The Kind of Mom..

Yes, I am the kind of mom who dictates spelling words to her kid in a restaurant while waiting for the food to arrive.  Gotta squeeze the homework in sometime, and that gets tricky when O takes a power nap like he did today. He looks happy though doesn't he? Or maybe it's proud.

Ruby wanted homework too, so I dictated a sentence for her to write and illustrate in her "napkin book".

"I BIT THE APL"

It turns out that I am also the kind of mom who asks the kindergarten teacher for homework.  I did, I really did, because each night, as soon as the boys start on theirs, Ruby begs me to make up some for her too.  She wants so badly to be big...and I really love that she isn't, yet.

Hopeful Parents

I'm over at Hopeful Parents today writing about the importance of community in helping the first child diagnosed with autism reach his potential in life. Of course it's also really all about me. 

 

If you haven't checked out Hopeful Parents site yet, please do!  I'm continually impressed with the skill and authenticity of the writers I see over there.  

A Pretty Good Day

Another busy Saturday... Paul's company was sponsoring a shoreline clean-up so he scooted out of the house at 8am with Oscar and Ruby and a collection of buckets, gloves, and shovels. Oscar was a tad reluctant at first and really wanted to know how long they would be cleaning up trash. We made the mistake of specifying an amount of time -- one hour -- so then he was fixated on how that seemed like way too much time. In the end though he had a good time and felt great about all the animals and birds he helped by cleaning up their habitat.

After shoreline clean-up, they joined me at Abe's soccer game, arriving just a few minutes after Abe, who plays goalie, had a big save...and jammed his fingers.  Ruby plopped down on the moist grass and announced that she was going to change into her soccer uniform.  When I looked up from helping Abe with the ice, Ruby was sitting right there on the sidelines in her candy-cane striped panties pulling her white soccer socks up over her thighs as high as she could get them, which was almost all the way.  I wish I'd had the camera.

I scrambled off with Ruby to her game, where she ran around in a tight pack in 4 on 4 competition. This group doesn't play with goalies and is just learning the concept of passing, but the growth from last year in focus and stamina is amazing.  Just before the second half the coach said "I know you're going to score a goal this half, Ruby, whaddya say?" He held his hand up for a high five and she jumped to slap it.  Three minutes later she scored on a long kick through the pack.  She was beaming!

When we finally got home I settled into a cushy living room chair to write while Paul headed outdoors to attempt to tame the garden.  Oscar took a nap, Abe read, and Ruby played in her room.  After his nap, Oscar joined Paul in weeding the front walk and I wandered out a little later to tackle some overgrown bushes.  (These projects are so long overdue that we usually just stand at the edge of the yard, shake our heads, and go back inside.)

Right around 6pm, the time we should have been thinking about dinner, but weren't, Oscar started asking to go to the park to ride his bike.  I was still outside clipping the rosemary and Paul was pulling out a rose bush that had damaged our fence.  Oscar felt strongly and tears started springing out of his eyes as he made his case.  This is not a terribly unusual scene, but what struck me was what he said in the best calm voice he could muster:

"I just don't get why every one else in the family got to do something they wanted to do today except me.  This is the one thing I wanted to do today!"

While he was maybe being a teeny bit rigid, he had a darn good point and he articulated it beautifully.  His siblings probably would have just said "It's NOT FAIR" and stomped off to their rooms. 

So, guess what's at the top of the to-do list for tomorrow?

Oscar recovered quickly from his disappointment and we ended the day eating burritos atop a hill overlooking the San Francisco Bay.  The sun set a bit to the right of the Golden Gate Bridge, disappearing through bands of pink and orange behind the shadowy Marin Headlands.  Ruby and Abe kicked the soccer ball up and down the hill while Oscar counted the dogs and giggled at my silly jokes. 

And Paul said, "Today was a pretty good day." 

Time

Oscar's obsessed with his watch. I've posted here about his dangerous habit of walking across streets with his gaze fixed on the small blue digital face attached to his slender wrist.  This summer I had to confiscate the darn thing during his educational therapy sessions because he was checking the time so frequently that he couldn't concentrate on his work.  Today, when I picked him up from school at noon for his weekly OT appointment he looked at his watch, smiled and said,

"You're early. It's only 12:01. You don't usually get here till 12:05."  He was talking as if he'd caught me in the act.  Of what, I don't know.

He wants to know the exact time for everything -- what time will we leave for school, when will our friends arrive, how long does he have to spend on homework? It drives me a little nuts.

Our biggest issue with time, though, is around naps. Oscar still needs a nap -- he's exhausted after a long day at school where he works so hard physically, cognitively and socially to keep up.  He rests every afternoon for 1.5 to 2 hours and if he misses that nap, or stays up too late, we see it almost immediately in his behavior. More meltdowns, less flexibility.  Or he falls asleep. After a busy day and late night on Saturday, he just curled up on the couch and dozed off on Sunday morning while Abe and Ruby jumped on the trampoline and built Wedgit structures that inevitably crashed inches from his head. He'd shift or stretch but his eyes stayed closed.

As tired as Oscar gets, he resists the transition to nap. Every single day, as I'm tucking him in, he asks me, "How long?"  I never answer with an exact time because I know that if I do he won't go to sleep.  Instead he'll just obsessively check his watch until the appointed time and then pop out of his bedroom, pleased but unrested. 

Every once in a while one of us will slip and say, as a way of coaxing him into his room, "C'mon Oscar, just a short nap."  That one little word -- short -- can set off a 15 minute discussion of what that means exactly.  Half-hour? Hour?

Today, as I was tucking his yellow down comforter around his narrow frame and straightening the hand-made quilt on top, Oscar hesitantly asked, "So, when can I get up?"

He knows that some days my patience is gone by tucking time. Some days I've already spent thirty minutes talking him through the pre-nap bathroom routine: sit down, no talking, wipe, flush, wash hands (rinse, soap, rinse, dry). Some days I've emptied and refilled the dishwasher, sponged off the table and counters, taken out the garbage, and thrown in a load of laundry and he's still in the bathroom. 

Today was no different, but I was feeling patient. 

"Oh, I'll know when you're done napping," I replied with my special all-knowing smile.

"You will?" he asked, smiling back, no doubt relieved at my light response.

"Oh yes", I joked, "I peek in on you when you're sleeping and I can tell. You're like a turkey in the oven with one of those temperature thingies that pops up when it's done cooking."

"I am? Really?" he asked, giggles erupting around the edges of his red lips.  I know he was trying to tell if I was teasing him.  He was also enjoying the turkey metaphor, even though he's never seen one of those thermometers. (I so rarely reference food when I'm talking to him that the reference alone is worth giggling about.)

He ended up sleeping for two solid hours.

At dinner tonight I challenged him to not look at his watch. Every time he did I would yell "AHA!" and he would laugh and bury his wrist back in his lap. It quickly became a game, with Abe, Ruby and me all baiting him with questions like "So, Oscar, how long, if you had to guess, until bedtime?" and "Daddy said he'll be home in 20 minutes. What time will that be?" 

He fell for each silly question -- first lifting his elbow in his slightly exaggerated fashion, then jiggling his wrist to work his sleeve down his forearm to uncover his watch.  But, just when his eyes would come to rest on the little blue face, he'd realize and start giggling all over again. 

It's taken me a while, but I really think humor is a great behavior management tool for Oscar. Everything we read about PWS when Oscar was a baby emphasized that people with this disorder are too literal and have trouble understanding the humor in situations. Yes, Oscar definitely struggles with subtler social cues. He doesn't get all the jokes, but he actually really enjoys humor and gentle teasing.  And I think all the giggling releases some of his pent-up anxiety and wards off tantrums. That's my theory anyway!

Transitions and Paperwork

I'm sitting on the scuffed hardwood floor in my bedroom right now, surrounded by piles and piles of stuff. Paul and I have decided that we have to "address" our bedroom.  Binders, books, newsletters, files, printer cartridges, spare change, financial records, and dust, lots of dust, cover every flat surface. And while there's a large armoire desk in here, it too is so weighed down by odds and ends that I can't work there.  Instead I move my laptop from room to room, leaving bills on one table, school forms on another. I can't find the stamps, or the envelopes. It's time to deal.

The problem is that "dealing" isn't easy. So many of the binders, books, and files stacked on every shelf and corner contain information about Prader-Willi syndrome or Oscar and I actually have to go through them sheet by sheet to figure out what I should shred, recycle or save. I've been avoiding this for years. 

Paul found a large plastic bin in the basement that I can use to save the stuff I don't need every day but am afraid to part with. So far it's filled with VHS tapes: four from previous PWS conferences, one Discovery Channel show on PWS, and a documentary "Maribel" about a young woman with PWS.  I don't need these every day -- they don't need to be in my bedroom or even on the main floor. I'm trying to decide what else will go in there -- the developmental tests from 2001 on? The nearly 10 years of PWSA and PWCF newsletters? Medical records and notes from therapy sessions starting in December 2000. IEP files starting in what year?

Sometimes I actually do need to look at this stuff. Just last week I scoured through five years of speech notes to find the recommended interventions for stuttering. And the week before that I lifted several paragraphs of verbiage from a 2007 IEP mediation agreement.

School started a couple of weeks ago and all three kids are settling very nicely into their classrooms. Abe is a 7th grader now and cracking me up with his sudden interest in choosing his outfit, combing his hair and learning to text. He's also working hard in his classes and playing a new sport.  Ruby's a kindergartner now, and I really have never seen her transition so smoothly from home to school and back. Instead of clinging she's hugging, instead of growling she's waving. She bounces into her classroom in the morning, and when I pick her up, unintentionally late every day, she's cleaning the tables with a soapy sponge and a wide smile.

Oscar's a fourth grader now. His classmates are the same ones he's been with since Kindergarten and his teachers have all known him for years.  His transition has been smooth too -- no major behavior outbursts or fits of non-compliance. Sure there have been a few sticky parts, but with his aide and teachers, we're on it. Still with any transition, even in circumstances as familiar and friendly as these, there's a lot of work. I'm coordinating with therapists for his OT and speech services, getting his computer programs up and running, creating new ways for us to communicate. (I got that website going!)  I still need to write a letter to the school staff reminding them of Oscar's issues. I think they're doing great but they requested a refresher. (Yes, this school ROCKS).  I also need to revise his lunch activities chart and fill out a form about my goals for him this year. Our IEP is still not resolved and I'm waiting to hear back from the lawyer on that.

It all gets a little overwhelming.

On Saturday I attended our local PWS support group meeting in San Franciso. Paul and I started going to these meetings when Oscar was just two months old, and these people are like family to us now.  We've supported each other through tricky times -- surgeries, dealings with school districts, concerns over food and behavior. We share information on doctors and the best place to get a sleep study. Most of the time we bring the kids -- there's free childcare -- and that gives Oscar, Abe and Ruby a chance to interact with kids who face the same challenges, whether as a sibling or as a kid living with PWS.

I hadn't been to a meeting in a long while. The kids' sports and school schedules often conflict and I sometimes find myself choosing a "saner Saturday" for the whole family.  This week, I left Paul juggling two concurrent soccer games and a birthday party.  I was so glad I did.  We welcomed two new families and a group of three film-makers who are starting to work on a documentary about PWS.  We took turns giving updates and requesting help on difficult issues. 

As overwhelmed as I have been with what it takes to keep a kid with PWS going, I didn't find the need to even talk about our family very much.  In part I sensed that others needed more time. But also, when I looked around the room at the new and familiar faces I realized, again, that my experience is their's. I am not alone. They know all about the piles of paperwork, books and medical records. They know all about school transitions and unresolved IEPs.

I didn't need to give my overwhelm a voice. And I left calmer, more grounded, and also assured that we are on a good path with all things Oscar.  We just need to keep going.

Things I learned on vacation

Did you know that you can lift up that metal LAVATORY plate and slide the knob over to open an occupied airplane bathroom?  It's an excellent trick if your child with special needs has been in a locked stall F-O-R-E-V-E-R with no sign of emerging.

Also, even if you ask very very nicely, the Fudgie Wudgie Popsicle Man will definitely not move his ice cream cart, not even a few measly feet, from his spot spitting distance from your beach towel where your child with Prader-Willi syndrome sits, mouth gaping and glazed eyes fixed on the frozen treats that every other child in Sea Isle seems to be enjoying.

And, with enough coaxing, you can convince your very stubborn child to change his putting stance from this:

to this:

by pretending to change his last name to "Woods", even if you are not a fan of that particular golfer. Technique works best if administered by athletic older brother.

("Oscar Woods" now enjoys mini-golf so much he wants to have a mini-golf birthday party.)

Hopeful Parents

I'm very excited to be posting at Hopeful Parents today (and on the 27th of every month).

Hopeful Parents is a wonderful online community of parents of kids with special needs.  Come read my post and check it out!

Sea Isle

For five years now my family has rented a place in Sea Isle City on the Jersey Shore in August. We fly out from California and meet up with my parents, brothers, partners and kids to spend the better part of a week before heading to Connecticut with Paul's family. I always look forward to Sea Isle, especially the long days at the beach reading and body-surfing.  Tumbling in the waves, I surrender in a way that seems impossible in my daily life.

The weather was beautiful this year (just one rainy day) and I finally got some exercise.  I was sore for days after Beach Boot Camp but it felt so good to work my long-ignored muscles.  Later in the week we found a yoga instructor to do a morning class on the beach for our family.  We laid our towels in an arc on the sugary sand and faced the ocean. After a summer of thinking at every turn that "I'm not doing it right" it felt so good to gaze out into the waves in tree pose.

The highlight of the vacation though -- after the clam and cocktail-filled happy hours, riding the roughest waves, and watching the six cousins create hama bead designs -- was our family bike ride. 

As we set out from the condo, our three kids miraculously riding alongside us, I turned to Paul and said, "Look at us! A year ago I never thought we'd be able to do this, but look at us!"

The ride was not without incident of course -- just after I celebrated the milestone with Paul, Oscar's tires slipped on the sandy sidewalk and we looked back to see him sprawled on the ground, tangled up in his bike. He'd cut his lip, and the blood mixed with his tears and ran down his chin.

And yet, somehow we managed to go on.  It took an eight block walk to CVS for water and paper towels, but Oscar did recover from the fall and remount his bike.  He overcame his resistance to using coaster brakes and stopped dragging his toes when Abe and Ruby demonstrated the technique for the 100th time.  He overcame his anxiety about pedaling into the wind when Paul explained that the winds were wimpy in the morning. (That's why Grandpa always sails in the afternoon!) He overcame fatigue in the last twenty blocks when I distracted him, first by looking for punch buggies, and then by watching the block numbers whiz by.

As I coasted beside Oscar on the last leg of that four mile loop (with stops for mini-golf and lunch), I realized that the bike ride was a perfect example of how things tend to go for us. For any endeavor, whether it be participating in school, playing with friends, or learning to ride a bike, Oscar supplies an enormous amount of perseverance. And the rest of us -- teachers, coaches, friends, family, even Abe and Ruby -- contribute mountains of patience and scaffolding and encouragement and humor and shaping. It's exhausting, but our collective efforts often pay off.  And I am grateful for that.

Baggage

Hello out there! I took an unintended four month break from this blog and don't know where to start. Four months is a long time.  So much happened...and yet everything is the same. Here's what I wrote last week, on the eve of our vacation:

I'm packing for our annual big trip east, stuffing way more shorts, tees and hoodies into my suitcase than I really need, and reflecting on the summer thus far. It's not gone exactly like I planned.

For one, I've completely neglected this blog and writing in general which has left me feeling rather unmoored and completely disconnected from my special needs community. I've compensated by overloading a few "typical" friends with all sorts of "life sucks" anecdotes. They're patient but I'm sure it's getting old.

The sucky stuff has had mostly to do with medical appointments, IEPs, and associated boatloads of paperwork, emails and phone calls. I also scheduled too many therapies and activities (all important ones) with too little time for transition so that too many days I found myself careening around tight corners on my way up and over the steep hill to warmer climes where the kids swim, only to find that the last spot in the pool's teeny tiny parking lot had just been taken. Swearing under my breath (or sometimes not), I'd push a whiny and clingy Ruby out of the car into the arms of the ever responsible Abe so that she'd make it to swim team practice on time. Oscar and I would then park the car down the narrow windy road and hike back up. I had to keep my hand twisted around his swimshirt collar to keep him from straying into the middle of the road because he's been in one of those phases where he's checking his watch every five - I kid you not - seconds so that twice he almost gone flattened by a speeding car even as I screamed at him to stop checking the damn watch. As we reached the pool I'd glance resentfully at the never used disabled parking spots and berate myself twice -- once for never inquiring about getting a blue placard and another for even having the nerve to think we should qualify.

Now there have been some incredible times as well. Like Abe's baseball team winning their very first tournament in four seasons. For reasons completely inexplicable to me (given my non-sports upbringing and never before interest in baseball) I get completely consumed by this team. I think it's an island of sanity in the sea of craziness. I let my worries slip away at baseball games, and I swear, for five months of the year, it saves me. One family said they'd never seen as pure a smile on their son's face as in those moments following that big win. I saw the same smile on Abe's face...and wonder too what mine looked like.

And Oscar learned to ride a bike without training wheels. Really learned. Gears, brakes, kick starts, up hills and down, ride-around-town-with-confidence learned. This is high on the list of things I never thought he'd do when we first digested PWS, and to think that now we might be able to ride bikes to school, or rent them at the beach and ride as a family...well, this just floors me.

Ruby learned to both swim and ride a bike. (She wasn't about to let Oscar outdo her). And she's starting to spell words on her own, which is fascinating. I don't remember her first spoken word, but I'll always remember her first written one: BTRFLI. Her lengthening legs and interest in spelling and playdates remind me that kindergarten is only a few weeks away.

And, yet, even with all these wonderful moments, I still feel resentful at times. It would be dishonest to say otherwise. I'm tired of the incessant coordinating and scaffolding it takes to keep a kid like Oscar going. (And now Ruby's been seeing an occupational therapist too, so we have more exercises and home programs to follow.) I know I should be grateful and I really truly am...but right now the resentment is eating me and my usual gratefulness right up. I'm snippy and short and distracted and really no fun to be around.

Something has to change, and I think it has to be me.  PWS is not going away, and, thankfully, neither is Oscar. He has a dream team of people working with him privately and at school. He himself is motivated and fun, two traits I'll never take for granted. The IEP and the school stuff will sort itself out. I just have to make sure it doesn't overtake me first.

What I need is a shift in thinking. If I could mentally pack up the unsavory parts of our life and put them temporarily aside so that my mind was free to appreciate all that is working so well, I'd probably be a whole lot less irritable. If I could open that suitcase only when I needed (say, when the lawyer is on the phone advising me about "stay put" and "10 day notice" letters) and then zip it right back up again I think I'd be a whole lot happier.

This is what came to me as I overstuffed my suitcase with books and clothes for our trip east. I think I will pack another bag -- a bag full of mental crap -- and leave it right here so that vacation might actually be vacation.

Prader-Willi Walk-Along

Ok, so I've been pretty absent from the blog-o-sphere.  I started a post a few days ago about being home last week with Oscar during his spring break.  I wanted to complain about all the medical crap we took care of and how it led to more tests and questions for me but thankfully resulted in less stuff for him. (glasses: optional, scoliosis brace: no).  I was going to go on and on about how Oscar's spirits soared all week, even when he was struggling with horrendous disfluency and fighting for every word, while mine just plummeted, tired of the doctors, tired of the stuttering, and how it made me feel even worse to be the one complaining. But then I cut my hand with a butcher knife trying to remove an avocado pit and when I got to the ER a family was in distress over the attempted suicide of a loved one and, well, I finally got some perspective.

Instead of that post, I steered my efforts toward our annual Prader-Willi Walk-Along fundraising letter.  The walk is this Sunday and we're gearing up.  Boxes and boxes of sky blue t-shirts sit in our basement, along with thirty some informative signs and their accompanying stakes which we place along the mile plus walk route that looks out over the San Francisco Bay. We'll drag out our huge white tent to use as the registration booth and print out several pages of labels with Oscar's picture to be worn by friends and family who join us for the walk.  I'll make lunches for our family and our Southern California PWCF leaders who always come north to help our local support group pull off this event.  We'll help set-up, we'll walk, we'll sit and enjoy the band, we'll talk with other families while the kids play picnic games and get their faces painted.  And at the end of the day we'll feel grateful for who Oscar is, for our friends and family who support us from near and far, and for the wonderful people we've met on this unexpected and admittedly unwelcome journey. It'll be good.