Monster Island
The island where we stayed for Schuyler’s spring band trip over the weekend provided just about everything you could want from a vacation spot. The resort was very nice, the pool was epic (I’m going to go on record as saying that a bar with swim-up barstools in the pool itself is an idea I can support, for probably all the wrong reasons), the beach was lovely and the weather was absolutely perfect. The band kids were a lot of fun and much more well-behaved than I ever was at their age, and the directors were patient and accommodating.
The island was a great place for a spring vacation.
But Schuyler’s monster followed us. He kept busy during our stay. The devil ain’t no lazy bones, as the song reminds us. He works twenty-four hours a day.
I’m not going to go into details, but I can share some general points. There are certain circumstances that create conditions favorable for Schuyler to have a seizure, including hormones and stress, and they all came together like a perfect storm. Her first seizure hit on the afternoon of our first full day at the resort, and it left wreckage in its wake. We’d tried to give Schuyler as much room to behave independently and make her own choices, and this turned out to be, if not a huge mistake, at least a woeful miscalculation. I feel genuinely bad for that, like I failed her.
(I’m at least hopeful that the “listen to your parents when they warn you to wear sunscreen” lesson might take hold for next time; she’s still walking like a cowboy at the end of a long cattle drive. A very, very red cowboy.)
By the end of the day, we’d moved Schuyler out of the room she was sharing with four other girls, none of whom probably should have been asked to take on the special responsibilities for watching out for her. She joined us in our room, which had an extra bedroom. It occurred to me later that this wasn’t a happy coincidence.
The entire trip wasn’t a wash by any stretch, and honestly, if you asked Schuyler if she had a good time, I imagine she would give a qualified “yes” in response. It was a roller coaster ride for sure, and I like to think it was mostly highs. But the lows were subterranean, and by the time we returned to Plano two days (and at least one seizure) later, we were all spent, physically and emotionally. These seizures were notable for the depth and longevity of their post-ictal periods. Julie kept Schuyler home from school the following day. We’ll see how she does when she returns to class today.
I’m not sure where I’m going with this post, because I’m not sure what the takeaway is. Schuyler had a good time, except when she very much didn’t. Her social anxiety only hit after her seizure, but boy did it land hard after that. She laughed hard most of the time, including once so enthusiastically that we literally heard her from the other side of the resort. But she also cried harder than I can really remember her crying for many years. She was probably happy 80% of the trip, but that other 20% had real teeth and claws. Schuyler adored the beach and looked hard for sea creatures on the sand. But in the end, it was a very familiar monster that found her.
So we’re home now, and the challenging parts fade in the memory, as they do in most happy families where a big sad lurks from time to time. We have a lot to consider for the future, mostly about exactly how much true independence Schuyler can handle. This was a challenging enough experience that if we hadn’t accompanied her on the trip, I suspect at least one of us would have ended up hopping a flight to Corpus Christi that first day. Next year’s trip is to Disney World, and honestly, if you asked Schuyler today if she wants to go, I can’t imagine what she’d say.
For myself, I’ve come to a conclusion, one that I actually arrived at several days ago. For the near future, I’m going to stop trying to steer Schuyler toward that independent light she’s been so keen to grasp. I’m going to turn off, as best as I can, that ticking clock that whispers dire warnings about everything waiting down the road. I’m going to give up trying to guide a young adult towards the Capital-F Future for a little while. I’m just going to let my kid be a kid.
God, she tries so hard.
When we were leaving Corpus Christi for the long drive home, the buses stopped at one of those big, ridiculous souvenir shops for one last chance to blow some money. Schuyler picked out a t-shirt and some decent shells, and then we both gravitated to the shark tooth jewelry. Without even discussing whether or not it was a thing we should do, we both picked out necklaces with a decent sized tooth and bought them.
As the bus ate up the miles between the coast and Dallas, we talked about sharks. Schuyler decided that sharks, with their mystery and their ancient lineage and their terrible teeth, definitely qualified as sea monsters, and so our new monster tooth necklaces gave us the power to detect when monsters are near. Oh, if only that were true.
I haven’t taken mine off since then, except to shower. I even wear it to work under my business casual work clothes. I like how it reminds me of things I shouldn’t forget, like my wonderful daughter, and a stalking monster. When I press it against my chest, it bites ever so slightly.
Just enough to warn. Monsters are near.
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Rob,
I’ve been folllowing your writing for awhile and appreciate that you are sharing your journey as Schuyler’s parent with sensitivity to her privacy. Growing up with a physical disability, I did not always appreciate people sharing the specifics of my struggles.
This article reminded me of a situation in my family with a cousin who has mental illness as well as some cognitive challenges. His parents were in complete denial during his childhood so he had no interventions and it wasn’t until he hit adulthood and floundered miserably that they realized he truly needed help and by that point they couldn’t actually get him any help. As far as I know he is in a stable living situation at the moment but he still can’t drive, spent several years homeless, and has had multiple children removed from his care and adopted by family members.
His parents expected thst he would somehow just magically gain the skills he needed for independent life. If he had received some help earlier on I feel like he could have lived independently with a little support from time to time. By ignoring his issues and assuming he would be 100% independent his parents actually deprived him of the chance to get the help that would have allowed him to reach his full independence.
I can tell this is a difficult time for you (and I am guessing Schuyler as well) but I hope you keep in mind that by facing the reality of where Schuyler is at now you can help her set up a realistic life for herself that is good and fullfilling and leaves her room to safely challenge herself rather that throwing her off the deep end and letting her sink.
“Throwing her off the deep end and letting her sink” doesn’t sound much like what I’ve read of the RumHuds’ collective preparation for The Future, to put it mildly. (Or maybe that’s not what you meant.) Your cousin’s situation sounds tragic–no parent or child wants to end up in a situation where help was possible and not offered until too late, and that’s the fear that informs so many of the interventions and precautions taken by parents who know that danger is there…and probably the denial of many others who don’t want to believe in it.
I think the point here is that the center of gravity between encouraging independence and protecting kids from the fallout of said independence is a struggle for ALL families, with special urgency and poignancy when someone in that family has special needs. There are so many unknowns, and those often don’t come with easy answers or researchable precedents because no two kids are alike. So how do you plan for a balanced life when you don’t know what “balanced” looks like for this person–except by trial, error, thinking and heart-listening, and careful correction? Sounds like that’s very much what’s going on here…so not every correction in the direction of “less independence, more protection” is automatically the wrong thing. It’s all still a work in progress.
DC, my point was to illustrate that sometimes the actions we take to give people independence actually make them less independent. Our gut reactions can be to think that the least amount of support possible equals more independence but sometimes providing supports enables the person to be as successfully independent as is possible and gives them room to develop skills at their own pace.
*Not to say that Rob is doing that but his posts are discussing his and Schulyer’s struggles to figure our what her adult life can and should look like. I don’t think there is any perfect answer but complete independence is often touted as the end all be all to the detriment of people who are stuck in that gray zone of needing some help but still being quite capable.
Oh, I get it–your cousin’s parents thought they were doing him a favor by letting him figure everything out for himself, when really that just set him up for bewilderment and long-term incapacity because he hadn’t been given the resources he needed beforehand. I agree–that kind of “deep end” mentality is dangerous. But I don’t think Rob is in danger of falling into that way of thinking; if anything, sounds like it’s Schuyler who wants to take the plunge. Which is understandable and kind of awesome, if also terrifying to protective parents. Sounds like they’re all constantly working on finding the right approach…including, fittingly enough, at an island resort with an epic pool.