Conductive Upbringing

English translation of Hungarian TV show about the life and work of András Pető (Part 3)

noreply@blogger.com (Viktoria) — Mon, 05 Sep 2011 08:12:00 +0000

The post below is the rough English translation of the one episode of the series “Hungarians of Sterling Worth” of the Hungarian Television featuring the life of András Pető. I added some explanations in brackets where I felt it was needed. Please click on the link below to watch the show on the Hungarian Television's website.

Hungarians Of Sterling Worth-András Pető (1893-1967)

Part 3 translation starts at 00.33.20

Tamás Vekerdy, psychologist: He was an absolute phenomenon and he was mesmerizing, he mesmerized me, and the children mesmerized me as well. I had been observing at the Institute for extended periods, for days on end. Everything that happened there, the way the children spoke, for example a 4.5-year-old who couldn't speak before at all and uttered his first words there at Pető. He told us what it was like when he was laying on an operating table with appendicitis and everybody was talking around him about how it would be much better for him to die, “it would benefit him since he’s a cripple”. He could understand this all and when he could finally speak thanks to Pető’s movement therapy—because movement brings speech with it—he told us what he went through in his earlier life. These children were mesmerizing; they were holding down one of their hands with the other to control them so that they could tell us what they wanted to say. They were writing poems, some of them were excellent mathematicians and this whole cleverness that there would be a school there—that one of the disabled children would be the librarian there as an adult, another one a teacher—was made up by him and brought together by him through paragraphs and law and other mazes with the help of genius and selfless colleagues for example Dr. Hári.

Sándor Török (Hungarian writer, 1904-1985): “I would’ve loved a little garden” /excerpt from his autobiographical novel/: "I visited one of the programs of the 9-10 year-olds’ once. This one was an academic class. However, it came to that the children started writing poems. They were writing the rhymes on papers kept down with their twitching hands far away from their eyes, with spastic muscles and with glorious smiles on their faces—all about motion. About rippling lakes, racing mountain creeks, rabbits grazing on a flowery meadow, passing clouds; and I was the witness of the Institute’s head professor starting his overnight vigil all for them."

Tamás Vekerdy, psychologist: It was also Pető’s idea that there were no strapped, tied down hands for children with over-movements. There were no tin bowls, etc., but there were China plates, glass jugs, glasses, hands moving freely—this was their way to try—at worst they’ll break. He made these children equal with all other children even in their everyday life and this had a huge effect on these kids. The individuum is impenetrable. The thing is how the immortal and impenetrable individuum is accommodated within its worldly body. Is it perfectly like for us who are more or less moving well or is it only a fraction of it that’s able to enter and the rest is left outside. Pető looked behind this. You’re the same, impenetrable, whole, sterling individuum—I can see this all over you—like everybody, you just can’t use your body the same way. I’m appealing to your immortal being and I’m helping you to use your body a better way. These were the highlights that could not possibly be bypassed in this approach.

Zoltán Vitó, poet/writer: Nothing is impossible. I don’t know how—maybe through a special talent--I was able to implement this to all areas of my life. It was his person who was the most important guidance. Thanks to this I achieved that I am a recognized poet and writer despite the immense disadvantage and prejudice; my writings are listed in literary and contemporary cyclopedias, and furthermore I have a beautiful young wife and a wonderful little son who consummate the array of my struggles and I can call myself a happy person.

Poem “About the magician of motion” by Zoltán Vitó (I am lacking the qualities to be able to translate a poem like this.) The poem is about Pető. The poet compares the ability to move to good wine and flush of joy; once one learns to walk they know that nothing is impossible. Will, heart and mind are able vanquish any monster.

Mária Hári, MD, College Professor: Peto had a message of higher meaning for everyone. People usually remembered this for life. I was unable to completely follow through what I received but he said countless times that “There’s no me, just this” and “it’s not because, it’s in order to”. He took it for granted that he needed to keep his world in order around him. He believed that order around you comes with order inside you and he took care of these very well. Part of the order was to carry through and complete each thought and each action, and to turn all failure into success.

Mária Herczeg, College teacher: He taught all his colleagues the most basic thing: thorough observation—or rather—he taught us to see; to extensively observe and see.

Gyuláné Kozma, College Teacher, Director: Professor Pető thought that when it comes to the complex personal development of the motor disabled child, the nice environment, the nice human face and the nice soul hiding behind the nice human face play a significant role.

Erzsébet Gárdos Kőrispatakiné, assistant professor: There was a homely atmosphere. It was a closed little republic. We were almost excluded from the outside world but in a good sense. He took extreme care so that everything happened in the children’s interest. They received the best of everything: food, people…

Aladárné Őrfalvy, Head of Department: It was very important to look good. There were rumors about—I don’t know whose idea this was—everybody was talking about ‘Pető girls’; that only pretty ladies were employed at the Institute on Villányi Street. Well indeed, he kept an eye on us if we looked appropriate at all times.

Erzsébet Gárdos Kőrispatakiné, assistant professor: The lady colleague who didn’t help the children the correct way, didn’t look appropriate or didn’t keep everything in order was often sent off to pick up their “Employement book” (i.e. they were fired). However, he usually changed his mind, asked them to come back and tried to look into how to help instead.

Éva Óra Takácsné, Head Conductor: He saw me coming in to work on one occasion. My hair was—like a young girl’s—a bit messy. He looked at me and asked me why my hair was messy. I humbly said that I had not have time to go to the hairdresser. “And you didn’t have money either”. He gave me 100 Forints [Pető’s salary was probably 500 Forints]. “Go to the hairdresser, and when your hair is done come in because I’d like to see it.” Then he said in a funny manner: “Don’t spend it on food”.

Aladárné Őrfalvy, Head of Department: Accepting gratuity was inconceivable. Instead, he gave money to the needy. We were even forbidden to accept a bouquet of flowers. [This was, and still is extremely rare. Generally all healthcare professionals live on parasolvency in Hungary as they have to supplement their meager income.] He took this very seriously.

Péter Popper, psychologist: He was poor as a church mouse. This did have a good reason: I believe he spent at least half of his income on taxi. He always got about by taxi; he couldn't move very well. I didn't see any luxury in his life other than the taxi. Once he—I know this because it caused a lot of trouble—suddenly decided to spend his entire monthly paycheck on chocolate and candy which he shared out between the children at the Institute. Subsequently he came to realize that he had left nothing to live on and he adopted a Széchenyi sort of policy: “my friends will support me” and that is what they did.

Sándor Török (Hungarian writer, 1904-1985): “I would’ve loved a little garden” /excerpt from his autobiographical novel/: “He was ailed by many illnesses, some very serious. There were times when he couldn't even lift a chair; he was pulling it behind him. When the elevator was out of order—he lived on the 5^th floor—he made arrangements with the ambulance to take him to the Institute on a stretcher in the morning and bring him home in the evening. “Now"—he said while in a bitter mood—"I don’t even like very much what I do. Destiny put me here and it’s forcing me to remain. I’m guilty. I’m not keen on my destiny at all, but I do have to fulfill it.”

Péter Popper, psychologist: Gábor Palotás [MD, special educator, college professor], who also belonged to his circle of friends, came in out of breath: “the Professor was put into retirement” “That’s not a problem”—said the professor—“the problem is that the paper boy is already far down the street.” He picked up the receiver, called the Party Central Committee, one of the bigwigs—I’m not saying his name on purpose—and he said: “Pető here. I was put into retirement yet again.” The Ministry rescinded their intent to retire him a week later and apologized to Pető. They didn’t like András Pető, they would’ve done everything they could to close the Institute. The stupendously huge international popularity of the method and the Institute came when Pető was already dead; it didn’t happen in his life.

Gyuláné Kozma, College Teacher, Director: I’m very proud of the fact that this special Hungarian product—intellectual product, this special Hungarian product, let’s say ‘Hungaricum’, it’s a fashionable word these days—is still its strongest in Hungary despite its 15-20 years of international propagation. The Pető Institute is the central place of Conductive Pedagogy. So if they’re starting anything involving Conductive Pedagogy in Australia, New Zealand, Japan or America, it is certain that a Hungarian professional trained by us is taking part in it.

Lucia Alvarez, College Student /Spain/: They are opening a Pető Institute in Spain and we’re here to learn the method.

Nuria Idoate, College Student /Spain: I didn’t know anything about this whole thing up until 2 years ago. It’s very interesting to me. You teach the patient to think how they have to do the movements. First they think it over how they do it, then they do it.

Dorte Kirkesov: I’m from Denmark, I’m a pianist. I came here to try out the Pető method. This is a very useful method because it treats the whole body; it moves even the defective side of the body. It’s difficult to use your bad hand, bad arm in everyday life. It’s much easier to substitute it with the other. It’s great that they move the body symmetrically here. This is what I aspire after. It’s great that they make you especially conscious about this here, and that you have to try it every day.

Zsuzsanna Baján Gróner, College Student /Israel/: I was really looking for this—this sort of—help, when you can see the results. This is important when you’re helping somebody: to see the results. We call our Pető Institute ‘Tsad Kadima’, which means ‘one step ahead’. This is what this is all about: one step ahead.

Lea Masasa, College Student /Israel/: My friends were curious what I was doing here. Some of them came to have a look. They saw the programs and they liked them very much. They especially liked the way I was working with the children so that they can be more independent in their life.

Éva Bokor, College Student: What I like the most is that the children always come first. We’re doing everything in a way so that it’s best for them, regardless how much time and work it takes.

Eszter Kárász, College Student: I believe what this method really is and what it is about takes a very long time to realize; this may be my defect only but I didn't succeed in realizing it straightaway. You have to make it a part of your being for you to be able to comprehend. The reality is that I am in my fourth year now and I just started to comprehend; I may not even be able understand what it is about, only sense the meaning of it somehow. I’m not sure it’s possible to fully comprehend it the first place, but it’s possible to sense what to do to bring out the hidden abilities of the children instead of forcing our will on them. We've been taught and told about a tremendous amount contradicting things about András Pető. I would've loved to know him personally, I’m sure he was a fantastic fellow if I can put it this way…

Mária Hári, MD, College Professor: What he created is performance of art; he established new quality. He was a creator—everything he knew became one to give birth to something completely new.

Dr. Pető András Szombathely, Hungary, 11 September 1893, Budapest, Hungary, 11 September 1967

Reporter: Hajni, I would like to ask you to recite the beautiful poem you wrote.

Hajni: "If I could walk"

If I could walk

I’d be happy

We could go outside to the garden in nice weather

We’d run around with my brother, we’d even climb the trees

If the tree was high, we’d climb on top

If the ground was warm we’d roll on the grass

We would chase each other with my dog

And we’d laugh in a great mood

If there were a lot of bushes in the garden, we could both hide

But until I can walk we won’t be able to play tag.

[Hajni's original Hungarian poem rhymes.]

Reporter: Do you like coming here to the Pető Institute?

Hajni: Yes I do.

Reporter: Why?

Hajni: Because I know I’m making progress in my ability to move.

Reporter: What progress have you made so far?

Hajni: I've learned to walk independently using a walker.

Credits

English translation of Hungarian TV show about the life and work of András Pető (Part 2)

noreply@blogger.com (Viktoria) — Fri, 02 Sep 2011 10:06:00 +0000

Hungarians Of Sterling Worth-András Pető (1893-1967)

Part 2 translation starts at 00.16.53

Péter Popper, psychologist: I remember there was a little boy who I was supposed to teach to walk up and down the stairs. There were these training stairs with three steps up and three steps down. We were getting nowhere. I was about to go blonkers because the kid always dropped down; he kept collapsing over and over again. I said “Professor, I can’t do this. I don’t know what to do.” “ Show me how are you getting on.” I showed him; I wasn't getting anywhere, the kid always dropped down. Then the professor stood up, he waddled over to the boy—I remember his name—and he said: "Illes, you’re great kid. You’re a wonderful kid. We admire you." Then he put one of his fingers on his shoulder like this. "You’ll walk through these stairs. You’ll walk through. You will." Then Illes walked through the stairs like a champ. Then I said "I’m sorry, if this is the way of doing this, then this is not my path."

Péter Ruffy: "On the path of no path" /excerpt/: "He didn't recognize the word incurable. You were not supposed to utter this word in his presence. When he was sitting in one of the rooms of the Institute with the children who were first helpless, but they were slowly learning to eat, drink, walk, write by themselves,-- he sang with them, he played with them, he did the movement tasks with them-- nobody was permitted to disturb him. He didn't answer the phone, regardless of who was calling."

Péter Popper, psychologist: The professional community despised him. They were circulating the rumors that he didn’t have a medical degree, that he was a quack. They were constantly trying to dump him. Well, He was an eccentric man. He wasn't a conformist.

Let me tell you a story then. There was no organization of the Party in the institute of movement therapy. I think it was the only such place in the country. Why there was no orgazitation of the Party? Because Pető wouldn't allow it. He said one institute can only have one head. "It can’t possibly be that here I am the headmaster, and there’s an other party secretary." They told him that there has to be an organization of the Party. "Allright then," Pető said, "I’ll be the party secretary." "Professor, are you joining the party?" "Absolutely not", he said "but you can trust me on completing all the tasks of the party secretary honestly beyond question." So it happened that the party members employed at the Institute were brought under the organization of the regional pedagogues. They didn't like him very much…

Tamás Vekerdy, psychologist: The medical community wanted to destroy Pető. Then a strike of genius came to his mind. Not only that he made the children roll over to Labor Movement songs—they loved this at the party central committee as some of the comrades’ children were healed by him and he invited them to the Institute—Pető couldn’t care less what the children were singing but he knew that this will be a stunner for the comrades. Pető was nuts like this…but the main idea—they cooked this up together with Sándor Török (the writer) was this: “I can’t warrant ‘curing’. I have to get rid of the doctors. I don’t ‘cure’. I raise and educate.” Therefore the original name—Movement Therapy Institute—was changed to Movement Education and Teacher Training Institute. “This gambit will transpose me from the Ministry of Health to the Ministry of Education. Education is allowed, since it’s not a science—not in the same sense as medicine [not a natural science]. I’ll say I educate, and then they’ll leave me alone.” This panned out well, and these were the times when I paid him visits. He was a genius. He employed inspiration and intuition in his work. This approach itself—which doesn't believe that if I draw a thousand different types of secretion, feed it into the computer which will spit out the results as sure as death and taxes like it would in American medicine (in Hungary if I feed the same secretion into the computer 5 times I will have 5 different results because our computers aren't good enough)—in the meantime we have long forgotten the Vienna-Budapest Internist Medical School’s genial, intuitive “blick diagnose”; I just look at the patient…They were saying at that time that an internist ripens by the age of 50 to 60—Pető stood for this as well. Nevertheless, this whole thing did have a medical premise so to say, and I can also say that he represented a middle-European model of approach.

Dr. István Eke, jurist: I was born as a healthy baby on 4 May 1960. When I was 11 months old I contracted viral encephalitis and this caused my illness. The virus—because this was a virus—attacked my cerebellum, and obviously the illness affected my movement and speech very seriously. I've been coming along from there to where I am now in the course of just over 40 years. I took a degree in law in 1989; I got married in 1998. I have a beautiful and wonderful little wife, and as a matter-of-course I’m trying to live a full life. I learned there at the Pető Institute to dress myself independently and somewhat feed myself independently. I had to learn how to hold onto the spoon so that it doesn't fly out of my hand 50 feet away and I had to learn not to let the plate fall and to control my over-movements. When I was small I had this problem that I couldn't put my pants on. Then I was practicing it over and over again, I was moving back and forth until I figured that if I roll over onto my stomach I can put them on. I got praised ever so much for this because I carried this out independently, and I've been putting my pants on like that ever since. These movements that we learned there soaked in during the long years and you don’t forget them. You don’t forget either the movements or (this may be a mismatch) the humanitarianism that I got there, from the Pető institute.

Mária Hári, MD, College Professor: Once the individual has learnt the strategy, it would be practiced through everyday life, in every moment. If I divide the day to 5-min intervals, he has to be there at all times to follow through what he has learned. Therefore if he followed through during tooth brushing, breakfast eating or going to the theater, during playtime or during watching television, then the learned things will be transferred. Pető said that it is not possible to obtain results with the most outstanding method if the skills aren't used during the entire day.

Dr. István Eke, jurist: The discipline was Draconian. We were sleeping on the plinths on two folded blankets (we had pillows and sheets of course), but when we were doing the exercises we did it on the bare plinth. This was tough. András Pető—with a child’s eyes—was very strict, but at the same time very humane. He was very strict, but he was always—in my opinion—standing for our interests and our growth. When we were demonstrating a task series to András Pető showing him what we've learned so far and he saw how much we've improved since the beginning, he was very happy. He even spent his entire paycheck now and again to buy toys and candy for us.

Zoltán Vitó, poet/writer: Everybody who knew him will mention his great strictness, his implacable rigor, which I experienced as a child but curiously, my untainted pure childlike sense of justice always found him righteous, no matter how frightening it looked from the outside. There were some basic rules of the healing work which were forbidden to break. For example when a child’s feet were hanging downwards because they didn’t have the appropriate sized footstool under them, this was considered a mortal sin; when this happened, Professor Pető was roaring to bring attention to this horrendous law-breaking thoughtlessness. At the same time I also experienced that he had a warm heart—there was a sea of unlimited warmth behind the strictness.

Dr. István Eke, jurist: He always encouraged us. He often pat our head or praised us and said “you see, you can do it” and sure enough children need praises. Let me also mention our conductor’s name, Zsuzsa Kosaczky (? I apologize for the possible misspelling of this name; if you know the correct spelling please make a correction in a comment)—she didn't demand anything. They asked. “Listen, István, you can do this, would you? Please try it.”

Zoltán Vitó, poet/writer: When I started walking—after many years of hard practice—independently, I couldn't yet put my heels down. I started walking in a way that I stood up, swung myself forward, and if I didn't want to land on my belly I had to step forward with my foot; I scampered and walked. I wouldn't have yet been able to stop while scampering because for that you needed to stand firmly on your feet. I remember one of these scamperings: I took a direction and landed between his knees. He was so touched that he kissed me on my head. It was a paternal kiss. I think this was the greatest acknowledgement, and he rewarded my performance with this.

Tamás Vekerdy, psychologist: Later on as I got closer to him he once told me—he was explaining me what the problem was—“look, they bring in a person in here. He can’t move. They roll him in here. Then I meditate. I look for the therapeutic movements that he needs. Then we’ll do those. Then they ask me ‘how are you healing’; I can’t say I’m meditating, they’ll regard me as a cretin and they’ll take the children off me” and so and so on. So he couldn't say this, but he had to say something, and meditation wasn't a good enough explanation. He was obviously very informed in the fields of Anatomy and Physiology and so on but he had the face to say things like “is it really that big of a matter if some nerve fibers that should start a movement are missing? It is not a huge matter. The stimulus will somehow run down, but we mustn't disturb it. That’s why we’re counting; so that you empty your consciousness and then the stimulus will run down. Somewhere, in the muscle. Nobody knows. It will somehow run down and the person will move.”

Conductor: “Take a big step forward. I’m holding your shirt here so that you feel safe. That’s it! Very good…I’m holding your little finger. This was great, you’re so clever…”

Péter Ruffy: "Grandiose Angry Man" /excerpt/: “One of his colleagues said that he’d known him for 20 years but he still didn't know who he was. Another one of his old colleagues noted that he was a mountain range that you couldn't see the peaks of. He didn't tolerate any indulging in personalities. He was impetuous and stern, he was angelic and stubborn, grand and extraordinary. He lived for others.”

To be continued

English translation of Hungarian TV show about the life and work of András Pető (Part 1)

noreply@blogger.com (Viktoria) — Thu, 01 Sep 2011 08:04:00 +0000

Hungarians Of Sterling Worth-András Pető (1893-1967)

Zoltán Vitó, poet/writer: I was his student for 7 years. When I was brought in there I couldn't even stand up by myself. When I left at the age of 15, I left on my own feet; I hopped on the tram and went home. He taught “impossible doesn't exist”, and this has been my governing principle throughout my life whenever I had to fight my battles.

Dr. István Eke, jurist: Let’s say “I clasp my hands” which is natural for a regular man—I don’t even like this word “regular” but it doesn’t matter now—for a non-handicapped person it is natural, but for us it wasn’t. We had been practicing it for months on end. As a child I felt this was tough on us, but now as an adult I feel it was well worth it because I was given a lot: both regarding my approach and my physical abilities. What I’ve got regarding my approach is this: never, ever give anything up; impossible doesn’t exist. There’s no such thing as ‘impossible’.

Sándor Török (Hungarian writer, 1904-1985): “I would’ve loved a little garden” /excerpt from his autobiographical novel/: “I was observing a youngster once in one of the rooms of the Institute: a patient—or to better suit the Institute’s philosophy, a student—he started off at 10am at one end of the room. His ‘homework’ for the morning was to reach the opposite wall. He was pushing a chair in front of him, slowly, inch by inch. The room was approximately 20-25 feet long. By noon, he reached the middle of the room. There he took a break, turned towards me, and he uttered his words triumphantly, with indescribable happiness written on his face: “They healed me in here!”

It’s not that you need to use your hands to help most of the time—as professor Pető was once explaining it to me—you have to approach them from the inside. The deeper I am able to connect with them, the more effective I become.”

András Pető, MD, 4 Klotild St., District 5, Budapest, non-party [the Hungarian Socialist Workers’ Party and its Stalinist predecessor, the Hungarian Working People's Party. This is significant, as being a non-party shows Pető was a non-conformist and rather brave], single, 57, Director of the Institute of Movement Therapy of the Special Education Teachers’ College:

“I’m coming from a lower middle class family. My father was a storekeeper and post office director. My mother was an elementary school teacher before she got married. I disappointed a lot of people. Some expected me to become an excellent mathematician. Some envisioned me to become the next great poet of Hungary. Others thought of me as an emerging German-tongue poet-star. Some others thought I would become the star of pulmonology. Nonetheless, just to add insult to injury, I lived a life of adventure, misery and pleasure; I often had no idea how I was going to make a living. At times when ill-fate caught up with me I took up jobs as a physician at various pulmonology hospitals, physical therapy institutes, mental health hospitals. Later I became a medical science writer, an editor of a medical journal, and the director of a medical publisher. I was just starting a medical and science press company in Paris, France when the war broke out. A friend of mine and his wife asked me to come to Budapest, where I was driven into movement therapy. I became famous, and I paid income tax as a physiotherapy teacher. One of the fully recovered patients forced me into the College of Special Education, and that’s where—after combatting a lot of difficulties—the Institute started off. I had less and less time for my adventures with women, men and objects, and with life’s strange circumstances; I held myself to a strict daily and weekly routine. They tried to fire me from the Institute several times with great vigor, but I fought my battles and held on tight.”

He died in the Institute in the afternoon on 11 September 1967, on his 74^th birthday.

(A short footage of Pető’s funeral is shown; Maria Hari is saying goodbye.)

Mária Hári, MD, College Professor: “His mother was an outstanding pedagogue. His grammar school was a very famous monastic school; his teachers were outstanding monks, one of whom introduced him into modern literature. He became and remained very widely read. Pető was a Renaissance man.”

Tamás Vekerdy, psychologist: When I’m searching for Petö’s roots, I can pinpoint two things: The first is the Budapest of “Nyugat” [Extremely important literary periodical in Hungary 1908-1941], and the other one we can find in Buddhism I think—based on what he later became. He was unbelievably unique. He was the child of the Budapest of the early 20^th century, the Austro-Hungarian Monarchy; he belonged to the folks of the “Nyugat”; Karinthy, Ferenczi, Kosztolanyi [2 important writers everybody knows and read in Hungary and a psychoanalyst who was their friend]—so don’t think of a Buddhist monk in the Eastern sense. He was a man who excelled in torturing his maid. He hosted fantastic dinners. He checked himself if the roast beef had the perfect texture and if it didn’t, he sent it back. In the meantime, there was an abundance of his own dramas that he wrote incognito in German at the bottom of his closet. I don’t know how to say this: He was a well-rounded man, and he succeeded in creating something extremely important from this; something deeply entwisted with this land.

Mária Hári, MD, College Professor: You can tell he was extremely well educated if you look at his library. He picked and chose each and every piece himself. It contains philosophy, history of medicine, history of religion, literature, in a fine and distinguished assortment. When there was a power cut and he was looking for a book in the pitch dark, he just reached over and found the exact page he was looking for. Sometimes the books were only pages because he got rid of what he didn’t find worthy of keeping.

Péter Popper, psychologist: He had a very peculiar way of looking at people and the world; a way of thinking and the way he related to people. Pető said: “my son, in each stage of your life the most important thing is to live your fate”. I said “but Professor, how do you know what your fate is?” “You know you’re living your fate”—he said—”when you do what others are pressing on you to do”. The professor said “look son, if you happen to take a bitter piece of bread into your mouth, swallow it, don’t spit it out; because if you spit it out, it’ll get back into your mouth a hundred times, each time even more bitter than it was before”. I know this is a Buddhist doctrine but Pető didn’t tell me that; he just gave me this piece of advice in relation to one of our conversations. However, don’t think we were always talking about fate. I remember that once he looked at me and said: “my son, if you ever get into the blissful situation that two women are fighting for you, then your job is to do nothing. The more aggressive woman will take you and that will be perfect for you”.

Tamás Vekerdy, psychologist: His references made it clear that he was very familiar with Judaism as well as Christianity; he could make sense of its deep mysticism. By all means we can say that he was a man for whom transcendency—the transcendent origin of the human individuum—played a significant role, even though these thoughts weren’t fashionable at that time.

Sándor Márai (Hungarian writer, 1900-1989): "Diary" /excerpt from his autobiographical novel/: “P”, the wonder doctor is visiting me in the evening. He looks like Karinthy, but older and even uglier. They brought him to me when I was ill. I didn’t venture to take his remedies, but at the end he helped me: he shook me up from my lethargy. His knowledge is vast, especially in the field of medical history, Chinese medicine, etc. He’s a nutter, but he’s a colorful, strange, precious nutter who has his mind in order. He’s currently working with 20 crippled children in an institution. He gives the paralytic, sclerotic, handicapped children back the desire and ability to move; he gets rhythm into them. It’s quite possible that his method is worth a lot more than medicine that has been by and large ineffective so far.”

Mária Hári, MD, College Professor: He really found absolutely everybody suitable for something. He looked at the world in a way that he could make everyone useful; he found something positive in everybody. The examination [of new patients] at our place was not the way it was elsewhere: we weren’t examining the knowledge or ability that was missing. We call it ‘operative observation’. I’m inspecting what is it that I need to do so that he can do what he now can’t…because disability lasts forever, it stays, but you can chance the dysfunction into function.

Tamás Vekerdy, psychologist: “What happened was that patients officially deemed incurable by medical science suddenly just started getting ‘cured’. For example a girl who broke her spine stood up. When the assistant professor came to visit from the Medical University what was going on, he said: ‘I can see it, but I don’t believe it’. They preferred calling him a charlatan from then on, because there were examples of ‘miraculous recoveries’, but he couldn't explain how he achieved it. That is to say he could explain it, but it would've been difficult…

Mária Hári, MD, College Professor: There’s a gap between the conception of the movement and the performing of the movement. He intends to do it, but he can’t accomplish it in an appropriate way. The wonderful thing what Pető came up with was that he figured he had to change the way of the intention, and he had to teach the way of the intention. This concept was non-existent. [He taught] how to want [to do a movement]. For example: I want to hold onto my ear. If my muscle tone is spastic and I want to hold onto my ear I’ll do this [Maria pretends that her arm jerks up]. This is a bad automatism and I can’t hold onto my ear. However, I can be taught how to want to hold my ear; I can be taught a different strategy. I can be taught to slow my will down, put my elbow forward [on the top of the table], wait for the stiff muscles to relax during the slow rhythm (because slow rhythm relaxes stiffness), then use the relaxed tone and hold onto my ear [Maria shows how].

Sándor Márai (Hungarian writer, 1900-1989): "Diary" /excerpt from his autobiographical novel/: "I was in Dr. P’s Institute in the afternoon. The equipment is incredibly scanty and clean. They are just having their ‘treatment’. They are singing and counting in groups. They’re making rhythmical movements that look like some old, cultic religious chants. All cases are incredibly severe. P’s method gives rhythm to the handicapped limbs through singing and counting together. His experience is that the group gives you self-confidence; it becomes a collective rhythm, which has the effect that the handicapped limb will revive. ‘If you can move your arms, you can move your legs as well’—says P. Then: ‘man doesn't write with his hands, so what’—he’s right. This constant buzz, whoop-de-doo, rhythmic singing shuts the children up without a doubt and releases something inside them. One of the boys—looks like 6, he’s name is Palika—he’s really 15. His limbs are completely atrophied, he can’t speak. I’m sitting by his plinth for an hour as they’re teaching him to speak. He’s getting individual treatment, they’re stretching his limbs. At the end they’re pushing the chair to the common dinner table. The ritual singing and hand-moving doesn't cease here. The little ailed fingers are grabbing the spoon, the rhythm doesn't leave them for a minute; something started moving inside them, and it’s now artificially kept alive by P’s method. Palika is smiling because he’s allowed to sit at the table with the others. This smile is the oddest I've ever seen on a human face. ‘It’s not worth dealing with anything but hopeless things’. "

This is about 1/3 of the show. To be continued

Conductive Education, the Brain, and Dr. House

noreply@blogger.com (Viktoria) — Sat, 05 Feb 2011 17:30:00 +0000

If you watch TV, you may have seen this scene from episode 15, season 6 of Dr. House:

http://vimeo.com/10625634

Wow, how interesting! Sadly, the brain imaging procedure shown in the clip, called “cognitive pattern recognition” doesn’t exist. House says “it’s not magical, it’s experimental”, but exactly magical it is! There is no brain imaging device today with the help of which we could see pictures and thoughts in someone’s brain. It is entirely fascinating though…just like time travel, or traveling with light speed (just press the light speed button, whoooosh!). It’s so much fun to watch movies. This is for now—as it’s supposed to be, and as you’d expect from a TV show—entertainment.

Entertainment it is, but don’t we all just love this stuff? I went to college in the 1990s, in the “decade of the brain”. The entire topic—brains, neurons, new neural connections, “brain plasticity”, etc. –just blew my mind. I was sitting through the Neuroanatomy lectures with my ears wide open, eager to discover the secrets of this mystical, magnificent organ, learn the names of the parts in Latin, their locations, their functions. I soon had to discover though that I’m not going to get the answers I was looking for, which left me somewhat disappointed. The profession I was studying—I was training to be a conductor-teacher—was not based on any sort of fancy brain science. We did have to study Anatomy and Neuroanatomy since we were teaching disabled children and such knowledge of the human body was deemed necessary to be able to do this job well, but this didn’t mean that any one of the teaching methods or techniques that we were also learning about during lectures and in practice, in the classrooms, had any more backing in neuroscience than any of the same teaching methods and techniques used by any teacher in any school around the corner. Teaching just turned out to be teaching, and it worked if the children ended up learning. We were taught, in theory and practice, the how-to of working out new teaching methods if the teaching methods we tried so far didn’t work. We were taught not to give up on the children, we were taught that it is in all cases the teacher’s fault if the children don’t learn, it is because we didn’t choose the correct methods or didn’t allow enough time and opportunity, and not because the child is too disabled to learn, as there is no such thing. The proof was right there: children with various levels of disabilities were learning all sorts of “impossible” things seemingly against the odds, through processes that us trainee conductors had to observe, understand, and then do ourselves. In the meantime, we were taught exactly this much about what’s happening in the brain while the children go through the learning process:

“Despite the injury, the central nervous system always has reserves that aren’t injured. These parts may take over the functions of the parts that are injured.”

Anyway, it was something like this. We were taught this much mostly because this is how much just about anybody can guess. If you look at the “Good reads” links on the right side, you’ll see a link called “Neuroscience for Kids”. The site may be intended for kids, but it does actually establish as much as it is known about the brain today, minus the details. The wording of the articles, for example this one about learning and brain plasticity http://faculty.washington.edu/chudler/plast.html correctly includes “some evidence supports” and “according to XY” which are the appropriate terms to describe something we have good guesses about, but we aren’t sure.

Fascinating brain science here or there, science is just science, not to be confused with science fiction, or science of the future. We do know a lot more about the brain than we did 50 years ago and we now have incredible imaging devices like MRIs but we still know almost nothing compared to what there is to know. Nobody to this day can look at an MRI of someone’s brain and tell what the person is thinking, or knows, or can do. Great professors and 21^st century technologies here or there, nobody on earth would be able to tell you by looking at two random brains which person can play the guitar.

It is because of the extremely interesting and mystical nature of brains, and brain injuries, and because of the fact that the topic is very widely present in pop culture and entertainment that I can’t blame anybody, especially not parents of disabled children for falling into the trap and trying to find solutions for brain injury by trying to reverse the brain injury itself. I do understand that it sounds logical: the brain is injured—this causes disability—let’s fix the brain injury—the disability will go away. It would be great if we could do this. I’m not sure how many people realize that if we could, it would be absolutely the greatest scientific discovery of all times, probably more important than any Nobel prize winning discoveries to date; this would give humanity such a power that is currently hard even to imagine: besides being able to cure a plethora of conditions, we could also transplant a brain from one person’s head to an other’s, we could transplant a head to a whole new body and the person would be able to walk away, we could destroy a person’s brain and grow them a new one (talk about starting afresh!), and…you use your imagination.

I hope it is clear by now that it is very unfortunate to associate conductive education, or pedagogy in general with brain science as this doesn’t lead anywhere, it just leads to science fiction and attracts ridicule. I can’t tell how many times I’ve been asked mostly by parents but sometimes by journalists and also by other professionals about the neurological background behind conductive education, but I failed, and I’m afraid I will always fail to give a satisfactory answer. I did try to satisfy the curiosity of these people, mostly by translating to English from Hungarian the one sentence I was taught at college (which gave me an awful lot of trouble, especially at the beginning, and I can tell it troubles some of my colleagues, too), but I gave up on that long ago as I found it counterproductive. All in all, when our children learn, something does indeed change in their brain—it must!—but we don’t know exactly what that is, and we have a very vague knowledge of how it happens. If you decide to ask me about what has happened to your child’s brain who has athetoid cerebral palsy and has learnt to produce readable handwriting in a conductive education classroom, please ask me at the same time when you’re asking your typical child’s Math teacher what kind of recovery his brain went through when he learnt to multiply numbers.

Therefore, we have no reason to try and analyze these changes in the brain since doing so won’t change one bit how we’re going to teach our children. There are much more useful things for us to do: we can learn more about teaching for example. We don’t have any reason to think that learning takes place in any different way in disabled children than it does in any other human, all we know is what we can observe: that it is more difficult and takes more time to learn with an injured brain. We can, however, also easily observe that learning isn’t impossible (why would it be, brain injury doesn’t equal total brain death) because our children constantly learn, don’t they? The disabled child learns the alphabet for exactly the same reason the typical child learns the alphabet: because they’re taught. Now, there is no doubt that it might be lot more difficult for the disabled child than for the typical child to learn the same thing, but difficult doesn’t equal impossible.

The main problem is that it is difficult, and sometimes incredibly difficult to teach a disabled person. Those who lack the necessary training, knowledge and experience to understand that difficult doesn’t equal impossible will not be willing to realize that it is their insufficient teaching methods, and not the disabled person’s inability to learn the culprit. Whoever teaches the disabled person—parent, teacher, any professional—has often to be very imaginative in their ways to work out new and new and cunning methods to teach. They also have to quickly realize when certain methods don’t work (whether they worked before or no, or if they work brilliantly with other children), and then they have to try something else, and then something else, until they succeed. This, as you have probably guessed, is the ideal situation and is rarely happening. Such approach is time-consuming and laboursome, and someone has to pay for it, so instead, today’s society is ready to accept “oh well, he’s disabled and he’ll never learn to hold his spoon”. You bet he’ll never learn to hold his spoon, especially if he never tried, or if he tried, he never got the chance to follow through the learning process—which can easily be long, very long and very difficult.

I have no doubts that this is the main reason why conductive education, despite having been around for about 70 years in its birthplace in Hungary and having been available for the West and the rest for about 30 years, is still not around in every household raising disabled children and is still not around in every school, rehabilitation center, playground and mind. Neuroscience, brain fixes and quick-fixes sound so much better than “hey, you have to put in a lot of time and effort and learn the hard way”, right until we understand that the first is not possible but the latter very much is. Parents who did understand this have been fighting and fighting for conductive education for decades now, and it will make another post to try and figure out the reasons why on earth this has been taking so long.

My respectful message to Ontario March of Dimes, and everyone else who participates in constructing web pages that give out information about conductive education, or anyone who advises parents or professionals about conductive education: Pie-in-the sky explanations and representations are okay in the Dr. House TV show, but they are sketchy in the fields of our profession. Don’t do it. Such talk may indeed attract more people first which may help your business, but in the long run, you’re only helping to spread ignorance and misinformation about conductive education, and I believe that is not your goal.

Guest post on Janet's blog

noreply@blogger.com (Viktoria) — Wed, 26 Jan 2011 05:50:00 +0000

Janet Harrold, grandmother of beautiful Hailey is doing a series of guest posts on conductive education.

A mom's point of view:

http://janetharrold.blogspot.com/2011/01/guest-post-from-cary-on-conductive.html

My contribution:

http://janetharrold.blogspot.com/2011/01/conductors-point-of-view-on-conductive.html

Thanks for Janet for the brilliant idea!

Why do some therapies work so well for some children and not for others?

noreply@blogger.com (Viktoria) — Thu, 04 Nov 2010 20:18:00 +0000

I encountered the above question a few months ago on an internet forum. The forum is big on promoting all sorts of alternative therapies for cerebral palsy, ASD and the like, containing numerous parent testimonials on how much HBOT, Stem Cell Therapy, the Feldenkrais method, diets and the ilk helped their child’s progress. The general message of the testimonials is “It worked for us, you should try it, too”, and “you don’t know until you try it” and it gets a ton of cheers by fellow parents for all the great encouragement.

Parents exchanging information is certainly a good thing; however, information about certain therapies being nothing else but well-advertised woo-woo isn’t always welcome on such forums, whether they come from a fellow parent or no. Criticism of therapies isn’t frowned upon though if it is presented in the form “well, it didn’t work for us, but it might work for others”, with “we’re all different” and so on, suggesting that it is unknown factors that make it a mystery why certain therapies work for some children and not for others. There is, however no much mystery here, but before we can answer this question, we have to look into what it actually means that a therapy “works”.

Asking the question of why the therapies work in some cases and not in others contains the presumption that the therapies do indeed work in some cases, we just don’t know why. This presumption is supported only by the testimonials, the sometimes detailed descriptions of the child before and after the therapy. The difference between “before” and “after” appears to be very convincing for the readers, who are then appropriately encouraged to try the therapy with their own kid without further questioning (not without further “research”; they may read 100s more of similar forums with identical content and may read the therapy’s various promoters’ websites in countless numbers; what they don’t look up is factual data and the realities of the human body).

Most people (from all walks of life, whether parents or not, regardless of how highly paid or intelligent they are) don’t know where to find research data, and if they accidently encounter it, they don’t know how to read it. This is not a sign of stupidity; most people simply don’t need such stuff and they probably have better things to do than going through medical journals and paying for articles most of which are crap anyway. But it is because of the average person’s total non-involvement in finding data first-hand that most parents never get to find out that this or that therapy has been, flat out, without a doubt proven to be doing nothing by competent scientists who designed their study to rule out biases (HBOT), or the therapy uses new science and technology involving potentially dangerous substances the safety of which hasn’t been established and there are doubts because they make animals sick (stem cell), or the therapy in question is benign, but simply a renamed, remarketed, often watered-down version of an already existing therapy (Anat Baniel method). They don’t get to find these out, therefore they rely on fellow parents’ testimonials.

Why shouldn’t we rely on testimonials?

If quack therapies don’t work, why do so many parents report that they do? Surely, nobody in their right mind would think that those parents are lying, or they’re trying to deceive others, or that they’re stupid and they don’t know what they see. We have a good reason to think that all those parents know their children well and they’re perfectly capable to observe their child’s abilities before and after a therapy event or a series of events. They see progress because most of the time there is progress. The child couldn’t say ‘daddy’ before the hyperbaric oxygen therapy was started, and now, 3 months and several sessions later, he can say ‘daddy. The child could keep his sitting balance independently for a few seconds before the therapy started, but has shown progress after each session and now he can sit for a minute. The results are clear, they’re even measurable!

However, none of these results show that the therapy worked, regardless of how spectacular they are. Children—all kinds of children, disabled or not—develop, learn and progress all the time. If we observe any child at a point of time and observe the same child later, there will be progress and WE WILL SEE THE PROGRESS, whether we subjected the child to therapies or no. Sometimes children seem to improve a tremendous amount in a short time, and unfortunately a lot of parents attribute the progress to the latest therapy they did, instead of the perfectly reasonable explanation of the progress: children observe, experience, participate, see, listen, move, play—they do things all children do, things that everybody does, things that are behind all learning of all human beings.

Simply because one thing (progress) happens after another (therapy), we have NO WAY TO KNOW that the second thing was caused by the first. Unrelated events follow each other all the time. Just by observing that B followed A (however correct that observation is) we can’t tell for sure that there is a causal relationship between the two. If events that followed each other were always in a causal relationship, then I could claim that the sun sets every evening because I drink a cup of tea every evening!

In order to establish a causal relationship between A and B we need a controlled study. There is no other way of knowing so far, regardless of how smart and intelligent we are. In a controlled study there is an experimental group and a control group, which are as identical as they can be except for one factor: the experimental group does get the treatment and the control group doesn’t. What we must observe at the end is the difference between the two groups, because progress, however great, doesn’t prove the effectiveness of the treatment if both groups progressed equally. If the treatment group shows better progress than the control group, then we know that the treatment is effective. (There is a lot more to know about trials, but this blog is not the place to gather that knowledge!)

If we choose to read and understand the results of such trials instead of reading the 100th testimonial, we come unimaginably closer to bringing the right decisions for our children and family.

There are, of course, no controlled trials for everything (there is in the case of HBOT), but we do have other means to see through products and services that offer miraculous recovery. If a therapy is based on the magnetic properties of human blood, we know that it’s bogus because blood isn’t magnetic. If a therapy is based on the awakening of dead nerve cells, we know we’re being set up because death is irreversible. If the therapy is based on injected substances that make lab rats sick, we have a very, very good reason to keep our children away from such therapy.

Our question “why do some therapies work so well for some children and not for others?” is identical to the question “why are some planets in our solar system flat while others are round?” Both of these questions presume a statement as true—some planets are flat, and the therapies do work for some children—without even considering that the statement might not be true in the first place.

The biggest problem with all the countless bogus therapies is not that they don’t work; the damage is caused by the wasted time, energy, and resources. If we spend our money on a course of HBOT instead of buying an adapted bicycle for our child with cerebral palsy, we deprive our child from a superb physical activity, fun and quality time spent together. If we spend our days driving back and forth from one therapy to the other, we deprive our child from having a healthy and predictable daily/weekly routine, consisting of plenty of playtime and plenty of time and energy allocated to allowing the child to participate in their own care. If we hang on to false promises and false hope, we won’t find the real hope—every human being alive, however disabled, is capable of learning—for a long, long, long time. The upbringing we provide will absolutely have a huge role in the child's development, but upbringing has nothing to do with medicine, quack or scientific.

The parent who finds that his son has improved after “every therapy under the sun”, may be correct in his observation, but is not correct in his assumption that his son’s improvements were caused by the therapies. One could wonder what if the child, who has such a great learning potential that he continuously improves despite being dragged though untold amounts of various woo-woo, was allowed to spend all that time playing, or god forbid, physically participating in play activities with other children? The boy would most probably have improved a lot more without the therapies.

Be careful with parents’ internet discussion boards. I know how much it helps just to get your story out there and share your thoughts and feelings with many others who are going through the same as you are. I know how relieving it is when someone, somewhere UNDERSTANDS. But you must be aware that parents of disabled children are not more likely to possess critical thinking skills than anybody else, which means most of them do not know of the confusion about correlation/causation. You can be pretty much assured that most testimonials you read on these sites are a result of a parents not realizing that their child’s progress is normal, almost inevitable, and not the result of woo-woo.

Please understand your responsibility if you have a website, blog, magazine where you allow promotion of quack therapies. If you claim that your site is not a medical journal and therefore it doesn’t have to be accurate, and that you’re just trying to help by allowing free flow of information and encouragement and so on, please consider that your site is used by desperate and vulnerable people and they might take seriously what they read. The “information” on your site may affect parents’ decisions and affect the lives of their families and especially their disabled children in a very negative way. While free discussion should always be allowed, you can always balance out the one-way effect of a site like that with providing links to sources where the reality about these therapies is revealed.

Finally, the above photo shows India actively participating in a family dinner, feeding herself and chatting away with the guests. This is a great achievement for her, and it’s not a result of medical, quack-therapeutical or magical interventions, it is simply the result of good old teaching and learning. We taught her to do this by organizing our day in a way so that there’s plenty of time for dinner, we set her up in a way so that she can sit with us, we asked her and expected her to hold her own spoon, we helped her manually when she got stuck (without taking the spoon out of her hand), cheered her when she took bites, and we did this EVERY DAY. It took time and effort to do all this, because you can feed India a whole plate of food without her participation while she’s sitting in her stroller in less than 20 minutes, while the conductive upbringing version of dinner used to take well over an hour. The stroller version doesn’t contain any learning opportunities, while the conductive version contains nothing else but learning opportunities. There is no therapy than can compete with that!

http://conductiveupbringing.blogspot.com/2010/04/heartless-vol-1.html

http://conductiveupbringing.blogspot.com/2010/05/heartless-vol-2-tale-of-oxygen.html

ht tp://conductiveupbringing.blogspot.com/2010_05_01_archive.html

Trick or Treatment: The Undeniable Facts about Alternative Medicine

How We Know What Isn't So: The Fallibility of Human Reason in Everyday Life

This is a first, and this is for real

noreply@blogger.com (Viktoria) — Wed, 29 Sep 2010 03:30:00 +0000

For anyone who read my elaborate essay on stem cell therapy for injured central nervous systems and is interested in a follow-up:

This is the first FDA-approved trial of human embryonic stem cell based therapy for spinal cord injury. The trial aims to assess and evaluate safety issues, with the secondary aim to find out if any restoration of function is possible in humans using embryonic stem cells. As opposed to adult stem cells from various sources, embryonic stem cells do have the capability of turning into something else than blood. In this case they're expected to turn into oligodendrocytes. (Not straight from the embryonic stem cells; read more here and here.)

The trial was supposed to start in January 2009 but it was placed on hold by the FDA because some animals developed cysts from the stem cells in the previous, animal study. Now the hold has been lifted (more animal studies were submitted to the FDA; treated animals regained some function).

This trial will enroll 10 participants, all of whom will have to have a very fresh injury: between 7 and 14 days old!

Now comes my opinion: The Corporation that has been working for 10 years to make these so-called progenitor cells (that are to be injected into the participants' spinal cord) out of embryonic stem cells is--very understandably-- pushy about doing this trial, because they want to get paid, and this, if successful, means big money. Now, there is nothing wrong about that.

What is totally wrong is that some "doctors" at quack clinics in developing countries (read: no regulation, no monitoring) are already getting paid, all without any effort to learn anything about stem cells but how to get hold of them; all without animal trials, assessing safety, learning about side effects; all without any real attempt to find out how to make this extremely complicated form of therapy to work or do anything at all. Their various assumptions (e.g. bone marrow stem cells will miraculously turn into neurons and restore function in patients who have been disabled for years) only sound scientific for someone utterly desperate to help their child (parent, sibling, etc.), but do not sound scientific for anyone who has ventured to read anything else on the subject but quack clinics' websites. There is, of course, no science in the Dominican Republic that isn't available in the USA; but in the USA, pushy corporations here or there, you'd have a hard time to get away with experimenting on disabled children of desperate parents (or on any humans for that matter) using untested substances based on as much science as a fairytale, requiring the parents to pay tens of thousands of dollars for the "therapy".

Well, I'm holding my breath! Any promising results of this trial would be wonderful.

A lot of good things (part two)

noreply@blogger.com (Viktoria) — Mon, 21 Jun 2010 09:13:00 +0000

This post, just like the previous one, is about the fun life of India.

This awesome girl has a disability that is caused by brain injury that occurred soon after her birth. However, she is NOT suffering and she is NOT struggling. She doesn’t think that there’s anything ‘wrong’ with her, and we’re not suggesting her to do so since we don’t think that would be helpful at all.

India

’s disability can’t be cured or fixed. We don’t believe that raising the false hope of a cure would benefit either

India

or her family, quite the contrary; if we spent our resources investing into those, we’d inevitably shorten her time as a child.

India

may have a brain injury, but that doesn’t categorize her as a different species! She is different, but she is not that different. She needs exactly the same that any other child needs: she needs to feel secure, loved, looked after. She needs her family and friends. She needs to be active and she needs to learn.

The only thing we can’t expect her to do is to learn and pick up skills via osmosis while she's doing nothing, whether she is alone or placed in a room with other kids.

Brain injured children learn exactly for the same reasons and through the same processes as non brain injured children do: they learn because they’re alive, and they learn through play, doing things, observing things, participating in things. When you teach a child to play, do things, observe things, participate in things, you help them do something that no medicine can help them do: learn.

These pictures illustrate how to help a child with little independent mobility participate in family activities and learn and have fun like any other child.

India

comes with us when we go hiking. She sits in this ‘Chariot’ carrier and her daddy pulls her uphill and I pull her downhill using the harness. While sitting in the carrier doesn’t involve her in the workout, she can see, hear and smell what we can, and she’s hanging out with us. Needless to say, she loves it!

We use the same carrier to take her on family bike rides; we just simply attach the carrier to a bike:

Ask

India

at any time if she wants to go swimming! She loves the pool so much it’s impossible to get her out. She loves daydreaming in the pool by herself, she loves playing in there with her sister or other kids or with daddy and me:

How about a dip in the cold stream in the mountains with daddy:

Or in the ocean!

And if we’re by the ocean, why not try water sports, for example jet-skiing:

Sailing:

Kayaking:

Or water skiing:

It’s less fancy, but equally awesome to sit and float on an inner tube while singing songs…

…especially because the children nearby will join in, look!

Summer is definitely fun time, but so is winter. Skiing is a great sport for the whole family and it can be adapted for anyone.

India

comes down the ski slope squealing ‘wheeeee’!

Equipment like a Chariot carrier or participating in adapted ski or water sports programs are neither free nor cheap, but in comparison to a course of HBOT( which is entirely useless) they look like a really good deal to me...

There is also a lot of fun for free absolutely everywhere.

Last autumn we had a hailstorm and it was quite loud on the roof! India kept asking: 'why, why?' So I let her watch the storm at the window, and when it was over we went outside to examine the remains (ice is very, very funny, in case you were wondering):

But the funniest ever is always daddy!

As I said before, brain injured children learn the same way as non brain injured children do. Furthermore, all children learn everywhere, not only at the designated place (school), but at home and wherever they are. However, the difference between a brain injured and a non-brain injured child would often be that the former will need a lot more planned teaching-learning processes with sufficient help provided; they need to be taught things we don't even think of because typical children learn those things 'automatically'. It is unfortunate that our society is still happy to declare that certain children 'will never be able to do' this or that, when they absolutely would if only they were taught properly with the extra work put into it. It is because of such declarations that they are never even taught, or taught with insufficient methods, and at the end the prophecy becomes self-fulfilling.

I wonder what would happen if the efforts that go into trying to 'fix' disability through medicine would go into trying to teach disabled individuals using a much wider range of methods than what is generally considered as 'teaching' today.

Happy Fathers Day Donnie! <3

A lot of good things (part one)!

noreply@blogger.com (Viktoria) — Thu, 03 Jun 2010 23:48:00 +0000

I've been spending ample time researching various brain injury treatments lately. I analyzed hyperbaric oxygen and stem cell therapy and although there’s a lot more on my list I really need to take a break from all that quackery. It gets very old after a while to read how health fraud is called ‘hope’ again and again, and how parents are made to feel guilty if they don’t want to try the latest ‘sham therapy du jour’. I just simply won’t believe that parents need to be deceived and told broad tales so that they can have hope. What’s the use of false hope anyway? There’s no use of such, especially when there’s real hope, which is right there for everyone to reach out for and which often gets forgotten in the maze of rubbish parents are thrown at. Real hope requires no abstract descriptions of imaginary processes and fake scientific explanations of brain oxygenation; it is based on a simple, no-hype theory the correctness of which can be observed anytime by virtually anyone: doing a lot of things may result in learning a lot of things, whether one has a disability or no.

I’m going to illustrate how it is possible for a child with brain injury (a child who can’t walk, talk, and there are a thousand more “can’ts” on her list) to do a lot of things and therefore to learn a lot of things while having a lot of fun and being a happy child. I’m using

India

’s photos for illustration, who has cerebral palsy.

India loves her power assisted wheelchair as it gives her freedom to change her place.

She loves driving around, looking at things and there’s no doubt that a lot of learning ca

n take place while sitting in a wheelchair. When one drives a lot, one certainly learns to drive safely and look out for obstacles, stairs, and there is a plethora of activities one can very well participate in while sitting.

The downside is that nobody should stay sitting all the time because our body, every

body’s body, regardless of the disabilities they might have is put together in a way that it needs to move in order for it to stay healthy. Lack of movement will have devastating effects not only on physical health, but on all areas of development; if you let a child’s body waste away you’re looking out for pain, discomfort, deformities, as well as it will slow down social-emotional development, cognitive development and communication. So, we have to get out, and we have to get out a lot more often than twice a week for an hour when our PT comes. When we get out, the things we do don’t have to be a form of therapy (although they can), they can just as well be regular play or everyday activities.

Lying on the floor and stretching out is great, whether it is lying on the stomach, on the back or on the side. The benefits of lying on the stomach are so tremendous that it would take several further posts to describe them. It is difficult for some children with high muscle tone to get used to this position and they may fight against it, so it may require you to stay on the floor with your child and encourage them to lift their head and look at toys and reach for them, or even creep or roll in order to reach them.

A lot of children will enjoy just lying on their back during their free play time.

dia

does, and we always make sure she has something fun to do while relaxing.

She is taking her doll’s clothes off on this photo. She tried to take the doll’s clothes off by shaking the doll—they didn’t come off, then she handed the doll over to me expecting me to do it for her! She had to be shown how to use both of her upper limbs so that she can do this activity by herself. This is how learning takes place. She couldn’t figure it out by herself because she has cerebral palsy but that doesn’t mean she can’t do it at all; she can, just somebody needs to TEACH HER HOW.

India

has the best daddy in the world. When daddy is around, the fun is plenty.

There is tree climbing with Sissy

Pretending to drive a car

Or driving using a simulator

Swimming with daddy

Or just copying the silly things that daddy does!

Copying and showing faces, playing ‘Show me a motion” with siblings, other kids or anyone can help improve speech and communication skills. Your child will never know that they’re ‘being improved’ at the moment, all that they’ll know is that it’s fun.

The greatest fun of all fun for

India

is dancing. Daddy can help her dance by holding her as he did during this wedding:

Or she can stand in her walker and participate in the great family dance party event!

TO BE CONTINUED

All these pictures are illustration—children with brain injury are so different that while you can certainly use others’ ideas of activities they did, you need to work out your own for your own child. There are professionals who know your child and who can help you tremendously with this. Your Conductive Education teacher is your great source (if you’re lucky enough to have one near; it apparently creates huge frustration that there aren’t as many as needed), but why don’t you ask your OT, PT, SLP/SLT? All these professionals are well trained in their own area and can give you advice about beneficial positions and activities for your child. Don’t just use them for the direct therapy provided for an hour twice a week (if you’re lucky), because two hours a week would not be enough activity and learning for your typical child without any learning difficulties, let alone for your brain injured child. Go ahead and pick the therapists’ brain and use their advice in everyday life.

Heartless Vol. 3: The greatest offender

noreply@blogger.com (Viktoria) — Thu, 20 May 2010 03:58:00 +0000

This has been my most ‘dreaded’ post to write. I’ve been sitting on this for weeks, trying to figure out how to convey this the best way possible. The promise of a solution for cerebral palsy that tackles the problem at a cellular level—stem cells with an ability to proliferate that turn into neurons and replace the damaged, dead parts of the brain of the brain injured person with new cells—is just so powerful that resisting the temptation to try it feels like resisting a drink of water in the desert at the verge of dehydration. Seems unreasonable, seems foolish. But what if the water is poisoned?

The aim of this entry is to show the poison in the water—for anyone who is interested to find out about this. The information provided here is not my ‘opinion’. My opinion is that every parent, who considers stem cell therapy for their child with cerebral palsy, has the right to access this information. I have no opinion over what they should do with this information afterwards—that’s for each and every reader to decide for themselves.

It’s worth to watch ‘21st Century Snake Oil "60 Minutes" Cameras Expose Medical Con Men Who Prey on Dying Victims’—it was aired on CBS in April 2010. The show exposes two fake doctors who set up patients with ALS--which is an incurable, progressive neurological condition with a bad ending—selling offshore stem cell treatments to American patients suffering from this condition. The patient, who is secretly filming the discussion is told by the con man that the treatment will keep him out of his wheelchair and states “We've gotten people out of wheelchairs” which later in the show turns out to be a lie. What a cruel lie to tell to a dying patient!

The show interviews L. Goldstein, one of the country’s leading stem cell researchers. He is overall more optimistic than other researchers, but that won’t hurt anyone provided he gives a true account of where stem cell research is as of today—and he does: “web extra” contains online additions to the original show. It’s explained that “Goldstein believes that legitimate stem cell research will yield tremendous rewards”. However, it will be the legitimate stem cell research, and not the prematurely commercialized, untested, potentially dangerous “therapy” that will bring the rewards. In the other extra content “A warning about stem cell fraud” “researcher Doug Sipp is concerned about the explosion of ‘off-shore’ stem cell clinics promising unproven stem cell treatments that don't exist.”

There are currently over 200 of these clinics which offer some form of stem cell treatment for a huge range of conditions. You can get stem cell treatment for whatever ails you: ALS, MS, Parkinson’s, cerebral palsy, cancer, stroke, spinal cord injury, it matters little, as long as you pay. As one would expect it’s people who suffer from incurable conditions who are most likely to seek out these establishments and purchase very expensive false hope. The treatment for any condition is usually the same within the same clinic, but each stem cell clinic offers its own version of the treatment. They use embryonic, fetal or adult stem cells. Embryonic and fetal stem cells are sometimes derived from rabbits. The use of human embryos and fetuses is and will always be controversial (legitimate stem cell researchers in the

USA

use leftover embryos from IVF treatments which would otherwise be discarded), but without them there’s neither research nor future treatment. The problem is that aborted fetuses are currently being illegally used at quack clinics for anything one can imagine. The aborted fetuses are sold for thousands of dollars in Eastern Europe (a form of breadwinning for women) and are used as materials for fake wrinkle treatments at anti-aging clinics which cater for oligarchs and their wives. (Warning: do not read the article detailing this unless you have a strong stomach.) Needless to say, cells or organs coming from fetuses are not capable of rejuvenating anybody regardless how much they’re willing to pay, and such activity has more to do with witchcraft than science; it’s the 21st century equivalent of the belief that that bathing in young virgins’ blood will keep you forever young.

Other clinics use adult stem cells derived from various parts of the body (in some cases they use the patient’s own), bone marrow, fat tissue or cord blood. Adult stem cells have been used in scientific medicine for decades now for things that they actually can do (blood forming stem cells are good at turning into blood) and not for things they can’t do (turning into neurons), in procedures that have been proven to be effective and safe.

It also varies where the stem cells get injected to: spine or blood stream, but there are examples of injecting them into the brain to avoid the ‘minor’ and yet unsolved problem that the stem cells can’t really get through the blood brain barrier and will never end up in the brain unless they’re put straight there. (This unfortunately caused the worsening of the condition /Parkinson’s/, but they had to try it on a person without trying it on a mouse first, right?) Each clinic claims that it’s their version that’s effective; embryonic stem cell promoters claim that adult stem cells are ineffective in treating neurologic conditions because they can’t turn into neurons (true) while they stay quiet about the fact there’s a huge risk of cancer; adult stem cell advocates claim that embryonic stem cells are ineffective because they’re unethical and can cause tumors, but they don’t mention that nobody has ever turned a single adult stem cell into a neuron yet.

The truth is that all of them are doing mere guesswork, that the ‘doctors’ at these clinics at best know as much about stem cells as legitimate researchers (who admit they don’t know enough yet) and at worst they know a fraction of that. All types of this treatment are unethical, not only the versions that use embryos or fetuses because it’s unethical to sell unproven, untested, dangerous medical treatments in unmonitored clinics for thousands of dollars in countries with lax regulations or easy loopholes. Embryonic and adult stem cells of whatever origin can all cause tumors because nobody on earth at this moment knows how to control them. This is what legitimate researchers are trying to find out now using mice, but they haven’t quite figured it out yet and until they do, the stem cells will do as they please. In case of the man in his 60s with ALS—who doesn’t have much to loose (other than part of his little leftover time he could spend with his family and his family’s inheritance) because he has 2 more years to live and before the end comes he will become totally helpless—any treatment may sound worth to try regardless of side effects. However, the risk just seems way too high and may not be worth it to try in case of a typical child with cerebral palsy (cerebral palsy isn’t a death sentence like ALS) who would do much better with acceptance rather than a fixing attempt in the form of a dangerous snake oil therapy.

The stem cell clinics claim to have treated millions of people worldwide with a wide range of conditions. They claim that they overturned ALS, Alzheimer’s, Parkinson’s, they claim that between 70-90% of patients experience improvements, including children with cerebral palsy. If they really had any kind of results, documenting just a few by scientific standards would stop the wrath of ‘western doctors’ (as they call them). However, there isn’t one, not even one single properly documented and published case report, let alone placebo controlled trial—if there was, it would be enough to initiate the treatment under controlled circumstances in the

USA

or in any developed country where standards of medicine have already reached the heights of controlling, monitoring and documenting. Some of these websites claim between 1500-7500(!) ‘clinical trials’, but those are not published, they’re nowhere to be seen, therefore they can’t be reviewed—a very comfortable position to put themselves in! I can just as well claim that there are thousands of ‘studies’ hidden in my drawer so I and only I know the source of inexhaustible free energy and that all the scientists in the world are years behind me.

‘Western doctors’ are accused of the wildest things on websites that aim to defend these sham treatments, the most ridiculous of which is suggesting that they don’t know the difference between embryonic and adult stem cells, which is absurd; it’s like accusing mathematicians not to be able to count their fingers (yes, it’s that basic).

Any legitimate

scientist (or any scientist doing stem cell research in a developed country) knows way more about stem cells of any kind than any of the charlatans. Let’s see what they have to say so we can find out more about stem cells and gain a better understanding of the obstacles they’re fighting to overcome before successful treatment for any neurological condition becomes possible.

“As a scientist who works with stem cells, both in culture and in vivo I could have told you this therapy was a bad idea. (…)If you had described this therapy to us, we would have told you exactly what would happen based on scientific knowledge of how these cells act in vivo. The therapies offered to stem cell tourists are frank quackery. They are unproven, untested, unstudied, and unmonitored. And to you anti-FDA libertarians out there, this is what you get when you don't have regulatory oversight of human therapies. You get stupid quackery. The fact that this kid's cancer was detected is probably just luck - there are likely many more people who have tried these therapies of desperation who suffered side effects, and possibly even death, but we just haven't heard about it yet. Ethical human trials require many things. At the very least, the therapy should have been tested extensively for safety in animals and ideally for efficacy in animal models of the disease.”
“The major remaining obstacles towards implementation of some fairly crude stem cell therapies are going to be (1) differentiating the cells into the appropriate tissues, (2) purifying the cells so that undifferentiated cells aren't accidentally transplanted into humans, (3) preventing tumorous growth in the transplanted cells (possibly including a lethal gene to reverse the therapy if necessary), and (4) proper anatomic delivery of the cells so they perform a useful function and survive in the host. We know what the problems are. Careful study must include addressing each of these issues and ensuring they are resolved before shoving them into someone's spinal fluid.”
http://scienceblogs.com/denialism/2009/02/tumors_in_a_quack_human_stem_c.php

“First, there is not a shred of evidence to suggest that you can just inject stem cells, and they will become whatever the hell you want. Stem cells differentiate in a certain proscribed milieu based on the presence of certain growth factors and signals from neighboring cells. Specifically in the case of the girl with optic nerve hypoplasia, you want these stem cells to become neurons and the appropriate supporting cells. There is no research to suggest that stem cells derived from cord blood are capable of doing this. We have no idea what growth factors would be necessary to make them make this transition.”

“While we don't know enough about the side effects of injecting stem cells into a person, we can reasonably expect some -- a number of the serious. Not the least is that in animal studies injecting stem cells into the animal can cause cancer. Stem cells are undifferentiated cells not that different from the cells that cause cancer, and it is a highly risky proposition to just put them in someone's body.”

“An autologous transplant would not be recognized as foreign by the immune system. Thus, an autologous transplant would be much more likely to cause cancer because of more limited immune surveillance. (…) You either acknowledge that immune cells are killing your transplanted cells -- rendering your treatment a sham -- or you acknowledge that you transplant poses a reasonable risk of cancer.”

http://scienceblogs.com/purepedantry/2008/03/stem_cell_injections_in_china.php

“Fourth and most dangerous are the pronouncements by some people that adult stem cells can cure any disease. This has resulted in a proliferation of clinics across the border and around the world that will, for a price, offer unproven therapies. People go to them for help without enough information necessarily to know what they’re getting. These clinics are unregulated. There’s no accountability to make sure they tell the truth. The treatments are so hyped that people are putting their lives at risk. We’re seeing cases of people who have gone to these clinics and come back with real damage”.

http://www.signonsandiego.com/news/2010/mar/22/stem-cell-cellsman-science-quest/

“…there is a long lead up of scientific research before a new biomedical technology becomes a reality – if it ever does. This often means that there is a long period of media hype preceding scientific reality. This has been especially true for stem cells, likely resulting from the ethical controversy and partial Bush Administration ban on stem cell research.

There are a number of clinics and companies around the world, but especially in

China

, taking advantage of this premature media hype, and the desperation of people with serious injury. They are offering stem cell treatments now, and claiming stunning rates of cures. At the same time they are offering zero scientific evidence to back up their claims. That is a formula well known to those of use who pay attention to health fraud – stunning claims combined with a lack of rigorous scientific evidence = fraud.” (…) “In fact, the greater the treatment effect being claimed the easier it would be to document scientifically. Large treatment effects and high rates of success can be documented relatively easily with relatively few subjects. So why haven’t they done so?”

http://www.theness.com/neurologicablog/?p=530

“…stem cell technology is simply not at the point yet where we can use them to cure such diseases. There are many technical hurdles to be overcome first – knowing how to control the stem cells, to get them to survive and become the types of cells necessary to have the desired therapeutic effect, and also figuring out how to keep them from growing into tumors. Basic issues of safety have not yet been sorted out.”

“…we don’t even know what the clinic doctors are injecting into patients and what happens to the cells, if any are even present. There are risks to the procedure without any evidence of benefit. And the clinic is not following standard ethical procedures for experimental treatments.”

http://www.sciencebasedmedicine.org/?p=614

“In the more far-out scenarios, if the totipotential nature of embryonic stem cells can be mastered, they could even be used to generate replacement organs for use in organ failure without the need for transplant and the attendant risk of rejection and need for lifelong immunosuppressive therapy. (…) But very little of this potential has been realized yet, and it will take years, perhaps decades, to determine what stem cells can and cannot do.”

“Because there's no way to control where the stem cells go once they're injected, they may end up causing more problems than they cure. Mice bred to have stomach ulcers, for instance, were shown to have a higher incidence of cancer formation at the site of the sores, because stem cells aggregate at those lesions. Adding more stem cells might increase that risk. (…) "Even when I do direct injections to the heart, the majority of the cells don't stay there," Patel [Dr. A. Patel, of the University of Pittsburgh Medical Center] says. "Once the cells are in your bloodstream, who knows where they're going to land."

“The bottom line is that stem cell research, although potentially holding great promise for many diseases, is nowhere near ready for prime time yet. The data presently available regarding its potential uses and efficacy come primarily from preclinical cell culture and animal studies, with the occasional human case report. Worse, we do not yet know the potential complications of their use, the worst of which may be cancer.”

http://oracknows.blogspot.com/2005/10/stem-cell-quackery.html

At this stage one might ask: if stem cells really don’t work, why do so many people come back from the offshore stem cell clinics validating the results, talking about all kinds of improvements?

Look at

India

on this photo. She was a bit sick last week and was sent home from school. The next day she was a bit better and she wanted to go for a drive and we went to Starbucks and bought her pink milk. As she was sitting there in her stroller, her daddy was holding her pink milk with a straw so that his poor sick baby could have a few sips. The ‘poor sick baby’ grabbed the glass out of daddy’s hand and she slurped it up faster than we could blink, jamming out to the music playing while she was holding the drink by herself. First of all, India NEVER, EVER drank a whole glass of anything unless it was literally poured into her by her caregivers to avoid dehydration; second, she absolutely never drank a whole glass of anything by herself, holding the glass by herself, and third, there definitely wasn’t any drinking while jamming to music! :-). None of these ever happened before. So, what caused this sudden, miraculous change in

India

’s willingness and ability to consume a whole glass of drink by herself? I have no idea, most probably a combination of several factors, but if I were one of the parents who took her to stem cell therapy last month, I’d have every reason to think that the ‘stem cells are working’ and they are responsible for this sudden, unexplainable positive change. Parents returning from stem cell clinics simply attribute the sudden, unexplainable, positive changes (which would happen anyway) to the stem cells.

Children with cerebral palsy, and in fact every kind of brain injured and non brain injured child has the ability to learn.

All kids sometimes demonstrate knowledge or abilities that we have no idea where they came from; and while in case of our typical kid we assume they just picked it up somewhere and we don’t put much thought into it, we somehow feel the need to find a medical, neurological, therapeutical, etc reason why our brain injured child picked up skills. The reason brain injured children learn is exactly the same why non-brain injured children learn: they play, they do things, they observe things, they participate in things, and sometimes things just fall into place all at once—learning is universal and it’s part of life. If we want our children to learn more, we should just allow them (and help them) to play more, allow them (and help them) to do more things, allow them (and help them) to observe things, allow them (and help them) to participate in things, and as a result, we’ll observe how things will fall into place—without any trips to stem cell clinics.

Happy Mothers Day

noreply@blogger.com (Viktoria) — Sun, 09 May 2010 17:36:00 +0000

Happy Mothers Day to all the wonderful moms!

"My mother had a great deal of trouble with me, but I think she enjoyed it." -Mark Twain

Heartless Vol. 2: The tale of the oxygen

noreply@blogger.com (Viktoria) — Tue, 04 May 2010 05:36:00 +0000

This entry is the second part of a series aiming to provide current and correct information about therapies for cerebral palsy. Read Heartless Vol. 1 http://conductiveupbringing.blogspot.com/2010/04/heartless-vol-1.html.

Oxygen is a huge business these days. It is easy to sell ‘oxygenated’ products–soft drinks, face creams and such—because generally people believe that oxygen is good for them and it’s the fountain of health and youth. Or…do they? There’s also a parallel, equally popular, equally woo-based group of products warning us of dangerous oxidative compounds, trying to sell us the latest anti-oxidants ("this week’s magic berry").

Now, is oxygen a friend that apart form breathing in, we also have to drink and rub into our skin, or is it a foe that starts oxidative processes in our body killing us with free radicals? It looks like the quacks can’t decide if more oxygen is better or less oxygen is better. They just market whatever sells, relying on the public not looking into their ludicrous claims.

It’s really not as simple as they make it sound. The air contains just as much oxygen as we need at just about the right pressure. Our body has astonishingly clever ways to make sure the oxygen we breathe in gets everywhere we need it in the right amount we need it. “Super oxygenated water” is quackery of the silliest kind, and is totally unable to “carry nutrients to your cells” or “flush toxins out of your body”. We can’t extract oxygen from water because we don’t have gills, and our digestive system is not designed to absorb oxygen—the oxygen from such water will never make it to our bloodstream. If you want more oxygen, take a deep breath, and your lungs will do the job for you, as that’s what they’re designed for. (1) Alternatively, go out to the fresh air and do something fun, like

India

on this photo!

The free radicals that are indeed oxidative compounds in our body, are not all bad because our immune system uses them to kill invaders, so all the "free radicals are bad for you—drink this anti-oxidant rich tea or juice" is an ignorance-based theory used to sell the teas and juices. The juices are (luckily) not able to destroy the free radicals in our body. (2)

What about Hyperbaric Oxygen Therapy (HBOT) for cerebral palsy?

HBOT is administration of pure oxygen in a high-pressure chamber. It is a legitimate treatment for certain conditions, 13 of them altogether. These include carbon monoxide poisoning (under pressure, enough dissolved oxygen is delivered to the tissues for the person to survive and the pressure also helps oxygen to displace CO from the hemoglobin); decompression sickness (HBOT allows the nitrogen dissolved in blood come out of solution slowly, without causing damage); anaerobic bacterial infections (the increased oxygen tension kills the bacteria), and a few more. (3, 4, 5)

Note that the contents in the brackets are plausible, accurate descriptions of how the treatment works: no guesswork, assumptions or imaginary processes are involved. That’s why HBOT is approved for these conditions. The reason it is not approved for cerebral palsy, autism, multiple sclerosis, spinal cord injury and the sort is that there’s nothing a lot of pressurized oxygen can do for these people.

Cerebral palsy is caused by parts of the brain being dead. The death of nerve cells in the brain is final, and no amount of oxygen forced into anywhere is going to cause a recovery from that, or improve the situation in any way. It is true that the parts of the brain died due to lack of oxygen; and if there was a way to deliver oxygen to the brain at the time when the damage happened, the cerebral palsy could have been prevented. But any time later is too late and will not reverse the irreversible.

However, when you google “Hyperbaric Oxygen Therapy” and “cerebral palsy”, the above information is clearly not what you find. You’ll encounter pages, pages and pages of woo: web sites advertising or selling HBO sessions or chambers, ready to convince you what an advanced science it is to ‘oxygenate’ brains in order to recover them.

Here is an example of ‘information’ these websites provide:

“Hyperbaric Oxygen Therapy (HBO) is a medical treatment that uses pure oxygen administered under pressure to alleviate hypoxia at the cellular level. The concept behind HBO for the treatment of anoxic brain insults is that of increasing oxygen delivery, and therefore, metabolic activity of inacative brain cells. After an injury or infarct, brain matter dies and is replaced by glial cells. The area around the gliosis, the peri-infarctional zone, appears as gliosis on scans, but may in fact be viable for years following the initial insult. HBO delivers high doses of oxygen to these peri-infarctional zone cells surrounding the dead neurons, and may be causing these cells to become metabolically active).”

This isn’t true. This is equivalent to saying that feeding chocolate cake to your dead grandma at her funeral may increase her metabolic activity and therefore bring her back to life, because despite your grandma being dead, she may be viable for years after she passed away.

Unfortunately, dead brain cells are not viable. Dead brain cells remain forever dead, this is how the world is put together. If there will ever be a cure for cerebral palsy, it will more likely be replacing damaged cells with new cells than awakening dead cells. (Miraculous stories of people coming back from death are always stories of miracle, not miracle supported by hyperbaric oxygen. If a miracle is bound to happen, it will happen anyway without the assistance of HBOT.)

Apart from such ‘scientific’ description of what HBOT does to the brain of brain injured people, some sites also link studies that are supposed to prove that this treatment causes a significant progress in various developmental areas. These carefully cherry-picked studies—without an exception—are designed in a way so that they allow result changing flaws. The various MDs who give their names to support the studies might just have financial interests in fabricating the ‘proofs’ since they’re selling the treatments themselves. One of the most ridiculous single-case studies describes the improved motor functions of an 18-month old child after a 3-month period of HBO treatments, measuring various skills before and after the treatment period. The problem with this is that ANY child, however disabled, will make improvements in the period between 15 months of age and 18 months of age. There’s no way to tell if any therapy accelerated the development or no without controls, and that is precisely why real studies always use controls. If controls are not used, one can ‘prove’ anything in the world: you can make a child wear pink socks every day for a 3-months period and measure their development before and after. There will be progress, so you can say that it was caused by the pink socks. That’s why most of the fabricated studies don’t use controls. When they do, the control group is just a group of children who doesn’t get any treatment, and they measure the outcomes using parent questionnaires. The parents who know their child got the treatment report more favorably of their child’s progress than the parents whose children didn’t get treatment. The researchers know very well that this bias will happen and is enough to create statistically significant results in favor of the treatment group.

The ‘science’ behind HBOT curing or improving symptoms of cerebral palsy is nonsense. However, the hype was (and still is) growing and growing. Despite the non-plausible theory, could there be any benefit to sitting in the chamber? There is a way to decide that; one just needs to conduct a real research study which is designed to rule out all biases and show us what really HBOT can do. This 2001 study included 111 children who were randomly assigned either into the test (HBO) group or to the control group that got placebo: they got to sit in the chamber, too but it contained slightly pressured room air only. Both groups got 40 treatments, and the parents didn’t know which group their child was assigned to. The children were measured before and after for gross motor function, attention, memory, daily living skills and speech. Both groups improved during the course of the study for all of the outcomes, but both groups improved the same without any difference between the treatments; slightly pressured room air did exactly the same that hyperbaric oxygen did. (Nothing, that is.) (6—abstract, 7—full pdf study)

The reason both groups made progress in all measured areas is that it's not the entire brain that is damaged in brain injured children, it's always only parts. The undamaged parts are perfectly capable to do what everyone else’s brain does: learn. Children always learn. If we want them to learn better we just need to teach them better.

Please accept your children for whoever they are. Your children are beautiful, they are sweet and they’re perfect. If you feel you would do anything for your children, then make them feel secure, loved, accepted, and teach them the best way you can. There is no hope in hyperbaric oxygen, but there is hope in the fact that every living human being can learn. The difference appropriate teaching methods make to the disabled child's life are much more wonderful than anything the quacks ever dared to offer. The miracle is the ability of all human beings to overcome everything that’s been thrown at them through love and the hard work of their teachers and themselves. That way they will be more likely to make the best of what they have and what they’ve learnt and live a full and happy life.

1.http://scienceblogs.com/insolence/2006/09/your_friday_dose_of_woo_if_our_intestine_1.php

2.http://www.sciencebasedmedicine.org/?p=294

3.http://scienceblogs.com/denialism/2008/10/breathing_102.php

4.http://www.sciencebasedmedicine.org/?p=249

5.http://www.nytimes.com/2009/03/10/health/10brody.html?_r=1

6.http://www.ncbi.nlm.nih.gov/pubmed/11558483

7.http://www.mild-hyperbaric-oxygen-therapy.com/articles/Hyperbaric%20Oxygen%20for%20Children%20with%20Cerbral%20Palsy-a%20Randomized%20Multicentre%20Trial.pdf

When nature has its way

noreply@blogger.com (Viktoria) — Wed, 28 Apr 2010 05:25:00 +0000

The human body is not designed to stay put. It is designed in a way so that it can move, change its position and change its place in a multitude of ways. The change of position and place are designed to happen more or less constantly at waking hours; in fact, we need to move quite a lot if we wish to stay healthy. If our body stays put for a long time for whatever reason, there will be consequences, and those can be quite severely bad.

A child’s body doesn’t automatically grow into a healthy adult’s body; our growth and development are shaped by our environment and our own activities.

If you ever had a ‘perpetum mobile’ toddler in your care who seemed to constantly run around and climb on everything that happened to be in the way, you have your picture about the amount and type of physical activity a little body needs to be able to develop and learn.

Children with injured central nervous systems have their bodies made from the same material as anybody else’s. Their bones and muscles, tendons, ligaments start up looking the same; but because the central part—that ultimately decides over muscle tone and every move—has its injuries, there will not be any or not as much moving around, running, jumping, riding bikes and so on as there would be without the injury.

The brain injury itself doesn’t get worse over time. However, it doesn’t go away either, and the inactivity persists and creates an array of secondary complications because no use or abnormal use of the locomotor system results in its abnormal growth.

(Inactivity causes secondary complications that affect all areas of learning and the development of the entire personality but I’m keeping this post within the topic of gross motor development with a purpose.)

Staying in the same position for hours on end will have a very unfortunate effect on development and learning. Staying in bad positions will have a devastating effect laden with deformity and pain. The former set of problems do not traditionally get as much coverage as teacher folks like me think would be necessary, but the latter set of problems are quite successfully taken care of in developed countries using braces, special seats, standers, exercises and a whole lot more, provided by PT and OT services.

While we can’t replace the damaged parts of the brain or grow new brain, not even a bit (regardless of what you may have heard elsewhere), following the recommendations of the professionals (PTs and OTs) can very well prevent our children from staying in bad positions that can cause their muscles to shorten, joints to loose their range of movements and deformities to further debilitate them.

There is also a way to avoid bad positions and staying in the same positions for extended periods: making sure that the children, however disabled, get to move around in all ways typical of children of similar age, with help if necessary, ideally both within their educational setting and at home. This isn’t provided via therapy services and these activities are not exercises. They are part of a daily routine of education and play that incorporates moving one’s own body in meaningful ways, replacing any kind of seats with wheels. This is provided in educational settings called Conductive Education schools, and any parent can provide it at home as a way of upbringing for their children. (I know of parents who provided such upbringing without ever having heard of Conductive Education, but this is rather rare.) Moving around is extremely effective for preventing problems that are caused by the lack of moving around.

What happens when there are insufficient services or no services to help prevent the preventable? In this case, nature, the cruel nature gets its way.

Here is an illustrated account of what happens:

This is

India

, who has cerebral palsy. Up until 3 years ago she regularly received intensive PT and also some (although only periodical) Conductive Education at various places.

Here are two pictures of

India

busy working with her PT. The PT did exercises with

India

which helped to keep her musculoskeletal system in a good shape. Whatever was too short and stiff was stretched, whatever didn’t move by itself was moved, and whatever was week was strengthened. Look at how wide

India

’s legs are opened while she’s sitting on the bench—opening the legs wide is a very good thing to do for someone whose legs are constantly pulled together by stiff muscles so close that they cross.

India

is standing in her walker on the second picture, in the middle of walking up and down a corridor with her PT’s help. Being upright and bearing weight stretches stiff muscles out, increases bone density, contributes to the health of joints and so on.

India was also able to support her weight and stand (for hours) when a person held her hands; she has even learned to take steps by herself if the person held her shoulders and transferred her weight for her before each step.

India

loved standing and ‘dancing’, and once she figured out how to walk she didn’t want to stop—she wanted to walk around and open every door and look what’s behind!

Unfortunately,

India

also participated in many other therapies (20 different therapies plus Conductive Education altogether) over the years, because her parents wanted to do everything on earth to help her. Now she was getting older, and her parents were realizing that despite some lofty claims none of the therapies will cure

India

. They were burning out emotionally from all the false hope and financially from travelling to the moon and back and paying out hundreds of thousands of dollars. Finally, the credit crunch hit, in the meantime her family was falling apart, so all of India’s therapies (quacks and legitimate ones alike) were abruptly stopped. Conductive Education stopped too.

India

ended up spending the next several months either sitting in her wheelchair or stroller (which is a necessity because of her inclusion in a mainstream school,—she has to get around somehow—or sitting on the couch at home while the world was happening around her, without her participation. She had been sitting on the couch in a bad, bad way with her legs crossed for many hours a day, for months and months on end. Shorty, abiding to the laws of nature and physics, her stiff muscles on the inside of her thighs pulled her legs closer and closer. Here is a picture of a child who seems to be comfortable and having fun on vacation, but this is just an extremely damaging way for

India

’s legs to be; a simple abduction device could have stopped this constant nightmare from happening.

While

India

’s legs always had the tendency to cross, they could easily be taken apart as the first picture shows—as long as it was regularly done. When it wasn’t done any more, her hip joints went through a permanent change so it couldn’t be done any more. As a result,

India

lost her ability to weight-bear and when after almost a year of doing nothing I attempted to get her to stand, this is how it looked like:

No more dancing, no more walking and looking behind doors. Her legs were crossing very badly and I couldn’t take them apart. When I managed to take them apart a little, she hissed in pain and immediately collapsed—she couldn’t bear her weight; she could stand a little on her left foot, but not even for a second on her right. She in fact was in such a bad shape that the slightest move was painful for her: she hissed when being lifted, carried, moved in any way. She woke up every night, crying and complaining that her knee hurts. Even the limited use of the stander at her school was discontinued.

Last summer when I moved in with India’s dad I declared that she was on the bottom of the slippery slope: I couldn’t get her body into any symmetrical position, her right knee was permanently bent, I couldn’t stretch it, there were hurting knees every night —but anyway, I started to teach her whatever I could every day after school.

I knew that the horrible suffering of this little girl would have been totally and entirely avoidable, have there been better services or at least better trained parents available.

This was 9 months ago. She’s come a long way, the little warrior.

Many people ask me if

India

is in pain or no when we’re doing Conductive Ed at home. She isn’t. Appropriate physical activity prevents pain, and doesn’t cause it.

Please note that there are no exercises in Conductive Ed and it is not a CE teacher’s job to make the children practice movements or any separate functions (there’s nothing wrong with those though, but they’re somebody else’s area of expertise).

The activities are very complex within Conductive Ed and every activity—playing with dolls, reading a book, spelling words, sorting and counting, etc—are carried out in conjunction with physical activities. A CE teacher always teaches to manage the entire body at any given time—that’s just the way it is. The complex activities are designed to be fun, engaging, and educational.

India

loves predictable routines and although I make sure she always knows what’s next and I do give her appropriate choices, she does always get upset when there’s something new. She screamed for a week when I re-introduced standing, but later she demanded that I hold her and help her stand because she wanted to dance! Re-introducing the walker 2 months ago was ‘interesting’, too, but now anyone can see how much she loves it. Pain isn’t the only single reason why children cry. They also cry when they’re freaked out and they do absolutely

cry when they've been taught and have successfully learned that crying is an appropriate means of communication that ultimately results in getting whatever they want.

I know that

India

would be much, much ahead if there wasn't an unfortunate break in her development. I’m not thinking about that, though. I’m thinking about the incredible improvement she made in the past 9 months and I’m blown away by the ability of her little body to come back from where she was. Needless to say, we haven’t heard her complaining about hurting knees for a long, long time. Watching her pushing her walker downhill on the street and laughing so loud is a pure delight.

Daddy's good girl

noreply@blogger.com (Viktoria) — Wed, 21 Apr 2010 04:27:00 +0000

Before you watch this video, I’d like to tell you that I’m a nice teacher and that I teach India good things and useful things.

So…the story goes that India never had a communication book before, and she spent a lot of time screaming out of frustration when people didn’t understand her and she didn’t get what she wanted. So I asked her Speech and Language Pathologist to make one for her, and we ended up making the book together last summer. This is now called the ‘Pink Book’ (what else?) and it’ the first thing India asks for when she opens her eyes in the morning.

While making the book, the Speech and Language Pathologist suggested that we put a “bullshit” symbol in the book. I couldn’t come up with any reason why not, and the symbol, featuring a drawing of a bull right in the middle of doing a poop, with “B.S.” written under it, is right there for India to use.

We went through the whole book with India when it was ready and she pointed at each and every symbol; I had to tell her what each of them mean before she proceeded to the next one. There was a grin on her face when we got to the “bullshit” symbol, but I didn’t think much of it. I was just happy that this child is about to give up her screaming and start communicating using more civilized methods. (India has plenty of words, but not many people understand her own special verbal language and she also has a Vanguard device that didn’t manage to become a part of her life and a means of communication for her; I’m working on changing that.)

I decided to ‘test’ her one day, I was curious if she still remembers the “bad word”. I opened the book, pointed at the “bullshit” symbol and asked her what it means. I also turned my camera on.

Here is her answer:

Heartless Vol. 1

noreply@blogger.com (Viktoria) — Sat, 17 Apr 2010 04:53:00 +0000

This is a picture of India lying under a magnet that was supposed to "accelerate the healing of her brain". The "therapy" cost around 10,000 dollars for 3 weeks' access to sleeping under the magnet overnight.

People are all different. They come in different colors and sizes; they come with different personalities, thoughts, behaviors, values and priorities and so on. However, the differences do not affect certain categories, for example there are no people who carry their heart in their leg instead of their chest cavity and even though we have different blood types, we all circulate blood in our veins and not something else. We’re not THAT different.

Disabled people are all different too, their disabilities are different and their disabilities affect their life and their family’s life in different ways. However, the differences do not affect certain categories. There are no people who are capable of growing a new limb in place of an amputated limb, and there are also no people who are able to grow new brain cells to replace the ones that died. We’re not that different.

There is currently no cure for cerebral palsy or for any condition that’s caused by permanent damage to parts of the central nervous system anywhere in the world. (There’s nothing wrong with the word ‘damage’, as long as it refers to the damaged parts only and not to the whole brain, worse yet the whole person!) None of these people can be cured regardless of how different they otherwise are. As cruel as this sounds, not knowing or understanding this unfortunate fact hinders acceptance and acts as an obstacle on the way forward. Acceptance of disability is the first step towards successfully addressing any difficulties that we encounter on the way. While people with damage to their central nervous system can not be cured, they are well able to learn, and they are well able to learn a lot more than we think. Life can be just as full and happy for anyone with a disability; they just need to be given the chance to do their best, without comparison to an able person’s best. We’re all different.

Acceptance is, of course, inherently difficult, and it is just the first step on the path (we can’t solve all problems of all disability just by merely accepting disabled people). The shock of finding out that our child has a permanent disability is horrific:

“It’s like a dream, a surreal event, which isn’t happening to me. I’m in disbelief, then in despair; I have no idea how am I going to deal with this and it’s terrifying.”

“I always held out for a cure. I have always hoped that within her younger years something would come together that would make a massive difference, not a pill, but a way of retraining her brain and muscles in order for her to be able to function well.

As long as I knew I did everything I could, I felt like it took a way form the debilitating feeling of having a disabled child.” (Donnie’s words)

That’s how they get you. You’re desperate, terrified, and hoping the impossible. You’re incredibly vulnerable. You just became the perfect target.

You become a target of the quacks the moment you’re in this situation. The doctor told you that there is no cure, but that can not be possible; there must be something out there that the doctor doesn’t know about or something new in a different country, just something, anything that could help your baby, no matter how little. It doesn’t matter how far away it is or how much it costs. You must try it.

Therefore, quack therapies of all sorts thrive. They promise the impossible, which is either a cure or at least some level of improved abilities or functions. Miracle cures and stories of miracle cures are everywhere; they are circulated on the internet and in every possible media and by hearsay. These stories are often very catching and emotional, describing parents’ journeys on their way to finding the therapy, often in a faraway country that made the very much sought after positive changes in their child’s condition.

None of these stories are true. The vendors and promoters of quack therapies do not base their claims on evidence as they do not have such. They use various cunning methods and refined techniques to convince all but the most skeptic that their therapies have a firm scientific base, or that they use the latest, cutting-edge scientific methods (they often put images of neurons and such on their web pages to create a sciencey look). Sometimes they base their claims on “ancient wisdom”, as if cures for brain damage were available at ancient times (?). They use fake or real titles (MD, Prof.) to increase their credibility (some titles are real as health professionals do become quacks sometimes for a number of reasons, mainly for the huge income quackery generates). They describe the way their therapy “works” using medical language and/or popular breakthrough-science key words like “stem cells”. They provide very convincing testimonials from their previous customers. It’s extremely difficult, if not impossible for the desperate parent not to get hooked on, regardless of how intelligent or educated they are, those aren’t even factors; all parents are uniformly holding onto the hope.

Besides the sites of millions of vendors on the internet we also find thousands of parent discussion forums, Facebook pages, TV talk shows, a wide range of magazine and newspaper articles and good old hearsay through which anyone’s very last doubts are eliminated that the miracle cure will work. These stories become possible because human thinking is biased by nature. Confirmation bias, wishful thinking, selective thinking, post hoc fallacy and such change the way we perceive and think, and when they come together with despair, the debilitating feeling of having a disabled child and desire to hold onto anything that offers the slightest hope, we get what we get: deception.

How does choosing quack therapies “judge” the parents? It doesn’t. The professionals who take their time to tell the parents the truth (that currently, in 2010, it isn’t possible to replace damaged parts of the central nervous system) know the above detailed working mechanism of popular quackery and would never even dream of blaming the parents for it. The parents aren’t doing anything wrong; they’re trying to help their child, which is the most respectable thing in the world. They are the victims, not the offenders. The “judgment” goes to the quack doctors who sell their useless treatment, offer false hope, and sell snake oil.

If your GP, neurologist or other professional take their time to tell you the truth, they’re doing that because they’re your friend, not your enemy. It’s not because of their difficulties with “getting along” with you that they would like to you know what’s real and what’s not, it’s because you’re in need of help and they want to help you. While you are the one who knows what’s best for your child, there is no way for you to bring informed decisions if all your research brought you results that came from the snake oil vendors and from deceived parents’ testimonials. Reliable information is scarce and you may never encounter any of it. This has nothing to do with you being ‘intelligent’ or not, being a ‘good parent’ or not or how much you love your child. You may have never been shown that there’s an other side of the story; you may have been lead to believe that brains heal and all you need to do is make an ‘informed’ decision of which therapy to choose for the ‘healing’. Those options are not real options, they are fake since you can’t win no matter which one you choose. Protecting you from quacks is a huge help, even if it doesn’t look like that first.

You may first feel that they’re taking your hope away. They’re not. The hope they’re supposedly taking away was never even there, there was only deception, lies and fraud. Offering people false hope and quack cures when there is no cure is unethical and potentially damaging to families in multiple ways: the ‘cure’ may be the administration of a dangerous substance that can cause serious health problems; the financial strain may become unbearable; the time spent on travelling to the other side of the moon for the therapy takes time away from the family and takes your child’s time away from living and learning.

Any time and money spent would be justified if the therapy had just the slightest potential to do the fraction of what they claim. Some parents well understand that there’s no proof that the therapy will work, neither do they require such; they expect that a miracle will happen because miracles do happen. That is true, and miracles, of course, happen. But for a miracle to happen you don’t need to buy into fraud first. If a miracle is meant to happen, it will happen without the assistance of dishonest quack doctors, and it can happen in your backyard, without the need to travel to China, Germany, or whichever country these folks managed to get around legislation to continue their questionable practices in the shadow. You don’t have to join the bandwagon in order to help your child or ‘wipe your tears off’, as one of the mommies put it.

Please accept your children for whoever they are. Your children are beautiful, they are sweet and they’re perfect. A ‘fix’ is not bound to come soon, not in their lifetime. If you feel you would do anything for your children, then make them feel secure, loved, accepted, and teach them the best way you can. The real hope is in the fact that every living human being can learn, provided that appropriate methods are used for teaching that work for them and help them learn. These methods differ greatly by individual and finding them and implementing them is not the easiest thing in the world, but if we do, the difference made to the disabled person’s life will be much more wonderful than anything the quacks ever dared to offer. The miracle is the ability of all human beings to overcome everything that’s been thrown at them through love and the hard work of their teachers and themselves. That way they will be more likely to make the best of what they have and what they’ve learnt and live a full and happy life.

An incomplete list of snake oil therapies (for cerebral palsy or conditions of the central nervous system; some of these may be legitimate for other conditions, for example HBOT is approved for the treatment of decompression sickness) contains Hyperbaric Oxygen Therapy, Magnetic Therapy, G-therapy, CranioSacral Therapy, Reiki, Homeopathy, Naturopathy, Ayurvedic medicine, herbs, diets, overpriced vitamins marketed for cerebral palsy, ABR, and the greatest offender stem cell therapy in any form whether it’s using embryonic, fetal, bone marrow, cord blood or rabbit cells, whether it’s injecting these into the bloodstream, spinal cord or brain (via drilling holes in the skull first…), and many, many more.

Stay away if you can.

Motivation in the bathroom

noreply@blogger.com (Viktoria) — Mon, 12 Apr 2010 05:58:00 +0000

This is a picture of India sitting in her dad’s office chair at home that she calls ‘black seat’, getting a ‘whee’.

What is a ‘whee’? India loves to be thrown around in the air, spinning and flying; she loves the rollercoaster at carnivals, the faster the better, and she loves spinning around in the black seat. I could start writing about ‘vestibular stimuli’ and the sort now, but I won’t, because for now it doesn’t matter why India loves these things. It’s enough for now that she does, these are in fact a total thrill for her, and it’s great fun even just to watch her having a whee because she shrieks and screams with glee and laughs out so loud you can’t help but smile.

We currently use the ‘whee’ in the black seat as a reward. India gets a whee every time she goes to pee into the toilet. She doesn’t get a whee when she wets her panties. This works so well that she rarely has any accidents at all, only when she watches some movie sooo very interesting that she completely forgets about herself. She’d rather pee into her pants then ask for the toilet; who on earth wants to get up when their show is on and it’s so very exciting?

India needs a reward because she otherwise couldn’t care less about panties and toilets. She was raised to be always wearing a diaper (nappy), and nobody expected her to learn to control her bladder and bowel. She ‘looks’ so disabled, surely she can’t learn such thing like peeing into a potty, can she?

Oh yes, she can. Most children with cerebral palsy can be potty trained, provided there’s some (any!) means through which they are contactable and can be communicated with. Words, signs, pictures, symbols, switches, a flick of one little finger or a blink will do. All we need to do is teach them and the earlier the better because India is now 11 and she has already very unfortunately learnt that she’s a person who wears a diaper. That’s the way she sees herself now. I’m helping her to change this ‘I’m like a baby’ self image of hers by toilet training her and having frequent chats about the matter.

We had to start at the very beginning, because India didn’t know much about the difference between diapers and panties; I let her pour a glass of water on each for her to see how the liquid gets absorbed into the diaper and how the panties become soaking wet. We had to discuss where the pee is coming from in her body and why do people pee at all. I explained her that big girls and big boys pee into the toilet and that she is a big girl now so I expect her to do the same.

India

, of course, had no idea first what exactly was expected of her. Then, I took a dolly and put it on a potty. While the dolly was sitting I managed to put some water into the dolly’s potty. After that I picked the dolly up, showed the dolly the ‘pee’ making sure that India can see it very well (the ‘pee’ left India a bit surprised but she was in for the show). Then I praised the dolly and I told her that she’s getting a whee as a reward for the pee in the potty, because I knew that India is crazy about a good whee. Then I started throwing the doll all around in the air shrieking ‘whee’ and pretending that the dolly was laughing and having a great time. Then I told India:” if you do a pee in your potty like the dolly did in hers, you’ll get a whee like the dolly did.”

There was a pee in the potty a few minutes after this, India got her whee (a big one!) and the giant step form zero to one was taken.

There were a lot of pees and whees after this, and a lot of accidents, too. I took India to the toilet very often at this stage. I took her every time before we started a new activity, before and after meals, to create a routine.

She now started to ask for the toilet (I still think she’s more interested in the whee, but she’s learnt that in order to get one, she has to produce a pee in the toilet first!) We also switched from the ‘regular whee’ when I held India and spinned around to the spinning in the black seat, which was entirely her idea.

The fact that India now stays dry most of the time and goes to pee into the toilet when we take her either by routine or because she asks proves that she indeed can be toilet trained; I have no idea what further proofs would be required to see the obvious.

I was once told that “children like her can’t be potty trained, because their brain is not connected to their sphincter muscles well”. Oh, yeah? One doesn’t need to be a professor to find out that the process of holding and releasing urine is a bit more complicated than depending on a single connection ‘between the brain and the sphincter muscles’; a quick Wikipedia search will do. Don’t worry, you don’t have to learn the exact physiology of urinating (unless you’re interested in such) for you to be able to potty train a child. I suggest you forget muscles and brains altogether. The physiology of urinating is almost entirely irrelevant when you’re potty training a typically developing child or a child who has cerebral palsy. If your child with cerebral palsy is not interested in potties and panties, just figure out something that motivates them to use the potty until they learn to do it for its own sake. Being potty trained through a reward that is otherwise unrelated to urinating is much better than not being potty trained and wearing diapers because in the first case the child learns control and develops a self-image of a potty/toilet user while in the second case the child learns that they have no control and develop a passive, ‘I’m in a diaper’ self image.

India has a long way to go before we declare her to be fully toilet trained, but she has already achieved a lot more than anybody ever expected her. While at home with us, India is a girl who wears panties and goes to pee into the toilet.

While at her mainstream school, India is a girl who wears a diaper and gets changed while she’s lying on a changing table. That’s two very different girls!

I explained to the folks at

India

’s school that she is being toilet trained at home and she almost always stays dry. Therefore, we put in her IEP not long ago that she has to sit on the toilet 2 times/day for a few minutes, but I was informed that she never goes. I’m not surprised; why would she go without her whee?

India

goes to a wonderful, welcoming, supporting school where she is surrounded with people (children and adults) who love her and respect her. However, there isn’t a soul in the school whose job description includes admitting the possibility that a child with cerebral palsy can be potty trained, working out ways through which this can be achieved (coming up with a motivation, either a similar one to the one at home or a different one), and implementing the routine. India’s teacher can’t leave the entire class and provide a whee or anything of the sort. Her OT and PT and others all do their own things with India, which are all very beneficial for her—while India is in a diaper. The two aides who change

India

’s diaper are very nice, kind ladies who are not trained to work out toilet training methods for children with cerebral palsy.

So, while everyone’s doing the best possible job at India’s school, she still remains two different girls: toilet trained at home and not toilet trained at school.

But what’s the use of the magical mainstream if the children don’t get to be seen by their peers for who they are?

Children like India who are well able to control their bladder and bowel are taught and learn that they don’t need to do so, and they spend their schooldays in the mainstream magic wearing a diaper. If we wanted to change this, who at school would have it in their job description to work out individual toilet training methods and implementing them?

I don’t know the answer but I and her dad are going to continue to teach India to use the toilet because she is well able to learn this. We don’t think it’s a good idea for children who can be toilet trained to wear diapers just because they have a disability.

If you’re a parent of a child who has cerebral palsy, I would like you to know that there’s a good chance that your child can be potty trained, too.

As a final note, it’s not going to be stem cells, or hyperbaric oxygen, or anything of the sort that teaches your child to be potty trained. It’s going to be you. The magic is not in the deception that quack therapies offer, it’s in you, your child, your family, and the special relationship you have and the love you feel.

More on eating

noreply@blogger.com (Viktoria) — Thu, 08 Apr 2010 03:47:00 +0000

India

didn’t used to be able to feed herself as she does now and as you can see it on the photos of the previous post ‘Hot Red Chili’. She used to be fed like a baby, sitting in her wheelchair, in her stroller, on the couch, etc, wherever. She sometimes joined the family while they were eating together, and she was sitting in a baby high-chair (until she completely and totally grew out of it!) and bits of food were put into her mouth by her parents. Her parents were good parents, because they didn’t let

India

to be gastro tube fed when the need for such decision came up; they thought it would be better just to feed her orally. They knew feeding orally would take a lot more time and effort but they were still willing to do it.

There’s nothing wrong with tummy buttons when someone actually needs them and their life, health, wellbeing depends on them but why force children to have them who are just as well able to chew and swallow without any more danger than the next person? It's hard to believe there are advocates for this but there are...This is a tough decision to make and

India

’s parents brought the decision that was right for

India

She can chew and swallow food that’s not too hard in consistency and is cut up into pieces.

After that her parents fed

India

who loved her food, her chili, her ice-cream…but they never thought that

India

could learn to feed herself. She was, at the end of the day, a poor little girl with cerebral palsy who couldn’t walk or talk or sit unaided; how on earth could she be able to feed herself?

India

used to periodically go to Conductive Education camps where she was learning to feed herself, but the ‘habit’ was never taken home or even given significant importance. There was nobody in the extensive crowd of

India

’s therapists and supporters who would have explained her parents that

India

doesn’t need to be fed like a baby all her life just because she has cerebral palsy.

When I moved in with

India

and her dad, she seemed to me like a girl who would be well able to feed herself, but is not very well used to the idea. I must admit it was very easy to teach her. The baby feeding was more like a habit thing, daddy fed her little bird and it was their special time. That ‘special time’ of theirs has since been replaced with different special times. There is really no need to leave a disabled child incapacitated just so that they can have special bonding with their parents; bonding can be taken care of in a million other ways. I wish there was someone who helped parents working these out.

While India could hold her spoon well, she had no experience with scooping food onto her spoon and at the beginning she often put an empty spoon into her mouth, wondering where the food was—no, she isn’t stupid, but things we take for granted are not that obvious for children who weren’t given their chances to experience all that we experienced when we were little. She was also experimenting a lot with turning her spoon this way and that way; she needed to see for herself that the food may fall off the spoon if she turns it upside down; we also went through some very messy periods when most of the food ended up on the table and various entertainment shows while India was holding her spoon in her mouth without holding the handle, pretending to be an animal with a long nose.

Since then,

India

has been learning to feed herself everywhere in many different ways. We usually have a family dinner when we all sit at the dinner table, where

India

sits with us on a regular chair that we adapted for her using a bedrest

J which is, of course, pink and very cozy.

She has also been learning to feed herself cheeseburgers from a paper bag or Happy Meal box in the car. That’s something, I figured, Americans do :-) so if the rest of the family does it,

India

should learn it, too. She needs to have her paper bag or box torn so that the sides are shorter, her cheeseburger to be taken into pieces and the bag or box to be put in her lap—then she can feed herself the cheeseburger, like her sister!

She can also eat pieces of pizza or other food she can pick up from a bowl or plate while she’s sitting on the couch, watching a movie (while on vacation)!

India goes to a mainstream school and she was baby-fed there, too, until very recently when I went to her school and showed her aides how to undo her shoulder straps on her wheelchair so that she can slightly lean on the table and rest her elbows there so that she can scoop her food and lift her spoon by herself. I was informed at the latest IEP meeting that

India

has been feeding herself after this event, so far. If it’s really that simple, why wasn’t there anyone to do the 10-minute job of showing the aide how

India

can feed herself before?

The folks at

India

’s school are doing a fantastic job teaching her and taking care of her, but surely there’s a link missing somewhere. Otherwise, why somebody had to come all the way from

Hungary

to show the aide that

India

can hold her spoon?

Well, various froms of 'integration' will be a pretty long post some other time!

Hot Red Chili

noreply@blogger.com (Viktoria) — Wed, 07 Apr 2010 08:42:00 +0000

India is a proper New Mexican. She LOVES hot red chili. If it's not hot, it ain't good! I share this passion with her. On this video, we're waiting for our chili and we're very impatient:

Then the chili arrives and it's sooo good!

This blog is pink

noreply@blogger.com (Viktoria) — Tue, 06 Apr 2010 04:30:00 +0000

This blog is pink as a tribute to India, who loves all things pink. When she decided she wanted her room to be pink last year, she was required (like any good kid who is brought up the conductive way!) to help (a little). Here is a photo of India busy painting her bedroom wall: