Last week I submitted an essay to the Children's Hospital Notes and Words Essay Contest and I just found out it was chosen as a semi-finalist, one of 18 essays out of the 220 submitted. I am ecstatic!
As part of the semi-finalist round essays are posted to the Notes and Words facebook page where readers can vote. Here is the link to my essay. Gone by Mary Hill If you like it, please LIKE it, and pass it along for others to read as well. The more people that read it the better!
As you will see, it is an intense essay. I struggled with submitting, and now circulating, an essay on such a difficult topic. However, I also feel strongly that people experience a wide range of feelings around having a child/sibling with a disability and while it might not resonate with everyone I do hope that it will help some, perhaps even a sibling or two. I did change the names of my kids, and I did get permission (multiple times) from my oldest to share his sentiments.
Thank you all, in advance, for reading, and for LIKE(ing) and sharing if you like!
Wednesday, March 28, 2012
Friday, March 16, 2012
Exsanguination
Exsanguination -- why, you are wondering, is this word spinning around in my head? Exsanguination is the bonus word that Oscar correctly spelled on today's spelling test. Really.
I stopped by school this morning to drop off Ruby's car seat and ran into Oscar's teacher. Her huge smile forecasted good news -- I'm not sure what I was expecting but it wasn't this. My brow furrowed in disbelief as several thoughts raced through my mind.
He must have seen the word before.
Nope.
Someone must have told him.
Nope.
Did he cheat?
No way. (I feel horrible that this even crossed my mind)
I looked over at Oscar's aide who nodded, smiling, confirming. By now the director of the school had joined the conversation and the marveling. She, like all of Oscar's teachers, has been celebrating his successes with us since kindergarten. (In second grade, when Oscar was reading his poems aloud at the class publishing party, the poems he had written himself, her eyes were wetter than mine.)
As we discussed what exsanguination actually meant, Oscar bounced over and said, "let me see if I can do it again."
Without hesitating he rattled off the letters -- E-X-S-A-N-G-U-I-N-A-T-I-O-N.
I must have still looked surprised because when he finished he said confidently, "It's easy Mom. You just go syllable by syllable."
Syllable by syllable. Little by little. Step by step. He's so right. It's how he has gotten here. It's how he learned to walk. It's how he learned to read, and ride a bike, and draw a giraffe. It's how he'll always move forward. It's how he'll always accomplish his next goal.
I used to be so impatient, anxious even, waiting for Oscar to reach the next milestone. When he was an infant I compared him to my memories of a precocious Abraham who took his first steps at 8 months. When he was a toddler, I'd pull out the developmental tests and check his progress against skills for his age group. I'd argue to the early intervention therapist that he could stack those 1" cubes if he had better trunk strength and fine motor control and therefore he shouldn't be penalized on his cognitive scores. I'd talk incessantly with other parents about what their child could or could not do. I'd lie awake at night thinking about ways to help him along.
At some point though I stopped charting and calculating and wondering and worrying. I still supported him. I still taught people how to break down tasks into smaller chunks so he wouldn't get overwhelmed and could feel a sense of accomplishment each step of the way. I still took him to all his therapies and advocated fiercely for his placement at this amazing school.
But mostly I relaxed into the knowledge that he would eventually get to that next place and that it wasn't a race. Mostly I just started believing in Oscar.
It seems corny now but the very first book we read to Oscar when he was a floppy infant in the NICU struggling to stay awake long enough to feed was The Little Engine That Could. There weren't too many books lying around the NICU but this little dog-eared copy was a staple and we read it no fewer than a dozen times in his two week stay. We read it to ourselves as much as to him. We read it to glean hope that he'd someday be able to eat, to walk, to talk -- things we didn't count on in those early pre-diagnosis days. Oscar knows this, and sometimes when we express surprise at his latest accomplishment he reminds us that he is the little engine that could.
He reminds us to believe.
I stopped by school this morning to drop off Ruby's car seat and ran into Oscar's teacher. Her huge smile forecasted good news -- I'm not sure what I was expecting but it wasn't this. My brow furrowed in disbelief as several thoughts raced through my mind.
He must have seen the word before.
Nope.
Someone must have told him.
Nope.
Did he cheat?
No way. (I feel horrible that this even crossed my mind)
I looked over at Oscar's aide who nodded, smiling, confirming. By now the director of the school had joined the conversation and the marveling. She, like all of Oscar's teachers, has been celebrating his successes with us since kindergarten. (In second grade, when Oscar was reading his poems aloud at the class publishing party, the poems he had written himself, her eyes were wetter than mine.)
As we discussed what exsanguination actually meant, Oscar bounced over and said, "let me see if I can do it again."
Without hesitating he rattled off the letters -- E-X-S-A-N-G-U-I-N-A-T-I-O-N.
I must have still looked surprised because when he finished he said confidently, "It's easy Mom. You just go syllable by syllable."
Syllable by syllable. Little by little. Step by step. He's so right. It's how he has gotten here. It's how he learned to walk. It's how he learned to read, and ride a bike, and draw a giraffe. It's how he'll always move forward. It's how he'll always accomplish his next goal.
I used to be so impatient, anxious even, waiting for Oscar to reach the next milestone. When he was an infant I compared him to my memories of a precocious Abraham who took his first steps at 8 months. When he was a toddler, I'd pull out the developmental tests and check his progress against skills for his age group. I'd argue to the early intervention therapist that he could stack those 1" cubes if he had better trunk strength and fine motor control and therefore he shouldn't be penalized on his cognitive scores. I'd talk incessantly with other parents about what their child could or could not do. I'd lie awake at night thinking about ways to help him along.
At some point though I stopped charting and calculating and wondering and worrying. I still supported him. I still taught people how to break down tasks into smaller chunks so he wouldn't get overwhelmed and could feel a sense of accomplishment each step of the way. I still took him to all his therapies and advocated fiercely for his placement at this amazing school.
But mostly I relaxed into the knowledge that he would eventually get to that next place and that it wasn't a race. Mostly I just started believing in Oscar.
It seems corny now but the very first book we read to Oscar when he was a floppy infant in the NICU struggling to stay awake long enough to feed was The Little Engine That Could. There weren't too many books lying around the NICU but this little dog-eared copy was a staple and we read it no fewer than a dozen times in his two week stay. We read it to ourselves as much as to him. We read it to glean hope that he'd someday be able to eat, to walk, to talk -- things we didn't count on in those early pre-diagnosis days. Oscar knows this, and sometimes when we express surprise at his latest accomplishment he reminds us that he is the little engine that could.
He reminds us to believe.
Monday, March 5, 2012
It doesn't get old
I'm not going to tell you about our tantrum-filled weekend with new records set for screeching and duration or my impatience with the slow processing or, for that matter, that just after I posted last we got lice (yes, me too) but that I still managed, thanks to my amazing inlaws, to get away to a fantastic writer's retreat with Kate Hopper and then when I got back Ruby got a stomach bug and now my hands are cracked and bleeding from over-washing and sanitizing and I'm still not letting anyone use the bathroom Ruby is using. Nope, someday I'll tell you about all that, maybe, but for now I'm taking a class that is going to help me recognize and enjoy some of the small pleasures in my life rather than always fearing the next tragedy (today's back to back pre-dawn earthquakes did not help) or always focusing on what needs to get done or be fixed. And so I'm going to tell you this instead:
Last Friday, like every weekday at a minute or so past three, I punched in the five digit code on the school's keypad, yanked down on the handle and pulled open the heavy gate. Parents had already gathered loosely to chat and wait for their children to appear. The younger kids often stand at the top of the schoolyard with a teacher and then come bounding down the slightly inclined blacktop when their parent appears. The older kids walk a little more slowly, self-conscious pre-teens already, and slide up next to their parents rather than rushing into their arms. Ruby does neither -- she marches or skips confidently towards me and, as she nears, bellows out a request for a playdate with one friend or another. She balks when I say no, and pushes her flowered lunchbox, her purple fuzzy jacket and her backback into my arms before disappearing once again to climb on the bike rack or giggle with a friend.
Oscar always arrives several minutes later, slowly descending the steps one at a time from the upper classrooms with the other stragglers from the 4th and 5th grades. He peers down at the crowd from under the hood of his brown fleece jacket. It takes him a while to process the scene, to find me in the crowd, but his face lights up when he does. He always has something to report and starts talking without introducing the topic first so that I spend the first few seconds trying to guess what he's referring to. Or he'll forget to notice that I'm already speaking to someone, usually his teacher or aide, and start his story anyway.
On Friday though, Ruby stayed home sick so I was standing alone at the bottom of the steps when Oscar appeared. His backpack was slung over his right shoulder and in his left he clutched a red three-ring binder containing the script of the play his 5th grade class will perform in May. With a huge smile he reported that they had just had their first blocking rehearsal. He and his classmates moved around on a makeshift stage and delivered their lines for the first time. To my surprise he was beaming. He was excited.
It doesn't get old....this reveling in things Oscar can do, in things Oscar wants to do. Things that years ago I'd never imagined possible.
These past couple of days I've been listening to the recording of December's triennial IEP so that I can be sure to get all the nuggets of brilliance included in the IEP document notes. Yesterday I heard his private OT and his neuropsychologist sum it all up beautifully -- because the space-time demands are fewer at his school and because structure and calm are embedded into the environment and because he has excellent food security and because he has formed caring relationships with his peers and teachers, and because his teachers have the patience and training and flexibility to meet his needs, his progress in the five or so years that each has known him is nothing short of astounding. His OT said that he is one of the most earnest kids she has ever worked with, and that if Oscar is withdrawing from an activity then you immediately have to look at the sensory demands being placed on him. After all, said the neurospychologist, he is the kid who begged his math teacher to teach him to multiply big numbers. (She did.) After all, chimed in the OT, he is the kid that insisted on learning to touch type with proper finger placement, not just two fingers. (He does.*)
And now the kid who five years ago sat in the lap of his kindergarten teacher sobbing with his hands covering his ears whenever there was clapping, the kid who refused to join his class in singing a song at an all-school community meeting, the kid who hid under the table whenever a challenging task was presented, is excited to perform in a play in front of the entire school and their parents and grandparents and friends. He's excited to learn his lines and remember where to be on stage. He's bounce-all-the-way-to-the-car-and-talk-about-the-play-the-whole-way-home excited.
Nope, this reveling in all he can do, in all that his wonderful school has supported him in doing for nearly six years now, will never get old.
*(We just got his Certificate of Completion from the Mavis Beacon typing program. Accuracy -- 96%. Words per minute -- 4. I love it.)
Last Friday, like every weekday at a minute or so past three, I punched in the five digit code on the school's keypad, yanked down on the handle and pulled open the heavy gate. Parents had already gathered loosely to chat and wait for their children to appear. The younger kids often stand at the top of the schoolyard with a teacher and then come bounding down the slightly inclined blacktop when their parent appears. The older kids walk a little more slowly, self-conscious pre-teens already, and slide up next to their parents rather than rushing into their arms. Ruby does neither -- she marches or skips confidently towards me and, as she nears, bellows out a request for a playdate with one friend or another. She balks when I say no, and pushes her flowered lunchbox, her purple fuzzy jacket and her backback into my arms before disappearing once again to climb on the bike rack or giggle with a friend.
Oscar always arrives several minutes later, slowly descending the steps one at a time from the upper classrooms with the other stragglers from the 4th and 5th grades. He peers down at the crowd from under the hood of his brown fleece jacket. It takes him a while to process the scene, to find me in the crowd, but his face lights up when he does. He always has something to report and starts talking without introducing the topic first so that I spend the first few seconds trying to guess what he's referring to. Or he'll forget to notice that I'm already speaking to someone, usually his teacher or aide, and start his story anyway.
On Friday though, Ruby stayed home sick so I was standing alone at the bottom of the steps when Oscar appeared. His backpack was slung over his right shoulder and in his left he clutched a red three-ring binder containing the script of the play his 5th grade class will perform in May. With a huge smile he reported that they had just had their first blocking rehearsal. He and his classmates moved around on a makeshift stage and delivered their lines for the first time. To my surprise he was beaming. He was excited.
It doesn't get old....this reveling in things Oscar can do, in things Oscar wants to do. Things that years ago I'd never imagined possible.
These past couple of days I've been listening to the recording of December's triennial IEP so that I can be sure to get all the nuggets of brilliance included in the IEP document notes. Yesterday I heard his private OT and his neuropsychologist sum it all up beautifully -- because the space-time demands are fewer at his school and because structure and calm are embedded into the environment and because he has excellent food security and because he has formed caring relationships with his peers and teachers, and because his teachers have the patience and training and flexibility to meet his needs, his progress in the five or so years that each has known him is nothing short of astounding. His OT said that he is one of the most earnest kids she has ever worked with, and that if Oscar is withdrawing from an activity then you immediately have to look at the sensory demands being placed on him. After all, said the neurospychologist, he is the kid who begged his math teacher to teach him to multiply big numbers. (She did.) After all, chimed in the OT, he is the kid that insisted on learning to touch type with proper finger placement, not just two fingers. (He does.*)
And now the kid who five years ago sat in the lap of his kindergarten teacher sobbing with his hands covering his ears whenever there was clapping, the kid who refused to join his class in singing a song at an all-school community meeting, the kid who hid under the table whenever a challenging task was presented, is excited to perform in a play in front of the entire school and their parents and grandparents and friends. He's excited to learn his lines and remember where to be on stage. He's bounce-all-the-way-to-the-car-and-talk-about-the-play-the-whole-way-home excited.
Nope, this reveling in all he can do, in all that his wonderful school has supported him in doing for nearly six years now, will never get old.
*(We just got his Certificate of Completion from the Mavis Beacon typing program. Accuracy -- 96%. Words per minute -- 4. I love it.)
Tuesday, February 14, 2012
Drip, Drip
I was so good at posting here at the beginning of January, but now it's been almost a month again without a post. I gotta blame the leaks.
I discovered the first leak one rainy night down in our basement garage in the space under the front steps. Water pouring down both interior walls of the wedge-shaped space. Water soaking the scrap wood and pooling in the sleds we stored there. Water dripping from the boards above onto my head where I stood peering around with my headlamp on. Water seeping into the garage.
And, on the other side of the basement, there was the mysterious flood on the laundry room floor. The rag rug I had placed in front of the washer was soaked through and the bands of sand on the newly painted green concrete marked the water's path down the slightly sloped floor toward the front wall where it just seeped out through the foundation into the yard. That leak, it turns out, was from a blocked sewer drain that backed up into the laundry drain and resulted in a visit from a water restoration company to deal with the sewage contamination. Our local plumber sized up the situation and recommended a new sewer lateral to replace the 80-some year clay pipe sewer. (Did I mention that it took two of these mysterious floods before we realized it was sewage and took proper precautions?)
And then last Friday night, just as friends were arriving to share a drink before whisking Abe off to the opening of a new baseball facility, I found a puddle on the kitchen floor. The new hardwood kitchen floor. I opened the cabinet under the sink to find the cabinet and all its contents soaked. The new faucet is apparently leaking quite a bit. I wonder how long that's been going on?
I didn't write much about it here, but we moved out of our house (the dilapidated castle) for two months this fall to renovate. The house looks so much better -- we finally tiled in the shower walls and added a fan in the bathroom to help with condensation and mold on the bedroom windows. We replaced the pink sink and pink ceramic tile floor in the kitchen and added a soothing green granite counter top. We painted the entire house inside and out and refinished the hardwood floors. We planed the interior doors so they actually close, we fixed a leak in the roof, we replaced the insulation in the attic, and swapped out light fixtures.
We took care of ten years of deferred maintenance -- all the projects we should have been taking care of all along but were so busy tending to Oscar's needs (and the other two kids of course) that we just let it all go.
And now we are leaking again.
I'd probably would have been better able to cope with all of this if I wasn't already dealing with my own leaky gut. I was diagnosed late fall (hello anxiety and sleep problems and digestion issues and headaches) and have been following a rather restrictive diet. No gluten, no dairy, no yeast or any fermented food, no sugar, no potatoes or berries or eggplant or eggs or cinnamon or mace or mint or bananas. There's more but I can't remember it all. I'm spending a lot of time grocery shopping and cooking and there's just so little time left for everything else.
So, it's been a month of leaks. Meanwhile I have a lot of posts stored up in my brain. Perhaps they too will leak out onto my blog in the near future!
I discovered the first leak one rainy night down in our basement garage in the space under the front steps. Water pouring down both interior walls of the wedge-shaped space. Water soaking the scrap wood and pooling in the sleds we stored there. Water dripping from the boards above onto my head where I stood peering around with my headlamp on. Water seeping into the garage.
And, on the other side of the basement, there was the mysterious flood on the laundry room floor. The rag rug I had placed in front of the washer was soaked through and the bands of sand on the newly painted green concrete marked the water's path down the slightly sloped floor toward the front wall where it just seeped out through the foundation into the yard. That leak, it turns out, was from a blocked sewer drain that backed up into the laundry drain and resulted in a visit from a water restoration company to deal with the sewage contamination. Our local plumber sized up the situation and recommended a new sewer lateral to replace the 80-some year clay pipe sewer. (Did I mention that it took two of these mysterious floods before we realized it was sewage and took proper precautions?)
And then last Friday night, just as friends were arriving to share a drink before whisking Abe off to the opening of a new baseball facility, I found a puddle on the kitchen floor. The new hardwood kitchen floor. I opened the cabinet under the sink to find the cabinet and all its contents soaked. The new faucet is apparently leaking quite a bit. I wonder how long that's been going on?
I didn't write much about it here, but we moved out of our house (the dilapidated castle) for two months this fall to renovate. The house looks so much better -- we finally tiled in the shower walls and added a fan in the bathroom to help with condensation and mold on the bedroom windows. We replaced the pink sink and pink ceramic tile floor in the kitchen and added a soothing green granite counter top. We painted the entire house inside and out and refinished the hardwood floors. We planed the interior doors so they actually close, we fixed a leak in the roof, we replaced the insulation in the attic, and swapped out light fixtures.
We took care of ten years of deferred maintenance -- all the projects we should have been taking care of all along but were so busy tending to Oscar's needs (and the other two kids of course) that we just let it all go.
And now we are leaking again.
I'd probably would have been better able to cope with all of this if I wasn't already dealing with my own leaky gut. I was diagnosed late fall (hello anxiety and sleep problems and digestion issues and headaches) and have been following a rather restrictive diet. No gluten, no dairy, no yeast or any fermented food, no sugar, no potatoes or berries or eggplant or eggs or cinnamon or mace or mint or bananas. There's more but I can't remember it all. I'm spending a lot of time grocery shopping and cooking and there's just so little time left for everything else.
So, it's been a month of leaks. Meanwhile I have a lot of posts stored up in my brain. Perhaps they too will leak out onto my blog in the near future!
Tuesday, January 17, 2012
A Glorious Day
This weekend we hiked (some of us reluctantly, the 49ers were playing!) 1.7 miles to this dark sand crescent beach in the Marin Headlands. Frothy waves crashed against the cliffs creating mini waterfalls down the lowest portion of the rock face. Blue skies, warm sun and still air had us peeling off the three extra layers any savvy northern Californian wears to the beach. We've been here before, in all seasons, and never have we had more perfect weather.
Oscar was one of the reluctant ones but he came around when I reminded him that he could hunt for semi-precious stones among the dark pebbles.
I gasped when I reached the crack. I had no idea how narrow the space. How steep and crumbly the walls. I started climbing, and my feet slid on the rocks that covered the trail, rocks that had been pulled out of the dirt walls by previous climbers. I climbed faster - slipping, stepping - up the deep and twisty ravine, calling up on decades-old rock climbing skills to grasp tiny rocks poking out of the walls to hoist myself along.
Of course they were fine. But definitely not the best idea to let them hike alone.
We stayed a while just breathing it in.
When I returned to the beach Oscar was eager to show me that he'd found more green and white stones among the black pebbles.
The sun edged slowly toward the horizon and still we stayed. Oscar, who usually begs to leave the beach after an hour, was happy on this rare windless day. I rested my head against a rock and closed my eyes and let the warm sun wash over my face.
We considered staying on through sunset and hiking back to the car in the dark. (If only we'd brought our headlamps and an extra snack.)
Our glorious day was made even more glorious by an uneventful walk back. No complaining, no whining, no requests for food. Just five hikers, holding hands, chatting, and tossing the football back and forth along the way.
Saturday, January 14, 2012
Another Conversation with Oscar about PWS
Every few months Oscar and I seem to find ourselves in one of those conversations about Prader-Willi syndrome and how it affects his life. I've largely protected him from the scary information and try to frame any limitations he might encounter in terms of what he can do, not what he cannot.
This morning, as he cozied up in front of the heater in his jammies, I should have reminded him to get dressed for school but instead I casually asked if he'd be interested in a sleep-away camp for kids with Prader-Willi at Camp Harmon this summer. I think that conversation would have gone fine if I had not, in the very same breath, asked his 7 year old sister if she was interested in circus camp. Oops.
Oscar's heard all about circus camp from our babysitters who are counselors there. They've told him about the friendships and the art projects and the circus activities and the big show. But what he remembers most about circus camp, I finally cajoled him into telling me, is that at circus camp you get ice cream as a reward for doing the dishes. Every night. Based on that alone he has decided that circus camp is for him.
I tried to tell him that I didn't see him being interested in learning to walk a tight rope or riding a unicycle or swinging from a trapeze high off the ground.
I tried to tell him that I know he likes art projects, but that he also likes animals and basketball and that I was thinking about a camp that had those types of activities.
I tried to tell him that the Camp Harmon was like the family camp we go to every summer except that he gets to go with friends.
With tears brimming and lips quivering he asked why he had to go to a camp with all the "Prader-Willi people".
(I spent the next several minutes lecturing him on people-first language and not calling himself or letting others call him a "Prader-Willi" while he stared at me with a stunned look on his face.)
And then I answered his question.
"Because, sweetie, at Camp Harmon they understand Prader-Willi syndrome and they know how to keep you safe. Even if you went to circus camp you wouldn't be able to have ice cream every night as a reward for doing the dishes. Eating all of that ice cream would be dangerous and make you sick."
He formed a little circle with his index finger and thumb and said he'd be ok with only having a tiny bit of ice cream every night. "I wouldn't need a lot, Mom, I swear."
He calmed down only a little when I reminded him that so many of the kids he looks forward to seeing at our fundraising walks, and support group meetings, and even yesterday at a middle school he was visiting have Prader-Willi syndrome and that many of them attend this camp. He smiled when I reminded him that Emilie and David and Owen would probably be there. And he looked maybe a little relieved when I told him he didn't have to go to camp at all -- that I was only giving him the option.
I'd like to say this conversation ended elegantly but it didn't. When I finally stopped talking sadness overwhelmed him again and the tears flowed harder. So I tracked down his iPod, found his favorite Green Day album and plonked the headphones on his ears. And I hoped that the abrupt transition to something he loves would distract him enough so he could get ready for school. (It did.)
We'll revisit this conversation again soon I'm sure. As Oscar heads toward adolescence he will undoubtedly notice more differences between himself and his typical peers. He will have more questions. There will be more tears.
I am hopeful, though, that the opportunities he will have in life will always be meaningful and satisfying, even if not exactly the same as his typical peers. I will insist.
This morning, as he cozied up in front of the heater in his jammies, I should have reminded him to get dressed for school but instead I casually asked if he'd be interested in a sleep-away camp for kids with Prader-Willi at Camp Harmon this summer. I think that conversation would have gone fine if I had not, in the very same breath, asked his 7 year old sister if she was interested in circus camp. Oops.
Oscar's heard all about circus camp from our babysitters who are counselors there. They've told him about the friendships and the art projects and the circus activities and the big show. But what he remembers most about circus camp, I finally cajoled him into telling me, is that at circus camp you get ice cream as a reward for doing the dishes. Every night. Based on that alone he has decided that circus camp is for him.
I tried to tell him that I didn't see him being interested in learning to walk a tight rope or riding a unicycle or swinging from a trapeze high off the ground.
I tried to tell him that I know he likes art projects, but that he also likes animals and basketball and that I was thinking about a camp that had those types of activities.
I tried to tell him that the Camp Harmon was like the family camp we go to every summer except that he gets to go with friends.
With tears brimming and lips quivering he asked why he had to go to a camp with all the "Prader-Willi people".
(I spent the next several minutes lecturing him on people-first language and not calling himself or letting others call him a "Prader-Willi" while he stared at me with a stunned look on his face.)
And then I answered his question.
"Because, sweetie, at Camp Harmon they understand Prader-Willi syndrome and they know how to keep you safe. Even if you went to circus camp you wouldn't be able to have ice cream every night as a reward for doing the dishes. Eating all of that ice cream would be dangerous and make you sick."
He formed a little circle with his index finger and thumb and said he'd be ok with only having a tiny bit of ice cream every night. "I wouldn't need a lot, Mom, I swear."
He calmed down only a little when I reminded him that so many of the kids he looks forward to seeing at our fundraising walks, and support group meetings, and even yesterday at a middle school he was visiting have Prader-Willi syndrome and that many of them attend this camp. He smiled when I reminded him that Emilie and David and Owen would probably be there. And he looked maybe a little relieved when I told him he didn't have to go to camp at all -- that I was only giving him the option.
I'd like to say this conversation ended elegantly but it didn't. When I finally stopped talking sadness overwhelmed him again and the tears flowed harder. So I tracked down his iPod, found his favorite Green Day album and plonked the headphones on his ears. And I hoped that the abrupt transition to something he loves would distract him enough so he could get ready for school. (It did.)
We'll revisit this conversation again soon I'm sure. As Oscar heads toward adolescence he will undoubtedly notice more differences between himself and his typical peers. He will have more questions. There will be more tears.
I am hopeful, though, that the opportunities he will have in life will always be meaningful and satisfying, even if not exactly the same as his typical peers. I will insist.
Wednesday, January 4, 2012
Wordly Wise
Of course, the day after I posted on Hopeful Parents about Oscar's recent amazing flexibility, maturity, and participation, it all fell apart. He fell apart. His processing speed slowed. His anxiety skyrocketed. He started asking a zillion questions in his high-pitched "emergency voice" and became increasingly inflexible about everything from socks to family outings. By 9am on Sunday he'd already had two big tantrums and Paul and I were scheming about forcing a morning nap.
We never know what causes these swings in behavior and function. Maybe it was the interminable plane ride home from the east coast on Thursday. Or the jet lag. Or anticipation of school starting back up. Or post-holiday blues.
So I was surprised to hear that he actually had a good first day back to school. And even more surprised when the first thing he did today when he awoke from his nap was get started on his vocabulary homework. He even forgot about snack.
O's class uses a 5th grade Wordly Wise vocabulary and reading comprehension workbook. It's a stretch for him, but he's keeping up far better than we'd all anticipated. Usually the first couple of exercises with the new set of words are challenging. Until the words are ingrained in his brain (darn working memory issues!) he has a tendency to get overwhelmed and shut down. I've been working with him on developing strategies -- like trying the words one by one until he finds the one that fits -- before overwhelm strikes.
This afternoon, though, he pulled out his workbook, grabbed a pencil, squatted on the living room floor and banged out all ten questions in his Wordly Wise in what seemed like five minutes flat. He didn't ask me any questions. And he got them all (mostly) right.
And then he immediately asked if he could have his screen time.
(When oh when am I going to remember just how motivating screen time is and use it more strategically?)
We never know what causes these swings in behavior and function. Maybe it was the interminable plane ride home from the east coast on Thursday. Or the jet lag. Or anticipation of school starting back up. Or post-holiday blues.
So I was surprised to hear that he actually had a good first day back to school. And even more surprised when the first thing he did today when he awoke from his nap was get started on his vocabulary homework. He even forgot about snack.
O's class uses a 5th grade Wordly Wise vocabulary and reading comprehension workbook. It's a stretch for him, but he's keeping up far better than we'd all anticipated. Usually the first couple of exercises with the new set of words are challenging. Until the words are ingrained in his brain (darn working memory issues!) he has a tendency to get overwhelmed and shut down. I've been working with him on developing strategies -- like trying the words one by one until he finds the one that fits -- before overwhelm strikes.
This afternoon, though, he pulled out his workbook, grabbed a pencil, squatted on the living room floor and banged out all ten questions in his Wordly Wise in what seemed like five minutes flat. He didn't ask me any questions. And he got them all (mostly) right.
And then he immediately asked if he could have his screen time.
(When oh when am I going to remember just how motivating screen time is and use it more strategically?)
Sunday, January 1, 2012
Happy New Year!
It's been years since I sent out a holiday card. We used to have such fun creating newsletters with pictures, crosswords, jokes, and articles. One year Abe wrote a funny piece about Ruby's toddler-isms and Oscar dictated all the facts he knew about giraffes. I hope someday we'll rediscover our creativity, but until then I'm considering it a victory that I slapped this together today (with the help of Shutterfly of course).
I am hopeful about 2012 -- I am promising myself yoga, long walks up the staircases that slice through the blocks in our neighborhood, read-alouds, card games and bike rides with the kids, time for writing and creative pursuits, and (please, oh, please) a whole lot less anxiety.
Happy Happy New Year to all!
Wednesday, December 28, 2011
The Other Shoe (Hopeful Parents)
It's been months since I posted here, but I hope to be back soon with a really long update. In short though, my mother died in July and I just didn't feel up to posting in the months preceding and following her passing. And then, in a fit of madness, we decided to finally take care of all the deferred maintenance on our beloved "dilapidated castle". This fall we packed up all of our belongings, moved out, renovated our house, then moved back in. It's one of the crazier things we've done. We are still stepping around boxes and can't find the hardware for the bedroom blinds, but life goes on.
In the meantime, I did finally post over at Hopeful Parents. (Thankfully they hadn't changed my login or revoked my privileges in my absence!)
In the meantime, I did finally post over at Hopeful Parents. (Thankfully they hadn't changed my login or revoked my privileges in my absence!)
Tuesday, May 3, 2011
A Rare Tuesday
It's a rare rare Tuesday -- no baseball game for Abe tonight. No dinner with friends. No meetings about teen alcohol prevention, no science fairs or school concerts. No soccer practice or music rehearsal. And so we are home. Oscar is napping and I'm making dinner for the first time in over a week.
Ruby made fruit salad, cubing apples and oranges and bisecting tiny frozen blueberries till her fingers turned blue. She topped the salad with sliced almonds and divided it into two bowls - one for her and one for Abe. They sat at the breakfast table and chatted and made silly sounds while I scrubbed carrots for the stew.
Then Abe tuned the little toy guitar he got when he was two and handed it to Ruby. He picked up his own guitar and they strummed together, Abe stopping every couple minutes to reposition Ruby's still chubby fingers on the frets. And now they are playing a board game. Abe is explaining the rules to her in a fake British accent and she is giggling and hopping like a frog in the orange jumper that she's wearing with purple leggings and wool socks.
I love Abe's baseball games. I love the evening sun on my face and the cheering and chatting with friends in the stands. I love watching Ruby invent ball games with other siblings or wheel around on her scooter in the adjacent basketball court. I love how Oscar cheers for his favorite players on both teams, watches the umpires and keeps track of the count. I love rooting for Abe (who is playing with a cast on his wrist and somehow still contributing) and seeing the energy and excitement he brings to the game. I love it all.
But I do love a quiet afternoon at home, too.
Ruby made fruit salad, cubing apples and oranges and bisecting tiny frozen blueberries till her fingers turned blue. She topped the salad with sliced almonds and divided it into two bowls - one for her and one for Abe. They sat at the breakfast table and chatted and made silly sounds while I scrubbed carrots for the stew.
Then Abe tuned the little toy guitar he got when he was two and handed it to Ruby. He picked up his own guitar and they strummed together, Abe stopping every couple minutes to reposition Ruby's still chubby fingers on the frets. And now they are playing a board game. Abe is explaining the rules to her in a fake British accent and she is giggling and hopping like a frog in the orange jumper that she's wearing with purple leggings and wool socks.
I love Abe's baseball games. I love the evening sun on my face and the cheering and chatting with friends in the stands. I love watching Ruby invent ball games with other siblings or wheel around on her scooter in the adjacent basketball court. I love how Oscar cheers for his favorite players on both teams, watches the umpires and keeps track of the count. I love rooting for Abe (who is playing with a cast on his wrist and somehow still contributing) and seeing the energy and excitement he brings to the game. I love it all.
But I do love a quiet afternoon at home, too.
Subscribe to:
Posts (Atom)