Tag Archives: Self-Esteem

One Good Thing

“How old was I when I started to talk?” Nigel asked me one day last week as we drove to the grocery store.

“You were five when you started,” I told him. “But it took several years of learning before you could talk as well as you can now.” I waited for more questions, but that was all he seemed to want to know at the moment. I asked him if he could remember how it was for him before he could talk, if he remembered what it was like when his hearing was so sensitive that many sounds were painful to him, and he said no. “I don’t remember those days.”

But the fact that he talks now, and that he goes online to watch YouTube videos, makes me worry that someday he might stumble across the “I Am Autism” video. And since he is aware of the fact that his parents separated within a year of his autism diagnosis, and then divorced, how will he feel when he hears the ominous voice saying, ” . . . I will make sure that your marriage fails“? His self-esteem is fragile enough, and his own acceptance of his autism has been difficult at best. This video would destroy any gains he might have made. I couldn’t stand for that. Nor do I ever want him to feel responsible for his parents’ divorce.

So tonight, while relaxing on the couch, I gently broach the subject by asking him if he’d ever seen any videos about autism. He tells me that he hasn’t looked, and I say that’s fine. Then I describe the “I Am Autism” video. I tell him that it takes the challenging and difficult aspects of autism and talks about them in a threatening tone. That it blames divorce on autism.

Nigel says, “Probably the people who think that are just insecure.”

“Yes, Nigel,” I say, stunned.  “I think you’re absolutely right.” Where did that come from? How could he instinctively know that? His keen, sensible awareness shocks me. But I have to continue. “I just want to make sure that you would never think that your autism was the cause of your dad’s and my divorce.”

“I don’t,” he states.

“That’s good,” I say. “Because your autism had nothing to do with the divorce.” And then, because we seem to be on a roll, I go on. “I don’t want your self-esteem to suffer because of videos like that. Autism is challenging and difficult sometimes, as you know, but it’s part of your personality and what makes you so unique. But I know sometimes it’s hard for you to accept it. I remember a year or two ago, you would get upset sometimes and say that you hated the autism and wanted to rip it out of your head – ”

“Well, that was just a phase,” Nigel interjects.

“You mean you don’t feel that way anymore?”

“No. I feel fine about it now.”

I reach over to hug him, and he stiffly accepts. “I’m so glad to hear that,” I tell him, my voice catching. For years, autism had caused self-loathing for my son. Maybe something like that should have been mentioned in the video. Maybe it should have been mentioned that autism is not just a struggle for the family members. It’s an even bigger struggle for the ones who have it. Yet they continue to find ways to work with their autism, not against it. And with time, therapy, and a lot of hard work, they can even come to accept it.   

I know that we still have a long way to go. I know that the social issues are going to be a continuing source of strife for my son, just as the sensory issues and language deficit used to be. But there’s one huge thing in place that’s going to help with that – his self-esteem. And that’s one good thing about the “I Am Autism” video – it was the catalyst for an amazing conversation with my son. Not only do I feel better knowing that he doesn’t blame himself for his parents’ divorce,  but he revealed to me that he has accepted his autism. He no longer feels that it makes him defective. He knows that it makes him different, and he’s okay with that. I feel fine about it now, he says.

The air in our home is not the same tonight. A threshold has been crossed, a truce declared. There is a calmness I don’t recall feeling before. A new ease. Contentment.

I smile, remembering. “Just a phase” he said.  – Oh, how I love him.

Trust

Having a special needs child growing up in my home has taught me more about trust than any other element of my life. Especially with my particular child having such an independent spirit and wanting to do things on his own. The problem is that he does not always have the coping tools and social understanding necessary to navigate many situations he could encounter. And so, as he has gotten older and has started wanting to go places on his own, I have learned that lecturing him on safety issues and wringing my hands while he’s gone are not the best ways to cope with the experience.

Of course, all good parents in general are concerned about their children’s safety and well-being when they’re out doing something on their own. I know how it is with a non-autistic child because I have one. I know that even though I have just as much concern for his welfare, the worry is mitigated. He can handle himself far better in situations where other people are involved, which is almost any situation when someone’s away from home. I don’t worry about him causing problems, or about his behavior escalating. I don’t worry about him reacting violently to insects flying near him. I don’t worry about someone tricking him into doing something unsafe or unlawful. And I’m just as relieved when he gets home safely, but while he’s gone, the worry seems more manageable.

For two years now, my autistic teen has been asking me to let him ride his bike to the local grocery store alone. And for many reasons, I kept putting it off. I just didn’t feel that he was ready. Now, since he recently started riding his bike to and from school every day and has demonstrated that he can use a cell phone properly, I can no longer justify not letting him ride to the store, which is just a little farther away than the school.  One afternoon last week, he asked me to let him ride his bike to the store. I put it off, telling him he had to do his chores first. He did them in record time and asked me again, assuring me that he’d be careful. Out of stalling material, I literally wrung my hands and began breathing rapidly, like the beginnings of a panic attack. Nigel noticed.

“What’s wrong?” he asked.

I hemmed and hawed. Finally, I said it. “I just wish you didn’t want to do this, Nigel. It worries me.”

He paused, and then he made eye contact and said, in his flat but beautiful voice, “Mom, sometimes you just have to trust me.”

I almost gasped. A lump quickly formed in my throat. It was one of those rare lucid moments when he says something so simple, yet so profound. Somehow, he knew exactly what to say. “You’re right,” I conceded. “I think you’re ready to do this.”

“I am,” he said in the same resolute tone.

We then did a quick “verbal social story,” since these days he rarely needs them to be written. I verbally walked him through the route he would ride, told him where to lock up his bike, discussed what he would do in the store, and suggested that he not stop to talk to anyone along the way. He could briefly answer a question if someone asked, but then come straight home. We figured out how much time he would need to get there, get his Silly Putty, and come back. Then he left, and I watched him out the window as he rode away. I visualized a herd of angels surrounding him.

While he was gone, I took his advice. I worked at my desk and just trusted. I trusted that he could do this, trusted that he would be all right. And to my surprise, I actually believed it. I did so well that right about the time I thought to check the time, I heard him rattle the side gate to indicate that he was home, putting his bike away. My eyes immediately welled up and I patted them dry as I rose from my desk. Nigel strode into the house and I went to greet him.

“I did it, Mom,” he said calmly, with a hint of pride. “See? I told you I would be fine.”

“You did and you are,” I said, putting my arm around his tall, warm frame. “I’m really proud of you.”

“Thanks for letting me go.”

I tried not to get misty-eyed again. “You’re welcome, honey,” I said.  How did he know that that’s the hardest part of trusting – the letting go? That, as I discovered that afternoon, it’s also the most rewarding?

Pride and Self-Prejudice

This is a hard post to write. I’m even struggling with how to begin. But it’s something that’s been on my mind for a long time, and I want to address it.

Months ago, I had a little free time (ha!), and I was surfing around looking at T-shirts on Café Press. I found one that I really loved, that I thought I just had to get for Nigel. It said “Autistic and Proud.” I got a lump in my throat just looking at it online, just thinking about how proud I am of my son and how hard he works to “be like everybody else,” as he puts it. I’m proud of how far he’s come, from his days of screaming due to sensory issues and not being able to talk. I think he’s wonderful, and so is every other person on the spectrum. Because all of them are trying so hard just to function in this noisy, bright, busy, often intolerant world of ours.

My moment of pride only lasted a few seconds – and then I remembered that the pride is mine. Nigel – and this is hard to write – is not proud of being autistic. No matter how I applaud his efforts, no matter how often I tell him that he’s got a really great brain, no matter how many times I tell him it’s okay to have autism. Here’s the thing: It’s not okay with him. Nigel has a non-acceptance of his autism. Certainly not denial – he knows it, he accepts that it’s part of him. He doesn’t refute it. But he hates it; he even says, “This stupid autism! I want to rip it out of my head” because of his negative social experiences in the past few years. I try to encourage him, tell him the autism is part of what makes him the fascinating person that he is. That I’ll help him as much as I can with the difficult parts. I know that having the diagnosis is good because it helps him to know the ‘why’ of his behavior and the challenges he faces. Maybe later the self-acceptance will come. I hope it does. Because I hate to see him berate himself and blame the autism and have him wish that it wasn’t a part of him.

But I don’t know how to help him get to that point of self-acceptance, other than to just keep doing what I’m doing. It just makes me so very sad. This is one of those hard things. When they respond well to therapy and learn to talk and adapt to their severe sensory issues so that you can actually take them out in public – when and if they can do all of that, autism is still there, making things hard. I think I wrote my recent “positive” post because I just needed a break from the negative. Because I know I’m not the only one in the house experiencing the negative. It changes over the years – but it never goes away.

And maybe that’s why Nigel feels the way he does about autism. He lives with it; he knows some of what it means for him, and most of it has been negative. I try to point out positive things for him – he learned to read at age three (before he could talk, even), he’s very good with maps, he remembers historical facts easily. And that’s all well and good. But at the end of the day, when you’re fourteen and you just want to be like everybody else, I guess it’s hard to be ‘autistic and proud.’ I just hope, with all of my motherly heart, that he’ll get there someday.

Medication Check-in

Yesterday I forgot to give Nigel his Zoloft. All day long I was wondering why he was being so difficult: irritable, non-compliant with any little thing, lashing out, complaining, and then, sometime after dinner, it hit me. I had forgotten to give him his medication that morning.

It was good to note that the Zoloft really does make a difference for him. I had already forgotten (or probably blocked the memories of) how he had been the months prior to medicating him. His anxiety level was so high that he was constantly irritated and often lashed out. I remember one afternoon going into his room and noticing that his desk chair (the kind with the adjustable, pedestal-supported seat on rollers, with a curved metal bar covered in ribbed plastic connecting the seat and the chair back) had been broken. He had ripped off the chair back, wrenching it off of the bolts that connected it to the curved bar. I tried to fix it, but the damage was beyond repair. I ended up removing the curved bar so that the chair is now just a rolling seat with no back.

I asked Nigel what had happened to the chair. He said in a low voice, “It was because of my anger. I feel different from everyone. I have a defective brain because of the a-word.”

He has referred to autism as “the a-word” for a few years now, ever since he asked “What’s wrong with me?” and I told him about autism. That day with the vandalized chair in front of us, I assured him, as I have on so many occasions, that his brain is not defective, it’s just wired differently. I reminded him that he has a very good brain that taught him to read at age three and a half. He seemed to feel a little better.

But since going on Zoloft almost two months ago, he has not destroyed anything because of self-esteem issues. He is more relaxed, more comfortable in his skin. He sleeps better. He no longer eats his hair. He doesn’t talk about his brain being defective. He is happier, I think. It pained me to think of him breaking his belongings because he feels angry about being different, that his self-esteem should suffer because of autism. If Zoloft can alleviate any of that, then I’m sticking with it. Nigel never balks at taking it. It makes me wonder if he notices the difference in how he feels. I think he does. He just isn’t able to put it into words.