My Radar

After many years of living with my son’s autism, I feel like I know autism when I see it. It’s like I’ve got this radar, and I’m sure other long-time autism parents sense that as well. There’s a difference between a “terrible twos” tantrum and a sensory-overload meltdown. There’s the unmistakable taking an adult’s hand over to the refrigerator to open the door to get something rather than asking or pointing. The lining up of toys, the not responding to questions or comments. And yes, these are rather stereotypical signs. But it’s the child’s presence, and face, that I recognize more than anything.

A while ago I attended a child’s birthday party with a friend. It was for his co-worker’s three-year-old son, with many friends and family members present. Within minutes of observing this little boy, I knew that he had autism, not just by his mannerisms and the signs, but by his face. It was so familiar, and my blood turned to ice because I knew that his parents didn’t know. A few moments later, I turned to look at my friend, someone who had spent much time around my son over the years, and my friend’s eyes were wide. He knew, too. “I think he has autism,” my friend said quietly to me.

I felt strange. I was not close to these people. How could I go up to them and say, “I think your son has autism”? Or even the less-shocking, “Have you looked into speech therapy?” I was torn because I felt like I should do something to steer them toward early intervention, and to somehow convey to them that I understood. But it was not my place. I was an outsider.

I continued to observe the little boy and his family. There was so much love and acceptance, and so much accommodation of the autism that they didn’t know about. Was I obligated, as a seasoned autism parent, to say something? Part of me thought so. What if they knew something was different about their son? What if they were searching for answers? But a larger part of me just realized that, as a stranger, it wasn’t my place. It was a birthday party. I told my friend to give them my number if, in the future, his co-worker approached him to say that his son was diagnosed with autism.

The radar will always be with me, and I’m sure that other situations will occur throughout my life in which I find myself faced with the “should-I-say-something” dilemma. It comes with the territory. But so does a lot of support, knowledge, and understanding that I can offer down the line, when they’re ready. That’s my place in the picture.

Savant-Garde

A few weeks ago we enjoyed a visit with some long-time friends who live out of state. Our families have been friends for so long that we joke that our sons were “friends before they were born.” At one point, their NT son Jonathan, who is twelve, was talking with Nigel about how he (Nigel) learned to read when he was three and a half.

Jonathan: That must be your savant skill.

Nigel: My what?

A sort of chill permeated the air, even though it was about 105 degrees around the patio where we sat. Jonathan didn’t respond, his parents didn’t respond; I think everyone was waiting for me to jump in. It had never before occurred to me to talk to Nigel about autistic savants. I had never thought that his hyperlexia qualified as a savant skill. Sure, it was astounding at the time, but the sources I checked do not include it as a sign of Savant Syndrome.

Me: A few autistic people have skills like computing difficult math problems in their heads, playing music very well, painting or drawing something in great detail, and memorizing lots of information. They’re called autistic savants. But not every autistic person is a savant. In fact, most are not.

Nigel: Good. Because I hate math.

So glad that’s settled.

Getting in Gear

There are no bells, no forced schedules, no dress code. No busses, no other students, no anxiety. This is homeschool. And even though it is the ideal learning environment for some kids (like Nigel), it’s still school. And he’d rather not do it.

We’re relatively new to homeschooling, having started six months ago (and the past three months were summer vacation), but, knowing my son, I think that even if we’d been doing it for years he would still complain, as he did this morning. I pointed out to him that I was sure he’d rather be doing homeschool than be in a classroom with lots of other students bothering him. You’ve heard of fantasy football? Nigel wants to do fantasy school. He responded, “I want to do school on a video screen lying in bed.”

So, even for homeschoolers, it’s hard to get in gear. Maybe it’s because we don’t have bells and lockers and busses. I’m still working on our schedule because we’re waiting to hear back about the time slot for the social skills group meeting that Nigel will attend once a week at the middle school. And we’re waiting to hear back about checking out an eighth grade math book for the year.  So for now, we work with our tentative schedule, we do a review of last year, we go through the math and grammar workbooks, we discuss our plans for electives (Spanish, psychology, and judo), and wait for things to be ironed out. It’s our way of warming up and easing back into academia. Short of lying in bed with a video screen, that is.

Happy Humming

So often with ASD in the house (and especially away from the house), we focus on damage control and looking for signs of anger, frustration, and sensory overload, trying to cut them off at the pass before they mushroom into a complete meltdown. We instinctively watch for signs of escalation in our children and have learned their triggers, how to avoid them if possible and how to manage them if not. We are attuned to their body language, their sounds, their facial cues. We’ve got it down to a science.

Last night I heard Nigel’s laughter while he watched a funny movie, his hearty, sincere belly laugh.  And I smiled, enjoying his happiness. He also hums when he’s happy, a soothing little six- or seven-note tune that he repeats over and over again. Often I will walk by his bedroom as he is working on his computer, building Lego, or reading, and I hear his happy humming. And I remember when he was a baby how I used to hum while rocking him in the rocking chair, my humming reverberating near his head as we both rested. His current hum is not the same tune, but when I hear it I get the same feeling, the same serenity, as I did with my humming from his babyhood – ethereal, calming, and restorative.

The signs of contentment are just as important as the signs of distress. We may not need to attend to them, but we appreciate them, fleeting as they may be. Sometimes I think we need to pay as much attention to those moments as we do to the others.

Happy humming, everyone.

A Goonie Afternoon

Nigel’s Obsession of the Week, besides his impending Terminator Halloween costume, is the ‘80s movie The Goonies. He was introduced to this classic a few years ago and has loved it ever since. Being an extrovert, Nigel loves the friendship theme of the movie, and being autistic, he appreciates the befriending of the misunderstood, cognitively challenged character, Sloth. According to Urban Dictionary, “goonie” means “outcast” or “geek,” but also “good friend or homie.” Nigel considers himself a goonie.

After school today, he invited his NT friend Riley over to watch the movie with him. Nigel and Riley have been friends for six years, and I’m sure he has seen The Goonies with Nigel on several different occasions. Yet Riley comes over and hangs out, accepts the fact that Nigel talks and narrates throughout the movie, and just lets him be who he is. And of course, that is what good friends do. We all have our quirks, and some require a little more patience than others. But for a child, now a teen, to take it in his stride and recognize the needs of someone who’s different and care about him and spend time with him in spite of some pretty riotous quirks, well, simply put, I just love him.

They were in the kitchen at one point, taking a snack break, and I overheard Nigel say, “Do you think we’re like The Goonies? You know, friends in the same neighborhood having adventures?”

“Yeah, we are,” Riley said, biting into an apple.

“Because I’m a goonie, but you understand my difference.”

“Yeah, Nigel, I do.”

Sometimes, my heart just overflows.

Our Hero

We are an arachnophobic family. Nigel certainly fears bees and other flying insects, but spiders head the zero tolerance list for all of us. Aidan recently wore flip-flops in the house for a week when a spider hit had gone awry and the intended escaped. We don’t take these things lightly.

Last night, Nigel came up to pet one of our cats, Sheba, who was very interested in something on the floor. Nigel bent closer to look and immediately jumped back, gasping, “It’s a spider!” Sheba, as if on cue, pounced on the smallish pest, then stepped back and proceeded to eat it.

Nigel chuckled. “She’s a good cat. She’s a good bug killer.”

Then he kissed her head and said, “You mad, impetuous thing,” and went back to his room, secure in the knowledge that we have an effective spider slayer in our home.

First Days and Sensory Processing Disorder

First days of school are nerve-wracking for lots of people, but especially for those with Sensory Processing Disorder. Most ASD people have some type of SPD (or several), but there are also many people with SPD who do not have autism. Aidan is one of them.

In the beginning, of course, I did not know this, but early on I thought he might have something I read about called “low sensory threshold.” He cried when I held him, he cried when I put him down, he cried in the baby swing, he cried in the car, he cried in stores, and he cried at home. He cried about 80% of his waking life. I did not know what to do for this child. The crying was so extreme that it prompted his two-year-old autistic brother to speak one of his first words: “cying.” He was trying to say “crying” but couldn’t get the “r” sound. “Yes, Aidan is crying,” I would tell Nigel.

Aidan was about one and a half when Nigel was diagnosed with autism. At the time, I thought about the fact that Aidan was also not making any attempts to talk and had very sensitive hearing, like Nigel. I wondered if Aidan also had autism. There were many who suggested that Aidan was simply mimicking his older brother, but the signs were there even when Nigel was elsewhere. Nigel’s autism was more on the severe side as a young child, fairly obvious once diagnosed, so if Aidan did have some level of autism, I thought it might have been PDD-NOS. Trying to be objective, I looked at the differences in my sons’ behavior. Aidan made eye contact. He knew how to play with toys. He did not stim. He was just always crabby about something. So PDD-NOS did not seem correct. But what, then?

When Aidan was three years old I was able to enroll him in the same early intervention program that had been so beneficial for Nigel. The therapists evaluated Aidan and informed me that he had problems with sensory integration (SPD hadn’t been coined at the time) and a developmental delay in language. They provided OT and speech therapy, which seemed to help him. But it wasn’t until he was five that Aidan seemed to tolerate his body and his surroundings better. He finally seemed happy.

Aidan continued to receive speech therapy until he was almost ten, and I could tell he was glad when that was behind him. He is now IEP-free (yes, I did the happy dance when I left the last meeting, because now I only have one child with an IEP) and does quite well in spite of the fact that he is the pickiest eater in all of southern Oregon (at least) and hates wearing shoes because “they smash my feet.” He constantly complains about smells that no one else smells, he wears the same clothes for days on end because they’re the only ones he feels comfortable in, can’t stand having his hair brushed, gets carsick, and won’t tie shoelaces or ride a bike. But at least he no longer cries 80% of the day!

And so I was a bit concerned about Aidan’s first day at a new school. School in general can be a pain for SPD kids due to the potential for sensory overload. I drove Aidan this morning so he wouldn’t have to “process” the bus yet, and I think that helped to ease him into the first day. He said the lockers aren’t so bad, and he assured me that he didn’t buy anything at the vending machines. He didn’t get lost, and he got on the right bus to come home. Best of all, he didn’t get carsick!

 

Added 9/13/08: an informative SPD site – click here

Technicians in Training

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?!

Six Unspectacular Quirks

I’ve been seeing this meme going around the blogosphere for a bit, and every time I see it I think about what I might list as my quirks. And now I’ve been tagged with it (by Bonnie at Autism Family Adventures), so I’ve got to censor narrow down my quirks to six. Herewith, I admit to the following as unsheepishly as possible:

  1. I am obsessed with peeling sunburns. You take your life in your hands if you walk past me and I happen to notice skin flaking off your shoulders. My sons run from me. And I don’t just peel skin off of other people; I enjoy peeling my own sunburns even more. But since I do wear sunscreen daily, my opportunities for self-peeling are limited.
  2. I love the different textures of my hair. I love when I run my fingers through it and discover one that’s coarse and wiry hidden among the rest of the straight hair. I love how it feels on my fingers.
  3. Everyone has their own scent (and not the sprayed-on kind). When I am in close proximity to people I know well, I discreetly inhale their scent. With my kids I am more direct; I walk right up behind them and smell the tops of their heads. (If this is starting to sound like I’m a little “atypical,” I would wholeheartedly agree with that assessment.)
  4. I am freakishly good at word searches. I can find them diagonally/backwards and any other way. If a word is in a word search, I will find it, and usually quickly. When Aidan brings one home from school, I have to restrain myself not to do it for him.
  5. I only sleep on my left side, although this is more of a forced quirk, since it’s because of a snowboarding injury to my right shoulder a couple of years ago. No more jumps for me!
  6. I have not worn a watch in twenty years. Instead, every day for twenty years I have worn a silver bracelet that my grandmother gave to me. If that bracelet could talk, this list of quirks would have no end.

And now it’s time to pass the fun. The rules of this meme are as follows:

1. Link the person who tagged you.
2. Mention the rules on your blog.
3. Tell about 6 unspectacular quirks you possess.
4. Tag 6 following bloggers by linking them.
5. Leave a comment on each of the tagged blogger’s blogs letting them know they’ve been tagged.

But here’s the thing: when you play tag, you only have to tag one person. So I am going to bend the rules and only tag one other blogger whose quirks I’m dying to know . . . Osh at The House That Osh Built! Thanks for indulging me (and my quirks)!