she can get along and reduce bullying and teasing. And/or find her a “special school” with other kids like her and teachers who understand why she acts the way she does so there is less of it.
She does have wonderful gifts, she just doesn’t “get” the way society works or the nuances of behavior most other people have.
By the way, I forget to mention, I have three girls on the spectrum, 14, 12 and 8. They each have autism, not Asperger’s, but I still have info I can share if you’d like.
I’m Kim Stagliano. I live autism. I eat it. I breathe it. I think I can help you. Email me at KimStagliano@gmail.com. There’s much you can do to help your precious Beth.
No reply from me certainly DOES mean good reply.
It’s hard to know what to say. I have a 13-year-old daughter and yes, we have some issues. Next week is her first psychiatric appointment. And I’m not the least bit concerned. Why? Because I had issues when I was in my early teens. I went for days at a time without speaking and some authorities suggested I was retarded.
I have a couple of close friends whose children have been labeled one thing or another. I know the children well; I don’t think there’s a damn thing wrong with them. They’re not in the pack, to be sure, but to me that’s the good news. I wasn’t in the pack either. The pack is the last place I want to be, or want my daughter to be.
If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away.
When I was a kid we didn’t have all the labels and diagnoses we have today. I’m sure I would have been labeled, diagnosed, and treated in some manner, were I going through my teens today. By all means let’s take these things seriously; my daughter is going to that appointment, and I’m going with her. At the same time let’s keep in mind that the last thing anyone should want to be in this world is normal.
Labeling is disabling. You don’t want to tell your kid she’s abnormal, because she’ll react to the designation, almost certainly negatively. Nor do you want to tell her she’s perfect, for exactly the same reason. In fact, you don’t want to use ANY label to describe her. Labeling is disabling. She is who she is. And judging from her picture, if that face appeared in my family portrait, well, I’d be grateful my genes got it together and did something right.