Linked-in. Are you??? Should you???

A couple of weeks ago one of my clients suggested to me to join Linked-in. She explained to me that the is a professional network and unlike Facebook connects people professional without viewing pictures of their last camping trip.

I know this is old news to some but I so far I found it most fascinating. Not really for the fact that I made a lot of contacts (which I haven’t) but more for the discussions that are going on. I joined a couple of groups like “Neurorehabilitation” and Cerebral Palsy groups and been getting email updates about different discussions on a daily basis. Something tells me that those are the discussions we (as in the conductive community) should take part in. Getting out there and let everyone know that we have a voice and a view. And we can get out of our professional hiding-place. There is right now a discussion about Neuroplasticity, rehabilitation and Stroke. We should be in there, shouldn’t we?

Funny that those discussion look a lot like some that have been going on in the boundaries of the CE world. But maybe we still have to decide what our view is. A few of us came to the conclusion not too long ago on Andrew Sutton's facebook wall. Is that true? Quite possible, but who know without real widespread discussion.

Through Linked-in I have made a quite interesting acquaintance with a professional working in Toronto. His name is Nathan Gendelman. I commented on one of his blogs and pointed out some similarities in our thinking about learning and functional application of daily life skills. He replied to me (and allowed me kindly to quote him) “The LIFE concept does have certain common points with Peto, but it does have a lot of differences, which does not mean we can work together under one roof. [Literally as conductors do work for his company] I think if we can benefit to kids and adults with disorders - this is the greatest thing we can do. All the rest can and have to be worked out, so there is one path and all in one treatment.” After some negative experience in the past I have made with different professional, I am very excited to come across some who are looking for the exchange of views. I always knew that they are out there (as I met a couple in the past) and lately I am happy to report there have been more positive experience then negative ones. After a couple of email exchanges with Natan Gendelman, I have been asked to write about CE on the enablekids blog. That is the first time I have been asked such a thing and feel quite honored, who wouldn’t? I said I will give it a go and hope I will be able to come up with something useful.

Anyway, I am in the middle of spring camp and therefore pretty busy just being a conductor working with children and their parents - full time. I think it created a lot of learning for all (of course it includes my learning, too) and that right now reserves most of my attention.

I do hope in the future to be more out there. Discussing, writing and learning.

Notes:

http://www.linkedin.com

http://www.facebook.com/#!/permalink.php?story_fbid=152911594770591&id=1540593482

http://www.enabledkids.ca/

PROPOSED CONDUCTIVE EDUCATION SUMMER CAMPS IN BC

We are slowly or should I say quickly approaching the first Purpose Society/Moving Ahead intensive Conductive Education spring camp. It looks like we are going to be filled up close to capacity. This is very exciting indeed. There are a couple of newbie’s to CE group sessions and a couple of returnees. We only going to have a week with everybody and I hope some old skills can be refreshed as well as new things can be learned. It will be exciting to see how everything comes together and I will do my best to write about it.

We have started to look towards the summer and it already feels like it is just around the corner. Because this is the first summer camp I am going to run out here, I wanted to give people the opportunity to have their say on what we put on. Please visit my website (thanks Ben) to download the dates and details of the proposed summer camps. http://www.movingaheadcc.com/index.html (scroll down to access the form) and let me know what you think!!!

By April we should know more what is going to be feasible to run and what not. In the meantime I will be looking in different themes, activities and games to ensure that those camps are going to be full of learning opportunities combined with lots of fun.

Realistic feedback aids intelligent love!!

During my previous job as a conductor, one of my duties was to help to train the new summer camp staff (we were lucky to have a lot of returning as well as regular staff members which made things a lot easier). Usually we only had 1 to 2 days training allocated for that. During which we were trying to cover a whole lot of topics: safety of clients, centres policies, basic facilitation, awareness of movements, expectation of conductive assistants and conductors, daily routines, details of children, set-up, being motivating and more.

One point of the training was how to fast track building a relationship with the child. This is a pretty hard skill to learn but makes all the difference in a CE summer camp setting, which relies on the good help of home trained CE assistance.

We discussed that having the right kind of expectations on the kids is important to get the kids to work for them. We told them that looking at their current and former aims as well as watching the conductor and senior assistants would give them a pretty good idea on what to expect of the child. We told them that its important to keep the children safe and that we would show them how to do that without over-helping them. We told them to have fun with them especially in the in-between times of the program. We told them how important realistic feedback is to those children and their self-awareness. We also told them that those kids are great kids, but that they get a lot of praise for things they have little control over like their smile, their cuteness, their eyes and their pure existence. And they had to be really careful with that, as we did not want them to cuddle the children all day long. It was their job to teach the child, to be fair and realistic with their feedback. We wanted them to look deeper to see the child’s personality in all its facets and talk with them and to them age-appropriately. We tried to teach them about Hari's intelligent love.

One of my favourite quotes about intelligent love is the one by Chas McGuigan : “You think you are giving a child love by cuddling it all the time, but are you creating more dependence? If you just push it away a bit, encourage it, teach it to do things, you are loving it with a capital L.'”

That’s why I disagree with the statement on feedback of one of my fellow conductors. (I disagreed with some more points in her blog, which I would like to discuss some other time):

Personally I like to give positive feedback to the kids all the time, even if they couldn’t do their best. To give an example, when a child cannot perform a task perfectly, I try to encourage him by saying next time; if you try to do your best a bit more, it will work. And I also tell him he did another task well.

What she says in her blogs comes from a good place and it made me think about it all day, which is definitely a positive thing. But it seems to be very controversial to what I tried and still trying to teach my conductive assistance and parents alike over the years.

I too, would rather give positive feedback to my kids and adult client all the time, but this is not always possible or even desirable. Being positive is great but feedback is all about reflecting reality. Do not get me wrong, I do always look for something positive to point - how small that might be. But that is just it, the task don’t have to be carried out perfectly, however they needs to show that they are intentional trying to accomplish the task at hand.

Most of the time my children and adult clients do try their best, in fact they try so hard that they forget to breath and/or they trigger unwanted movements (e.g. spasticity, tremors, over movements) and more. Telling them to just try a bit harder next time and it will work is not just unhelpful but leads to a continuing the circle of failure. If we let this happen, we are failing as teachers, because we simply don’t teach. A better way is to acknowledge that they are trying hard but although give suggestions how to change what they are doing e.g. breath, relax, fix other body parts etc. . We have been taught that letting our clients fail is not an option, that if we plan for something and we ask our clients to do it, we better make sure that it is completed successful, which by the way does not mean it has to be completed perfectly.

If you are not realistic, how can you teach appropriate behavioral responses? Some children and adults with movement disorders have behavior problems partly due to inappropriate feedback in their upbringing and daily life. You have to understand that this inappropriate feedback is because they love them and want to protect them from failing.

One of the moms I worked with told me the other week that she used to praise her 17-year-old daughter for anything she does, even if she didn’t really do what she was asked to do.

That meant she had a hard time following instructions correctly as well as showing some inappropriate behavior as everything she did was “right”. She said she changed this when she saw me working with her daughter. Every time she didn’t get I would tell her nice try, but try again until she got it and then gave her lots of praise. Sometimes I gave her some hand over hand help if she didn’t get it after a couple of tries (still making her initiate it), so I would not frustrate her. But she still had to be active during the process and initiate the right movement. This way she understood what was expected of her and was even more excited when she finished it. We also worked on reinforcing good behavior when she waited for her turn, used her voice instead of pushing people to get attention. My client is very different now, she learned a lot of different skills during a very short span of time and mostly has to do that the feedback has become more appropriate. Appropriate feedback has become a vital teaching tool to boost my clients learning and is part of her conductive upbringing at home.

The children and adults I worked with, always appreciated receiving realistic feedback. This way they know they can trust you, no matter what happens. This trust is the magic ingredient that builds the interpersonal relationship between the conductor (conductive assistant) and the client. The client can trust the feedback of the conductor because they know its real and not blinded by kindness. This is how we can expect our clients to try new and sometimes rather scary tasks because they can trust us. It’s a successful way of short-cutting building a good working relationship with my clients as well as their families.

Notes:

Chas McGuigan note on intelligent love:

http://www.nurseryworld.co.uk/news/727355/Conductive-education-Flexible-friends/

conductors blog

http://playingwithangels.wordpress.com/2011/02/21/elements-of-conductive-education-part-i-the-conductor/#respond

Walking – more then just a physical skill…

About two weeks ago I started working with a new client. This young man underwent a SDR (selective dorsal rhizotomy) about three month ago. Before the operation he was able to walk with a rolator under supervision but he scissored his legs a lot and his parents felt that he would never be independent. That’s why they opted for the operation.

When I meet him two weeks ago he had a hard time sitting up straight as his core was very weak. This is why his parents decided to hire me in the first place. They explained to me that he had extensive physiotherapy since the operation and that the therapist was working on walking. In fact she tried to have him walking with his legs in perfect alignment with the help of equipment and facilitation. The parents were told that they should avoid walking until he mastered this skill. In order to support his progress, they carried him. His way of moving around was someone carrying him, which meant he had no idea how to problem solve involving his body. Further this meant he had little opportunity to get to know his new body, as it now reacts in very different way then before the operation.
Consequently he had little confidence using his body and was very scared standing on his legs. We tried a couple of steps and he looked and felt more stronger then I expected. However he needed a lot of physical support because he tended to collapsed ( a common side effect of SDR) and felt very insecure about it. He also crossed his feet a lot, which made him collapse even more.

I talked with the parents about that the skills of sitting and walking as well as problem-solving, self-esteem and confidence are very much interlink and that to get the one stronger the other need to be worked on. We also talked about that its important for their and their childs physical and emotional health to stop carrying him. And that walking in perfect alignment is also my goal but that I think he needs the chance to learn to fix his feet so he does not panic in case they do cross.

I explained to them that all rehabilitation processes I have been involved in with children who had the SDR done, it was vital that they stood on their legs as often as they could to build up strength and stamina. They told me they would like to do more with him but its hard with four other children in the house, they simply have no time.. I discussed that it is important for him to be able to move more as part of his daily routine as this is more important then exercising. So instead of carrying they should walk with him, for the short distances in the house.When he has to sit himself up on the sofa I showed him how to help him, so he can get stronger and eventually do it himself. Instead of lifting him up they should help to stand up so he has an active part in it. The family has been involved with CE before my time and it made straight away sense to them.

I suggested to get their physiotherapist to contact me so we could discuss if keeping him of his feet was really necessary for his rehabilitation. A couple of days later I had a very nice email exchange with that Physiotherapist and she was very open to my suggestions. In fact she thought they were are good ideas and she agreed with everything I said (that was definitely very refreshing to the usual professional encounters I had). So, the family stopped carrying him and felt less torn between two professional opinions. I worked with him for a bit to build up his confidence as well as getting to know his body. We explored what he could do and how to move his legs in different positions. While we were playing games he was building up his strength. We practiced to reach in and out of his gravity point. He was scared to try and I ensured him he could do it and I would be there if something goes wrong, so he was safe to try. That helped him to get over his fear. Within a short time he was able to do more and more. And with everything new he could do, his confidence level rose.

During our last session he was able to take 44 steps with his rolator with me having my hands on his hips in case he collapsed. We learned that the only times he did collapse was when his feet weren’t in alignment or he stepped on his toes. With me giving him some small verbal guidance from time to time he could fix his feet position by himself. I shared this with his parents and recommended that they start using his rolator to walk short distances.

I think the important changes that happened were that he and his family had more confidence to try and stopped being scared of moving around. It’s going to be very exciting to watch where he goes from here.

Happy Conductive Education awareness day everyone!!!

Today is the second annual CE awareness day in North America support by ACENA. I hope it is going to be a good one for CE.

ACENA’s goal was to put out one common message about CE across North America. I love this idea and the templates showed that a lot of thought and work went into those. However, I did have to take out some of the brain stuff to stay true to myself. I always have been or at least tried to be a do-as-you-preach-kind-of-person. So I guess the message was more common-ish: that CE needs more awareness and support in order to help more children and adults with movement disorders and their families.

So I tried my part to raise more awareness of CE in BC for that day. I modified the ACENA newspaper template and send it out to a couple of newspapers, TV and radio stations as well as passing on a few flyers to local schools. So far I haven’t heard anything back and I am not too surprised about it either. Making contact with the press takes time and perseverance. Someone told me last weekend its important to keep sending those information so they become more aware of you and one day it might just work out.

ACENA was encouraging to send it out to your local government to get more support from this side. Unfortunately I joined ACENA too late this year to make that happen. Next year might be a complete different story.

It’s also pretty hard with having no consistent group running at the moment. So open houses are out of the question. But with spring camp approaching quickly, we might be able to arrange something.

It has been a learning curve putting those things together too. I guess it is not quite your usual conductor stuff to put out press releases or at least it has never been for me. I feel more confident to do this at a quicker pace the next time it comes around.

I guess raising awareness of CE is a one-step at the time process and I learned to accept that I have time to make this happen slowly out here. In fact a lot of people out here have encouraged me that good things take time and the quick fixes usually don’t last. As I am not going anywhere, I have the time to see it grow. Quite a conductive process in itself.

Making connections

My stroke clients’ learning is coming along in leaps and bounds. We have been exploring movement of the affected side. When we started he had little active movement in his arms and little to none in his fingers. The first time I asked him to move his arm, he tried so hard that it looked like his head nearly popped into a million pieces, but there was no real movement in his arm.

From there we worked on me holding his arm where he could actively move it (this helps to show progress and create motivation to try) while trying to breath and relax in between. He could move it more and more. A couple of weeks later he told me about this jerking movement his arm does. He was not sure what it was. It turned out to be real active movements of his arm that he could control. This movement in his arm did not look like his movements used to but that didn’t make them less real. It made it a start of a learning curve because now we can be working on controlling this movement so it becomes smoother and more controlled.

We also worked on him regaining some movements in his fingers. He said that he had some movements during his intensive rehabilitation after the stroke but that after a while he lost it and so they worked on different aims. His fingers are naturally open and he has a hard time trying to squeeze them together to hold onto things. We worked on holding onto a piece of doweling and to lift it using the strength of both arms. While doing this I could observe that when he extended his arms that his fingers would squeeze more together. But when trying to consciously squeezing his fingers it wouldn’t work. Through my observation I knew it was possible, now my client had to figure out how to access this movement.

We elevated his arm in this position he can relax (not using any muscle) so his fingers would stay open to grab objects. I then ask him to squeeze his fingers and he tried. He kept staring at his fingers but nothing happened. I could see him getting frustrated. I told him that the movement in his fingers most likely wont come from there and he should try to squeeze with something else like his shoulder or bicep. And then it happened. His fingers close. He repeated that movement a couple of times and later his wife would tell me it was like magic.

No magic – it’s more likely he made connections. With riding the brainwave I could say that his brain created some new pathways, but realistically I don’t know what exactly went on in his brain. What I do know is that my client is learning more and more that he still has active movements on his effective side, however they do not feel or being controlled the same way. It will time to learn how to control that but the important part is that he learned it’s possible.

When parents talk…

During the last couple of days I was able to book three more initial consultations and on first impression it looks like I can really help those families making some valuable changes in the upbringing of their children.

So where did the new spiked interest come from?

Well, during the last couple of weeks I was working hard on prompting CE. I came to the conclusion right from the start, that the problem trying to build up a client base wasn’t due to lack of demand but more due to limited opportunity of getting the word out. Reaching potential clients is key to make it out here in BC. So I have been getting in touch with different support groups and I have been able to give a couple of presentations. I have met some great people, have come by some real interested but overall only limited success.

Last week after I finished the flyers for the spring break I decided to I send out more emails. I also put an information package together sending it to different child development centers, children and rehabilitations hospital. To be honest I do not expect too much back from it. I reported a while back about the negative experience other conductors have made trying to approach those places. So I was always reluctant to try. However, conductor Hajni pointed out on my blog a while back that hiding it doesn’t give CE a good reputation either. I chose therefore the passive aggressive way by informing them about it and open up communications channels if that what they wish to do so. If not, well you cannot convince everyone, even though that’s not even my real intention. I rather just want to put the word out there, that there is another option for educating and rehabilitating individuals with motor disorders. and their families. AND I am not planning on hiding it. You never know, their reaction might just surprise me.

As hard as I tried I cannot take the credit for the latest spike in interest. Parents of clients I have been working with, have done an awesome job advertising CE in a way I never could. They shared their experience and what it meant to them. Those real life statements by real people, who they know, made all the difference. And I am very thankful for that. I suppose it’s the best kind of compliment you could ever get as a professional.

In the history of CE (outside Hungary) it always has been the parents that helped CE to grow. Some exceptions apply. At the place I worked before, they run a little study on how their current clients learned about CE. The numbers were impressive. I am not sure the exact percentage but pretty much 4 out 5 people heard about it through other clients. With growing client numbers it is hardly surprising that they have to have waiting lists now.

Funny how CE tries to help families and individuals with Movement Disorders, but it is actually them who are helping us. THANK YOU.