Monday, 26 July 2010

A Biography of Snowdrop

The idea of Snowdrop has been in my head since 1988. My own son, Daniel was born the year previously and due to medical and midwifery incompetence and dereliction of duty which beggared belief, he was born with brain injuries which according to medical opinion, placed him in the most severe 5% of cases. All we knew at the time was that we loved him and wanted him to live, despite the fact that he wasn't expected to reach his first birthday.

Within a few weeks of bringing him home from hospital it became clear that his problems would be overwhelming and that he would be totally dependent in every way for every aspect of his care. It also quickly became apparent that the medical and other health professionals were simply not able to make any impact upon his problems and that we would have to search for solutions elsewhere.

With a child who was obviously going to quickly deteriorate, - his spine already beginning to bend like a banana, we frantically searched for solutions. Conductive Education was the big thing at the time, but when we enquired they said that Daniel's condition was too severe and that because their approach depended upon the use of language, Daniel's lack of language comprehension precluded him as a candidate for treatment.

We were in a state of desperation, when on Daniel's first birthday we visited the nurses in the special care baby unit, which was having an open day. These people had done the impossible in saving our son and we wanted to say a proper thank you. It was in a discussion with them that one of them mentioned the 'Kerland Foundation' in Somerset and that they ran programmes of developmental stimulation for children like Daniel.

We investigated Kerland, (now the Brainwave centre) and a few weeks later we embarked upon one of their programme. We worked for three hours per day, six days per week and had groups of volunteers trooping in and out of our home on a daily basis to help with the programme. It was hard work, but we did see some progress, particularly in Daniel's spinal deformity, which was rapidly improving. This was due to an exercise where we would hang him upside down, suspended from a hook with straps around his ankles and would slowly spin him.

During this time I was forced to abondon my career as a chemist in the ceramics industry because it became obvious that Daniel's problems were to severe for Janet to cope with alone. Apart from anything, the poor little mite never slept and we were reduced to grabbing a couple of hours sleep in shifts, whilst the other watched over him. At this time I began a degree based in psychology and child development in relation to children who have special educational needs at Manchester University and this began to arm me with knowledge. There were several of my lecturers, who once they knew why I was there, took me under their collective wing to point me to relevant sources of information and advice. This was useful, because I think one of the terrible things which happens when you have a child with a developmental disability like cerebral palsy, is the 'loss of sovereignty' which the family experiences. No longer are you able to make your own decisions concerning your children, but instead you must listen to some faceless wonder behind a desk, who calls himself doctor. - He will tell you what you must do. My increasing knowledge slowly but surely eased this control back into our own hands.

For two years we carried out the Kerland programme, seeing some improvements in some areas, but in many areas we saw none. It was then that we decided to leave Kerland and to try something a little more radical and to take Daniel to the 'Institutes for the Achievement of Human Potential' in Philadelphia. We were thankful to Kerland for what they tried to do, but it was obvious to us that if we were to have a major impact upon Daniel's brain injuries, that we needed to act more radically.

It is only now, knowing what I know about Kerland and it's successor organisation, Brainwave, that if I was asked the question, - 'If you had your time over, would you decide to take Daniel there again?' I would say 'NO.' Kerland at the time, was run by Trevor England, who seemed like a nice guy, although he came across as a bit of a 'wide boy.' At the time, we trusted him, because he seemed to be running a very professional looking clinic, in a very nicely set up facility. We were later to find out just what kind of person he really was when he was jailed for 6 years for fraud, for syphoning off hundreds of thousands of pounds from the children's charity he had established, into his own pocket!http://news.bbc.co.uk/1/hi/england/manchester/6732337.stm When I think of all the money we donated to his organisation, it makes me very angry.

I know if we had all this knowledge beforehand, allied to the knowledge I now have concerning the qualifications of some of the staff there, we simply would not have taken Daniel to Kerland. 

It would be about this time, towards the end of my first year of university that I began to think that I would one day like to help children too, but I still had much to learn.

During our time between attending the Kerland clinic and our decision to take Daniel to the States, we continued to work with him, but using some techniques we had devised ourselves from things I had learned on my child development courses. They were theories proposed by neuroscientists like Bryan Kolb and Ian Wishaw, which I adapted to treating Daniel. One of the most remarkable things we noticed during this time was a complete change in his visual ability. Within a few weeks he had gone from being functionally blind to being able to follow a person across a room. We were both surprised and ecastatic, as was Daniel's paediatrician in the sudden change in his vision.

So, of we went to the United States. On the 2nd of December 1990, we found ourselves sitting in the 'Valentine Auditorium' at the Institutes having booked ourselves on the week long, 'What to do about your brain injured child,' lecture series. This was a prerequisite for parents to attend prior to actually taking their child to Philadelphia for evaluation. Apparently, the course of lectures would arm us with sufficient information to be able to go home and devise our own programme for Daniel. So there we sat, alongside approximately 100 other families attending the same course, having left our children at home with relatives, in the hope of learning something new to help Daniel.

Much of the week's lectures were a repetition of the materials in the book of the same title and I came away feeling a little cheated that we each had paid hundreds of pounds in course fees and further hundreds in travelling and accommodation expenses, to listen to what we had already read in the book! I did however get to meet Glenn Doman on several occasions and he seemed to like us, singling us out time and again for personal attention. This motivated us to go home and try this programme with Daniel. Before we left, we applied for an appointment to actually take Daniel to the Institutes and were told that they would be in touch presently.

We came home and devised our own programme based upon the material in the book and the small amount of additional material we had gleaned from the lecture series. We worked for six hours per day, seven days per week and before long, our appointment to take him to the States was confirmed.

It would be about this time in 1991 that one of our local doctors visited and said that they would like to carry out a 'Statement of Special Educational Needs' on Daniel with a view to sending him to school. Now Daniel was clearly not a candidate for a classroom and from what I had learned at University about the state of provision of SEN in the UK, they certainly were not going to send him to school. (from the stories I still hear it has not improved much since)!
Some advice of relevant lecturers at University soon pointed me to the relevant legislation. It came in the form of the 1944 Education Act which states in section 36

Duty of parents to secure education of children of compulsory school age.

The parent of every child of compulsory school age shall cause him to receive efficient full-time education suitable—

  1. to his age, ability and aptitude, and

  2. to any special educational needs he may have,
either by regular attendance at school or otherwise.”

In legal terms, the key word is 'otherwise.' which meant that the programme we were carrying out, which they hated us for, counted as an educational approach which was 'otherwise' than at school. We consulted our solicitor, who wrote to the doctor concerned stating that us keeping Daniel at home was perfectly legal. They were furious, because they saw the statementing process as a way to impose their agenda upon us. They failed!

In June of 1991, we were invited to take Daniel to the Institutes in Philadelphia. They were sufficiently impressed with the efforts we were making to invest their time in us and we were invited to enrol on the 'off campus' programme. This was one below the highest level of programme, which is the 'intensive treatment programme.' The difference between to two, (apart from cost) was that on the intensive programme, the Institutes staff wrote a programme, which covered every waking minute of the child's day. In the 'off campus' programme by contrast, the Institutes staff directed us on what activities needed to be done, but the level of intensity was determined by ourselves. Only families who achieved a high level of intensity on the 'off campus' programme, would be invited onto the intensive treatment programme.

The programme we had devised ourselves from the information in the book and our attendance at the lecture series was going quite well, - Daniel seemed more aware and there had been an eighty percent decrease in his epilepsy, so we decided that we would accept their invitation to take Daniel to Philadelphia.

When we arrived at the Institutes, we were met by a very austere atmosphere.  We were in a huge gym like room with many other families and were expected to continue Daniel's daily programme under the watchful eye of the Institutes staff. This was quite intimidating! We were called into various rooms where staff who specialised in different aspects of the programme would question us and evaluate Daniel. Now my studies at university were still in their infancy, but I had now done sufficient general reading to determine that Daniel was displaying symptoms of injury to his lower brainstem. When I mentioned my theory to the Institutes staff, they scoffed at it, saying that children who are injured in the lower brainstem invariably do not survive and that I was mistaken. It was here that the first seeds of doubt were sewn. My doubts increased because when we entered a room to have Daniel evaluated by a particular member of staff, we were expected to place Daniel on the floor, on his tummy at all times. As we were chatting to this particular woman, Daniel vomited! This meant that he was now face down in a pool of his own vomit, which we considered to be dangerous. As we moved to rescue him, she screamed at us to “leave him!” - her thoughts were that if he were uncomfortable it would motivate him to move. We were disgusted and moved picked him up regardless. She was not happy with us!

We came home from the Institutes to carry out the programme they had prescribed and vowed we would do it to maximum intensity, so that we would be invited onto the intensive treatment programme the next time. There was a niggle in the back of my mind however. I was convinced that Daniel was displaying symptoms of lower brainstem injury, at the level of the Pons. The Institutes totally refuted this. Who was I to argue? They were the experts, - or so I thought.

With the knowledge I now possess, I know that the approach of the Institutes is nonsense based upon easily disproveable theories. I also know that the qualifications of Glenn Doman are not what I thought.

For instance, the Institutes claim that the brain is organised by what they call 'individual sequential development.' This means that the brain organises from the bottom upwards and that this means that until the stage next lower in the brain is organised, the stage above it does not begin to do so. What absolute poppycock! This would mean that the cerebral cortex organises last, but we know and can prove that the cortex exerts a controlling influence from birth. Having had one of their major theories exposed as nonsense you would think they would throw it out, but no, they stoically hang on to it. Janet Doman, who is now in charge at IAHP, recently claimed that at birth a baby is functionally blind. This is nonsense and I told her so. We are able to determine the visual ability of a newborn and we know that he uses his vision is quite a sophisticated way.

Knowing what I now know, I would choose not to take my son there. Glenn Doman was a qualified physiotherapist, who was awarded an honorary doctorate by the university of Plano.   The University of Plano moved to Philadelphia in 1973 to become part of the Institutes for the Achievement of Human Potential. So it seems that 'doctor' Doman has only an 'honorary' doctorate which in essence was awarded to him by an institution which was part of the Institutes! The evidence, - look here! http://www.pmo.gov.my/ucapan/?m=p&p=sitihasmah&id=2027 and here, http://www.tshaonline.org/handbook/online/articles/UU/kcu4.html 

We carried out the Institutes programme for 8 hours per day, seven days per week and what we noticed was not good. Daniel began to react very badly to the level of intensity of the programme. Both his vision and his hearing became exceptionally hypersensitive and as a consequence within a few short months, we had to stop. Daniel would throw a massive over-exaggerated startle reaction at the slightest sudden noise, such as the creak of a flooboard or someone coughing or sneezing and this reaction would normally then turn into a seizure. I felt sure that this was because we were addressing the wrong part of the brain and that the injuries which I percieved to be in his brainstem were the cause.

We trawled all of the sources of information we knew of, (there was unfortunately, no Google in 1992), to find alternative therapies which might suit him, but it was the advice of a friend which led to our next adventure. They had taken their son to see Carl Delacato, at his clinic in Antwerp, Belgium and recommended him highly. I knew Delacato used to work at the Institutes with Doman and decided to investigate further. It seems that Delacato split from Doman in 1974, - I am not quite sure what the reason was, but I do know that Delacato became fascinated with what the world likes to call 'autism' and that his theory was that autism was caused by massive sensory processing difficulties experienced by the child. This is detailed in his book ' The Ultimate Stranger. - The Autistic Child.'

His theory has stood the test of time, indeed part of my own work currently is based upon an extension and deepening of his theory. I think we now know that issues of sensory processing are only one piece of the jigsaw which is autism, although a very important piece.

In June of 1992, we took Daniel to see Delacato in Antwerp and we were not disappointed. Besides being an absolute gentleman and being the first real alternative therapist we had seen who was appropriately qualified, he instantly understood Daniel's problems, marking him down as being hypersensitive in every sensory modality.

Delacato's clinic was not glamorous, like some of the centres we had been to, - indeed he was working in a disused factory and office block, which had been donated for the ocassion. What was important wasn't the bricks and mortar, it was the knowledge contained within the building. I noticed that in one section of this falling down building, someone had constructed a Faraday box and I knew this could only mean one thing, - they were going to give Daniel an EEG. This would be interesting.

After he had undergone his EEG, Delacato's neurologist called us into his room. He explained that Daniel's EEG graph was most unusual, - that yes it showed clear signs of cortical disruption, but in reading into the graph he had potted something else. He said the only explanation for the electrical activity he was seeing was that Daniel had sustained an injury to his lower brainstem! I knew it! This is what I had been saying all along and he was the first person to recognise it. I could have kissed him.

Delacato sent us away with a programme designed to stimulate Daniel's development and to calm down his hypersensitivity. It had little effect upon the former, but huge effect upon the latter.

I was now in my final year at Manchester and I had to produce a 30,000 word dissertation in the subject area of my research, which was in psychology, child development and special educational needs. The area I opted for was reflected by my title of “Programmes of Rehabilitation for Brain Injured Children.” However first I had two major areas of research still to cover, namely the approach sponsored by the British Institutes for Brain Injured Children and the final one, - Conductive Education. For the first, I was to spend some time at BIBIC who to give them credit, welcomed me with open arms and for the second, I was to spend time at a major special school in Staffordshire which was utilising CE under the supervision of conductors from the Peto Institute itself.

My week at BIBIC was good. I was mentored by the founder himslef, Keith Pennock, who was on that particular week hosting a group of families from Poland who had brought their children over for therapy. I attended a mixture of lectures and practical sessions and was encouraged to ask questions. What I did notice, was that BIBIC were almost identical in every aspect of their approach to the Institutes in the US. This was not surprising as originally Pennock had established it as a British offshoot of that organisation after taking his own daughter to Philadelphia. Today of course, it is totally different.

One of the lectures I attended was around the subject of 'oxygenation of the brain and muscular stiffness,'  BIBIC proposing the theory that the muscular hypertension experienced by many of our children is produced by a lack of adequate oxygen supply to specific areas of the brain. Knowing a little about this subject since my time at university, I wondered how they came to this conclusion, with no evidence to support it. To be truthful I was beginning to doubt the level of knowledge of BIBIC and started to ask one or two testing questions, - not in public, but in private. I remember the look on the face of a senior member of staff when I asked him, “How are you able to determine which area of the brain is responsible for producing muscular stiffness in a particular child and how do you go about adapting your treatment accordingly?' I saw him stiffen and he spent what seemed like an eon in silent contemplation and then he said, “We just do what we do!” He didn't know! 

My week at the special school in Staffordshire was also most illuminating, spending a great deal of time with the conductors from the Peto Institute, observing them and questioning. I quickly realised why the treatment would be unsuitable for my own son as they explained that it is an 'educational approach' and not a form of therapy. As a consequence it is led by language and as Daniel did not possess any spoken language, that was it! I was very impressed though by many facets of the system with the children who were suitable candidates, particularly how they utilised the dynamics of the group to encourage individual success and how they taught the children to use language in order to control the developmental functions they were trying to learn.

I graduated with upper second class honours in the summer of 1992 and was told that if I had scored three more marks I would have gained a first. How frustrating! More importantly the knowledge that my studies had given me was proving to be directly helpful to Daniel. We were now not following anyone else's programme, but were utilising our own knowledge and experience to fill his day with developmentally appropriate activities. As a consequence he was doing better than ever, - his hypersensitivity was under control, he was using his vision and hearing well and was tring to talk. He was also a great deal more relaxed, his anxiety having disappeared.

Over the next few years, I studied more alternative approaches auch as 'Tomatis,' auditory integration therapy,' 'sensory integration therapy,' 'Sonrise,' 'Floortime' and 'reflexive inhibition' to name just a few. Where appropriate we then incorporated some teechniques into our own approach with Daniel. I also continued my studies at University, spending a great deal of time at the University of Sheffield's department of Human Communication Sciences as a student under Anne Locke. Anne is one of the world's foremost specialists in language development in children and in devising programmes of rehabilitation when language development is impaired. She was particularly interested in language impairments in autism. I gained so much knowledge from my time with her and eventually qualified with a post grad diploma in 'Language and Communication Impairments in Children' and ultimately with an MSc. All of this just added to my ability to help Daniel who was now clearly communicating pre-verbally and occasionally verbally too.

In the year 2001, Daniel's health began to deteriorate. A strange event occurred one day in so much as Janet was reading a magazine and turned the page. As she did so, the page made a sharp 'cracking' sound. Daniel threw himself into an over-exaggerated startle and began to scream. He continued to scream every day on and off for the next 18 months. Doctors were called, - there were trips to hospitals and no one could find anything wrong, - the screaming persisted. Medications were tried, all to no avail. One other thing we noticed was that his muscle tone, which had always been on the very stiff side, collapsed into hypotonia, - instantly!

It became obvious over the ensuing months that Daniel was not doing well and when his breathing also deteriorated we were supplied with oxygen at home. His paediatrician surmised that he was suffering brainstem seizures and treated him accordingly. This did seem to be a valid assumption as she did manage to temporarily stabilise his condition, but she hinted that this was only temporary and that we should ultimately prepare ourselves for the worst.

In preparing us for this eventuality she handed Daniel's care over to the medical and nursing team at 'Hope House Hospice.' This was quite a blow to us psychologically and I think it took us quite some time to come to terms and accept it, but when we did, we found the people there to be absolutely wonderful and in that period, Daniel experience the best medical care he ever had. We bacame used to using Hope House as a resource centre, - a 'drop in' station where we could always find support. The nurses would also frequently visit Daniel at home.

Hope House had no idea concerning the screaming either and concurred that our former paediatrician was probably right in her diagnosis. We all carried on with life as best we could, although the psychological effect of a child who has screaming fits is draining and demoralising. The effect on Daniel's younger brothers was also drastic.
On the 24th of November 2003, Janet and I went Christmas shopping in Chester, leaving Daniel in the temporary care of his grandparents. We had only just managed to park in Chester when we received a telephone call from home saying that something drastic had happened. Daniel had 'turned grey' and collapsed. A doctor was called, oxygen administered and he pulled through it but was obviously weakened. I drove home from Chester in 25 minutes, which wasn't bad considering it is usually a 40 minute journey! The doctor said it was probably another seizure and that really there was nothing more that could be done. This attack had frightened us and we swore that we would now be at his side constantly. We couldn't believe what was happening to our little man, - he was slowly slipping from us it seemed.

Over the next two weeks, Daniel rallied a little and we began to be hopeful that he was on the mend, then on the 8th of December at 9AM, exactly two weeks after his previous attack, it happened again. I took Harry to school and was met on my return by a very agitated Janet who was desperately trying to give Daniel oxygen. Daniel was grey and looked to be on his last legs. Fortunately we had GP who had opened himself up to us, even giving us his home number. He was with us within minutes, but very, very pessimistic concerning Daniel's outcome. The consensus of opinion was that to move him to hospital would only worsen his condition and place him in an unusual environment in which he would be afraid. So the plan was to care for him at home. It had by now become blatantly obvious to us all that Daniel was spiralling downhill out of control and that another attack like the one he had just endured would be the end of matters for him. The opinion of the hospice nurses, who were now with us around the clock, 7 days per week, was that he only had a few days left. He actually lasted almost two weeks, but this was a boy who had broken through every restriction that had ever been applied to him. Daniel remained unconscious for the next 12 days

It was the night of December the 20th, 2003 and it was Daniel's younger brother, Thomas's 14th birthday. Daniel had remained unconscious throughout the day. Thomas had gone to bed, as usual wondering whether his brother would be there in the morning. Every night we had to reassure him that if anything changed we would wake him. Harry, at 4 years of age was fortunately too young to understand. He knew we were in a highly stressful situation, but didn't really get what was going on.

At three minutes past midnight, the hospice nurse reported a change in Daniel's breathing. Apparently, when a person is going to die, their breathing pattern changes to what is called, 'chainstoke breathing.' Daniel had waited until 3 minutes after his brother's birthday to begin his final descent. We were distraught, but at least we were all at home, in what he knew to be a safe, secure environment.

I don't actually know how we coped with the next four hours and forty three minutes, but we did. It all seemed so unreal, here we were literally at the deathbed of a glorious little boy, - our glorious little boy and there was nothing we could do!
Daniel slipped away at 4 – 43 AM on the morning of the 21st of December, - the morning of the solstice, - the rebirth of the Sun. I watched as the light of life drained from his eyes and he simply was no more! We woke Thomas and told him the news. Tom and Dan had grown up together and were very close, so Tom, even though he knew it was inevitable, was devastated. He just sat and held Daniel's now lifeless hand.

The next few souless. Empty days seemed to drag for an eternity. None of us knew what to do with ourselves. The days were filled with grief and sorrow.

We discovered a few weeks after that it turned out that the doctors suspected, but could not prove that Daniel had been suffering a series of brainstem / cerebellar strokes over the previous weeks. - An accident waiting to happen, which no intervention could have stopped and that the screaming of the past 18 months had been due to cerebral irritation from an initial stroke he suffered then.

The next year was a blur of pain and horror and I don't know how individually we survived, but we did! The loss of Daniel as a person was bad enough, - the worst thing any parent can suffer is the loss of a child, but I also felt as though I had been made redundant. I had lost my job as a carer for him too and so I floundered. It took so long to even be able to face the actuality of what had happened, let alone to try to get over it. How do you ever 'get over' the loss of a child. I don't think you do, I think that eventually, you just learn to live with the fact. It becomes part of you, like an old war wound!

As I emerged from my own depressed state, my determination rose that Daniel's death should not be in vain. Despite his overwhelming disabilities, he had lived his life full on, enjoying each moment. Right up until the last moment he had fought, he was a true warrior. How much less would I be if I gave in now? I knew then that I should put to use all the knowledge and experience I had gained to try to help other children. In that way lay the future and so the beginnings of Snowdrop began to emerge.

I chose the name 'Snowdrop' because of it's significance. The Snowdrop is a symbol of hope through adversity. - A fitting symbol for many of the families I now see. Also, despite all the snow and ice which hampers it, it still manages to crash it's way through to be the first flower of spring.

I began seeing children just over two years ago and the success I have seen has been remarkable. Children who can now run, walk, talk, see and hear, who otherwise simply would not have done so. Of course there are children who do not make such dramatic progress too, but rarely do I see a child who makes no progress at all.
My philosophy is simple and evidence based and has been built 'brick by brick' over the past 23 years. It consists of some central tenets.

(1). When a brain is injured, it very often loses it's ability to process sensory information normally. This means the child does not percieve the world in same way that you or I do. The most obvious manifestation of this is often seen in children who have autism, but the problem occurs to a greater or lesser extent in almost every neurodevelopmental condition. This is because, when a brain is injured due to oxygen starvation, the first area to suffer appears to be the thalamus. The thalamus plays a crucial role, along with the reticular formation and the structures of the limbic area in sensory processing.

If a child is not able to process information as we do, about the sensory environment, then because behaviour is a response to the information we have processed about that environment, - the child's behaviour will be abnormal. Again a good example of this is the child with autism who displays self stimulatory behaviour. There is now strong evidence to support the idea that these behaviours are directly linked to the child's sensory experience of the world.

So our first task is to normalise these sensory channels so that the child perceives the world as we do. Then and only then will any developmental stimulation have a positive effect. These neural structures can be re-tuned by providing an appropriate sensory environment.

(2). Only when we have the child's sensory channels operating to maximum efficiency can we make a true judgement of his developmental status and his developmental potential. It is now that we begin to try to influence brain plasticity, by supplying an increased environmental demand for developmental function. Allow me to explain the concepts of 'brain plasticity' and 'environmental demand.'

Neuro - developmental problems such as cerebral palsy, autism and many others can be devastating to both child and family. The problem involves millions and millions of neural networks whose functioning has been disrupted by either the adoption of an improper pattern of connectivity, or the loss of brain cells.

Overcoming brain injury is a long, hard slog, of dull routine, of going over the same exercises and developmental activities again and again and yes, - again! This is how brain plasticity is driven.

Brain plasticity, or neuroplasticity is the ability of the brain to build new connections, - literally to re-wire itself in order to allow the individual to function adequately in his or her environment. It doesn't just happen, as if by magic, it is driven and guided by the environment, - it responds to the needs of the individual. We see this everyday in ourselves, who fortunately are not brain injured. I recently learned to juggle, - it took me quite a while and many, many attempts before I managed to even begin to be able to do it semi - competently. As I was practising over these many months, very slowly my brain began to respond to the environmental demand I was placing on it and began to devote neurological resources to assist me in my task. It began to build neural networks which would enable me, bit by bit to master the function to which I was exposing myself. Eventually, with sufficient practice and with sufficient neural wiring built to support my activity, I became able to juggle. That is how brain plasticity works! It is not an overnight phenomena!

Let's extrapolate this knowledge about plasticity to our brain injured children who are at home doing their Snowdrop programmes. For a start, the brain injury, - or the brain dysfunction, creates a 'roadblock' in the brain, which slows down or stops everything. It slows down, stops or distorts development because it slows down, stops or distorts the brains ability to communicate with itself! What the Snowdrop programme is designed to do is to provide sufficient impetus through providing appropriate developmental activities in an appropriately enriched sensory environment. In this way we can increase or decrease the stimulation to which a child is exposed in order to accommodate the problems created by the brain injury. In this way we can overcome that roadblock and to get the traffic moving again.

This is why the repetitions of the activities within the programme are so vitally important.

In the same way that the repetitions of my juggling attempts were important to building plasticity, so are the repetitions of the activities within the programme! First we create the environmental demand through the activities of the programme and then we have to wait for the brain to respond. It takes time and patience. It is the long term product to which I am looking. When I devise a programme I am looking months and years down the line at where I eventually want the child to be.

Snowdrop has now been in existence for nearly three years. In that time, I can now produce children from all over the world who can see, hear and feel; - children who can talk, walk and run, who before the programme could not do so. Has Daniel's life and his suffering been in vain? No! He was sent to teach me and to take me on a journey of discovery. The journey goes on!

Anyone wanting more information on Snowdrop's therapy can email info@snowdrop.cc  You can also visit our website at http://www.snowdrop.cc  Or you can read our books by clicking here

Friday, 23 July 2010

What is Autism?

The two major types of autism, of which you have probably heard are autism and asperger’s syndrome, although there are other diagnoses, such as PDD (Pervasive Developmental Disorder), where children display symptoms which are considered to be on the 'autistic spectrum.'  There is also an argument as to whether Asperger's and autism are related and on the same spectrum, or whether Asperger's is a condition in it's own right.  We will shelve that debate for now!

First let’s look at classical autism, how would we recognise it? Well, autism was first described in the mid 1940’s by a psychiatrist called Leo Kanner. He described a group of children, whom he was treating, who presented with some very unusual symptoms such as; - atypical social development, irregular development of communication and language, and recurring and obsessional conduct with aversion to novelty and refusal to accept change. His first thoughts were that they were suffering some sort of childhood psychiatric disorder.

At around the same time that Kanner was grappling with the problems of these children, a German scientist, Hans Asperger was caring for a group of children whose behaviour also seemed irregular. Asperger suggested that these children were suffering from what he termed ‘autistic psychopathy.’ These children experienced remarkably similar symptoms to the children described by Kanner, with a single exception. – Their language development was normal!


What is the cause of autism?


In the 1960s and 1970s there arose a theory that autism was caused by abnormal family relationships. This led on to the ‘refrigerator mother’ theory, which claimed that autism in the child was caused by cold, emotionless mothers! (Bettleheim, 1967). However the weight of evidence quickly put this theory to bed as evidence was found to support the idea that the real cause was to be found in abnormalities in the brain. This evidence was quickly followed by findings, which clearly demonstrated that the EEGs of autistic children were, in many cases, atypical and the fact that a large proportion of autistic children also suffered from epilepsy.

From this time, autism has been looked upon as a disorder, which develops as a consequence of abnormal brain development. Recently, evidence has shown that in some cases, the abnormal brain development may be caused by specific genes.

However, we should not forget that many genes can only express themselves if the appropriate environmental conditions exist for them to do so and consequently, we should not rule out additional, environmental causes for autism, such as brain injury.

An insult to the brain, such as that produced by oxygen starvation, is surely capable of producing the same effects as can abnormal development of the brain, which may have been caused by genetics.  I see this in a number of my patients who have cerebral palsy caused by brain injury and who also display many symptoms which are clearly on the autistic spectrum. 

In my opinion then, the cause of autism needs no complicated definition, whether it is produced by genes, environmental causes such as, alcohol abuse or abuse of other drugs, infection, jaundice, malnutrition, or one of many other causes, - or by oxygen starvation. It is simple and easy to understand. The cause of autism is brain–dysfunction.  Whether that dysfunction is caused by brain - injury, faulty genes or other factors is of little consequence! It is that simple! The important and simple thing to remember is that autism is caused by brain–dysfunction; in fact, autism is an expression of brain–dysfunction.


What do you mean by an expression of brain-dysfunction?


When I speak of autism being an expression of brain–dysfunction, I am leading you down a path, which will hopefully allow you to see your child’s problems in a new light. Let us take this a little deeper and say that autism is also a symptom (or set of symptoms), of brain-dysfunction; - it is the way in which your child’s brain–dysfunction expresses itself. There are other expressions of brain–dysfunction, some of which are used interchangeably with autism! I put the idea to you that autism is a symptom of brain–dysfunction in exactly the same way that a cough is a symptom of a chest infection. The only reason for the existence of the term autism is that it, itself is a convenient marker for specific groups of sub-symptoms; - yes sub-symptoms of brain–dysfunction! These symptoms might include epilepsy, poor visual, auditory and tactile development, impaired motor function, poor language development, difficulties of socialisation, learning difficulties, or other symptoms.


That is all very well, but are you not just ‘nit -picking’ over terminology?


No! It is important that this situation is both clarified and simplified. I have misgivings over the continued use of the terms ‘autism’ and ‘Asperger’s syndrome,’ (as I have misgivings over the continued use of many other labels such as ‘cerebral palsy,’ for example). These are terms, which merely describe symptoms. I believe this is misleading and overly-complex. It is much easier to understand the concept and the possible ramifications of brain-dysfunction, than it is to understand the concept of autism. I feel it is important that you should be aware of the problems around terminology and how it has encouraged the development of symptomatic treatments. Consequently, where I use those terms within this text, it is merely to make a point in reference to a particular expression of brain-dysfunction.

In most other areas of medicine, it is the cause of an individual’s problems, which receives treatment, yet in the case of brain-dysfunctions, this invariably does not occur. If your child is suffering from allergies and he will not stop sneezing, does the doctor place a peg on his nose and claim that because he has stopped him sneezing, he has cured the problem? No, of course he does not. He will (hopefully!) send your child for tests to determine the cause of the problem and then, having determined the cause, he will set about treating it.

I believe that in the case of brain-dysfunctions the medical world has fallen into the trap of merely trying to offset the worst effects of the symptoms. In some cases, as in the case of epilepsy, controlling the symptoms is a necessary step, but this should be done alongside attempts to treat the cause of those symptoms, as in some cases the focus on treating symptoms can have the effect of making them worse.

So a primary principle of treatment is, whilst it is important to take note of the symptoms and where they pose an imminent threat to the child, (such as certain types of epilepsy would be), to see that they are treated, it is also important to concentrate on the cause of those symptoms, the malfunctioning brain! The reason those symptoms exist is because the brain–dysfunction has prevented the normal developmental processes from taking place, in the brain and consequently in the body. Consequently, to achieve success, we must provide assistance to those normal developmental processes!  The question is, how do we do that?

When I see a child with autism, (or any other neurodevelopmental disability), the first thing I am interested in is the function of his sensory system, - how the child perceives the world.  As beings we are what we perceive and we react to and operate within the world that we perceive. If the sensory experience of a child is chaotic, then his behaviour is likely to be chaotic, - a sort of 'chaos in – chaos out' situation. If a child is unable to perceive a great deal at all, then we are faced with a 'nothing in – nothing out' situation. So first of all, our priority has to be to normalise sensory perception as far as is possible. This is phase one of my developmental plan for any child.  If we are able to improve or normalise a child's sensory perception then usually we also see improvements in his cognitive abilities.  This is because cognitive development is intertwined with sensory development. We do not simply learn to see, hear and feel, - we learn to understand what we see hear and feel. We also usually also see some improvements in output abilities of mobility, language, hand function and socialisation as a consequence of improved sensory functioning because these functions operate on several neural sensory – motor loops.  So if input is improved, output responds accordingly.

The next step of my plan is to further encourage brain plasticity to build the neural architecture necessary for the further development of output functions. The question is, how do we do this? We do this by supplying increased environmental demand for the use of those functions. 

To illustrate my point properly, let me explain a little about plasticity. It is not an overnight phemomena, it is influenced over an extended period of time by exposure to repeated environmental demand for the development of an activity or function.  In a previous post, I used the analogy of myself learning to juggle. At first I couldn't do it at all, there were balls falling all over the place, but gradually, with practice and with external verbal support, I was able to develop the skills necessary, - internalising that verbal support as I became better, until months later it became an automatic function. It became an automatic function because very gradually, my brain had responded to the repeated environmental demand for me to learn to juggle. In doing so, it had devoted neural resources to support the function and the plasticity of my brain had responded successfully.   This is precisely what the Snowdrop programme does.  It takes time and hard work, but many times, it succeeds.

If you would like more information about our work, you can visit the Snowdrop website, or you can email me, or you can purchase one of our books.

Tuesday, 20 July 2010

Epilepsy. - Diagnosis and Treatment.

Epilepsy is a very common problem suffered by brain-injured children. It is very distressing to watch and can be debilitating for the child. It is also exceptionally varied, ranging from a few unnatural blinks of the eye through to a ‘whole body’ convulsion. Just when I think, I have witnessed probably just about every variety of epileptic attack, up pops a child who produces something unique.

What is epilepsy?

Epilepsy is the tendency of specific brain-cells to misfire. There are three distinctions of epilepsy to bear in mind in understanding this problem. The first distinction is that an epileptic episode is either partial or generalised. The second distinction is that an epileptic episode is either simple or complex. The third distinction is that epileptic seizures are either grand mal or petit mal. Confused? – Don’t worry, read on and it will all become clear.

Normally, brain cells fire according to their being excited beyond a certain threshold of stimulation, or they are restrained from firing because they are inhibited from doing so. Sometimes in epilepsy, these inhibition and excitation thresholds are not applied successfully, causing brain cells to misfire very easily. When this happens, two things can occur:
  • The misfiring may be limited to a specific area of the brain, causing a very specific response from the individual such as a short absence or a twitching of one limb. These are known as partial seizures.
  • The misfiring may form a chain reaction, which spreads to a larger area of the brain, causing a more generalised response from the brain.

Adams & Victor (1981), successfully demonstrated this phenomenon by measuring seizure activity with electrodes placed inside patients’ brains.

Partial seizures can be further subdivided by our second distinction of simple and complex.
Simple, partial seizures bring about changes in the level of consciousness, but never involve a loss of consciousness, whereas complex partial seizures do involve a loss of consciousness.
Sometimes, if the focus of the epileptic activity is in one of the temporal lobes of the brain, the child may experience an aura prior to the attack. This ‘aura’ may be an experience of positive or negative emotions, it may be a hallucination of one or more sensory modality, or the aura may trigger memories or stereotypical movements.

We now come to our third distinction of seizure activity, grand mal and petit mal seizures. Sometimes during a more dramatic ‘complex partial’ seizure, the child’s body may rhythmically shake. This is known as a grand mal or tonic - clonic seizure. Although this looks dramatic, it is nothing to be alarmed about and is usually over within a few minutes as a combination of structures in the brain, collectively known as the diencephalon act to suppress the seizure activity.

A petit mal seizure is less dramatic, usually very brief and is sometimes so shallow as to go unnoticed by parents, teachers and doctors. An example of such a seizure would be an absence, where the child simply stares vacantly for a second or two. I know a child who used to experience more than fifty such absences an hour and although they sound unobtrusive, when experienced at this magnitude the disruptive effect they can have upon life is easily underestimated.

Finally, and importantly, one aspect of epileptic activity, which it is important to discuss is a phenomenon known as status epilepticus. Usually seizure activity will dissipate within a few minutes and the child will recover with no harm done. However, rarely the seizure activity either will not stop, or the child emerges from one seizure, quickly to be consumed by another and another. This is a dangerous and potentially life threatening situation, which needs immediate medical intervention. In extreme cases such as this, seizures are capable of causing further brain-damage. It has been demonstrated that some patients with seizure disorders display injury to a part of the brain called the hippocampus, the amount of damage being closely correlated with the number and severity of seizures, which the patient has experienced. The damage appears to be caused by the excessive release of a neurochemical called glutamate during the seizure. (Thompson et al, 1996). It is consequently vital that even if you only suspect your child to be experiencing seizure activity, that this is checked out by a doctor.


What causes epilepsy?

Epilepsy has two causes, one is pathological, and the second is physiological in nature.

Pathology: -When a brain suffers injury, millions of brain cells may die. Around the area of injury, there may also be cells, which have not been killed, but which are nevertheless injured. In addition, as I have previously alluded, the thresholds of excitation and inhibition, which normally control the firing of these cells, may have been disrupted. Therefore, these injured cells may not fire according to their normal patterns, but may more or less constantly misfire. The child in this situation may have more or less constant epileptic activity occurring in his brain.


Physiology: - The environment in which the brain operates is by necessity oxygen and nutrient rich. Although the brain only comprises approximately 2% of the body’s weight, it consumes 25% of the body’s oxygen intake. When a brain suffers injury, the availability of the oxygen supply can be compromised. For instance, in many cases of brain-injury, the development of the rate and depth of breathing of the child, does not progress from that of a newborn, which is fast and shallow; - this places difficulties on the optimum levels of oxygen availability, thereby compromising the physiological environment of the brain. Similarly, uninjured children who are ill and develop a temperature, may suffer an epileptic seizure as the temperature rise deprives the brain of oxygen, temporarily creating a poor physiological environment.

The young child with brain-injuries may also have trouble in taking in adequate nutrition, which could cause similar physiological effects. The brain’s response to this impoverished physiological environment is to produce a seizure reaction. When brain cells struggle to operate normally without the oxygen and the nutrition they need, they begin to misfire.


What can be done to combat epilepsy?

There are many approaches to combating epilepsy, which may improve your child’s situation. Often a programme of developmental stimulation can reduce seizure activity. The reason for this is that if developmental gains can be produced in the child, it means the brain is operating at a more mature, efficient level. This ‘brain development’ can suppress seizure activity.
It is also important that children, who are predisposed towards epilepsy, be given good nutrition. This will help to maintain the physiological environment of the brain in as optimal a state as possible and hopefully keep seizure activity to a minimum.

There is a wealth of medical technology now available, which can help to combat seizure activity. Anti-convulsant medication always extracts a price from the child in terms of drowsiness and other side effects, but it is often necessary, if only temporarily to keep epilepsy under control. As long as the levels of medication are kept to the minimum levels needed to control the seizure, there is no harm in pursuing this path.

If you require more information about Snowdrop programmes of neuro-developmental stimulation, email us at info@snowdrop.cc or visit our website  Or you can purchase our books by clicking here

Monday, 19 July 2010

Further evidence for an autism - vaccine link.

With thanks to Age of Autism.  I reprint this here because this research needs to be widely disseminated.


Abnormal brain growth and function are features of autism, an increasingly common developmental disorder that now affects 1 in 60 boys in the US. Now researchers from the University of Pittsburgh and Thoughtful House Center for Children in Austin, Texas, have found remarkably similar brain changes to those seen in autism in infant monkeys receiving the vaccine schedule used in the 1990’s that contained the mercury-based preservative thimerosal.

The group’s findings were published yesterday in the journal Acta Neurobiologiae Experimentalis. They used scanning techniques that assessed both brain growth and brain function in the same animals over time. The research team was able to see differences in the way the brains of vaccinated and unvaccinated animals developed. Scans were performed before and after the administration of primary MMR and DTaP/Hib boosters that were given at the human equivalent of 12 months of age.

Throughout the study period, vaccinated animals showed an increase in total brain volume – a feature of the brain in many young children with autism - when compared with unvaccinated animals. However, a specific part of the brain associated with emotional responses that is thought to be important in autism, the amygdala, did not show abnormalities until after the 12-month vaccines had been given. In addition, after the 12-month vaccines only, the functional brain scans showed significant differences between vaccinated and unvaccinated groups. These functional scans looked at the activity of receptors for morphine-like compounds (opioids) that may play a role in the brain of children affected by autism. Vaccine administration was associated with an increase in opioid binding activity in the amygdala compared with a decrease in the unvaccinated group.

The results indicate that multiple vaccine exposures during the previous 3-4 months may have had a significant impact on brain growth and development in ways that are consistent with the published data on autism. For the amygdala, the novel findings of abnormal growth and function appear to be a function of more recent vaccine exposures - the 12-month primary MMR vaccine and the DTaP and Hib boosters.

In an accompanying editorial Dr. Kris Turlejski, the Editor-in-Chief, described the findings as “alarming”, “support[ing] the possibility that there is a link between early immunization and the etiology of autism.”

In the same primate model, the research team has already identified delayed acquisition of vital brainstem reflexes in infants exposed to the thimerosal-containing hepatitis B vaccine on the first day of life, compared with unvaccinated animals. A larger, second phase study is currently underway to see if these findings can be replicated.

Dr. Andrew Wakefield, who is not a listed author but whose support in the design of the study is acknowledged, said “I hope the model will not only provide important insights into the origins of autism, but also ways of safely testing possible new autism treatments and vaccines.”

References:
Laura Hewitson, Brian J. Lopresti, Carol Stott, N. Scott Mason, and Jaime Tomko. Influence of pediatric vaccines on amygdala growth and opioid ligand binding in rhesus macaque infants: A pilot study. Acta Neurobiol Exp 2010. 70: 147–164

Kris Turlejski. Focus on Autism Editorial Comment Acta Neurobiol Exp 2010. 70: 117–118



Snowdrop provides programmes of neuro - developmental stimulation for children who have autism.


Read my book on Autism

Friday, 16 July 2010

How to give your child a head start


All parents want to give their child the best start in life. All parents want their child to achieve his or her full potential. There is nothing wrong in that desire, it is natural and good. Did you know that by the time your child is ready for school, most of the phenomenal brain growth which occurs in the first five years of life will be over. Young children, even babies have an exeptional capability to learn, they absorb information at a phenomenal rate, if it is presented in the right way. In Western societies, we ignore these early abilities of a young child's brain and then when the period of rapid brain growth and neuroplasticity is over, we send them to school! Does that sound a little 'topsy – turvy' to you?

By the time your child is ready for school, the parameters of his cognitive functioning and his ability to learn have been largely set. The school system and the teachers within it, do their best but they can only work within the parameters of the child's ability which have been set by his development up to that point.

Would you like to give your child the best start in life?
Would you like to help your child to achieve his / her full potential?
Would you like to know how, by the time your child is ready to enter school, you can help him to have the highest perameters of cognitive, physical and physiological functioning?

We know that children who are exposed to an environment which is appropriately enriched, grow up to develop bigger, better developed, more intricately interconnected brains. We know that a child with such a good brain is likely to be comparatively physically, socially and intellectually superior. We also know that children who are exposed to an environment which is impoverished grow up to develop smaller, less well developed, less intricately interconnected brains and that this leads to them being comparatively physically, socially and intellectually inferior. This is fact and has been proven in study after study.

The question is, how do we provide your child with this 'appropriately enriched environment?' This is where Snowdrop comes in.
Snowdrop has been using the conventions of neuroplasticity for years in the treatment of children who have brain injuries. We have done this to successfully improve the functioning of children who have developmental disabilities such as cerebral palsy, autism, dyspraxia, learning difficulties and many more. 
 
However, this can also be done with well, uninjured children. Did you know that a child as young as a year old can be taught to read?

At Snowdrop, we believe that all children, whether they have developmental disabilities or not, have the right to achieve their full potential. We supply programmes of stimulation geared to improve your child's developmental functioning in every area, including social development, so that your child can be physically, intellectually and physiologically at his peak.

There is no major upheaval involved in providing an appropriately enriched environment, - there is no major expense either. Most of our recommendations can be easily incorporated into your daily life and natural interactions with your child. The most that would be asked of you is a few minutes more per day dedicated solely to interacting with your child. A small thing to do in order to give your child the best chance in life.

If you are interested in giving your child the best opportunity for growth and development then contact me, Andrew Brereton on snowdrop_cdc@btinternet.com, or give us a call on 01884 38447