SED 008: Getting a Little Testy - text version

Hi, this is Stronger Every Day. I'm Bo Bigelow. 

Four and a half years ago I quit my law job to be at home with my kids. Turns out our daughter Tess has special needs. She's different. And now, so is everything else.  

Warning, the following podcast has swearing in it. You know, swearing makes me feel better, so you'll be hearing some. 

This is episode number eight.  

I've been a dad for over eight years now. I like to think I know what I'm doing. But sometimes I'm not so sure. 

I know my kids well. What they like, what they hate, and how to set them up to succeed. But the fact is, there are always tests. In classrooms and out in the world. And people are judging my kids, people who are never going to know them the way I do. And sometimes that is crazy hard.  

On this week's show:  this is a test. A test of your kid. An evaluation. Of them, and really, of you. As a parent. Are you doing your job? 

I got this certain habit from my dad. He's an engineer and worked as a patent attorney until he retired, so he's always appreciated good design, the way things are made. The flip side is, he hates when something is poorly designed, or even worse, made of cheap materials. He even had a term for it:  cheap junk. In my house growing up, there was no lower insult for the way an item is made. And now I have the same eye about stuff. Stuff that breaks, is designed to fail, to make you go throw it out and go buy another one. 

So there I am, picking up Dana at preschool. This was a few years ago. And I'm talking to his teacher, who's in her twenties, pretty friendly. From her I'm trying to get a sense of how Dana's doing, and what she thinks of him. I'm joking around, saying how in our house the battle about screen time has become a full-scale war. 

And then she gives me this odd look. I got little baby Tess on my hip, and she looks at her and then at me, with this weird pity, like she knows all about me, and she says, "Is that like your war against cheap junk?" 

And that's when I knew. This teacher didn't like me. She'd made up her mind. This was the kind of school where your kid isn't allowed to wear a t-shirt with a superhero or even any character on it. I have a boy. Which, you may have heard, boys often enjoy superheroes and characters quite a lot. No t-shirts with Yoda or Superman or anything. Sometimes I'd forget, and I'd get a reminder, almost a finger-wagging scolding from her. So she'd never like me. Which, is fine. I didn't really care whether she liked me. But I realized in that moment that she'd also evaluated my kid, based on the t-shirts thing, and him repeating my "cheap junk" diatribe.

She knew all about him and our family, she thought. There'd been a test, somewhere along the way, and I'd flunked it. She didn't believe me, when I said I'd been trying to limit the boy's screen time. She'd never been to our house, but--from that look she gave me--I knew she'd pictured it:  a disaster, a complete free-for-all, where dad is at home, and I'm perhaps irrationally opposed to cheap junk, but otherwise anything goes, and I'm serving up sugar to the kids all day long and parking them in front of cartoons for hours and hours. 

Look, I love teachers. My mom is one, my sisters are. But it happens, sometimes, to us parents--you winds up in a situation where the teacher doesn't get your kid. Maybe there's a learning style that suits your daughter really well, and the teacher doesn't do that, or maybe the school doesn't do that, and you gotta change schools. A friend of mine discovered that recently -- he and his wife lost a ton of sleep, wondering what the deal was with their son, what they could do, why he wasn't doing well in his school, and then they switched it up, tried another school with a totally different program, and the kid's now doing great. Loving school. There's nothing quite like the fury of parents, when someone tries to make them think there's something wrong with their kid, that their kid is a problem, a bad egg, and then it turns out that the kid was fine, and another setting was just the thing. There's that old saying - teach the kid they way they learn, not the other way around.   

There's other tests, that make me doubt myself, and they got nothing to do with school. Here's one for ya. It's a Saturday, I decide to bring the kids to this festival downtown. Tess has a new stroller, an adaptive one, which means lots of moving parts that rotate and click together, for her protection. Like a wheelchair, but more padded and a thousand times more complicated. I park, snap the thing together, and put her in it. But because it's new, I don't realize that you have to really push the wheelie part onto the seat part and lock them together with these two little clippy things. So there we are, walking in the street at the festival, and there's some power cords down on the road underfoot, all bundled together. The wheelie part of the stroller hits the cords and stops. And the seat part, not properly attached, keeps going. Tess in the seat tumbles forward. Onto the street. She lands on her face. Shit. Just about the time I'm thinking I'm the worst dad in the history of parenting, as she's shrieking and I'm scrambling to get her out of the seat and into my arms, I realize that all these other adults are at my side. They saw her wipeout and they want to help. But it turns out that the festival is not kid-friendly at all. I read about it in the paper, but evidently not carefully enough. The festival is about beer, and not much else. It's only around 11am, but the festivalgoers around us are super hammered. And there's a distinct smell of booze, and they're helping me get Tess back in the chair, and they're pointing out to me that, yeah, you have to click the wheelie part to the seat part, see here? And Dana is there too, soaking it all in, imprinting the whole dumb event into his brain, how Dad brought him to a beerfest when he was seven and made Tess fall on her chin, and how even the drunkest of the people around us were looking at me and wondering just what the hell I was thinking. Yeah. So that happened. Epic fail of stroller test. I can't make this shit up.  

This all comes back to why we parents generally hate tests. It's because they're a measure of how we're doing. 

When it comes to Tess, she takes tests too. Her school is fantastic, because they use something called authentic assessment. The school's director told me that it's the measurement of intellectual accomplishments that are worthwhile, significant, and meaningful, as compared to multiple choice standardized tests. They take time. They can't assess Tess without knowing her. Which means everything, to my wife and me.  

But there are other evaluations of the T-Bird that don't follow authentic assessment. And those evals I freakin hate. Mostly because they're multiple choice and don't acknowledge the gains we've made with Tess. Instead they focus on what she can't do. There's sometimes whole pages that break my heart because I have to mark "never," over and over. Expresses anticipation over future events like birthdays and holidays? Never. She has no idea what day it is or what day is coming. Exhibits caution when crossing busy streets? Never. She can't walk on her own. We carry her everywhere, and she's never in a busy street. I wrote about these evaluations recently on The Mighty, and some other parents chimed in. I talked to some of them. 

There's this boy in Connecticut named Dominic. I talked to his mom Chris Faressa, about the tests, and she told me about his behavior.  

Chris: You know we as parents, he is at an age Bo, you know, I'm gonna be 45 this year, so I had him later in life. And you know, it's one of those things where when you have a child later in life and you didn't think you could have kids, and not to get into the backstory but, you know, all you want is your child to be happy. And you tend to give them everything you can so you have a happy baby. And then you realize that when they're like two and a half almost three, like oh my God what did I do? 

Chris: So do I have a spoiled child, number one. You know so we were struggling with is it the only child syndrome, is he a little spoiled, used to getting his own way. Is it now, now I think back is it some of his issues, or is it his age?  What is going on? 

Dominic didn't want to socialize with other kids at school, he was running back and forth a lot, walking on his tiptoes. So they brought him to the doctor.  

Chris: It was one of his visits, and he exhibited the worse possible behavior between running back and forth, not listening, just repeating himself, anything he could have done.  I was like wow, look at this, he exhibited in front of the doctor.
And she was like, okay maybe we need to look in some another direction.

Chris feels the way I do about the tests, how black-and-white they are. But they've worked out pretty well for Dominic.  

Chris: So he got services, so he qualified for services through the town, so he's now, since October til the present time, he's been in a pre-K program, in meeting with the speech language pathologist, meeting with the OT person, and really getting some special treatment, and we've seen a huge improvement since he's been getting this more focus, but he's with other kids.

I also got to talk to someone who's already been through all this. Years and years of these kinds of evaluations. Someone with an adult child with special needs.  

Kathy: Well, I would say that the support intensity scale interview is absolutely the most heinous thing that ever happened to us. 

That's Kathy Wagner. Her daughter Molly is 26. The test she's talking about there, the support intensity scale, is a new rule to figure out whether people like Molly should get funding to support their needs. The state forced Kathy to explain how much support Molly would need in order to take a college course or hold down a job. Molly can't brush her own teeth, Kathy told me. If she gave Molly a pencil, she'd eat it or put her eye out.   

Kathy: It's a perfectly good tool for certain individuals with disabilities, but not people with profound disabilities and a lot of medical needs.

Kathy told me the secret to surviving the evaluations, the way they ignore the gains, is to split myself in two. There's the me who brags about Tess's walking, and there's a separate me, who downplays everything we've worked for.  

Kathy: I have changed my approach to that. I really talk more about her deficits in that situation because that's where you get the funding. So it's kind of everything splits at a certain point where you know what your child's needs are and you know how hard you've worked for them, but when it comes to talking to people from the state, you don't talk about that stuff. You talk about deficits because that's how you get funding so you keep your mouth shut.

Kathy's been doing this a long time. She's seen cookie-cutter systems come and go. So why was this recent round of evals so tough on her? 

Kathy: My point is you're asking me to make up stories and I don't see how this is valid and it's also quite upsetting. It's not the way I think about Molly. We don't think about her having a job, we don't think about her going to college, it's just not 
something that, we realized at a pretty young age that those things aren't gonna happen. It's just bizarre to be asked to do that. 

Kathy: Well it's just, you know, brings up old wounds. You know, that's stuff that you think you process and get over, but in truth you revisit those things at certain stages in life and the transition to adulthood is a big one. I don't need anyone pushing those buttons any more than they're already pushed. And it's just unnecessary. 

Parents, you're doing great. Really, you are. Look. If someone's evaluating our kids, and they either don't have time to get to know the kids, or even worse, they don't care, why should we give that person the power to make us feel doubt? 

I took my kids to a beerfest. Accidentally. Dropped Tess on her face. That day sucked. But I'm okay with it. I made a mistake. I don't care what kind of dad those drunk-ass people in the street thought I was. 

And I also don't care that Dana's preschool teacher thought I was nuts and assumed that I had no clue what I was doing.  

There's gonna be more tests. I'm doing my best. That's enough.  

That's it for this week's show. 

I'll return next week. 

A huge thanks this week to my audio consultant, Tony Magrogan. Aside from hooking me up with major help in making this show sound better all the time, Tony's also a helluva bass player. 

If you like this show, spread the word and tell somebody you know.   

Will Sakran wrote and performed "Innergroove," which is our closing theme. Will's also a hardware design engineer. He used to work at Fisher-Price, making the hardware inside talking toys, but he quit and went out on his own, starting Metre Ideas and Design. I'll put a link in the show notes.  

Do you know how to get to the show notes? If you're listening on iTunes on your phone, click that little lowercase i next to each episode, and voila, there they are. They're also on our website,  

Thanks to my man Brad Peirce for co-writing and playing guitar on our opening theme.  
Thanks for listening, and see you next time.   

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