Thursday, April 23, 2020

How Life Has Somewhat Prepared Me for This

We are finishing up our 5th week of home isolation due to stay at home orders from COVID-19. Like millions of other people, nothing about my daily life looks like it did prior to this. Still, there are aspects of it that I can relate to from previous experiences.

Having a child with special and medical needs, I have endured situations that most people have not. My daughter has a list of diagnoses that have resulted in several surgeries and over thirty hospital admissions of varying lengths.

Today, I'll share three aspects of this crisis that I have been somewhat prepared for because of my life with my daughter.

1. Going Without Pay
Presently, my husband and I are both home and not working. (I'm working about 3 hours a week from home. Does that even count?) This is definitely an odd situation when neither of us have our regular income, but we've lived through other financial woes.

In the course of our 17 year marriage, we have had plenty of months when my husband was unemployed due to the nature of his job being seasonal. There have been a couple of times when I've went months without pay during a state budget crisis. We both have jobs in which there is no paid time off. That means every time one or both of us were in the hospital with my daughter over the years, income was not being earned. In 2013, we both spent an entire month at the hospital when she was fighting for her life. We both had no income for an entire month. These are just some of the examples that we have navigated together.

The rough financial times are trying. It's stressful to figure out how to pay the bills when the income isn't as much as usual. However, we have learned how to grocery shop on the cheaper side and make every dollar count. In addition, we know the importance of saving up in the better times for the shortages that happen during the harder times.

Don't get me wrong, we have had some struggles. I've went to the grocery store before with $30 trying to figure out what I could scrape together for meals. Sometimes, a lot of things hit at once (i.e. a car breaks down while you're unemployed and you receive an unexpected medical bill), and it can be simply overwhelming.

The main thing we have discovered in our times without our regular income is that somehow things always worked out for us. We give credit to God for helping us meet our needs. Did I mention prayer is a good thing to do? Going without our regular pay is never easy, but we've done it before. We can do it again during this COVID-19 crisis.

2. Plans that are Canceled
It is disappointing to cancel plans, especially when the decision is out of your hands. Due to my daughter's numerous illnesses, we have had to miss and cancel dozens and dozens of plans both big and small. Because of her health, we tend to hold our breath whenever we plan anything and hope we get to do it. It never gets easy. The disappointment is often met with tears and sadness.

In the past, we have canceled a family camping trip to Branson due to a hospital stay. I've missed school events for my son because my daughter's illness prevented me from attending. Our family has spent two Thanksgivings, a Father's Day, a birthday or two, and other minor holidays in the hospital. Those days looked nothing like we wanted, but the important thing was my daughter's recovery.

It stinks when your schedule has to be changed or plans seems up in the air. I know; I have been there multiple times. Still, I don't like it. Sometimes, I grieved over what we couldn't do, and that's okay. What I have figured out is that my perspective changes years later. The disappointment isn't as strong, and we have learned to make memories in the good times.

Today, I am reminding myself of these things as I am frustrated by the restrictions in life, my inability to plan, and my work changing. I try to tell myself that I won't always feel this way, and my family's safety is the most important thing.

3. Virus Anxiety
I have a healthy respect for viruses. I know what they can do to my child, and I know I need to avoid them if possible. Sometimes, my respect isn't healthy and I become very fearful. When your child has ended up on a ventilator from a common cold virus not once but twice, you end up being a bit fearful of germs. Germs are a real threat to my daughter's lungs.

That threat causes me to react differently when I know certain viruses are in our community. I find ways to avoid shaking hands with people at church. I don't take my daughter out to public places or grocery stores in an effort to decrease her risks. When we do go somewhere, we use hand sanitizer often. We may stay home for days or weeks, especially if my daughter is recovering from an illness. We adjust our lives to minimize the risks.

I'm really no more fearful of this virus than I am of any other virus. I understand the severity of this one, but all viruses are a threat to my daughter. However, I'm not use to hearing about a germ with such fear from the general population. I don't suppose most people have worried about a germ so much. Not me; this has been a normal part of my life for years. I have had to find balance though when trying live a life and minimizing our risks for my daughter. There does need to be balance, and decisions cannot be based upon fear. I've had years to sort this out!

Even though there are some aspects of this pandemic that are strangely familiar, there are plenty of things that are not. I won't pretend that I was prepared emotionally and mentally for this whole thing, because that wouldn't be true. I have struggled some days with my emotions and stress. It is reassuring to know that our family has ended up fine in any crisis we have lived through. That gives me hope for the future.

I pray this post gives you some sense of what families like mine go through multiple times a year. More importantly, when all this ends, I pray you'll remember people like us, understand our decisions, appreciate our struggles a little bit more, and reach out to offer help. Be safe!!
submit to reddit

Thursday, April 9, 2020

3 Things We are Doing to Adjust

We have had three full weeks at home on our new routine.

Like many of you, the COVID-19 pandemic has certainly brought many changes to our lives. My husband and I are both currently not working, which means we are home ALL of the time. That has been a major change for us. School is now taking place in our home. Social distancing and stay at home orders have meant we haven't seen our family or friends in weeks.

The first week at home went amazingly well. We weren't required to do school work that week, so we didn't. Instead, we had cooking lessons daily and some other life skills type of training (i.e laundry). We also played games, went for walks, and enjoyed our free time.

Then week two came. School work started, and the home isolation was beginning to affect all of us. Jaycee was extremely confused as to why she and her brother weren't attending school. Even though she's 14 years old, her minimal speech, Down syndrome, and Intellectual Disability make it difficult for her to understand changes and explanations. This wasn't a typical change to understand though; this situation had no reference point. It's a new situation for the whole world, not just my daughter. Therefore, it's hard to explain and harder still to understand what exactly she comprehends.

In short, there have been some wonderful days full of giggles and precious family time. However, there have been some difficult times. Jaycee has cried, yelled, refused to do something, put herself in bed (something she does when she is the most upset), asked to see her friends multiple times, and asked to go to church or school over and over. Perhaps, I should confess that I have struggled with my emotions as well. Most people have at some point!

For the most part, Jaycee has handled the many changes well considering everything. A change in her routine is difficult for her on a normal day. For example, when I take her to a specialist appointment and she misses school, I have to do some things to help her understand and prevent some behavioral reactions. For the past few weeks, I have asked her to adapt to multiple changes day after day.

There are some things I have been doing with Jaycee in order to help her understand. These are not magical solutions because some days have been hard. However, these are strategies that I know have helped her in the past.

1. The Checklist Schedule
The checklist schedule (pictured above) is something we use during summer break. Currently, I am using this checklist to name the major activities that need completed before Jaycee gets free time. She is able to read the list and check things off when completed. This old, familiar support has been used daily as she needs help understanding our days at home now. She reacts better to things when she knows what to expect, and this support greatly assists that need. 

2. A Daily Routine
Even though school is out, we have a set routine during the week. Both of my children thrive on routine. They get that from their momma! Our family has a new pandemic routine. I get Jaycee up around 7:30 if she isn't already awake. We start on her checklist items promptly at 8:30. We have lunch around noon followed by free time if her checklist is finished. Jaycee has a set bedtime as well. Each day, she video chats with a family member or two. The timing of that call varies depending on what she needs that day. A harder day means a call in the morning. 

We have some sort of a routine each day to help her cope and find stability. Some days are hard for me even as an adult, and it would be super easy for me to sleep in late and have multiple lazy days in a row. I know this would confuse Jaycee even more, so I press on. We play games, go for walks, make music, cook together, etc. We have made a routine for the time being. 

3. Social Stories
Thanks to Jaycee's school therapist, I found some helpful downloads online to use with Jaycee. We have been reading these social stories to Jaycee, which aim to explain the virus situation. Before we start our home school day, I read one of the stories to her. You can check these out too:

I found another resource which explains staying six feet apart and the use of masks on the Teachers Pay Teachers website.

These are the three ways that I am helping Jaycee adjust to the changes related to the virus. It can be expected that she may be confused and upset, but hopefully the supports are decreasing the chances. 

The pandemic has produced trying times for adults and children alike. We all need grace and patience to get through. I am grateful that we have been safe, but pray for those who have been affected by this awful virus. 
submit to reddit