I just found out that the House passed HR 55 which establishes National Prader-Willi Awareness Month and encourages continued federal research.
This is HUGE -- the increased awareness will pave smoother paths for all kids with PWS as they struggle with the challenging aspects of this syndrome. Awareness has changed O's life -- but educating people is so hard. This will help Oscar, but it will really help babies yet to be born, and families who are struggling in their own schools and communities to be heard, to be taken seriously.
So I send a big thank you to all the parents, local and national PWS organizations, and legislators who obviously worked so hard to make this happen!
Here is a video of Representative Ed Royce (R-CA) presenting the bill that he co-authored with Representative Jean Harman (D-CA):
Sunday, December 27, 2009
Thursday, December 24, 2009
Open the DOORS!
I took the kids dress shopping in San Francisco on Tuesday. I know that sounds crazy -- three kids in a department store -- but I needed a fancy dress for Paul's cousin's wedding in NJ next week. The boys are ring bearers and will be wearing tuxes. Ruby and the other flower girls will be wearing matching black and white polka dot velveteen dresses with a red bow around the waist. After much debate Paul thankfully decided to rent a tux as well, but I was going to need something fancy too. I tried to squeeze into the black taffeta skirt I bought back in, uh, college. 1989? I shouldn't be depressed about the 6 inch gap in the zipper when I tried to get that thing on. I tossed out my velvet dresses from my professional days in the early 1990s long ago, but I bet I wouldn't have been able to coax their slim silhouettes above my knees either.
So, off into the city we went, with the promise of BART train rides and ice skating in Union Square after dress shopping. I did find a dress...one that Abe picked off the rack actually. (The kids scoured all the racks in the dress department gathering all the black dresses in my size. We collected two armloads and settled into the dressing room for a long fashion show.) It was pretty painless, if you don't count Oscar practically falling asleep on the dressing room floor and Ruby crawling underneath the doors taunting Abe and Oscar. But that's all to be expected.
With my sleeveless dress with an embroidered taffeta skirt nestled in the shopping bag we took off for Union Square for a gander at the red and gold ball decorated Christmas tree and the outdoor ice skating rink. On the walk there Abe asked me repeatedly if the ice was real -- a reasonable question because it wasn't exactly cold outside and because four years ago we went skating on plastic "ice" at a different shopping center here in northern California. It was horrible.
The ice in Union Square was real and the rink large enough but the lines wrapped around the temporary building. One line was for ticket holders -- those organized people who pre-purchased earlier that morning or online. The other sad line was for people like us -- anxious kids and exhausted parents who realized the journey through this line to buy tickets and then back through the other was a two hour ordeal. Ruby scampered up on top of the adjacent wall in her black and ivory Christmas dress while Oscar stuck to my side asking repeatedly "So are we going skating? How long is this line? When are we going to get in there?" It was the kind of anxious rapid-fire questioning that doesn't allow time for me to answer, and my answers, if not carefully crafted, can lead to higher anxiety levels. I can't think when Oscar is asking questions like that so I usually ask him to calm his body while I come up with a "plan".
The "plan" was to blow off the skating. Maybe come back over the weekend, with Daddy, with pre-purchased tickets in hand. Oscar and Ruby were on board with that plan but Abe's enthusiasm turned to a sulk and my guilt over dragging the kids all the way into the city just for dress shopping overwhelmed me. I tried to salvage the morning by suggesting we head across the street where there was rumored to be a giant gingerbread house displayed in the Westin St. Francis Hotel. The rotating "sugar castle" turned out to be so huge and so professional looking and not at all ginger-bready that none of us believed it was actually made of gingerbread until I read the sign. Twelve hundred pounds of gingerbread, 60 pounds of flour, 300 pounds of sugar, 400 hours of work...it was certainly real. When I spotted a few missing gum drops along the surrounding train tracks the kids finally believed me (and wanted a gum drop, of course.)
We spent maybe three minutes looking at that marvelous sugar castle and then started on a quest for a lunch spot. The streets were crowded with shoppers and holiday cheer seekers and it was hard to keep track of the kids. Ruby kept falling behind and I was so glad I topped her dress with her cherry red fuzzy jacket, the one with the hood and large pom pom buttons. Aside from being adorable on her it was easy to spot her little body among all the dark pants and tall boots on the sidewalks. Abe was voluntarily keeping an eye on Oscar which sometimes meant grabbing his arm and pulling him out of the way of oncoming walkers. Oscar was getting mad at Abe and Abe was frustrated with Oscar. I beckoned Abe to the side and gently told him that I could keep track of Oscar. Oscar was fine. He was keeping up ok and yes sometimes he didn't notice people walking directly into him, but he was fine.
After much more grumbling and whining we found a decent lunch spot -- a yummy mexican place where they serve warm tortillas with salsa and make guacamole right at your table. Abe's mood improved with food in his belly and I felt like I had partially salvaged the morning. After lunch we headed down to the BART station. As we went through the ticket gates we heard a train approaching and rushed down the escalator to catch it. It wasn't our train, but an eastbound train arrived on the adjacent track a few seconds later. I wasn't sure if we wanted to take that one either because I didn't know where we would have to transfer. After a second's hesitation we got on anyway. I figured that we could get off at the next stop if needed. As the doors started to close I realized that Abe had just barely jumped on the train in time, but that Oscar was still on the platform. We tried to stick our arms out to stop the doors but they closed anyway leaving me, Abe and Ruby on the train and Oscar on the platform, alone, in downtown San Francisco.
I started screaming:
Abe and I pounded frantically on the doors and I looked desperately around the BART car for an emergency lever but I'm not sure I would have left my post at the door even if I saw one. Ruby stood up on the seat and screamed in panic. I remember being worried that if the train jolted forward she would go flying. Other passengers jumped up and started yelling and banging too. Oscar was frozen. His arms were at his sides (not flapping wildly like when he is upset) and his large brown eyes were wide with fear. Someone must have found a switch, or a lever, or a call button, because after 10 seconds (you could convince me it was two hours) the doors parted and I pulled Oscar into my arms.
The other passengers fell back into their seats with relief and I huddled at the knees of my kids who had scrunched into the two cushion seat reserved for people with disabilities. Ruby kept screaming so I held her while I talked soothingly to all of them. Oscar was still somewhat frozen, but he did say "I was really scared Mom". "Of course you were sweetie, of course you were!", I replied, and I pulled him in for another hug.
Ruby was scared too, and it took her a long time to recover. She begged me to carry her on and off the trains as we transferred in Oakland, and then off again at our station. She also awoke that night with a nightmare about being left behind on the platform. She didn't want me to leave her alone in her room.
I was scared too, but my heart didn't race, my legs didn't turn to jelly. Despite my screaming and banging I was pretty calm inside. And I can't figure out why. Was it because Oscar wasn't outwardly panicked? Was it because I just couldn't believe the train would pull away leaving him there? Did I not have time to process? Or is it because we have already been through so much that this seemed small in comparison?
I do think I knew on some deep level that he would be ok, that he wouldn't try to hold onto the train as it pulled away, like Ruby might have.
I think I knew he wouldn't get on the next train that pulled into the station, like Abe might have, but that he would stay right there waiting for me.
I think I knew that we could just go one stop and then hop the next train back. We'd be back in just a few minutes, ten tops. He's nine. He would have been fine. I keep telling myself that is why I didn't panic.
And maybe I was also in a state of disbelief that I let this this happen. I should know better.
He is nine, but he has PWS and he just doesn't react quickly in these situations. I should know better.
He gets overwhelmed in crowds and new places. I should know better.
We are all fine now, even Ruby. And we've spent a lot of time talking about what to do if you get left behind on a BART platform. Not that it will ever ever happen again.
So, off into the city we went, with the promise of BART train rides and ice skating in Union Square after dress shopping. I did find a dress...one that Abe picked off the rack actually. (The kids scoured all the racks in the dress department gathering all the black dresses in my size. We collected two armloads and settled into the dressing room for a long fashion show.) It was pretty painless, if you don't count Oscar practically falling asleep on the dressing room floor and Ruby crawling underneath the doors taunting Abe and Oscar. But that's all to be expected.
With my sleeveless dress with an embroidered taffeta skirt nestled in the shopping bag we took off for Union Square for a gander at the red and gold ball decorated Christmas tree and the outdoor ice skating rink. On the walk there Abe asked me repeatedly if the ice was real -- a reasonable question because it wasn't exactly cold outside and because four years ago we went skating on plastic "ice" at a different shopping center here in northern California. It was horrible.
The ice in Union Square was real and the rink large enough but the lines wrapped around the temporary building. One line was for ticket holders -- those organized people who pre-purchased earlier that morning or online. The other sad line was for people like us -- anxious kids and exhausted parents who realized the journey through this line to buy tickets and then back through the other was a two hour ordeal. Ruby scampered up on top of the adjacent wall in her black and ivory Christmas dress while Oscar stuck to my side asking repeatedly "So are we going skating? How long is this line? When are we going to get in there?" It was the kind of anxious rapid-fire questioning that doesn't allow time for me to answer, and my answers, if not carefully crafted, can lead to higher anxiety levels. I can't think when Oscar is asking questions like that so I usually ask him to calm his body while I come up with a "plan".
The "plan" was to blow off the skating. Maybe come back over the weekend, with Daddy, with pre-purchased tickets in hand. Oscar and Ruby were on board with that plan but Abe's enthusiasm turned to a sulk and my guilt over dragging the kids all the way into the city just for dress shopping overwhelmed me. I tried to salvage the morning by suggesting we head across the street where there was rumored to be a giant gingerbread house displayed in the Westin St. Francis Hotel. The rotating "sugar castle" turned out to be so huge and so professional looking and not at all ginger-bready that none of us believed it was actually made of gingerbread until I read the sign. Twelve hundred pounds of gingerbread, 60 pounds of flour, 300 pounds of sugar, 400 hours of work...it was certainly real. When I spotted a few missing gum drops along the surrounding train tracks the kids finally believed me (and wanted a gum drop, of course.)
We spent maybe three minutes looking at that marvelous sugar castle and then started on a quest for a lunch spot. The streets were crowded with shoppers and holiday cheer seekers and it was hard to keep track of the kids. Ruby kept falling behind and I was so glad I topped her dress with her cherry red fuzzy jacket, the one with the hood and large pom pom buttons. Aside from being adorable on her it was easy to spot her little body among all the dark pants and tall boots on the sidewalks. Abe was voluntarily keeping an eye on Oscar which sometimes meant grabbing his arm and pulling him out of the way of oncoming walkers. Oscar was getting mad at Abe and Abe was frustrated with Oscar. I beckoned Abe to the side and gently told him that I could keep track of Oscar. Oscar was fine. He was keeping up ok and yes sometimes he didn't notice people walking directly into him, but he was fine.
After much more grumbling and whining we found a decent lunch spot -- a yummy mexican place where they serve warm tortillas with salsa and make guacamole right at your table. Abe's mood improved with food in his belly and I felt like I had partially salvaged the morning. After lunch we headed down to the BART station. As we went through the ticket gates we heard a train approaching and rushed down the escalator to catch it. It wasn't our train, but an eastbound train arrived on the adjacent track a few seconds later. I wasn't sure if we wanted to take that one either because I didn't know where we would have to transfer. After a second's hesitation we got on anyway. I figured that we could get off at the next stop if needed. As the doors started to close I realized that Abe had just barely jumped on the train in time, but that Oscar was still on the platform. We tried to stick our arms out to stop the doors but they closed anyway leaving me, Abe and Ruby on the train and Oscar on the platform, alone, in downtown San Francisco.
I started screaming:
"OPEN THE DOORS! OPEN THE DOORS!"
Abe and I pounded frantically on the doors and I looked desperately around the BART car for an emergency lever but I'm not sure I would have left my post at the door even if I saw one. Ruby stood up on the seat and screamed in panic. I remember being worried that if the train jolted forward she would go flying. Other passengers jumped up and started yelling and banging too. Oscar was frozen. His arms were at his sides (not flapping wildly like when he is upset) and his large brown eyes were wide with fear. Someone must have found a switch, or a lever, or a call button, because after 10 seconds (you could convince me it was two hours) the doors parted and I pulled Oscar into my arms.
The other passengers fell back into their seats with relief and I huddled at the knees of my kids who had scrunched into the two cushion seat reserved for people with disabilities. Ruby kept screaming so I held her while I talked soothingly to all of them. Oscar was still somewhat frozen, but he did say "I was really scared Mom". "Of course you were sweetie, of course you were!", I replied, and I pulled him in for another hug.
Ruby was scared too, and it took her a long time to recover. She begged me to carry her on and off the trains as we transferred in Oakland, and then off again at our station. She also awoke that night with a nightmare about being left behind on the platform. She didn't want me to leave her alone in her room.
I was scared too, but my heart didn't race, my legs didn't turn to jelly. Despite my screaming and banging I was pretty calm inside. And I can't figure out why. Was it because Oscar wasn't outwardly panicked? Was it because I just couldn't believe the train would pull away leaving him there? Did I not have time to process? Or is it because we have already been through so much that this seemed small in comparison?
I do think I knew on some deep level that he would be ok, that he wouldn't try to hold onto the train as it pulled away, like Ruby might have.
I think I knew he wouldn't get on the next train that pulled into the station, like Abe might have, but that he would stay right there waiting for me.
I think I knew that we could just go one stop and then hop the next train back. We'd be back in just a few minutes, ten tops. He's nine. He would have been fine. I keep telling myself that is why I didn't panic.
And maybe I was also in a state of disbelief that I let this this happen. I should know better.
He is nine, but he has PWS and he just doesn't react quickly in these situations. I should know better.
He gets overwhelmed in crowds and new places. I should know better.
Next time I will know better.
We are all fine now, even Ruby. And we've spent a lot of time talking about what to do if you get left behind on a BART platform. Not that it will ever ever happen again.
Thursday, December 17, 2009
Published!
This is only earthshattering because Oscar has so much trouble writing. The blank page is overwhelming and leads to lots of dawdling, yawning, and crying. When he does get started he has trouble stepping back and describing the bigger picture. His printing is tiny and he erases and erases until each word is perfect. His executive functioning delays really get in the way of organizing paragraphs and his anxiety leads to perserveration about neatness. At one point in October his two aides (job share -- not two at a time!) were joking that Oscar had finally gotten through airport security on the way back east. He was painstakingly writing about each little detail afraid to leave anything out. But at that rate he would never get to the stories he really wanted to tell.
We finally decided to take another approach. First, Ginger (one of his wonderful aides), had him dictate one of his Lake House adventures -- the day the pig escaped at the local zoo. She entered his dictation into the computer then deleted phrases so he could go back and fill in the details by himself. Brilliant! This provided a framework and got Oscar excited about writing. Next, I divided the whole trip into six separate adventures or "chapters" and typed out questions to accompany each chapter. By answering the questions Oscar was writing the story of his vacation. When we removed the questions, the chapters stood alone as separate stories in a larger piece. Oscar then went back, with our help, and expanded and added sensory details. With all of this scaffolding he fell in love with writing and developed confidence in himself as a writer.
So today he proudly sat next to his piece as parents and classmates circulated around the class reading and writing comments to the authors. About halfway through the hour he left his post to recruit more readers. A couple of times I saw him approach one of the other parents and say "So have you read my piece? It's right over there!" Lovely parents that they are, they smiled and headed towards Oscar's piece to read and leave him a comment.
I love the enthusiasm. Just love it.
Here he is, smiling proudly with Ginger.
Wednesday, December 16, 2009
Grateful
Time sure flies around the holidays...but not writing in a month has been hard. I like to put my stories down and develop them but instead they are fluttering around in my brain taking up space but losing their nuance and details. I know, I know, I should just carry that little notebook with me and jot things down but it is never satisfying enough. If I start I will want to finish and there is just so much other stuff I am supposed to be doing. "Supposed to"...a phrase I sure need less of.
In any case, as I race around town checking out all the local toy stores in between my usual medical rounds my mind keeps wandering back to a feeling of gratitude. Thanksgiving is several weeks past but still...
Every single day I'm grateful for Oscar's school (which was also Abe's and will be Ruby's), which supports and loves him, providing "just right" challenges and somehow fostering continued, even mounting, enthusiasm about school. Each morning, as he walks into the classroom, he checks the schedule on the board and has been known to jump up and down upon seeing that writer's workshop, or Native American posters, math centers or a spelling challenge is on the list for the day. The teachers, his aides, and the staff really know what they are doing and it really works for Oscar. Four years in and I still pinch myself every day. This stuff is hard for him...he's just barely (and often not) keeping up and yet he is learning and loves it.
I'm grateful for Oscar's friends who know, really know and like him. It took me a long time to believe he had friends and even when I would say it out loud there would be a big "but...." lingering on the tip of my tongue. I'm catching myself now, admitting that these kids want to play with him, are choosing to talk to him. The other day his friend Lara was supposed to come over. He hadn't seen her in 6 months because she switched schools and both kids were so excited to finally get together. The playdate ended up getting canceled (for good reasons) and both kids were devastated. Lara called on the phone instead and I could hear her enthusiastic "OSCAR!!!" booming through the phone as I stepped out of the room. The smile on Oscar's face was precious -- he said she just kept asking him question after question and he could hardly answer before she asked another, let alone ask her anything. And then there's Angie who shares Oscar love of animals and will scheme for hours with him about the zoo they're going to run when they grow up. She's patient, kind, so mature and talks to Oscar in the most matter of fact, non-alarmist way. She even orchestrated his Halloween costume, passing tips to me through her mom. I didn't know Oscar wanted to be a cow till I heard it from Angie's mom! And I can't forget Ben, his first friend at school. Ben was Oscar's de facto aide in kindergarten, before we'd convinced the school district he needed a real one. Ben is the one who nicknamed Oscar "Oskie" and now all the kids call him that, even Angie. Ben always knows what Oscar needs and can pull him into just about any social situation with his enthusiasm. Oscar knows he is safe with Ben. I think that's really it, with these kids and all the others in his class, he feels safe. Safe enough to contribute to class discussions, safe enough to do his best and not worry too much about messing up. He knows he belongs and it makes all the difference to him.
And, finally, I'm grateful for this community of bloggers and readers. I started off here a little less than a year ago and though I'm not writing nearly as much as I would like I am loving the new connections, the cyber friendships, and the wonderful writing I am reading on your sites. I am constantly moved by your stories, your struggles and your triumphs and can't believe it took me so long to get here!
So with that I'm hoping that I've ended my unintended month of silence and can get back to a more regular blogging schedule!
In any case, as I race around town checking out all the local toy stores in between my usual medical rounds my mind keeps wandering back to a feeling of gratitude. Thanksgiving is several weeks past but still...
Every single day I'm grateful for Oscar's school (which was also Abe's and will be Ruby's), which supports and loves him, providing "just right" challenges and somehow fostering continued, even mounting, enthusiasm about school. Each morning, as he walks into the classroom, he checks the schedule on the board and has been known to jump up and down upon seeing that writer's workshop, or Native American posters, math centers or a spelling challenge is on the list for the day. The teachers, his aides, and the staff really know what they are doing and it really works for Oscar. Four years in and I still pinch myself every day. This stuff is hard for him...he's just barely (and often not) keeping up and yet he is learning and loves it.
I'm grateful for Oscar's friends who know, really know and like him. It took me a long time to believe he had friends and even when I would say it out loud there would be a big "but...." lingering on the tip of my tongue. I'm catching myself now, admitting that these kids want to play with him, are choosing to talk to him. The other day his friend Lara was supposed to come over. He hadn't seen her in 6 months because she switched schools and both kids were so excited to finally get together. The playdate ended up getting canceled (for good reasons) and both kids were devastated. Lara called on the phone instead and I could hear her enthusiastic "OSCAR!!!" booming through the phone as I stepped out of the room. The smile on Oscar's face was precious -- he said she just kept asking him question after question and he could hardly answer before she asked another, let alone ask her anything. And then there's Angie who shares Oscar love of animals and will scheme for hours with him about the zoo they're going to run when they grow up. She's patient, kind, so mature and talks to Oscar in the most matter of fact, non-alarmist way. She even orchestrated his Halloween costume, passing tips to me through her mom. I didn't know Oscar wanted to be a cow till I heard it from Angie's mom! And I can't forget Ben, his first friend at school. Ben was Oscar's de facto aide in kindergarten, before we'd convinced the school district he needed a real one. Ben is the one who nicknamed Oscar "Oskie" and now all the kids call him that, even Angie. Ben always knows what Oscar needs and can pull him into just about any social situation with his enthusiasm. Oscar knows he is safe with Ben. I think that's really it, with these kids and all the others in his class, he feels safe. Safe enough to contribute to class discussions, safe enough to do his best and not worry too much about messing up. He knows he belongs and it makes all the difference to him.
And, finally, I'm grateful for this community of bloggers and readers. I started off here a little less than a year ago and though I'm not writing nearly as much as I would like I am loving the new connections, the cyber friendships, and the wonderful writing I am reading on your sites. I am constantly moved by your stories, your struggles and your triumphs and can't believe it took me so long to get here!
So with that I'm hoping that I've ended my unintended month of silence and can get back to a more regular blogging schedule!
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