Monthly Archives: July 2008

Bored of the Rings

I love the Lord of the Rings movies, and so does my younger son, Aidan. We watch all three, marathon style, about twice a year. Aidan was around six when he first started watching them with me, and at first the Orcs bothered him a little, so he would hide his eyes when they came on. But he so enjoyed the rest of each of the movies that he put up with a little ugliness. And now, being a long-time gamer, he’s grown used to the Orcs. He loves the quest storyline and the main characters, especially Gollum, whom he tries to emulate in voice and action (only at home, much to my relief). He loves the sweeping cinematography and fantasy elements. He loves the ice cream we eat together while watching the DVDs.

But Nigel, movie lover that he is, has never shown more than a passing interest in the Lord of the Rings movies. I knew the Orcs bothered him too, but it was more than that. I think the whole fantasy element of those movies bores him. He only likes fictional characters that are in realistic settings, which is why he loves superhero movies. The Lord of the Rings, even though it was filmed in the natural world, is in a fantasy setting. That’s the only explanation I can come up with.

He has put in his two cents, though. The last time Aidan and I were out in the living room watching the trilogy, Nigel walked through on his way to the kitchen, stopped briefly behind the couch and said in his deadpan voice, “I think Frodo’s searching for inner peace.” Tolkien literary analysis, in a nutshell.

Then he went to snag some leftover pizza.

Time

Autistic individuals (especially younger) often have difficulty understanding the concept and sequence of time. Unless the sequence of events is tied together as a routine, some autistic people can have trouble recalling the steps of an event in the same order. This affects their ability to learn cause/effect and means/end relationships. It also makes it difficult to predict and prepare themselves for coming events. They need a visual reference.

Nigel loves lists and calendars to make sense of the vague concept of time, and he has the cognitive ability to use them. For instance, Nigel is the first one in the household to change the calendar on the morning of the first day of a new month, without fail. He has done this since he was about seven years old. I remember back in December 2001, I had noticed that in the two weeks since December began, Nigel seemed anxious whenever I showed him something on the calendar, even though he was very excited about Christmas coming. I couldn’t figure out what was bothering him about the calendar. The following week I brought home a 2002 calendar and showed it to Nigel. Instantly his face lit up and he said, “Now we have a calendar for January and February 2002!” I realized that he had been anxious because there was nothing for him to visually refer to after December for upcoming events.

Nigel then proceeded to flip through the calendar and write in his shaky but determined hand: “NO SCHOOL” on all the days that there was no school scheduled. I smiled, amused and relieved. Sometimes autism takes a back seat for a minute, and then he’s just a regular kid.

It’s Who You Know

Being a movie lover, Nigel considers himself lucky to have a father and stepmother who work in the movie industry. Through his father, he met Nicolas Cage (Raising Arizona and National Treasure get played a lot in our house) and watched him do an impromptu puppet show.  Nigel said he was very funny and nice.

Nigel has also been a long-time fan of Robin Williams. In fact, it was Mr. Williams’ performance as Genie in Aladdin that encouraged Nigel’s beginning communication through echolalia. Nigel went on to enjoy other Robin Williams movies, such as Popeye, Flubber, Hook, Toys, Mrs. Doubtfire, Robots, and Night at the Museum, which he has a poster of in his room. His all-time favorite, however, is Jumanji. So when his stepmother came home from work last week and announced that she was working on a film starring Robin Williams, Nigel, eyes wide, said, “Tell him I’m his biggest fan.” She did, and Mr. Williams, who has probably heard that a few times before, quipped, “Oh, did he take a poll?” and proceeded to personally autograph Nigel’s Jumanji DVD. When his stepmother brought it home for him, his dad said that Nigel’s eyes actually watered, and when I spoke to him about it on the phone today and asked Nigel how he felt to receive the autograph, he immediately said, “Ecstatic!” To me, that’s the best part about movies: helping autistic kids to try to communicate, and later, to identify their emotions. How great is that?

Spiderfan

Any kid who loves a movie character will probably want to write a fan letter, and Nigel is no different. After beginning with Tigger (“Dear Tigger, jumps note, Piglet and Pooh”), Nigel progressed in one year to write, at age seven, the following letter:

DEAR   PETER   PARKER

MAY    I    HAVE    THE   SPIDER-MAN    SUIT    PLEASE

YOU    CAN   VISIT   US   IN   OREGON

I   MISS   YOU   IN    NEW   YORK

YOUR   WEB   SHOOTERS   ARE   COOL

WHY   YOU   STOP   GREEN   GOBLIN

LOVE      NIGEL

He typed it on my computer one afternoon. I guess, not realizing that a sequel was in the works, Nigel figured that Peter Parker no longer needed the Spiderman suit now that the movie was filmed. And I guess Nigel thought that Green Goblin was pretty cool, too. Who can really know for sure what an autistic seven-year-old thinks? The number of words contained in this letter is far more than Nigel ever spoke at that age.  I remember being so glad that he had found a way to express himself, even if it was only about movies. At least they motivated him to write, and to communicate.

Learning to Write

As I had written in a previous post, I believed that once Nigel learned to write, that would “liberate him to no end.” Last night I came across a description I wrote seven years ago about Nigel learning to write:

Near the end of the year, Nigel began printing his name. Just a month before, he refused to hold any writing utensil, as he had been doing since age three when we first tried to get him to scribble; he seemed to have an aversion to holding pens, pencils, crayons, and markers. But now, at six, he has begun. Being a bit of a perfectionist, he gets very frustrated with himself because he has trouble making the letter G, both big and small. But he perseveres, and now, just three months later, he writes full sentences, short “letters,” even. (“Dear mom, Mom get string cheese, Love mom” – I’ve tried to tell him that he needs to say “Love, Nigel” on his letters so that the people know they’re from him, but I guess he thinks, Why wouldn’t you know who it was from? I just handed this to you, so you must know it’s from ME.)

He has also started drawing for the first time, which is fabulous. The first things he drew were little cars with smiley faces. I will always remember how happy I was when he started writing and drawing. The first night he did, he came to me and asked me to “write a letter to Tigger.” I told him I was washing dishes and I would do it as soon as I was finished. A few minutes later, I turned around and there he was at the kitchen table, hunched over a piece of paper, writing diligently, struggling with the Gs in Tigger. I looked over his shoulder just as he was finishing, and saw that he had written, “Dear Tigger, jumps note, Piglet and Pooh.” He put it in an envelope because he wanted to mail it to him.

Since then, Nigel has been writing and drawing every day. He went through a sign-making phase. He put up signs all over the house saying things like, “Warning: Do not let mom out of the house” on the back door, “No children allowed” inside the front door of Aaron’s [his father’s] house, “No smoking,” on Aaron’s closet door, “Reward: Do not let dogs out of the cage” on his and Aidan’s bedroom door, and several “Missing: Stuart Little” signs all over the living room when he couldn’t find his Stuart Little video. Currently, he has been drawing traffic lights and houses. He also recently drew an adult male lion and a lion cub, and when I asked him who it was, he said, “Simba and his dad.” I initially thought that Nigel’s writing and drawing would be a way to communicate his needs, but it has revealed more about his emotions and priorities than I ever would have imagined.

Adjusting

More from “Nigel At Six:”

We moved into a new house a few months ago. It’s on almost half an acre, with lots of trees and even a playhouse in the backyard. The boys really seem to like it; for the most part they’ve adjusted well to the change. The only difficulty Nigel’s had since we moved in happened about two months after we moved in when the landlord, without notifying us, had bark chips put in areas of the front yard as a landscaping element. I knew Nigel would initially have a problem with it, because it was new. I had just gotten home with the boys on a Saturday afternoon after they had spent the night at their father’s house. Nigel got out of the car and immediately began trampling the bark, shuffling and dragging his feet through it, sending it flying. Brian [my then-boyfriend] immediately started lecturing Nigel, not realizing that it was Nigel’s way of adjusting to something new. I tried to tell Brian that this was Nigel’s way of learning about something foreign (What is it? What is it doing there, when it wasn’t there the last time he was in the front yard?). I explained to Brian that Nigel’s anxiety level goes up when he doesn’t recognize something, especially in his own home. “Well, that doesn’t make it right for him to destroy something that somebody worked on all day,” Brian said, totally missing my point. Nigel could not understand that someone had spent time arranging the bark. He was just trying to assimilate it into his world the only way he knew how. I told Brian that probably tomorrow Nigel wouldn’t even touch the bark; it would no longer be foreign to him. (I was right.) The one thing Nigel could understand was that in dragging his feet through the bark, he had made a mess, and when I pointed that out to him, we got a broom and he helped sweep it up.

[Next I wrote about our experience with trying the GF/CF diet.]  . . . There may be supplements he can take to alleviate some of the symptoms (of autism), which of course I intend to look into as soon as I can. Sometimes I berate myself, thinking, why wait? Why not now, instead of writing this? Why not do everything I can to fight this? I don’t think I have an acceptable answer. There are many components of my answer. One part is because I’m so tired; I don’t want autism to run our lives (but if I just let it be, then it is running our lives, isn’t it? It might seem that way to some. But to me, when we’re at home, we function as a family at a near-normal level. Or at least, it feels nearly normal, and that’s good. It’s only in public that problems arise. So it’s almost easy to be comfortable with it in our daily lives). But mostly I don’t fight it because I seem to innately know that Nigel’s autism cannot be “cured,” at least not by current methods which seem to cure some types of autism. I know that Nigel will learn academically, and he will eventually learn about autism and how it affects him. In his daily life, he’ll work with it, and he will succeed on his own terms.

Seeing Sound

More development, more nostalgia:

Nigel turned six a month ago. Not an hour goes by that I don’t think about his disability. There are moments, yes, that I can just enjoy the life we do have, the accomplishments he has made, and for a moment convince myself that our lives are not defined by autism. I can usually find some time at home each day when I realize that we have all been functioning at our own version of normal, and everything is good. Even just for ten minutes.

But Nigel is learning and growing as I thought and hoped he would. I hope one day to converse with him on a level higher than “Would you like a sandwich or scrambled eggs for dinner?” But for now, the fact that he can answer me is wonderful. He rarely screams at home anymore.

This year Brian [my then-boyfriend] and I took the boys on their first camping trip. We went to the coast and got rained out, so we just drove until it stopped raining and ended up at a park/campground in Grants Pass. As we were unpacking the car, every minute or less we would hear the roar of some type of vehicle pass nearby. First I thought it might be low-flying planes, then I thought the campground was next to a freeway and that the noise was caused by trucks roaring by. But it was louder than that. The sound was invasive, jolting. Each time one would pass, Nigel would nearly go into convulsions of fear and sensory overload. This went on for about ten minutes, and I knew we would have to leave if it didn’t stop soon. I ran down a path through some thick bushes and came out on the banks of the Rogue River. About ten seconds later a speedboat roared by, followed by another. I went back and told Brian what was making the noise, and we figured it would be over soon. Apparently there was a race going on, called Boatnik. Brian thought the boys would like to go down to the river to see the boats, but I thought that would make it worse for them to be so close. I was wrong. As soon as Nigel saw what was making the noise, his fear was gone and he enjoyed watching the boats while covering his ears. He even joined Brian in cheering them on! His capacity to adjust to his disability truly amazes me.

Assessing Development

Development sometimes seems so elusive and immeasurable. When you’re with your child every day, it is often difficult to see any development. For me, it becomes more apparent when Nigel returns after visiting his father for seven weeks every summer. It is then that I notice changes in development. Some are subtle, such as a slight increase in speech, and some are more obvious, such as being two inches taller. Every year Nigel progresses, whether it is obvious or not.

I keep a file (several, actually) of his school records, IEP reports, and my own writing describing his development over the years. I have been looking through the files this week and am enjoying reading about his development, marveling at how far he has come. This is an excerpt from ‘Nigel at Six:’

I had intended to start writing this sooner. Pictures are not enough to remember these early years. Videos help immensely, but they do not capture thoughts and dreams, concerns and hopes.

All people change and grow, but I think I will spend my entire life learning about Nigel. Who is this little boy? Part genius, part tough, all loving. He has been with Child Development Center for two years now, and I can communicate with him levels above how I did when he started. He is a wondrous person, a gentle soul. Trusting, yet fearful of new situations. I can’t explain to him why he needs to sit at the table in restaurants and stay near me in the grocery store. Of course, I must remind myself that it has gotten better. He understands more of what I tell him, but too often I don’t  think of what to tell him until it is too late. Last time we tried to eat in a restaurant, he went up to some other patrons at their table, got right in their faces and proclaimed, “Balto!” because he had watched that video earlier in the day.

He is starting to use pronouns now, usually at home where he is comfortable, although he confuses which one to use when, “I” for “you” and vice versa. We are still hearing nonsensical words, words he uses when he’s trying to imitate a line from a video and he doesn’t know what was actually said. For example, in The Lion King when Simba tells Zazu “Hurry!” in an urgent voice, because he needed help. Nigel thought it was said in an angry voice, so whenever he’s angry, he yells, “Urr-reee!” and has for about two years now. Or he would say, also in anger, “It’s my gun, you’ve got no right to take it!” from the Swiss Family Robinson. Fortunately that was short-lived. Another good one was from the Scooby-Doo video. When Aidan split his chin open, we had to go to the doctor for stitches, and the regular doctor had just moved to a new location. So we got to the new office and were just about to walk in the front door when Nigel stopped and said, “I don’t like it,” as Shaggy had said when they were about to go into a haunted house. Nigel had used the phrase in perfect context as a way to indicate his fear about a new situation.

He’s even come up with some phrases on his own, emerging spontaneous, non-echolalic speech, which is wonderful. When I got back from a three-day trip to Paris, he emptied my backpack and filled it with his own shoes and clothes, put it on and walked around the room saying, “Nigel go to Paris. Nigel is tripping [meaning, going on a trip].” He has learned in school to comment whenever someone participates by saying, “Good catching,” “Good throwing,” “Good drawing,” “Good sitting down,” and when he can’t describe something specifically, he says, “Good job in doing,” which I love.

And the boy who taught himself to read at three and a half is sounding out words he doesn’t even know. Yes, it’s hyperlexia, but at least he shows cognitive strength in that. Unfortunately, he seems to have difficulty with holding pens – even fat ones – and trying to write. He is very resistant. He loves to watch other people write, but he freaks out if I try to put my hand over his to get him to do it. It’s a shame, because I think that once he learns to write, that will liberate him to no end.   

Beach Camp

It’s so quiet that it feels like the house is holding its breath. Today marks the half-way point of my sons’ summer visit with their father for seven weeks.  They return on August 1, and I am longing to hear their voices and footsteps fill the house again.

I remember when I was growing up in the seventies I would read books and see movies from the fifties and sixties about kids going away to camp for the summer. It was for much longer than one or two weeks; it was like, two months. Remember the original Parent Trap? They were gone for so long they were able to fool their parents when they got back! It just seems like that was the thing to do then – go to camp for the summer. I never did as a child. And although I wondered about it, I was glad that I didn’t have to go. I like the outdoors, but I would miss home. And what about the parents? Did they want to send their kids to camp, or did they do it because it was the socially acceptable thing to do? I try to imagine what that was like.

So I pretend that my boys are away at camp. They’re at Beach Camp. I just talked to them last night, and it sounds like that’s what they’re doing the most, what they enjoy – going to the beach. They both like to boogie-board, which is amazing to watch. I saw them do it when I visited them in LA three and four summers ago.  It is wonderful to watch your autistic child excel at something. It’s wonderful to watch any child excel at something, autistic or not, but there’s more gratitude concerning the autistic child. Because not too many years ago I wondered if mine would enjoy doing things like that, would enjoy anything other than watching Disney videos and lining up Hot Wheels cars end to end along the back of the couch and leaning his head to one side to stare at them. Yes, I am grateful that my autistic child has learned to boogie-board, and he likes it.

I have much to be grateful for. I think that is the key to getting through the next three and a half weeks of missing my sons. I’ll keep in mind all the things I appreciate about them, what makes them special as individuals. Just like the twins in The Parent Trap. Their parents were happy when they came home from camp, too. But at least I’m able to tell my kids apart!

Single Parenting with Autism

Even though recent reports put the divorce rate down to its lowest since 1970, I had read various quotes that the divorce rate when autism is involved is as high as 80%. I took a look around online and found a source which puts the rate at 85-90%! Scary and sad. Personally, I don’t believe that having an autistic child led my ex-husband and me to seek a divorce; there were plenty of other factors involved. But the fact remains that ten months out of the year, I am a sole parent (by that I mean that the other parent is only available by phone). And judging by the statistics, there are many other single autism parents out there as well. How do we do it?

The quick answer to that question is support. But there are several other elements that contribute to the successful single parenting of an autistic child. This is what I have learned:

1) You must have emotional support. Look first to your child’s other parent. A half-and-half joint custody arrangement may be too difficult for your autistic child to process, so be creative in your approach. But do try to plan for your child(ren) to spend some time with both parents each week so that the custodial parent can get a break and the non-custodial parent can spend some time with the child(ren). Do whatever you can to quickly get past any negativity with your ex-spouse. Not only will this be better for your child(ren), it will make things so much easier for you.  In the event that your ex-spouse lives far away or for other reasons cannot or will not be involved, you need other sources of support. Look to relatives and friends, and if you are truly isolated, you may want to consider relocating closer to those who can help you. If that’s not possible, look up respite care in your area.

2) You need time for yourself. This is why respite care is important if you do not have an ex-spouse or family and friends nearby. Giving yourself a break will help you to recharge and ultimately be a better parent. My time to rest and recharge is during the summer, when my sons are visiting their father in Los Angeles for seven weeks. Of course, I would rather have that broken up into smaller increments at more frequent times throughout the year, but it’s not possible. So, during the other ten months of the year, once in a while I have a family member or a friend from Nigel’s Scout troop watch him, Aidan goes to a friend’s house, and I take a much-needed break.

3) Try to organize your life. It really helps to get through the day, and the week, if your therapy appointments and errands are noted in one place, your keys and wallet/purse are always kept in the same place, and you schedule certain household tasks on certain days of the week. I plan out meals a week in advance and do my grocery shopping once a week. I started doing this about a year ago, and it makes that element of running a household so much easier, plus it’s healthier and it saves money. Two great sources for helping you to organize your life are The Simple Dollar and Real Simple Magazine.

4) Exercise when you can. This doesn’t mean you have to go to the gym, unless that’s the only thing that works for you and you have the means to do so. If your child can handle a walk around the block, get out and do that. If not, try doing yoga at home, and try getting your child(ren) to do it with you. Exercise is important not just for the physical health reasons, but also for emotional and mental health. It’s essential for stress release, something all autism parents need.

5) Cultivate (or develop) creative interests. Writing saves my sanity and helps me retain my sense of self. Anyone can benefit from having a creative pursuit, but for single parents, that outlet can become a lifeline of sorts. The best thing to do is to come up with something you can do at home, either with your child(ren) or while they are otherwise occupied (watching a video, for example). If you love to cook or bake, throw yourself into it: research recipes, try out new ones, or develop your own. Try getting into painting or drawing, photography, needlework or other craftwork, sewing, woodwork, designing, music, poetry, plants, gardening, computer programming, or anything you might be passionate about. It’s good for the soul, and it reminds you that there is more to your life than day-to-day life.