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Tag: Down Syndrome

Short Stories: The Story of Fish Lips

Bruce Gerencser 11 Comments
Bruce Gerencser, Ninth Grade 1971-72
Bruce Gerencser, Ninth Grade 1971-72

The year is 1972.

I am a ninth-grader at Central Junior High School in Findlay, Ohio.

I am a typical boy.

The need to prove I am “one of the guys” is important to me.

I want to fit in.

I want to be part of the club.

The “retards” have a classroom in our building.

You know who they are.

The freaks.

The morons.

The half-wits.

A wonderful opportunity to prove that I belong.

Fish Lips.

That’s what we called him.

He had big lips like Mr. Limpet.

Every day he wore a tin sheriff’s badge and carried a toy gun.

No post-nine-eleven worries in 1972.

Why do the retard’s parents send him to school like that?

Don’t they know boys like me lurk in the hallways looking for opportunities to mock and harass their son?

And so I did.

I mocked him and made life miserable for Fish Lips.

So did other boys, but I am the boy I remember.

I was part of the group now.

I hope Fish Lips didn’t mind being the price of admission.

It is 1989.

I am thirty-two years old now.

I have three children.

I am the pastor of a thriving Independent Fundamentalist Baptist (IFB) church.

My wife is pregnant with our fourth child.

Our beautiful red-headed daughter was born on September 1st.

Our first girl.

We are so excited to finally have a girl.

It was not long before we realized something wasn’t quite right with our daughter.

The doctor sent us to University Hospital in Columbus.

A genetic test . . .

We didn’t need the results.

We already knew . . .

Our daughter had Down syndrome.

Her features were mild and the doctor missed all the signs.

We found out she had Down’s the same day our second daughter was born.

I had a developmentally disabled child.

All of a sudden I had a flashback to 1972.

Visions of a hateful boy persecuting the mentally handicapped, all because the boy wanted to belong.

I thought of what I would do to that boy today if he did today what he did then to my daughter.

I wept.

I couldn’t undo what I did.

But I could make sure I am never that boy again.

The least of these deserve my protection and care.

They deserve to be who they are without worrying about a boy with something to prove.

I am glad that boy died in 1989.

Bruce Gerencser, 67, lives in rural Northwest Ohio with his wife of 46 years. He and his wife have six grown children and sixteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.

Your comments are welcome and appreciated. All first-time comments are moderated. Please read the commenting rules before commenting.

You can email Bruce via the Contact Form.

They Come From a Storybook

Bruce Gerencser 9 Comments
grimm characters

Bethany (my 32-year-old daughter with Down Syndrome) and I used to religiously watch the hit TV show Grimm. She continues to watch reruns of the show over and over on Netflix and Amazon Prime.  She is quite intense when she watches the show and can easily recite to anyone who asks (or doesn’t ask) the Grimm storyline, complete with character descriptions.

One of the problems Bethany has watching TV is that she has a hard time distinguishing between fact and fiction. As we were watching Grimm, Bethany asked, they are all real, right? I snickered a bit, and then told her, no, they are not real. They come from a storybook.

Later, I was watching a crime procedural show and one of the characters explained how it is possible for a large number of people to testify to a certain event happening. The detective said:

People make things up and it is told over and over. Eventually it becomes common knowledge.

And then I thought to myself: just like the stories in the Bible.

I can just imagine an Evangelical preacher reading this post and doing this while screaming:

jumping man

THE BIBLE IS DIFFERENT!!! In what way is the Bible different? Think about this question a bit before trying to defend the Bible as a historically accurate, factual book (let alone inerrant and infallible). Do we have any more evidence for the Jesus of the Bible than we do the fictional creatures in Grimm? While there may have been a man named Jesus who lived and died in Palestine, is there any evidence for a Jesus who was the miracle-working, divine, son of God?

Just because people say something is so doesn’t mean it is factual or true. Evangelical preachers follow the path described above by the detective. They repeat stories that have been told over, and over, and over again — rarely asking, “is this true?” As with the end result of the telephone game, the Jesus story of the twenty-first century is wildly different from the Jesus story of the first, second, twelfth, or fifteenth century.

Evangelicals embarrass themselves when they assert that what they believe is exactly the same as what the first-century church believed. What is their evidence for this claim? Why, the passed-down stories about Jesus, passed down from Christian to Christian, sect to sect, for the past two-thousand years.

I am an occasional reader of Smithsonian Magazine. In the January 2015 issue, I learned from an article about Martin Luther King, Jr. that “King and his demonstrators were driven out of Selma by the police on “Bloody Sunday.” I also learned that the Watt Riots took place in 1967.

Imagine for a moment that I am telling my children about my life growing up in the 1960s. Imagine me saying to them, I remember seeing the Watts Riots on TV in 1967. My children would accept this as a fact because they know I was born in 1957, so I was alive during the race riots of the 1960s. Perhaps they would pass this on to their children, a story of how life was when Gramps was a kid.

The February 2015 edition of Smithsonian came out with a correction. King was not in Selma on Bloody Sunday. He arrive two days later. The Watts Riots? They took place in 1965, not 1967.

Now ponder how the stories of the Bible came into being and why people repeat them and believe them today. It’s really that simple.

Bruce Gerencser, 67, lives in rural Northwest Ohio with his wife of 46 years. He and his wife have six grown children and sixteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.

Your comments are welcome and appreciated. All first-time comments are moderated. Please read the commenting rules before commenting.

You can email Bruce via the Contact Form.

Asking Permission to Touch Others

Bruce Gerencser 4 Comments

dont touch me

During the month of December, I usually wear my Santa hat in public. This leads to a lot of attention and fun, especially the closer we get to Christmas.

Two weeks ago, I shot the Fairview vs. Fayette boys high school basketball game. I usually position myself underneath one of the goals. For home games, there are stands on one end, so I am able to sit while shooting the game. This is much easier on me physically.

During the game, a woman came up to me and said, “Hey, a girl over there is trying to get your attention.” I thanked her. Looking at the far end of the ends of the stands, I noticed a young woman with down syndrome wildly waving her hands and arms at me, trying to get “Santa’s” attention. I waved back at her, and she was quite excited over Santa’s response. We traded waves and “I love you” hand signs the rest of the game. Afterward, I walked over to where she was standing. She was thrilled that Santa was speaking to her, so much so that my presence rendered her speechless. I said to her, “Would it be okay if I gave you a hug?” I thought, “surely, she would want a hug from Santa.” Instead, my request freaked her out. She quickly retreated to the safety of her caretaker. I told her, “that’s okay, you don’t have to hug me.” My daughter Bethany, who also has down syndrome, was standing next to me. Bethany said to the girl, “I will give you a hug.” The girl was fine with that, so she and Bethany hugged and that was that.

This reminded me that it is always best to ask someone first before hugging or touching them. Personal space should always be respected. Several years ago, I was shooting a game at the same gym. A young mother came up to talk to me about taking photographs of her son. He played on the basketball team. As we sat there talking, she placed her hand on my leg. I don’t think she meant anything by it — I am old enough to be her father/grandfather. That said, I was quite uncomfortable the whole time we were talking. Of course, I spun a completely different story to Polly. “Hey, this hot woman was hitting on me. She put her hand on my leg!” Polly wasn’t buying it . . . Ah, the fantasies of old men.

Let this post be a reminder that we should always ask permission before touching others, particularly people we don’t know.

About Bruce Gerencser

Bruce Gerencser, 62, lives in rural Northwest Ohio with his wife of 41 years. He and his wife have six grown children and twelve grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist. For more information about Bruce, please read the About page.

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Thank you for reading this post. Please share your thoughts in the comment section. If you are a first-time commenter, please read the commenting policy before wowing readers with your words. All first-time comments are moderated. If you would like to contact Bruce directly, please use the contact form to do so.

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Life with a Down Syndrome Child

Bruce Gerencser 5 Comments

bethany 2019
Bethany, July 2019

Several days ago, Polly and I, along with our 30-year-old daughter Bethany, were slowly traversing the aisles at the Defiance Meijer. As we walked down one aisle, a woman in her early 30s hesitantly said to us, “I don’t want to offend you. Do you mind if I ask you a few questions?” I said, “sure,” not knowing exactly what the woman wanted to ask. She replied, “I have a year-old daughter with Down syndrome. I see you have a child with it, and I have some questions.”

This is not the first time someone has stopped us in a store to ask us questions about Bethany. We have never thought such inquiries to be intrusive. We vividly remember when Bethany was a toddler and all the questions we had about Down syndrome. This was before the Internet/Netscape/AOL/Google, so information was hard to come by. We, of course, asked our primary care doctor, Bill Fiorini, a lot of questions, and availed ourselves to whatever books on Down syndrome were available from the local public library. Over the years, we have continued to educate ourselves about Down syndrome.

The woman proudly showed us a picture of her beautiful redhead girl. She asked, “how old was your daughter before she walked?” Polly replied, “seventeen months.” The woman said, ” I am in several Down syndrome support groups, and several people told me that I shouldn’t expect my daughter to walk until she was seven or eight.” I could see the pain in this mother’s eyes, pondering what the future might hold for both her and her daughter. I proceeded to tell her what I have told numerous questioning parents about living with a Down syndrome child:

  • Children who have Down syndrome vary greatly one from the other. On a scale of 1-10, one being the Downs children you see on TV who can read and write, drive cars, and marry, and ten being the children who are so severely disabled that they require fulltime institutional care; every child is different.  Be honest about where your child falls on this scale.
  • Support groups and the opinions of friends and relatives are often unhelpful and can be harmful. Listen to what medical professionals tell you, and follow the course of treatment prescribed by them.
  • Educate yourself about Down syndrome. Sometimes, medical professionals and social workers can suggest or demand things that are not in the best interest of your child. Bethany was born in the 1980s in rural Perry County — one of the poorest areas in Ohio. At the time, children with developmental disabilities were warehoused at a “special” school. Polly and I took one look at what was going on at the school and said, “our child will NEVER go to this school!” I told the social worker, “all I see is retarded children learning to be more retarded.” Harsh? Sure, but that’s what I saw at the time. (I never considered that they might have been doing the best they could with limited financial resources.) Every child with Down syndrome was running around slobbering with their tongues hanging out. Whatever our motivations might have been at the time, we wanted a better life for our daughter.
  • Push your child. If you have older children, get them involved in helping your child grow physically and mentally. Having three older and two younger siblings really helped our daughter. We will forever be grateful for their help and support.
  • Don’t baby your child. There’s a tendency to coddle a child with Down syndrome. You don’t want to see her hurt, so you become an overly protective parent. Doing so actually impedes the child’s developmental advancement. When Bethany was born, doctors missed the fact that she had Down syndrome. Her features are quite mild. Bethany was two years old before we learned through genetic testing at Ohio State University that she had Down syndrome. Bethany benefitted from this lapse in diagnosis. Her parents and siblings treated her as they would any other child. It wasn’t until she was sixteen months old that we began to wonder if something was “wrong” with her.

gerencser-children
Our three youngest children, late 1980s. As you can see our youngest daughter is as tall as Bethany. Many people thought they were twins. It didn’t help matters that they both had red hair, and we often clothed them with matching dresses.

The woman asked us if Bethany had any health problems. We told her yes, and then recited the list of health problems she has had over the years. I reminded the woman that health ailments vary from child to child. Bethany has few health problems when compared to other people with Down syndrome: heart murmur, hyperthyroidism, an obsession with Rascal Flatts and vampires. Bethany has had surgery several times, including the removal of cataracts from both eyes. We went on to tell the woman all the things Bethany learned to do. Yes, later than when children typically learn things such as riding a bike, BUT she did successfully learn to do many of skills children typically conquer. It was an exciting day at the Gerencser home when Bethany — at age ten — finally learned to ride her bike without training wheels.

We could see the young woman’s demeanor lighten as she talked with us. We were glad that we could be of some help to her. Before we walked away, the woman shared a story about running into a “friend” at Walmart. The friend looked at her daughter and said, “you know, you can get an abortion for that now.” I thought, “OMG, I would have eviscerated her “friend” for daring to utter such stupidity.” Yes, many women have abortions once they find out that their child has the chromosome 21 abnormality. I would never fault them for having an abortion. I know that no test can show a woman to what degree her fetus will be affected by Down syndrome. Many women don’t want to take the risk of having a child who is severely disabled. That said, this woman’s child is already born. A real friend would support her and ask if there was anything she could do to help.

About Bruce Gerencser

Bruce Gerencser, 62, lives in rural Northwest Ohio with his wife of 41 years. He and his wife have six grown children and twelve grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist. For more information about Bruce, please read the About page.

Are you on Social Media? Follow Bruce on Facebook and Twitter.

Thank you for reading this post. Please share your thoughts in the comment section. If you are a first-time commenter, please read the commenting policy before wowing readers with your words. All first-time comments are moderated. If you would like to contact Bruce directly, please use the contact form to do so.

Donations are always appreciated. Donations on a monthly basis can be made through Patreon. One-time donations can be made through PayPal.

Pertti Kurikan Nimipaivat: A Punk Band Made up of Men with Down Syndrome

Bruce Gerencser 4 Comments

Recently, Kevin sent me a link to a story about a Finnish band, Pertti Kurikan Nimipaivat (PKN) . What makes this band unique is that all the musicians have Down Syndrome. As a parent of a 25-year-old with Down Syndrome, I know how tuned in to music a Down’s child can be. Bethany loves music, knows the titles and lyrics to countless songs, and even sings along with the videos she watches. Sadly, her singing voice is not very good, but that does not keep her from singing along with Rascal Flatts or whoever her favorite band that week is.

Here’s a video of Pertti Kurikan Nimipaivat. It is not in English, but I thought readers would enjoy it anyway.

Video Link

The Independent reports:

A Finnish punk band whose members have learning disabilities are applying to perform at the Eurovision Song Contest in a bid to raise awareness of Down’s Syndrome.

PKN (Pertti Kurikan Nimipaivat), whose members are living with Down’s syndrome and autism, will compete against 17 other bands to represent Finland at the annual event, to be held this year in Vienna.

Finnish TV viewers will make the decision but PKN are already excited about the process and hoping they will make it to the grand final stage.

“Pertti the guitarist is a big fan of Eurovision,” manager Kalle Pajamaa told Sputnik. “Their families are supportive as well as the fans. Even the punk scene has been very supportive for the guys.”

Pertii Kurikka, Sami Helle, Kari Aalto and Toni Valitalo believe that appearing at Eurovision could help boost support for social programs helping inform more people about Down’s Syndrome…