Tag Archive: Down Syndrome

Life with a Down Syndrome Child

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.
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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.

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

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…

The Story of Fish Lips

bruce gerencser 1971

Bruce Gerencser, Ninth Grade, 1971-72

The year is 1972.

I am a ninth grader at Central Jr High 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 liked Mr. Limpet.

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

No post-9-11 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 32 years old now.

I have three children.

I am the pastor of a thriving Baptist Church.

My wife is pregnant with our fourth child.

Our 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 day our second daughter was born.

I had a mentally handicapped child.

All of a sudden I had flashback to 1972.

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

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

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.

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They Come From a Storybook

grimm characters

Bethany (my 25-year-old daughter with Down Syndrome) and I religiously watch the hit TV show Grimm.  Along with Captain America, Rascal Flatts, and Sleepy Hollow, Bethany loves Grimm. 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 is that she has a hard time distinguishing between fact and fiction. As we were watching Grimm last week, 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 in the week, 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 on this question before trying to defend the Bible as a historically accurate, factual book. 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 that lived and died in Palestine during the period recorded in the gospels, is there any evidence for a Jesus that was the miracle-working, divine, son of God?

Just because people say something is so doesn’t mean it is factual or true. An Evangelical preacher is simply following the path described by the detective. He is repeating a story that has been told over, and over, and over again. And as with the telephone game, the Jesus story of the 21st century is wildly different from the Jesus story of the first, second, twelfth, or fifteenth century.

Evangelicals embarrass themselves when they assert without knowledge that what they believe is exactly the same as what the early New Testament church believed. What is their evidence for this claim? Why the passed-down story of Jesus, passed down from Christian to Christian, sect to sect.

I am an avid reader of Smithsonian Magazine. Every month I learn something I didn’t know before. 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 1960’s. 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. Think on this for a moment.

The February 2015 edition of Smithsonian came a few days ago. In the Discussion section was 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.

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