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 my daughter Tess has special needs. She's different. And now, so is everything else.
A bit of warning, this podcast has swearing in it. I find that swearing always makes me feel better, soooo you'll be hearing some language.
This is episode number two.
Tess has a lot of shit going on, disability-wise.
She has global developmental delay, meaning she's behind on her milestones.
Hip dysplasia, which has set her back in terms of walking.
There's cortical visual impairment. And others.
Luckily, with all these things, we pretty much know what to do to help her.
And we're doing it.
And they're doing it at her school.
But there's one thing we think she has, and we can't do a damn thing about it.
We can't even get a diagnosis.
And unfortunately, that one disability affects all the others, because it means we can't talk to her.
Or at least, when we talk to her, we don't know for sure whether she can hear us.
On this week's show: Tess listens, with every ounce of her little five-year-old being. Is any of it getting through?
A couple years ago, we managed to get Tess in to see a woman from Pittsburgh named Dr. Christine Roman-Lantzy. Christine's an expert. She wrote the book on cortical visual impairment, or CVI. She agreed to take a look at Tess and see whether she had CVI.
Turns out, yep, CVI big time.
Now, Tess's *eyes* work fine, apart from some nearsightedness, for which she wears glasses.
But when it comes to her brain *processing* that visual info, that's something else.
She has trouble with that.
And over the last couple years, we've noticed she doesn't respond when you say her name. If you come in and slam the door, everyone in the room'll jump, but she won't. She'll turn in the direction of the sound, slooooooowly, on a delay of like five seconds. And other times, you'll talk, make sounds, snap, clap, whatever, and she'll never respond at all.
Her ears work fine. We've had em tested a few times.
But we've started to suspect that she doesn't just have *visual* processing issues. We think she has trouble processing *sounds* too.
There's a name for that.
It's called Central Auditory Processing Disorder, or CAPD.
But we're totally hosed, for two reasons.
First, you can't get tested for it until you're around 7 years old. It's just generally not done.
And second--much much worse--even when T is old enough to get tested, they're gonna ask her to do stuff that she just doesn't do. Things like stay still in a chair and raising her hand when she hears a sound. Things like repeating words back to you. Try to give Tess a test like that and she'll bare her fuckin teeth. Literally. Get the band-aids ready.
How'd we test her hearing? Well, we hooked up electrodes to her head. (That went over great, as I'm sure you can imagine.) And then played some sounds and recorded her brain wave activity in response to those sounds. It's called an ABR, or auditory brainstem response.
Can't we just do that to see what sounds she processes, and how well? Nope.
There isn't an electrode test for this. Can't go to the brain and see what's going on. So we're out of luck.
Think about what this processing problem could mean. All that goofy singsong narration crap you do, when you're teaching your kid how to talk? Like, "sto-ore, we're going to the st-ore" or "bull-shit, that pass interference call was bull-shit." Yeah, we've been doing that for years with Tess. And for all we know, none of it's getting through.
So she doesn't really have words. Just ma-ma-ma and more. She has a few signs, but most of the time she gets what she wants by yelling. A lot.
Bo: Hey what do you think is the hardest part about having Tess in our family, for you?
Dana: Um, yelling. Definitely the yelling. That's one of the big main things that I hate.
That's her brother Dana talking. He's 8, and is generally really patient with her. But even he has his limits.
Bo: What is it about having the sound of her yelling that bothers you so much? So what? Big deal. Like you play loud music all the time, what's the difference?
Dana: The difference is that this really ticks. I mean, it's not like you're listening to music. It's like somebody's punching you in the face millions and millions of times.
Bo: That's what it feels like?
Dana: It just feels like that, yeah, except it's in your earlobe.
There's a lot of yelling in our house in general. Not the fighting kind. But mostly, like when I try to read the paper. You know what I'm talking about? This happen to you? You sit down, and your newspaper is like one of those greeting cards that plays a song. As soon as you open it, it pulls this tab and activates some module, and the kids are yelling. Five minutes before that, they were like, fuck off, but now it's like Dad, I need you, something's on fire.
[sigh] There is not enough whiskey.
Anyway, it sounds bad, but I end up comparing. Observing Dana to see how *he* processes what he hears. We're entering a golden age with him, of us saying stuff and him listening and doing what we say.
At least that's what I hope is about to happen. Up til now, sometimes I've said -- forget listening, is he even hearing me?
Man, I had the same deal as a kid. I remember that feeling, my mom or dad in my face, saying something I knew I should be listening to, but my little mind's ability to pay attention was short-circuited by a cocktail of Pepsi and Skittles. Who knows, that fog could also have been Nintendo-related.
But the fog. Those weird deficits. That's how I ended up not listening. Riding back across town with my folks, through the snows of Milwaukee, scrambling to get to Chuck E Cheese's before they closed, to retrieve my winter jacket after a birthday party.
And that's how my son can memorize his buddy's instructions for setting up a minecraft server but can't remember to flush the toilet.
And how, as I'm pulling back into the garage after a long afternoon on the soccer field, he tells me no, I don't have all my stuff after all, can we drive all the way back to get my goalie gloves?
Side note: this could also be the multi-generational shortcoming on my side of the family, of leaving shit in places. When they mapped Tess's genome and took DNA from my wife and me I joked that they oughta isolate my gene for returning home without my wallet.
How should I get through to the boy? I see the fog. I talk into it, knowing it's pointless. Sometimes I say what my grandfather said to my dad, who then said it to me: "You don't listen. You don't listen." As if saying stuff twice is gonna work. Heck, sometimes it does. Like I said, with Dane it is getting better. With him the golden age is coming. Sorta.
As for Tess, I got nothin'. I haven't cracked the code to her processing issues, her CAPD. No clue what's getting through to her for sure, except making certain sounds right up against her cheek, sounds like mm and ooo. That and the whuh-whuh sound, like the beginning of Bon Jovi's Livin on a Prayer. She digs that in a big way. And I'll keep talking, I guess, in goony voices, about going to the store, and about terrible calls in football games.
I need your help with this show. Wait wait, don't hit stop. I'm not asking for money. All I need is this: go to iTunes. Find this show. And rate it. No need to write a review, but if you want to, that would be cool too. But rate it. Please. Do it now. Thanks.
I got a message from Anna Ault, her daughter's Olivia, age 7. Olivia's got cortical visual impairment and developmental delays from an in-utero stroke. Anna needs help. She wants to take Olivia on a plane, but can't see how to do it. She tried bringing her on the polar express train ride and it didn't go well. Olivia has fears and anxiety in certain situations, Anna thinks maybe sensory overload. Olivia had a panic attack on the train and they had to get off. Even though they talked about it with her and even watched the polar express movie weeks in advance. Anna would love to take her to Disney, but - they're earthbound. Has anyone else ever had this issue, parents of kids with CVI, or even typical kids? It's a tough question. If you're listening and you have any ideas to help Anna and Olivia, tweet at me, @strongerpodcast on Twitter, or write me on Facebook - facebook.com/portlandroots. Thanks.
This week I found out about an awesome book. It's called Dads of Disability, and it was put together by a guy in New Hampshire named Gary Dietz.
Now, I see a lot of stuff online and in print, and some of it grabs me, and some of it doesn't. And every so often, something is so, relevant for me. It hits me on, like, every level. Like it was made with me in mind. If you could score things, based on how suited they are to you, like give it a suitability quotient, or SQ, and it was 1 to 100, and 1 is totally not suitable, but 100 is like perfect for you. This book by Gary Dietz is SQ 100 for me. Here's why. He noticed that most of the support literature about disabled children focuses on women, but the men are totally left out. What about dads, right? Yesssss. Yes, Gary. You read my mind. This book is for and about the dads. And it's not sappy and it's not pandering, it's just real. About the process that a dad goes through, the sort of mourning period and transformation and transition later. If you're out there and you're a dad to a disabled child, or you know one. get a copy of Dads of Disability. I just got it, and within the first few pages I found myself nodding my head over and over and over.
I want to say thanks this week to my remote audio consultant, Tony Magrogan. I used to be in a band with Tony, and when we first started out, we did our recording with a boom box in the corner, press play and record at the same time. How times have changed. Thanks for the help, Tone.
And that's it for this week's show.
I'll be back next week.
Special thanks to Will Sakran, who wrote and performed the music you heard a minute ago, our closing theme, which is called "Innergroove."
Also special thanks to Brad Peirce, who co-wrote our opening theme and performed on guitar.
If you like this show, you might like another shows in the collective known as Portland Roots Media, a series of podcasts made right here in Maine but not just for Mainers.
Check out portlandrootsmedia.com.
Many thanks for listening, and see you next time.