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.

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.

Time, balance and living

This week I read my friend’s blog about Facebook and communication. He came to the conclusion that it actually makes us passive and will close his account soon

That made me think: could I? and more importantly, did I want to?

Apart from being an addict, I enjoy Facebook. I enjoy not always having to be active to know what happens in the lives of people I know and love. For me, it’s a time factor.

Having lived in a few countries, I’ve had to leave behind considerate amount of people I truly love. I have to say I am still glad that I have some contact with a lot of them, and I know that when it’s time to meet up I can just click on their Facebook and make arrangements. That is what happened when I went to Germany about a month ago. With some I have regular message exchange, and sometimes I am lucky to catch them online at the same time and have a chat.

I used to have pen pals when I was younger. After a while the contact would become less frequent and mostly die. But then once in a while it would start up again, and I was glad that the contact wasn’t lost forever. My friend from Grade 1 with whom I still have contact with is used to not hearing from me for a while, sometimes even years. But the strength of friendship is such that you can pick it back up again; even without being in touch for a while.

I also enjoy clicking on links to blogs and articles mostly of a professional kind. It’s quick and easy to access, so another plus point for saving time.

I have thought about time quite a lot lately. When we went to Germany, we had little time to see and spent time with my family and friends. We had hardly time to sleep and I ended up with some killer migraines, which left me with even less quality time for catching up with everybody.

It seems like time comes with a balance. If you start neglecting one area of yourself, another area will start to crumble too. The fight to find and maintain this balance seems to be the most important struggle in life. You have balance when you have time for the things you like (i.e. hobbies) and the things that are necessary but not always fun (i.e. cleaning). Of course, sometimes those areas can overlap.

However, my grade-one friend in Germany, told me that she has hired a cleaning lady. No, this friend is not made of money. She is a bio-chemistry grad student and a mom of a two-year-old. She decided that she wants to spend the limited time she has doing things she likes (i.e. spending it with her daughter) instead of cleaning. And she is very happy with her choice of maintaining balance.

When I first arrived in BC, I spent a lot of time building up my business by actively making contacts, reading articles of various topics and regularly writing on my blog. Fortunately I had some time for my passion (yoga), too. At the time my partner was still living in Winnipeg and I lived at a friend’s place, which meant I had to spend very little time maintaining our place. When my partner moved to BC, I lost some of the time I used to have to build up my business; but after a few weeks, we found a good balance.

About nine months ago we adopted a puppy and there was even less time for building up a business or even for my hobbies. Right now, I haven’t got my balance back; but I am working on it. And I feel I am seeing the silver lining on this one. My point is that our priority change with the different things life throws at you. It takes a while to find that balance again.

How does that relate to CE you might wonder? I think it does in two very different ways.

Firstly, during our training we were pushed quite hard to keep up to a certain time frame and got in trouble more than once (or maybe that was just me?) for not sticking to it or even sometimes sticking too much to it. We had to learn that pushing the tasks through is one thing, but teaching new skills was another. There were a lot of conductors who thought that quality (the teaching part) was more important then the quantity (the sole task series). At the same time, I think, if we wouldn’t have been pushed to keep to the time line and task series we wouldn’t have learned how to cram so many teaching opportunities in every minute of our session. In my professional career so far, I have been fighting with that balance. I am still fighting with it; as every member of the group(i.e. parent/spouse, participant, assistant, other conductor or professionals) will upset this balance, and it takes a while to find it again. The good news is that once you find it, you know how to more easily recreate it.

Secondly, it’s the participant and their families who most often have problems finding balance between creating learning opportunity and time to just live for all members of the family. They are inundated exercises, equipment to use during the day, therapy or sessions and doctors appointments and more. Time becomes very precious and the days are too short to do everything. To make it all worse, different professional will recommend different things. No surprise that families feel often overwhelmed.

http://benandhenrysmom.blogspot.com/2011_11_01_archive.html

I am afraid we conductors, especially in the beginning, sometimes, add to this. We recommend different uses of furniture or what to practice (which mostly looks like exercises). I am try to emphasize that most things should be practiced as part of a routine. For example when standing up from a chair, to make sure, to put weight on both legs. When playing with their children they should play with purpose, e.g. the child has to work on standing: play in a standing position. This way it comes part of what any person at that age would do anyway. And in a way it crams learning opportunities in every minute of everyday life, what has come to be known as “conductive living.”

However, some people are just looking for concrete stuff, like doing certain stretches or exercises and that’s fine. They might come around to conductive living eventually; but then again they might not. In the end, it might not be what they needed to maintain the balance of their own lives and families.

Still, in my opinion, teaching a family with a child or adult with a disability how to achieve this balance (while not killing themselves) is actually the most valuable tool we can teach.

Notes:

http://benandhenrysmom.blogspot.com/2011_11_01_archive.html

http://thegeekconductor.com/mauritius/?m=20111227

The "bloody furniture"*

Nothing better then having a long weekend to finish some projects. I have been working on one piece of CE furniture for some time and really happy that it’s nearly finished. In the process, I had a quick learning curve about sanding the chair, prime it and even paint a quite cute picture - despite my lacking drawing talent. I found that particular chair in the basement of my boyfriends grandma and she was so kind to give it to me. She was really happy that it will have some good use as it otherwise would have landed in the trash.

My partner also build me an adjustable floor ladder, which I have used with some of my clients and which has contributed to their learning process.

I would like to stress here, that in order to live a conductive lifestyle you do NOT need the CE furniture and I have made so far do with little of it. But in some instances it can serve as a great learning tool during the conductive program, to teach certain skills or break-downs off, I chose not to completely go without. On the other hand I do sometimes purposefully spend time with the client, thinking or assisting the thought process of what to use, in order to learn, apply or practice a certain skill. But as a teacher you some times just need to have your tools handy that you know will work, so you can spend time teaching what you intended.

Making this equipment actually has made me problem-solve and enter unknown territory. I learned overcoming some difficulties along the way, which made the process for me, challenging, at time quite meditative and very conductive.

*that's what Andrew Sutton used to call it. Not sure where to find the original quote.
PS. hope i can upload the pictures soon.

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.