Oscar sits perched on a concrete wall in the shady courtyard of the windowed hospital building. He checks his watch and then leans over into the landscaped border, his lanky limbs splaying at odd angles, and scratches designs onto a gray rock with a stray piece of red bark. I’m hunched over my phone trying to access some conference notes on scoliosis research in people with Prader-Willi syndrome. Our appointment with Oscar’s spine specialist is in eleven minutes but my “smart” phone is having trouble accessing the internet.
I’ve charged Oscar with keeping track of time for me. His watch is his security blanket, helping him bring order to the chaotic world of shifting schedules and revised plans. He’s obsessed with time so I call on him to use the watch in appropriate ways whenever I can. Now, when we need to make sure we get to the appointment on time is a good use of his excessive checking. (Later, when he’s supposed to be napping, not so much.)
“Mom, eh, eh, we have ten minutes eh eh”, he says, flicking his wrist up to within inches of his nose to consult his watch for the fifth time in the three minutes we’ve been out here.
“Ok, Oscar, thanks.” I reply distractedly. The signal is in and out and I’m starting to wave my phone above my head in desperation. I know it won’t help, but it makes me feel better.
“What are you doing, eh, eh?” I can tell he’s worried we’ll be late. His extra “ehs” are some verbal tic that increases with anxiety. The tic and the stuttering cycles that wreak havoc on his ability to get his words out are the two main reasons we’re considering returning to private speech therapy.
“Oh, sweetie, I’m just looking for this research I saw about scoliosis and Prader-Willi syndrome to show Dr. Gray.”
“Oh”, he replies, his brow furrowing with confusion.
“I have Prader-Willi syndrome, right eh eh?” he says half to me, half to himself.
His brain does not allow that he might have both. And yet he knows we are here in this hospital every four to six months to check on the twenty-some odd degree S-curve we detected when he was two. He remembers squeezing into a hard plastic back brace for an entire year, until he outgrew it last April and the orthopedist we were seeing for his unrelated bone disorder said he didn’t need it anyway. (That doctor didn’t believe in bracing until thirty degrees or worse. Another one, at a third hospital, thought surgery was the way to go.)
Oscar stops work on his design and looks up past the shimmering windows toward the narrow slice of blue sky to ponder the possibility of having both -- scoliosis and Prader-Willi. I can feel his anxiety level creeping higher, but I feign distraction with my phone. Sometimes talking only fuels his anxiety so I’m hoping he’ll drop this topic until after the appointment when we’re buckled into the car for the hour-long ride home. We can talk then. If he gets too anxious now I won’t be able to sneak in that twelve-tube blood draw that we need for his endocrinology appointment next week.
My feigned distraction is no deterrence however. He perseveres.
“So, mom, is Prader-Willi syndrome a disabled eh eh?” he asks, sitting up straight now. His voice stumbles awkwardly over the word “disabled”. He’s not sure it’s the right word and I can see in his eyes that he’s afraid of the answer.
“Yeah, Prader-Willi syndrome is a disability”, I respond, looking up to smile reassuringly into his deep brown eyes. I know something about fearing disability. Fear of disability haunted me before I had children. And then, when Oscar was born, I feared him – the floppy baby who couldn’t move his head or latch onto my breast. I don’t fear Oscar now and I’m sad that he might be starting to grieve his diagnosis.
I’m not prepared for Oscar’s next question. “But what do I have that’s disabled?”
I’m not sure how to answer. My mind races with all the ways in which Oscar already knows he needs extra help. He has a 1:1 aide in school to assist with transitions and sensory breaks and staying on task. His schoolwork is modified for length and difficulty. His food intake is strictly monitored. He works with a learning specialist, two OTs and a speech therapist every week. He still naps for two hours every afternoon. And just a few minutes ago, as we walked into this sun-dappled courtyard, he was talking excitedly about how much he loves math and how his teacher is so good at giving him the right level math for him. “It’s not the same level as the other kids but it’s the right level for me, mom, and it’s so fun eh eh.”
I realize now that while I use the word disability to describe our circumstances to other people, I’ve apparently never told Oscar that Prader-Willi syndrome is a disability. I’ve never referred to Oscar as disabled, not to him or to others. We’ve always just focused on what he can do. Disability implies “cannot” to Oscar. No wonder he’s confused – we’ve only ever talked about “can”.
I’ve given up on finding that scoliosis research and am struggling to form an answer to Oscar’s question. What does he have that’s disabled? What do I tell him now, at age nine? He’s probing for the first time and I don’t want to gloss over his question.
So I decide to start with, “Remember how I told you that when you were a baby your muscles were really weak?”
“Oh yeah, I remember that,” he replies, smiling with relief, assuming there’s nothing more to add.
He scoots his bottom off the wall and claps the red dust from his hands. He checks his watch. It’s time to go.
Mary lives in Northern California with her husband and three kids. She blogs at Finding Joy in Simple Things.
I love the thoughtful, honest, loving, sensitive way you parent your children. When you describe the three different doctors' three different opinions about how to deal with scoliosis, I caught my breath. So much information, so much to decide, so much to juggle. Yet you were able to be IN the moment, when Oscar needed you, and you gave him an answer that satisfied his need to know, in that moment. Bravo! You write beautifully, and you and your family inspire me. Thank you.ReplyDelete
Oh Mary, I love this post. I can really see and hear you and Oscar. I can so relate...we are getting Nick's new back brace on Friday.ReplyDelete
This is so beautifully written, Mary -- so wisely said. I am going to pass it on to my colleagues -- we've been talking at length about Prader-Willi, and I want them to hear you and listen to your story and Oscar's. Thank you --ReplyDelete
Thanks for the comments!ReplyDelete
Karen -- you are right -- it is so hard to navigate the differing opinions. I threw my hands up at this one...and maybe someday we will go for the 4th opinion. On the positive side we stick with doctors who see us as partners in Oscar's care and appreciate the information that we provide from conferences. (This spine specialist was most interested to hear about the research I couldn't track down on my phone, always a great sign).
Lisa -- it's so awesome when our kids can lead the way. I love how Nicholas has embraced his brace. Oscar did too and will again should we need to get a new one. (We now have appointments every THREE months to monitor)
And Elizabeth -- thanks so much for passing our story along to your colleagues. I'm happy to help with all the info I have, and do plan to write more about how we manage PWS.
Great writing! I was holding my breath right there with you.ReplyDelete