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

The Struggle Is Real

 

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Remember my story about my girl having a couple of seizures last summer? Remember my story about how hard it was for her to go to Mass during the summer? Well, the saga continues to unfold. Continue reading

When Darkness Isn’t Really Dark


I have a very creative kid. Well, more than one, actually. But the one I’m talking about right now is a sneaky kind of creative. As in, he stays quiet, under the radar, and then out of nowhere, he surprises you with something that blows your mind. Like this picture. He showed it to Katie last week in a very nonchalant way, as if it wasn’t a big deal. In fact, he had drawn it a few weeks back, but never thought to show it to anyone. Clearly, his still waters run very deep.

When Katie first showed me the picture, I was more worried than proud. It’s such a grim, depressing subject, and the title was alarming . “Is this what he thinks about his life?” I wondered. “Does he really feel trapped inside his anxiety?” But Katie saw it differently. She was super impressed with his artistic talent–the shading, the level of detail, the combination of hard, rectangular bricks and the softer, rounded glow of the light. “I knew he was good at building things like Legos,” she said. “I just never knew he was good at illustrations as well.”

That helped. Frankly, I don’t know why I was so surprised. We know he has anxiety issues. We know he is keenly aware of his aspie differences, and that he tends to isolate himself because of them. Why wouldn’t he try and find some outlet? Besides, there are far worse things he could do, like keep it bottled up inside until he implodes. Still, I was cautious. 

So I asked him about it, and he confirmed that this is how he often feels. He was so matter-of-fact about it, too. As if he were a clinician describing a diagnosis to a group of interns. No sadness. No desperation. No obviously personal investment at all. Just the objective, rational, clear facts. I made sure he knew to talk to one of us, or at least his counselor, if he ever felt really bad, and his answer was classic: “Of course I know that. I’m not stupid.” Again, objective, unemotional, calm, cool, and collected. 

“I’m Not Suffering.”

Now, if you’re an autism parent, or if you are autistic yourself, you’re probably chuckling a bit. You’re familiar with “professor syndrome.” If you’re a parent, you’re also likely familiar with the tendency toward catastrophizing every new insight into your kid. You know you shouldn’t, but you can’t help yourself. It’s a gut reaction. 

At any rate, I asked him if I could share the picture and the story behind it. He agreed–too quickly, I thought. So I pressed him a bit, explaining what that might mean. “I may have to give some background, including that you suffer from anxiety and depression.”

“Don’t put it like that,” he said.

“Why?”

“Because I don’t suffer from it.”

“What do you mean? You’ve told me yourself how depression can make you stay in your room all day and keep you from getting together with friends.”

“Yeah, but that’s not suffering. That’s coping.”

“Okay, so what’s suffering?”

“Well, I haven’t killed myself, have I?”

I was so surprised by this that the only thing I could do was laugh. I could tell he was completely serious, but the answer was so extreme and yet seemed so obvious to him that it was comical. 

The best part? He didn’t get offended by my laughter. He just flashed me a sheepish smile and laughed a bit himself. 

This kid’s going to be all right.