By David Royko
If one miracle occurred during these holidays--in our house, its Merry Christmas and a Happy Hannukah to all--it came when I handed Ben a pill, watched him put it into his mouth, then take a gulp of water from a glass, and swallow. He’s been doing this for a little while now, but it is still new enough that it gives me chills. After 6 months at the ODTC, nothing personifies Ben’s growth more than that: He can take a pill with water.
Since he started school, and since his education is geared toward teaching life skills, I’ve implored at the IEPs that Ben learn how to do this seemingly simple task. To me, this was an essential life skill, considering the various medications that Ben had to take. As it stood when he started at the ODTC, he got Depakote, twice a day, along with Previcid, capsule after capsule emptied into a bowl with plain yogurt, which was then spoon-fed, with some cajoling. There was Prozac, in liquid form, delivered in a series of diluted apple juice bottles. Abilify, crushed, was added to several of the Prozac bottles, and we spent every evening monitoring if Ben had finished all of his watery medication. If he got ill, and stopped eating and drinking, the meds stopped, and the nasty behaviors started, exacerbated by the illness. If he needed Tylanol, it had to be delivered by suppository--I’ll bet you didn’t know it came that way.
Ben is what might be termed orally defensive. He is extremely picky about what he puts in his mouth, and he has clammed up tightly whenever a pill was attempted. He loves to eat dirt, sand, mud, and other inedibles, but a pill--forget it.
That was then, and as I sat with him at the kitchen table, watching him ingest his Abilify--chewing it--yech!--followed by water--from a glass instead of a bottle, another new triumph--I actually became teary. It was one of the many gains he’s made in just a few months, but the one that, for me, represents so much more than it would for most people. Ben took a pill. It was the best Christmas present I could have gotten.
We’ve now had our first “normal” family vacation. A couple of days before New Years, Karen, Jake and I headed from Chicago down to Tucson, home of the Arizona Wildcats, the Saguaro cactus, and, for half the year, my in-laws. They bought a place down there soon after I married into the clan, over 20 years ago, and though I could never understand the lure of the dessert before I’d been there--a vacation without an ocean seemed ludicrous--I fell in love with it. Tucson became my favorite place to go, and Karen and I went every winter for a week or so. The idea of staying with in-laws for a vacation sounds like the ingredients for an oxymoron, but I actually like my in-laws, and having a house instead of a hotel to stay in on a vacation made it all the better.
It also made it a no-brainer vacation destination when we had the babies in 1993. With twins, having a house plus a set of mother-in-law hands made a trip possible in the first place. But possible does not automatically mean fun, and taking care of twin babies means that a vacation is only a change of scenery, not a time of rest. And any slight benefit of being in a warmer place than Chicago was cancelled out by flying with the boys.
Our last Tucson trip with Ben, in early 2001, when the boys were seven, was a nightmare topped off by a tantrum at the Tucson airport. Ben became terrified of walking through the gangway from the terminal to the plane, the flight crew finally telling us that they had to close the door and maybe Ben shouldn’t fly. And yes, we had already given him sedation. With the prospect of missing the flight and having no idea what we would do to get him home, we gave one last push and got him down the ramp and on the plane. Drenched with sweat, we “settled” in for the 4 hours of being in a plane with Ben, which always included trips to the miniscule bathroom for changes, which were now nearly impossible with ever-bigger Ben. Considering that the flight down, and the entire trip, had been an ordeal, we agreed--this was the last time. The massive changes in security and procedures at airports and on airplanes that began later in 2001, post 9-11, only served to seal our decision and insure that Karen, my eternal optimist, would not reconsider.
So this was the first time since then that Karen and I were in Tucson together, along with Jake, and it was glorious. After 14 years, we truly were on vacation. We slept late, whereas before, whoever had taken the night, with Ben’s ups and downs, would wake the other 5:00 AM for their shift. We went places, ate out, had fun, and relaxed. It felt like it had right after Ben moved out--like a different life.
However, a funny thing happened, over and over. We’d be driving, and one of us would say, pointing out the McDonalds with the big T-Rex outside and the ball pit inside, “Oh my God, remember when Ben…” and our minds would flash back to a scene with Ben stranded in the ball pit, refusing to come out, with a fresh load of crap in his pants. Or passing Traildust Town, with its little merry go round and train ride, we’d recall some ugly tantrums, or at the local pool, I’d say to Karen, “Remember that bush,” where Karen had desperately flung a full diaper that Ben had filled while in the water, and then tried to escape from Karen with a naked--and extremely non-hygienic--bottom.
These unexpected trips down memory lane happened every day, over and over, just as the events had happened, years before, every day, over and over. As the images flooded our minds, I realized that we in fact were having something like mild PTSD--Post Traumatic Stress Disorder. Most famous as the condition suffered by many returning combat soldiers, this was certainly not the full-blown condition, but these frequent sort-of-flashbacks, and the surprisingly strong emotions they evoked, had caught us off guard. It served to heighten our appreciation of where we were now, even as we expressed sadness that Ben had to be “gone” for us to be able to enjoy a vacation.
Our flight home was delayed by mechanical problems. As we sat on the plane, waiting for an hour and a half to take off, we didn’t even feel annoyed. In fact, it was almost pleasurable. Life had tossed us one of its minor inconveniences, and if Ben had been stuck in that cabin, it would likely have turned to disaster. As it was, we read our magazines, contented, relaxed, and happy in our knowledge of how lucky we were to be stuck on a plane as it sat on the runway. Period.
When he was four, Ben spent a night masquerading as a conehead. A dull peak of gauze, built up and wrapped, turban-style, atop his head, housed the wires and hook-ups for an all-night reading of his brain waves. The result was an “abnormal EEG.” We’ve never been quite certain exactly what that implied, but it lead to his taking Depakote, an anti-seizure medication that is also used as an alternative to Lithium for mood disorders. It did have a mild effect on his mood--positively--but even better, it seemed to give a bit of a boost to his language.
As he grew, the dosage increased. On the occasions when he went without Depakote, usually because he was sick and refusing to heat the twice-daily servings of yogurt that carried the many capsules worth of crystals, his behavior spiraled out of control, with endless hours of aggressive raging and heart-rending wailing. When Ben was eleven, his doctor, concerned about the eventual toll long-term Depakote might have on his liver, suggested we wean him off and switch him to Lithium. There’s little in the research literature about the impact of Depakote on the language of autistics, and virtually none on Lithium as an alternative. But Ben’s doctor was thinking ahead, and anticipating the eventuality when Ben’s body would no longer be able to process the Depakote, and wanted him off of it.
By then, such a prospect seemed all but impossible. Even at his best, Ben was still prone to outbursts that, as he grew, became more difficult and dangerous. We knew what he could be like off of Depakote. So, we never got around to it. We had his blood checked regularly, his liver was doing fine, and so we kept giving him the Depakote.
Soon after Ben arrived at the ODTC, that changed. His liver started to complain, his blood results said. It was time for the Depakote to go. And he was now precisely where that could happen.
We were anticipating horror stories and big misery for Ben and the ODTC. It didn’t happen. Yes, his aggression did increase, but manageably. The tight structure and professionalism of the staff at the ODTC managed what we never could at home.
But even with the addition of Risperdal, which has helped somewhat with his behavior, Ben’s language has diminished by at least half, if not more. We don’t know how much of the increased aggression comes from frustration at not being able to communicate verbally--not that he was ever conversational, but a few words or phrases go a long way. Lithium might still be in his future, but how it will work with Ben--who knows?
So, when people ask how Ben’s doing at the ODTC, it’s a complicated question. He has adjusted well, and we couldn’t be happier with the place. At the same time, it his heartbreaking to see him unable to express himself as he used to--he seems more “autistic,” locked in his own world, less connected with the rest of us, and less settled behaviorally (relatively speaking, of course).
At the same time, Ben is exactly where he needs to be to go through this. We are profoundly thankful that the timing worked as it did. If we’d had to get him off of Depakote at home--well, better not to contemplate such things. Hopefully, something--be it continued behavioral therapies or a medication--will bring him back to where he was on Depakote. He’ll never be able to go back to Depakote, so all we can do is hope. With autism, hope--too often--is the only remedy we have.
After 6 months of weekly visits with Ben, some up in Oconomowoc, and a few here at home, including a few overnights, Ben went for two weekends without seeing us, because we went on vacation. We prepared him with a calendar that showed him exactly when he’d have another visit with us, so he would know that he would see us again, that we weren’t abandoning him.
The visit went beautifully, which felt even better because of the previous one. Before our trip, on Christmas Eve, less than a day into his holiday visit with us, Ben was hit by the stomach flu that had been blazing through his unit at the ODTC, and he became volcanic from both ends. It was a darkly familiar experience to be doing dozens of loads of laundry and giving bath after bath, but it made all the difference knowing that we would rest in a couple of days, verses having it be just another more difficult storm in the midst of the ongoing hurricane of autistic life. It also brought out the different perspectives of Karen and I. Karen was glad Ben got sick with us, because she would have hated him feeling so sick away from home. As for me, I thought--but didn’t say--the exact opposite: “He’s going to be sick away from home eventually, so why couldn’t the ODTC be dealing with this, instead of us?” A mother’s love truly is a wondrous thing. It’s also easier for me to appreciate these days.
Now Ben was back, for a 2-nighter. No worse for the gap in visits, Ben had a great time. His favorite thing to do is sit with us in the den and watch his favorite videos, so we saw plenty of Barney, Sesame Street and Thomas the Tank Engine. When it was time to head back up to the ODTC, we were worried that he might be upset, but instead, he practically leapt off of the couch to get ready. He smiled all the way back, and only when we were saying goodbye, as he sat on his bed hugging a stuffed ducky, did he seem sad. Otherwise, all was well with Ben.
It cemented our decision to start alternating the visits, allowing us to have our first “normal” weekends, and giving Ben a predictable schedule for coming home. This coming weekend will be a Ben weekend, and we are looking forward to it. Visits with Ben, even with some difficulties almost guaranteed, are so easy to enjoy now, and we anticipate them with genuine excitement. Last weekend, on the other hand, we didn’t do sh…, er, we didn’t do much of anything, except enjoy every lazy minute.