Teen Autism

The following uncensored conversation took place in our dining room tonight:

Nigel (seated at table): I don’t want hot dogs tonight. I want to choose what I want for dinner.

Aidan (seated at table): What’s with the whole wheat buns? You know I hate these.

Me (a few feet away in the kitchen): I have work to do tonight, so I made something quick for dinner. [I start grating cheese on the nachos I am throwing together making for myself. The boys are silent for a few minutes as they eat.]

Aidan: Stop staring at me!

Nigel (matter-of-factly): I’m going to say something to you. I’m making eye contact.

Aidan: Well you don’t have to look at me!

Nigel: I’m going to build a time machine and go back in time to stop JFK from being assassinated.

Aidan: Time machines don’t exist.

Nigel: I’m going to invent one.

Aidan: It won’t work.

Nigel: I’ll go back to November 22, 1963 . . .

Aidan: I don’t even care, Nigel.

Nigel:  . . . and I will save him.

Aidan: Stop staring at me!

Nigel: I’m making eye contact because I’m talking to you. It’s a social skill.

Me: Aidan, if he’s talking to you, it’s okay for him to look at you.

Aidan: Well, it’s rude! [He stands up and walks over to the kitchen counter where he deposits his dinner plate with the untouched wheat buns still on it and goes to his room. Nigel, meanwhile, continues laying out his plans for thwarting the JFK assassination.]

I take my nachos out of the oven and sit down next to Nigel, who has eaten his whole wheat buns. He tells me his ideas, like suggesting to JFK that he use a “decoy” in the car. I suggest having him re-route the motorcade. “That would make the assassins suspicious, Mom.” I suggest that an inflatable President in the car would as well. “It could be mechanized so it would wave.” All this time he is making perfectly appropriate eye contact with me. He is conversing. And I’m trying not to dwell on the fact that my other son stormed out of the room (thanks, puberty) yelling about the very thing that Nigel has so diligently been trying to accomplish.

Someday, we will all sit around this table at the same time, all with the same food, and we will converse, and we will not have accusations of staring and rudeness flying around. We will have mastered eye contact. And dinner. It will probably happen right around the time that Nigel invents his time machine.

When brothers join forces, you know it’s for a good cause.  

Poo-Chi, a Christmas gift circa 2000, has been dismembered. You can bet that if it had been something I would have cared about, they would have been much quieter while doing it.

(My apologies to whichever relative had purchased this for them, but Poo-Chi has barked his last.)

Aidan actually allowed Nigel to hang out in his room the other night. It took me a moment to get over the shock of that occurrence, which happens as frequently as snow falling in LA. Then I overheard their conversation while I was walking down the hallway and decided to monitor the event from behind Aidan’s closed door.

Aidan: Are you even going the right way?

Nigel: Yes.

Aidan: You have to be going THIS way.

[Clicking sounds emanate from the room. Mom thinks that they are playing video games, and then she hears this:]

Aidan: Oh, dang it. [Mom gives kudos to son for not cussing in the absence of parental unit.] Now we can’t do anything with the head. [Mom's eyes widen: What head?]

Nigel: At least we can do something with the ears.

[More clicking sounds, now accompanied by mechanical squeaking. Obviously not video game-related.]

Aidan: Okay, I’m just going to try to pry the plastic off now.

[Does Mom barge in at this point? No, it's too fascinating to eavesdrop on the kids.]

Nigel: This is the first time you’ve done any type of electronics with AI [Artificial Intelligence] in it.

Aidan: Actually no, I did some with K [Aidan's friend].

[More clicking.]

Aidan: Ah! There we go!

Nigel says something unintelligible.

Aidan: When I need help, I’ll ask you. Now go.

[Mom runs back down the hallway to her office.]

Nigel, exiting room: I’m going to watch Tommy Boy.

Aidan: I’ll call you if I need you.

Well, Mom thinks from the safety of her office, they’ve already taken apart the SpongeBob Magic 8-Ball, so it can’t be that.

What did they take apart? Tune in tomorrow for the answer to that and many other questions, like, how was Aidan’s first day of middle school? Will he figure out the combination locks for both of his lockers (PE and regular)? Will he get on the right bus to come home? And, most importantly, will he remember to give the required $5.00 to his homeroom teacher for additional school supplies? Or will he use it to buy soda and candy bars at the *wow* vending machines at school?!

We have been waist-deep in Birthday-Induced Toy Envy and Younger Brother Control Issues. Far be it for me to think that this problem might have abated by now, but apparently twelve- and thirteen-year-olds are just as susceptible. Only now they are bigger and hormonal. And they’re not embarrassed bickering in front of their friends.

For his birthday this past weekend, Aidan received a toy that has flown off the local toy store shelves: Transforming Wall-E. His father had purchased it a month earlier in LA and brought it up to Oregon for the party. Nigel fell in love with it, and Aidan exploited that by not letting Nigel hold it. This is difficult territory for me for several reasons.

I want Aidan to share, but I don’t want it to be forced.

He already accuses me of favoring Nigel.

Aidan himself is rather ND and I can’t expect commendable behavior from him in a sensory-overloaded situation (like a party).

Nigel can learn patience about getting to hold his brother’s new things, but I certainly can’t expect commendable behavior from him in the same sensory-overloaded situation.

So Nigel kept nagging and Aidan kept refusing and Nigel’s behavior was escalating, but I was distracted getting dinner ready for a bunch of adolescent boys and couldn’t intervene. Finally, I had them all sit at the kitchen table, hoping the pizza and root beer would be enough to distract Nigel, but it was too late. He was in meltdown mode, clenching his fists, gritting his teeth, and growling. “Nigel, relax and eat your pizza,” I calmly suggested. “RRRRRRAAAOORRRR!!!” he growled in the face of the boy seated next to him. Fortunately, I was nearby and was able to grab Nigel as he lunged at the poor boy (a wonderful NT friend who has witnessed Nigel’s meltdowns before and still agrees to come to our home). I managed to walk Nigel to his room as he growled, hissed, and clawed at me, his eyes wide with a combination of rage and fear. I reminded him that he needed to calm himself before he could finish eating and hang with his friends, and then I went back to the kitchen to apologize.

The friend whom Nigel had roared and lunged at asked if Nigel was okay, bless his compassionate heart. I thanked him for being so understanding. When I went to check on Nigel about fifteen minutes later, he had shredded a file folder, but he was de-escalating. I could tell he wanted to rejoin his friends because he was lying on the floor on his back, with most of his body outside of his bedroom door, and he was quietly talking to himself. Five minutes later, he was running around with his friends, laughing.

The next day, he came to me and asked if I would buy him his own Wall-E toy. I told him that he could use his allowance to buy it, but that all the local stores were sold out, so we would need to order it online. He flopped down on the chair in my office and said, “They’re like a flying pack of locusts, taking everything they can get! If only they could let me have a chance!” This was said with much more emotion than his usual flat tone. “Who?” I asked. “The store customers?” “Yes!” said my son, victim of consumerism.

And Aidan, I’m happy to say, finally relented. Last night, the three of us were relaxing on the couch watching a movie. Nigel diplomatically requested to hold Wall-E for “only a minute.” Aidan gave him three. And all was well in my little corner of the universe.

Nigel is at Scout camp this week with his dad, which is something they did last summer that they enjoyed. I’m glad that his father was able to do it again with him. It allows them to have some one-on-one time, and now Aidan can have some one-on-one time with me.

One-on-one can be an elusive (my euphemism for nearly impossible) concept for single parents, especially any whose other parent lives seven hundred miles away. But one-on-one time with parents is so important for kids. It makes them feel like a priority when their parents have carved out time for them, and it teaches them to do the same for people in their lives as they get older. In special needs families, the typically-developing children often feel like they are fending for themselves because their parents need to spend so much time tending to the needs of their sibling, going to therapy appointments, doing damage control. Often, the NT siblings take on some of the damage control themselves, or they take on more responsibility around the house. Aidan has on several occasions told me that he feels like the older brother, even though he’s younger. He’s had to explain his brother’s behavior many times to peers, and has done so with patience and respect. I have extolled his virtues and those of other siblings in a previous post, and I will continue to.

So this week is Aidan’s week. We are watching all six of the Star Wars movies, one each night, and today I rented a video game for him that he had a lot of fun with (Lego Indiana Jones). We bought a pint of raspberry sorbet for dessert, and we made plans to go river rafting on Saturday. As we sat on the couch tonight watching our movie (we’re on Episode 2), he leaned up against me and began gently, methodically scrunching handfuls of my hair in his palm. He has done this for years, I think as a bonding ritual that appeals to his tactile sensitivity. After a minute of doing so, he said, “I’m so happy to be able to squeeze your hair again, Mom.” I told him I’m glad he can do it again too. I’ve missed it, among many other things.

Aidan left Monday morning for four days at ROS (Resident Outdoor School) at a camp about an hour away in the mountains. Tonight they are having family night there, when all the parents and siblings are invited to the campfire program. As I dropped Aidan off at school Monday morning, I told him I’d see him Wednesday night for the program.

Aidan: Is it just you coming?

Me: No, Nigel’s coming, too. I don’t want to leave him alone that long when I’m not close enough to come home quickly if there’s a problem.

Aidan: Then don’t come at all! I don’t want Nigel there!

I didn’t want to force the issue. Aidan was probably looking forward to some time away from his brother, time when he didn’t have to think about how his brother was acting and how it might easily embarrass him. It must be hard to be eleven and to be concerned about that so often.

So I went home and got Nigel up for homeschool. I started to prepare breakfast.

Nigel: You took Aidan for ROS this morning?

Me: Yes. He’ll be back Thursday afternoon.

Nigel: Yes! Three and a half days without the pesky little brother!

Nigel then proceeded to somersault throughout the house in jubilation. So much for brotherly love. I suppose I should be glad that there are some things about his development that are entirely typical.

Aidan: Why the heck, Nigel, is your stick in my room?

I overheard Aidan say this last night as I was walking down the hall, and I empathized. I, too, have found Nigel’s sticks in many places throughout the house, including the kitchen, the living room, the car, my desk, and my bed. Nigel’s stick obsession has probably been lifelong, and to the best of my knowledge, neither he nor anyone around him has ever lost an eye, thank God. I’m not sure where this obsession stemmed from, but it’s most assuredly not abating any time soon. And I bet one of the things he loves about Scouts is being able to handle sticks on a regular basis.

But the real reason I’m writing this post tonight is to highlight Aidan. He’s been feeling a little like second fiddle lately, aware of all the writing I’ve been doing about Nigel on this site, even though I’m careful to minimize the screen when he (Aidan) comes in the room. He’s been pretty verbal about his feelings, too, accusing me of going easy on Nigel and not being fair, playing favorites. I try to spend as much alone-time with Aidan as possible, let him know how loved and important he is, but I can imagine it must be so hard for him. What’s not fair is that he’s the younger brother and he always feels like the older brother. What’s not fair is that as much as I try to ease the burden of him having an autistic brother, it’s still there. And it always will be.

Siblings are the unsung heroes of autism. Parents, therapists, caregivers, and teachers are openly praised - and deservedly so - for all their efforts with the autistic people they work with and care for. But the siblings are not often highlighted, and they should be. Some siblings have had to share a room for years and learned to tolerate the noises and habits of someone who doesn’t talk, or whose speech is echolalic. Some siblings have gone to the same school and had kids come up to them, many times, to say, “Did you hear what your brother did today?” And in spite of all that and so much more, they take it in stride and learn to love this person who seems so different and strange and often annoying. The siblings know that even if they’d like to poke their autistic brothers in the eye with the very sticks they leave in their rooms, it’s just another thing they’ll have to live with, and they do. Maybe not without exasperation, but with acceptance nonetheless.

Aidan, I’m so proud of you.

When I was in high school I had a good friend I’ll call Eddy. Eddy and I were in several of the same classes since freshman year, and by junior year, we had become pretty close. We never dated, but we talked a lot, and one day during class he ran out, visibly upset, and the teacher suggested I go check on him. I found him sitting on the steps of the side entrance of the building, and I sat next to him and gave him a hug. He told me that he was coming to terms with the fact that he was gay. He didn’t know how to tell anyone; he felt confused and a little scared. I assured him I would be there for him.

Months later, Eddy felt better and more sure of himself. His family had responded positively to the news and his friends supported him. He said that he couldn’t believe that it was happening to him. He had read and heard about people being gay, but until he acknowledged that he was, he never realized what it would be like, how it would affect him. He said that he felt like now he belonged to The Gay Club. And that it would determine the rest of his life.

I certainly didn’t feel it at first, but over the years I have come to realize that with my son’s diagnosis I was granted lifetime membership in what I call The Autism Club. I had read and heard about autism, but I had no idea what it was like until I came to live with it. I couldn’t believe it was happening to me. I never realized how it would affect me. It will continue to determine the rest of my life.

I’m sure it’s the same for any parent of a child with a disability. You start going to all the IEP meetings, the team meetings with therapists, the therapy appointments, dealing with trying to take your child out in public, finding a good fit with a program or school and changing frequently when it doesn’t fit. You come to terms with how the disability affects all the family members, now and in the future. You realize that your lives are going to be different than those of your neighbors, and even your friends. You wonder how it will affect your other child, having a special needs sibling.

So you go to the meetings, you do what you need to do, you give attention and show empathy to your other child, and somehow, as the years go by you realize that you are functioning, you are doing this. Life goes on. It’s different, it’s not how you thought it would be, not what you would have wished for yourself and your children, but it’s okay.

Some might think I’m trivializing the experience by calling it The Autism Club. It is in no way trivial, and I know that only too well. It affects every fiber of my being. But I have to keep reminding myself that there are millions of parents of autistic kids, all going through what I go through. And that makes me feel like we’re all part of some special club or association. We didn’t ask to join. But we’re making the best of it. And it’s good to know that we’re not alone.