An e-mail I received today:
Hi mom,
This is my pipe cleaner sculpture of Charlotte and her web. I made it
today. What do you think of it? We are having so much fun with dad. I love you and I’ll see you soon.Love
Neil
* one of the words Charlotte wrote in her web (and also what I think of the sculpture)!
“Mom!” Neil calls from inside the house. “Don’t forget we have to go to the animal shelter!”
“I won’t – I’ll be in in a minute!” I am hanging up the last strand of Christmas lights around the front roofline of our home and can barely feel my fingers. It is late afternoon, and there is still frost from this morning on all of the vegetation in our neighborhood. Baby, it’s cold outside. Cold and dry.
I climb down from the ladder, put it away, and plug in the lights. Then I step back a bit to view my handiwork. Hmm. Strange how those eight bulbs worked just fine when I tested the lights forty-five minutes earlier, before stringing them up. Oh, for crying out loud. Sometimes I wonder why I bother.
I run in the house and wash up, calling out to Neil to see if he’s ready to go. Every Sunday afternoon for the past several weeks, we’ve volunteered at our local animal shelter as part of a community service requirement for his next level of Boy Scouts. The animal shelter welcomes under-18 volunteers as long as their parents accompany them. And so, we both go.
Initially, I resisted this time taken out of my much-needed and usually full weekends. How could we – I – possibly fit it yet another activity? How could I possibly get everything done? When was I going to squeeze in some down time? I already volunteer for the Autism Society of Oregon and various other Scout activities. Furthermore, we have pets at home to take care of! I didn’t have time to volunteer to take care of more animals! I did realize, of course, that this was the perfect opportunity for Neil to get in his community service time for Scouts. The animal shelter is only a five-minute drive away, and Neil loves animals. I decided to grin and bear it.
We get in the car and drive to the shelter. I laid down the law before we even started there four weeks ago: No new pets. No matter how cute they are, no matter how much you love them, no matter how long they’ve been at the shelter. Neil had agreed. But after a month of being surrounded by cute kitties in need, Neil starts saying things like, “I wish we could afford to take you home with us” when he’s holding a cat and I’m in earshot. I remind him of his irritation with cleaning the cat litter for the cats that we already have. He considers this a moment.
“I know!” Neil exclaims. “I want to start my own animal shelter! That way, I can have lots of cats and have employees and volunteers to help take care of them.”
So. We’ll just add that to the list of potential careers for my son, right up there with inventor and astronaut. But then I realize that he’s absolutely right. He loves animals and wants to help those in need. And that’s exactly what he told me when I asked him why he wanted to start an animal shelter. I said that we could certainly look into it.
Meanwhile, my grin-and-bear-it time has turned out differently than I thought it would. I find that while I’m holding and petting the adult cats and playing with the kittens, I’m not thinking about anything else. I’m not stressing about the things that I’m not getting done and the time that I’m losing. I know! Can you believe it?! I just sit there and relax! There’s no computer, no phone, no calendar, no errands. It’s actually just what I needed.
The hour passes quickly, and we sign out and go home. When we pull up to the house, Neil comments in a dry tone, “It seems like some bulbs aren’t working.”
And the best part is that it doesn’t even bother me.
Remember Alex Barton? Let me jog your memory – he’s the boy whose Kindergarten teacher saw fit to have his fellow students vote him out of the class, as if it were a Survivor episode. After reading about it, I was beside myself with strong emotions: sadness, disbelief, and fury. How DARE (yes, I’m yelling) that teacher disregard the self-esteem of one of her students? How DARE she teach her other students to insult him and cast him aside, instead of helping them to show compassion because of his differences?
Well, friends, fortunately the story didn’t end there. It was the beginning of another story – one of love, acceptance, and connectedness. A way to show Alex that people do care, that people are supportive. And we can all be a part of it.
Melissa Barton, Alex’s mom, with a little inspiration from Kyra of ThisMom, came up with The Tie-Dye Project. It began with Alex and his mom making five tie-dyed shirts and sending them out to five ASD kids. Each of those kids (and their parents) received a note on how to continue the project – just make five more tie-dyed shirts and send them out to five ASD kids. When was the last time a fun project had so much meaning behind it? Love, support, and understanding among kids on the spectrum. It’s a wonderful thing.
Yesterday Nigel received his shirt from Kendall. “This is really nice,” he said, checking it out. I told him about Alex, and Nigel is very excited to be a part of the shirt-making chain for ASD kids. He’s raring to go, so all we need now are five participants who would like to receive a tie-dye shirt from Nigel! Just leave a comment if you’d like one, even if you’ve not left a comment before, and I’ll email you to get your address.
Join in! As Nigel said to me in his flat but beautiful voice, “We need to get the word out.” And we will.
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.
When Nigel was first diagnosed at age three, and for some time after, he didn’t know how to play with toys. I bought him a kids’ train set; he laid his head to one side and stared at the tracks. He had no interest in pushing the train along, even if I showed him how. I bought him Hot Wheels cars and tried to teach him to “vroom” them around on the floor; he lined them up end-to-end along the back of the couch and cocked his head to one side to stare at them. I feared that his imagination would never develop; eleven years ago my only knowledge of autistic adults was, unfortunately, limited to Rain Man. I didn’t know what to expect for my son’s development.
But, thanks to a successful response to a modified ABA-based program for early intervention, and perhaps his own desire, Nigel learned to play with toys. He skipped over “vrooming” on the floor and went right to faster-paced, battery-operated Hot Wheels tracks. His imagination began developing with his desire to feed his stuffed animals. And then he discovered Lego.
I cannot say enough wonderful things about this toy that I loved in my own childhood. Yes, we’ve all gouged our feet on errant pieces and cursed its existence, but the fact is that no other toy has encouraged Nigel’s imagination to develop as much as Lego has. And for that, I love it.
And we have tubs of it. Literally. We progressed from a medium-sized tub to two of them, and then I just up and bought a huge industrial-sized tub with a hinged lid, which is now full. And still Nigel begs for more, especially since they’ve come out with the Indiana Jones series. Oh, my son. Be still, his heart. Lego and Indiana Jones – two of his favorite things. That’s all he wanted for Christmas. It’s like the Lego people somehow knew that this combination would make an autistic teen very, very happy.
So I bought him the sets that he wanted, as well as this book that he has not let out of his sight. Of course he has re-watched all four of the movies several more times since Christmas, just to make sure that he has all the nuances of every line down pat. And so, when he decided to watch the Troy DVD this afternoon, I was pleasantly surprised. “I’m studying the layout of the outer walls of Troy so that I can take apart the Temple of the Crystal Skull set and build Troy,” he told me.
And that, my friends, is what he did. He constructed the ancient city of Troy out of Lego, completely off the top of his head and of his own design. He built a wall with a ratcheted gate and levers to open it. Yes, he even built a Trojan Horse out of Lego. That is either one hell of a toy or one hell of an imagination. He’s come a long way from lining up Hot Wheels cars along the back of the couch and staring at them. And Rain Man? No offense, but you can keep your cards and toothpicks. Nigel’s got an imagination – and he’s not afraid to use it.
Teaching empathy to an autistic child is one of the many issues we parents face. I do so in small ways, such as reminding my son to hold the door open for someone who is coming through the same door behind him. I have him help me carry the groceries into the house. We apologize to the cat who was accidentally stepped on. I also try to get Nigel thinking in big-picture terms of empathy, such as donating stuffed animals, toys, and school supplies to a Hurricane Katrina project three years ago and having discussions about the impact of natural disasters and acts of terrorism on people and families, not just buildings.
And so when my sister had the wonderful idea of Nigel joining her for a Habitat for Humanity walk in her area yesterday, I wholeheartedly encouraged Nigel to do it. I told him about Habitat for Humanity and described other people’s living situations to him and how this organization helps. And he wanted to be a part of it.
Yesterday dawned a bit cloudy in Roseburg, Oregon, but we Pacific Northwesterners aren’t daunted by a 66% chance of rain. Nigel went out with his aunt and her dog and jog-walked the two-mile area with about 30 or 40 other participants, and they got a cool “I support Habitat for Humanity” T-shirt out of the deal. I told him I was proud of him for getting involved with a good cause. That night I asked him if he liked going on the walk.
Nigel: I didn’t mind it.
Me: Sometimes when people say they don’t mind something, it indicates that they don’t really like it.
Nigel: Well, the jogging part was a little tiring, but the walking part was okay for me. I liked that part.
Me: Did you like showing support for Habitat for Humanity?
Nigel: Well, we need to do something for the poor.
That’s my boy.
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.
At some point in the last couple of years, Nigel, like another skillful boy his age, learned to make toast. He has this routine of pre-slicing the butter so that it has softened by the time the toast pops up, placing the thin pats on the toast, waiting 30 seconds and then spreading them. Then he actually wraps up the bread and butter and puts them away. It’s one of the things he does perfectly. And until last week, it was the only thing he could cook. Not anymore!
Last week I came home from work (I usually work from home so that I can homeschool him, but I go into the office on Fridays), and I could tell by the smell that something had been cooked. And not just toast. I put my stuff down and called out, “Nigel?” “Hi, Mom,” he answered from the living room. “How was your day?” I calmly asked. “Fine.” Did I really think I would get more than that? “Did you do your schoolwork?” “Yes,” he said, keeping his eyes on the TV.
“What did you cook?” I asked.
“I made grilled cheese.”
I surveyed the kitchen and noticed that my 12-inch risotto pan was out on the stove with a spatula inside of it (and the remnants of browned butter). The cheese, bread, and butter had all been put away. “Wow,” I said supportively. “How did it turn out?”
“Fine.”
“How did you know how to cook it?”
“From watching you.”
Thus my son proves that, once in a while, he does pay attention. And, more importantly, that he can cook on a gas stove without blowing up the house! Without burning anything! I am so proud. Emeril, watch out.
We are off to Lassen National Park, getting in one last camping trip before summer’s over! Nigel will be hiking up the 10,457-foot peak with me while Aidan (not into hiking so much) joins Grandma for a canoe ride on Manzanita Lake. My mom works as an interpretive ranger at the park, so it will be fun to see her lead one of her ranger programs. We’ll return Thursday with a full report!
Last night as I was saying good night to Nigel, I noticed that all of his fingernails were edged in black, as if he had taken a Sharpie and drawn under the nail tips and around the cuticles. “Is that paint on your fingernails?” I asked. He breathed in sharply and froze, alarmed because I had noticed. “It’s from the Magic 8-Ball,” he said.
Then I froze. “You took it apart?”
“I tried to get the fortune thingy out.”
I did not respond because I was wondering what happened to the inky, chemical-filled liquid inside the Magic 8-Ball. I was also remembering other things Nigel has taken apart. Finally I decided that since I didn’t see any stained towels or patches of carpet anywhere, he must have dumped the liquid down the drain and must not have ingested any or else he’d be very sick. So I decided not to stress about it.
Nigel: I wanted to know if it was a simple pyramid or a more complex thing.
Me: So which was it?
Nigel: It was not a pyramid. It was like a prism-pentagon.
So there we have it. I, for one, have always wondered about those things. Mystery solved, and in such a metaphorical way. It had to be a more complex shape. How else could it have answered so many of life’s big questions?
