Tag Archives: loneliness

A Perplexing Plethora of Plushes

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With great pride, she posts this picture on Facebook, reveling in her massive collection of Pokémon plushes.

I see the post, and all I can think about is the anxiety, conflict, tension, and melt-downiness related to these infernal creatures.  

• The extra backpack stuffed with as many as possible to help her make it through a school day. 
• The destruction she has wrought to other kids’ plushes in order to fashion her own copycat creations.

• The often tear-filled way she has obsessed over the next plush that she absolutely, positively has to obtain within the next few days.

• The huge mess she has created in her bedroom because she needs all these creatures around her when she sleeps–and she needs them to be in a heap, not in some orderly grouping.

However . . .

• She sees the post as a way of celebrating her best friends and most constant companions.

• She has found countless hours of consolation with these plushes. Especially in times of stress and fear.

• These creatures have helped her maintain a good portion of her innocence and childlike nature well into her teenage years.

• They have sparked many a creative story-telling session. Granted, the stories exist in her mind and are rarely shared with other people. Still, the creativity abounds.

• She knows that she’s different from most of her peers, and she suspects that these creatures will always keep her company, no matter how many or how few her human friends are.

• For better or for worse, each of these plushes plays an important role in her life.

So here we are. I love this child like mad. She has pried open my brain in ways I could never have imagined. And the wedges she has used are often these soft, cuddly, beguiling, bedeviling . . . things.

Serenity Now!

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As my kids are getting older I’m finding myself in an unexpected position. You see, five years ago, when the diagnoses were coming fast and furious, I went through somewhat of a crisis of faith. So many challenges were cropping up. Fears for my kids’ futures began to loom large. I grieved the loss of my vision for my family. But then came a period of relative calm. I came to a clearer understanding and acceptance of our situation. I resolved to fight for my kids’ rights at school. I determined that nothing would come between Katie and me as we took up the challenges that we faced. I had, to a large degree, made peace with it all. Yes, it was going to require extra work to help our kids be successful, but by gum, we were going to do it. We were going to be the autism family!

But there’s something about this autism thingy that took me by surprise. It shifts and swirls. It’s never the same thing year after year—or month after month. I’m finding myself surprised at some of the challenges my kids are facing as they get older. Some are completely new, while others are just more intense versions of what we saw a few years ago.

So while I honestly have made peace with a number of aspects of our family’s make-up, I’m also feeling more at war with others. Not war as if I’m fighting against my kids, mind you. More like a war within myself in terms of embracing our latest “new normal.” Let me try to explain.

Serenity Now . . .

I’ve made peace with the fact that my kids are going to be different. In many ways, I enjoy their differences—their quirky take on life, their brutal honesty, the innocence with which they approach life. I’ve also made peace with the fact that I’m going to be advocating for them and teaching them to advocate for themselves for quite a few years to come. Even though it sounds like a cliché, different, not less really does describe our kids as well as the way we look at them.

I’ve made peace with the fact that my family is going to stick out, and not just because there are so many of us. For instance, on those rare occasions when we go out to eat, I’ve come to expect the unusual. Like one kid will get up and start wandering around the restaurant because he or she can’t sit still. Or another will have to go stand outside halfway through the meal because of sensory overload. Or a third will end up curled up on his chair or under the table to avoid the noise. People will stare, but it doesn’t bother me anymore.

I’ve made peace with the fact that members of our extended family, well-intentioned and big-hearted as they are, won’t always get it. It doesn’t bother me that I’ll probably be explaining things until the day I die. It doesn’t bother me, either, when one of them offers unsolicited advice based on what works for his or her neurotypical child. It doesn’t even bother me that our kids aren’t involved in all the extracurricular activities that their peers enjoy. That’s probably because I’ve also made peace with the fact that we’re going to be spending more time in therapists’ waiting rooms than on soccer fields and tennis courts.

Finally, I’ve made peace with the fact that money will always be tight. With therapies and related health problems, our expenses are more than the average family’s. Plus, we’ve got six kids!

Insanity Later . . .

I haven’t made peace with the thought that our kids still have a long way to go. Now that our oldest two are well into adolescence, I’m getting a sense of the wild ride that comes when you mix autism with hormones. I’m also getting glimpses of the difficulties they’ll face as they lurch toward independence. I don’t know if I’ll ever be ready for those. Schools have behavioral counselors. Churches usually are welcoming, understanding places. But employers—well, that’s a completely different story.

I haven’t made peace with the other diagnoses that have come attached to our kids’ ASD. It’s bad enough that they have social and communication deficits. Do they really have to deal with crippling depression, intense mood swings, OCD, and emotional dysregulation? Does it really have to be so hard for them?

I haven’t made peace with the fact that many of my kids will find it hard to establish and maintain relationships in the real world. The thought of them being alone kills me—even more than the thought that some of them may never leave home. It kills me to think about all the people who will overlook how cool and kind and sharp and loveable our kids are. Our kids deserve to be loved!

Finally, I haven’t made peace with the way I let our ASD-dominated life close in on me. We don’t often do things as a family, because some of our kids will have a hard time. We don’t live too far from Washington, DC, with sites like the White house or the National Air and Space Museum. But a few of our kids simply cannot handle crowds. So we don’t go. Our hometown is surrounded by mountains and woodlands. But a few of our kids become very anxious when exposed to the sounds and smells of nature. So we don’t go. Just the idea of taking some kids to the movies makes me break into a cold sweat. I know there are ways to help them through all of this. I also know which ones might do well in a museum and which ones might do well in the woods, so I can always divide and conquer. But I just don’t have the fight in me. I’m often too worn out by the daily challenges of ASD life to even consider trying something new.

Dammit!

I know, I know. I’ll probably end up making peace with these things, just as I did with the others. I know, too, that God isn’t finished with me or my kids yet. But dammit, wouldn’t it be nice to catch a break every now and again? Does everything have to be so difficult?

I guess in some ways I’m like every other parent. I want the best for my kids, and I hate it when they struggle. The only difference is that my kids have more struggles than the average kid, so I have to be stronger to help see them through it.

And believe me, I will. Just let me catch my breath first.

Dispelling the Cloud, Removing the Chip

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Oriole

So I was out of town a couple of weeks ago at a meeting of the Catholic Biblical Association. It’s an annual gathering of biblical scholars that I attend as an “associate” member—someone who isn’t really a scholar but who works with the Bible on a regular basis and who would benefit from hearing research reports from the full members. One of the things I enjoy about this gathering is the collegial atmosphere. For the most part, everyone is treated equally: the great, the near-great, and the just plain silly. You are not looked down upon if you don’t have a PhD; you are welcomed just as much as the most celebrated, published scholar.

At the conference, I had the pleasure of sharing dinner with an old friend whom I hadn’t seen in a few years. Like the others, he is a respected scholar and researcher, but he is also a born teacher who brings a pastoral approach to his studies. Plus, he’s from Canada, so he has niceness encoded into his DNA. The last time we met, I had told him a little about our fourth child, whose high-functioning autism we were just learning about. This was our first diagnosis. We didn’t know about the others until later on. So it was only natural for him to ask me this time how our boy was doing and how the rest of the family was adjusting to his uniqueness.

That’s when the discomfort began. Should I tell him that all six of our kids are on the spectrum? Do I have the emotional energy to give a minor tutorial in the ins and outs, the mysteries and challenges of ASD? I’ve been down this road before with a lot of other people, and I was getting tired of it.

I debated changing the subject, but I respected this fellow too much to stay shallow. So I dove in, with a lump in my throat.

An Impromptu Community.

As it turns out, I didn’t have to worry. My friend, along with a couple of others at our table, listened carefully and asked insightful questions. They showed genuine concern for our kids. They shared their own experiences and understandings of autism. We ended up talking together about how God is and is not at work in challenging situations like mine. So what began as a general “How’s it going” conversation grew into a shared reflection on mercy, grace, compassion, justice, and perseverance. It was as if we had formed an impromptu community of faith.

Mind you, I did feel somewhat uncomfortable being the center of attention for so long. I was afraid that the conversation would decline to the kind of pity and mock-sympathy that I detest. But another part of me thoroughly enjoyed the conversation. There was something distinct about it. Everyone there was immersed in Scripture and its teachings, so our discussion had a strong faith dimension to it. Of course, not every Scripture scholar is a saint, but it was clear that these people had taken Jesus’ words to heart and were striving to live in the love of God. That’s no small thing.

The Cloud and the Chip.

Rather than feeling drained, as I usually do after “raising autism awareness,” I left the conversation feeling energized and encouraged. And that got me thinking. You see, I’m not used to having such genial discussions about my kids—and especially, not with people who don’t know me well. I have spent so much of my time the past few years advocating for them in a cash-strapped school system and among neighbors who (with a few exceptions) didn’t have patience for anything outside the status quo. So I wasn’t expecting such a kind reception of my story.

Add to that the fact that I didn’t have that many friends in Florida. Katie and I spent so much time with our kids, and that made it hard to meet new people. Plus, we lost a couple of friends due to our kids’ challenges, and these losses left me defensive, guarded, and cynical. I didn’t want to get to know anyone else. “Why bother?” I’d think. “It’ll only turn out bad.” I didn’t realize it until after having left Florida, but I had spent the better part of four years walking around with a cloud over my head and a chip on my shoulder.

A New Beginning?

That seems to be changing now. A couple of months ago, we moved back to Maryland, where Katie and I both are from. It’s something we had been wanting to do for quite a while, but never had the chance. We knew that Maryland schools were better, and most of our family is there. So when the opportunity finally arose for me to be transferred back to my company’s home office, we grabbed it—and we’re really glad we did. The school year hasn’t started yet, but all of our preliminary meetings have been extremely encouraging. Accommodations we could only dream of in Florida were offered to us without our even having to ask for them. Programs are in place here that we had never heard of down South—programs to help ASD kids not only survive but thrive.

What’s more, and I don’t exactly know why, there seem to be a lot more families with ASD in our new hometown. Maybe it’s because of the higher population density. Maybe it’s because there are more doctors here who are trained to spot the signs of autism. Or maybe the parents are just better informed. Whatever the reason, that increase in numbers brings an increase in awareness and acceptance. So we’re feeling like we fit in here better than we did down there. It doesn’t feel as lonely.

And then there’s family. All of my siblings are within an hour’s drive, and most of Katie’s siblings are even closer. Plus, Katie’s parents are just a ten-minute walk away. So there’s a lot more support where we are now, and our kids are surrounded by more than twenty cousins ranging from age three to twenty-six.

All these factors have helped me relax a little bit. With increased awareness and acceptance, our kids have a better shot. With family around, we have ready-made friends and social situations. With a more accommodating school district, we hope to have fewer fights and less tension. A few days ago, I wrote that our family’s future is beginning to look brighter. Maybe I’m just fooling myself. Maybe we’re in a bit of a lull right now, a respite between crises. Or maybe with this fresh new start Katie and I are able to see our situation and our kids in a different light. Whatever the case, I’m enjoying it—almost as much as I enjoyed my conversation with those biblical scholars who reflected a God who loves and cares for his people.

Come, Lonely One

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As the season of Lent begins, I thought I’d go link to a post on the website for the Jesuit magazine America. On their Scripture blog, Fr. Terrance Klein, a professor at Bonaventure University wrote:

The grace of insight often seems to accompany great sorrow, the sort we suffer alone, because no other can fully feel our pain. . . . The 11th century Byzantine Christian monk, Symeon the New Theologian, viewed suffering in deeply personal terms: the loneliness of suffering was a form of intimacy with God. In his prayer to the Holy Spirit, he wrote, “Come Lonely One, to him who is alone.” . . . When suffering cannot be avoided, the Christian should do more than accept it with resignation. However long and arduous the effort to do so, we should receive suffering as a call to intimacy with the Man of Sorrows.

I like this reflection, because the image that Klein paints—an image of suffering as a call to intimacy with God—helps me make some sense out of the difficulties that my kids on the autism spectrum are facing and will likely face in the future.

At the risk of sounding maudlin, I know that my kids are going to encounter more challenges, more setbacks, and, to put it bluntly, more suffering in this world than their neurotypical peers. It’s just the way things are. They will never quite fit in; they will likely have fewer friends. Some of them may never marry or have children. They will be more alone than most of their peers. The world is unfair, and in some ways my kids got the short end of the stick.

But it’s not just the social aloneness they will face. There’s also the aloneness that comes from knowing that you’re different. You feel that difference deep down. But if you have an autism spectrum disorder, you may not know how to process it. You sense that people don’t “get” you. You’re not even sure that you “get” yourself. Even though you sense that it’s not true, you still can’t help feeling “less” than the people around you, and that causes an inner isolation that can get right down to the core of who you are

Accepting the Invitation.

According to Fr. Klein, you have two options when it comes to responding to this kind of aloneness. You can shrug your shoulders and accept it with a sad resignation. Or you can receive it as an invitation from God. My goal as a parent is to help my kids accept the invitation. I want to assure them that no matter how different they may feel, no matter how harshly they are judged, no matter how little they think they fit in, there is a deeper truth at work in their lives, a much more hopeful truth than the false truths they feel tempted to accept.

Here are some of the dimensions of this truth.

• There is a mystery to their autism—a mystery that involves an invitation to a deeper relationship with God. In their aloneness, my kids have a great opportunity to identify with, and to discover more deeply, Jesus, who was the loneliest man in history. They have the chance to understand that Jesus was more different than anyone else who walked the earth, but he never let his difference isolate him. Instead, he continued to pour out his life for other people, hoping to bring them closer to God. All this means  that my kids have the opportunity to find their stories in Jesus’ story. As isolated as they may feel, they have a unique opportunity to become men and women for others, just as he did.

• I believe that if they grow up in an environment of faith, people who face more than the “fair share” of hardships end up more reflective. They are able to look at the world from a critical distance, and to see life with a deeper and more stable set of priorities. This makes them more apt to come in touch with the deeper regions of the heart, where God dwells, and to find there the strength and good humor they will need for their challenging lives.

• Drawing from the writings of St. Symeon, Klein talks about the “grace of insight” that comes to those who suffer. It’s a grace that can make sufferers into prophetic voices and prophetic witnesses. This tells me that simply by the witness of their lives well lived, my kids can testify to a greater purpose and power than what the average person expects. They can point people to the deeper and more meaningful dimensions of life. In short, their inwardness, their relationship with God, can make my kids into signs of God’s presence and love—if they choose to accept his invitation

Why Not Why?

In an earlier post, I said that asking why so many of my kids have this challenge was not nearly as important as asking how I could help them make the most of it. Well, this post from Fr. Klein warns me not to be so sure. Why isn’t always a bad question to ask—and it’s not always a question God hates to answer.

And that’s a good thing, because the question won’t go away. Some of my kids are beginning to ask this question, so I may as well try my best to find some answers to help guide them.

In the mean time, it’s encouraging to know that God is with my children in a special way. As Fr. Klein wrote, no other person can fully feel their pain. But Jesus can. And he is inviting them to discover his answers to their questions. I only pray that I will be up to the task of helping them find the answers—to accept the invitation that God has given them.

So why did this happen? Is it possible that God has something important for my kids to accomplish? That he has invited them to know him with a special intimacy, and to become his prophetic voices in this world? I can’t rule this out. Of course, I don’t pretend that my kids are superior or more spiritual by nature. I have daily evidence to the contrary! But maybe, just maybe, they have a special calling to manifest Christ’s presence in the world. Maybe God gave them this cross so that his strength can shine through their weakness and otherness. Maybe he wants to teach them peace and intimacy with him in the face of their isolation so that they can radiate that peace to the people around them. In the mean time, I will continue to pray that Jesus, the Lonely One, will come to them when they feel the most alone.