I was sitting on the couch with Ronan a few nights ago when he signed a request. He wanted to watch a movie. I told him yes, but before I turned the television on, I brought over some of my old school supplies. Since it was late in the day, I knew that Ronan’s attention span wouldn’t be too long. Regardless, we needed to do some reviewing of skills I’ve been working on with him. That meant a quick peek at the world map, practicing some cursive letter writing, reading through some math flash cards, and catching up on some reading comprehension. For reading, I picked out an old coloring book I’d used as a resource back when I taught at a small Catholic School. Even though almost 2 decades has passed since I first stepped foot into a classroom, much of the material I’ve saved from those early teaching days is still relevant. That includes this particular coloring book.
The book covers basic Catholic doctrine for young children. Included are the 7 Corporal Works of Mercy. Simply put, these are small acts of love that we can do for others. We perform those acts of love when we: Feed the Hungry, Give Drink to the Thirsty, Clothe the Naked, Visit the Imprisoned, Shelter the Homeless, Visit the Sick, and Bury the Dead. As Ronan and I went over what these acts of kindness meant, Ronan’s youngest sister joined us in listing ways people help each other. While we talked, she realized that we don’t have to go too far to perform these acts. We do a lot of them for Ronan automatically.
Feed the Hungry
I remember having to switch out practically our entire pantry and refrigerator after learning that gluten and casein could do a number on kids like Ronan. I wasn’t thrilled thinking about not being able to use all that food—regular bread, crackers, waffles, oatmeal. All the cheese, cow’s milk, and yogurt. With each item tossed, I was utterly overwhelmed wondering what on earth I was going to feed a kid who loved to eat wheat and dairy. Staples my siblings and I grew up with - pizza, peanut butter and jelly sandwiches, and milk - were now off limits. While learning how to eliminate the foods that caused severe inflammation, I slowly replaced our family’s menu with safer, greener food options. At one point, we all switched to gluten-free. Soon after, like Ronan had to, we eased off the dairy. We did that for a few reasons, but the neatest one was so that we could eat in solidarity with Ronan. My typical kids can now have more “regular” foods than Ronan probably ever will, but they make sure to never taunt him about it. When they get special treats, like when a friend brought them Krispy Kreme donuts last weekend, they made sure he got something fun and yummy, but safe for his tummy, too.
Give Drink to the Thirsty
Removing milk was one of the most traumatic acts for both me and my children. In those early days when I knew far less than I do now, I had no idea that dairy could cause major bowel issues. The more I learned, the more I made a connection that Ronan was severely affected by dairy products, including milk. (His siblings were affected, too, but to a lesser degree.) I found replacements, as I know many other parents have had to, but getting Ronan to drink something other than milk took some time. Once he did, though, his bowel issues weren’t as explosive. Brain fog had lifted, too. Now, when Ronan’s thirsty, he signs for juice. The juice is watered down quite a bit to the point of it being more water than juice, but what’s even more exciting is that after some regression, he can use a regular cup like his siblings do. He hasn’t mastered that skill completely yet, but he has come so far and with the encouragement from his brother and sisters.
Clothe the Naked
Sometimes tags on clothing bothers kids like Ronan. Sometimes when a drink has spilled, an immediate outfit change is necessary. That shirt must come off. Those shorts must come off. And the socks, and the underwear. Even if there is no need to change the clothing, it all comes off anyway. I keep a change of clothes in Ronan's backpack. I keep a change of clothes in the car, too. That’s because we've found ourselves in some very uncomfortable situations before where no matter how much we wipe the shirt dry, no amount of wiping has brought any comfort. So we clothe the naked, with tagless shirts, with an entirely fresh outfit, with whatever we can knowing that there may be some not-so-kind stares from others while we do so. Those stares can hurt, but we never let Ronan see them.
Visit the Imprisoned
After I read the short description in the book, this one made Ronan's little sister stop and think. "Prisons do not have bars and locks. Children who ignore or abuse another person who is different create a prison of loneliness. We can unlock those prisons." She and I originally thought this work of mercy was about going to a building that housed criminals. I never thought of it to mean help those around us who might be abused or harmed, either physically or emotionally. My daughter said, “Ronan is kinda stuck in his body. We’d never abuse him or hurt him because of that. We’ve only helped him. But could he be one of those people who might be “in prison”? Yes, sweet thing. I do believe that some days, especially on those very tough days when Ronan cannot get us to understand what he’s trying to say, that he absolutely feels locked up.
Shelter the Homeless
When Ronan’s little sister learned that some people were homeless, she knew that meant they might live on the streets or look for a shelter to stay in. While in a shelter, they might be limited in what they can do. Kind people can help the homeless get back on their feet. We’re not homeless, but Ronan is limited in what he can do here at home. We’ve had to buy adaptive equipment for him, modify parts of the house for him, and make sacrifices for him so that he can be happy, comfortable, and safe. The kids have all had to make sacrifices, but we try not to focus on what they’ve had to give up or walk away from. Instead, we try to remember what we got to do for Ronan instead. That might mean helping him with something he just can’t do. It might mean leaving a performance or game early. It might also mean one, or all of us, spend a quiet night at home with Ronan instead of out with friends. We can’t always make it out altogether, but we always promise to try again the next time.
Visit the Sick
Autism is medical, and some of our children have serious medical issues. In clinics or hospitals more than the average child, they need comfort, reassurance, and hope while they’re there. One test, after another. One medication trial after another. One specialists' opinion after another. It's exhausting! It’s exhausting for the child and for the parents. Just last week, we took Ronan to get yet another blood draw. He hates those days. We honestly do, too. Ronan’s little sister offered to come with us, and can I just tell you that that always-happy little girl did wonders for us. Initially, I said she couldn’t come, but she really wanted to be there to support Ronan. Her positive thinking, and a wonderful reminder from my sister to ask St. Januarius to intercede for Ronan to have a successful blood draw, helped us have one of the best successful blood draws ever!
Bury the Dead
When they were much younger, my kids were quick to remind me that death is sad, but after they die, they’d be in Heaven. Heaven is just the best. That’s what they strive for. That’s what they pray for. By being good, holy, and helpful kids, I think they’re on the right path. Their perspective is so innocent, and I try to keep it in mind when I learn that a child has died. I have heard that losing a child is one of the worst sufferings imaginable. We have had our own scares with Ronan during past wandering incidents, but we’ve always been able to bring him home. For those who have lost a little one due to wandering or from a vaccine injury, my heart aches for you. Know that we pray for you, for your family, and for your healing. For those who believe in Heaven as we do, I trust that when you’re reunited with your child, it will be more amazing that you could ever imagine.
While we read through that coloring book, we turned reading about the Corporal Works of Mercy into more than just a lesson. Ronan offered input when he could, and his sister reflected on how her role in Ronan’s life has been much more than just that of being a little sister. While those kind acts may be designed to foster God’s love in others, to include needy strangers, she realized that she and I have performed those works countless times every week. With all the delays he has, I’m hopeful that she’ll continue to serve Ronan for more years to come. Of course, my daughter is called to be a caring sibling no matter what, but to be a super sibling to a brother with as many medical problems like Ronan has isn’t always easy. It isn’t easy for me some days either.
For those of us who have kids with severe medical issues and with potentially intense behavioral outburst, some days we can only go so far. Because of seizures, because of behaviors, because of sleepless nights, and because of the nature of our family’s dynamics, we’re home more than we’re not. While we’re here, we’ll serve Ronan and hope that when we get out there in the real world, we’ll find opportunities to serve others, including strangers who can also thrive on God’s love through us. But for now, our home is a perfect place for ministry, for fellowship, and for performing meaningful acts of kindness for one – for Ronan.
Cathy Jameson is a Contributing Editor for Age of Autism.