Therapy

Brain Train & BIBIC

First contact
Four Aspects which Program Covers

Basic Principles of Brain Train Program
Exercises and intelligence program

FIRST CONTACTS

Somewhere in the winter of 2002 I found an interesting site on the Internet. On this site a program called “BRAIN-NET” established by Keith Pennock was explained. It was exactly what I was searching for! My husband and I contacted the foundation of “BRAIN-NET” in Holland and we had an appointment with Keith and Valery, his wife and co founder. When we spoke to them, we brought Dejana along. For a few hours we exchanged all kinds of relevant information. We wanted to know all about the stimulation program and they wanted to know all about Dejana. Also they observed Deja in her behaviour during these hours it was evident that this program could make the difference for our daughter, so we decided to make our first official appointment.

In March 2002 the combined assessment and parent course started. Keith, Valery and Judy, one of their daughters, taught us about the method with a lot of theoretical background. Dejana was assessed and the result of the assessment was presented to us in the form of her development profile. This profile would serve as the ultimate reference point and it is updated at every new assessment. It was clear that the thoughts and believes of Keith were very close to mine. I was confident that we had made the right choice!!! But I never could have believed that Dejana would respond so excellently to this program. The basics of the “brain-net” stimulation programme are presented in his book “Rescuing Brain Injured Children”, which I very much recommend to all parents and therapists who decide they want to know more about this unique intensive individual development program, or to work with it. Sadly Keith died very suddenly in January 2004 and consequently the ‘Alison centre' for brain injured children, named after Keith and Valery's first daughter, does not offer active assistance to the parents any more. However there are a number of people and organisations that worked together with “Brain-net” still working with very similar ideas in England, Australia, France and South Africa. I would like to say a few words in memoriam to Keith because we are very happy to have known him. His knowledge changed Dejana's life in a very positive and useful way.

IN MEMORIAM
Keith was a great enthusiast hard worker and a very creative and experienced teacher and therapy organiser. He was proud of Dejana's progress and believed in her possibilities, some times even more then we did. He proved to be mostly right. The Brain-net program does make a huge difference in the life of our daughter. It teaches her a lot of new and essential growing skills. It improved her motor abilities, her walking, her understanding of language and surroundings, and her responses. She learned to read simple words and she even climbs a ladder up and down. I am very happy to have known Keith and his team and I will miss his enthusiasm and support for our intensive therapy which we will continue. Thank you Keith for all the work you have done for us. It was great to know you!

BASIC PRINCIPLES OF “BRAIN-NET” PROGRAMME

The idea and working method of this intensive programme for stimulation of development of all potentials with children, has been taken from The Institutes for the Achievement of Human Potential seated in Philadelphia (USA), where it was applied for the first time in the sixties (20th century). Some of the parents, who were working with their children for many years under their supervision, later founded similar Institutes in their countries. Therefore, there are smaller centres in Australia, France, Italy and Great Britain. One of the parents was Keith Pennock, who had bought a small by-gone castle in a peaceful country near Bristol, full of greenery and clean air, and started working with great zeal accompanied by several similar enthusiasts.

The project soon developed and the British Institute for Brain Injured Child – BIBIC was founded, which still exists and works very successfully with a more numerous team. We joined the team after Keith's death. However, after several successful years of work at the head of BIBIC, Kieth Penoch became independent again and founded The Alison Centre using the programme named the Brain Train. His basic leading idea was that the programme defined for a child must be made completely individually, and in addition to it must be EXCEPTIONALLY INTENSIVE, otherwise significant results would be hardly achieved. As for this matter we are sharing the same views. I still think that this is the sole therapeutic method in the world which can stimulate development of Rett children and stop their retardation.

Therefore, the Brain Train is a stimulative, domestic programme based on THREE major principles:
- INTENSITY
- FREQUENCY
- DURATION
All three elements must be equally present in everyday exercises.

___ INTENSITY
means that we have to work at least 6 to 8 hours a day with the child we stimulate, and it must be done in such a way as to define the exercises which would be on the top of her abilities. The exercises are mostly short, lasting a couple of minutes each, and they are heterogeneous.This stimulates the child's brain in all aspects of development (motor exercises, speech, palpable, visual and hearing centres) and that is sufficiently strong for the brain to start registering all those stimulations coming from the outside which we are incessantly producing. This is very important for Rett syndrome children! They are naturally passive and only strong stimulation can move them to action. Just for this reason, this programme produces good results with Rett children. It is known that no other therapy at the moment can help. We have chosen this kind of therapy because we knew that:

Intensive exercising in no way means that a child is exposed to something hard and unpleasant. On the contrary! All these exercises simply exist to arouse the children in development and thus relieve them from many unpleasant things such as: contorted muscles, paralysis of hands and legs, stereotypical movements, epilepsy, constipation, scoliosis, crying attacks, inability of communication, etc.

Intensive exercising in no way means that we deprive a child love or we burden him with difficult demands. On the contrary! Each of the exercises can be practised through a game, song, rhythm, with nice and warm stimulating words, with great "bravo" at the end and with lots of love. Good, warm communication is a prerequisite of the success of each therapy and it is always possible to make a break with lots of caressing and relaxing. Children often love to do most of the exercises and take them as a game after only several weeks of therapy.
The kind of stimulation which is difficult for a child, can be done at the beginning with the help of adults, and later on more and more initiative is left to a child so that it finds the difficulty of the exercise imperceptible, and the success if more obvious. Assistance in exercising is called the PROMPT and its aim is to help a child in the right moment. At the same time the right moment must be sensed when such assistance can be withdrawn.For example, when Dejana was walking on the cubes of different height, we had to hold her hand sometimes, but in the next moment we would let her go by herself and then help her for a while again if necessary. This assistance should be reduced more and more in time and become rarefied because the aim of each exercise is that a child should do it independently.

___ FREQUENCY
means constant repetition of the same stimulus to be finally registered and adopted by the brain. In practice, that means that an entirely same series of exercises is done two or three times a day, then 5-6-7 days a week (according to individual abilities), incessantly until a new checkup at the Institute after several months. Frequency is important because sometimes the very intensity of the stimulus (exercises) is not sufficient to be accepted and learnt by a child having difficulties in development. It is often necessary to repeat the same thing many times until learning of mechanical activities (crawling, balancing, going upstairs...etc.) turns into a game and curiosity. Only then can we say that a child has overcome one more step in its development.
Mr Keith Pennock has very scenically explained that with a short anecdote: "Imagine a man sitting in a room and reading; then suddenly a drop of water from the ceiling falls on top of his head. At that moment, he doesn't even feel it. He will feel the next drop, and the third one will fall into his EYE... because only then will he realize where the stimulus comes from and he will raise his head."
That is briefly the essence of the incessant repetition idea until the nerve centre receives the sent information. That is why we repeat stimulus in the form of short exercises so many times until the brain which has difficulties eventually registers it.

___ DURATION
is the above mentioned intensity and frequency of practicing, distributed within a long period of time. Usually months are in question. Some children need six months (next checkup) to master the new stage in development, but it does not mean we should give up if a child did not show any progress. Obviously he/she needs 12 months of intensive work for the same thing, even two years of repeating the same exercises does not mean there is no progress. Also, it may happen, depending on the gravity of the syndrome, that some children at the beginning would need two years to set off the development process from SCRATCH, but after that they would need less and less time for every new stage. Nothing can be anticipated in advance, and it is very hard to forecast which pace and which way each individual child will take. My experience is that Rett children usually need a year or two of "warm-up" at the beginning, and it might seem to us that all the time they are at a standstill, but changes occur in their heads, small but significant, which will become visible later on.

The Brain Train programme is based on the experience and belief that the brain nerve cells could be regenerated and taught, and that they can overcome most of the restrictions which the brain injury created (genetic or mechanical). To say it briefly: Function – Determines – Structure. The documentation which they possess confirms that, however neither persistent work, nor extraordinary programme are a guarantee for every child. Everything depends on the line of conditions and on the problem itself, but I was sure in the success of this programme with Dejana from the very beginning, and the results were there.
First, the Brain Train programme starts with a stimulation of the most fundamental functions of an organism, and at the beginning the stress is not put on social activities of a child from a very simple reason that we must begin from control and understanding of our body in order to go on.

The sequence of programme development goes like this:

1- Physical and Psychological Growth– intensive tactile-sensory and motor exercises
(for severely brain injured: unable to move or make sounds)
2- Intellectual Growth – cognitive stimulation is added
(for moderately brain injured: able to move and make sounds)
3- Social Growth – simple rules of behaviour and different group games are added
(for mildly brain injured: walks and talks poorly)
4– Survival – final stage when a child is capable of functioning independently and satisfy his/her basic necessities without help of adults. After that, the child is at the level of a six-year old child and is capable of going to school and continue his/her development through learning i.e. MEMORIZING information. The programme ends there.

FOUR ASPECTS WHICH PROGRAMME COVERS

Since this is an extraordinary intensive training of different brain centres, then it is logical it must be given ideal conditions in which it can receive information, memorize them and use them later on. Therefore, the brain needs: optimal food and sufficient oxygen. From this reason, the programme includes, besides intensive, all day exercises, the following: nutrition + breathing stimulation of which I am going to say something more later on.

1 ___ BREATHING AND MASK
Excerpt from the programme:
“Of all the factors crucial to human life, breathing is one of the most vital… Althoug the brain in a male adult represents only 2% of his total body weight, it uses more than 30% of the total oxygen available. The brain of a 5 year old child requiers even more – about 50%. Thus, oxygen availability is a most important item for any human being. Some of our children breathe very poorly. They take in less oxygen than a well child; their breathing varies in both: depth and rhythm, and they are prone to colds and respiratory infections. Because of posture problems and lack of function, their chests are small and underdeveloped, and it is often a major effort for them to breathe at all…. We know that function determines structure, and that were it possible for the children to breath more deeply, and more often, the dimensions of their chests would increase, thus producing a bigger reservoir of available oxygen…. Deep breathing exercises, if carried out regularly, are known to increase the breathing capacity, as well as improving individual alerthness and efficiency. Unfortunately, many of our children are precluded by their physical condition from carryng out such exercises, or their level of understanding is too low to follow instructions. So we have to find another way…. This way is MASKING!….

Many years ago, it was discovered that CO2 was an excellent promoter of brain/blood circulation. In fact, it is probably the most powerful of all blood vessel dilators. Within 30 seconds of the introduction of extra CO2 into the system, there is a marked increase in blood circulation, and thus improved oxygen availability…. An increase in the amount of CO2 present in the bloodstream triggers of a requirement for more oxygen, and the brain’s response is to require an increase in breathing rate….Put in its most simple terms, masking has both a long term, and a short term effect. In the long term, it helps to produce a bigger “tank” of available oxygen. In the short term, it helps to increase the size of the “plumbing”!

Naturally, as with every technique we use with our children, there are strict rules for masking. Before any child is masked, he has a very thorough medical examination, and if Doctor finds any contra-indications, the technique is not used…. In the last 25 years, masking procedures have been employed with over 1400 children, and technique must have been used by parents several milion times. There has never been one instance where a child was hurt by this procedure.
Mask- Copyright Brain-Net 1996

We have done about 20 masks a day with Dejana and each one lasted exactly ONE minute. During the period of two year exercising, there was no single problem, but we could frequently notice that the mask reduced fatigue, and sometimes increased concentration, particularly at the beginning – during the first couple of months of the therapy. Dejana still has no problem with breathing, neither she has hyperventilation, so characteristic for the Rett syndrome. We reduced the use of mask, because Dejana could now breathe deeper during her activities. By the way, at four checkups we had at the Alison Centre, her chest circumference (and her lungs too) was developing well, and the percentage was even higher than with a normal person of her age. Dejana used to bear the mask extremely well, she did not refuse it, nor protested it, except in several occasions when she was obviously not in the mood. Otherwise, the mask should be used very carefully and must be removed the very moment a child shows a resistance, even the slightest one. It should help a child, and not to be a burden, and should be used only that way. (One of the photos shows how this exercise should look like).

2 ___ NUTRITION
At the Brain-train Alicon Center, we learned that:
A- A good neurological environment cannot be obtained without a good nutritional environment.
Therefore one has to take very good care about the quality of the food.
B- A constant supply nutrients, through food and vitamin supplements, is necessary
because many of our children suffer from malabsorption (poor brain function).
C- Our children, and our parents, need additional diet supplements to cope with the added stress
of SUCH INTENSIVE programme.

We allso learned what good nutrition means: food that retains its natural value with nothing added and nothing taken away. Unfortunately, nowadays the food that we buy, unless you can buy organic food, or grow your own, has been through a lot before it has reached our plates. Our meat is fed on antibiotics and hormones, our vegetables are sprayed with pesticides and chemicals, and artificially produced additives, preservatives and flavourings are added to make it look more tempting for sales. As a result food and chemical allergy or intolerance has become a primary cause in Western society. The most common allergens are: wheat; dairy products, sugar/chocolate, eggs, yeast, soy, corn, tea and coffie.

So What Is Good Food?
There are six main nutrients we have to consume every day:
carbohydrates, fats, proteins, vitamins, minerales and water, which we need:
- to provide the body with heat and energy
- to provide the body with material for growth and repair
- to assist in regulating the body's processes
All red meat and NO fish or white meat (e.g. chicken) is NOT balanced.
All cereals and NO green vegetables is NOT balanced.
Too much of any one type of food is not balanced.

DO'S and DON'T'S
It is very important to:
- Follow a whole-food diet that is prescribed and trying to make NO exeptions
- Eat nothing to excess
- Supplement the diet with vitamin and mineral SUPPLEMENTS
- Avoid ALL processed foods
- Avoid any food containing E-numbers, flavourings and preservatives
- Avoid white sugar, white bread, processed cereals, sweetend soft drinks, saturated fatty acids
- EAT NATURAL FOODS
- Do not overcook vegetables. Important aspect to consider is how we treat our home grown or organic food once in the kitchen. Anything that happens to the food reduces its nutritional value - peeling, boiling, freezing, re-heating. The best way to retain nutrients in vegetables is steaming.
- Read the labels
- Eat breakfast like a King, lunch like a Lord, and supper like a commoner!
- Do not smoke in front of a children
- Do not use aluminium pans, or foil. It has been found that they leak aluminium into the food which is been attributed to causing Alzheimer's disease.
Mask- Copyright Brain-Net 1996

DEVELOPMENT PROFILE

During the first days of our visit an assessment of Dejana's possibilities was made. She was compared with healthy peers during a number of tests. Her specific level of development for each of the fields was noted and compared with the appropriate level of her healthy peers. This resulted in a development profile for Dejana. This profile includes different attainment levels in healthy children’s development from birth, till six years old. Special emphasis is given to the three sensory - and three motor skills. These include: visual, auditory and tactile development, as well as mobility, language and manual competence. It is possible that a child achieves a higher level in any of the fields, but that it still misses basic steps from the early development. For example: In auditory development, Dejana was able to hear and understand single words, which is normal for a child that is 12 months old, but at the same time she was not able to give the vital response to threatening sounds at all. To say it more simply: she could hear words, but it looked like she did not hear the very loud noise of a truck horn that was blown 1 meter from her ears. It was funny and strange when they tested her in the play room with a sudden threatening loud sound of the horn so hard that most of us were in shock, but she did not even blink with her eyes. It was not because Dejana could not hear at all, but because her auditory brain centre had not developed yet, she received sounds from her surrounding selectively.

After 1 year of exercise, she responded very well to loud and threatening noises. At the same time, her responses to different sounds in her surrounding improved a great deal, and she started to be more curious when she was outside, which gave her lot of new opportunities to discover the world of fun and sounds around her. She turned her head more and more to see a cat miauwing, a dog barking, a bicycle bell ringing, children shouting… etc, which stimulated her development even further. But, to turn back to the development profile! When the tests on a child are completed, Keith’s team filled in the table with the results. There were three grades in each developmental level: perfect, imperfect and absent.

Perfect means that the child shows possibilities equal to her healthy peers.
Imperfect means that the child does respond, but not well enough,
and no matter how far she is, she will get exercises in that field
to practice untill her results become perfect.
Absent means that the child cannot do anything at all in the field.

The profile has 8 vertical levels that include developmental growth from: birth day, three months, six months, one year, one and half year, three years, six years and the general peer level for children of 6 years old. On the left sides are tree columns that include: Auditory, Visual and Tactile (for left and right hand) development. They are called: SENSORY input. On the right side were also three columns: Mobility, Language and Manual competence (for left and right hand). They are called: MOTOR output. In each of the six columns there was one main achievement test for every stage of normal development.

When Dejana got her own profile, completely filled in, our long and hard climb could begin. We were given a set of exercises to do two times a day, seven days a week, seven months in a row, before we would go to the Allison centre for our next assessment. And that was not all. We got to work out her new diet, a lot of single exercises and a great deal of advice and tips for daily life.

3 ___ PATTERNING
This is one of the most important parts of the programme. There are 4 kinds of patterning. They cannot be mixed. Only after the child has mastered one kind and has reached a higher level of gross motor skills the next variant can be exercised. The excersises last 5 minutes, the child lays passively on her back while we help her to rhythmically move her legs arms and head in the right order and the right position (simulation of walking).

Below you find the exact description from the book “Brain Injured Children” by Keith Pennock:

“Patterning is a term we use to describe a series of physical movements carried out on many of our children, by teams of up to 5 people. There are several different movement patterns, and each is aimed at stimulating a different brain area, in order to encourage different levels of co-ordinated movement. The choice of a specific patterning technique depends on the needs of each individual child, and is a primary tool in teaching the brain a particular function where this has not yet developed or has been by-passed. All patterning is passive in nature. The child is not required to do anything, as the whole principle of the activity is to present a series of related bits of information to his brain for storage… As a technique patterning offers several additional benefits which are extremely important to some of our children:
- it enhances tactility, and thus body and limb awareness
- at higher levels, it improves balance through the regular stimulation given to the inner ear by turning of the head
- it can give visual stimulation, when targets are placed on each side of the table
Patterning is designed to teach the brain how it feels to move in a variety of different ways.
Copyright Brain-Net 1996