Our Reality TV Moment

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Nothing like the last minute for a Down Syndrome Awareness Month, 2018 post:)

Taublieb Films came to Portland, Maine from Malibu, California a couple weeks ago to film us. Our family will be part of Special Olympics 50th Year Anniversary documentary-short film series produced in collaboration with ESPN.

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photo credit: Taublieb Films

Thorin has loved Special Olympics since he was 9. Most of his other activities are inclusive– which means he is usually the only kid with a visible disability and almost always the only kid with Down syndrome. Special Olympics has been an important community for Thorin.

The film crew was Paul (Taublieb), David and Dave. They were awesome and authentically into learning about disability. Dave is 21 years-old and putting himself through college. After Thorin read from The Magic Tree House Series Dave said, “I read those, too!”

When he noticed Thorin watching Ben 10 on his iPad he said, “I liked Ben 10!”

When I relayed that the best way to clean an apartment with a kid was to crank En Vogue and sparkle, sparkle. Dave said, “That’s what my mom did.”

Dave saw Thorin– who has Down syndrome– was like him. And- that has been the entire point of my writing about our lives for the last eight years.

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Dave and Thorin

How did we get to be a part of this surreal moment? Not entirely clear but super grateful to contribute.  Our story is part of a segment titled ‘Parents With A Megaphone.’ The film is about three parents who have children with Down syndrome and are advocates. The real stars of the short film are Gail Williamson — Jamie Brewer’s agent among many other actors and John C. McGingley   notably from Scrubs.

As my friend Gina– said, “You’re the regular parent. The one who thinks they can’t do anything. That’s important right now.”

If interested in seeing us click here now!

If you are new here please explore and check out my book, Not Always Happy.

 

 

 

 

 

 

 

 

 

Parents, stop worrying about if your kid is a happy camper

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If that title grabs you please hop over to CNN Opinion to read me there.  You won’t be sorry. xo, Kwp

Thunderstorms

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Spooky Street

Spooky Street, Thorin Wagner-Peck

A thunderstorm passed through yesterday afternoon. My only complaint was that it was too short. Thorin and I were both hoping for a doozy of a storm.

My younger self, my teen self and my early adulthood self would be shocked by my enthusiastic response. I used to be terrified of thunderstorms. Growing up in Wisconsin– you knew you would be in the basement a few times during the summer because of tornado warnings.

Much earlier in life I loved storms. My dad told me the the great crashes of thunder were the angels bowling. I didn’t imagine small, delicate or obedient angels but huge, powerfully built women in swaying robes smashing strikes.

My mother did not love storms. She couldn’t contain her own anxiety about them so she behaved as if it was a valid, imperative and reasonable fear that I should also adopt. She successfully swayed me for years to fear storms coming. This tactic didn’t work on my siblings. I was more malleable.

Today is the second anniversary of my mom’s death. She moved from Eau Claire, Wisconsin to be with us transplants in Portland, Maine. She died four years later in our living room with family members from here and there. We had hoped for a few more years than that. While I miss her I also value the fact we had real conversations before she died. Like the fact she scared the crap out of me– a lot.  

On a practical level when the storm sirens went off  I hated running to the basement without a book, a magazine, a flashlight and a set of street clothes. These things invariably started at night so I went in the basement in pajamas but I liked having options. Everything fit perfectly in my pink 1960’s size cosmetic case. It was packed and waiting patiently for me on a shelf in the basement from June to September.

One of the best storms: Anna who lived next door to us was older and she didn’t have a basement so she would come to our house during tornado warnings. Her daughter lived in LA. That’s right, California. She was a secretary to the president of S.A.G. who at the time was Charlton Heston. On one particular trip back home to visit her mom the sirens went off. Anna and her daughter both came in the side door to the basement in their pajamas. I was the luckiest kid in the world!.Hollywood came to my basement and was trapped there by a storm.

Anna’s daughter did regale us with some funny Hollywood stories, none of which I remember. What story sticks out is her enthusiastically bragging that her nineteen year old daughter spent a weekend in Palm Springs with Clint Eastwood. 

If I could direct your attention to the scene in totality: we are in a basement in Wisconsin in the 70’s. An adult has just acknowledged human beings have sex and it’s so great it’s worth bragging about who you did it with. Who cares about dying in a tornado when there’s SEX talk?

I could see my mom trying to figure out how to stop her from continuing her story on moral grounds. I also think she may have been torn between her Lutheran upbringing and being a little star struck herself. My parents both loved Clint.

During my mom’s moment of indecision I directed a question to our resident Rona Barrett, “What did your daughter pack for the trip?”

That snapped my mom into decision, “Okay, that’s enough.”

The next day my mom and I talked about the fact we knew Clint Eastwood was married because we saw he and his wife, Maggie, on The Mike Douglas Show.

Years later, I’m living with my girlfriends Gina and Julie. I’m at the apartment alone taking a bath. I’m relaxed. I’m enjoying being alone. The phone rings. I answered it because that’s what we did then.

It’s my mom, “Kari, I shouldn’t even be calling you right now because I could be electrocuted but a big storm is coming!”

“What?”

“Go downstairs to your neighbors now! You need to be in the basement now!”

“I’m in the tub. It’s 9:30 at night.”

“Judas Priest, get out of the tub! You could be electrocuted right now! Tornadoes can take a whole floor off a house.”

I could already see myself getting dressed and going downstairs.

“This isn’t a decision you can get back!”

“Okay, I’m out of the tub.”

She frantically offers more gruesome imagery as I quickly dressed. I’m at the point of panic by the time I get downstairs. I knock but no one comes to the door. I have never really talked to the neighbors. It is a young wife and husband with a little boy. I don’t hear movement. I’m knocking more energetically now because it’s clear I not only have to save my life but theirs as well.

I find the door is unlocked. It’s dark inside but not all the way dark yet outside. I can see the living room and further on the dining room. I also see a stairway and assume that’s where the bedrooms are. I go charging up the stairs yelling, “Wake up!”

Here’s the predicament– once everyone is up including a visiting grandmother I hadn’t planned on– they think they have a home invasion on their hands. I see myself as their rescuer. 

After proper introductions everyone was very nice about it. I could tell the husband really wanted me out of there and he hinted that perhaps my mother was a worrier. He checked the local TV stations for severe weather reports. Nothing. He also agreed to my request to call one of the stations to make doubly sure. From that night on when our paths crossed they laughed and shook their heads at me in a not mean way.

My last storm tale of the evening is not only memorable to me but memorable to anyone living in my hometown and surrounding area. It was the July 15th, 1980 storm; aka, The Big Wind. From the forecasts it promised to be more than a doozy but a mini-disaster. My boyfriend was at work. Our apartment didn’t have a basement. Julie my former roommate and childhood friend was living with her boyfriend who was also working and their apartment also had no basement.

Julie and I drove over together to my parents house to wait out the storm with my mom and younger sister, Betty. My dad had spent the day golfing a few hours away and he was now on the road with a group of friends headed home. When he called I asked my mom why she didn’t tell him to pull over somewhere.

She chuckled a weary wife chuckle.

Betty had kindly assembled our storm provisions to take to the basement: 2 six packs of Coke, marshmallows, potato chips and cigarettes. It isn’t like bottled water was everywhere then. No one carried water anywhere unless it was in a canteen and you were camping, maybe. And– we were very unhealthy.

Once the storm started in earnest we heard a horrible wind that rumbled  like an out of control freight train.We lost the weather reports on the little plastic radio in the basement when the power went– which would stay out for days.

I broke up some nervousness and monotony by screaming bloody murder at the sight of a June bug in the bathroom. It was dead. Betty admitted to planting it for me on the toilet seat. Even in a tornado Betty demonstrated her little sister role to perfection.

Julie was becoming increasingly worried about her boyfriend who had decided to drive toward the storm to be home. She was upset. She expressed her fears. My mom raised her voice, “If anyone’s going to get killed it’s my husband, okay? Not your boyfriend.”

It was a funny line but it seemed rude to laugh. Julie looked  miserable.

God bless, Mary, she was our Tempestas.

Post script: The photo in the post was one of Bubba’s favorites of Thorin’s photographs.

 

For What it’s Worth

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June 21, 2018

Beach Season 2018 is on officially for two reasons: Summer Solstice and we had a quorum at Beach Club. The current proposals and plans for BC’18 are not available to the public. Sorry.

Ella–who’s 13 and therefore has boundless energy– did the most brilliant thing ever. She built a four person reclining couch with headrests in the sand. I would have included a photo but there didn’t seem to be a graceful way of moving out of my sandy La-Z-Boy to get my phone other than clawing myself out.

A theme emerged during our stay, for me at least. I observed. Read: eavesdropped on mind-blowing yet dated, pedestrian dialogue. The general topic would be adolescent transactional interactions by class.

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Thorin & Aunt Betty

While we– Betty, Thorin, Ella and me– were eating at the picnic tables next to the food truck the surf camp kids arrived for lunch. They looked like a tribe of lanky, fit Caucasian adolescents with gleaming hair and beautiful teeth. Our favorite beach is in a coastal suburban area that most of us drive 20 minutes to from Portland.

At first I genuinely happened to observe a young Andrew McCarthy rich kid character and his friend an equally young but not rich— blond Keanu Reeves. I can’t believe no one thought of that movie combo in the 80’s!

I had a ringside seat to this Andrew dropping his change. The coins fell somewhere in between the slats on the walkway. At first he leans down to retrieve them, then thinks better of it.

“Forget it, right? It’s not like it’s my money,” he says to Keanu.

Correct me if I’m wrong but did Ryan O’Neal say this in the TV show Peyton Place to the trampy girl and later on to Redmond?

Keanu’s response is a mumble — so Keanu, right?

“Can I get it? I don’t have enough.”

Andrew is shocked. Yet his response to the request is to immediately start fanning a handful of one’s in front of Keanu’s face, “How much?”

Has he always waited for a moment like this, knowing his quick reply? Has he been to a strip club? Is that from a movie? Please be imitative behavior and not the fact you like making people feel small.

After Keanu squirms for a second more Andrew becames buddy-buddy again but now with power. He presses bills on Keanu reassuringly. Scratch Andrew McCarthy he’s 1980’s Alec Baldwin.

It is becoming increasingly more difficult to follow the conversation at my table and keep up on the action around me.

I can hear two boys behind us– I crane my neck and look into the sun haloing their encounter and burning my retinas.

I quickly go with an audio version. This situation is similar to the previous. Except the scene is played differently from the get go. The kid with money says, “I’ll pay for yours.”

“You don’t have to do that again.”

The other kid says nothing. Is he saying, case closed? It’s not a big deal? Think of it as a date! Whatever it was didn’t sound demeaning. It sounded rational. The boys moved on in conversation and when the time came he did pay for his friend.

I wondered if the camp had a scholarship program. There were at least two have-nots. In general it had to be costly to send your kid or maybe more than one kid to surf camp particularly one lead by a real Adrian Zmed type.

I started to feel like I was watching a 1980’s local public access production from Vermont — put together by parents worried about their more businesses minded children. Sudden thought– is that how Family Ties was conceived?

I briefly joined in the talk at my table about how many fries come in an order. They hand out freakishly large portions of superbly delicious fries. And, yes, the worst possible food to eat.

But that’s what the pagan god demands on solstice. My gratitude is rudely interrupted by a angry sounding girl at the table next to us, “You owe everyone at this table money!”

The four girls had veils of gold hair. It’s clear though who she’s calling out. The bullied girl’s head was hung.

Silence.

Her head still bowed, she offered, “I can have money next Monday or Tuesday.”

Who’s writing this truly painful but hackneyed dialogue?

There’s murmuring from the others to not worry about it at all. Then one of them said in just the best Bette Davis hiss, “Bethany!”

It was enough for the girl to raise her head again.

Postscript:

The popularity of the name Bethany peaked in 1996. It means daughter of the Lord.

 

Part 3: Are You Buying What Back-to-School is Selling?

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August 25, 2017— This is the conclusion of my conversation with Michelle S. Hite, Assistant Professor in the English Department at Spelman College on oppositional consciousness and parenting. (Originally published September, 2015)

Click links to read Part One and Part Two.

Kari: Do you believe there is a universal need to be accepted?

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Part 2: Are You Buying What Back-to-School is Selling?

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August 20, 2017: I am re-posting my conversations from two-years ago with Michelle S. Hite, friend and Assistant Professor in the English Department at Spelman College. It is back-to-school season and the topics we discussed are just as relevant, in fact they are timeless. This is the second of a three-part discussion. Click this link for Part 1 of our conversation.

Check out Macy’s back-to-school commercial. The soundtrack is Tears for Fears “Everyone Wants to Rule the World” with new lines including: “Everyone on their best behavior.”

Curt Smith, founder of Tears for Fears on the song: “The concept is quite serious – it’s about everybody wanting power, about warfare and the misery it causes.”

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