Friday, July 31, 2009


Oscar is an early riser, by my standards anyway. It's all part of the disability package. For years we've been trying to teach him to stay in bed till 7am. But still we find evidence of stealthy early awakenings -- books or toys scattered on the floor of the cramped closet or a light on in an odd place. Sometimes we hear him, or worse, Abe yelling at him to be quiet, as early as 5am.

Now that he is starting to learn how to tell time, things are getting a little better. But it's summer, and 7am is too early for me when I am not nodding off till past 1am. Last week, Oscar begged me to put a clock in his room so he didn't have to get out of bed to look at the clock in the kitchen. I obliged, but I tried to trick him by setting it back a 1/2 hour, thinking I could catch some extra sleep.

I should have known better. Tonight as I putting Oscar to bed he told me that he didn't like that clock I'd placed on his bedside shelf. When I asked why he said that that clock was "slow". Although he was right, I was surprised he used such accurate words to describe the clock -- his accuracy didn't fit with his tenuous understanding of the concept of time. Curious, I asked what he meant by "slow".

"Well, when this one says 6:20 the kitchen one says ten minutes to 7." He's right. And I'm impressed.

And then he says, "Yeah, it's slow, Mom. It just takes too long get to 7:00 so I only use it when I want to sleep in. I use the kitchen clock when I'm ready to wake up."

So much for trying to throw this kid off. Still, it's clear he doesn't really "get" time, and my shenanigans certainly haven't helped. Just goes to show how desperate I am for sleep! Maybe I should go to bed earlier...

Sunday, July 26, 2009

Baseball Fever

It would be perfectly understandable, after five baseball tournaments and never progressing past the semi-finals, if Abe started to get discouraged. He's been playing baseball nonstop since February, first with his regular league team, and then this summer with All Stars, and now with his tournament team, the Thunder. We're at tournaments most weekends, and some weekdays too. And when they don't have games, they're practicing, up to three times a week. More for Abe if you count the two weeks of baseball camp and a couple of extra private sessions. They've won games, many games, but they've never won it all. Despite all the hard work, the excellent coaching, and the deep pool of talent, they seem to always lose in the semis.

Today, though, I witnessed something really hopeful, something way more important than getting to the finals. Something I'd been waiting to see. The Thunder came back from being down 1-3 to tie the game and then win 4-3 with a walk-off single in the bottom of the sixth. I was so proud of them all, and their perseverance. It would be so easy at age 10 or 11 to get discouraged when you're down by a few runs. But today they stuck with it, battled hard, and won the game that deservedly landed them in the semis. I jumped up and down on the metal bleachers, screaming "I'm so proud of you THUNDER! Way to stick with it". I'm pretty sure Abe was too busy celebrating with his team to notice his kooky mom. At least I hope.

Abe didn't hit well this weekend. I didn't keep close track, but he did of course. "Four pop-ups today, Mom" he said as we got in the car. "All I needed was a ground-out (his specialty) to bring in a run, but I couldn't even do that." I reminded him that last week he was striking out a lot and that he didn't strike out once this weekend. He battled up there, forcing the pitchers to throw him a lot of pitches. Sometimes runners even advanced. And he really excelled at catcher in his first full-running tournament. But he's not satisfied.

Let me be clear --while he's not happy about his hitting, he's neither tired nor discouraged. If anything he's even more motivated. His first words, upon leaving the dugout after the 9-1 loss in the semis, were "Can we please go to the batting cages? I really want to work on my hitting." He was enthusiastic, almost cheerful, despite the loss not 10 minutes earlier.

And tonight, after returning from a marathon wii baseball tournament with friends, he walked in the front door and immediately asked Paul to throw him some wiffles in the backyard.

He's in a great mood, full from all the baseball (the wins and the losses) and fun times with great teammates. No, he's not discouraged...he just wants to get back out there and play.

Even as I type, he's standing in the living room throwing phantom pitches, and demonstrating the full concept of a "balk" to Paul. And I just heard them make a plan to hit the batting cages at 7:30am tomorrow. Abe's not an early riser, so this is serious.

I was talking with another parent this week about how baseball is really a metaphor for life. Whether they win or they lose, these kids are learning so much about working hard at something they love, about learning from and then letting go of mistakes, about supporting a teammate in a slump or in a streak, and about respect for their coaches, the umps and their opponents. I never played on a team as a kid, but I think if I had I wouldn't have been so afraid to mess up every once in a while. I might have learned to persevere even if I wasn't particularly good, just because I loved it. Abe is good, but what matters even more to me is that he loves this game and he keeps asking for more opportunities to play.

I'm afraid to break it to him that he starts basketball camp tomorrow.

Friday, July 17, 2009

Ice Cream

I caved this year and signed Oscar and Ruby up for the all consuming summer-sucking swim team. Well, sort of. Their level is called minis, and it's for kids age 6 and under who can't yet swim across the pool. So it's not really swim team, but swim lessons. Oscar and Ruby need to swim -- it's so good for their muscle strength and not at all taxing on their compromised bones.

It's fine. It would be a lot better if it didn't cost a million dollars. But since I already paid the million, we go. Every day we arrive just in time for the 12:30 call for MINI STINGERS! and trudge over to the spot on the far side of the pool where kids are assigned to their coach of the day. After I pry Ruby off my leg and help Oscar remove his white socks (pulled knee high of course) and blue crocs, it's just under a 1/2 hour of turn-taking with 3 other kids and a kickboard, endlessly practicing side breathing. My kids are nowhere close to side breathing, but they just keep at it, day after day.

At the end of the 1/2 hour all the minis come together for a quick song and a cheer. Last Friday, though, was promotion day. Each kid's name and swim level (1-10) was announced and, as they exited the pool, each was handed a lollipop as a reward. A frackin' lollipop!!! This week's reward for swimming a lap --licorice! I actually thought swim team would be a food-safe sport. But, apparently they use candy as motivators at the pool, handing it to the kids as they climb out. It's bad enough that every day, as we leave the pool, we have to push through a long line of shivering wet kids grasping soggy dollar bills and talking about which crappy "ice cream" they're going to get at the snack shack.

Oscar always notices the artificially colored frozen sugar on a stick and is distracted. He stops walking and stares, at the kid, at the confection, back to the kid. He'll sometimes say "We're not having that, right Mom?". "Nope", I answer. "That's not healthy for our bodies". I know that at least half the time I say it comes out as if we are somehow better. We make better choices, we take better care of our bodies, or, we're too good for that. Oscar buys the propaganda. He can get behind any slogan or cause. But we're not better. We just can't.

Ruby always whines.

"Mammmmmaaaa, why can't we have some?" she asked today referring to the melting rainbow popsicle in the hands of a chubby-legged three year old.

Today was a particularly hot day and the kids swam for two hours straight. Ruby, known for her lack of exertion in all things physically straining, was purple-lipped and wrinkled when I finally dragged her out, kicking and screaming. (Literally. I have witnesses.) She swam and swam, from me to my friend to my friend's daughter and back. I tossed her far and she swam back. She learned to do a dolphin kick with her sweet little arms tucked behind her back. She got tons of exercise today and loved every second. And so did Oscar.

So I really wanted to say yes, just this once, to a snack shack indulgence. But I know better. Ruby gets carsick
before she gets in the car because she remembers that I once gave her gum under those circumstances. She knows that the school district special ed office has a fun water cooler in the copy room and starts whining about how thirsty she is as soon as we park outside the building. She's a savvy one. If I give into one of these treats today, I'll hear about it the rest of the summer.

It is times like these that I especially despise Oscar's diagnosis Prader-Willi syndrome and whatever is causing Ruby's constant hunger and slow metabolism. I feel my anxiety level creep up, right alongside my self doubt. I get snippy and frustrated and resentful of all those other families with their sticky-fingered kids.

I ruminated all through naptime and finally hatched another plan...a plan that did not involve the pool or any place we frequent on a daily basis. A plan that was not responding to the whining or questions, but my own need, once in a while, to not feel like a mean old ogre.

So I told the kids after dinner that we were going out for ice cream. We do this about once a year, never for any good reason (lest that good reason be an excuse for future outings) and today seemed like the day. Because what is summer without an ice cream cone?

(When I whispered conspiratorially to the ice cream scooper to only give 1/2 scoop to Oscar and Ruby, he bellowed, "I can make it smaller, but it still costs the same!")

Thursday, July 16, 2009


I am a Hopeful Parent.
But I cannot get that Hopeful Parent bling onto my blog.
I've cut and pasted and cut and pasted and pasted and pasted.
Nothing nothing nothing happens.
Then, it shows up in the wrong place.
I cut and paste again -- the code and bling both vanish.
I'm getting frustrated
I want that damn blog bling.

But before you come to my rescue, go read today's post 2 Per Bag.
It's a fabulously written and very moving post.
And as long as you are helping me, add that blog bling to your blog too.
Lots of great stuff over there, every day!

Friday, July 10, 2009

A Very Cool Kid

Yesterday I found myself in a conversation with the manager of the pool we belong to about Oscar's swimming ability and whether or not he should be allowed in the shallow section (a.k.a. the baby pool). He was in the process of kicking Oscar (and Abe, and all the other big kids) out when I approached him. Oscar was sitting floppily on the steps. He had just finished his lesson and was pooped.

Before I knew it, this guy was describing Oscar's "look" to me. He referred to the way Oscar's goggles slip down making his ears stick out and smooshing his eyes. He swept his hand over his own face in a downward motion to indicate Oscar's low affect. While I was the one who mentioned that Oscar had special needs (and therefore should be allowed to stay in the shallow area since he could not yet swim a lap)...I was still somewhat offended.

Today, at Target, Abe got Oscar to try on some mirrored sunglasses. He had chosen a pair himself, needing something for his evening baseball practices and games when the descending sun can be so bright and distracting.

I debated about whether to let Oscar get them. They were $20. And they will get lost or broken. But, with these on, Oscar's low affect looks purposeful, even cool. And so I bought them. Because he is, you know, a very cool kid indeed.
And, for that matter, so is his big brother.

ps. the manager only had Oscar's safety in mind. he was letting me know he had noticed Oscar swimming in other areas of the pool. he was not, i don't think, intending to be disrespectful.

Thursday, July 9, 2009

Ruby Chuckles

So much of what I write about Ruby has to do with my frustration, angst and uncertainty over her temperament and food obsessions. She's a fiery little kid who likes to be in control and has a quick temper, but she is also hilarious and a source of great joy.

Yesterday, I was busy chopping veggies for our dinner salad while Abe was emptying the dishwasher ( I just had to sneak that in there...with baseball sadly on break for a few days I am cooking and Abe has time for chores.) Anyway, Ruby and Oscar were in the living room and Ruby had somehow convinced Oscar to engage in some non-zoo imaginary play. I wasn't paying too much attention -- after all they were occupied, together, and not fighting. But there were clues that she had The Three Little Pigs on the brain. She had built a tiny house for one with couch pillows, and there was vague talk of a wolf.

Now Oscar is not a particularly loud kid, so Abe and I shared a brow-raising glance when Oscar bellowed in a deep booming voice, very very unlike his own sweet tone, "And I'll HUFF and I'll PUFF and I'll BLOOOOOOW your house DOWN." And then, immediately following, before the "n" in "down" had stopped ringing in my ear we heard Ruby's impatient ever-controlling reply, "OSCAR! You're not BLOWING!" Abe and I erupted into hushed giggles in the kitchen.

And then today, she had us in fits again. Ruby is creative and bold, and insists on doing everything herself, her way. She chooses her own outfits -- brightly colored polka dots layered with stripes in a different color scheme. She buckles her own seat belt no matter how late we are, must pack her own backpack, and pinches 4 or 5 barrettes into her uncombed hair then admires herself in the mirror. She's also incredibly perceptive and sensitive. So any suggestions or corrections, if not carefully handled, can easily end in a tantrum.

So, today, when she ran from her bedroom yelling, "Look, Mommy, I put on my badysuit all by myself!" it took every ounce of self-control to congratulate her without a hint of a smile. She stood proudly while I snapped her picture.

Wednesday, July 8, 2009

Character Sketch -- Oscar

As I've mentioned only a bazillion times, I'm taking an online creative non-fiction writing class this summer. It's interesting, fun, and challenging...and I am so thrilled to be doing something that feeds my soul. My favorite days are ones I can escape for a few hours to my favorite cafe to read the assigned essays and try the writing exercises. Here's what happened when I found myself not alone, but with Oscar, in a cafe on the day the "Character Sketch" exercise was due.

The cool breeze on this foggy morning is a relief after a few days of uncharacteristic heat here in Berkeley. I’ve exchanged my silver flip flops for my scuffed silver flats and donned frayed jeans and a navy t-shirt. Oscar is wearing his orange fleece, the one he insists on every day. As usual his jacket is zipped all the way up and his hood is tightly cinched around his sweet, though noticeably inexpressive, face. I didn’t check, but if I had to guess I’d bet he is wearing at least three t-shirts underneath. Some days he wears two pairs of underpants, or two pairs of socks, and every once in a while I catch a glimpse of his favorite blue and green striped pajamas peeking out from under his pants. “Remember to take the old clothes off before you put on the new”, I remind him. “Oh, I forgot”, he always replies. But he didn’t forget -- enough is just never enough, whether it be food, plastic zoo animals, markers, or, apparently, underwear.

We’re at my “office” – a cafĂ© in Berkeley with foamy lattes, a large outdoor patio with clangy metal tables and generous umbrellas, and a smaller indoor space with wooden tables and repurposed dinged up church pews providing seating along the walls. We sit next to each other on one of the shorter pews, each with our very own small round table on which to work. His dark blue backpack is partially unzipped revealing two Magic Treehouse books and the phonics workbook I packed for him. I have visions of the two of us working companionably for an hour or so, me on my writing, he on his phonics, while Ruby is in school and Abe is at camp. He, though, keeps asking when I’ll get his snack and when we will leave, starting a few moments after we arrive. Kids with Prader-Willi syndrome don’t do well with uncertainty. “Mommy always has a plan, right Buggy?”, I say, using my affectionate name of the month. “You’ll have your snack here, we’ll do some work, and then we’ll head to the market.” “How long?” he asks again, looking up at me. His brown eyes, round and deep like those of a fawn, distract most people from noticing the blackheads and tiny red bumps that cover his forehead, nose and chin. At eight he is already showing some signs of puberty.

I set up my computer and check a few emails while I wait for the coffee line to go down. The barrista is chatty today and the line keeps growing, as does Oscar’s impatience. He clears his table off, quietly refusing to read or do any workbook pages, both favored activities. He gets up to twice to check on the line. “It’s dow dow dow down to four people, Mom” he reports, his face contorting with the effort of getting the words out. Waiting, especially for food, is not his strong suit.

I finally haul myself into line, leaving Oscar at his table, within sight, and return a few minutes later with my breakfast and his snack. “What am I having?” he asks, anxiety lacing his words. “An egg and some baguette” I respond. “Oh, no milk? Why no milk?” he wants to know. I used to always get him milk when we came here, but ever since he and Ruby got diagnosed with hypophosphatasia (soft bones) as well, we’ve had to cut down on his calcium intake. It’s just another wrinkle in our family’s already complex food situation.

With his snack finally in front of him, he relaxes and takes a bite of the baguette. “Mom, why why why why do you just keep looking at me?” he says with a smile. “Cause you’re cute”, I reply. “Well, stop!” He’s smiling, but he means it. He turns away from me now, and the hood of the orange fleece masks the back of his head – one leg twisted onto the bench and the other in a half kneel as he continues to savor his snack, privately. He has eaten the rubbery white of his hardboiled egg and is leaving the greenish yellow yolk behind for now. With his small slightly crooked index finger he pokes each remaining toasted crumb, and licks it off his finger…crumb by crumb. The look on his face is one of ecstasy, as if he was savoring his very first bite of chocolate after a long period of deprivation. Sometimes, he “forgets” and goes after some of the crumbs that have fallen onto the grubby brown laminate table. “Nonononnononono” I scold. Caught in the act, he visibly startles, and mutters “Oh yeah, I forgot.” I only have to remind him twice more.

When all the crumbs are finally unearthed, poked, and licked from between the bits of shattered egg shell on the small white plate, he returns his attention to the now crumbled yolk. He does not like the yolk, but it is there so he will eat it. I know this. But he does it slowly, as if I am forcing him, taking breaks to fill his plastic cup with water from the nearby brown jug. I’ve given up hoping he will not finish every last morsel on his plate, just as I’ve stopped expecting him to remember not to drink the salad dressing after the lettuce and tomatoes are gone. People with Prader-Will syndrome don’t ever feel full and most experience constant hunger. Since he was a baby we’ve been following a strict routine around food. Oscar only eats what we give him, when we give it to him. No amount of whining or crying or tantrumming will change our approach. He has come to accept the routine, but he certainly makes the most of every meal.

Occasionally, while working on the yolk, Oscar buries his head in the corner of the pew, his feet poking out behind him awkwardly. He closes his eyes for a moment and then returns to the yolk. Ten minutes later all that remains on his plate are the white bits of shattered egg shell.

Relieved from the call of the yolk, he now seems energized and pulls up his blue backpack and gets going on his phonics workbook. Finally we are where I’d envisioned. Hard at work, side by side. I sneak one more peak at my beautiful boy. He sticks his hand up to say “STOP!”, but he can’t keep that smile from escaping and we dissolve into giggles, together.

My aim in the sketch was to portray some aspects of Prader-Willi syndrome to an uninitiated audience. While I think I'm on the way to achieving THAT goal, it doesn't feel like a complete picture of Oscar. So until I write the rest, here's another side of my middle boy, proud of the bird exhibit he built with his kapla blocks.

Tuesday, July 7, 2009

Still Perplexed

Rummaging through my collection of partially written posts this afternoon, I stumbled up on this from May 29, 2009:

Ruby asked for a snack this afternoon, like she always does.
I reminded her that she'd had her afternoon snack at school.

She didn't have a meltdown.
She just nonchalantly told me that, actually, she didn't.
She passed on the school snack because she wasn't hungry then.
She wasn't insistent, just informative.
She wasn't lying.
She looked at me as though that was the most normal thing.
To pass on food.
To not feel hungry.

Maybe the modeling and the language are helping.
Maybe she's realizing that Oscar isn't her only model.

Maybe I can relax a teeny bit.

Well, we all know that "relaxing a teeny bit" is not my forte. I did, though, for a couple of days. Ruby continued to tell me that she was passing on afternoon snack at school and I continued to give her snack at home. I was downright thrilled she was starting to hear that voice in her that had never before grown louder than a whisper saying "Hey, I think I'm full".

On day four I got suspicious. I started asking her if she was SURE she didn't have snack at school. She was calm, clear, believable. But I still asked her teacher.

"Ruby? Skip snack? Never. No, Ruby always eats snack," she replied.

And so I am back to the beginning. Wondering whether we've created this obsession with food with all the restrictions we need in our family to keep Oscar safe, or if she feels the constant hunger too. Today, she started asking for snack at 9am. She asked every 5-10 minutes until it was finally time for snack. I know, some kids are just always hungry, but I can't can't can't give her food every time she is hungry. It is too complicated in our Prader-Willi household and her metabolism cannot handle it. I'm concerned about the extra weight on her slightly compromised skeleton. I'm concerned that she also has some sort of genetic eating disorder. And I'm mostly concerned that however we handle the situation will only exacerbate her obsession.