I will try.
I’m not entirely sure how I feel about New Year’s resolutions. I’m pretty sure this time next year, I’ll be the same guy, needing to lose weight and eat better and make more money and drop fewer f-bombs around my teenage daughter. In general, the whole resolutions thing feels forced, and more to the point, it feels set up to fail. I can do that just fine all year.
When it comes to raising a girl with a disability, however, the beginning of the year always presents that moment of truth. It’s that time to stop and ask myself if I can do better. And with apologies to Yoda, while I understand the whole “do or do not” philosophy, all I can truly promise is that I will try.
I will try to have more patience. More patience with Schuyler, certainly; she just turned fourteen, so I suppose a lot of that patience won’t even be disability-related. But I will try to have more patience with the teachers who are trying to reach her, and much, much more patience with those who aren’t. I’ll try to have more patience with family who sometimes don’t understand Schuyler, and with friends who perhaps don’t understand who I’ve become and who I have to be because of my daughter and the life she’s been handed.
I will try to encourage Schuyler’s use of AAC in the coming year. She still fights it, and now she does so not with the petulance of a child but with the stubbornness and empowerment of a young woman. I will try to step up my own game accordingly.
I will try to help make her transition to high school as painless as possible. I will try not to scare off the boys or girls who start to show interest in her. I will not buy a shovel.
I will try to let go a little more, to show Schuyler the paths available to her and then to let her walk down those paths with greater autonomy. This one might take some work.
I will try to foster more and deeper relationships with persons with disabilities. Not in a tokenistic way (“I have a black friend now!”), but with an eye towards a better understanding of what that world really looks like. I want to build a more authentic grasp of what it truly means to be human, and how I can accommodate that expanded idea of humanity.
I will try to help Schuyler navigate her new life with anti-seizure meds. It’s been a rough few weeks. Last week, she finally reached her full dose. The effects haven’t been deal breakers, but she’s making adjustments. She’s moodier, more excitable, more sensitive. Her hands are clumsier than before, causing her to drop things. (Almost a whole package of M&Ms ended up on the theater floor at a movie last night.) Her meds affect her appetite, her complexion and her sleep patterns, too. If she weren’t already a hormonal teenager, these meds would be turning her into one.
The thing is, Schuyler knows it, too. She feels the changes taking place, and when she is losing control, she can sense that the driving force behind it lies beyond her control. Schuyler needs a lot of understanding and maybe a little less corrective parenting, and so I suppose I need to simply try to be nicer to her while she works to adjust.
I’m not sure I’d call any of these “resolutions”. But as we march off into 2014, I will try to be the father that Schuyler needs, more now than ever. I wasn’t ready to take on the life’s work of being a special needs father; I’m not sure anyone ever really is. But it is in the trying that I become a better father, and a more whole person.
In that respect, I begin the new year the same way I ended the old one. As the luckiest person I know.
Note: To support the site we make money on some products, product categories and services that we talk about on this website through affiliate relationships with the merchants in question. We get a small commission on sales of those products.That in no way affects our opinions of those products and services.
Share this:
About The Author
Rob
Robert Rummel-Hudson is the author of "Schuyler’s Monster: A Father’s Journey with His Wordless Daughter", which tells the story of raising a little girl with a disability and learning to become the father she needs. It was published in February 2008 by St. Martin’s Press.
I don’t have epilepsy, but I take an anticonvulsant (lamotrigine) for another condition, so I can’t be sure if what I’m saying applies, but:
I’ve learned that the first few months of a new medication are the hardest. After that, your body tends to learn that yes, this chemical is getting dumped into it, and decides to adjust. There will still be side effects (there will always still be side effects) but they will be better. Some will go away and some will get less bad. I’ve been on lamotrigine for three years and that clumsiness you mention was really bad for the first few months, but after about six months it died down to the point that I could work around it. I decided that after three months on the full dose if it wasn’t better I would ask to try something else, and keeping that three months in mind as a solid endpoint one way or the other made it a lot more bearable.
As far as mood swings go: it’s helped me if I’ve had someone gently point out to me when my moods have shot a little far in either direction. It’s probably obvious to an outside observer that, say, I’m really angry about something, but sometimes it happens to me faster than I realize. Once it registers that I’m angry I can do things about how I manifest that. It’s not helpful to do it in a judgmental way (“you shouldn’t be so angry about that!”) but something like “you’re really angry right now, what do you want to do about it” can help a lot. I’m sorry if you’ve tried that with Schuyler and it hasn’t worked or you haven’t tried it but you know it’s not for you or whatever. That’s cool. Just wanted to share something that’s helped me in case you hadn’t run into it before.
I will echo what the previous commenter said. I’m on Topamax, and there definitely was an adjustment period when I started the medication. Shakiness, tip-of-the-tongue aphasia, inability to taste carbonation, other weird side effects that I’ve now forgotten. They all got better after a couple months. Hopefully they will for Schuyler too.