Tag: Down Syndrome Awareness Month

Ask All the Questions

jennyomoyersLeave a comment

“Does Moses have a brain?”

That was the question one of his classmates asked last fall during a lesson about the brain in the Counseling class I was teaching. They were learning about different parts of the brain and the jobs they do, focusing on the thinking, feeling, and doing parts of the brain.

Standing in front of the class, I could tell that many of the other students were surprised she had actually asked that question. Because not only was I the school counselor teaching the lesson, I was also Moses’ mom. I could tell that many of them were thinking, “Is she going to get mad/upset?”

I looked at her and gave her a little smile and said, “Yes. Moses had a brain. He’s a human and all humans have brains. I think you’re noticing that his brain works differently because he doesn’t talk and do some of the same things in the same way you do.”

Did it sting a little when she asked that question? Of course. But more than that, I felt grateful that she was trying to understand what was going on with this boy in her class who was clearly different from most of the other students. I was grateful for the authentic curiosity and willingness to try to understand as I did my best to explain that having Down syndrome caused the parts and connections in his brain to work a little differently. I told the class that it was kind of like the parts of his brain were trying to talk to each other, but they had a hard time hearing each other. So they had to repeat themselves and practice things more to make sure they were getting it right.

A couple of months after that question, I heard another one. This time from his younger cousin. I overheard her asking “Why doesn’t Moses talk?” Unfortunately, I was in another room and was busy with something so I wasn’t the one she was asking and I didn’t get to answer. I would have loved to tell her that his words don’t come out clearly because his brain works differently. But he “talks” in other ways, like how he taps her shoulder to get her attention and uses gestures with his hands to help her know what he’s trying to tell her or wants her to do. Or how he joins in on games and laughs along with his cousins as they play without needing to say a word. Or how he holds out his arms for a hug.

I love it when people ask questions about Moses. Especially kids. Questions reflect a desire to know him. To understand him. It’s not a bad thing to notice that he’s different or that things are different for him. That comes with him having an extra chromosome. Ignoring that fact or brushing it off can actually be a much more hurtful thing. Since having Moses, I have adopted the mindset that questions lead to knowledge, knowledge leads to understanding, understanding leads to acceptance, and acceptance leads to inclusion.

That’s what we want for Moses. For him to be accepted and included for who he is. If asking questions about him is going to lead to that, then ask all the questions!

Which leads me to two of my favorite questions that I’ve been asked in the last year:

“Where is Moses?”

“Can Moses come play?”

What questions do you have?

Early Education in Down Syndrome

jennyomoyers2 Comments

This week I got to Zoom with my 4th grade students during their Counseling time. It was so great to get to see their faces and hear their voices! We weren’t Zooming just so they could sing ‘Happy Birthday’ to me, though. We were Zooming so we could talk about Down syndrome.

October is Down Syndrome Awareness Month and it’s also the month my school district celebrates Disabilities Awareness Week. It’s one of my favorite weeks/months of the school year because I love getting to teach my kids that having a disability does not mean there is something wrong with a person. It means that there is something different with the way a person’s body or mind, or sometimes both, work. We learn about different types of disabilities while always keeping our focus on the fact that a person with a disability is a person that deserves to be treated with kindness and respect.

For each class I gave them a basic explanation of the chromosomes and the extra copy people with Down syndrome have, some of the differences that causes for their brain and body, and how much they are able to learn to do when given the chance. Then I asked if anyone had questions about Down syndrome.

The students in the class I Zoomed with on Tuesday morning were either still half asleep, bored to tears, and/or experts on Down syndrome already so none of them had questions.

By Tuesday afternoon, I was questioning whether or not it was worth doing the next two days. If the information I was sharing with them was appropriate and meaningful or just falling on deaf ears. If spending the time talking with them would even make a difference.

As I Zoomed with another class on Wednesday morning, I could tell the students were a little more engaged as I went over the same basic information. When I invited them to ask questions, hands quickly went up into the air.

“Is it similar to autism?”

“Can you catch Down syndrome from someone who has it?”

“Is it rare?”

“Can it be cured?”

It was awesome! I answered their questions the best I could and loved the effort they were giving in trying to understand Down syndrome.

Today’s session was good, too. One student asked if kids with Down syndrome behaved worse than other kids, and another asked if kids with Down syndrome could breathe okay.

It was yesterday’s session, though, that helped me to know that doing this wasn’t a waste of time.

Down syndrome isn’t rare. It’s the most common chromosomal condition that occurs in babies. About 1 in every 700 babies are born with Down syndrome. That number would be higher but unfortunately approximately 67% of women choose to terminate their pregnancy following a prenatal diagnosis.

There is no cure for Down syndrome. And as I told my students, I wouldn’t want there to be one. Because if Moses didn’t have that extra chromosome, he wouldn’t be Moses. Same goes for a lot of other awesome people with Down syndrome.

My hope is that one or more (or all) of those amazing young kids will grow up and make a difference in the life of someone with Down syndrome.

Maybe one of them will be a doctor who tells expectant mothers, “Your baby has Down syndrome. I know this news is unexpected and not necessarily what you wanted to hear, but I want you to know that there is no reason to believe that your child won’t lead a very fulfilling life.”

A nurse that says, “Congratulations! You baby is beautiful and perfect.”

A teacher who says, “Let’s see what works best for you so that you can learn as much as you can while you’re in my class.”

A policy maker that understands people with Down syndrome deserve fair access to things like life insurance and organ transplants.

An employer that welcomes people with Down syndrome to work at their business in a capacity that is appropriate for them. That provides the training and opportunity for them to be successful and contribute to the success of the business.

A friend who accepts a person with Down syndrome for who he or she is. Who isn’t nice because you’re supposed to be nice to people with disabilities but because she truly enjoys being around him.

A partner or spouse who resists the urge to bail upon hearing the diagnosis. Who chooses to stay and love and support the mother and child through all the ups and downs.

A mother who refuses to abort the life growing inside her. Who chooses to love her baby unconditionally regardless of the number of chromosomes it has. Who chooses to focus on all that her child will be able to do when the world wants to tell her all about what it won’t be able to do. 

In the world of Down syndrome, we are taught that early intervention is key for the successful development of our children.

I believe that early education is also essential for progress to continue to be made when it comes to the Down syndrome community. Talk to your kids. Teach them about Down syndrome and other disabilities so that when they find themselves around someone who has an extra chromosome, who might sound a little “funny” when he talks, who needs a little extra time to understand what she’s hearing, or whose brain or body works a little differently in other ways, they know what to do.

Be kind. 

Show respect. 

Choose love.

A Letter to Mrs. Cordelia

jennyomoyers1 Comment

In honor of Down Syndrome Awareness Month, I want to share about one of my special role-models, Mrs. Cordelia Conn, through a letter I’ve written countless times to her in my head: 

Dear Mrs. Cordelia,

You had no idea, but you were one of the early pioneers and advocates for people with Down syndrome and a personal role model for me. And you did it simply by being the best mom you could be to Patrick.

When I was younger, I always admired you. You had a confidence about you that even a young girl like me could pick up on. You had the sense of humor that was essential in being a mother of seven. There was a genuineness and openness about you that just felt safe. You told it like it was without a cloud of anger or judgment hanging over your statements. 

What I remember most, though, was how you were with Patrick. How you acted like he was a normal human being that belonged anywhere he wanted to be and especially belonged wherever you were – church, parties, Boomland, etc. You didn’t try to hide that he had Down syndrome, and you didn’t emphasize it, either. You made it clear that Patrick was not a person to be pitied or coddled. You had expectations of him and didn’t make excuses for him when he did or said something you didn’t approve of. Most importantly, you treated him with respect and love, and I saw that. 

Neither one of us knew it yet, but God did. He knew that I needed a role-model to look to when I had my own son with Down syndrome. He knew that I needed more than to just know Patrick and see all that he was able to do. He knew I needed to know you. To see you as a mom to Patrick so I would know what kind of mom I would want to be to my own son. 

When I got to sit down and talk with you last September, you told me that you didn’t know that Patrick had Down syndrome until you took him to your family doctor for his first round of routine immunizations when he was two-months-old or older. 

After I picked my jaw up off the floor, I asked you if you thought the doctors and nurses knew he had Down syndrome when he was born, and you said, “Supposedly they did, but they thought maybe I couldn’t handle it. Who knows what their feelings were?” When I asked if he was healthy as a baby, you again just said, “Supposedly.” To say I was shocked to hear these things is a gross understatement because in the world of information overload we live in today, the chances of a baby being born with Down syndrome and it not being communicated to the mother is virtually unfathomable. To not know if he or she had any medical conditions that would need additional medical attention or care. 

But that’s what makes you so incredible. I honestly don’t think it mattered that you didn’t know right away that Patrick had Down syndrome. Because Down syndrome or not, he was your baby and you were going to love and provide for him the best you could. 

You may have only met Moses a handful of times, but your impact on him is much more than the sum of your brief meetings. Because of you, he had a mom that was ready to accept, respect, see, and love him for the person he is and will become. 

As we talked, you were amazed that Moses has been receiving therapies since he was 6-weeks old. That he was about to start preschool and would be going to school just like any other child. Those things were not available for Patrick, but yet you still made sure that he wasn’t just tucked away and dismissed. You gave him the opportunities to grow. To be seen. To be known. 

Along with a journal and some of Patrick’s old books, you gave me an angel to take home to Moses. You told me to put it up so that he couldn’t reach it and so that it could watch over him. I’m thankful to know that he has another even better angel looking over him now. 

Thank you, Mrs. Cordelia. With my whole heart I thank you for being the mom you were to Patrick so I could be the mom I am to Moses. 

Love, 

Jenny (a.k.a. Moses’ mom)

In loving memory of Mrs. Cordelia Ann Rock Conn (1928 – 2019)