Autism and Creativity

The night was winding down. Dishes were washed, showers were taken, lunches were made (we shower and pack lunches the night before), and homework was checked. I walked back through the house, ready to return to working in my office, and I did my nightly perimeter check, shutting off lights and checking doors. A bunch of Lego and string cheese wrappers greeted me in the living room.

“Nigel,” I said as I walked by his room, “why haven’t you picked up your stuff in the living room yet?”

His response: “Can’t you see I’m making a Chimera?”

Some of you may recall about two months ago when Nigel removed the stuffing of several of his stuffed animals and collected the stuffing in a bag with the plan of making something else at a later date. I figured that this bag of stuffing, like many of his well-intentioned projects, would sit around forever and nothing would actually ever come of it. Over Winter Break, while he was at his dad’s house, I considered getting rid of it before he spread it all over the floor. His room is messy enough already. But for some reason I didn’t throw out the bag of stuffing.

And as I entered his room that night to try to ascertain what the hell he was doing, I saw the bag of stuffing on the floor, and the stuffing was profusely billowing out of it. Nigel was on his bed with one of his stuffed animal carcasses in one hand and a threaded needle in the other. He was sewing.

Nigel has done some sewing before, since a few years ago I taught him how to sew his Boy Scout patches onto his uniform. He has also sewn “bear hands” (gloves made from a previously stuffed bear) of his own design, and a few other minor projects. But his Chimera was quite an undertaking. He combined the body of a lion with a wolf’s head coming out of the back and an eagle’s head coming out of the chest, sewed them together, and then restuffed the body. A close look at the finished creature:

 And the proud creator:

Maddy, I’m sending him your way.

Wing Check

I remember the public library near my home where I grew up – in a suburb twenty miles east of Los Angeles. I felt comfortable there, surrounded by books and like-minded people. I loved to go there, whether it was to find a cozy novel or to do research for a report or essay (definitely pre-Internet). When I was fourteen, my parents would drop me off with instructions to be standing out front for pick-up in an hour, which always went by too fast.

I still love libraries, especially small ones like the one I grew up with and the one in the small southern Oregon town in which I currently reside. Once every two weeks, Nigel and I walk the third-of-a-mile distance from our home to the library. I read magazines while he peruses the juvenile shelves for his favorite book series, Eyewitness, covering topics as varied as the Civil War, Ancient Greece, pirates, knights, and everything in between. After a half an hour, he has made his selections, and we check them out via the self-checkout (which he loves), and then we walk home. Often, since it is a small library, we need to request certain books through the inter-library loan service, and that is what Nigel did last week for the book The Neverending Story. And they called today to let us know that it had arrived.

I was busy working, trying to meet a deadline, and of course Nigel had to get his book right then. I thought for a second. He is fourteen, he can communicate, and he wants to be independent. He can do this, I thought. I took a deep breath and the words came out as I exhaled: “Would you like to walk to the library to get it yourself?”

“I can go,” he said, some excitement in his voice. “I know how to get there. I can get the book myself.” He quickly went to put on his shoes and jacket, as if worried that I would change my mind. “I’ll watch for cars,” he added.

I opened the front door for him as he left. “Be careful,” I said. “And come right back after you get the book.” I checked the clock and allotted enough time for him to walk there and back, added a few extra minutes for distraction, and noted what time I should start to worry if he wasn’t back yet. Ha! Start to worry. Like I wasn’t going to worry the entire time he was gone.

A minute after he left, some idiot on a scooter sped down our 25-mile-per-hour residential street, and I worried about Nigel reacting to the sound, or worse, not getting out of the way fast enough. I worried about him crossing the busier street that the library is on, I worried about someone luring him into their house. I worried about him darting away from bees and other flying insects, I worried about him leaving his library card at the library and having to go back for it (which has happened before, even when I was with him).

But these are the baby steps we must take. I would love for my son to at least have a semi-independent life, and I must start fostering that. I must let go a little. I have to trust. I’ve laid the groundwork, and now it’s time for him to test his wings a little. And it’s time for me to let him. I just hope that the idiot on the scooter is long gone when Nigel makes his way back to the nest.

It was silly of me to think that I could focus on my work while Nigel was gone. He has gone out on his own before, for bike rides around the neighborhood or to go to a friend’s house, and I worried those times, too. I don’t suppose it will get any easier, especially as he gets older and wants to do even more things independently. And I know that this is something all parents go through to a degree, especially since I have a younger, non-autistic child and go through it with him. But it is different – they are different.  They have coping tools and social skills to see them through many situations that Nigel does not, making him far more vulnerable. But I can’t deprive him of the satisfaction of walking to the library himself to check out a book if he is able to. And I believe that he is.

Right on time, actually early, he walks through the door, book in hand and library card in pocket. “Everything go okay?” I ask. “Fine,” he says, and shows me the book. It’s probably the same exchange that took place with my parents when they picked me up at the library all those years ago. And it feels just as good, all these years later.

Couch Surfing

It’s been a long time since I’ve purchased any new furniture. But our old couch, a fourth-generation hand-me-down, was down to threads. The middle sagged like my, um – well, it just sagged. And even the slipcover that I’d had on it for the past five years was worn and faded. It was time for a new couch.

So, after much searching in stores and trying to budget for a brand new one, I found on Craig’s List a beautiful, gently used leather sectional that I love. It’s the same shape as our old one, just a few inches longer on each side. And the price couldn’t be beat. I was so excited about it!

Then I remembered – I had better prepare Nigel. Even little transitions like a new piece of furniture are sometimes difficult for him to assimilate. I announced that we would be getting a new couch soon and showed him the photos of it that had been posted on Craig’s List. I pointed out that it was similar in size and shape to the old couch, just different material. I mentioned that I wouldn’t constantly be nagging about the slipcover getting messed up because we wouldn’t need a slipcover. Nigel, not caring in the least about the slipcover, started in with the questioning. Why do we need a new couch? Why can’t we just keep the old one in the game room? Why do we have to get rid of it?

I couldn’t expect him to understand that because the old couch had belonged to an ex-boyfriend, I really didn’t want to keep it any longer. So I tried to come up with other compelling reasons, but Nigel held his ground. He didn’t want to get rid of the old couch because he had fond memories of watching movies with the ex-boyfriend. I knew then that the only way out of this conundrum would be gradual. He needed time – time to bond with the new couch and time to let go of the old one.

Since Nigel is a kinesthetic learner, I figured that one way of helping him to process the new couch would be to have him help with moving it. I brought him with me to go pick it up from the seller’s house, and he enjoyed helping to carry it out and load it on the truck. When we got to our house, he helped to unload it and bring it in. And then he would have nothing to do with it.

I had pushed the old couch to the back of the room, and that is the one that he sat on. “I have to say goodbye to it,” he told me. And I knew that he would need time to do that, so I scheduled the pick-up for the old couch the following week.  He sat on it for about an hour, and he insisted on eating his dinner while seated on it. “I have a lot of memories with this couch,” he said wistfully. “Yes, honey. We all do,” I confirmed. Then I had an idea.

“I think tonight we should have our first memory with the new couch. And the old couch will still be here, so it can be the last memory with the old couch, okay? Let’s all watch a movie together tonight. Nigel, you can choose what we watch.”

So that night we watched Indiana Jones and the Last Crusade, and Nigel split his viewing time between the old couch and the new couch, doing in-home couch surfing. At the end of the movie, I asked him what he thought of the new couch. He mulled it over before answering, and then he said, “Well, I would like it better if it had a fabric cover.” Ah! A sensory issue! I should have thought of that! I suggested that he could cover his side of the couch with a sheet until he gets used to the leather. “But it’s not so bad,” he conceded. “I don’t mind it.”

And that’s how we roll – one couch-surfing transition at a time.

Autism and the Dentist

I’ve unfortunately been having some dental work done this week – on myself. And as much as I would rather not be doing it, I’m glad that I’m the one, and not Nigel. As I sat there in the chair this morning, getting my mouth shot up with novocaine and then having my teeth drilled, I wondered how he would handle it.

I brushed Nigel’s teeth for him until he was six or seven years old. I just didn’t want to risk having him brush his own teeth poorly and getting cavities, which would mean having to take him to the dentist.  He used to get upset by lawn mowers and leaf blowers that he could hear from three blocks away, so how on earth could he stand a dentist’s drill in his mouth? He shrieked whenever I would try to trim his hair with scissors (because clippers were out of the question), so naturally I dreaded having to take him to the dentist. I figured that if I brushed his teeth for him, he wouldn’t get cavities.

So, when he was seven, I had him start brushing his own teeth, because it was time. After about two years of him doing it himself, I noticed that his sound sensitivities seemed to be waning, and I thought that it was probably high time that he saw a dentist and had his teeth checked. I prepared him with social stories, played dentist with him, and promised a reward after the appointment. He seemed ready. I stayed with him the entire time, of course, and notified the dental office ahead of time that he had autism. They were very accommodating, letting Nigel touch the instruments before they placed them in his mouth. I felt like I was holding my breath the entire time, hoping that nothing would upset him. Drills were going in other rooms, and he reacted to them and seemed a little nervous, but I assured him that they wouldn’t be using those on him that day. I was so glad that he was able to filter out the sounds and remain seated in the chair.

And, in fact, he’s never had to have his teeth drilled. Not that day, not ever. Nigel has never had a single cavity, thank God. He’s never had to be restrained to receive shots in his mouth, and he’s never had to try to sit calmly while someone drilled his teeth. I suspect that many autistic kids have had to be sedated to have dental work done on them, and I wonder if Nigel will need that at some point. But we’ll keep our digits crossed – he’s been to the dentist every year for the past five years, and no cavities. I find that fact astounding considering that he barely has the toothbrush in his mouth for thirty seconds and won’t do it at all unless I remind him.

I go in next week for my last bit of work, and then I’m done – with any luck, for good. Maybe I should just start brushing my teeth for thirty seconds – it seems to work for some people in this house. And anyway, as Nigel says, “Who cares about hygiene?”

A Casual Observation

The Scene: Interior of a suburban family home. Errant pieces of Lego are scattered across the living room floor, along with various National Geographic magazines, empty bags of microwave popcorn, and small, jingly cat toys. A mother, reading a book, sits in the middle of the sectional couch. Her slippered feet are propped up on the coffee table. She is bundled up, wearing a jacket and knit hat, indicating that the home’s furnace is not working. Her teenage son, wearing a sweatshirt and knit Chullo hat, sits on the floor, focused on building his Lego creation. The younger son comes striding into the living room wearing shorts and a short-sleeved shirt.  The teenage son looks up and notices his brother.

Teenage son (deadpan voice):  Your seasonal clock is out of tick.

Nuance

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Nigel:  Mom, isn’t it strange? I love pumpkin pie but I don’t like pumpkin.

So often I take for granted my understanding of all the nuances of our culture, including aspects of our spoken communication. I know when someone is making a joke or being sarcastic, I know that sometimes when I make a brief comment or ask a rhetorical question that I usually won’t get a response, and I know that most people with typical hearing only use subtitles when watching foreign films.

My son’s autistic mind usually takes nothing for granted and makes no assumptions. If he makes a statement such as “This mixes my face” while looking into a disco ball, he will repeat the statement until someone acknowledges him. He does not take for granted that I’ve heard him, that I don’t know that he is expecting a response, or that I don’t have one for him. He doesn’t understand why no one is responding to him, so he repeats himself. He doesn’t mind repeating himself five times while I am formulating a response, especially when his statement is something as, um, unusual as “My brain is the size of twenty yellow lemons,” which he said at age eight. I had no idea where that came from.

That was also the year that he discovered that DVDs were better than VHS tapes because he could choose to watch them with subtitles so that he could keep the volume low and memorize the lines while reading them onscreen. One night, when I started watching a movie (without using subtitles), he asked, “Why you didn’t want it without words?” because he couldn’t imagine how I could deprive myself of this convenience. Growing out of clothing was also a difficult concept that year. When his briefs were getting too tighty-whitey and I had to purchase new ones, I forgot that I should have prepared him. He went to get dressed the next morning and stood there in front of his chest of drawers saying, “What about the 6 underwear?” since I had bought him size 8, and his old ones had been size 6. No assumptions.

Fast forward six years, and he is starting to make little assumptions. He realizes that just because he likes pumpkin pie, it doesn’t mean that he’s going to like pumpkin. (I assure him that many people fall into that category.) And he is learning to recognize sarcasm. A few weeks ago, a friend of the family was visiting on a day that Nigel was supposed to have cleaned his room. Since he hadn’t cleaned it, it looked like a bomb had gone off in there. Nigel was sitting on his bed reading when my friend poked his head in the doorway, surveyed the damage, and said, “It looks good in here.”

Nigel paused for a moment as if considering, and then he said, “I know you’re being sarcastic.”

In spite of the messy room, I was rather proud. And definitely amused.

I Heart Echolalia

practice

I’ve seen some great posts on echolalia around the blogosphere lately. One point in particular that I keep thinking about was from Maddy’s post, in which she mentioned that someone had found her blog by searching “methods to stop echolalia.” Yes, it can be annoying sometimes, and maybe completely random, but hey! Your child is talking. Do you get it? Why would you want to stop that?

I have written about Nigel’s language development through various stages of echolalia. Yes, there have been times in recent years when I have prompted him to use his own words instead of a memorized phrase to communicate, but that’s because I know that he now has the ability to do that, to use his own words. Echolalia is comforting to him, however, and he reverts to that in high-stress situations. And in those situations, it’s more important to help him to calm down than to stop the echolalia. I don’t tell him “You can use your own words” when he’s on the verge of a meltdown. But sometimes, when he’s calm and comfortable, I encourage him to rephrase whatever he’s saying. I’ll gently suggest, “You don’t need to say things from videos right now. Try to tell me in your own words.” And he does now, because he’s able to. But I would never want to take that part of him away completely. He’s said some really funny things because of his delayed echolalia (scripting)! It’s how he learned to talk, and for that reason, I’m sentimental about it.

Why on earth, when a brave child is venturing into the speaking realm, would someone want to stop echolalia? Let them do it! Let them practice! When someone is learning to play the piano, there is a lot of bothersome plinking and plunking going on, usually on a daily basis. But after a long time of that, a song emerges, sometimes one that they have composed themselves. And there will still be plenty more plunking and plinking as the years go by. But also – we hope – more songs.

To Med or Not to Med

The term “self-medicate” has a negative connotation.  It makes me think of alcoholics or drug addicts, both prescription and illegal. Yet, taken literally, the two words simply mean to administer medicine to oneself. Or to want to.

Nigel and I saw his doctor – his psychiatrist – today. He goes in every couple of months for his “med-management” appointment. He doesn’t like these appointments because he doesn’t like answering questions about himself (really, he only likes answering questions about Indiana Jones, or Lego, or the JFK assassination, or either of the World Wars). And even though I prepared him ahead of time, reminding him that the doctor is required to ask these questions and that he could write the answers down if he didn’t want to say them (“Why would I want to write anything, which would cause pain to my hand?!!”), he still got impatient with the questions and often sneered his answers. Or instead of actual answers, he would sneer – in reply to “How would you rate your mood today?” – “Same as it was last time!!”

This level of verbal hostility probably encouraged the doctor to nod in agreement when I indicated to her Nigel’s desire for some medication that would help him to not blow up at certain peers of his who think that it’s fun to antagonize him. He wants something to control his tendency to respond in anger because he wants to go back to being mainstreamed. And he knows that that is his most difficult hurdle. Not because anyone told him, but because he actually has the self-awareness to see it. Yet, he does not have the ability to control his reactions to people when they upset him. So, he wants medication. He knows that medication helped him to stop habitually pulling out his hair and eating it, so he figures that medication can help with his behavioral issues. He wants to self-medicate.

And I had done my research and knew what the doctor would suggest: antipsychotics. There’s another negative connotation. Is that really what he needs? Are the occasional times that he blows up worth putting him on a daily medication with significant side effects? I asked him, there in the doctor’s office, gently, “I know that some of the kids bothered you every day, but did you respond with anger every day?”

“Yes. Every day.”

I took a deep breath and tried to let what he’d said sink in. It was too difficult to imagine, again, what he went through at school, day after day, and to think that in spite of that, he still wants to go back. He wants to be like everybody else.  It means that much to him. But I still wasn’t ready to say yes to antipsychotics. So I suggested that he try behavioral therapy to learn different responses when his peers anger him.

“I don’t want to see more psychiatrists,” he said, right there in the doctor’s office. “They’ll do the same kind of treatment!”

His psychiatrist smirked as she wrote that down. I asked, “What kind of treatment are you expecting from the psychiatrists?”

“Asking me questions!” And, of course, the psychiatrist politely laughed.

But the issue was still hanging over my head. He wants to change his behavior but he can’t handle therapy sessions. So, the doctor went and got several pages’ worth of printed material for me on the two medications she suggested as possibilities (Risperdal and Abilify). She gave me her cell number if I wanted to discuss anything with her. And I left feeling just as unsure and melancholic as when I’d arrived.

Right now Nigel is sitting on the couch in the living room, watching The Never-Ending Story III, which he was excited to rent tonight. Most of the time, I hear the faint sounds of the TV, which he keeps at a low volume, but once in a while he makes stim-type sounds or repeats one of the lines of the movie. He is happy; he is doing his thing. And he is not on antipsychotics. I wish it could always be that way.

Sense of Humor Intact

Nigel is now completely well. Generally, we don’t stay down long, but the reasons that I know for certain that he’s well are the following:

a) He is playing with Lego in the living room

b) When I ask him, before dinner, to pick up the Lego, he says this to me—

“Are you developing a sense of humor or am I going deaf?”

Granted, this is probably a line from a movie that I haven’t seen or don’t remember, but still. He’s definitely not sick anymore.

Sick Bay

That nasty stomach-bug thing that’s been going around has made its way to our house. Right before bed last night, Nigel ran to the bathroom to throw up. I thought at first that it was because (I’d discovered) he drank way too much soda that afternoon and evening while I was working in my office. But typically if his stomach’s upset for that reason, it’s a one-time elimination deal. And, unfortunately, Nigel’s trips to the bathroom occurred several more times throughout the night.

Usually, he makes it on time, but at one point in the wee hours, I heard him (the sound at which all parents groan) and went to check on him. It wasn’t pretty. I cleaned him up, got him back in bed and reminded him about using the old pot that I’d put by his side for the next episode, and then cleaned up the carpeted hallway, the bathroom door, sink, mirror, and floor. I didn’t even want to know what time it was.

Nigel has always been a trooper when it comes to being sick. Even as a young child it didn’t seem to faze him. He never whined about being sick – he just took it. He’s still the same way. And he loves saltine crackers, which I only buy when the kids are sick. I think it’s like a consolation prize in his mind – he requested the saltine crackers moments after he vomited his entire dinner. Not yet, I told him. Your stomach needs to rest. I’ll get you some tomorrow. And he accepted that. His stomach probably made him sense that it was best to wait.

Fortunately, though, our family doesn’t get sick much, especially in recent years. Two and a half years ago, we started eating organic food. Not everything – in fact, probably about half of the food we consume is organic – the stuff that we eat every day. But it really makes a difference in our health. In two and a half years, both boys have only been sick twice, and it was mild – over in two days. I’ve only been sick once, also mildly.

But still, even in my children’s teen years, I’m cleaning up puke. At some ungodly hour, no less. Afterward, I manage to get a little sleep. In the morning I get up and get Aidan off to school, check on Nigel, empty and clean out his used pot, wash my hands, and come in the office to work. Suddenly I hear retching sounds in the hallway right outside my office door. It’s one of the cats, about to yak on the carpet. I leap up from my desk and grab the poor thing, herding him into the bathroom and holding him over the linoleum. Then I clean that up, laughing at the fact that I have cleaned more puke in the last nine hours than I have in the past four years. I wash my hands for about the thirtieth time, put on my shoes and coat, and go out to buy non-organic saltine crackers. And maybe a new mop.