School Conferences

Oscar and Ruby were home from school on Monday and Tuesday for conferences.  Our meetings weren't until Tuesday afternoon so Ruby asked to visit her old preschool. She spent Monday morning there while Oscar and I walked in the hills, talked and worked on our computers. 

Later in the day we drove a few towns over to Abe's cross country meet. It was a gorgeous fall afternoon and we hung out in the shade of the eucalyptus trees. Oscar and I cheered on the runners while Ruby practiced the monkey bars at the nearby playground.  Abe ran well and was exhausted. He plunked down on the team bench after his race and couldn't get up to cheer on his teammates, which was unusual.  (Good thing soccer practice was canceled due to the previous day's rain.)

 

Oscar cracked me up when, after Abe's race, he begged to stay and watch the 7-8th grade girls run.  We all know he has a crush on the fastest girl at Abe's school and we tease him endlessly.  I tried to capture his embarrassed smile.

Mom!

Stop!

I'm getting embarrassed!

On Tuesday Ruby, Oscar and I went for a bike ride. I'm still awed by the fact that we can do that with relative ease. We rode to the local bike shop where I finally got my brakes fixed (for free!) and then headed uphill to the coffee shop for steamed milk (Ruby and Oscar's snack) and a latte for me.  Ruby doesn't have gears on her bike but she just pumped and pumped without complaint.

Conferences were in the afternoon. Ruby and Oscar drew pictures and read up in the school office while Paul and I met with their teachers.  What a treat! I love the care and attention given to each student at this school.  Ruby is adjusting well to kindergarten and feels comfortable and confident with her new friends. She's working on her inventive spelling and writing notes and letters to me, her friends, her teacher.  We've noticed a huge improvement in her mood, behavior, and even her obsession with food since school started and I'm sure it's because she's finally getting to go to this school. She's been visiting her brothers' classrooms every morning for her entire life and always hated to leave. Finally she has a place there too.

Oscar's two teachers glowed with praise for him. Even though they've both known him for years, none of us really knew how this transition to fourth grade would go.  It's definitely a step up in expectations, organization, and content.  We'd all expected some more bumps -- but it's been pretty smooth so far. (I knocked on wood at the conference and I'm knocking again now.)

We learned that he's finally excited about writing.  He's had more tantrums and episodes of willful non-compliance about writing than anything else over the years. We've spent hours working with the behaviorist and coming up with new approaches and reward systems but his executive functioning and anxiety really impeded the creative writing process.  He started this year off using his computer with a couple of adaptive programs -- Co-Writer and Kidspiration -- but writer's workshop time was turning into typing lessons because he's really just learning to navigate the keyboard. The humanities teacher and aide switched tactics -- they're still using graphic organizers to help Oscar plan his writing but now Oscar's doing a lot of dictation.  I was amazed at the details he incorporated into his memoir piece about our family bike ride in Sea Isle this summer. He also used techniques and agreed to let his teacher share it as an example with the class even though it wasn't finished. (Oh the flexibility that required!!)  I'll put the finished piece up here when he "publishes" in a few weeks. His teacher also shared how much fun he is to teach, and that she's found that some of the modifications she's made for Oscar have proven to be really helpful for other kids in the class too.  She's so great at meeting each kid where they are and has helped Oscar settle on a "just-right" series of books where he can really focus on building his comprehension skills.

We also learned that Oscar seems to be really understanding the science curriculum (electricity and magnetism) and while he has trouble physically creating the circuits himself -- those wires are tiny and require fine motor precision - he's very observant and helpful in group work. He got 100% on the quiz!  (Abe said he failed that one in 4th grade).  The math and science teacher has also been creating modified math worksheets for him to do with the class so he has that sense of being in the group even though his math skills lag a couple of years behind.  As I mentioned in my Hopeful Parents post -- Oscar is so motivated by this and is finding math very fun despite knowing that he's behind. Pretty fantastic.

We also learned that he's enthusiastic, hard-working, and well-liked...all stuff we knew but it's so nice to have confirmation.  My favorite anecdote -- one time, towards the beginning of the year when everyone was still settling in, the math teacher was working with Oscar individually and congratulating him on really working through a problem. His classmates were eavesdropping protectively, not sure yet if the teacher would "get" Oscar (they didn't realize just how long she's known him!) and also unsure about how Oscar would do with this more difficult curriculum. When they heard the praise they apparently cheered "Way to Go OSCAR!" and "Yay Oskie!"  It was heartwarming to hear, again, how much they look out for him. 

Working on homework before music class

I'm so filled up with gratitude for this little school and the way they are able to meet the academic and social-emotional needs of both of my wildly different kids, and Abe before them.  And I'm amazed by Oscar's peers who adapt, encourage, and include so naturally.

Middle school is just around the corner -- I'm starting to consider the options.  I really don't know how we'll create a safe, supportive, and inclusive environment in an entirely new school.  We'll just have to...we'll just have to.

The Beginning of a Long Conversation (Hopeful Parents)

I'm over at Hopeful Parents today (!!) trying to answer some questions Oscar has about disability.

Come check it out, and stay and read other entries too. 

Six

Ruby -- my third, my last, my baby -- was born six years ago today.  

I remember seizing with joy and relief as I clutched her tiny body to my chest for the first time. It had been four years since Oscar's nightmarish birth, but the images of his blue floppy limbs lingered at the edges of the room until Ruby's lusty cry chased them away.

The boys were in school when she was born but came directly to the hospital afterwards. Oscar arrived first and enjoyed some moments with his new sister. He wasn't jealous, just curious.

"How did the doctor's make the fingers?" he wanted to know.

Abe arrived a little while later and immediately wanted to hold Ruby. He carefully inspected her long delicate fingers and caressed her mottled pink cheek. 

 

He was only two when Oscar was born and though I doubt he recalls the details, I'm sure the shadows of that scary day were lurking in the depths of his memory too. He was also starting to grapple with the reality of having a brother with PWS.  Ruby's birth, in all its loud and sleepless glory, was probably as healing for him as it was for us.

After holding her for a long while he gently laid her down beside me and said "Mom, can you keep an eye on Ruby while I go to the bathroom?" (These boys of mine took this big brother business seriously from the start.)

Tonight at dinner we honored Ruby, following a tradition borrowed from school. Abe honored Ruby for trading sillybandz with him.  Oscar honored Ruby for playing farm and pretend house. I honored Ruby for her strength and for always speaking up for what she needs even though she's the youngest in our busy household. (Everyone laughed at that because Ruby is the loudest, most outspoken person in our family and doesn't really need any more encouragement to state her needs.) And Paul honored Ruby for the nice conversations they have while hiking and biking.

Happy birthday sweet girl! We're so glad you're here!

7th Grade

Do you remember 7th grade?

I do. 

I remember my greasy bangs, prank calls and notes to my two best friends signed in code, folded into triangles, and passed secretly in the locker-lined hallways of my small town Ohio jr. high. Seventh grade was also when I had my first crush -- on the boy who sat in front of me in English class. He had blue eyes, wavy sandy-brown hair, and such a mischievously melting smile that I didn't even mind that he repeatedly rummaged through my little khaki purse with the turtle ribbon trim. We never "went together" but we did swap pictures. (I slept with his under my pillow for probably a year, maybe longer.)

I'm remembering 7th grade right now because Abe is celebrating his 12th birthday today and my living room is completely overtaken by 11 and 12 year old boys sporting sillybandz and skate shoes. They spent the afternoon playing mini-golf and laser tag and then returned here for dinner and what is turning into a rousing game of dart tag in the middle of our small house.  The furniture has been shoved to the corners of the room and they are smiling, yelling, pushing, laughing, chasing, joking, diving.

I can't help but wonder if the girls have noticed them yet. 

Probably, right?

And that makes me feel so darn old.

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.)