Friday, December 25, 2009

A Great Christmas

Sam has a new adapted trike that he loves and could not get enough of this morning...AND momma Santa has given Sam and his Dad a set of foam swords for working out those frustrations. He also likes that, but most fun has been revisiting a Thomas the Train set which a neighbor gave us a few years back. In fact, here it is almost 1 PM and he hasn't opened three of his gifts because he has been having so much fun. Ah Christmas, before greed takes hold.

This year, Sam has made great advances in his understanding of Christmas. He went to a Christmas show about the Troll King trying to steal Christmas by kidnapping Santa. He held Grandma's hand when the scary Troll King was on stage and loved the singing. He loves the Christmas tree and has been pointing out all the neighborhood lights to us. We have watched Emmet Otter's Christmas approximately 500 times. He has been very excited for the past 2 nights and had difficulty staying asleep. We still have to work on the concept of giving. Maybe next year. Merry Christmas

Thursday, December 17, 2009

What to do for Tears?

Today, Sam tried to tell me something, I don't know what. He gestured, he spoke, he became progressively louder and more intense. Then tears started running down his face because I simply did not know and could not respond in the way he desired. What is one to do? Talking and hand use, (manipulating tools) are the two things that really make us human. I truly don't give a £$%£GIB###@# if he ever walks, but if he never uses his hands and mouth well, he is stuck. How can he hope to enjoy being alive? Staying in gratitude with his health or our relative wealth (we have work, we can just about pay our mortgage) is damned difficult sometimes. I feel dried up and wrung out, with most of my joy leached out at these moments. I never used to be this bitter.

Saturday, November 7, 2009

The Shoeless House and Eating Chemical Free

How different is our house and life? Well, I try to be green, keep my family safe from toxins and environmental hazards. One "easy" way to do this is the shoeless house...except...Sam cannot go shoeless because he needs his foot braces, which require some sort of shoes. I suppose I could try, every time we go in and out to not only remove my shoes, but struggle his sneakers off of his AFO'S and struggle on a slipper over them. We try to let him feel walking barefoot now and then and going without AFOS (braces) to roll on the carpet, kept clean by our shoeless ways...except...his mobility equipment (wheelchair, bronco, walker) have all rolled through whatever is on the street, park grass, sidewalk and is rolling all over our carpet. Well, you do what you can. Fortunately I have been a do your best, middle ground sort of woman for a while now.

BPA's, plastics, I try to avoid. Healthful food practices and eating is important to me--I store Sam's liquid food in glass (even though part of it comes in those forever storage boxes like rice milk does) but he has to eat out of plastic, because his hands are not strong enough to lift ceramic cups or most metal cups (we have one that works, bless e-bay). Most parents, when they feed their kids, cook, sit the kids down (or have the kids set the table) and then they all eat together as a family. We feed Sam the way one feeds a baby who cannot eat by himself. It is messy as he is still learning and whoever is doing the feeding must wait to eat until later ( it frequently takes Sam an hour to eat). Also, for a variety of reasons, Sam cant eat much of what Jason and I eat. He is at least interested in sampling it now, which is very exciting. More on Sam's diet later.

Most of our time is spent eating (feeding Sam). But when we are finished, he is not likely to pursue his own interests as he can only do a few things independently. He does go through glorious phases of playing independently for 10-15 minutes. If I sound defensive around our time, it is probably because I feel pressure from the educator front for not doing more literacy and communication tasks and programming his talker all the time and from the occupational therapy front for not practicing more mouth and hand stimulation activities and from the physical therapy front for not stretching him more and practicing with the walker and crawling. Meanwhile. Sam would like to play with the fan, thanks. Yes, it is breezy at our house. we have lots of fans.

Wednesday, September 16, 2009

Kindergarten and On-Going Life With Sam

Whew, Sam has been in Kindergarten for a few weeks now. We are pulling him out a little early each day to make sure he gets what he needs. He loves school, but is stressed out and it shows in many ways. He can pick out letters and is showing great improvement in focusing on his work. Getting him to rely less and focus less on adults is tricky. He starves himself as a protest for being singled out from his class. The first two and a half weeks, he started waking every few hours all night long. He doesn't like to eat or go to the bathroom at school. Yesterday, he was disturbed and scared of the pencil sharpener. Hopefully, this will pass quickly. I am also having a tough time adjusting.

After all the struggle about getting Sam into a charter school, I am now very happy he is in the neighborhood school. They are doing an amazing job with him, now that they see he is smart and working at grade level with his letters and numbers. I am excited to see more of that.
It seems that the current batch of teachers, speech therapists, etc., are starting from the correct idea that Sam is smart and should be treated accordingly. We are keeping him with shorter days to compensate for his not eating enough...and for how tired he gets. For a kid with spastic quadriplegia, just holding a pencil or eating takes as much effort as it would take for a regular kid to run the length of a football field. Everything takes so much longer and he has to fight his own muscles to do it.

I am looking into getting Sam a helper dog...boy are the requirements stringent. It sure makes me mad, seeing what the animals and the handlers go through to produce a canine companion/assistant dog, when folks lie about their own "assistant dogs" simply for their own convenience.

Sunday, July 26, 2009

Humility and What I (don't) Know

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 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.

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.

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.

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

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.

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.

Tuesday, June 2, 2009

Because I dont have enough to do helping my physically disabled child with his functional issues, I seek out the need for intensive advocasy . NOT

The Update: Sam was on the waiting list for Tree of Life, the Montessori charter school. He was first. He got in. Nobody told me because word came down from one EG, special education director, that first we must have a meeting to be sure his needs could be met. Funny, but nobody called me to tell me any of this. Meanwhile, his current preschool teacher advised me to sign him up for the neighborhood school, "just in case." I told her that I could not go observe that school until I finished my college semester. She went out on medical leave for a month. I happened to call the charter school to see what was happening with the waiting list and discovered that he was in-- providing this meeting I had never heard of, but was supposed to receive a call about from the special ed office, went well.

I called the special ed office. No explanation. I leave a message and don't hear anything. Then I called a special ed advocate. I repeatedly call the special ed office. Then I had a phone call saying when Sam's teacher comes back, there will be a meeting. Then no meeting, no call, but, once his teacher returned, repeated urging to sign him up for the neighborhood school. Still no contact from the Special Ed office or the charter school. I go observe the other school. I tell them I want two years of kindergarten, which is automatic in the charter school. I am told this is absolutely not possible. No word on the charter school (where it will cost more to provide Sam with services, need I add). I tell his teacher that I very much want Sam in a two year kindergarten. Inquiry made on her part. Suddenly, one of the people who told me it couldn't happen AND (via his teacher, no actual communication to me that could be quoted) the special ed director says, yes it is possible, but not guaranteed. So now, with my deal breaker ostensible resolved, I agree to put him in the neighborhood school.

Now we prep for an IEP. I had previously agreed to a date, but when I tried to change it, this was (illegally, I believe) refused. Last week I sent the Ukiah Unified Special Education Director a letter requesting an assessment of Sam's behavior (not acting out, just preventing himself from learning and focusing). I have not heard back. I have sent this letter to all of the IEP attendees along with my write-up for the IEP, emphasizing Sam's need for a better communication device. When I go to this meeting, I go armed with the knowledge that, by law, Sam can be reassessed for communication by an outside source at my request AND at the district's expense. I am on fire.

Tuesday, May 26, 2009

More caffeine please..

Yes, for the third time this week, we have been up with Sam since 2:30 am. Lack of sleep on our part does not seem to slow the press of time or negate any upcoming meetings we have (prepping for Sam's IEP, interviewing kindergarten teachers and school admins, trying to get new jobs for the office, prepping for workshops I am teaching).
Abuse is on my mind:
  1. Abuse I would like to heap on the administration for trying to prevent Sam from attending a charter school because it is inconvenient for them.
  2. Accidental abuse Sam received from a careless "caregiver" who sprayed his entire genital area with essential oil-based bug spray because she did not or would not read the label. Sam is non-verbal. How can he tell us what he is experiencing at someone else's hands?
  3. Abuse of the mainstreaming that happens with special ed kids in our school district, preventing our son from being where he needs to be. On the whole I am glad that they mainstream, HOWEVER, regular boys often need to start kindergarten late or repeat it, but seemingly that option is not open to Sam except at a charter school.
  4. Abuse of caffeine, which Super J and I must engage in to function at all this week. I think my tongue is having spasms after that last jolt.
Well, Ukiah is beautiful and the compost in my garden is growing many volunteer squash. Life goes on and, to quote my friend Scarlet, "If you think your life sucks, get some goats and keep them for three days. Then give them back. You will think your life is really great then."

Wednesday, January 28, 2009

Unbelievable that I am here in class...

For two days now, we haven't seen much sleep at our house. Last night we enjoyed a visit to the ER because our son, Salmon (who is disabled), wasn't breathing well and had a high fever. Fortunately, we were only there a short time. I must say that our local hospital/ER rocks. I have had interminable visits to ERs in other parts of the country (most notably NYC) and I have to say I feel very lucky to live here in Ukiah, not too far from emergency services. The Salmon is fine, if exceedingly whiny and only mildly feverish, now. Here I sit, then, waiting for enlightenment from our Web Design and Development Teacher, or at least for a good reason to have a blog.