Monthly Archives: May 2008

Autism and Death

Nigel had a pet mouse for six months. It was the cutest little beige-colored furry thing. It was his own responsibility to feed him and change his bedding and water, which he faithfully did. Nigel named him Jonathan after Jonathan Brisby in The Secret of NIMH, one of his favorite movies and books. He told me that he held Jonathan every night for five minutes before going to sleep. One morning last week I noticed that Jonathan was curled up in a ball on the floor of his cage and not visibly breathing.

It has been interesting to me over the years to see the progression of Nigel’s acceptance of death. His first experience was at the age of nine, when our first cat, whom we all loved, was hit by a car a mere 50 feet from our house and instantly killed. Our neighbors called to let me know, and I brought the cat into our backyard. I went inside to tell Nigel and Aidan, who had very different reactions. Aidan began sobbing, and as I consoled him, Nigel became very angry and stormed out to the backyard. I hated to leave Aidan as he was, but I had an even worse feeling about Nigel’s state. I found him pulling his bike out of the shed, buckling his helmet (odd that he had remembered), and about ready to ride off, saying, “I’m going to find whoever killed Max and kill them for revenge!” After my initial shock over the length and complexity of his sentence, rare at that age, I somehow was able to diffuse his anger and help him let go of his need for revenge.

Several months later, Nigel and Aidan’s great-grandfather died. He lived a few hundred miles away, and they had only seen him twice, but they sure loved that man. I think Nigel internalized his sadness because he didn’t know how to deal with it. Sometimes now, three years later, he’ll come up to me an hour after his bedtime to say, “I keep thinking about my great-grandfather.” That’s good, I tell him. That way you’ll always remember him. But I’m sure that right now he would want you to get some sleep.

About two months ago, we had another cat die. He was a day-time roamer, but he always came home every evening. I think someone in the neighborhood got tired of him coming in their yard, trapped him, and dumped him on the other side of the highway that runs through town. I found him three weeks later, but he appeared to have been dead for just a week or so. He had been hit on the highway on his way back home to us, loyal cat that he was. So I brought him home to bury him, and Nigel calmly helped me. 

He tells me all the time that he misses that cat, but he has never indicated a desire for revenge, which I am glad to see. And even though I haven’t seen him cry about the death, I know he is dealing with the emotions surrounding it. Last month my father had surgery to remove a tumor, and when I told Nigel about it, he said, “Well, if he dies, just don’t tell me.” At first it sounded like he was being calloused, but I knew what he meant. He didn’t want to know about it because he didn’t want to feel the sadness again. And he knew it would be worse this time.

I am happy to report that my father came through surgery and is recovering very well. Jonathan the mouse, however, didn’t make it. And so, I tried to think of the best way to tell Nigel. I thought of saying, “Have you checked on Jonathan today?” or “I think something’s wrong with Jonathan,” but I settled on the more direct, “Nigel, I’m sorry to tell you this, but Jonathan died in his cage.” When I said it, Nigel stiffened; I could tell that it shocked him. But then he said, “Well, rodents have a short life span.” He went to go look at the mouse, and I asked him if he wanted to help bury him. “No. That would cause too much sadness.” So I did it myself, reflecting on his ability to identify his emotions and knowing what his limits are with how much he can handle. I think that’s pretty amazing. I wish I could have that outlook on my whole life.

Sibling Angst

Aidan

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 difficulty of him having a brother with special needs, it’s still there. And it always will be.

Siblings are the unsung heroes of the special needs realm. Parents, therapists, caregivers, and teachers are openly praised – and deservedly so – for all their efforts with those 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 and sleep through 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.

The Social Realm

In his quest for friendship, Nigel regularly requests sleep-overs. It took a while for him to accept the fact that he could only invite friends to spend the night at our house, as opposed to inviting himself to spend the night at friends’ houses. I think he now understands the way that works, after about three dozen reminders. So last weekend, he invited two brothers from one of the Scout families we know to spend the night, and I made some mental notes as I watched Nigel’s social development in action.

He spent most of the evening in echolalic mode, which worried me. He used echolalia as a tool to be social before he was functionally verbal, but we don’t usually see much of it these days. The exception to that is when he is stressed, which sometimes happens when he’s trying to make peers think that he’s just like them. What he was doing Friday night was not what I call stage 1 echolalia, which is parroting (repeating back what is said to him). He started off with that between the ages of 3 and 6, and moved on to what I call stage 2 echolalia, which is repeating random lines from videos he has watched. Stage 3 echolalia is repeating certain lines from videos and trying to fit them within the context of the situation. Stage 4 is taking those strategically used lines from videos and customizing them by inserting correct names and other details relevant to the situation. Nigel now mixes stage 4 with his own spontaneous speech on a daily basis. But occasionally, when stressed or unsure of himself socially, he reverts to stage 3 and even stage 2.

During dinner Friday night, he was so worked up that he was quoting random lines from the live-action Scooby-Doo movie. I think he was trying to make the kids laugh, because he could hear the movie in his head and it was making him laugh, and he was trying to share that with them. But by merely spouting the lines randomly, he only caused confusion for the boys. They were polite and accepting, but they didn’t know how to respond, and I could tell they were uncomfortable. So I had to poke my head in the room and try to steer the conversation to a different topic.

I aurally checked in a few minutes later, and Nigel was doing a little better. He had moved on to stage 3, and I overheard him say a line from Jurassic Park: “In 48 hours I’ll be accepting your apologies,” when his friend accidentally bumped him. By the time dinner was over, he was back to mostly employing his own speech, which I think occurred because the boys started talking about James Bond movies, which is Nigel’s Obsession of the Week. Aidan and the two guests were discussing the story about the painted girl in Goldfinger dying because her skin couldn’t breathe, and the fact that Mythbusters disproved it. (I smirked back in the kitchen and refrained from telling them about my college days, when a friend of mine did a photography project using models painted in all one color, and I was yellow. Suffocation was not a concern at that point.)

But the good part was that Nigel had calmed down enough to interact appropriately with his peers. How he was acting earlier made me think that he was probably like that at the middle school, and there was no adult around to moderate the conversation, so things just escalated to the point where an intolerant NT kid punched him in the face or told him to run laps around the field and laughed at him. It’s easy to see how he reverts to the stages of echolalia when he is over-socialized because it’s comfort behavior. It’s something that he knows. When some random kid at school is talking to him, he doesn’t know what to expect. So he starts playing a movie in his mind and starts verbalizing the lines that he’s hearing because he knows what comes next. And that is one of the reasons why mainstreaming won’t work right now. He still has a lot to figure out in the social realm. I certainly prompt him when I can, when I’m there, but most of it he’ll have to do on his own.