Month: March 2017

Posted on in caregiving, disabilities, family, life, parenting, special needs

Wanted: The perfect program for a highly social, deaf-blind, medically fragile, young woman.

Last week, I attended my daughter’s very last IEP meeting. Rhia turns 22 in May, which means she will no longer qualify for school based services. Instead, she will be a full fledged, 100% adult, with all the challenges and opportunities that provides. I sat beside her at the the meeting, surrounded by people who have been a part of her life since elementary school. Her current teacher used to be her aid in the 4th grade. Now he led the meeting that would transition her into adulthood.

Fighting back tears, I stated my concerns. Who will be her Sign Language interpreter? How will she continue to learn ASL? Which program will provide the most flexibility while still providing social opportunity so she can make friends? How will we fight the isolation that comes when a person is deaf-blind and uses a wheelchair to travel?

No one knew the answers. Everyone was worried and everyone tried hard to come up with solutions. But what I really wanted was someone to take charge with their magic wand and create the perfect program for my daughter. Unfortunately, no one had a wand.

It’s not that I didn’t know this day would come; her IEP team and I have been discussing it since the 8th grade. Transition is a big deal so it takes years to plan. The problem is that my daughter is medically fragile and has serious communication challenges. We live in a tiny town with limited opportunities. We really need to move to Berkeley or Santa Rosa, but who can afford the rent? So here we are, Smallville California, hoping the perfect program for my Disney loving, shy, cheerful daughter will appear.

Rhia keeps asking me what will happen when school ends. I tell her she’ll go into a different program for grown-ups. She’ll make new friends and maybe take classes at college again. She scrunches up her brows and looks at me sideways, not sure if I’m telling the truth. But I am; I’m telling her what I hope will happen. When I ask her what she wants she says she doesn’t know, but she’d like to move to “LA” so we can go to Disneyland everyday. Darling, if I could, I would, but I can only afford to live in a tiny town in NorCal where the adult programs are geared toward work and very few people know ASL.

I really need Godmother’s wand!

Posted on in acting, plays

Shhhh… speakeasy and I’ll tell you a secret

speakeasy

In the mood to time travel? I know a place, hidden away in a basement near China Town, where it’s always 1923. The stories are hot and the gin won’t make you go blind. But you have to know the password to go there.

the-speakeasy-sf

 

 

The Speakeasy is an immersive play where you can wander different environments (a saloon, a casino, a cabaret and three secret places) to watch several interweaving stories taking place amongst the staff of a 1920’s speakeasy. Pick a story and follow the characters from room to room, or stay in one environment and see all the characters wander through.

singer

I chose to mix it up, following a character for a while then exploring another room to pick up threads of different stories. I began with a mother and father hunting for the girl their son had loved; he had been killed during the Great War. Then I followed a man with a gambling problem into the casino and tried my own luck at craps. Turns out I’m pretty good. When a loud, obviously intoxicated woman dressed in  flapper attire yelled at the gambling man for abandoning his children, I followed her out the door and into the cabaret. Finding a seat near the stage, I watched the performances. They reminded me of something I’d seen in a 1930’s movie, complete with live music and dancers in red sequins tap dancing.

The-Speakeasy.-Freddie-Larson-as-Vinnie-3.-Photo-by-Peter-Liu

A big man who was obviously the boss and dressed like a wealthy gangster asked me if I was having a good time. Deciding to follow him for a bit, I listened in on a “private” conversation about “supplies.” I ended my evening back in the cabaret where I watched a love story unfold between one of the Speakeasy’s guards and a dancer. I can’t tell you the ending of the show, but lets just say it was surprising yet appropriate for Prohibition.

The-Speakeasy-2-photo-by-Peter-Liu-copy

I have a passion for the 1920’s and 30’s. The Speakeasy surpassed my expectations with the costuming, acting, decorations, and stories. I really felt that I was in a different time surrounded by real people, not actors. Even if you’re not a Deco/Flapper/Gatsby fan, you need to experience this theatrical event; there’s nothing like it.

little girl in bar

 

However, there are rules you need to follow if you decide to go. Wear appropriate clothing. You don’t have to go in costume, but you do need to dress up as if you’re going to a fancy cocktail party. No technology! They didn’t have cell phones in 1923. And be quiet, or if you must speak, speak softly. There’s a reason it’s called a speakeasy.

Click the link to buy your ticket and learn the secret password. I promise, you won’t be disappointed.

(images from The Speakeasy)

 

 

Posted on in art, creativity, holidays, religion, writers, writing

I’m giving up fear for Lent

theparisreview1
image from Tin House

Hidden away in a large plastic bin are years of my writing; poems, plays, short stories, articles, essays… even a finished book-length manuscript. Why are they stored in a bin and buried in my bedroom?

Because I am terrified of rejection.

I used to send my work out, but after twenty-five rejection letters I quit. I couldn’t take the disappointment and depression any more. Every rejection felt like a rejection of me, not my writing. I was the loser who poured her soul into every word only to have all that work stomped on by a heartless editor. My writing was worthless, therefore I was worthless.

My ego became intertwined with my writing. How can it not? Writing comes from the heart; it makes you vulnerable. You have to open a vein into your inner core and let the creativity pour out. No wonder every rejection letter felt like a rejection of my soul. I was just another girl who thought she could write like the millions of others who think they can write. I’m not special. I don’t matter and neither does my writing.

Vulnerability turned to depression and depression became fear. Never wanting to feel that much misery again, I put my writing in a plastic bin and shoved it behind my bed.

The other day, someone asked me what I was giving up for Lent. Not being a Christian, I just shrugged and said, “candy.” But what actually is Lent? And why should you give something up to celebrate?

According to The Upper Room, Lent is the season of the Christian year when Christians focus on simple living, fasting and prayer to grow closer to God. For 40 days, the length of time Jesus wandered in the desert alone, Christians let go of material things and focus on their spirit. For this ritual to work you have to give up something you really love, or are really attached to.

I am absolutely attached to fear. Perhaps this is a blasphemous way of observing a holy tradition, but as I said, I’m not Christian. However, I do believe ritual and symbols are important and that reconnecting to our sense of spirit is vital. Making a commitment to something greater than ourselves makes us better humans. Some people find that in religion. I find it in creativity.

For the next forty days I will submit my writing. Every day, I will send one piece of my work out into the world and will not think about whether or not it is accepted. Acceptance isn’t the goal, getting over fear is. And I will do this in the spirit of Lent. I am letting go of ego and sharing my work with anyone who may find it beneficial. I am strengthening my creativity and weakening the inner critic who tells me I’m worthless. And if I get 40 rejections, so be it. I’ll decoupage them and make a gorgeous collage.