Monthly Archives: October 2008

Taking a Bow

Yay – I’ve received another blog award, and it’s a pretty one!

Proximidade award

Approximate translation from Portugese: “This blog invests and believes, the proximity!” Closeness, maybe? Anyway, big thanks to Hellokittiemama, my advocacy hero at The BonBon Gazette, who has kindly bestowed this lovely award upon me. I am honored to pass it on. First, a required description:

“These blogs are exceedingly charming. These kind bloggers aim to find and be friends. They are not interested in prizes or self-aggrandizement. Our hope is that when the ribbons of these prizes are cut, even more friendships are propagated. Please give more attention to these writers! Deliver this award to eight bloggers who must choose eight more and include this cleverly-written text into the body of their award.”

And now, my picks:

Fearless Females, whose outlook and parenting wisdom I admire
Building Common Ground and A Panoptic Life, two insightful blogs with Aspie points of view
Alone Together and Café Autism, for hands-on parenting on the spectrum
AutismBlessingsChallenges and Dear Noah, two blogs that are new to me and will be visited often
Faces of Autism, Casdok’s inspired new blog showcasing some beautiful people, including Nigel!

Hats off to all!

Right on Schedule

The future will arrive when it’s ready. Whether it seems so or not, your life is right on schedule. –clipped from an old horoscope, author unknown

I have spent most of today thinking about the future, specifically, thinking about the subjects of yesterday’s post. I sat at my desk for an hour last night writing it, carefully wording what I meant to convey, not sure if I was doing it right. What I neglected to say was this: Even if Nigel doesn’t progress any further, even if he hadn’t progressed to the point where he is now, I would be fine with that. I hope for his progress, but not because I want him to change. I am so happy with him the way that he is, the way that he’s always been. I hope for his continued progress because it would open more doors for him. It would enable him to experience more of life, and that is what he wants, and I want that for him. We all dream for our children. Autism doesn’t put an end to that.

And so this morning, having been up late thinking about what I had written, obsessing about the future, I came and sat down at my desk, my big L-shaped desk with all my projects spread out all over it, and my framed family photos of my loved ones smiling at me, and my soothing candles and bamboo, and my eyes fell on that little quote I had taped to the bottom of my monitor. The future will arrive when it’s ready. I needed that reminder today more than I usually do.

Whether it seems so or not, your life is right on schedule. And so is Nigel’s.

The High Functioning Threshold

I recently came across this survey taken by one of my favorite sites for autism information, Natural Learning Concepts.

Over 5,000 people have been asked this question. The results of the poll are:

WHEN MY CHILD IS AN ADULT, HE/SHE WILL:

1. Live independently	8 Percent
2. Live independently but require minimal support	42 Percent
3. Live in a group home	14 Percent
4. My child will probably never leave home	36 Percent

These results intrigue me, and make me wonder two things. First of all, how old are the children of the parents surveyed? I know that my answer would vary depending on the age Nigel had been at the time I was asked. Between the ages of three and seven, I would have chosen #4, My child will probably never leave home. Between the ages of eight and thirteen, I would have chosen #3, Live in a group home. But now, as he nears fourteen, I might possibly choose #2, Live independently but require minimal support. Or, it might be #4 until his late twenties-mid thirties, and then #2. And then, as I look back at how far he’s come and dare to dream about how far he might be able to go, I wonder if the possibility exists that in a few years I could actually answer #1, Live independently. As the years have gone by, his functioning has gone from fairly low to moderate to fairly high. What if he continues to improve? What is his true potential?

And this brings me to my second question: At what point do we say that someone is high functioning? The definition is rather subjective. I have acquaintances who’ve said to me, “How wonderful that Nigel’s so high functioning!” But I think, if he were so high functioning, wouldn’t he be able to be mainstreamed? Wouldn’t he be able to make it through a typical school day? At this point, he talks HFA (high functioning autistic). His sensory issues, so severe in the past, are now at a manageable level. So how do we quantify our child’s level of functioning? Where is the high functioning threshold anyway? At what point do we know that our children have crossed it? And what does that mean for them and their future? Trying to make their way in this world that could easily take advantage of them? What does it mean for us, their parents?

Of course, if Nigel were still non-verbal or still had severe sensory issues, I would not be asking these questions. I would choose answer #3 or #4, as I would have when he was younger. I would still think about his future, of course, and mine. I would obsess about finding a good facility for him. I know that it would not be easier, because I had been in those shoes for several years. But it would be different. My concerns about my son’s future are different now than they were before he began reaching for the high functioning threshold, but no less worrisome, no less consuming.

And so, regardless of our children’s age, regardless of their functioning level, we all face the question posed by Natural Learning Concepts regarding our children’s future. We all wonder and worry. Some parents’ worries evolve and change, and some are unique to their own circumstances. But we all face the prospect of how autism will affect our children’s futures. We all have our own suitcases to carry. And whether we cross that threshold or whether we’re at the opposite end of the spectrum or somewhere in between, we still face this challenge. And that is no small feat.

Driving Force

I’m always looking for fun activities the whole family can enjoy that won’t aggravate my son’s sensory issues. So imagine my shock when it was discovered a few years ago that Nigel could actually handle game arcades. Not just the sounds of video games bleeping, but also louder shooting sounds, rolling skee-balls, flashing lights, and being jostled and bumped by strange people. Of course, this sensory processing ability occurred right around the time that he also became able to sit in restaurants. Something clicked and he was able to filter out the sensory issues that had previously been so agonizing for him. It was a relief for all of us. And it opened a lot of doors for activities in which he could participate.

Going to the local Family Fun Center turned out to be one of them. I was a bit nervous the first time I took him there, since the entrance takes you right through a noisy, bustling arcade, but I think my son’s excitement cancelled out any sensory issues he might have experienced. He also had his form-fitting fleece hooded jacket on, and that helped to muffle the sounds. It amazed me to see him handle all the stimulation. After some time in the arcade, I took him outside to the go-karts. He had previously been a passenger on other amusement-park driving rides, but he was tall enough at age eleven to drive his own car, and very excited to do it. As we approached the go-kart area, I coached him about not crashing into the other cars, and to keep going in the same direction. I had purposely arrived first thing in the morning, hoping that there would be fewer people driving at the same time, and I was glad to see that my plan worked. The attendant let us through the gate and told us to take two cars in the front. As soon as Nigel climbed into his car, he took off! He just pushed the accelerator pedal and off he went! The attendant started yelling after him to stop, but Nigel didn’t respond – he just kept going! I quickly informed the guy about Nigel’s autism and told him that this was Nigel’s first time driving and he didn’t know to wait. The guy seemed to understand. He waited for Nigel to finish the lap and then flagged him over so that he could put on his harness. Then he continued for the remainder of the allotted time with me following in my car. Nigel smiled and laughed the entire time. Not only that, he drove just fine.

That was three years ago. Nigel is practically a pro go-kart driver now. He knows to put on his harness and wait for the attendant to say when to start. He doesn’t crash into anyone. Furthermore, he even knows how to block other cars from passing him! We just went go-kart racing yesterday, and he beat me again! But the best part of all is how much he enjoys driving those go-karts. I loved being right behind him, seeing his huge smile every time we rounded a curve.

Four people to take one 6-minute go-kart ride: $24
Everyone, including Nigel, enjoying it: priceless.

When Disappointment Looms

The year that I was six, I was sick on my birthday, it rained when we went to Disneyland, and I didn’t get the Baby Alive doll for Christmas. That was disappointing. The year that I was twenty-six, I didn’t get a big job I applied for, my son was diagnosed with autism, and my then-husband announced that he wanted to be separated. All rather disappointing (at least at the time).

We all have our own ways of dealing with disappointment. Some indulge in retail therapy, some take a hot bath, some tell themselves that something wasn’t meant to be. Some get angry and frustrated, or sad. Some take it out on themselves. Disappointment is another emotion that autistic teens are faced with learning how to manage. Of course, all people must, but for someone who has trouble identifying and dealing with difficult emotions, it’s that much harder.

Nigel’s NT friend Riley was supposed to spend the night last night as a positive reinforcement for Nigel cleaning his room. He earned it, and he was really looking forward to it. Then Riley called to say that he hadn’t fully recovered from an illness yet and couldn’t make it. Nigel seemed okay at first and retained his composure on the phone, which impressed me, but afterward I could tell that he was definitely upset. He yanked his hair in his fists and shut himself in his room, where he proceeded to knock a bunch of stuff on the floor he had worked so hard to clean. “I cleaned my room for nothing,” he sneered.

After a few minutes, I went in and sat with him on his bed. I acknowledged his disappointment. Then I gently reminded him of the exercise he had recently done in his social skills workbook called When Plans Change. In it, he learned to create a visual image of changing the plan in his head by removing the old plan, represented by a Post-It note with “Old Plan” written on it and stuck to his forehead, and applying a new plan (a Post-It note with “New Plan” written on it). The new plan consisted of dinner out at his favorite Mexican restaurant, going out to get ice cream, and renting a movie of his choice. And the assurance that Riley would spend the night on a future weekend.

“New Plan” seemed to be an acceptable consolation prize, even though I could tell he was still having a tough time, still wishing his friend could be here. Last night he kept coming out of his room spouting random movie echolalia, which he usually does when stressed. Later, he started coming out of his room talking about bully revenge plans. I think he was displacing his disappointment about his friend not coming over onto a scapegoat of sorts, which seemed to help him. I was glad he found something that worked. Whatever way it rains on our proverbial parades, we all learn to deal with disappointment, whether it’s by doing something to make ourselves feel better or by visualizing Post-It notes on our foreheads. And sometimes a little note helps more than we realize. It might even help us get what we want for Christmas.

Dealing with Anger

Autism and anger – two A-words that don’t go together well. The combination ain’t pretty.

Last night, Nigel was angry. I had given him an ultimatum: You must clean your room or you can’t have your friend spend the night this weekend as planned. This last resort came after a series of interventions on my part to make the room cleaning as easy as possible. I wrote instructions, broken down into steps, for him to refer to while cleaning. I offered the positive reinforcement of having his friend spend the night this weekend. He called the friend on Monday to invite him to spend Friday night, and as of Wednesday night, he had not lifted a finger to pick up his room. Urging him to get started was met with indifference. I mentioned that he would not receive his allowance until the room was clean. Not motivating enough. I removed the DVD player from his room. No worries. So, faced with letting it slide or hitting him where it hurts, I gave him the ultimatum. And I think the real reason he became angry is because he knows that I’ll follow through with it.

Nigel has two ways of expressing anger – he destroys things in his room or becomes a mad dog. The fact that he chose not to destroy anything in his room last night told me that he didn’t want to make the situation worse because, deep down, he knew that at some point he would have to actually clean his room. So, on some level, he still had control of himself. He just wanted to act like he didn’t.

The first time Mad Dog entered our home, I was quite scared. Nigel, heading into adolescence, was having a lot of trouble filtering the sensations caused by his new hormones. I didn’t know what to expect from him. He was hissing, growling, biting, and making death threats. I don’t even remember how I got him to calm down – I think I just waited it out, holding my breath. Mad Dog has reared his head a few other times in the last couple of years. The death threats have subsided, but the rest of it is no picnic.

After I told Nigel that he would have to cancel his sleepover unless he cleaned his room, Mad Dog came bounding out. He leaped around the living room, growling and hissing, jumping on the back of the couch where my boyfriend Rick and I were trying to watch a movie. I was not pleased. I tried herding him back to his room, at which point he threw himself on the floor and began biting my legs. My patience wearing thin, I left him there in the hallway and went to the bathroom to regroup.

I came out a moment later to the sound of laughter. Apparently, Mad Dog had gone back out to the living room to jump on the back of the couch, and Rick deftly infused some humor into the situation. He grabbed Nigel and gave him a wedgie. That startled Mad Dog right out of him! Nigel went back to his room for a few minutes, and then he came out with a plan. He knew that shoving everything into the closet wouldn’t fly, so he offered to bundle it in an old sheet and drag it into the storage room. I came up with a plan of my own. I told him that first he should put away all the clothing that was on the floor, and then we’d consider using his sheet method. He said okay. After he’d put away all the clothing, I went in and surveyed his room and said, “Why don’t you just put all the stuffed animals back on your bed?” By the time he had done that, the piles on the floor looked much more manageable. I suggested he pick up all the DVDs. “Just the DVDs,” I said. Then, since it was bedtime, I suggested that he could do his sheet plan tomorrow, after he had picked up the books. He said okay.

And so we managed to learn a few important things here at Teen Autism:

1. Humor is a significant tool for diffusing anger.

2. Allowing Nigel to come up with his own plan is an effective motivator.

3. Compromise might actually be possible.

4. Bargaining is very productive.

5. Mad Dog is vulnerable to surprise wedgie attacks.

Picture Day

Often it’s the little things that really make your day. With homeschool pictures, you get to choose the day, you get to take as many shots as you want until you get a good one, and you don’t have to write a check. You also get to make sure that your child is wearing something decent, not the ratty old T-shirt he wore last year without your knowledge that it was picture day at school. This year, I feel vindicated. Here is the homeschooled one, in all his self-buttoned glory.

Using Like or As

For homeschool, we’ve been working on a poetry unit, and Nigel is learning various literary terms. I wasn’t sure how much of it his autistic mind would be able to identify. Things are what they are; he’s a “tell-it-like-it-is” type of person. How could he understand the subtlety and ambiguity of metaphor? I decided that simile would be an easier place to start, with its concrete formula for identification: a comparison of two things using “like” or “as.” His early attempts, tall as a tree and sticky like glue, lacked flair, but we kept at it.

After a long day of homeschool, social skills class at the middle school, and chores, Nigel (who was probably up late last night) claimed he needed a rest before dinner. When I went to call him to the table, I found him splayed on his bed, a hint of a smile across his lips.

“I feel stretched,” he said. “Like butter over too much bread.”

I think he’s got the idea.

The Other Side of the Dating Coin

Life as a single parent is challenging enough. Throw autism into the picture and every limitation is magnified. Try to date and you may decide to just NOT for a while. When your kids are younger, you have to deal with finding someone to watch them so you can GO on a date, and then when your date arrives to pick you up, your echolalic five-year-old son greets him at the door with a shout of “Balto!” because he had just watched that movie. Then when you can’t find someone to watch the kids and your date gallantly albeit naively suggests taking them to the Chinese restaurant with you, you try to sound spontaneous by saying “Sure!” inwardly cringing because you know it’s a bad idea. And then within five minutes of being seated at the restaurant, your five-year-old goes into a sensory overload meltdown as you feared he would and is writhing on the floor screaming and so you leave, and a week later the date tells you he can’t deal with the “extended family.” And since this is not the first time a love interest has ended a fledgling romance in this manner, you think to hell with it, why should I bother?

And then your kids get older, and by some miracle and a good response to therapy, they begin talking more and have learned to filter some of their sensory issues and can actually sit in a restaurant for a bit, so you think maybe you’ll give it another shot. And you get someone to watch the kids, and when the date comes over to pick you up, your now-verbal eleven-year-old son decides to suggest to the date that he should marry you. But the date decides to stick around for a few months anyway (after lecturing you about the inappropriateness of your son’s suggestion, just in case you hadn’t sensed it, even though he himself does not have any autistic children, nor any children whatsoever). And on one outing with your kids that you were apprehensive about doing (but did anyway to seem spontaneous), your autistic eleven-year-old gets lost and you spend half an hour looking for him, and then your SPD nine-year-old vomits all over the back seat of the fledgling boyfriend’s new car that everybody was excited to ride in, and then he tells you that he’s really not sure he can “take on” the “responsibility” of your children. And you think, Really? This again? Still?

And now your kids are adolescents and can actually stay home by themselves for a limited time so getting someone to watch them is no longer an issue. And you take an objective look at the situation and realize that getting someone to watch the kids was actually the smallest issue of all. It was getting someone to understand the kids, to accept them, that was the issue. It was getting someone who not only acknowledged the “package deal” nature of your situation, but who actually wanted to take it on. Those have always been the real issues, you realize, not getting someone to watch the kids or seeming spontaneous enough. And so you go on a lot of lunch dates until you meet someone who you think can understand your life and accept your kids and not be bothered by one son who warns against being seated too close together and still gets lost and the other son who only eats four things and occasionally still vomits in the car.

And you realize that as much as you worry about your autistic teen finding someone kind enough and understanding enough to date him and appreciate him and possibly have a relationship with him, you realize that deep down, you’ve also been just as concerned about finding someone like that for yourself. And when you do find someone willing to fill that role, after over a decade of looking, you realize that only now are you able to truly appreciate that person. Only now do you know what you needed all this time.

Teen Autism

Life in the Different Lane