Tag: Down Syndrome

Communication: More Than Just Talking

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“Mom, when is Moses going to start talking?”

That’s the question Josie asks me every so often.

My usual answer is, “When he’s ready.”

That answer does little to satisfy her. And I get it. She knows he’s 3-years-old. She knows that Moses’ best friend next door is three and has been talking up a storm for a while now. She sees videos of herself talking when she was younger than three. She also sees that physically, Moses is doing what most other three-year-olds are doing as far was walking, playing, eating, etc. So I get it that it’s hard for her to understand why Moses can do some of things that other kids his age are able to do but not others. Like talk.

To be fair to him, he does talk. I compare it to the babbling that babies do as a precursor to talking. And to be honest, it’s pretty freaking cute. Sometimes it’s just one or two sounds in response to something. Other times it’s a long-winded lecture about something that is not to his liking. My favorite is when he gets really excited and does this high-pitched cheer with a huge smile on his face.

He does know some actual words: Ma, Da, ball, Alexa, yes (with an emphasis on the ‘s’), and no.

But there are many more that he knows but isn’t able to pronounce accurately. For example, “de” is “thank you” and “come” is “welcome”. For the most part, when he says certain things I know what he’s saying. I know that when he says “ble” he wants a cutie, “Bo” is “Elmo”, “Ca” is “Cookie”, and “Gar” is “Oscar”. He also knows the signs for “more”, “please”, “thank you”, “milk”, and a few more.

His go-to form of communication is to either say “c’mere” or grab my hand and walk me to what he wants. If it’s something in a cabinet or the refrigerator, he’ll point to and guide me with “yes” and “no”.

Besides, he communicates in so many other ways.

Is it always easy? No. There are times when, despite both of our best efforts, I cannot figure out what he wants or is trying to tell me. There are times that I know he knows exactly what I’m telling him to do or not to do, like pick up the apple he threw down, and he openly defies me. There are times that I need him to understand what I’m telling him to do or not do, like go outside by himself, and I know he just doesn’t understand yet. There are tears and shouts of frustration for both of us at times.

But overall, I don’t consider his delay in speech to be a major issue.

Besides, he communicates in so many other ways that are even better than words.

Like the way his face lights up when he sees me walk in the door. The way he gets up, does his little preparatory dance, yells “Ma!”, and then runs to hug me. The way he giggles when I chase him around the kitchen. The way he watches and mimics Josie, especially when she’s dancing. The way his lower lip sticks out and he tucks his chin down when he gets hurt or sad. The way he pats my back as I hold him and hug him tight. The way he cuts his eyes to the side before he makes a break for it when I’m trying to get him dressed.

One of the most common questions I see posted from mothers who have just found out their baby will have or does have Down syndrome is, “What can I expect?” And I know from experience that what they’re really asking is, “What hardships or challenges can I expect?” It’s no secret that a person with Down syndrome will have physical and cognitive delays to some degree. However, what I feel like it is virtually impossible to help those new or expecting parents to realize is that those delays will actually serve to highlight strengths not only within their child but within themselves.

Josie started talking when she was a year old and hasn’t looked back. Knowing what she was thinking, needed, or wanted has never been hard to figure out. To be honest, I feel like we were quite spoiled in regards to the ease in which we were able to communicate with her early on.

However, with Moses, I feel like we have actually been given the gift of realizing that communication goes much deeper than words. With him, his communication might be more underdeveloped for his chronological age, but in that I find that it still has more of the simplicity, authenticity, and genuineness of that of a younger child. With him I don’t have to wonder if he truly means what he’s communicating because he is still so genuine in what he feels, needs, and wants. Sure, I may have to pay more attention to his nonverbal cues, but is that really such a bad thing? Especially if it means that I am more in tune with my child and it also helps me to be more in tune with others that I communicate with?

The next time you’re talking with someone, take the time to pay attention to how her eyes light up when she’s talking about something she’s passionate about. Or how his body language changes as he searches for the right words to explain what he’s thinking and feeling. Think about whether or not her facial expression and tone match up with the words she’s saying. Pay attention to these things within yourself, too. Are you fully communicating your honest thoughts and feelings?

Moses has taught me that when it comes down to it, while spoken words are important and meaningful, the true beauty of communication goes far beyond words. The beauty is found in the genuine and raw thought and emotion that children are so artful at showing. Adults are capable of showing the same thing but learn to mask it for a variety of reasons. Moses communicates in his way without malice, without ridicule, without hidden meaning or agenda. I never knew that my child with a speech delay would be teaching me lessons on communicating. But then again, I shouldn’t be that surprised. He is pretty extraordinary.

Letting Faith Be Bigger Than Fear

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When Josie was a newborn, every night that I would lay down to go to sleep after putting her down to sleep, I would immediately begin to panic. I can remember craving sleep so badly but being scared to go to sleep because I might not hear her if she needed me. That’s when I learned to turn my worries into a prayer. I would fall asleep while repeating “Worry about nothing, pray about everything…God, keep my baby safe” in my mind.

After a while, my fears began to lessen as I grew more confident in being a mom and Josie continued to grow bigger and stronger. When Moses came along, I had the familiar sense of panic set it at night during the first couple of weeks, but so did the familiar prayer.

For the past few days, I’ve been wearing a bracelet a former student gave me when Moses was about to have surgery to repair the hole in his heart. The bracelet simply says “Faith, Not Fear”.

That has been a struggle for me during the last couple of months.

I keep going back to a flippant comment I made back in early March when concern about this virus really began picking up. It was basically along the lines of “natural selection is still a thing and unfortunately some people are just going to be too weak to survive this”. Obviously, at the time I had no idea about the horrific, grim realities of this virus or that my son is included in the category of the weak. I also remember casually commenting that “ultimately God is in control despite our best efforts”. (I would seriously like to go back and slap myself across the face for being so nonchalant about it all.)

Because of Moses’ history with complications from RSV (aka “the common cold”), he is considered high risk. Also, there is some research coming out that the extra chromosome Moses has carries immune system genes that are overexpressed and may increase the chances that the virus will result in serious complications or death. So yeah, there’s that.

Earlier this week, he had a cardiology appointment to make sure the device that fixed the hole in his heart was still in place, not blocking any veins or arteries, and that there was no enlargement of his heart or increased pressure on his lungs. Thankfully, he got a glowing report from his echocardiogram and EKG.

So the good news is that his heart is healthy and strong.

When I talked to the cardiologist as well as the nurse practitioner from the Down syndrome clinic at Children’s Hospital, they both said that while it’s good news about his heart, there’s no way to predict how his body will respond when he is exposed to COVID-19. Their recommendation was to continue limited social contact and practice social distancing guidelines when we are around people.

As Tyson and I were talking about starting to see people again socially that evening, I could feel my heart beating faster. I can feel it now as I type just thinking about exposing Moses to the virus.

The thing is, the logical part of my brain (the “upstairs brain” as Dan Siegel would put it) knows that I can’t protect Moses from being exposed to COVID-19 any more than I can protect him from being exposed to the flu or RSV without completely isolating ourselves from the world. That’s just not possible for so many reasons, but one of the main ones is that it’s not fair to Josie. She’s a people person. She misses her friends. She misses her grandparents. She misses her cousins. She needs social interaction.

I also know that we simply don’t know how Moses will respond to COVID-19. He could be asymptomatic. He could have mild-to-moderate symptoms. He could require hospitalization. He could require ventilation. He could recover. He could not.

This is when the logical part of my brain is overtaken by the emotional part. The “downstairs brain”. The part that drowns out “Worry about nothing, pray about everything”.

Did you know that when a person is on a ventilator, the monitor that it’s hooked up to shows how much work the patient is doing as far as breathing? I didn’t know that until about 3 days after Moses had been on the ventilator. I noticed that the second wave form had two colors instead of just one. I want to say that it had been solid red, but then I noticed a little purple at the bottom of the wave. (I could be wrong about the colors, but it’s really beside the point.) The point is, I had been staring at that monitor, watching the waves, watching his heart rate, oxygen saturation level, and blood pressure numbers for 3 days, and I didn’t know that the middle wave, the red one, was showing that the machine was doing all the work for Moses. He was not doing any work to breathe. The ventilator was doing it all for him.

For three days.

Did you know that being on a ventilator means that you are on life support? I didn’t know that until about 3 months after Moses had been home and a friend mentioned how scary it must have been for him to be on life support. I remember shaking my head and telling her he hadn’t been on life support, just a ventilator. She gently told me that being on a ventilator was life support. When I looked it up later and saw that she was right, I was horrified.

Did you know that my worst fear is that I would have to watch my sweet boy be on life support again? To stare at the monitor and will him to do some of the work to breathe. To know that if he wasn’t on that ventilator, his body would grow too tired and too weak and his organs would begin shutting down.

Did you know that my absolute worst fear is that this time I wouldn’t get to bring him home?

To even think about it makes me want to hole up in my house with just the four of us until there is a vaccine and/or a proven, effective treatment for this stupid virus.

But I know that’s not healthy or fair for us. Even Moses. He needs more social interaction just as much as Josie does. Even staying home doesn’t guarantee he won’t somehow get it.

In short, I am not in control here. And that scares the shit out of me, more now than ever.

Trust me, I’ve been praying.

Every day.

For the health and safety of my whole family.

I’m doing my best to turn my worries into prayers and then trusting that God will hear and answer them the way I want him to.

A few weeks ago, I read an editorial by Bishop Edward Rice in which he reminds us that “faith is easy when everything is going well” and that some people think “…if I believe, then nothing bad should ever happen to me”. I agree with the first statement, and I know the second statement is not true. I also know that just because bad things do happen, it doesn’t mean that God has left me. It’s then that He’s with me the most. That He’s going to help me through the trials, heartbreak, and pain that come with life. That He’s going to hold me when I’m worn down and need to rest. And that He’ll give me the strength to keep moving forward.

As hard as it might be, I know it’s time to live by the words “Faith, Not Fear”. It’s time open our doors and begin to venture back out into the world. I’m not saying I’m ready to throw caution to the wind, start shouting “QUE SERA, SERA!”, and go hit up the next massive pool party. But I am ready to let my faith be bigger than my fears. To know and to trust that whatever God’s will is, whatever He has planned for Moses, Josie, Tyson, and me, He is in control and will be with us the whole time.

Fear can be paralyzing. Especially when the thing you fear is something you’ve experienced before. Faith is what allows you to be able to move again. It’s not always easy for us humans to let our faith be bigger than our fear, but thankfully we have a patient, understanding God who is always with us to help us get moving again.

Trust God…But Don’t Stand Up in a Small Boat

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Here in our little corner of Southeast Missouri, things are going to start returning to a new version of “normal” tomorrow.

The way I understand it, the guidelines set forth by the Stay at Home Order will be lifted to a certain extent. Businesses are expected to follow certain guidelines to ensure the healthy and safety of their customers and employees. However, there is no restriction on the size of social gatherings although the 6-foot social distancing practice is still being encouraged.

For small business owners, I’m happy for them. Especially the ones that have been completely closed for the past four weeks.

For those who have felt any personal strain of the Stay at Home Order, I’m hopeful they will find some relief, too.

As for me, my anxiety is back and I am dreading May 4th.

Believe me when I say I am ready to be able to see and hug my parents. To have a glass of wine (or three) with my friends in person. To go to the grocery store without wearing a mask or fearing I’m going to infect my family despite my best efforts to sanitize everything before it goes into the house.

Today I have cried as I’ve grieved not getting to hug my parents when they came to visit us through the window and bring the kids cookies.

I’ve cried because I’m scared this virus is going to come back if businesses don’t adhere to the guidelines for keeping their customers and employees safe. If people don’t continue to practice social distancing as they are being encouraged to do.

I’ve cried because I miss my family. I miss my friends. I miss my students. I miss my work family.

But I also know that for my family, we have to continue staying home. We have to continue doing everything we can to stay healthy.

As I wrote before, Moses is considered high-risk not so much because he has Down syndrome but because of his history of respiratory complications. If RSV, a common cold for most people, could put him in the hospital requiring oxygen less than 5 months ago, I don’t want to know what COVID-19 could do to him. But I do know that I never want to have to relive watching him be kept alive by a ventilator, which is what I had to do for 6 excruciating days when he was just 3 months old. And which is what could very well be what would have to happen again if he had complications from COVID-19. Trust me when I say that if you’ve never sat by the hospital bed where someone you loved more than life itself was laying, watched the monitor, and prayed that their oxygen level stayed above 90 so that the alarm wouldn’t go off again, it’s not something you ever want to do.

It’s not just Moses that I want to keep safe, though. Over the last month, I’ve read stories about seemingly healthy children and adults in their 20s, 30s, and 40s who have fallen victim to this relentless and unforgiving virus. So while Josie, Tyson, and I are not considered to be in the “at-risk” population, it doesn’t magically grant us immunity from the virus and it’s possible ramifications.

There’s a sign in my in-law’s cabin at the lake that says “Trust God but don’t stand up in a small boat.” I fully trust that God is watching over my family and hears my prayers to continue letting us stay healthy. But when tomorrow comes and others open their doors and go back to “normal”, we’re going to go ahead and sit tight at home a little while longer.

Living with Healthy Fear

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When Moses was 3-months-old and on a ventilator because of complications from RSV, a common cold to most people, I remember one of the nurses in the PICU telling me, “We have a healthy fear of RSV.” He said that even though they knew how RSV progresses and what it can do to a person’s body, they also know that they have to be diligent while taking care of a patient in Moses’ situation because things can go from bad to really bad very quickly. Case in point: The first time Tyson and I went to the cafeteria together to get lunch, leaving Moses alone in his hospital room for the first time since being admitted, the alarms in his room went off to signal that the thick mucus was clogging up the ventilator tube. When we got back upstairs, the nurse explained that they had to suction his tube out pretty forcefully so that the oxygen could flow through the tube. This happened a couple more times while Moses was on the ventilator. Hence the need for that healthy fear.

When we started to learn of the coronavirus and how it affects the respiratory system, Tyson and I immediately started thinking about how to keep Moses safe. Yes, for the most part, COVID-19 does not affect children as severely as older people. However, from recent reports, it can and has seriously affected children. Because of Moses’ history of having respiratory complications from RSV, he is considered to be ‘high risk’ for COVID-19.

So while we have been practicing social distancing for the past two weeks, I have felt fairly confident that we’re keeping him safe. Of course, there is a part of me that understands that I am not in control of the spread of this virus. None of us are. Despite our best efforts, he could still get it. Because of his age, he could get over it with little to no complications. I’ve read accounts from parents that their children with Down syndrome have gotten COVID-19 and recovered fully from it.

He could develop severe respiratory complications. He could require a ventilator again to save his life again.

And because he has Down syndrome he could be denied that life-saving intervention.

Two states – Washington and Alabama – have already released medical guidelines that more or less outline who gets priority when it comes to being put on a ventilator. Individuals with intellectual disabilities are included in the group that is not given high priority.

To some in the medical field, Moses’ life is viewed as less valuable than a three-year-old with typical intellectual abilities.

I am not okay with that.

I’m not saying that Moses’ life is more valuable than any other three-year-old’s. I am saying that his life is just as valuable as any other person’s on this planet.

In three short years, Moses has impacted so many lives in ways that I may never even know about. But I do know how much awareness and understanding he has brought to our family and friends about Down syndrome and respecting the dignity of his existence. I know how much happiness and laughter he spreads with his wicked sense of humor and his amazing hugs. I know that he has taught me to slow down and remember to find the joy in life’s simple moments and to not let society dictate what is important in my life.

But because he naturally has a shorter life expectancy (60 years) and is prone to have more medical issues, he’s low priority. That means that if the resources were available, he would likely be denied access to them. Because somehow those experts in the medical field are also experts in predicting the impact of a person’s life based on a diagnosis of, oh, let’s say Down syndrome.

I am not okay with it being decided beforehand that people with Down syndrome or any other type of physical or intellectual disability could be denied life-saving measures in the event they develop respiratory complications from COVID-19. I understand that hard decisions have to be made in these uncertain times. However, I don’t believe that when it comes to medical care, especially involving life-saving measures, those decisions should be made without input from the patient or the patient’s family. As his parents, Tyson and I have the right to be part of the decision of whether or not to put him on a ventilator if that resource was available.

When the Declaration of Independence was written, it included this little piece:

“…that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”

Declaration of Independence: A Translation. National Archives.

Notice that it doesn’t say “except for…”

Also, the Americans with Disabilities Act states:

“The Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act require that health care providers provide individuals with disabilities full and equal access to their health care services and facilities.  Title II of the ADA applies to public hospitals, clinics and health care services operated by state and local governments and Title III of the ADA applies to privately-owned and operated hospitals, clinics and health care providers.

Accessible Health Care. ADA National Network

It saddens and angers me that when I pray for Moses during this time, I not only pray that he stays healthy, but I also have to pray that if he does get this virus, that he will receive the necessary care and resources to restore him to health. That the doctors and nurses at the hospital will see the value in his life without me having to fight to convince them of that. That the principles and laws of our nation will be upheld.

Are my son’s medical rights protected?

Theoretically, yes.

In reality? Let’s just say I have a healthy fear of those people who are making decisions about who gets priority when it comes to saving lives.

Falling Through the Ice

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I’ve been trying to figure out how to describe what the last two days have felt like. As I was putting things away, it finally came to me.

For me, going through life is like walking on a frozen lake. There are times when the ice is thick and solid, and I can walk with confidence. Then that step comes and you hear the crack. Sometimes it’s so soft it’s barely noticeable and it creates the smallest of lines. Other times it is thunderously loud and the break in the ice comes quickly and forcefully.

Over the years, there have been times that the ice breaks enough that my foot goes through and into the icy water. There have been times where I’m able to step over the crack and find my way back to solid ice with reasonable ease. Sometimes, the crack is so small I forget about it with the next step.

Yesterday felt like the ice under my feet simply disappeared and I was plunged into the freezing water.

Dr. Brené Brown, a research professor at the University of Houston, has an amazing video in which she illustrates the difference between empathy and sympathy. (If you haven’t seen it, you can watch it here.) In it, she describes how many times people who are showing sympathy draw a nice silver line around another person’s problem or emotion. I think people try to put the silver lining around a person’s problems and emotions for a variety of reasons: they want to “fix” it; they are uncomfortable with the strong emotion of the other person; they don’t understand the intensity of the level of the feeling for the person; or maybe for them, the same situation wouldn’t result in the same feelings or response and so they don’t understand why it’s happening for this other person.

I think that some people accept silver linings because it’s easier than to stay with the current feeling. Or maybe the person having the strong, hard feeling can tell that the other person is uncomfortable with how she’s feeling and wants to help that person feel better. Or maybe it’s because he’s just not ready to deal with the situation or feeling. And sometimes the silver lining puts things in a different perspective for the person and she is ready and able to move on.

I can be a master silver-liner. In most situations, I can find the bright side and do my best to convince the other person to see the pretty silver light. In fact, I do it to myself all the time.

Worn out after a hard day at work? At least I have a job.

Frustrated at the sight of a dirty house that was literally clean five minutes ago? At least I have a house.

Another medical bill in the mail? At least you are able to access healthcare.

Tired of listening to Josie get anxious when she doesn’t have her note saying that I’m going to pick her up at the same time as I always do? At least she is using her words to express her feelings.

Annoyed at the extra time it takes to put Moses’ socks, braces, and shoes on? At least he can walk.

For any hard situation I may be going through, there is always someone who seems to be going through something harder. But does that mean that my situation magically ceases to be hard? Does it become less important?

Many times, it seems that the answer is “yes”. Get over yourself and your “hardship” and be grateful for what you have. Or at least leave it at the door when you leave your home.

Like in Dr. Brown’s video, I feel like the ice I was standing on – ice that I thought was solid – wasn’t so solid after all. As I kept marching forward on my path, my foot hit a weak spot and I fell through. When I hit the water, many of those hard situations and feelings that I thought I had perfectly silver lined were there waiting for me. I’m pretty sure they are what weakened the ice below me in the first place.

I have been silver lining things in my relationships.

I have been silver lining things in my family.

I have been silver lining things in my job.

I have been silver lining things about myself.

Instead of allowing myself to feel the sadness, disappointment, frustration, annoyance, irritation, hurt, etc., I’ve silver lined it, pushed it down, and went on my way. Sometimes the silver lining works, sometimes it doesn’t. When it doesn’t, that feeling lies dormant until the ice cracks and allows it to come to the surface once more.

I took another mental health day today. I felt better than I did yesterday, but I knew that I wasn’t on solid ice just yet. As I was cleaning off my dresser this afternoon, I finally pulled out a bag that has been hiding underneath it for a little over three years.

It’s a bag that I received from the Down Syndrome Association of Greater St. Louis shortly after Moses was born. In it were resources that gave information about Down syndrome, tips for raising a child with Down syndrome, brochures for agencies that provide assistance for kids with Down syndrome, and a couple of books about having a child with Down syndrome.

As I went through the contents, I broke down. Much like I did when I looked at Moses’ first goal report for his IEP.

For three years, I’ve worked really hard at drawing that silver line around the challenges that come with a child with Down syndrome.

He has Down syndrome? At least he’s healthy.

He spent 6 days on a ventilator because of RSV? At least it wasn’t 7 days of watching a machine keep him alive.

He has an ASD in his heart? At least it was able to be repaired by a cardiac catheterization instead of open heart surgery.

He can only recognize and match 10 pictures? At least it’s more than none.

I am fully aware that Moses is doing more physically and cognitively than a lot of other three-year-old kids with Down syndrome. But it’s still hard to see his limitations, especially when it’s in black and white.

As I read through his goals, I was disappointed. I tried to silver line my disappointment with At least he’s making progress.

This place where I’m at is nobody’s fault and it’s not because of one certain thing. It’s a culmination of silver lining my feelings and situations, not taking care of myself consistently, and trying to keep up my facade of strength.

I don’t think that humans were designed to be dismissive of their situations or feelings. I don’t think that humans were designed to be physically or mentally strong all of the time. I think that we were designed to experience life, feel the feelings, rest when we feel weak, and hold others up when we feel strong. And when we find ourselves in that icy water, we can be at peace knowing that God doesn’t want us to stay there and He will help us find our way back to the solid ice.