By Cathy Jameson
Today is April 2nd. For our family, it’s not a day we celebrate. For us, it’s just another typical day in April. Typical days in our house include taking turns keeping a watchful eye on Ronan. He’s 14-years old, non-verbal, and severely delayed. Each day, we make sure Ronan doesn’t wander, we make sure when his diaper is full that it is immediately changed, and we make sure he doesn’t have any seizures. If he does have seizures, like he did several times last week, we make sure we’re ready to administer emergency medicine to make them stop. It’s challenging, but we do everything we can to keep Ronan safe. We also do what we can to educate others on how debilitating regressive autism can be. Some people close to us appreciate how very difficult life is for Ronan and for us. For that, we are so incredibly grateful! For those who have zero understanding and who chose to insult families like mine instead, which has happened, no amount of awareness will help them understand just how debilitating autism can be.
As soon as Ronan’s little brother got in the car, he said, “Mom, I need to tell you something that happened at school today.”
“Sure, buddy. What is it?” I asked.
He said, “I don’t want to say it in front of the girls.”
A sinking feeling came over me. My usual upbeat kid was visibly shaken. “Okay. Let’s get home and then we can talk.”
While Ronan’s little girls chatted in the backseat, Willem and I sat in silence. Half-way home, he spoke up, “Mom?”
“Yeah, honey?” I said.
“I guess I can tell you now,” Willem replied.
“Are you sure? We can wait until we’re home if you want,” I offered.
“No, I think they should hear it too,” he answered.
“I was in class and we were playing a game where we had to go up to the board and write the answer to a question the teacher asked. It wasn’t my turn, so I was sitting in my chair when another kid walked past me on his way up to the board. He came up to me and pushed me hard. He didn’t say anything, just pushed me. After he wrote the answer on the board, he started to walk back to his seat. He walked near me again on his way back, so I asked him, ‘Why did you do that?’ He didn’t say why he shoved me but he said, ‘Well at least I don’t have a brother with autism.’ Mom, why would he say something like that?”
Dumbfounded, I couldn’t answer.
Taking a minute to process what I’d just heard, I asked, “So you didn’t provoke him?”
He said, “No.”
Easily I could’ve been filled with rage. But what came over me was sheer sadness. Then tears. Then more sadness.
I needed more information, so I wiped my eyes and quietly said, “Go on. What happened next?”
Willem said, “I got really sad.”
“I bet you did,” I replied.
I then asked, “Where was the teacher during all of this?”
Willem gave me more details.
“The teacher had his back turned when I got pushed, and he didn’t hear what the other student said to me. My friends in the class saw that I was upset and asked me what happened. Since they’ve known Ronan a long time, they were just as shocked as I was to hear this other classmate say something like that. That class was almost over, so as soon as it ended, I talked to the teacher. I cried a little bit when I told him what happened.”
Oh, my heart. It ached.
Keeping calm, I said, “I would have cried, too, buddy. The kid should never have pushed you, and he has no idea that what he said was so hurtful. What did the teacher say?”
“I told him everything that happened,” Willem started. “The other student had to stay behind and tell the teacher what he did. Then later, we walked to the principal’s office. I told my side of the story, and then the other kid told his.”
Grateful that the teacher took quick action, I was very curious as to what happened next..
“Well, the principal said that what the other student did was wrong. And that Ronan had nothing to do with class. And that instead of making fun of him we can learn a lot from kids like Ronan.
He went on and said that Ronan is here to teach us - how to be kinder and nicer and better people. He said Ronan didn’t ask for autism and the Jamesons didn’t ask for all the hard work that comes with taking care of Ronan either. The principal said that kids like Ronan and other kids with disabilities can teach us so many wonderful lessons. We need to look up to them and to also respect them. He told the kid that Ronan is like a saint for our family and that Ronan is helping us get to Heaven.”
Willem confirmed, “Yep.”
I was floored.
We’ve known the principal a long time now, but we don’t share much about Ronan with him. It’s clear, though, that the times we’ve been able to bring Ronan to the kids’ school – when he’s been able to tolerate special events or performances, and when I used to have lunch at school with the kids and would bring Ronan with me – that the principal recognized exactly how difficult life for us can be. I appreciated how straightforward he was with the other student and made a mental note to thank him for speaking so kindly of us and so firmly to Willem’s classmate about his unkind words and actions.
There’s still one problem, though.
Despite this classmate knowing that Willem has a brother with autism, despite even having seen Ronan at the school several times, and despite the autism awareness campaign being in existence for as long as it has been – longer than any of these boys have been alive, the goal of the awareness campaign was completely lost on that classmate.
When people run a campaign, they hope to reach at least one person. They hope to change the life of that one person. They hope that that one person is so inspired that they will tell one, two, and up to ten more people about the campaign. As my typical son learned two weeks ago, the autism awareness campaign has done no such thing. If it had, he wouldn’t have come home as upset as he was. He wouldn’t have been as hurt as he was by the other child’s harsh and uncalled for words. He also wouldn’t be just as frustrated as I am when we see the endless blue washing that floods the airwaves every April trying to convince the public to celebrate a debilitating and life-long disorder.
As yet another autism awareness and month-long celebration kicks off this month will be doing the same as last month for our family. Surely our month will include hopeful, happy, and joyful moments, but we know that it may also include moments of frustration, grief, and sadness. We will find things Ronan does and be excited that he made progress, but we can never and will never celebrate autism.
We don’t celebrate seizures.
We don’t celebrate not being able to speak.
We don’t celebrate not being able to sleep.
We won’t and can’t celebrate autism and would never ask any of our family or friends to do so either.
Instead, we’ll tend to Ronan’s needs like we usually do. We’ll care for him each and every day. We’ll make sure he’s safe, healthy, and most importantly, happy. We will celebrate his gains and his progress as we always do. That’s my goal. That’s my family’s goal as well.
After the unfortunate incident that took place in his classroom last month, Willem came up with a suggestion. To make sure people really understand what autism means for families like ours, people need to see Ronan more often.
As we ended our talk that afternoon 2 weeks ago, Willem asked, “Mom?”
“Yes, honey?” I answered.
“Can you bring Ronan to lunch like you used to?” he requested.
“I can,” I said.
He added, “I think it would help.”
“Do you think it would help that one student? To see Ronan? To see what he can do and to see what he can’t do?” I asked.
“Yeah,” Willem said. “I think he needs to see both.”
“Okay, buddy. I can bring Ronan in,” I promised.
Children are naturally curious. I believe that this student, as well as others in the school, already know just how amazing Ronan is. That student likely just had a bad day. But he took out his frustration on a sibling of a severely affect kid with autism. It doesn’t matter who you are, but making fun of people – with or without a diagnosis – is just not acceptable. Since Willem never wants to experience that kind of moment at school again, he helped come up with a plan.
He knows that the type of autism Ronan has can make people uncomfortable, so Willem wants to help his friends learn more. He asked if he and I could plant a seed and be open to answering questions classmates might have, because one of the kids always has a question when Ronan’s been invited to join them. From the simple to the complex, I welcome and answer all of them as honestly as I can: Does he have a favorite movie? Why does Ronan wear those headphones? Can he say anything…anything at all?
Working together to help build a better understanding, and to model to the other students what compassion looks like, these kids will gain so much more than awareness. They’ll gain knowledge. They’ll gain confidence and know how to interact with Ronan the next time they see him. In time, we hope that they’ll be able to see Ronan as a kid just like they are kids. The more they know and the more they become comfortable around Ronan, they’ll be able to do something else – they’ll be able to show Ronan the respect he, and so many other children like him, deserve.
Cathy Jameson is a Contributing Editor for Age of Autism.