Tag Archives: Siblings

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

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 😉

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.”

One-On-One

Nigel is at Scout camp this week with his dad, which is something they did last summer that they enjoyed. I’m glad that his father was able to do it again with him. It allows them to have some one-on-one time, and now Aidan can have some one-on-one time with me.

One-on-one can be an elusive (my euphemism for nearly impossible) concept for single parents, especially any whose other parent lives seven hundred miles away. But one-on-one time with parents is so important for kids. It makes them feel like a priority when their parents have carved out time for them, and it teaches them to do the same for people in their lives as they get older. In special needs families, the typically-developing children often feel like they are fending for themselves because their parents need to spend so much time tending to the needs of their sibling, going to therapy appointments, doing damage control. Often, the siblings take on some of the damage control themselves, or they take on more responsibility around the house. Aidan has on several occasions told me that he feels like the older brother, even though he’s younger. He’s had to explain his brother’s behavior many times to peers, and has done so with patience and respect. I have extolled his virtues and those of other siblings in a previous post, and I will continue to.

So this week is Aidan’s week. We are watching all six of the Star Wars movies, one each night, and today I rented a video game for him that he had a lot of fun with (Lego Indiana Jones). We bought a pint of raspberry sorbet for dessert, and we made plans to go river rafting on Saturday. As we sat on the couch tonight watching our movie (we’re on Episode 2), he leaned up against me and began gently, methodically scrunching handfuls of my hair in his palm. He has done this for years, I think as a bonding ritual that appeals to his tactile sensitivity. After a minute of doing so, he said, “I’m so happy to be able to squeeze your hair again, Mom.” I told him I’m glad he can do it again too. I’ve missed it, among many other things.

Sibling Angst

Aidan

Aidan: Why the heck, Nigel, is your stick in my room?

I overheard Aidan say this last night as I was walking down the hall, and I empathized. I, too, have found Nigel’s sticks in many places throughout the house, including the kitchen, the living room, the car, my desk, and my bed. Nigel’s stick obsession has probably been lifelong, and to the best of my knowledge, neither he nor anyone around him has ever lost an eye, thank God. I’m not sure where this obsession stemmed from, but it’s most assuredly not abating any time soon. And I bet one of the things he loves about Scouts is being able to handle sticks on a regular basis.

But the real reason I’m writing this post tonight is to highlight Aidan. He’s been feeling a little like second fiddle lately, aware of all the writing I’ve been doing about Nigel on this site, even though I’m careful to minimize the screen when he (Aidan) comes in the room. He’s been pretty verbal about his feelings, too, accusing me of going easy on Nigel and not being fair, playing favorites. I try to spend as much alone-time with Aidan as possible, let him know how loved and important he is, but I can imagine it must be so hard for him. What’s not fair is that he’s the younger brother and he always feels like the older brother. What’s not fair is that as much as I try to ease the difficulty of him having a brother with special needs, it’s still there. And it always will be.

Siblings are the unsung heroes of the special needs realm. Parents, therapists, caregivers, and teachers are openly praised – and deservedly so – for all their efforts with those they work with and care for. But the siblings are not often highlighted, and they should be. Some siblings have had to share a room for years and learned to tolerate and sleep through the noises and habits of someone who doesn’t talk, or whose speech is echolalic. Some siblings have gone to the same school and had kids come up to them, many times, to say, “Did you hear what your brother did today?” And in spite of all that and so much more, they take it in stride and learn to love this person who seems so different and strange and often annoying. The siblings know that even if they’d like to poke their autistic brothers in the eye with the very sticks they leave in their rooms, it’s just another thing they’ll have to live with, and they do. Maybe not without exasperation, but with acceptance nonetheless.

Aidan, I’m so proud of you.

The Autism Club

When I was in high school I had a good friend I’ll call Eddy. Eddy and I were in several of the same classes since freshman year, and by junior year, we had become pretty close. We never dated, but we talked a lot, and one day during class he ran out, visibly upset, and the teacher suggested I go check on him. I found him sitting on the steps of the side entrance of the building, and I sat next to him and gave him a hug. He told me that he was coming to terms with the fact that he was gay. He didn’t know how to tell anyone; he felt confused and a little scared. I assured him I would be there for him.

Months later, Eddy felt better and more sure of himself. His family had responded positively to the news and his friends supported him. He said that he couldn’t believe that it was happening to him. He had read and heard about people being gay, but until he acknowledged that he was, he never realized what it would be like, how it would affect him. He said that he felt like now he belonged to The Gay Club. And that it would determine the rest of his life.

I certainly didn’t feel it at first, but over the years I have come to realize that with my son’s diagnosis I was granted lifetime membership in The Autism Club. I had read and heard about autism, but I had no idea what it was like until, through him, it became present in my life. I never realized how that would affect our whole family.

I’m sure it’s the same for any parent of a child with a disability. You start going to all the IEP meetings, the team meetings with therapists, the therapy appointments, dealing with trying to take your child out in public, finding a good fit with a program or school and changing frequently when it doesn’t fit. You come to terms with how the disability affects all the family members, now and in the future. You realize that your lives are going to be different than those of your neighbors, and even your friends. You wonder how it will affect your other child, having a special needs sibling.

So you go to the meetings, you do what you need to do, you give attention and show empathy to your other child, and somehow, as the years go by you realize that you are functioning, you are doing this. Life goes on. It’s different, it’s not how you thought it would be, not what you would have wished for yourself and your children, but it’s okay.

Some might think I’m trivializing the experience by calling it The Autism Club. It is in no way trivial, and I know that only too well. It affects me deeply. I realize that I’m not the one who lives with it, but I am connected for life to the one who does. There are millions of parents of autistic kids, all going through what I go through. And that makes me feel like we’re all part of some special club or association. We didn’t ask to join. But we’re making the best of it. And it’s good to know that we’re not alone.