Thanks, Mom

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There she is. Mom.

This picture was taken back in 1996, during one of my visits to her and Dad’s home in Sarasota, Florida. I have another picture of her from two years later that means a lot more to me. But I’m reluctant to share it because it contains our entire wedding party, and I try not to post pictures of people without their permission.

Anyhow, the story I want to tell has to do with my wedding to Katie in 1998 and the role Mom played in making it special—as well as the role she continues to play, even though she has long passed on.

A Special Wedding Gift.

Two months prior to our wedding, Mom was pretty sick. The leukemia she had lived with for years was beginning its final march on her system. We weren’t sure she would make it to the wedding. We even began looking into moving the wedding to Sarasota so she could be with us. Continue reading

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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The Ballad of the Bedeviling Bedroom

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See that picture up there? That’s my boy (fourth child, third son, 11 years old), trying to go to sleep in his new bed in his new bedroom. We moved just about everyone around this past weekend. Usually, I would balk at such a thought—ASD kids have a hard time with transitions. But this was a pretty important move for a couple of reasons that I can’t get into right now.

Anyway, this poor boy was having a hard time with the change. He was excited to be moving to his older brother’s (third child, second son, 13 years old) room. The two of them had been roommates a few years back, and they had a blast together. But once he got into the room, he couldn’t cope. Within five minutes of Katie and me praying over him and giving him a good night kiss, he was back in our room, eyebrows knit, hands wringing, voice aquiver. Continue reading

Make Some Noise—Save Medicaid!

This is not intended to be a long post. In fact, it’s going to be very short. Not only is my friend at The Spectral Zone another autism dad, but he’s also a lawyer, and he is very familiar with legislative texts. He has read through the draft American Health Care Act (AHCA), also known as Trumpcare or Paul Ryan’s proposal for the repeal-and-replace of Obamacare. Spectral Dad has found some pretty disturbing language in this bill, language that would restrict or eliminate altogether the Medicaid benefits that many people with disabilities (especially those with autism) are currently receiving. 

I urge you to read his brief analysis of the bill, which is in his blog post here. I also urge you to contact your senators and congressperson to register your concerns about this imminent threat to the autism community—and the disability community at large. Spectral Dad has also included in his post a template for a letter you can write. Feel free to copy his as much as you can, or use it as a starting point for your own words.

The Medicaid provisions in this bill have a good chance of passage unless enough of us stand up and make some noise about it. So get out your pen; dust off your keyboard; pick up your phone. Whatever you do, do it now! From what I understand, the House is planning on voting on the AHCA this Thursday. Time is precious.

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

A Brief, Fantastical Respite

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When I was in high school, I was really into science fiction and fantasy literature. I guess I still am, but I don’t usually get the time to immerse myself in a good novel these days.

Anyway, there was this one fantasy series I read in high school called The Chronicles of Thomas Covenant. The author, Stephen R. Donaldson, imagined the books to be a kind of dark inversion of Tolkien’s classic The Lord of the Rings.

Each book in the series opens with the (anti)hero Thomas Covenant experiencing some kind of crisis that mars him physically just before he is transported to a realm known as The Land. While in The Land, Covenant is quickly healed of his wounds and ends up reluctantly accepting a perilous quest. Lots of action, tension, magic and romance ensue—often quite gripping.

Then, as Covenant to the climax of his quest, something happens to him. He is caught in a battle, perhaps, or a curse is uttered against him. Whatever it is, it leaves him with wounds exactly like the ones he had just before he entered the Land. It’s at this critical juncture that he finds himself back in our world in the exact same condition he was at the start: haggard, numb, bloodied, and exhausted.

A Magical Christmas.

Well, that’s what I felt like the week after Christmas. We had had a rough few days leading up to the holiday, and I was feeling pretty beat up. Nothing seemed to be going right. A few of the kids’ anxieties had gone through the roof, issues at school mushroomed, and a few tight deadlines at work led to late nights at the computer.

But something strange happened on Christmas Day, and it lasted a few days afterward. There were no melt downs. No tantrums. No OCD or anxiety or disrupted sleep. It was absolutely delightful! My own anxiety diminished. I was sleeping better. We even took most of the kids to my brother-in-law’s for a Christmas gathering, and I had a blast because it was completely uneventful. I was sailing along, enjoying life in ways I had forgotten about in the previous weeks.

So far, so good. But then by December 30, things began sliding downhill again. First one kid went south. Then another. And another. Slowly over the next three days, we re-entered our “normal” zone with the melt downs, the perseveration, the communication glitches, the anxiety—the whole nine yards. Even work issues flared up again!

By lunchtime on New Years Day, I was back to my usual self: weary, furtively looking back and forth to see who was going to erupt next, steeling myself for the inevitable, even feeling that familiar lump in my throat after helping one of the kids through a tough time.

So Sunday had come, and I was ready to start back at work as if nothing magical had happened at all. Just like Thomas Covenant.

Go Easy.

Now, before you go feeling sorry for me—or telling me to suck it up, Buttercup—let me say this: I suspect that many parents of special-needs kids can relate to this cycle. On one level, every parent appreciates the fun times, the easy times, the magical times. But there’s a poignancy when it happens for special-needs parents because for those few short days, they know what the rest of the parenting world feels like on an average day. They get a glimpse of the “normal” that most parents experience most of the time, and it feels good. But then they return to their own special “normal,” and they have to put on their big-boy pants again.

I’m not going to sugarcoat it. It’s hard. It’s draining. It’s isolating. It takes so much more time and energy and stamina to stay on top of your kids’ needs and challenges. Sometimes you can want to curl up in a corner and not come out for a few days.

But we can’t.

Let me make one other thing clear: Katie and I know that it’s not the kids’ fault. We don’t resent them for who they are or for their needs. Much, in fact, of what can weigh on us is watching our kids go all this turmoil. We wonder what their future will look like. We worry if they will be able to live on their own after we’re gone. We ache for them to be rid of their painful challenges. And we feel helpless.

So when you see a special-needs parent looking unusually rested and refreshed, know that a lot is going on underneath the surface. Know that sooner or later they’re going to go through a Thomas Covenant-like transformation. So go easy on them. Maybe even offer to help them when the need arises.