Cipöfüzö, Schnürsenkel - shoe laces, in Hungarian and German

I am facinated by the use of the internet. It allows different people with common interests to communicate easily. A Conductor in Germany named Susie Mallet saw my blog and linked me to her website called the Conductor. It just so happened she was working in Germany with children who are learning to tie their shoes. She mentioned Cassie on her blog. Susie has emailed me some wonderful information I can look up on CE and she recommended I post my comment that I made to her on my blog today.

My comment read as follows:

Glad you are interested in reading a mother's perspective on CE. I am not sure I understand the point you are making about my perception of the individual program working between two lines. I have never heard the term "pedagogy" before so this may be why I dont understand your point. Anyway, it is fascinating to see who is interested in what I write. My blog is a journal for my daughter, myself and our family and friends who are interested in my daughters progress here at ability camp. It is also a way to say thanks for the donations raised to support this very expensive camp. I take the pictures of Cassie if the conductors allow me to. I post them if the parents allow me to. There is only a short amount of time that the parents are allowed into the program. In the past Cassie has done extensive amounts of physiotherapy at Chedoke Children's Developmental Rehabillitation program in Hamilton Ontario. She used a Pony walker, regular walker, treadmill, gait training and other methods to learn to ambulate. I only have the Canadian physiotherapy perspective to compare CE with. There seems to be alot of conflicting views. The conductors dont support some of the types of therapy that we feel have been very useful for Cassie's growth and development. After five weeks I plan to return to Cassie's rehab program that is covered by Ontario Health Insurance Plan but hope to take home some ideas tht we can continue to work on. Cassie's well being is important to her dad and I. Cassie has had Botox (into thumb and various leg muscles), Serial Casting recently before coming to camp. She has used a left AFO and a SMO on her right since 6 months old. She pretty much wears them from morning until night and often wears her AFO and a knee immobilizer at night. I have learned to stretch her and I have learned to mobilize her calcaneous. (To assist with her problem of walking on the outside boarder of her foot.) It is a evolving process where things look great, she grows and things look worse. We have invested huge amounts of time in various therapies for her hand. Focus on Function study, Contraint induced movement therapy, Therapuetic horse back riding programs and she loves Ballet and swimming. I believe children need to be well rounded and too much therapy is not really what I promote. School, day care, church, theatre camp and girl guides have allowed Cassie to participate and shine and develop well along with her peers. We do not participate in any active therapy programs in the summer, Instead we enjoy fun at our trailer where Cassie is free to play, swim and bike ride with her friends and sister. We give her only small reminders to correct things or use a weak hand during the entire summer. Every child needs this free time and we find it invaluable to her growth and development. Interestingly, I have many pictures of Cassie at her after school physio clinic and she is doing the entire progam with her AFO's on. This is very different from her program here at Ability camp.The conductors are working hard to educate me on the dangers of Botox and AFO's as well they do not seem to support orthopedic surgery although they have not commented to me on the surgery Cassie needs. I am still not sure of what is best and may take the best of what I can remember from each type of therapy. I am conflicted as to what are the best options for my girl and I build trust with different professionals and guide my decisions based on what I think is best. I continue to put her AFO back on her left foot after her class here. Cassie loves to run alot and runs better with her left foot supported. I have a terrific orthotist who invests a lot of time and a great deal of skill watching Cassie ambulate. Constant adjustments are made to her AFO's. I still may consider allowing a surgeon to correct her equinovarus foot deformity if the stars align and Cassie works hard and continues to improve her muscle tone problems. I would love to prevent the need for surgery however. It is a continual balancing act. The planned surgery is club foot surgery and the timing is cruical and her specialist sees her every six months and we work together. Here at Ability camp the CE conductors are presenting me with other options which is empowering and inportant to me. Yesterday Cassie saw a chiropractor who may be able to assist with her leg length discrepancy and twisted foot. The lack of written material here at camp makes it slower for me to grasp and remember what is said. Yesterday Cassie walked down the hall in orhopedic shoes that are too big (borrowed and put on her by conductors) Although I dont like the look of her foot I do not say anything as I respect what they are doing and came here to learn their ideas. Cassie's left foot is rolling over badly as I watched her run down the hall back to her CE class. I am interested in reading alot more information before I give up on some of the medically managed ways of controlling Cassies spasticity and poor muscle tone. I dont believe the amount of therapy she gets at home would ever allow her to be without AFO's without a huge committment on my part. Until Cassie is old enough to make her own decisions I must balance out what I feel is best for her. I am a busy RN, mother and wife. I am just learning CE and yes I relate it to exercise or physiotherapy because it is what I am familiar with. Cassie invested huge amounts of time into constraint induced movement therapy which I also support but unfortunately she looses what she has gained after she goes back to doing what is easiest for her using her strong right side. I have no doubts Cassie will make gains with an intensive program like CE because she makes huge gains in every program she participates in. I am glad I linked to Susie as there seems to be alot of good information on this web site. The internet is how I found Ability camp. Keep organizing the web site Suzie, If I can find the info I am looking for easily I am more likely to read more. The camp here has no written material which I find strange. Like alot of mothers of children with CP I am always overloaded, I lead a hectic life. I have slowed considerably these two weeks because I am away from home.My first two weeks at this camp I have loved what I have seen and more importantly my daughter is having a fun, enjoyable time and she seems eager to do the program. This is what truly matters to me.I excitingly await more responses from others and love sharing information. Take Care
20 February 2009 10:37

Susie wrote me an email and I loved what she said about Conductive Education:

"CE is not about 12345, plinths and boxes, it is about learning to have a healthy outlook on life, leaning how to motivate oneself to live an active life. It is about having a healthy soul which in turn will make movement so much easier."

This fits in with my philosophy of what I want for Cassie as she grows up with cerebral palsy.

Susie also recommends some reading I would like to do with the help of my German speaking husband. Here are some books she recommended. A book by Maria hari which you can get from the NICE library website...Mária hári on Conductive Pedagogy and a book by andras petö written in german under the name Dr Otto Barnklau. Unfug - Unfug der Krankheit-Triumph der Heilkunst, Dr.Med. Karl Otto Bärnklau, (Dr András Petö) Karl Schustek Verlag, Main, Hanau. These books may help me understand the man behind CE a bit better. You can read quite a lot about this book on Susies website in her andrás Petö blogs. too. Chris hope you can help with me with this husband!Cassie balancing an bean bag on her head.