Stretch. Stretch your kiddo with autism. Make sure they are stretched. Dr. Grandin came back to this point several times. She said to push them, but not too hard. She also used widen and broaden. She told the anecdote that when she was a teen her mother told her she was going to her Aunt's cattle ranch that summer. Temple said, "No way.". Her mom said she could go for a week, or for a month, but she was going. She went, she loved it, and it inspired the rest of her life. And she put that all down to being stretched by her mom.
She talked very fast, and although I took six pages of notes I did not get it all. I plan to buy more of her books, especially one on The Unwritten Rules of Social Relationships. She noted a new book called Asperger's and Self Esteem that she wrote the forward for, which profiles famous folks on the Spectrum. Einstein, of course, is on the cover. While she was very pro-autistic folks, and differing ways of being, she was also a strong advocate for training kiddos in manners and social norms. She made the case for the utility of her Fifties upbringing, and said she was saved from expulsion from school for fighting and aggression issues by finally having horseback riding taken away for two weeks. She said she switched from aggression to crying at that point in her life as an outlet for her emotions. Further on the emotion end she discussed fear. She characterized fear (and anxiety) as the primary emotion of autism, and backed that up by saying her Amygdylla is three times larger than normal. She noted that for kids, caisen free, gluten free, and/or sugar free diets, and fish oil supplements, can greatly reduce anxiety. For adults she is not opposed to low dose anti-depressants for anxiety, and wrote in detail on that in her book The Way I See It, second edition. She has a web site, grandin.com , that I plan to look up soon. Also fhautism.com, but I didn't catch if that is also her web site, or just a strongly recommended one.
Now, how do we know how big Temple's Amygdylla is? Well, she noted she has had many brain scans for scientific purposes. One large set for a US government study, and another set for the NFL! Apparently they have a large brain injury program. She showed several of her brain scans, and they were very cool. She is very lively, in a completely deadpan way. She did reveal she was not feeling well, so maybe she smiles more when not in gastric pain. She had a lot of empathy for non-verbal autistic folks, and went into detail about ways to read their non verbal cues. She also talked a fair amount about Sensory Processing issues, and that the science behind this is getting clarified and solidified. Her charts went by very fast, but she had a big one showing sensory issues as a stand alone issue, as well as an adjunct to about ten other diagnosis, including autism and ADHD. She recommended getting familiar with Google Scholar to get to the good stuff on the internet. She also made several jokes about the autism percentages in Silicon Valley.
Great ideas that popped up. Fluorescent lights often drive folks on the Spectrum batty because they flicker and an incredibly high rate. You can block them with a brimmed hat. You can also cancel them out by putting an incandescent light on a desk that has fluorescents overhead. Also tan, grey, or pastel paper to work on can make a huge difference (gonna buy a ream). The only electronic devices that do not flicker like fluorescents are lap tops and tablets (go I-pad). Colored glasses (called Irilean) or even cheap colored sun glasses can also knock out the flicker. Balancing games, and sitting on a bouncy ball can be very helpful. Do not get hung up on labels, work on the specific problems. Sounds are better tolerated when the child initiates them. NO SUDDEN SURPRISES, these cause extreme fright and tantrums. Weighted vests should be used 20 minute on and 20 minutes off. Oppositional Defiant disorder is caused by stupid math drills. Always work bottom up, teach specific examples before trying to teach concepts. Use associative links back to the persons areas of interest to promote learning. Teach how to do work other people want. There will always be uneven skill development, bold up the strength areas. Hands on activities teach practical problem solving skills. Get kiddos involved with practical skills. Clubs, hobbies, scouts, classes that really interest the student. Start building a work history and ability early on, once you find things the person likes and is good at. Show kids interesting things and places. Teach with real objects as much as possible. Use flash cards with pictures and words on the same side. Kids should be doing project and playing games with other kids where the rules and duties are negotiated by the kids, adults back off.
Yes, I know I just dumped a bunch of stuff with not much of a frame work to hang it on. Sorry about that, write or ask if you have any questions. I wanted to get most of it down while the lecture is fresh in my mind. I wish I could have hung out with Temple (if she had been feeling better), but her personality did a good job of shining through in the talk. She may be completely dead pan, almost no facial expressions, little voice inflection, and few gestures, but she made up for that lack with intelligence, wit, and heart. I will definitely be buying more of her books, and tracking down the HBO movie too. At the end of her lecture she opened up for questions abruptly, and the hall was silent. The first person to venture forth was a middle schooler on the Spectrum. He was clearly uncomfortable walking up there in front of everyone, and his bravery was heart squeezing. He saw Temple as a hero, and she treated him with great respect and attention. I don't even remember what he asked, but the whole thing gave me great hope for the future. It was quite a night, go see her if you ever get the chance.
Tuesday, February 7, 2012
Temple Part 1
So, I got in to see the sold out Temple Grandin lecture. It was sooo cool. I thought it might not be, since I have read several of her books and seen many interviews, and figured it might be old hat. No way. She was engaging and interesting, and had a ton to say. Her focus in the lecture was on Autism, but she threw in a little animal science as well. A friend asked if she is the possibility, or the exception, and I say possibility. If this sounds like Greek, let me explain. Temple Grandin is an adult with autism. She is also a Ph D, is very respected in her field, and has written almost a dozen books. She is internationally known for both Animal Science, and as an Autism advocate. Her story is fascinating, with a different family she may have ended up in an institution back in the Fifties. She did not speak until she was three, and had serious behavioral problems. As an adult she presents as extremely unique, but also down to earth and very funny with a dry sense of humor. I say she is the "possibility", because she proves that unique individuals, who do not swim in the main stream, can make it in the real world as adults.
Two of her key points for autistic individuals were: develop your strengths, and sell your work, not yourself. She also made many minor points, including being held to real world standards, developing an experience and work history, and persisting in a challenging society. My favorite line was when she was asked about options for schooling for kids on she spectrum she quipped, "Socializing with teen-agers is not a life skill I needed." She referred several times to raising kids with autism, and said that you need to "stretch" them so they experience much of the world.
There is much more to say, but my son needs his earned computer time, so I will post Part 1 now.
Two of her key points for autistic individuals were: develop your strengths, and sell your work, not yourself. She also made many minor points, including being held to real world standards, developing an experience and work history, and persisting in a challenging society. My favorite line was when she was asked about options for schooling for kids on she spectrum she quipped, "Socializing with teen-agers is not a life skill I needed." She referred several times to raising kids with autism, and said that you need to "stretch" them so they experience much of the world.
There is much more to say, but my son needs his earned computer time, so I will post Part 1 now.
Monday, December 19, 2011
Copy Cat
"Copy Cat!" I remember the taunt well from grade school. It was used with highest disdain. But really, we all start out as copy cats. It is what children do as they learn and grow, from infancy on. Think about Peek-A-Boo and Simon Says, both eternally popular children's games. For the typical kid, that is. Atypical kids, kids on the autism spectrum, kids like mine, often they can't do it. Alex would never play Peek-a-boo. Believe me, I tried. Every time he freaked out, and tried to hide or get away. This is one of those red flags. He never copied either. I would show him something to try and get him to look, to copy a simple eye gaze, and he would turn aside. If I went so far to move his head so he could see something cool, he would look down. If I tried to get him to copy a movement, it would be time for battle. It is nearly impossible to make someone copy you, this I know from experience.
Typical kids love to copy. They will copy and copy all day long. That is how kindergarten and first grade work. Of course it is not perfect for every child, or every day, but the majority of time little kids are happy and excited to try something new. Not my kid. No wonder he needed a 1:1 person to guide him. It is not that he was mean about it, it just made no sense to him and did not feel good to do. He had no "automatic copy" in his programming, and while the other kids were copying he was coming up with something else to do. Something super easy and comfie, like rocking back and forth, or spinning in circles, or flapping his hands.
Babies start copying their family very early. From eye gaze, to noises, to grabbing things, to "Soooo big". My son did none of that. He also did not show any interest in things just because someone else was interested. Interest was more of a repellent. Conditions had to be perfect for him to show interest. He needed something familiar, presented by someone super safe, in a very mellow manner. Newness was a repellent too. He did not open up a new present on his own until he was about five, maybe even six. We used to have stand-ins open presents for him on his birthday. Overall he was a real trooper through many of the rites of childhood. Things most kids grooved on he just endured. Birthday parties, organized games, pre-school, carnivals, play dates, kids activity day at the Nature Center. He did those things simply because we wanted him to, not because they were fun for him. Zero to eight is a lot of years of not copying anyone. And it makes it almost impossible to navigate the social world.
The social world when one is small is all about copying. Moving from doing your own thing next to another kid (aka Parallel Play), to actually interacting with other kids and directly copying them is a huge play milestone. That is where the social world really takes off, and it usually happens in preschool, from age 3-5. The little kids start to copy each other, and then the bigger kids, who copied the bigger kids ahead of them. This is how certain things live in the preschools and grade schools, independent of anything else. The same jokes you heard in preschool are still there, and it is not because the teachers or parents promote them, they are alive and well on their own. In grade school games live on the playground, no one is teaching the kids to act like a dog and play puppy school. They get it from older kids, or they get it from each other in a shared consciousness second grade developmental leap. And it evolves. I have watched the games the second graders are playing this year on their own get more and more complex. They copy intricate movements and rules, and then they initiate changes and modifications, present them to the group, and see if they take. If they take, then the group recopies the new trend. It is a mini-version of the fashion industry, or the gaming industry, or even scientific research. In a way we spend our whole lives in society copying what has gone before, choosing to keep what we like, and change what we don't. Copy and initiate, and copy and initiate some more. Someone who can't copy is destined to be out of the loop, and it is doubtful that they could be savvy enough to create their own loop. They just end up alone.
So, copying is big stuff. Huge. And we have been out of the loop. We, being my son and his fan base. We make the best of being alone much of the time, and he really does not seem to mind, but we have also been working the last few years to make in roads to the ability to copy, and initiations as well. I have forced him to play "copy me" games. We sent him to school to be with typical peers, and have encouraged interaction on all levels. He has been constantly prompted to use his words and express himself with the adults that guide him in life. This last summer we sent him to camp with the main purpose of helping him to learn to initiate conversation and games with young peers. He has been through four sessions of Stage Play Theater to learn the lingo of professional copying and how to be a beginning actor/ copier. And he has been getting it, a tiny bit at a time. A bright spot here, an initiated conversation there. A request for something he wants, but has a hard time asking for. An expression of an emotion without prompting. Games played with kids at school on the playground without intervention. He is the tag master. He is trying hard. He still can't ask a kid to play a game in class that involves language, or hold a kid conversation, but he is trying and learning.
And tonight, something that prompted this entire ramble about copying. As he was getting last snuggles before bed I tapped a four beat on his little butt. He laughed and copied it on the bed. I made another beat, and he copied that too. Four more and he copied them all. Then I said, "Your turn" and he initiated beats for me to copy. And more, and more. We went on for several minutes. Or maybe only two, but it felt like ten. Such a small thing, but really so huge. After years of trying, and giving up, trying again and learning how to prompt. Being aware of the deficits and trying new ways to approach them. Prompting again and prompting some more. Finally a truly spontaneous copycat session, hopefully a marker of a door that is opening without my noticing it before. Perhaps it was a Christmas Miracle.
Typical kids love to copy. They will copy and copy all day long. That is how kindergarten and first grade work. Of course it is not perfect for every child, or every day, but the majority of time little kids are happy and excited to try something new. Not my kid. No wonder he needed a 1:1 person to guide him. It is not that he was mean about it, it just made no sense to him and did not feel good to do. He had no "automatic copy" in his programming, and while the other kids were copying he was coming up with something else to do. Something super easy and comfie, like rocking back and forth, or spinning in circles, or flapping his hands.
Babies start copying their family very early. From eye gaze, to noises, to grabbing things, to "Soooo big". My son did none of that. He also did not show any interest in things just because someone else was interested. Interest was more of a repellent. Conditions had to be perfect for him to show interest. He needed something familiar, presented by someone super safe, in a very mellow manner. Newness was a repellent too. He did not open up a new present on his own until he was about five, maybe even six. We used to have stand-ins open presents for him on his birthday. Overall he was a real trooper through many of the rites of childhood. Things most kids grooved on he just endured. Birthday parties, organized games, pre-school, carnivals, play dates, kids activity day at the Nature Center. He did those things simply because we wanted him to, not because they were fun for him. Zero to eight is a lot of years of not copying anyone. And it makes it almost impossible to navigate the social world.
The social world when one is small is all about copying. Moving from doing your own thing next to another kid (aka Parallel Play), to actually interacting with other kids and directly copying them is a huge play milestone. That is where the social world really takes off, and it usually happens in preschool, from age 3-5. The little kids start to copy each other, and then the bigger kids, who copied the bigger kids ahead of them. This is how certain things live in the preschools and grade schools, independent of anything else. The same jokes you heard in preschool are still there, and it is not because the teachers or parents promote them, they are alive and well on their own. In grade school games live on the playground, no one is teaching the kids to act like a dog and play puppy school. They get it from older kids, or they get it from each other in a shared consciousness second grade developmental leap. And it evolves. I have watched the games the second graders are playing this year on their own get more and more complex. They copy intricate movements and rules, and then they initiate changes and modifications, present them to the group, and see if they take. If they take, then the group recopies the new trend. It is a mini-version of the fashion industry, or the gaming industry, or even scientific research. In a way we spend our whole lives in society copying what has gone before, choosing to keep what we like, and change what we don't. Copy and initiate, and copy and initiate some more. Someone who can't copy is destined to be out of the loop, and it is doubtful that they could be savvy enough to create their own loop. They just end up alone.
So, copying is big stuff. Huge. And we have been out of the loop. We, being my son and his fan base. We make the best of being alone much of the time, and he really does not seem to mind, but we have also been working the last few years to make in roads to the ability to copy, and initiations as well. I have forced him to play "copy me" games. We sent him to school to be with typical peers, and have encouraged interaction on all levels. He has been constantly prompted to use his words and express himself with the adults that guide him in life. This last summer we sent him to camp with the main purpose of helping him to learn to initiate conversation and games with young peers. He has been through four sessions of Stage Play Theater to learn the lingo of professional copying and how to be a beginning actor/ copier. And he has been getting it, a tiny bit at a time. A bright spot here, an initiated conversation there. A request for something he wants, but has a hard time asking for. An expression of an emotion without prompting. Games played with kids at school on the playground without intervention. He is the tag master. He is trying hard. He still can't ask a kid to play a game in class that involves language, or hold a kid conversation, but he is trying and learning.
And tonight, something that prompted this entire ramble about copying. As he was getting last snuggles before bed I tapped a four beat on his little butt. He laughed and copied it on the bed. I made another beat, and he copied that too. Four more and he copied them all. Then I said, "Your turn" and he initiated beats for me to copy. And more, and more. We went on for several minutes. Or maybe only two, but it felt like ten. Such a small thing, but really so huge. After years of trying, and giving up, trying again and learning how to prompt. Being aware of the deficits and trying new ways to approach them. Prompting again and prompting some more. Finally a truly spontaneous copycat session, hopefully a marker of a door that is opening without my noticing it before. Perhaps it was a Christmas Miracle.
Tuesday, December 13, 2011
What the Heck
What the heck should I write about in my Christmas letter? There are so many options to choose from. Should I write about everything that has happened in the last year, boring people to death and taking up four pages? Oh, that would be a problem because I didn't write a letter in '10 so I would have to do Two years and Eight pages. How about a short and funny poem that encapsulates the whole family? No, I am just no that talented. How about writing about the day I write the letter, doing a snapshot of life in our household. Hmmm, possibly but I can't be sure. Then there is the question of the tone of the letter. Light and fluffy, deep and serious, cynical and crass? Or really confuse them and do some of each. How about gratitudes? Gratitudes for hearing returned, learning continued, new jobs, or new wood stoves? What about horn tooting our collective horns. There could be business updates, a blerb on volunteer work teaching a financial class, 1000 words about North Shore Community School, or all the hard work our son has done just growing up. There could also be building project updates, pet updates, and garden updates. Oh so many options... I think this year I will go for humor. The rest can wait.
Sunday, October 30, 2011
A Winter Camping Poem
It is 6pm on a Sunday in late October and I am in my jammies. Half the clothes in the house are smoke stinky, the garage is a disaster, the car is a mess, and everyone else is already sleeping. It was a camping weekend, and I am in seventh heaven.
Two nights sleeping in a tent, with frost on the ground in the morning and well below freezing after dark. I almost choked to death on the first night, and was trapped in the tent the second night, needing to pee but with no toilet paper. At times I was frustrated, annoyed, and even pissed. I was poorly prepared, with cruddy shoes, one set of clothes, and no matches or flashlight of my own. But still, I am on a massive endorphin rush.
It could not have been the great conversation with awesome adults on Friday night around a bonfire, because I was busy losing a fight with our stove while watching Alex and the dog. It could not have been the fantastic live bluegrass band on Saturday night along with the wild party over at the old lodge, because I was too tired to make it. So I guess it was just the fact that we were camping. Camping!
But it wasn't any kind of hard core camping to account for the endorphins. We were camping at a Camp. There were actually about eight lodges on site, each with stone fireplace and welcoming vibes. There was no big push to get to camp, just a nice drive in. There was no battle for firewood, it was all provided, dry and split by the staff. I didn't even have to think about food, one of the lodges was also the dining hall complete with excellent chow. Kevin set up the tent, and broke it down too. So what provided all these marvelous endorphins? Why, even when I got home, was I so pumped that I cleaned up and even did many extra chores?
Maybe it was me, my hubbie, our kiddo, and even the dog, out and about in the outdoors. We hiked a bit, canoed a bit, hauled stuff a bit, and Alex even climbed outdoors. He made it about 16 feet off the ground, twice what he did last time. We also played some frisbee, visited the goats and the miniature horse on the grounds, and played around on the dock. The leaves were crunchy, the air was crisp, and my blood was pumping in a pleasant fashion. Yes, it may have been all that, but then again, it may have been something even more.
We were camping with a purpose. We were camping at the 13th Annual Winter Camping Symposium. We were not alone. We were not randomly "getting out". We were in the middle of an event. 40 some tents were spread across the fields and into the woods, and every one of them had a chimney sticking out of it. 160 people were pre-registered. 160 very special people. The Symposium is a gathering of the nutbags of the mid-west that like to go out and camp all winter long. The colder the better. The snowier the better. And best of all if you haul it yourself at least five miles into the wilderness on a toboggan. The tents are white- to blend with the winter landscape, and wood heated- to make it survivable. Not just survivable, but fun. Crazy fun. There is something just a little off about camping next to a wood stove in the middle of winter. It is not a pursuit for the faint of heart, but it is worthy.
It is an understated crowd that gets into this kind of thing. Everyone wears wool, the older the better. The more the outfits are mis-matched, the better. The longer you've been around, the better. And the less you have to say for yourself, the better. Lots of white hairs, and grey beards, and knowledge to pass around. This years Symposium was the biggest ever, with presenters Thursday through Sunday. You could join classes on fires and stoves, on sawing and splitting, on knife making and mitten making and winter travel. There were edible plant walks, tent tours, and good old nature hikes. Plus having fun with kids at minus 26, and kitting out your gear to run electric if you want to hit the Colorado ski slopes for $20 a night. There was a camp cook off that culminated in the Golden Spatula award, and many door prizes given away, including sweet axes, spiffy saws, and nifty wool hats.
Alex did really well. He attended last year with his dad, while I worked at home. This year we all got to attend. Kevin left on Thursday to teach classes, help organize, and get us set up too. It was a rough go on Friday, because Alex and I packed up and headed to camp after the Halloween parade and party at school. Otherwise known as chaos on a stick. I did nothing to plan ahead, so just threw together most of what we both needed for clothes and a few snacks. It is surprising how much energy that can take. By the time we arrived I was wreaked. That night, when the stove would not cooperate, Kevin was gone, and Alex was cranky I was sure the trip was a mistake. I allowed so much smoke to pour out of the stove and into the tent I was worried we might pass out. Fortunately tents just aren't that air tight, and the next morning I determined to tame that stove. By Saturday night I had it in hand, and the tent was so cozy I sent Kevin off to the music while I snuggled in with my book and watched my sleeping boy. He had hiked, and climbed, and canoed like a champ all day. He settled in easy to camp life, strung up pumpkin lights in the tent, and encouraged me in my quest to tame that stove. He had no trouble eating in the dining hall, attended a few seminars with minimal complaints, and made friends with the other kids running about. We hope that next year they will all start where they left off and make a junior nutbag pack. All they have to do is love the outdoors, want to play with fire, and have a fascination hatchets and tents. That should not be a tough sell.
So, I had a great weekend. I got to meet all the folks Kevin has been talking about all these years. He has been going to the Symposium for over six years now. Every year it landed on my work weekend, and every year it was a royal pain in the butt to schedule Alex care. Kevin is always stressed leading up to the Symposium because he sells gear there and presents as well, and then comes home and is a wreak. I had come to hate it because it meant nothing good to me. Sure, Kevin had some good stories about folks I'd barely or never met, and he always said I'd love it, but I had my doubts. Not even doubts really, I just didn't have any experience to tie things to. All that has changed. Now I have met them, eaten with them, taken their classes, and toured their tents. I am getting up on the skills, and falling for the sport. Next year I plan to present a class, and help make a real kids and family program. I think I may be hooked. We are planning to winter camp for real on December 10-11-12, and February 4-5-6, and I can barely wait.
My First Winter Camping Poem
As the last of the leaves fall from the trees and the winds begin to blow,
the temps will drop and the flakes will fly,
and I will be ready to go!
Two nights sleeping in a tent, with frost on the ground in the morning and well below freezing after dark. I almost choked to death on the first night, and was trapped in the tent the second night, needing to pee but with no toilet paper. At times I was frustrated, annoyed, and even pissed. I was poorly prepared, with cruddy shoes, one set of clothes, and no matches or flashlight of my own. But still, I am on a massive endorphin rush.
It could not have been the great conversation with awesome adults on Friday night around a bonfire, because I was busy losing a fight with our stove while watching Alex and the dog. It could not have been the fantastic live bluegrass band on Saturday night along with the wild party over at the old lodge, because I was too tired to make it. So I guess it was just the fact that we were camping. Camping!
But it wasn't any kind of hard core camping to account for the endorphins. We were camping at a Camp. There were actually about eight lodges on site, each with stone fireplace and welcoming vibes. There was no big push to get to camp, just a nice drive in. There was no battle for firewood, it was all provided, dry and split by the staff. I didn't even have to think about food, one of the lodges was also the dining hall complete with excellent chow. Kevin set up the tent, and broke it down too. So what provided all these marvelous endorphins? Why, even when I got home, was I so pumped that I cleaned up and even did many extra chores?
Maybe it was me, my hubbie, our kiddo, and even the dog, out and about in the outdoors. We hiked a bit, canoed a bit, hauled stuff a bit, and Alex even climbed outdoors. He made it about 16 feet off the ground, twice what he did last time. We also played some frisbee, visited the goats and the miniature horse on the grounds, and played around on the dock. The leaves were crunchy, the air was crisp, and my blood was pumping in a pleasant fashion. Yes, it may have been all that, but then again, it may have been something even more.
We were camping with a purpose. We were camping at the 13th Annual Winter Camping Symposium. We were not alone. We were not randomly "getting out". We were in the middle of an event. 40 some tents were spread across the fields and into the woods, and every one of them had a chimney sticking out of it. 160 people were pre-registered. 160 very special people. The Symposium is a gathering of the nutbags of the mid-west that like to go out and camp all winter long. The colder the better. The snowier the better. And best of all if you haul it yourself at least five miles into the wilderness on a toboggan. The tents are white- to blend with the winter landscape, and wood heated- to make it survivable. Not just survivable, but fun. Crazy fun. There is something just a little off about camping next to a wood stove in the middle of winter. It is not a pursuit for the faint of heart, but it is worthy.
It is an understated crowd that gets into this kind of thing. Everyone wears wool, the older the better. The more the outfits are mis-matched, the better. The longer you've been around, the better. And the less you have to say for yourself, the better. Lots of white hairs, and grey beards, and knowledge to pass around. This years Symposium was the biggest ever, with presenters Thursday through Sunday. You could join classes on fires and stoves, on sawing and splitting, on knife making and mitten making and winter travel. There were edible plant walks, tent tours, and good old nature hikes. Plus having fun with kids at minus 26, and kitting out your gear to run electric if you want to hit the Colorado ski slopes for $20 a night. There was a camp cook off that culminated in the Golden Spatula award, and many door prizes given away, including sweet axes, spiffy saws, and nifty wool hats.
Alex did really well. He attended last year with his dad, while I worked at home. This year we all got to attend. Kevin left on Thursday to teach classes, help organize, and get us set up too. It was a rough go on Friday, because Alex and I packed up and headed to camp after the Halloween parade and party at school. Otherwise known as chaos on a stick. I did nothing to plan ahead, so just threw together most of what we both needed for clothes and a few snacks. It is surprising how much energy that can take. By the time we arrived I was wreaked. That night, when the stove would not cooperate, Kevin was gone, and Alex was cranky I was sure the trip was a mistake. I allowed so much smoke to pour out of the stove and into the tent I was worried we might pass out. Fortunately tents just aren't that air tight, and the next morning I determined to tame that stove. By Saturday night I had it in hand, and the tent was so cozy I sent Kevin off to the music while I snuggled in with my book and watched my sleeping boy. He had hiked, and climbed, and canoed like a champ all day. He settled in easy to camp life, strung up pumpkin lights in the tent, and encouraged me in my quest to tame that stove. He had no trouble eating in the dining hall, attended a few seminars with minimal complaints, and made friends with the other kids running about. We hope that next year they will all start where they left off and make a junior nutbag pack. All they have to do is love the outdoors, want to play with fire, and have a fascination hatchets and tents. That should not be a tough sell.
So, I had a great weekend. I got to meet all the folks Kevin has been talking about all these years. He has been going to the Symposium for over six years now. Every year it landed on my work weekend, and every year it was a royal pain in the butt to schedule Alex care. Kevin is always stressed leading up to the Symposium because he sells gear there and presents as well, and then comes home and is a wreak. I had come to hate it because it meant nothing good to me. Sure, Kevin had some good stories about folks I'd barely or never met, and he always said I'd love it, but I had my doubts. Not even doubts really, I just didn't have any experience to tie things to. All that has changed. Now I have met them, eaten with them, taken their classes, and toured their tents. I am getting up on the skills, and falling for the sport. Next year I plan to present a class, and help make a real kids and family program. I think I may be hooked. We are planning to winter camp for real on December 10-11-12, and February 4-5-6, and I can barely wait.
My First Winter Camping Poem
As the last of the leaves fall from the trees and the winds begin to blow,
the temps will drop and the flakes will fly,
and I will be ready to go!
Tuesday, October 18, 2011
Ketchup, and Mustard
I have a new little friend. He is pokey in the halls at my new job, and always lagging in the line. I often find myself saying, Catch up, catch up! And I now know why his teacher from Kindergarten dressed for Halloween as "Ketchup... and Mustard!".
So, there have been quite a few changes in my life, and Alex's too. I jumped ship at the Hospital, swam away from my pirate compatriots, and landed on the calm island of North Shore Community School. This is my son's school, that I have been in love with since 2009. I came up with the crazy idea last spring at Alex's IEP meeting, where we hammered out the plan for his education for the next year. It was such a great meeting, with over a dozen excellent professional folk, that I walked away saying, "I gotta work here some day.". Then it hit me. There would be a special education position opening up in my son's grade. Would it work? Could I work at the same school, in the same grade? I knew they were planning to split up my little friend and my son, so there was no danger of being in the same classroom. I started a quite interview process with everyone I knew at the school to see if they thought I would be a good fit. All went well. It was a long spring and summer, wondering if I could pull it off, if I would get hired, and if I could really leave the hospital. It seems the answer all around was yes.
It was surprisingly hard to leave the hospital. Even though it was a super high stress position, with weird risks and crazy situations popping up all the time, I still had made a home there. True, the family was very dysfunctional. VERY. But I had my peeps. My survival network. And the worst thing was knowing I'd be abandoning them. The second worst was not knowing if I'd be abandoning them or not, since it took forever for the interview/ hiring process to happen. I did not know the final answer until I was on vacation, on the 15th of August. I went from nervous wreak, to elated abandoneer. And then the bubble burst.
At exactly the time I was getting hired, my husband was experiencing sudden hearing loss. He woke up right before the 15th of August with vastly reduced hearing in his left ear, with replacement ringing, buzzing, and pinging that just about drove him nuts. By the time my hiring was sinking in, we were off and running to Doctors, Audiologists, ENTs, and MRI nurses. When he wasn't having invasive procedures done, he was coping with the loss of half his hearing and the addition of all that replacement noise. Apparently the ear does not like a vacuum, and replaces lost hearing with random noise called tinnitus. Random, bizarre, maddening noise, that you eventually just get used to. The Ear, Nose, and Throat guy we trusted most said Kevin had a 20% chance of getting enough hearing back in that ear that he could possibly get a hearing aid. It was a random virus that was attacking his nerves, and this happens about 4,000 times a year in the US. The amazing end of the story is that he got back almost all of his hearing. After searching out a best practice solution, Kevin got a steroid shot into his eardrum within ten days of onset. This did the trick, and he now has loss in a 15% range. We will know in the next few months if he should go for a hearing aid for that range. For now we are simply grateful.
By the time that started to resolve I was into my last stretch at the hospital, that morphed right into my first days at North Shore Community School. I was a bit shell shocked, but happy. I was hired as a Paraprofessional, and I actually look after two kiddos on the Autism Spectrum in my boy's same grade. I made the transition pretty well. Now, six weeks later, I am finally getting a good handle on my new job. There have been some challenges, but no kids with Hep B have spit in my mouth, and I have not had to tie any children down with leather restraints. It is almost heaven.
At home we are settling in to the new routines as well. I have much less free time than before, but I don't really need recovery time from my new job, so it is all good. We have a ton more family time, and have had quite a few adventures already. This weekend is a long weekend off, and next weekend we are going "winter" camping in our wood stove tent while attending the annual Winter Camping Symposium. My next post will likely be about Alex, and what I am learning about school and Autism. I will just say that it is all good, and I am on a positive learning track. Plus his classmates are adore-able, and I am also in love with second grade in general. That is all for now, I hope everyone is having a good Fall. All the Best- Beth
So, there have been quite a few changes in my life, and Alex's too. I jumped ship at the Hospital, swam away from my pirate compatriots, and landed on the calm island of North Shore Community School. This is my son's school, that I have been in love with since 2009. I came up with the crazy idea last spring at Alex's IEP meeting, where we hammered out the plan for his education for the next year. It was such a great meeting, with over a dozen excellent professional folk, that I walked away saying, "I gotta work here some day.". Then it hit me. There would be a special education position opening up in my son's grade. Would it work? Could I work at the same school, in the same grade? I knew they were planning to split up my little friend and my son, so there was no danger of being in the same classroom. I started a quite interview process with everyone I knew at the school to see if they thought I would be a good fit. All went well. It was a long spring and summer, wondering if I could pull it off, if I would get hired, and if I could really leave the hospital. It seems the answer all around was yes.
It was surprisingly hard to leave the hospital. Even though it was a super high stress position, with weird risks and crazy situations popping up all the time, I still had made a home there. True, the family was very dysfunctional. VERY. But I had my peeps. My survival network. And the worst thing was knowing I'd be abandoning them. The second worst was not knowing if I'd be abandoning them or not, since it took forever for the interview/ hiring process to happen. I did not know the final answer until I was on vacation, on the 15th of August. I went from nervous wreak, to elated abandoneer. And then the bubble burst.
At exactly the time I was getting hired, my husband was experiencing sudden hearing loss. He woke up right before the 15th of August with vastly reduced hearing in his left ear, with replacement ringing, buzzing, and pinging that just about drove him nuts. By the time my hiring was sinking in, we were off and running to Doctors, Audiologists, ENTs, and MRI nurses. When he wasn't having invasive procedures done, he was coping with the loss of half his hearing and the addition of all that replacement noise. Apparently the ear does not like a vacuum, and replaces lost hearing with random noise called tinnitus. Random, bizarre, maddening noise, that you eventually just get used to. The Ear, Nose, and Throat guy we trusted most said Kevin had a 20% chance of getting enough hearing back in that ear that he could possibly get a hearing aid. It was a random virus that was attacking his nerves, and this happens about 4,000 times a year in the US. The amazing end of the story is that he got back almost all of his hearing. After searching out a best practice solution, Kevin got a steroid shot into his eardrum within ten days of onset. This did the trick, and he now has loss in a 15% range. We will know in the next few months if he should go for a hearing aid for that range. For now we are simply grateful.
By the time that started to resolve I was into my last stretch at the hospital, that morphed right into my first days at North Shore Community School. I was a bit shell shocked, but happy. I was hired as a Paraprofessional, and I actually look after two kiddos on the Autism Spectrum in my boy's same grade. I made the transition pretty well. Now, six weeks later, I am finally getting a good handle on my new job. There have been some challenges, but no kids with Hep B have spit in my mouth, and I have not had to tie any children down with leather restraints. It is almost heaven.
At home we are settling in to the new routines as well. I have much less free time than before, but I don't really need recovery time from my new job, so it is all good. We have a ton more family time, and have had quite a few adventures already. This weekend is a long weekend off, and next weekend we are going "winter" camping in our wood stove tent while attending the annual Winter Camping Symposium. My next post will likely be about Alex, and what I am learning about school and Autism. I will just say that it is all good, and I am on a positive learning track. Plus his classmates are adore-able, and I am also in love with second grade in general. That is all for now, I hope everyone is having a good Fall. All the Best- Beth
Tuesday, June 28, 2011
The Summer Alex Plan
I may just be deluding myself, but here is the plan for the summer for Alex. Learning to initiate socialization. Alex has learned so much over the last few years, and this is one of the final keys to a bright future. So far we have taken on: emotional ties to safe adults, emotional regulation, communication with adults, friendships with a few select peers, activities of daily living- dressing, bathing, eating, brushing teeth, zipping zippers, etc., navigating around and responding to same age peers, typical classroom participation, regular school work, and empathy and understanding emotions. Taken them on, and still working on most of them, with general great success. So much success that it is time. It is time for him to blossom into initiations.
Initiations? Sounds so clinical, but it is key to opening the whole world. Without initiation he is dependent forever on assistance. Without initiation he cannot be truly creative. We may be jumping the gun a bit, as he is not a really great copier, and copying comes first on the developmental ladder, but he's his own man so why not. He so wants to be around his friends that I can't help thinking it is time. But how to do it? He can initiate with his closest and safest friends, so how to broaden that out? Make more kids safe? With the help of Congdon Creek Summer Camps.
The camps are perfect. Geared to 3-9 year olds and based out of the preschool he attended when he was 5, they play all day long. They play, and hike, do projects, and play some more. It is a gold mine of communication opportunities. The staff is top notch, and they handle everything that comes along with style and grace. His particular teacher also has a special education degree, and was his teacher at 5, and also did her internship in his 4 year old ASD classroom. Can't get much more perfect than that. When I met with the staff before summer to talk about encouraging initiations, and also good motivation strategies and using multiple cues with him, they didn't even blink. They do all that and more, on a daily basis. Including promoting positive social skills with all the kids. Heaven.
Alex has been at camp for two weeks now. He has met up with old friends at camp, and made new friends too. The staff keeps me updated on his progress, and he is making gains every day. They are prompting and he is responding...and initiating. He does not just do his own thing anymore, and it is not a royal fight to get him to interact with the kids. He is participating fully, and developing his own style. He is king of the monkey bars, and loves to read with and to other kids. Yesterday he spent much of the morning playing "puppies" with one of the girls, barking and snuffing noses. And the other part of the morning he was discussing Kung Fu Panda 2 with one of the boys. Ahhhh, Bliss.
What you have to understand is that when Alex was 5 he could hardly be in the same room with the other kids. He maybe talked to two kids on his own all year. He had a paraprofessional with him much of the time, yet could not connect. He was very handsy with the kids, it was his only way to communicate. He would roll on one girl that he particularly liked. He always looked like a deer in headlights. The staff put in major work just for him to participate and partially work on projects. His desire to be with kids blossomed that year, but there was very little appropriate interaction. He was in his own orbit, getting closer and closer to the others, but still miles away. It is a joy and a delight to see how much he has changed, and to watch him fully participate. Yesterday he asked his dad if they can make a chocolate cake for the staff... he happily agreed.
So, there is the meat of the Alex summer. Four days a week he is at Congdon Creek Summer Camps. The rest of the time is dedicated to playing outside, camping trips, acting class, kayaking trips, play dates, reading, math, writing, stories, baking, eating good food, biking, building a rocket with his dad, and putting the coffee on in the morning. Santa Barbara may not be in the cards for this summer, but with the help of their ideas (initiations being a big one) and books, I think we will do alright.
Initiations? Sounds so clinical, but it is key to opening the whole world. Without initiation he is dependent forever on assistance. Without initiation he cannot be truly creative. We may be jumping the gun a bit, as he is not a really great copier, and copying comes first on the developmental ladder, but he's his own man so why not. He so wants to be around his friends that I can't help thinking it is time. But how to do it? He can initiate with his closest and safest friends, so how to broaden that out? Make more kids safe? With the help of Congdon Creek Summer Camps.
The camps are perfect. Geared to 3-9 year olds and based out of the preschool he attended when he was 5, they play all day long. They play, and hike, do projects, and play some more. It is a gold mine of communication opportunities. The staff is top notch, and they handle everything that comes along with style and grace. His particular teacher also has a special education degree, and was his teacher at 5, and also did her internship in his 4 year old ASD classroom. Can't get much more perfect than that. When I met with the staff before summer to talk about encouraging initiations, and also good motivation strategies and using multiple cues with him, they didn't even blink. They do all that and more, on a daily basis. Including promoting positive social skills with all the kids. Heaven.
Alex has been at camp for two weeks now. He has met up with old friends at camp, and made new friends too. The staff keeps me updated on his progress, and he is making gains every day. They are prompting and he is responding...and initiating. He does not just do his own thing anymore, and it is not a royal fight to get him to interact with the kids. He is participating fully, and developing his own style. He is king of the monkey bars, and loves to read with and to other kids. Yesterday he spent much of the morning playing "puppies" with one of the girls, barking and snuffing noses. And the other part of the morning he was discussing Kung Fu Panda 2 with one of the boys. Ahhhh, Bliss.
What you have to understand is that when Alex was 5 he could hardly be in the same room with the other kids. He maybe talked to two kids on his own all year. He had a paraprofessional with him much of the time, yet could not connect. He was very handsy with the kids, it was his only way to communicate. He would roll on one girl that he particularly liked. He always looked like a deer in headlights. The staff put in major work just for him to participate and partially work on projects. His desire to be with kids blossomed that year, but there was very little appropriate interaction. He was in his own orbit, getting closer and closer to the others, but still miles away. It is a joy and a delight to see how much he has changed, and to watch him fully participate. Yesterday he asked his dad if they can make a chocolate cake for the staff... he happily agreed.
So, there is the meat of the Alex summer. Four days a week he is at Congdon Creek Summer Camps. The rest of the time is dedicated to playing outside, camping trips, acting class, kayaking trips, play dates, reading, math, writing, stories, baking, eating good food, biking, building a rocket with his dad, and putting the coffee on in the morning. Santa Barbara may not be in the cards for this summer, but with the help of their ideas (initiations being a big one) and books, I think we will do alright.
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