Caregiver Monica

A reader of this blog might wonder, what has Monica been doing the past many months?

When Monica’s family was visiting relatives in England in December, Monica and her mom had hoped to be a comfort or a help in her aunt’s valiant fight with cancer. Instead, Monica’s mom herself had to be hospitalized with serious medical issues. Monica and her younger brothers had to return to the States alone to get back to work or school, while their dad stayed with their mom. It was a serious adventure, rather than a fun, exciting one they might have loved to take.  The three of them took a train, transferred trains, rode the underground (the Tube), then stayed alone in a hotel, then rode a plane to Toronto, found the car in the park-n-fly lot, and drove four hours to home. They cooperated as a team with no problems. They also had a great prayer team at home and in England storming the heavens for their safety and their Mom’s healing.

When arriving home, the three found Grandma and their older siblings had already mobilized to keep the family together while Mom and Dad were still managing medical challenges.  Monica had to adapt to many changes. Dad brought Mom home to Ohio in a Life flight.

After a week in the hospital, she was moved to a rehab facility. Monica had to see her mother unconscious, then regaining consciousness, but unable to do many things.  Monica wrote notes to her mom and prayed for her with the family. When her friends took her to dinner, she invited them to the rehab center to visit her mom too.

Mom came home faster than anyone could have hoped; thankful for the miracle of the perseverance of Monica’s dad to get the right medical attention, the miracle of all the connections among family and community providing such amazing prayerful support and the miracle of healing.

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Monica found her mother mostly on the couch and it was Grandma doing the driving, shopping, laundry and organizing the house. IMG-20170126-WA0004

Monica had a little trouble adjusting. At the same time, Monica had work changes: a new work location, a new supervisor, a new van driver. Monica was not able to describe how these changes were stressful for her, so it came out in some disagreeability and difficulty cooperating – some just going to her room and closing the door.

As things settled down for her, Monica began showing more and more compassion to her mom.

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When arriving home from work, Monica goes right to her Mom to see if she needs a drink, or Tylenol, or another blanket. Monica increased her determination to complete more household chores.  Monica began calling her mother every day from work during her breaks and lunch to check on her. When Grandma had to leave, Monica immediately started making breakfast for her mom every morning.

So much to be thankful for!

Monday, Monday

Monday morning chores.

No dust can settle on this girl!

Wake up. Get dressed in work uniform. Eat breakfast. Brush teeth. Put lunch in backpack.

Ready to go

Empty and load dishwasher.

Dishwasher

Gather laundry from hampers in the bedrooms. Take to laundry room and start a load. Whites first.

Take the city-issued garbage and recycling bins to the curb.

Practice piano – 10 minutes.

While watching for your ride, practice Italian lessons with Duolingo on the iPad.

Italian

When van comes, head out the door. Greetings to work friends! Off to work.

 

And it’s only 7:45 a.m.!

How DOES she keep that slim figure?

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Do you remember when you bought your green Honda, suddenly everywhere you went; you saw green Hondas? It was something like that when Monica was born. I don’t think I ever noticed people with Down syndrome before, but suddenly, one person with Down syndrome was waiting for his mother at the hair salon, a person with Down syndrome was wiping tables at the McDonald’s and a person with Down syndrome was boarding a city bus outside the shoe store. Unfortunately, in my early days of wondering all about what my new life with Monica would be, this gave me one more thing to wonder and worry about. Almost every adult with Down syndrome that I saw was overweight.

I am not an athlete, and I am not even thin, but I certainly hoped that I would be able to help my children maintain healthy bodies, and I wondered if this was going to be a really big challenge for Monica. I believe there are several factors that go into the body shape of an adult with Down syndrome. Some factors are genetic and some are environmental. We can control some of them.

Most kids with disabilities are not going to be able to participate in gym class and organized sports the same way that other kids do. It takes a little more work to find activities that are motivating. Even our experience with some of the Special Olympics events involved a lot of waiting and not so much physical activity. Many kids with Down syndrome need more supervision to keep them active and out of trouble, so it is an even greater temptation to use the TV as a babysitter. Monica really enjoys eating and she never feels full. Monica is not as easily engaged in the table conversation as other family members who might be speaking quickly and even interrupting or talking over each other and it is hard for her to keep up. Frequent illness or other health problems like joint pain, hypothyroidism, and diabetes, are very common among people with Down syndrome, and if you don’t feel well, you are going to be less active. It takes more effort for Monica to work against the low muscle tone and engage in physically demanding activities.

There are strategies for all these things. First of all, we have been proactive in Monica’s medical care. We had the well-baby and well-child visits on schedule. We always followed up on suggestions from the pediatrician to get the blood tests and see the specialists when he had questions. Most of her medical issues were resolved pretty quickly. Although she has gotten sick more frequently than our other kids and has more strange medical issues, she is overall a healthy person.

With some kids, parents have to make them do homework or read 15 minutes before they can go out to play. With Monica, I often had to make her ride her bike or shoot some baskets before doing the sedentary activity she was choosing. Having brothers also helped to keep her interested in outdoor active pursuits like tree-climbing and swinging from the rope. We have a great ice cream store just less than a mile from our house. We all love ice cream, so we made it a family policy that we only go there on foot or by bike, never by car. When assigning chores, I also give Monica jobs that require moving. She is good at jobs like emptying all the trashcans from all the rooms or carrying all the towels from the bathrooms to the laundry room.

We had pretty strict TV rules for our older kids, and so we had to stick to them for Monica. No TV Monday thru Thursday, and only an hour or two on Friday afternoon. No TV on the weekends unless it was a whole family event like watching the Olympics or a movie. Over time, TV rules were extended to computer games. Even solitaire with real cards is more active than playing it on a screen. This past year, we bought a medicine ball and have times throwing the ball. It is fun and Monica has gained in skill while burning calories.

Some of the food rules in our house were enforced for all the kids, probably to keep me from less cleanup work. But having rules in place has been very helpful for Monica, who probably doesn’t have the same self-control or natural ‘full’ feelings of the other kids. The biggest overall rule is we only eat in the kitchen (or at the dining room table for special occasions.) No one takes food to their room, their homework desk, in front of the computer, etc. In addition, we are pretty consistent with an afterschool snack and then nothing until dinner, and nothing after dinner. No grazing all afternoon or all day. Even on Saturday, we eat breakfast and lunch together as much as possible and don’t have people constantly pulling out something to eat. Our ‘outside’ eating rules probably came from budget considerations, but have been helpful for Monica too. We always pack a lunch or snack when we go to the zoo or park , or a brother’s game, so we’re not tempted by the posters at the concessions. It is much easier to hold to a rule of ‘never’ buy from the concession stand than ‘sometimes’ because kids will always want THIS to be the time. Monica’s understanding of degree is not as clear as the other kids. So it is better to have a rule that is black and white than one that has words like more or less. The snack I pack is going to be limited in fats and sugar and calories compared to what they would want from the concession stand. If we are eating at a restaurant, we always all have water to drink. We also started that rule because of the cost of a large family eating out, but it has been a great rule for Monica. She would probably never really understand the point that the price of a soda in a restaurant is so much more than buying it from the grocery on sale and that it could affect how often you could eat out. It is better for all of us to drink water than soda, but it is so much better for Monica to not keep drinking refills of non-nutritious calories.

Lest you think we are the meanest parents when it comes to food, I will let you know that we do have dessert almost every night. But I never set out the package of Oreos or the cookie jar, I give each person one or two cookies and put the package away. Or if we have ice cream, we have very small scoops. The idea is that we can all enjoy a sweet treat, but it should not be a large part of our calorie intake. We also have Family Movie Night at least once a month when we serve popcorn and soda and sometimes even candy halfway through the movie. Movie night and parties are the only times our kids have pop.

The most significant factor in keeping Monica at a healthy weight is that her Dad sits next to her at the table. He gives quiet reminders to slow down or to remember to chew well. When the other kids are gone, we will probably just fill the plates before bringing them to the table. Since we currently have teenage boys who play sports, it makes sense to bring the serving dishes to the table and let them take seconds or thirds as they need it. Monica eats fast and always wants more. Her Dad stops her when she reaches for seconds. He may have to do it several times in a meal. He never makes a fuss and we don’t let it make the meal into a battle. Tim just keeps reminding her that she doesn’t need to eat what looks good; she needs to eat the right amount to stay healthy. This has been so helpful to me because I am often tired by dinnertime and would not feel like paying attention to what Monica is eating.

Like other concerns we had when Monica was young, our worry about Monica not keeping a healthy shape has been resolved through information gathering, communication, finding strategies and team work.