By Cathy Jameson
A few years ago, I overheard something that didn’t sit well with me. A woman’s son needed some help. The boy, who was wheelchair bound, was positioned closest to his typically developing brother. Instead of asking her typical son to help his physically disabled brother, the lady got up, walked across the room and fixed what needed to be fixed. I didn’t know her that well, but I was puzzled at what just happened and asked, “Why didn’t you let his brother help? He was right there and could’ve picked up the book that dropped.” She said, “Oh, I could never ask him to help. I don’t want him ever to feel like his brother is a burden.”
It’s his brother!
Sure brothers can be annoying at times, but they can be so much more than that, too. They can be a friend, a confidant, a teacher, a partner in playtime, and also a role model. It’s not always the typical brother who’s leading the way either; sometimes it’s the kid with a disability who is positively shaping the life of another. I imagined that the boy in the wheelchair could offer plenty of teachable moments and learning opportunities to those around him, including to his typical brother. I also imagined that much of that would’ve been natural learning opportunities as well. The boy in the wheelchair had severe mobility issues and for several years already. The typical brother only knew him to be disabled. They weren’t living apart. They lived in the same household. Surely, the typical boy could provide some assistance some of the time. Surely, the disabled brother, who also had speech issues, could’ve used his brother’s help on more than one occasion, too. I didn’t want to judge a fellow parent, let alone a special needs parent, but I just couldn’t understand why she wouldn’t let one son help the other. Limiting a sibling’s interactions, natural or otherwise, could be detrimental.
I looked over at my daughter who’d accompanied me. Smiling a sheepish smile at her, I thought, Dear Lord, I hope she didn’t hear that. Each of my kids do so much for their brother, and they are years younger than these two boys were. I’d be heartbroken if any of them thought Ronan was a burden.
Over the years because of that sibling encounter that I’d witnessed and because of what that mom said, I’ve been more mindful of how I ask my kids to help their brother.
Hey, I think Ronan needs help with the putting the Wii disc in. Can you see if he does?
Kids! I need a charger for Ronan. Who has one that he can borrow?
Guys, Ronan’s sleeping off some seizures – let’s go watch a movie in the other room while he rests. I’ll set up some snacks for you.
I don’t always preface a request or a demand courteously all the time. Sometimes, I just tell my children that they need to do something quickly, and I won’t sugarcoat my words when I tell them. That’s happened when we’ve tried to attend an event that Ronan’s not able to tolerate any longer or if their behavior has become undesirable.
Kids, we need to go. Now! Ronan’s not having it, and I’ve got to get him out of here.
Hey, I’m going to sit in the car with Ronan for the rest of the game. Tell one of the moms to text me when you’re done.
Guys! Quit arguing! The noise is making Ronan anxious.
I don’t always apologize to them when I’ve had to speak curtly. I will if we’ve had to abandon their plans because Ronan’s gotten too worked up. But if it’s typical sibling stuff – like arguing over which DVD to watch, then I don’t apologize. Typical sibling stuff happens. Typical stuff happens when a non-typical sibling is part of the mix, too. Ronan’s picking up on that, and it’s rather exciting to see.
Last week, Ronan joked with his sister. It wasn’t a knock-knock joke or anything that had a punch line, but Ronan walked half-way up a set of stairs and stopped. He looked at me, and he looked at his little sister. While looking at us is not unusual, the twinkle he had in his eye was. What was he up to? I asked Ronan what he was doing while encouraging him to continue to go up the stairs. He’s got motor-planning issues, and the last thing I needed was for him to tumble and hurt himself. His youngest sister fully understood that also. Seeing him freeze in the stairwell, and remembering that he’d had seizures while going up a set of stairs last month, she maneuvered herself behind him and asked him if he could keep going.
But Ronan stood his ground.
Until he lifted one foot off the step.
And turned toward me.
And smiled a sneaky sort of smile.
Holding onto the railing, Ronan pretended go let go of the railing. Then he leaned backwards. Then he laughed. Is he pretending to fall down the stairs? Oh, my goodness, he is!