Boost Camp, a month of five hours of physical therapy called Conductive Education, which we bracket with two hours of driving, is over for '09. Sam works sooooo hard. As do I and my mom, who comes down to help so I can take an hour or so off during the day. The other kids (eight of them this year) are also physically handicapped. Most of them have cerebral palsy, some also have seizures, some have genetic disorders. Some are exceedingly functional but have some trouble walking or balancing. Some have much more pervasive issues. The kids, most of whom spend a lot of time watching able bodied people succeed and have fun, get to watch people like themselves work, play and succeed. It is an amazing month with inspiring parents, grandparents, caregivers, Conductors and high school or junior high volunteers cheering on our kids.
This year we saw a monumental change in two of the girls. One in particular brought me such a sense of humility. Her grandma always awes me because she has sole care of this teenager who does not speak, seizes, uses a feeding tube, and has a myriad of other things going on. Her mother is not alive. This girl, I thought last year, was not very present or alert. Her tongue thrusting and self injurious behavior led me to believe she didn't notice or care about much.
Boy was I wrong. This year she is alight with interest in the world. She has started eating. At 14 years old, after tube feeding for over a decade she wants to and is eating. She follows directions and responds appropriately to questions and directions. She uses a switch to communicate. She is less self-injurious (perhaps because she is less frustrated, who knows). Often it looks as if these kids are not looking or listening because their heads are twisted around, their eyes are not focused on what we are pointing to. Nonetheless, all the kids at Boost, respond by reaching and getting what we are talking about (a switch, a communication device, a ring or bar).
All in all, I am humbled as I realize that I know nothing about what is happening with these non-verbal kids who are stuck inside themselves. They have whole worlds which they don't get to share. One of the other moms and one of the conductors both told me that often these kids play inside their heads. What a difference from the attitudes of educators I have encountered who imply that these kids are simply lacking intelligence. In fact, one past implied that since Sam looked back and forth quickly between his choices, he simply could not communicate. I truly wish Sam's teachers will be more in line with the Conductive Education philosophy.
Sunday, July 26, 2009
Sunday, July 12, 2009
Mommy Dearest...
During Boost Camp (a conductive education camp where Sam first learned to balance and sit on a bench with no strapping up, to sit cross legged on the floor, and where he said his first sentence, "I don't like this."), Sam complains a lot. He likes Boost. He knows it helps him and he is excited to go every day. He enjoys his friends and helpers and shouts merrily when we arrive, after an hour's drive, to the camp. (Doyle Park Elementary School, gods bless them for lending it to Boost).
It helps him to see that other kids with disabilities have a hard time doing things. Even so, they still work very hard to sit, stand, walk, play, eat and talk. Even though he is proud and enjoys the outcome, it is insanely hard for him. Imagine if your body fought you when you tried to take a drink of water. If the cup weighed eighty pounds and your throat was swollen almost shut and you were nauseous but very thirsty, so you had to drink. You might give up and let the cards fall where they will--especially if all around you healthy people were drinking out of light cups and saying, 'come on you can do it.' But look--here are three or four others with swollen throats and heavy cups--you can try together to slake your thirst. Now it is doable. Sam likes it, likes feeling normal, but there is great wailing and, literally, gnashing of teeth during the tasks.
Generally, I keep the pressure on even when he is crying, yelling, and saying, "ANGRY! ANGRY! ANGRY!" (His enunciation of angry is amazingly good. He also learned instantly to use his communication device to say "I'm Mad!" appropriately). He is proud when he finishes his tasks, despite complaints. So when Sam yelled and complained walking with only the handles, but not the arm troughs, on his walker, I said, "I know it is different from what you are used to, but you have to do it. Stand up and quit moaning. Straighten your arms." I made him walk from the car to the door of the classroom. Imagine my horror when I went to take off the handles and discovered that the left side was bloody by the screws. He had scratched up his arm and it hurt. He wasn't only complaining about a new harder task. The walker gashed his arm. I am going to hell. Oops. I am already there.
It helps him to see that other kids with disabilities have a hard time doing things. Even so, they still work very hard to sit, stand, walk, play, eat and talk. Even though he is proud and enjoys the outcome, it is insanely hard for him. Imagine if your body fought you when you tried to take a drink of water. If the cup weighed eighty pounds and your throat was swollen almost shut and you were nauseous but very thirsty, so you had to drink. You might give up and let the cards fall where they will--especially if all around you healthy people were drinking out of light cups and saying, 'come on you can do it.' But look--here are three or four others with swollen throats and heavy cups--you can try together to slake your thirst. Now it is doable. Sam likes it, likes feeling normal, but there is great wailing and, literally, gnashing of teeth during the tasks.
Generally, I keep the pressure on even when he is crying, yelling, and saying, "ANGRY! ANGRY! ANGRY!" (His enunciation of angry is amazingly good. He also learned instantly to use his communication device to say "I'm Mad!" appropriately). He is proud when he finishes his tasks, despite complaints. So when Sam yelled and complained walking with only the handles, but not the arm troughs, on his walker, I said, "I know it is different from what you are used to, but you have to do it. Stand up and quit moaning. Straighten your arms." I made him walk from the car to the door of the classroom. Imagine my horror when I went to take off the handles and discovered that the left side was bloody by the screws. He had scratched up his arm and it hurt. He wasn't only complaining about a new harder task. The walker gashed his arm. I am going to hell. Oops. I am already there.
Friday, June 26, 2009
Actually Happy? What Does It Take?
When people meet Sam, they usually say, "He's so happy!" and sometimes, "Is he always this happy?" Mostly parents of young children don't ask the second one. --Only people without kids or whose kids are older and have therefore experienced the merciful opium of time which blocks out memories of temper tantrums, etc., ask about always being happy. Often there is a tone of wonder when people talk about Sam's happiness.
Sam expects people to like him. After all, for the most part, he expects to like them. This expectation of friendliness and fun, creates the happiness which people see when they look at Sam. Expectation of happiness, in general, creates happiness. The opposite is also true.
The other day in my yoga class, one of my students, when asked how he was doing, replied that, as per usual, he was mediocre. The student who had greeted him with, "how are you doing?" said, "Well, I am sure you will feel better after class." The student's reply was along the lines of, "probably not." At the time, I didn't say anything. I simply thought about the people in my life who are and are not (to my perception) happy.
Many who are not have the expectation that somebody (the man, PG&E, the Republicans, their parents, the FBI, the New World Order, global warming, the devil, you name it) is trying to do them down.
Many who are happy notice and appreciate the little things (the birds, walking into town, their affectionate family members or pets, water, fresh air, delicious food, a good book) and allow themselves to enjoy them. Oh yes, they expect to enjoy their lives, their connections and focus on that. Just noticing.
Expect to hear more about this in class. See you on the mat.
Sam expects people to like him. After all, for the most part, he expects to like them. This expectation of friendliness and fun, creates the happiness which people see when they look at Sam. Expectation of happiness, in general, creates happiness. The opposite is also true.
The other day in my yoga class, one of my students, when asked how he was doing, replied that, as per usual, he was mediocre. The student who had greeted him with, "how are you doing?" said, "Well, I am sure you will feel better after class." The student's reply was along the lines of, "probably not." At the time, I didn't say anything. I simply thought about the people in my life who are and are not (to my perception) happy.
Many who are not have the expectation that somebody (the man, PG&E, the Republicans, their parents, the FBI, the New World Order, global warming, the devil, you name it) is trying to do them down.
Many who are happy notice and appreciate the little things (the birds, walking into town, their affectionate family members or pets, water, fresh air, delicious food, a good book) and allow themselves to enjoy them. Oh yes, they expect to enjoy their lives, their connections and focus on that. Just noticing.
Expect to hear more about this in class. See you on the mat.
Friday, June 19, 2009
Being Different
Yesterday I had to have a talk with Sam about how it feels to be different.
There is a boy, Cadence, whom Sam has always admired for his charm, wildness and agility. Sam usually loves to hang out with him in the pool or at the park because the boy is full of fun and loud about it. Lately, when Sam sees Cadence, he turns in on himself and makes himself small. Sometimes he even wants to leave wherever we are if Cadence is there. I hasten to add that Cadence has never been anything but nice to Sam. He has not ever criticized or hurt Sam. Sam simply feels his difference.
I have seen this interaction with another child and her daddy. Tessa is fairly adventurous and her dad likes Sam. He often comes up to Sam to "pound it out" or get a high five. Sam likes him, and probably Tessa as well. Despite this liking, as soon as Tessa's dad says, "Sam, watch Tessa," and invites Tessa to do some acrobatic trick, Sam tries to leave. I say tries because if he is not in his walker or wearing his swimmies, he relies on me or another adult for locomotion.
In other instances, Sam has been on the brink of speaking and stopped himself from making a sound.
He has a great book by Todd Parr called, "It's OK to Be Different." Unfortunately, this book doesn't talk about how it feels to compare oneself and come up wanting. I suppose I will try to write a book about this for Sam, since nothing else is available. In the meanwhile, now that my heart is wrung out, I suppose I will hang it out to dry.
There is a boy, Cadence, whom Sam has always admired for his charm, wildness and agility. Sam usually loves to hang out with him in the pool or at the park because the boy is full of fun and loud about it. Lately, when Sam sees Cadence, he turns in on himself and makes himself small. Sometimes he even wants to leave wherever we are if Cadence is there. I hasten to add that Cadence has never been anything but nice to Sam. He has not ever criticized or hurt Sam. Sam simply feels his difference.
I have seen this interaction with another child and her daddy. Tessa is fairly adventurous and her dad likes Sam. He often comes up to Sam to "pound it out" or get a high five. Sam likes him, and probably Tessa as well. Despite this liking, as soon as Tessa's dad says, "Sam, watch Tessa," and invites Tessa to do some acrobatic trick, Sam tries to leave. I say tries because if he is not in his walker or wearing his swimmies, he relies on me or another adult for locomotion.
In other instances, Sam has been on the brink of speaking and stopped himself from making a sound.
He has a great book by Todd Parr called, "It's OK to Be Different." Unfortunately, this book doesn't talk about how it feels to compare oneself and come up wanting. I suppose I will try to write a book about this for Sam, since nothing else is available. In the meanwhile, now that my heart is wrung out, I suppose I will hang it out to dry.
Saturday, June 13, 2009
That Workshop...Argh
Well. Preparing for my workshop on developing a personal yoga practise (why we do what we do in class) and teaching it were so entirely different that there might have been two different workshops.
In fact, there were at least two, many more if one counts all the workshops in my head and those which I prepared for. I devised this fairly esoteric workshop delving into the Yoga Sutras and Ayurveda. How I hoped to address this in two hours is anybody's mystery. As part of the workshop, I had worked out what poses addressed various doshas and ailments. Of course everybody knows their doshas, their environments' doshas, the doshas of their life stages and how all of these fall out of balance. We all do, right?
Also, there was the workshop about taking care of your body while recovering from illness or injury. Then I prepared for the workshop about breath practise or pranayama. And of course the workshop about meditation, diet and what to do at home. In two hours. Goddess. Gods. What was I thinking? Squishing all of this together into two hours was kind of crazy.
Obviously, next time I need to narrow my focus significantly or teach an ongoing class that is 2-3 hours long.
It was great seeing all the different levels of practitioners who wanted to deepen or re-enter their practise. I only wish I could go on longer or teach an ongoing workshop of this nature. Plus, I rediscovered one of my favorite quotes: "To the yogi, death is like a sauce that makes life savory." -Iyengar
In fact, there were at least two, many more if one counts all the workshops in my head and those which I prepared for. I devised this fairly esoteric workshop delving into the Yoga Sutras and Ayurveda. How I hoped to address this in two hours is anybody's mystery. As part of the workshop, I had worked out what poses addressed various doshas and ailments. Of course everybody knows their doshas, their environments' doshas, the doshas of their life stages and how all of these fall out of balance. We all do, right?
Also, there was the workshop about taking care of your body while recovering from illness or injury. Then I prepared for the workshop about breath practise or pranayama. And of course the workshop about meditation, diet and what to do at home. In two hours. Goddess. Gods. What was I thinking? Squishing all of this together into two hours was kind of crazy.
Obviously, next time I need to narrow my focus significantly or teach an ongoing class that is 2-3 hours long.
It was great seeing all the different levels of practitioners who wanted to deepen or re-enter their practise. I only wish I could go on longer or teach an ongoing workshop of this nature. Plus, I rediscovered one of my favorite quotes: "To the yogi, death is like a sauce that makes life savory." -Iyengar
Saturday, June 6, 2009
Yogini Vision (as opposed to television?)
Whew, I have to take a break from angsting over all those IEP issues. Today's post is about yoga, specifically teaching yoga.
It is so interesting to me to watch people (particularly women) shift from Tadasana (mountain pose, standing hands by one's sides) to standing with hands in Anjali Mudra (prayer pose at the heart).
Starting with Tadasana: Many of us stand with hips thrust forward, chest collapsed ala sullen, yet cool, teenager. Also popular, collapsing the solar plexus, center of the will. What does this body language say? 'Here I am, all sex, no heart.' Or all sex, no will ~both popular attitudes in today's world, certainly. In relation to the chakras, it pushes the earth, fire and water chakras to the fore. In relation to physiology, these stances make it very heard to breathe. Some of this is learned when we are kids, trying not to take up too much space or trying not to say what we really want for fear of being ridiculed or failing. I am not saying that all people with poor posture have these issues. Rather, I think that many of us once had these issues, held our bodies this way and developed a habit. Yoga can free us of this postural habit and the shallow breating that usually accompanies it. Neurolinguistic Programming (NLP, sure but where did that come from?) and Somatics tell us that once you hold your body differently, you hold your mind differently almost automatically.
Quite a lot of people do stand upright without collapsing their solar plexus or heart centers. Some of these people, once they pur their hands into Anjali Mudra or prayer pose, collapse their hearts and or solar plexus...almost as if the concept of praying rather than lifting the heart and spirit, causes it to sink. Or maybe, praying is like being good and that sinks one's heart--a concept that makes one question "good," eh. Ideally one's connection with Spirit, with Divinity should make one's heart soar and strenghten rather than weaken the will. Well, that is the Mighty Eye's vision, anyway.
It is so interesting to me to watch people (particularly women) shift from Tadasana (mountain pose, standing hands by one's sides) to standing with hands in Anjali Mudra (prayer pose at the heart).
Starting with Tadasana: Many of us stand with hips thrust forward, chest collapsed ala sullen, yet cool, teenager. Also popular, collapsing the solar plexus, center of the will. What does this body language say? 'Here I am, all sex, no heart.' Or all sex, no will ~both popular attitudes in today's world, certainly. In relation to the chakras, it pushes the earth, fire and water chakras to the fore. In relation to physiology, these stances make it very heard to breathe. Some of this is learned when we are kids, trying not to take up too much space or trying not to say what we really want for fear of being ridiculed or failing. I am not saying that all people with poor posture have these issues. Rather, I think that many of us once had these issues, held our bodies this way and developed a habit. Yoga can free us of this postural habit and the shallow breating that usually accompanies it. Neurolinguistic Programming (NLP, sure but where did that come from?) and Somatics tell us that once you hold your body differently, you hold your mind differently almost automatically.
Quite a lot of people do stand upright without collapsing their solar plexus or heart centers. Some of these people, once they pur their hands into Anjali Mudra or prayer pose, collapse their hearts and or solar plexus...almost as if the concept of praying rather than lifting the heart and spirit, causes it to sink. Or maybe, praying is like being good and that sinks one's heart--a concept that makes one question "good," eh. Ideally one's connection with Spirit, with Divinity should make one's heart soar and strenghten rather than weaken the will. Well, that is the Mighty Eye's vision, anyway.
Thursday, June 4, 2009
one step forward 2 steps back...
Bear in mind, Sam loves his school, likes all his teachers and therapists and is well treated there. We are grateful for all he is learning. And I ask you--with on ly 4 choices for communication which must be reprogrammed every time how can my son develop communication skills? So far as I know, no signing is encouraged at school. He is allowed four expressive statements from his talker (you try communicating much of anything like that, especially if you need help to ambulate) My son who needs help to do every little thing and wants to do more each day as he grows bored with previous accomplishments and old games(actually quite happy aobut that part) is stymied at every turn because of communication. and then the pictures for his 4 talker which I made (3 sheets that say approximagtely the same thing as I had to remake them 3 times) are kept at school.
Sam is actively discouraged from communication because the talker does not say what he wants. It is faster and easier for people around him to understand his grunts and whining so this behavior is rewarded, while other forms of communication are discouraged via boredom and frustration. This will not bee solved by sending them home more frequently or by having two sets. Sam needs a more adequate device.
I was told that once sam needs a more complicated device, he will get it. He needs one now: one that is easy to transport and has at least 8 choices. The way the 4 talker was chosen (I requested a device & proved via one that I cobbled together that he would use it regularly) was not a fair evaluation. Only one device of the augmentive specialist's choosing was given a trial while none of my suggestions were given a trial. I was repeatedly pressured to agree with this device. The device was purchased. Now he uses it, but it is inadequate for his needs. in order to progress, he needs a more complex, easily transportable device immediately. If the team does not feel this is true, he must be evaluated by an outside team (as I requested at a previous IEP--this was illegally denied.).
Funny, how interesting: I finally sent a note asking about three sheets I made for his 4 talker over the course of the past two weeks which were never sent home. I immediately received a call about a piece of his equipment that did not go back to school today. It has gone back to school every day this week, except today. hmm.
Sam is actively discouraged from communication because the talker does not say what he wants. It is faster and easier for people around him to understand his grunts and whining so this behavior is rewarded, while other forms of communication are discouraged via boredom and frustration. This will not bee solved by sending them home more frequently or by having two sets. Sam needs a more adequate device.
I was told that once sam needs a more complicated device, he will get it. He needs one now: one that is easy to transport and has at least 8 choices. The way the 4 talker was chosen (I requested a device & proved via one that I cobbled together that he would use it regularly) was not a fair evaluation. Only one device of the augmentive specialist's choosing was given a trial while none of my suggestions were given a trial. I was repeatedly pressured to agree with this device. The device was purchased. Now he uses it, but it is inadequate for his needs. in order to progress, he needs a more complex, easily transportable device immediately. If the team does not feel this is true, he must be evaluated by an outside team (as I requested at a previous IEP--this was illegally denied.).
Funny, how interesting: I finally sent a note asking about three sheets I made for his 4 talker over the course of the past two weeks which were never sent home. I immediately received a call about a piece of his equipment that did not go back to school today. It has gone back to school every day this week, except today. hmm.
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