Category Archives: Family

Things Are Not Always As They Seem

As an autism parent nearly twelve years post diagnosis, I (and, I’m sure, many other parents) have developed what is often referred to as “A-dar,” short for autism radar. It’s the awareness of a possible autism diagnosis through observing the behavior and facial cues of children and adults with whom we happen to come in contact. It’s not something I ever make an effort to do – it just happens. I’ll be in a public place, or a gathering of some sort, and I happen to notice something different, but all too familiar. My spine sort of tingles, and I know. Or I think I know.

A week before going to Nepal, I spent a couple of days visiting with my extended family that lives in Los Angeles County, where I grew up. My brother and sister-in-law hosted a barbeque on the Fourth of July, and, in addition to everyone’s company, I enjoyed lounging around their pool and watching the fireworks from it. We could see about a dozen different fireworks shows in the surrounding communities, all going off intermittently. It was really cool to watch, and I was happy to be there.

The next day, my brother and I got together with our youngest sister and drove out to Hacienda Heights, a city in LA County where we had spent most of our childhood. We drove by three of the homes we’d lived in, stopping to take photos of two of them. They’d both been redecorated, of course, and we were relieved that they were not in disrepair. One had had a tree in the front yard that my brother and I used to climb regularly, and it had been taken out, we noted with disappointment.  One had been a brand new home when we moved into it in 1976, and so the baby trees that our parents had planted had grown up all these years later, towering over the house.  The fact that we had now grown up, too, was not lost on us.

Then we went to the local ice cream store where I had worked during high school. It was still there! It felt weird to be buying cones from the other side of the counter, noting all the changes in the place since I’d been gone for twenty years. The chain grocery store that had anchored the shopping center was empty, out of business. But the ice cream store was still there, a little oasis on a hot day. Then we drove out to the mall where we used to buy all our school clothes while growing up, and we stopped for lunch at a Mexican restaurant that we’d loved as kids. This time, though, we had margaritas.

After lunch, we drove out to the cemetery where one of our grandfathers is buried. We couldn’t remember where it was, but we had a hunch and were able to find it. The three of us sat under a tree on a bench next to his grave and talked about our memories of him. My brother noticed a cigarette butt on the grave marker and got up to flick it away. Then we laughed as we realized that Grandpa probably liked having it there, since he was a smoker who always tried to hide it from everyone.  

When it was time to drive back to my brother’s house, he stopped for gas and got out to pump it. Sitting in the passenger seat, I began to hear some type of vocal stimming coming from the SUV filling up next to us. “Kava, kava, kava, kava,” it sounded like. A few seconds went by, then “Kava, kava, kava,” again. It was a masculine voice, maybe an older teen. I wanted to see him, wanted to see if my interpretation of what I was hearing was correct. But the windows of the SUV were dark, and I could not see in. After another minute, the SUV pulled away, and I silently wished them well.  

Seconds later, I heard it again. “Kava, kava, kava.” Obviously, it had not been from an occupant of the SUV. I turned around and looked. “Kava, kava, kava.” It was a young man selling flowers. What? I thought. What is he saying? I strained to decipher it and decided that he must be saying “Flowah, flowah, flowah.” But he was saying it so quickly and run-together, with a non-native-English-speaker accent, that I thought I had been hearing vocal stimming. I had been convinced that that’s what it was. I laughed inwardly at myself, my certainty, and my mistake. Sometimes things are not always as they appear to be. Houses are repainted, trees grow bigger or get removed, and sometimes a guy is just selling flowers.

My brother and I in front of one of our childhood homes

The Baby Issue

Like many autistic people, Nigel’s always had a hard time being around babies. He just can’t filter the crying. It’s one of the only sounds that he still hasn’t been able to filter very well because of the unpredictable nature of it. That, and he just doesn’t understand why they can’t stop. It’s hard for him to be patient or understanding because his ears are killing him. “Can’t that baby stop crying?” he’ll say when he hears one in a store. Telling him that the baby can’t help it – or that he cried when he was a baby too – doesn’t help at all. It’s not about trying to develop understanding and patience. It’s about needing relief for his sensitive hearing.

And it started early on, too. Nigel was not yet two when Aidan was born, and Aidan had an even harder time with SPD than Nigel did. Poor Aidan spent about 80% of his waking life crying, and poor Nigel literally climbed the walls while Aidan did it. In fact, one of Nigel’s first words – “cying” – was said to describe his brother. Cying = crying without the “r”. He couldn’t say Mom or Dad, but he could say cying. “Yes, Aidan is crying,” I would say, and Nigel would run out of the room.

Nigel has no memory of those days, but he still can’t handle babies crying. He knows they can’t help it, he now understands that, but he wishes they didn’t have to do it. I told him that I’m sure their parents feel the same way!

But, despite how he feels about babies, Nigel is excited to have a baby cousin. He went to see Nolan shortly after he was born, and Nigel was a little nervous, but quite receptive. Now, Nolan is two months old, and we were very happy to have him (and his mom!) come to Nigel’s graduation party this week.  Nolan was very willing to accommodate his cousin and only cried while his diaper was being changed. After Nolan was fed and happy, Nigel came over, smiled at him, and said, “Hi, Nolan. Hey, little guy.” Nolan broke into a sweet grin and Nigel exclaimed, “He likes me!” Then he said, “But I’m pretty sure he’s not ready for some Godzilla action.”

Just yawning, fortunately . . . 

Autism and Pets

Betcha didn’t know! June is National Adopt-A-Cat Month!

Did I hear a ‘so what?’ I know. Many people are allergic to cats. Many people prefer dogs. Many people prefer fish, rodents, or reptiles. And that’s okay. Because any pet will teach a child responsibility, compassion, how to handle death, and more. Pets also bring comfort, amusement, and can present a calming influence. I know. Every day I see the benefits of having pets – with both of my boys.

Over the years, we’ve been the proud humans of five cats, a dog, a rat, a mouse, and several fish. Currently, we share our abode with three wonderful cats, two adopted from local shelters and one from a neighbor. There’s Midnight, our sleek black male shorthair, Sheba, our pretty black-and-tan tabby (see her here!), and our medium-haired little gray girl, which Nigel named Winter (see below). The boys love all of the cats, but Winter’s the newest, so she gets the most attention. Nigel will hold her and walk through the house, saying to anyone in earshot, “Look at her! Just look at her! Look at how cute she is! It’s like she jumped straight out of a painting.” Then he snuggles his face into hers and says, “If your parents could meet you now, they’d be so proud of you!” Aidan loves her just as much. He bursts through the front door when he gets home from school every day and says, “Where’s Winter? Where’s that little princess? I have to pet her!” And then he squeals when he finds her. They are in love with this cat.

And since she’s not their first cat, they’ve learned about death from the ones that came before her. We had one hit by a car a few years ago, and as sad as it was for the boys (and me), our cat’s death helped prepare them emotionally for their great-grandfather’s death several months later. And when Nigel’s very own pet mouse, that he kept in his room and was responsible for entirely, died last year, he handled it with more maturity than I would ever have expected.

Oh, yes, they grumble and complain about having to empty the litter box. They “forget” to do it. But then they see what happens when they “forget,” and they realize that their pets are dependent upon them for their care. And they learn about treating their pets with kindness and respect. Sometimes, this carries over into their dealings with people. At least, that’s the idea.

It’s also worth noting that people on the spectrum can often relate to animals easier than they can to people, such as Temple Grandin with cows or John Elder Robison and dogs. I definitely see this with Nigel. He was playing with Winter a few days ago, pulling a string through the house and laughing as she chased it. After some time, he put the string away and went to the kitchen to get a snack. Then he went to his bedroom to get something, and after that he went to the bathroom. Winter followed him closely the entire time, running right alongside him like a little gray shadow. After a minute of this I heard Nigel say to her, “There’s no way of escaping you, Winter, but I’m glad of it!” He said it in such a sweet, loving tone, with more inflection than he’s ever used when talking to people.

*sigh*  A boy and his cat. Love at first purr.

Our Path

“You can go your own way” – Fleetwood Mac

Right after our highly successful trip to Oregon Caves this past weekend, we decided to drive another hour and a half that afternoon to Redwood National Park on the northern California coast. Apparently a scene from Walking With Dinosaurs had been filmed there, so Nigel had to act out the part with the sauropodlet (as Nigel calls baby sauropods) eating fern fronds.

At any rate, the boys and I loved roaming among the quiet, steadfast giants, and Nigel had fun climbing on the trunks of the fallen. Not wanting to violate any park rules, I checked for signs forbidding climbing. I didn’t see any, and Nigel was being careful, so we went on our way. At the end of the walk, we found some signs facing the other direction. I turned around and read one of them. “Stay on the trail,” it said.

At the end?! Why would they wait until the end of the trail to tell visitors that? I looked around and then it hit me. We had begun the trail loop on the wrong side. We went in through the out door. We finished where others started. But we started where others finished.

That’s how it is when autism is in your life, for the ASD kids trying to figure things out as well as for their parents. We do things differently. Our path is not the same as others’ paths. Sometimes we have to approach things differently to understand them. It may not be the expected way,

but somehow we get through it.

And sometimes it helps to just stop, take a breath, and look up.

Autism and Fears

For several of Nigel’s early years, both before and after his autism diagnosis, his dad and I thought that he was afraid of the vacuum cleaner. It wasn’t until we learned about sensory issues – and noticed that Nigel had the same “fear” of leaf blowers, blenders, food processors, and air hand driers in public restrooms – that we began to realize that he didn’t fear these objects. He could not filter the loud, invasive sounds they made. The sounds were so painful to him that he learned to run to a different room if he saw the things that produced them. And when he couldn’t run to a different room, he would scream. He wouldn’t even cover his ears because he didn’t know how. It actually took him a couple of years to learn that he could do that when he heard a loud sound.

As the years went by, covering his ears became second nature to him. And slowly he learned how to filter the sounds that were previously so agonizing for him. But as his sensory issues became more manageable, he developed real fears to take their place. I’ve mentioned before that he is afraid of bees and other flying insects, and a close second, also in the flying category, are bats. Yes, my son, the zombie movie aficionado, is afraid of bats. And this, in addition to Aidan’s mild claustrophobia, has prevented us for years from going as a family to nearby Oregon Caves National Monument, which I enjoyed as a child. But I am nothing if not determined. Every year for the past five years I’ve tried to chip away a little at the bat fear. One year I bought Stellaluna. Last year for homeschooling we studied bats on Wikipedia, something that Nigel likes to refer to. This year I found my old Oregon Caves pamphlet which distinctly says that the bat population “peaks in the fall when bats swarm to breed,” and told him that both times I had been to Oregon Caves, I had not seen a single bat. So this year, in the spring, he was finally ready. And Aidan decided that since Nigel was going to stare down a fear, he was game to do the same.

We arrived early so that we wouldn’t have to wait long for our tour, and started off with our Ranger tour guide and a group of fifteen other people. We spent over an hour inside the cave of amazing calcite formations, and both boys did really well. At one point, Nigel got a little nervous because the Ranger mentioned that there might be a bat in one of the rooms up ahead, and Nigel growled at another visitor to shut off his camera so that the flash would not upset the bat, causing it to fly into his face. But Nigel quickly regained his composure and proceeded into the room, and I was so proud of him that he went ahead in spite of his fear. Much to our relief, there were no visible bats, and Aidan was fine until the very end, when the cave started to get to him. But he stayed calm, and they both completed the tour. Yes, you read that correctly – they both completed the tour! No panic attacks! No screaming, yelling, or bolting! No whining even! I guess it was like teaching Nigel to cover his ears when he was little – it just took a few years of teaching and preparation. When he was ready, he was fine.

As a treat, I took them to get burgers for dinner at a restaurant. Right after our food arrived and we started digging in, the opening lyrics of a Queen song began. Nigel stopped and listened. “Hey – what’s this song?” he asked.

“‘Bohemian Rhapsody,'” Aidan answered.

“No,” Nigel said, still listening. Then he remembered. “It’s ‘We Are the Champions.'”

“Oh, yeah,” Aidan agreed. (I just discovered while writing this post that last week this song was performed on the season finale of American Idol. The boys and I do not watch this show, so they were trying to remember from hearing one of my old CDs years ago.)

Then Nigel looked at me, making full eye contact. “This is the perfect song for us to hear tonight. You know – because we are the champions of the cave.”

I just gazed into his gorgeous medium brown eyes that I seldom see directly and tried to choke down my burger. “Yes,” I said. “You guys are the champions of that cave.”

Then Nigel quietly sang, “We are the champions . . . of the cave.” And my heart swelled with pride.

 “Paradise Lost” – the room where the bat was supposed to be.

Nigel and a new friend!

End of the tour – jacket and hood completely off!

Know Thy Mother

 

As most moms do, I have a delightful collection of handmade gifts from my children, dating from pre-school Christmas decorations to middle school woodshop creations. I have hand-painted ceramic plates (one with a lion and one with a tiger), glazed foot and hand print castings, hand-shaped terra cotta pots, various paintings and drawings, a wooden whale key holder, a miniature hand-woven scarf (because full-size would have taken too long, I was told), juice-can-lid magnets, a beaded caterpillar, a popsicle stick picture frame (who doesn’t have one of those?), and a Lego heart. And even though I assure my kids that I still like the handmade gifts the best, in recent years they often like to have the experience of picking out a gift for me at the store and buying it with their allowance.

For Christmas this past year, I made it easy for them and requested candles. Both of them had done many trial runs through check stands before, so they knew the drill, but this was their first time completely unassisted. I told them what part of the store I would be in and told them to come and find me after they had made their purchase. Success! They selected some lovely candles to wrap up for me and even had some money left over for some candy for themselves (not part of the instructions, but, oh well).

For Mother’s Day, I decided to make it a little more challenging and made an open request with some suggestions from which they could choose. I wanted them to have some experience in choosing gifts not just for me, but for anyone in their lives as they get older. “When you get a gift for someone, you need to think about things that the person likes and let that influence your choice,” I told them. I then reminded them of some things I like: candles, little bamboo plants, Snickers, kettle corn, SoBe Black & Blue Berry Brew  – perfect little treats for Mother’s Day. We got to the store and I reminded them where things were, told them to have the gifts double-bagged so I wouldn’t see what they’d bought, and then went to my designated waiting spot. The boys got separated and we ended up looking for Nigel for ten minutes, but that’s less time than it usually takes to find him! Not too bad for the second buying-gifts-alone venture. I couldn’t wait until Sunday to see what they had picked out for me!

As usual, they really surprised me. They both eschewed the edible (or burnable) suggestions and went for something with permanence. Aidan bought a pretty miniature rose plant that’s actually supposed to be planted in the ground. “That way Sheba won’t get it,” he said, reminding me of our indoor cat who has destroyed all of my houseplants. A very wise gift, indeed.

And Nigel? Nigel went for something completely different, remembering something I like that I hadn’t mentioned on the way to the store – tigers. I have photos or paintings of tigers in every room of the house (and one on my arm). Nigel bought a tiger figurine to put on my desk. But what he said as he gave it to me makes it even more meaningful: I got you this tiger to honor your independent spirit. How does an autistic teen see a personality trait like that in someone and link it to their favorite animal? Sometimes he really astounds me with what he is capable of.

I thanked him profusely for his thoughtful – and insightful – gift. He really knows his mom! And you know what? I like these store-bought gifts just as much as the handmade ones. There’s something to be said for a truly thoughtful gift, no matter if you make it or buy it.

There’s Something About a New Baby

There’s something about a new baby. Something that makes you believe that all will be well. Something that makes you cry and laugh and think about all the life there is to share with this new soul.

Last week, my sister had her baby, and I am an aunt for the first time. As I held my new nephew, Nolan Tate, studied his face, stared into his deep blue eyes, and kissed his tiny feet, my breath caught in my throat. This new, perfect little life filled me with such emotion. Visions of future family events entered my mind – annual beach trips, Christmas dinners with everyone around the table, summer rafting and barbecues, camping trips, birthdays. A new member to add to the mix. So much to enjoy!

We all took turns holding him, even Nigel, who was reluctant at first. “I’m not sure about this,” he said as I coaxed him onto the couch and put a pillow under his arm. He said he was excited but nervous. I asked him what he was nervous about, thinking he might be afraid of dropping the baby.

“Waking him up,” Nigel answered. Spoken like someone who values sleep! (Or, more likely, fears the sound of crying babies.)

I put his baby cousin in his arms and snapped some photos. Then I asked, smiling, “So what do you think of him?”

Nigel said quietly, “I think he’ll do fine.”

Yes, indeed. Welcome, Nolan. Welcome to our family. And welcome to the world.

100_1727 Aunt Tanya!

100_1730 Cousin Aidan!

100_1720 Sleeping with Nigel.

Can you see the teeny toes?

100_1733 Mama Macrina and her little man!

 

Suspended Reality

I sit in my quiet house watching snow falling on branches of trees that had already started blooming again. But the really unusual part of that sentence is that one word – “quiet.” That’s right – my sons are not home this week.

They visit their father in LA for several weeks every summer, as well as Spring Break and Christmas. I’ve mentioned The 700-Mile Kid Swap before, as well as what happened the last time we did it. But this time was by far the most beautiful (scenery-wise). We took a little detour into north-central California to meet up with their dad at a different spot, since he wanted to take the boys to visit his mother for a few days. And the drive there was simply incredible. At one point we drove through seven miles of orchards. Yes – seven miles of orchards one right after another! And through the trees we could see views of beautiful Mt. Lassen, which Nigel and I climbed last summer. Nigel liked seeing Mt. Lassen, but Aidan was enamored with the orchards. “I would love to live here,” he said in a dreamy voice.

So now they are away this week, and my home is quiet. And I have tons of things to do to fill that time, but I feel like I’m missing an arm and a leg with the boys gone, and it’s hard to get anything done that way. I don’t feel like myself when they’re not here. I’m living in a suspended reality.

I sometimes wonder if that’s what life is like for Nigel – he has his way of viewing the world, and a lot of it is very different from how others view it. And I especially wonder how it is for him being on Risperidone. He is calmer, yes, and can regulate his behavior a bit better, but he is not himself. It is a subdued version of him, a suspended reality.  His eyes – and his demeanor – are different. I know – this was what we wanted. He wanted it, too. We wanted the change in behavior. But I didn’t know there would be a change in him, in his countenance.  

Again I remind myself that he doesn’t need to be on it forever – just a couple of years, I hope, until he learns to regulate his behavior himself. And eventually he will, of that I am sure. He says he can feel the difference in himself, and he is satisfied with the results, which is most important. But I’m looking forward to the day when he no longer needs to take it, and I can have the real Nigel back. For now, though, I know that I’ll still enjoy the company of the modified Nigel. He may not appear to be himself right now, but he’s still unequivocally Nigel.  And I’ll smile as I think of him at the sunny beach this week, while I watch the snow fall.

Rain or Shine

As with most much-needed, much-enjoyed mini-vacations, it was over too soon. It rained half the time and was a bit cold, but we loved every relaxing, silly minute of it. When it wasn’t raining, we walked, beachcombed, built dams, and hot tubbed. And when it rained, we played games (Clue, Jenga, Pass the Pigs, Sorry, and Scrabble), cooked together and ate (a lot), watched movies, laughed, talked, read, popped corn, and listened to music. We communed. In a word, it was restorative. Here are some highlights . . .

“Our” beach, a quarter-mile from the California-Oregon border:

Nigel builds a dam with his uncle as Baxter the dog approaches.

Aidan and Nigel goof off in the cabin:

And, my favorite: Nigel bonds with his new cousin. “He somersaults like I do!”

The Drive

Ugh. I did “The Drive” yesterday. The 700-mile kid swap. The boys get time with their dad, and I get time to get some work done. A week from today I have to do it again to go and pick them up.

In my lifetime, especially in adulthood, I have spent probably hundreds of hours and logged in thousands of miles on Interstate-5, “I-5,” the West Coast artery that connects the three states between Canada and Mexico. It passes through Los Angeles, Sacramento, Portland, and Seattle, among many other cities, for a total of 1375 miles. The landscape transforms from stretches of coastline into the urban sprawl of major cities, from flat agricultural areas into the higher altitudes of the Cascade and Siskiyou mountain ranges and the lush green of Washington. It connects millions of families spread out along its reach. Many of them were headed back home yesterday after Christmas gatherings. It was a bit crowded.

I was struck by the universal experience of it all – the traveling to see loved ones, the returning home afterward. I envisioned other families parting with hugs and well-wishes of safe driving, just as I hugged my kids there in the parking lot of the Carl’s Jr. before we got back in our cars and drove off in separate directions. We all experience these partings in varying degrees.

Before Nigel got in his dad’s car to leave, I hugged him and reminded him to watch for cars backing out of driveways when he goes for walks in his dad’s neighborhood.  “I know,” he said, but without his usual exasperated tone. Then he briefly made eye contact and said, “I love you, Mom.”

Shakespeare said it best – parting is such sweet sorrow.