School starts in just over a week and I’m starting to get anxious about all the things we haven’t done to prepare. All the unmet summer goals are taunting me as I try to fall asleep each night. Oscar has barely started on the math workbook and collection of reading comprehension passages that the learning specialist assigned at the end of last year.  I did extensively research and purchase a netbook for him so that he can use adaptive software for writing assignments in fourth grade, but I haven’t spent any time teaching him to type.  I brought the computer (and loads of good intentions) on vacation with us, but it’s collecting dust on the bureau.  I also still need to set up an online sharing site so Oscar’s team of teachers and therapists can more easily communicate with each other. Oh, and of course, there’s the small problem of not yet having a signed IEP, which will require phone calls, letters and meetings as soon as we get back from vacation.

A few months ago I spoke with a television producer who was planning a show on Prader-Willi syndrome, the rare genetic disorder that Oscar was born with nearly ten years ago.  She had just started her research and somehow found me in the blogosphere. We spoke for a while and she asked lots of insightful questions, but this one really stumped me.

What is the hardest thing about having a child with PWS?

When Oscar was born and I read all the scary literature that painted people with PWS as garbage-eating monsters, I was darn sure that keeping Oscar from stealing food out of the neighbors’ freezers and a dozen other equally unthinkable places would be the hardest part of PWS.  But as I learned more about the syndrome and gained confidence in how we would maintain a food secure environment, I started to be more concerned about behavior issues – the tantrums, inflexibility, anxiety, and perseveration – that I read about in online sharing groups for parents of older children.  Many families say that behavior is the most challenging aspect of PWS, harder even than securing the fridge with a bicycle lock and begging classroom teachers not to serve shamrock-shaped cookies on St. Patrick’s Day.

While food and behavior are definitely challenging parts of our family’s every day, if not every minute, they are not the hardest parts of PWS, not now, not for me. 

I’m not naïve. I recognize that our food and behavior issues could escalate at any minute to a point where I might change my tune.  But today, even when I caught Oscar, not two feet from me, covetously fingering the dry goods in his grandma’s pantry, I thought “Hmm, the food stuff might be ratcheting up a little”, but I didn’t dwell on how hard it is to constantly monitor him and his environment.  It’s just what we do.

I know this does not make for interesting television, but as we close in on ten full years of dealing with PWS the hardest thing is the incessant coordinating and communicating.  Compared to my two typical children, raising Oscar just requires so much more – more paperwork, more emails, more phone calls, more advocacy, more doctors, more therapists, more school meetings, and way more educating. As my poor friends have heard me repeat all summer long, there’s just a whole extra layer of stuff to deal with when you have a child with special needs.

Thankfully Oscar is oblivious to my anxiety over my (and, frankly, his) lack of preparation for the start of school.  He’s had a wonderful summer and I don’t regret any of the choices I’ve made.  His days were filled with swimming lessons, horseback riding, and zoo camp. He cemented his biking skills and worked on playground games so that perhaps he’ll have the confidence to join in during recess next year.  He loved his twice-weekly math sessions with the educational therapist and even happily did the homework.  He also had lots of precious unstructured time -- creating zoos with blocks to house his prized plastic animals, playing silly games with his siblings, and cheering on his brother’s baseball team.  The things we have done have all been worthwhile so why I am so bothered by what we haven’t done?

I think I’m struggling because I work so hard to set reasonable goals in the first place. I’m not trying to win parenting awards or turn Oscar into a Prader-Willi poster child (though Oscar is awfully handsome and would be happy to pose for a poster).  I prioritize family time and have told teachers that homework doesn’t always fit too well into Oscar’s schedule because he sleeps so much and we want to spend time with him too.  I postpone non-essential doctor appointments till more convenient times and I tell therapists that we just can’t follow all of their home program suggestions. I learned to say “no” when Oscar was little because if we did everything that might help Oscar it would be too much.  But some things must be done and so I prioritize them.  We do need to finalize the IEP, and Oscar really does need to learn to type.  I have to (and want to) set up that online sharing group.  And there are a dozen more carefully selected tasks that I really thought I could accomplish this summer, and didn’t.  It’s always been that way.  And, so, for ten years, despite all that I am doing, I still have a never-ending to-do list circling in my head. 

That is the hardest part of Prader-Willi syndrome, for me, right now.

Mary is adding blogging more frequently at Finding Joy in Simple Things to her list of priorities and hopes to see you there as well.