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!
I panicked, then I waited him out.
Willem, Ronan’s younger brother, did exactly the same thing on some stairs about 2 weeks ago. Making all sorts of noise and yelling while letting go of the railing, “Oh, no! I’m falling! Ronan, help me! I’m falling!” I loudly chastised him for doing that. “Dude! We don’t want Ronan to think it’s okay to fall down the stairs! He could get really hurt.” But here was Ronan imitating that younger brother of his and doing it quite naturally.
Ronan’s joked with us before. He did that when he first learned sign language. Around the age of 5, Ronan was picking up signs very quickly. Using them daily, and learning as many as he did in such a short amount of time, helped us know how smart he was. One evening, while changing Ronan’s clothes, I started signing to Ronan. “Ronan, show me mom,” I’d say, and he’d sign mom. “Show me sister,” and he’d sign sister. The words were too easy for him, so I asked him questions like, “Ronan, is Fiona a girl?” He signed yes yes. “Is Willem a boy?” And he signed yes while signing boy. Working on pronouns, I asked, “Am I a girl?” Yes. “Are you a boy?” and he signed and happily smiled “yes”. The kid loved signing, and I loved seeing him expand his vocabulary and ability to communicate effectively. I was almost done changing Ronan, so I asked him one more question, “Ronan, is daddy a boy or a girl?” With that same twinkle in his eye we saw last week, Ronan hesitated, then smiled, then signed, “Daddy… girl girl girl.” Looking up at me, he smiled again and laughed that same silly laugh we heard while he was pretending to fall.
The kids had gathered around at that point, and replied, “Daddy is not a girl! Daddy is a boy!” they squealed. Ronan enjoyed their attention, and enthusiastically repeated his signs, “Daddy girl girl girl!!!” We all pig-piled on the rug around Ronan and laughed together. I’m so glad that the siblings were there for that first joke and that he brought them into his latest one on the stairs. It hasn’t been easy over the years, but I’m so glad he’s rediscovered his sense of humor. I’ll hope he uses it again but in a safer location next time.
Ronan eventually made it to the top of the stairs after stopping, pretending, and creating a moment for new peals of laughter for the siblings. Later that night when we were gathered as a family for prayers, the siblings offered their special intentions for their brother as they always do. Even if one had already offered their evening prayer for Ronan “so that he can talk and communicate verbally”, they each repeated that same request that night. Willem did, too, but he also added, “…and so that Ronan doesn’t pretend to fall down the stairs again…” As everyone smiled I took a moment to let everything sink in. A tear was forming in my eye as I thought, What a burden this could all be for them! But it isn’t, and I am so grateful for that. It was my turn to add my prayer request. It was for Ronan, for his healing, for his siblings, for the love they have for each other, and for their actions—that their actions may continue to be pure and that they may always be full of hope.
Cathy Jameson is a Contributing Editor for Age of Autism.