Fun with Friends

We are so grateful that God gives different gifts to different people. Some are called to be teachers, or doctors, or to work with elderly, small children or people with special needs.  We have met so many wonderful people who choose and enjoy providing for the needs of people with disabilities. Two programs that Monica enjoys are the PinPals bowling group and SOAR dance exercise classes.  Both programs were started by ordinary people who felt called to serve people with special needs.

The PinPals bowling program is held at Bay Lanes, in Bay Village, Ohio. Mark Nazario, the owner of Bay Lanes opens on Saturday morning just for this group. The bowlers range from barely school age to adults and nearly fill all the lanes.  Mark offers a great price to make it affordable and Mary and Bob Custer put the participants into groups so they are bowling with peers, some with bumpers or other aids, some really good bowlers! Mark had a great video created highlighting the group.

PinPals at Bay Lanes  Mary,Monica,Mark

Monica is in the video with her bowling friends. They all get encouragement and praise throughout the season and certificates at the end.  This is significant to many young people who would never have the opportunity to be on a team or get recognition at their school.



More recently, she has joined some activities sponsored by Scott Montgomery at SOAR.  She attends a dance exercise class on Mondays. Not only is the physical activity good for Monica, but the people volunteering with SOAR truly show an interest in each of the participants. Two weeks ago, they all sang Happy Birthday to Monica and last week they took a photo of the group for a Get Well Card to one of the participants who was hospitalized.  The participants have a wide range of ability to participate in the exercise, but all are encouraged to keep moving and enjoy being together.Monica at aerobicsMonica at class

A faithful friend

A young lady from our church had a great idea. Instead of filling a service requirement for school by volunteering for some organization, she wanted to do something that was personally interesting. She hoped to be able to tell she made a difference in some way. She asked us if she could become a running coach for Monica. We told her that we weren’t sure Monica could become a runner, but that we would love to see her improve her fitness and maybe we could start there. We talked about our ongoing goal for Monica to increase her activity level. Our family has plenty of action, but Monica is often the observer, not the participant. We also talked about the benefit of regular interaction with non-disabled peers. So, Mary made a commitment to get together with Monica once a week for an hour. They started with stretches and a few exercises. Then they added walking. About every 4th or 5th week, they would play a board game or card game or do baking instead. Eventually, they began running together.
On Memorial Day, Mary and Monica entered a local 5K/1 Mile event. They were in the 1 Mile, but Mary encouraged Monica to run as much as she could. They had a blast.
They plan to continue their get-togethers even though Mary has long since completed her school service requirement.

How DOES she keep that slim figure?

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.