I haven’t gotten much done while the kids have been home on Easter break this week. Always hoping I’d be able to catch up or finish at least one project while we’re home and not running all over town, other things have kept all of us busy. With the end of the week approaching, I hadn’t yet had a chance to brainstorm anything for today’s Sunday post. So, while we sat at the orthodontist’s office late Thursday afternoon, I asked the kids for some help.
What’s inspired you?
What’s been floating through your minds this week?
What do you think people want to read about this weekend?
Ronan’s younger brother said, “Oh, you can tell everyone that we’re watching all the new A Series of Unfortunate Events shows. Remember how you made us wait until after Good Friday to watch the new season?”
Willem continued, “Yeah, but then, we binged the entire second season Saturday and Sunday!”
Smiling again, I laughed and said, “You did. You’ve also devoured reading and rereading almost every single one of the books again this week, too! But you know what, as much as you like it, some of the readers here may not know about the show or the books it’s based on.”
Thinking, Willem responded, “Well, we could tell them about some unfortunate autism events that we and Ronan have gone through. How about that?”
“My darling, I think you’re onto something,” I proudly stated.
“Plus,” one of the other kids chimed in, “It’ll help people know that we need than just more awareness this month. Awareness is not going to make autism any better in our house. It just isn’t.”
I nodded and said, “Right you are.”
“So, what unfortunate events do you remember, ones that made you frustrated? Lots of people know that you kids are super kind and caring, but that’s because I love to highlight those moments. I’ve shared that things can be really hard for me as a mom, but I don’t always include how hard it can be on you guys.”
Lowering his head, Willem quietly said, “You could tell them about the time that Ronan came to breakfast naked.”
“You mean like he did this morning?” I asked.
Giggling, I said, “The first time was kind of funny. That’s because he hadn’t yet hit puberty. But the latest time, like this morning when he was just wearing socks and his headphones. Yeah, it wasn’t so funny.”
“Mom, it was totally embarrassing.”
“I know, honey. I was actually embarrassed, too,” I admitted.
“We need to make sure Ronan has a change of clothes in a small basket in his bedroom instead of your dresser (Ronan can’t have a dresser in his room so all of his clothes are in his brother’s room). Daddy’s going to help make a sign like Ronan used to use—it’ll be like one of those ‘first this, then that’ signs he had. ‘First get dressed, then come to the table to eat.’”
Willems eyes lit up, “Oh, that’s cool!”
“Yep. We have a problem – nakedness! But Daddy already came up with a solution – keep clothes more accessible…and on. We’ll do that until it becomes a habit. If you want to help, that would be awesome.”
“I do,” Willem said.
“Great! We’ll start tomorrow,” I told him.
Fiona had a story to share, too. “Hey, guys. Remember when Ronan stole the French fries from a Hispanic family at the Chic-fil-a? I was mortified. He grabbed them so quickly that I couldn’t stop him. I said, ‘¡Lo siento! ¡Lo siento!’ to them hoping they’d understand. I think they did. I hope they did!!”
“Oh, that’s happened other times,” Willem added. “It’s so embarrassing.”
“It’s happened when he’s with me, too,” I said. Now when we’re out and we have to pass by a few tables in a restaurant, one of us walks in front of Ronan scoping out the tables he’ll pass. The person next to Ronan holds his hand and puts something in his other hand, like a to-go cup or his iPad if we’ve brought it, to keep him distracted. That’s helped a ton.
Izzy thought of something. She almost cried remembering. But first, a back story.
Last Friday night, I took the girls to Church to pray the Stations of the Cross. It would be “living” stations with our youth group acting out the Passion of Christ to include His death. Izzy really connected with the prayers that were said and was quite moved with the youth groups’ powerful and prayerful reenactment. On the car ride home, she said she was excited that she got to go and even more excited that Easter was so close. “Mom, I can’t wait for Sunday!” In preparation for Easter, she’d baked some goodies for the weekend. As we walked in the house, her expression immediately changed.
On the kitchen counter was a large heart-shaped baking pan. It was supposed to have jello in it, jello she’d made earlier that afternoon that was safe for the kids to enjoy (i.e., cleaner ingredients). But there were only 2 small pink blobs on it instead. Before she could ask what happened, my husband said, “I’m so sorry. Ronan found it. He took it to the living room and then ate the whole thing.”
“Why wasn’t the refrigerator locked?” she sobbed.
He explained, “It was until I started to put the leftovers away. Ronan snuck in and grabbed it while my back was turned. We can make more…”
Tears steadily streaming down face, she cried, “No, we can’t! Mom gets that special, and I used the last box. I know I’m not supposed to be mad at him, but…but it was for all of us, not just for Ronan!” While comforting Izzy, I didn’t tell her that I’d bought 2 more boxes on my last shopping trip and that she’d find them in her Easter basket on Sunday morning.
I tried to tell her that sometimes heartache fades away quickly; other times it takes a while for healing to begin. But nothing we said Friday night would make Ronan’s little sister feel better. She was knee-deep in anguish. Her brother, whom she loves dearly, hurt her. Mind you, it was not a malicious kind of hurt, but it was painful nonetheless. I knew that she’d eventually be okay, but that would have to happen on her terms which is why I dared not say anything about the other boxes of jello.
Sunday morning when she did find them, Izzy welled up a tad.
“Yes?” I smiled slyly.
“Mom. Thank you.”
“Thank you for being an amazing little sister,” I told her. “I know it’s a tough job, but you’re so kind and helpful to Ronan. I’m really proud of you.”
There were smiles all around on Easter. That weekend was a success. Until Ronan found the bags of Trader Joe’s candies the kids had gotten.
“Oh, children. I’m so sorry. He’s just so clever. We need to find a new hiding spot for your goodies…”
As much as the media tries to sugarcoat autism this month, remember that the real families of autism are living quite a different reality. In our house, autism can be painful. It can be hurtful. It can be sad and frustrating as well. Ask anyone of us and we’ll honestly state that autism isn’t a gift. It’s not a blessing either. The child with autism most certainly is a blessing, but the regression, the inability to effectively communicate, and the seizures that scare all of us are not and never will be anything to celebrate. Ever.
As much as we struggle, and believe me, all of us Jamesons do at one time or another, we will never stop fighting or standing up for what Ronan needs. How could we? He needs us as much as we need him. So, we do our best to keep our chins up, to stay the course, and to continue to believe that something will get better. That includes the siblings, too.
They refuse to let any of that stop them from being kind and helpful despite how unfortunate some parts of life have been. The sibs miss out on what some other kids get to do and see. They don’t get all of my attention all of the time and that they worry for the future as much as I do. My children are stronger because of their brother and are very aware – painfully aware – of what autism is, of what it can do, and of what it can take away, too. I’d do anything to rewrite their history and to give them a different path, including one that didn’t have as many unfortunate events as they’ve had to encounter.
Cathy Jameson is a Contributing Editor for Age of Autism.