Random Thoughts during a Meltdown

Mushroom Cloud

• It’s only a video game. Why can’t he see that? He has a lot of others; he doesn’t need to play this one.

• Why would his older brother forbid him to play this game? “It’s mine. I bought it with my own money, and I don’t want anyone else using it.” This is such a hard policy to enforce when you are one of six children. But he seems oblivious to how much anguish he’s putting his brother through. That part of the equation doesn’t enter into his calculations.

• Ah, the two-edged sword of autism! Perseveration and emotional dysregulation on the one hand (the younger brother), and a cold, hard adherence to fact and logic on the other (the older brother).

• The poor kid! He can’t stop crying. I know I shouldn’t talk yet. Just keep rubbing his head and let him get it all out. Still, there are so many things I want to tell him. Even once he does calm down, there are still a few things I’ll have to keep to myself. Like my fear that he may never find a way to take control of his own emotions. Like my reluctance to think about the kind of future he may have if he doesn’t work through this stuff.

• Okay, so we’ve been up here in my room for, what? Nearly thirty minutes. Dinner is getting cold, and I’m hungry. But this boy needs help. He was yelling at everyone, throwing things, and shouting me down every time I tried to calm him down. Now he’s just crying quietly, bemoaning his fate and asking why his brother has to be so mean to him. Give him a few more minutes, and he might shift a little more.

• You know, meltdowns are curious things. You can’t just say, “Oh, he’s just having a meltdown; he’ll be back to normal in a few minutes.” I used to say that, but I don’t think it’s fair—to him or to me.

—It’s not fair to me because it keeps me trapped in the mode of thinking that this isn’t his “normal,” that these are just aberrations to be endured when they crop up. Kind of like when you get the flu once every few years. So every time this happens, it takes me by surprise. “Where did this come from?” As if I didn’t know. And that makes it all the more draining emotionally.

— It’s not fair to him because I’m not helping him learn how to deal with these things. He’s getting older now—he’s into his adolescence—and he’s going to have to start figuring himself out. I can’t be there to hold him every time something goes wrong. He needs to learn how to stand on his own two feet. But it doesn’t occur to me until we’re in the middle of a meltdown. Then, it’s too late to make any progress.

— It’s also not fair to hold him to expectations that he cannot fulfill. That will only make him feel guilty and inadequate.

—At the same time, his oldest brother has been through a lot of these behaviors and has come out the other end. Granted, he is not as severely affected by ASD, but still he is leveling off. I wish I knew what the future holds for this child of mine!

• This is who he is. At least for right now. Meltdowns are part of his make-up, not just random things that descend upon him. He is autistic, and that means he will get overwhelmed. He will take things too literally. He will get overwrought over issues we consider minor. He may never get over it. Maybe he will, but it’s not a sure thing. Anyway, it doesn’t matter. How can I help him right here, right now? And tomorrow and the next day, how can I teach him?

• Okay, now he’s moving into quiet, occasional sobs. He may be ready to talk. Maybe I can walk him through what happened so that he can get just a little bit smarter, just a little more self-aware. “What do you think, son? Can we talk about this?”

• Dammit! That made him begin crying again. I wish I knew how to read him better. I hate being the one to push him over the edge. Not because dinner is still waiting—stone cold by now—but because this is only going to make him feel worse about himself.

• Back to his older brother. What should I do about him? I know if I talk to him about sharing and being generous, he’ll use his [flawed] logic and his [unnecessarily] strict sense of right and wrong to push back. And when he pushes back, he really pushes back. If I don’t address this, he’ll lose another opportunity to learn how to understand other people and their emotions.And I’m getting tired. And really hungry. How far do I push him? How can I reach him and help him think with his heart as well as with his brain?

• Oh wait, the boy is coming around. He was hunched over himself on the bed; now he has unwrapped himself and is lying down with his head on my chest. Progress! I don’t have to keep rubbing his head now. I can just grasp his hand and give it a reassuring squeeze.

• “It’s going to be okay, son. Don’t worry; I’m not mad at you. Are you ready to go down and have dinner? Yeah? Okay, let’s get something to eat.”

• Well, the fries are cold now, but at least the BLT is still okay—it’s a sandwich, after all. There he is, quietly eating. His brothers and sisters have already left the table. Now it’s just him and Katie and me. She calls him over and gives him a big hug. He smiles, somewhat sheepishly. She speaks words of consolation and encouragement to him. God, I love her! She is so good at mopping things up.

• Now he comes over to me, wraps his arms around me, and doesn’t let go. God, I love this kid! Whatever happens—meltdowns or no meltdowns, the future be damned. Right here, right now, I love my son. Just like I loved him when he was crying. Just like I loved him when he was throwing his fidget spinner across the room. Just like I’ll always love him. No matter what.

Pray for Us Sinners . . .

My little girl (10) was having a rough time at Mass this morning. Anxiety about other family members’ struggles became too much, and she couldn’t get seem to stop the negative thoughts. Misperceptions and anxieties then led to her acting out in an angry/sad combination that had begun to wear me down as well. She feels everything so deeply that it’s like she takes on everyone else’s burdens.

But then halfway through the Mass, she asked if she could go to the back of the church, where a little alcove dedicated to the Virgin Mary is (pictured above). “I can’t stand being here,” she snapped.

“Only if you promise to come back,” I said. I didn’t want her just wandering around back there. She grunted in assent, and stomped off. She loves drama.

While she was gone, I took the opportunity to try to reset myself in prayer. Heart rate came down. Breathing became more regular. Lumpy throat diminished. A good start.

Five minutes later, as the homily was wrapping up, she came back. Stepping lightly. Smiling. She gave me a big hug and said she was sorry. The rest of the Mass passed uneventfully. Peacefully, even. I felt another lump in my throat, but this one was okay.

After Mass, I asked her what she did in the back of the church. “I just sat there for a few minutes and looked at the statue of Mary.” Innocent. Matter-of-fact. No drama.

“Do you know what happened?” I asked.

“What?”

“You went to Mary, and she prayed for you. She prayed with you. And Jesus answered her prayers and yours. How else can you explain the dramatic change?”

“I guess you’re right,” she shrugged. Then she went off to grab a donut—as if nothing had happened.

Everything Happened.

Now, it would be easy to attribute my girl’s change to her taking a break. It would make sense if you wanted to say that getting away from her siblings and changing her environment was all she needed to do her own reset. But the change in her demeanor was so dramatic that this can’t be the only answer. Not to mention how little time it took for her to turn around.

Besides, as a Catholic I believe in the Communion of Saints and the special role that Mary plays as our spiritual Mother. In fact, many are the Rosaries I have prayed asking for her maternal intervention in my kids’ lives. And on more than one occasion I have experienced blessings from her myself.

That’s the thing about faith. It doesn’t need to “disprove” the other explanations that may be out there. It’s not as if it’s a zero sum game, where you have to ascribe everything to either psychology or spirituality. Faith is capacious, generous, encompassing. It’s also humble. It doesn’t feel threatened when other possible answers are put forward. The Bible may describe God as a “jealous” deity, but this is not the kind of jealousy it’s talking about.

Every special-needs parent has to find the best way to help his or her children and to deal with the unique challenges that he or she faces. As for me, I can’t imagine walking this road if I didn’t have recourse to prayer. I can’t imagine being left with only medical, psychiatric, and pharmacological answers. If my kids have taught me anything, it’s that there’s more to them than the sum of their various material parts. There’s a longing to belong. There’s a drive toward unity and community. There’s a capacity to love and to receive love that goes beyond simple reciprocity. There’s a “fittedness” for heaven that I can see in their eyes.

So it makes perfect sense that when my girl went to spend time with Mary, Mary spent time with her. And prayed for her. And blessed her.

My girl may not think that much happened during those five minutes. But I know that everything happened.

Both to her and to me.

 

Good Golly, Miss Molly

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See that little ball of cuteness on the left? No, no, not the cat. The little puppy in my daughter’s lap. That’s Molly, the latest addition to our household. (For those of you who are keeping count, that makes 6 kids, 5 cats, 2 dogs, and 1 fish. That’s right; our four-legged children now outnumber our two-legged children.)

Why another dog? Because we like chaos, that’s why. At least, that’s what more than a few people must be thinking right now. But there’s a method to our madness. Molly is going to be our family’s therapy dog. We had been toying with this idea for a number of years, but recent events have convinced us that having a therapy dog is more than just a neat idea. It’s a necessity. Too many of our kids are dealing with anxiety and depression in addition to their ASD. Too many of them find emotional regulation a challenge. Too many of them lead too isolated a life and need help in getting out of themselves.

Molly is a mix between a Cavalier King Charles Spaniel and a Cocker Spaniel. That means that she is pretty smart (Cocker), but also a love bug (Cavalier). It means that she will be perfectly content to sit in your lap for hours on end (Cavalier), but she will also love a good romp around the back yard (Cocker). Our hope is that we will be able to train her to recognize when one of our kids is getting too agitated, and feel free to go over to him or her and offer comfort and friendship. We also want her to sense when one of our kids needs a warm, affirming cuddle. And, of course, we want her to not pee in the house.

This is much more than sit, heel, and roll over. Our goal is to get Molly to the point where she can wear a vest and be recognized as an “emotional support” animal. We want to be able to take her out in public, bring her into stores, and even get approval for her to accompany one of our kids to school. So there’s a good deal of work to be done.

Of course, none of us is an expert in training puppies. Which means we’re going to need some serious help. Fortunately, Katie found a married couple who have experience working with kids on the autism spectrum and their dogs—and they’re willing to come into our home to train both the dog and us. This is so important. Training out on a farm or in the middle of a PetSmart can only go so far. Molly will have to become very comfortable performing her job in our home, and it will help our kids immensely if they learn about Molly in their own environment.

Oh, and these trainers are going to work with our older dog, Roxie, too. (That’s her below.) According to them, Roxie is going to train Molly as well, even as she gets some training herself. After all, she speaks dog! So by the end of the training—months and months from now—we’ll have two support dogs.

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So stay tuned. I’ll be giving you updates every now and then. Besides, she’s so cute!

After the Intake

Notebook Writing

So we took our Little Guy to a pediatric hospital in Baltimore to begin the process of evaluating him for ASD. Up to this point, all we had for him was a provisional diagnosis from our psychologist in Florida—about three years ago. She had just begun her own evaluation when we ended up moving to Maryland, and we’re just now getting around to getting something more formal.

Anyway, today’s appointment was “intake”—a bunch of questions about his early development, his family history, his current state, and our concerns. As she asked us the standard barrage of questions, the psychologist also observed our boy in action. But the main focus was on us. For an hour.

It sucked. Not because we couldn’t answer her questions. We could. Not because the Little Guy was out of control. He wasn’t. It sucked because, well, you know why. A whole hour describing our family’s challenges. A whole hour listing our son’s deficits and telling stories about his meltdowns and his sensory issues and his social struggles and his attention deficits.

Poignant Reminders.

Katie did awesome. She always does. Her memory is sharp as a tack. She could recall his early developmental challenges far better than I could. She was clearer on his current challenges than I was. She spends more time with the kids than I do. She works part time, and I’m on a ten-hour-a-day schedule. Plus, she takes more therapy appointments than I do. So what was standard fare for her came flooding over me with a quickness and a matter-of-fact tone that felt like a gut punch.

You see, when your whole household is ASD, you tend not to notice all the details. It’s just part of your normal. We don’t have any neurotypical kids, so we don’t know what standard behavior looks like. After a few years, you begin to glide over the ticks and twitches of ASD. You take them in stride and keep trying to move forward. You get so accustomed to them that you don’t even recognize how many of them there are. That is, until you have to recount them to a perfect stranger with a degree.

So to hear the Little Guy’s symptoms rattled off with precision one after the other . . . well, let’s just say it was hard. Lumpy-throat hard. It broke my heart. Today was a reminder of how tough life will be for my kids—of how tough it already is.

It was a reminder of every tense, contentious, and tearful IEP meeting we ever had. It was a reminder of the friendships my kids have lost due to their social challenges, as well as the friendships Katie and I have lost because of people’s misunderstanding. It was a reminder of all that we are missing out on, like family dinners out or vacations or even peaceful walks in the woods. It was a reminder of the earlier days, when we were both new to this gig and so much more scared than we are today. And it was a reminder of the large amount of work that lies ahead of us as we plan and prepare for our children’s futures. So yeah, it was hard.

I so want to see my kids have the best future possible. I so want to see them thrive and kick ass in the world. I want to see them happy and productive, welcomed and loved. Some have a greater chance at this than others, but none of them will find it easy. All of them will ask the “Why me” question more frequently and with more poignancy than their typically developing peers. That’s why it was so hard.

Mission Accomplished.

Today was also hard because this evening our Little Guy put up a huge, weepy, melt-downy fuss about something he normally enjoys: soccer practice. He was probably worn out from the trip to Baltimore. It wasn’t that demanding in any ordinary way, but it was a break in his routine, and that never ends well. It hurt to see him so upset, but I knew I had to help him power through it. If he could just get on the field and start running around, he would end up having a good time. But the drive there seemed unending. No amount of consoling words or attempts at humor could calm him down. All I could do was keep driving.

We got to the field, and his mood lifted as soon as he saw his team mates. He ran onto the pitch and started kicking the ball around with them. Mission accomplished—for him at least.

It took me a little longer. Once I saw that he was okay, I took a long walk and prayed, my Rosary in hand. “Holy Mary, Mother of God, pray for us. . . .” It helped. A ton.

Now I’m sitting here on the sideline, watching my son. He’s hesitant about mixing it up with the other kids. His kick and his run can be awkward at times. His teammates engage in typical boy humor that he doesn’t quite get. And he takes every misstep of another player far too seriously. Standard Little Guy stuff.

But it’s okay. I’m sitting in the shade of a tree. A cool breeze is blowing. I catch the scent of honeysuckle on the wind. And I know God’s going to take care of us.

Everything’s going to be all right.

How Hard Can It Be? Just Cut It.

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It’s a small thing; I’ve planted seeds that are bigger than this pill. It’s so small that sometimes it can slip through my fingers as I’m getting it out of the bottle. Imagine trying to find this little thing on the floor—before your eager, ever-hungry dog does. Or one of your five curious, playful cats.

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The doctor wants my boy to have only one-half of a tablet every morning. See that line in the middle of the pill? That’s there so that you can split it in half with your fingers. Only it’s so tiny that you can’t get the leverage you need to break it—see the picture above. So into the pill cutter it goes. But not like that. It has to be straight, parallel to the edge of the box so that the cutter on the top can make a clean, even slice. Let me just get my finger in there to straighten it out.

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No, no, not that way. It has to be horizontal, not vertical. Vertical is too thin. Here, let me try it this way . . . almost got it . . . no, not like that . . . hang on, I think that’s right . . . oops . . . so close . . . let me try again . . . uh . . . Dammit!

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Okay. There it is. I have no idea how it got there. But at least it’s ready now.

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Mission accomplished.

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Twenty-nine pills and a half-hour later. I know it’s only breakfast time, but I need a drink.

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Failure Is Not an Option

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A couple of days ago, I posted a picture of my oldest daughter and described her struggles with anxiety and school. I talked about how proud I was of her for fighting—even when she is fighting me. Although it looked like she was being obstinate and resistant, I could tell she was getting the message that she can’t give in.

Well, now it’s my oldest son’s turn. Continue reading