Disabliities

October 27, 2021 admin No Comments

One Step Closer

Yesterday I received an email from Kaleidoscope magazine, asking me to videotape myself reading an excerpt from a short story they published for an event called Giving Tuesday!
I know what Giving Tuesday is, but never expected I’d be invited to help promote it! Look what they said!

I‘m laughing at how many times it took me to videotape myself reading!

Kaleidoscope is designating our Giving Tuesday fundraising efforts to support the works of writers and artists who express their voices through Kaleidoscope magazine. With your help, we will be able to continue to highlight the exceptional work of artists and writers, like yourself, through this groundbreaking publication. With your permission, we plan to promote your work on our social media platforms, website, and email communication leading up to, and during, the event to encourage giving.

What is most interesting to me, as a writer, is the mistakes I found as I read it aloud and I had to ask myself, why hadn’t I seen this before? The word “WORD” was repeated three times in the first paragraph! The other thing I found amusing is since I hired the editor, that scene completely disappeared with the revisions!

#writingcommunity #disabilities

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September 20, 2021 admin No Comments

The Journey Began Here

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Me when I was in First Grade


The television set was first introduced into homes in the ’50s. Every day, someone on our block was getting their brand new TV delivered. I can still see the delivery men carrying the monster box into our house and setting up the new black and white TV in our living room. Day after day we watched Mickey Mouse and the Mouseketeers at four o’clock in the afternoon. And that’s when I learned to harbor beliefs in the power of dreams …...

I blame Walt Disney. And my parents as well. I grew up thinking that if you wished upon a star, anything you dreamed would come true. My parents never set me straight, but they were probably dreaming their own dreams. They didn’t know how to talk to a child, so I grew up, naive, willing to believe in fairy tales, in a dreamy world of fantasy where nothing bad would ever happen to me. Ever…

Then in 1986, something bad happened. It wasn’t supposed to, but it did. The doctors told me my four-year-old daughter was profoundly retarded and

I finally stopped believing in fairy tales.

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July 23, 2021 No Comments

Dancing with the dangling threads of Denial

I got another story published today so it’s time to celebrate. The story is entitled “The Last Threads of Denial” but there are many invisible threads that still entangle me. I dance around around issues, unable or unwilling to face the truth; I worry whether my story told the whole truth or if I left something out. I write about motherhood, about life, about striving to be a good parent and worry. Mothers tell me they relate to my stories and nod their heads in understanding.

Meanwhile, my manuscript is out there, sitting in a pile with thousands of other manuscripts. Twelve small presses will either be saying yes or no to publishing my book, My recently deceased brother would have been proud of this perseverance. It’s hard to believe he died before our mother. That’s something I will continue to explore in my writing. His enthusiasm and encouragement echo in the silence. I don’t know if he fully understood my experience raising a child with an intellectual disability. His children were high achievers with exceptional abilities. But he read my manuscript and seemed to ‘get’ why I needed to persist. I hear the Beatles song, “Ob-La-Di, Ob-La-Da- …” The next line: life goes on.

Yes, life goes on and changes constantly. My hope is we should all whirl around and dance like Jessica, a girl who celebrates everything. A girl who doesn’t stay down for long. Here’s a photo of her dancing at Tim Tebow’s Night to Shine.

Let me dance with the dangling threads of denial.

Prom time!

The dance party, sponsored by the Tim Tebow Foundation, is better known as the “Night to Shine,” a prom night for people with special needs.

https://www.timtebowfoundation.org/ministries/night-to-shine

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January 16, 2019 No Comments

Victory!

In late October, or early November, after I came back from the Florida Writers Conference, I decided to use Submittable to send out a couple of my chapters as short stories. A couple of the entries were free, a few of them cost under $5. Altogether, I sent out twelve entries. People in my writing class said I probably would have every one of them rejected, so I shouldn’t get all excited. They said it was too early to do this, not ready, the work needed heavy-duty editing and blah-blah-blah.

Well, when I get excited about an idea, I usually jump on it before my enthusiasm deflates. Naively, I went ahead and jumped on the “I’m going to get published” bandwagon, even though I knew nothing about what I was doing! I received nine rejection notices before I realized my fellow writers were probably right. I decided to listen to their words of wisdom and allowed them to caution me. I needed to focus on learning to sharpen my skills. So I quit wasting time and stopped sending submissions that wouldn’t have a chance of being accepted. The next three submissions are “in progress” which means pretty soon I will be hearing from them with a great big “No thank you.” That’s why today was such a shock. I opened my email and saw the words, “Congratulations!” in the first line. Levitate, a magazine in Chicago emailed me to say they want to publish my story.

I don’t want to minimize the fact that they look like a small literary magazine, but they are in fact, very small. The fact is, they will be publishing what was a very rough draft of my first chapter as a non-fiction short story. The story is basically the first chapter of my book when Jessica moves into the group home and the flashback of the day we went to the Mailman Center and heard that archaic phrase “profoundly retarded.” So many emotions went into creating this chapter, and maybe, just maybe these editors saw something in my language that surpassed my tendency to use passive voice!

Then I read another article about the R-word (see below) and I am thrilled this has become such a hot topic. I see why I might actually have a chance with my memoir.

http://bloom-parentingkidswithdisabilities.blogspot.com/2019/01/retarded-imbecile-morons-why-does-new.html
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October 3, 2018 admin No Comments

Broken Brain

When the kids were little, we’d get questions about what was wrong with Jessica from Sarah and Alia’s friends. Maybe a lot of them didn’t have interactions with a mentally handicapped kid. At first glance, Jessica didn’t appear to have anything wrong with her. In fact,she was really cute. So were the other two. But whenever Jessica spoke, it was clear something was different.
So “what’s wrong with Jessica?” was a question my other two had to explain. It probably made them uneasy having to offer explanations and must have made them feel terribly uncomfortable. I would have felt that way. Maybe I should have taught them some snappy comeback, but I was also so unsure. The blind psychologist I was seeing told me they should answer “Jessica has a broken brain.” Easy explantation? It sounded that way. I have no idea how that may have sounded, but the blind doctor – whose name I won’t say  – gave this advice. She said I should treat Jessica the same way I treated the other two girls – have her participate in the same things -not to restrict her.
I didn’t do it that way. Not because I didn’t want to. It was because it wasn’t what Jessica wanted. Jessica didn’t ask to go with Sarah to her friend’s house or ask to join Brownies or go to Tae Kwon Do. If she wanted it, I would have taken her. I would have insisted on mainstreaming but she appeared to want to be with individuals who were just like her. I got in an argument with a professor at UM about mainstreaming. She had a disabled daughter and was a big proponent of mainstreaming. But each child is a special case, and wants different things – don’t they? I always honored that.
So it ‘s hard knowing if what I did or how I parented was the right way to do it. I wasn’t the one who grew up with a handicapped sister. And as for Sarah, Jessica was her twin. In my book, I have a chapter or two where I explore this and how it felt. We had to manage, we had to continue living our lives an doing the ususal stuff. But I am left a bit wistful, wishing it could’ve been easier for the other two.

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October 3, 2018 admin No Comments

“You Shouldn’t Have To Struggle!”

Rene, Jessica’s support coordinator was talking to me as I held the phone against my ear listening to his reassurances. I felt the tears welling up in my eyes. The crying was about to begin for the fifth time that day.
“I just want her to be okay and when I took her to my new dentist, she told me Jessica had three cavities and needs a deep cleaning. And she said I needed to take Jessica to a specialist! I thought I’d been taking care of her! I’d been taking her to my old dentist, and they never said anything like this. Then I find this out! ”
My first thought was I was the most awful mother in the world to have neglected her. I swallowed, choking back tears. Rene must have sensed I was about to cry, I was having a hard time talking.
“No, don’t worry, please Cathy. We’re here to help you. And remember if you ever have a problem, you can call us.”
Sniffing, I wiped my nose on the back of my hand. Jessica came into the living room and sat next to me.
“Don’t cry MuhMee, I okay. I fine. Don’t cry.”
Looking at her, with her crooked smile, I stared at the front tooth she chipped last year. My sweet thirty-five-year-old child was trying to reassure me. On the verge of another crying fit, she smiled again and said, “Don’t wuh wee.”
It made me laugh.
“Jessica, I’m just worried about taking care of you. ”
It turned out the specialist was someone all my friends had used for years! Years! Everyone in the special needs community knows who he is. Why hadn’t I ever asked anyone? This just gave me another reason to feel guilty and reminded me of the struggles I’ve had to deal with. I tried to tell myself it was okay, at least I found him. Actually, thank goodness I found him. When we got there, Jessica became really nervous. Then we met him. He kept telling Jessica, “you’re such a pretty girl.” He started talking to her, and they seemed to hit it off. Next thing you know, she was opening her mouth and letting him examine all of her teeth. It was like watching a movie and I was awestruck by what was happening. Pure magic.
In all the years I’ve taken her to the dentist, I’ve never once seen her willingly open her mouth. Before we go, I have to give her Xanax or Valium and even then she won’t open her mouth.  I think of Rene, telling me I  shouldn’t have to struggle and I’m grateful.
I expect I will post something about this amazing dentist when we go back. He was a miracle worker. He loved Jessica. I love him.0

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