Category Archives: Siblings

Surrender

It would be almost impossible to enumerate the many things we learn from our children, particularly those who have special needs. Infinite patience, for one. Hope. Perspective. Appreciation. Acceptance. Love. And maybe a thing or two about dinosaurs or natural disasters.

But with each of our children, special needs or not, if we really stop to think about it, we might find that one thing stands out above all else. The one thing that we really needed to learn from them, and from them alone. I wrote recently that what I have learned from Neil is the power of belief.  More than anything else, every day of his life, Neil has taught me to believe. But what I have learned from Adam is just as valuable.

In a word – surrender.

We’re not conditioned to view surrender as a good thing. To most of us, it means giving up. But to me, surrender means letting go. It means letting go of that which I cannot control. It means letting go of expectations. It means accepting What Is. And it’s something that Adam, even more than Neil, has taught me every day.

*

Unfortunately, I don’t write as much about Adam. This website is called Teen Autism, and Adam was never officially diagnosed on the spectrum. He did, however, experience a significant delay in language development, necessitating speech therapy until almost age ten. But what really affected him – and still does – is his sensory processing disorder. He must have been miserable as an infant, toddler, and even a preschooler. It wasn’t until age five that he seemed to be somewhat at home in his body; he was finally talking and smiling more often than crying and yelling.

But his eating issues continued to get worse. Whereas I would call Neil a picky eater, Adam is a limited eater. A year ago, as he was nearing 13, I started to realize that it seemed to be a control issue with him – not to control me, but to have some control in his life. He couldn’t control that his dad, whom he idolized, lived 700 miles away. He couldn’t control that he had an autistic brother. But he could control the food that he decided to eat. So what started off as a sensory issue developed into something even more involved.

And it bothered me greatly, not just because I worried about his health and his growth. It bothered me that I couldn’t just cook dinner for my child and he would eat it. Even at age 13! It bothered me that he was a teenager and, like his brother, should have been eating me out of house and home (even though Neil is picky, he still manages to eat a variety of foods, and in mass quantities). And it bothered me that Adam would eat more food when he was with his father. I took him to see a counselor, and he fought me, saying, “You’re making me do something against my will!” I compromised, telling him that if he increased his dinner choices to seven things, one to rotate each day of the week, that we would stop going to the counselor. He reached that point within three weekly sessions, and although I followed through, he has since lapsed to five or six items on the rotating dinner menu.

So I surrendered.

I let go of my expectations about Adam’s eating habits. I let go of my expectations about how he responds to having an autistic brother (hint: it’s not always noble or gracious; in fact, usually not). I had to surrender. I had to. And I thought that if he could spend more time year-round with his dad that he might start eating better when he’s with me, too.

*

He has been with his dad for over three weeks now. I’ve talked to him several times, and the last time I did he told me, with excitement and pride in his voice, “I’ve been trying lots of new foods, Mom! I’ve been eating a lot.” And I told him, choking back tears, that I was so glad to hear it.

And someday soon I will tell him that there is nothing I wouldn’t have done to help him to be as happy and healthy as possible. I will tell him that it’s okay that he’s not always glad to have an autistic brother, that I honor his feelings. I will tell him that I accept the fact that he eats differently. And I will tell him that I have become a more balanced person because of it, because of learning to surrender.

Adam, age 9, being a tiki at Pu’uhonua National Historical Park, Hawaii, 2006

Everything’s a Competition

The Scene:  Interior suburban family home. A mother and her two teenage sons are seated around a wooden coffee table in the living room, playing the board game Risk. Her older son, who loves military history and geography, is rapidly gaining control of the Western Hemisphere. The mother marvels at the fact that he now has the patience to handle long, strategic board games. Her younger son, influenced by his Eastern European ethnicity and a recent interest in dictatorships, sets up Moscow as his home base and systematically conquers Asia. The mother hangs out in Africa and Australia as the two brothers conspicuously gang up on her. Secretly, she loves the fact that they are working together and considers it a bonus that the tediously long game appears to be winding down (or at least her role in it), although she has enjoyed the family time and hopes that her sons have as well. She smiles contentedly as she surrenders another territory.

Younger son: This may not be the appropriate time to mention this, but I can feel my first armpit hairs growing.

Older son (in a flat tone, keeping his eyes on the board): Mine are longer than yours.

Image credit:  virag virag

Stretching

Remember Silly Putty? You could pull it apart slowly, and it would keep stretching and stretching and stretching. But if you tried to pull it apart really fast, it wouldn’t stretch. It would snap.

Sometimes I feel a lot like Silly Putty, trying to stretch to accommodate all of the elements of my life. But I think that the hardest part for me, besides my sons’ father living far away, is being pulled in two directions trying to meet the needs of both of my boys. I feel like I’m just stretching and stretching. Most of the time, I can keep stretching, and I do. But sometimes, too many things that require my attention happen at once, and I reach a breaking point.

Take last weekend, for example. Nearly all day Saturday was spent doing Neil’s Boy Scout event with recycling Christmas trees. We got home from that, I made dinner, cleaned up after dinner, and started doing some work that was due for a client. I figured I could finish it by Sunday afternoon before heading out to the animal shelter to do the weekly volunteer work that Neil needs for a Scout requirement. Then we’d get home, I’d make dinner, fill out some paperwork that needed to be done, and that would be the end of the weekend. No down time. I felt really stretched.

So I was sitting at my computer, working on some spreadsheets, and Adam walked in to ask me to take him to the mall tomorrow so that he could trade in some old video games and get a new one. I sighed, trying to avoid snapping. I felt like I was being pulled apart too fast. I started to complain about how busy I was, being gone all day at the Scout thing and having work to do, and the animal shelter tomorrow, and more work, and . . . Adam’s face fell. He started to walk away.

And then it hit me. Again. I do so much for Neil. He requires so much of my focus and time. And Adam asks for so little. How could I not do this for him? All I needed to do was stretch a little more, to make a little time for my second son, who so often feels like second fiddle.

“Wait, honey,” I said. “I’ll be able to fit it in. We’ll go right after Neil and I get back from the animal shelter. And after the mall, we’ll go out to dinner, okay?”

“Okay. Thanks, Mom,” he said, his face brightening some.

And that is what we did. Sunday afternoon, Neil and I got back from the animal shelter, and Adam had his bag of old games all ready to go. I changed my clothes for dinner, then we drove to the mall and exchanged Adam’s games for the new game that he wanted, and he was happy. We went to the restaurant, and Neil, without prompting, actually thanked the waiter when his plate was set in front of him. That’s twice in one weekend, for anyone keeping track!

And I’m so glad that I stretched myself a little more. It’s often a huge challenge doing this on my own, but it’s worth it to keep stretching. It’s worth it to make sure Adam knows that he’s also my priority. Fortunately, I’m a lot like Silly Putty. When it snaps, you can easily connect the two ends together again.

Sibling Needs

Attention is not evenly distributed when you’re a special needs parent. When you have more than one child, and especially when you have less than two parents, things tend to get very lopsided. I still haven’t figured out how to fix that. “You always pay more attention to him than me.”

Guilty as charged.

Even when I had two kids with IEPs, one’s needs were more demanding than the other’s. One child needed home visits as part of his Early Intervention plan; the other did not. One child needed constant supervision; the other did not. One child needed to be homeschooled; the other did not. The list goes on. And you can’t expect the child with fewer needs to be understanding. After all, that child is just as much your child as the one with greater needs.

So you try to do special things for and with the child who feels like he’s not as important. You tell him that he is just as important as the one who requires so much more of your time and attention. You write posts about him on your blog and let him read them. And speaking of the blog, whenever you’re working on it in your office and he comes in for some reason, you always minimize the screen out of sensitivity for his feelings, so that it doesn’t seem to him that you’re always writing about his brother. Even though over 90% of the time, you are.

And when he comes into the kitchen the night that you are taking a picture of the photo album, open to a spread of his brother as a baby, and he asks what you’re doing and you tell him that you’re working on an idea for a blog post, it doesn’t surprise you that he just says “Oh” in an unimpressed, disappointed tone and walks out.

And it reminds you of how damned lopsided it’s always been, and that for every post you write about his brother, you want to write one about how proud you are of him, the one with fewer needs. And not because he has fewer needs, of course, but because he is so very important to you, and you’re so sorry that it doesn’t always appear that way. And you want to tell him that you look at his baby pictures just as much, and that they are just as meaningful to you, just as beautiful. Just as special.

Even though he’s wearing his brother’s shirt 😉

Quite Warm

The Scene: A family of three – a mother and her two teenage sons – strolls into the gated outdoor pool area of a hotel. It is early evening; the desert sun is low. The mother settles into a chaise lounge near the pool, and her sons drop off their towels on chairs near her. They walk around to the deep end of the pool as the mother opens up a book. The older brother dips his toe into the water.

Older brother: It’s quite warm.

He backs up, and then strides quickly toward the pool as he jumps and pulls himself into a perfect-form cannonball. Perfect. The mother, impressed, didn’t know that her son could do that so well. Seconds later, he calmly surfaces.

Older brother (in the same tone): It’s quite warm.

Mother: Good!

She smiles at her son, wondering what movie he is quoting. Usually when he repeats himself, it’s because he’s either employing echolalia or is expecting a response. He is satisfied with her acknowledgement and glides over to the far corner of the pool. The younger brother then readies himself: he backs up, strides toward the edge, and jumps. He does not exhibit the cannonball form of his brother, but his long hair flies impressively. The mother wishes she had filmed it. He surfaces, spluttering.

Younger brother, sneering: You LIE!!

He lunges through the water toward his older brother, who laughs as he evades him. The mother hides her smile behind her book. So that’s what he was up to, she muses.

Thinking Ahead

My younger son Adam, who is twelve, has recently discovered Bob Marley. He found one of my CDs from my college days (when I first discovered Bob) and it was love at first listen. Adam plays it day and night. He tells me that he likes the music, but also the lyrics. And I’ve noticed that, too. Adam seems even calmer and more introspective than usual. What I hadn’t noticed was that Neil had also started listening.

Last weekend the boys were very excited because The Day the Earth Stood Still was opening. They had recently seen the original and looked forward to comparing the new one to it. I told them that we’d wait until the following weekend so it wouldn’t be so crowded. Then I made the fatal mistake of writing on the calendar the day and time I hoped that I could take them to see it.  If it’s on the calendar, it’s in stone as far as Neil is concerned. It’s going to happen. And usually, it does. But that morning the schools had scheduled an emergency 2-hour late start due to bad road conditions, and that threw everything off for the day. Because Adam started school two hours later, I couldn’t go into work until two hours later. Consequently, I didn’t finish my work until two hours later than I normally do. By the time I got home, I could not do all I needed to do in time to go to the movies that evening, and we would go the following day, I announced.

Neil got upset. “But it’s on the calendar!” he yelled and began breathing heavily through clenched teeth, eyes wild as he quickly went into meltdown mode. This was not good. I had plans with a friend later that evening (something I had planned to do after the movie), and if Neil didn’t calm down, I wouldn’t be able to leave him. I tried reminding him about “Old Plan, New Plan.”  “That doesn’t work!” he yelled. He then took a wooden ruler and mutilated a piece of pizza with it. I could tell he was escalating. He went to the living room and broke one of my hand-painted pysanky eggs from relatives in Slovakia. I knew that my response was crucial – he wanted a reaction out of me, so I did not react. I calmly said, “Neil, pick up those broken pieces and put them in the trash.” And I think he was a little surprised that I didn’t yell at him about the egg, so he actually cleaned it up. He resumed his verbal tirade, but at least he stopped being destructive. Then I had an idea. An alternative for him. It was a “New Plan,” but I didn’t want to call it that.

It was risky, because I didn’t want him to think that I was rewarding him for his behavior. But what I hoped to accomplish was to help motivate him to regulate his behavior himself. Some would call it a bribe. But God knows that when you have to change plans on an autistic teen, you better have an acceptable back-up plan.

I sat him down and tried to look into his wild eyes. “Neil, here are your choices. You can be mad about not going to see the movie tonight, but that’s not going to make it happen. Or, you can calm down and come with me to the store to pick out a video rental and get some ice cream, and we’ll see The Day the Earth Stood Still tomorrow.” Then I got up and went to my room to get my boots and coat.

Adam followed me into my room. He looked at me. “Why does he act that way?” he asked with concern and sadness in his voice. “Honey, it’s because the autism makes it hard for him to regulate his emotions and his behavior.”

“Then how is he going to take care of himself when he’s an adult?” Adam asked in a sincere voice.

A chill ran through my body. I looked at him. “We don’t know if he will. But he’s learning; he’s trying. I think he’ll figure it out. And he can live with me as long as he needs to. So can you.”

I put my arm around him and we walked out into the hallway. Neil was standing by the front door, with his shoes and coat on. I looked at his face, and the wildness was gone, replaced by a look that I couldn’t determine. Remorse? Gratitude? Maybe both. “I’m ready,” he said. “Okay, I’ll get my purse and keys,” I said. As I walked off, I heard Adam quietly say to him, “I’m glad you were able to calm down.” And my heart filled with far too many emotions to identify.

A moment later, as I started the car, Neil asked from the back seat, “Can we listen to ‘Don’t Worry About a Thing’?”

“It’s called ‘Three Little Birds,'” Adam said.

“Sure,” I said, inserting the CD. And then we all sang, even Neil:

Don’t worry . . . about a thing . . . ‘cause every little thing . . . gonna be all right . . .

To Hell in a Handbasket

I spend a lot of my time wondering how Nigel’s autism affects my younger son, Aidan, who is twelve. He was about six years old when he first asked, “Why is my brother like that?” as he witnessed Nigel screaming because of a transition. Since then, Aidan has said to me on numerous occasions, “It’s like I’m the older one.” And through the plaintive quality of his voice, I can hear what he doesn’t say: Why does it have to be that way?

I know that sometimes he feels embarrassed by his brother, even though he is reluctant to talk with me about it. I know that he is frustrated by him, how he “never listens.” I try to talk to him, try to cultivate some compassion for his brother by being compassionate towards Aidan. I know it’s hard for him. And I’ve always hoped that with all the difficult aspects of having an autistic brother, he’ll someday be able to see the value in him.

Apparently, that day has arrived. Aidan, my sensitive SPD kid, has a theory. He gets pretty philosophical on me sometimes, and we’ve had some great discussions about existentialism. He thinks that, in spite of the technological advances we’ve made with computers and such, humanity on the whole is not as intelligent as we were generations ago. His reasoning? Not the typical, too-much-TV, too-little-reading response. He believes that humanity is not evolving because autists have less of a chance of procreating. “What do you mean?” I asked him, intrigued.

“Well,” he said, “People like Nigel are really smart. But because they’re different, there’s less of a chance that they’ll get in a relationship and have kids. And some of the other really smart autistic people who can’t talk, there’s even less of a chance for them because they wouldn’t be able to take care of kids if they did have them. But they’re still really smart, inside. And so humanity’s gene pool is less smart because not so many autistic people are able to contribute to it.”

I told him, “If more people were as smart as you are in realizing that, I’m sure it would make a difference.”

Dinner at Our House

The following uncensored conversation took place in our dining room tonight:

Nigel (seated at table): I don’t want hot dogs tonight. I want to choose what I want for dinner.

Aidan (seated at table): What’s with the whole wheat buns? You know I hate these.

Me (a few feet away in the kitchen): I have work to do tonight, so I made something quick for dinner. [I start grating cheese on the nachos I am throwing together making for myself. The boys are silent for a few minutes as they eat.]

Aidan: Stop staring at me!

Nigel (matter-of-factly): I’m going to say something to you. I’m making eye contact.

Aidan: Well you don’t have to look at me!

Nigel: I’m going to build a time machine and go back in time to stop JFK from being assassinated.

Aidan: Time machines don’t exist.

Nigel: I’m going to invent one.

Aidan: It won’t work.

Nigel: I’ll go back to November 22, 1963 . . .

Aidan: I don’t even care, Nigel.

Nigel:  . . . and I will save him.

Aidan: Stop staring at me!

Nigel: I’m making eye contact because I’m talking to you. It’s a social skill.

Me: Aidan, if he’s talking to you, it’s okay for him to look at you.

Aidan: Well, it’s rude! [He stands up and walks over to the kitchen counter where he deposits his dinner plate with the untouched wheat buns still on it and goes to his room. Nigel, meanwhile, continues laying out his plans for thwarting the JFK assassination.]

I take my nachos out of the oven and sit down next to Nigel, who has eaten his whole wheat buns. He tells me his ideas, like suggesting to JFK that he use a “decoy” in the car. I suggest having him re-route the motorcade. “That would make the assassins suspicious, Mom.” I suggest that an inflatable President in the car would as well. “It could be mechanized so it would wave.” All this time he is making perfectly appropriate eye contact with me. He is conversing. And I’m trying not to dwell on the fact that my other son stormed out of the room (thanks, puberty) yelling about the very thing that Nigel has so diligently been trying to accomplish.

Someday, we will all sit around this table at the same time, all with the same food, and we will converse, and we will not have accusations of staring and rudeness flying around. It will probably happen right around the time that Nigel invents his time machine.

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?!