Through the years, I have found some of the best conversations I have had with my kids have been in the car. While I am driving, a little person would open up about an event, a problem, or concern from the backseat. The back of my head was non-assuming and lacked emotion. The back of my head was deemed “safe” for the big conversations.
The big kids have moved to the front seat. The only reason one of them is in the back now is that they lost the battle for “shotgun.” Now, seeing the side of my head or the back of a sibling’s head, the backseat revelations and big conversations, have stopped.
Yesterday was a day filled with anxiety and frustration. After catching the “video game fever” from Declan, Bob excitedly ordered an Atari online so he could share some of his favorite games with Declan. Frogger, Pitfall, Pong – there would be hundreds of new games to play. Declan’s excitement was palpable.
The game was to be delivered before 9:30 PM. That is an entire day of pacing. Looming by the front window to see if a delivery truck was present or a box had been left. Trips to my computer to refresh the delivery status. Every five minutes of two hours at the pool, assuring a dripping eight-year-old that I DID just refresh the Amazon page on my phone and that the package still was not delivered. Hours of tears and laments how life is “not fair.”
In a moment between pacing, refreshing my computer, and tears, Declan settled on the ground in front of the TV to play a game of Super Mario Brothers on his Nintendo. I looked at the back of his head as I began to walk from the kitchen to the laundry room.
“Mom?”
“Yeah?”
“What is autism?”
I stopped walking and stared at the back of Declan’s head.
Now, one would think after all I have written or talked about autism, I would have a clear cut answer to give. I had always assumed we would have “the autism talk” one day. One day, I figured, Declan was going to want to know why he goes to speech or occupational therapy at school and his peers do not. One day he was going to wonder why he has a 1/1 aid or why he rides the small bus and his peers do not.
One day.
We have never hidden from Declan that he is on the autism spectrum, although his awareness was probably more second hand. When introducing Declan to a haircutter, dentist, or someone new who would be in contact with Declan, we would have to notify them: “Declan has autism,” so they were aware of his needs. But what did the word autism mean to Declan?
“A person who has autism is a person with a very special brain compared to people that do not have autism.”
“What is brain damage?”
“Brain damage means that a part of a person’s brain was hurt, or damaged, and they may have lost a skill, like being able to talk or remember things. But brain damage is different than autism.”
Just like those car conversations, I stood quietly and waited. The only difference was this time I was watching the back of Declan’s head while he drove Mario through different levels.
“Kids in my preschool had autism. They talked funny.”
“Yes, but remember you used to talk funny too. You didn’t talk for a long time, so when you started talking, you sounded different than you do now.”
Another long pause.
“Do I have autism?”
“Yep!” I answered cheerfully, “And just think of all the special things your brain can do!”
Declan’s eyes never left the screen as we talked about all of Declan’s knowledge, interests, and abilities. We talked about how Declan would have his special brain for forever, and how his autism brain was never going to go away. That his autism brain was a special gift.
When Declan was content with the conversation, while Mario moved along, I walked away from the back of his head. I began to wonder where the conversation originated. Had he watched a YouTube video where someone negatively referenced autism? Autism and brain damage were back to back questions. Even I had just seen a show on Netflix where they had called a character an “Asperger” as a dig. Why do people think that is okay?
I left the conversation open, encouraging Declan to ask any questions he wanted to. Bob and I compiled a list of famous autistic people or people thought to be autistic with Thomas Jefferson, a favorite person of Declan’s, topping our list. The “one day” we planned to have the autism talk is now and we need to be prepared to talk to Declan at his level of understanding.
Mercifully for all of us, the Atari arrived. Declan has enjoyed many of the games, by himself and with a nostalgic Bob. Me? I keep walking back and forth, looking at the back of Declan’s head, ready for the next autism conversation to begin.
Being open is so the best way. The number of times a Doctor would ask if our son could be taken outside so they could discuss things with just us or they talk to us rather than to our son, So frustrating. But thankfully we have stuck to our guns. You talk to him and we listen. We have so very far to go. I still regularly hear and see stereotypical crap about autism and Aspergers. The problem is too many people believe it. Look after yourself Robyn.
I agree. Declan was diagnosed so young that I don’t know what information has stuck with him and what information hasn’t. We talk about autism and different behaviors, but I still didn’t know what that meant to Declan. I agree – talk to him, not me. That is really the way to go. Thank you! You too!
Hi Robyn, I’ve just emerged from my final big assignment, so I’ve finished studying for now and can have a break until October. Of course I had to ban myself from blogging again for a while and concentrate with the little time I’m getting to study at the moment, so it’s great to get back in touch, especially to read about your ‘autism talk’ with Declan. It’s not something I’ve really thought about with Nathan yet, but it seems you handled it with characteristic skill and diplomacy, and it seems to have gone remarkably well so far. Well done, as always, you’re such a great mum, and you always seem to know the right thing to say and do. I’ll have to pick your brains when the time comes for me! Really glad you shared this with us, Robyn, and it’s given me some pointers for the future. 🙂
Great job, Alli on getting all of your studying and work done! I am glad you are able to take a break until October. I hope you have a nice time relaxing away from schoolwork. Thank you! We talk about autism and behaviors in the house, and we alert others about Declan so they have more of an understanding but I never knew what had resonated with Declan, or what autism meant to him. It was good to have the “talk” and help him start having more self-awareness. 🙂
Oh, thank goodness the game came. Whew!
Sad that autism and brain damage were back to back. Sad and infuriating!
You’ve SO got this! 💪
I don’t know if Ben will ever ask. He’s surrounded by autistic peers at his school and just family at home. We talk about autism all the time in regular conversations. Just like we talk about ADHD, and what to make for dinner and everything else.🤷🏼♀️
Oh my gosh, that was a tough 24 hours 🙂 I know! Hearing those two questions together made me really wonder what sparked the conversation. But I am glad that he asked and now he knows the difference.
Thank you!
I never knew what Declan was picking up on when talked about autism. He was diagnosed so young when he really wasn’t aware of much. And I never really knew, at the time especially, how much self-awareness he was going to have. I began to realize he was going to start realizing some things were different for him, but I thought another school peer would point it out or ask questions which would make Declan see some differences. But hey – he asked me this way and I am glad we had the “talk” 🙂
Well, Ben has heard your perfect explanation too. I was talking Daughter about it on the drive home. I guess a coworker at the new job has an autistic son. So it came up while we were discussing her day.
Ben is always listening… except when he’s ignoring us😉🤦♀️
Does Atari come with Asteroids? I love that game. But pong? I can’t imagine a kid in 2020 playing that. It’s a blessing that Declan became aware of his autism before he had any preconceived biases. Having the ‘talk’ with a high schooler was tough. Still is.
It does! I think the pong thing came from the numerous YouTube videos Declan has watched about games and gaming systems at this point. I am sure he already had (someone else’s) an opinion on it before he even played it. Oh, wow, yeah – him asking now is a blessing. I honestly thought a school peer would have pointed out or asked why Declan had services (which Declan never even realized only he had) and that would be hard because Declan doesn’t want to be seen as “different.” He seems to have taken it all well and I am glad he asked.
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Thank you!
Thank you for sharing this very touching moment with us, Robyn. Declan sounds like such an amazing kid and the way you responded to him was perfect – honest but empathetic. I love that you emphasized all the special things that he can do. He asked such smart and insightful questions – while still navigating his Super Mario Brothers! I hope the conversation brought some relief to you that it happened. 🙂
Thank you! It did and I am glad he asked. I am not sure how it hit his brain to ask me, but I am glad he did. I wanted to focus on the positive and I wonder if he will ever want to know why somethings, like socializing, are so hard for him. I guess we’ll get there one day! 🙂
You most certainly will. You took the first step yesterday. 😊 Weekend is almost here. Enjoy the rest of your week and hope D continues to enjoy his gaming.
What a beautiful way to explain autism to your son. Being open and honest is always the best way. xxx
Thank you!
You did a fantastic job of explaining! I also find it very cool that your children feel safe asking you difficult questions.
Thank you!!
Great job Robyn. You are so right about back of the head conversations. I learned so much about what was happening in my kid’s life when they chatted with friends in the back seat. Remaining calm and behind Declan probably helped the conversation. I wonder what Declan would have said if, somewhere during the conversation, you asked him why he brought it up or where he heard about brain damage. He must have thought there is a connection and I wonder if he might still think that.
Thank you! I might try and explore that one with him when I think he is in the right mindset. I wonder where he heard that connection? Be good to know.