It is Summer time now and we enjoy basking in the warmth!  As lovely as it is for the brain injured child to experience the warmth of the Sun on his or her skin and to be outside without extra clothing – this time of year can present even extra challenges if the parents are not attentive!

The post below is not only important in the Summer but it may be one of the most important piece of information that you need for the optimal care of your CP child.  It can be immediately implemented as well.

The parents of thousands of children with brain damage have told us:  The child does not like to drink – and especially not water.

For the ABR Accessors who do the children’s evaluations – this is not a surprise.  Moreover the “song and dance” routines that some mothers and fathers have thought out in order to try to get their children to drink anything at all can be very amusing to hear – but it is not the main proportion of the parents who have developed these hydration routines with success. Unfortunately most parents will tend settle at the thirst level of the child.

The main thing that parents of a brain injured child need to keep in mind, is that once the child’s body is dehydrated, he or she does not feel thirst. So it is incredibly important that in respect to water intake and hydration, the parents do not feel inclined to “follow the child”!  Most parents will simply do this – and this is of course natural.  These children have so many problems and the refusal to drink seems to be rather small one in respect to the other difficulties on hand.  But especially in the case of hydration, the parent has to know that he or she knows best – and much better than the child!  Only the parent can regulate the intake of water for a child and especially for one who is certainly already dehydrated.

Water is the foundation for all life and it possesses dynamic qualities!

The parent needs to know and remember that water and liquid flow is the basis for all of the life processes taking part in the child.  At the same time, even a slight dehydration has an enormous cascade effect upon the entire bodily system!

• When dehydration occurs and the overall water volume in the body is reduced: this then results in a reduction in the central blood volume and, therefore also in skin blood flow!
• The decrease in the blood volume then causes a compensatory increase in the heart rate, which is then again followed by a decrease in stroke volume. This is due to the increased heart rate and decreased filling time for the heart!
• Remember that the heart beat rate increases! Many children with CP have tachycardia. Before giving the child pharmaceutical drugs for this condition – try to bring up the hydration level!

Water is essential for all of the life processes.  It is important to realize that the flow of the fluids within the tissues together with the capillary flow is the essential tissue stimulation required for all tissue regeneration and tissue renewal.  This fluid exchange movement known as “liquid shear” has a positive remodelling effect upon the tissues.  When the tissues dry out and the pathways for the more capillary located blood flow decrease, then the tissues will of necessity be locked into a process of slow and steady degeneration.  For a children with movement disorders the systemic reduction of tissue fluids is one of the leading factors which reduces the child’s general performance.  It is also responsible for an increase in joint stiffness and spasticity!

Enough written about the importance of water intake!   We could continue with many more aspects but the parents and caretakers should be able to see the connections between sufficient water intake and their own child’s health and development.

Some of the signs of dehydration that are easy to recognize are as follows:

• The colour of the urine is the most significant sign. Instead of being a light greenish yellow, it becomes bright orange yellow or worse yet dark yellowish amber brown.  When the colour of the urine is in this range it is a sign that the child has much too little to drink.  If the child is using disposable nappies, it may be difficult to discern the colour.  Here also the parent needs to be creative and perhaps use a cloth nappy in order to see the colour.
• Odour of the urine – if it smells this is a sign of dehydration
• If the child smells badly (and many children with CP have a bad smell) – this is also not a good sign! Healthy hydrated children do not smell.
• Dizziness and headaches. Most children will not be able to express anything about this, but they may certainly being having these symptoms.
• Confusion
• Dry skin, brittle skin or paper thin skin where one can easily see the bluish colour of veins

On the other hand, if one can achieve some diligence in getting the child to drink, the success of what may seem like a bagatelle can be shown in an interesting example of a child from Hungary.  The parents came with the child to a long pre-assessment where we found out that the child drank almost nothing at all.  In addition the girl had problems with:

• sleeplessness
• chewing and swallowing – it took half the day to give the child her meals
• drinking
• seizures
• mood swings
• restlessness
• attentiveness problems

Six weeks later we met for a further assessment before the family started with the ABR training.  At this meeting we found out that the mother had taken the recommendations we had given her to take the drinking seriously and had tried to increase the water intake up to at least one liter per day for a child of her small size.  The mother was fortunately able to get the girl to drink consistently.  Most amazing however was the long list of improvements that the parents told us about that had came about spontaneously during these short weeks simply through increasing the water intake!

• The child started sleeping through the nights.
• Constipation was relieved.
• She was much less restless during the day as well.
• The child began to be able to swallow and to chew almost normally!. The time taken for the meals was down to a normal time for a meal so that the child is now finished eating together with the parents.
• The seizure level decreased significantly and seizures almost disappeared.
• Motor function improvements
• Sound production
• Communication efforts

This story illustrates the extreme importance of good hydration for children with cerebral palsy.

The parents need to be encouraged to pay attention to hydration at all times!  Not one day should go by when the child has too little to drink.

If the child has been dehydrated for a long time – and this is the case of most children with brain injury – then it cannot be expected that thirst will simply be present.  The cells within the body have been used to a minimal liquid exchange.  It will take time for the introduced water to begin to move consistently through the system – but do not give up!

You need to be consistent and will also need to develop a strategy.

Some of the methods that work are:

1. Offer the liquids at least once each half an hour.  In this way the child will become used to having liquids in his body.
2. If there are issues with getting the fluids into the child’s mouth, try using a variety of cups, bottles, syringes or even spray bottles at first.
3. If the child refuses to drink, try using a syringe and find out where to bring the water into the mouth so that the child does not choke but can swallow it. Or use even a spray bottle and simply spray the water into the child’s mouth.
4. Make a realistic goal for increasing the liquid intake on a week-to-week basis. Increase by ca. 100 ml each week until one achieves the wished for daily water intake.
5. Taste can be important. If the water has some taste then the stomach will automatically react in such a way as to facilitate swallowing.  If the child simply refuses the water, then add a bit of non-sweetened juice or some soup broth.  Taste can be important assistant in swallowing and it may be necessary in the beginning to add something that has some taste.
6. There are several healthy foods that can be used as thickeners if all else fails to work. This helps the child who has much difficulty with the swallowing of water to be able to manage the liquids when they enter the mouth.  Agar, psyllium fiber or chia seeds can all be used as a thickener agent for water. Arrowroot can also be tried.  Xanthan gum is not to be recommended, as it is a more or less engineered food additive. ( read here:  https://draxe.com/what-is-xanthan-gum/)

Diane Vincentz
Director
ABR Denmark Aps

Every parent of a special needs child lends a particular notice and emphasis upon what is happening with the hands and the feet of their child.

On the one hand this is due to the fact that these are the most obvious areas of the body – they stick out! If the feet roll inwards, if the hand is shriveled and not useful for grasping objects, eating and playing – well then the parents and the therapists as well gather around this hand or foot. They try to stimulate the child to use it better, try to stretch it, try to massage it – anything to try to bring it to usage.

The ABR Method takes an entirely different avenue. First of all one works on understanding and recognition! One tries to go a few levels deeper into the evaluation of the difficulty of the “hand” or the “foot” itself – in following the present example.

What does a shriveled hand show us? The hand always leads back to the shoulder girdle and the neck. When one sees a shriveled or a hand with contracture there is no doubt that limitations can be found higher up in the vertical connections of the neck and spine. When the cervical spine is weak, then it needs to start to use and mobilize the arms and hands for stability. The arms then take over as stabilizers because the most important thing that needs to be done is to protect the neck and keep the head stable.

Movement teachers who have worked with children can surely remember having seen the following: A young girl or boy who runs with at least one arm bent and held close to the body. One may have asked oneself “What is this child doing? Why does he run like that?”

As soon as one recognizes that even an otherwise healthy child who runs with one or both arms bent and held close to the chest is doing this to protect the less obvious weaknesses in his neck – then the strange positions of the arms and hands of children with cerebral palsy and related conditions can be recognized for what they truly are at a deeper structural base: They are all the natural attempts to protect and to stabilize the weak connections between the head and the neck.

Or: If my head wobbles, because my neck is weak, I can then create stability for the neck by blocking the long horizontal connections of the arms that would otherwise create even more chaos for my wobbly head. Instead of allowing the horizontal connections of the arms to simply ruin any stability I can find in my neck, I will recruit them by blocking them to add some stability to my weak vertical neck connections.

This is the basic understanding of the shriveled hands, the folded hands, and the turned in feet. The special needs child has with an internal act of genius searched for ways to stabilize the head – or the pelvis/spine connections in the case of the feet – even if the attempt has not been effective and even if there are much more suitable ways of attaining head stability.

For the ABR inspired – and what could be called Bio-tensegral Informed Understanding – it is clear that it will be necessary to assist the child with folded hands and/or contractures of the feet at higher levels of the body starting with the vertical connections – specifically at the spine – before one can expect to achieve a meaningful change in the positioning or usage of either the hands or the feet. Any stretching, injecting with nerve poisons, orthopaedic interventions or surgeries will only have a limited and short term effect if one cannot manage to address the problem at the root.

On the other hand once the hands or feet have stiffened into a permanently poor position, they unfortunately become an additional liability for the child or affected adult. They have been trying to do the work of the weak neck or the weak pelvic connections for years and this has brought them into a state of permanent stiffening more commonly called spasticity. These spastic hands and feet however – do not allow the child to release any tensions generated through his daily life through the arms and legs. Normally a person can release an immense amount of tension through simply walking, doing something with the hands, or gesticulating when talking. The hands and feet of the special needs child – instead of being able to move, dance in daily movement and release tensions – end up being tension collectors and return built up tensions to the overly tense body.

Parents of special needs children know how the child is always getting tension – when she is happy and excited, when he is nervous, unhappy or in pain – tensions are exhibited in the legs, in the hands, in the jaw, in the neck –

A vicious cycle is implemented – and the child cannot exit on his own. It is here that the child need assistance from another side and he or she cannot bring this himself.

ABR strategy – in this case – is not only to strengthen the vertical connections at the level of the spine, but to reduce the negative effect of the feet and hand tensions. Tensions that build up and cannot be released have a long term negative effect upon the individual – leading to further stiffening, further fibrosis of the tissues, further discomfort – and so it goes around and around.

Newer ABR applications developed – like the power socks, the wraps, the Osteo-tapping, the “Reverse Squeeze” at the hands and feet – all these are designed to bring a release of tensions to the peripheral joints.

The ABR children have now been rewarding the efforts of their parents with faster attainment and new levels of grasping objects, eating on ones own, using the arms for weight bearing, standing independently.

We watch these improvements with joy and congratulate ABR families for their immense efforts!

Now that it is Summer, we wish to remind all parents of children with some kind of walking function of the great value of the backwards walking in the sand for children with gait difficulties. Whether they are walking with support or walking free, the backwards walking is the perfect active exercise for them!

When walking forwards a child or an adult  with gait problems tends to use the “falling tree” method for his  momentum. Because the person cannot control the weight transfer through the foot, ankle and knee, he or she simply lets the upper body fall forwards and then catches up with the feet. This is not the correct sequence of activation for the walking.

What is it that definitely does not help a handicapped child to improve:

•  parent uncertainty
• parent exhaustion
• parent remorse
• parent pressure (on the child)

What ABR can do for all parents of children with cerebral palsy, brain injury, genetic illness and other disorders is to give a deep sense of reassurance that lies in the knowledge of the developmental potential of each person no matter how severe the illness.

Every child can improve.

When you the parent become the driver of your child’s rehabilitation, your focus changes from “cure” to “development”.   Improvements matter, each increment of change matters.  You realize all this because it is happening under your own hands.  You observe how small increments of change accumulate and one day begin to bring huge transformations!  A “cure” does not happen from one day to another, but is a process that can occur over time.  You start to see that the unique thing about human beings is that they develop – they can transform and that development is the most essential aspect of childhood – and even of adult life.

It is a great tool – ABR Method – for child developmental promotion.  Having this tool in your own hands as a parent,  brings an immense satisfaction that ABR parents learn to cherish.

Diane Vincentz

From these adult individuals we could glean directly from the affected individuals themselves confirmations about many aspects of our basic ABR understanding and principles.

Those of you who have been following my blog for some months will have read the post called Hands and Feet:

https://abrdenmark.wordpress.com/2016/07/15/the-hands-and-feet/

This post is an illustration of the internal necessity for stiff arms/hands and legs/feet in children with cerebral palsy.  Stiffness of the arms and legs, hands and feet – or even of the stiffened open mouth – these are all natural reactions!

In that post, we expounded upon the idea that if any individual has a weak spine, the person will then search for the next best solution available in order to add more stability to the spine.  If the neck is weak, then one can stabilize the neck by stiffening the arms.  The arms are of course not meant to be used as spine stabilizers.  When they are stiffened continuously in order to add stability to the spine, then they will of course soon “remodel” in a stiffer fashion.  This “stiffening” of the arms is then popularly termed “spasticity”.  One does not need to apply the typical neurological reasoning in order to find the direct cause of spasticity.

This month in Austria when holding the first assessment for a young man who is studying to be a teacher with cerebral palsy I asked him:

“Can you try to stand on one foot?”  His answer was nothing less that a direct confirmation of what is written above:

“Yes I can, but I need to curl my toes.”

Toe curling is a creative way to clench and to stiffen the body in order to add stability!  If I clench my toes, I feel it all the way up to my buttocks and the pelvis –  but also the lumbar area gets tense!  What geniuses these individuals are!
Their body tells them automatically and intrinsically that they do not have the spine stability needed to be able to stand on one foot, but that, if they clench or curl the toes, then they will be able to mobilize more stability to make the standing on one foot possible.  They can compensate for the lack of the central stability that the vertebral column should be providing for by stiffening other areas.

So, Dear Parents:  The ABR message to you is to please stop worrying about the spastic legs and feet and the spastic arms and hands!  Stop fighting with them by stretching them, cutting the tendons and lengthening the muscles, and by injecting them with toxins!  You need to understand that your child needs these spastic feet, legs, arms and hands.  Your child is an amazing genius who has been able to sense and to navigate within his own weaknesses and has been able to find an alternative for what he does not have intrinsically.

That which he or she is missing intrinsically is sufficient stability of the Connective Tissue Based Architecture!  This is the internal support system that we use all the time at a very low cost.  The healthy persons are so used to this internal architecture that we take it 100% for granted, day in and day out.

It is only when we do not have it that we notice:  “I need to curl my toes in order to be able to stand on one foot.”

And now Dear Parents:  You can all re-assess your child’s movements and manners.  You can begin to see, to feel yourselves within, and to understand what is going on.

When your child opens his or her mouth wide each time he/she wants to lift or to move his head or raise an arm:  Now you understand why!  The wide-open mouth brings tension into the neck and the base of the skull and makes it easier for your child to control the head movement.

This is of course not the best way to do things, but this is what your child has figured out how to use.  Your child is not “brain deficient” but exceedingly smart.  If he or she has figured this out, then it is only a matter of diligence of application of ABR Techniques designed to strengthen the central core of the body, of the spine and of the internal connective tissue base that will in turn allow for him to find new strategies for lifting the head.  As soon as the central structures are strengthened internally, your child will not need to use his wide open mouth, or his arm stiffening to support the neck.

Before this internal strengthening is achieved, then any attempts to “loosen up” the arms or legs are not going to lead to longterm positive results.  It is comparable to taking away someone’s crutches when he needs crutches for walking.  No one would do this!  But yet we as parents of Special Needs Children are lead to believe that we need to cut, to inject, to stretch the very structures that our children need as crutches for their own central and internal weaknesses.

As all families, parents and clients soon find out, at ABR we take time to listen.  We listen to your stories, your struggles, your successes, your difficult and intense problems, and your journeys.

Not only do we use the information you give us to shape your ABR Program, to guide you on a day to day basis with respect to general health based insights and suggestions, but we can then let the information flow from parent to parent.  What works for one family, will often work for another family, so there is no reason to keep anything to ourselves?  Each small bit of information can be given further.

This kind of information coming from young adults with cerebral palsy is precious.  It confirms our understanding that we are on the correct path in the promotion of the ABR Techniques and Methods which are all designed to provide for internal intrinsic architectural connective tissue based strength and stability.

Diane Vincentz

ABR Denmark