My son is a bright young man. He is funny with a dry sense of humor. He has artistic talent and he is a good brother. He is twenty years old with a great job working in the ER at the local hospital.
He also has autism.
Does he know?
I ask myself this question from time to time. Does Taylor know he has autism? He knows he is different and that there are things he may never get to experience, like have a group of friends, driving a car at 16 or, most recently, moving away to college. Does he understand why?
When he was eight years-old, something remarkable happened between the two of us. At the time, Taylor was still struggling to communicate with his words. He had such a hard time articulating his thoughts and feelings. If something upset him, he was unable to tell us why or even what it was.
This was one of those days…at first.
It was a lazy summer morning and his younger two brothers, Brendan and Jordan, had been watching the Cartoon Network. Taylor had no interest in watching with them so he stayed in his room drawing with his computer.
As the morning went on, Taylor would come out of his room and just yell at his brothers and start crying. I had no idea what was going on and it seemed very sporadic. His brothers weren’t bothering him but something clearly was. I would turn down the TV, sit with him for a little bit and calm him down. As it continued to happened, he started to cry and it finally progressed into a full blown meltdown.
I have mentioned before that being a parent of a child with autism feels like being part detective. This was one of those instances. I was struggling here. What in the world was upsetting him?
My other two boys were watching “Fairly Odd Parents” and it seemed like every time the dad came on and began to talk, it would set Taylor off. I finally realized that it was the dad’s voice that was upsetting him. I had no idea why that would be, but it was definitely the culprit. We changed the cartoon to something else and Taylor instantly calmed.
Crisis averted, I felt pretty great that I had figured out the problem. Go me!
About 20 minutes later, Taylor walked into my bedroom, looked at me and said “I need a new brain.”
For a moment, I just stood there looking at him. My child had just rendered me speechless. First, in the most perfect sentence, he spoke directly to me and told me what he was thinking. After the initial shock of that little miracle, the impact of the sentence struck me numb.
This was the moment that I knew Taylor understood he was different. What made my heart break and threatened my tears to flow, was that it was obvious he didn’t want to be different…he wanted a “new brain”.
Coincidentally, the week before I had picked up an issue of “TIME” magazine in which they had published an article about the differences between the brains of autistic individuals and typical individuals, complete with CAT scans. I still had this magazine somewhere and at that moment I knew that Taylor needed to see it.
I told him that I had something to show him and so I dug out the magazine and we sat down together in our overstuffed chair. He seemed as eager as if I was going to read him his favorite Dr. Suess book.
Opening the magazine, I said “Taylor, you do not need a new brain. Your brain is just different and it works in an amazing way.”
Taylor replied in his sweet little voice, “Well, let’s see.” and began looking at the pages.
Once again, I was speechless. We were having a conversation! I had to hide my tears or I knew the magical moment would be gone.
So we began to read the article. I don’t know how much of what I read to him he really understood but he was completely enthralled with the CAT scans images.The CAT scans showed what parts of the brain lit up in response to different stimulants, such as seeing a familiar face or seeing something scary. I simplified it very much and I explained it to him, saying “This brain is what your brothers brain looks like and this one over here is what yours looks like. See the colors? The three of you have all those colors, but yours are just in different places than your brothers.”
Completely satisfied, he closed the magazine, hopped up and went back to his room. The moment was over and he was suddenly in a great mood again.
Did we just have a break through? I sat there for a long time filled with a whole range of emotions and a whole lot of hope.
Needless to say, Taylor was still Taylor and he continued to progress at the same rate he had been, but for that 20 minutes as we looked at that magazine together, I knew that Taylor understood a lot more than I realized.
Did he understand it was autism that made him different? Did he know he had autism?
As he grew older, he would still have those moments. Moments where he understood he wasn’t the “same” as his peers.
It was hard watching him realize that he didn’t have the friendships his brothers had as he watched them walk out the door to go to sleepovers or parties.
I am blessed, my younger two boys have never treated Taylor as anything other than their big brother. I don’t think they realize how special they are or how thoughtful. A great example is how they handled the sleepovers. Most of the time, they would invite their friends over here, and while Taylor may not have “hung out” with them while they were here, he still felt like he was a part of them. He felt included in the way that only Taylor can feel included.
Did Taylor understand it was his autism that made it harder for him to make friends? Did he know?
When Taylor graduated from high school, we went through this once again. He watched his friends move off to college and it was so apparent he wanted to do that as well. Not school, mind you, Taylor was done with that! School was hard for him and he was happy to graduate. No, it was starting the next journey that he realized he was missing out on.
His friend since they were born (as Taylor told me one day), Rebecca, had been accepted to Auburn and Taylor came home one day and informed me that he and Rebecca were getting an apartment together and would live in Auburn. (Rebecca was pretty surprised to hear this too, but she thought it was really sweet)
I said, “Taylor, you said you didn’t want to go to college.”
His reply, “You don’t have to go to college to live in Auburn.”
Touché my son!
Did Taylor really believe he was getting an apartment with his friend in Auburn? I don’t think so. I think he was just enjoying his dream out loud. A dream to be normal and to be able to do the same things as his friends.
Did he understand it was because he has autism that this opportunity will most likely never happen for him? Did he know?
Recently, Taylor has been very concerned that we are already close to the end of this year. He has said many times, “I can’t believe it’s almost September!” or “Can you believe that 2018 is almost here?!”
My husband and I began to realize that this wasn’t just your, “wow, time flies” kind of comment. Taylor wasn’t just trying to make conversation. That’s not really Taylor. No, Taylor was really becoming stressed about the year 2018.
Last year, I know that right before he turned twenty, he became really stressed. He told me he wasn’t ready to be twenty. One day he asked me if he would go to heaven when he died. He was already thinking about how he would be old and die one day.
“Holy crap!” I thought. He was really, really concerned about turning twenty!
My husband and I had a suspicion of what may be on his mind and sat him down one day. We asked him if he was nervous about turning twenty and he vigorously nodded his head, yes.
“I have butterflies,” he told us.
I asked, “Are you nervous because you are going to be a grown up?”
“Yes,” he replied.
My husband said, “Taylor, you know you can live with me and mom for as long as you want to. You don’t have to move away. You can be a grown up and still live with us, okay?”
Suddenly the tension seemed to melt from him and he was okay again.
This time was a lot like that.
The thing is we had already told Taylor he could always live with us, but I thought, maybe I need to remind him. I would also remind him of the fun things we were going to do in 2018 as well. Let him know 2018 was something to look forward to.
So, as I was driving him to work the next morning, I broached the subject. I reminded him he never had to move away and he told me he already knew that.
Then I asked him, “Are you nervous about it being 2018?”
“Yes,” he said, “I have butterflies.”
So I told him, “We are going to do fun things in 2018, right? Tell me what we are going to do.”
He said, “We are going on a Disney Cruise.”
I said, “That’s right!”
Then he said, “And then Brendan is going to move away.”
What an idiot I am. How could I have not thought about that?
His brother has been looking at colleges for the past 6 months and in just a few more months will be graduating from high school and going off to college.
When I moved away for college, my sister was all “Bye Felicia!” so maybe that is why I never thought about how Brendan moving away would affect his brothers, especially Taylor. That doesn’t mean I shouldn’t have thought about it.
There went my “Mom of the Year” award.
This is going to be really hard for Taylor and it is going to shake his world. Brendan moving away will mean a lot of things. First and foremost will be that Taylor’s order, routine and normality will shift around. Big time!
It will also be another reminder to Taylor that once again, he is being left behind.That once again he is different and will not be able to have that same experience.
It breaks my heart.
Does he understand it is because of his autism? Does he know? Does he understand?
I think the real question is, does it really matter? It doesn’t change how Taylor feels.
I know that Taylor will adjust as he always does. It will take some time, but he will overcome it. He will continue to surpass all the expectations even as he takes the knocks and blows that life has and will deal him.
In this way, Taylor is just like everyone else.
He may not face the same stresses and challenges we all have in life, but he has them.
He has all the colors, just in different places and he will succeed in all those different places.
I know he will.