Momma said...

I was talking to my mom the other day. As always, she helped me to understand something: something about CE, something about the learning process being a parent of a child with Cerebral Palsy, and something about perspective change.

My baby brother turned 18 a few weeks ago. He is an adult now by German law. I’ve know him all his life. I met him on his first day of his life, when he was battling hard to hang on there. He was so tiny and there were a lot of glass windows between us watching him, loving him. Now he is tall and lanky like my other brothers. He outgrew my mom over a year ago, who now wears high heels to support him during walking. Now, there is an ocean and nearly a whole continent between us; but I am still watching him, still loving him.

My mom has been learning how to conductively bring up my brother for over 16 years now. They live around 400k away from the German CE centre my brother has attended since he was 5 years old. He usually goes there for intensive blocks, but in between blocks it can be up to 6 months that he doesn’t get to see a conductor. However, his conductive learning never stopped: as he is encouraged to work on those skills at home.

When we talked I brought up how she mentioned before that the changes she saw in my brother from CE camps weren’t really physical changes, but more cognitive. She replied that this is true, but that she can now see how CE made a difference physically over the years. The week before she went to an orthopedic doctor because my brother complained over occasional back pain. He assured her that his spine was in great condition and that he could tell she has been working hard with him.  He also said he sees young, adults, with similar severity of CP, whose bodies are so contracted that, even with help, they have difficulties using their bodies purposefully and without pain.  Those are the times my mom gets reminded how CE has helped her to learn to not only support my brother to improve but also maintain the skills he has gained over the years at home. When he was younger it was solely about improving his skills and getting better at things. But growth, and hormonal changes really make it important to work hard mainly to maintain those. Yes, where there is CE, there is (or should be) always learning and improving, but that sometimes loses its importance when it comes to growing teenagers.

My mom talks about that conductor a lot who told her nearly ten years ago, that it is important to stick with the hard work they put in; especially when he becomes a teenager. As this is the time most families give up. It is that time that priorities change mainly because their children’s body change into an adult body, but also because the focus is more on academic achievements and what to do once they are out of school. The daily fight with different authorities and professionals simply becomes too much to handle and gets understandably avoided.   And of course other teenage troubles like hating your parents, dating, being self-conscious etc can make life even more challenging.

But it’s that time where the physical upkeep wins importance as it sets the tune for adulthood. You lose your range of movement and ability to control your limbs sufficiently when you are a teenager; it becomes a even harder battle to fight when you are an adult.

Those teenagers need activity not because they have CP but because they are human. The ”use it or loose it” rule of thumb for physical activity applies as much to them as to the rest of the teenage/young adult/human population. Exercise is supposed to be part of a healthy life-style. But what happens in reality that at this time physical activity slows way down because they become harder to handle. However, my mom also insists that she used to have more back pain when my brother was little because of the awkward bending over. Because they learned together how to support his movements, it has become easier – in a way they grew together.

They’ve had sixteen years of conductively growing together. And I think they are happily looking back on how much they learned and are happy to be able to keep going with this.

I am still watching and also learning from them.

LIFE FORCE

Just now I read a new blog entry by Susie on her blog “Conductor”, which reminded of the blog that’s been in writing in my head for a couple of weeks. http://www.susie-mallett.org/2012/04/joy-in-natural-world.html (Thanks, Susie:-))

Before I really get going, I would like to apologize in advanced about bringing more and more yoga into my blog writing. My partner and me are a bit over 2 weeks away from starting the first part of our yoga teacher training. We had to do some reading to prepare us for the tasks at hand. Naturally, it’s been part of our conversations lately and part of where my mind nowadays takes me. CE has for years been a steady occupier of my mind, which means the produce of my thinking has become quite interesting. BTW once I am done preparing for yoga, the books Peto wrote in German are next. I am curious to see, if I can find any overlap (the more I read the yoga books, the more I suspect to find that overlap).

During the last couple of weekends I have challenged myself physically more extreme then I have before. I run a ten kilometer run and hiked up and down a mountain for 12k (which took us 5h!!). I am not just telling you that to show off (and yes, a bit of ego is always in it as I am very proud of what I have done) but also to highlight the light-bulb moments that came with it. I pushed myself hard and I suspected I would spend the rest of the day resting on the couch or napping. But no, quite contrary, both those days I ended up cleaning everything on my list (my usual Sundays chores), going for more walks and more. Yes, I felt the physical tiredness of pushing myself but I also felt the mental power I gained through it. I suddenly had more energy then before and happy to be tired but still enjoying life.

I think, I gained what the yogis call “Prana”, which means in rough translation “life-force”. The yogis believe that some things steal our life-force and some give it to us. Yoga itself is considered to give us life-force, exercise is, spending happy moments doing whatever we like to do. In general, it doesn’t have to do with things that cost us energy like moving and exercising but more what brings us joy; It’s quite a bit of bliss those moments when you are exhausted e.g. playing a 24h Volleyball tournament or whatever you fancy and feeling every muscle in your body, but when you are glad you did it and be proud of your achievements.

I have seen that little twinkle of refreshed life, flashing up in my client’s eyes – and I think that’s the moment I enjoy most as a conductor. Yes, it could have been just a booth of endorphins but I choose to think there is more. There is perspective for the future and there is appreciation for the now. Without trying to sound all mushy but there is some sort of peace.

One of my biggest pet-peeve with people working/caring for children with disabilities (usually the non-verbal once) is the overused phrase: "He/she is just tired". And yes, sometimes that’s what they are and yes sometimes medication does not help, but I dare to say that quite often they are just bored. Something that would steal anyone’s “life-force” and maybe it is a reminder for us to work a bit harder on avoiding that and strengthen the things that bring life-force activity, sense of achievement, sharing enjoyment and feel connected with friends and family, feeling good about oneself and lots more. Interesting how much it sounds like CE or the things I think about planning a session.

I always remember a mother complaining to me how more alive their son was, when he got home after a six hour intensive session. That he would move around more trying to do stuff (yes, quite often it was “naughty stuff” but quite often that’s not a bad thing either).  I remember that I didn’t quite know what to say, as I was mentally and physical exhausted of trying to keep that child active throughout whole day and didn’t understand why he wasn’t feeling like I was. My instincts told me that this kind of non-tiredness is not a bad thing. And now I know that this is stuff that's most important. 

Developing as conductor means to be able to express ones ideas, thoughts and explain reasons, even instincts, better. I’m getting there slowly and I am pretty sure that I would have something important to say to this mom and expanding my teaching on a greater level.

About inspiring and being inspired

This was the second year in a row that I went to Easter Camp for stroke survivors in beautiful Squamish, BC. Last year, I was captured the friendly and vibrating atmosphere, the amazing people and conversations. This year it wasn’t any different.  We were greeted back like old friends and it didn’t feel like a whole year had passed. I remember last year, on my way back home, feeling a bit guilty about having had such a great time (again, this year wasn’t any difference). I felt this guilt as this camp really wasn’t about me. I was just there to volunteer some time, help out with a few things and introduce CE a bit. This was more about the Stroke survivors and their caregivers having a good time. I think they did.

http://turtletalk.ca/

Being inspired

This camp gave me plenty of opportunities to catch up with campers from last year and get to know new people and their unique stories. It gave me the chance to see how people have improved over the year and get to know a bit why. It also gave the chance to listen to what most people’s hopes for recovery were. I think the general consensus was that they are open for anything that might help them to make their lives easier or regain some function.

Other professionals also volunteered their time and it was great to observe them and listen to what they have to they about stroke and recovery. I think there were two major presenters I found very inspiring for different reasons.  Working independently gives me little opportunity for professional development; so I cherish every opportunity to be in the learner’s seat.

I enjoyed observing about Steady Feet, a program aiming to prevent falling, which is recognized and funded by the Ministry. For me, it was interesting to see how to approach it from a solely exercise view. The exercises she did and why she did them made sense. And I think most people enjoyed them, which I think is the most important part. It made me also appreciate the differences and why CE is more than an exercise program.

I enjoyed the talk of Dr. Yao about brain plasticity and rehabilitation options in a Question- and- Answer style. The content itself was not new to me, except how acute care for Stroke works in BC. I have heard a few things from my client, but Dr. Yao gave a wider overview. In all honesty, it was rather shocking.

I liked the way she explained everything, took her time to answer questions and had a genuine interest in what becomes of stroke survivors once they left the acute rehabilitation program.

The inspiring part of the talks and demonstrations for me was that CE is actually situated in the Zeitgeist of current neuro-rehabilitation understanding more than people might think. Our unique training and understanding does let us go the extra mile and address psycho-social concepts like motivation, cognition, attention, emotion etc. that become vital for further learning and rehabilitation. Plus, the awareness of those skills lets us adapt our teaching to teach the HOW more than the WHAT to do.

Being inspiring.

I also was scheduled to give a presentation on CE. I have had for a while now an outline on what I like people to know about CE. It’s usually pretty general and I like to put in different examples to give it some life. However, observing the other presentations; I told one of the organizers that I would teach standing up from a chair differently to people who had Strokes due to various reasons. She made me show her and then told everyone to attend my session to learn a different way. She called it a teaser to my presentation. And what a teaser it was, I had twice the people attending this time

So, after doing a general introduction about CE, I invited everyone who was interested to join me in learning to stand up (with my support if needed). I am usually really nervous about giving presentations; but once I started to teach standing up, I was on a roll. I was doing what I do best. I explained why we do things and some of the fundamental thinking about it. I kept emphasizing the teaching part and that the teaching depends on the individual learners and their current abilities. I showed examples of how we break down getting off the floor (very popular topic in that particular group). It was not the usual presentation I give, more a workshop; but people enjoyed it a lot and I had a lot of positive response to it. Being more at ease doing my thing, it sparked a bit of a “conductive glow.” With one or another that I said, I began to see that certain sparkle in their eyes- the one of hope.

However, I am very grateful that I had someone give me the right nudge in this direction and I am sure, I will use this in further upcoming presentations.

This was a great weekend. And I am looking forward to next year.

Smells like CE spirit

 

I do love when I come across articles that spell out what I was thinking for a long time and have either never seen it in written words or in written words outside some Hari books.

So one of this documents crept up on me this morning on my facebook news feed.

Self-esteem breeds Self-Determination?

Guide towards problem-solving?

Giving meaningful choices?

Create opportunities for communication?

Balance between protective and risk-taking?

High expectation?

Motivation?

Safe opportunities to practice?

Learning skills not linear?

Development of self-help and independent living skill?

Understand students starting point?

Activities in communities?

Genuine involvement with peers?

Support? Encouragement?

This all sounds so familiar. Not sure when I seen those words the last time all in one Reminds me of a project my conductor friend and me once worked on. Time to take it back up, I think.

Notes:

Relish for more then just Hotdogs:

www.nichcy.org/wp-content/uploads/docs/ta4.pdf

Here are the scripts for the audiotape (only scanned through it).

http://nichcy.org/publications/st3script

The first session

Today, I started off working with a new client. I meet her for an initial consultation over a month ago. I was excited and a bit nervous. However, I do love this time. This is where the conductive magic starts, if I do my job right. The first session usually gives me a clue how long and what it will take to gain the trust of my client and their family. It’s the start of building a relationship.

This young child is not what you would call a ‘typical’ CE child. I mean she doesn’t have the diagnosis of CP. She has a genetic defect, which not only affects her body tone (hypotonic), but also her bone structure, vision and hearing. So, I was a bit careful before meeting her and I remember warning her mother that I might have nothing or not much new to offer. We agreed to meet anyway and I am very glad we did.

This little girl just loves songs and thinks I am hilarious. Needless to say, it’s pretty easy to motivate her. So, that checked off we are working on her trusting me. She has a quite painful knee and is scared bending it. She can do it when she is playing and no one else is around. This tells me that she knows her limits and that she had bad experience with other people trying to help her. I made sure I didn’t push her and mainly verbally encouraged her to crouch down, earning her trust. It seemed work out and she tried.

I asked her to follow my movements and follow simple instructions. Her mother tried to show her hand over hand. I told her to hold of a tiny bit and see if she would attempt to follow them without hand over hand (I looked as she tried to figure out what I wanted from her) and after a little while she did quite well. I could see her mom being quite excited in the background. After the session I asked if she (the mom) had any questions. She said no and that it was pretty clear, what I wanted. She said that I worked with her daughter a lot on the next level. She feels that the therapist that knew her daughter for a while kept having those kind of expectations and that she now has to reset hers to higher ones, too.

This is not the first time I heard this. And please don’t get me wrong, I do not post this to clap myself on the shoulder (although feedback like this feels damn good). Or to cause further stress to the relationship conductors have with other professionals. It’s more to say that firstly we conductors do have something to offer to our clients and families even if it’s only to show them to step up their expectations. As well as see it as a warning to us/me to not get sucked into the current level of development, therefore always look for the next step of development (yes, in case you wonder it’s Vykotskii).

Anyway, it looks like we had a great start to do some conductive magic with this family.