When everyone is home and no one has to run out to a meeting or a sports event, we sit and eat as a family around 6pm. That includes Ronan. It’s taken quite of bit of work to have Ronan join us at dinnertime. It’s not that he’s physically unable to join us. He’s more than capable of sitting and eating at the table. It’s just that sometimes, he’d just rather do his own thing than sit and hang out with us.
Lately, with tons of work and with lots of encouragement, Ronan has not only joined us at the table, but he’s stayed for the entire meal, too! He’s still non-verbal and doesn’t join in on the conversations yet, but he’s present for all the chatter, laughter, and silliness that our family dinners typically include.
It’s been a real treat to have all 7 of us at the table. While we’re gathered, my husband asks the kids how their day was. A few weeks ago, he got creative and asked them for 3 Up/3 Down—tell us 3 positives and 3 negatives (or 3 challenges) you’ve faced that day. From our teenager on down to our youngest, it’s been interesting to hear what’s a positive—a good grade, talking to a friend, or seeing Mommy at school for recess duty, and what’s a negative—studying for an exam, getting an owie, or thinking about Daddy’s upcoming business trip. The kids’ convos have always been lively, but with these nightly 3 Up/3 Down prompts, we’re hearing more details about their day.
The week before last, Ronan’s little sister, Izzy, wasn’t feeling good. Unable to make it to school, she stayed home and rested. While home, she got a peek at Ronan’s daily activities. She also got a peek at the many challenges he faces, including ones that cropped up during his therapy session with our in-home therapists that morning. That night at dinner, Izzy’s 3 Ups were about staying home from school, getting to see Mommy all day, and having time to hang out with Ronan. Happy to hear positives even though she was still sick, I smiled. I smiled until I heard her third down. Her demeanor had changed by the time she’d gotten to it, and I could tell she’d been thinking about it all day, “He works really hard, but Ronan still can’t have a conversation with us.” With a lump in my throat, I had a tough time swallowing the bite of food I’d just taken.
Since she wasn’t yet ready to go back to school, Izzy stayed home again the next day. I asked her, “Izbiz, remember when you told us your 3 Downs last night and you talked about Ronan? Can you tell me more about it?” She said sure.
She gave me a hug then started, “It’s kind of upsetting that Ronan doesn’t get to move around as much as we do. He plays around on screens (Wii and Subway Surfer), which is fine because it makes him happy, but he doesn’t get to talk with us or join in our play – especially in our laughing moments. I want him to join in with us. But he can’t...”
Pausing, Izzy thought for a moment but didn’t continue. I said, “It stinks, I know. Can you tell me things Ronan can do? I know you saw him do tons of stuff while you were home yesterday, things you don’t normally get to see because you’re at school.”
Izzy smiled recalling how interactive and vocal he had to be making his requests. She then offered, “This is what I think Ronan’s 3 Ups would be if he could communicate them to us: Ronan gets to go to his favorite place to eat when we go out for dinner. He likes it when we get to help him get his Wii game ready so he can have fun when we have our fun. He actually gets to say some words, too. Well, just a few words when he tries to talk…Again, Mom (but it comes out sounding like Em-Em), and YUM. I love to hear Ronan say the word yum because it makes me happy. It’s the one word that Ronan says the best. And it means he’s really, really happy in that moment.”
I love that Izzy knows that despite how far behind he is developmentally, Ronan is happy. He seeks her out often, and she makes sure to spend time with him. He’s always on her mind and even more so when she’s out of the house. That’s true for each of the siblings. In fact, they all come home from school with the same question: How was Ronan’s day? If it’s been a good day, they smile and ask for more information. If it’s been a bad day for their brother, they frown and get quiet. Not wanting to worry them, I quickly thank them for thinking about Ronan while they’ve been at school and tell them at least one good thing that did happen.
Sometimes it’s a simple thing I share – Ronan remembered to put his cup in the sink (and not in the trash can)! Other times it’s a huge accomplishment like the one that happened last week: “Guess what? All this time, Ronan knew what the dustpan was! I was sweeping the floor after breakfast and blurted out, ‘Hey, Ronan. Can you get the dustpan for me?’ You know what he did? He went right to the cabinet where we store it, and he got it! He didn’t knew how to use it right away, but with my help, he figured it out pretty quickly.” The kids immediately asked, “Of course you took pictures of this, right Mom?”
Ronan’s brother and sisters cheered so loudly and couldn’t wait to see the photos I’d taken. While scrolling through the photos, Ronan’s youngest sister’s eyes grew wide, “Does this mean I don’t have my Sweep the Flore chore anymore?? Can Ronan take that chore now?” I laughed and said, “Give him a few more days to practice and then maybe we can talk about trading jobs.” All the kids have chores, Ronan included. He inherited one of the kids’ chores last year when he randomly but successfully unloaded the silverware from the dishwasher. He has to be directed to do it now, “Time to do your chore, buddy,” but he’s fully capable of doing the task and knows he can’t walk away from it. It’s tempting for Ronan walk away, but the praise he gets while staying on task keeps him focused.
Staying focused can be hard. That’s why we as a family always look for the positives – at least 3 each night. While we’re gathered around the table, while we remember the day, while we reflect on all the events, the interactions, and the experiences we’ve each had, we find many things to be thankful for. We still mention the negative ones, because ignoring them won’t make them go away, but we focus on and give thanks for the positive. The best ones come from the siblings when they chose to share one of their Ups about their brother.
On any given night, at least one of the kids thinks to share something hopeful, happy, or hilarious about something they did with Ronan when it’s their turn to talk about their 3 Ups/3 Downs. Easily they could use all their Downs on Ronan – He still can’t talk, he still can’t play, and he still can’t do what they do, but they live for the Ups – Ronan can try, Ronan does try, Ronan never gives up. None of us would dare think to give up on Ronan. How could we when he’s been our biggest teacher? He’s taught us to do more, to do better, and to celebrate the positive. May we always remember to take time to celebrate the positive.
Cathy Jameson is a Contributing Editor for Age of Autism.